cut the b*tches off

new girls on the block

2011-10-12T12:06:00.000-07:00

Too be honest, I'm getting a little tired of this blog. But I want to keep sharing for a little while longer, for those of you whom are contemplating the flat side of life. There are plenty of blogs out there that talk about reconstruction but not so many for the unconstructed.

What's life like without breasts? Very empty. As in, when you look at your chest, it is like a blank canvas (with a red line drawn across it). All the tissue is gone. It is hard and flat. You can see your muscles jump if you flex. When you hug someone tight, it hurts them and it hurts you. There is no protective fat tissue left to keep your sternum from pressing into you and the person you're hugging.

We (dw and I) can live without them but we do miss them. She misses them because... well you can fill in the blank. I miss them (because of that too) and because I was so used to them being there. Like you would miss your nose if you looked in the mirror and it was gone one day. I miss cupping them in my hands. Yes, I admit I'm a fat grabber. Like your old man who sits on the couch with his hands gripping his fat belly. I like to do that especially if I'm laying in bed and can't sleep. I like to hold on to my boobs, or my belly fat. Don't ask me why. A comfort thing I guess.

I don't mind so much what I look like in clothes without my boobs. It's not a blank canvas then. So when I picked up my prostheses at Imani's the other day, I was surprised how excited I was! It's like playing dress-up. It's fun to slip on the fake boobs once in awhile even with just a t-shirt. I've worn them to class and just to walk down to the shops. I don't think I'll be wearing them to work because they are fragile and I do a lot of leaning up against the med cart and have to help residents sometimes and I don't want them getting ruined. Besides, it is more comfortable not having to wear a bra. I did wear them to the gym the first day though because I picked them up on my way to physical therapy. One of the bras I got was a sports bra so I tried it out. Much better than I imagined it would be. No slipping or anything. I wondered whether the boobs would ride up but they stayed in place. I wasn't doing anything like zumba or gymnastics. Just basic stuff like the elliptical and some weights but they felt good.

I haven't gotten any comments with or without the fake boobs on, so those of you who are afraid life without boobs will be embarrassing, people don't really notice. I'll post some pics later.

And the mastectomies were because...?

2011-10-05T01:07:00.000-07:00

The pre-employment physical is always a nerve racking time. Used to be the drug test that made me nervous even though I've never done any illegal drugs. You wonder if eating a poppy seed bagel may cause you to flunk it or maybe hanging out too close to someone smoking a happy cig might rub off on you. But ever since I got discriminated at one of these things for my diabetes, I hold my breath until I get the official word that I passed. And as I get older, I have more and more things to ~~hide~~ worry about.

My blood sugars have been really good for the last few months, but of course this morning it was high. This was the day I needed to go get my physical for my new job. Yeah, I'm going to be doing the same thing, but much closer to home. A 5 minute car ride away instead of 40+ minutes. Turns out my boss took a new job right down the street from me, at a place I had tried to get into before I got my current job. They wouldn't take me then, but now I'm in like flynn. So anyways, I have to pass a physical before I get the job. This time the paperwork didn't say anything about a drug test but you never know so I was worried when my sugar was high because if they make you pee in a cup, they might test for sugar. So I stalled and drank a ton of water in hopes of flushing any sugar and ketones out of my system while I loaded up with some insulin. Not sure what happened because it proceeded to get even higher, so continued to drink and wait until it finally came down to a respectable number. Sure enough, when I got there, they made me pee in a cup so they could test for sugar and protein. Doctor didn't mention anything about it so guess it wasn't too off the charts.

Now, my job is pretty physical so they test for a little more than just seeing if you can bend over and touch your toes. Although I did that as well. The paperwork this time wasn't so bad. They did ask if you've ever been hospitalized but they didn't ask why. Most of my surgeries were outpatient so I didn't have to write down "a billion times." Just 2 (because I forgot I was in the hospital when I got diabetes, that was so long ago). It did ask if I had surgeries but it was just a yes or no answer so I didn't need to divulge anything about my thumb surgeries or my most recent broken ankle. I had to take 2 eye tests. Both long distance and near distance. My eyes are changing and if I just wore glasses I'd be in bifocals but it's a little trickier with contacts so it was a little challenging to pass that test. One of my eyes sees better far away and the other sees better up close. And the high blood sugar this morning didn't help matters since it makes my vision worse. But I passed it.

So I'm sitting in the little room wondering what doctor will walk through the door. It always seems to be some old guy that should be retired but must need the money. Today I was blessed with a fairly young female doctor. Went through a battery of tests including walking in a straight line, standing on my heels and then my toes, gripping her finger with my hands, doing some fast movements with my fingers. All stuff that I was able to do since my ankle has loosened up a lot and although my fingers are sore, they aren't locking up most of the time. So time to lay down on the table and get my heart listened to. I could tell that she must have gotten a look at my scars because it seemed like my gown was coming up too high. Don't know why you have to sneak a peek to get the stethoscope over the heart, but whatever. She announces that I have a heart murmur and wonders if I've ever had any problems with it. Um, no. No one has ever said I had a murmur before. And then the question, "And the mastectomies were because...?" Either she knows people get prophylactic mastectomies sometimes or she was wondering if I was going through a sex change. Anyway, I think I passed the physical despite all my physical shortcomings because she congratulated me on my new job. Or she doesn't have the guts to flunk me to my face, like the old dude many years ago who told me I could do anything except be a pilot. And then he told the plant not to hire me because my diabetes could cause me to pass out at any time. Yeah, and so could a bottle of tequila but neither one has yet.

if you can't outrun it, overthrow it

2011-09-23T00:58:00.000-07:00

I heard some statistics on the news the other day: 1 in 2 American males and 1 in 3 American females will get some form of cancer at some point in life. And 1 American dies every minute from cancer. Odds are great that you or someone in your family has/had or will have cancer. Sounds pretty hopeless doesn't it? Especially when you take into account that cancer isn't even the leading cause of death in the U.S. (heart disease is).

So what are we supposed to do with this information? Sit around and worry about every ache and pain, lump, cough, odd mole or bruise that pops up? Screw that. Well...please do take precautions such as annual checkups and screenings and do go see your doc if something unusual is going on. Heck, not everyone dies from cancer. The ones that find it early usually fair well. But in between time feel free to follow my 3 step plan to overthrow cancer:

1. Enjoy Life
Do something fun. Today. Follow up with more fun tomorrow. You deserve it. And when you're at work or school or whatever, daydream a little about the next bit of fun you're planning.

2. Love Your Loved Ones
You know those people you used to hang out with all the time before you became an adult and started the 9-5 drudgery and forgot how to enjoy life? Give them a call, or better yet, a skype. Send an email, or better yet, a letter! Spend some time with them, enjoying life together. Remind yourself why you love them and then remind them why you love them.

3. Get Insurance
When cancer hits or some other illness, you sure will appreciate having health insurance! Even better if you can find decent health insurance. It may not seem fair, but even when you have cancer, they expect you to pay for it. And it sure takes a load off your already blown mind not to have to worry about how you are going to pay for surgery or medicine or chemo or radiation. A lot of insurance these days are 80/20 or 70/30. That means you foot the bill for 20 or 30% of a lot of things. I have been lucky to have had a ppo or hmo that paid for 100% for most of my surgeries or tests with small copays.

Now that I look back at things, I think I prefer to stay with an insurance that will pay 100% even if it means I have less doctors to choose from. This broken leg cost over $21,000 (not including the 8 weeks of lost wages). Our out-of-pocket cost has been about $125 so far which includes the visit to the ER, 4 doctor visits and 2 xrays, surgery, crutches and a wheelchair rental, 1 physical therapy session and an ambulance ride. Yep, loving the hmo even more so because it is the cheapest plan offered. Go figure. Now I just need to look into buying some disability insurance because State Disability Insurance doesn't cut it.

guest post: a few words from wondertwin

2011-09-11T12:46:00.000-07:00

Today's post is written by my wondertwin. The term "wondertwin" comes from the superheroes cartoon we enjoyed growing up. People often ask me what it's like being a twin. Picture your imaginary friend coming to life. We shadowed each other for the 1st 18 years of life before we went our separate ways to college. We had the same friends, shared a bedroom, birthday cakes and presents and now we share diabetes and a brca mutation.

Thank you, wt for sharing some of your feelings with us, and your wonderful photos!

A Flood of Emotions

There are some things that we can prepare for and some things that we can’t. I like to think I’m a spontaneous, carefree kind of person, especially since I am young(ish) and single and easily amused. In reality, I am the kind of person who plans ahead… Far, far ahead when I can. When my wondertwin was diagnosed with breast cancer and subsequently found out that she was BRCA2+, I started drafting my game plan before I even had my blood work drawn. Part of my decision to jump right into prophylactic surgery was my 33 year history of type 1 diabetes. I felt that with my extensive family history together with my BRCA2+ status, it was going to be when I get breast cancer, not if I get breast cancer… And one of my thoughts was, “What if I wait so long that when I get cancer, my gastroparesis (diabetic complication) is so bad that I’d aspirate on the table and they won’t let me have surgery?” (Did I tell you that I am a nurse? With an old, though mostly kicked, habit of anticipatory doom?) And so I prepared for avoiding cancer.

Before each surgery (BSO, then PBM, then expander exchange), I planned and planned and planned. At first I thought this was a bad thing even though it wasn’t interfering with work or my social life, but my counselor explained to me that in fact, it was a very good thing for me to be doing. I am prone to anxiety, and by making plans and discussing the procedures and logistics and follow-up, etc. with my physicians and support people, I was able to take some control over what was about to happen to me. The more control I took, the less anxiety I felt. (Which was really needed before the PBM, as my anxiety was batting about a thousand.)

One thing I did between the BSO and the PBM was to get a tattoo! Growing up, I never could imagine myself with a tattoo because I thought I would get bored with it too easily, but then I came across some blog entries by people with diabetes (PWD) who had gotten medic alert tattoos. Since I have evolved greatly since childhood and made peace (mostly) with my diabetes, this really sparked something inside of me. The 1^st thing I said when I made up my mind to schedule the PBM was, “If I’m going to get my breasts cut off, then I’m getting a f@*ing tattoo 1^st!” And so I researched tattoo artists and diabetes tattoos and came up with a plan. When I described my idea to the artist, this is what he came up with…

Very cute, but definitely not what I was feeling in my heart, and so I hit the drawing board and this is what I ended up with… My tattoo warrior. She is brave and strong and helped me honor my own courage. It was indeed empowering, and I still love it 1 ½ years later. (Side note: the warrior is ripping apart the medical staff and stomping out breast cancer while holding diabetes at bay.)

So when it came time to consider nipple reconstruction, the possibility of 3 D tattoos rather than skin grafts was a consideration. At 1^st, I really thought that I would be doing a disservice to any future partner if I failed to get “real” nipples, even though the grafts would never be quite the same as the real things. But after discussing the pros and cons with friends and family (is that love or what?) and discussing options with my plastic surgeon, I decided it was way more worth it to me to never have to wear a bra again than to have nipples permanently poking out! And it’s my own body, right? More research and more planning (but only a 2 week wait!) and these beauties are what I ended up with… Before tatts, 1 day after, and 1 week after. (Still peeling and healing.)

So where does the flood of emotions come in, and what is it that we can’t always prepare for?

Despite all of my planning and prepping before each surgery, of course there were elements out of my control and unforeseen circumstances that nobody could have completely prepared for. As the day of my tattoos approached, I was so excited I thought I was going to wet myself, yet there were times that I was nearly overwhelmed with sadness. I mentioned to wondertwin that I must be reliving the feelings I had before my PBM, as if I was starting this whole sad mess over again instead of getting my gift wrap and celebrating the end of it all, cancer free and cancer won’t get me.

That morning, I had my purse packed with measuring tape (and instructions from the plastic surgeon on anatomically correct nipple placement), some 3 D temporary nipple tattoos (to assist with size and coloring), my favorite diet Snapple (The Amazing Race), and a snack in case my blood sugar started dropping. I had my glucose meter handy and was even wearing my brand new continuous glucose monitor (CGM) that had arrived the day before. My blood sugar quickly started climbing from a fairly low number in the 70s up into the 200s. I wasn’t anticipating this, but quickly realized that I was feeling as if I was headed off to yet another surgery (and my last one started with a very bad pre-op experience with the anesthesiologist) instead of to my friendly neighborhood tattoo artist who is very, very kind to me. So I wasn’t prepared, yet I was… I was equipped with the knowledge and power to respond to the threat. I calculated a correctional insulin dose and upped the rate on my insulin pump. I tested again when I got to the tattoo parlor and took another insulin dose and guzzled down my diet Snapple to help flush out any ketones that might be lurking about. I checked my CGM receiver often and took my blood sugar reading when my tattoo artist stopped to mix new colors. It took some time, but eventually everything evened out. (The peach dumplings that night certainly didn’t help. Oh yeah, the dough was made from potatoes!)

We can’t anticipate everything that is going to happen to us in life, but we can take what has happened to us in the past and learn from it and apply it to the future. I am lucky to be surrounded by people who love me enough to share their experiences with me and who allow me to share mine with them… Sometimes the best laid plans really DO work out.

The hospital where I had all of my surgeries had to be evacuated in 2006 during the “100 year flood”. A plan was developed which involved erecting a 7 million dollar flood wall around the hospital, which was completed earlier this year. A week after my tattoos were done another flood, even more damaging than that in 2006, hit the area and 20,000 people in the county were evacuated. The hospital was saved and remains open during the state of emergency.

guest post: David Haas on the Benefits of Cancer Support Networks

2011-08-30T11:15:00.000-07:00

Today's post features a guest post by David Haas who blogs as a cancer patient advocate on the Haas Blaag. David's post talks about the many benefits of cancer support networks and includes several links to places where you can find support. On a personal level, I've found message boards, blogs and cancer sites a great place to sound off, seek comfort, find hope, gain knowledge on treatment options, share advice and learn about new research.

Thank's David!

Benefits Of Cancer Support Networks

Cancer is a hard, ugly disease. Dealing with a cancer diagnosis, painful symptoms, and aggressive treatment can take a huge toll on a person’s physical and emotional health. Whether someone is facing a treatable skin malignancy or a grim mesothelioma prognosis, it can be hard to cope with cancer alone.

The cancer experience is different for everyone, and no two cases are alike. But the common thread among cancer survivors is the need for a strong support system. No scientific evidence supports the claim that cancer support groups can extend survival time, according to the American Cancer Society. But research suggests that support groups can enhance a person’s life quality.

Relationship And Rapport

While most patients have doctors, family members, and friends who support them, they can most benefit from the support of someone who has been there. Talking to other cancer patients offers a relationship that cannot be established with someone who has not gone through the cancer experience.

Cancer support groups provide the special relationships and rapport that patients need to cope with their disease. Group members can exchange firsthand advice, suggestions, and tips that doctors and supportive loved ones simply cannot share.

Hope And Optimism

Talking with someone who survived cancer to live a healthy, vibrant life offers hope. It helps patients feel more optimistic during treatment and recovery. Support group members describe their discussions with cancer survivors as encouraging, uplifting, and inspiring.

Anonymity And Honesty

Community support networks meet in hospitals, schools, churches, community centers, and homes. They are ideal for becoming more involved within the local cancer community. On the other hand, online support groups offer unique benefits that in-person groups cannot provide. People with cancer often prefer online networks over face-to-face groups. Online cancer support takes the form of blog posts, discussion forums, message boards, and chat rooms populated by cancer patients and survivors.

Since the Internet is an anonymous venue, many people with cancer prefer this type of support. Anonymity enables people to get comfortable enough to share their feelings honestly and openly. The Internet also requires writing, and the process of writing about cancer is an excellent therapeutic tool.

Cancer support groups are ideal for people with any type of cancer including colon cancer, rare aggressive diseases like mesothelioma, breast cancer, or other malignancies. Not only do these groups teach valuable coping skills, but they also provide some emotional stability for those struggling in an unsteady world of cancer. Below is a list of some great online cancer support groups:

Inspire.com

Caring Bridge

Cancer Support Community

By: David Haas

shaken up

2011-08-25T10:35:00.000-07:00

I got a text yesterday from wt saying she "felt" it but everything was fine. She's in NY and felt the VA quake. Then last nite we felt one here in CA and felt another one just a few minutes ago. I know a lot of west coasters are making fun of the panic on the east coast because we are used to tremors but c'mon, they are scary! Yeah, I am not a true west coaster having only lived here about 6 years out of my life. I also feel very vunerable right now with the broken leg. Although I finally started walking yesterday without the aide of crutches I still can't get around very well and still need the crutches outside on my hilly street. As I cower under the door jamb, I am reminded that we have no evacuation plan. We've got no emergency cash on hand, our important papers are scattered around, not much extra water, medicine all over the place. I need to at least put together a grab bag of extra diabetic supplies which is easy enough to do since I order everything in a 90 day supply. I can't live without that junk and big quakes and fires have happened here so best be ready.

The past few weeks I've been shaken up on another level. I had my annual eye exam with dilation. This is where they check my eyes for diabetic changes among other things. I've had some retinopothy in the past. Not a great thing to have but nothing too serious and as my eye doc said, it would be unusual for someone who's had diabetes for 26 years not to have some problems. But this time they saw something that looked a little worse. A possible neovascularization. This is when the eye starts making new blood vessels because it isn't getting enough oxygen. The problem is that the new vessels are weaker and can leak and damage the retina and cause blindness. So they wanted me to follow up with another doc in 6 weeks. I only waited 3 weeks cuz I was so scared. Blindness is my biggest fear and something that always lurks in the back of my mind. The doc told me today that not all diabetics get serious problems. Maybe 1 in 10. I'm not sure if that statistic is proven but it does give me some hope. The great news is that my eye problems are not advanced. I'm still in the watch and see phase. Keep my blood glucose in tight control and this spot may dry up on its own. So I'll go back in 6 months and have it checked again. And in the meantime, I have to step up my game. I already do the right thing by checking my sugars several times a day and never skipping a shot but now I have to make some sacrifices. Clean up some bad eating habits, log my carbs and glucose numbers, work on consistency and maybe even make the move to an insulin pump. Lots of hard work but I'm too young to lose my eyes.

life in the slow lane

2011-08-10T22:04:00.000-07:00

It's been over two weeks now since I broke my leg and nothing much has changed since my last post. My ass is still sore and I'm still bored. I think boredom is relative. Once school starts again and my leg is healed enough to go back to work, I'm sure I'll long for these care free days of being a couch potato! I do have some productive things I could be working on but instead I watch garbage tv all day, play computer games, surf the web, watch movies and netflix streaming, play with my legos (thanks wt) and read.

I do manage to get out on occasion for some fun, thanks to the wheelchair provided by my insurance and my loving driver, dw:) Did she once write a guest post saying that I wasn't good at asking for help?! My how times have changed! This will be the 1st time ever in her almost 40 year existence that she will be happy when summer "vacation" is over!

Since I've been on the crutches and in the wheelchair, I've learned some stuff. Like people are pretty decent. Lots of them give me smiles and rush to get the door or give me some words of encouragement. I've even been prayed for twice. One man said "Dear Lord, please heal this guy's leg." Uh, thanks? Can't get too upset with that since I was disguised as a guy in my hat, shades and unbumpy chest.

I am lucky in that being stuck in a chair is temporary. While we have scored a couple of nice parking spots because of the leg, it is not an easy life for those with permanent challenges. Yes, the stores and restaurants have to have a handicapped bathroom but try squeezing through a crowded cafe to get to it in a wheelchair. And try getting through some heavy doors on your crutches when there is no magic button that will open them for you. Try getting around in the hills of oakland or streets of san francisco. I won't even try that! It's kind of scary being pushed around in a chair. Now I know how one of my residents felt when she said "I feel like I'm in a horse race." She wanted me to slow down when I was pushing her chair. The world moves fast when you're on oxy!

It hasn't been all bad. DW and I have never had this much time together before. She's by my side almost 24/7 and we are still on excellent speaking terms. She has been so patient with me and I haven't acted too badly, mostly. We look forward to watching ellen reruns every day at 4 and just laughed our asses off at the halloween episode of modern family.

my ass hurts

2011-07-27T14:34:00.000-07:00

Ouch. I've been sitting on my ass for three days now. Ever since I broke my leg on sunday. Yeah I broke my fucking leg. How? I was jogging. Yeah. Fucking jogging. I've played sports since I was practically a baby. Skating, sledding, skiing, rugby, soccer, softball, basketball, volleyball, tennis, snowboarding, street football, british bulldog, mountain biking. I've tried just about everything and I've never broken anything (besides a couple of toes). I didn't know it was even possible to break a leg by jogging. I asked the ortho if maybe my bones are soft from menopause but he said they look fine and it was the force that broke my fibula, not weak bones. I guess it is possible but why couldn't I have broken it by doing something cooler, like mountain biking? I went biking twice last week and that would have made a better story.

So now I have to hobble back to the damn hospital and have surgery. Then nurse the damn thing for 4-6 weeks. I have a transverse, displaced fracture of the fibula. Not supposed to put weight on it so looks like I will be out of work for awhile. That is the problem with having a physical job. When you get hurt, you can't work. My doctor wants me to elevate my leg at least 45 minutes of every hour. I am on my feet all day at work and even if I just pass meds, I need to stand in order to get the meds out of our cart so it isn't going to work out. I hope to be able to get disability while I'm off. I wasn't able to for my june surgery because I hadn't been working in california long enough but now that it is july, I think I will qualify. Even if I didn't have to worry about work, there is the stress of sitting around for 4-6 weeks doing nothing. What to do? I played wii, watched tons of stuff on netflix, wrote in my journal, made some phone calls, read, colored and played computer games. That was all on the first day. Now what??? I'm bored and dw is getting tired of me asking for things every five minutes. Yeah, used to try and do everything on my own and not ask for help. That was like three surgeries ago. I am worried about getting fat and out of shape. Please give me suggestions if you know how to work out without standing up. I need to do something! Maybe I will take this time to learn spanish. Maybe. I do hate studying but maybe if I mix the books in with some spanish soap operas it just might work.

So how did it happen? I hadn't been running since before my boob surgery for one reason or another. Tired from working, blister, lazy, etc. We went biking on saturday and dw is training for a triathlon so we decided to go for a run on sunday. We chose to hit the trails instead of the paved route around the lake. We have some beautiful trails nearby that are great for hiking or running in and go there pretty often. It can be steep and full of tree roots but it hasn't been a problem before. Even for dw who has bad ankles. We walked into the woods for the first five minutes to warm up then started jogging. My ankle actually rolled a little right away and I laughed it off and said to myself that I never get hurt...my ankles are so tough! Then ran another ten yards or so downhill and my ankle rolled so bad I didn't think it would stop and the pain was immediate. I hopped on my right foot until I came to a stop and haven't put the left foot on the ground since. So there we were, maybe 1/2 mile from the car in the middle of the woods, at the bottom of a hill. I tried hopping back to the car with dw supporting me, and then with a passerby helping but it was too hard. DW wanted to put me on her back and carry me but I wouldn't let her. I was in too much pain and didn't want her to hurt me or herself. I asked her to please just call an ambulance. That is a good sign of how much pain I was in because I hate asking for help but there I was begging for an ambulance. She had to go run back to the parking lot and try and get reception. Luckily, someone was there with a verizon phone and was able to get help. As I lay on the ground waiting, I wished that I had been carrying my pain meds left over from my last surgery. Many people walked past me and asked if I had help coming. A couple people just ignored me. Nice. Finally, the parks people rolled up in their mule (fancy golf cart) and carted me off to the parking lot where an ambulance came to get me. I was their second victim of the day and they treated a third as I got looked at by the paramedics. Busy day.

Once again, I have many people taking care of me. Especially my dear wife. I was already wondering what I should get for her for taking such good care of me in june. I was just starting to help out again at home but now I can do even less than before. She is waiting on me hand and foot. Kind of hard to even cook for yourself when you need crutches to get around. And I can't even take the dog out. It's hard enough for me to get myself down the stairs. Thank goodness she has summers off from work. I don't know what I'd do without her.

Seriously, I need to find some kind of cushion for my ass. It is killing me.

I am the lucky one

2011-07-17T20:49:00.000-07:00

I've always felt that one day I will win the lottery. It is my destiny. I lead an enchanted life. Always have. When I'd go to the carnivals and play the roulette games, I'd clean up on prizes. Once I went to see a college basketball game and bought a raffle ticket and won a $500 scholarship for college. Good things happen to me and bad things mostly bounce off of me. One time I was riding my bike home when I noticed a car up ahead barreling down a side street towards the road I was on. I had the right of way but decided to stop because I had a bad feeling. The car slammed on its brakes and came to a stop 2 lanes into the oncoming traffic. I have been hit twice on my bike by cars but both times it was just a tap and not enough to hurt me.

One year I almost died 3 times in a matter of months. I say almost because if things happened slightly different, I might not be here. The 1st was as I was just starting to turn left into a parking spot in a narrow alley when a car blew by me out of nowhere, passing me on my left. Saved from impact and sure death by a mere split second. The second time was when I was riding my bike to work and flew over my handlebars landing head first. Thanks be to something it was a rare day in which I was wearing a helmet. I may not have died but I'm sure it would have at least fucked up my weekend! (I have worn a helmet ever since). And the third was the bank robbery. Woman on my left killed, man on my right shot. I walked away with a bandaid.

Just yesterday I avoided a potential accident on my way to work bright and early in the morning. A cop car passed me with their lights flashing and then started swerving all over the highway. No one was in front of me and I was afraid he was trying to pull me over in some strange manner but turns out that he/she was just trying to stop traffic. Up ahead, in the lane that I had been speeding in was a car that had spun out and was blocking one and a half lanes. It was dark and the highway was curvy. The cop did succeed in stopping traffic and we all passed the accident safely. Luck runs through my veins.

And of course when it comes to cancer and this brca mutation, I am one of the lucky ones. My cancer was found so early that I always clarify to people, when they find out, that it was not "serious." Of course it was serious to me and my family and resulted in doing some things that I didn't want to but to the general public it is not the cancer that one thinks of. I did not lose my hair or throw up from chemo (just pain meds and anesthesia). I was never sickly. It hasn't spread. No one told me I was going to die. I didn't have radiation. I didn't even sacrifice any lymph nodes. I had just a touch of cancer in each boob. Just enough that I don't have to do much explaining when people find out about my double mastectomy. I just say I had cancer. And if they ask why I got rid of both boobs I just explain that I had it in both breasts. They accept that answer without any questions. My wondertwin and others like her don't have it so easy. They don't always know how to explain their surgeries. They even get some people treating them rudely because they don't understand why someone would cut off their boobs if they didn't even have cancer. Some cancer survivors or their families treat them harshly because they think they are trying to steal some of their sympathy, I guess? Who is to say whose pain or suffering is worse than another's anyway?! I have to thank my sis-in-law who always supported me during my diagnosis and surgeries despite the fact that her cancer was much worse than mine. Her "lumpectomy" ended up taking most of her breast and her cancer was stage 3 which led to radiation and some awful chemo. She never denied me my pain and anguish.

My poor sis just did a breast cancer walk and when asked at the registration if she was a survivor, she replied that she was a previvor. They looked at her like she was some kind of idiot and she walked away feeling very bad and alone in a sea of pink. But then she remembered that her friends, who raised $20,000 for the cause, were there because of her and for her. My sis and others like her have my utmost admiration. She may not get a pink t-shirt at the walks but I got her a much better shirt that I found at target. We all make tough choices in life. They are choices we have to live with and no one needs to judge us for them. Here is an article that some of you may find inspiring or help you justify your surgery decisions to others. And hugs to all of you going through something difficult.

post-surgery pics: unconstructed

2011-07-12T20:26:00.000-07:00

It's been 5+ weeks since my surgery. Wow, time does fly! I've already been back to work for over a week now and things are going well there. I was worried that I might not be ready for physical labor because I still haven't reached my full range of motion and I still have some sensitive spots left over from surgery. But I have to say that I think work loosened up things a lot. I haven't been stretching diligently so being active has helped. I don't know if it is a coincidence, but the loosening up also coincided with a decrease in sensitivity. Post-surgery, my skin around the scar, as well as in the areas that tissue was removed was painful to the slightest touch. I still have a couple of sore spots which could be bruising or maybe adhesions and just a little bit of tightness left across my chest. I go to physical therapy tomorrow and hopefully will get some exercises to do so I can get all my range of motion back. Other than that, I think I am all back to normal. Normal. As in pre-brca normal. I feel normal. Normal, normal, normal. It feels good to move on. No more doctors, no more tests, no more cancer boobs to check. Well, still need to feel the leftovers up once in awhile but really not much to worry about anymore. I do miss them in the bedroom but c'est la vie. It has not affected me mentally as much as I feared. I have not been horrified to look at myself in the mirror or walk around my house without a shirt on. We (dw and I) are already pretty used to the new look. It is a leaner, harder look. No fatty flesh up top. I look kind of like a prepubescent girl (with a middle age gut).

I have attached a bunch of pics, mainly for those who are also considering the no reconstruction route. I have taken some in a swimsuit and swim shirt because of something my previous surgeon said. She told me that many young women are not happy without reconstruction and that one of the things they were uncomfortable with was how they would look in a swimsuit. Ha! How many women really are comfortable in a swimsuit regardless of breast surgery??? I can say I've never been overjoyed in a one -piece. I only wear those to the gym and then pull my towel off at the last minute and melt into the safety of the water. Once in the water, I figure the distortion will make everything look fine. Don't correct me if I'm wrong. Other than that, I like to wear board shorts and a bikini top or shirt at the beach. I've tried on my bikini tops and don't think even the tightest sports bra type will stay put with much movement because there is nothing to hold it there. I think a tankini will work just fine and the surf shirt is a definite go. You can see my scar and drain scar sticking out from my one-piece but the fit is still good over all. If showing scars concerns you, look for a suit with more coverage. Also remember that the scars will flatten out and fade with time. As for t-shirts, the ones that were a little too big before are way too big now. My belly is more noticeable now, at least to me. It always stuck out a little. I think my sternum juts out a lot now but I know what to look for. I haven't noticed too many people staring at me like I'm a freak so that is a good sign.

lowering my expectations

2011-06-14T22:26:00.000-07:00

I've been reading cancer message boards and blogs on and off for almost two years now. I've learned so much from others who have gone through similar situations as myself. I've learned how lucky I've been, not only in my early diagnosis, but also with what great care I have received from my doctors, the hospitals and staff. I guess you could say I was pretty spoiled. And to be fair, my recent experience is still tame compared to some of the stories I've heard so I'll try and keep my anger from seeping into this story (but the disappointment remains).

Several months ago I meant to write a letter to my former hospital in utah commending the many fine doctors I had there and the good to excellent care I received during the 4 procedures I had done. Of course, it got away from me and after all this time, it probably wasn't going to happen. But the care I've gotten lately has renewed my interest in letting them know they should keep up the good work. I mean, who here has labored over a job with little or no feedback and wondered if your efforts were worth anything? When someone does a bad job, it usually gets mentioned but when someone does a good job, it often seems to be taken for granted. You may know deep down that you are doing great stuff but if no one seems to care, are you going to keep giving it your all? So anyways, I'll be following up this post with a thank you letter to my former hospital. And maybe, eventually I'll be sending a disappointment letter to my newest facility. I need to finish up my treatment there and let my anger dissipate.

I have been with my new institution since january as a result of a move and new insurance provider. First of all, let me just point out that not everything has been awful. So far I'm happy with my primary care physician. Even though she is pretty new to doctorhood, she is pretty responsive to my questions and concerns and isn't afraid to bring in the specialists when needed. She is even familiar with brca mutations. I've seen her a couple of times and it was pretty prompt and unchaotic. I appreciate that. I haven't had to fight for my surveillance tests, or bug her to follow up on any promises. So yay her and her department.

Secondly, yay radiology! They caught my newest cancer. That is the most important thing of all. The images on my mri were of little significance however they factored in my bc history and my mutation and despite thinking that all would be benign, decided to run more tests. So it ain't all about saving money at this place. And looks like I didn't have too much more time to fuck around. My final pathology came back as noninvasive but it was the highest grade and I'm not sure it would have remained tame by the time my next test was due. So yay to them, I am grateful.

Thirdly, I really appreciate my certified diabetes educator and her department. She is awesome, speaks like 5 languages and runs all kinds of programs for all kinds of diabetic folks. She understands the complexities of the disease. How it is not as simple as counting carbs and injecting insulin. It can be a mind fuck. And when I started seeing her, I learned some new things and brushed up on some old things and started to get my diabetes on track. But as the time got closer to cutting the bitches off, I fell off that track. And she was there. Not to scold me but to find out why. And she understood why. I'm a comfort eater and I needed some comfort. As surgery got closer I ate more and more. And it fucked up my blood sugars. She was only a phone call away and she had this tricky way of getting me to promise to call her each week on a specific day. She is a wise one and is used to us slippery diabetics. And she knows how stress can really mess us up so she focused on just getting me to surgery with some decent numbers despite my eating habits. And she helped me after surgery when my numbers were fucked up because of surgery. And now I'm back on track, and no infections have gotten me yet despite the diabetes. So yay her.

And now on to the surgery department. Ugh. I knew better. I had my misgivings from the first day but I was worn out with this fight and just wanted to get things done with. I thought about going to a different, smaller facility within my provider but I didn't want to go through the effort. This department is large and chaotic. Information does not flow freely and I had to fight for every little tidbit of info I could get. I had to call and ask about what drugs they wanted me to stop before surgery and when. They didn't list any of the herbal/vitamins I was on which worried me, especially since I bled so much after my biopsy so I discontinued those on my own. They never officially sent me anything with my surgery date so I worried that it wasn't really going to happen. I saw my doctor once before surgery in her office and we left many things up in the air. She didn't follow through with any of the things she was going to look up for me. I searched for weeks on any info I could get on the sentinel node biopsy and whether that was the right way for me to go. I spoke to her nurse twice about it and she said the doc would call me but it never happened. I finally emailed her with some questions and she answered two out of the five questions. Where I wanted a discussion, she gave me her decisions. I don't know why this upsets me. It is typical of what you would expect from a surgeon. Maybe I'm angry because I assumed she was like my last surgeon. Shit, they don't make many like her. She still gives me the time of day even though I don't even live in that state anymore. My wt calls my new surgeon a bitch because she's so loyal to me and knows how upset I've been. Honestly though she's not a bitch. She is nice in person and at our one office visit did let me do most of the talking and tried to answer my questions. It's just that she is pretty inaccessible and doesn't have a lot of time. No yay for her or her department and I haven't even gotten to the surgery yet.

The surgery time is given the day before surgery and I asked a couple of times if they were going to try and have mine early because of my diabetes. I was told that priority is given to the elderly, the very young and diabetics and they would do their best. So when I called and was given the surgery slot of 2:45pm I was upset. As anyone knows, the later in the day you are scheduled the more likely it is that your surgery will be delayed. I don't use my diabetes to try and get out of things or as an excuse for anything and early surgery slots are like the only perk I look forward to. Ideally, you want to go into surgery with a blood sugar between 100-150 so that you don't drop too low or raise too high. One can kill you and the other can cause complications. So fasting after midnight and up until surgery is stressful. It is hard to control your sugars when your routine is unlike any other day of the year. And of course, my surgery got pushed back to 5pm. I wasn't happy at all. Amazingly, my blood sugars were great during the actual surgery even though they were a little high all day. So yay to the anesthesiologist! I was still awake as they prepped me on the table and started doing the timeout before surgery started. This is when they make sure they have the right patient and are doing the right procedure, etc. My doc was going thru the list and announced that I wasn't diabetic so they didn't have to worry about that. Lucky for me two or three voices spoke up and said I was. Boo doc.

The rest of my boos go to the hospital. I was brought up to my room around 8:30pm and my sugar was still ok but starting to creep a little high. Mostly because of stress and because of surgery, throwing up, changing my insulin doses because of the fasting. You name it. The nurses checked my blood sugar once more before bed, gave me a little bit of insulin and that was it for the rest of the night. I guess the policy in place is to check blood glucose before meals and bed. That would be ok in a normal situation but not after a day like mine! I woke up around 3am and tested at 298 and called my nurse. Someone came in and I let her know I wanted to get up, I wanted pain meds and my blood sugar was too high. The nurse came in and took care of everything but the blood sugar. I should have said something but from my past experience in hospitals, the doc would probably say wait until breakfast to make adjustments so I let it slide. Then I woke up at 6am and tested in the 400's. What does that mean? Means I'm lucky I didn't slip into a coma from my sugar being way too high. I think that it was twice as high as when I was first diagnosed with diabetes. So I dosed myself with my long-acting insulin, called dw and instructed her to bring me some breakfast since the hospital wasn't going to feed me until after 8am (40 hours without a meal) and dosed some short-acting insulin to get my sugar down. I then dosed some more insulin when dw got there with my breakfast. About an hour later the morning nurse came in and tested me. Still high but starting to come down. She was a little surprised that I had given myself insulin and had eaten already. Usually, I give them the courtesy of getting my meds because I don't want to get anyone in trouble but I didn't care at this point. They should have been testing me every 2 to 4 hours if you ask me. My surgeon came in just as I was about to get discharged. I told her real quick how bad my sugars were and she said oh, we should do something so you don't end up back here. I "joked" that I was never coming back and we left it at that. Really, they should have tested me for ketones with numbers that high but I made it home and seem to be in ok condition now.

One and a half thumbs down for the hospital. I have to give them a half thumb up for always answering my call button right away and my resident doctor was pretty good. The morning nurse was also very nice in going out of her way to print me up some post surgery exercises and to get me out of there quick cuz I was in such a hurry. So far, one thumb down for my surgeon. The other thumb will depend on how nice my scar looks after this tape finally falls off and I can get a look at it.

Well, thanks for letting me get that off my chest (ha ha)! I'm tired of bitching all the time lately and want to go back to the days of going on beautiful hikes and posting nice pics. I will post some pics of my scar after the tape falls off so my brca sisters who are thinking of no-recon have an idea of what to expect. Thanks to all my family and friends and everyone else who has supported me through all this and stuck by me. I'm almost done whining, I think:)

a bitch of a patient

2011-06-08T21:18:00.000-07:00

What makes me a bad patient is exactly what makes me such a good caretaker. When I'm the one that needs help I'm a bitch. I have no patience. You can see my frustration written all over my face. I don't follow all the rules to get better. I want to be better now and do normal things now. I want to be in charge and don't trust that you know what's best for me. If things don't go the way I expect or want, watch out. I guess I'm more of a control freak than I thought.

When my residents are upset and swearing (most of them don't go this far) or complaining or bemoaning life, I do not react. I remain calm, I don't take it personally or lash back at them or stiffen up. I get it. I let them speak their mind and I show empathy. Then I try and find ways to make them feel better about the situation or themselves. Of course when things go wrong for them it's on a more permanent basis than me, but I can imagine their pain. I've had enough surgeries now in the last couple of years to burn it in my head that I don't want any more. Can I get a "fuck yeah?!"

Don't worry, nothing has gone wrong with my recovery so far. I'm just reliving surgery day (dw says I was much nicer after the ativan) and some of my frustration today when I couldn't go to a post surgery physical therapy workshop that I had hoped to. Of course it is too soon for me to be doing some real physical therapy. I still have my drains in and my steristrips on. My incisions are probably not sealed yet - I have yet to see them. I don't want to tear any stitches or wreck my scar or have to start the healing process all over. But that didn't keep me from hanging up on the physical therapist or bursting into tears of frustration afterwards. I didn't stay down long though. Called a friend who lives nearby who I met in cna school. Luckily she is back in the states and still as free as a bird so I will chill with her tomorrow. And it is nice out so took a stroll around the neighborhood. I am fortunate to be living in an area that is within walking distance of just about everything. I put my contact lenses on for the first time since before surgery and tee shirt and shorts. Dressed like a human being finally! I will need help getting this shirt off tonight though! Placed a hat over my greasy hair cuz I just can't manage taking a shower on my own yet and hit the streets. My first time out without something bulky to hide my flat chest. A panhandler called me beautiful:) Gotta love them! They will say the nicest things to try and get some change but it still felt nice that even with my ball cap and flat chest that he could tell I was a woman! DW got home from work and we took another stroll by the lake and got some tacos. It was great to be out among the people and not enclosed by 4 walls. Then put an old, favorite movie on, Blue Crush. Surfers, hawaii, cute actresses...turn that frown upside down!

on my tip toes

2011-06-05T16:10:00.000-07:00

I'm home. Back from the long dreaded surgery. The bilateral mastectomy. The girls are gone for good. The anxiety is gone. The tears are gone, at least for now. I'm calm, sleepy, a little fuzzy, a little sick to my stomach today. It's kind of a comfortable state to be in as I sit here and try and write, fighting the urge to close my eyes. Yet, it is ok to take another nap. Nothing is expected of me and dw is taking good care of me. I have good thoughts and well wishes pouring in from all over the country. Friends and relatives helping out close by. Rugby 7s on tv, books and magazines galore. Good food and treats nearby. Short walks with the dog.

I feel pretty good. Hoarse yesterday from the anesthesia and breathing tube but much better today. I've already switched from the pain pills to straight up tylenol because I think that is what is making me feel dizzy and nauseous. I am more in discomfort than in pain and most is in the armpit area probably due to my drains. I can feel the plastic tubing under my skin which is odd. I have limited range of motion but can lift my arms up over my head a little. Hence, I am standing on my tippy toes to reach things. Nothing heavy, just to grab a toothbrush or the like. I am already cleared to do some easy stretching. My recovery will be much easier than most because I have chosen not to have reconstruction, aka, I'm flat.

Yeah, I've come a long way in this journey. Initially I was dead set on getting diep revision. That is when they make new breasts out of your belly fat. I wanted realistic looking boobs that would grow or shrink as my body fat did and would be warm or cold depending on my own body temp. After my hysterectomy, I changed my mind about adding more scars to my body and undergoing such a major operation. I thought about going the expander route and getting silicone breasts, like my wondertwin. Hers do look nice and all but I just don't have it in me to go through that tedious process of fill after fill and yet another surgery. And I want to avoid any cutting or manipulation of my muscles. So here I am trying out life without boobs. I can always change my mind and get reconstruction later. So far, so good. I imagined myself waking up from surgery and not wanting to look at my chest. Or else, taking a look and bursting into tears. Neither one happened. First chance I got, I went into the bathroom, stripped down and opened up the velcro bra they had put on me. There was a bunch of gauze underneath that happened to fall out into the sink so I threw it away and threw the bra away while I was at it. I don't look so bad. I have a long steriostrip (tape) going across the length of my chest covering my incisions. A little bit of bruising and some pen markings left over from surgery. They never do clean you up very good afterwards which always bothers me. You'd think they could wipe off all the gunky tape residue and yellow stuff off of you since it's a little hard for us to get at. So what's it look like? I will post pictures eventually when I feel motivated enough to get out the camera and download them to the computer. I am used to seeing a flat chested woman since one of my residents is flat so maybe that is why it looks ok to me. I look thinner, and fit. Not that my boobs were huge but they added curves to my body. Now it is flat and you can really see where the sternum is. The tape is nice because it hides the scars and distracts you from the fact that there are no nipples. I think it will be more of a shock when the tape comes off and all is revealed but I'll worry about that later. Right now I'm ok and relieved that I am done.

knock me out already

2011-05-22T20:33:00.000-07:00

Time speeds by in slow motion. That is how it feels as I await my bilateral mastectomy, almost two years in the making. Less than two weeks to go. The two longest yet shortest weeks of my life. I know it will be here before I know it. I will wake up surgery morning and won't believe that it is finally time to cut the bitches off. Each day drags on with most waking moments preparing myself for the aftermath. Maybe the days feel long because I don't get much sleep. Partly from insomnia and partly from working the night shift this last month. I don't want the day to come but at the same time I just want it to be over already. Knock me out and wake me up when it's done.

I'm not in my happy place. I'm not following my own advice on how to handle stress. Not exercising or getting enough sleep. Feeding my stress with junk food. Not living in the moment. Almost two weeks to get my shit back together. Had a good three day string of events starting with a run, a bike ride and a beautiful hike. Need to keep it going. Still having a hard time breathing. Like I'm on the verge of hyperventilating. Trying to calm myself down by remembering all the great snowboarding days of last winter and the awesome summer I spent working at the gardens. I was in the zone there. So calm. So at peace. Living. Breathing.

sob

2011-04-25T13:21:00.000-07:00

SOB

Shortness Of Breath. Son Of a Bitch. Sob (as in cry). Time is drawing near to the BIG day and I have a lump in the back of my throat and tears leaking from my eyes. I read a blog post about another woman's experience on her BIG day. She is done and happy to be home after her pbm. I have heard many of you say how relieved you are and how the buildup to the surgery is so much larger than it should be. That it will be ok and I will be happy afterward. But how did you make it from the Before to the After? How did you make yourself get out of bed that morning and get your legs to move you out the door and all the way to the hospital? How did you force your way through the doors and past the receptionist, the waiting room and into pre-op? How did you keep yourself from ripping off the iv and jumping off the table and running until you couldn't run anymore?

It is the running from it that I am most tired of. I am out of breath, bent over, hands on my knees gulping for air, searching for a bench to rest on. I passed my first post-cancer mri, then my first mammo. Did I feel safe? No. Always more surprised than not when nothing was found. Was I being paranoid? Ha, if so I was not the only one. I talked to my former surgeon to discuss some questions I had about my recent diagnosis and she was happily surprised that they did not find any more cancer in my bad boob. Never did do my radiation therapy but that would not have helped the (formerly) good boob. They don't treat good boobs with radiation. They'll cut the whole thing off but won't radiate it. So here I am. Tired of running but wanting to finish the race. Just need to figure out how to get to the start line on race morning. Any tips are appreciated.

Sometimes I'm calm about the whole thing. I was talking with a resident a few days ago. I was assisting her with her shower. She is missing a boob from cancer some 20 years ago. Now she is nursing a bruised boob with two biopsied lumps that are cancer. She will find out today when her surgery date will be. She was so calm, matter of fact about it and so was I as we discussed it. She said I was too young for cancer. And she is too old to go through it again. She said it calmly, with a smile on her face that she was not looking forward to the surgery and pain. And I said I know as I held her hand and smiled back. I told her it is probably not as bad as when they took her first breast. Things are different and not as invasive. They spare the muscles. She isn't worried about dying. In fact, she said several times that she hopes she will be dead by the time she heals from this. Doesn't want to live to be 100 (but getting very close). I hope at her age she will be spared chemo and radiation. She is the only resident I've told about my cancer. I don't like to share my problems with them. They have their own worries and I don't need them worrying about me. I think my secret is safe though. I saw her later that evening and she has forgotten our conversation. Short term memory is not a strong feature when in the 90's!

death is natural, most of the time

2011-04-16T11:49:00.003-07:00

Feeling a little blah today, or meh to borrow a word from a friend. We lost another resident yesterday. When I say "lost" I mean he died. This is not unusual for my place of work, an assisted living community. To borrow a phrase from one of my residents, this is the last chapter of their lives. The paramedics are called here on a daily basis for one reason or another.

It was different this time. The resident decided to go sooner than later. I'm glad I'm not the one who found him. Much more unsettling than finding someone who looks like they are asleep. I cannot begrudge him for his choice, although his choice has shaken up the staff. He is not the first person I have known to choose suicide. I've seen it in high school and again in college. And as always, it leaves you wondering what you could have done to make them choose differently.

Many times I have heard folks say they are ready to die, yet they don't make that choice to make it happen. I'm talking about folks in their 90's and even up into 100+. They don't seem afraid of death. More like they are looking forward to it. Many of them have their dnr orders in place. Do Not Resuscitate. We did have someone over 100 years old who's heart stopped beating. As it happens, her daughter was with her at the time and asked that cpr be performed. It was, but she died later at the hospital.

Have you ever thought about how long you want to live? Would you want someone to give you cpr when you are 100? One thing I do know is that we all will die someday and we will die of something. One of my residents who has had his share of hospital visits and often laments his lost abilities says it was better in the old days before all the medicines that prolong life. He says you died when you were supposed to. Now you sit around and wait for it. I didn't comment on that because I am someone who cheated death. If I didn't take insulin I would have been dead probably 26 years ago. He has a good point though. At what point do you decide to stop taking all the drugs that are getting you through each day? When will you decide your quality of life is not worth squeezing yet another day in?

Choices. You can't live with them but you can't live without them.

And the week gets tougher. We lost another one today. Luckily I was assigned to him yesterday so I got to see him one last day. He was on hospice so it was expected but he was a young one so it makes it harder. He kept asking for watermelon but the kitchen didn't have any so yesterday I brought some in for him but he wasn't eating anymore. Today I ate the watermelon and thought of him, in the place he wanted to be.

Yes, a tough week overall. We lost three people, one of my favorite residents finished recuperating (good for her) and returned to her house and another of my favorite residents put herself on hospice which means it won't be much longer. I told her today that I was happy that I got to know her and she said the same. She told me she loved me and wanted to take me to heaven with her. I said I wasn't ready yet so she said ok, maybe in 20 years! We'll see;) Might not be ready then, either.

the big day is finally over

2011-04-06T23:55:00.000-07:00

The big day is finally over. Not the BIG day! Just the big day. Test number 2 for my anatomy and physiology class. We've spent the last 7 weeks learning the bones and muscles of the body, their actions, origins and insertion points. These last 2 weeks or so I've spent a lot of time studying. Time to put the books away (at least partially) as I focus on other looming priorities. I guess the most urgent is doing our taxes. I always leave it to the last minute! And then of course is this year's tour de cure bike ride for the american diabetes association. Haven't been training or fundraising much but the ride is less than 4 weeks away and I need to get my butt (gluteus maximus, gluteus minimus, gluteus medius, etc) in gear if I'm going to make my goal of 100 miles.

I am happy to have so many things to distract me from what is also looming over my head. Less than 9 weeks until my bilateral mastectomies. It will be the week after finals. I set the date a couple of weeks ago. I have been very calm but when I hung up the phone I had a momentary breakdown. It certainly is real now and I don't see myself backing out of it this time. I'm getting ready to let my boss know that I will need time off. April is going to fly by and then surgery will be just 4 weeks away so I need to warn them. Things are going really well there and I've proven myself and helped out during a couple of crunches. They are trying to find the time to train me as a med tech (promotion) and most of the residents love me. I'm enjoying being part of a team again and I love most of the residents too. I've also learned that my company has a nation wide program in place to financially help out its employees during times of need. Actually, it is a program that is funded by the employees so I guess I should start contributing a little something from each paycheck. I'm hoping to be able to apply for a little bit of the wages I will lose during my time off. That will take a little bit of the sting out of sitting around on my ass recovering from surgery.

Spring is definitely here in the bay area so I'm going to get out there and enjoy it. I hope you all will be seeing spring soon in your neck of the woods!

national social workers month

2011-03-30T09:55:00.000-07:00

I just found out march is national social workers month. Well, the month is almost over but never too late to recognize all the great social workers out there! My baby sis is a sw that works with teens in a high school. I think most of us can imagine how tough a job that is as well as how needed it is. I took advantage of the breast cancer sw at the big cancer house when I first started this ordeal. Let me tell you again how much it helped. We had a sw at the nursing home I trained at to get my nursing assistant certificate. If anyone could use a social worker, it is the elderly! They are dealing with so many issues: financial, death and dying, loneliness, health, physical and mental changes...

I have to admit that before I saw a social worker myself, I didn't really know what exactly they did! Here is a good explanation (below) that I've copied and pasted from the livestrong blog:

Mar 30

Got Oncology Social Work?

by Guest

It’s National Social Worker’s Month! Social workers improve the quality of health care by being advocates for people who need help addressing serious life challenges and exploring options. Below is a note written by the President-Elect of the Association of Oncology Social Workers.
“I wish I had known you were here sooner.” That was an oft heard heartbreaking message I heard from patients and family members as an Oncology Social Worker. Here is the deal: (start eerie music..) Oncology Social Work is shrouded in mystery in many cancer treatment centers. I could have neon posters, flyers and brochures promoting Oncology Social Work (OSW) services and they were too easily passed over for the medical information available in a resource room. That was my rude awakening when I was lucky to score a full-time job in a physician practice in Austin in the late 1980′s. Cancer treatment was just moving out of inpatient settings for many patients, and physicians discovered the need to have a Social Worker on site to address the issues that often fall through the cracks in a medical setting. I quickly developed a lot of humility recognizing that people were not at the oncology clinic to visit me! The much more urgent medical needs trumped my offerings for good reason.
Who needs an OSW, anyway?
At the risk of academic boredom, Social Work theory views a person within the multiple systems that define their lives. We view a person’s constitution as a result of their communities, homes, families, schools, spirituality, job status, financial situations, friends, etc. When making an assessment, a SW cannot separate a person from his/her environment. This is the most important distinction one can make about how a social worker can be of help in a medical setting. Cancer can devastate one’s life upon diagnosis. Even if a person is feeling well, most of the treatments they will undergo will create challenges in their day to day lives. There are significant emotional reactions as well, for a patient and their loved one. There are practical concerns like managing to continue in ones role prior to diagnosis: Will I be able to work? Will I be able to take care of my children? Will I be able to stay in school? How will my family cope with my illness? How will my illness affect my financial situation? Will I be disabled? Will I be disfigured? Am I eligible for any support services? What if I cannot drive myself to treatment? What if I have no insurance? Should I apply for disability? Will my doctor discontinue treatment if I cannot pay? These are concerns that can be addressed by an OSW. As well, a good part of my practice is spending time with caregivers and loved ones of patients. Matter of fact, there was a consensus among the couples I worked with that posited that the cancer experience is harder on the caregiver/loved one than it is on the patient.
Can we talk about that Elephant in the Room?
“I am not satisfied with my doctor but I am afraid if I change doctors he/she will be mad.” “I intend to live to 100, but just in case, can we talk about what my disease will be like at the end?” “I want to create a legacy project for my infant daughter, should I not survive.” “My sex drive is on a road trip somewhere, how can I get it back?” “I am so exhausted, I am thinking of quitting treatment.” “Would you help me write my will and get power of attorney documents?” “My friends say I look great since finishing treatment…. Why don’t I feel so great?” Oncology Social Workers are counselors. Most have a master’s degree in Social Work and a tremendous amount of expertise in therapy and counseling. Due to heavy caseloads, most OSW’s focus on brief format counseling and group work which is most compatible with people with cancer. The shock, anxiety, fear and grieving can be addressed by an OSW. Should more significant needs arise, your social worker can refer you to a professional in the community. Good news is that most OSW’s salaries are covered by the physician practice so there are no charges for OSW services.
Get a hug- Give a hug!
March is Oncology Social Work Month! I hope you learned something helpful, and I appreciate the opportunity to toot the OSW horn in this blog! Oncology Social Workers are also available at LIVESTRONG, via the helpline 1-855-220-7777, online and the new Patient Navigation Center in Austin.
Ann Fairchild, LCSW
President-Elect
Association of Oncology Social Work

one of the many places that can help

2011-03-25T11:32:00.000-07:00

According to statistics, almost no american will get through life without being closely affected by cancer. Whether that means you will get cancer or a family member, and no doubt some of your friends and colleagues. There are many places that can help you get through a cancer diagnosis and treatment including state and local agencies, american cancer society, komen, avon, livestrong, hospitals and schools. I received a lot of free help at my local teaching/university/hospital in utah. I've pasted today's livestrong blog below because it shows some of the ways it can help you. I'm not sure how their services work for previvors, but it is worth checking out.

Navigating Treatment Options

by Guest

Herb called because the doctor told him to “get his things in order”. Steve emailed because he had no idea what his doctor said. Larry said he had no money to pay for his chemotherapy. Peggy called because she was so depressed that she couldn’t get out of bed. And Jennifer couldn’t make her doctor understand that she was worried about a recurrence.
All of these people got help through ONE phone call to LIVESTRONG Navigation Services. Most people ask, “What are “Navigation Services”? The answer is simple…..they are just fancy words that mean “We can Help.”
Herb is receiving ongoing consultation with a cancer nurse who told him there was hope and she helped him get a second opinion. He is currently excited about the clinical trial that he is enrolled in and hopeful that he will be around to see his grandchildren.
As a young man, Steve was especially concerned about how prostate cancer treatments would affect his quality of life. He received extensive education sessions and working with a cancer nurse, he created a framework to make his decision. He completed his treatment and has no regrets about his decision.
Larry didn’t realize that there were financial and insurance counselors to help him apply for assistance. He is currently undergoing treatments and getting most of it paid for.
Peggy was so overwhelmed with sadness that it was affecting her family. She is now talking with counselors at LIVESTRONG and signed up to get a peer mentor to share her journey. And Jennifer decided that she could talk to her doctor after all, without being intimidated. She did and got the results that she wanted – she is scheduled for an MRI sooner than planned.
A cancer diagnosis is difficult to face and very difficult to understand. The medical terms are like another language and the treatment choices make you dizzy; all this at the very same time you are afraid and anxious if you are going to live or going to die. Finally, getting cancer costs a lot of money and most people don’t have enough. LIVESTRONG and their partners are here to “navigate” you through this overwhelming situation that cancer creates.
LIVESTRONG partners with the NavigateCancer Foundationto provide you with free consultation services about your cancer. NavigateCancer are experienced cancer nurses who are experts at helping you become empowered, educated and an active member of your health care team. They teach you about your specific tumor and about the options you can choose. They translate your pathology reports, scans and medical documents so you can better understand where your cancer is and where it is not. Most importantly, they help you weigh the pros and cons of these big decisions from a decision framework that they help you create. They will make you feel confident about asking the right questions and getting prepared to talk with your doctors. They will connect you to resources that you need to know about. And they will help you find a qualified doctor for a second opinion or be a sounding board to see if you are on the right track. They are with you for the journey; available both online and on the telephone.
The new LIVESTRONG Navigation Center in Austin, Texas will be a “one-stop” shop where the abundance of free services is only matched by the generosity of spirit you will find there. All are welcome; those that are newly diagnosed or those that are survivors, those that are caregivers or those who are family members, all can come to get help to navigate their journey away from cancer.
Sharon M. Bigelow, RN MSN ANP-BC AOCNP®
Executive Director
NavigateCancer Foundation

it starts now

2011-03-16T14:07:00.000-07:00

How many of you put off things because of lack of time, lack of money or maybe just lack of planning? You work hard, you're tired, you have a family at home that needs you, you're in school, you can't afford to take a trip, you don't have time to go to the gym, you'll do that next month or over the summer or when your student loans are paid off or, or, or...

Relax. Take a breath. Look at your life. Are you enjoying it? If not, what can you do to change it? Can you squeeze 30 minutes into your day to do something just for your enjoyment? It could involve someone else, as long as it is for you. Do you even remember what it is that you enjoy? Sometimes we forget what we like, especially if you are partnered and/or have kids or someone else you take care of. I dare you to find yourself again. I challenge you to enjoy yourself.

Do you have a bucket list? I've learned that there is something more important than the items you might usually put on a bucket list: those once in a lifetime dreams of yours. I think people forget about the ordinary things that are right in front of them. Enjoying the crisp, cool air only found early in the morning (while walking your dog) before work on a typical, muggy new york summer day. An ice cream cone later, that same day! The flowering trees as spring approaches. Donuts at work on a friday morning. Happy hour friday nite. Girls nite out. Spending time with the nieces/nephew. A belly laugh. A belly full of great food. A concert, or better yet, a free concert! A great song on the radio. A smile given. A smile received. The cry of seagulls. I could go on and on.

Some days I just don't have much time or energy. Luckily I have a dog that really doesn't give a crap how I feel. She still needs to go for a walk. And luckily, walking is one of my favorite things to do. It is a quiet time for me. A time to stop worrying about things and just enjoy the scenery, the fresh air and moving about. I also use this time to plot the rest of my day and make some goals for myself. For me, I've found what makes me happy: nature and movement.

I work with the elderly all day. I'm new at it but it's not hard to figure out what needs to be done to be happy as you get older. Many of these people were very productive. Doctors, nutritionists, social workers, teachers, mental health care workers. Now they are the ones being taken care of. They lose their feeling of self-worth. They can't do the things they used to enjoy. They can't move the way they used to. One women always says to me that she wants to kill the person that said "these are the golden years!" Even though she is one of the ones that can still do most things by herself. I ask her if she had fun in her life and she says oh yes, she had a great life. No regrets there. She has good memories. I have another woman who mostly stays in her room and complains a lot. Although lately she has said that she wants to stop complaining and will scold herself when she does. We try and get her out of her room even if it is to join in an activity for half an hour. The other day, someone mailed her a huge box of chocolate. She was so happy! She is pretty easy to figure out. If you walk into her room with a smile on her face, she responds with the biggest smile you have ever seen. Sometimes the grumpiest people are just afraid that no one loves them or needs them anymore. She used to be a caregiver back in the day.

What is my point? I have so many thoughts going through my head that it is not coming out very clear here. I guess my point is to enjoy life and enjoy it in the here and now. And realize that as you age, you may need to change the things you enjoy. I know I always say that I don't want to get old. Many of the things I enjoy involve physical activity. Things that I know I will no longer be able to do when I'm old. But maybe I need to rethink that. I have many interests and not enough time for them all. Just because I probably won't be snowboarding when I'm 90 doesn't mean that I can't enjoy other things. Maybe that is when I'll finally have time to learn spanish or the drums! Maybe instead of gardening I'll finally learn how to draw landscapes. Maybe when I can't work anymore I can be a mentor or a tutor if I still have the brain power.

I have another point that I'll try and squeeze in here. What you do now is going to influence you when you are older. How you use and treat your body is going to matter when you get old. Your body will thank you for the muscle and strong bones you're building right now! So many of the elderly I deal with have swollen, painful ankles. Some of it is from their drugs and some is because of their hearts. Remember the heart is a muscle. Get out there and use it. Walking will not only build up your heart, it will build up your bones. I know genetics and other shit play a part in how we age but still, get out there and treat yourself right. Don't have regrets. It starts now.

abort, abort!

2011-03-09T11:56:00.001-08:00

Things are going well in my life. I have a job and I love it. I'm taking a class, and I love it. I got 100 on my test (I did miss 10 extra credit points though) and I have a perfect score on all 9 quizzes so far. I'm interviewing for a 2nd job, one that will actually pay my bills. I love my job but it is barely more than minimum wage so I'm hoping to get the 2nd job which is only part-time and cut back on the 1st job hours. And do that til I gain enough cna experience to land a hospital job. Working as a cna in a hospital instead of assisted living will pay my bills. I look forward to the excitement of the hospital and being more involved medically. I will miss my elderly residents and the relationship I have with them. It is a true partnership we caregivers have with them. Sometimes we are the cranky ones and sometimes they are. Sometimes I teach them things, but often they are the ones teaching. And oh yeah, for those of you that have had cancer and worry about if it will come back and how long you might live because of it: so many of my residents bear scars on their chests. Some have lumpectomy scars and some have mastectomy and bilateral mastectomy scars. They are in their 90s and have had a full life! I don't know how young they were when they got cancer but I do have an aunt that had bilateral cancer well over 30 years ago and still alive. It does happen.

I feel calm as I ready myself for my bilateral mastectomies. I've had over a year and a half to wrap my head around the idea. Not that it doesn't make me sad, but I know that I'll be ok and probably glad to just be done with this whole trip. Bonus points for decent insurance because I don't think I will be spending much out-of-pocket for anything. That helps a lot. I've talked to god and asked him to send me a sign to let me know what I should do. He said "What the fuck, Janine! How many signs do you need? I've given you two autoimmune diseases, tried to give you colon cancer, gave you a mutation, and baby cancer in both breasts. I know I let you slide by without ovarian cancer but do you need me to rent a billboard that says ABORT THE BREASTS! ABORT THE BREASTS!?" Oh, I guess you're right, god. Let's do it.

So I've read numerous "lists" of how to treat a cancer patient over the last couple of years and decided it was time to make one of my own. Some of it is personal to me, but many can be applied to most of us.

How to treat a cancer freak:
Don't ask me how I feel: I'm not on radiation or chemo. I'm not sick. I probably feel just like you: not enough sleep, not enough time and not enough money.

Tell me I look great: I will need to hear those words over and over after surgery as my self-image is going to be in the dumps. So lie if you have to.

The "C" word: Acknowledge the cancer if you want to. If you don't want to acknowledge it, I don't care. I know it's a scary word and uncomfortable topic. Just don't avoid me because of it. I don't bite.

A year later: I had a friend recently get in touch with me and was apologetic for not talking sooner during my 1st go round with cancer. It's ok. I understand. I've done the same thing. My friends are my friends for life. Call me tomorrow or call me in ten years. I'll still pick up the phone.

Be direct: Don't ask me to call you if I need help after surgery because I won't. I'm too shy and too independent (stubborn) to ask for help. Instead, ask me if I need a ride, or dinner brought over or if you can stop by to visit.

Simple is great: If you want to say something, but don't know what to say, simple works just fine. I have a friend that sends me texts after I share my bad news. A simple "hi, just thinking of you" feels like a big hug.

No flowers necessary: Many of you sent me flowers or goodies last time. That was very sweet and appreciated but not necessary. A card is fine, or email or text or phone call. If you do feel like blowing money on me, donate to one of my causes. My wondertwin is doing the avon walk for breast cancer this june and needs to raise another $1,300. Me and dw are biking 100 miles in may for diabetes and need to raise $500 between us.

My other half: Please do ask my dear wife how she is doing. She bears the brunt of my anger and sadness as well as carrying her own. And if you are around and have time to spare, please do hang out with her during my surgery. Those hours in the waiting room can't be easy and I don't want her to be alone.

The door is open: Don't be afraid to "bother" us by calling or asking us to do things. Our lives are not on hold because I need surgery. If anything, we'd like to stay busy.

The same: Don't be afraid to treat me as you always have. I am the same person I was before this all happened.

that's just the way it goes

2011-02-23T00:59:00.000-08:00

Finally got my biopsy results back on friday. I guess 7 days is not long but when it took less than 24 hours to get my first biopsy results back 7 days feels like a lifetime. And they aren't even done yet. They still haven't tested it for er/pr/her2 involvement. So more dcis (the good kind of cancer). Noninvasive in appearance. Kid tested, mother approved... Sorry, feeling loopy after a tough day of doctor appointments. I do miss my old, smaller, calmer hospital in utah and my breast surgeon who treated me so well.

Got the call from substitute radiologist with my results. He started off blabbing on about atypical cells and I was a bit relieved thinking that was all I had. But he kept talking in circles and was mentioning dcis and I finally cut him off and said "are you saying it's dcis?" Yes. Then he started blabbing on about treatment options and how some brca+ women go so far as bilateral mastectomies so I had to cut him off again and told him I knew all about dcis since I've already had it. Oh, he didn't realize this. Thanks for reading my chart, doc! I was getting a little upset by now so when he asked if I had any questions I said no and hung up while he was saying goodbye. I'm sure I made his day.

I was very confused after talking with him. He said that all the pathologists looked at it and discussed it before deciding that it was dcis. It can be somewhat subjective to determine dcis and is often misdiagnosed. When I met with the breast surgeon today the first question I asked her was are they sure that's what I have? Still holding out hope that maybe I just had some atypical cells. But she said yes, medium grade dcis and 3 pathologists signed off on it so not much to question. Now hours later I'm thinking if it wasn't much of a question then why did 3 of them need to look at it? Regardless, it is time to do something. Looking back at my original mri from 2009, there was an enhancement in the same spot where they biopsied me this time. Back then, they wrote it off as nothing of concern. My guess is that is has been in me for years. They say it can take about 7 years before this stuff shows up on the films.

The doc says I can safely wait as long as 6 months to have a lumpectomy or mastectomy. That is the one good thing I heard today. Tomorrow is my first official day as an employee. I'm going in to fill out my paperwork and watch some videos. I have no intention of telling them that I need time off for surgery until I have established myself as a valuable employee. Plus I don't want to undergo surgery until my class is over. And it would be great to wait until June anyway because dw will be off from work. So I think it will be sometime in june when i will be cutting both bitches off. Time to get rid of them. I've been lucky twice only getting the baby cancer. I can't push my luck much more. Besides, I think my boob will look terrible this time with a lumpectomy because of where the dcis is. Might as well just get rid of it. And I am so tired of doctors and tests and procedures and waiting for results. So my biggest decision now is about reconstruction. I've already decided no flaps for me. I know I was set on diep last time but after my hyst/ooph I decided I didn't want to tear up any other parts of my body. Not keen on the whole expander process. I really, really don't have the patience for that! I would consider one-step implants but even then, not sure about it. Some people complain about not liking the way implants feel when they are doing active things and I'm a very active person. I know it could be something you get used to but I don't know. It's all such a bother. But if I decide not to have any reconstruction, the scars are worse because there is nothing to hide them. And I don't want to look like a boy. Some women still look really sexy boobless but I don't know what I'll look like. One good thing is that you can always reconstruct down the road if you change your mind. Such a bother. I wish they'd hurry up with that pig-boob study where they are trying to grow pig boobs by injecting them with their own fat. Probably some stem cell thing.

Been trying to find pics online of women who chose not to have reconstruction. Everyone says to look at breastfree.org but they don't have that many pictures. I remember seeing some once of a woman on the beach with her family and she looked awesome but I can't find it now. If you know of any good pics, please send them my way. I'm trying to get an idea of the different incision options and what looks best. And if you have a favorite kaiser breast surgeon in the bay area, let me know.

the incredible lost weekend

2011-02-16T23:38:00.001-08:00

Surveillance is a bitch.

Not all my readers are brca chicks/guys so I'll explain. If you are brca+ or high risk, you basically choose between surgeries (to lessen the risk of cancer), sticking your head in the sand (doing nothing) or surveillance (undergoing tests to catch cancer early). I have chosen surveillance for my breasts and surgery for my ovaries. This past month has really put me to the test. I had my mri about a month ago and it came back with a questionable area. So they recommended a mammo to double check and that too had the same questionable area. If I wasn't a freak (I mean mutant) then normal procedure would be to wait and see if that spot still stood out in 6 months. But since I've had bc, and I'm brca+, none of the radiologists were comfortable waiting. So in I went for a biopsy last friday. That in itself sucked. I turned down the valium because I don't like drugs and I don't find the actual mri that frightening. But damn, when that core needle went in, it hurt like a mf. I don't remember the first biopsy hurting, but maybe I have selective memory. They had shot me up with lidocaine, which in itself felt like a bee had stung my breast, but it didn't help much. Does anyone know if valium blocks pain, cuz next time I think I will take it. Some people don't like doing procedures/tests right before the weekend because it drags out the waiting process. For me, the weekend wasn't the problem. I had already made plans to have a fabulous time and it was even better than I imagined.

DW and I packed up the car and made our getaway right after my biopsy ordeal was over. We headed to the channel islands to meet a friend and do some good for the birds. Specifically, weeding nonnative iceplant to help restore a natural environment for the auklet. We figured it would be fun to check out the islands, enjoy nature and good company. It was so much more. The beautiful weather we'd been having lasted throughout the weekend. The nature was way more than we'd dreamed of! Starting with the boat ride to the island where we saw schools of dolphins (at least 50 in a pack) following our wake, arching out of the water in choreographed lines. Get this, our friend has been to the

islands so many times that she tires of the boat slowing down so we can enjoy the show! Not sure I could ever tire of that! Once on the island, we saw many tiny foxes running around, trying to steal food from campers. Sure, this I would tire of but the novelty is cool. I have seen fox before but rarely and never in this abundance. Set up camp quickly then headed to work on "the rock" which required getting into a zodiac and jumping out onto a pier-less rockface as the waves crashed against it. I could have done without that part, but a small price to pay for such an amazing place. Pelicans were cruising the ocean, flying in close formation, reminiscent of the blue angels, swooping up and down without crashing into each other. Cormorants flying around in chaos as kayakers scared them from their nesting sites in the caves. Ahh, the tidal pools! Never have I seen any this spectacular. Of course, I've never been snorkeling or diving so this was a treat for me. Starfish in multiple colors, anemones, urchins and more. Spectacular (did I say that already)! A sea lion playing around, oyster catchers, garibaldi. Damn, it was like being on fantasy island. Oh my gosh, I wish everyone awaiting biopsy results could pass the time like this. Most of the time I did not dwell on the threat of cancer. And when I did, I thought "so what if I got it again, this is so damn beautiful how can I be sad." I have a good life. It may be tough at times but I have been blessed with everything I have witnessed in my life.

Reality sets in on the boat ride back to the mainland. I have a voicemail that I can't open because of lack of coverage. I wonder is it the dr telling me my results? I know it's sunday, but maybe just maybe they know already. No, turns out just a hello from my bro. Monday, I miss a call from the dr, I hold my breath as I wonder is this when I find out if my life has changed? No, I reach the doc only to find out that he has no news. He just wanted to tell me that the path probably won't be in til the end of the week and he has passed my case on to a colleague because he will be out of the office. So I breathe easier the next couple of days - the pressure is off. I am somewhat successful trying to focus on other aspects of my life, such as studying for my first a&p test. My social worker once told me that she is able to push certain things out of her mind so that she can focus on the task at hand. I never thought that I could achieve that, thinker that I am, but I have been able to a little. I think it helps this time, the second time around, that I have other things to focus on. I have been running around getting all my pre-employment stuff in order: drug test, physical, tb tests, fingerprints. Yep, I said pre-employment:) I have been trying to study. I'd really like to get an A in this course. It's been distracting lately but I think I can do it. Got another call today, from the substitute doc on my case, right before my test. Do I answer it? I don't want to find out I have cancer half an hour before I have to take my test but I also don't want to wonder the whole time I'm in there, so I pick up the call. Still no answers but he will check again tomorrow and call again with either results or a date when they will have an answer. I have to hand it to kaiser. Although the place is huge and you feel like a number, my docs have been very communicative to me. My pcp called me 3 times one day to discuss the biopsy and make sure everything was on track and I was doing ok. 2 calls from the radiologists already just to let me know that they are still waiting on the pathology. I feel very cared for.

It has been easier the second time around. I don't feel the need to do more research. I have most of the answers. I know my options. I kind of know what to expect. I am experienced. But it has also been harder. Instead of falling into my dw's arms for comfort, I look at her and I feel like an ass. This is hard for her to go through again. She sits in the waiting room with the clangs and zaps of the mri machine echoing throughout the trailer and waits 2 1/2 hours for me to reappear. She anxiously awaits the results of this mri while I tell her to try and not worry. I have a gut feeling that they will find nothing of significance. I can't bear to tell her if it is something worse. She is tired of this and I don't blame her. I may have to rethink what I should do over my summer vacation.

just waiting

2011-01-31T10:07:00.001-08:00

Looks like I haven't posted in awhile! It's been a busy month. Still looking for a job. I have never filled out so many applications in my life with so little results. I guess the economy is still rebounding because I used to be able to get any job I wanted. At this point I have started to apply for accounting jobs again in addition to cna jobs. We'll see what I end up with. There are quite a few cna jobs out there but they all want people with experience and since so many people are looking for work they don't need any rookies.

I have become very familiar with kaiser in the month of january. As I expected, no free parking at the facilities here. I knew utah was abnormal. Every hospital there not only had free parking, but valet free parking! But I found street parking about a 5-10 minute walk away. I figure I have already saved $20 with the amount of times I have gone in this month. Been to my diabetic educator a couple of times and now I remember why I usually stop trying to control my blood sugars - it's damn frustrating! Our body is an amazing machine (as I've been learning in my a&p class) with so many variables going on and they all affect the diabetes. It is much easier to fail when you don't try then to fail when you are making an effort. Not that I'm failing all the time, my numbers are getting better. But there are some days where I poke my finger and I get a crazy high or low number that doesn't make any sense and I just have to say wtf?

Anatomy and Physiology class: it's been one week (2 classes - 6 hours). Loving it so far! This is good news since my biggest complaint about school is that I don't like sitting in class. But so far, I haven't been bored or staring at the clock or contemplating skipping or leaving the classroom to take some breaks. I've already picked up a brain with the spinal cord attached and dissected a rat. Best thing of all is that I didn't have to buy any books. My professor lets us use old editions so wt is sending me her text and lab book, saving me $314! DW has an old anatomy coloring book with hardly any of it colored in so I'm using that as well. That is one of my favorite books, since I love to color! I did decide to drop my chem class for now. I haven't been in school for a long time so didn't want to overdue it. I'm glad I dropped it since we have been busy moving. Now in oakland and enjoying it so far. The dog is adjusting to the grassless sidewalks and steep hills and is enjoying all the new smells.

Been busy waiting this month with this surveillance thing. I had my mri at last a week ago. I was pretty nervous since there was an area my bs was worried about. They didn't find anything there but they do want a closer look at my good boob. Now I'm waiting for my old films to show up from utah so they can compare the changes. Then I will need some new mammos taking a closer look at my scar site and the questionable area on my good boob. "Probably not something" is what they are telling me. Or if something, could be dcis. Again. They say don't worry about it, most likely negative or benign. What does that mean? Are they already assuming I will need a biopsy? Don't worry. They make that sound so easy. Do they not realize that is what they told me the first time? And now dw is worrying and she wants to know if I can really go thru this stress every 6 months. This is what I signed up for so I guess I can't complain.

Ha, no longer a cancer

2011-01-13T21:27:00.000-08:00

I'm not really into astrology, and I hate the name of my sign (cancer) anyway. So when I heard tonight that changes are in the works to change the zodiac signs I was not upset. According to the new dates I have been upgraded from a cancer to a gemini! I now join my little sis (and of course my wondertwin) in this wonderful, new-to-me sign. I've looked up the characteristics and looks like I am now compatible with my wife. That's a relief - maybe the next ten years will be even better than the first! Some of you will keep your signs while others take on a brand new, don't even know how to say it, sign: Ophiuchus (Nov. 29-Dec. 17). How do you all feel about that?

Yeah, cancer sucks. Just about a week ago I found out that my dad is now on his third cancer diagnosis. Breast, basal cell and now prostate. That last one is the one that killed his father right at about the age my dad is now. They both got breast cancer at about the same age as well. Like father, like son. Although my dad says his is very treatable and that my grandfather chose not to treat his. Not sure what he meant. Did my grandpop find out really late that he had a problem or did he have a problem and not go get it checked out? So spent some time this week surfing the acs website learning all about p cancer. I find myself understanding things so much more than when my mom got her cancer and when my dad got his first. I didn't know what any of the mumbo jumbo meant. Grades, stages, etc. There are about a million ways to treat prostate cancer and many of them depend on what the patient and doctor are comfortable with. I can sure relate to that.

For the last year and a half, I've known about my family history of cancer and I even have a genealogy chart showing it all. Despite that, the depth of it didn't dawn on me until my dad's third cancer diagnosis. Everyone in my family (blood relatives) that survived their first cancer has gotten a second cancer. That's on my dad's side. No one on my mom's side has survived the first cancer. What does that mean for me? Did I beat the odds by getting my colonoscopy early and getting rid of that precancerous polyp? Was that supposed to be my second cancer or is it going to be something else? Will I get brain or stomach or lung (probably not)? Will it be prostate (not!) or maybe basal cell or bile duct or colon. WT hasn't gotten cancer. She cut off her breasts and ovaries. Will that give her a "get out of cancer" free card? I wish that was guaranteed for her. Guess that is why it doesn't bother me too much that I still have my breasts because the worry doesn't stop even if I cut them off. But I need to stop talking like this cuz dw won't like it.

What I would like to do is find a cool gemini t-shirt and embrace my new sign:) So long, cancer.

fucking bastard

2011-01-09T12:09:00.001-08:00

Many of you have probably heard about the shooting that happened yesterday in Arizona at the local town hall meeting. This was just an informal meeting where the local congresswoman meets and answers her constituents questions. These types of meetings take place all across the country and are supposed to make our politicians more accessible and get the community more involved. And then some asshole comes along and shoots up the place. We'll probably find out that he is mentally incapacitated in some way. Really, he must be, otherwise why would you do something like that? He cut short 6 lives, injured several others and damaged all the bystanders and families and friends of those lost and hurt.

When I hear about shootings like this I do remember that day at the bank when I got caught up in a robbery. I still grieve for the stranger who lost her life and her child that was left motherless. That day did change me. That's the day that I became a proponent of the death penalty. I know that system has a lot of flaws, but I do believe that some people don't belong on this earth. Forgive me for my bitterness. Today I am angered and saddened by the loss of my friend's niece in this tragic shooting. I have nieces the same age and my heart goes out to her and the family. May they find peace and comfort and a way to get through this.

Christina-Taylor Green, 9-year-old killed in Tucson, remembered, mourned

By Krissah Thompson and Theola Labbe-DeBose

Washington Post Staff Writers
Sunday, January 9, 2011; 1:28 PM Christina-Taylor Green's short life was pinned between two national tragedies: She was born on Sept. 11, 2001 and died Saturday as a gunman apparently targeting Congresswoman Gabrielle Giffords (D-Ariz.) shot 20 people in Tucson.
Christina-Taylor, a budding elementary school politician, was among those killed. The third grader had gone to meet Giffords with a neighbor when a gunman, identified by authorities as 22-year-old Jared Lee Loughner, opened fire at a political meet-and-greet outside a grocery store. She died at University Medical Center.
Christina-Taylor, who had big brown eyes and long brown hair, had recently been elected to the student council at Mesa Verde Elementary School. She had been interested in politics from a young age, her father, John Green said Saturday night in an interview with the Arizona Daily Star.
She was a good speaker, athletic and patriotic, her mother, Roxanna Green, told the paper. Christina-Taylor was inspired by her birth on the day of the 9/11 terror attacks, her family said. She was one of 50 babies born on 9/11 featured in a book called "Faces of Hope."
"She was born back east and Sept. 11 affected everyone there, and Christina-Taylor was always very aware of it. She was very patriotic and wearing red, white and blue was really special to her," Roxanna Green told the Star.
As a student council member, Christina-Taylor would have been a leader in her large school district. In the past, elementary school students who were elected to student councils had attended school board meetings and led the pledge of allegiance, said Jeff Grant, Board President for Amphitheater Public Schools - a district of 15,000 students.

Grant described Mesa Verde, which has students from kindergarten to fifth grade, as a very close-knit community. "It's just a tragedy that I think the entire community is in the grips of right now," he said.

Her father John is a scout for the L.A. Dodgers and her grandfather is former Major League pitcher and ex-Philadelphia Phillies manager Dallas Green, according to ESPN.
The elder Green managed the Phillies from 1979-1981, winning a World Series title in 1980. He went on to manage the Yankees and the Mets.

vacation is over

2011-01-07T22:21:00.000-08:00

Little sis-in-law left this morning to head back to her home state. She was here for a month visiting while her friends were on college break. DW headed back to work after two weeks off for the holidays. And I am officially off my self-sanctioned five month break from doctors as I transitioned from one state to the other, one insurance to another. I moved here in october and didn't bother getting new docs since I knew I was switching insurance to kaiser. Kaiser, if you haven't heard of it, is a bit different than the normal insurances like bcbs. They have their own system, own docs, own way of doing things. Seems scary at first just because you don't know what you're getting into. But it is an hmo and that means potential big savings for you, the patient! My plan seems pretty good so far: free diagnostic crap like mri, x-rays, etc with no copay. Low copay to see the doc, decent prescription costs. And they really like to treat the chronic diseases like diabetes. "Thrive" is their motto. They have a ton of diabetic programs, with educators and nutritionists and the works - all for free.

So saw my new primary doc this week. I needed to get all my prescriptions renewed and of course, get that breast mri ordered:( New doc is very nice, listens to me, seems fairly knowledgeable about my conditions. My apt was mostly just her entering all my info into the computer. Took at least half and hour to get all my drugs and family history in. She just came back from holiday skiing at park city- bitch (ok, I'm being jealous). She has an interesting background in that she works half the time in the internal/family medicine office and the other half in the ob/gyn office. Not sure what that's about but sounds good for my needs. Brought some old lab reports with me and of course she sees that my diabetic control is not where they like it so suggests seeing the endocrinologist. It is something I have thought about so I agreed to it. Said she'd talk to the gyn/onc about follow-up care for my surgery and managed to throw in a question about tamoxifen and mastectomy. I brushed those questions aside gracefully and she let them fall to the floor but I'm sure they'll be brought up again especially if she gets her hands on my records from my breast surgeon. All in all, I'm happy with my choice so far. Kaiser does everything on the computer which is super cool. You can see a profile of all the docs to choose from and most of them have a personal page where they write a little intro about what they like, how they practice medicine and some of their beliefs. You can also send emails to your doc and I've already taken advantage of that. That is one thing my other docs did not do but is a really nice feature. Had labs taken on Tuesday and was already getting some results back the next day online! Sweet! No more waiting. I'm very curious to see how that works with my mri. Will I get to see my result online (good or bad) or is that going to be delayed? Would you rather get a phone call or find out when you're surfing the web that you might have cancer? What if you're standing in line for a latte, checking your iphone and notice that your ca125 has hit the roof - would you order it anyway or run to the liquor store instead? You know me, I'd get me some ben & jerrys and some apricot beer.

Saw the diabetic educator (cde) today. Yeah, wondertwin, thought of you! She was trying to talk me into going to a series of classes since I'm not working and have some time. Is there nothing I hate more than sitting around in a class learning stuff I think I already know?! So I said not now, thanks. Talked about what I think my problem is and I said I need someone to hold me accountable to which she said, "oh, you don't want to own your diabetes?" Touche...made me remember that I am 42 after all. Guess it is time to grow up and be healthy without anyone nagging me into it. And the bonus would be (besides everlasting health) that I could stop seeing the damn docs so much. Yes, new doc has already said that if I work with the cde and my numbers get better than she won't be seeing me around so much. Sounds good to me cuz I am already burnt on this doc thing and I just started back this week. Seeing the nutritionist & cde in a couple of weeks right after my mri and I also need to schedule my first bone density scan. Wouldn't it be nice to only go in three times a year? One pelvic, one mammo/cbe and one mri/cbe. Time to buckle down and get serious.

reflections

2010-12-30T22:38:00.000-08:00

The year has managed to slip past us once again. And once again I am glad it is over and looking forward to the new year. More so this year because I'm looking forward to change and progress rather than trying to forget a shitty year. Because 2010 was not so bad. Well, parts of it were but the mid-to end were pretty good. I think I've finally found "normal" again or at least have gotten used to my normal. You know you feel better when you now think that winning the lottery will solve all your problems! There was a time when I couldn't even feel hopeful with that ticket in my hand. When my problems seemed insurmountable (is that a word)? Yeah, my past and future health problems don't weigh as heavy on my mind anymore. I say this as I shed a layer for yet another hot flash! And I say this a day after I dreamed I got more bc. I guess my impending breast mri is weighing on my subconscious a little.

Seriously though, these past couple of months have been pretty stressful as we've finally taken a look at the toll this ordeal has taken on our finances. Most of that toll has been from me not working and from buying expensive mental health snowboarding tickets and new bikes to sweat away our worries. At the time I knew we couldn't afford it but I didn't care. I couldn't worry about anything but myself. That's why I know things are better now. I've been under a ton of stress yet don't feel depressed at all. I feel pretty happy in fact. Spent the last couple of days applying for jobs and feel pretty hopeful about that.

I've learned a lot about stress and coping over the last year and a half and I'm trying to put that knowledge to use. Got rid of a major drain on our resources by selling our beloved truck (the honda ridgeline). It was very useful in ny and ut and so much fun to drive in the snow and on the dirt but we don't need it here. It still had some value so we were able to trade it in, pay it off and pay for most of the next three years of a lease on a toyota prius. Yup, the nerd-mobile:) Actually, when you look at the gas savings, it's almost like we are getting paid to drive it each month! Just have had it for a few days so we'll keep you updated on how we like it. Sounds dead quiet though so I do worry about running over some pedestrians who will inevitably step off the curb without looking, just like they do when I'm biking down the street! I tell you it is a relief not having that truck payment anymore.

Some of my other stresses have come and gone in the last two weeks. I passed my certification test for being a nursing assistant! The test itself wasn't worrying me, rather the fact that I didn't have my cali driver's license was stressing me out. I was afraid they wouldn't let me sit for the test because I hadn't gotten my picture id in the mail in time, but it all worked out. And then a few days before my test, my left thumb started triggering badly. What that means is that my thumb was locking in an odd position whenever I tried to use it. If you've never had thumb problems, you may not realize how much humans depend on them. From tying shoes, to opening things, putting on contacts, pulling up your pants, etc. Needless to say, a thumb problem right before my skills test was not a good thing and my stress level was off the charts. But I managed to get in right away to a surgeon who did give me a cortisone shot to try and reduce inflamation and then went to dw's chiropractor the day before the test and managed to get through the day without a problem. Since then, I've been two more times to the chiro and my thumb is not only feeling better, it hasn't been locking up anymore. Too soon to say if it's been healed but I'm pretty hopeful that no surgery may be necessary. DW's chiro is actually out on injured reserve but his fill-in, dr p, uses the same graston and active release techniques that he uses. DW swears by it and now so do I. They not only do the normal adjustments, but work on getting rid of all the old, built up scar tissue we all have from the years of wear and tear on our bodies. I would have started going sooner if I knew that my insurance covered it. Wish I had been doing this once a week instead of the pt sessions I was paying for all summer. I think the results are much better.

Another big stress that will be off my mind in a couple of days is my new insurance! Not only will my insurance (through dw's work) be free, but my mri will be too. And my drugs are going to be substantially cheaper. I think my drugs are going to cost about $100 a year rather than $1000! Hell yeah! So even though we're going to be tightening our belts to pay off some bills, the future looks brighter.

One more stress factor we are getting rid of next month is our living situation. We will be subletting an apartment from a friend and it will be in oakland. So happy about moving back to the hood and being closer to our friends and the bay and having some room of our own. It's been a godsend to be staying with the in-laws for these last few months but the new place will be a little less crowded for all involved! And ready to finally settle back into cali. A place of our own will allow that to happen. Too bad we got rid of the truck before we moved all our crap;)

With all the stress hitting me I try and remember what helped me before. Music, long walks with the dog and dw, the gym, the bike, friends, family, patience, the garden, writing. I look forward to 2011, my new apartment, game nites with friends and family, a new job, classes and a step forward to my goals, new friends, old friends, less excess, new experiences, more fun. Happy New Year everyone!

christmas in cali

2010-12-05T20:45:00.000-08:00

It's a little different my second time around in cali. The first time I moved here it was at the beginning of the summer. By the time winter rolled around I was used to cali and didn't miss the snow too much. And I had come from minneapolis. A frozen tundra in the winter with very little decent skiing close by so I wasn't missing much. Now, after spending the last five winters in ny and utah, with an abundance of snowshoeing and snowboarding, we are experiencing a bit of loss here. The christmas lites on the houses are pretty but seem out of place among the palm trees and green lawns. We saw dozens of cars today sporting christmas trees on the roof racks. Just not the same when it is almost 70 degrees out!

We've been stressed out lately by various things and feeling a little homesick so decided to make some fun this weekend. We went and saw the movie 127 hours yesterday. It's the story about the guy that was doing some rockclimbing in canyonlands (utah) and got his arm stuck between a boulder and a rock wall and had to cut it off to save his life. We wanted to go see it so we could enjoy some utah scenery and it was full of beautiful shots of slickrock and slot canyons! Then today, instead of feeling sorry for ourselves that we have no snow and no money to drive to tahoe to enjoy that snow, we decided to take a drive to half moon bay and enjoy the ocean instead. We both love the water and are living inland right now instead of in oakland, so we don't get to see it everyday. It turned out to be a really nice day with just a little rain and pretty warm out. The leaves are still gorgeous here and some farms still have pumpkins laying in the fields. Doesn't feel like december yet here but I know all our friends and family in ny, mn and ut are saying something different!

15 years in the making

2010-11-22T17:32:00.001-08:00

15 years ago I seriously thought about entering the health care field as a physical therapist. I went as far as taking a couple of science classes and putting in 150 hours as a volunteer in a hospital and sports rehab clinic. I think I would have enjoyed being a pt but was discouraged by the thought of going back to school and nixed the idea. 3 or 4 years ago I started thinking once again about the health care field. This time I was considering pt or nutrition but again the thought of school slowed me down. I really don't like sitting in a classroom and I also don't want to be a broke student again so the thought of school doesn't make me happy at all. I didn't really nix the idea of pt or nutrition this time, I just didn't make any moves.

So here I am once again, thinking things over. I thought about social work for a ny minute. Mostly because mine helped me so much and partly because I wouldn't need so many prerequisites to get into that program. I often find myself thinking about new careers when I move to a new area and have to start looking for work, as is the case right now. And I have finally made a move towards that career in healthcare. A lot of factors have pushed me over that edge of indecision. For one thing, I found myself applying for the same job as I did years before. I have been working as an accounts payable clerk for the last 8-10 years and while I am great at it, I really can't go further into the accounting field unless I take more accounting classes. And while I love math and loved the hectic pace of ap life, I always felt that if I had to work holidays and crazy hours (to meet deadlines) then I wished it was for something more worthwhile like saving lives or something. More importantly, I found myself applying for jobs that I wasn't qualified for at all, such as patient care assistant at one of the hospitals. I actually called the hospital to see what I could do to try and get one of those jobs and I discovered that you can take a course to become a certified nursing assistant (cna). Yes, in as little as 5-8 weeks I could get enough training in and take a test and start working with patients/residents.

After much research and some soul searching and a leap of faith, I am now a week and a half into my cna program. I have already put in 25 hours in the classroom and 16 hours in at a skilled nursing facility and am loving it so far despite my inadequate bed bath skills today that left me sweating (and not from a hot flash). I have to admit that I was a bit nervous that I had to put in my clinical hours working with the elderly as I have posted before that I'm a bit afraid of them. I've never been around the elderly too much. None of my grandparents lived near us or lived too long. My one grandma did move in with us the last couple of years of her life but she could get around pretty well on her own. We didn't have to dress her or bathe her or feed her. We cooked for her but I bet she could have done that on her own. So anyway, 2 days in and I really enjoy my residents. Many of them don't speak much, if at all but I talk to them because I know they can understand me some of the time and sometimes I can get a smile out of them. I find my hours in the classroom pretty tolerable because it is practical and I'm learning so much.

Where do I go from here? Well, I will be looking for work once I get my certificate and will most likely end up at a skilled nursing facility. My days at the nursing home are filled with feeding, giving bed baths, changing and cleaning residents, using lifts to get them out of bed and transferred to a wheelchair and dealing with dementia and depression. And while that is going on I'd like to start taking a bunch of science classes I need before I can apply to get into nursing school. That could take me a couple of years which is why I wanted to go ahead with my cna program. I've had this burning need to start helping people and couldn't wait to get started. It's hard work especially for someone like me who likes to be good at something immediately. Giving a bed bath (quickly) and taking care of multiple residents (in a timely fashion) is going to take lots of practice. But it sure is rewarding.

making strides, san francisco style

2010-11-02T17:58:00.000-07:00

Giant trees, dancing lions, bison, ocean waves breaking and lots of pink men and women walking. Hmm...must be in san francisco golden gate park for the 2010 American Cancer Society Making Strides Against Breast Cancer event! DW and I were excited to be a part of the walk this year. After all, our good friend has worked for acs for years and works very hard on the northern california strides walks. I had the chance to volunteer last friday and help set up in the rain with my friend and dozens of acs workers, getting everything prepared for the walk on saturday. Banners were hung, tables decorated in pink and white, signs readied for placement along the route, thousands of tees folded in the gift shop tent, intermittent music played as the sound people worked on the stage area, port-o-potties stocked. A lot of time and effort go into these events pretty much year round. Marketing/advertising, logistics, coordination and the works. The payoff is the massive amount of money raised for research, programs and outreach. Over $574,000 has been raised so far from the bay area walks alone.

staying alive

Saturday came and went without the promised rain! DW and I joined 20,000 other walkers and enjoyed a 5 mile walk in a beautiful park setting, passing cheerleaders, the ocean, windmills and bison along the way. We got to the park just after the ceremonial kickoff so missed the rah-rah speeches but did get to see the lions (sorry don't know the name of the group performing) which are one of my favorite things! 20,000 is a ton of people but the venue is large and the start is rolling so for the claustrophobic, be unafraid. Also happy to report that traffic, parking and toilets were not a problem at all which is uncommon for an event this size. Since we missed the "official" start we took our time looking around at all the booths and also bought some t-shirts and other pink stuff. I think I am really getting used to this cancer and brca thing because I was not emotional at all, just out for a fun walk in the park, even as I wrote down names of loved ones and decided who I was walking for. Since this was a breast cancer specific walk, decided to just put my family's names down that had bc and since my sticker read "making strides for" decided to just put down the ones still alive, since it's too late to make strides for the dead. At this point, I realized that everyone who is still alive from cancer (except for one, non-blood aunt) survived breast cancer. I know bc still kills many people, but in my family it has actually killed none. I don't know if that is because of the type we get, or if it has been caught early or because almost everyone had a mastectomy, but we get lucky when it comes to the boob cancer! Here are the numbers of birthdays we have celebrated post treatment: wt 0 (pbm), me 1(lumpectomy), sis-in-law 5 (lumpectomy), dad 10 (mastectomy), aunt 35+ (double mastectomy). Those are impressive numbers also considering my grandfather survived 10 years and an aunt around 30 after their mastectomies before dying of other cancers. Well that's a lot of damn breast cancer, you must be thinking...I surely must have been fearful of my own risk! Well, no call me stupid but I just did not know. So you see there is still a great need for education about risks. And while this walk had some great signs around the course reminding people about the importance of mammos, etc I would love to see more info about hereditary cancer. This would be the perfect audience to preach to since many of us are there in honor of family members. Having been to events by komen, livestrong and acs, I wish this was a banner or sign for all to see:

If you or any family member has had:
ovarian or fallopian tube cancer at any age

breast cancer at age 50 or younger
breast cancer in both breasts at any age

both breast and ovarian cancer

male breast cancer
If more than one family member on the same side of the family has had any of these cancers:
breast cancer

ovarian or fallopian tube cancer

prostate cancer
pancreatic cancer
See a genetics expert or talk to your doctor

How the American Cancer Society can help you: they offer many services for those affected by cancer. In addition to the $130 million they spend each year on research for cures, they provide a website full of info on all kinds of cancers and their causes, treatments, risk factors, statistics, preventions and new findings. They also are available by phone, 1-800-227-2345, 24 hours a day to help you with any questions you might have or just to be there if you need a shoulder to cry on. They also offer many services for patients that need help during and after treatment, such as offering rides to treatments, help with lodging if you have to travel for treatment and a variety of support groups. I mostly use their website to look up specific cancers that run in my family and figure out what the symptoms are and risk factors and any screening that can be done.

Oddly enough, acs was actually the one to tell me I had cancer. When I had my biopsy, the radiologist called me and told me that they found dcis and I would need to see a breast surgeon to have it removed. When I saw the breast surgeon, she also referred to it as dcis. So after my two surgeries to remove the dcis, I had been on the computer trying to learn more and I was just confused. DCIS is often referred to as a pre-cancer. At this point I was not sure if I had cancer and was a little embarrassed to ask my doc if I did or not. So this is the question I emailed acs with: I recently underwent a lumpectomy for stage 0 noninvasive DCIS. I know they call this a pre-cancer. Does that mean I did not have cancer? Everyone thinks I had breast cancer and I don't really know what to call it. And this was their answer: Regarding your question, ductal carcinoma in situ (DCIS) is a type of non-invasive breast cancer. DCIS mean that the cancer cells are inside the ducts but have not spread through the walls of the ducts into the surrounding breast tissue. So almost a month and a half after I was given my diagnosis, I actually knew what the hell it was. My next stupid question is "so am I cured?" None of my doctors ever mention remission but I think that doesn't apply to me because my cancer was noninvasive. I like to tell people that I used to have cancer. Let's hope my brca mutation doesn't fuck that up.

the value of a second opinion

2010-10-20T13:13:00.000-07:00

I hate to put it out here because I know most of my readers can relate to what this poor woman must be going through. It breaks my heart and makes me just sick. I heard a true story of a woman that went in for a breast biopsy and was given a diagnosis of cancer. Not sure what the exact diagnosis was, or if she was brca+, but it must have been serious since she elected to have a bilateral mastectomy. Now when they remove your breast tissue, it gets sliced and diced and every little piece gets looked at for cancer. This is when they realized a mistake was made. Because they did not find ANY cancer in her tissue in either breast. Turns out they put her name on the wrong tissue sample at the time of her biopsy. I'm not sure a second opinion would have even helped her because normally that would have just been a case of sending that same mislabeled tissue to another pathologist. One can only hope that the other woman whose tissue was also mislabeled has been found and that the whole lab is getting a shake down to fix the broken processes. I am not a litigious person but this just cries out sue, sue, sue. Really though, can any amount of money give this woman back what she lost? Maybe she is more forgiving than I and is simply happy that she did not have cancer.

I did not seek any second opinion on my biopsy results nor did I meet with more than one breast surgeon before my lumpectomy. Everything turned out ok in my case. I can understand why people don't seek multiple opinions. For one thing, when this is all new to you it is overwhelming and you tend to trust what they are telling you. Maybe you never heard of a radiologist or pathologist before and surely they have much more cancer experience than you do so you just go with what they say. It is also expensive to shop around for docs even if everything is covered by insurance, you still have to pay that office visit copay. Sometimes you can't even get a second opinion as is the case with testing for the brca mutation. Currently one company holds the patent on brca gene testing. This is troubling for people who want to double check the test results before making such tough decisions as removing body parts. As someone who did have breast cancer and such a history of it in my family, I would have been more surprised if my test came back negative and probably would have wanted to send my blood to another lab just to make sure. And while I am more than happy to believe that my little sisters' tests did come back negative I still can't figure out how the lab processed their blood so quickly. I think they found out two days after the blood was drawn and sent from ny to ut. Is that even enough time to get the package off the truck and into the lab, let alone run the test and call their genetic counselor? Don't forget they usually call your insurance company first to make sure they will pick up the $3000 tab before they even start running the test. All this was accomplished during the week of christmas which is a barely functional week at most u.s. companies!

One second opinion I did get ended up saving my butt. With my family history in hand, I went to my primary doc and asked her what else I should be doing to keep myself healthy and we determined that I should get a colonoscopy. Despite the fact that all the guidelines said I didn't need one until I was 50, we added up all the questionable risks (diabetes, brca, half-uncle with colon cancer) and decided to get me to a gi doctor who pulled a precancerous polyp out of me. Whew is all I can say!

it's boob awareness month

2010-10-08T10:39:00.002-07:00

Turned on a football game over the weekend and had to smile at all the nfl guys wearing pink for breast cancer awareness. It's october already which means that it is boob awareness month. I like math so of course I started crunching some numbers in my head. If the meadowlands, which holds 82,500 fans, were filled with average-risk women then about 10,300 of those women will get breast cancer in their lives (and 1,237 will get ovarian cancer). Let's say it were filled with brca+ women, then 41,250 to 70,125 women in the stands will end up with breast cancer (and 8,250 to 41,250 with ovarian cancer).

I think I feel a little more comfortable this october seeing all the breast cancer stuff out there. Maybe because it seems like we are making strides this year. Many new findings have come out recently that give me hope that things are getting better and we are coming closer to understanding the mutations. The more we understand about how a mutation works, the closer we get to finding a way to stop it. Recently they have been able to isolate the brca2 protein and they may have found a way to repair the brca1 mutation.

What do you think of when you see all the pink breast cancer stuff in the stores? Before I was diagnosed with bc I would see the pink stuff and think of my sis-in-law, the one who survived breast cancer. I would think about getting her something pink and cute because after all, don't all bc survivors need another pink thing to make them feel good or special? In fact, when I bought a new mattress one year (must have been in october) I received a pink sheep which I did send to her! I feel a little stupid now:) Yes, it is good that breast cancer is getting so much attention and some of that pink money must (I hope) trickle down to cancer research or cancer programs but I think we are forgetting the big picture. BOOB AWARENESS! I'm obviously aware of my boobs, are you? I mean, are you aware of your boobs?! I talk about mine all the time and now even think about them in the most random situations. I had to stop at the nevada/cali border for an agriculture check point on my drive here and open up my trailer. The guy told me to only open it a couple of inches otherwise I wouldn't be able to shut it again. He peeked under a one inch opening and said I could go even though he couldn't really see into the trailer. Same thing happened to dw on her drive here. My first thought was why do they bother making us open it a little and pretend they can see in? It's like having a mammogram but not having anyone read the film. Then I got to cali and we pulled our king mattress out of storage. I wanted to vacuum it but it is so large I didn't really know how to tackle the job until it dawned on me to break it down into quadrants as if I was performing a self breast exam. Do any of you (non-brca+) even do self-breast exams? Do any of you go and get your mammo every year? Do you all know what your family history is? When you see the pink stuff this year, please reach for your boobs and cop a feel (but try not to get arrested). And no, you don't need to send me any pink stuff unless it's really, really cool!

I left my heart (and part of my boob) in salt lake city

2010-10-05T14:46:00.000-07:00

It's official. I've left utah behind and am now residing in california. I've rejoined my wife after 6 ~~months~~ weeks apart and while it is so good to see her again I'm going through an adjustment period. It's to be expected and I just need to roll with it. Living with the in-laws until I can find a job and we can afford our own place. Our pets and their pets learning to get along under the same roof. Trading mountain views for views of palm trees. I haven't even seen the bay yet as we are out in the burbs (I'm going to have to do something about that this weekend)!

It's funny how much difference a year can make. I know I say that all the time but it's so true. Last october I put a poll up on this blog asking you all to vote on where we should move next. I was so ready to leave utah. Now we have moved but I will miss it dearly. Two years ago as we left ny and headed to utah, I was so excited. So much beauty and so many places to explore in utah, not to mention the snowboarding! And we had an awesome first 8 months before cancer and brca entered our lives. The rest of that story is written here in the many pages of this blog. Somewhere between last october and this october I changed my mind about leaving. Somehow between my bcsw, snowboarding and working in the gardens I was healed. I got broken in utah but I got fixed there too.

So I'm back in cali and I expect to hear the typical utahn jokes when people find out I lived there. You know the dumb ones about how many wives I have, etc. And I expect to hear a little hatred because of prop 8 and current talk by some church leaders. When I hear people saying bad stuff about mutant 2 the kid in me wants to strike back or curl up in pain but the adult in me tries to remember what I've learned over the years: that is that you shouldn't judge the individuals of a group by what its leaders say. I mean, I grew up catholic and my pope doesn't like me but I know for a fact that many catholics do not believe in everything the pope dictates. And I assume that the same goes for the lds. I've had the pleasure of making the acquaintance of several lds and I like them and I hope they like me too. We don't have to agree on everything and believe in all the same things to get along. A little respect goes a long way and I just wish Packer had worded his speech a little kinder. If you've never been to utah, please don't be afraid to go there. It's a beautiful place and the people are pretty nice.

It's National Previvor Day

2010-09-29T16:31:00.007-07:00

Today is the first ever National Previvor Day. National what? You're probably wondering what the hell a previvor is, aren't you? Sounds like some kind of made up word. Well it is and I've blogged about it before, here. In a nutshell, a previvor is someone who has a predisposition to a disease such as cancer but has not gotten it. Steph describes previvorship well in her blog, here. I read a lot of blogs and they are all great and all written a little different and I appreciate all of their perspectives. One of my favorite posts, and one of the first that I read is one where Steph describes what it feels like at the plastic surgeon's office. It really hit home and I have it taped inside my journal. It shows one aspect of being a previvor: the anger and frustration we have with our options on how to beat cancer to the punch.

I consider myself a survivor and a previvor. What does previvor mean to me? It means that just because I had a little bit of breast cancer doesn't mean it's over for me yet. I've had two relatives survive bc only to die from a different cancer. It means that not only am I at risk of a whole host of cancers but so is my family. Only 4 of us have tested so far and thank god my little sisters are ok. That means all my nieces and my nephew are in the clear. And I thank god my twin has already undergone pbm and bso although I have not returned the favor to her! Being a previvor means you worry a lot about your family and yourself. And it usually means that we have lost family members to the fight, many whom never even knew about this mutation. Knowing you are a previvor means that you can take action. Surgery, drugs, tests, prayer, crossing your fingers, a little bit of luck...that is what it takes to previve.

They just created National Hereditary Breast and Ovarian Week and National Previvor Day a couple of weeks ago. We need to create awareness about hereditary cancer. Although the brca mutations were discovered about 15 years ago you'd be surprised at how many doctors and medical facilities are clueless about them. My twin's pcp didn't know anything about it and had to consult with her myriad rep and read the fact sheet. That's reassuring! My little sister was told at her giant breast care center that she need not bother getting a mammo every year because the breast cancer was on my father's side of the family. That's ignorant! I knew of my father's breast cancer for the past ten years and never heard that it could mean bad things for me. That was potentially deadly! So while you all might be so sick of the breast cancer commercials that flood the month of october, I hope that the hboc commercials will start as well. Maybe the message will get through to our health care providers and to some poor soul who knows their family history is fucked up but doesn't know why.

What am I going to do in honor of this week? I need to finish telling my family that we have a brca2 problem. Yeah, I'm ashamed to admit that there is still one aunt out there that I never told. I don't know her and I don't even know how many kids she has. I didn't know my uncle. He died pretty young from stomach cancer. Who knows if he carried the gene but my guess is yes. I told most of my family last fall that I tested positive. It was a really difficult thing to do. I felt like this bad news was all my fault and that I would be ruining their lives. From my aunts and uncles I received sympathy for my breast cancer but no mention or questions of the mutation. I worried that they had not passed on the word to their children and I was right. From some cousins I talked to I found out that they all knew our family history and all worried about breast cancer and had been getting mammos. I felt a little let down. I didn't know my grandpa and two aunts had also had breast cancer. I hadn't been getting mammos and neither had my twin. I also felt discouraged because I don't think, a year later, that anyone outside of my sisters has tested for this. And that's up to them but I also don't think they have told their kids about it and if that is the case, that's not okay with me. My cousins are all older than me and their kids are all hitting their twentys. So yeah, pour on the commercials, make some giant billboards and spread the fucking word.

Thank you Sue Friedman from FORCE and everyone else who pushed to make this happen.

don't blow up...

2010-09-27T18:04:00.001-07:00

warning: this is a vent post. f-bombs will be dropped.

Don't blow up, don't blow up, don't blow up (my mantra while on the phone with insurance company). Don't cry, don't cry, don't cry (my mantra after hanging up with insurance et al, companies). Unfortunately I don't work on mondays so that is the day I get to deal with any medical crap I've been putting off. Believe it or not I'm still dealing with misc medical bills from my last surgery in february. I had to have some additional path work done in april because of some strange healing my body was doing. I don't even remember the name of the cells they scrapped out of me at my doc's office. I had put that all behind me. The office visit was covered as part of my surgery costs. But my doc sent the path to the hospital (because it is right there and quicker) instead of a private lab, thus my insurance company wants to stick me with the bill as part of my deductible. I say a lab is a lab is a lab so why should I pay for it? The hospital says the same thing so I'll be going for round three of phone calls after already talking to insurance, doc's office and hospital a couple of times. At the very least, if I don't win my hospital said they would knock 25% off the bill. So one lesson learned right there: find out from your insurance company which labs they will allow you to use and then make sure your doctor's office only sends your shit to those labs. Yeah, I know most of us assume that once we find a doctor that is in-network that our work is done but it ain't. We must ask about every procedure and every lab and every other thing that might get billed. Did you know that if you're having surgery that you'd better make sure that everyone involved is in-network? Including the anesthesiologist and the radiologists and the pathologists. It's a little hard to do sometimes because we don't even know all the details and who is even involved outside of the doc we searched so hard to find.

They tell you not to have regrets after we make our decisions because we do the best we can at the time. We don't have the luxury of hindsight. But I do have regrets. I wish I had kept my original insurance plan. I used to have in-network only insurance with no deductible that covered 100% of my bills. I only was responsible for co-pays. It was beautiful and stress free. I paid $50 for each lumpectomy and my breast mri. That was it! I wouldn't be worried or responsible for this dumb lab bill right now. I would have saved $1800 on my hysterectomy. But no, I was all hell bent on going to an out-of-network plastic surgeon so I switched coverage. I'm not sure what I was thinking cuz I didn't have the money for that surgery let alone money to travel and stay out of town for the ten days it would require. And I got stuck with a huge bill for seeing that out-of-network surgeon. $450 for a one hour consult. Yeah, I ended up only having to pay for half of it but I would rather have used that money for snowboarding or groceries. Oh well, at least I saved $900 by skipping my radiation treatments. If I could do things over I think I would have paid $100 to have my diep and mastectomies here in town and be done with this whole mess. Talked to my insurance company to make sure my upcoming breast mri is covered and find out that I will be responsible for a deductible for that. Possibly $350 but I'm not sure. It's all a little confusing to me. So while I had the best intentions to get that done soon, I think I will have to wait til january because I am not spending that kind of dough on a deductible this late in the year since it all starts over from scratch again in january. Again: wish I had kept my old coverage!!!

I am tired of this fight. Oh yeah, happy fucking Hereditary Breast and Ovarian Cancer (HBOC) week.

book review: Meet Virginia: Biography of a Breast

2010-09-22T23:02:00.001-07:00

If you are like me, you prefer to be knocked out for your surgeries yet you wonder what the heck went on while you were sleeping. If you are like my wondertwin, you wish you were awake and able to keep an eye on everything going on and maybe even give directions to the surgeons. You can find some surgery video online but sometimes that is a little too much detail. I remember looking at video of a hysterectomy while I was still recovering from mine and deciding that it was just too painful to watch as they inserted instruments and had blood squirting everywhere. Perhaps that isn't the best thing to see immediately before or after surgery! Most of us are scared enough as it is.

What if you could look at some still photographs, a little less gory than video, that show you what goes on in the operating room? I was very curious indeed when I heard of a new book that follows a woman, photographer and all, into surgery as she undertakes a mastectomy with immediate reconstruction. Meet Virginia: Biography of a Breast by Jay Agarwal, MD (reconstructive surgeon), Ravinder Ahluwalia (medical student), Leigh Neumayer, MD MS (mastectomy surgeon) and Anne Vinsel (photographer) sheds some light on the mastectomy and reconstructive process.

The book facts: I was going to try and impress my librarian dw by listing the isbn number and all the publishing details but this book appears to be self-published. So here's what I found, 176 page, hard cover (coffee table book size) published in 2010 and selling for $39.95 USD. It can be purchased on the website meetvirginiabook.com. I wish I had thought to count how many pictures there are, but I didn't and I don't have a copy of the book to do so now. I can tell you that the majority of the book is photographs with brief descriptions provided by either Dr Agarwal, Dr Neumayer or the patient.

The patient facts: While the name of the patient is given in the book, I'm not sure she wants her name all over the web, so I'm leaving it out for her privacy. I'll refer to her as dp (dear patient). I'd like to thank her for being brave enough and generous enough to share her journey with us. DP was diagnosed with cancer in her left breast and undergoes two surgeries. No radiation or chemotherapy were needed. The first surgery is a total skin sparing mastectomy (kept the nipple) on her left breast with expander reconstruction. In this surgery she also has a previous implant removed from the mastectomy side and undergoes sentinel node biopsy. The second surgery consists of the removal of previous implant on the non-mastectomy side and replacement with a new implant, and exchange of expander with a silicone implant on the mastectomy side.

Author notes: This book is meant for breast cancer patients, families and friends in the hope that it will make it easier to understand what happens during breast surgery. It is meant to be used by the patient in conjunction with her doctor. Photos were taken during the actual surgery as well as before and after.

The rest: I first heard about this book from my local FORCE monthly newsletter. Just so happens that it was written by some doctors at the big cancer house I frequent (although none of my doctors reside there). I admit that I do like the big cancer house and like all the free counseling they give me and they have helped me out a lot but this is an unbiased and unsolicited review.

I don't have $40 to shell out for a book and it wasn't in the cancer library holdings yet so I contacted Karen, my local FORCE coordinator and she was kind enough to loan me her copy. Did I mention that this book is a nice coffee table size? Sure would make a conversation piece if you do decide to display it as such! As we are standing in the middle of the library, Karen pulls out her book and bam, there is the naked bust of dp for all to see. I am pretty used to naked boobs by now but not used to seeing them on a book cover and out in public like that! There is an alternate book jacket if you flip it over. This one is of dp in surgery with 3 people in scrubs working on her. This photo just exposes her left breast a little bit.

The book does have an intro about different types of breast cancer and goes into a little detail about how to make a decision on which type of mastectomy is best for your cancer but the info provided is really just a starting point. There are some good books out there that go into greater detail about your surgery options; see the left side of my page for a few resources. Now for the heart of the book and what we've all been waiting for - surgery photos. We see pics of dp at all stages from pre-surgery to the final outcome after the exchange is made and healing is underway. Some of the instruments used during surgery are shown and explained including the geiger counter, skin hooks, electrocautery wand and retractor. Detailed photos show the many steps in dissecting the breast tissue from the muscle and skin until it can be pulled out from the skin envelope. (Not as gross as it sounds, kind of cool in fact). We see the process of the human cadaver skin being used to create a pocket for the expander and eventual implant. Photos capture how the expander gets stuffed through the small incision into the pocket. The magical part is how small the incision is in comparison to our whole breast and how they are able to get everything done in this small gap in our breast. Sometimes you will see at least 6 hands dancing above the breast all doing something different yet working together. Some of the photos stand out in my mind such as when the old implants are squeezed out of the incisions but one I won't soon forget is when Dr N is checking the skin to make sure she got out all the tissue. You'll know which one I'm talking about when you see it!

I know I talk about the "slice and gut" and "cutting the bitches off" in my blog because that is how it feels in my heart. But when you see these photos you will be amazed that it isn't like that at all. Even as dp is on the operating table with no implant or breast tissue left, she does not look deformed. Smaller, temporarily, but still whole and still beautiful.

This book is about one woman, one type of mastectomy and one type of reconstruction. It does not delve into the possible complications of surgery or the loss of sensation or recovery times. There are so many options out there, just for incisions alone so do your research. Read some reconstruction books, read the message boards and talk to as many surgeons as it takes to find the one right for you.

Wrap up: My faithful readers all know by now that I don't like surgery and am kind of afraid of it. That said, I did not find this book scary. If you are especially squeamish, you might not like the first part where they are removing the breast tissue. I thought this was a great book and wish they had one for each type of reconstruction. I didn't understand everything they were explaining but it would be a great book to read and then take to your doctor for further explanation. It might help people who don't know what questions to ask. I would love to see this book in every surgeon's office.

moab century ride report:hot diggity damn!

2010-09-20T17:00:00.003-07:00

I completed the moab century on saturday. This was a bike ride to raise money for livestrong, the moab cancer center or a cancer program of your choice. With apologies to dw who couldn't make it because she is in california, I have to say that it was an amazing day! The weather was perfect (a little warm towards the end but that's why an extra water bottle comes in handy to douse yourself). The course was ridiculously beautiful. I did the rolling 68 mile route along the colorado river on highway 128. I chose the 68 mile course in part because the 100 mile course has a "hill" called the big nasty and has an elevation change of 3000 feet within a 7 mile span. Just didn't sound like it would be fun, but who knows, if I actually train for it maybe I'll be up for the challenge next time. I had a blast tucking and coasting down the big hills and resting my legs before having to work a bit to get up the next hill. Red rock surrounded us the whole way and we were treated with visions of pinnacles and the mighty colorado river. Many of the riders were with Team in Training from states all across the country. TNT is an organization that helps you train for different athletic events and in turn you help raise money for The Leukemia and Lymphoma Society. You don't need to have cancer or even know anyone with cancer to be involved with their group.

Before the event we had the chance to write names of our loved ones on a board. People we were riding in memory of who lost their fight to cancer and people we were riding in celebration of who have survived the fight. I rode in memory of my mom, both my grandfathers, an aunt, 2 uncles and a cousin. I rode in celebration of my dad, 2 aunts, my sister-in-law, my previvor wondertwin and myself. I also rode for all my loved ones - my support staff, if you will. What do you call your wife/husband/partner that helps you through all this? What about the rest of your family who have to watch all the suffering, take care of you when you are sick and pick up the pieces and try and carry on when you are gone? When my mom got cancer I remember being strong and believing that she was going to make it even though they said no lasted more than 2 years with her cancer in that advanced stage. If anyone could fight it, my mom could. But she didn't. And when my dad told us less than 2 years after her death that he had cancer, I remember my sisters and I all got hysterical. One of my brothers tried to soothe us and he got screamed at. My poor dad did not find any strength from us! And when I told my little sister that I was coming home to visit 2 weeks after my lumpectomy she was suspicious. She asked me was I really just coming home for a visit or was I coming home to tell them that I was dying? Cancer takes its toll on everyone. I think I would have called the "survivors and previvors" fighters since really we are always on the lookout for what might happen next and I would call our families and loved ones the survivors.

If you are ever in moab I highly recommend driving (if not biking) along route 128, a designated scenic byway. It is well worth the time. There is no shoulder on the road so be careful if you are biking on your own and not part of an event. The road is very twisty and even though the speed limit is only 45mph you will be dealing with tourists enjoying the view instead of paying attention to the road or locals driving way too fast. You can also raft down the river and get the same great views, if not better. There is a raft trip in june that is a fundraiser for susan g. komen, if you have the opportunity, go! I've been to moab countless times and this was my first time on this beautiful road. I can tell you that it will always be a part of my itinerary on future trips and in fact I drove home that way today even though it is a little bit out of the way.

What a difference a year makes! The leaves are starting to turn here which made me think of a favorite hike of mine, stewart falls. DW and I hiked it last fall and we were in a much different place then. At the time, we were very sad and just going out and doing things to try and find a minute of happiness. Now I find myself pretty damn happy with just some stress on the side. I have to laugh when I look back at last year's post and read that I had just decided to go ahead and cut my boobs off! I guess I change my mind a lot. I've been thinking of this whole idea of happiness lately because of some recent deaths of family members of people in my bike club. One lost their mom and another just lost their son in the war. And it is also almost one year since my friends lost their little boy and they are still suffering deeply. I don't want to compare what I've been going through with the loss of a loved one. That hurts on so many levels. I've been there. I lost my mom. I just want to say that whether you are grieving from the loss of someone close to you or grieving changes in your life or some other difficulty, don't give up hope. Things will get better. Your open wound will start to heal and scab over. One day that scab will fall off and maybe leave a scar. Some days that scar might be itchy or burning and irritated but most days it will be ok.

Been trying to figure out how to attach my pictures to my blog now that I gave up my data plan on my phone to save a little money. I used to just text them to my email but that will cost me now so going to try and text them to someone who has a data plan and have her email them to me. Annoying but I have some nice pics from the bike ride. I don't miss having internet access on my phone except for that one feature!{note: bought a microsd card for under $10, problem solved}

This is post number 100! Who'd have thunk I had that much to say? Tune in for my next post where I will review an exciting new book about breast surgery and what goes on in the OR while we sleep.

my drug addiction

2010-09-14T23:32:00.000-07:00

As you can see by the picture, I have a drug problem. I shoot up at least 3 times a day, sometimes more, ideally 4 but I try and skate by without my lunch shot. I poke my fingers at least 4 times a day, ideally more but heck, I get so sore and it's such a bore. Damn, I'm in a happy mood today! So where's this story going? I went to see a nutritionist yesterday. Not my regular one, whom I love, but the free one at the big cancer house. Yes, my insurance covers a nutritionist but I have to pay a $30 copay and I see so many docs it really starts to add up so I love to take advantage of free stuff. And besides, this one specializes in cancer crap. My main goal was to find a way to replace some of my supplements with real food. I'm taking a daily multi-vitamin, fish oil, glucosamine and calcium with vitamin d along with my insulins, thyroid med and pills to protect me from heart/kidney/artery disease that can be complications of diabetes. Have I mentioned that I hate medicine? When I was younger I couldn't even swallow aspirin and now I take pills that could choke a horse. Back when I took just 2 tiny pills I tried taking a multi-vitamin but stopped because mentally I felt I was overmedicated. I take 9 pills now and it just blows my mind. Physically, I feel great and can't tell I am on anything but I still have a hard time taking all this shit. I think I was a christian scientist in my last life or hoping to be one in my next life I guess.

My appointment didn't go exactly the way I planned. Turns out that the nutritionist likes all the supplements I'm on. The fish oil (omega-3 fatty acids) is thought to be good for your heart and brain and may reduce the risk of some cancers including breast cancer. It's not that easy to get my daily dose (1000mg) in through diet and it's thought that the body actually uses it better through the pill form anyway. I take 1200mg of calcium with vitamin d added in. That is the recommended daily allowance for me in my new post-menopause state for bone health. I have to take this in two doses because the body can only absorb about 600mg at a time. Looks like I might be able to get about half my needs in by diet and drop it down to one pill. I'm not sure I can cram enough calcium in my diet to do away with both pills but I can go day by day and substitute a pill as needed if I'm not eating enough. The nutritionist flat out said that she recommends all adults to take a multi-vitamin for general health since it is hard to eat a diet so well-balanced as to get all the weird stuff like magnesium and manganese, etc. She did say to beware of some of the brands which offer up 300% of your daily needs. 100% is just fine. That leaves the glucosamine for joint health. She said there are no studies proving its effectiveness but some people swear by it. I've been taking this on and off for several years because of the beating my body has taken from various sports. I personally can't tell if it works for me. DW swears it helps her feel better but she thinks that joint juice (liquid form) works better than a pill. I started taking it again when I started working at the garden because I ache now and might as well give it a shot. Once I stop working so hard and my body feels better I'm probably going to stop taking it again since it's the only thing I can really cross off of my drug list.

In conclusion, my nutritionist said she really thinks I should continue to take the multi-vitamin and the fish oil and that I really should try and get 1200mg of calcium in my diet, which means I will probably need to take at least one 600mg pill. But she says it is good to try and eat a large variety of vegetables and fruits anyway not only because of the low fat/calorie benefits but because of all the phytochemicals that help support overall health and offer some cancer protection. She also showed me a pretty cool website that helps you track the nutritional value of what you eat each day if you fill out a daily log. Say for example you ate cheerios, a banana and milk for breakfast. You click on your serving size and it figures out what percentage of your daily recommended vitamins/nutrients you had as well as calories, fat, etc. I'm going to fill it out for a week or so and then email it (there is a feature that allows you to email your data to other people) to my nutritionist so she can give me some advice on how to work on any deficiencies. It is called NutritionData and it is free.

no shit, sherlock

2010-09-08T21:11:00.000-07:00

You'd think because I haven't posted in so long that I've had nothing to say. That's not the case. I've had so much running through my mind I just don't know where to begin and at the same time, I can't get the words to flow out of my head and onto the screen. Finally getting back to my journal which is great but my hands are still hurting so writing is hard. I find it easier to type, although I end up paying for that later. I guess it is good I will be moving on from my wonderful gardening job soon as my body is falling to pieces on me. I'm hoping that my aches and pains in my knees and other joints are attributed to my job rather than the lack of estrogen starting to catch up on me. I was feeling pretty good prior to the garden (with the exception of some hand problems from my bike).

So lets talk about the recent brca study that came out in the journal of the american medical association. It states that preventative surgery (mastectomy and salpingo-oophorectomy) increases survival rates in brca1/2 mutants. This study has caused quite a stir with the media with a lot of tv shows and papers running stories.
ap
cnn
npr
abc
cbs
fox
jama video

For those of us in the mutant/high risk population, the study results aren't much of a surprise. It's kind of like when ellen came out as a lesbian. No shit, sherlock! I think most of us already knew that getting rid of our boobs and ovaries decreased our chance of getting cancer and increased our chance of dying of something else. Otherwise what's the point of cutting them off? The interesting thing about this study is that they looked at brca1 and brca2 separately so that now mutants have a better understanding of how surgery may affect their cancer risk based on which gene mutation they have. For those of you who don't know, brca1 and 2 gene mutations are very similar yet they do have some big differences including the percentage of risk of breast and ovarian cancer as well as the type of breast cancer you may usually get.

This study also looked at how removing your ovaries can have an added benefit of reducing your risk of getting breast cancer. This is something that they have known about but now we have some breakdowns on which mutants it helps the most. Since I never did end up cutting off my boobs, I was banking on the fact that getting rid of my ovaries reduced my risk of bc recurrence or new bc. According to the study, removing the ovaries reduces bc risk in mutants who have not had bc yet but doesn't have much added benefit to those who have already had bc. I was very upset to learn this but after reading the study a little closer and learning its limitations, this might not really be the case. The study looked at women who have had bc but did not look at what kind of treatment they had for their cancer. So some of the women could have had chemo (which often results in menopause) or tamoxifen (an estrogen blocker). Both of the treatments can result in the same benefits that removing the ovaries do. So still crossing my fingers that I have bettered my odds of not getting any more breast cancer.

Ugh, my posts feel really disjointed lately. My mind feels like it is going to explode. This surveillance thing is not easy. Although I do not feel worried (yet) about my upcoming mri, I am constantly thinking about my breasts and what to do. Being on the surveillance route feels to me like a temporary thing rather than a permanent thing. Like a person that does not have health insurance taking a gamble on how long they can go without it before it comes back to haunt them. I may have decided not to have surgery for now but I am constantly looking at reconstruction options and surgeons, etc. I'm not the only one in this boat. If you take a look at that study again, you will see that the majority of us are not going through with surgery, even though it shows it saves lives. Why is that? It's not an easy thing to do. We like our body parts and we fear the surgery, the pain, the recovery, the loss, the costs.

a good test of my endurance

2010-08-11T21:06:00.000-07:00

Saw my breast doc today. I have been avoiding her for a few months since I needed a little doc hiatus after my last surgery. My boob has changed a lot since I saw her in january. I still have some hard spots in it and some bruising but happily some of the hardness has gone away, especially under the nipple. I confess I haven't been feeling myself up lately, partly because my hands hurt and partly because I no longer have surgery on the table so I am not panicked that I will never feel them again. So as she is examining my bad boob, I can tell she is lingering longer than usual. I feel like saying, "step away from the boob and stop worrying." She tells me she feels something in there that she doesn't remember feeling before. I wonder how she remembers what my boob feels like. Does she take really detailed notes or is my fabulous boob engraved in her mind? She goes on to say that it could just be that the tissue around that spot may have softened but that spot stayed hard. Or it could be fibrous tissue. It doesn't feel gritty, the skin isn't stuck and it doesn't appear to be rooted. All good signs. Of course, because of brca, she says we have to check out anything unusual. She says that it worries her a little but not a lot because I am due for my mri next month and we can wait until then. Unless I would like to do an ultrasound this month (which isn't as sensitive a test). I just laugh and say that I had hoped to put off my mri for 6 months and get on the rotating mammo/mri schedule instead of doing them so close together. She wants me to promise her that I'll go and get one this fall. I don't say anything but think to myself, I'm moving at the end of September and then I'll need to find a doc and get a referral and then schedule the mri which could in itself take a couple of months. No way that is going to happen right away. We are moving back to cali. DW will go this weekend and I will follow later. I will probably be off my cobra insurance come september and on new insurance but I won't be able to use that insurance here in utah so any treatment or tests will have to wait until I move. Doc goes on to say that she worries about me. I say, "don't worry about me." I think to myself don't worry about me, I have lived a wonderful life. I never thought I would live this long so I did my bucket list in my 20's and when I kept on living after my 30th birthday my bucket kept flowing. Besides, no one in my family has ever died from breast cancer. We must get the good kind. She says I know you will be ok and the survival rate is the same without surgery. She mentions an ultrasound again but I say no because I figure that will come back inconclusive like wt's did and then they will want to biopsy me. Forget that, I will wait for the mri which doc says does a much better job. I say if something is wrong then why did I just pass my mammo? She says the mammo can miss about 10% of cancers especially in dense breasts like mine. I don't feel worried though because a mammo caught mine in the first place. We say goodbye and I thank her for all her help over this last year. She tells me that I can always call her from cali with any questions. I love her and I'm going to miss her.

So I am on the surveillance track right now. I have decided not to cut the bitches off, at least for now. I have been known to change my mind! This spot I have to pay attention to will be a good test of how well I can handle the strain of surveillance. It will be interesting to see how I will feel if I do end up needing a biopsy. What will actually push me over the edge and onto the table? It reminds me of some baby swallow we have been watching at the garden. Yesterday, they finally took the plunge out of the nest. One little lonely bird sat at the edge of the nest all day by itself because I guess it was too afraid to take it's first flight. Finally, when someone took a picture of it, it flew off. Perhaps scared more by the camera than by the thought of falling out of the sky.

I'm feeling stubborn today and got home and was like no way I'm gonna go get that mri soon. But then mutant 1 reminded me that I'm gonna need new drugs pretty soon after I get to cali. And I'll need to get a doc to sign off on my new driver's license most likely. So guess I will see if my old doc there will take me back. Once my new insurance kicks in I guess I will call from utah and set up an appt and maybe see if I can get a referral via phone so I can make the mri appt in advance as well. Mutant 1 saves the day once again.

a view to die for

2010-08-04T19:50:00.003-07:00

Angel's Landing:we made it over but now we have to cross back

July 31, 2010 did not go the way we had planned. We were supposed to be backpacking in the narrows at zion national park but the weather was calling for a chance of heavy rain and high risk of flash floods. We all agreed that we did not feel comfortable risking our lives in a narrow canyon with walls up to 1000 feet on either side of us. We actually made that decision the night before when the risk was only moderate with a substantial potential of flash floods. We were all a little disappointed because we were really looking forward to it but we knew the weather is tricky at this time of the year. In any case, anything is better than what I did a year ago on the 31st: my lumpectomy reexcision that had me crying on the operating table because they couldn't get the i.v. in me to put me to sleep fast enough.

view of the ridge from scout's landing

dw crosses the ridge

So instead we decided to hike angels landing. This is a hike that I have never wanted to do. In fact, I have stated repeatedly that I would never do this hike. It involves hiking up a steep, mostly paved path until you reach a gnarly, rocky section with chains to assist you along a very narrow path about 1000 feet up from the valley floor. DW insisted that she wanted to do this hike if we were not able to do the narrows. I insisted that she would be doing it without me and that I did not even want to be around to watch her do it because it scared the shit out of me to even think about it. But I knew she had her heart set on it so I looked up some footage on youtube. I found a video of a guy that was wheelchair bound and was just getting well enough to get out on the trails again and did this hike with the help of his family and friends. I was so impressed with his bravery and determination that I decided that I could at least hike up to scout's landing (the part before the really scary part) and turn around if I didn't want to finish it. Once I got up there and looked across the ridge I thought it was crazy to continue. But once you are on the path and don't look down or ahead, and just concentrate on the ground beneath your feet and the chains or rocks in your hands, it was a little less intimidating. Of course that takes some of the joy out of hiking for me, if you can't really appreciate the view because it scares the shit out of you! There was an aussie behind us that was talking with us and trying to convince himself to go to the top. He asked my brother (who had made 2 previous summits) if it was worth it. My brother just said ummm... so the aussie was like well, you just talked me out of it! My brother actually decided not to summit and waited for us instead. So we took off and after a little bit the aussie followed, I guess inspired by us brave chicks. In the beginning, I just kept thinking that any little mistake could kill me. Any slip or stumble could send you over the edge. I quickly flushed those thoughts from my head, thinking duh, of course I would die if I fell but I can't let those thoughts even enter my head. So I concentrated instead on each foothold and handhold. There are chains much of the way in which you can grab if you are feeling vulnerable. I was feeling pretty good until dw said watch out for that rock, it's slippery. She had actually slipped a bit on it but had a good grip with her other foot and both hands. Thank god I didn't know she had slipped until we were done. It may have freaked me out. We made it across the ridge and to the top which was the widest part of the whole trail. Everyone was all smiles and taking photos for each other and congratulating one another. It was a bonding experience and one which required some teamwork. There isn't enough room on the ridge for people to cross paths so one must step aside to let the other through. However, there isn't much room to step aside so you would ask this stranger on the trail if they had a secure hold and if you were ok to go past them. One of my worries was that someone coming down the trail would fall and knock me off the rock. Luckily, we had started early and missed most of the crowds.


first set of chains before the gnarly section

After we had completed the ridge, dw and I discussed whether we would do it again and we both said maybe, if someone we were with really wanted to do it. I even told another hiker that hadn't gone yet that it wasn't so bad. I also felt that my surgeries were scarier than this hike, a hike in which at least 9 people have fallen to their deaths. But after sleeping on it a couple of nights, both dw and I admitted that we were crazy to have done this and would probably never do it again! Frankly, I don't think it's worth the risk and you can get the same view, if not better, from the observation point hike and a lot less chance of death.

Speaking of risks, I will see my breast doc next week to discuss my options on keeping my breasts. I've managed to give her the slip for the last 7 months. Last she knew, I was hell bent for more surgery. But now I would rather keep the boobs and do surveillance. So got a voicemail from her office today asking if I had scheduled my bilateral mastectomy yet and if not, please come in for a followup. Jesus Christ! Yes I have uttered those words before but it was a bit of a shock to hear it on my voicemail. Like getting a message from dw to pick up milk and bread on the way home and might as well get a bilateral mastectomy while I'm at the store!

hell yeah, life is awesome!

2010-07-22T20:59:00.000-07:00

Got a letter in the mail today from my hospital. Figured it was either a bill or results from my mammogram that I had on monday. It was my results. I passed my mammo! I opened it up as I was walking my dog and tears of relief and joy ran down my face and I really didn't care who saw me crying. I am so happy! Yeah! I've been waiting for the dreaded phone call all week. The one where they tell you to come in so they can get another look at your boob because something weird is up. Not this time! No biopsy for me. Means that I can go ahead with my trip next weekend to the narrows. A biopsy would have kept me out of the water for two weeks. No lumpectomy or mastectomy in my near future means I can keep on working at the coolest job in the world! After my seasonal, incredibly boring (but much appreciated) job with the state ended I picked up a summer job at the garden I have been volunteering at. I get to be outside all day, taking care of beautiful flowers and working with great people, and I get paid for it! Life cannot get much better than this. Even though a week after I started working full time, my hands started bothering me in a kind of carpal tunnel way and I can't make a fist in the morning, I don't care. It has kept me off my bike but that is just temporary. I go to physical therapy on my day off and it is getting me through the week. This job is so mentally worth it. I smile all day long, even though it has hit 100 a couple of times it doesn't bother me. Every day at least one visitor thanks us for a job well done. Little kids run around (I work in the children's section) and scream, "hey you guys you gotta check this out!" or "I love this place!" Mothers bring their children and remark on how it is so much less chaotic than taking them to the zoo. And I have to brag, our children's section is so cool even adults like it. We have one volunteer that works here every day. He says the people are great and it is cheaper than therapy. I have to agree with him. I haven't even thought about going to therapy since I started here full time. This is therapy. I come home exhausted every night but happy and satisfied and filthy! I love getting dirty. I kind of look like pig pen by the time the day is over. I feel like a kid again (except for my aching bones)!

The one funny (odd, ironic) thing about my job is that it sits right above myriad, the place where our brca tests go to and the place that has a patent on our genes. So some mornings, when I get to work before the gate has been unlocked, I sit and wait in my truck, the one with a f*ck brca sticker on it, and watch all the people piling into the myriad lot on their way to work. One can never really get away from the frickin brca reminders! It's everywhere. But it ain't bothering me today.

nip it in the bud

2010-07-12T14:36:00.004-07:00

Thought I'd blog about colon cancer today since they have billboards all over utah at the moment reminding you to go in for screening if you are 50 or over. I, of course, am not over 50 but luckily did get a screening done last november and possibly saved my life. Who should get a colonoscopy? EVERYONE age 50 or over. People who may need one sooner and should discuss it with their doctor include type 2 diabetics, smokers, brca1 mutants, possibly brca2 mutants, those with a strong family history, those who don't exercise much or don't get enough fiber in their diets, those who have had inflammatory bowel diseases, like ulcerative colitis and Crohn's disease, those who consume large amounts of alcohol and those with symptoms.

Most people do not have symptoms of colon cancer in the early stages, but here are some things to look for as advised by the american cancer society:

Signs and symptoms of colorectal cancer

Colorectal cancer may cause one or more of the symptoms below. If you have any of the following you should see your doctor:

A change in bowel habits, such as diarrhea, constipation, or narrowing of the stool, that lasts for more than a few days
A feeling that you need to have a bowel movement that is not relieved by doing so
Rectal bleeding, dark stools, or blood in the stool (often, though, the stool will look normal)
Cramping or abdominal (stomach area) pain
Weakness and fatigue
Unintended weight loss

Most of these symptoms are more likely to be caused by conditions other than colorectal cancer, such as infection, hemorrhoids, or inflammatory bowel disease. Still, if you have any of these problems, it's important to see your doctor right away so the cause can be found and treated, if needed.

Of course most of the symptoms could mean anything! If you want a fun way to track your poo try this iphone app, poo log by Josh Richman & Anish Sheth MD, authors of "What's Your Poo Telling You?"

As for the actual colonoscopy, it was not bad. In and out in less than two hours (from waiting room to recovery and that included removing my polyps). I did need a person to drive me because I opted to be put asleep (wasn't anesthesia though). If you ask around, you should be able to find someone willing to leave you conscious for the procedure but you will be given something so you are not in any pain (as seen on the Katie Couric link on the left).

The fast and shit the day before is probably the worst thing of the whole procedure but is not as bad as I thought. I love food and couldn't imagine going an entire day without eating. I was allowed to drink clear fluids, eat jello and drink broth, so at least I didn't feel like I was starving. As for the toilet, stay close as the day goes on and have a good book nearby:)

Some people may be short on cash or lacking insurance. If that is the case, a lot of states have programs available for free screening. Here is a link for help in utah. Google your state and "free cancer screenings" to find help in your area.

Chances are if you are reading this and don't think you fit the bill for early screening, someone you know is probably over 50. Next time you talk to your parents, aunts, uncles, older cousins go ahead and ask them if they've been screened. You need to know their history anyway. And a reminder to my siblings reading this: you need early screening due to my polyps.

I've been told by someone that they are not going to bother with any type of screening because death is a natural process and they are not afraid. Well, I guess I wouldn't be as afraid if I thought I could go to bed one night feeling good and just not wake up. But death is not usually kind. My uncle died a painful, early death from colon cancer. Sometimes life is not kind either. I would gladly go through a day of the fast and shit and colonoscopy to avoid wearing a poop bag the rest of my life. Just my personal opinion...

On a happier note, fatty is taking pre-orders for his 2011 cycling gear now through next monday! Twin Six and fatty are donating part of the proceeds to livestrong. If you wear bike clothes check it out. And he has some cool hoodies for the low price of $30. If you are in the need for some new duds or even new water bottles, order now and help raise money for livestrong.

vote for FORCE: part 2

2010-07-07T17:42:00.000-07:00

I posted recently about how you can help the brca community (my peeps) raise money by voting on facebook. Time is counting down for the Chase Community Giving Campaign. If you are on facebook and haven't voted yet, please consider doing so. Here is a link to a radio clip about brca, FORCE and the Chase Community Giving Campaign by Teri Smieja on IROCK 102.7.

Here is a link to Teri's blog, Teri's Blip in the Universe. She is becoming quite the celebrity so check out her blog if you haven't already!

And here is a link for voting for FORCE. Thanks everyone:)

T

letting go, moving on

2010-06-29T18:07:00.000-07:00

I think (hope) I have finally reached the point of letting go of my self-pity and just getting on with things. By 'things' I mean mental things. I have been moving on with my life but still was kind of stuck in a rut of 'woe is me' even while I realized that others do have it worse than me. Not to belittle brca, but it is not the end of the world - that is, I won't let it be the end of my world. That being said, I'm kind of over talking about my life and my brca journey. I'm not really doing anything at the moment, other than surveillance (depending on my upcoming mammo and dr visit). And wt is doing well and healing and just about all filled up and waiting for her exchange. So I don't have much to share anymore, brca wise. I will probably continue to blog, but may try and change it up a bit and maybe focus on groups/people/organizations that are helping the cause.

It has been a year now since I flunked my first mammo. Almost a year since I found out I had cancer and almost a year since I first heard that four-letter word, brca. I've grown a lot in that year: learned a lot, cried a lot and changed a lot. It is time for me to shift my focus elsewhere and to shove brca to the back of my brain and only bring it out for dr appointments, breast exams, etc. Ha, ha! That won't likely happen but you get my point. I'm done moping and feeling bad. I'm ready to let go. So what if I might have to cut the bitches off eventually. I will get over it.

I just realized the other day that on my one year anniversary of my lumpectomy-reexcision surgery, I will be backpacking the zion narrows! How awesome is that! I've been wanting to do that ever since the day hike I did in the narrows several years ago. So you see, there is life after brca and it is great:)

blog roll

2010-06-23T09:38:00.000-07:00

If you haven't noticed, my blog list (on the left side of my page) contains some recent additions. Please let me know if you have a blog you'd like me to add. One blog that I added combines my new love, biking, with the whole reason my blog started, cancer. The Fat Cyclist blogs about his love of biking and also raises a ton of money for cancer through his blog. His writing is very entertaining and humorous and he is one of the top followed biking blogs in the states. I have pasted an article about him below and just want to add a disclaimer that his wife's story did not have a happy ending. Fatty continues to blog, raise money for cancer, and get out and ride his bike and enjoy life.

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

Susan Nelson lives strong while Fat Cyclist husband raises money for Lance Armstrong Foundation

July 14, 1:18 PMMichigan Mountain Biking ExaminerDiane Ursu

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In May 2008, Elden found this photo of Lance Armstrong in his email.

It started out as a simple blog about a "fat" mountain biker and progressed to a powerhouse for raising money for the fight against cancer. Elden Nelson is a witty mountain biker who thousands of Internet surfers consider to be a friend. They read his blog every day to enjoy his funny stories and unique viewpoint. They also keep coming back to see how his wife, Susan, is doing.

Win Susan!

"Win Susan!" is a phrase that is found throughout pages and pages of comments on the Fat Cyclist blog. Elden's readers have joined together to offer whatever support they can, whether it be spiritually or financially.

Susan first found a breast lump around Christmas of 2003. She underwent a mastectomy and chemotherapy. She got well and began working out to gain strength until she started experiencing hip pain. After treating it like a sports injury, she went to the doctor to find that her cancer had metastasized throughout her body. In 2008, tumors were found in Susan's brain after she had lost her ability to fall asleep.

Fat Cyclist readers have journeyed with Elden and Susan during her chemotherapy and radiation treatments. They eagerly read with hope and pray for strength for the couple. Kleenex boxes sit by computers worldwide as readers share in the joy and sadness of the Nelsons' life. They are also awestruck by the strength and courage of Susan.

While Susan's prognosis is undesirable, she continues to live life to the fullest extent that her body will allow. When she is able, she draws with her children and writes. She enjoys making jewelry, an art she can no longer practice on a regular basis, and created some pieces for a fundraiser for the fight against cancer.

Elden Nelson, aka "Fatty."

Be strong, Elden

What is particularly amazing about Susan's story is that it is told by her husband, Elden, who is affectionately known as "Fatty" by his readers. Elden's purpose has been to do everything he possibly can to make life better for Susan. This is his struggle.

When Susan was first diagnosed, Elden searched for a new job with better benefits so they could better afford treatment. After moving several times, they bought a home in a Utah neighborhood so Susan could be closer to friends and family. As Susan's cancer progressed, Elden made changes to the home so she could move around easier. It became a constant fight for Elden to accommodate his wife. He simply wanted to make things better for her.

Elden couldn't do it alone, though. He expressed his frustration on his blog, and his readers responded with prayers and advice. One of the greatest pieces of advice that was echoed throughout the comments was to keep riding. In order for Elden to take care of Susan, he had to take care of himself. He did not want to take away from his time with her, but mountain biking was therapy, and he knew he had to do it.

Fatty's fight against cancer

Fat Cyclist readers are quite acquainted with the "Win" Special Edition Fat Cyclist jersey, a jersey made by Twin Six with all proceeds going to the Lance Armstrong Foundation. Many of Fatty's lucky readers get to sport the fabulous jersey, and they wear it with pride.

Twin Six has been quite supportive of Elden and Susan and has made a lot of Fat Cyclist gear. In the fall of 2008, Twin Six went beyond the standard jersey to provide long sleeve winter jerseys, bib shorts, and arm warmers. Twin Six's generosity went way beyond providing fundraising product for Fatty, though. In November of 2008, for one week, Twin Six donated half of the purchase price for every Twin Six jersey sold to assist with Elden and Susan's medical costs.

Livestrong Challenge

In January 2009, Elden took on a big project – one that may be much more successful than he had anticipated. He rallied the Fat Cyclist troops to form Team Fatty with members from all over the country. Team Fatty set out to win the Livestrong Challenge.

Tour of California. Fatty decided that Team Fatty just was not enough. In February, he live blogged during the Tour of California and had the fantastic idea of having Bob Roll, former pro cyclist and Versus cycling commentator, shave his head if $5,000 could be raised by the end of the Tour. Over $8,500 had been raised and Bob was clipped on television. Lance Armstrong was even present for the moment of truth.

Team Fatty. Team Fatty continues to raise money for the Livestrong Challenge. Team Fatty raised the most money for both the Seattle and San Jose Livestrong Challenges. The Philly Livestrong Challenge will take place on August 23, 2009, and the Austin Livestrong Challenge will be held October 24-25, 2009.

As of July 14, 2009, Fatty's web site reports that $411,178 has been raised by Team Fatty. It is simply incredible how so many people came together to fight against cancer.

Elden and Susan celebrated their 20th anniversary on
August 13, 2008. Elden posted this picture with a single
sentence: "With the right woman, 20 years doesn't feel like very
long at all."

A story of love and dedication

Elden and Susan celebrated their 20^th anniversary on August 13, 2008. Twenty years is remarkable in and of itself, but it is even more amazing when faced with the challenges Elden and Susan have had to endure.

They are remarkable people. They have brought thousands of people together to fight a great cause. They bring joy and humor to the lives of Fat Cyclist readers. They also bring hope that love is real, and that is evidenced by Elden's devotion to Susan in her struggle with cancer.

They are like anyone else, however. They are raising four children – two sons and identical twin girls. He works to provide for his family. She is writing a novel. He rides bikes. What sets them apart is that they allowed themselves to rise above their challenge in life, and they inspire many others to do the same.

For more info: Fat Cyclist

the ride of my life?!

2010-06-17T11:52:00.005-07:00

<p>&amp;amp;amp;lt;p&amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/ride/united-states/ut/brigham-city/630126063253224473"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;2010 Tour de Cure Utah 100 Mile&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;br/&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;a href="http://www.mapmyride.com/find-ride/united-states/ut/brigham-city"&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;Find more Bike Rides in Brigham City, Utah&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/a&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;amp;amp;amp;amp;lt;/p&amp;amp;amp;amp;amp;amp;amp;gt;&amp;amp;amp;lt;/p&amp;amp;amp;gt;</p>

Well, I survived the ada tour de cure last saturday but I did fall a little bit short of my goal. My distance goal, that is. I surpassed the fundraising goal I had set of $500. $550 and counting so far! I have a few more weeks to turn more money in. Thank you everyone for both your monetary support and your words of support. All were appreciated:) Oh, I did met my goal of not needing any gel (at least for myself)!

The morning started great with a fasting blood sugar of 93. Normal people run sugars between 80-120. My sugars can range from 0-infinite. Well, not really because some of those extremes could kill me but I do run from the 40s to 200s often and occasionally will get even higher. Mornings are usually the hardest time for me to control so to start with a good number is a bonus. Of course, my number jumped to 200 by race start, but I was ok with that since I prefer to exercise around 180 anyway and I can drop very quickly when biking. But the first couple hours my number kept climbing and hit about 300 before it finally started going down. I was hesitant to shoot up (take an insulin injection) because I have dropped from 300 to 63 on previous rides so I let it play out and finally it started going down. So I finally had a snack at the third rest stop and my numbers were great after that. A nice steady, slow drop until the lunch stop where I tested at 102, had a sandwich and finished the ride with a 187 at the last rest stop and a 112 at the finish line. Of course I figured my exercise would still be causing my sugars to drop so I again skipped my insulin, ate one third of a chicken burrito and a hand full of lemonheads (candy), drove an hour home and tested at 450! I guess I really do have diabetes:) That's just a little private joke. When I was diagnosed with diabetes I felt like how do they really know I have it? They just take a little bit of blood or urine and tell you within minutes you are diseased. Seems too simple especially compared with all the tests and waiting to find out you have cancer.

The day started out pouring in salt lake city, but not in brigham city where the race was so that was very fortunate! The first 25 miles or so were fun and uneventful. I started getting a little tired after that which is no surprise because I've only biked more than 25 miles once this year and maybe twice in my whole life! Why the hell did I sign up for 100 miles??? I thought it was a great idea for two reasons: what better way to celebrate 25 years of living with diabetes then going out and killing myself trying to prove that I can do anything you can do better?:) The other reason being that I was mad at my body for what I've been going thru the last 11 months. I feel like it was trying to kill me so I thought I'd teach it a lesson and show it who was boss. I wanted to bike 100 miles and then stick up my two middle fingers and give my body the bird. But I rethunk that a couple days before the event. I think I need to give my body a big hug because after all, I CAN still do the things I enjoy and I haven't been kind to my body or given it much of a chance to recover from all my surgeries and procedures. So I'm not mad that my legs pooped out and I couldn't do the whole 100 miles. My heart was still going strong and there will always be a next time.

Above is a pic of me taken by zazoosh somewhere in the first 45 miles. I put my jacket on after that and left it on for the rest of my ride.

The middle of the course was the hardest. There was a long, gradual climb which then turned into a big hill which somehow I made it up. I was so happy because I thought the worst was over. For some reason I thought there was only one hill on the course. But it turns out I was just on a plateau and the bigger hill was still ahead. I was shocked and dismayed to see little yellow figures in the distance snaking up a mountain. I have to admit that once I reached that hill, I got off my bike and walked it to the top. I contemplated hitching a ride to the top but didn't want to cheat. The ride down this giant hill was not that much more fun for me because I really don't like going down hills very fast. Rode my brakes as much as possible and held on for dear life hoping that my front tire wouldn't pop off or get a flat. Finally made it to the bottom and then hit a nice, flat section that was my favorite part of the whole ride. Flew the next mile with a tailwind and truly enjoyed it. Wish the whole course was like that! The rest of the course was mostly flat but very windy and slow going. There was one more hill, which was really short and not much worse than an on-ramp, but I was disgusted with hills by then, and my legs were dead, so I walked up that one too! Made it to the lunch stop at mile 60 and had the best tasting sandwich of my life! Ever notice how food tastes so good when you are exhausted and hungry?

I am not one to make excuses so I'm not going to blame the weather as a reason that I did not complete the whole 100 miles. I did bike through the finish line, after taking a shortcut in the route and completed 85 miles, of which all were hard-earned and I am pleased with the effort that I made. Just 15 miles short of my goal? You may wonder why I couldn't go on for just 15 more miles, but I had to make that decision at mile 60 and I was pretty tired by then and didn't think I would even make it back under my own power. I decided to skip a 15 mile loop and head back to the finish line, 25 miles away. That last 25 miles was a bitch. Normally, I think this part of the ride would be nice because it was pretty flat but it was such a windy day and the wind was especially picking up here along with some rain and my butt was really starting to complain. I did pull over for a break on the side of the road several times and repeatedly had to tell the sag vehicles that no, I did not need a ride. At one point I stopped to wait out the wind because I feared I would be blown off the road. At that point, three young boys ran up to me from a nearby house and said they were about to hold their hands out to me as I passed by. Turns out they did that once and were handed a bunch of candy. I explained that I had no candy, just some gel which really wasn't that good. They questioned what it was and I explained that it was just sugar at which one boy smiled and said "I like sugar!" So I opened up a ginseng honey stinger for them, they tried it out and pronounced it great! Then a large group came by and the kids stuck out their hands and got high fives in return. As I trudged on they yelled out their thanks for the honey.

9 hours and 85 miles completed on a cold, windy day. I can't say that it was a fun ride. I did contemplate selling my bike a couple times during the ride. I wouldn't want to keep biking if all rides were like that one! I don't know what the official word on the weather was. It was forecast for 15mph but it seemed stronger. I do know that other towns nearby had 50+ winds that downed trees and powerlines. I don't think our wind was that bad but it wasn't good either:) I did have some good moments during the ride, seeing pretty flowers, fields of black-necked stilts, meeting other diabetic riders and people who were riding for family members. It was nice being able to pull out my testing meter and not feel like a freak at the rest stops.

The official numbers aren't in yet, but so far the utah ride has made over $406,000.00 for the american diabetes association. Last year, 17 million was made from all the tours across the states for this fight to cure diabetes.

Here are links to tour pictures.
http://www.flickr.com/photos/pazphotos/sets/72157624141786745/
http://www.zazoosh.com/events/305
I don't know how the bib numbers were assigned, but it is so cool that my number, 511, is a combo of my favorite number(5) and wt's(11) favorite number!

Well, I am not going to sell my bike and dw and I have signed up for another ride in september. It is a rolling 70 miler in moab to benefit livestrong and the moab cancer center. If you've ever been to moab, you know it is a beautiful place in the middle of nowhere. It is great that they have a place there for cancer patients to get treatment so that they don't have to drive hundreds of miles for radiation and chemo. We are looking forward to amazing views and riding for another great cause. Hoping for great weather and small hills!

vote for FORCE

2010-06-15T08:30:00.000-07:00

Hi everyone, I have survived my wild bike ride over the weekend and will post about it soon. Just waiting a bit for the official photos to be published and hear how much we raised so I can include them in the details. Below is a post by Teri Smieja from her blog Teri's Blip in the Universe. Please take a moment to read through it and vote for force as your favorite charity. FORCE has been an important part of my journey with brca and is an excellent resource for mutants like myself and also plays a role in awareness, legislation and the like.

By Teri:
If you had a chance to easily help Facing Our Risk of Cancer Empowered (FORCE) win $250,000, would you do it?
If like me, your answer is yes, then here is your chance. It won’t cost you a dime. All it takes is being a member of Facebook, and a vote for Facing Our Risk of Cancer Empowered as your favorite charity.
A campaign on Facebook called Chase Community Giving is going to be giving away a total of $5 million dollars to be split between 200 charities. The charity with the most votes will receive $250K, 4 runner-ups will receive $100K, and 195 charities will receive $20K.
FORCE is the only national nonprofit organization dedicated to serving the needs of and improving the lives of individuals and families affected by hereditary breast and ovarian cancer. They provide lifesaving information on the latest medical treatment and risk management, resources, and awareness.
Voting on Facebook starts on June 15, 2010 and the lucky 200 winning charities will be announced on July 13, 2010
What would FORCE do with the money if they won?
For starters:
$1,000 delivers the latest in BRCA research and information to 500 families.
$500 gives 60,000 visitors access to their website for one month.
$300 provides a scholarship to FORCE’s annual conference to one person that could not otherwise attend.
$200 provides life-saving information to 100 people through their newsletter.
$100 provides phone-based support and resources via the Helpline for one month.
$50 provides a package of informational brochures to doctor’s offices and hospitals.
Just think – if $2250 can do all of that – how much good could be done even if we only place among the bottom 195, and win the lowest amount of $20,000! That’s a whole lot of help, to a whole lot of people!
You may be asking yourself, “Why is this important?” For me, it’s obvious. As someone who has a BRCA genetic mutation, having an organization like FORCE on my side is invaluable. Without information and knowledge of what these genetic mutations mean, people can and DO die from hereditary breast and ovarian cancer.
Spreading information saves lives, and provides much needed peace of mind, education, and emotional support for those of us afflicted with this mutation.
If you are on Facebook then it’s very simple to vote. The first thing you do is go here:
http://apps.facebook.com/chasecommunitygiving
The next step is to join the movement by scrolling down just a little bit on the page and clicking the ‘Like’ button.
Next step: Click the big green ‘Search’ button and copy this text: Facing Our Risk of Cancer Empowered and paste it in the box that says ‘Charity Name.’
Click the big blue ‘Search’ button to the right of that.
After you click that, you’ll see Facing Our Risk of Cancer Empowered in blue lettering. Click it.
Scroll down and check the box that says: “Please display my name and profile picture below so this charity knows it can contact me to get more involved.”
Click ‘submit’. A ‘Request for Permission’ box will pop up. Click ‘Allow’.
Vote – and share (and share and share and share again) with your friends, and ask them to share with their friends, and so on. This is the key to getting the word out there, especially as we are only allowed one vote per person per charity.
* Reminder: While voting doesn’t begin until June 15th, you can go to the Chase Community Givingpage on Facebook and ‘like’ them at any time- just to give yourself a head-start.*

Special Note to Bloggers:
Would you dedicate one of your blog entries between the time-frame of June 15 through July 10 to this cause? As a blogger, you already have a voice, this is a great time for you to use it. It would mean so much, to thousands of people who are at high risk of hereditary breast and ovarian cancer. And hey, if you also ask your readers to dedicate just one blog entry to this cause, then that’s even more people we could reach.
Special Note to Facebook Users:
Would you be kind and dedicate a few of your status updates between the time frame of June 15 through July 12 to this cause? It doesn’t take much, just a few minutes of time, to help a very worthwhile cause. If you could ask your friends to vote for us too, then that would be awesome, and a great way of helping to spread the word about a very easy way to help a terrific charity win a whole lot of money.
Special Note to those who use Twitter:
Would you be a doll and tweet about this between the dates of June 15 through July 12, to help spread the word? I know you are limited to a certain number of characters in Twitter, so the shortlink to get to FORCE on the Chase Community Giving page on Facebook is: http://bit.ly/b2vDpb. Asking others to retweet it would be wonderful too. To make it really easy for you, all you have to do is copy and paste this in your Twitter What’s Happening update box: I just supported Force Facing Our Risk Of Cancer Empowered (FORCE) on Chase Community Giving! #chasegiving http://bit.ly/b2vDpb.
The more people that help pitch in to vote and spread the word, the better the chance that we have making it in the top 200 – and that is our goal!
Thank you so much for your time and your assistance!
If you have any questions about this, or have an idea of how to help me spread the word, please contact me either via this blog, or email. Thank you!

FORCE’s MISSION
To this end, FORCE has eight mission objectives:
• To provide women with resources to determine whether they are at high risk for breast and ovarian cancer due to genetic predisposition, family history, or other factors.
• To provide information about options for managing and living with these risk factors.
• To provide support for women as they pursue these options.
• To provide support for families facing these risks.
• To raise awareness of hereditary breast and ovarian cancer.
• To represent the concerns and interests of our high-risk constituency to the cancer advocacy community, the scientific and medical community, the legislative community, and the general public.
• To promote research specific to hereditary cancer.
• To reduce disparities among under-served populations by promoting access to information, resources and clinical trials specific to hereditary breast and ovarian cancer.

gu, my best and worst friend

2010-06-10T23:50:00.000-07:00

You have to love modern technology. GU wasn't around when wt and I were kids. Wondertwin used to carry around a baggie full of sugarcubes to counteract any emergency blood sugar lows. I carried little tubes of cake frosting. These days, things are much simpler with things like gu, honey stingers, clif shots and other energy gels. They are small and light and easy to slip into any bag or the pocket of your gym shorts or even tucked into your crew sock if necessary. They don't need refrigeration, don't get stale and are pretty durable. Yes, you can puncture them if poked with something sharp, like my dog's teeth, but usually they hold up to abuse pretty well.

I just packed up six gels to bring with me on my century bike ride this weekend. And as I packed them, my stomach turned a bit. Problem with the gels is that they are kind of disgusting. The taste is ok but I find the consistency rather gross. But they do work so well! I'd have to drink a whole bottle of most energy drinks to get the same amount of carbs into my body as one little gel, plus the gel raises my blood sugar quicker and doesn't leave me feeling bloated. I do really like the honey stinger fruit chews but they are too bulky to carry on such a long ride especially since I need to bring extra tubes, my raincoat and all my blood testing supplies. My goal on saturday is to make it to each rest stop with a decent enough blood sugar to not need a gel and be able to rely on normal food like bananas and bread and peanut butter instead. That is the tricky part. I am not too worried about my legs. I think they will fare the best. My concerns are my blood sugars, my butt (oh, it will be sore even with padded shorts) and my hands. My hands tend to fall asleep, especially the right one when I'm biking. I've been doing so much riding that now it falls asleep even when I'm not on the bike. I can just see myself driving home from the event bonking from low blood sugar, with a bleeding hemorrhoid (got my first a couple of weeks ago) and losing control of the wheel because my hands are asleep. Just kidding, I will sleep in the parking lot if I have to! But seriously folks, it is a fun sport and once I get over my nerves, I will have the ride of my life:)

recharging the batteries

2010-06-08T11:24:00.001-07:00

Ups and downs, good days and bad days, tears and laughter...that is the game of life. The last 11 months have indeed been quite the game to try and play. Probably the worst period in my life since my mom succumbed to the big C. Last Fall, I spent most of my time researching brca and breast cancer for hours on end. The rest of my time was spent crying and walking around in a fog. I was pretty depressed. I remember meeting my gi doc to discuss getting a colonoscopy. She picked up on my gloom and thought it was because I didn't want to get one but when I said I had already scheduled it she said oh, it must be the whole brca thing I was upset about. I have been lucky in that aspect: not only do all my doctors know what brca is, they also understand it is an emotional, difficult journey. So here I sit, almost a year after it all started. Just saw my bc social worker last week for a chat and we both agree that I am in a much better place now. I still have some fears and moments of sadness, but I have rejoined society and am being productive and making plans for the future. Like I said in my last post, life goes on.

How did I make it through this year? My wife was a big part of that, always there for me even if I tried to push her away, giving me hugs when I needed them and an occasional kick in the butt when I needed that as well! My family and my friends were there with their love and support and willingness to distract me with fun things to do. Music and the gym. I was unemployed the majority of the year and with dw off at work I had to find things to distract myself. I often went to the gym twice a day and had music on most waking moments. That was key for me. Exercise and sports have always been a part of my life. Not only do I love the physical aspect but it seems to do wonders for my mental state. And then winter came. Anyone reading this blog on a regular basis knows I love snow! I also love nature and getting out there and snowboarding really helped heal me. I think it even held off depression after my hyst/ooph as I was able to go three more times after surgery and one was a powder day-the best one I've had in years. I vow to take advantage of more powder days next year!

Winter is over but the fun doesn't stop. I've taken up a new sport, road biking. It started with the simple act of signing up for the tour de cure. Then I joined a team to ride with in the event and I started riding with them on sundays. I dragged dw with me on our mountain bikes and within a week or two we went out and purchased road bikes. It is a different world than mountain biking. Tight clothes, light bikes and fast rides. And it is a huge fundraising sport. Every weekend in the spring/summer offers up at least one opportunity to ride for a cause. My team has already participated in a ride for bikes for underprivileged kids and one for cancer research and has two big rides coming up for diabetes and ms. I'm not going to give up the mt bike because that is a rush in a different way. I love biking partly because you can cover so much more ground than hiking which gives you the opportunity to see more. But as a woman in menopause, it does not help out my bones because it is a non-weight bearing exercise. I will have to get off the saddle once in awhile and keep lifting weights and do a little running. I'd love to get back into the swing of tennis as well. That is such a fun sport that does wonders for your body without you even realizing that you are "exercising" for those of you that don't really like that word!

I was feeling a little funky and down what with wondertwin's pbm. It is hard to go through all this crap, but even harder to watch someone you love go through it. I'm snapping out of it though. Hard not to after seeing my sisters, then a camping trip with my sis-in-law and her hubby and a visit from some friends. And lots of biking of course, with my big ride coming up this weekend. And wondertwin went back to work yesterday. The game of life...bring it on!

life goes on

2010-05-26T09:24:00.000-07:00

I love buying cards that have cool pictures. Usually they are blank on the inside which is fine because often the writing on the inside can ruin it for me. This card (by nostalgiaville publishing) here though says "in three words I can sum up everything I've learned about life...it goes on." I picked it up while I was visiting wt and it was exactly how I was feeling. I've been sad lately thinking about wt's surgery and everything she would have to go through and I was a little teary on my flight out to see her. But once there, we didn't shed tears or lament. Surgery was over, it was done. No use crying about it. Life continues. We spent our time shopping, visiting friends, watching (sleeping through) movies and of course some doctor visits. We would find ourselves laughing at times and as wt tried to control herself I would ask her if it hurt to laugh. She would reply that it didn't hurt as much as sneezing:) One thing that really made us laugh was when I was vacuuming and wt was making a little video in which she was telling me that I should have surgery too so that someone could do all my housework for me! Yup, life goes on even after surgery. There will always be another dirty dish to wash, laundry to fold, a mountain to shred, a sunset to enjoy, a joke to share...

hanging with sis

2010-05-17T14:00:00.001-07:00

Hanging with wt one week out from her pbm. Path was benign and things are going pretty well. I got a look at the new girls, or start of them. Don't even notice that she has no nipples because of all the black stitches running across her new mounds. I have seen many pictures of reconstruction and seen some in person but I don't think I've actually seen any with the sutures still in. It looks painful but they don't seem to be bothering her too much. It sure doesn't make me want to run out there and get mine done, although wt keeps telling me that I can do it! It kind of looks like the lacing of a football but pulled even tighter and the skin is all puckered up between the stitches. Tomorrow, if she's lucky, she'll get some of the stitches removed and possibly the drains. Ah, the drains...everyone seems to hate them. Not only are they uncomfortable they also limit what clothes you can wear. She has been sticking to some light weight sweatshirts she found at macys that have pockets on the inside where she can stuff the drains which look just like hand grenades. And they come in shortsleeve or longsleeve which is great because it is pretty muggy here.

Just going to chill this week and take walks, visit with her friends, nap and play with the little twins next door. I also got to see my other two sisters briefly yesterday before they had to head back home. I was supposed to get in saturday nite but missed a connecting flight and spent the nite in the motor city. Knew I was pushing my luck trying to catch three planes.

That cool card above is by blunt cards, quiplip.com

help Lance

2010-05-12T17:48:00.000-07:00

Received the following email from Livestrong this morning and just created my virtual biker. It costs nothing to enter (just requires your email and name) and by doing so, we can help raise money to fight cancer. Livestrong is a great organization that offers all kinds of help to people faced with cancer, such as finding cheap places to stay during medical treatment, support groups, legal assistance, etc. Click on the link below to join the ride and if we get enough riders, radioshack will cough up $75,000. It is FREE to enter!

We only have 48 hours...

Dear Janine,

We have 48 hours to help LIVESTRONG raise $75,000 for the global fight against cancer. We need your help.
This morning we launched I RIDE FOR LIVESTRONG, a dynamic, virtual version of the Tour of California, where I will be racing starting on Sunday. This online event allows you to create your own virtual bike, tell us who you ride for (a survivor or caregiver who has inspired you) and race through the California landscape using your story to invite more people to join us in the fight against cancer.
When we talked to our partners at RadioShack about the campaign, they raised the stakes: If we can get 10,000 people to join the ride in the next 48 hours, RadioShack will donate $75,000 to LIVESTRONG. It’s an amazing opportunity and we are thankful for their support. But we can’t get there without your help.
http://www.livestrongaction.org/en/ride/jointheride
This year, cancer will become the #1 killer in the world. If we get 10,000 people to join the ride, the $75,000 gift will go a long way toward supporting survivors and pushing leaders around the world to dedicate more resources to the fight against cancer.
http://www.livestrongaction.org/en/ride/jointheride
The Tour of California, the largest cycling event in America, kicks off on Sunday, and each of us at Team RadioShack will bring a personal hero along for the ride. The I RIDE FOR stickers on our bikes will bear the names of survivors and caregivers who inspire us. At even the steepest climb in the race, they’ll remind us that, in the fight against cancer, unity is strength and no one should ride alone.
But we're just eight guys and there are millions of stories to tell. That’s why we launched I RIDE FOR LIVESTRONG, a virtual version of the Tour that allows you to create your own bike and tell your own story about who inspires you. Now, more than ever, we need to talk about the global cancer crisis—if something doesn’t change, one in two people will have to fight cancer by 2030. We have to fight back, we have to tell our stories and we have to push leaders around the world to dedicate the energy and resources necessary to see a world without cancer in our children’s lifetimes.
I RIDE FOR LIVESTRONG is a great way to build our movement and today we have a huge opportunity to generate support for the cause by raising $75,000. We need your help. Will you join the ride?
http://www.livestrongaction.org/en/ride/jointheride

LIVESTRONG,
Lance Armstrong

there's more than one way to tell us apart

2010-05-11T17:29:00.000-07:00

When we were little, wondertwin and I were pretty identical. We asked one time how did my parents know that they didn't mix us up at some point and were told that they could tell us apart by a birthmark I used to have. In grade school we wore matching uniforms. To tell us apart, my sister and I had to wear necklaces with our initial on them. As we grew up, it was easier to tell us apart. Once, while visiting dw's relatives, her grandmother announced that she could tell us apart because I was the fatter one! Well, there is a new way to tell us apart now, granny. We could simply lift our shirts. I'm the one with nipples:)

WT is back at home and doing great. Very cheery in fact, so I guess the drugs are working! First thing she said to me was, "Piece of cake. You can do it!" And she has said that about a thousand more times now. She can't wait to get a look at her 'chest in process' this friday. She underwent non-nipple sparing pbm with expanders.

Here is a picture of wt shortly after waking up from surgery, very alert. She sends her thanks to all the well-wishers.

twas the night before wt's pbm...

2010-05-09T19:10:00.000-07:00

I found the perfect card by american greetings the other day to send to wondertwin before her upcoming pbm (it's in the mail sis)! If only I could protect her (and everyone else) from the hard things in life, but I can't. I can just watch it happen and try and help her as much as I can. I'm trying to stay strong for her but it is hard because I know how she feels and how anxious she is and what she is about to undertake. I know what it feels like to crawl up on the table and wonder what you're going to look like when you wake up. I know she's tough and she'll do ok and will be happy when all is said and done but the anticipation leading up to surgery just sucks. Tonight, I will be taking a tylenol pm in hopes of getting some shut eye. My sis will most likely be awake most of the night. In the morning I will try and get one last call in to her before they wheel her into surgery then wait for updates from her dear friend that took the week off and flew in to take care of her. I will be flying in for week 2 and can't wait to give her a big, soft air hug. Much love, sis. See you on the other side.

race for the cure video

2010-05-08T12:08:00.001-07:00

The Salt Lake Komen Race for the Cure was this morning. Over 17,000 people were there and it was a lot of fun. All week I've been a little nervous about the event because I've been feeling kind of emotional. But I was fine at the race, in a great mood and no tears to shed. I was a little disappointed because I had to stop and walk a few times but I guess that will give me something to aim for. Here are a couple of videos I took. One is at the finish line and the other is some of the walkers at the end as we were going to our car. And here is a link to a youtube video taken of the event.

running, biking, panting, gasping, waiting, hoping for a cure

2010-04-27T17:41:00.001-07:00

I've got a couple of races coming up. Both use the word 'cure' in their titles. The Susan G. Komen Race for the Cure is coming up in a couple of weeks and is a fundraiser for breast cancer. I will be volunteering at this event and also running a 5k. I went to this event last year and I have never been at an event so large before. There will be thousands of people and unless you finish up front (not me) you will have to walk across the finish line because it gets so crowded. When I ran this race last year, I had no idea about the cancer brewing in my breast. I was there to support my sister-in-law and get some exercise. I fear that I will be overwhelmed this year and it might be hard for me to breathe well enough to run. Not only will I be there as a survivor but it is 2 days before wondertwin's pbm. damn

The other race I'm training for is the ADA tour de cure coming up in june. This is a fundraiser to find a cure for diabetes. I will be biking (or at least attempting to) 100 miles. I have done this race once before but only did 100k. I have a lot of training to do since I usually only ride 20 miles at a time but I think I can do it. It's a big year for me and I want to do something special. Last month I celebrated 25 years of living with type 1 diabetes. That's huge. Something I never really dreamed of. Outsiders don't always understand why we are looking for a cure. They think we already found one. While it's true that diabetes is no longer an immediate death sentence, we still would like to get rid of it! It's ironic that I've always been hesitant to complain about living with diabetes because cancer overshadowed it. The week that I got out of the hospital after my diagnosis, my classmate died of leukemia. How could I possibly feel sorry for myself when I was alive? As the years went by, I did start feeling a little sorry for myself, especially as my anniversary approached each year. But then my mother died (from cancer) and since I was diagnosed on her birthday I could no longer feel sorry for myself. Instead, I thought of her, and cancer. And now I survived cancer so I think I have the right to admit the truth to myself. Cancer is awful. Yes, yes it is. But it is still ok for my diabetes self, mutant 1, to want something better. To hope for something better. It's ok to say that I wish I didn't have diabetes.

I have been waiting for the cure for many years because I was told this would happen in my life time. A cure would be outstanding but it won't bring back the 16 year-old whose body just couldn't take the constant ketoacidosis. If a certain 24 year-old can turn things around and live long enough to see a cure, it still won't return the feeling to her feet, fix her vision or reverse the damage done to her kidneys. If we are lucky enough to see this cure it won't take away the nerve damage in my sister's stomach that has left her with gastroparesis, a potentially life-threatening complication. It may be too late for some of us and some of our complications, but this disease is like brca in that it is hereditary. So we dream of the day we stamp this out and none of our loved ones have to deal with it.

Seeing as this is my 25th anniversary, I am concentrating my fundraising on the bike ride this year rather than the breast cancer race. Here is a link to my fundraising page if you would like to drop a dime or two. Mutant 1 thanks you:)

play on

2010-04-21T16:40:00.002-07:00

I was surprised to read that a musician I like, Guru, died this week after a year-long battle against multiple myeloma. I had just pulled out his album, Jazzmatazz this past weekend and listened to it. It is a favorite in my collection. I have to admit that I can never remember his name so I file the cd under j for jazzmatazz. I didn't even know that he has several volumes of Jazzmatazz so I am eager to check out the rest of them. His music is a mix of jazz and hip hop and is perfect to listen to when chilling on the porch or poolside.

Here is a link to one of his songs, When You're Near.

I have to thank my brother for introducing me to Guru. I first listened to the cd here in utah either on my stopover when I was moving to cali or on a subsequent visit. It was one of several cds in my brother's car and once I slipped it in the player, I was in love. Later I asked him who that was again because I wanted to buy it and he sent me a copy for my birthday. Ever since I can remember, my brother has loved music and books. You could often find him laying on the floor, reading with headphones on. He doesn't just stick to one genre and often introduces new music to me. He introduced me to rap when he gave me a run-dmc tape that he was through with back in the 80's and they have been my favorite group ever since and rap/hip-hop remains my favorite genre to this day. Not surprisingly, my brother is now a librarian and he gets to select the music holdings at his branch!

When faced with death, one wonders what impact has their life had on others. Will I be remembered? Have I done anything worthwhile for others? What was my purpose in life? When a musician dies, they leave a lot behind. I listen to dead rappers everyday...tupac, biggie smalls, jam master jay, dolla. Their music still grabs me, makes me dance, sing, laugh, cry, relate, shake, rattle and roll. Long live Guru.

outplay, outwit, outlast

2010-04-11T04:07:00.002-07:00

After another great day on the slopes I was too tired and sore to sleep so spent some time tonight catching up on one of my shows, survivor. For those of you who may not watch tv, this show has nothing to do with cancer! It is about living with a bunch of smelly strangers for 30 days with little food, water or comfort and trying to get them to vote you the winner in the end so you can go home with a million bucks along with all your bug bites.

I readily admit that I love tv and I don't see anything wrong with that. Last year at this time, I applied for a job at an outdoorsy company that stated on their website something to the effect that if you love tv don't bother working there. What? Whatever. I am an active person that uses most of the shit they sell but I also find some time to watch tv. My cell phone even has a tv on it, although I'm not paying for that service at the moment. Are you going to tell me not to read? Because that is more of a time drain for me than tv. I try not to get too many books out of the library because while a tv show won't stop me from going outside and enjoying good weather, a book might. I can't put down a good book until I finish it. Sorry dog, you're going to have to hold it. Ever since I could read I've snuck a book and a flashlight into bed with me. Does that mean I shouldn't work for your company because I don't spend every free minute trying to climb the highest mountain? I enjoy stretching out on the couch and taking in some entertainment and encourage everyone to try it once in awhile!

Back to survivor: For those of you who do watch the show, man, who else thinks this is the best season yet?! I mean, I haven't watched every season but this one is my favorite so far. So much conniving amongst just about all the survivors, except maybe poor old coach. He just doesn't get that it is just a game! And the battles between the villains and heroes are fierce. Hard to tell who the real 'villians' are! Loved that last challenge in the mud. Rupert was priceless with his mud beard. They could make a tide commercial from that episode.

As much as I enjoy the show and like camping and am good at sports and would love to try some of the challenges and am good at lying, I wouldn't want to be on the show. For one thing, I'm pretty bitchy when I'm tired and they don't get a lot of sleep. I'm also bitchy when I'm hungry and they don't eat a lot. I also would hate to be outside all day without my sunscreen. And you hardly see any of them wearing glasses so some of them must be wearing contacts, yet how do they take care of them? You never see them with a bar of soap so how could they possibly be putting their contacts in every day? And what do the women do with their tampons? (not that I have to worry about that anymore) They don't have toilets or garbage cans out there.

But the number one reason I wouldn't want to be on the show is the water. They just don't have enough of it. Last season they showed russell dumping out people's canteens of water in the middle of the night because he wanted to create some trouble. I wouldn't dump them out. I would be sneaking drinks from them. I love to drink. I live to drink. Not just when my blood is sweet, but anytime. Don't mess with my 32oz nalgene. I bring it with me most places, unless I'm toting my 70oz camelbak. You should see me at work! During my 10 1|2 hour shift I down one nalgene of iced tea then refill it twice with water, have a 12oz can of carbonated flavored water, 8oz of joint juice and a 20oz diet pop. Ahh, the soda at work! My workplace has the best soda machines that carry almost everything. As someone that drinks diet soda, I'm usually limited to one or two choices at best. But my workplace carries diet coke, diet coke with lime, coke zero, diet pepsi, diet mountain dew, diet sunkist, diet dr pepper and diet sprite. It's like I've died and gone to heaven!

So who do you think is going to win survivor? Russell has made some pretty good moves so far! I'm sure boston rob is pretty pissed he got outplayed by him. And he sure pulled one over on tyson.

WWLS

2010-04-09T10:12:00.000-07:00

WWLS - what would L say? L is my breast cancer social worker. I have seen her 2 or 3 times on my own and twice with dw. I started seeing her because I had convinced myself that the pbm was the best choice for me but I was too scared to go through with it. L is not there to tell me if I'm making the right or wrong choice. There are no right or wrong choices as my survival rate is pretty much the same with or without surgery. L helps me talk through my reasoning and guides me towards the finish line of this brca journey. Well.. she helps me with more than just the brca stuff because now whenever I have an issue playing out her voice pops in my head and I start reasoning through things.

Ever since my hyst/ooph I have been second guessing my choice of cutting the bitches off. I was so ready to do it and when my surgery date was cancelled, I felt destroyed. So I went ahead with my other surgery in the meantime. And while I was waiting in pre-op (for a very long time) I felt so relieved that I wasn't there for the pbm. That's when I started the second guessing. And then of course, I had to go through the many weeks of recovery. All in all, recovery is really not that awful but I hate it just the same. I hate the interruption in my life and I'm really not looking forward to doing it all over again. Now that my recovery is just about over I feel ready to move on. I've got plans stacked up for May, I want to find a permanent job, go to school, hit moab hard with the bike this summer, etc. None of this moving on includes more surgery or time for it.

So WWLS? I don't want to go see L right now because I know what she would say. We would talk about my original decision and why I made that choice. And we would discuss if any of that reasoning has changed. And I would have to admit that no, none of it has changed. I still don't want to risk getting a recurrence or a new bc that might require chemo or lymph node involvement. I still don't want to go through with radiation. I still don't want to risk getting mets. If anything, I have more reasons to go through with the surgery now. My maximum out of pocket expense has almost been reached for this year, so financially it would make sense to do it soon. I have a big lump in my boob from the lumpectomy that will probably not go away at this point. I am nervous about going in for my next mammo as it seems like it would just pop or at the very least, hurt a lot. It does hurt a little just from touching it. Surgery would give me a lumpless new boob. Another reason for surgery is that I wouldn't need to get another mri. I'm still working on getting the last one paid for from 7 months ago. I don't need that stress in my life.

I tell myself that I decided to do the pbm because after reading the message boards I came to the conclusion that most people practice surveillance and then choose surgery when they reached a certain age. Well, I was definitely in that age group where everyone was/did have surgery by. Maybe my choice was based on fear! Ha, not. See reasoning above. I made a sound choice, I just don't want to stick to it. And I have to keep in mind my family history - which sucks. I could very well get more bc.

It's almost like I'm back to square one. I have chosen the pbm but am too scared to do it. At the same time, it is not square one. I am so much better now. I'm not depressed, I'm living life and enjoying it and moving forward. I don't cry all the time and when I do it's just little tears popping into my eyes instead of the heart-wrenching tears of yesterday. I'm not going to see L right now. I want to live in my little fantasy world (where I'm normal again) for a little while longer. I plan on getting my mammo in june, talking to my breast doc afterwards and moving on from there. If there is one thing that I've always known about myself it's that I can do anything I set my mind to. So when I'm ready, I know that I can do it. This whole brca life is fucked up, but I can do it.

everybody's doing it

2010-04-07T18:08:00.001-07:00

Seems like everyone these days has cancer. Martina Navratilova is the latest to face breast cancer. Click on this link and watch her clip with Robin Roberts (another bc survivor). She talks about the importance of getting your yearly mammo as well as how this has affected her. I love Martina and grew up watching her many battles against Chris Evert. She said she cried when she found out. It's ok Martina, we all cry.

When I was going through my own biopsy last summer, actress Maura Tierney (Abby Lockhart on the show ER) had just been diagnosed with breast cancer and was undergoing surgery. She was supposed to be on the new show Parenthood but dropped out to deal with cancer. She just announced that she is returning to work on the show Rescue Me. You go girl

menopause update: week 9

2010-04-05T17:43:00.000-07:00

I'm starting to lose track of how long it's been since my surgery, so this could very well be my last surgery update. Yeah! Guess that means I'm almost back to 'normal.'

I had some brain damage moments between week 4 and about week 7. As I mentioned before, I accidentally left my contact lenses on all night, probably for the first time in 25 years. I also left a burner on the stove, left the water running in the sink, couldn't remember the name of the apple mp3 player (ipod), couldn't remember how to find the bathroom in the dark then couldn't find my way out in the dark, had trouble finding my way to the cancer big house and my hospital - places I've been to millions of times, forgot to get off at my exit and didn't realize it until I passed two more exits. And who knows what else I screwed up. I mentioned my brain problems to my nurse practitioner at my 6 week visit and she smiled at me and said that's what happens as we get older. (Then she qualified it and said that if I start losing track of days and have a change in vision then I should see my pcp and probably get an mri. What? I don't have a brain tumor)! I said my symptoms just started after surgery so couldn't it be from a lack of estrogen? We discussed it a bit and she said that it is possible. People do start losing some brain function as they age and that is usually when they start losing estrogen. So what to do? Well, guess you could try taking some estrogen but they also say (and this applies to the old folks as well) 'use it or lose it.' Your brain gets stronger by introducing new things, experiences, jobs, stimulation, etc. And of course get the proper amount of sleep and eat right. I did start working around week 4 and after months of moping around the house doing nothing, it appears that my brain is making a come back. I haven't gotten lost in awhile and haven't done anything really stupid that I can think of in the last couple of weeks so I think my brain farts were just temporary.

I haven't bothered trying to figure out what triggers my hot flashes because they haven't been that bad so it isn't worth the trouble and I don't want to give up anything that I'm eating or drinking anyway! So really all I do is make sure I dress right for the weather and take my jacket off inside stores when I'm shopping so I don't start heating up. I bought a cute little desk fan at target for $6 and have it at work and it stops the flashes right away. Once in awhile I feel something that I've heard people describe as a hot flush. As opposed to the flash where my face feels hot and tight, the flush is kind of neat. All of a sudden you feel this huge warmth inside you and it just kind of flows right out of you in seconds. Kind of like drinking a shot of vodka, a little warmth burning in your gut.

I think that wraps it up for my menopause symptoms. Haven't noticed anything else going on. So just trying to get back to my regular workout routine prior to surgery. I haven't started running yet or doing crunches or lifting much. I have gone snowboarding a few times with fabulous results but just haven't been able to get back to the gym. That's a work problem, not a surgery problem at this point. Just don't have the energy after working 10 1/2 hours to go to the gym. I have to hand it to dw. She is gone at work for 14 hours, is taking 2 graduate classes and still goes to the gym after work. She is a superwoman!

the new health care plan

2010-03-31T18:19:00.000-07:00

I'm very excited to see what this new health care plan brings. Not really sure how everything will play out and what it really means but it does seem to offer some hope. I've been well aware of 'pre-existing' conditions for many years but only recently learned that the insurance companies place a life-time limit on how much they will cover you for. This worries me of course because I've racked up plenty of bills over the years and will continue to do so until the day I die and most of my life I've been on some sort of blue cross blue shield plan. Below is an email I received from livestrong about the new plan. I hope it turns out to be everything a mutant (and everyone else) could ask for!

Why it matters...

Dear Janine,

It was a long and difficult debate. We didn't always agree on every detail. But we came together around the principle that discrimination against cancer survivors must end. This week, after many years of failed attempts, the President has finally signed into law a reform bill that will balance the scales and give those of us affected by cancer a fair shake when it comes to health care reform.
Do we agree with every provision? No. Did we fight for more in some places and less in others? Yes. But at the end of the day, I'm proud to say this bill will have an enormous positive impact on the lives of cancer survivors.
To drive this point home, our team drafted a list of the five elements of health care reform we can all be excited about that are now the law of the land. Will you take a quick look at the Survivor's Top Five below and share it with your friends and family? It's important that we all know what's in this critical new law:
Survivor's Top Five—Health Care Reform

"Pre-existing" conditions are history. As soon as this year for kids, and for all individuals by 2014, no insurance plan can deny you because you're fighting cancer or any other illness.
You can't lose your insurance when you need it most. Within six months, no person can be dropped from their insurance plan when they receive a diagnosis of cancer or any other disease.
An end to "lifetime caps" on your benefits. You won't have to worry about your benefits "running out" as you're fighting to take care of yourself or a family member.
More coverage for young adults. Beginning in six months, you can stay on your parents' coverage up to the age of 26.
Support for clinical trials. By 2014, the law will prohibit new health plans from dropping or limiting coverage just because an individual is enrolled in a clinical trial.

Passage of this bill is historic, but just the beginning. We're going to continue our work as this law is implemented to push for policies that reduce the prevalence of cancer and support survivors. It's not always easy or neat, but it's important work. And with your help—like the more than 100,000 of you who supported our campaigns on health reform—we'll keep pushing for victories that lead us to a world without cancer.
Thank you and LIVESTRONG,
Doug Ulman, President and CEO, and the LIVESTRONG Action Team

I am back! (fuck you brca)

2010-03-27T21:33:00.001-07:00

I had such a great day today! Went snowboarding for the first time in about 8 weeks. I am about 7 1/2 weeks out from surgery and have been itching to go. I decided not to try it last weekend, even though our friend was here and went last saturday and sunday with dw. I had to take it easy for a little while because I had some bleeding but I did well the last two weeks and started back at the gym. Did a little weight lifting without any problems and just had to get out on the slopes today because the weather is great and the ski areas will be closing soon. My main concern was that snowboarding would be too hard on my abs since I've spent all this time trying not to use them. But right from the first run, I could hardly tell anything was different. My next concern was that my legs would crap out since I haven't done anything harder than walking on the treadmill for two months now. Much to my delight, I tore it up just as well as before surgery! Kept up with my brother and dw all day and hit the showers just one run before them. I thought I would have to take it easy and just enjoy the weather and the chance to snowboard again and be happy with that but it was so uplifting to find out that I haven't lost all my muscle and stamina that I've worked so hard these past several months to get. I've been a little frustrated not being able to do everything that I'd like to and knowing that I have more surgery ahead of me and more damn recovery time. I'm ready to be done and make some fun plans for the summer and get on with my life. So anyway, today felt really good.

It's been a great weekend all around. March madness is going on here in salt lake and my favorite team, the sryacuse orange (formerly orangemen) were here. Decided to go over to the arena after work thursday and try and get some cheap tickets. Talked a guy down from $100 to $50 for two tickets in the nosebleeds. Well, I didn't really talk him down, I just walked away and told him I couldn't pay that much. I told him I only had $60 but he must not have heard me cuz he said he would take $50. The face value was $85 for each ticket so we made out well and got to see butler vs syracuse and kansas state vs xavier. Syracuse ended up losing but we still had a great time and the loss didn't bother me as much as it has in the past. I guess I've learned that there are worse things that could happen. And there's always next year! I fell in love with the orange 25 years ago when I was first diagnosed with diabetes and ended up in the hospital for a week in the middle of march. Basketball was on night and day and although I played on my high school basketball team, I had never really watched it before so I learned a lot that week! I love cuse's run and gun style of play and all the dunks and alley-oops.

Received some great news on thursday from wondertwin. She had a biopsy this week on a questionable spot that turned up on her mri and subsequent ultrasound. 2 out of 3 people weren't worried about it but because of her brca status, they did the biopsy. Turns out it was just some fatty fibroid tissue. So now she has a bruised breast but peace of mind and is back on track for trying to schedule her pbm. A couple of weeks ago she got her first tattoo. She was thinking of doing some sort of med id tattoo for diabetes but came up with a really cool idea and twist on the standard symbol.

Here she is beating the shit out of the pink brca snake and fending off the blue diabetic snake. Go wondertwin!

shout-outs

2010-03-17T16:34:00.000-07:00

Got a lot of people on my mind lately so I thought I'd give them all a shout-out:

-first off to my little sis: happy birthday!
-and happy birthday a day early to a friend of ours!
-happy birthday in a couple days to my dear mom, gone but never forgotten:)
-hi to a friend that is under bed rest for the next ten weeks:( hang in there girl, hope it goes by fast
-shout-out to my dw who gets to keep her job and will soon be a federal employee. Love you, I know you were sort of hoping you could collect unemployment for awhile but thanks for working so hard!
-best wishes to a coworker of mine who had a questionable mammogram six months ago and has a follow up mammo this week. I know her mind is already gone to that dark place because she asked me about my surgeon and chemo (which I didn't need, thankfully)
-fingers crossed for someone near and dear to me that has to have a biopsy next week just as she was trying to get her pbm scheduled. 2 out of the 3 people that viewed the film said not to worry so hoping they are right. Hang in there girl and don't let the brca bastard get you down
-and to the rest of you, always thinking of you and hoping that everything is well and you are enjoying life

My hyst/ooph update six weeks out:
Had another follow up visit with my nurse practitioner last friday and given the ok to resume my normal activities. Even said I could give snowboarding a try as she tried to pantomime the movements, confessing that she never had been but imagined it would be a workout on my abs. So I did step up my workouts just a tiny bit and added the exercise bike on friday and just a little bit of lifting with my legs at the gym on saturday. Really didn't do too much and couldn't even feel it in my muscles afterward. Yet 24 hours later I started bleeding. I have been spotting just a tiny bit every day for the last couple of weeks but they expect some spotting as the stitches dissolve and everything looked good at my visits. I still had one more suture in me that hadn't dissolved as of last friday. I didn't even do anything on sunday except go out to eat and see a movie but late in the afternoon, just as I was about to go to costco, I noticed blood in the toilet and a little heavier than normal spotting. This made me a little nervous and I put on a maxi pad and waited a little to see what would happen. I didn't want to talk to the doctor because I didn't want to have to miss my first day at work on monday and wasn't sure what she would say. My post-op instructions say to call if I experience anything heavier than what the first day of your period would be like. I didn't bleed at all for almost the first three weeks so it did concern me a little but I decided to go shopping anyway and try and leave a message for my doc so that she would call me on monday (after I was at work). However, a live person answered the phone because the doc has an answering service. I wasn't prepared to talk to anyone so I said I had the wrong number and hung up! Did my shopping, came home and discovered I was still bleeding. Not what is considered heavy, which is saturating a pad in an hour or less. More like slow and steady so I fessed up to dw who scolded me for going shopping and called the answering service back and was paged through to my nurse practitioner. I was told to go on "pelvic rest" for the rest of the evening and call back in the morning, unless I didn't stop bleeding, in which case I would need to go to the emergency room. So stayed in bed for the rest of the night and didn't have any more bleeding by the morning. Now I am told to really take it easy this week and not even walk for very long. Good thing I am back at work and it is very sedentary. I only get up when I pretend I need to use the bathroom! On top of that I came down with a cold so I don't even feel like working out anyway. Guess I won't feel too bad when our friend gets here this weekend and she and dw go off skiing without me. Now pondering whether I will be able to handle a backpacking trip in about 30 days. Just don't know if I will be able to handle sleeping on the ground, carrying a 25-30 pound pack and hiking for about 10 miles a day. Guess I will have to play it by ear and see how the next couple of weeks go. Patience is not one of my virtues but it is something that I am learning.

living with uncertainty

2010-03-11T21:24:00.001-08:00

Things have been unsettled for awhile now for dw and I. Just before christmas, she found out her job was changing from a contract position to a federal position meaning at the very least, I would lose my health care benefits and even worse, she could lose her job. Now, three months later, we still don't know what is going to happen. She has heard through the grapevine that the army had to offer her job to a veteran since they base hiring on a point system and he has more points due to time served. DW is second on the list so if he declines the job then they will offer her the job. So today is the last day of her contract but no word yet. She will head to work on monday assuming that her job is still there, for now! This situation really distressed me back in december but kind of pushed itself to the back of my head after my breast surgery was cancelled. We have come up with a few plans depending on how things turn out and we're trying not to stress too hard because we have no control over how it plays out. The good news is that I am working again! I got a seasonal job that I had last year, so no benefits, but hopefully about 4 months of work. Still hoping to cut the bitches off sometime this year but can't say for sure when until dw's job situation is clear and I sure don't want to do it while I have a job! So when life gets hard for us we like to head to one of our favorite places in utah, moab. Below are some pics from canyonlands and arches. It was raining when we went to arches and we got to see the place like we've never seen it before, all covered in a fog. It was very cool and what we both imagine ireland must look like. Oh yeah, I'm feeling pretty good! Was able to do a couple of easy hikes last weekend and now at 5 weeks out, I forget to even look at my incisions because I just don't remember they are there. And by the way, I've been adding more blogs to my list on the left so take a look. And I added Jim's photo website under "websites I dig." Stumbled upon his site when I was looking for info on arches fiery furnace hike. He has lots of photo journals of cool hikes and lots of other types of pics such as eagles at farmington bay that I recently blogged about but his pics are so much better! He is an older guy that started hiking to improve his health after heart surgery, so check out his site if you're into nature pics or looking for a good place to hike in utah.

time to do the kegels

2010-03-04T18:30:00.000-08:00

Had to throw in this picture of the moon even though it has nothing to do with this post. It was prettier in person so just imagine this picture ten times better!

I had my 4 week post-operative check up the other day and everything looks good but I am still healing so I still have to take it kind of easy. Initially, I was told that I could return to my normal activities and the only restriction I had was to not insert anything into my vagina. But when I asked if that meant I could start weight lifting again and snowboarding I got a big no. Guess they don't consider those as "normal" activity. I am to go in again in two weeks to see if the stitches have done their job, but even if they have, they say I still have to be careful of getting a hernia. When I return to weightlifting I am supposed to start all over with low weights as if I am a beginner. I guess I have to build up my abdominal muscles again. Even though my abdomen wasn't cut open I have a few spots where the instruments were inserted. I don't know if they went through my muscle and now I have cuts that need to close up. I guess I'll ask them at my next appointment. I don't think my body is really ready for snowboarding anyway. I still haven't reached my pre-surgery speed on the treadmill which is a good sign that my body is still weak.

I found out that I no longer have my cervix. I had thought that they were just taking out the ovaries, tubes and uterus. I never actually discussed my cervix with my doctor although I had meant too, but forgot. I kind of wanted to keep it because of the rumors floating around that sexual pleasure may be affected adversely. I have heard of many women that take out the uterus but leave the cervix. That involves leaving a little bit of the uterus in there as well so I guess when I told my doc to take out the uterus, she assumed I meant the whole thing and went ahead and took the cervix. So make sure you let your doctor know exactly what you want if you are considering this surgery! In retrospect, I am ok with getting rid of the cervix. I found out that if you do end up getting cervical cancer and you took out your uterus, the cancer is harder to treat because now it can spread right to your abdomen. My pathology came back with atypical cells on the cervix, some endometriosis and a fibroid in the uterus and a little junk on the ovaries but they tell me that none of that was too unusual. And everything was benign and it is all gone now so nothing to worry about.

menopause update: I learned that the flushed face that I've been experiencing is a hot flash. I thought a hot flash would be worse, and I guess it is for some people. I haven't been bothered at night with them, at least I don't think I have. Our apartment stays pretty warm in the winter. We don't even turn the heat on. So I do wake up during the night and have to kick the covers off but I remember doing this last winter too.

My brain has been a little fuzzy since surgery but it seems much clearer now, or so I thought. I woke up this morning and was in the bathroom when I noticed how well I could see without my glasses on. Turns out that I forgot to take my contacts off the night before. I've been wearing contacts for at least 25 years and even when I was falling down drunk in college I still managed to remember to take them off before bed. So I don't know if I'm suffering some brain loss from not having any estrogen. I also saw a friend over the weekend and was going to bring her something on Tuesday when I saw her again but it slipped my mind until today. And for the life of me I can't even remember what it was. That might not be unusual for some people but I have always been super good at remembering stuff like that. If I said I would lend someone a book or dvd, I would remember 99% of the time to bring it to them the next time I saw them. It could be the lack of estrogen or just the lack of stimulation since I sit around most of the day doing nothing.

The most important thing I have discovered is that I can still function well in the sack:) Although I don't have the all clear to put things in my vagina, I have gotten the ok to have oral sex. My libido is just fine and I have not had any problems with vaginal dryness. As for my missing cervix, I don't think it will be an issue. My aftershocks were not as strong as usual but I was trying to take it easy on my abs and I'm sure I'm a little weak. I still have stitches along the top of my vagina. I am going to start doing kegels anyway just because it's a good idea as we get older. Kegels help strengthen the pelvic floor muscles and can help not only with urinary incontinence, but also with enhancing your orgasms. And something that I just learned today is that men can do kegels and get these same benefits! So here is some info on how to do a kegel that I have copy and pasted from http://www.ehow.com/how_5483159_benefit-exercises-strengthen-pubic-muscles.html

By Hannah Rice Myers
eHow Contributing Writer

Article Rating: (1 Ratings)

Kegel exercises, named after Dr. Arnold Kegel, the gynecologist who invented them, have long been thought of as exercises for women. However they serve a purpose for men as well. The exercises, when performed correctly and practiced regularly, are an effective method for treating incontinence and improving sex lives.

How Kegels Work

Kegel exercises help to strengthen the pelvic floor muscle, also known as the pubococcygeus (PC) muscle. This is the muscle which supports the bladder and anus in both genders, as well as the vagina in women and urethra in men. For both men and women, strengthening this muscle can help treat and prevent urinary incontinence, while improving sexual performance.

The PC muscle in men not only control the bladder but also the flow of semen. When practicing Kegels regularly, a man may notice an improvement in his ability to control ejaculations and firmer erections.

Giving birth can cause the PC muscle in women to become weak, resulting in urinary incontinence and reduced sexual gratification. Performing Kegels will not only provide her with increased bladder control, but an increase in pelvic vascularity. This means there are more veins in the pelvic area, resulting in an increased blood flow to the vaginal region. Ultimately this leads to stronger orgasms and greater sexual satisfaction.

Find Your PC Muscles

Wait until you feel the need to urinate and then stop midstream. The muscle responsible for this is your PC muscle. Try doing this more than once to become familiar with its location and the feel of the muscle.

For men, the next option is to lay on your back and insert your finger into your anus. You then contract your muscle as though you are attempting to prevent yourself from passing gas. The muscle you feel tightening around your finger is your PC muscle. Women can do the same, except you need to insert your finger into your vagina. The muscle you feel tighten is your PC muscle.

The last option is for women only. Pretend there is a marble beneath you on the floor. Squat down as though you are going to pick it up using your vaginal muscle. The squeeze you feel will be the muscle you need to exercise using the Kegels.

Begin Slowly

Once you have located your PC muscle, begin exercising it slowly. Start by squeezing and holding it for a count of three, then relaxing for a count of three. Do this 10 to 15 times, which equals one set. Add another one or two to your count every other day or as you feel your muscle become stronger. Do this until you are squeezing and holding your muscle for a count of 10.

Practice Regularly

Consistency is the key to success with Kegel exercises. Finding the time to practice them should be a cinch since they can be done anywhere without anyone being the wiser. However, it may be helpful if you set specific times of the day to do them.

Do three sets a day, in the morning, the afternoon and the evening.

Isolate the Muscles

The purpose of identifying the PC muscle before you begin is to ensure you are exercising only that muscle when performing your Kegels. Be sure your thighs, abdominals and buttocks remain relaxed; if they are tightened during the exercise, it will result in minimal progress being made with the PC muscle. You also want to breathe normally throughout the exercises--muscles need oxygen to become stronger and your PC muscle is no different.

Use Caution

Though you may be excited about the end result, you don't want to overdo it. Remember, this is still a muscle you are working and it's possible to strain or aggravate it if you do too many repetitions or hold each repetition longer than the muscle can handle. You need to build up your PC muscle strength slowly, and if you feel any pain or discomfort, stop and take a few days off.

snow day!

2010-03-02T12:29:00.001-08:00

Who doesn't love a snow day?! I remember the feeling as a kid, anxiously waiting to see if the forecast would be true that massive amounts of snow would fall from the sky forcing schools to close! You'd wake up in the morning and listen to the news as they called off all the names of the schools that were closed that day. It pretty much felt like christmas if your school was on the list! It was a double bonus: not only would school be canceled but we'd also have tons of new snow to play in. If we were really lucky, we'd get a couple of snow days in a row! Even more time to keep putting off the homework that never got finished:) Later in life I learned that kids aren't the only ones that look forward to snow days - the teachers do as well, if not more!

Now that I'm an adult how do I capture that feeling again? Work usually expects you to show up even if the schools are closed. I remember one time before a big storm was to hit, we were told to get up early so if we needed to shovel we would still get to work on time. Nice! But we were dealing with deadlines so what are you going to do. And if you live somewhere warm, you never have that hope of a snow day. An earthquake day or hurricane day just doesn't seem as exciting. There are some things that give me joy similar to the snow day. I absolutely love taking a half day off on a beautiful sunny day and going to see a baseball game. Most teams have day games every so often. Not much beats sitting in the sun, sipping a beer, knowing that everyone else is still at work:) Some people are lucky to work at places that expect you to call in "well" instead of sick. If it is a gorgeous day or an epic powder day, they expect you to come in late or not at all.

Life is more than just working and paying the bills. It is easy to sweat all the normal day to day stuff and get caught up in the grind. It is easy to put off all the fun stuff and let time slip away. I've spent all this time worrying about surgeries and lamenting body parts that I am going to lose or have lost already and then I am reminded that this kind of stuff happens all the time, even to non-mutants. I know two people in the last two months that underwent laproscopic surgery to remove ovarian cysts. At least one of them lost an ovary in the process. They have to go thru the same recovery process as me, although they might not have had as much time to plan it. I'm not saying that everyone needs to start worrying and run around in a panic. My point is that we can only do what we can do to try and stay healthy. The rest is out of our hands. Don't forget to live in the meantime. Go and find your own snow day and have some fun.

it's not paranoia, it's precaution

2010-02-24T14:33:00.000-08:00

Things are starting to return to normal. My appetite is getting a little better. It was repressed for the first few weeks. I still wanted to eat but seemed like I got full quicker than normal. Slept on my belly for the first time today and there was no pain or pulling sensation. I'm not noticing the flushed face as much although I still get it. My bowels are starting to behave -yeah! The scabs are starting to come off my incisions and at least two out of three look like they won't leave much of a scar. I'm walking on the treadmill a couple of miles every other day. Still get a little tired once in awhile, that's why I only go to the gym every other day but I do take my dog out a few times a day as well. I have my post-op appointment on Monday and hopefully will get the all clear-all healed message and start doing all my activities again.

Did a lot of running around this weekend since I'm feeling good and have more energy. As we were leaving one store to head to another, an armoured truck pulled right up next to us and I hurried dw out of there. I lamented that I should have used the restroom before we left because the next place we were headed wouldn't have one. DW suggested I go back in and use it. At this point I asked her if she wasn't worried at all that there was an armoured truck at the entrance to the store and was a little surprised to hear that no, she wasn't worried at all. She didn't seem to have a care in the world. Before you mistake me for someone that is afraid of every little thing and life itself, let me explain. Several years ago a mutant and two armoured guards entered a bank. Only one of us walked out of there on our own two feet and one left in a body bag. I'm not afraid to go to the bank or the atm, nor do I run screaming when I see an armoured truck but I like to think that I'm a little wiser for the experience. I don't go looking for trouble. I notice the trucks now and I have waited several times for them to leave before I will walk into a store. I know it is very rare to get caught up in a holdup but really not as rare as you would think. I remember when I lived in minnesota, someone was killed in the middle of the afternoon right in front of target and I think it was an innocent bystander, not even the guard.

So that was on saturday. On sunday, we did some more shopping and low and behold, another damn truck parked right in front of the store we were about to enter. This time dw says "we don't have to go in there, let's go next door." Then the truck pulled away and all was good. I know she was just being sensitive to my needs and if I wasn't there I'm sure she would have just gone right in. This is my segue into my monthly reminder to check your breasts/pecs! I figure most of you ignore me because you just don't relate to what I'm saying. I can't even get the people closest to me to do a self-breast exam. About 1 in 8 women will get breast cancer at some point, most will be older. But why not get in the habit of doing it now and get to know all the little harmless lumps and bumps so that you will recognize when something feels different. Go ahead and feel your boobies, or grab a partner and have some fun:)

While I'm on my soapbox, let me also remind you to take care of yourselves and listen to your bodies. I remember when my mom was dying, a very close friend of my parents found out he had prostate cancer and it was very serious. He had blood in his urine, but for whatever reason, did not go to the doctor. We all do stuff like that. Maybe we don't have insurance, or money or we are afraid or we just don't have time to be sick. Sometimes our problems fix themselves, but in his case the waiting proved fatal. Me, my siblings and my friends are all getting to that age where shit starts to happen to our bodies. Please take the time to see your doctor for a tuneup! Ok, I'm done now, thanks for listening:)

taking timeout for fun

2010-02-18T20:55:00.000-08:00

Last weekend dw and I went eagle watching at farmington bay. Tried to do this last year but waited too long and missed them all although we were lucky enough to see one fishing by the side of the road when our friend jc was here. I was about a week and a half out from surgery last weekend and I think I was still feeling a little tired but I can't even remember now how my belly felt. It was great getting out in nature and seeing these awesome birds! They are so beautiful, majestic and powerful. It was funny watching them hang out with the seagulls. The gulls were so noisy and the eagles never said a word. I was expecting the eagles to take a swipe at the gulls just to get them to shut up but no blood was shed.

Wow, seems like surgery was so long ago! I had to triple check the calendar because I can't believe I am only two weeks and two days out from surgery. The whole hospital thing, gas pains and discomfort is almost a blur in my memory. I have to be really careful about my movements because I feel almost back to normal. The problem is if I try and get up using only my abs or try and pick up something that is too far out of my reach I am reminded that things inside me aren't healed yet. Caught dw staring at me last nite and thought she was admiring my hot bod but instead she said "you're walking like normal!" Yes, to the unsuspecting eye, I am perfectly normal. I feel good. Still a little tired but not enough to take naps anymore. I've gone out every day this week driving on different errands. I've snuck in a little bit of household chores although I'm not supposed to:) I've only had the one night sweat so far and no hot flashes. Still getting a flushed face and generally warmer than usual. But nothing really to complain about. I thought it would be a lot worse and maybe I will experience more as time goes by but I can definitely handle things as they are.

I felt pretty happy this week. I was perfectly content reading, watching the olympics and getting out for my daily errand. I've come a long way from those early days when I first learned what brca was and was totally devastated. My insomnia has disappeared. My attention span has returned. I'm starting to look ahead and past this thing. I guess you could say I have finally accepted it.

the heat after menopause

2010-02-15T12:13:00.000-08:00

Got this really funny Hallmark card from dw yesterday! Inside it says "you still get me hot." So fitting in more ways than one! Can't say I've had a hot flash yet but my skin is usually warm or hot now. I can feel the heat escaping from my head. DW thinks she has been perimenopausal her whole life since she has always been hot. I call her my 'toaster.' She always keeps me warm in the winter and I have to push her away in the summer. Don't know what we are going to do now that we are both hot. Maybe get a fire extinguisher for the bedroom or crank up the air conditioner:)

I did run some menopause experiments over the weekend, as I said I would in my last post. This might be too much information for my family and friends but of interest to those of you who are contemplating surgical menopause and those who are just naturally going thru it. I can say that my libido has not disappeared since surgery and it doesn't look like I will need to worry about lubrication. DW wouldn't let me go all the way because she is worried. I'm trying to talk her into next weekend but she prefers to wait until after my doc appointment in two more weeks. God, I hope it goes by quickly! I've been told that things are usually going to be about the same as they were before surgery, so if sex was good before it should be good after. But everyone is different and you never really know until you shut down the estrogen how your body is going to react. Some of us might need a little help after surgery or even if we don't 'need' it, we may want to have some fun and change things up and take our minds off of all our new scars, new boobs and/or loss of body parts. There is a great shop called good vibrations in the san francisco and bay area that has oodles of toys and lubricants. I've been in there and it is very nice and doesn't feel like a skanky porn shop. They also have an online store.

I also experimented with soda and alcohol over the weekend. Had some diet coke around dinner time and I did not experience any hot flashes or night sweats. Had a beer with dinner last nite. This was the first time I had alcohol since the hysterectomy and I didn't get a hot flash or night sweat that evening. I did feel very buzzed after about half a glass though so it might have been a little too soon for me to start drinking. Sometimes I forget that my body needs time to recuperate. I feel pretty good and my energy level is getting better and better every day. I'm not taking naps anymore and I can walk pretty fast. I'm not in pain but I can still feel something where my ovaries used to be. There is some kind of pressure there and I'm sure it would hurt if I started running. I would like to get back to the gym this week and start doing some walking on the treadmill. I have been walking my dog several times a day but that doesn't make me break a sweat. I can tell that this week is going to be tougher on me mentally. My high of having surgery is starting to wear off, I'm not in a sleepy stupor anymore yet I won't be able to go workout hard or even do much around the apartment. I'm not supposed to be doing any cleaning or laundry or stuff like that so not too much for me to do. The olympics are on so that's great! I love watching them, especially the winter games. I'm happy right now but I can feel a little bit of gloom creeping in. Maybe it's just the weather outside. Very overcast. I'm hoping for some sun this week:) That always makes me feel cheerful. I will be able to drive this week so I'm going to have to keep myself busy and plan some fun little day trips. It was really nice getting out of the apartment this weekend!

the menopause experiments

2010-02-11T16:00:00.000-08:00

I've decided to have a little fun with this whole, sudden menopause thing. As you may know, I am not taking any hormones and I was suddenly thrust into the world of surgical menopause just over a week ago. So far, I have only had one night sweat. That's what I'm calling it. I don't think it was an actual hot flash unless I happened to sleep through that part. That was on superbowl sunday and happened to be the first time I had caffeine post-surgery (a small glass of diet coke, to be specific). Caffeine (and alcohol) are suspected to be causes of hot flashes and night sweats. That day, I had the soda in the evening. So yesterday I decided to have another glass and see if it would result in another night sweat. This time I had it before lunch and no, I did not experience anything bad overnight. Today, I am pushing it. Just had two glasses of diet coke at 4pm. Let's see what happens tonight!

Now since I am new at this whole thing, and still recovering from surgery, I'm not sure what may be menopause symptoms and what may just be recovery symptoms, so bear with me. Besides the one night sweat, I've also been experiencing a flushed face (feels taut, hot and red), hot skin and cold hands. The cold hands come in handy as they feel comfortable when placed on my flushed face. Either I am getting used to the flushed face, or it has been getting a little bit better in the last couple of days. Or maybe it depends on the weather. I'll have to keep an eye on that before I jump to conclusions. I have been dressing in layers and try and shed as much as possible as soon as I come in from the cold and then put some back on as needed. I think it has been helping. My mother had a penchant for sweaters that zipped all the way down because they were easy to remove. Now I wonder if this was something she picked up while she was going thru the change or did she always like them?

The stereotype of a woman going thru menopause is that she is bitchy. Up until last nite, I think I've been doing ok and actually been in a very nice frame of mind. To be honest, I can't really blame my mood last nite on the lack of hormones. I am notoriously bitchy when I'm tired and by the time dw gets home from work I am ready to be carried to bed. So I'd have to blame the bitchiness at this stage on still being in recovery rather than menopause. More time is needed to see if I turn into a menopause bitch. Personally, I think my sense of humor has remained intact.

This weekend is valentine's day. What a perfect time to test out if my libido survived surgery! Not that I can go beyond first or second base. My doc would like me to wait until my post-op appointment in 3 weeks until I swing for the fences. But a little necking should give me a good idea if my mojo is still around. I suspect it is. We have had a few kisses but it has been hard to tell what I'm feeling since my muscles and everything else down there is in recovery. My ovaries and uterus were removed through my vagina after all, so it may take a little time for things to return to normal.

If anyone has questions on menopause or an experiment you'd like me to try, I'm open to comments/ideas. Say perhaps you'd like me to perform a patrón experiment. Simply send me a bottle and I'd be happy to see how many shots it takes to produce a hot flash.

bed sores and tales from the other side

2010-02-09T12:45:00.001-08:00

No, I don't have bed sores but I feel like I should! Been sleeping so much this past week. I've had a hard time keeping my eyes open as dw pointed out in her guest post. I have to correct her though, I have closed my eyes more than once with a cup of tea in my hand! Need to stop doing that before I seriously injure myself! I think I am turning the corner today. I haven't had a nap yet and only have a slight inclination to do so. Today marks one week since I had my surgery. It is also the day I was supposed to get my boobs cut off and get them reconstructed. I mentioned in a previous post that I wasn't sure which surgery I was least looking forward to. As I sat and waited last tuesday to have my hysterectomy, I realized that I was relieved that I wasn't there to get my boobs cut off. That surgery still seems very scary to me. Of course, I am going to do it. I know that it's in my best interest given my personal history and my family history. I'm just not really looking forward to it. The recovery is going to be so much worse than what I'm going through now. I hate being a patient and I hate being told that I can't do certain things. This week will be tough on me as I am sleeping less and feel more like doing the things I've always been able to do, but I still have to take it easy. No driving for another week, no household chores for another two weeks and no working out hard at the gym for another three weeks! I don't know how I'm going to stand it but at least I'll have some more options once I can start driving again. Nobody made me do this surgery. I did sign up for it and I knew what I was getting in to. Doesn't mean it was or will be easy. I chose one of my rugby t-shirts to wear out of the hospital. I figured it was only fitting. "Tough rugby love. Sometimes it hurts."

I don't play rugby anymore. It was something I discovered after college and did for about ten years. It is not an easy sport, especially at that age when I was finally discovering that there were other things in life more important than sports. The time commitment was incredible as was the beating on your body and your wallet. But the rewards were more than worth any pain. I liken these surgeries to rugby. Yes, there is going to be some pain, mental and physical, but in the end it is all worth it. My risk of ovarian cancer was about 30% and now I can rest easy. I just got my pathology results back today and I beat the clock! Everything was benign. I don't even know how to process that information. I don't expect good news anymore when I talk to the doc. That's something I can't wait to work on - how to relax! Or chillax, as the kids say today.

I was doing pretty well at the time of my last post. Things started getting worse friday nite. I got really bloated at dinner and then was up many times during the nite with diarrhea. So saturday, I decided to skip the laxatives (I was only taking a half dose anyway). I actually went out on the town that day. Wanted to wear jeans instead of track pants but my incision sites said no. They are much uglier and bigger than I expected. I have three horizontal cuts on my belly about an inch long each plus a cut in my belly button. I also have two little marks just a little bit bigger than a needle, which is more along the lines of what I was expecting for some reason. They aren't particularly painful, just hit the wrong spots when you put clothes on. I have been wearing track pants and folding the waist band down so it doesn't irritate them. DW took me out to the library and to get our dog from my brother. I felt a little nauseous after being in the truck. I may have been sick from not taking the laxatives because I ended up not pooping at all that day. I also was in kind of a cold sweat most of that day and the next morning. Sunday was not too bad. I think I went back on some laxatives and was able to go a couple of times. That nite though I did wake up in a sweat. Not too different from waking up with low blood sugar, so I had to test my blood sugar to make sure if this was just a menopause thing. That is annoying! Normally when I wake up sweating I just get up and eat something. Now I have to figure out why. Monday was the worst day. I had so much gas pain I couldn't even leave the apartment to try and take a walk. Just paced around inside, with occasional unproductive visits to the toilet where I moaned and cursed. Kept hitting the milk of magnesia until I finally got some relief in the afternoon. Of course, that eventually turned into more diarrhea. I prefer the diarrhea to the constipation, but it is tiring. Feeling much better, stomach wise today. These last two days have brought a new symptom. My face feels flushed and hot, for hours at a time. A little uncomfortable but I'd rather deal with that than more gas pain. I'm not taking any drugs yet for the menopause. I'm waiting for things to settle down from surgery and try and see what things are really going to feel like. As for my belly, stopped taking the pain pills and ibuprofen around friday or saturday morning. I am back down to pre-surgery weight and my belly is no longer distended. I'm still walking slower, but I am mostly pain free. The muscles are a little weak still but I don't need help getting up from a chair or bed. My brain is still operating slowly. It took me hours to write this post. I am going to give in now and take a nap. So glad I am a week out from surgery instead of just waking up in recovery!!