Wednesday, October 12, 2011

new girls on the block

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.

Wednesday, October 5, 2011

And the mastectomies were because...?

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.

Friday, September 23, 2011

if you can't outrun it, overthrow it

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.

Sunday, September 11, 2011

guest post: a few words from wondertwin

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 1st 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 1st!” 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 1st, 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.

Tuesday, August 30, 2011

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

Today's post features a guest post by David Haas who blogs as a cancer patient advocate on the Haas BlaagDavid'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:

By: David Haas

Thursday, August 25, 2011

shaken up

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.

Wednesday, August 10, 2011

life in the slow lane

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.

Wednesday, July 27, 2011

my ass hurts

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 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.

Sunday, July 17, 2011

I am the lucky one

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.

Tuesday, July 12, 2011

post-surgery pics: unconstructed

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.

Tuesday, June 14, 2011

lowering my expectations

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:)

Wednesday, June 8, 2011

a bitch of a patient

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!

Sunday, June 5, 2011

on my tip toes

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.

Sunday, May 22, 2011

knock me out already

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.

Monday, April 25, 2011



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!

Saturday, April 16, 2011

death is natural, most of the time

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.

Wednesday, April 6, 2011

the big day is finally over

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!

Wednesday, March 30, 2011

national social workers month

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:

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
Association of Oncology Social Work

Friday, March 25, 2011

one of the many places that can help

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

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

Wednesday, March 16, 2011

it starts now

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.