happy, happy, happy!

December 31st is celebrated all around the world. The number one reason would be to celebrate the end of one year and the start of the next. I don't usually get into new year's that much. I never really thought it was that big of a deal and I am not a huge party girl so often I don't even stay up until midnight. But this year it feels different. I am looking forward to saying goodbye to 2009. It was a hard, hard year to say the very least. 2010 will not be easy but I am looking forward to a fresh year, hopefully finishing all my surgeries and moving on with life and discovering my new normal.

DW and I have a couple of more reasons to celebrate on the 31st. For one thing, it is dw's birthday! Yeah, she turns 37 today!!! As we head out to california, she laughs that we will be spending her bday with her cousins playing wii. Kind of like birthday parties of her youth! I am happy with that since I am still a kid at heart and she is happy because she is addicted to wii. Don't know if we will stay up til midnight but if we don't, please give a cheer for us and sweep 2009 out the door.

Our third reason to celebrate is it's our anniversary. We celebrate the anniversary of our first date, for lack of a better day since we never had a ceremony. Our first date was 9 years ago and we have to say, it was pretty awful! But fortunately, we already had a good sense of what we liked about each other so we kept trying and our second date was so much better:) One thing led to another and we became a couple. Things were so good for us in the beginning that we both worried that it was too good to be true and surely it wouldn't last. Of course, that faded after awhile and we no longer think each other is perfect. We have our good and bad moments just like any normal couple. We've been through a lot together. We've made tons of good memories. The good times are easy and fun to share. We've been through some tough times in the past. Those times were more stressful and a little harder to deal with but we made it through. We've never faced anything as hard as what we are going through right now and I can say I've never felt so close to dw as I do now. In the beginning, we were both in shock and stuck to each other like glue. No impatient words or fighting. We were so kind and understanding of each other. Things are a little more normal now! Can't be perfect forever but we still lean on each other so much through all of this. Mostly it is me leaning on dw. She has been so calm and attentive to my crazy mood changes. I can cry at the drop of a hat now. When I am frozen with fear or worry, she is there to talk me down and reassure me and give me a hug. Okay, trying not to get too sappy here! I'll just end this post saying that today is a happy day for us and a day to celebrate.

Happy New Year's to all of you and may you have lots of good times in 2010.

get up, damn it

I get knocked down. But I get up again. You're never going to keep me down. I love the song Tubthumping by Chumbawamba. Not only are the lyrics inspiring but it is also sung with such verve that you actual believe that you can get up again and nothing is going to keep you down. I do have this cd and I think I will play it tomorrow as I can use all the boost I can get.

I've always been a lucky person. I win those dumb carnival games where you choose a number and spin the wheel. I win raffles and drawings. I get warnings rather than speeding tickets from the police. Things generally work in my favor. So during the times when things aren't going so well people tend to tell me that everything is going to work out. I told my wife the other day that I was sick of hearing that things are going to work out. She said, "What do you want them to say? That you're screwed?" Hmm, good point. Guess I am just tired of words. I don't want to hear that everything is going to work out. I want proof. Or better yet, I want things to be better already.

I know, I know...my life is not so bad when compared to others. I need to count my blessings, keep my chin up and concentrate on controlling the things that I can. I have learned a few things along the way that help me bounce back quicker from each new complication. I learned from the month of July that I can't just sit around and worry and feed my face while I wait for tests, results and surgeries. The one thing that I do have control over is what food I put into my body and the sweat that I can get out of it. And I learned that when I do work on making my body feel better that my mind feels a little better too! Keeping busy and trying to be productive are key ingredients for me in trying to find and maintain happiness. Since I'm not working I do have a lot of time on my hands and it is easy to sit around and mope. While I do spend time looking for work, that in itself is a cause for depression and certainly hasn't been as productive as I've liked! I did start volunteering at the food bank and the really nice thing about that is I can go in whenever I want for as long or short as I want. No need to sign up for a specific time so it is very convenient. Winter has been a great diversion what with going snowboarding. And this month is going to go by real quick. Our trip to Cali in 4 days is going to be just what the doctor ordered. It is perfect timing. Get to see the in-laws and my friends and just kick back and catch up with everyone. Then we have a friend coming here for the long MLK weekend for some skiing/boarding. Before you know it, if all goes well, I will be under the knife and have two less things to worry about.

crying over real boobs

I never dreamed that I would be crying because I might not be able to cut the boobs off. Just a few months ago I would have been happy if you told me I could skip radiation, tamoxifen and keep my boobs. Now I find myself stuck in a state of limbo. DW found out yesterday that her job is going federal. What that means is that I will no longer have health insurance. Also means dw needs to reapply for her job. We don't know when that is going to take effect but it could be before my surgery in February. And I haven't been able to find work yet so no chance of getting my own insurance that way. Not sure if I'll be able to get cobra, or even if I do, what kind of coverage that will consist of and if we can even afford it. Just last week, the Domestic Partner Benefit and Obligations bill passed through the senate that would enable gay domestic partners of federal employees to receive health benefits but who knows when that will actually take effect. So for now, we are trying to take it day by day and I'm trying to come up with a plan b. Talked to my gs here and while she could fit me in January for mastectomies and delayed reconstruction she said young women don't usually like that route for psychological reasons (no boobs) and the cosmetic results don't always turn out as well later. She did say that I should qualify for an insurance that utah offers to cancer patients and that it is better than medicare but I wouldn't be able to go out of state for surgery. So I will have to see how much that insurance would cost. And need to talk to the boob goddess and see what we can do.

meet the tods

Yesterday I finished up most of my pre-op testing. All I have left is some blood work that needs to be done a couple of weeks before the big day. I am looking at that and maybe one other medical tod appointment over the next 50 days. Kind of anti-climatic leading up to the biggest surgery of my life! Things are going to start getting real hectic though. Still need to make travel arrangements, figure out what to pack, go to cali, clean this place up, and try and stay healthy! I am starting to get nervous again and my sleep patterns are starting to slip. Put a request in to my bcsw to see her after the holidays so add another 1 or 2 tod visits before surgery.

Whether you need a whole team of docs or just a couple key docs it is nice to find some you like before you are faced with an emergency. It's a good idea to establish a relationship with a primary care doctor and a dentist. These are the two you will probably see the most so make sure you find someone you like. Here is a little breakdown of my team:

the primary care physician (pcp) - I researched hard looking for this doc when I first moved here. It is hard to find much info online. The docs that did look cool either weren't taking new patients or weren't taking my insurance (we had weird insurance back then but fortunately dw's company switched to something better) so I took a gamble and chose this doc because I thought the practice was in a gay friendly area of town. Turns out it's not but she is gay friendly and even more important, she is exactly what I need. She is very attentive, listens to my concerns and keeps the pressure on to take care of myself. And she gets it. She understands what a tough year it was. She asks about my mental health, not just the physical part. I also like this office because it is easy to get an appointment, they handle all the insurance stuff and they draw blood in the office so it saves me a trip to the phlebotomist.

the dentist - this guy was my sis in law's dentist. Her new insurance doesn't cover him so she goes somewhere else now but I'm happy with him. He is very easy to get in to. Doesn't force me to have xrays if I don't want them. Runs just a small office and he does all the cleaning himself. His assistant is just that, an assistant. He seems like he knows what he is doing and as a side hobby he restores cars. His office handles all the insurance stuff. What's not to like?!

the general surgeon (gs) - she was referred to me by my pcp, who actually is a patient of hers because she has atypical cells in her boob and is keeping close watch on it. She is good at getting the emergency appts squeezed in as needed. DW and I were not expecting much when we went in the first time. From my experience with my hand surgeon, you wait for about an hour to get in then he sees you for 30 seconds. This is not the case here. She is willing to spend as much time as you need talking over things and wants you to ask questions. In fact, if you don't have questions she wants you to write some down and bring them in at the next appt. She returns phone calls promptly and is willing to do anything to help me out like writing letters to my insurance company even for surgerys that she is not going to perform. Her office staff is excellent. So nice all the time and very prompt at getting me any paperwork that I request. If I wasn't cutting off the boobs, I would have been very satisfied with the outcome of my lumpectomy. The scar is in an unobtrusive spot and growing more invisible by the day and my boobs still match pretty closely. We couldn't be happier with our gs.

the gynecological oncologist (gyn/onc) - referred by my gs. Also highly respected by my ps (and vice versa). Wasn't too hard getting in for the first visit. I have only seen her once but will be on an every 6 month schedule at least until I remove my ovaries. Her office is in the same hospital as my gs, gi, breast center and heart center so she has access to all my records which makes it very convenient for me. I am comfortable with her, as much as anyone is comfortable with a stranger sticking their hands in places that are private. She gave me her candid opinion about surgery without coming across as rude or pushy and I respect her for that honesty.

the boob goddess, aka the plastic surgeon (ps) - I found her on my own. Good old google! She has a website and I have been on a couple different cancer boards looking at threads from some of her patients. I haven't found any bad comments yet. Her credentials are amazing. All the things she has accomplished and given of herself puts me to shame. She is only a few years older than me! She has offices in chicago, new orleans, charleston and here in slc but only does the bilateral reconstruction in charleston and new orleans. DW and I met with her here in September. We feel very confident that I will be in good hands in February. And I didn't have to settle for looking at pictures of her work. She arranged for one of her patients to meet me at the hospital right before her second stage surgery. I got to see her reconstructed diep boobs in person. I have to say they looked really great. Except for the fact that she was missing nipples and had some scars, you wouldn't know that they were not the real thing. I have also spoken with another one of her patients, who I found through FORCE, and she was extremely happy as well. Found another one of her patients through a blog and she also said she would do it all over again with her as well. She is also highly respected by my gc.

the genetic counselor (gc) - referred by my gs. She works at the big cancer house and I get her services for free! I had already tested positive for brca2 before I saw her and did tons of research so thought I knew everything there was to know but she does know much more than me! When I saw her I hadn't decided if I wanted to do the pbm yet. I was thinking she would help me decide but she was so neutral that it wasn't a driving force. Although I guess some of the info I learned did help me make my decision. I only saw her once but I have emailed her several times as questions come up and she is very good at getting back to me.

the breast cancer social worker (bcsw) - I wasn't a believer in therapy. I like to gut problems out and am very good at getting over things and burying them away. But I knew I would need some help in order to get through this surgery. Surgery is something I want to do but I'm scared of it at the same time so I asked my gc to hook me up with some help. My bcsw is also at the big cancer house and free! I only get her for a limited time though as she offers short term help but it is long enough to get me to February 9th. I did not think that someone that isn't brca+ could understand what it's like and really help me out but I was wrong. It has helped me for sure.

the oncologist (onc) - this guy is well credentialed. Can't say that I instantly bonded with him though. But that could just be that I don't like where he works! It's unnerving going to a place where radiation and chemo patients are hanging out. No offense to any of those patients but it is scary thinking that could be me. I only need to see the onc once a year I think. Not really sure why I need to see him or if I will be back. I'm not on any cancer drugs, don't need radiation or chemo and most of my high risk parts are going to be gone so I may be drop kicking this guy off my team:)

the ophthalmologist (eye doc) - I have been seeing an eye doc rather than just an optometrist ever since mutant 1 came along. I value my eyes over any other part on my body so I always make time for this doc even if I don't have insurance. Now I also need to watch out for melanoma of the eyes as it is not just a skin problem. My doc here was recommended by dw's coworker and coincidentally my pcp is one of his patients as well. Oddly enough, one of his assistants is brca+ as we discovered when asking her about the effects of tamoxifen on the eyes.

the dermatologist (derm) - this guy is my newest team member. I will be going about once a year to check out my moles for changes. My brca2+ brings an increase in melanoma risk as well as the fair skin that I inherited and this high altitude doesn't help either. I like this guy. He is very kind and also said my skin looks much younger than my age. How can you not like someone that says such nice things to you?!

I have more tods but most of them I will probably rarely see and this post is long enough as it is. I will leave it at that for now.

number 50

This is my 50th post! I never in my life would have imagined I'd share this much about myself. I'm a quiet person. I don't talk much about myself and I don't ask a lot of questions. I figured a person's business is their own and if they want to share then they will but I'm not going to pry it out of them. But I'm learning that maybe people do want to share but they just don't know how. It's ok to pry a little and let them know you care. Everyone needs someone to lean on at some point and most of us want to be there for each other.

For lack of something better to talk about, here are a couple of excerpts from my journal that explain a little bit about paranoia. This is something that has been creeping into my life since all the testing commenced. And from what I've read from other survivors and mutants, this is fairly typical.

12/03/09
So now that I have calmed down a bit from my polyp worries I am now worrying about a weird looking freckle/mole on my back. It just looks kind of strange to me. I can see it when I'm looking at my boob scar. It seems to be 2 different shades and kind of large and irregular so I think it should be checked out. Going to see my pcp next Fri for blood workup and have her look @ it. But don't know if I want to wait that long. May call dermatologist and set up a full body look over. What would my life be like without something to worry about? Is this my new 'normal'? If so, it sucks.

That mole checked out fine and the dermatologist says my skin looks very healthy. Yeah, guess I've been doing a good job applying sunscreen and wearing a hat! So my next entry wasn't for another 15 days. That means I was feeling pretty good and didn't have anything to get off my chest.

12/18/09
Well, went to the dermatologist instead of having Dr W look at the spot. Had him do a whole mole-mapping thing where he measures each mole and charts it. He said I look good and that one mole is fine. Said my skin looks much younger than my age. He was very nice and took the time to make small talk and wish me a good holiday. I thought he'd be kind of gruff and no-nonsense since he's also an army medic and has done a few tours already. So no melanoma for me! Now I'm worried about lung cancer as I wait for my chest xray results. I have a copy of the film but I don't know how to read it.

So why am I worried about lung cancer? Some of it is just paranoia but I have felt for a long time that something is not totally right with my lungs. I have never mentioned it to my doctors because I figured it is just asthma or maybe chronic bronchitis and I didn't want to have another disease. But now that I know I'm brca and I had bc then this suddenly becomes lung cancer in my head. And one of my aunts had lung cancer. Even though she was a chain smoker and I have never smoked ever. My logic is a little skewed but that is what happens. The mind games never end.

conversations overheard on the lift

You might be wondering lately if this is a blog about snowboarding rather than brca/cancer! I offer no apologies for that cuz I think snowboarding is so much nicer:) I was able to take advantage of my time off to go again today, another $15 special deal day. It was a beautiful, sunny day. Lots of lift lines today because college just let out. When there are lift lines it is standard practice to fill the chairs to maximum capacity. This often means grouping strangers together on the same chair. You would think that such close proximity to people that you do not know would refrain you from talking freely about things that we really don't want to hear, but no it doesn't. And this ain't vegas baby, so I'll share. Most of these conversations seem to come from the twenty-something male riders. They like to talk about chicks mostly, or what jumps they are going to hit or sometimes both. I learned that one guy has been working on getting twins for the last three months and was excited because they were from idaho which according to him and his buddy, girls from idaho are easy. They can't be too easy if it's been three months now. Another guy was pissed cuz he answered his cell phone and it was his girlfriend and she was mad at him and of course he has no reason why. Maybe it's because she knows you talk to your buddies about how idaho girls are easy? Then the chair stopped for awhile and one of them said he was about to jump off...or piss himself. Nice. Why don't you go ahead and jump! Another ride up was with a guy who has been dating and things are turning more serious. Marriage may be in the future but a difference in religion makes things tricky. Plus the fact that she doesn't want to leave utah and he's not sure he wants to stay when school is over. His buddy urged him not to let anyone pressure him into doing something he may not want to do and says that 'engagement' is always a good out. It takes things to the next level but he can still back out if he wants to. And this engagement should be for at least two years, no use rushing into things. Another ride up was pretty harmless except for when the chair stopped, yet again (power problems), someone wondered out loud if the cables have ever snapped on a chairlift. This is NOT appropriate conversation when dangling mid-air. Then there were the three that were making fun of the not so good skiers and snowboarders below. Pointing them out and claiming the bad ones as teammates of each other. They clapped for one poor guy stuck in the powder and said "go team!" The girl in their group did admit they were a**holes so at least they acknowledge their rudeness.

And so it goes...these are the days and the lives of the snow junkies.

can't keep these feet from dancing

Ha ha, this post had to be interrupted before it started so I could dance to my favorite song for the 4th time today! Empire State of Mind by Jay-Z and Alicia Keys is in the height of its popularity and thus is on the airways every hour. You all should give it a listen even if you don't like hip hop cuz it just might make you dance too:) Click on the link above and you'll see the video.

So my good mood continues to shine through and nothing is bringing it down for long. I've taken the advice of my bcsw and am trying to find things to fill my time rather than sitting around and eating, drinking and sleeping brca all the time. Now that the snow is here it is getting easier! DW and I went snowboarding/skiing on Saturday and had a great time. We did get over a foot of snow since that last time I went and there was some powder to be enjoyed. It was coming down all day Saturday and now we have a 71" base which was only 24" a week and a half ago! Do you see why I didn't want the tram flap reconstruction which would have cut into my stomach muscles? Can you picture falling in several feet of powder and trying to get up without all your stomach muscles? Remember that your arms are of little use because there is nothing solid to brace them against. And I made the mistake once as a newbie of taking my board off in a pile of snow. You quickly sink to the bottom and it sure is hard to get the board back on! To get up out of the powder you basically have to grab the bottom of your board and rock back and forth until you have enough momentum to stand so don't get rid of the abs!

Good news on wondertwin's pathology of her ooph - no ovarian cancer for her! Celebrations all around:) Her surgeon called her that evening after surgery and told her that everything looked great and that the only thing that concerned him was that our little sister was not getting brca tested until april which is how long she has to wait to get in to see the genetic counselor. He actually confronted my little sister when he gave her wt's surgery update and asked her why she hadn't been tested yet. He kept asking 'who told you you had to go to a counselor to get tested?' He wanted to drag her upstairs and give her a kit to take home. Yes, it is true that you can get tested in most doctors offices and maybe that is a better option if it takes months to get into a genetic counselor but some of those doctors really lack the skills at explaining such life-changing information. So luckily, my other lil sis has an appt with another counselor well before April and they will probably go together. As for my ooph, I have a call in to my gyn/onc to see when I can commence with the gutting. I was hoping to squeeze it in with my pbm but that is a no go. I am hoping they will let me do it while I am recovering from the pbm so that I can overlap the recovery period a little but I am afraid they will probably make me wait at least 6 weeks between surgeries. I just don't want to be laid up all summer! I gots things to do, places to hike, mountains to bike:)

I have been getting ready for my surgery, which will be here before you know it! I have several pre-op tests to get out of the way. Had my ekg and chest x-rays done last week. These are pretty standard tests before a long surgery. They want to make sure there won't be any problems when you are on the table. Next week I will have a stress echo and ultrasound of my carotid artery. Usually, only older people or people that had chemo need the stress echo but because of mutant 1, my pcp thought this would be a good test to do. And we'll blame mutant 1 for the ultrasound too. This isn't even required by my surgeon but I had asked about it before when I was freaking out about my health so my pcp thought we might as well do it when I see the cardiologist. Can't be too careful, I sure don't want to stroke out on the table! Other than that, I will just have some blood work left which can't be done until a couple of weeks before surgery.

Tomorrow I head to the dermatologist for a skin check and mole mapping. This has nothing to do with surgery. Just something I should do once a year now because brca2+ brings an increased risk of melanoma. I decided to do it right away because since the bc and then the colon polyps, I have developed a little bit of paranoia:) Yes, I guess I am kind of a worry wart now. I've been looking at this funny spot on my back that I noticed when trying to see my boob scar so I didn't want to wait any longer before checking it out. DW keeps asking me why I'm looking at it all the time. I know it's probably nothing but I can't help myself. I am proud to say though that I haven't been losing any sleep over it. I figured I made the appt, there's nothing else I can do about it for now. Just keep trying to keep busy. This Wednesday is another $15 snowboarding day at brighton plus a sack of groceries for the utah food bank so count me in! And just signed up to volunteer at the food bank. Figured I might as well do something worthwhile with my time while I am trying to find a job. And keeping the music flowing...

don't think I forgot to nag you...

I didn't remind you to check your boobs and pecs last month. I was just taking a time out because I was upset with the new guidelines put out by the United States Preventive Services Task Force. You know, the one where they said women under 50 shouldn't get mammograms and shouldn't be taught how to exam their own boobs at home. There are all kinds of comments swirling around about these new guidelines. Some say the insurance companies are trying to save money. Some think we may be getting too much radiation. Some say that the mortality rate has not been reduced so it hasn't done any good to start at age 40. And some say mammos and self breast exams have resulted in needless fear, biopsies and false scares.

Obviously, I don't count in the new guidelines because I am high risk. Anyone who falls in the high risk category follows a different set of testing that should begin way before age 40. But you know, when I went in for that mammo I didn't know I was high risk. This all came out after I found out I had cancer. So for me, the new guidelines could have killed me. And yes, I probably would be one of those women who wouldn't bother to go until I was 50 to get the mammo. And no, I hardly ever examined my own breasts. BRCA is not a common word in most households and not even at some doctors' offices. My wondertwin's doctor knew nothing about it and had to be educated by Myriad, the testing giant for brca. My breast surgeon knew about it but I never would have met her if I didn't already have cancer.

But let's step away from the high risk group and talk about the general population. From what I've learned from my tods, breast cancer does not follow any particular rules. You could get bc even if you have no family history. It could be a bad cancer or something not so bad like mine was. I asked my pcp what she thought about the new guidelines. She said it is upsetting and said it was hard enough to get women to go in before to get mammos and now it will be near impossible. She says she sees plenty of women in their 40s with bc and she feels eventually the insurance companies will stop paying for mammos for those that do want to continue to get them in their 40s. And the American Cancer Society issued its own statement about the new guidelines and is continuing to recommend that women in their 40s continue screening.

We all have choices to make in our health care. No one makes you go to the doctor and they certainly don't force you to have a mammogram or perform a self breast exam. These are decisions that you alone can make. I just hope that you take the time to do some research, talk to your doctor and make a decision based on facts rather than what is easier to follow.

waiting on the sidelines

 This is a picture of me and my wondertwin with our friends' twins. (I'm in the plaid shorts).

Wondertwin had her ooph this morning and is in recovery after a successful surgery. She did have one cyst removed which wasn't a surprise because it was detected on the ultrasound. Most likely this is not anything to worry about. She also had some endometriosis which was burned off during the surgery. We hope that was the cause of some of her symptoms assumed to be associated with her diabetic gastroparesis. She was not very hesitant going into this surgery because she felt like something screwy was going on in there.

It's hard sitting here in utah while my sis is in ny recovering from surgery. But it is nice to know that she is in good hands with my little sisters and all her friends helping out. One of her friends (and next door neighbor) scrubbed in on her surgery and assisted as the Physician Assistant. And she was right at home in the hospital where she works. I woke up a few times during the night to check the clock. And when I knew she was in surgery, my heart kind of stopped for a moment as I realized there was no going back for her. It's a little scary, maybe because I have to face the same thing. These prophylactic surgeries are so weird. So necessary but at the same time, we could always change our minds at the last minute. It is not like death is going to come tomorrow if we don't have surgery today. Usually. Sometimes after the ooph, some brca+ women get their pathology back only to find out they were in the beginning stages of cancer. How lucky is that? Ovarian cancer is not something to mess with and that is why we put ourselves through such extreme measures to prevent it.

Get well soon, sis!

learning how to learn

When I first found out I had cancer I didn't know a whole lot about it. Yes, my mom and dad both had cancer. You'd think I would know more than the average chick. In fact, when my mom was dying, my partner at that time was an immunologist. I used to stop by the lab with her as she played with her mice and rats and petri dishes and proofread her painfully boring papers about antigens and what not. But like most things that I find sad or hard, I didn't do any research about my parents' cancers. I find it easier to ignore certain things as if that will make them go away or they won't affect me because I don't know about them. Like a little kid pulling the blankets over her head thinking the boogie man can't get her because she can't see it. For years I did not watch the news because I found it too sad and depressing. Of course my ignorance didn't improve the world because I did nothing to try and make a difference.

When the radiologist called me and told me I had dcis I needed to write it down. I never heard of it before. I'm not really sure what he said after that but he said he would call my primary doc for me and explain everything and then she could give me a referral to a surgeon. I don't think I asked any questions during that phone call. I didn't know what to ask. I didn't know anything about breast cancer. I remember once wondering what stage my father's bc was but also not understanding what the stages meant anyway. Is a 3 good or bad? Just like when they take your blood pressure or check your cholesterol. What's a good number? I didn't know what any of that stuff meant. So when I got off the phone I immediately had to google dcis. I wasn't even thinking about losing my boob at that time, I just wanted to make sure I wasn't about to die. And from what I read it didn't sound so serious. In fact, when dw and I were sitting in the exam room waiting to meet my general surgeon, we were laughing and joking around when she walked through the door. And when she started talking about brca I was a little more somber but still didn't understand the situation. I told her I figured I would get cancer some day since both my parents had it. It wasn't a big shocker. And from what she told me about my biopsy, my dcis was not going to be that bad and I might not even need radiation depending on the final pathology. So when she mentioned that I could wait for my brca test results before deciding on a lumpectomy or a bilateral mastectomy I thought she was nuts. Why would I cut both my boobs off when I could just take a little piece out and probably be cured? We went home with my lumpectomy scheduled for the following week and I was comfortable with my decision. I googled brca a little but didn't find much info out there. Had my surgery and another surgery and got my brca+ results back. My pathology was good (stage 0) but not the greatest (comedo) so a little bit more aggressive dcis but still nothing life threatening. Still felt very comfortable with my decision of a lumpectomy and was ready to embark on radiation therapy then be done with it all.

I took two weeks off from cancer then started some serious research. Went to the bookstore to look at cancer books and see what I could find out about this brca stuff. Stumbled upon the FORCE website and finally found some resources that would help me in my understanding of all this. There I found research articles, recommended books and testimonials from other brca+ chicks. I found my way to the cancer library at the local cancer institution and checked out a bunch of books. Some were general bc books that had a little info about brca in them and some were books written by brca+ women who described their journey with facing and making the surveillance vs surgery decision. I was on the web almost 24/7 for the next couple of months. I had a hard time sleeping so when I say 24/7 I mean it! I wasn't too happy about what I was learning because everything led to surgery. Based on my age (young in the 'normal' world for cancer yet old for the surveillance route), my brush with cancer already, my family history (on the higher side of the 'high risk' brca+) and from what the doctors were saying - surgery was the way to go. I have read about families where every single sister ended up with bc and some with fatal bc. Yes, people still die from breast cancer. I read about people that in retrospect wished they had preventative surgery. I know someone whose sister is brca+ and 10 years after her lumpectomy got it again in the same breast. So I let all this information fester and I put away the cancer books and articles. I was so sick of reading about it and really tired of having all things point to surgery. Why doesn't anyone write about surveillance and being in that 15% of people that turn out okey-dokey?

After about two months, I started reading about cancer again. I needed to know about my colon polyps and why I had them. My gc doesn't think they are related to my brca. That is usually associated with brca1, not brca2. And according to everything I read, my uncle's colon cancer shouldn't have been a big concern of mine since he is what they call a second-degree relative. So the medical guidelines all say that I didn't need a colonoscopy until I was 50. Lucky for me my pcp and gi felt differently. But I am still in the dark as to why I got mine. Makes me a little uneasy but at the same time colon cancer is preventable as long as I keep going back for more colonoscopys. I've started reading more books written by cancer survivors and their ordeals. Not just bc but all types of cancer. I am now in the place where I think things aren't so bad after all and appreciate all the stuff I don't have to go through like aggressive, invasive life threatening cancer and chemo and awful drugs with awful side effects. I don't feel as sorry for myself anymore and although I still have the slice and gut ahead of me, my life feels like it is getting back to normal. Just today, I was trying to remember the name of my gs! That feels real good:) Knowledge is power.

heading to the yeah area!!!!

So excited right now:) DW's folks just got us tickets to oakland for new year's weekend!!! Can't wait to see everyone. Really, I can't express how much we want to see everyone. I think we were there last Thanksgiving but it sure feels like a lot longer. Can't wait to chill with the in-laws and battle it out on rockstar! I am awesomely bad on the drums but apparently above average, right little sis?! Can't wait to see all our friends and the babies we haven't met yet!

So if you are reading this, hope you will be in town, and pass the word on. Flying in on the 31st in the am and leaving early evening on the 3rd. So is anyone having a party?? We have a lot to celebrate: dw's birthday (even closer to almost 40), the end of this year, and our anniversary. It's the anniversary of our first date. That's the day we celebrate since we can't get married. We did try once, back in 04 when mayor newsom went mad and started marrying the gays at city hall but our appointment got canceled on account of it was against the law.

Oh yeah, heard you all got some snow!!! That is amazing and wish I could have been there for that! We got some here too but would be cool to see the bay area in the white stuff! How bizarre.

       

follow the leader

I went snowboarding last Wednesday! First official time this season. Only a couple of chairs were open and there wasn't any powder but the sun was shining and if it were the east coast, we would be calling it perfect conditions! Packed powder, sunshine, no lift lines and $15 tickets (plus a ten dollar clothing donation to the homeless shelter). Doesn't get much better than that. I did fall a couple times and that felt like the east coast for sure - ouch! Much more fun to fall in a pillow of powder. Speaking of falling, the terrain park was open and I was very tempted to give the rails a try for the first time. I did go in there but chickened out and slid right by. I was determined to try one before the end of the day but there were too many gangs of boarders hanging out by then so I'll live to try another day. Funny how a little rail scares me now. When I was a brand new boarder I was jumping off cornices. Maybe a little above my ability but I was just following a friend and if she could do it, so could I. It's so much easier to follow the leader than to be the leader. You see them make the jump, maybe they fall but they get back up again. It gives me the confidence and the courage to give it a try.

I am fortunate for the brca sisterhood. I know exactly what to expect, heading into my surgery, from what I should pack for the hospital, what to expect in terms of recovery and even advice and tips on easing back into the world of sex. I am glad I have people to follow. They survived and are happy and that gives me confidence. I feel like a little sister for the first time in my life and it feels great. I was never a follower as a kid but now I gladly reach for that hand to lead me through this journey. I anxiously await my twin's ooph next week. I need to hear her tell me that all is ok and that if she can do it, I can do it. Oddly enough, while I am being a follower I also become a leader for the next batch of brca sisters - the newbies. And while I am waiting for my sister to survive her ooph, she is waiting for me to survive my pbm in february. She wants to see me come out ok and tell her that if I can do it, so can she. I look forward to being done, being on the other side, giving someone else advice and strength and the ability to find their inner courage.

As I've mentioned before, I have a great team of docs and counselors, etc that give so much of themselves to the cancer community. I'd like to start volunteering and give back but they like the survivors to wait a year after their treatment is over. I guess we are not mentally or physically stable enough to help? But I have been able to participate in a couple of studies so far. I did a big, ten year study for diabetes that involved my tissue, blood, a lot of travel and taking meds but the two cancer studies I'm in now are simple and just involve a tiny bit of time and filling out some paperwork.

Here is a little info about Dr Steven Narod's study (with a goal of finding better prevention and treatment of brca+).

This study is officially called the Risk Factor Analysis of Hereditary Breast and Ovarian Cancer and it was started in 1995 and now has about 9,500 female participants from across the United States, Canada, Europe, Central and South America, and Asia. Even though many women continue to enroll in the study every year, we would like you to help us spread the word about this study because having a bigger study population will lead to more accurate results and a better understanding of the prevention and treatment options for BRCA mutation carriers.

So please help us expand our research and consider joining Dr. Narod's study, to be eligible you need to be a female BRCA mutation carrier, be at least 25 years of age, regardless of whether you have had cancer or not, you qualify. To join the study, all you need to do is fill out a survey that asks questions about your health and lifestyle. The questionnaire takes about 20 minutes to complete, and you are only asked to do it every two years.  Email narodstudy@wchospital.ca if you are interested or want more info.

The second study is for a college student who is interested in the mental aspects of surviving cancer. She is looking for bc survivors who underwent treatment within the last 4 years.
I am currently a graduate student at California School of Professional Psychology working on my PhD in clinical psychology. My passion is to work with women who are breast cancer survivors and improve quality of life during/after treatment. I am conducting my dissertation research study in the area of breast cancer survivors and predictors of depression. I believe that the mind and body should be treated simultaneously and more research is needed in this area.

I am seeking women breast cancer survivors between the ages of 18 and 80 to participate in my study investigating predictors of depression. Eligibility includes completion of initial breast cancer treatment within the last 4 years.

If you are interested in participating or would like more information please contact me at:

Emily Meier

eameier.research@gmail.com

I am located in San Diego, CA, however, it is possible for participation outside of San Diego.

I think it is important that we don't forget survivors in the fight against breast cancer! More research is needed to understand what difficulties breast cancer survivors may experience after diagnosis and treatment.

12 reasons to smile

I am doing really well. After one bad week (with the root canal and colon polyps) I have been pleasantly surprised that my mood has bounced back quickly and I am feeling great. All in all, since I have set the date for my pbm, the good days have out numbered the bad days. I think part of that is I just don't need to think about it much anymore now that it is in motion. I am also trying to concentrate on enjoying the time I have left with 'my girls' rather than focusing on my fear and grief over losing them. But part of it is just my personality. I don't mind change, as long as it is on my terms! It can take me some time to accept and absorb new things but once you give me a little room I can usually handle it. It  does makes me a little uneasy looking over to the left and seeing the tickers counting down the days. My sis will be having her surgery next week! Wow. But I know she will do great and that will give me some courage for my own. The time will be here before I know it so I guess I should get motivated and write out a list of things I'd like to get done before February. And I'll need to include at least one more fun trip on that list instead of just cleaning and crap like that!

Still flying high from our time at Arches. While in moab, we stopped at a couple of shops and picked up a calendar from one of our new favorite artists, Serena Supplee. I stumbled upon her art last spring at a cute bookstore in moab, Back of Beyond Books. We always like to find time for the bookstores cuz dw is a librarian after all! And while she peruses the books, I am always looking at the postcards and picture books. I can't stay away from the books full of the nature pics or pics of cities and countries I'd like to see. So I stumbled upon some beautiful note cards from Serena and had to get a few of course:) It was too hard to pick just one. She also had an amazing book there of the grand canyon, Inner Gorge Metaphors, which one day will sit on our (imaginary) coffee table. Her art is mostly watercolors and oils of the landscapes of the colorado plateau. Now when it comes to art, I usually go for the photography stuff. I like the crispness and the realism. But Supplee's paintings really capture my attention. Sometimes a place is so beautiful that a photo can't really do it justice. It's just too one dimensional or something. Don't ask me, I'm not an artsy person! I just know I'm a visual person and I really like looking at pictures. So when I look at Supplee's art it makes me happy. It invokes feeling. Maybe I've been to the place in the painting and it takes me back there. Or maybe I haven't been there and it makes me want to go. Either way, I have this awesome calendar now, and although it will be marked up with all kinds of tod appointments I get to look at all the beautiful paintings and smile.

With Supplee's permission, I have included some pictures I took of some of the pages from her calendar. I think it is fitting that February's is called 'pink percussion.' We all get the pink connection to breast cancer! But the water is significant as well. I love water and even though I am not a strong swimmer I do love to boogie board and have tried surfing a couple of times too. And I am a cancer (zodiac, people) and love to just sit and stare at the water. And my surgeon, the one who will give me my new boobs, likes to call herself a mermaid and will no doubt put in some early morning laps and smell like chlorine during my surgery.