Tuesday, March 30, 2010

You Don't Own Me Anymore, Myriad!

I know I've been blogging a lot recently, but there's been a lot of BRCA news to report on. Last night, a story equivalent to the Pitt-Aniston divorce rocked the genetics world, and I'd be remiss not to mention it today...

When I was tested for the BRCA mutation, and my results came back positive, I was not able to get a second opinion. That's because, in the U.S., only one company offers the test: Myriad Genetics, based in Salt Lake City. Myriad has patented the BRCA1 and BRCA2 genes, and these patents gave Myriad a monopoly on testing for deleterious mutations in these genes. In the absence of competition, the company charged $3000 for screening tests -- a expense that put this test far outside the reach of many men and women who could have benefited from the results.

But all that changed yesterday.

A federal court nullified Myriad's patents. Last May, the American Civil Liberties Union and the Public Patent Foundation filed suit against Myriad, charging their patent on the BRCA genes was unconstitutional. (I wrote about the lawsuit back in May 2009.) And yesterday, a federal judge agreed. The whole 152-page ruling can be found here, and here are links to analysis of the decision written by people with a more complete understanding of patent law, intellectual property, biology, and genomics than I have:

New York Times: Judge Invalidates Human Gene Patent

Wired: Judge Nullifies Gene Patents

NPR: Federal Judge Rules Against Patents On Human Genes

Newsweek: In Surprise Ruling, Court Declares Two Gene Patents Invalid

Los Angeles Times: Breast cancer genes can't be patented, federal court rules

I say this is the equivalent of an unexpected high-profile celebrity divorce in the BRCA world because this ruling -- if it stands, and it looks like it will be appealed -- will CHANGE EVERYTHING about the way men and women learn about their BRCA status. It is likely that the test will now become more widely available, which will drive the cost down. Which is, of course, a wonderful thing. But I wonder about the other not-so-beneficial consequences (and please don't accuse me of suffering from Stockholm Syndrome, in which I grow attached and sympathetic to my kidnapper). Will the quality of testing go down? And will the test be made available to people who don't need it? Myriad has already begun airing direct-to-consumer advertising in the selected regions; the spots use that tried-and-true formula common to many pharmaceutical ads -- "Ask your doctor if you are at risk for high blood pressure and see if Lipitor is right for you" -- and turn it on its head -- "Be ready against cancer." The problem is that this kind of advertising discourages genetic counseling, since the blood draw can be handled by your primary care physician. But genetic counseling is ESSENTIAL to anyone seeking to understand their genetic predisposition to disease; a Myriad-sponsored pep talk by your PCP will not prepare you for the impact of a positive result.

(In fact, true story: when I originally learned there was a genetic mutation in my family, I went to my PCP to discuss how to proceed. She basically brushed me off, said she didn't know much about it except that it was exceedingly rare, and that I shouldn't worry too much about it. Fast forward to December 2009. I'm in her office for presurgery testing. She tells me she thinks I'm brave and that I'm the only person in her practice to be a BRCA mutation carrier. But what do I spy on the shelf behand me as she swabs my nostrils for the MSRA screening? A stack of testing kits from Myriad. This woman who knew nothing about the BRCA gene is now offering to test for it. I shudder to think the damage receiving positive results from someone like her would inflict on a women at such a vulnerable moment.)

But perhaps I'm conflating two different problems. Perhaps quashing the Myriad monopoly will cause direct-to-consumer marketing to cease. And I'm certainly not saying Myriad should be able to patent our genes. I applaud the ruling. It's really an incredible breakthrough. But I'm not completely clear on what effect -- though I know it will be cataclysmic -- the judgment will have on the way Americans receive their genetic test results. And, of course, this case will change the way all genes -- not just those associated with breast and ovarian cancer -- are patented (and about 20% of genes have been patented). So this case is incredibly important. And it's definitely a step in the right direction. Hopefully this will open avenues for further research on the gene and spur advancement in treatment and prevention of hereditary cancers. I just hope we get all of the good without any of the bad.

Monday, March 29, 2010

Extra! Extra! Studies Suggest Surgery Not Always the Best Option, Young Boobless Woman Thinks She May Need to Lay Off the Studies

In my last post, in which I discussed new studies that show surveillance and surgery yield pretty much the same survival rates, I wrote, in reference to a trend piece in the NYT which reported more (non-BRCA) women are choosing bilateral mastectomies: "the benefits of bilateral mastectomy for us mutants are well documented." Well, a new study that's attracting a fair amount of attention this week suggests otherwise.

The headline over at MSNBC reads: "Losing breast little help after cancer." The article goes on to say:

Researchers said that in women with breast cancer who also have genetic mutations that make them more susceptible to the disease, women appear to live just as long whether they choose treatment that preserves their breast or have a breast removal, or mastectomy.


Dr. Lori Pierce, a professor of radiation oncology at the University of Michigan, and her colleagues observed 655 breast cancer patients in Australia, Israel, Spain and the United States, all of whom had genetic mutations that gave them a much higher chance of getting the disease. After 15 years, women who had a breast removed had about a 6 percent chance of a cancer relapse, compared with 24 percent of women who kept their breasts. If the latter group added chemotherapy, their risk dropped to about 12 percent.

But when it came to survival, there was almost no difference whether the cancer patients had decided to keep their breast or have it removed. Women who kept their breasts had a survival rate of 87 percent after 15 years, and women who had mastectomies had a survival rate of 89 percent.

The implication is that, even if 1 in 4 women who chose to conserve their breast (or 1 in 8 who chose chemo) experience a relapse, they don't die of it. So, all things considered, even in us mutants, a lumpectomy and chemo is as effective as mastectomy. Surgery, the research suggests, isn't always the best option.

This study arrives at an interesting moment. There has been fascinating discussion on several of the BRCA blogs I follow about our previvor community and its seemingly pro-surgery/anti-surveillance tilt. As the blogger who writes "The Secret Life of a BRCA1 Mutant" commented on my last post: "I really feel like the general public says that surgery is crazy, and the BRCA community says that surveillance is crazy, which puts women in a situation to be criticized whatever they do." And Dee, with her admirable wit and cynicism, wrote on her blog: "I firmly believe, and I will go on believing, that it isn't "crazy" or "irrational" to reject prophylactic surgery in favor of screening....[O]n a philosophical level, I don't want to get to a place where we, as a community of mutant previvors, as it were, accept prophylactic surgery as the "solution" to the BRCA conundrum. " (And this is coming from a woman who's a veteran of the ol' boob chop chop and the nether ladypart removal.) Today, Teri even pondered her pro-surgery stance in a thoughtful blog post: "It may seem to the casual observer that I’m pro-surgery, since I have had a preventative hysterectomy & oopherectomy and a preventative double mastectomy, since learning of my high ovarian and breast cancer risk. Does that make me anti-surveillance? In a way, yes, it does, FOR ME, for my own circumstances – based on my age, my viewpoints, where I stand in life, things I’ve learned about BRCA related cancer and my tendencies to over-think, over-analyze and worry constantly. Do I think increased surveillance is a viable option for other BRCA mutants? Yes I do."

All of this chatter in the blogosphere and the critical mass of studies has me wondering about my own position. Am I pro-surgery? I suppose, by nature of the fact that I've had it, I am. Am I anti-surveillance? Absolutely not. In fact, I admire women who are brave enough to go that route. Surveillance, in many ways, simply wasn't an option for me. I suffer from an anxiety disorder, and I couldn't subject myself a lifetime of quarterly testing and waiting and the crushing fear and panic that attend it. I think surveillance is a fantastic option for the right kind of person. I'm just not the right person.

Which leads me to why I started this blog. When I first learned there was a BRCA mutation in my family and my cousin, 26 at the time, had tested positive for it and was pursuing mastectomies, I thought she was nuts. Cut off your healthy breasts? You've got to be kidding me! Disfigure your body? No thank you! It turns out, six months later, I'd be in a position to make a similar choice. And when it came time to decide what to do -- when it was my body and my future -- her choice didn't seem so radical after all; in fact, it made a lot of sense. But when I began to consider surgery, my cousin M was the only person I knew going down that road. I didn't realize there were support organizations. I didn't know there'd been books written. I felt pretty alone. But I also knew I could be an example. So I started writing here, and I chose to write about surgery because that was my choice, and I hoped my journey and experience could bring solace to others in my position. I've been honest all the way through: I've written about my ambivalence, my fear, my lows, and my highs. But my journey is whole (though still not complete ... I still have a few more years with my overalls before they get the yank) and this blog represents my experience with testing, getting my results, dabbling in surveillance, choosing surgery, having surgery, recovering from surgery, and thriving after surgery. So is this a pro-surgery blog? No. This blog is my story, and I chose surgery. But if I'm not pro-surgery, I'm simply anti-being scared of it. I'd like not to encourage surgery so much as assure you that if that's the road you chose, it's not as bad as you think. If I'm the worst case scenario (a fake-boobed 31 year old), I'm doing OK. And I think that's something that needs to be said. Yes our choices are shitty. Yes surgery is serious. But, if you choose surgery, it doesn't have to be a dark moment; it can be a positive experience.

Surgery isn't the only answer, and research is making the compelling case that there are other equally "good" options (good is in quotation marks because we're talking cancer and treatment here, so none of this is actually good). Sure, some of these studies make me pause and wonder if I've made the right choice. But that's part of the journey, too. Just because I have pretty round fake boobs doesn't mean I wouldn't rather have my old ones back. And I'll probably always miss them and wish there was some way for me to have kept them. But, for me, there wasn't an option. And so I write what I know -- and I hope I don't put any one off who's considering surveillance. I just write the blog I wish I could have read when I first embarked on this expedition into terra incognita. My greatest hope is that my experience can be someone else's map.

Thursday, March 25, 2010

Beyond Survival

On Monday night, I spoke on a panel at an event for women at high risk for breast and ovarian cancer. During the discussion that followed, a certified genetic counselor made a startling claim: she said survival rates for women with BRCA mutations are pretty much the same (in the 90-95% range) whether you chose surgery or surveillance. Upon hearing this, my first thought was to slap my forehead and reprimand myself for making such a stupid stupid stupid choice to remove my breasts. But then I though about it a second and realized I'd still made the right decision. Why? Because survival rates are very different than not-getting-cancer rates. And that's a key difference. I've noticed this fundamental disconnect in a lot of studies and discussion recently, and I think it's worth looking at closer.

First, about that claim. This was the study she was getting her data from. The salient findings are this:

For those BRCA1+
- With no intervention, survival probability by age 70 is 53%
- The most effective single intervention for BRCA1 mutation carriers is prophylactic oopherectomy at age 40, yielding a 15% absolute survival gain
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 24% survival gain

For those BRCA2+
- With no intervention, survival probability by age 70 is 71%
- The most effective single intervention is prophylactic mastectomy, yielding a 7% survival gain if performed at age 40 years.
- The combination of prophylactic mastectomy and prophylactic oopherectomy at age 40 improves survival more than any single intervention, yielding 11% survival gain

For both
- Prophylactic mastectomy at age 25 instead of age 40 offers minimal incremental benefit (1% to 2%)
- Substituting screening for prophylactic mastectomy yields a similarly minimal decrement in survival (2% to 3%)

Their conclusion was this: "Although prophylactic mastectomy at age 25 plus prophylactic oopherectomy at age 40 years maximizes survival probability, substituting mammography plus MRI screening for PM seems to offer comparable survival."

So that's where she's getting this idea that survival rates are similar. But in order for that to be true, women still need to have an oopherectomy at age 40. So, it's misleading to say no surgery is required because in order to have at least a 90% chance of making it to 70, your ovaries have got to go.

But, if it is true that you can survive until 70 even if you keep your breasts, why am I still sure I've made the right choice (at least for myself)? Because, again, the study doesn't consider the likelihood of getting cancer -- just our likelihood of surviving it. Which is a big difference. Most of the time, having cancer means time-consuming, treacherous treatment. (Recently, however, I've met two young BRCA+ mutation carriers who were diagnosed with DCIS -- essentially stage 0 breast cancer -- through close surveillance, and they did not require chemotherapy. They both, however, chose double mastectomies after their cancer diagnosis. These are cases of close surveillance working; there are many other stories I've heard about women whose cancers were missed, despite assiduous screening.) In most cases, cancer disrupts your life and can have profound effects on career, relationships, and self image. And that's what bothers me about these cold, statistical models (the study I've been discussing is a decision analysis study rather than one based on empiric data): it doesn't take into account issues like quality of life. Sure, from a purely mathematical perspective, I have as much likelihood as someone diagnosed with early stage breast cancer as making it to 70, but will our quality of lives be similar? It's an important question, especially given that the event I spoke at (and where this information was discussed) was called "Survive and Thrive." It's not just about evading death. It's about enjoying life. And I know I'll enjoy mine a lot more knowing that I won't have to face breast cancer.

This issue came up in a different way over on the Well blog of the New York Times. Tara Parker-Pope recently wrote about the trend among women diagnosed with breast cancer to remove both breasts, despite the fact that "cutting off a healthy breast does not improve the odds of survival." (Those are TPP's words, and I'm leaving them as such, because certain people complained that the phrase "cutting off a healthy breast" was misleading, conveying a draconian technique that in no way resembles modern mastectomy and reconstruction. I don't have a problem with the phrase; I write all the time here about chopping and cutting and hacking and everything else.) She writes:

The percentage of women asking to remove both breasts after a cancer diagnosis has more than doubled in recent years. Over all, about 6 percent of women undergoing surgery for breast cancer in 2006 opted for the procedure, formally known as contralateral prophylactic mastectomy. Among women in their 40s who underwent breast cancer surgery, one in 10 opted to have both breasts removed, according to a University of Minnesota study presented last week in St. Louis at the annual meeting of the Society of Surgical Oncology.

So, if it doesn't add any benefit, why are women removing healthy breasts? (It should be noted here that the women discussed in this article are assumed to be non-mutation carriers; benefits of bilateral mastectomy for us mutants are well documented.) Do these women just want to drive up premiums for the rest of us (which was suggested, naturally, by the very sensitive comment trolls that crawl out from under their bridges to make unsubstantiated claims and accusations)? Are they crazy? No. They just don't want to worry about breast cancer. They don't care that it may not improve long term survival rates because they know it definitely does improve long term peace of mind.

And this is something I can relate to. These women felt betrayed by their breasts and opted to remove them altogether; when they got cancer in one breast, both were, pardon the pun, dead to them. And I felt the same way. When I learned I carried the mutation, my breasts ceased being decorative sex organs and became time bombs. I knew I'd rather remove them before I got cancer rather than wait around to remove them after. And I don't think you can quantify that. I feel my quality of life has improved dramatically even since my mastectomy. (I wrote about being happy here.) When I first learned I was a mutation carrier, I heard a medical profession describe BRCA previvors as the equivalent of cancer survivors in remission: both groups of women spend their lives in fear of the cancer either returning or finally catching up to them in the first place. That stuck with me, and it confirmed that surgery was the right choice because I no longer have to crouch in perpetual horror, waiting for their other metaphorical shoe to drop. I'm not sure you can convey that in a statistic. That's why our personal stories and our choices are so important to share.

Wednesday, March 17, 2010


On the way into the office this morning, I saw tulip blossoms (pictured above) poking through the dark ground and I almost cried -- it was just so beautiful. Spring! New life! Rebirth! And it's an apt metaphor for what I've been feeling lately: contentedness, optimism, peace.

Tomorrow marks the one-year anniversary of this blog, and it's dizzying to consider all the changes that have happened in the last twelve months. When I started writing here, I was terrified; I hadn't even tested positive for the gene mutation yet, but I was so scared and so alone that I needed to create a forum in which I could express myself. A year later, while I still love writing here (and reading your comments, which I'm a little sad to see have petered off recently. I miss you guys! Say hi to me!), I'm in a totally different emotional state: I'm happy, sometimes deliriously so.

If spring is a rebirth, the winter -- and its gray weather and leafless trees -- is a kind of death. If I'm now reborn, it follows that I was a little unanimated before. And I realize with the benefit of hindsight, that, if I wasn't quite dead before my surgery, I was deadened: my joy was tempered, my optimism was muffled, my anxiety piloted me. And now, after surgery, I'm alive, more so than I've been in a long time.

The last time I wrote about my post-mastectomy emotions, I talked about my post-surgery blues. But equally important, and to my mind more astonishing, is the phase I find myself in now: unadulterated glee. I was down for only about the first two weeks after surgery; once my drains came out and my house guests left, I began to feel more like myself and less like a patient. But the real return -- or perhaps the ascent -- to happiness began shortly after I returned to work. The most mundane things -- the way the sun shone through the window of the southbound el train as I headed to the office, the simple pleasure of doing my makeup and blow drying my hair, bundling up and braving the Chicago cold -- suddenly seemed new and beautiful; the normalcy of a simple life no longer clouded by the fear of cancer was blindingly bright. And it wasn't just being back at work where I felt different; at home, my laptop lay clamped shut rather than propped open, forever searching the internet for information about breast cancer. I began baking and cooking -- domestic activities I was never known for -- and found immense joy in creating and nourishing. I found myself with so much free brain space: the part of my mind that was clogged with fear and worry had been cleared, and now it is filled with a sense of empowerment. And this feeling of accomplishment has turned into happiness.

After surgery, I feel I can do anything. I can take on any challenge. I can climb mountains. My BRCA year was life-altering and life-sucking, and now that I have recaptured the elan, there is nothing that is too hard. Which leads me to my next point. Before BRCA, the initials that ruled my life were OCD: I presented with symptoms during puberty and have struggled my whole adult life to control the intrusive thoughts and compulsive behavior. This is real OCD, not just oh-yeah-I-like-my-shoes-lined-up-neat-too kind: every second of every day I struggle with irrational thinking and palliative rituals. It's a hellish disorder, but I decided a long time ago I wouldn't be held prisoner by it. And it's a testament that many of my friends and acquaintances don't know this secret shame: I work really hard to control my behavior so that I'm not stigmatized as that nutjob girl.

But I've also spent most of my adult life medicated. I long considered OCD a chronic condition that, like, say, diabetes, required constant medication; my SSRI was like insulin. I had been wanting for a while to switch up medications; the pill I took was notorious for being particularly side-effect laden and difficult to wean from. But in my BRCA year, with so many changes afoot, I thought it would be prudent to wait. But after surgery, I felt strong enough to try something new; after all, I felt I'd be given a new lease on life and I had a check-list full of things I was anxious to start working on. So in February, I spoke to my doctor about trying something new; she devised a plan by which I would gradually taper off the old drug and get onto the new one. But something happened halfway through the weaning: I realized I wanted to make a go of it without medicine. I had heard such nightmarish stories about the withdraw symptoms that I worried whether I'd be strong enough to get through it. But I discovered, not only was it not as bad as I thought it would be, I didn't feel all that different. So when I got to the end of my weaning period, I stopped. No more pills. And it's been wonderful. I don't feel all that different, to be honest. Sure, I still have symptoms of OCD, but no more than I did when I was supposedly controlling them with medication. It's been about a month, and I feel great: I can access my emotions -- both sadness and happiness -- more readily and I feel things more acutely, but this is what I want: no buffer, just life. It's like my mind has been reborn, or at least reawakened.

I'm a big believer of better living through chemistry, and I think medication can do a lot for a lot of people. And I'm not writing off the possibility that one day I might once again set sail on the S.S. SSRI. But right now, I'm seeing what life is like through these eyes. And so far, everything I see is beautiful. It's spring and I have new boobs and a clear mind: I'm reborn and I'm happy.

Friday, March 12, 2010

Recovery on Water

My friend Cancer Bitch suggested last year that I join a group called Recovery on Water, a rowing team for cancer survivors. I was intrigued (having grown up on the bougie I-95 corridor, crew was very big, though I was too busy playing equally bougie sports like filed hockey and lacrosse to ever learn to row), but at the time she suggested this, all I could think about was my upcoming surgery, and I promptly put it out of my mind. Persistent bitch she is, she invited me recently to attend the group's open house, which I did on Sunday.

I was a bit skeptical, I must admit, not the least because ROW is a group for cancer survivors, which is most certainly something I'm not. Would I feel like an impostor? A wolf in sheep's clothing? Does my trauma -- my voluntary removal of my breasts -- qualify me to join this group of women who've collectively beaten cancer? Will they be mad at me I got the chance not to get cancer? Will I know the secret handshake? (This is hardly the first time I've considered my identity as a previvor and wondered if I'm somehow less than a survivor. You can read more about my concerns here and here.) Turns out I'm not the first previvor on the team (B, who also works at UofC, and I met last summer and are going to carpool to practice on Thursdays), but I'm definitely the exception rather than the rule.

Despite my concerns, I felt I belonged. Here was a group of women brought together by cancer. And whether we had it or only had the extreme likelihood of getting it, we're bonded by this disease. Sure, I never had breast cancer, but it still changed my life. I met some amazing women: a young mother in her early forties whose breast cancer has metastasized to her lungs, a twenty-something who is battling uterine cancer (likely caused by Tamoxifen, the chemoprevention drug she was prescribed after her first bout with breast cancer), an older woman wearing a lymphedema sleeve. And though I felt a little unworthy in their presence -- after all, they had been through so much and all I did was have my breasts removed -- I still felt bonded to them; their fate could have been my fate. I can't castigate myself for not having had the experience of cancer; I had the experience of not having cancer, and that's not necessarily nothing.

I was also dubious about physical act of rowing. After all, how do you get a bunch of ladies who've had their chests biopsied, radiated, operated upon, and/or reconstructed to propel a boat? Next week will mark three months since my surgery, and my first thought, defeatist though it might be, was "I can't do that! My new boobs! My fragile, fragile new boobs! Won't someone please think of my boobs!" But that's exactly where the empowerment comes from. This isn't your average let's talk about your feelings cancer support group -- there are no gently titled heads, pursed lips of concern and empathy, hands on neighbor's knees. We row even if -- and maybe because -- we think we can't. We've had our bodies betray us, and rowing helps us take the power back. Plus, once I saw women three decades my senior on the ergometers, I knew I had to try.

We had a rowing machine in our house growing up (right next to the Nordic Trek that became a clothes rack and the treadmill I was the only person to ever use), and it turns out I had been doing it wrong all these years. There's a movement to it -- a lean back, a lean forward, a knee bend, and push -- that I'd been doing in the wrong order. But nevertheless, when I stepped onto the machine, I discovered most of the power comes from your legs, not from your chest or arms. And after a minute or two, I forgot about my fragile fake boobs. I had so much fun and felt so welcomed, I knew this was something I wanted to try.

Last night, I attended my first practice. The group meets in raw space (it's not pretty -- it looks more like a building that's about to be rehabbed than an abandoned warehouse, but it's covered in dust and filled with construction materials) in the West Loop; it's jarring to see two dozen ergometers, several Nautilus machines, and racks of free weights in this otherwise unfinished building. It looks like health fanatics are squatting there. (In actuality, the space belongs to the crew team of a local high school who allows ROW to use it for free, and since free is the key word, no complaints here.) I left sweaty and covered in construction dust. (Note to self: bring a towel next time).

I also got my ass handed to me by women much older than me. I confess I thought, even after the open house (during which women sort of casually floated back and forth on the ergometers, and the whoosh of the fan was only quiet background noise), that this would be gentle; after all, we're former cancer patients, right? Wrong. It was hard core. This did not look like a group of women who'd been to hell and back. I even forgot for a moment that we were all here because of cancer until I looked over during our ab circuit and saw the concave chest of the woman lying next to me. I made it through the workout but was humbled to recognize I'm going to have to practice and commit to this if I want to be as good as some of the ladies who've been way sicker than me. And I'm up for the challenge. It's a great workout. Today I feel tight but not sore, and my abs, which have lain dormant for lo these many months, tingle as if to remind me, we're still here.

But the real appeal is still, of course, the women. I rowed next to Cancer Bitch, and between pulls, we gossiped about publishing (I'm a book publicist and she's a writer, so we know a lot of the same people), cancer memoirs (she wrote one, I'm working on something in the same vein but a little different here), and other scholarly topics. After practice I introduced myself to a young women whose rowing technique I admired. She asked if my short curly 'do was my "chemo hair" (when her hair grew back after treatment, it came back curly) and I explained that I hadn't been through chemo but had just recovered from a preventative mastectomy, and she seemed to accept and admire my choice. I told her I wanted to learn more about rowing from her, but I also want to get to know her story, her struggle, her triumph. There is so much I can learn from these women, and I hope they can learn from me, too.

In the afterglow today, all I can think is of the silver linings. I'm coming up on my one-year anniversary of learning my BRCA status, and I'm a different person, physically and emotionally. I'm also truly lucky to have met so many wonderful new friends and been exposed to so many new opportunities and adventures. When I began this journey, I thought I was all alone, and now, literally, I'm part of a team. Never thought I'd take up rowing, but I've done lots of things in these last twelve months I never thought I'd do, and this seems like one of the better options I've been given. Give up your tits, join a team. Sign me up. I'm hooked already.

Wednesday, March 10, 2010

If I Only Knew Then What I Know Now

If I do say so myself, I have a knack for proposing -- and then fulfilling -- new year's resolutions. Several years ago, I resolved to accessorize better, and today I'm proud that I'm known for my eclectic jewelry, scarves, and shoes. This year, coming off the high of surgery (and drugs), I made three resolutions. First, I resolved to wear lipstick. Result: I now wear lipstick. Second, I resolved to prepare dinner for and eat with my husband at my dining room table in my dining room at least two nights a week. This is now one of our favorite new traditions (and I've discovered, after years of misplaced feminist pride, that I'm actually quite capable in the kitchen; moreover, I enjoy it).

The third resolution was a bit trickier: eat more Ethiopian food. Now, some background. My freshman year of college, I met a woman who would become one of my most cherished friends, and our deep bond was formed over platters of watt and injera at a little hole in the wall restaurant in Lakeview. But we didn't go there for the food. We were 18, and they didn't card us. So we would sit for HOURS, smoking cigarettes until the ashtray overflowed, drinking carafes of their house red. These marathon wine drinking sessions led inevitably to complete inebriation, and frequently, illness. I got sick so many times that I learned to (mis)associate Ethiopian food with vomit, and after college, I swore it off entirely. But now that G an I have purchased a condo on a street celebrated for its Ethiopian restaurants, I knew I needed to relearn to eat the cuisine.

Last Friday, I satisfied resolution number three: I ate Ethiopian food and LOVED it (it's amazing how much better food tastes a) when you haven't smoked a pack of cigarettes while consuming it, and b) when it doesn't hit a belly full of cheap table wine). But I didn't accomplish this task on my own, oh no. I must publicly thank our friends R and her lovely husband D, who did the ordering (I loved everything they picked) and coached and cheered me as I, tentatively, scooped up the watt with the injera and swallowed.

R is having surgery in two weeks. Like any woman facing a mastectomy, she is nervous, but she also seems really ready. R's experience with cancer is much different than mine, and she has lived more than half of her life with the knowledge that she, like her mother (who is now battling another recurrence of ovarian cancer) would one day get breast cancer. But now, she won't have to. And I think that's both thrilling and scary, because, like we discussed at dinner, surgery isn't just about the physical act of cutting and reconstructing body parts; it's about the reshaping of identities, too. R is also the first BRCA friend to have surgery since my recovery and, not that I'm some expert or anything (I'm just a lady with a fake pair of knockers and a blog), I thought I would put together this list; it's half advice/half opinion. But its whole intention is just to make this clear: R, you are going to rock this. I'm so glad we've become friends; thanks for helping me with my new year's resolution.

From One Fake-Boobed Lady to Another Who's About to Be: Some Things I Learned, in no particular order.

1) Hoodies are your best friend.
Fashion be damned, zip-up clothing will be your uniform for the first week (or more) after surgery. I would recommend anything with a zipper over anything with buttons because, even though this sounds silly, buttons are hard when you are on drugs. Hoodies also solve another problem: hair. Chances are, you aren't going to be in any mood to style your hair (it's a victory if you can even reach your arms up to wash it), so just pop the hood and you are cocooned in a protective hipster shell.

2) Drains Suck
I don't have anything more to say about this. And I think you are anticipating their suckage. But this is just to say, when you are frustrated and grossed out and you say out loud, "This sucks!" I hear you, sister.

3) Get Thee One of These

Order this now. It will easily be the best $60 you spend. As a stomach sleeper, I struggled for the first week to find a comfortable position in bed. I required muscle relaxers for the cramps in my neck that were (seriously) more painful than the soreness in my chest. I feared getting into and out of bed because it hurt so much. And then I ordered this thing. The clouds parted, the sun shone, and a seraphim sang. My life changed for the better. Seriously, don't go into surgery without one.

4) It's OK To Be Scared
Even in the last week before surgery, I held my head high and bravely put one foot in front of the other. I thought I was doing a good job managing my anxiety; friends would comment how calm I seemed. But the truth was I was terrified, and I didn't realize how heavy the burden of that fear was until I woke up from surgery and burst into tears. Of relief. But even though we are super women, it's OK to be scared. If we weren't, we'd probably be in denial. Yes, the other side seems so unknown, but as a permanent resident of the over-the-rainbow club, I'm telling you, there's nothing to be scared of over here. (And we're excited for you to join us!)

5) It's OK to Be Sad
I wrote about my post mastectomy blues here, and I was so heartened to read so many messages of support and solidarity in the comments. What I said then I still beleieve now: we spend so much time being bad-asses (warriors in the face of cancer, fearless ladies who will give up their breasts to gain more control of their health) that when we want to cry, we look over our shoulder to make sure no one's watching. But go ahead and cry. It's sad what we have to do. And if anyone sees your tears, I bet they'll understand.

6) I Endorse This Bra

They sell them at Nordstrom and, while they aren't exactly giving them away, they are a great investment. I still wear mine nearly 24/7. (Another hint, buy them in a couple of sizes because it's hard to know what size you'll be after surgery. Return the ones that don't fit. And keep in mind you'll be swollen for a while, so the bra will fit differently over time.)

7) Your Recovery Will Be Your Own
Part of the benefit of being a member of the BRCA sisterhood is that you have lots of ladies to compare notes with. The downside is that, just as no two women are alike, no two surgeries or recoveries are the same. If you have your drains in longer or stop taking drugs sooner, that's great -- because that's what you need. Some women are instructed to wear a bra immediately after surgery, some aren't allowed to put one on for a few days. Just follow your doctor's advice. And don't worry to much about, say, what you should be feeling like on day five. You feel like on day five what you feel like on day five. Doesn't matter what I or anyone else felt like. You are you. And your recovery will be yours.

8) Don't Be Afraid to Call Your Doctor
A few days after I got home from the hospital, my drain site on my right breast was really irritated. It itched. It was red. I was afraid it was infected. But I noticed all this very late at night (you tend to keep odd hours after surgery) and thought it would be rude to call my doctor. So I hemmed and hawed and paced and equivocated and then finally picked up the phone. The doctor didn't seem upset (as well he shouldn't because he's the medical professional and I'm the patient) and told me what to do. The moral of the story: that's what they're there for. If you have a question, call. It's not like this is something we go through every day. And sure, there are odd things that our new boobs will do while they are healing that are perfectly normal. But we can't know that. So don't be afraid to ask.

9) Ask for Help
Whether it's climbing into bed or getting a glass of water, for the first few days at least, the stuff we do without thinking twice about will be hard to impossible without assistance. This gets compounded, unfortunately, by the fact that it's difficult to articulate what help you need, especially when you're on pain meds. I remember being so frustrated that when I gave vague instructions like, "Hand me the thing. You know, the thing that's used for that thing. The thing that's in the cabinet above the thing. Why are you being so annoying? I'm making myself perfectly clear!" I did not get the desired outcome as quickly as I wanted and often tried to do it on my own. The lesson here: know it will be hard to explain yourself, but be patient with your caretakers, too.

10) Celebrate Your Body Now, But Know There is So Much Yet to Celebrate.
As a fun thing to do with your husband, I recommend casting your breasts. Reappropriate one of these belly casting kits and go to town. It's messy (and not necessarily sexy, like Ghost-pottery-wheel messy sexy), but it's a fun and inexpensive way to commemorate your body as it is now. But don't think, like I did, that there won't be anything to celebrate after surgery. Truth is, you'll probably look even better (I know I do), so look forward to celebrating your new body, too.

Good luck, my dear R, and all the BRCA ladies out there facing surgery. I know you'll rock it.

Thursday, March 4, 2010

Life Insurance

I meant to blog about being BRCA+ and obtaining life insurance a while ago, but an article that appeared yesterday in the Sydney Morning Herald gives me occasion to remedy this oversight. Although the piece touches on all aspects of genetic testing (and how the results might effect insurance coverage), for our present purposes, it features a BRCA+ woman who struggled to get life insurance after her positive result.

Eventually, [Dianne Fisher] was able to obtain cover but at the cost of a high premium. "I [subsequently] had both my breasts removed and my ovaries removed," Perth-based Fisher says. "But I still had difficulty getting my insurance dropped down to a normal rate, even though I now have no risk whatsoever of getting breast cancer or ovarian cancer."

Now, forgiving for the moment that she is a little misguided about her breast and ovarian cancer risk (even risk-reducing surgeries don't eliminate entirely the possibility of cancer), she has a point: on the one hand, yes, we have a genetic predisposition to developing certain types of cancer, but on the other, that information allows us to make choices about our health to lower our risk below that of the average women. So how should we be classified by insurers? High risk or low risk?

The article was out of Australia, and it illustrates that different countries regard genetic test results differently. In the UK for instance, the article reports, "Insurers abide by a voluntary ban on access to predictive genetic tests that was agreed with the government in 2001. The moratorium applies to policies of up to £500,000 ($858,400) of life insurance." In the US, it reports, "The 2008 Genetic Nondiscrimination Act now states health insurers can't deny coverage or charge higher premiums on the basis of genetic test results." But, of course, GINA does not apply to life insurance, so it's a bit of a mystery how it is factored in in the US. (A spokesman for the American Council of Life Insurers says in the article, "In general, insurers are not quick to embrace new technologies such as genetic testing." Which seems a little absurd to me, but moving on...)

So how does it work on the ground? My experience with life insurance was positive, even after testing positive. In fact, although I recommend getting life insurance BEFORE you get your test results, it is far from impossible to get good coverage at a good rate AFTER your test. To be honest, life insurance was the furthest thing from my mind before I tested; all I was focused on was the result. It wasn't until I learned my status and decided to proceed with prophylactic bilateral mastectomy that I recognized the need to buy a new policy (I have one through work, but it's not very big). At this same time, G and I were in the process of buying our first place, and I realized that we both needed policies, should something happen to either of us, to help with mortgage payments, student loan repayment, etc. All of our insurance policies are through State Farm, and our agent is wonderful, so last summer, G and I went to her office to discuss life insurance. I was completely honest about my genetic test results. She had never encountered such a situation before (just goes to show how rare we really are), but thought that it wouldn't affect my rate at all. I was completely honest about my health history and went through all the requisite physical examinations. And in the end, she was right -- my genetic test results didn't affect my rate at all. I did not, however, qualify for the preferred rate (and instead was covered at the standard rate) not because of BRCA but because of three other little letters that have haunted my life: OCD. I've been treated for the condition since grade school, and apparently, a history of an anxiety disorder is more damning that a genetic prediction of my future cancer risk. (On this note, there have been a spate of fascinating articles and studies published recently debating the efficacy of antidepressants, and a recent essay by Louis Menand in the New Yorker, which asks whether psychiatry can be a science, points out that treatment of mental illness can affect insurance rates for those that might not be sick, only different. I definitely had no idea my history with anxiety could be a black mark on my medical record in this way.)* Incidentally, G wasn't covered at the preferred rate, either, because he takes blood pressure medication (medication I secretly don't think he needs). It just goes to show you that it's always something (in the words of the Roseanne Roseannadanna).

I've now got life insurance, yes, but it likely isn't enough. It's enough for now, of course, but going forward, as G and I start a family, we'll need to revisit the issue. We also bought term policies instead of whole life policies (which accrue cash value), mostly because we felt we couldn't afford the latter right now. But in the future, this is likely something we'll invest in. Also, we didn't necessarily shop around; we went directly to someone we like who represents a company we trust. Maybe next time we'll do more research. But the questions remain: How will my rate be affected now that I've had preventative surgery? How will my rate differ now that I'm off meds (that's the subject of a very happy post that's yet to be written)? I'll let you know when I find out. But for now the message is this: even if you are BRCA+, you can get life insurance. And if anyone wants the number of my agent, I'd be happy to share. She's a doll.

* In researching this post, I also came across a new study that suggests antidepressants may block Tamoxifen. Not that this has anything to do with the topic at hand, but suffice it to say that's another reason why chemoprevention would not have been right for me.