Tuesday, June 30, 2009

The View from the Other Side

On the train Friday afternoon, escaping the walled fortress where I work, a coworker asked if I had any plans for the weekend. I started telling him that I was going to go visit a friend in the hospital who'd just had a PBM that morning and then I was attending a benefit for an organization that supports high-risk women... and then I stopped and said, "God, it's all about boobs this weekend. It's always only all about boobs anymore." (To wit: I found myself in the last few days overusing the phrase, "Not to make everything about my boobs but..." while discussing 1) my job, 2) our house hunt, and 3) where to eat dinner. None of these things have anything to do with my boobs. But yet, suddenly, they do.)

It was a very boobie weekend. A boobie week, indeed. It started with my new BRCA friend S's boob voyage party on Monday night. We dined on fluffy cupcakes with buttermilk nipples, donned pink feather boas, and feted S -- who wore a tiara, a comical floral plastic bikini top, and a remarkably courageous smile. Part of why S and I clicked so instantaneously is that we're both outspoken, proactive women who've decided to make our experiences as previvors public; I'm writing this blog, she's making a documentary. The film crew was there Monday night, and I fear what they captured me doing (picking my nose? picking my butt?) or saying (I'm not known for having much of a filter). Before we left, my other new friend S, who had a mastectomy and reconstruction with the same doctors both S and I are using five weeks ago, showed me her new boobs, which looked fabulous. I was standing in S's mom Z's bedroom, surrounded by a half a dozen women who have had the surgery and reconstruction, and I looked at S and said "You and I are the only ones in this room with our real tits." And she said, "And after this week, you'll be the only one."

And now, I'm the only one. S had surgery on Friday morning. From what I understand, she had some difficulty coming out of anesthesia and spent longer in recovery than normal, but by the time I saw her Saturday afternoon, she was in good spirits, numbed by morphine, and surrounded by friends and family. Visiting S in the hospital was a bit of a reconnaissance mission for me; she was operated on by the same doctors I'll be using at the same facility I've selected, so spending time with her was like peering into my future. I hadn't been in a hospital room in ages (Decades, maybe, even. Since my Grandmother's stroke? Could it have been that long?) and things have changed in the interim: flat screen TVs with Direct TV, updated fixtures, room service that delivers chocolate ice cream. S's private room was cozy -- crowded by bizarre, clunky chairs that fold flat for overnight guests -- and filled with flowers. S is a wisp of a thing, but I was struck by how small she looked in her big hospital bed, like a little girl playing dress up. She was hooked up to seemingly dozens of machines and drips and monitors, wires emerging from her chest, a fanny pack around her waist, from beneath the covers. Nurses flitted in and out, noting levels, taking blood, helping her to the bathroom.

I spent about two hours with S, and though, ostensibly, I was there to comfort her, S actually was the one who put me at ease. Just seeing her alive -- talking, smiling, being -- gave me a visual reference for what comes after surgery: the good part, where, sure you are bandaged and bruised and clicking the morphine pump and a little testy with your mom and greasy around the nose and uncomfortable in your strange pink pajamas, but you are on the other side of the anxiety, the fear, and on your way to recovery and a life without the oppressive fear of developing a deadly disease. Despite all the wires, the IVs, the discomfort, the numbness, I envied S because she was over the hurdle.

I sent flowers to S, and the card I wrote said something about her new "girls." The florist couldn't deliver them on Friday (S was still in recovery and not yet assigned to a room), so a woman called to tell me they'd be delivered on Saturday. She read the card. "Oh, I see. She'll be in maternity." I said, "Uh, no." She said, "The card, it says she's having girls." I laughed. "Oh, yeah, um, not that kind of girls." Pause. Florist: "Ooohh. Those kind of girls. She's doing something to make herself feel better." I wanted to correct to her, to tell the florist it wasn't cosmetic, this wasn't just a superfluous operation to enhance her knockers. I wanted to tell her how brave S is, and how difficult a decision it's been for her (and me and every other woman who finds herself facing impossible choices). But then I thought about what she'd said. She was doing this to make herself feel better, though not in the way the florist meant. After this surgery, she would feel better knowing that her chances of developing breast cancer had plummeted from 90% to less than 5%. So I said, "Yeah, to make herself feel better."

On Sunday, G and I attended a high tea at the Drake given by the organization Bright Pink. We sat at a table sponsored by my plastic surgeon, surrounded by women who'd had their boobs removed and reconstructed by that very skilled man. And everyone was so happy. They wore low cut dresses. They showed off their cleavage. They were on the other side, just like S. One day, someday soon, I will join them. And then maybe everything won't be about my boobs anymore.

Wednesday, June 24, 2009

RIP Dr. Jerri Nielsen

Sometimes, life with BRCA can be seemingly unbearable. I think to myself, incredulously, I have what now? (An almost 90% chance of getting breast cancer) And what again are my options? (Either wait and get it or surgically remove your breasts) And how is this fair? (It's not, but at least I know) These pity parties usually don't do much to assuage my shock that this is happening to me. The only thing, I've found, that makes me less paralyzed in the face of my ordeal is recognizing (and being humbled by) the fact that there are so many worse things I could be affected by. (For those keeping score, Masha Gessen's Blood Matters is a veritable treasure trove of diseases and conditions that make BRCA look like a blessing: the one that haunts me is Maple Syrup Disease. Also, prophylactic removal of the breasts seems downright pedestrian compared to the surgery offered to carriers of the stomach cancer gene. Read the book. It's really eye-opening.)

I was in the middle of having one of my periodic pity parties today when I was reminded again what a wimp I am. How good I have it. How BRCA is nothing compared to the real shit life throws at you. You see, Dr. Jerri Nielsen -- a physician who found, treated, and operated on her breast cancer while moored at a remote outpost in the Antartic -- died yesterday at the age of 57. Talk about a bad ass. She was stationed at the South Pole, physically cut off from the rest of the inhabited world, and she faced -- and beat -- cancer. By operating on herself. By administering chemotherapy drugs airdropped by military aircraft.

That's simply awe-inspiring.

Here I am, a scared little girl. Dr. Nielsen bravely confronted her disease in ways I cannot even imagine or begin to think I could replicate. She wins, hands down.

But of course, in her case, the cancer actually won. In returned in 2005, seven years after its original attack, and eventually metastasized to her liver and bones. It spread to her brain. And yesterday it killed her.

But in the 11 years Dr. Nielsen had between her harrowing ordeal and her young death, she inspired many, especially me. I'm humbled by her passion for life. And I'm saddened to hear of her death. I'll put on a brave face for you, Jerri, because you had balls enough for all us women out there facing the terrible disease that you fought with such astonishing grace.

Wednesday, June 17, 2009

You are going to feel slight pressure...

Here is something I never thought I'd ever say: I'm excited to go to the gynecologist today.

I know, I know. Pelvic exams--with the awkward spreading of the legs, the cold kiss of the speculum, the geographically-indeterminate pressure as the cervix is smeared--are like the ladyparts equivalent of routine dental care: no one looks forward to it, it is majorly uncomfortable during, but once it's over, you feel good about yourself.

I'm seeing a new doctor today. Just as I constantly seek out new hair stylists, I haven't been loyal to a gyno for more than a decade. In college, I saw the nurse practitioner at the campus health clinic (I can still picture the poster she had tacked to the ceiling: while she probed my nether regions, I stared up at an inspirational image that said "Women hold up half the world."), After that, I went to Planned Parenthood for a number of years. Just recently, I started seeing a regular doctor, the kind that books out three months in advance and spends about ten minutes with you on the day you are finally graced with her presence. I saw her a few weeks before my wedding last summer, and she asked if I needed a refill of my birth control; the assumption was, of course, that once I got married, I'd start shitting out kids right away. On her windowsills sat a model of some new fangled-IUD lodged in a plastic uterus; the promotional text said that it was effective at preventing pregnancy for five years. "Actually," I said, pointing at IUD, "I'd be interested in hearing more about that." She scribbled out a new script for my regular birth control instead.

A lot has changed since that appointment, of course, including when G and I might start a family (maybe it was a good idea I didn't get one of those pups shoved up my hoo-hoo last year; five years means something a lot different now). But the biggest change, of course, is that I'm suddenly aware of my ovaries and when and if they might turn on me. So I'm going to a doctor who has intimate knowledge what that's like; Dr. L is BRCA1+ (you can read more about her here) and has already undergone prophylactic bilateral mastectomy (with the very same doctors I'm planning to use this winter). I love meeting other women like me, and working with Dr. L will allow me to have someone familiar with the anxieties and odds associated with BRCA mutations coordinate my ovarian screenings.

I'm also looking forward to my appointment today because it's proof that I'm confronting aspects of this BRCA diagnosis that discomfort me most. Last month, when I returned from the FORCE conference, I wrote that I needed to start acknowledging my ovaries and prepare for their eventual removal. My focus has been so laser-pointed at my boobs (hence the name of this blog) that I forgot (or didn't want to deal with quite yet) the realities of the flip side of the BRCA coin. I promised myself after the FORCE conference to take more seriously my responsibility to be as vigilant and aggressive about my ovaries as I have been my breasts, and now, a month later, I'm getting ready to do just that.

Life with BRCA brings discomfort and distress, but the unpleasantness of a trip to the gynecologist is more than worth it when you recognize it has the potential to save your life. Bring on the speculum!

Thursday, June 11, 2009

Confucius say

About a week before I got the results of my genetic test, I cracked open a fortune cookie and found the following: Your dearest wish will come true. I have fond memories of the prophetic abilities of these Eastern desserts; when I was very young, before I could read or even appreciate Chinese food, my mother and I would stop by a Szechuan take-out stand at the mall and treat ourselves to cookies. Relying on my mother to read my fortune, and being completely gullible, I was astonished when my fortune read "You will be soon swimming in a large body of water" as my mother drove us to the pool. "The cookie knew!" I would scream, delighted. This was one of the many thoughtful lies my parents propagated during my youth (my father also told me that the person who has the highest score is the winner at mini-golf; naturally, I always won). The result is that I now have a devout reverence for fortune cookies and putt-putt.

When I read my fortune, I immediately thought, "My dearest wish is to be BRCA negative." But then I thought, what if that isn't really what I want? (In an ideal world my dearest wish is this: I wish cats could speak English. There. I said it.) My consolation prize for losing (or winning, depending how you see it, my odds being about 800 to 1) the genetic lottery was this fantasy that I could create something out of my experience, that I could write about being young and BRCA+. So, reading the fortune another way, I reasoned it could mean that I would get my wish to write, to maybe one day write a book about my adventure, to touch and affect strangers, to see my words in print. (Let my pause to again note that, being in publishing, I have complicated relationship with books; working for a publisher is a bit like working in a sausage factory: you'll never feel the same way about the end product again. But I do believe so very deeply in power of writing and reading. I also believe the way we do this is changing -- that's why I'm writing this on the internet as opposed to a cloth-bound diary latched with a gold lock. More than 140,000 books are published each year in the US alone; the problem with being a writer isn't getting published, it's staying relevant.) So I reread the fortune and realized, at least as relates to my genetic predisposition to breast cancer, I could accept my fate if it meant I could write about it.

You all know what happened next.

If my dearest wish truly was to be BRCA negative, the fortune cookie failed me. But if my dearest wish is to write, then maybe my wish came true after all. What results from all of this writing remains to be seen (perhaps I should consult another cookie?).

I've been reflecting on this a lot lately because Tuesday marked two months since I got my genetic test results. It's vertigo-inducing to reflect now, but I hardly recognize the woman in the counselor's office who sat, stunned, as she was sentenced to a life as a genetic mutant. I knew nothing then; though I don't know everything now, I am a vertible encyclopedia of knowledge in comparison. It's only been two months on the calendar, but it's been ages mentally. And I've changed how I feel about the fortune cookie. Yes, I'm a pseudo-writer, and I would be lying if I said I never have a desire to be published. But it's not the point any more. Two months ago, I really thought I was special, that I was the only one in the whole world going through this, that I was facing intractable choices all by myself. Today, I know I am part of a robust, active, and empowered community; I have made new friends, both in person and online, who are going through the exact same thing. No two of us are exactly alike, but we all speak the same language. And this genetic sorority I was initiated into two months ago has really emerged as the silver lining of this dark cloud.

I've been reading voraciously since my diagnosis, first Jessica Queller's Pretty is What Changes and now I'm about 20 pages from the end of Masha Gessen's Blood Matters; the great BRCA book I had so fervently believed I was the future author of has already been written. I'm not saying there is nothing new to say (after all, how many breast cancer memoirs are there out there? I'm guessing thousands. How many BRCA books? At last count, two), and I'm definitely funnier (looking? smelling?) than both Queller and Gessen, but my need to validate my condition by striving so single-mindedly for a book deal is no longer my motivating force. In thinking so much about the end product, I realize now I was failing to appreciate the journey.

My new friend S is making a documentary about her BRCA; she, too, is treading in what others might call already-explored territory (Joanna Rudnick's In the Family debuted on PBS just last fall). Like so many independent filmmakers, S is struggling to secure funds, and her surgery, which she hoped to document, is barely two weeks away. In a note she posted to the FORCE message board, she lamented "I was hoping that by doing this, I would be giving back, educating, and basically making it more meaningful for myself." She decried the last motivation as "purely selfish," but I recognized so much of myself in that statement. Both S and I are struggling to find meaning in our bad luck, to extract solace from our situation, and we both turned to creative outlets to actualize our strife. Both of our projects will continue -- I have no intention of abandoning this blog, even if I'm only writing to hear myself speak -- and S's film will get made, though likely not in the form she had hoped; but as we ask ourselves why we do what we do -- share ourselves and give of ourselves -- both of us have to reexamine our motivations and our abilities. As we journey through this life with BRCA, we will often confront obstacles that will force us to change course quickly. The swift evolution of my writing project and S's film attests to our ability to adapt.

My dearest wish is different now, too. My dearest wish is now simply to live, to beat cancer before it affects me, to be healthy for a long time. I hope I can rely on the power of the fortune cookie to ensure it comes true.

Monday, June 8, 2009

A Tribute to Aunt Patti

On Saturday, I learned that one of my father's cousins, a woman I knew as Aunt Patti, had passed away. The cause: breast cancer. She was only 54.

I hadn't seen Aunt Patti in 15 years, maybe more. When she remarried, she moved to the west coast of Florida. I received a wedding gift from her last fall, but I had no idea she was sick. From what my mother said, Patti didn't tell many people; in fact, she was gardening in her yard just last week. Apparently she became ill about five years ago and had a double mastectomy, but the cancer came back recently and claimed her suddenly.

When I spoke to my father on the phone after the funeral, my first thought was "The gene claims another victim." But he reminded me that Aunt Patti isn't on the affected branches of the family tree: her mother was my grandmother's sister. But my grandmother had breast cancer twice, so it's possible there is a hereditary strain of cancer on her tree, too. (If there is, it wasn't passed along to my father, and therefore wasn't passed along to me. My father was tested for possible mutations from both of his parents -- wouldn't that have been a shitty hand? -- but came up positive only for the variation from his father.) But then again, since my BRCA diagnosis, I have a tendency to see family histories where they may indeed be none; it's a bit like buying a Volkswagen Beetle and then suddenly noticing them everywhere on the road.

Patti's death affected me more than I thought it would. It's the first breast cancer death since I've learned of my genetic predisposition to the disease. And it's also a stark reminder that breast cancer kills. Since one of the options for living life with the BRCA mutation is to screen regularly and aggressively so that any malignancies are caught early, there is a tacit implication that breast cancer is not that big of a deal. I mean, think about it: Screen until you get cancer, then treat it. But what happens when you can't treat it? My Aunt Patti got a double mastectomy and still the cancer returned (my father said it was flecked throughout her whole body). According to the Centers for Disease Control and Prevention, about 184,500 women were diagnosed with breast cancer in 2005 (the latest year for which statistics were available); more than 41,000 women died from it. That's about one in five. And that scares the crap out of me.

Unlike ovarian cancer (the other side of the BRCA coin, which is difficult to detect and to cure), breast cancer is so often viewed as both easy to diagnose and simple to treat. And with regular screenings, it can be caught in its early stages in most BRCA carriers. But once you have cancer, you can never go back; you might be in remission, you might be "cured," but you are never totally in the clear. BRCA mutation carriers have an elevated risk of developing second cancers (which are different from recurrences); according to the FORCE website, "one study found that BRCA carriers diagnosed with breast cancer have a 14% chance within ten years of developing the disease in the same breast, and a 37% chance within ten years of developing the disease in the opposite breast. Another study found a 40% chance for BRCA carriers to develop cancer in the opposite breast within ten years of their initial diagnosis. The risk for a second breast cancer among women who develop sporadic cancer is about 10%." So if were to get cancer -- which, statistically speaking, I will -- I would always be waiting for the other proverbial shoe to drop. And you think I'm stressed now? You ain't seen nothin' yet.

Patti's death comes at a difficult time in my BRCA adventure. Recently, I've been second guessing myself, debating whether or not a prophylactic mastectomy at this point in my life is really the right course of action. After all, I just got a clean bill of health, right? I mean, my breasts are healthy; why amputate them? But then I hear about someone like my Aunt Patti who didn't have the information I have, who didn't have the chance to beat cancer before it beat her, who tried to do all she could to fight but still lost in the end. And I know I have to do this. I'll probably never be one hundred percent sure I'm making the right choice (after all, I don't have a hundred percent chance of getting cancer; what if I'm part of that lucky 10% of BRCA carriers who never fall ill? Well, once my breasts are gone, I'll never know), but losing women like Patti makes me realize how lucky I am to have the option to drastically lower my risk of developing a disease that kills. I know Patti would have wanted to live -- for herself, for her husband, for her daughter. So I will exercise an option she didn't have and keep her spirit alive in my heart and thoughts.

Rest in peace, Aunt Patti.

Tuesday, June 2, 2009

Breast Friends

I've wanted to write for a while about BRCA and friendship, about how my diagnosis has strengthened some bonds and weakened others. For the most part, since I received news of my BRCA status in April, I've been astonished and humbled by the overwhelming support I've received from so many people in so many corners of my life: friends have offered to drive me to appointments, accompany me to tests, take me away on vacations. Getting diagnosed as a BRCA carrier has been a seminal event in my life, and so many of my friends have recognized its magnitude and responded to it with incredible generosity and empathy. But on the other hand, I've had some folks turn tail and head for the hills: they have stopped calling, said terribly insensitive things, and left me feeling alone and abandoned. But luckily, the supporters far outnumber those in the compassion fail camp, and I take comfort in their love.

This weekend, I was reminded again of how many fantastic people I have in my life and how much their love and support during this incredibly tumultuous time means to me. Last month, my dear friend N, who lives in DC, suggested we take my boobs on a girls vacation this summer. We looked into various options -- yoga retreat in Mexico, spas in the Southwest -- but we couldn't coordinate a date or time, and plans fell through. That was the end of it, or so I thought. Turns out my dear husband and N cooked up a plan, totally unbeknownst to me, to bring her to Chicago for the weekend to surprise me. When she showed up on my doorstep on Friday night with G, who had gone to pick up the takeout we order every week, I was so shocked it took me hours to believe that she wasn't a mirage. It was the most surprising surprise of my life.

It was an amazing weekend -- a celebration of friendship, womanhood, and resilience. We spent the afternoon at the Bliss spa at the W downtown, where we got massages (and unintentional hilarity ensued: it turns out that when N booked the hotel, she mentioned that she was treating her friend, i.e. me, who had recently found out she had the breast cancer gene and was preparing for surgery, to a weekend on the town. This somehow got translated in the reservation system as a "friend with cancer," so when we showed up for our massages, my masseur very politely asked what kind of cancer I had. It was an awkward moment -- a lot of "Huh? What? Wait, no. I don't have... um, I have a gene..." until he said, "Oh, my mother and sister are both carriers of the breast cancer gene, too." And it's a small, and strange, world after all, folks). We lounged around in hotel robes, sipped Veuve at the bar, got hit on by men with spiky hair, and treated ourselves to ample food and drink. I can't remember the last time I felt so good.

Sure, life will go on after I have a mastectomy (indeed, that's the whole point, isn't it? To avoid breast cancer and all it's attendant unpleasantness), and I'll have reconstructed ta-tas to take to that yoga retreat in Mexico some day, but my natural boobs and all of the anxiety and stress they are causing me are on a farewell tour right now, and I'm so thankful that G and N arranged for her to jump on the bus this weekend. This has been the hardest few months of my life (and looking at my calendar, it doesn't look like it's going to get any better any time soon) and this totally unexpected act of compassion and friendship was exactly what I needed to cheer me up. I'm so lucky to have people like N and G in my life; they are the breastest of my breast friends.