Tuesday, May 19, 2009

Fresh-squeezed Florida melons

Wanna hear something hilarious? It's pretty embarrassing, really. Oh well, here goes. So I've always sort of bristled when anyone referred to BRCA as "the breast cancer gene," mostly because I thought it simplified the situation too much (ovarian cancer risk is elevated in mutation carriers, of course, but other cancers, such as prostate, pancreatic, and melanoma are also associated with it). Whenever "the breast cancer gene" came up in conversation, I'd say something like "Oh, well, you know, it's much more complicated than that. It's actually called BRCA and..." blah, blah, blah. You get the idea. It wasn't until this weekend that I put two and two together and figured out why people call it "the breast cancer gene": because that's what it stands for! (Head slap) I can't believe how slow I can be sometimes. What part of my brain did I destroy in my chemical youth that I can't figure out that the BR stands for breast and the CA stands for cancer? Someone, seriously, take away my MA. I don't deserve it.

That said, I've needed a few days to collect my thoughts about the FORCE conference. It was, as I expected it to be, amazing; I learned so much and met so many wonderful people. But it was also a lot harder, emotionally and physically, than I expected. There seemed to be a vertiginous moment in every session I attended when my breathing shallowed and the floor seemed to pull away from my feet and I thought, "My god, why me? Why is this happening to me? I can't deal with this." That feeling never really left me, and I seesawed in and out of moments of acute philosophical crisis all weekend. I had trouble turning my brain off at night, and I had horrible dreams, including one on Saturday from which I woke in a cold sweat only to hallucinate that a demonic Disney character (it looked like this guy) was eating my hand. Note to self: pack sleeping pills next year. Or better yet, Xanax for daytime and Valium for nighttime. You'lll be able to recognize me because I'll be the one who looks totally blissed out.

(And I'm definitely going back next year. My father, who attended with me and was one of only two men (at least that I could find) who were there as carriers and not supporters (and more on the disparity between men and women in the BRCA community at a later date), and I decided to make this an annual pilgrimage. I'm going to bring G next year, too, and hopefully we can convince my cousin and uncle to join us, as well. A post-genetic futures family reunion, if you will.)

But the conference was everything I'd hoped it would be in terms of community and sisterhood. Everyone wore Mardi Gras beads signifying their status (I wore a blue strand because I'm BRCA2 and a purple strand because I haven't yet had cancer). The beads were both festive and subversive; you get baubles on Bourbon Street when you oblige the request to show your tits, and here we are at a conference about tits. It was pretty brilliant reclamation of a sexist practice, if you ask me. The sessions -- ranging from a history of mastectomy (note to self: be thankful you are getting your boobs lopped off in the 21st century) to dealing with fertility to choosing what kind of reconstruction to pursue (there are about a dozen different ways to make fake boobs) -- were astonishingly informative. And the food was great! (Word on the street is that Sue Friedman, the FORCE founder, is a vegetarian, so I was pleasantly full of delicious veggie food all weekend!)

But the best, and also most surreal, aspect of the conference was the so-called "show and tell room." Imagine a nearly bordello-type setting: women lounging around on expensive furniture in various states of undress, looking at you expectantly. This alternate universe was where I found myself Friday and Saturday night. These volunteers, of course, weren't selling themselves; they had graciously agreed to reveal the results of their reconstructions and discuss their surgeries, recoveries, hopes, and regrets. I saw every kind of breast reconstruction imaginable: breasts made of stomach fat, breasts made of silicone, breasts without nipples, breasts with reconstructed nipples, breasts with real nipples, breasts with scars, breasts with imperceptible incisions, breasts that looked good, breasts that looked bad. I even saw a woman who had opted out of reconstruction entirely; her chest was as flat as a prepubescent boy's. I found this part of the conference the most difficult because there is no precedent for it; there is no social protocol for the experience of speaking with a topless women about surgery and then asking to feel the results. Nevertheless, my goal next year is to be among the women in that room talking about their surgeries and showing off their new tits. Their bravery and grace is something that, despite the hyperventilation and psychic shock it caused, I hope to aspire to.

Some other things I took away from the conference:

- It's time to get my head out of the sand when it comes to my ovaries. I need to start cancer screenings on my nether parts, and I need to prepare for their eventual removal. I'm "lucky" in the sense that, as a BRCA2+ carrier, I have less of an astronomical risk of developing ovarian cancer (it's about 25% as opposed to 40+% for my sisters with BRCA1+), but it's still ten times more than the average women walking down the street. I need to start thinking about when and how I'm going to use my ovaries (more on that in a second) and learn more about what it means to go into menopause at 40.

- Related to the ovary front, G and I need to do some serious thinking about our future babies and how we want to make them. In a session about the challenges unique to being a young previvor someone said that their BRCA diagnosis was most difficult to deal with when it came to issues of reproduction, and I'm beginning to realize I feel the same way. If we get pregnant the old fashioned way, there is a 50% chance our child will also be a BRCA carrier (and, for ethical reasons, we would not be able to learn our child's status until he or she turned 18, so what would that feel like to wonder for so long?). If we did it the new-fangled way, we could make use of IVF technology to screen-out BRCA positive embryos; this would guarantee that the mutation stops with me. Of course, as wonderful as that all sounds, it's also an extraordinarily fraught decision; if that technology had existed 30 years ago, I would not be here. Furthermore, is BRCA, in the grand scheme of everything that can go askew genetically, worth investing in expensive and morally dubious technologies to eliminate? I don't know the answer yet, but it's on my new post-conference "to-do" list of things to figure out. Stand by for more riveting discussion of my unborn children.

- On a more practical front, I need to purchase supplemental cancer insurance. I also need to read carefully my medical insurance policy to understand what is covered and what isn't; this may require propping my eye lids open with toothpicks because, geez, that insurance fine print really is the cure for insomnia. And I need to get life insurance.

- When it comes to surgery, the thing, I've discovered, that I'm most afraid of is being put under. I think I can deal with everything else. But never having been anesthesitized, I get a little panicky when I imagine this part of the process. Apparently, some women work with hypnotists to help create calming strategies. I'm going to need to get me some of them, for sure.

Overall, as I've said, this was an overwhelmingly positive experience. I recommend anyone out there considering attending to plan on it for next year. And make sure you come find me. I'll be that girl giving you a come-hither look in the show and tell room. ;)


  1. Good gosh but that's alot to deal with!

    I genetically passed on 3 mutations for blood clotting to my son (I'm a thrombophiliac)...not the same as BRCA, but it was hard for me to think about having "done that" to him so I can see where you are coming from. To spare your child any pain is an instinct we mothers have before our children even are more than a dream in our heart. Yet as you say, you wouldn't be here and what a loss that would be. Plus, who knows what kind of ways they will come up with to manage our genetic predispositions to all kinds of stuff?

    Yes, hard stuff indeed.

    I hope, for selfish reasons, that you post more about what you thought of the differing methods of reconstruction. I'm trying to make my own decisions right now and it's very difficult.

    Great write up -- felt as if I were there!

  2. Stephanie,

    I was in the Young & High Risk Focus Group where you mentioned your blog. God knows how I remembered the name of it with all the information we received, but I thought I would check it out.

    The Conference, for me, was very much like it was for you. It was filled with every type of emotion possible. I was reassured because there were people “like” me there, upset that they had reason to be there, sad that I had reason to be there, guilty that I even felt bad for myself, and then a tinge of anxiety over all the information. My dreams were Disney character free, but there was a heinous surgery nightmare after viewing the Show & Tell Room. And I was taking sleeping pills, so you may want to look into something stronger (ha). It was definitely, as you said, a whirlwind of emotions; but, a positive experience overall.

    I am interested as well to hear more thoughts on having children and passing the gene along. On one hand, I see that I would not be here had the option to eliminate carriers. On the other hand, why would someone not want to protect their child from having to make the decisions that we, ourselves, are faced with. It’s a very personal decision and a very difficult one. I’m thankful that I am not at the age where that choice is a necessary one…yet.

    The Show & Tell Room was, by far, the most empowering, albeit uncomfortable, event of the weekend. I thought that I had made surgery and reconstruction decision and had even finalized them with my surgeons (PBM in November). However, after seeing and learning about more options, there was no way I couldn’t seek more information from my surgeons. I came home from Orlando and immediately called the surgeons to make another pre-surgery appointment. Like you, I hope that when I attend next year’s Conference, I can be brave and comfortable enough to showcase my “foobs”.

    Your blog is very interesting and insightful, it offers different opinions that I do not have. Thank you for your willingness to share your journey and your feelings. I wish you the best and I will continue reading! 

    - Brandi

  3. (Waving at Brandi!) Thanks so much for finding me. We'll be show and tell room buddies next year!

  4. Hi Stephanie,

    So nice meeting you at FORCE. The FORCE conference can be very overwhelming to say the least! I have gone for the past 4 years...it got easier once my surgery was over. I always leave there with a heavy heart for all of the women at the beginning of their journey. My advice: there is light at the end of the tunnel and you too will get through it all. It's nice to get to "the other side." The road there is not easy.

    Everyone's experience with surgery is unique and your fears are real. I am confident that things will go very well for you and you will have no regrets at all. Keep in touch. Contact me before your surgery and I can give you some "good tips."

    Lisa (Twitter: ThePrevivors, Facebook: The Previvors)

  5. Thanks for stopping by my blog. Love your blog too.

    Hope to meet you next year at the conference.