Tuesday, July 14, 2009

Sky Rockets in Flight, Cape Cod Delight

I spent the 4th of July holiday last weekend high above the waters of Cotuit Bay at the Cape Cod retreat of my good friend N's family. (Astute readers will recall N from her surprise visit to cheer up me and my boobs in May.) On a steep cliff overlooking the ocean, the rambling house--built in the mid-1800s and supposedly haunted--has an otherworldly quality to it; it welcomes you and envelops you and you never want to leave. It has that wonderful haphazardness to its layout characteristic of a house that's been built on and modernized throughout the years; there are so many rooms and nooks and crannies to explore. For a child, it must be a hide-and-seek fantasy land; to me, it was a maze of good napping zones. I kept finding new places I wanted to curl up with a book. (Oh, and it was a home filled with books! I could have spent a month just reading through their library.) I spent most of the weekend flitting--barefoot and bathing-suited--between the pool and the porch, leaving only to attend a parade and to visit my dear friend A and his family at their Cape house across the bay.

I've known A since we were both under three feet tall. He now tops out at well over six-five, making him one of the only people (my brother notwithstanding) who can make me fell like a shrimp at five-eleven. A and I attended school together, grades kindergarten through twelve, and he holds the distinction of being the only person who has made me laugh so hard I've peed my pants--twice. Two years ago, A got sick. He developed a rare form of bone cancer--osteosarcoma--that typically affects children; there are fewer than 1000 cases of it reported each year, and of those, half occur in patients under the age of 15. At 29, A fell ill with a disease that few people his age ever suffer from.

A still lives near where we grew up, and I've settled 800 miles west, so I had seen him only twice since he got sick: once at Christmastime, when he was bald from chemo and emaciated from the drugs, and again at my friend K's wedding, when his hair was coming back and his spirit was returning. When I saw him last weekend, he looked fabulous--happy and filled-out, his dimples deep once more. A is one of the funniest people I've ever met; his humor is legendary. And because I conflate him with his vibrant personality, seeing him stripped of that life and love and laughter during his cancer battle scared the shit out of me. A is all energy, and when cancer took that away from him, I was afraid we might lose him. (It's still a thought that causes me to shiver.) But luckily, we didn't. He is in remission but under close surveillance.

I had been wanting to share with A my own battle--my BRCA status, my decision to pursue surgery--because I knew he'd understand. Our visit--brief though it may have been, my feet hanging over the side of his pool, playing with an inflatable raft in the water--was so different, so much more about things A and I would have never imagined having common ground on, that we stopped over conversation mid-breath more than once to say, "Can you believe our lives now? So affected by cancer?" In the past, A and I never got deeper than analyzing the meaning of a particularly oblique Phish lyric. But we were changed now. We spoke the common language of cancer.

I was surprised to feel a bit meek around A. In my daily life, I'm the most tragic figure I know--a healthy women who is doomed to breast cancer unless she takes drastic measures. But around A, I was the lucky one. He was the cancer survivor; I was just the wimp who wants so badly to avoid the disease she'll do anything to stop it. I don't want to be a cancer survivor; I don't want to get it in the first place! And, luckily, I have options. A's mother is a breast surgeon, and she spoke candidly to me that afternoon not as a patient but as her son's friend; she told me I was doing the right thing. That meant so much to me coming from a woman who deals with breast health everyday; one of the most frustrating aspects of being a BRCA mutant is that so few people will actually tell you what to do (or even what they would do, or recommend for their wife or daughter). But A's mom told me I wasn't crazy, that this is for the best, and that I'll be happy to be done with the fear and anxiety. And she's right. I am doing the right thing--for me at least.

But here was A. He didn't have a choice. He didn't know he would be, at 31, a survivor. He had no forewarning. And to be stricken by such a rare cancer! I have a whole network of BRCA babes I can turn to for guidance, support, advice; he had no one. And yet, as I sat there feeling silly--worrying that A must hate me for the knowledge I have, the prescience he didn't--I knew he would never want me to go through what he did, the surgeries, the treatment, the uncertainty. And he told me he thought I was awesome, brave, badass for doing what I'm doing. But he is really the rockstar, not me. He is on the other side of a war I hope never to fight because I'm so scared of dying on the battlefield.

Our conversation coalesced a lot of disparate thoughts I've had about that silent distance between survivors and previvors; how do they really feel about us? And where do we fit in? They are part of a club I very much do not want to be admitted into, and yet most of them, if they had the choice, wouldn't be a member either. My visit with A made me realize, though, that we are probably more similar than different; he gets me in a way that few people do. And I want to erect statues, dedicate great works of art, write folk songs to honor his enormous bravery. A is a role model for me in my journey, even though we are taking radically different paths. He triumphed despite his cancer, and I will flourish despite my genes.


  1. Once again you astound me, both with your eloquence and your profound understandings. Oh, and can I also say on a more trivial note that Cape Cod is my most favorite place on earth and I am SOOOO jealous you were just there! I've been going for over 40 years (Welfleet, Truro, P-town). It's where I plan to go to celebrate once I am done w/all my surgeries & treatments.

    But anyway, thank you also for your comment on my blog -- I am thrilled to hear you have seen actual live boobs done by the Dobs Ferry docs! Oh, and Dr. S is my PS but it's Dr A's partner, Dr Keleman that's my BS. I liked him very much, too.

    I often think about the differences and similarities between BRCA gals and those of us already w/BC with or without BRCA. My personal feeling tends to be one of both respect and "motherliness" towards all of you. My mother has BC, I have BC and I have an 8yo daughter. While I might be BRCA 1&2 neg, I've also no doubt there are other genes out there. I am walking a path you don't want to go and you are walking a path I hope my daughter doesnt' have to. But we are all effected and can help eachother along. You sharing your journey and me sharing mine are a good start. I'm glad I "met" you, just wish it were under different circumstances :)

  2. What a beautiful post. You have a lovely way with words.

    Teri S.