first, how the fuck is this blog still about cancer, even a little bit, almost 14 years after my original diagnosis? i'm feeling a little resentful of that fact, as i typically do after my annual oncology appointments, which began with a 9 hour marathon at stanford yesterday.
actually, it really began a pamf, seeing dr. bates for my second post-op appointment. (i'm feeling too punky to photograph myself today, but i will tomorrow as it has been exactly two months since my reconstruction. in the meantime, have some fun with your own foobs and a flashlight, as danny and i did with mine last week. a nurse friend told me that this works with all implants, but since i have no pesky breast tissue to block the light, it works very well with mine. fair warming, it's a bit startling to see *all* the veins under your skin.) dr. bates is very very pleased with my final result, as am i. the right side is a little tighter in its pocket still and so i've been instructed to massage more vigorously. he asked again if i want to do anything about my nipples (or lack thereof i suppose). apparently i have enough aureola skin to reconstruct out of that but i told him i think i'll pass, at least for now. anyway, i see him in another six months.
i was a little nervous about seeing my oncologists at stanford because, as you'll recall, i completely circumvented them when i decided to do my mastectomy. i intentionally went to a breast oncologist who knew nothing of me except what she read in my (extensive) records. i was tired of being treated like a hysterical/hypochondriacal teen, instead of a well-educated woman. so, i got my bmx and scheduled my annual stuff at stanford for after everything was done. surprise! anyway, i unexpectedly had a chance to spent about 20 minutes with dr. link yesterday (he's the onc that treated me for hodgkins, but not the one who follows my long term progress). it was incredibly, incredibly cathartic and validating for me. the nurse put me in a conference room where i rubbernecked until he happened to walk by. i caught his glance and he said 'hey, what are you doing here?' waiting to talk to you. he gave me a most sincere bear hug and then stood back and said 'i heard you had sort of a big summer?' to which i am certain i winced. what followed felt how i imagine it feels to have an overbearing father tell you he loves you and is proud of you, on his deathbed, after years of trying for nothing more than to please him. 'incredible, you're ahead of the curve. you made an incredibly tough and smart decision to take control of your risk. i'm impressed. you're very strong.'
in other words, he completely validated my decision to have a prophylactic mastectomy, after i decided i didn't need or want his validation. and it felt, at least momentarily, amazing. his most recent study (and that of an oncologisy at st. judes) demonstrates that the breast cancer rates among female hodgkins survivors are almost identical to those of women with the BRCA1 gene. *jaw* that data is more discouraging than the data that i based my decision on. sadly, that means that the 'kinder gentler treatment' i received didn't really improve cure rates, or long term outcomes for hodgkins lymphoma patients. radiation is radiation and even in lower doses, (25 Gy in my case) it's both a cure and a curse. i'm posting this article in it's entirety so i can find it later. dr. link is quoted in the second half.