beating myself up for being human.

i mentioned going on a retreat for young women with cancer this weekend. spending time together with these women was transformative. they absolutely got what i’ve been through without explanation (we could skip the surface-level conversations and go right to the core, quickly realizing that cancer patients at our best don’t waste time, mince words). they taught me things, revealing truths and fears and hilarities in their own experiences. some of the women are stage iv. some are thinking about end of life decisions. while others are out of treatment and hoping to lead a life that will help avoid reoccurrence. though if we learned anything from this experience, it’s that nothing is certain. we all know the statistics by heart.

one shared experience is how others, and each of us, have tried to pinpoint what caused this. as people, when we see a comrade come on hard times, our mind tries to compartmentalize what’s happening and reason out why the tragedy won’t happen to us.  for breast cancer, i can’t count how many times people asked, after sharing my diagnosis: do you have a family history? no, no family history. nope, no family history. ah no, no family history. i find myself now circumventing this to save that person’s breath by announcing, “i have breast cancer with no family history!!!” (as an aside, there is a spectacular book of comic sketches by the late miriam engelberg called, “cancer made me a shallower person.” i laughed out loud when reading it, because she started doing the exact same thing.). 

as miriam points out, what people want is reassurance that they’re safe.  i’ve experienced or heard about this coming across in other ways too, beyond the whole family history/genetic angle.  i can see wheels turning in people’s minds as they talk with me…internal monologues like, “oh, she doesn’t have a spiritual practice.” “oh, her diet is not as good as mine.” or, “she doesn’t work out as much as i do.” “she isn’t as balanced as i am.” there’s a smugness to it that i instantly recognize.  but i can’t stay upset about, because i’m sure i did it too, and will do it again. (side note: the genetic elements of cancer are persistently reported on, but the majority of breast cancer cases, and most other cancers too, are not related to family history. we just. don’t. know. shit. about why this is happening. my guess is the toxic soup we live in. but i digress).
one of the things i did in our downtime this weekend is chronicle a list of reasons why i think i got cancer. now rationally, i know this is preposterous. we’ll never understand why i got it.  why me? well, why not me? if you’re human, you’re subject to wins and losses. and, spoiler alert, it’s a matter of time before tragedy, upset, and grief find you. they found me earlier than anticipated. my project is to accept the cards i’ve been dealt. or not accept them but move around and past them. cancer is a great equalizer. 
but anyway, this list. some cancer patients don’t go through this self-blame. i have, in an intense way. maybe it’s part of the New Perfectionism that our American culture is obsessed with. whatever it is, i’m going to share it with you exactly how i wrote it in a stream of consciousness. and then i’m going to light it on fire in the backyard. if you read it, and think to yourself, “oh god, i do that.” well, as one of my retreat friends pointed out when i shared this list, “you were just living.” and living i was. and living you are.  as the retreat facilitator said of an african proverb, “when death finds you, make sure you’re alive.” trying to be perfect is boring anyway.

here goes:

  • drinking too much growth-hormone-infused milk as a child and into my 20s
  • binge drinking in high school and college
  • eating too much cheese as an adult
  • drinking unfiltered water from our 1908 pipes for 5 years
  • flying too much and going through airport x-ray machines too much
  • work stress and figure-my-life-out stress
  • eating too many corn dogs in college
  • not sleeping enough hours each night
  • being on the pill for 15 years
  • not having kids in my 20s
  • not exercising every day
  • enjoying bacon in my omelette during weekend brunch
  • caving into hamburger cravings
  • putting this weird cream on warts on my fingers for a year that one was supposed to stop if one got pregnant (upside: the warts went away)
  • not using sulfate-free body products or aluminum-free deodorant until recent years
  • not using bleach-free tampons
  • dry cleaning work pants
  • not having a religious practice

yeah, that’s right. holy shit, eh? it’s like the airing of grievances, but directed at myself. now it’s out there and we can move past it, or at least work on moving past it. 
a few last thoughts. i’ve been fascinated by comments that reflect on my strength going through this. yes the life-saving treatments negatively impact my quality of life, ironically. and they suck and are brutal and at times even barbaric (e.g., kill all your cells? check. lop off your breast? check.). but they are the best we have. and if you find yourself with a cancer diagnosis, you’d likely do the same exact thing. because the choice you’re making is to live or not live.

and speaking of living, my favorite moment of this past weekend was in an interview with an doctor who specializes in breast cancer and clinical advocacy (e.g., you hire her to stay on top of the research relevant to your case and advocate for certain things with your oncologist, when the oncologist’s incentives may not be aligned with your best interest. sad that her job is even necessary.).  one of the metastatic women in our group was given 2-4 years to live. the doctor responded to this statement, “excuse my french, but bullshit. cancer statistics are old. by the time the longitudinal data get compiled and peer reviewed and published, they are so irrelevant. there are new treatments coming online all the time that the old data don’t involve. don’t pay attention to any lifespan numbers that you’re given because they are, in fact, bullshit.” to see my friend’s eyes light up. it’s like she was given a new lease on life. and i was lucky to be there to witness it.

i got to spend time going over my case with this doctor. we talked a lot about whether or not to do radiation. she said i’m at the edge of knowledge, and at the annual breast cancer conferences, she’s seen people get close to fist-fights about this topic. they don’t know if it will help me or not. but her advice, echoed by all of the metastatic women: “take the path of least regret.” that settled it for me, so radiation it is. even if there’s a chance my interim implant could collapse. i start a 5 week course towards the end of april.

thanks, as always, and talk with you soon. in the meantime, yay for farnosh and marino on the healthy baby girl nazanin! and, for the image, pat, of driving a tractor to the post office. and sabine, for the beautiful hummingbird. enjoy the attached pic – my mom made this while visiting and clipping through our old magazines. kind of a cancer ransom note. i love it.


ps the first and subsequent showers have been AMAZING!

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