on dying…or not living.

i can’t think of a better way to ring in the new year than to post about dying! not really, but i’ve had some space and time (on the couch, in bed late at night, on the plane) to have a few good cries about what the hell it is i’m going through and why i want to crawl under my bed. mike is going to post an update on where i am in my treatment plan (upset alert: i have about a year or more left. you heard it right: a year or more. i have an aggressive cancer, remember?), so i’ll save those details for him to share and reiterate to those who might not be reading. i know everyone wants me to be done, but hearing your surprise at how long i have to go doesn’t help.

before i reflect with you, christmas in illinois was so wonderful to be with family and see a handful of friends. we savored every minute, every smile, every hug, every story about your lives, every snowflake, and every bite (once i could eat more normally).

now that we’re back, however, reality is..real. i look back on some of my posts and get annoyed at how upbeat and motivated i was. i’m contending with side effects like acid reflux, a nasty sinus infection that is tougher without nose hair and might influence if i can get chemo tomorrow, changing insurance companies in the middle of a major health event (i know my employer is saving money but i can still be frustrated over it) and being on the phone for approximately 3 hours with 26 different calls (i counted) today alone to get things right, and seeing that despite my positive treatment response, i still have a long way to go. i’ve read the studies that conclude staying positive actually doesn’t help when you’re delusional and not recognizing the very tough shit you’re going through. recognition….check.

so why a post on dying? i’m still trying to connect the dots psychologically and am doing a dry run here.

a cancer diagnosis conjures up vivid images–either of ones we have witnessed, seen in movies, or fear the most for ourselves. sterile dimly-lit hospital rooms, pale, thin and bald patients shuffling around with IV poles, families camped out with somber faces, otherwise criss-crossing the country for a last ditch miracle trial, organs shutting down one by one, and ultimately a quiet passing and funeral smattered with pictures of the person when they ‘were healthy.’ i’m not diminishing what has too often been a reality. i’m just sharing the reel that’s been playing in my mind, wondering if it will be me some day.

maybe because cancer is so prevalent, we think we know the end of the story once cancer announces itself.

it’s taken me awhile to zoom out of that frame and recognize that cancer patients are living longer, both having come through their disease without reoccurrence or managing it more like a chronic disease. even if i remember these facts, it doesn’t lessen the blow of reality. no, cancer is not the same as high blood pressure or diabetes, but the oncology field seems to be moving that way. as do the patients. in the documentary, crazy sexy cancer, kris carr has a rare stage iv cancer (her liver looks like swiss cheese, full of tumors). the film traces her experience over several years, as she tries out different lifestyle changes and comes to grips with what living with cancer means to her. at one point, her diagnosis is reframed as ‘living with a set of tumors’ and not the c-word. that sticks with me. and through the video and since then, she’s tried to give cancer a makeover so that the images we have of cancer patients are replaced with others, of vibrant human beings who are out living their lives fully and richly.

on the dying part…well yes, any one of us could get hit by a bus tomorrow (for the record, i hope not). and we know the odds of me getting through treatment and surgery without fatal complications are high. i will live past my cancer.

however, i now have a more proximate idea of what i will die from and how i will die. the movie in my head could be a reality, no matter what reframe i or anyone else gives cancer. it still takes lives in a very step-wise fashion. so what’s better–being blissfully ignorant and bam, the bus hits you? or knowing that some uninvited cancer cells might have a foothold and survive beyond brutal beatings, just waiting to grow again in a more complicated way…that makes you criss-cross the country searching for a last ditch medical trial, etc etc etc?

why is it so scary? why is cancer so scary? for me, beyond all the treatments that aren’t necessarily a cake walk, i’m realizing that it’s less about dying (we know we’ll all die some day and anticipate it’s at a ripe old age), and it’s more about not living and not living too soon, with too many unfinished, undone, unstarted, unlived things out there. dying would make me really sad. it’s related to an earlier post about grieving the life i dreamt for myself too.

so my new years resolution: focus on the not dying part, the living part. don’t put off living until i ‘get through this’ because frankly, as i said, it’s going to be a long time in the physical sense and maybe forever in the emotional sense.

i’ll take my cues from the many amazing women and men i’ve met in the cancer world so far, and friends who have stepped up with compassion so deep and adventures to promise for the future, and mike’s christmas gift of the 1000 things to experience on this planet.

starting tomorrow when i come out from under the bed.
until then,
ps i had these professional photos taken before i started treatment, to capture the ‘me’ then for a project For Luli to help newly diagnosed women. i offer it up here because it makes me both happy and sad and reminds me of who i was and who i am.

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