“My scans again showed progression. The cancer has continued to climb through my bones and is present throughout my sternum, ribs, clavicle, hip, and more. The cyberknife treatments, however, did work on my spine—good news!
“Unfortunately, there are too many ‘lesions’(hate that word) throughout my body for another concerted cyber treatment at this point (plus, even with insurance it was a ridiculously costly procedure—I am now on an 18-month payment plan for those five sessions—I liken it to a ‘car payment for sick people’!).”
That was an excerpt from my friend Jennie’s blog which chronicles her incredible journey from a small lump discovered in her breast to the cancer that has now metastasized throughout her body.
I was working with her at TPAN when she first found the lump and I witnessed her entry into the world of chemo, vomit, weakness, fatigue, and pain. I also heard her early tales of how our “gold standard” Blue Cross Blue Shield health insurance had denied her a doctor-recommended MRI (according to them, an X-ray would be just as good) and how her out-of-pocket costs were soon overwhelmingly more than her entire annual non-profit salary.
In this latest blog she continues, “As far as next treatment steps, we are looking to change my chemotherapy and hormonals upon insurance approval/payment. I have already spent over 20 hours on the phone with my insurance company in the past week trying to gain approval…but it’s still a work in progress at this point. Without approval, this chemo will cost over $9,000 a month! That comes to $335 per day…yowza. I asked the insurance rep, ‘When did trying to stay alive become so expensive?!’ She didn’t really seem to have an answer for me.”
Jennie is 31. She is the kind of beauty that makes all the men in a room, gay or straight, turn to stare as she walks by. She has always eagerly done work that helps others, especially in the AIDS community. Her presence in this world is one tiny but powerful pushback against all the ignorance, hate, selfishness, and greed that seems to surround us. The thought of losing her to this disease which might have been rendered powerless if she’d had unfettered access to the best health care from the very beginning devastates me. It also galvanizes me.
Through her entire journey, except perhaps while running to the bathroom to throw up, Jennie has always had a smile that lights up the room, a witty, sardonic sense of humor, a realism that, while leaning toward optimism, never gets close to that phony Disney-esque illusion that love and beauty and goodness will always win out. Jennie has seen enough, even before the cancer, to know that all too often that just isn’t true.
Jennie and other cancer-fighters like her are precious reasons for me to continue to fight for universal healthcare in this country. As are all the people I love who battle HIV/AIDS. As are my diabetic friends and my mother, experiencing dementia and emphysema. And the millions I will never know personally whose lives are affected every day by pain, disability, suffering, and lack of access to the medical care that would at least provide some relief, if not a solution to the problem.
I admit, I’ve been discouraged lately – how can DUH ever come to be, let alone make a difference? We have $320 in the bank, but we need $96,080 more just to rent a stage, port-a-potties, and the crew to put it all together. I wrestle with technological ignorance and impatience and I juggle the relentless “to do” list of DUH’s creation with my “day job.”
But ten times all of that is nothing compared to what Jennie lives with. Who am I to complain or feel discouraged?
Jennie closes her blog with, “So, I will dance. I will sing. And I will keep fighting and living as long as I can…embracing the highest of highs and the lowest of lows, because that is what living is.”
And she will be sitting on that stage with me at DUH, the power of her story and her fighting spirit part of the fuel that ignites the crowd and makes our demand be heard. Thanks, Jennie, for inspiring me, for reminding me to put my “fierce” on and get back to the fight.