How Many Times is Too Many?

Because we are on the heels of another election, I was asked to tell my story – again – on a Zoom panel with other advocates and patients for healthcare security. This ask isn’t uncommon, not during legislative session or election season, or when policy comes up that, while important, will more than likely won’t change the minds of the people it is designed to sway. I hate to say it out loud, but I don’t have faith that it works even though I worked in healthcare advocacy for a couple of years, even though I testify, and write, and call, and put myself in front of policy directors and the media. My medical journey and all of its injustices feels like old hat. Lawmakers in committee seem to look right past me. Perhaps they remember my story from another session or another visit. Maybe they make quick assumptions based on my short hair, my woman-ness, my tattoos, my outsider-ness. I once watched a Republican Representative – cough, Greg Gianforte – squint his eyes in a sort-of-glare, talk right over me, and pivot his chair in the opposite direction. Maybe I was too gay looking for him. Just another liberal.

For Medicaid expansion, for Paid Leave, for expanding funding for cancer research, for closing a loophole on colorectal screening, for access to early detection, for Medicaid designation of cancer-related injuries, for insurance coverage for persons with pre-existing conditions, for domestic partner recognition, for healthcare debt… My god, now that I think about it I’ve been telling my story an awful lot.

Don’t you already know it? Do you really care to know the details? Have I been playing my sad-ass fiddle too long?

In conversation with a business community member the other day, we got on the topic of … oh, hell, I don’t know, but he timidly asked: do you mind telling me what kind of cancer it was? No, not at all, my shame mostly ran out from the last seven years of coming to terms with my body’s irreparable parts and responses. They took your bladder out!? They did – and I am enthusiastic about this part: they had me open for 8 hours while they cut 18 inches of my descending colon, quilted a cylindrical pouch and reconnected my urethra and ureters. It’s a work of art, really. And my scar is barely visible, the delicate hands of my surgeon putting me all back together after taking out what had to go to waste.

Bladder, uterus, ovaries, lymph nodes. 42 lymph nodes. You only have 250-some. They took everything around the cancer that could be the next site. It was the best measure at the time. Even a year later things had changed. A year later they wouldn’t have had to take all of those nodes and perhaps I wouldn’t have this unhinged swelling in my legs and abdomen. Two years later and they would’ve kept the DNA from the tumor – they could’ve told me if it was genetic before I learned that I was poisoned.

Mayo clinic, collecting data like I told them they could, sends me a letter every year to ask if the cancer has returned and if anything has changed. Sometimes I think of that letter coming after I have died, and my spouse seeing it, maybe even opening it, and being assaulted again with a wave of grief.

The first descriptor that came to mind was “flash-bang” of grief. We are through an uprising and this is a fragment of language I wouldn’t have used two years ago. Five years ago I would’ve been testifying in congressional offices to protect my access to healthcare. Seven years ago I wouldn’t be able to hold my urine, yet, a new language barrier between my brain and my body. Eight years ago today, I was on the back steps of my house, my feet bare on the cement with my phone pressed against my face, calling each of my parents, one after the other, delivering the results, crying into my hand as the leaves cast yellow towards the sky.

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