Wednesday, May 23, 2012

this day here

I feel so small today. Tiny bones and tired muscles and tissue-paper lungs. Walking from the train with my lunch curled up in my arm I was a wisp trying to be large enough to breathe. So far this week I have been filled to the brim via most of my orifices with barium or contrast fluid, sacrificed a bit of blood to lab vampires, had my guts and lungs viewed through various magic mirrors, had so very many strangers examine/poke/assault my private areas, and watched "Law & Order" and "Friends" re-runs for 5 hours while curled in the fetal position on an ER bed. It is Wednesday. Tomorrow is pre-op for butt surgery next Tuesday and then I refuse to do anything medical but take my antibiotics all weekend.

I used to be tired a lot. I worked hard, so it seemed reasonable to be immobile all evening after work and through most of the weekend. I fell victim to infection easily my whole life, and that often contributed to my fatigue. I did so much to get tired, though. Work was eight-to-ten hours a day, I was learning to surf, I walked everywhere. Now I wake up tired. Surgery was almost seven months ago, and there is just no bouncing back. The trauma of it has left cascading maladies in its wake and shone a light on Myelodysplastic Syndrome I didn't even know I had. My time is now marked by doctor visits and lab tests and meetings where I beg Social Security and DHS to help me keep my head above water just enough to get through my impending bone marrow transplant. Even without influenza for most of May or some mystery mass that make bowel evacuation about as fun as sitting on a wrought iron fencepost, I would be exhausted from my full-time job as an almost-cancer patient. I haven't even started chemo yet.

Today I went to DHS's Aging & Disability office to interview for something called presumptive Medicaid. Bronchitis from the flu made me winded and gave me a breathy, Rory Gilmore voice that I hope aided my cause. How can anyone deny medical insurance to a 3/4-sized Rory Gilmore who needs a bone marrow transplant? On my way to the MAX to go home, I picked up some tikka masala and a soda from my favorite food cart and I felt as though I might twirl away, into the air like a puff of smoke while I waited for my order. So small. So broken. So at the mercy of kind, research university doctors and faceless, judging state bureaucrats. I signed over my life laid bare to the bureaucrats today in hopes they would understand this uncommon diagnosis of mine and know that if I could work and pay for my own insurance I surely would. I'll work after my transplant, go to school and be some sort of person who makes enough money to pay for her own- and some random stranger's insurance if they will just help me pay for that new bone marrow that's not covered by my OHSU discount. My lunch was ten times my imagined size, and as I walked home from the train strangers in the street saw a folded newspaper, a can of orange Fanta, and a large container of Indian food being escorted into my building by a non-corporeal consciousness.

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