helping

Paperwork intimidates me. Filling out forms, keeping track of dates, following nitpicky instructions – it all makes my eyes blur. When reading something technical and detailed, I lose the ability to focus my eyes, a curtain drops in the space between eyeball and brain and I have to repeatedly start over. I am precisely the person you could swindle with a contract. I get hung up on the questions which are always too straightforward considering that the circumstances never are. “Were you unemployed before your diagnosis?” Yes and no; I went in to work on the day I was diagnosed because I had work to do, but I was not paid because the last day of the school year was three days prior. I had work in the Fall, but I did not work during the summer and filed for unemployment two weeks after the date of my diagnosis. So was I, or wasn’t I? No? I think the answer is no.

I try to spend some of my days looking for assistance. It is a nightmare. I cannot tell you the number of sites I have visited for various patient advocacy, co-payment assistance, debt-relief, and direct bill-payment support agencies, painstakingly reading their qualification guidelines, only to be told that they are all presently out of funds for breast cancer patients. I have learned that it is the practice of these agencies to compartmentalize their funding, so that if I had bladder cancer or lymphoma instead, I might be eligible for funds; those accounts have not been tapped by patients more savvy or proactive than myself. Or, more accurately, those funds are larger and are rightly set aside for the targets of deadlier diseases.

Jason tells me not to worry about the money. He tells me all the time because I worry about it all the time. But it gets to me. A few months back this cancer popped up and I handed him a heavy burden – to support us both financially, to keep track of our finances and pay the insurance and hospital bills as they came, to be sturdy when I was not, to waylay his educational plans – and it is a burden he has borne admirably, carried as though it were a lighter load than it really is. Cancer was like the abrupt stop of our train engine, each car hitting the one before it with the heavy thud of its own inertia stopped. Meanwhile I have navigated the appointments; kept track of my care; read about cancer and nutrition and side-effects and doctors and surgeries; gotten depressed and spent more than a few listless days wondering what the fuck happened to my life, feeling sorry for myself on the sofa over chemotherapy studies and statistics and episodes of Northern Exposure. I burden him further by seeking praise or assurance whenever I accomplish some minor task: “I vacuumed and paid the water bill out of my savings account! I took out the trash and the recycling!” as though there is something miraculous about accomplishing tasks, in the plural. They are declarations always met with happy encouragement, and tempered by an internal, “congratufuckinglations.” I am a regular Donna Reed. That being the circumstance, it hits me hard when I try to be proactive, to find a way to bear the burden of the cost load, and I can’t do it. The frustration is immense. The train is long, the collisions keep coming.

There are other days, like Tuesday where nothing happens but I still manage to spend the entire day on the phone going back and forth about prescriptions and who has which form and why U of M staff failed yet again to properly handle very important paperwork with a very important deadline. Suddenly a day has passed and the only thing I’ve done is get one prescription ordered and see that someone will call me back within the week about more tests. How, I wonder daily, does anyone do this alone?

Ah, cancer, my personal, wretched little earthquake.

Tomorrow I work. I haven’t been so excited since we were vacation planning.