Friday, January 25, 2013

"Oh Blah Dee, Oh Blah Dah, Life Goes On"

A few sleepless nights I've had, attributable to the academic, Pathophysiology and the practical, Melanoma Man's deteriorating respiratory status. He stops at the doorway of the kitchen to catch his breath, doing the dishes results in intracostal and supraclavicular retractions. I check his pulse ox, just because sometimes the numbers help me confirm my view of reality. Standing up Pulse Ox=81, after sitting on the couch for 5 minutes, back up to his baseline of 92. He returned the oxygen concentrator 9 months ago. "I don't need that thing. It's too expensive."

 He looks grey and stricken and he chatters on and on: "Why haven't we had so and so over for dinner?" I am disgusted and incredulous. I would like to kick him in the shins and shake him and say "Because you have cancer." I am restrained and I follow my rule, which is to only use the F word at work. Instead I say something like: "Because our house looks like a dumpster," which makes him sad. It flys in the face of his view of what is happening, which is nothing, nothing at all. No problem.

MM called me around 2 p.m. to tell me that our new insurance company doesn't use Curascript to dispense the Vemurafenib. I thought I had this all taken care of, when I gave him the new card, contacted the insurance liaison, notified all the providers, notified the new insurance company of his diagnoses and medications on December 12, 2012. The two specialty pharmacies for my insurance company, Shands and ICORE can't get the drug. MM spends two hours on the phone. Walgreens specialty pharmacy ends up being the answer. First it must go to the review committee of course. Our last review committee took 8 weeks to decide. He runs out on Sunday.

"You know Laundry Thief, you have to be careful. People will start treating me like an invalid if they know I have cancer." He's told a few people now. Today I told another, DD, a pharmacist friend from work and church.

Sitting at my desk at work. That is all. I've done it all. There are no more emergencies or crises, no more calls I feel compelled to make. I've gotten us as far as I can and strangely I don't get upset. Because I know. I know the drug won't save him. It will give him something to do, an action to take. It buys a smidge of time. Without it we wouldn't have had this last Christmas.

 I get home to hear MM on the phone with my pharmacist friend DD: "No, no it's not that bad. I don't have any symptoms. The drugs are working. Laundry Thief and I got 15 years we weren't supposed to get."

The only part that's true is the fifteen years. We shouldn't have gotten them but we did and we got two great kids out of the deal. And in that vein I withdrew from graduate school today, so there will be a little time for me to spend with my two great kids and Melanoma Man before our time is up.

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