For those just tuning in, I am living with cancer: Adenoid Cystic Carcinoma. Here’s the thing about my cancer: I don’t like talking about it. Maybe it’s like speaking the name of the Devil, and by acknowledging it, I give it more power. Not that I don’t acknowledge it; I go to my appointments and take my medicines when I need them. I moan about having aches because they cut open my neck, sliced away bits of my spine (to get at the tumor), then fused it back together with screws and broken bits of my own bone. But I don’t want to be that person who talks all heavy about cancer awareness and how there’s no funding for research about my particular cancer (well, there isn’t). Lots of people already do that, and cancer isn’t what I’m about. It’s just a small (malignant) piece of me.
I’m just trying to get on with my life, such as it is, and somehow pay off the mounting medical bills (yes, I do have insurance… just wait until you have an actual major medical event. You’ll see…, make it through each work day even when I’m having a bad pain day, and not think too much about the metastatic tumors in my lungs.
Add to that, when we were first learning that my cancer had come back (I was first diagnosed in 2001), I felt like I was explaining it again and again to various people in my life. And I came to realize something: some people care, and others simply don’t – or they don’t care enough to listen to details and would much prefer getting back to the subject of themselves. And you learn pretty fast which is which among your friends and family. It’s been a rough ride, but I’m improving.
I didn’t have pain for most of the summer, but now that it’s colder, I feel the aches more. It’s not entirely unlike the pain I had just over a year ago when I was squirming in the MRI machine as they tried to figure out why the hell I was in so much pain at all (and thus when they found the tumor attached to my Cervical-7 nerve root and invading my spinal column). The difference, however… the blessed wonderful difference is that analgesics and muscle relaxers actually do something for the pain now. I can safely take 2 ibuprofen and find my discomfort abating within 20 minutes. That tells me it’s inflammation, which is treatable. Straight up “tumor-is-eating-my-nerves-for-lunch pain” is not treatable. Not even Vicodin will touch it. (Trust me, I know.)
I won’t go into my complaints of how much this illness costs, financially. I think it’s pretty obvious (or maybe it isn’t?) that even with a passable health insurance plan, one’s outlay is still quite a lot of dough. Puts into perspective the dream people have about quitting the day job to be full-time writers. Sure, if you have a spouse who can carry you, great. I have a spouse, but he’s been struggling to find work for quite a long time now (same as millions of others effected by the economy). And yet… I still have these romantic notions of… fuck the Man, fuck the System.
And so I drink Essiac Tea and do Yoga and be thankful I have insurance now, but don’t hold any illusions that my job will be here forever either. We must be brave about these things. I do hope that the New Year will bring new opportunities for us, so we can get these medical bills paid down, and stop draining our savings. In the meantime, I seek ways to a) attack the tumors in the lungs and b) make sure I don’t die from any more spreading of the disease.