Category: The Body Electric
My cancer journey
My brother and I make fun of how everything is described as a “journey.” He calls and wants to know how my “cancer journey” is going.
Today my cancer journey has taken an unexpected turn. The drug they keep trying to get me to take for nausea has caused me to have such blurry vision, I can’t see. (Also a sore throat and congestion, which I could live with because it really did help with the nausea, but blurry vision is a no-go. It’s taken me close to a half-hour to write this short post.)
But that’s nothing compared to this. For those of you who are stealth pray-ers or “sending good vibes” people, I have someone who can use it. A 15-year-old girl whose family recently moved here to be close to her epilepsy medical team has just had her world turned on its head with a diagnosis of Batten disease, a particularly cruel and so far, inevitably fatal illness. She will suffer increasing mental impairment, worsening seizures, and progressive loss of sight and motor skills.
Researchers are racing to find any therapeutics that can stop the progression. As it stands now, children with Batten disease become blind, bedridden and demented.
So if you pray, pray for Audrey and for the scientists who are working on a cure. Pray for her support and comfort for her family, and every single family that’s dealing with this. Meet Christiane.
FYI
Don’t take this personally, because it doesn’t apply to any of you. But whenever a new research finding for pancreatic cancer comes out, I get at least 15 people telling me I “need” to tell my doctor to look into it. (As if I hadn’t already seen it.) Then I have to explain that clinical trials only include mid- to late-stage disease (which I don’t have yet).
Penn is one of the major cancer research centers in the world, and if one of the trials applied to me, I’m pretty sure my doctor would tell me. There’s a lot of mental labor that goes into me explaining this in a way that doesn’t hurt anyone’s feelings. I realize people just want to help, and I appreciate it, but I’ve been doing research for a living for several decades now.
CAT scan day
Yesterday I had an appointment for another scan. My appointment was for one, they told me to be there at noon. I finally got the scan at three.
This will be my life for the foreseeable future. Waiting, waiting, waiting. They wheeled in a woman on a gurney whose face looked absolutely blank, like she’d given up and didn’t know why she was there.
Last night I had a dream. Someone I knew was in my house, someone who wasn’t supposed to be there. He dove at me but I sidestepped him. He lunged at me, closer –I opened my mouth to scream, but nothing came out. I took a deep breath and exhaled forcefully, saying “Help!
When I woke up, my throat was sore. I must have screamed in my sleep.
Isn’t it ironic
Huh
Tales of the broken back
Got the results of the MRI of my broken vertebrae. Guess what? I’ve lost 80% of the height in that one. No wonder I’m in so much pain.
So I have to meet with the neurosurgeon ASAP, probably this week, decide on whether it’s unstable (my guess is yes)and make a plan about how to handle it in light of The Tumor. The cancer surgeon wants to operate as soon as we can.
I feel like my head is going to explode.
The cancer labyrinth
As it turns out, it’s unlikely that I can get surgery because my back is so fucked up. See that third vertebra down, the one that looks like a misshapen Pac Man eating a peanut? That’s what’s left of my L-1.
In the cancer lottery, that means I have most likely won a trip to Radiation Land. I like the radiation oncologist, I just wasn’t expecting to meet him.
America!
Last week, the cancer surgeon prescribed Tramadol pain pills for my fractured vertebrae, but the CVS told me they would only give me three weeks’ worth without a prior authorization from the doctor. Is this a CVS thing, or does it happen everywhere?
Anyway, I cut them in half because I’m sensitive to most drugs. Boy, was I right! It was the first time in four months that I wasn’t in constant pain (it even got rid of the arthritis pain in my thumbs) BUT I was high as proverbial kite. Or drone. So I can be pain-free, but won’t have my functional wits about me.
So I decided to cut the halves in half again. (Not easy, because the pills are oval.) They took the edge off the pain, but I still felt woozy. I decided I would not take them today.
But here’s the weird thing. Everything hurts even more without them. It’s only been three days. Are the pills engineered to keep me taking them? I know that happens with oxycontin. Oh well.