You may have wondered where I was for the past few days. On Monday, I had symptoms that were very much like a stroke, but weren’t a stroke, after my chemo. An ambulance ride was involved. Two hospitals were involved, as were more doctors than I can count.
I finally walked out last night. I made the resident on call cry. I am exhausted. But I did not have a stroke.
I waited for an Uber for over an hour last night, but I’m finally home.
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.
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.
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.
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.
I switched hospitals. Too tired to go into it all, but I’m glad I did it. Meanwhile, my new team is moving heaven and earth to get me scheduled for back surgery with a neurosurgeon. My only complaint (and you knew I’d have one) is that going here is like entering a large airport and it’s a bit overwhelming. But the quality of care makes up for it.
(Some trivia: The hospital is built on the site of the old Pennsylvania Convention Center, where I graduated high school in 1972. I saw the Who open for Herman’s Hermits here! The Beatles played here on their first American tour. My brother was allowed to go, I wasn’t.)
The new pancreas surgeon is one of the top guys in the country and has done hundreds of Whipple surgeries. It is probably the single most complicated surgery there is, I don’t want a talented amateur at the wheel.
