Lloyd is asleep. My last appointment found me, yet again, in the hands of a soon-to-graduate medical student at Johns Hopkins for the majority of my visit. Another young man, considering entering medical school in this field, was “riding along” for the day to see how he felt about it. He looked terrified. No matter how adjusted I get to Lloyd, it occasionally comes lurching to the front of my consciousness that it is simply a dramatically bad-sounding condition. Really, we should get a prize or something. Luckily, to both his and my relief, we learned quickly that the tube report had already come in—God bless them—and was a lovely, boring paragraph. After that, Dr. G came in for a chat and we discussed our Christmas plans. It is reassuring when your Neuro-Oncologist would rather discuss travel plans than tumors.
Christmas was fun and different for us this year. We went to Steamboat Springs, CO, for a vacation. It was strange to be by ourselves on Christmas for the first time, but the trip was wonderful. I ski well enough not to embarrass myself, Mark boards like a long, fast, lazy cat surfing down the mountain. He does frequently stop to wait and say ‘hello.’ My friend Jim met us for a day on the mountain with some of his friends, and it was fun to ski for the first time with a blind guy (it should go without saying that Jim is fun, anyway). He, too, sometimes waited for me.
Since November, I have been changing one of my two anti-seizure drugs. This was a long, slow process which culminated while I was in Steamboat. A few days later, while waiting for the lift one day with Mark, I suddenly felt strange. I stepped out of line and proceeded to have the most confusing, terrifying, completely new kind of “brain event.” No picture words here—this was confusion, panic, chills racing up my left side, nausea, and an inability to articulate what was happening. About a week later, it happened again at home. This was now not a one-time fluke, so Dr. R upped my dosage and I spent 6 weeks fighting with less-intense but still utterly horrible episodes, feeling lousy, and losing my ability to read and write. Again. Much worse than ever before, in fact. “It’s a great drug—once you get used to it.” All of the brain medications say this. “Just fight through the bad part and it will be worth it.” I’ve done this before. I couldn’t do it this time.
Last Friday I reached the end of the line. Within 10 minutes of my e-mail to Dr. R telling him I could no longer perform my job, I had a response with a new drug. I’ve got a month of tapering off & onto my next trial. So far, I only take a half dose at night of the new stuff. My mind races uncontrollably and I wake up every two hours like clockwork. But no episodes since last Thursday! Please do me two favors, whoever may be reading this self-pitying BLOG of a blog:
1) Forgive me. I am having a rough patch and cannot seem to help this whining. It will pass.
2) Wish me luck on my new drug. I know this isn’t growing brain cancer, but these symptoms are bitter. Not being able to read, sleep, or remember anything? Come on.
Aside from all that? Things are great. Mark is great, our family is great. My sister’s second baby is due in May. I would really like to be able to spell his/her name when they get here :) Here’s hoping.
Love, -Kristina
