Day 4: Sunday

Feel pretty bad but wanted to let you know that I’m still of the living. 😎 [As we say in Burkina, “Γ§a va aller,” which is roughly equivalent to “this too shall pass.”] The chemo has already started today, so I’m looking forward to getting some sleep tonight.

Thanks for all your messages of love and support–hope to be home in bed by this time tomorrow!

Day 3: Saturday

Not being facetious, really great news: I haven’t vomited or seized once today (so far, knock on wood)! I’m pretty sure the seizures were caused by the first HiCy infusion being so late Thursday night/Friday morning–which resulted in basically no sleep–plus my not being allowed to drug myself here (i.e., drugs not always brought on time or not same strength I use at home) plus neither my lesion nor my sinuses taking kindly to the Cytoxan. The lesion hurting like crazy wasn’t bizarre, but exploding sinuses? The doctor told us yesterday that severe sinus pain was actually pretty common. Weird. [Last night I made sure to take care of those two issues by ordering preemptive Ativan and Benadryl, which I did again just now.]

I’m actually not really sure what caused the nausea. (I know it seems obvious, but I was okay for several hours after the first infusion and then all day today after the second one. Possibly had something to do with low levels of potassium or sodium? Our Peace Corps oral rehydration salts (ORS) had a lot of sugar and some salt, but I never learned personally what happened when sodium levels got too low…a good thing, I suspect. Regardless, I’m drinking Gatorade now.)

I have a wonderful nurse for the rest of the weekend day-shift who took charge yesterday and got me feeling much better. Today she madeΒ great on her promise to let me rest, so I was disturbed very little. Either there or no techs–people who take vitals every five seconds–on Saturdays & Sundays or she decided to take over their duties herself. She also managed to whip the pharmacy into shape so that my chemo can start at eight tonight, which would be a miracle. When I win the Publisher’s Clearinghouse Sweepstakes, I’m hiring her as my personal medical consultant, combatant, and coordinator.

[There were, however, some funny visits in the morning: a few neurologists and PTs who were worried about the seizures came by to check me out and seemed a bit confused by my overnight transformation–“Wait, so youΒ can speak coherently? And you can walk on your own?” They seemed satisfied quickly enough when I was able to cobble together more than a few intelligible words. (Yesterday, I kept trying to tell my dad that I needed more Keppra, but I couldn’t get the words out, so I shouted things like “mo’ wepper” until he finally got it. So you see, part of the reason I hate not being able to control my drugs is that I hate allowing the seizures to crawl up to my brain and render me incomprehensible: I can see the word in my mind, but it won’t come out of my mouth correctly, no matter the level of concentration. It’s a pretty awful feeling.)]

In the meantime, I’m just waiting for infusion no. 3–hopefully it’ll go like the 2nd one because I do not ever want to relive the aftermath of the first one again. Since I’ve had no extracurricular medical activities today, I had a chance to snap a photo of the Dallas skyline from my window. Nice view, eh?

DowntownDallas.jpg

Fingers crossed for tonight–almost more than halfway through!!!

Day 2: Friday

If you sent me a message earlier and I didn’t respond, it’s because today was by far the worst day I’ve had in a hospital.

I seized three times, vomited about five (including once all over myself and my bed), and am now an official fall risk with yellow socks. I’m exhausted and my head has been exploding (some sort of sinus reaction) since the infusion last night.

I’ve requested an extra 500 mg of Keppra to bring the total to 4000 mg. Let’s hope tonight goes better–the nurse is running interference this time so I can actually sleep.

Random shoutout: hurray for Justice Kennedy! πŸŽ‰πŸŽˆπŸŽŠπŸ‘πŸ»πŸ’₯✨