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 made 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 you 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!!!

Update on Timing

I’ve tentatively scheduled my treatment to begin on Tuesday, June 23rd.

Not sure how accurate this date is because it all depends on insurance pre-authorization. Most likely the treatment will get rejected first since a) there’s no real diagnosis, and b) whichever diagnosis code is used has a different, standard treatment. The doctor will have to appeal, and it will be a minor miracle if all the red tape is worked through in less than three weeks.

In the meantime, I have to get a cardio exam and preliminary blood tests to ensure I don’t go into the treatment with a dysfunctional ticker or latent infections…and yes, Lyme disease is infectious, and yes, it’s been discussed with umpteen doctors, none of whom actually knows what he’s talking about since Lyme and lyme are such pernicious little spirochetes. [And therein lies the rub and explains why I’m rather hesitant to undergo this sort of treatment when the only tests to ever come back positive have been various forms of lyme. Yee-haw!] So, medical community, I am (very) reluctantly putting all my faith in you and your “false” positives!

I’ll put up some more countdown dates for the various upcoming appointments, but don’t be surprised by changes.

I’m also toying with the idea of having a hair cutting party for all the Dallasites who have always wanted to butcher someone’s hair without the ensuing friendship fallout. Since I’m not interested in finding chunks of hair on the pillow or in the shower, I’m going to cut my hair really short anyway–why not have a little fun with it? So if you’d be into cutting some crazy topiary hair patterns or think giving someone a mohawk would be fun, leave a comment below!