Day 4: Sunday

Feel pretty bad but wanted to let you know that I’m still of the living. 😎 [As we say in Burkina, “ça 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 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!!!

HiCY, Here I Come

First of all, this post is a toned-down version of the original because my father was not into some of my hilarious–albeit morbid–jokes. I mean, what is the meaning of life if not to make really distasteful jokes about death? I even had a place for nasara-byebye that fit perfectly, and when does that ever happen? Whatever, here’s me being temperate with the new and “improved” version:

As expected, my appointment with the PA was not very helpful, but I managed to get in with the doc about a week later, which was yesterday. I feel like I’m in a long-distance relationship with the guy: when I actually see him, he gives me plenty of time, and I come out of the appt content, more knowledgeable, and feeling better about life. Then the warm, fuzzy feelings fall away dramatically until I practically hate his guts by the next appt, which–to be fair–he warns me about after each visit. Guess I ought to give him credit for knowing his patients.

I’ve decided to do the HiCY, i.e. the worst chemo in existence, the nuclear bomb, the NFL of drugs, etc., etc. I’m sure it still doesn’t make sense to most of you why I would be taking the Immune Annihilator when no one suspects I have cancer. I’ll do my best to explain.

Despite the notion that chemo and cancer go together like yin and yang [going for a perfect balance analogy so don’t get upset if I just butchered an ancient Chinese symbol, geez, take it easy, LESION, DRUGS], chemo is also excellent for treating effed up autoimmune diseases. I just found the following term online, SADS, which stands for severe autoimmune disorders. [No, I’m obviously not pointing out the irony that the acronym is SAD.]

My BFF doctor told me he’s not sticking to “vasculitis” as the diagnosis anymore because the MRI and biopsy don’t point to any particular SAD, just that I must have a SAD (brain tissue, membrane, blood vessel, who really knows which one is SAD?). All I can say is he BEST be correct because if it turns out the lesion is actually some sort of lyme or infection, it’s gonna get ugly while they bombard me with tons and tons of antibiotics until my system reboots, comes back online, and starts gladiating.

The reason for the insane dose is that unlike with a tumor, for example, the drug needs to FULLY shut down my immune system, not just kill some bad cells. In order to achieve full-system shutdown, I need a really, really big dose of poison. We’re going for immune system level 0, as opposed to level 2 or something else that would compromise my system partially, but still not have the desired effect of eradicating the parts that have turned against me. I will have to be in the hospital for longer this time as the drug is administered over a four-day period. I’ll learn more when I meet with oncology, but I’m pretty sure they’ll want to discharge me ASAP since the best place to get an infection is in the hospital.

Obviously, I am less than thrilled with this whole idea; in fact, I flat out hate it passionately. But the truth is I’ve been less than half-living for 3.5 years, and I have to…you know what I’m going to say…GO BIG OR GO HOME!!

To end on a positive note, I have no intention of allowing anything too bad to happen to me. After all, I’m a hardCORPS (Peace Corps joke), tough BI^CH who has a LOT of social and political goals to achieve, the first one being the de-stigmitazation of chemo head, i.e. cueball head (although mine is most definitely not perfectly round and will look even cooler because of the giant shiv scar on my skull from my time in the pen otherwise known as Roosevelt hospital, but really who could tell the difference). I’ve already bought the requisite SPF and have an idea for an ad campaign: “Got dandruff? Try HiCy!”

In summary, I’m going into this treatment with three teams at the ready–neurology, oncology, and infectious disease–a main doc from Hopkins who’s dealt with many, many CNS patients; and several antivirals and antibiotics waiting for deployment. It won’t be fun, but I will survive! Now I will definitely need some more positive visualization, so maybe if you could join in and point yours at me, it will work like Captain Planet!