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’₯✨

Day 1: Thursday

In the ward, I’m having such a blast.

But why, oh why, won’t the chemo come fast?

Hydration now and more ’til nine,

To protect the bladder from malicious enzymes.

But another logjam makes ten-thirty the hour.

Impatience–no virtue–only makes me more sour.

So no updates at all, very sorry to say,

At least bad effects are still holding at bay.

Dedicated to Neta and her visit to my glorious 11th-floor bachelorette pad overlooking downtown Dallas. Amenities include but are not limited to multiple hand-washing stations; several “call don’t fall” pull strings; fancy shower seat; bed with sweet light, TV, and position controls; two hangers; and an actual asshat.

Treatment Plan

Alrighty, now that it’s no longer Saturday night, we can get into the way less fun but also less frivolous content.

Surprise, I’ve already started my treatment! Not the chemo, just the antibiotics. I’ve finished Day 4 of IV Rocephin–a drug that can be administered at home through an infusion service–which is what we decided to use as my 4th “prophylactic” of sorts. I was having regular panic attacks regarding the could-be-lyme, so in my usual fashion, I browbeat the doctors into doing something about it.

rocephin ball

Rocephin ball for home infusion via my port

[One of the hardest parts of the last 3.5 years has been coordinating my own care; the level of self-advocacy necessary to get anything done is exhausting. It’s essentially a job in itself, and I don’t know how other sick people manage it plus their symptoms. (As much as I want to launch into a political discussion regarding healthcare, I don’t have the energy, so all I’ll say is the whole system is nuts.) Luckily, I’m no wallflower, so I’ve been extremely active with regards to making my opinions known. And known. And known again. In addition, my parents have been super, super supportive–Happy Father’s Day, Dad!–which is a HUGE advantage that I do not take for granted. I know not all parents would be happy to house their adult-child for so long, and our managing for this many years without killing each other is a testament to their love and patience. (I’m not taking credit because I explode really easily. It’s the drugs like Keppra. Or the lesion. Or the now black-boxed malaria medicine I was on for over two years. Or all of the above. Regardless, my anger issues are definitely not my fault since nothing is ever my fault anymore. I have a brain disease.) The rest of my family and friends have made the whole experience so much more tolerable, too, and I don’t take that for granted either. I APPRECIATE YOU!]

Back to the doctors, in this particular moment of hysteria, I emailed, called, and messaged so many times that I got Infectious Disease and Oncology talking to and coordinating with each other (gasp!), and they agreed that starting the antibiotic a week before the chemo would a) deal with any lyme concerns, and b) calm me the f*** down and get me off their backs. I’m just speculating about part b, but it did the trick: dealing with the situation in advance as opposed to waiting for some infection to crop up was an immense relief. Then the appointment with Oncology was totally relaxed and no-big-deal, which made me become even more zen. I guess the whole thing sounds a lot worse coming from a doctor who doesn’t administer chemo–and who either doesn’t really know how it is or who might exaggerate some aspects to prepare you for the worst case–than from the people who do it daily. The nurse even told me my immune system would likely bounce back in the first 4- to 6-weeks, and though my immunity would get very low, it wouldn’t reach 0! (Let’s hope she’s right.) So for anyone who was as nervous as I was, I think the takeaway is the HiCy won’t be fun, but the experience should be much less scary than initially thought, especially with my preventive lyme-murdering drug taking care of any herxing before I admit to the hospital (hopefully).

In order to get in a full week of Rocephin, I moved the hospitalization back two days to this Thursday, 6/25 (Happy Early Birthday, Pam!). The nurse told me I have to be given six hours worth of hydration before starting the chemo–Cytoxan badly affects the bladder–so I’ll probably be inpatient until Monday, unless I get evicted from the ward for bad behavior, which would never happen because I’m so perfectly well-behaved in hospitals always, never a scowl or a barked reply. (Despite the hospital being a new, fancy, and high-tech facility, a hospital is a hospital is a hospital, and patients are not allowed to drug themselves for liability reasons. This does not create a great nurse-patient relationship, especially when the patient has problems relinquishing control and practically gives herself seizures when her drugs are not with her. Of course, I would never be one of those patients who gets hostile and combative when her drugs are not delivered on time, particularly the seizure meds, but I’m sure someone out there maybe could be.)

After the chemo is given over the course of four days, I’ll go home and continue with the Rocephin for the remainder of the 28 days (assumption being we’re dealing with neuro lyme just in case). Then, who knows? I’m not yet overly apprehensive about the side effects–mostly because my body reacted so strangely to the first chemo drug, and by strangely, I mean didn’t react at all–but that very well may change once I’m in the hospital.

For the time being, as Mumsy always says, “One day at a time.”