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!!!

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! 🎉🎈🎊👍🏻💥✨

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.”

Hair No More!

A lot of you have already seen my short haircut on Facebook, but I wanted to post it on here, too, for those of you who aren’t regular FB users:

short hair

This photo was taken after a very long session of meticulous cutting, razoring, blow-drying, straightening, and setting. In other words, if it weren’t for my amazing hairdresser, my hair would not have turned out this well. Why? Because I have bad hair. Trust me when I say my hair is NOT meant to be short.

Still don’t believe me? Below is a photo of me au naturel when I woke up this morning:

bad hair

Yah…so you all get the Sideshow Bob reference now? If it were October, I could pretend that Halloween was my favorite holiday and dress up as Bob every single day. Or even better, I could get some small eggs and be a tree with a large bird nest at the top. Pretty sure the eggs would stay put all night.

I applied about half a bottle of men’s hair gel because I thought the hold might be stronger, but it was absolutely terrible. Literally, the worst hair product I’ve ever used. First, strong hold “flexible control” is a bunch of bull; even with a headband, the volume kept rising like a soufflé on steroids and the strands kept popping out–boing!–like that gopher arcade game. Unfortunately, unlike in the game, I can’t exactly bash my head with a giant mallet, especially since slices of my brain are already all over the country, including the brain storage facility at Roosevelt Hospital. [Okay, it’s probably just a regular lab, but I imagine a giant room full of metal drawers that looks like a morgue, but instead of dead bodies, there are neatly filed blocks of brain stored in each compartment. When I call the lab to request more brain–which I’ve done about five times–the technician goes to the A’s and finds my tissue (which is stored in some jello-like substance) and cuts off a piece to be stained and sent to hospital X, which indubitably returns one more non-diagnostic analysis. Too much imagery? I hope no one’s currently suffering from tricuspid-valve regurgitation.]

Second, when I looked at the dried product up close, it looked as though I had dyed my hair salt-and-pepper because there were THAT many gel flakes. Seriously this stuff should be used for a shampoo commercial’s “before” photo of someone with dandruff/psoriasis/leprosy where the “after” shot of the model (my sister, Stephanie, obviously) showed the amazing results after only one use! [But I just learned that psoriasis and leprosy rarely coexist, so the commercial ought to be for one or the other. Fun fact of the night.]

Anyway, the point is I had my hair cut, which is a fine but very important distinction between “I cut my hair.” [My hairdresser asked me if I intended to “touch up” parts of it on my own. (She knows how I like to give myself impromptu, super-stylish trims that always turn out looking fab.)] If by some miracle my hair doesn’t fall out–which from what I understand is not a possibility, but hey, I have a special body–I’m gonna be knitting A LOT of hats.

Will post again tomorrow because I didn’t even mention what’s changed with my treatments and the timeline. (Are you in suspense?) The hair simply had to take precedence.

Authorization Granted

To my horror, the insurance authorization went through last Friday. The drug was first denied on Thursday–as expected–but it was successfully appealed by the end of the day Friday, as not-at-all expected. Man, I’ve been complaining about lack of healthcare efficiency for so long that this result is actually startling. And now I’m supposed to start this drug a week from today…?!

Could the echocardiogram cause a delay? Doubtful seeing as everything was reported as normal; so normal, in fact, that the writeup *actually* says that my tricuspid valve is “grossly normal.” Now as we all know, I’m no doctor, but…grossly normal? That the new cardiology lingo? And though I’m interpreting this adverb to mean extremely normal, is that word really necessary to insert? Like, her heart is SO EFFING NORMAL that we had to emphasize its normalcy by using a really emphatic word to stave off the potential of her thinking that when we say normal, we really mean special-normal or excellent-normal or better-than-most-normal? Because by definition the word normal when referring to a body part has varying degrees. Obviously.

But maybe I’m wrong and the interpretation is actually disgustingly normal since the next line reads: “There is trace tricuspid regurgitation.” Eww. That sounds nasty. Did you know your heart could regurgitate? Is this why I get such bad heartburn? Apparently it’s a thing, though, because it’s grossly normal. In my opinion, any heart-vom was caused by a reaction to the very uncomfortable probing and pushing of my entire left side. [Not a great test for females or dudes with man boobs.] Sonogram gel or not, the whole area felt bruised, so I bet my tricuspid wanted to express its distaste by throwing up a little. Gotta say, can’t really blame it.

I should be all set save for one potential wrench, the Lyme concern. If I’m doing this chemo, I damn well better be covered in case of “unexpected” flareups. And when I say covered, I mean COVERED–even if that means infusion needles coming out of my port and every cooperative vein like a giant porcupine. I’ve spoken with my infectious disease (and every other) doctor ad nauseum regarding this particular worry, so we’ve agreed to incorporate the IV Lyme drug into the treatment somehow. The ID doc thinks I should at least begin the 28-day course of Rocephin before getting the HiCY, but I’m not sure what that means in terms of ruining the efficacy of that (and maybe other?) antibiotic(s) after the chemo starts. I hope to learn a lot more during tomorrow’s appointment with oncology.