And Then There Were None

…that TBC should’ve included another ellipsis or two, huh? Sorry for falling off the earth. I’ve actually spent the last three months traveling the netherworld with Dante, bouncing back and forth between his various circles of Hell. Not fun; repent while you can.

Worst moments happened shortly after my last post and involved several transfusions—two platelets and a sack of blood to be exact—and the screaming deaths of my angry, vindictive hair follicles. My white blood counts did end up dropping to 0 for several weeks and my platelets were down to to 4k. [That is VERY low. Depending on whom you ask, normal levels range between 150k–350k.]

Regarding the transfusions, I’ve learned a lot about typing and the like, so if you’re really desperate and dare to live on the wild side, I got you covered unless you’re O-. If you’re O-, you can give to everyone but only take from other O-‘s. All give, no take—blood is just as unfair as humans!

Fortunately you only need exact blood typing for RBC transfusions; there’s more flexibility with the platelets. Now I bet you’re thinking, “Crap, I don’t even know my blood type, what if I need some sort of transfusion??” Not to fret, you’re not alone. In a super scientific poll I conducted, no one could remember her blood type. Plus the hospital retypes you EVERY SINGLE TIME, so you could forget and forget and forget forever without being given the wrong blood. And nowadays the blood is screened, fried, zapped, and microwaved before it’s allowed in your body, so no need to worry about contracting a *known* disease [ha ha]. Glad I could assuage your sudden concern.

Now, about the hair: I wasn’t allowed to do anything that could potentially cause me to bleed, so razors were out until my platelet count rose. No problem, the hair just falls out, right? Wrong. Mine flat out refused to cooperate. Remember that short haircut I got right before starting? Nope! Not nearly short enough; I should have shaved my head completely, but vanity and the fact that I hadn’t lost it after the other three treatments (with the different drug) clouded my judgment. Apparently it doesn’t happen to everyone—not even the people in BMT [bone marrow transplant, i.e., PAs who should know everything about chemotherapy] knew what I was talking about—but a lot of people going through chemo have horrible dying-hair-follicle reactions. [I had to search online forums. Other patients tend to be so much more helpful than doctors.]

My individual strands are not thick, but cumulatively I have a ton of hair with a ton of tightly-packIMG_1896ed follicles. When the follicles got together for their last-hurrah bender of a death party, the pain became so bad that I couldn’t lean my head against a pillow without extreme discomfort. (Never in a million years could I have dreamed up this consequence.) Of course, my platelet levels stayed down for long enough that I wasn’t able to remove the offending strands with any great speed. Instead, I was forced to wake up every morning with a zillion tiny hairs in my hats and then see a zillion times a zillion still on my head.

IMG_1904The forums suggested a multitude of products to gain relief: 100% pure emu oil, raw African shea butter, a variety of numbing creams. I tried them all and was about to go for the pure Aloe Vera butter until I decided the creams weren’t doing anything other than greasing up my head and hats. Finally I stumbled upon the best idea of all, lint rollers! I was sick of standing by helplessly, so I took those lint rollers in hand and furiously went to town. [I even made “how to” videos to send my sisters, but they cut off midway through–tragic loss.] No idea how many sheets I had to use, but slowly (very slowly), the hair started to disappear from my head and leave super attractive tufts that hadn’t yet died. At my next appointment, my PA tooIMG_2011k one look at my head and started to get mad that I’d so flagrantly disobeyed him until I smugly told him the secret. Needless to say, the entire department thinks I’m totally insane (no argument here). My dad and I eventually took his electric razor to my head, and I proudly strutted around bald for a few weeks. Even though my blood levels continue to fluctuate (3 months out?!), the hair has started to grow back again, still somewhat patchily but thankfully not painfully!

All that background is the lead up to today, the day of my MRI and some supposed answers (which explains why I’m still awake at this hour). Yes, the title of this post is a reference to the famous Agatha Christie murder mystery, but only in title and certainly not in plot. [I read it too long ago, but the premise is one party guest being picked off after another. Also, it seems Dame Agatha was a downright racist as I believe the original title was changed not once, but twice, for insulting two different ethnic groups, something I most definitely do not condone. (At least someone had the sense to change the name somewhere along the way.)] I just like the dramatic feel of the title and am (superficially, no murders planned) referring to it since I have zero days left to employ my ignore and avoid tactics.

I offer a prize to anyone who takes the MRI in my stead! Then we can just scream MIRACLE! and move on with our lives. But seriously, if you read this post before 14:30 CST on 9/29/15, please send some positive vibes my way!!

The Aftermath: Sucker Punches and Other Side Effects

I’ve been out of the joint for almost a week and am enjoying my freedom! Translation: I’m lying in bed without an awkward IV pole to drag around and drugging myself on my own terms. The joys of liberation are relative.

The past few days have been unpredictable symptom-wise. I’ve experienced the usual suspects—nausea, upset stomach, exhaustion, breathlessness, weakness, body aches—but also some very unexpected reactions. Last Tuesday, for example, I woke up with extreme lower back pain, as though I’d been boxing with Tyson and he sucker-punched me in both kidneys multiple times.

Mo, my attack cat--look at that precious gleam in his eyes!

Mo, my attack cat—look at that precious gleam in his eyes!

(At first I wrote Ali, but then I decided to change to the ear-biting rapist because in my uneducated opinion Tyson would be way more likely to throw illegal kidney punches. And to further my digression, I love Ali. I named my African bush cat Mo in his honor after Mo punched me in the face the first night I had him, but I thought it best never to tell my Burkinabé friends his full name in case they were insulted. After all, it would be pretty disrespectful to name a cat Jesus. Then again, I don’t know any famous athletes or really anyone named Jesus other than the main man, Jesús Marías and other Spanish derivations aside. One to ponder.)

Back to sucker punches: the pain was so sharp that I convinced myself I was having acute renal failure and was already chilling on Death’s porch with a glass of sweet tea and some biscuits. The clinic wasn’t yet open, so I called the emergency number, which resulted in a short conversation with the on-call doctor whom I also managed to convince that I was 75% dead. [This influential quality has been very useful at times; not in this particular situation.] He told me either to go to the ER or wait the 20 or 30 minutes for the clinic to open. Obviously, I would have chosen death over another hospital trip, so I opted for the latter.

When the clinic opened, I left an urgent message for the PA (physician’s assistant) to get back to me ASAP. Of course, he wasn’t there that day, so I decided once again that death was preferable to clinic visits two days in a row. [I had pre-scheduled appointments with my PA for Wednesday.] At this point, my parents had rubbed Icy Hot all over my back and I was wearing Thermacare wraps. It was quite odd that my kidneys were recovering so quickly from muscular treatments. It produced a calming effect. Once I learned of the PA’s absence, I started backpedaling hard—“I think the kidneys are lower anyway” and “This level of joint and neck pain seems totally normal”—until I finally un-convinced the clinician that I needed to check in with her. She repeated several times with concern that I could go in whenever, and I told her the next day would be just fine. Man, these people are so dramatic.

The next day, I asked all pertinent questions and found out my symptoms were pretty much normal. The PA lectured me about the importance of seeing other PA’s when necessary. I told him no one else understood me. He responded that he didn’t think anyone understood me at all. My parents concurred. I felt much better.

Other than that delightful experience, I haven’t feared for my life. I feel pretty lousy in a to-be-expected way, particularly since my latest blood test showed that my white blood cells were down to 0.1. They could very well be at 0 by tomorrow.

I have a lot more to write, but I’m getting really tired. Plus, shorter posts are better for attention spans these days. So until next time…get excited for #curlyhairproblems…TBC

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.”