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! 🎉🎈🎊👍🏻💥✨

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.”

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!