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 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.”