Later this morning, after having spent a couple of hours sitting in a comfy chair hooked up to a centrifuge for the apheresis procedure, I will receive my second full dose of Ocrevus. There is nothing remarkable about this, other than the fact that I don’t remember how I am going to feel for the remainder of the weekend. This is ironic because there was a time when I knew exactly how the weekend was going to play out, and planned accordingly.
From 2009 through last September, a span of over eight years, getting a Friday infusion was a monthly ritual. The drugs were different, but the routine was the same: get hooked up for the apheresis, sit for an hour and a half or so, then have the sewing needle in the crook of my elbow in one arm removed while the remaining smaller needle in the other arm would be hooked up to an IV bag. Then I’d sit another couple of hours, napping for most of the time, while the drugs were administered.
When it was over, I’d drive home and settle in for the weekend. Friday evenings were spent lounging as a heavy fatigue set in. Other than dealing with periodic hiccups and feeling very warm on Saturday, I putter around the house or do a few errands that weren’t too taxing, just to make myself feel useful.
Sunday was a lost day, when the brunt of the chemo’s side effects hit. My head felt like mush, crushing fatigue would set in and I’d spend all day in bed, either watching television or nodding off. One of the first posts I wrote for this blog described in detail what those Sunday’s felt like. Refer to the chemo drug paragraph of that post if you want to refresh your memories.
The worst thing about this regiment was that it killed one weekend a month. This may not sound like a big deal, but trust me, it was. An every four or five week commitment doesn’t sound bad on the surface, but these infusion weekends often fell at an inopportune time, especially during the holiday seasons.
What appealed to me about Ocrevus, besides the fact it was supposedly designed to help those of us with the progressive form of MS, was the infusions only occurred every six months. The idea or losing two weekends a year instead of twelve sounded like Nirvana. If I’m being completely honest, that fact by itself swayed me to make the switch.
I still get the plasma transfers every month, so it isn’t like I’m appointment free. But those only last an hour and a half and, other than being very tired the evening after the treatment, there are no side effects, and I am as good as new the following day. I have more freedom because I don’t have to worry about having to reschedule a weekend event or the infusion itself because a personal conflict. I also feel less of a burden to K, who had to plan her weekends around an absentee husband.
I’m a little more apprehensive about the getting these infusions than I used to be, and I attribute that to not remembering what tomorrow and Sunday will be like. I have a hard time remembering what I ate for dinner yesterday, so trying to remember what the weekend following an infusion I had six months ago was like is futile
I believe today and tomorrow will be fairly benign, and that Sunday will suck, but what will the degree of suckiness be? Will it be a shutdown Sunday where I don’t leave the bedroom except to go pee, or will it be worse? The first few times I had my original infusions, I could barely open my eyes, my head felt like it weighed a thousand pounds, and when I was mobile, I felt like I was walking in quicksand.
Will it be that way again on Sunday? Will I have a better experience because my body isn’t saturated with the stuff? Or will it be worse because my body isn’t used to having these heavy duty meds infused?
This leads to the question of whether taking these meds is worthwhile. I have never felt remarkably better after the infusions, and while I assume these meds are helping my condition, I can’t say for a fact that they are. What I do know is my progression has proceeded at a snail’s pace for the past eleven years, but the big question is if that is because of pharmacology, or is it simply the nature of my MS beast, and taking or not taking meds doesn’t influence it one bit.
One of these days I’ll either learn the answer to that question, or simply get tired of taking this stuff and get off the pharmacology treadmill. For now I will stay the course, but maybe I should take notes about how I felt this weekend that I can refer to next March, when the next infusion is due.
That way I will know what to expect instead of guessing what it is going to be like. The more anxiety I can eliminate from this equation, the better.