I was a compliant kid growing up. Eager to please and never wanting to incur the wrath and disappointment of my parents, I toed the line through my high school years in terms of alcohol and recreational drugs. Part of this was because I went to a private school and lost connection with my local peers, and part of it was because I was living at home. While I was a pretty good actor, I knew I wouldn’t be able to hide the fact I might be stoned or drunk, and it wasn’t worth dealing with the fallout.
That all changed once I went to college though, and I was free from supervision and judgement. I never went crazy, and always steered away from the hallucinogenics or anything I considered hard-core because they scared me, but did dabble with pretty much everything else, primarily out of curiosity to see what they felt like. None really stuck besides MJ for a variety of reasons, but even that died a slow death once my career started in earnest. My “drug use” resurfaced almost thirty years later in 2010 when I started getting IV meds for my MS.
I had no idea or concern about how these meds would make me feel, partly because I trusted my doctor and partly because I have always been curious about how pharmaceuticals impact one’s body. It didn’t take long however for me to realize that what I dabbled with in my twenties were minor league compared to the kinds of meds dispensed at hospitals or pharmacies.
First there was the steroids. My maiden experience with these were over a three day period at home when a visiting nurse came to the house to hook me up and explain what to do over the next few days.
The initial impact was immediate and somewhat miraculous. Compared to where I am today, the leg at that time was a lot more functional, and probably eighty percent stronger. I didn’t have any major balance issues, but I could not walk without a limp, my foot dragged and I could not run or jog. Within twenty four hours of the day one infusion, I noticed an immediate improvement, and after day three I was walking normally. No limp, no dragging foot, and I could jog easily. It was as if the MS magically disappeared. I was astounded! Unfortunately, this respite lasted about ten days before the symptoms started coming back.
Be that as it may, within twenty-four hours of the last infusion, the side effects came. I was flushed and felt warm, and my face looked like I had been in the sun all day. Plus I was ravenous, and no amount of food I stuffed down my throat would satisfy the craving. I was uncomfortably bloated and felt like beached whale. I woke up the next day greeted by a case of chronic hiccups that lasted for three entire days, and I literally mean morning noon and night. I would occasionally get a respite of twenty minutes or so, but that was it. Sleep was next to impossible. It was once of the worst experiences of my life.
I’ve never done the three day course of treatment since, even though I have always had that option, because of that one experience. I continue to get a smaller dose of steroids every time I have the plasma transfer, but the hiccups that result are confined to one day and they are episodic, so I can deal with that. If they get really bad, and they usually do at night the day after the treatment, a healthy dose of the medical MJ stops them in their tracks.
Then there were the chemo meds. Every month without fail for about seven or eight years, I received an infusion of 600mg of Cytoxan. I jokingly called them “flu shots” but was warned that this was no flu shot, and I would be wise to take a day or two off after the infusion to rest.
I received the infusions on Friday. I would feel like I was coming down with the flu by Friday night, and I was absolutely useless on Saturday and Sunday. I believe one for the first posts I wrote, entitled Zombie Land, described its effects in addition to all the other treatments and procedures I had put myself through up until then, so I won’t rehash history.
But I had no energy whatsoever. I couldn’t even lift my head off the pillow, and walking to the bathroom felt like walking though a vat of liquid caramel. Speaking took a monumental effort as did anything else remotely physical. And the dreams! They were intense, and while the sex dreams were fun, many of the others were bizarre bordering on hallucinogenic.
I vividly remember having a dream where I was in my bedroom, feeling tired, sweaty and aware. The room would start spinning for a minute or two, then stopped. Once that occurred, I could feel my body levitate off the bed. I couldn’t open my eyes because I didn’t have the energy, but there was no doubt I was hanging in mid air, floating as if I were on a cloud. I hovered that way for a few minutes before I felt myself being lowered and coming into contact with the mattress and pillows.
This “dream” happened every single Sunday morning of my infusion weekends for years, before becoming a once in a while thing. It felt so real because of the awareness I had when I was in the middle of it. I could feel the bedsheets draping over my body, cascading downward like a loose shroud. I heard the same household sounds that I would if I were awake. Everything I felt seemed like it was actually occurring. To this day I don’t know if this was a dream or a hallucination, but it was one of the most bizarre experiences of my life.
And this was after getting only 600mg of the stuff. Cancer patients get hell of a lot more, so I can’t even begin to fathom what that must feel like.
After being on the Cytoxan for a while, Saturdays became manageable while Sundays remained a waste of a day. But it still killed one weekend a month, which is primarily why I switched to Ocrevus. It reduced the number of times I’d be infused each year from twelve to two. I don’t get the weird dreams or crushing fatigue like I did with the Cytoxan, and I have a little more energy, but my body still gets hot, my head still feels like mush, and if I overdo it the room starts spinning and into bed I go. It also takes about a day or two longer before the side effects are completely gone.
The curious thing about switching to Ocrevus is the difference in how I feel after receiving the plasma transfers. Perhaps that is because I used to get the plasma transfers and the Cytoxan on the same day every month, and I what I felt was mostly because of the meds. Without those meds, I feel physically wrung out and mentally fuzzy later that evening. By morning I may feel a little burnt-out, but that fades quickly.
These meds are designed to address physical issues, but there is a host of drugs for mental health issues that focus on brain chemistry. Knowing what my head and body feels like with some of the meds I have mentioned, my heart goes out to anyone who struggles with their mental health and needs psychotropic drugs to survive daily life. I can’t fathom what they must endure, and hope I never learn.
While I am certainly no expert, if you are faced with a chronic illness that requires pharmaceutical intervention, and the only experience you have with drugs are of the recreational variety, understand that the difference between what you know and what are about to receive, particularly if it is done intravenously, is like the difference between night and day. And if you don’t have that experience to fall back on, be prepared for a potentially wild ride.
Make sure you ask your physician what some of the side effects might be, and how you can expect to feel. I personally don’t recommend reading the literature that comes with the meds because it will scare the shit out of you. All it does is tell you all the bad things that could occur, including death. Who needs that anxiety? Besides, could and will are two different things, and your MD should be able to explain what the norms are. You need to get the low-down from them, and should find another provider if they won’t or can’t provide the information you need to feel comfortable.
It is better to learn that way than experiencing it without any prior knowledge, and wondering if something dangerous is going on in your body.
You can’t heal if you’re stressing out.