I had a new post almost completed, but got distracted by my best little friend, my rescued Boston Terrier from the Boston Terrier Rescue of North Texas. In the past, I was always able to find my unpublished drafts, but for some mysterious reason, I cannot find anything from my most recent draft. I try to create my posts on Word, so I have a personal record of what I wrote. But sometimes, I get inspired and my iPhone is always at the ready, and in this case, I wrote the post on the Substack app using my iPhone. Anyway, curses curses and more curses! I contacted Substack help and essentially, since my problem doesn’t involve payments (my Substack is free!), I probably won’t ever hear from them.
Tomorrow I am getting my third infusion of Ruxience at a nearby infusion center. (Nearby is a relative term in the Dallas-Fort Worth area; if it takes as little as a half hour to drive there, to me, that qualifies as nearby.) I first had two “loading” infusions in December 2024. Those dates were December 13 and December 31. Yes, the second one was on New Year’s Eve! I try to find meaning and I decided that perhaps, having the second loading dose on New Year’s Eve would portend a new start for my multiple sclerosis, commonly known as MS. What have I got to lose? So my infusion tomorrow is the third infusion, but I think of it as the second one, since except for the loading doses, each one will be separate and distinct.
During the first of my two loading doses, I did experience some scary (to me, anyway) side effects. My throat began to feel sore and just strange, and when I told my nurse, she immediately added more Benadryl and other medications, and that passed. During my second loading dose, my lungs and chest felt strange, and just for a moment, it felt hard to breathe. Again, extra Benadryl, steroids, etc. (I intend to keep a better list of additions I receive when I experience side effects, although I’m hoping I will have fewer of those or maybe even ZERO of those??) My husband will be there with me, and I’m so grateful for his presence. We’ve been together for a very long time, and I can’t think of anyone else who could provide more comfort and stability for me, in a scary situation.
The reason that Ruxience is scary to me is mainly that it’s a drug used for cancer. If you’re interested, you can find more information at: https://pmc.ncbi.nlm.nih.gov/articles/PMC7790722/ .
A long time ago, I had another treatment that was, in fact, administered to me at a cancer treatment center. It’s my understanding that it isn’t used very much anymore for multiple sclerosis, but I believe it made a huge difference in the course of my illness. After receiving that drug, commercially known as Novantrone, or mitoxantrone; it did make me sick, although not nearly as sick as people who get it for cancer, because my dose was much lower than theirs would have been. If interested, here is an article that explains what it does for people with MS (https://www.nationalmssociety.org/article/novantrone). What I do know is that after receiving the first few doses of Novantrone, I stopped tripping over the cobblestones on the way from my parking garage to my office, and was able to walk again pretty normally, without grabbing at small shrubs for imagined support. Also, a couple of years later, I accepted a job that required a daily round trip drive of about 140 miles and I worked in that position for more than NINE YEARS! My MS progressed, as it tends to do, and I had begun using first a cane, then a walker or more correctly, a rollator, to get anyplace that I couldn’t drive to. After about a year of this, I gave up and went on disability. It was exhausting, and I wouldn’t have survived that last year without my husband doing a LOT of things for me. He would put everything I needed for the day in my car, bring me coffee and breakfast, and dinner was always up to him. When he was traveling, I always picked up dinner on my way home. People with MS try to not blame themselves for the consequences of an illness with no known cure and not well understood by any laypeople, but I believe many of us do think that somehow, we are responsible in some way. I see an MS specialist now, and as much as he knows, he doesn’t have the time to tell me, in terms I could understand, what he thinks about its cause, possible cures, etc. It might be worth it to do a kind of interview and get a *Cliff’s Notes version, but he is a very busy guy. As a retired CPA, I had no biological sciences in college, although I did struggle through chemistry (which, strangely, I actually enjoyed) and physics. As a result, I have little knowledge of how our bodies work, except what I read now.
So, wish me luck with tomorrow’s infusion, and if there is anything interesting, I will make notes about it, perhaps for a future post. Thank you for reading my post, and please subscribe.
*Cliff’s Notes-more recently students use Spark Notes. Or they use AI, is my guess.