A Lifetime of Yesterdays 4/9/24

Today is infusion day. Every six months, I get some juice that helps keep me going. Ocrevus is my drug. It's the only one that is approved to treat my type of Multiple Sclerosis. The truncated cancer drug seems to be working so far. I have Primary Progressive Multiple Sclerosis or PPMS. It means that my condition will only do one of two things: keep progressing or stop where it is. Naturally, my best outcome is to halt it now.

If you have never had an infusion, here is what it is like. I arrived at the MS Center early and was the second patient where I would spend the next seven hours. They escorted me back to my assigned infusion bed, #2, where I usually like to be for the procedure. The mattress is comfortable, the nurses know me, I enjoy talking to them, and they make my procedure easier. Today, I'll have the infusion through the top of my left hand. My nurse, Pam, selects the vein and connects the intravenous to me; it hurts a little. I wouldn't say I like needles, but it's ok. They asked me for a urine sample, but I could not produce one. It takes me two bottles of water and two hours to no avail. My doctor decided to start my treatment without it; Saline goes in, then Benedryl, Tylenol, Pepsid, and Steroids. The Pepsid is cold in my veins. Ice is coming in, and next comes Benedryl, and I get dizzy and high; it's like college all over again. Then, tiredness slips in. I struggle to keep my eyes open and drift in and out. We will next review my daily meds and ask questions about my condition: falls, dizziness, sleep, and workout schedule. I get asked the same questions one more time. Last is my primary drug, Ocrevus, and she starts the drip starts at 10:45 am. I am high as a kite at 11:05. I am exhausted and want to sleep.

I believe in the Meridian Medical Center Multiple Sclerosis Center in Neptune, NJ. I have been coming here for almost two years. When I came for medicine, people drew me to this place. The medical staff, nurses, and doctors are my heroes. They make the whole MS saga understandable and palpable for me. This center has a culture driven by the people who work here. There is some serenity here and some Zen, too—a welcomed feel for someone like me.

There are 12 beds; later, they are filled with patients getting infusions. Lots of people are being diagnosed with MS in the USA, about two hundred per day. The estimated cost is $90 thousand per annum for these unlucky souls.

It's hard not to recognize the work happening here; it's unpleasant. As patients, we are sick. I see all types: people in wheelchairs, with canes, an AFO brace on their leg to help with drop foot, warm-up jackets, and so on. There are some people whose bodies are so twisted up it scares the shit out of me. There is some entrepreneurial development around the illness beyond drug therapy, like electric shock leg sleeves to keep your legs working while you walk. Some of these devices are in use. Sufferers will try anything for some relief.

I slept awhile, dozed in and out, wrote these words, and talked to the nurses.

I finish the infusion a little after 3 pm. During the procedure, I had to use the bathroom four times, but it was too late for the tests they wanted to run. Oh well.

I'm done, and it's time to go. I am hungry, thirsty, and tired but lucid. I run into my doctor on my way out, and we chat for a few minutes. We provide each other with updates and have a few laughs together—a perfect example of why this center is so unique. Being on-site with the people who are treating you is a huge benefit. Open space facilitates interaction and builds trust, which can only positively affect my treatment.

Peace, Chris