“You know what I say?! HUH? You wanna know?! Here’s what I say! I say, ‘FUCK MS!'”
This, reader, is how my first second-half-dose infusion began.
I walked into the hospital’s joint infusion room — calm and collected — bringing cookies and my Christian mother. There, a man (whom we will name Mike) sat waiting already. And this is how he essentially introduced himself.
“So what ‘cha havin’ done?” he asked me.
“I’m having the second half of my first dose of my Ocrevus infusion. I have multiple sclerosis.” Here people wear their disease and illness diagnosises like badges of honor — We have been through the horrific, we are here for a reason, and we are proud that we are fighting.
“I’m having Ocrevus too,” he said. I hadn’t asked. At least not yet. I was interested in Mike, though at this point I hadn’t even sat down.
“Oh so you have MS too?” Now he had my full attention. Of the several people in and out of the infusion room during my first visit, only one person had MS and his infusion was a different medication. Mike seemed to relish in his new-found audience as I watched him lean back in one of the puffy, brown leather recliners. He had nothing but time as he waited for his infusion to begin.
“Yep and I was on Tecfidera for YEARS before, and that shit had me hot then cold, hot then cold, hot then cold — and I’m talking SWEATING then FREEZING, SWEATIN’ then FREEZIN’!” He gave me a look — eyebrows high, eyes wide, mouth a straight line — that told me he was at the end of his patience and careful treading was necessary from here.
“Wow,” I said because there was nothing else to say. He was still paused in an expression that either showed he wanted to fight me . . . or he wanted me to understand that he was about to fight something.
“Well YEAH — Wow! And I told my doc, ‘Doc, I’m not stayin’ on that shit anymore’ so he switches me to this.” Mike throws up his IV hand and smacks the IV pole next to him. There is a clatter as three of the four wheels are lifted into the air then fell to the ground again.
“So how do you feel about Ocrevus so far?” I asked. I felt he needed to get his story out more than I needed to hear, but any person willing to tell me his/her tale — well, let’s just say I do have a fire-burning passion to question people and learn about them.
“HELL YEAH! I LOVE IT!” He yelled and I looked around to see if the nurse was concerned about his volume level; she remained working, which I equated to the fact that Mike must not be new. My mother was the opposite — She had frozen in a position that was partly standing, partly sitting and honest to God, her mouth was open as she gawked at Mike. I made a mental note to go to all infusions here on out alone.
“You know what I say?! HUH? You wanna know?! Here’s what I say! I say, ‘FUCK MS!'” and here, Mike threw up quite a forceful middle finger at me then — just as forcefully — at my mother. I think I realized then that I liked Mike — Not because he just flipped off my mother but I liked his blunt disposition and his level of energy. He was the type of person I would both be curious about and say aloud “Bless his heart.” I worried my mother disagreed though and I cut my eyes at her; I was raised in a home where ‘shut up’ was considered a bad word, after all.
Mike continued to talk though (as was the case through our joint six-hour infusion), and through my questions and his candid desire, I learned he was diagnosed years ago. Mike is convinced that multiple sclerosis is genetic — He said he has it, his brother, his aunt, and even grandparents. This was both highly interesting and startling. Before this, I had never met a person with MS who has another diagnosed in his/her family. “So how the hell you gonna tell me that it’s not genetic, huh? How in the hell ya gonna tell me that?!”
‘Me’ wasn’t really me but doctors, though Mike was quite taken with an energy, directing his anger at me.
“I — I don’t know.” I said. He seemed to need an answer, which he waved away with his other arm.
“Yea, I don’t know either. It is — at least for me it is.” Mike’s last thoughts on this topic began to turn to a whisper as the nurse went to start him on Ocrevus, then me.
Cutting to the chase, this infusion went so much better than my first. I told the different nurse about my Benadryl reaction as Jocelyn (my previous nurse) walked in. Just as Jocelyn, she was patient and caring and pushed the plunger on the Benadryl syringe down slowly. There was some dizziness but it was nowhere near what I experienced the first time, and we both attribute that to the fact that I ate a more substantial breakfast. Before I even realized it, my Ocrevus infusion was ready and the medication was slowly entering my body. I grabbed a blanket I had brought and cuddled up in it as people came in and out for different infusions.
All in all the infusion room was super busy, so much so that my mother had to give up her chair and return to the waiting room. Towards the last two hours though, there was an open seat and she slipped inside once more, taking this picture of me content and asleep.
We went out to eat at one of our favorite restaurants, continuing to think positively about this process and celebrating the hope that this medication will work.
After, I drove home and changed into my pajamas then relaxed, napping lightly until Andrew got home from work. All in all, it was a great day.
* * * * *
In other MS news . . .
I came across a multiple sclerosis site called The MS Mindshift. This site aims to inform everyone about “the critical matter the brain plays in the role of multiple sclerosis.” One article in particular I found fascinating: What Grey Matter and Lesions Mean When It Comes to MS. This tells how MS research analyzing brain matter is currently underway.
Some background: Everyone has the two types of brain matter — grey and white.
Grey shows the size/volume of the brain, and it is here that communication starts; white matter carries those messages. Originally — and currently — researchers/doctors/medical staff focus on white matter because this is where ninety-five percent of lesions happen. (Remember: Lesions are attacks — shown in orange in the site’s picture — which are the result of cells being destroyed). However, research now shows there is a decrease in grey matter due to lesions.
The article goes on to explain that when everyone ages, brain volume loss is normal, but for those with MS, this happens faster. “That’s because lesions in both grey and white matter can become scar tissue, which causes the volume of the brain to decrease.” In the end, the decrease of grey matter volume indicates long-term cognitive and physical disabilities.
Interesting and I’m eager to learn more as progress continues!
I also joined a social media Ocrevus group where those with multiple sclerosis who are either considering or on Ocrevus can ask questions and receive support. The group has almost 9,000 members from around the world, and here I’ve read so many different stories.
When people were diagnosed alone has been interesting. This happened to many as a young adult (like me), but others were diagnosed around the age of fourteen. This was the youngest age I’ve learned of until I read a few were diagnosed with MS at the age of seven.
I’ve also heard a plethora of side-effects supposedly from Ocrevus: One woman loss her voice entirely and is struggling to get it back. But the most discussed side-effect: About seventy-percent of the posts are on hair loss, and I’m not talking Aubagio-hair loss as I experienced before but hair loss to the point that women are balding and purchasing wigs. They essentially say they were deciding between wigs or wheelchairs, which is sad.
Another person wrote about her experience, which near-mirrored mine. She was diagnosed around the same time as me, started on Copaxone, switched to Aubagio, was on Aubagio for years, and a new MRI result showed lesions on her cervical spine. Here, she says, “My neurologist told me I’m lucky to be walking based on the location of the new lesions.” Let the weight of that sink in. Lesions can happen at any time in an MS person’s body. Based on where the attack occurs and what cells are killed, that affects body function. If speech is slurred, the lesions occurred a specific area; if an arm is numb, a different area; if a foot is frozen, still another; and paralysis, yet again — a different area.
I am always aware that lesions can happen at any time — so much so that I refer to MS as ‘a ticking time bomb.’ I’m aware that every person has a different experience and I’m aware that no two people are the same (bodies are different, lesion locations are different, more). However, I tend to forget what the word ‘progression’ means — I thought it meant going through less severe symptoms (tingling in a leg, an itch in my arm, coldness in a foot) until MS progresses toward worse (paralysis). That’s not the case though — Progressing means more lesions, more cells being killed; and the severity depends on the location. Just like that female who had one lesion, one day, and in one specific spot — she suddenly had paralysis. This is startling and terrifying, really, to be reminded that one lesion — at any time — can change my life for the absolute worst.
I think I need to recognize that. I’m living in a war zone and instead of placing myself in an area where I can live, where I am living my best life — I am still doing what society says. I am still working for a paycheck. I am still paying every bill. I am still waiting to achieve dreams.
That needs to stop.
And that is also where a different post will soon lead . . .