The door to the clinic opens. I have a decision to make and I need to make it now. I was quite confident with my thoughts after last evening. Then I meet Donnie Downer (not his real name). The brief conversation with him and his negative thoughts about Lemtrada has me briefly thinking hard about turning around, and never coming back.
The Downer and his family walk into the clinic. I look at my wife, who was privy to the conversation, and I quickly scoot through the door. I’m doing this. My mind is made up. I’m aware there may be some issues – that has not deterred me.
I watch the young fellow walk in and observe that he walks quite well. He’s pushing a walker, but he moves quickly and confidently. The clinic nurse greets him as if they were old friends, and directs him to a comfy infusion chair.
A different nurse greets me warmly, and has me settle into the chair beside the young guy. We talk about paperwork while she rips open a couple of packages. Within two minutes she has an IV in my arm and I’m being filled with steroids. If there was an even a trace of lingering doubt it quickly passed. The infusion process has begun. I have a thin plastic tube stuck in my forearm delivering the goods.
The nurse explains the steroids are given to counteract the fatiguing effects of Lemtrada. The last two days without steroids are much tougher to get through. The steroids are discontinued for those days due to severe side effects from prolonged use. The nurse explains the clinic workings and what’s available to us while here for the next five days. The clinic is quite welcoming to patients and their families with TV, Microwave, and the must-have Wi-Fi. I observe the family that came in with us are getting very comfortable in the kitchen area – I soon smell microwave bacon.
Mmm Bacon. But, packaged microwavable bacon? Part of the joy of bacon is frying it and the dance of avoiding hot splashes of grease singeing parts of the body.
The nurse comes by frequently to check on my steroid drip. She’s anxious to get the Lemtrada going as it generally takes up to four hours for a daily dose followed by a two-hour wait period. She says it makes a long day for her. About an hour and a half later she observes the steroids are done and draws up my first dose of Lemtrada. It’s time.
It took her less than a minute to get the infusion going. I’m certain she’s done this thousands of times. Now all I have to do is wait. Wait for the drip to be done. Wait until my walk improves.
There is only two of us receiving Lemtrada on this day so the clinic is fairly quiet.
I observed that my downer friend is quite talkative and friendly with one of the nurses. From their interaction I began to think that there is more to the young guy than his first impression impressed upon me. After a bit of friendly banter, I asked the icebreaking question most MS people ask of another.
“So, how long have you had MS,” I ask.
“I was 24 when I was diagnosed,” he responded. “It hit me hard. Before this I spent two years in and out of hospital. I spent six months completely bedridden in the hospital. After that I was in a wheelchair.”
“Wow,” I responded, “you’ve really come a long way.”
We talked about MS and how cruel its effects can be. How the effects of MS can be so different one person to the next.
We were interrupted by nursing staff and family throughout most of the first day. I observed that he seemed quite bitter, and grumpy when not dealing with clinic staff. At one point my neurologist walks in chats with Mr. downer. I guess we share neurologists.
Both Monday and Tuesday came and went without much trouble for me. They were fairly normal days in terms of how I felt – I’m pretty sure that was the steroids. My neighbor and I had had many more conversations throughout the day. At one point I reflected back to what he said to me on our initial meeting at the front door. On Monday he was indifferent and his attitude gave me the impression that tasking Lemtrada for him was hopeless. It’s the impression he gave me at the front door Monday morning.
Tuesday was a bit different. Through our conversations he became a bit more subdued and reflective.
I’ve been feeling normal (my normal) the first two days of the first round of Lemtrada. Tomorrow is Wednesday. I just have to believe its going to work out better than Mr. downer (now Mr. reflective).
I just wish that by the end of day two the numbness in my feet would just go away.
On The Road With MS 