Decision Made

The thought of getting rid of my cane is stuck in my head. The thought is so enticing that I bumped the time line up in my head. June of the first year. My doctor is a little less hopeful as he figured I might see improvements by September.  Just a little more incentive to get excited about this treatment.

While all incentives are good, I must remember that there is no going back once this course of treatment begins. As soon as the first drop of liquid enters my body there is no turning back. That thought sticks around in the back of my mind. It almost frightens me. It then strikes me there is a possibility that my body could possibly not replenish the B and T cells.

What if I’m left without an immune system? What then? The drug kills off the immune system in hopes (vastly scientifically studied hopes) that it will reboot. What if there’s no reboot?

I’m just unnecessarily worrying myself. I continue on with the plans. My infusion dates are set for the first week of February 2019. I secure accommodations, and begin the preparation – more mental than anything else. I wait with nervous anticipation. 

Christmas came and went. It’s the family time of year I look forward to, but this year was different. There was a gnawing at the back of my brain. Nervous distraction.

January came and I went to the brain centre to participate in a cognitive trial study as part of the Lemtrada infusion. It was an exhausting day sponsored by the makers of Lemtrada. During the trial I had met a nurse there that spoke about the drug being a very powerful drug. That doesn’t relax my thoughts about this procedure.

However, I’m still doing it. I have to think of the positive benefits.

On the Sunday before the infusion, we made the four-hour trek down to the clinic. 

I’m apprehensive.

The instructions were quite explicit. I have to be there right at eight am. The infusion will last four to five hours then there’s a two-hour observation period to ensure nothing adverse happens. One of those bad things is my heart stops. Nothing there to ease my apprehension.

I must have someone to drive me to and from the clinic as the infusion could make a person a bit dopey.

We arrive just before eight and the doors to the clinic are locked. A young guy with a walker comes in with a family. I assume a wife and a mom and dad.

I’m on my scooter, so the young guy with the walker assumes, rightly, that I’m here for treatment.

“Are you here for the Lemtrada infusion?” he asks.

“I am,” I respond.

“Is this your first year?” he continues.

As I do with conversations, I like to observe the person I am speaking with.

I estimate he’s in his early- to mid-30s. He walked his six-foot frame fairly well using a walker packed with stuff he would require for a day in the clinic. He appeared a cocky confident in a young guy kind of way. He wore a Canucks hockey jersey, and a pair of loose black sweatpants.

“Yes, my first day,” I responded.

“This is my third year,” he followed. “The doc figures I could really improve with another round of treatment,” he continued.

“Third year?” I questioned. “I thought it was a two-year treatment?”

He told me that Lemtrada can be administered to a maximum of five rounds. However, if a fourth round of infusion is needed there will be a year off. 

“I remember my first year,” he said “It was the Wednesday that was absolutely the worst.  I thought I was going to die. That was the worst day for me, and they told me I would really feel it on the Friday. That was the worst.”

He continued on in a very negative way about his experience with the infusion. I’m sure he had a couple more stories about how awful it was, but all I heard was Charlie Brown’s teacher.

I’m less than 10 minutes away from jamming an infusion needle in my arm – THIS is the first person I meet who has undergone Lemtrada treatment. 

Until the previous evening I was on the fence about going through with this. I laid in bed just hours before and weighed all the benefits against the negatives. Last night the benefits finally won the two-month battle. I slept well with my decision. I was doing the right thing.

Now I meet this guy.