Oh, Honour House you wickedly comfortable temptation. It’s Lemtrada-infusion-day-four and I arise before the sun from my warm and comfortable bed. I have no desire to sit in an infusion chair for five-plus hours. I think three days should be enough to obtain all the (supposed benefits) of the drug. I feel like finding the nearest hipster coffee shop, grab a coffee and newspaper, sit, read, and do a little people watching. I’ve had enough Lemtrada and steroid juice.
However, I must go on.
We head down to the kitchen for a delicious bowl of frozen berry-infused oatmeal before making the drive from New Westminster to UBC. We arrive at UBC a bit earlier than normal and head straight to the coffee shop. We get our morning beverage then find a seat. We talk briefly about the day and make plans for supper. We are not certain what the day will be like as there is no steroid portion of the infusion. The purpose of the steroid is to combat the fatigue, but that’s not realized while it’s being administered. Or for the next day it turns out.
We made our way to the infusion clinic and I get rigged up. It’s just another hole in my forearm where this non-evil looking clear liquid is delivered into my body.
We play a few games of dice, some crib, and the day continues like the previous three. I look over to Donnie’s empty chair and find myself missing the entertainment that he and his family brought to the room. To my other side is the young woman and her mother who have a quiet conversation that carries on for the majority of the day. The room fills, then empties, of other patients.
Meanwhile this clear liquid finds its way from its plastic pouch through to my arm then ultimately ends up somewhere in my brain. I marvel at the science that has developed a liquid (that looks like water) that infuses into my bloodstream, finds my B and T cells and destroys them.
The day goes by just as the past three. No issues. It takes about four hours then I’m into observation period. I feel okay so I’m sent on my way. Four days later and I’m confidently knocking this out of the park.
The fifth day starts much the same, but I feel not as rested. I notice a shower was met with some difficulty. Fifteen minutes into the day and I could really use a nap. I wonder if the way I’m feeling is a result of the Lemtrada or is it just the usual, unpredictable MS
MS has this way of fooling you. A stretch of four days symptom free can easily be ruined by one or two really bad days. The kind of days that lend to thoughts of hiding out in a dark basement.
I go through the motions. We packed up, took everything to the car in preparation for a long day at the clinic then a four-hour drive home. We quickly grab some breakfast then out the door. Exhausted determination got me to this point me. We stop on our way up to the clinic, grab some coffee, sit in the coffee shop for a few minutes then off to begin day-five.
The nurse rigs me up and the juice starts to flow. I sense some accomplishment although all I managed to do was show up, and sit in the chair. The day goes by quickly. We play some dice, a few games of crib, and converse with the nursing staff. The young woman beside me spends the day in deep conversation with her mom. The clinic is busy. I people watch and anything else I can to while away the hours.
The infuser device rings out its noise of completion. I’ve got two hours of observation then the ride home. I’m feeling the exhaustion. It’s more troubling than the morning.
I’m itching to get going an hour in to the observation. I assure the nurse that I’m good to go. She, on the other hand plays by the rules. She politely and playfully says fifty minutes then you can go as she walks away (I swear she was chuckling a bit). I’m held captive.
Fifty minutes goes by quickly. We say our goodbyes then begin the journey home.
I’m not allowed to drive.
The trip back to Kamloops seems longer than usual. I float in and out of consciousness. I’m pretty sure we stopped for something to eat somewhere in Abbotsford, but I can’t be certain. At this point I’m not certain about anything.
We arrived home, pulled into the garage, and I open the car door. At this point I don’t think I can feel any worse. I now understand the single reason for the steroids. It’s to ensure that the patient shows up on day three.
I’m grateful to my wife and all her driving. I struggle to get out of the car. Once out I convince myself the bedroom is not far away. I take a couple of steps. I’m convinced I can make it to my bed. I struggle to lift my legs up the stairs. Not too far now. My heavy legs make the walk to the bedroom feel like a slow-motion marathon run.
I make it. That was not fun.
I fall on to the bed and am immediately unconscious.
Numb feet and all.
On The Road With MS 