This post was originally written in point form after I had come home on December 11th, 2012. I have only just found the time and energy to properly type the blog and transform it from the childlike scribblings into, hopefully, something more coherent.
I have decided to participate in a study at UBC which compares MRIs over a period of years for MS patients on Copaxone. When I enquired about the control group they indicated that it would be members of the general public, non-MS patients who of course are not taking Copaxone. During my study visit I discovered that many within the control group are students and researchers at the university. Ha! Funny. But only marginally.
So, what’s interesting about being a participant in this particular study? It certainly doesn’t have the flash and glamour of a new breakthrough medication, or even an enticement of trying to see if another relapse can be avoided. In truth, there’s no benefit to me medically. Financially, slightly. They’ve offered $50 per day spent at UBC for the sutdy. Clearly, I’m not it in for financial gain; I would have participated in the study regardless. The study just monitors my brain deterioration over the years. Charming. However, by participating I feel like my having this disease isn’t a complete waste of time, that perhaps something useful may come from it. If not for me, then at least for someone else.
As I so often do these days, I arrived at the hospital in spectacular fashion: breathless after running from the parkade, bags slung over my arms, shoulders, every which way, coat flapping around me like a half-opened candy wrapper. Uggh, what a sight. It had seemed that when I was driving, everywhere I turned there was a traffic jam. I was 20 minutes late and I didn’t have the researcher’s cell number, so I couldn’t call and let her know what was happening. So, when I “landed” at the UBC lab for my bloodwork to check kidney/liver function, I was shocked to discover that the lab nurse had absolutely no idea that I was so late or even that I was supposed to have been meeting Clara from the research team there.
Shortly, Clara, one of the doctors working on the study, did arrive and discussed the situation with the lab. Turned out to be such a non-event. Blood drawn and being processed, we went down to the MRI room. After changing into the delightful hospital issue jammies (I had to fold and roll the pants up at the ankles just so I wouldn’t trip and fall en route to the machine) we received the a-okay on the kidney/liver function bloodword and were able to proceed with the the IV for the contrast. Honestly, that part could have gone a lot better. The technician had to try several times to get the IV in. They wouldn’t listen to me about using my right arm. So after about four tries, they inserted the tube, sideways of course, and began the saline drip. After being slid into the machine, the peanuts teacher kept talking, but I couldn’t understand a word what with the earplugs and a soft pillow wrapped around my head, not to mention the gargantuan throbbing machine all around me. I wish I could have told her, politely of course, to not bother talking, just get the process over and done with.
In retrospect, the peanuts teacher was probably telling me that the IV drip would be switching from the saline solution to the contrast dye and that I might feel and icy-cold fluid dripping into my arm. Wow, that was cold, but I soon warmed up and the MRI continued uneventfully. Just closed my eyes, listened to the banging and thumping of the machine, which was interrupted only occasionally by the peanuts teacher. Forty-five minutes later I emerged from my cocoon. Not a butterfly, but a rumpled warm bug with a sore arm.
At this point I had thought we’d break for lunch. But that didn’t happen. Hmm, the next section must be really quick, otherwise they’d have let me have a break, I thought to myself. In hindsight, I should have said them out loud and I might have actually had a nice little break to regroup. Regardless, as I’m escorted upstairs to the research lab, I can’t help but think that the worst is over. Wrong. It quickly became worse, much worse. In reality, my day began to resemble a horror film. I had been aware that they would be testing the electrical responses of my brain. No big deal. My VEP performed earlier in the year to test the speed my brain was dealing with visual stimulii was a piece of cake. I didn’t think today’s visit would involve being painfully zapped by a large electrical coil while clenching a metal grip-o-meter with all my might over the period of an hour and a half. “I don’t think the machine is set up properly” I heard them say. “Try one, and we’ll see” Z A P ! “No, let’s change….” Crikey, it’s bad enough being the guinea pig for the study, but to be the guinea pig to set the machine up properly – I’m not impressed. Severe grouchiness is setting in. Fast.
After what felt like an eternity, I was unhooked from the electrodes and made my escape. God, I don’t know if I can endure this again in another… I don’t remember what the frequency of the study is. They zapped it out of my brain.
Although it was only 2:30 when I left UBC, I was completely worn out. I felt like crying, I felt tired, I felt hungry and even a little angry. I picked up a salad and debated returning to work as I munched. Sorry, not today. I’m a wreck. My only consolation is that the control group made up of the students and researchers will have to endure the same painful testing – at the very least they’ll be able to understand and empathize with the study participants.