I must begin this post with a round of apologies to all my stalwart readers – I have been missing for some time, ’tis true. Any who know me, however, will know that I have hardly been sitting idle. On the contrary; I had some fun early in May when my friend from South Africa was in town and staying with me between the 3rd and the 16th. We dated while she lived here between 1999 & 2000. I was just a boy of 16, but, to this day, I’ve yet to find anyone who can make me feel emotion across the spectrum, from the deepest love I’ve ever known to the most vociferous rage I’ve ever felt. Call me a hopeless romantic, but I think that measure, from one end to the other can be viewed as precisely how much I love this girl. It was an interesting 13 days. I more or less relived some of my favourite parts of my life thus far. But, on the 13th day, she left as planned and returned home. There is some chance she may be reading this, and if that is the case, I only have words of thanks to her for bringing some enjoyment back into my life, but not letting me get too carried away.
Since her departure, I’ve been hard at work taking care of ME (yup, that ‘ol story of me & my MS!). This time, though, some arguably interesting things have come to light. Any who follow my blog have heard me voice complaints about my symptomatic nemesis: the cerebellar tremor. It’s my nemesis for more than one reason – response to medications is sporadic, at best. More often, response to medication is nonexistent. It’s the symptom that I can’t disguise, no matter how hard I try. It’s with me, always. And so, being me, I have been focusing my efforts on finding some way to to treat this untreatable symptom. My research led me to read on and on about a treatment referred to as DBS – deep brain stimulation. And so, last week, I met with a neurosurgeon to discuss my viability as a candidate for such a procedure. And wouldn’t you know it…
Chemo and DBS do not mix. As a matter of fact, the neurosurgeon told me I would need “normal” hematological results for a solid month before they would even consider performing surgery. What this would entail is me stopping chemo for a period of no less than two months, and being monitored closely the following month to see if my leukocytes (white blood cells, or WCB’s) and my erythrocytes (red blood cells, or RBCs) show up with normal counts.
Can I afford to stop treatment for two months? I don’t know. What I do know, however, is that the thought of getting any worse than I am right now scares the living shit out of me. Enough so that, at this point in my disease, I’m not willing to take that risk.
All this blows my other option for treatment out of the water as well – some of you may have read of Gilenya, a once daily oral medication now on the market and approved by health Canada for MS… but only indicated for relapsing remitting MS. But my nemesis… it was my newest symptom, making its appearance in September 2010 (or thereabouts, I’m not quite sure exactly when it was), has not gone away, and only continues to worsen with time. What does that mean? Have I moved into a progressive stage in my disease? Should my diagnosis be changed from RRMS to SPMS (secondary progressive MS, for all you jargon haters)? That may wind up doing even more damage; most new medications are indicated for relapsing remitting, and aren’t really tested through randomized, controlled, blinded trials with people who are in a more progressive stage of the disease.
Awesome. And the disease has been so cooperative lately… I should’ve known it was going to throw me for a loop sooner rather than later. Such, as they say, is life. Mine just happens to be different. I’m not able to qualify it by calling it better or worse than anyone else’s, but anyone can see, clear as day, that it most certainly is different.
So no, this chapter of my life is simply being put on hold for the moment, and I am simply going to stay the course, wade through this chemotherapy and all the fun that comes with it. The saving grace of the last two months has been this: one of the nurses at the MS clinic approached me and told me about a group that she has started. A group of young people (aged 21 to 35), English speaking Montrealers suffering from MS. I think joining a group such as this would be good for me. Getting me out of my house, away from the front of this computer screen, and actually interacting with other human beings suffering through the same quagmire that I am… perhaps I can even be of help to someone, anyone.
As always, here’s hoping. I know my hopes are still sky high.