Tuesday, September 30, 2014

Parole Calls

Have you ever wondered what it would be like to participate in a clinical trial?  Well I hadn't, prior to a few months ago.  I have always been against "big pharma," though I support organ donation, blood bank, stuff like that, I have always preferred medical methods or remedies that are more local, natural, and maybe even a bit pagan.  Usually you can sleep off whatever ails you, especially if you snooze in the sun!

Apparently now I also support cancer research by way of consenting to being a guinea pig for the medical big-wigs in Chicago.  It is very interesting actually, once you get into it, though I still find it a bit odd if I let myself think about the fact that I have yet to go to Chicago, but samples of my blood and tissues live there now. Every time I go to Sunnybrook for my treatments or other visits along the scheduled trial dates, they take about 20 vials of blood, in exchange for a nice little bottle of apple juice.  They use this to determine that I am healthy enough to continue receiving treatments, but also to track trends in my liver and kidney function, store some for future use, and various other details along the way.

"The way" is about a year and a half: 60 weeks plus eight weeks for monitoring after the trial ends - and I belong to them. I cannot travel out of the country, except to go to the US if I am close to a cancer centre (which, really isn't too much of an inconvenience because I don't feel up to jet-setting right now anyway, except for a possible attempt to visit my Mom in Florida, which I'm told I can do because they are close to Tampa, in case of emergency).  I wear a medic alert bracelet for the duration of the trial, which doesn't bother me except on CT scan days, they're trickier than the average bracelet to take off and put on when you're in a hurry to get in the gown! and the bracelet alerts medical help to check my wallet for a detailed card with numbers to call should I mysteriously arrive at a medical emergency with an odd set of symptoms. It's just one step shy of being microchipped and tracked by GPS I suppose?? It's a bit creepy but I do appreciate the support.

This brings me to the parole calls.  Every Tuesday morning I have to be home, although they will begrudgingly call my cell if I happen to miss the first ring. The lovely nurses of the Sunnybrook Melanoma Team phone me to check in with my symptom report.  We go through the same list every week and I have to gauge the severity of the side-effects I am experiencing. Its very methodical and I'll spare you the gory details, but I have dubbed it my weekly "parole call," much to the enjoyment of the nurses. 

They must deal with a lot of cranky people (city??) because they still seem taken aback by my joking manner of answering their questions. I do take it seriously of course, but honestly - I have had a whole week to think about how crappy I feel and how I will answer their routine questions! ;-)  I'm stuck at home for the most part, in my own cozy little jail, under the watchful eye of The Warden (my Mom is now known to my friends for being ever-so-sweetly protective of my rest time) even via phone! I can't go out of state or participate in any bad behaviour (did I mention I can't put any additional stress on my liver therefore noooooo drinking.........not even my beloved Fireball....), and I get a call once a week to verify my whereabouts!

I definitely do not regret the decision to join the trial, it is very interesting, it provides me with the best medical opportunities in the country, and it gives me the chance that I wouldn't otherwise have to get the drug that might help beat melanoma. I would encourage anyone given the choice to participate in a trial, whether it be for cancer or arthritis or MS or whatever else may be served our species, to ask lots of questions beforehand.  Find out everything you can about how it all works, what drugs you will be given and how, whether there would be a chance you would receive a placebo in a secret trial (the likes of one I flatly refused when asked).  I'm in week eight... only 59 to go.....

Oops gotta run - the phone is ringing! 

No comments:

Post a Comment