Lurking, there….right behind me….
Do you feel it….. the uneasy, uncertainty – the nagging, overwhelming feeling something isn’t right – someone or something is behind you and closing fast. The creepy crawling awareness that heightens your senses and freezes you in hyper-vigilance, poised, tensed – ready for fight or flight…..
I’m having that feeling, been having it most of the day. I had my appointment with the Neuro Team 2, the doctor running the research program I’ve posted about previously, here. Well, it didn’t go very well. I sat waiting 40 minutes past my appointment time, they called me in and as I sit down – he pulls out a form and says, Ok tell me what medications you are on…. immediately air raid sirens start going off in my head.. huh?…Why? – I’ve given you this information twice already and I know for sure you’ve also rec’d the information from Neuro 1, because I checked. BUT i say nothing — after taking the 19 hours to recite all my meds, next he moves to another section and says OK now tell us a little bit about your background and some of the symptoms you’ve been having…. oh god… are you kidding me…. go ahead… do it….. I dare you – call me Michael and I will end you right here where you sit…. then rip your wallet from the bloody pulpy stain on the floor that used to be you – get your home address and murder your family.
They didn’t call me Michael.
I spoke up “ummm… we’ve done this all before at least twice I’ve given you all this information” – yes, yes, he says – I have it here and he lifts up the pages….. but each time I must ask you these questions to see if anything has changed, any meds started or stopped… any new symptoms etc etc…. We all paused for a minute so I could move back to Defcon 4 – visibly stood down and the remaining tension exited the room. (To shortly return) So I gave him all the info, he did a full examination and remarked that I was doing exceptionally well – yes un-huh, except for all the stuff that’s wrong with me…..
Then he says Ok we’re here for the randomization and to answer any questions you have before we proceed with the study. Then he says Ok what’s on your mind, what decisions have you made. So I say, well, based on what you’ve said to me as a world renowned MG specialist, based on what my Neuro 1 told me, who is the head professor of neurology at UBC, and countless webpages I’ve reserached – I really think I want the Thymectomy, so on the advice of Neuro 1 – if I am randomized to the no operation I will quit the study, if randomized yes, then we carry on and I enter the study…. Well doesn’t he just sit looking at me for a good minute, obviously unhappy with what I’ve just said and then he proceeds to get exceptionally pissy with me….
He starts saying what basis do I have for making a decision like that, what criteria am I using to elect to have this operation, in a sort of what the hell do you know tone…. so I tell him – look buddy, last appointment you spent easily 3/4’s of the appointment telling me it was the best treatment in your opinion, — all my other doctors and on several webpages you are listed in the top 3 doctors in the world for MG and you heavily advocated to me, for the thymectomy, my attending neurologist, who is as I mentioned, the doctor who teaches other doctors what to do, also firmly believes in getting the thymectomy…. plus numerous websites – all agreeing it is the best and most effective treatment that currently exists with virtually every single patient showing marked improvement in every single area.
So based on those criteria I have been up one side and down the other and reconciled with myself to have the operation….. tough decision, not taken lightly by any stretch….. I can only base my decision on the information available to me – I’m sure there are dissenting opinions out there BUT some doctor in Germany or Australia who disagree with you is not really on my radar – unless he has pretty compelling evidence to the contrary, and I’ve yet to see anything like that. So based on the 2 experts, the specialists, in my immediate sphere of influence – including yourself, a world renowned expert in this specific field who has dedicated the last 30 years of his professional life to MG, lobbied hard and convincingly that a thymectomy is the way to go…. all of these factors were combined and taken into consideration before making my decision to have the operation… further I am dead freakin set against having the Satan Urine, medication that comes with the study.. I want to stay as far away from it as possible, I describe the drug here. These were the criteria and basis I used to arrive at my decision to have you crack my chest wide…. poke around, pull something out, then close me up……
So again he sits looking at me, just long enough to be ALMOST uncomfortable and then he says…..
……TO BE CONTINUED TOMORROW…….yep – I made it a two part-er….. it’s just so exciting… see you tomorrow…
Have a Great Day.