Tuesday, May 26, 2009

C-kit Mutation testing et. al.

The call came yesterday. My Hematologist is going on mat. leave in early July (with twins, it turns out) and wants to do the c-kit mutation testing herself. Apparently, I'm an 'interesting' case...oh joy. So pre-op will be June 2nd. And they have to call back to confirm the June 9th procedure date. They need me in first thing in the morning for the procedure to make sure NO LATEX is in the operating room. I'm being put under for this procedure. With my history of shocking to local anaesthetic and the post-op hypothermia and anaphylaxis suffered in March with my right knee surgery...they don't want to take any risks.

I'm vaguely relieved that I won't have to be awake for another of these bone marrow tests. Equally relieved that my Hematologist/Oncologist (Dr. Lisa Hicks of St. Michael's Hospital in Toronto) thinks it's inhumane to do a bmb on someone without freezing or painkillers. She also wants a really good sample, so this is the best way to get it. We were hoping to co-ordinate my impending hysterectomy (not exactly thrilled about having to have this either...) with the bmb but Gynaecology at St. Mike's is booked up. The earliest consult I could get in for was June 22nd. It's gonna be a busy Toronto or St. Michael's month...

I'm scared to write the next bit. I want to jump for joy that it's been almost exactly a month since my last serious series of anaphylactic reactions (and subsequent 4 day stay in West Parry Sound Hospital - who totally didn't know how to handle me...sigh...) but I'm scared I might jinx myself. Everytime I've ever written that I've made it to such and such time landmark for no reactions, I have one within hours of writing it and then end up saying, "I spoke too soon..." So for now, I will write that I'm reserved about writing such things.

Overall, it's been a pretty good month. A few 'flare ups' we call them in Masto world. Not bad enough to be full anaphylaxis but enough to be uncomfortable, painful or debilitating. Had to use my new epi-spray (available over the counter in the USA but to be used with caution) about 4 times this month but it's better than using epi pen and calling in the big guns. The spray got me over the hump, enough time for drugs (Benadryl, Ranitidine, Reactine, Cromylyn, Ketotifen, etc.) to kick in and works REALLY quickly. So, I consider this a plus.

Have also kept myself on a super strict diet this month. This morning, I broke down and asked for a Tim Horton's French Vanilla, Half Decaf BUT my only deviation. It's been dairy free, mostly gluten free, meat free, cruciforous vegetable free, and been napping and resting sufficiently. Here I am with my period and doing ok so far. Usually I'm in hospital with my period because I flare up SUPER bad during this time of the month. Not unusual for Masto women, apparently.

Having said all that, I've not escaped the dire bone pain that comes with this disease. IF this is the disease I have. Ergo the c-kit mutation testing in the next 2 weeks. Dr. Vadas, my Immunologist (also at St. Michael's) and I have agreed that KNOWING for sure, is the best way to go. Because on the off chance this ISN'T SM...we need to know so that we can start looking elsewhere or realize that I'm the first of some sort of something else...however, I present like SM, so it's probably that. We'll see...In the meantime, I've been in incredible pain this month. I don't moan about it much (except to Antony) but it's bad. Night time is the worse. Sleep is...difficult.

My gut has been up and down too. But overall somewhat better. Could the Pantaloc be making some sort of difference? I'm on that now too since giving myself a hiatus hernia and stomach bleed through all the allergic coughing and puking.

I've been taking FLORADIX liquid iron and B-vitamin supplement too. It's the least aggressive of all iron supplements (in my humble opinion) for the body. There's NO constipation with it. It's made from natural sources, and doesn't taste too bad either. So, I'm wondering if this is making a difference in my overall energy levels? The dark rings under my eyes are improving. Hoping to have those mostly gone by the time my cousin Heather gets married. I'm supposed to be MC'ing the reception and I don't want to look like a bag of death. Am trying to keep myself as healthy and as strong as possible for this trip out West to Winnipeg at the end of June/beginning of July because this wedding is very important to all of us. As all family weddings should be. I don't want to let Heather and Julian down. That means taking precautions now, and then.

My hair continues to fall out. Anyone else suffering from this? I used to have such a thick and lucious head of hair. Now it's brittle and falling out far too much. Advice? Comments? Thanks.

It's nice to have a 'normal' sized tongue in my head for once. So for this, and not being in the hospital and flat on my back in bed ALL day, every day, I am utterly grateful. xoxoxoxo

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