Stepping Over the Edge

Last week I was able to meet with a cardiologist who specializes in pericarditis. She's written on the subject for textbooks, medical journals etc., and from what I'm told she knows pericarditis better than anyone in this country, I'm lucky to have such expertise on my side.

However, it was a bitter pill to swallow (no pun intended , but prednisone does taste AWFUL!) when she told me that five weeks on steroids haven't worked, and not likely to do so if they haven't improved things by now. Saturday I started on what's called a prednisone taper, you have to go down very slowly to allow your adrenal glands to start producing the hormone cortisol on their own again. This process will take months, best estimate if all goes well it'll be November before I can stop taking them.

I was very surprised that even a small drop from 40mg to 35 mg affected me so greatly. It's been a rough few days. I tried a trip to the grocery store yesterday, and after only picking up half a dozen items I was ready to sit down in the middle of the aisle and beg some strapping young lad to carry me through checkout (I still needed those items!) and to my car. The tumour in my leg is throbbing, and the pericarditis is making sure I don't forget that it's there. I'm anxious that this might herald what the next few months might be like. I've heard that the taper can be worse than the steroid side effects, I'll just have to take this day by day.

This isn't the hardest part for me to digest. My team of doctors agree that it's time to treat my overall illness rather than the pericarditis on its own; out come the big guns. Next week I go back to the hospital to get my prescription for a chemotherapy drug called Methotrexate. I'm struggling with this a great deal. I get that a great many people have been treated successfully with chemo for cancers, but I had decided early on that I wouldn't put myself through chemo for an incurable illness. Methotrexate from what I've read isn't as hard on the system as many other chemo drugs, but still kills cells and can be unpleasant.

The reality is that in order for our government to fund the interferon (about 30K a year) that has seemed to benefit others with the same illness around the world, I have to try some more commonly used (and far less expensive) options before they'll consider my application.

I'm not entirely sure yet whether I'll agree to take this new drug. I have a lot of questions to ask at my next appointment, maybe my docs will convince me - maybe they won't.

I value that my team of doctors do their best to educate me on my options, but they've said all along that decisions remain with me. From the very first visit I was told that their mandate is to research options to slow down the progression of my illness, but above all make sure that I'm as comfortable as possible.

Just how comfortable do I want to be?