July 26/2011

Had another cancer clinic appt today. My oncologist took yet another look at the "hole" that has never healed since my second surgery and now thinks there is a possibility that the skull may be infected (as well as the surrounding tissue) If this in fact turns out to be the case, it may mean removing the infected portion, and later replacing with a synthetic piece. Won't know any more details until I see the plastic surgeon. There is also a piece of bone that is now protruding through the hole which doesn't make matters any easier. The whole matter is in a holding pattern until we see what the tumour is doing after my next scan. It may be surgery time....who knows at this point. (thats if I opt for the surgery....depends on what deficits they tell me to expect) If there will be no quality of life....guess that makes my choice pretty straight forward.

So my oncologist decided to keep on giving me chemo in hopes that one day, it may reach the deep tumour and have some effect on it. Personally, I think its a pipe dream but whatever. I get my prescription, head to the on-site pharmacy, only to find out that I have already this year, received $25 000.00 worth of medication and that is the cap of my drug plan through my previous employer. Needless to say, I did not have $4800.00 in my pocket to pay for 28 chemotherapy pills!! So I ended up walking out of there without any chemo meds and they are working on a plan (I imagine through the Trillium Foundation) to have the meds paid for by the gov't. Until that time I will hurry up and wait. Actually I am in no hurry because I am beginning to think this chemo is a futile effort that is only beating me up more and more with every pill swallowed. 112 days of chemo with only minimal results on the smaller tumour and zero results on the larger, deeper tumour. I'm on the edge of not bothering with it to be honest. Maybe its just "one of those days" but those are my thoughts at this moment.

Had a small focal seizure this past weekend, which, to me, is a sign that the larger tumour is continuing to grow. I will have to wait until Sept 13th until my next MRI to find out though. That seems like years away to wait for a known aggressive tumour. So MRI on that date...then usually have to wait a week or 2 for the follow-up appt. Oh joy.

Ed