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Thursday, July 28, 2011

July 28/2011 Update

Hello all:

So after the drug expense fiasco of 2 days ago, the Cancer Clinic called me in again yesterday and have approved me to have a "Drug Card". I guess what this means is that I will actually pay even less than before I capped out for the year at $25 000 with my work plan. The only string attached to this is that I MUST accept Homecare now. That means having a nurse and/or PSW come in to the home to check on me etc. I guess its a small kick at my pride but overall a good thing. Honestly, its not even the chemo drugs that I was truly concerned about paying for, it was all the other drugs that I take too. I still don't have much confidence that the chemo will work but I will stick with conventional medicine until they tell me otherwise.

Thank you to everyone who voiced their concern over this matter. Just found out too, that if you take I.V. chemo at the hospital, you don't pay anything for it. (so I was told third-party anyways) Where is the rhyme and reason to that?? Brain tumours are most effectively combated by Temozolomide, which comes in pill form and is obviously not covered by our OHIP plan. Anyways, enough griping about that...I'm back on chemo as of yesterday and this will be day 113 of taking it in a row (with the exception of the one day missed due to no coverage) Oh joy oh bliss.

Onto something a little brighter.....kinda

I am part of a fundraising team to help send a local family of 5 to Disney this Fall. Sadly, the Father of the family has been effected by a terminal cancer and they are telling him he does not have much hope past a year. The dad and mom are only 37 and 36 years old with 3 children under the age of 10. I know from first-hand experience when my co-workers from Cami, my military friends as well as all my other family and friends rallied together to allow my daughter Faith and I, to enjoy an experience of a lifetime at Disney as well as to go on a Disney cruise. Knowing how much it will mean to each and every one of them, how could I not help out!!

As part of our fundraising efforts, we are having an event on Sunday August 14th at Quai Du Vin Estate Winery just outside of St.Thomas. I would truly appreciate any support you can give whether it be coming to the event with you family and friends, contributing to the cause through a donation, or a product/service to be offered as part of our auctions, draws etc. For more information, please visit the following website....www.studioartsrock.com for lots more details. Any assistance to make such a memorable experience for this young local family would be greatly appreciated. If you know of any corporate or local business that may want to participate or want more information or tickets, please feel free to contact me (ed_mcdade@hotmail.com)

Thank you in advance for all your support of me as well as this local family

Ed

Tuesday, July 26, 2011

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