So there it went.....21 days of a 28 day cycle on Etoposide. This is the one of the older chemos that my NO (neuro-oncologist) thought I should give a whirl, just for a crap-shoot I assume, since its success rate falls in the 10-20% range. After one cycle of it and even increasing my anti-seizure meds, I'm still experiencing focal seizures. To me, that says the stuff is not working. I could be wrong and there are other possible root causes but after fighting this for almost 5 years now, I have gotten to know the signs and symptoms pretty good. That being said, I have a week to decide whether or not to start round two of this stuff, or wait until Nov 2nd and review the options with my NO and possibly start the Avastin from there (as long as my blood counts have not deteriorated too much from the Etoposide) As of today, I am leaning toward starting the Avastin sooner than later.
Along with the focal seizures, my left side is becoming much weaker. Its at the point where I can only use my right hand for typing....cannot sign my own name or print, and many other tasks I'd normally use my dominant left hand for. So yes, it is taking me forever to hammer out this blog using only one hand and correcting all my errors along the way! I may have to switch to video blogging soon. Anyone got any other ideas??
The response to the Facebook pages has been tremendous. Keep sending those letters and e-mails in to our gov't officials! They have to wake up one day....whether its during my time, or the next person who stands up to fight for some extra time with thier loved ones in Ontario. Guess our Provincial Gov't is just not as compassionate as British Columbia, Manitoba or Newfoundland!!
~~insert coffee break for hand to rest~~ lol
I will never be truly able to extend how grateful I am to all of my team and supporters of putting together this fundraiser to enable me to start the Avastin program. I am truly blessed to be surrounded by such a caring group of people. This includes family, military, Cami, school and even complete strangers who have contributed in one way or another to hopefully grant me some more quality time with those who are important to me. I sit here in complete awe of each and every one of you. Thank you for your tireless efforts.
On another positive note....I am possibly qualified for up to a 20% discount (if you can call it that) on the cost of the Avastin from the manufacturer itself. I just have to submit some previous years tax forms etc and they will determine if I qualify. This would equate to possibly reducing the monthly cost of the drug from $8740 to $6992. Still a crazy amount but every dollar helps. I will keep you posted on the outcome of that....hopefully there are no hidden clauses hiding in the background!
Well my right hand is telling me it is quitting time but before I sign off, I just want each and everyone of you to know that although every day is an emotional and physical battle for me (yes, I know I'm good at putting on the tough guy face) my strength comes from all of you. Having you guys in my corner is what keeps me lacing up the gloves every day, getting out of bed.....and fighting for my life.
Love to you all
Ed
No comments:
Post a Comment