All I can say is this has been a dubiously surreal last couple of weeks... I'm preparing to fly back to Michigan tomorrow in what I hope is a fresh start.
I'm going to start by attempting to clear all of the snow that Michigan once again got pummeled with from my walk/driveway. Once I clear a path, I'm going to start getting the new place ready to move into by painting and refinishing the floors. I look at this place as a blank canvas ready to be transformed into a work of art with the experience I've gained re-modeling two homes previously. It's going to be great to feel useful again and I can't wait to get started...
I also found out that the place I was hoping to transition into down here in Florida will be ready to move into first of March. After this week of sleeping on different beds/couches, the timing couldn't be more perfect. I really feel for people/families who have lost things in a fire or other disasters. It's a pretty helpless feeling...
I'm grateful that I've been feeling reasonably well physically despite the stress I've been under. Right now, my number one goal is to rid myself of any unecessary anxiety so that my body can continue to work with the SAHA to keep the cancer down. I have my next scan coming up on March 24th at NYU. I really feel like this is a big one. If things go well, it will mean I'll get at least a year out of this trial, something I never would've fathomed as I barely shuffled into Dr. O'Connors office last April. How much more I'll get from this trial, God only knows. I've sent my tumor block to Baylor University to be tested for EBV virus and the possibility I'd be eligible for the RIT trial. I should find out the results by the end of the week. Prayers and good vibes are welcome for me to be EBV positive here! If I'm not eligible for the trial, I'll just continue to hope the SAHA maintains it's effectiveness and continue to try and live a healthy life both physically and mentally.
I'm cautiously optimistic about my future for the first time in a long time...
1 comment:
I just know in my heart of hearts that this refractory HL has something to do with the EB virus....... it is the only thing that makes sense to me ..I can't tell you why I am so sure...... but it is in my gut and I just wish that when we were talking to the head of the lymphoma det at the Clev Clinic I had pushed for more information .I believe the trigger is that damned virus and until they control the virus the cancer is a by product....
He did tell me when I asked about whether Chris having mono a couple of years previously to him starting on this road... could the mono ( ebv) have had anything to do with the HL..... he kind of blew me off but did say " if you put the EBV into a petrie dish with normal cells they will turn cancercerous" DUH>>>>>>>>............ all the time Chris was being sent here and there I wanted to scream is anybody looking at the EBV...... but he had married a 'dr>' by that time and I was effectively out of the medical loop.... my only regret was that I listened to her.. my thoughts are with you as always.....
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