Snow was a no-show yesterday, so I kept the transfusion appointment (at the Infusion Center, not Transfusion room as I've called it) and I must say it was quite liberating to be without that damned mask. Nice to smile and have folks notice. And they did notice. The nurses are the best and they get my sensahumah, bigtime.
The doctor and his assistant arrived and we began a discussion of the next move in my treatment care. The mere fact that I am going to begin positive treatment lifted my spirits enormously. If you've dealt with a life-threatening, life-altering health issue, I am sure you know what I mean.
We're starting off with a corticosteroid for about 6 weeks to look for positive changes to the blood and kidney functions. Half way through that, we'll begin a regimen of a low dose Chemo (not sure if IV or oral form yet) that will be administered here, not 60 miles away. A definite plus in my book.
That treatment will consist of scheduled doses - on 5 consecutive days - administered at the Center each month for 4 to 6 months and see what happens. My time in public will be limited and my immune system will be compromised considerably. I will be pretty much isolated, yet again. Well, it IS Chemo, after all.
Prescriptions for the steroid and folic acid tabs were picked up at the pharmacy on the way home last evening and treatment started today. There are beaucoup side effects possible with these drugs, but that's the chance I'm willing to take, for now.
The hospital Pharmacist, and their Medicare liaison joined the group and provided a possible reason for the big guys at Hopkins and UPenn passing on my case. I would be up for Medicare approval for an Allogeniac transplant. This means the stem cells wouldn't be a perfect match, making it more dangerous and time-consuming. The explanation may lie in that Medicare considers non-matched transplants as "experimental" and not proven, and therefore wouldn't cover their cost of the procedure and subsequent intensive care.
I can understand this. It is a lot to ask for such a risky procedure, so maybe I'm better off going this route after all. I mean, I don't have much of a choice in the matter anyway. So, sit back and do what I'm told, and see what happens. As the Beatles sang: Life goes on within you and without you.
Sent a text to the locosguys, and Linda detailing the news; they were surprised and thrilled to hear that - at least something was moving forward.
Sleep was a no-show last night, as well. Midnight found me wide awake reading a new book. Dunno why. Maybe I was just excited by the change of direction of my medical care. Still, I awoke at the usual time and none the worse for the lack of sleep. I feel well rested, that's for sure.
A visit to the restaurant is on the gay agenda for tomorrow to spend some time with my peeps. This will be the first time without the mask in 5 months and I am anxious to talk and breathe freely, and be out and about again. It has been a long time.
And so it goes.
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good news indeed; have fun with your locos friends today. does this mean we will not see you in march? that would make me sad.
ReplyDeleteAt least it's something. And it makes you feel better, too. Good that.
ReplyDeleteWP
You already feel better now that a plan is in place. The plan, even if not perfect, means that something positive is happening. Obviously the status quo with no treatment, except for the transfusions, is a negative.
ReplyDeletei hope you are greeted at the restaurant like carol channing at the gardens.
ReplyDeleteI am glad you are feeling a bit better.
ReplyDelete