A Scanned copy of the money-quote from the Delaware Health & Social Services letter written about last week appears below. (for a clear image click to embiggen.) If you do the math you'll see that I am a whopping $2.97 over the allowed limit.
It's quite insulting, as you can see.
Everywhere I went Thursday and Friday medical staff gleefully reminded me that I was no longer covered for …..whatever it was to cover. I still don't know. They wasted no time yanking me from the computer systems. And it was frightfully annoying.
Thursday morning I had labs done at 7:30 am, and thought if a transfusion was necessary it would be scheduled Friday afternoon following my appointment with the surgeon upstate.
However, shortly after arriving at home a call came in that the BC was extremely low and I would have to be transfused that afternoon. It couldn't wait another 24+ hours. The blood was on order and I was to arrive at 1 pm, so the deed could be done.
Blood arrived at 2:30 pm. I didn't get home until nearly 7 pm. Another whole day shot - and I haven't many of them left, it seems.
My sidekick, Deb and I left earlier than normal Friday morning, made our way to Christiana in pouring rain which turned to freezing rain as she drove north. We still arrived on time so I got a second set of labs done and waited to see the surgeon.
The nurse at the surgeon's desk cheerfully informed me that my coverage had changed, then asked if I wanted to pay the co-pay right then. I laughed and said "bill me!" Apparently she didn't see the humor as I did. I could have offered her the $2.97, but doubt she'd get the joke.
The doctor visit was not a hopeful or uplifting one. There is no sign of a match in the database for me, and the wait of a year or more isn't an option. He had 3 suggestions:
See a specialist in 50% match transplants at Johns Hopkins which I may or may not be eligible to receive. A long shot.
Ask about getting into a new study for JAK -2 protocols. Another long shot. Don't ask. No clue.
Ask if the mild oral chemo - 5 daily doses every month (which could be administered at the Center here) which may slow down the eventual slide into leukemia is an option. Of course, I'd be subjected to transfusions as I am now, so little change there.
The doctor raved about the magic this specialist has worked on people far worse than I. The nurse gave me all relevant info and told me the doctor was forwarding my files to Hopkins and that an appointment should be made as soon as possible. Hopkins takes up half the city of Baltimore, MD and is considered one of the premier research hospitals in the world. We shall see what I come up with. There will be a call for an appointment on Monday morning. The wait may be a couple of weeks, but I'd be on his schedule.
Aside from these options I was given 2 years - on the outside - if things remain the same or one of the above comes to pass. I suddenly felt very small, very tired, and with little hope for the future.
The pity potty was quickly flushed as we made our way back to the beach in heavier freezing rain and sleet. It began to warm up as we neared the beaches so it turned to rain and eventually slacked up a little. Then, we were suddenly dealing with fog, as well. No joy ride to be sure and I was grateful for Deb and for not having to drive alone.
Both were starving, so Deb asked where we should have lunch. Being January, I had no idea who was open for lunch - being out of the loop nowadays. We tossed out a few possibilities and then she said we ought to go to Dos Locos for lunch so I could see my friends and get cheered up a bit. So we did.
No more pity-party-of-one. My whole outlook changed when I got those hugs and laughter, jokes and other silliness thrown at me. We had a delightful lunch with wine and good company. It was great fun. The restaurant bought our lunch, thanks to the locosguys. Very generous, as always.
Being a late lunch I wasn't hungry for supper last night, so before climbing into bed for the night I enjoyed a bowl of ice cream, which really hit the spot.
The rains continue today with milder temps in the low 60s, but have nowhere to go. I'm grateful because I don't have a lot of energy today. I remain snug here bracing myself to get on with setting up the new printer.
Yes, Mr. Procrastination, at your service. That's me.
And so it goes.