We arrive in Chicago when all the tulips are in bloom.
It’s mid April and they are everywhere. Blocks and blocks of color coordinated beautiful flowers.
In front of every store on Michigan Avenue and everywhere else we went.
Now that is some city planning!
We were happy to be there and excited to finally feel hopeful that this disease and nightmare would come to an end.
We met with the coordinator, Paula and Dr. Burt on Wednesday afternoon.
We got the rundown of the trial and a stack of papers to read on all the
procedures and the side effects of each one.
There is a small chance any one of these things could kill me, I have to sign off on that, no problem. I am very clear of the risks and will do anything to get better, even die. Once I am accepted into the trial, I will have a preliminary round of testing that will take a week. The next week is sort of a wait and see if anyone needs a second look or redo from week one.
The next week, on a Monday I will be admitted to the hospital. I will be given a chemotherapy drip, which will be like a nuclear bomb to my system.
I will be bald and sterile within a week.
I will then have to have Michael inject me daily, in the tummy.
This is to make me sicker.
After a week, they take my stem cells out through my neck.
This is a lot to process but still I’m not scared off. I mean what’s bald and sterile if I’m better? I will go home for ten days and then when I come back I am admitted and am in isolation for three weeks. About halfway through I get my cells transplanted back via IV in my arm. Then I come home disease and drug free!
Where do I sign?
The tests were basic for the evaluation. I would have another “shock the monkey” but if it confirmed my CIDP diagnosis and got me into the trial, I was willing and ready.
The test was done on a Thursday by the neurologist involved with the trial and we would meet with the same neurologist the next day to go over my results. I left relieved to have number five behind me and in actuality it wasn’t that bad.
I didn’t even cry.
The only other time this test didn’t make me cry was after vacation when I came home sicker and was getting round two of Plasmapheresis.
Oh, No No No, this could not be happening!
Please God, just please.
We went to dinner that night and I’m not sure what was bigger, the lump in my throat or the knot in my stomach.
On Friday afternoon the doctor said out loud my biggest fear.
The nerve damage was permanent. He said the myelin sheath is gone and I have actual axion damage which is not reversible. He says the transplant would help prevent further damage to the rest of my body but in his opinion my hands and feet were never going to recover.
I don’t think we moved, blinked or could breathe.
We left his office and headed for the airport, still not saying a word.
One more time I’d be wheeled through an airport crying without the ability to stop.
Our flight was delayed and I called my brother to let him know I’d be late to the store in the morning if I made it in at all.
I also told him my prognosis.
By the time we landed in Atlanta he had called mom, dad and our brother, Jeff and our sister, Mendy. I had no time to make something up or sugar coat it, everybody knew and it was bad.
My mom left work the next day because she said she “had to grieve for her child”
I felt like I’d been kicked in the gut and in the head.
Hell, my whole body hurt.
So did my heart. How?
What now?

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