It was the day after the chat I had in the corridor with Dr. B. that Boone wasn't supposed to see.
Since March 16, 2012, I've been researching CMML, transplants, prognosis's and treatment options. None of the information I found was good news. Maybe that's why I kept searching, in hopes of finding something that was newer, more promising. I did find the dandelion root extract which seemed to be the cause of Boone's blood work going into normal numerical ranges, even though his DNA was very messed up.
After the transplant, I did the same; searched the world over looking for post transplant outcomes, GVHD, protocols for it, and as before there was no good news. Like before, the later the studies were the worse the news became because of better record keeping and separating CMML from other myelodysplastic or proliferative disorders. CMML is the mother of all bitches.
Stubborn as Boone is, he beat the odds. His transplant engrafted 100%. 95% is considered complete. His PV samples, his bone marrow biopsy, and his spinal tap all were 100% donor cells. Then the GVHD happened and as you know, none of the protocols worked. Odds get really bad when the steroids in the first round don't control it. Odds get worse with each passing protocol with no response.
In all my research I couldn't find anything that the doctors had not tried; and they had had tried each in the apparent proper order. On Monday when Dr. B. frankly said he would have to do some research, I knew he was into territory where I don't have access. Thus Boone saw me in the hall asking questions, I couldn't ask in front of him.
As you know, Boone saw and asked, and I couldn't lie to him.
The rest of the day and evening for me was something beyond depressing, the feeling of loss and hopelessness overcame me.
Tuesday morning as I drove into town to see Boone, I called a few friends; no answers, no one to talk to. There were others I could have called, but after the 3rd attempt at getting our oldest friends, I was crying, sobbing loudly in the traffic. I couldn't seem to stop. The waves of tears just kept coming.
When I arrived that the Cancer Center, I was trying my best to vacuum the tears back into my eyes and get my face straightened out enough to be able to go into Boone's room smiling. I did fairly well through the lobby, but felt people were looking at me the same way they did at the CCU in Atlanta when Momma died. They know that face, that feeling, and are all hoping it doesn't come to roost with them. They just silently watch you pass by; all conversations put on hold.
After exiting the elevator and sterilizing my hands I hit the automatic door opener. The double doors swung open without a sound, and there just on the other side were the two housekeepers that have always been great about cheering things up. They saw that face. They know it well. They see it much too often.
Deschelle grabbed me and hugged me tight, "what's wrong baby?" I told her the prognosis from Dr. B.
Rose was within ear shot and came over to give me a big hug. "You can't go in there looking like that". She was right, I couldn't I had to get my act together before I walked into his room. My plan was to sit in the corridor until I could get it together.
But Rose and Deschelle (Sorry I know that's not the correct spelling) are experienced at making the worst of times into tolerable times. Times where you can smile and even laugh out loud. Rose told me to come on with her, she was going to dance her way into that room. And so she started shaking that booty for all it was worth. I got to laughing at her just as she flung his door open and sashayed in dancing all the way. She had gotten me into his room with a big smile on my face. Boone was laughing. Then here came Deschelle, who is always messing with Boone, and "sees" Rose dancing and proceeds to attempt to out dance her. By that time, I had to join in. So there we three were shaking our booties. Even tough I ain't got no rhythm; Boone was totally enjoying every second of it. He was grinning from ear to ear.
Just as we were getting good and wound up, in came the lady from Food Services with breakfast. She saw there was a party going on and began shaking that ass, shaking that ass. She had no idea what was going on but made it go over the top. We were doing Tina before it was over.
And so they each departed leaving me alone with Boone with a big grin on my face that I was able to hold on to for as long as I was there.
Ladies, thank you so much for caring, for giving everything you have, and for shaking that ass. You all deserve a big raise. You certainly have earned more stars in your crowns.
I hope the doctors know how much these ladies do for their patients and their families. They are at their best in the worst of times. Cleaning is the least (even though they are very diligent about it) of the things they do. Getting us all to laugh is their speciality, and they do it very well.
Shake on.
Kg
My journey through Chronic Myelomonocytic Leukemia. Or "How to Cure Psoriasis the Hard Way."
This is Pauline, Boone's wife. Every year on or near his birthday, he has his annual physical. His doctor told him that he had "Immature blood cells" and referred him to a hemotologist. To Boone's great surprise when he arrived for the appointment, the hemotologist was an oncologist. They drew blood and the Oncologist, Dr. K, wanted to know why I was not with him. Next visit he said, I better be there. A month later, we went to the appointment. Blood was drawn. Dr. K. said it could be a couple of things, and ordered a bone marrow biopsy. On the 3rd month, we heard the diagnosis of CMML.
3 comments:
Thank you for writing, Kathi. I know that was hard. A new week will begin and with it Dr S will return. He will not let these latest developments pass quietly. I'm sure he will leave no avenue of treatment go untried for Boone.
Fabulous to see the kind of care Boone is getting! You are also an amazing factor in all this....you are one amazing ally for Boone. Hugs to all! Harriet
I wish I knew you both! Praying for wisdom and miracles. Don't give up fighting or researching. If the world had more people like you and your booty shakers, we'd all be in a much better place.
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