My PA, Melissa, told me I was performing “above average” in my healing.
Who? Me? Was she sure she was reading the right chart?
I have heard many special comments from my Drs, NPs, and Pas, but generally they go something like “any awful rare side effect will happen to you” or “You’re too young for this” or “The Tumor Board has decided that your cancer will continue to reoccur indefinitely until you receive a second transplant.”
The Tumor Board! I don’t mind being discussed, but I’d really like my name kept out of tumor board discussions.
If you break it down, I hear a lot of “Hill, you’re really fucked.”
But not today, no, not me. I’m an exemplary patient who may be heading home on Thursday.
I have some tough cells. They will start to engraft by the end of the week. The neupogen I’ve been taking has been artificially lifting my counts. The methotrexate, velcade, and prograf serve as immunosuppressants.
I’m off my neupogen today! Go me. No more pulsing headaches. No more bone pain for me.
I stopped my methotraxate and velcade last week. My prograf will be tapered between 100 days and six months. My prograf levels will need to be checked periodically. I think I can get this checked at DHMC.
At about thirty days from my transplant, I’ll have a kimerism test to differentiate the portion of my system that is still mine and what is my donors.
I’m really turning into somebody else.
We’ll know engraftment is taking place when my WBC and RBC start to go up with out medications. During this period I’ll have to watch for “Graft vs. Host Disease” Bowel problems, rashes, mouth sores are typical symptoms.
It does take time for my donor’s cells to decide what they want to be when they grow up. They are not fetal cells (like in human development); they are “new to me” cells and need some time for orientation. They’ve just moved in.
I may have another dip in my numbers at about 60 days.
Melissa is my girl now. I like her. I also noticed, that when I decide a woman should be my friend, I do some friend flirting. I tell cute stories. I dress cute. I smile and shar about my life. I was definately doing some friend flirting with Melissa. She went to Columbia. She worked in the Bronx. She has a little dangerous side. She's my kind of girl.
My outlook is looking good right now. I’m a star patient. I’ve always had trouble failing and not getting into remission was an emotional beat down. Maybe, I’ll get it right this time.
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."