Today I write from the hospital at the University of Kansas Medical Center in the Bone Marrow Transplant on the fourth floor – Unit 41. We’ve been on a journey that has taken us from discovery to acceptance to participation. There have been 101 emotions that I’ve gone through since the time of first diagnosis to presently sitting across from that magnificent man who is having “buckets” of toxic chemo drugs shoved in to his body.
DISCOVERY
I have changed the Category on my blog to AML (Acute Myeloid Leukemia) instead of Myelofibrosis. Once we recognized that Dave’s condition is AML and there was no way of getting rid of it or returning to the quality of life that he deserves, we knew we would have to say the word “leukemia” and understand that this doesn’t mean a death sentence. Leukemia has been around since Biblical times although never understood until now.
Acute myelogenous leukemia (AML) is a cancer of the blood and bone marrow — the spongy tissue inside bones where blood cells are made.
The word “acute” in acute myelogenous leukemia denotes the disease’s rapid progression. It’s called myelogenous (MI-uh-loj-uh-nus) leukemia because it affects a group of white blood cells called the myeloid cells, which normally develop into the various types of mature blood cells, such as red blood cells, white blood cells and platelets.
Acute myelogenous leukemia is also known as acute myeloid leukemia, acute myeloblastic leukemia, acute granulocytic leukemia and acute nonlymphocytic leukemia.A
After an intense session of treatments and recovery therapy in Wichita’s Wesley Medical Center and two more intermittent sessions of follow-up chemotherapy, the Leukemia is in remission. So now we have come to the stage of …..
ACCEPTANCE
Acceptance has been the key to how we have dealt with this. Perhaps Dave’s acceptance level is better than mine, as he has displayed courage and strength while we have marinated in this new found fact that our lives would be forever changed. Perhaps too, he has displayed this courage for my sake stoically “like a rock” as he often says that he is. I’ve had many moments of wanting to run far far away and pretend this is not happening. I’ve had horrible thoughts of jumping on a bus, wearing a wig, dark sunglasses, speaking with an accent and taking on a new identity. Naturally that’s the drama queen part in me. Always the flair for over-the-top behavior. But somehow, miraculously I have come to terms with this. I have cried. I have become so overwhelmed with fear welling up inside me that I’ve made myself sick. I’ve lost so much sleep….HAH…ya thought I was gonna say “I’ve lost so much weight…” I WISH! NO sadly, my weight has only changed a small amount, but my attitude about my health HAS changed since all this began. I have prayed to God that if it be His will that He heal Dave – make it so. Captain Picard and God, please make it so! But I’ve also recognized my other spiritual path I follow in meditating positive thoughts and positive energy so that all that is good in the Universe, all that is humane and powerful in love and compassion will also heal Dave. I recognize too the many well wishes, positive statements, prayers and sincere support from sooooo many people. If at one time in his life, Dave thought he was just an unpopular band geek in high school, he has certainly grown in to a beloved man of great wealth now…rich in the form of respect, admiration and downright pure love.
PARTICIPATION
One way to accept something that is unacceptable is to partake in it and boy oh boy have we ever! Multiple doctor appointments, trips to infusion centers for blood and platelet transfusions, knowing the color of underwear your pharmacist wears, talking about it, talking about it, talking about it…living it day in and day out…there’s no way that this animal couldn’t be accepted or participated in. Now all this leads to where I sit at this very moment as I write this post. It is OKAY today. I am in a contained Unit where the staff is tremendously efficient and friendly. I see Davey doing well thus far. However this is only Day 2 or Day -6 in BMT countdown. I expect to see him react and show signs as the drugs (Busolfan) flow into the catheter port of his body eradicating all the bad bone marrow, and any immune system he has left.
…and I am participating in this with him, trudging through the Muck for as long as it takes!
I’ve always loved the color orange…now I know why
Meandering thru the Muck 