Today is the worst I have ever felt in my life, and the nurses say it will get worse yet. I have reached my nadir, where my immune system is completely gone. As depressing as that sounds, I still have great hope that the light I see at the end of the tunnel is not an oncoming train...☹
Today, Marian and I were in Rochester Methodist Hospital from 9:00 AM CST, until 3:00 PM CST, for testing, a followup injection of Methotrexate and then a badly-needed platelet transfusion. I doubted I could feel worse than yesterday, but apparently there are depths of fatigue I have not yet plumbed. Today felt like the worst flu I've ever experienced...times at least a factor of ten. I can barely lift my feet from the floor to walk around our room. Yet with Marian’s help, she and I walked to and from the hospital today. When the going gets tough, I guess we just shift down in the lowest gear and grind forward. I do believe we could have used one of those orange triangles, you know...the slow moving vehicle signs on my back -- along with a bumper sticker that says: “Warning, this aging vehicle stops at all roadside seats to rest awhile.”
And we are just getting started. The nurses and doctors tell me it gets worse, there on my internal battlefield, and does so for quite some time. There will be some good days, when there is relative peace on the battlefield, but there will be days of Armageddon, when it will seem like the world is coming to an end.
The stay here is a very long one for allogeneic transplants, because it can take up to a month just for the new cells to "engraft," plant themselves in the empty marrow fields and to begin producing cells. Then, that's when the arguments between the new cells (who do not feel at home) and my old homeboys get serious -- Graft vs Host Disease. What I am going through right now is primarily the aftermath of destroying my old, diseased immune system and the actions of Kevin's T-cells to track down and destroy fugitive cancer cells.
My primary job is to avoid infections and simply stay alive. Apparently, my secondary job is to make Marian’s life as miserable as possible. This battle makes one almost completely self-centered, as each movement brings new and interesting challenges. Remember Tim Conway’s little old man on the Carole Burnett show -- how he toddled and minced about, muttering under his breath? Well, that’s about the speed we walk about and that is about as communicative as I get at times. She wants to help, would carry me from session to session if she could, but I have to put her off to prevent any backsliding. As inviting as the proffered wheel chair appears...there lies failure.♿
Each minute is a battle, each hour is a victory, each new day is a glorious gift. Just opening my eyes is the clarion call to battle for a new day, and my prime enemy is fear and doubt. Daily as I am offered the use of a wheelchair to make movement easier -- each day I refuse, knowing that each laborious step is a reaffirmation of my spirit and my way of fighting back against the leukemia.
The love I feel from Marian and from all of you is the stuff of life for me. The good prayers and uplifting words from friends like you, give me the ammunition I need to fight back.
I am once again at the low point on my power levels, so I say good night and God bless you all,
Mick