Outside my window, twilight has stolen all but roof tops, tree limbs, and the glowing lights of the city. The cars seem to pass in solemn review, tapping out a march on the patched and cracking pavement. My hands are warm from the mug of fragrant Earl Grey, and the warm tea relaxes a busy schedule from the forefront of today's memories. Ensconced in sweater and laprobe, I ponder the day and it's revelations.
Marian and I endured another endless night with little or no REM sleep, thanks to my friend the dry cough. We arrived, bleary, yet punctual for my blood draws and tests. The place was a bee hive...busy, busy, busy...I prayed they would get to us quickly, because today was special -- today we would meet with the head of hematology and the lead doctor on my case. Finally, I would get a few answers!
The tests were generally very good. My hemoglobin was still low at 8.4 (which would help explain my energy level -- as low as I have ever felt it). However, my WBC was 7.1, my ANC was 4.92, and my platelets were back up to 157,000! On Saturday, I will receive a couple of units of whole blood. That ought to boost the blood vessels and uplift my capillaries.
Meeting followed meeting, going over my medications and dosages, looking for interactions or problems, and discussing all the little stuff that has been bothering me. Then came the big event, an examination with the main doctor.
The well dressed gentleman, entered the room. I immediately shook his hand and remembered that I looked like an unmade bed. He shook Marian's hand (she looked very nice, as usual). My apprehension was peaking as he reached his desk, spread out my file, and sat down. Gulp!
He grinned broadly and said, "You are amazing!"
(Dead silence ensued as my severely fogged synapses reshuffled to attempt a response.) He went on to explain that indications are I am likely fully engrafted and production rates are up all across the board. Even more amazing was the lack of GVHD indicators. Of course, none of this means anything regarding what it might do tomorrow, but "Things look good." They will still do the test to verify percentages of my cells versus Kevin's, but he feels there will be no need for a booster. Graft versus Leukemia can happen, even without substantial GVHD activity.
The conversation continued, leaving me feeling better about the situation. He also prescribed some cough medicine (with codeine) in hopes I can get some sleep tonight. It was a positive meeting, that outlined lots of work yet to do. I am handling the pain on my own, but they are ready to assist.
Marian and left to get ready for tonight. Four "families" (patient and caregiver) decided we would pool resources for a real corned beef and cabbage dinner. It was delicious and Marian's dessert choice was a great hit. I am still limp as a dish rag and tired beyond description, but I feel better about the outcome of this journey than I have in weeks.
Pondering recovery
As my mind mulched old memories tonight, I remembered some of the days after my burning accident. My folks told me that the doctors were not sure I would ever be able to walk upright on my misshapen and tortured feet, at least not without assistance. So, they immediately began designing prosthetic shoes and leg braces for me to learn to navigate. I remember that everything hurt. The shoes, especially, were painful and heavy.
Months of therapy and torture in those devices reside in my memories, but I have no desire to relive that pain. One day, I simply said, "No, I won't wear them." To my utter amazement and joy, my parents said OK, but you do have to wear shoes. We searched local stores for a pair that hurt the least and I began again. This time, my teachers were my Mom and Dad. The pain was less, but there remained the problem of little of no feeling from the bottoms of my feet.
The orthopedic devices attempted to translate balance signals to the braces on my legs, relying on the pain in the braces to help me stay upright. I handled the pain, and I fell down.
On my own, I took a different approach, relying on my (at that time) very good eye sight to watch for problems and make corrections. In time, my eyes became the balance organs for my feet. Now, of course, I carry the characteristic shoulder hump of someone who has spent a lifetime looking down. My foot shuffle is patterned exactly after my mother's, a kind of "duck walk." I wear out the outsides of my shoes because I tend to roll back and forth, like a ship at anchor, when I walk, and my tread tends to be heavy. But, there are no braces.
When someone is healing, but not cooperating with the given protocol, maybe one should offer some flexibility. Not all the answers are in the technology, sometimes we need to dig deep inside ourselves and pray that our caregivers will support our decisions...even at age two or three.
Two more cards came today -- two more slices of home. Thanks everyone for your phone calls, cards, e-mails, prayers and great good thoughts.
Our Love and God's Blessings,
Mick