"Be careful what you ask for, you may get it!" That phrase echoes forth from the earliest days of my youth, and for good reason...there is truth there, which will not be denied. I've been praying for some sign of GVHD, some sign that the battle has begun and Kevin's redneck T-cells are on the move. The most common first symptom is (for want of a better term) Epic Diarrhea. My epic has begun.
It arrived at ~1:45 PM, with friends: Nausea and incredible bone pain in my legs. I think I can safely guess that another battle has been joined. Of course, old self-diagnosing Dr. Mick has been wrong before (cough, cough)...
In other medical news, the allergy team has decided to try a progressive desensitization to bactrim -- the other medication they prescribe to prevent the pneumonia which can arrive as part of the GVHD package, which comes in a pill instead of the nebulized liquid pentamide that caused my asthma attack and ongoing hacking cough. I guess they figure my parents may have been right about the sulfa drugs -- 60 years ago -- but things may changed. I pray they are right. For 10 clinic days (two weeks) I will receive a progressively larger dose of bactrim. If no side effects occur, I will go on that drug for the next six months.
Tomorrow, I have at least six appointments with doctors and coordinators, to go over my progress and re-evaluate the success of treatment so far. I will report on results as they become available.
So many battles on so many fronts
My conversation with the allergy doctors today about the source of my sulfa allergy information, opened yet another door to my distant past -- concerning injuries to my feet and hands.
Time Travel Again
Recent episodes with night terrors (in the last five years) have restored repressed memories of that terrible night of fire and pain when I pulled a boiling water vaporizer into my crib...which had a rubber sheet. Pockets of boiling water formed where I stood and screamed and left my hands and feet severely burned. I now remember the pain and terror of that night. I was 18 months old and I can remember the faces of at least 10 doctors and nurses leaning over and trying to stop the writhing of my body. It felt as if my feet and hands were on fire and I needed to get away from them.
I remember my mother's face -- stricken, with tears and red, swollen eyes that searched my own for something. I also remember my father's "stone face." It was a face I would see only a few times in my life. When pain or anger or sadness would build to nearly impossible levels, he would wall it up behind the stone face and grow very cold. That night, his eyes, ice-blue, were fixed on mine as if he could by sheer power of will, wall up my pain.
As a young man, I became more like him when rage or anger built up. I supposed I boxed up pain and anger. According to my mother, I was not a serious child and student, I was positively grim. My mother worked with me to learn to release pain and passion, anger and resentment, in words...in poems.
Not just the pain
This afternoon, however, I also remembered the fatigue I felt -- even at 18 months of age. I remember just wanting to go to sleep and leave the pain behind. In many ways I feel the same fatigue every day now. As my condition progresses and despite successes, the weariness bites into my mind and soul.
I beat the fatigue in 1952, but it cost me my childhood. I was never a child again. My Mom said I was reborn as a little old man. By age three, I spent most of my evenings alone, reading. I almost never played games and preferred the company of adults. I seldom slept more than four hours per night after that, perhaps afraid of those little slices of death.
As for today:
I learned to compartmentalize and deal with severe pain at age 18 months and can still handle it -- the doctors stopped all pain medication at my request two days ago. But the fatigue -- nothing can be done -- one must find the strength to push past it, every time. I fear the fatigue. I fear it will steal my life away when I am not looking -- that I will lie down for a nap and simply not wake up. Only my trust in God allows me to sleep at all.
Why am I talking about all this stuff?
I think the trip to death's door changes us. We value life so much more and we try hard not to waste any of the time given to us. But, for some it leaves a lingering shadow of fear that it might just slip away. I can say with certainty there is no amount of fear or pain that will cause me to just let go...I know, I've been there. But beware fatigue and loss of will to live, don't you or a loved one die lost, invisible, homeless, alone, and hopeless, by just giving up. So many live near that brink now, it scares me. Some, like I did, might just "wall up" and show you their stone face.
Look for them, you can see the fatigue in their eyes and in their body language. Do the old and the sick grow tired of living, or is that just our interpretation? Think about it.
More cards and e-mails came in today with funny stories and great jokes. Thank you, thank you, thank you.
Looking forward to a traditional corned beef and cabbage dinner tomorrow night. I don't know how much I can eat, but I will savor what I can.
All my best, and blessings to you all for your prayers and good thoughts.
Mick