Every Day: A New World
Stage three, the 1-year-plus period after BMT, seems to be the playground for Chronic GVHD. Every day I wake up is a gift from God, and for that I am thankful.
Each new day also brings the possibility of new symptoms and improvement or degradation in the old symptoms. I currently take 30mg of prednisone each day to help with immune system suppression and must tolerate its usual side effects. This treatment means that many of my old contact protocols and limitations are back in effect as I attempt to avoid infections, etc. My blood glucose has been "holding the line" this time, and that means I don't have to inject insulin.
I am still fighting a skin rash that stubbornly refuses to disappear completely. We are doing modified wet wraps at home and continue with the skin creams/lotions. I am hypersensitive to sunlight (UV rays) and likely will be for the rest of my life. However, I am not a vampire and my skin does not sparkle (in case you wondered).
I had blood tests yesterday morning, but have not heard from the doctors about the results or any further changes in medications or treatments. The tests are weekly again (ouch to my pocketbook), and I once again wait upon the numbers...my personal, life-or-death lottery...
Dauntless or Daunted?
I despise becoming brittle and delicate. Growing up, although I longed to be "rough and tough and hard to diaper" like my friends, my folks must have considered me rather fragile. I have no memories of rough-housing with my father, though I remember him wrestling with and tossing about my brothers. Not that I didn't try: I remember crucifying myself on a pile of lumber recovered from a shed, falling from the roof of a neighbor's garage, and poking my arm through a storm door window while playing Superman. However, these solo attempts at giving my mother early grey hair were few and far between. I wanted to play at games and have adventures with other kids, but I was never very good at it.
Even in high school, my varsity team activities were swimming, tennis, and debate. Except for being drilled occasionally with a tennis ball, it's hard to get injured...well, maybe my feelings were hurt from time to time...
Despite my insular existence, over the years, I came to think of myself as tough as the scar tissue on my hands and feet -- both dependable and durable -- pushing through each and every new challenge/illness/loss like a big, plush tank -- soft on the surface with redundant systems, solid steel frame, and thick armor well hidden beneath all the padding. Well, armor gets heavy, steel can rust, and systems can malfunction and fail...leaving you on the battlefield...a large, heavy, rusty, and immovable lump.
Day before yesterday, I decided to take the old tank out on maneuvers, and rumbled about 2.5 miles. It was a grey day, temperature about 34 degrees F, a few snow flurries in the air, a 10-20 mph wind in my face most of the time -- a perfect day to roll out the old tank for a trek about the neighborhood. Imagine my chagrin when I limped home on very sore feet, only to endure an hour of nasty leg cramps later.
The Intrepid Walker now becomes the Tenuous Tenderfoot, afraid of nothing...except cold drafts, pollen, sunlight, falling down, and nearly every germ or microbe on the planet.
I have become delicate again. I have become breakable. I fear frailty, fragility, and failure, for where they flower, fear of fatality follows. I fear becoming frail as shadows on glass, frangible as fading friendship, fragile and empty as a blown glass ornament.
Fighting the Fear
Fear (and 30mg of prednisone) is what often wakes me up in the night, and I deal with it using an odd one-two punch.
First, I pray. Prayer is first, front, and center, for where God walks, fear flees.
Second, I often try to remember the Litany Against Fear (familiar to Frank Herbert fans and the
Dune novels), the Bene Gesesserit incantation that calms their minds in times of fear and stress:
I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past, I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
The imagery is amazing and it helps me understand the difference between danger and fear. I know the danger. I know it lives in my blood and my bone, waiting to attack skin, mouth, eyes, or liver. And yet, it is equally aggressive against any cancer cells it might find. Like fire, it can preserve life or take it away, it can wait as embers in the dark or suddenly flare to devastating effect, it can warm your heart or burn your soul. Like fire, GVHD seems to have a life of its own and a non-human intelligence as logical as the universe is logical. That it seems tenacious and insidious, crafty and unrelenting, is the fear whispering in my ear.
Once past the fear, faith permits me to leap beyond the logic of the disease and to grasp with both hands the precious gift that is today and the promise that is tomorrow.
"Deep in the human unconscious is a pervasive need for a logical universe that makes sense. But the real universe is always one step beyond logic." -- Frank Herbert, science fiction novelist (1920 - 1986).
Finally...
I am happy to have a chance to write again and hope to do more as my eyes improve and the time I can read a computer screen increases. Thanks for your good thoughts and prayers.
God bless,
Mick
