Saturday, April 28, 2012
Though I grow weary of the battle from time to time, each sunrise is a wonderful victory and each new day a glorious gift from the grace of God. I am blessed.
Our old Focus was not so lucky. Sometime shortly after crossing the Mississippi River today, it tossed a brake pad from the left front disk brakes. I drove more than 350 miles, trying not to touch the brakes (metal against metal makes an awful sound) and searching for an open repair shop. We found not one. Our injured little car is resting peacefully in our driveway, where it will remain until we limp to the repair shop.
Meanwhile, I must get some rest. Nine hours of driving is a tough pill to swallow, even without the stress of trying to drive without using the brakes -- to limit the damage to the brake mechanism. Also, we will be without transportation for a few days. Well, the doctors said I need to get even more exercise...
Thanks for all the prayers and good thoughts. I credit them with getting us home safely.
Good night and God bless,
Posted by Mick at 11:46 PM
Wednesday, April 25, 2012
We made it back to Rochester by late this afternoon and checked in at Gift of Life Transplant House (South) — the same place we spent our first 100+ days — back when I had my blood and marrow stem cell transplant (BMT). I'm here for blood tests, exams, and consultations, most of which happen tomorrow. One consultation takes place Friday morning, and we hope to head home on Saturday morning.
Walking, walking...The intrepid walker (and sidekick) walked downtown tonight to grab a quick supper at Bilotti's Italian Village. It was a good thing we walked. I ate a 7 inch specialty pizza...all by myself. I needed the walk back to Gift of Life, just to work off some of that "OMG! I ate the whole thing!" feeling. Still, it had to be early — no candlelit, late dinners tonight — because I must fast after 7:00 PM (CDT) until my blood tests tomorrow morning. That always makes for a relaxed and fun-packed evening. Tonight, however, I shall simply rest and wait for the tide to go out.
Tomorrow — the Results ShowWe have been battling the GVHD symptoms — using medications, creams, and even wet wraps to battle the "Rash Sinister." Tomorrow's blood tests and exams should provide some feedback on our success or failure of our campaign.
I will endeavor to report our progress (or lack thereof) as information becomes available. Meanwhile, we continue as before — one precious day at a time.
As always and ever, Marian and I treasure your prayers and good thoughts.
Good night and God bless...
Posted by Mick at 9:01 PM
Thursday, April 12, 2012
Every Day: A New WorldStage 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 FearFear (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.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.
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.
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.
Posted by Mick at 1:58 PM