One Step Forward...Last night, I was given a taste of how insidiously mean-spirited is this condition I daily battle. Fully hydrated and medicated to the eyebrows, with Marian in the van, I ventured to the (Historic) Calumet Theatre to see the Calumet Players' production of You Can't Take It With You. My pockets were laden with tissues, my inhaler, lip balm, eye drops, and a filter mask (should anyone show signs of coughing in my direction). I kept my distance from everyone, touched no one, and sat at the end of a row. I did not go backstage or downstairs. I reveled in the rocking chair of readiness — solid and assured.
The show was marvelous. At once, I was excited, proud, and envious. My friends and colleagues in the Calumet Players were professional, entertaining, and absurdly amusing. The play was well-acted, well-directed, well-costumed, and well-set. Despite a nearly overwhelming urge to "hang around" and congratulate my friends, I dutifully lead us out the door immediately, without giving a single hug or shaking even one hand. Feeling a little empty because of my expeditious exit, I still congratulated myself on having sampled my old life without triggering serious consequences due to my immune-suppressed state.
It seems I may have prematurely patted myself on the back. An hour later, I felt extremely tired and my head hurt. My eyes were tearing fiercely and feeling at once sticky and gritty. I retired late and sleep did not come easily last night. This morning brought more sticky eyes, more tears, and tinnitus louder than any recently — loud enough to unbalance me and cause me to stumble once this morning.
Although things have improved by this afternoon, it is clear that the Calumet Theatre still has the ability to reach out and touch me — Borg fashion (Resistance is Futile!) while I am on prednisone to treat Graft vs Host Disease (GVHD). I had hoped that only couple of hours in the old building, restricted to the orchestra section, would be harmless. Lesson learned with little or no lasting damage.
As Conditions Go...Despite the hiccup caused by my outing, there is much to be positive about — things are looking up on the epidermal front. My GVHD rash appears to be in retreat, thanks to putting on creams, popping prednisone pills, and praying prodigiously. My numbers were good enough on the last visit to Mayo Clinic that testing has been reduced to every two weeks. Still, the prednisone side effects continue to roll through my life, leaving lost hair, hurt feelings, and empty snack packages in their wake.
I am supposed to increase my calcium intake, to help preserve my bone density and structure. This will be more important as I continue to take medications that reduce the calcium content of old bones. Taking a leap beyond logic, I tried vanilla flavored almond milk. I like it. I discovered that it is excellent in morning cereal and ice cold in a glass. However, I did not like it mixed into my decaf coffee. The dark chocolate almond milk is also very good.
Yesterday I managed to walk my 2.5 mile course through Laurium and planned to repeat the performance today. However, a mid-day cold rain shower and residual effects of lasts night's experiment kept me indoors. I finally broke-in the walking shoes I bought on sale in Rochester, MN, and definitely want to put some miles on them. Here's hoping that Monday will be walker-friendly.
As Time Goes By...Today is day 441 since my blood and marrow stem cell transplant — a gift of life from my brother. May 26 will mark the second anniversary of my diagnosis with Philadelphia Chromosome Positive Chronic Myelogenous (or Myeloid) Leukemia (CML). In a very true sense, my old life truly ended on May 26, 2010 at 10:00 AM, when the hospital called with the diagnosis and my ticket to ride. Repeated attempts to reenter that life and lifestyle have been rebuffed and rejected. Much has changed. Many things that were critically important to me have lost their luster and previously unimportant details of everyday life have become precious to me.
Good days seduce me into planning ahead and frighten me into re-opening my old, worn, bag of worries. Not so good days remind me that the Mick Show can be cancelled at any time and serve to reinforce the one-day-at-a-time philosophy I have endeavored so carefully to adopt. Of course, I make appointments, reservations, and plans, but I try hard not to make others' success dependent upon my presence.
When I wake up tomorrow, I will know I have tomorrow. If I don't wake up tomorrow, I will know that life has changed again...and I will have eternity to work it out. However, that decision is not mine to make. What I must choose is what to do with the days I am given, and I find that I am jealous of every minute of every precious day. Each night, I pray: "Thank You for today. May I please have tomorrow?"
Thank you for your prayers and good thoughts. Since the transplant I have had 441 tomorrows, and I sincerely hope for many more.
God bless and good night.