Another Anniversary...Before I begin my long overdue journal entry, I feel obliged to mention the reason I am celebrating May 26, 2012. Two years ago, at 10:00 AM, I received the news that I had leukemia. Today, I count myself as a Two Year Cancer Survivor! It was several days (and a host of genetic tests) later that I was "officially" diagnosed with Philadelphia chromosome-positive, Chronic Myeloid Leukemia (CML). Three months later, it became Acute Myeloid Leukemia (blast crisis), and is now, once again, CML — but that is another story.
A life that began in January 1950, ended at 10:00 AM, May 26, 2010 as those three words, "You have leukemia," arrowed from my cell phone into my already compromised consciousness, totally prepared to hear "diabetes," not "death." You see, I was raised during a time when a diagnoses of leukemia was an automatic death sentence — and those moldy, old tapes were playing over and over again in my beleaguered brain on the ambulance ride to Marquette General. I had been sick for a long time, probably six months or more, and with a white blood count over 330,000 — I was knocking at the door of the hereafter. To be honest, I think it opened once or twice, but the security chain was in place and I was too tired to force the issue. Thanks to God's grace, thousands of prayers, and the wonders of modern medical science, I survived both this narrow escape and the blast crisis in October 2010 to receive a gracious and heroic gift of new life — a stem cell transplant (BMT) from my brother, Kevin, on February 21, 2011 — a miracle that happened only 461 days ago.
Although there are days when the treatment feels worse than the disease, like now — when my brother's red-neck, Tennessee T-cells are having a party in my skin and there's an increased presence of the newest wrinkle: peripheral neuropathy in my feet and hands — I am alive to feel it, treat it, endure it, and kvetch about it. Alive is good. Alive is victory. So, I am celebrating...indoors, of course.
A little adventure outside to mow some grass appears to be the impetus for my latest adventure in GVHD...
Wrap UpToday, when I opened my eyes at 6:00 AM, my old Palm TX shouting Reveille at me, my first thought should have been: "Thank you, Lord, for another day!" Instead, I immediately focused on determining how I'd become so tangled in my bed sheet and blanket. I must have done a dervish dance in my sleep.
The Mad Russian: Ivan AwfulichI suppose one bad joke deserves another: My demonic GVHD rash is back...and it itches! Little wonder I had trouble finding a comfortable sleeping position, as my frazzled nerve cells tracked that twitchy itch, on its sporadic tour of my epidermis. Even the wet wraps (yes, we're doing wet wraps again...) do little to belay its insidious crawl, its terrible tingly prickle. I want to scratch it. My fingers twitch with the unrelieved desire to drag my fingernails over irritated and reddened skin for that instantaneous and ephemeral relief. The creams help a little, but it still feels like I'm wearing a hair shirt on a hot day...
My doctor has increased my Prednisone dosage from 20 mg/day to 30 mg/day — a true set-back in our effort to slowly reduce my intake of this steroid which reduces inflammation and suppresses my immune system. We're hoping to begin the tapering once again, as soon as this "flare up" of the rash is under control.
Shine a little light on me...Apparently, this latest adventure in GVHD is not solely the result of tapering my steroid treatment. Despite great caution — filter mask, SPF 50 sun block, long sleeves, dark glasses, broad-brimmed silly-looking hat, and gloves — an hour in the sun mowing grass appears to be the trigger for this latest flare up. Both my medical condition and several medications have made my skin ultra-sensitive to sunlight, and I have been ordered to stay indoors as much as possible. I considered mowing the grass a chore. Now, I would consider it a privilege. I work in my garage (see picture) and go for walks on extremely dreary days or during twilight hours.
The "eyes" have it...My online reading and writing have been curtailed because of my eyes. They seem to tire easily when staring at glowing screens. Marian and I went to see The Avengers Thursday evening. I really liked the movie and even enjoyed (after a fashion) the 3-D effects. My eyes were red and sore after the show. So, lately I have spent more time reading — on my Nook e-reader (it doesn't glow) or in books from my rather extensive library. One positive effect of the memory loss resulting from the cumulative effects of chemotherapy and the accumulation of 59 years of reading (I began reading at age 3) is a general fuzziness about storyline, plot, and characters in some of my favorite old books. Re-reading them is a pleasure and a voyage of re-discovery.
On this day of celebration, I thank everyone who has prayed for, and is praying for me and for Marian — who may indeed have the toughest job of all — caring for an ill-tempered, curmudgeonly old bear with a headache and an unreachable itch. Your prayers sustain us and your good thoughts give us hope.
God bless and good day.