Saturday, May 26, 2012

Mick McKellar Update — Day +461

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 Up

Today, 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 Awfulich

I 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.


Sunday, May 6, 2012

Mick McKellar Update — Day +441

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.