Mick McKellar Update -- Day +783

To have great poets, there must be great audiences.
-- Walt Whitman, poet (1819-1892) 

Imperfect Reflections

I am an antique mirror. Old mirrors do not reflect crisp images -- they have a hazy, golden shade and suffer splotchy areas that manifest darker than the rest. Although my frame feels frail, weakened by the ravages of toxins and time, I still hang around, reflecting on events and scattering what light I can. I wait to discern whether I will be judged trash or treasure...

Reverie and Revelation

On Wednesday, a Facebook friend posted an evening meditation from Set Your Heart Free:The Practical Spirituality of Francis de Sales which suggested adopting an attitude of gratitude and offering as thanks "the silence of this night."

As I reflected on this, in my ancient and imperfect way, it dawned on me that I haven't known silence in all my memories, as far back as I can remember. When my tinnitus isn't hissing or whistling in my ears, I can hear my heart beat, the bones in my neck move, the sound of air rushing through my nasal cavities, even my eyes moving in their sockets. It is never silent in my head. I wonder what silence sounds like?

It was only recently that I discovered that other folks don't live with the raucous clangor of grinding joints and digestive processes, punctuated by the "thump, thump, thump" of their own heartbeat. I thought I was hard of hearing, but it's just too noisy inside my head.

Journey of Sun and Shadows

Our drive to Rochester, MN and Mayo Clinic on Tuesday, April 2 was both pleasant and exciting. Pleasant because the sun shone all day. Exciting because deer were on the move, seeking better forage...which apparently is nearly always on the other side of a highway. We had a perfect score...no hits, all misses.

Image from warmer days...

Wednesday, April 3 was the Day of Tests. Blood and urine samples were taken just after 6:00 AM. At 7:00 AM was my bone marrow biopsy, followed by a Bone Mineral Density Test, a Pulmonary Function Test, a CT scan of my chest, and removal of some really ugly toe nails by a nurse practioner in the podiatry offices. Besides having holes poked in me, my chief complaint was scheduling a pulmonary function exam (which required 3 minutes of stepping up and down on a stair) within two hours of the biopsy. All that movement made the biopsy site ache like the dickens.

Thursday, April 4 was the Day of Consultations. My medications and my current condition was reviewed and examined. I met with my oncologist/hematologist and with a pair of lung specialists. Not all test results were back yet, and what they had was a mixed bag.

Friday, April 5 was the Day of Escape to Home. Our journey was once again sunny and pleasant. Traffic was a bit heavier than before, but the roads were good and it seems the deer were mostly resting and playing chicken with other drivers.

Results

My doctor called Thursday this week with final results from the bone marrow biopsy. My "bone marrow biopsy shows normocellular marrow with normal trilineage hematopoesis. No morphological features of CML or dysplasia were noted. Chimerism studies show 100% donor DNA." This means my marrow was clear of any indication of leukemia and full remission continues. My blood DNA is still 100% my brother Kevin's DNA, and therein lies the dark side of my deal with the disease. Most BMT recipients trade one set of problems for another and hope that the new set is manageable and (at least for a time) non-fatal.

My blood work and tests showed marked improvement and stability. Blood counts are great, most are even within normal limits. My skin rash has disappeared (except for the recalcitrant scleroderma rash on my feet) and even the peripheral neuropathy problem with my hand, legs, and feet seems to have receded a bit.

My lungs, however, are another story. Officially, my "CT scan shows evidence of subtle mosaicism compatible with chronic infectious or inflammatory disorder. PFTs show close to 500 cc of drop in [his] total lung capacity and also a compatible and mild drop in [his] spirometry. [His] diffusing capacity has also decreased slightly." In other words, my lungs are incrementally worse than four months ago, and the scan shows the damage the progressive fibrosis is doing to my lungs. As I am not a candidate for a lung (or any other organ) transplant, this is of concern to me.

Plan of Attack

I remain on immune suppressant medications, with all the restrictions that implies, although my prednisone is now only 5mg every other day. We have to return to Mayo Clinic in four months for follow up testing and possible oxygen titration tests (these involve a treadmill and sound awful). I continue to take three medications to help with my lungs, but refuse additional inhaled steroids for the nonce, as the current damage occurred while already on steroids (prednisone) and they seem to do little to stop progression.

Supplemental oxygen would make breathing easier, but I prefer to work on an increased regimen of progressive exercise, to try to improve my ability to use what capacity I retain. Because I am able to maintain an O2 saturation at or above 88%, even when on walk-about, my insurance will not cover portable oxygen. My O2 levels drop quickly when I move, but they also recover quickly when I rest. Problem is: At 88%, things get a bit weird and fuzzy, and I need to rest immediately. Going beyond that limit is a lesson in pain I do not wish to learn over and over again.

Anniversaries

February 21, 2013 was the two year anniversary of my blood and marrow stem cell transplant, which we celebrated quietly, looking through our frosted window panes at the blowing and drifting snow. May 26, 2013 will be the three year anniversary of my diagnosis: Philadelphia chromosome positive, chronic myeloid leukemia (CML). I will be a three-year survivor of my third brush with the big C. There will not be a cake and candles...I don't think I could blow out the candles anymore.

However, candles or not, this ancient mirror will shine on that anniversary, with a light born of love, prayers, and God's grace. I thank you all for your prayers and good thoughts that blossom with a radiance to dispel the dark shadows that haunt my days and dance on the edges of my dreams.

Good day and God bless,

Mick

If words are to enter men's minds and bear fruit, they must be the right words shaped cunningly to pass men's defenses and explode silently and effectually within their minds.
-- J.B. Phillips, writer and clergyman (1906-1982)