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.
Mick

Mick McKellar Update -- Day +433

Home safely, but just barely. Our battle with GVHD continues, however we seem to be winning a skirmish here and there.  I remain on prednisone and the full panoply of medications to simulate an immune system. The side effects continue (moon face, hair loss, really bad temper, screaming munchies, tremors, muscle cramps, etc., etc., etc.) for the duration. On the plus side, my skin has improved, my numbers look good, my eyes have not worsened, and the GVHD patches in my mouth have not spread.

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,

MIck

Mick McKellar Update — Day +430

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 Show

We 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...

Mick

Mick McKellar Update -- Day +417

Every Day: A New World

Stage 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 Fear

Fear (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.
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.  

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.

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.

God bless,

Mick

Mick McKellar Update -- Day +400

At times, it hardly seems it has been four hundred days since my blood and marrow transplant. At times, it feels like four thousand days...and I remember how I felt every second of every minute of every hour. Yet, I cannot remember the name of the Medco representative who called me less than two hours ago about a refill of my anti-cancer medication...

New Normals

Fatigue, fragility, and forgetfulness: These are concepts still very new to me. I used to sleep only 4 hours per night, now I need more and can easily cop a nap in the afternoon. Wee Georgie must have been a MacKellar, for none would describe any member of my family as fragile. Although I've lost bone mass (4% in one hip and 8% in the other), and I remain above normal for bone density, my health seems fragile and I must be very careful. Finally, my transition from exceptional recall to Swiss-cheese memory has been traumatic -- despite jokes about failing memory being normal for 62-year-olds.

The sudden GVHD rash of nearly a month ago now seems under control, but my numbers are all over the map...some up and some down. Much of this may be due to the ongoing changes in medications to deal with each new curve tossed my way by these red-neck Tennessee T-cells, wearing their miniature denim and flannel and tiny Doc Martins. As a friend told me, they know they are in the right neighborhood but they think they are in the wrong house. Every night, I pray they finally decide they are home and settle down to attacking foreign bodies and give up making renovations in my body.

In the still of the night...

In the peaceful dark of my room, however, I realize that despite all my complaining and kvetching, I am still here. I remain in full remission and my blood is still 100% donor -- the blood of my brother, Kevin.

I am still here, thanks to medical science, the power of prayer, and the Grace of God.

I have not written much and read little of late, because of problems with my eyes. Tonight's entry is short for the same reason.

Thanks to you all for your prayers and good thoughts. God bless you and good night,

Mick

Mick McKellar Update -- Day +379

It has been a few days since I posted more than a simple e-mail to anyone. The unfolding blossom of my journey and our situation is incomplete and difficult to describe.

Our jaunt to Rochester has taken us in directions unintended and down paths unforeseen. When we left on Monday morning (February 27), we intended to complete my tests, deal with the rash and head home on Friday. That changed when my doctor(s) finally examined me on Thursday.

The Package Arrives:

The tests on Tuesday actually painted a pretty nice picture of a fellow experiencing some problems, but well on track. My blood chimerism test shows 100% donor. (The blood in my veins is 100% my brother's blood...as it should be.) There is no indication of the BCR-ABL fusion protein in my system, which (I  believe) indicates I remain in full remission from the leukemia. My hemoglobin, white blood count, and platelets are all in good places. My kidney function appears normal. My pulmonary funtion study shows performance once again equal to when I left back in June, 2011. My bones are as dense as ever. This is all good stuff.

However, my liver function is abnormal and appears to require contination of treatment with prednisone. That's when the doctor finally gets a look at dusty, crusty old Mick.

But, He was Molting...and Looked Revolting...

Leaving was immediately cancelled. Appointments were made with opthamology and dermatology for Friday. Monday, I will see an endocrinologist about potential problems with diabetes (triggered by the prednisone). I will have another set of blood tests, and meet again with my doctor.

Complications

The eye doctor was pleased to report that GVHD did not appear to be directly attacking my eyes, although it was having a field day around them (including the eye lids). However, I now must take Restasis to increase tear production. In fact, I wondered if maybe I simply had no tears left. I add artificial tears several times per day.

His secondary diagnosis, although not earth-shaking, was disquieting: I have an early, dry form of macular degeneration in both eyes. He did agree with my previous decision not to have the cataract in my right eye surgically removed yet.

Then, I drifted on down to dermatology.

I was photographed from head to foot...literally. Posing in a photo studio in my underwear felt ridiculous, but it appears to be a major part of their medical records. There is even one face close up with my tongue hanging out. Oy, vey!

Then, the doctor took three skin biopsies! The red patch on my right foot may be a form of scleroderma caused by GVHD. It will take time before results are known. Yet, the worst was yet to come...

Wrap it up!

The wet wraps are back, the home version. Creams, wet pajamas, wet socks, a wet towel for the head, and a rag over my face -- place it all in a well-protected chair and cover with blankets for an hour twice per day. Oh, well.

I hope to have more (and better) information tomorrow. I wish I could write longer, but my eyes get tired easily, so I will retire for the night.

Thanks for the prayers and good thoughts.

God bless and good night,

Mick

Mick McKellar Update -- Day +374

We're still in Rochester, MN at the Mayo Clinic. I have to see an ophthalmologist about GVHD in my eyes and dermatologists about the awful rash from my scalp to my toes tomorrow, and then endocrinologists on Monday. I may even end up once again in "wet wraps." I swear I hear tiny T-cell voices chanting, "Paarfteeee, paarrteee!" The news said it snowed in the area today, but I know better...I was outside for a few minutes and it was my skin flaking away on the wind...yuck...

I will write more when I know more...maybe tomorrow...

As always prayers and good thoughts welcomed with joy and appreciated with vigor!

God bless and good night,

Mick