Mick McKellar Update -- Day +2408

Earworm

Today, I suffer from an self-inflicted earworm.

I had to stop after spending a disproportionate amount of time sorting through Facebook "newsfeed" items and online news items. After trying desperately to sort out diatribes from passionate pleas, fiery four-letter words from salacious swag, spun stories from outright lies, and silly spam from heartfelt feelings, I was ready for my extended vacation to Catatonia with a stop-over at Stupor.

I sat back and tried to wrap my mind around the hue and cry. Not for the first time, I was truly stunned by a wall of noise battering both vision and hearing. An urge rose up within me to cry out with the voice of Vesuvius: "Shut up!" And to pray for a sudden, stunned silence into which I could whisper a question: "If you were the last human on Earth, would you still hate?" As my imagination directed the movie for my mind's eye, Harry Nilsson's song, "Everybody's Talkin'" faded in as the soundtrack.

In my daydream movie, I suddenly leapt into the sky, pierced a rainstorm as I arrowed upward, banked off the chill northern winds, and chased that summer breeze across the ocean into a brilliant sunrise. As I flew, I sang at the top of my lungs:

"Everybody's talking at me
I don't hear a word they're saying
Only the echoes of my mind

People stopping, staring
I can't see their faces
Only the shadows of their eyes

I'm going where the sun keeps shining
Through the pouring rain
Going where the weather suits my clothes

Banking off of the northeast winds
Sailing on a summer breeze
And skipping over the ocean like a stone"

Alas, it was only a dream, and I am not Vesuvius.

Peace, love, and blessings;

Mick

Mick McKellar Update -- Day +2404

Man! That's Cold...

          My visit with Dr. Nguyen was a quick one. He looked at the now healed wound from removing the squamous cell growth from my neck, and explained why further work was necessary. Because this happened to me once before -- about 25 years ago -- I was aware of the need to take more tissue to assure that the cancer has all been removed. Some of the cancerous cells were right along the border of the tissue sample, so it seems likely that some cells remain.
           Rather than schedule a visit to an operating room for surgery, the simplest procedure is to spray the area with liquid nitrogen -- essentially burn it with cold. He simply aims a spray container at the spot and as the nitrogen becomes a gas, it draws heat from the tissue it touches, freezing it instantly. He shot me twice, just to be sure. A spot on my neck is now freezer burned.
          If you want to see the damage, check out this Ugly Photo. Honestly, it just looks like I leaned a little too close to a wood stove. It will blister and there will be a wound for awhile. I've had more severe burns. 
          Thank you for all the prayers and good thoughts -- I think we've got this one beat! Now I just have to figure out how to sleep when my neck hurts like the dickens...

Mick
          

Mick McKellar Update -- Day +2395

Call Me Job

The results are back on the tissue (i.e., supremely ugly lump of flesh) removed from my neck by Dr. Nguyen on August 24. Squamous cell carcinoma (skin cancer) is the diagnosis. Despite hiding from the sun and wearing copious amounts of sunblock, the spectre has raised its ugly head upon my neck -- and once again given me pause to reflect upon the effectiveness of precautions.

One would think, with the dearth of sunlight in this area, my need to take 5,000 units of vitamin D3 every day because I live like a vampire, and my singular support of the sunblock industry, that I might be spared a recurrence of this form of the Big C. (Yeah, I had it before, about 30 years ago.) Nonetheless, it’s back.

Someone once told me that the purpose of my life was to be an object lesson for those sporting rose-colored glasses. Although I doubt the preceding wisdom, I do seem to have a close personal connection with an inordinate number of medical professionals...

On September 21, I will be examined with a view toward treating my healing incision with liquid nitrogen. The idea, I believe, is to give the cancer a cold from which it cannot recover, and prevent it from seeking refuge in my lymph nodes. One hopes the Squamish hooligans don't travel, as thanks to cutbacks in immune support, the local sheriff is short-handed. I will know more after the 21st.

As always prayers and good thoughts are welcome, even encouraged. God bless you all,

Mick

Mick McKellar Update -- Day+ 2338

Sleeping On My Soapbox

I woke very early this morning, one of those sudden awakenings for no reason, that leaves you awake and wondering why it happened. My windows were bright with moonlight, tinged with tree shadows from the street lights below. I lay silently unmoving, drifting along the shore of the ocean of dreams and the wakeful sands of reality. Waves of possible dreams lapped against my mind, but the cold hand of a harsh thought dragged me ashore.

Fear poured over me, ice water cold rivulets ran down my spine and I shivered. A thunderous, yet whiny voice boomed up and down reality's ramparts: "Fake news!"echoed far and wide beyond the shore. Giant, glowing red letters appeared upon the ramparts, displaying this inquiry: "r u ok?" I lay my head upon the sand and wept...

As the last wisps of my unintended vision drifted away, I lay back in my bed and pondered possible meanings for what I'd seen, felt, and heard. Perhaps, I thought, I was experiencing withdrawal from convivial conversation and the luxurious flow of whole sentences. In essence, it was withdrawal from my attachment to the English language. I fear losing the touch of skillfully written and delivered speeches upon my ears, the joy of reading entire paragraphs instead of bytes and bits and snippets and spin.

One of the beauties of our language comes from the shades of meaning derived from use of just the right word in just the right place. Compare that to current dialogues comprised of a single phrase, littered with negative words, repeated endlessly (e.g., "fake news"), essentially a great hammer upon our ears. Consider the increased use of words and phrases imprecisely defined, subject to misinterpretation and misunderstanding (e.g., "Make America Great Again!"), essentially a yardstick with no markings upon its face. The word compromise isn't used now — it has too many syllables.

I am no scholar, but I love language. English is difficult because it seems not to follow its own rules. English can be tough because it's different in different countries; even in different parts of the same country. English is hard because it draws words from nearly all the languages of the world and integrates them into our working lexicon. English is a challenge because it's a living language, constantly changing, evolving, and growing.

America used to be like that. America is hard work — integration is never easy — but worthwhile in the long run. Why those lessons are currently being abandoned in favor of nationalism, discrimination, and a grade school vocabulary littered with letters for words... (r u ok?) is not entirely clear.

I want to believe that it isn't a character flaw in the American people, but a frustration born of misunderstanding and lack of communication which helps give rise to the fear behind the hate behind all the ...isms that plague our society. If we are to succeed, it seems only appropriate to begin with a solid knowledge of our shared language.

Maybe "lol" should mean: Learn Our Language

Mick
 

Mick McKellar Update — Day +2300

Small Milestones Matter

Today marks 2,300 days since my blood and marrow stem cell transplant on February 21, 2011. I celebrate small milestones like these, in part, because each day is a gift and I look for reasons to consider each day remarkable. It helps me find significance in each moment and reasons to live in the "now," rather than trying to dwell in the future, which isn't here yet — which makes living there an exercise in futility; or trying to live in the past — which remains fixed and unchangeable. I took a few moments to reflect on my own milestones — and those I missed...

I think we all must disappoint ourselves, at least on occasion. When I was much younger, I used to berate myself, beat myself up over missing a possible milestone or achievement. Sometimes it was a better score on an exam. Sometimes it was losing a promotion or a pay raise. Sometimes it was missing a chance at a special event or spending more time playing with my own children. I was truly awful at that last one, not because I didn't have the time, but because I didn't know how to play.

All of these mini-milestones began to accumulate, to collect, and to matter. So quickly it still takes my breath away to think of it, the time and opportunities swept by in a blur. Suddenly, I was a grandfather who had never mastered the art and science of being a father. Oh, although I'd supplied what safety and support I could afford, even some limited luxuries and technologies, wisdom was wandering far afield and foresight was focused far from the family.

You see, I wasn't living in my family's "now." I was focused on my future and reliving my past. One was pulling me forward and away from daily problems and the other was holding me back and stoking my fears of failure, illness, and uncertainty. I was the father who really wasn't there...

The More You Complain, the Longer God Lets You Live

Mostly, I complained. I grumbled and griped so much, and so often, that my family eventually tuned me out and just ignored my grousing — which infuriated me. I grew resentful and withdrew even further. By this time, I had access to technologies that permitted, even encouraged me to pull away and move my life online. As early as 1993, I was posting more to chat rooms and discussion lists than having conversations around our dinner table. The kids also had access, and they were drifting off as well — into the game universe and into the ether.

Time flew by, jobs were eliminated, and I found even more to bemoan and bewail until Wednesday, May 26, 2010 at about 9:00 AM. I was working when the hospital called and in a few seconds my life focused on the startling reality of leukemia. The past became immaterial. The future was startlingly foreshortened. Like it or not, I was pulled into my new "now." The initial view was grim.

Milestones, Beautiful Milestones

I'm afraid I've become a milestone junkie. I pay attention to each little step along my path now. I live as much as I can in the moment, because I am fully aware of the precarious nature of my existence. Today is day 2,300 since my transplant, and those are a small number of days compared to the 22,312 days of my life that preceded them. Still, 9.3% of my life has been lived because of the miracle of surviving with my brother's blood in my veins.

The first successful bone marrow transplant with a related donor was accomplished in 1956 between identical twins. Earlier attempts at treatment failed because the bone marrow was given by mouth. In 1958, the first non-related BMTs were done for workers after a nuclear reactor accident and the first studies of Graft versus Host Disease (GvHD) and the subsequent debilitation and wasting conditions were first documented. (See: Science Learning Hub). By the time I had my transplant, a lot of science had flowed under the bridge, but the current is still strong and deep. Much remains to be studied and patients still die for reasons not completely understood.

For all these reasons, I celebrate small milestones. They encourage me to remain focused on the moment and to remember the wisdom of these experiences: It is what it is.

Thank you for reading this far, and God bless you.

Mick

Mick McKellar Update — Day +2223

Waiting for Falling Shoes

In a couple of weeks, Marian and I once again will make our pilgrimage to Mayo Clinic for a substantial panel of blood tests, an increasingly uncomfortable test measuring my capacity to breathe, and a peek at the density of my bones. Doctors and nurses will poke me, measure me, and listen to what is going on inside me. They will ask myriad questions and offer few answers to what questions I can think to ask. I will offer my own list of observations; results of home testing — breathing exercises, blood pressure results, oxygen levels, and pulse counts; and observed changes on my skin, pain and stiffness in my joints, noises in my head and lungs, and side effects of medication changes. The usual stuff...

It's not as if I will wake up one morning and my left arm will be gone — nothing so drastic as all that — but I do wake up every morning with the singular task of determining what, if anything, may have gone wrong. This has been a fundamental change in my approach to life. I always considered those who were so focused on minute changes in their health and well-being to be hypochondriacs or worse, delusional.

Having grown up with bronchial asthma, hay fever, and peripheral neuropathy as constant companions, I considered myself a budding hypochondriac. Fortunately, a particularly pragmatic family doctor convinced me at age 15 or so, that if I thought I was a hypochondriac, I was not one — because they never admit to the problem.

"Reality continues to ruin my life." — Bill Watterson

I've often referred to chronic Graft versus Host Disease (cGvHD) as "the gift that keeps on giving." For some, the T-cells settle down and accept the host as their new home. My brother's T-cells are stubborn and will, on occasion make their presence known. About a month ago they held a demonstration in my mouth and throat, involving blisters and raw, red flesh. It lasted about two weeks and was very uncomfortable. I managed without additional medications other than a few extra acetaminophen tabs, supplemented with decaffeinated teas and soft food.

Watching has become my job. I watch my skin constantly and Marian watches the places I cannot see. A new blemish or flaky patch must be examined. Age spots drive me crazy. I cough a lot and I have to watch the color of whatever I cough up. I'm on snot watch, because goobers can tell a tale. Yeah, I have to watch the other stuff, too.

I watch people constantly. I seldom go out in public in the cold months as there are too many sick people wandering about. Still there are times I must go out, like to the hospital to see a doctor or a billing clerk. I see many billing clerks.

I try not to touch anything without my gloves. If someone coughs or sneezes, I scamper away like a great, slow moving sloth/squirrel running for its life. I look for signs of illness — excess tissues, red noses, watering eyes, chain-sucking cough drops, etc. Kids are walking Petri dishes, and I give them a wide berth. Remember: I'm not paranoid...those germs are out to get me.

I love life and I enjoy talking or discussing with friends. However much of life I must keep at arm's length for fear of infection. In many ways, this experience has fundamentally changed me and my world view. I am becoming more like today's denizens of social media. Why they choose to communicate impersonally, electronically, through such limited media, I don't understand. Talking on the telephone feels so personal now, I can hardly believe it. While typing words onto a screen for many to read and agencies without faces to record and analyze seems almost natural. It feels almost as though everyone is watching, yet no one can see me. I am at once exposed and invisible, in your face and totally detached.

And then, reality continues to change my life.

Good evening and God bless,

Mick

Mick McKellar Update -- Day +2190

Another Milestone

Tomorrow, February 21st, marks my sixth re-birthday. I thought not to reach this milestone, but here it comes — just now in sight down the road. Tomorrow marks the anniversary of my Blood and Marrow stem cell Transplant (BMT) in 2011 — the day stem cells and T-cells from my brother, Kevin were introduced into my own blood stream. Within weeks, my own blood and DNA were replaced by Kevin's blood and DNA, and I physically became two rather different people living in the same body.

Although we usually get along, you know siblings. When conflicts arise between blood and body, I know it immediately, because of the amazing, often terrifying side effects. This is known as Graft versus Host Disease or GvHD, an opportunistic and absurd disease, requiring constant watchfulness and lots of medications. I still hope we tire of fighting each other, and settle down and coexist in peace.

Anniversaries are Important

I spend my days on moments. Each golden moment is dearly purchased with coin irretrievable, unloanable, unsaveable, and unborrowable. Time may only be spent, invested, or wasted. Were I to keep a ledger of my time, I believe I would be aghast at how little was spent wisely or invested sagely, and how much was simply wasted.

Were hours spent sleeping not healing and comforting and energizing, I should want to never sleep. For most of my life, I did sleep less than my contemporaries — a mere 4 to 5 hours per night. Now, of course, I must sleep more, because daily living has a higher cost and healing comes only at a premium. Yet, spend I must, or invest in a future I will likely never see. I have become fascinated, perhaps obsessed with avoiding the anathema of wasting time — precious and perilously fleeting time. This leads to quirky behaviors, such as spreading thick layers of personal "wisdom" everywhere — often where it's not really welcome. For that, I apologize to one and all. It also leads to impatience, especially with young folk who rush about in a frenzy and yet paradoxically, feel as though they have all the time in the world. Maybe they do, but I have learned that I do not.

There is a growing selfishness within me that drives me to pay special attention to anniversaries. My own birthdays have become mile markers on my personal highway. I don't fear them, or ignore them as many do: I treasure them and measure them against my accomplishments; always finding the latter wanting by comparison. It's an unfortunate habit, and a waste of precious time.

The Gift

The gift of my leukemia, its subsequent treatment, and my close approaches to death's threshold has been learning to live one day at a time. Living as much as possible in the moment, gives one a new perspective on time and its value. I try not to waste it, but I no longer worry about saving it.

Goodnight and God bless,

Mick