Mick McKellar Update — Day +1955

Mental Inventory
One of the perfunctory perquisites of my limited capacity to actually accomplish tasks in the physical sense, is the lavish, but lukewarm luxury to perform herculean tasks in the dusty old attic of my mind. In other words, it is time for another dust up and inventory.

How does one inventory such an old attic? I read my journal entries for the last six months or so and try to remember what was going on when I wrote the words and penned the poems. I try to understand the purpose and the importance of images I included in the journal. This also gives me a chance to edit out some of my more egregious errors (grammar, not memory). The attic is located upstairs in my Grand Library, wherein I hope to find the supporting documentation for the wild variety of attic items collecting their first layers of dementia dust.

I know I've mentioned my attic before, full of storage boxes, piles of documents, shadows, smoke, and lots of mirrors. This year, I've noticed that the dust accumulates a little faster and clings a little longer than in the past. I have to work much harder to read those documents, to open those receptacles, and to polish those mirrors. There are more shadows and more smoke than I remember, making it harder to find things. I also noted problems with creaking and leaking.

Someone (me?) dragged a well-worn recliner over by a gable window — a great place to rest and maybe take a nap while sorting through memories and images.

Who Wrote That?
Reading my own words after sufficient time, feels like reading them for the first time — like the author is someone else that I may or may not want to get to know. The me of now meets the me that used to be — the experience can be unnerving.

For example, I am editing my journal entries for the first 100 days after my blood and marrow stem cell transplant. Marian and I were required by Mayo Clinic to remain near the hospital and facilities for at least 100 days after an allogeneic BMT. We were in Rochester for 4.5 months, during which time I wrote daily journal entries about my experience, among other topics, and shared them by email and Facebook with friends and relatives.

Playing Telephone
I often tell tales about my experience during this time of my life. Some would say that I repeat myself often and kindly refrain from complaining about it. When I compare the content of my verbal recollections with the details in my journal, I find that like Snow White, I drifted.

Mostly I find that the order of events has blurred a bit and some of the details have either been edited out or been embellished (a very minute amount!) to make the story more entertaining. It's like the old game of Telephone we played as kids (and adults), To play someone whispers a short story or comment to the first person sitting in a very large circle. Each person then whispers the story to the person on their left as accurately as possible, until we come "full circle," at which time the last person relates the story. It is compared to the original and nearly always is vastly different.

It is human nature to relate tales imperfectly over time. This is one reason important facts were installed in rhymes and stories before the advent of easy access to physical data storage.

I forgive myself for drifting, but now it is time for me to shovel the dementia dust from the records and polish them up to look new.

New Tools
I have begun using a new tool in my editor's kit. Text to speech readers have come a long way from the first attempts and many are available as browser plugins or apps. Some are free or ask for a small donation. I'm using several plug ins because I use several browsers. I've become comfortable with one that reads text in my Firefox browser. It's voice has a British accent, but I kind of like that. It reads my text as I follow along and this helps me focus and identify common errors and clumsy sounding sentences. It's a useful tool.

It also saves the text session as an .mp3 file which I can download and save.* The reading is not perfect, but good enough to share, and it makes my poor scratchings more accessible to those who are reading impaired.

Of note as well: I just passed day +1950 — the year I was born. No deep meaning here, just an interesting side note. For those who follow along, my medical situation has improved slightly. The warmer weather and reduction in pollen has made breathing easier. I will be going back to Rochester in August, mostly for another CT scan so they can take a look at the shadow in my left lung and decide if further investigation is needed. Interesting times, indeed!

Thanks for your prayers and good thoughts! God bless and good afternoon!

Mick

*You can try to download and listen to an audio file of this Update. (No guarantees, never tried this before!)

Mick McKellar Update — Day +1912

March to My Sea

Today is a day for which I've been waiting five long years, and yet as I look back, I wonder if General Sherman felt the emptiness I first felt when looking back. His campaign was successful, if ruthlessness and destruction, uprooted lives and lost resources, savaged lives and scorched earth are acceptable weapons against an implacable enemy.

This morning, my doctor called and said I could stop taking Sprycel (dasatinib), the enormously expensive and toxic medication that controls Philadelphia Chromosome Positive, Chronic Myeloid Leukemia (CML). For the fifth year in a row, my tests show no indications of either the leukemia or the fusion protein that flags its presence. My Chronic Myeloid Leukemia with lymphoid blast crisis and subsequent chronic phase remains in complete morphologic, cytogenetic, and molecular remission. We have an apparent victory!

At What Cost?

The apparent victory (they NEVER say: cure) comes not without cost. The leukemia undermined my castle walls and weakened their foundations. The opening bombardment, CHOP chemotherapy rattled the walls of my immune system, but left them partially intact, and Gleevec medication held great promise of controlling the leukemia. Less than 3 months later, the leukemia was back in blast crisis mode and set fire to my castle walls. Four more courses of chemotherapy (some injected directly into my spinal column) beat down the walls of my immune system, but did not destroy them.

At this point, I had to decide: Surrender and give up life in about 8 months or fight the enemy via a blood and marrow stem cell transplant (BMT). I chose to fight. Marian chose to fight. My brother, Kevin became my ally and chose to fight. All paid a price for gallantry.

First came conditioning: reducing my castle walls to mere rubble — not completely gone, but ineffective as defense. Then comes an introduction of new building materials (stem cells) and new attack troops (T-cells). The stem cells begin growing and building new walls, while the T-cells hunt down and destroy any remaining cancer cells. Things are looking good

Then, the T-cells go wild and attack my skin, causing a rash covering 90% of my body. The pain and the fatigue is nearly unbearable! But my allies rally around and six days of life as a steroid burrito (inside and out) calm the troops and they relent. I barely catch my breath, when they launch another attack — on my liver and on my kidneys. Toxins cannot filter out of blood and fresh water cannot flush toxins. I'd become a garderobe and the middens were full. Sir Prednisone and the plumbers cleared the toxic mess, but it was nasty, sick business.

Twice more we fought the skin attack with the home version of the wet burrito steroid defense (plastic sheeting and soggy pajamas), ongoing liver attacks were rebuffed by Sir Prednisone and the Hyperglycemic Corps, and small amounts of territory were lost to Peripheral Neuropathy (hands and feet). In late 2012, Pancreatitis celebrated the end of a millenium by the loss of my Gall Bladder.

It was about this time we noted a dramatic drop in lung function, connected to a hospital visit for an infection. My breathing capacity decreased from >50% to <25% in a few months. I learned about a new enemy: Bronchiolitis Obliterans — Graft versus Host Disease of the Lungs. It had stabilized and seemed happy with territory claimed. FAM treatment (a cocktail of meds) stood guard, but additional treatment, called Photopheresis was not available locally and we could not afford to commute twice a week to Rochester, MN. It involves removing my blood, treating it with chemicals and exposing it to UV light — to keep the T-cells quiescent. It doesn't always work, but it was not available in the UP.

In 2016, the attack of a coronavirus — a direct frontal assault on my lungs — has reduced their capacity to ~18%. I now require supplemental oxygen to breathe comfortably. As far as I know, Photopheresis remains out of reach (and I haven't even discussed with BCBSMI whether or not it's covered), and oh yes...there is a suspicious shadow on my CT scan. We're hoping it's related to a previous infection and just watching it for now. Yikes! Gadzooks!

Beautiful Battlefields

As I look back over the battlefields of five years, I barely remember the pain (and still cannot comprehend the cost). What I remember is the wonderful warmth of help given by friends and family, and the gentle glow of prayers and good thoughts throughout the difficult journey. General Sherman may have looked back upon smoke and ash — the detritus of war — and taken grim satisfaction from terrible success. I can look back, and see past the pain to the love beneath.

It's been a tough road, worth every step, and the path leads over a hill yonder. I wonder what's on the other side...

Mick

Mick McKellar Update — Day +1900

Time Really Flies

As a child, I remember how slowly time seemed to move when I was waiting for something fun to happen, like a holiday or a birthday to arrive. Time also crawled by when I was bored, such as waiting in a car for Mom or Dad to take care of business at a store or doctor's office. This was especially true if I didn't have a book with me, and we were stuck with Dad, who instructed us to be silent and to sit still. Both of these instructions were, of course, immediately violated. Five kids could not sit quietly any more than we could do a time-step or sing in harmony. Time dragged as pressure built towards a fatal flare up. Just as screams of "He's touching me!" and "Mick was looking at me!" were about to ring out, Mom would come back to the car and my Dad would relent as the noise level returned to something near cacophony levels.

Time began speeding up for me earlier than it did for my siblings, because I was nearly always buried in a book. Reading time was never long enough and books were always over too soon (unless they were terrible). Time flew by or so I thought. Imagine my surprise when time sped up yet again — with the arrival of our children. It seems they were born on one day and saying goodbye the next day.

Still Faster

I have learned that time moves even more quickly than I could imagine. Today is the 1,900th day since my blood and marrow stem cell transplant! 1900 days have sped by since my re-birthday in February 2011, and although I've endeavored to live every minute of my gift of life to the maximum — even to the extremes of writing updates and daily journal entries to codify and remember my experiences — the days are a blur. It is difficult to savor a draft one is chugging at full speed!

I note the passage of the day, and I celebrate the grand gift and God's grace which permit me to even be here. So much has changed in so short a time.

It is what it is.

Yesterday, as a young doctor was pushing a needle and catheter between my ribs to relieve my labored breathing, he was apologizing for the pain I must be feeling. Yes, I told him that there was some pain, but how could it be avoided? "it is what it is." I said. And then I thanked him for the relief I knew was coming at the end of the pain. He was silent for awhile, and began asking about my life. There was no more talk about pain or apologies. It is what it is.

Another pulmonologist, Dr. S, was explaining my CT scan to me. He showed me the areas where fluid was built up and we talked about relieving some of my breathing difficulties. But then, he shifted gears and talked about my disease. "You have severe bronchiolitis obliterans, and there is nothing can return the lost tissue." He seemed uncertain how to say it, so I said it myself: "Bronchiolitis obliterans is a terminal illness that will likely kill me." He explained that we need to keep infections from activating the GvHD that causes my disease. "It is what it is." I said.

Imagine: I could die from terminal B.O. (giggle)

He wasn't done. "There is also a shadow on the CT scan of your left lung. It could just be some infection left from the February coronavirus episode." We are going to wait and see if it is still there in six months, and not go exploring for the moment. As before: It is what it is.

Sunshine

Today has been a beautiful day! The temperature is near 60 degrees, the sun is shining, and I have hardly used oxygen at all today — even while having breakfast in a restaurant and walking around with Marian in Target. Mostly, though I have spent today resting for tomorrow's journey home. No additional bleeding, infection, or lung collapse has been noted. So it seems my repairs were successful and it's time for this errant home boy to return home. The day is, of course, speeding by — even as I write this short update. After all, it is what it is.

Special thanks to everyone who prayed and sent good thoughts. I swear I could sense your uplifting spirits supporting me while I was repaired once again. Thank you all!

Good afternoon and God bless,

Mick

Mick McKellar Update -- Day +1893

A Taste of Terror

I believe that everyone has tested themselves by holding their breath as long as possible — to see how long they can endure. If you have tried this, you know that silent imperative, the sudden mind-shout that says: "Enough, breathe already!" You gasp for air and feel that freshness rush into your lungs, just in time to stop the little ache in your muscles and buzzing in your ears that threatens worse to come.

For most of you, perhaps the fortunate ones, that only sample the taste of the terror which lives beyond the body's initial demand for oxygen, this is your only experience down that path. A few have pushed it further, and an unfortunate few have been dragged further down that path by circumstances such as drowning, choking, or blocked air passages. Some few have also seen the terrible shade of blue on your own skin that signals cyanosis, a bluish discoloration of the skin resulting from poor circulation or inadequate oxygenation of the blood. All of this lies beyond the edge of the abyss.

The McKellar Abyssal

The magic number for oxygenation of the blood is 88%. When my oxygen level dropped below 88% while on a treadmill during my last visit to Mayo Clinic, I stepped into a new world. It's a world of home oxygen generators/concentrators, tanks and regulators, tubes and cannulas — life with a hose in your nose. Also, somewhere around 87 — 88%, one slips over the edge of a steep cliff and the oxygen level that has slowly decreased to that point drops precipitously. This sudden drop leaves very little time to take any action.

Back on February 4, I walked into Aspirus Keweenaw Hospital, because I was having trouble breathing and needed an doctor's opinion. I've been chronically short of breath for a couple of years, but this time the gasping would not stop and it felt like I was breathing smog or very thick air. I walked from my car to the desk, and slipped over the brink. In seconds, I was Calumet colors (blue and gray), gasping like a fish out of water, barely able to stand, and my vision was narrowing. It all happened incredibly quickly. After my adventure we now know it was a virus clogging up the works, in a system already at the edge of the abyss.

Beyond the edge of the abyss is pain. Fingers and toes tingle and then catch fire. Larger muscles ache terribly, as though clamped in a vise. Chest muscles and the diaphragm convulse, shaking and aching. Lungs burn and my heart drums in my ears, growing ever more rapid until I learn what heartache truly means. A visit to this wonderful place requires only that I forget the rules momentarily by rushing up a few stairs or getting up to answer the phone too quickly. Life on the edge can be tricky.

Living on the Edge

I now live on the edge of the McKellar Abyssal, trying to navigate along the cliff edge and not step over. While writing this update, I sit with my MacBook and type in a comfortable position — without any oxygen support. I even get up and slowly (very slowly) trek into the kitchen to reheat my tea. Anything more athletic than that pretty much requires additional oxygen. I can even run a shallow deficit for a minute or two, but then I must stop and wait as my lungs labor to bring balance back. Growing up as an asthmatic child and an overweight adult, I know when my oxygen level is down, but I also have a fingertip pulse oximeter in my pocket to double check my senses.

An oxygen concentrator sits in my kitchen, with a 50' hose and a nasal cannula. Most of the time, when I need oxygen, I draw it from the machine, which also humidifies that oxygen to slow drying of my nasal passages. I have a tank of oxygen next to my bed because it's on the second floor of our house, and although the hose reaches my room easily, I cannot reach the machine to shut it off when not needed. So, I take 5 to 10 minutes to climb the stairs and refresh my oxygen from a tank.

We're also experimenting with small tanks of oxygen for trips outside the home. Rather than dragging a larger tank down the road behind me, I have a small, light weight tank with a pulse regulator on top. The pulse regulator only releases oxygen when I take a breath, which extends the range of the small tank from about an hour of steady use to 6 to 8 hours. So far, the system seems to work OK, however, weather has been too cold for me to spend much time outside. My lungs seem to have an aversion to chilly air — whether or not it's crisp or clean.

A Big Test

This coming weekend, we shall test this system by traveling to Rochester, MN by car for a very important checkup. We leave Sunday, so I can spend all of Monday running the gamut of tests at Mayo Clinic from pulmonary function to bone marrow biopsy. We hope to return home on Tuesday. Doctors at Mayo Clinic will decide if I can stop my anti-leukemia medication, as I have been in full remission for five years. We are taking only tanks with us, so this should be an interesting, if slightly frightening adventure.

I will publish another update when the results are in and we make it safely home again.

Good afternoon and God bless!

Mick

Mick McKellar Update -- Day +1847

Magical Mind Mentors

I was daydreaming about with whom, among Americans, I would like to spend a day, just talking. If I had to choose two -- three-way conversations stay fresher and flow better -- who would I choose?

After thinking long and hard about my own penchant for gloominess and love of stories, as well as a slightly oblique sense of humor, I chose Abraham Lincoln and Robin Williams. Let me explain why.

Why Abraham Lincoln?

"If I were two-faced, would I be wearing this one?"
"I don't like that man. I must get to know him better."

In my heart of hearts, I truly would love to have known the man from whom such wonderful, powerful, and succinct phrases flowed. His mind was not hampered by the iron bands which bound the minds of those educated by the leading institutions of the day, but grew free and untamed. He spoke the common man's language with the perspective of one whose voracious appetite for learning was never sated.

Lincoln knew adversity and weathered failures. He had a singular capacity for cutting through the erudite fog of seasoned purveyors of horse hockey with tightly focused homespun wit and just a touch of wisdom. He understood the intrinsic value of honesty: "No man has a good enough memory to be a successful liar."

I am not certain what I would ask him, as Lincoln's quotes and writings sound self-contained and complete; he leaves nothing more to say, but everything more to do. His level of equanimity seems unrivaled. However, given that opportunity, I suppose I would tell him a bit about my own life and ask him to share his own experiences that might parallel them or offer insight. Mostly, I would want to listen because…

Lincoln was a storyteller.

Why Robin Williams?

I was fascinated by Robin Williams from the first time I saw him perform on television. Without a doubt he had what must have been the fastest mind on the planet. At one time, Jonathan Winters held that spot for me, but Williams was even faster. He could be frenetic and laser focused.

James Lipton's interview with Williams on Inside the Actor's Studio, was a tour de force -- Williams at his best. Lipton said: "His gift was the most mysterious of all gifts, it was genius. Genius is inexplicable. … You can't teach genius."

I would have loved to just talk with him about life. He was from Detroit, as am I and there might be some shared experiences to help us relate. The zaniness was not consistent, as he remarked several times in interviews -- the energy level was simply too high to maintain. And he wasn't afraid to talk about death. He said, "Death is nature's way of saying, 'Your table is ready.'" I would want to listen because…

Williams was a storyteller.

As my fantasy ended, it dawned on me that the next generations of humanity will also be searching for storytellers, but will be hampered by the noise of the Internet and social media. How will young minds, overstimulated by constant input from such a diverse selection of competing sources ever develop the capacity to sort, to select, and to synthesize what is important and meaningful for themselves? Will they be as fast as Robin Williams? Will they be as grounded and honest as Abraham Lincoln?

Both men coped with tragedies. Both men pushed themselves beyond normal physical limits. Both men looked long and hard into the abyss. Both men achieved extreme fame and made their contemporaries think about the human condition. Both men paid with their lives, though in vastly different ways. Perhaps they might have offered some hope, some perspective on how to swim in the ocean of noise.

I would have liked that.

Mick

Mick McKellar Update -- Day +1843

A Tale of Two Teeth

I've been de-fanged. Both of my upper canine teeth are gone. The first broke while eating oatmeal and blueberries for breakfast at Rochester Methodist Hospital. Oddly, I ordered blueberries instead of brown sugar in a misguided attempt at eating a healthier breakfast. The de-fanged part of my tooth dangled for five days, falling out into a plate of food at a crowded dinner table. No one fainted, but there were concerned looks at the meatloaf resting innocently on my plate.

The second fang also began to wiggle while in Rochester, but rattled about, loosening incrementally until yesterday morning at my dentist's office. She was asking if I needed Novocain when the remarkable thing popped off into her hand. I felt I had been abandoned, as though I was a sinking ship.

I find it ironic that, as I become less and less physically able, I grow more and more to resemble a hockey player when I smile.

Both teeth broke at or below the gum-line so the roots had to be capped. All drilling and filling was done without Novocain. This was not my first anti-painkiller rodeo: I had seven teeth drilled and filled while a student at MTU, by Dr. Aldrich in Hancock. He charged $7 each if you didn't require Novocain. As a student suffering dental problems, the price seemed right -- and I had a secret weapon -- my white room.

As a very young child, I learned to go to my white room, where I could observe intense pain, even sense it, but would not be directly impacted by it. The white room is in my Great Library and has seen a great deal of use in the last five years. The white room preexisted my Great Library. I first went there when, at 18 months old, my hands and feet were badly burned by boiling water. I go there now when the powerful medications I take cause distress or when the pain in hands and feet from peripheral neuropathy grows too intense to be blunted by a single 500mgTylenol.

It's not a perfect solution, of course. Graft vs Host Disease has managed several times to generate levels of pain that pushed past my defenses, and left me screaming until multiple injections of morphine and, later, fentanyl gave me peace. Fortunately, those instances are rare, but they have given me perspective to let me relegate daily aches and pains to their proper levels.

What, if anything can you take away from my toothy tale? Consider this: After the last couple of weeks, my bark is truly worse than my bite…

Good night and God bless!

Mick

Mick McKellar Update — Day +1840

Are We Forgetting How to Remember?

I saw a notice of the death of Umberto Eco, a semiotician, philosopher, essayist, and novelist. He wrote The Name of the Rose. Something he said in a 2011 interview with the Guardian resonates with me.

"I think a book should be judged 10 years later, after reading and re-reading it. I was always defined as too erudite and philosophical, too difficult. Then I wrote a novel that is not erudite at all, that is written in plain language, The Mysterious Flame of Queen Loana, and among my novels it is the one that has sold the least. So probably I am writing for masochists. It’s only publishers and some journalists who believe that people want simple things. People are tired of simple things. They want to be challenged."

I've been accused, perhaps deservedly, of writing difficult poetry and prose. I remember being told to write at 8th grade level or below, to allow for readers to have better comprehension. Of course, it seemed prudent when writing documentation to use simple, straightforward language. However, like it or not, technical language and jargon creep into documentation; indeed must be there to coordinate with processes and choices based on those ideas. It cannot be avoided.

In my poetry and prose, I search for and try to use the right word for the meaning I am trying to convey. At times, I will delve into the realm of archaic words and resurrect a seldom-used, but succinct word. For example, I like Cerulean blue. It's not azure. It's not sky blue. It is darker than both, yet not simply blue. If it fits, and the color is important, I will use it. My father's eyes were not simply blue, or even ice blue, but glacial blue — the pale, watery, chill, ancient derivative of sea water blue. They could chill your mind and freeze your soul. That's why I use specific words.

Although I agree with Eco that people want to challenged, I take it one step further. People need to be challenged. Eco once commented (from an online essay: Letter to my grandson), that people are losing their memory because of the Internet and storage on computers. They no longer need to remember. They no longer want to remember.

I want to remember.

I attended a Lutheran grade school. We were required to memorize five Bible verses every day and be prepared to recite them when classes started. Now, that might have been a religious exercise, but it taught me how to memorize quickly and efficiently. More importantly, it challenged me to find a way to remember.

Building and maintaining a memory palace became part and parcel of my everyday practice. A memory palace or mind palace is a method of loci or mnemonic device to store and retrieve information. At the time, I didn't know about the Roman and Greek development of the practice. I built my Great Library over time and as it grew, it became increasingly grand. The walls shone with the burnished beauty of mahogany panels and walls of crystal that shimmered with sunlight and moonlight. The floors of onyx and walnut travertine were polished and dust-free. The ceilings were sky blue paintings of the skies high in great mountain ranges. In many ways, it looked a lot like the Ford Rotunda that burned to the ground in 1962. I remember the great glass dome, the steel and marble walls, and the wood panels around displays. My Great Library was as huge and even more glorious!

In school, I found information in brick and mortar libraries, from books and periodicals printed on paper — or I saw and heard it first hand or from those who knew and told me. Nothing was instantaneous; and with my lousy handwriting, little that I wrote down was clearly legible. I had to remember. Now, like nearly everyone else in the modern world, I can type in a search term and information flows across the screen of my computer. So, why remember?

My recent adventure in hospitalization reminded me why it is so important to remember things. I was put on an air ambulance to Rochester, MN without time to reference my records. I had to remember important things about my medications and my recent medical history. The Internet could not help me, nor could my (now dead) desktop computer. My Grand Library is still mostly there, but because of chemotherapy and high dose medications, I can barely find anything.

I also believe that the Internet, which should have been a boon to the storytellers among us, is actually a bane. A friend of my mine once defined the Internet as "an ocean of information — one inch deep." Of course, one can still drown in an inch of water and up-wellings of bad water are still dangers lurking upon that ocean. The ease of the search, the speed of the response, and the volume of information (good and bad) have lured folks away from the sonorous voice of the storyteller and the carefully crafted word images of the poet.

If we don't use our own, incredibly powerful, totally free, super computers (our brains) we may lose the ability and the skill to use them. That frightens me.

Eco also said something that echoed with my own experience:

"All the stories I would like to write persecute me when I am in my chamber, it seems as if they are all around me, the little devils, and while one tugs at my ear, another tweaks my nose, and each says to me, ‘Sir, write me, I am beautiful’."

I've had a lot to think about today. I hope you will also think about it.

Good day and God bless,

Mick