Mick McKellar Update — Day +2139

A Blare of Trumpets... and A Sour Note

I planned to end my updates for 2016 with a long list of blessings: I am still alive. I have family and friends who care about me. My grouching, grumping, and grousing have not yet alienated my wife and my kids (I think...). I am nearly off supplemental oxygen. I no longer take Sprycel ($10,000 per month). The list goes on...

An air ambulance emergency transfer to Rochester Methodist Hospital was not a positive development, and neither was the addition of another set of medical bill payments for the local hospitalization — a full year's worth of deductible and co-pays, all wrapped up in ribbon and string. Still, on balance, I felt good about 2016.

Then Comes the Sour Note

Three days ago, in the evening before bedtime, Amanda came charging down the stairs asking for basins, buckets, and bowls. The ceiling in her room had opened like the proverbial, biblical firmament. It was raining in her room! A search in the attic and crawl spaces showed no water reservoir, and there had never been a leak in the roof on the east side of our home. It is a protected section of our 12X12 roof (very steep). It sheds snow like crazy, and ice only develops on the very tips of the eaves, falling like miniature spears between our house the neighbor's garage.

I sped outdoors, expecting to spot where a satellite, meteorite, or flying pig had crashed through the roof, and found an amazing sight: Along an irregular, wandering line about a third of the way up to the peak, was a large ice dam, running from the front edge of the roof to the rear edge of the roof, with what looked to be up to a foot of snow piled above it. I'd never seen anything like it on either the eastern or western side of our upper roof.

We had replaced the western side in the last year with what little remained of our retirement funds, because it had been severely damaged by Keweenaw weather and prevailing winds. The eastern side was sheltered and was judged to be in great shape. Our attic is insulated and not heated. We had not changed our heating practices. So apparently, somehow the recent storms coming from the east and south east, the high winds, the warm days/wintry mix/freezing rain combination worked to create this meandering ice dam. Recent warmer days melted the snow, the ice dammed it up, and it found an entry point or two.

An emergency call to Dan Riutta Construction brought one of his workers yesterday, who gamely climbed a ladder from my neighbor's garage roof and used a sledge to hammer the ice dam to smithereens, and a roof rake to pull the snow down. How he was able to cling to a ladder in 30 mph winds and heavy lake effect snow is beyond me. I was outside for most of the time, and I am now paying for my indiscretion with flaring attacks of peripheral neuropathy and sore, irritated lungs. I have enough pins and needles in my feet and hands to supply a sewing shoppe.

Amanda's ceiling is a soggy and stained mess. It will be spring before I can test it for strength and begin to think about sealing and painting. I don't know what can be done about the roof. I hope the leaky spot can be identified and sealed with roofing compound.

I have no clue what the bill will be for snow and ice removal, but it sounds like a few more meals of cold cereal or PBJs may be in order during 2017.

Thanks for reading along. Goodnight and God bless!

Mick

Mick McKellar Update -- Day +2087

Paranormal...Almost:

A Tale of Timorous Terror and Pedestrian Politics 
 
Waking up this morning was an almost terrifying experience. As I floated up from dreamland to what passes as reality in my vicinity, I noted that my sheet and blanket were slowly retracting -- moving downward -- by themselves! For several shockingly slow microseconds, my slumber-saturated consciousness stood half-dressed in the dark hallways of my mind screaming: “Ghost, arrrghh!”

Running footsteps echoed from behind me, and I was spun about to face...right-brained me -- in a frumpy and tattered, striped and worn bathrobe. He slapped my face: a mask that somehow simultaneously shouted “terror” and “vacancy.” As his hands gripped (painfully) my shaking shoulders, he admonished me in his annoyingly avuncular voice. Apparently, I’d propped my now aching, injured leg on a large pillow last night, and had kicked the pillow off the bed in my sleep. The plummeting pillow pulled my covers from the bed. No para. Merely normal.

Underwhelmed, I woke up and voted.

Mick

Mick McKellar Update -- Day +2085

Mr. Workhard and the Staples

Yesterday and today were fine examples of late autumn wonder days. Especially when the thermometer was flirting with 70℉ in the early afternoon. Never one to sit inside when the great weather calls, I spent most of yesterday and a big part of today out in the garage, getting ready for the long winter days when I wished I had cleaned up the space and made room for the inevitable accumulation of cold weather detritus and quick access to snow removal tools.

Yesterday was a good day. Marian was gone to a bowling tournament and I had time on my hands, so I could slowly begin to organize and put away tools, parts, and supplies I left out because I was too tired to clean up when making emergency repairs. Cardboard boxes tend to find their way into the garage until I can break them down and either burn them or package them for trash pickup (if they are plastic coated).

Since yesterday was a success, I thought today had to be better because I had Marian’s help. We were really clicking along, boxing stuff to give away, bags to recycle, items to finally trash, and storing items for next summer’s garage sale. Then came that awful moment when we have to wiggle the bicycles into the basement corner for the long cold winter. Marian rushed to open the back door to the basement and I (slowly) started to walk Amanda’s bike from the garage to the back yard. Easy, right?

Maybe Not So Easy…

I carefully kicked up the kickstand, pushed her bike out into the road and maneuvered it around the car and walked it up the left side of the driveway. I forgot about her tricky kickstand, which decided to suddenly drop downward and hooked the hem of my jeans, nudging me off-balance on the edge of the driveway (over the culvert), and tipping me over. I did a slow motion fall into the ditch next to the drive, with the bike attached to my right leg.

This would have been embarrassing enough, but after I disentangled from the bike and managed to stumble back to my feet, I felt something wet trickling down my right leg. A quick look down confirmed a couple of large patches of red forming on my jeans and turning my white sock a very pretty pink. Great! I managed to get a scratch on my leg!

I slowly lumbered into the house and to the bathroom, so I could clean up the mess and put a bandaid on the scratch. Further observation showed both steady bleeding and substantial swelling on my right shin. This was not good. So I bellowed for Marian advising that I needed help to clean up the scratch and see if a larger bandage was needed.

Marian took one look, became rather pale and suggested a quick visit to the emergency room at Aspirus Keweenaw. So, I stuffed a wad of toilet paper into my pink sock and off we went...she drove.

A Big Surprise

I climbed up on the emergency room gurney and pulled up the right leg of my jeans. After the nurse rinsed my leg, I had my first unobstructed look at my “scratch.” There must have been something very sharp on that kickstand, as it neatly sliced through my skin to open a nasty looking wound on my right shin. Dr. Patton and the emergency room nurse (whose name, to my never-ending shame, I cannot remember) cleaned up my wound, massaged out forming hematomas, and stapled it closed. The scratch was 8 inches long and required 18 staples to close.

My right shin now looks like it has an 8 inch zipper on it. Now, if you will excuse me,  I must go elevate my zippered leg…

Mick

Mick McKellar Update -- Day +1999

Milestones and Legacies

We recognize and celebrate milestones. It's how we measure both the passage of life and our collection of legacies. Many are extremely personal, as is tomorrow's milestone. It's one that seemed impossible more than five years ago.

Saturday, August 13 (tomorrow) is the 2000th day since my blood and marrow stem cell transplant (BMT) on February 21, 2011! On that day, I received the gift of stem cells and T-cells from my brother Kevin. Those cells engrafted into my bone marrow and began producing the necessary blood cells to keep me alive.

The event itself was remarkably benign and rather boring — I was party to the delivery of a couple of bags of cells attached to the port in my chest, an examination to make sure I wasn't allergic to anything delivered, and a quick trip back to the Gift of Life Transplant House — surrounded by the unmistakable odor of creamed corn. The fragrance was from the chemicals used to preserve the cells. It didn't make me hungry.

I have often written of the journey of the next 100 or so days, in preparation for going home in June 2011, and of the many battles since coming home. My dance with both acute and chronic Graft versus Host Disease (GvHD) is ongoing, and the stories about the bewildering variety and potency of my medications would bore you to tears. We've had some very close calls, and additional problems and surgeries since 2011, but with the grace of God and the prayers and good thoughts of my friends and family, I am still here, and Marian is still taking care of me. I often wonder how she does it. I'm not sure I could have put up with me.

I've lived one-day-at-a-time, always with the proviso that any day could be my last. Although that threat remains, it seems distant now, after so many gifts. Problems still pop up (Tuesday night, I broke another tooth — I think some of my meds weaken them), but we fix what we can and march forward.

Lessons
Here's a few things I learned along the way to day+ 2000:

•     The physical cost is immeasurable.
•     The financial cost is ruinous.
•     The emotional cost is enormous.
•     I can survive prodigious pain, and fortunately, morphine can reduce that pain to tolerable levels.
•     Life is precious and worth fighting for.
•     Friendship and love are real superpowers!
•     Don't waste a second of your life, because it can slip away in a moment.
•     Keep your fear in your back pocket. If it bothers you, sit on it.
•     Hate is an expensive hobby that creates only pain and leaves you empty, hollow, broken.
•     Never go to bed without saying, "I love you," to those who share your life.

Losses
We made many friends at Gift of Life, and we lost more than a few. This caused many long nights brooding over why I was spared. Somehow, I managed simultaneously to feel excited, happy, grateful, blessed, confused, frightened, sad, loved, and lonely. At times I thought my heart might explode. Add high-dose steroids to the mix (prednisone), and my behavior could, at times, be frightening. It was a time for tough lessons.

Well, I just wanted to share my milestone, and to jump up and down and point at my growing life legacy. Thanks to you all for your prayers and good thoughts, and for continuing to share this journey with us!

Good night and God bless!

Mick

Mick McKellar Update — Day +1963

Some Days I Amaze Myself...
Other days, I put my keys in the fridge. I have to assume the same is true for most everyone I know. Best laid plans and all that. One of the side effects of trying to live one-day-at-a-time is the compulsion to make every second count. I suppose it stems naturally from up close experience concerning my own mortality. Hence stems my desire to discover and implement methods of battling the creeping deterioration so prevalent with chronic Graft vs. Host Disease (GvHD).

There also remains a nagging fear that someday the medical establishment will add the word, "Syndrome" after my name...

An Opportunity
The sudden arrival of Keweenaw Summer provided a golden opportunity to once again stretch my limits. Each day for the last week or so, I've shut down the oxygen compressor/concentrator at home and functioned as best I can without supplemental O2. Yesterday was the first day that I was able to abstain from any supplemental oxygen for the entire day! I didn't run any half-marathons or go jogging with Dante, but I did hang around and bother the repairman from Keweenaw Overhead Door as he made repairs to our BBM — Big Blue Monstrosity. Our garage door is 16+ feet of solid wood core panels and with sticky rollers, ruined pulleys, and maladjusted springs was almost impossible to lift. As he worked, I putzed about, asking questions and annoying the poor fellow. I washed dishes and did a little housework. I was slow and methodical and did not need an O2 supplement.

I put the hose back in my nose at bedtime. However for most of today, I'm off oxygen again — although I had to use bottled oxygen when we went up to Sacred Heart for a Rosary. One cannot be too careful. As I sit here now, hoseless, munching a cinnamon graham cracker and sipping cold coffee from breakfast, I am aware of how lucky I am to be breathing at all. It makes the mundane moment miraculous. It teases me to make today so awesome, yesterday gets jealous.

Still thankful for all your prayers and good thoughts, I remain a happy man. Good afternoon and God bless!

Mick

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

Mick McKellar Update -- Day +1826

Fifth Re-Birthday

Mayo Clinic reports state my Chronic Myeloid Leukemia with lymphoid blast crisis and subsequent chronic phase remains in complete morphologic, cytogenetic, and molecular remission.

I love it when they talk medical!

Five years ago today, doctors and nurses at Rochester Methodist Hospital opened up my Hickman Catheter (the true way to a man's heart) and delivered two bags full of golden stem cells and redneck T-cells (complete with tiny flannel shirts and Doc Martins) from my brother, Kevin. Two important things happened: I received a gift of life, and I smelled like creamed corn for three days.

All of my kvetching and sharing since that date aside, my second chance at life happened then, and there. So I celebrate today with this quick update and maybe a little chocolate ice cream later. Life has been challenging since I started down this road, but it is life and it is a miracle, each and everyday as I wake up and realize I have another day to spend with family and friends.

Just sharing the joy and thanking you all for your prayers and good thoughts!

God bless,

Mick

Mick McKellar Update -- Day +1821

How can I smell a rose,
with a hose in my nose?

Testing, Testing…
     Guess who didn’t pass this afternoon’s test? My doctors were unwilling to simply accept the “one-off” results from yesterday, so today the Mayo Clinic giveth and it taketh away. My arterial blood gasses test this morning revealed my O2 at 88.2%. Uh oh...
     So, they put me on a treadmill and tested my oxygen saturation under dynamic stress. Under moderate stress and load (walking quickly uphill) I dropped below 87% and all the red lights and beepers went off at once. It seems I now need minimum oxygen when in motion.
     The nurse/technician explained all the dangers of the 88% drop off, including heart disease, organ damage, and risk of injury. I guess I have joined the oxygen for lunch bunch. At least, I don't need O2 when at rest. I maintained quite well when sitting still. 
     Also, they were concerned about my travel home in an unpressurized plane without portable oxygen. Next time you see me, I will likely be sporting my new nasal cannula. (Not a fashion accessory!) The only company available to me, Lincare, provides the portable oxygen concentrator only for the flight. Otherwise, I will work with a home concentrator and 2-hr bottles of compressed O2.
     It seems that once again my life hands me wondrously ripe fruit (a curable infection, not a worsening of my underlying lung disorder) with a nasty, little worm in it (a 50 ft. plastic worm called cannula). I can take heart from this bit of wisdom from the Lincare web site: “Patients may live for years on home oxygen.”
     It shall be my goal to improve to the point where I don’t need the supplemental oxygen. BTW, that concentrator? It sounds like an old asthmatic gasping for breath…

Mick, with a hose in his nose…

Mick McKellar Update -- Day + 1820

I made it to Gift of Life!

Once Again at Gift of Life

I made it! Rochester Methodist discharged me to stay at Gift of Life Transplant House until I can connect with a Lifeline flight to home. As usual, it took nearly an entire day to get all the permissions, files, and red tape in order. And as usual, I had to stop at the Eisenberg Pharmacy to fill four new prescriptions that cost an arm and a leg. Just like old times!

They tested me today, to verify how much supplemental oxygen I will need. Well, I had a real surprise for the respiratory technician and the doctors -- my O2 level stayed up, even while exercising in the hall (walking in circles, etc.). Because it did not dip below minimum and recovered almost immediately, I do not qualify for supplemental oxygen at this time!

Tomorrow, they will test me once again. They want to be certain (as do I) that I won't get into trouble flying around in an unpressurized plane on the way home. So, I go back tomorrow for outpatient blood tests (with ouchy copays and deductibles) and outpatient pulmonary tests. I have also had word that my physicians in Hancock have requested to see me ASAP. Lord, I am a popular fellow these days!

In any case, I am resting in my room and breathin' easy. Your prayers and good thoughts sustain and raise me up.

Good night and God bless!

Mick

Mick McKellar Update -- Day +1816

 Early AM Impressions: One would call it morning, if one had a job and a place to perform. In a hospital room, it is merely dark, with a slight shading of anticipation -- or maybe that’s fear raising its standard on the daily battlefield.

I still feel as though poised on the edge of a sword, balanced against the awful coughing on one side and the gasping for air on the other. I desperately want to get better, and return home to a new pile of arcane bills from this place for series of fantastic tests and magical medical methodologies that discover the hidden reason I feel like I’m breathing from the bottom of a pickle barrel. Yet, my focus is drawn elsewhere...I remain fascinated by performance of staff here.

The efficiency of the new breed of medical personnel and their technology is frightening. Electronic sensors in my room detect if I have risen for any reason, and they can swoop in to gather their blood samples and status data quickly, all the while looking exceedingly cool and collected. The newbies are nervous and the long-suffering veterans appear resigned to the new paradigms. All is watched. All is measured. All is evaluated.

When they are not in the room, all is silent...

Underneath

I sense that, underneath the nervous competition of the younger medical staff and nursing personnel, there remains something of the true calling I have found so evident in my conversations with, and in help from, veteran nurses and doctors in the past. Not everyone is altruistic, of course, but this is not a profession you choose because you want excessive free time, or a lot of money for your services. Oh, some doctors may do quite well, but for the most part have expenses to suck up all traces of salary and it takes time for the investment to pay off. Nurses, on the other hand, tend to be paid from the shallow end of the money pool.

As I was wheeled from the air ambulance into the local ambulance, I noted that the joviality of the fellows transporting me from Calumet to Rochester was not entirely shared by the transportation staff on the receiving end of my Hail Mary pass from Keweenaw to Mayo. The guys from Up North were garrulous and fun, yet ruthlessly professional. The guys from Gold Star were professionally pleasant, or maybe just professional.

As I was wheeled into the hospital, the images of the marching throngs once again saturated my view. Hundreds of staff, mostly young, were mostly dressed in either nursing uniforms or in the ubiquitous suits worn by doctors everywhere on campus. Mixed in with this wellspring of professionalism are the earnest faces of the lost ones. These people are patients and visitors with a purpose, but also a heavy dose of uncertainty. All look bewildered or bemused. Chief among the bewildered and bemused is yours truly, riding his magical gurney into uncertainty.

  Thanks for the prayers and good thoughts...More to come...

Mick 

Mick McKellar Update -- Day +1800

1800 Days Ago

 

1,800 days ago: Controversy continued over the Oscars problems, Mike Huckabee was deciding to run for President, Blockbuster announced it was for sale, Libya's regime launched an attack on Tripoli, there was a deadly earthquake in New Zealand, and oh yes...Mick McKellar had a blood and marrow stem cell transplant.

That last item did not make the early or late news, even in Rochester, MN—where the wonderful medical staff of the Mayo Clinic hooked me up to two small bags of chilly yellowish stuff. Those two bags of gold were truly a gift of life from my brother, Kevin. After weeks of preparation and some nasty chemicals to destroy nearly all of my immune system, the magical moment was rather pedestrian and simple. They also left me with the unmistakable odor of creamed corn—fortunately, a temporary condition caused by the preservative for the stem cells.

That night, after returning to the Gift of Life Transplant House, I sent out an email to my friends and relatives:

Well folks, the transplant took place this morning, between 9 and 10:00 AM CST. I am now back at the Gift of Life Transplant House, dealing with the side effects as they arrive. The nurses and doctors said it went very well. Very tired now. Will post more tomorrow. Thanks, everyone for the prayers and good thoughts.

Mick and Some of Kevin McKellar

It was a few days after, when things became exciting.

Still Here, Still Fighting

I posted this update because I could not let a number like 1800 pass by without noting its sheer size. 1,800 days have passed since the transplant and I was allowed to live them all, despite several rather scary and disruptive digressions from the direct path to this date. Last time I checked, all but one of my compatriots at Gift of Life—those who grabbed the brass ring at the same time—have died fighting for their lives.

Blood and marrow stem cell transplants, while a marvelous, almost miraculous medical treatment, are not guaranteed life savers or life extenders. They are a gamble, but against an alternative that has a terrible downside. I had a choice: Have the BMT or have about 8 months to live.

Well, I am here and looking forward to February 21, 2016, which will be my 5th rebirthday. Thanks for everyone's good thoughts and good prayers.

God bless,

Mick

Mick McKellar Update -- Day +1795

2 X Good News

I had blood drawn and tested, then visited my local oncologist today. Once again, the numbers are within normal ranges! Each time I visit, however, my usually benign blood pressure makes a small jump. It seems likely that I harbor some apprehension which doesn't cloud my conscious mind.

Today was 2016's first test of my capacity to function outside the warm bubble of our home. Walking about was only slightly more difficult than I remember from warmer weather, so fears of collapsing in paroxysms of wheezing, gasping, and coughing were not realized. This also was good news. So, from where did the apprehension arise?

Poignant Flashback

By nature, I am not a fatalist, but I can be overwhelmed. May 26, 2010 was such a day. Prior to that date, six years of cold baths of reality—from the sting of lost jobs, to the ache of rejection letters, to the burning irritation of patronization by those who truly believed themselves a class above—enticed me to drift a short distance from shore, tethered only by a golden cord.

On that day in May, hearing my own name and the word leukemia in the same sentence severed that flaxen cord and sent me adrift on rough seas. Voices from my past echoed across the water, insidiously reminding me that leukemia is a death sentence. My initial response was conditioned: Roll into a ball and ride the tide to a messy and painful end.

That dread reaction lasted until I flat-lined, in the ambulance, on the road to Marquette. Everyone froze for a microsecond. The shock evaporated when we simultaneously noticed that one of the electrodes on my chest had fallen off because I was sweating. The resultant laughter broke the death spell and resurrected my Celtic fire and integral stubbornness.

Thus began the fight for my life.

Waiting for Shoes to Drop

Since that time, each visit for testing and evaluation, each time they look under the hood to ascertain the need for maintenance or overhaul, is like waiting for the other shoe to drop. (Folks lived in apartments where you could hear the upstairs folks taking off their shoes. One hit the floor and they awaited the inevitable drop of the other shoe.) Well, leukemia removed my first shoe in 2010. The second has not fallen yet, and I pray it never will.

Mick

Mick McKellar Update — Day +1778

Chilled
I like to sleep in a cool room, and cuddle down under good, warm blankets. However, recently I allowed my room to warm to the level of the other bedrooms on the second floor of our home. There is no insulation between rooms upstairs, and my refrigerated room adjoins my daughter's room. It was sucking heat from her space. Consequently, I adjusted to only one blanket.

Last night, probably while doing my usual somnambulist Olympic gymnastics, I managed to kick my blanket off my bed and slept for hours under only a sheet. Because of medications I take at bedtime, I slept very soundly, and did not wake for a full eight hours. As I swam upwards toward consciousness, I realized something was wrong. My heart rate was slower than normal for waking, and I found it difficult to move. Confused, I struggled to sit up and noticed for the first time that I had no blanket. My first thought was, "Why am I not shivering?" Our house is old and cold in the winter, despite the best efforts of a new high-efficiency furnace, and I spend a lot of time shivering. I should have been shivering.

I pulled back my sheet.

My feet were bright red and my fingers were numb. I knew that meant something, but my brain refused to get into gear and start grinding facts. Although I'm certain it was less than a minute, it seemed hours before my mind's alarms went off—I was in the secondary stages of hypothermia!

Action
It must have been a ridiculous sight, like a mannequin dressing himself, but I finally dressed. I included my largest and heaviest old, fat sweater (from my over 300 lb days), and rumbled down the stairs. I stumbled into the living room, scaring Marian half to death, looking all pale and moaning like a walking toothache. I slumped into my rocker and pulled a heavy, warm throw up to my chin. Marian cranked the heat up to 74°F (wasteful, wasteful) and we waited for the shivering to start.

First came a massive wave of pins and needles in hands, feet, legs, and arms. Then slowly I began to shake and quake enough to frighten Dante. Marian called him up into my lap, but the shaking frightened him off immediately. It took the better part of an hour for my core temperature to recover enough to allow me to make some Earl Grey and take my first wave of medications.

As I write this, my hands still ache and shake, but hot tea and a bowl of Malt-O-Meal have worked their magic. I still shiver, off and on, and the normal level of pins and needles in my feet and hands has resumed. I also realize how close I came to a real emergency. Staying indoors during the winter is about my body's inability to generate enough heat to counter the cold air in my lungs, and to conquer the heat loss in my extremities—as much or more than it is to evade contact with pathogens I cannot resist.

I have become fragile—a being brittle and breakable, in an environment hostile to my health. I am well. I am alive. Just don't bump me from the shelf, for I may shatter on the carpet.

Mick