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