Mick McKellar Update — Day +2300

Small Milestones Matter

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

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

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

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

The More You Complain, the Longer God Lets You Live

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

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

Milestones, Beautiful Milestones

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

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

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

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

Mick

Mick McKellar Update — Day +2223

Waiting for Falling Shoes

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

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

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

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

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

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

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

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

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

And then, reality continues to change my life.

Good evening and God bless,

Mick

Mick McKellar Update -- Day +2190

Another Milestone

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

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

Anniversaries are Important

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

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

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

The Gift

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

Goodnight and God bless,

Mick

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