Mick McKellar Update -- Day +2734

How Do You Say No?

I have never been certain where they get our name, address, and phone number, but charities and non-profits from hospitals to sheriffs, and from anti-disease to religious organizations send mail and call us regularly. Our discretionary funds are limited and spoken-for. My mail rule is simple -- the glitzier the package, the less likely they are to get a positive response. Why give money to spend on extravagant advertising? We try to screen calls and politely decline.   Mostly, the organizations comply and mostly they call during the day -- but not all.

Once again, tonight,  I was backed into a verbal corner by an unrelenting pitch person from a charity. This group has been calling for weeks and have tried at all hours, from early morning to mid-evening. I can see their name on the phone (and on the TV, if I am watching something at the time) and I've been screening those calls. Tonight, the call came in without the usual name and we were waiting for a return call from a relative, so it was answered and passed to me because the caller asked for me by name.

She seemed like a nice person, and she said something about my being hard to reach. I laughed and said that I am sometimes hard to reach on purpose. That was the first hint that this was not going to go well.

At this point, she launched into her pre-programmed spiel about the great need for research to help those afflicted with a certain condition. I could be a great help by contributing, and could they send me a reply card for a simple donation of $100.00? A payment schedule could be arranged. And...

At this point, I cleared my throat and politely suggested we stop the script at this point, because we have already made our choices for the charities and organizations we can help support, given we are on an income which is simultaneously fixed and shrinking...

As I took a breath (I have to breathe often because of my lung problem), she jumped back in to stress how important their work is and how flexible they can be on payments...

Gently interrupting, I spoke a little more forcefully, with my best wheezy voice, and said that we would not be taking on any more contributions at this time, but will keep them in mind for the future. I was going to say good night as it was well after 9:00 PM.

Well then! Could they send me a card to agree to a very small contribution of just $20.00? After all, this terrible condition could strike anyone in my family or friends and the cost of their medical needs and research...

Less gently, I interrupted again, and said that the cost of my medical needs is also increasing and my income is going down as my insurance costs are going up -- in fact I had just received a notification from my car insurance company of yet another rate increase. So no, I would not be adding an additional expenditure to our list of charities. I took a breath...

She came back with a reminder of how prevalent the problem is and certainly, I would be willing to sign a card for a minimum payment of $10.00 -- and maybe I should tell three people close to me that I love them for they are likely to get this problem...

Believe it or not, I growled.

There was silence on the line, whilst I counted to ten and tamed the beast that prednisone always creates -- it takes months for the pudgy face and belly and the junkyard dog to go away. After my count, I quietly said I was sorry, but no, there would be no contribution. I said "Thank you for cal..." and I hung up in the middle of my own sentence.

 They never believe that you would hang up on yourself.

Mick

Mick McKellar Update -- Day +2688

Fireflies in the Darkness

I need to explain the source of my hyper-politicism and more than usually curmudgeonly language. It's called Prednisone. I am tapering off the steroid, but it's not yet gone from my system and my nerves are still buzzing and snapping -- fireflies in the darkness.

My deepest desire has always been to live as large as life. I harbor no thoughts of being larger than life, or a retiring soul, complacent in a tiny corner of my appointed box. I want to fit my life -- just the right size. Life, unfortunately continues to change the size of my box and even attempts to push it off the table. And, of course, there is always someone who wants to steal my box -- usually while I'm  busy scoping out someone else's...

This is where my old pal, Prednisone, wants to play. The steroid is  a useful, even necessary part of treatment for conditions like mine, which involve a lot of inflammation. In the hospital, bags of this stuff hang near my bed, bathing my innards with the solution. In my case, the side-effects are well known. My nerves tense and conglomerate until they are one very large nerve, and everyone gets on it. That nerve is fast and furious. Response time is zero -- too fast for me to control or even slow.

I have learned that it is not the "roid rage" that I so often hear about. My description would be roid reaction, instantaneous and not well controlled. It's the verbal outlash that you immediately regret and wish you could take back. It's the sudden, emotional reaction to something I read or hear, but it contains all the fire of a lightning strike in one uncontrollable blast. Like superelastic rubber, the harder you strike it, the harder it strikes back.

Well folks, I've been living in that box for the last couple of weeks. This morning, I took a peek over the side and saw the tracks of my big boots where I've been trampling about again. Clint Eastwood tracks were everywhere. He once said: "I tried being reasonable, I didn't like it." To those on whose toes I left Eastwood tracks: Sorry.

Perhaps Lord Byron said it best: "Man, being reasonable, must get drunk; the best of life is but intoxication." My take on that quote is that life itself is intoxicating -- get drunk on life.

Secrets and Fears

I must not forget the secret side-effect of such steroids: Fear. Death-cold, goosebump inducing, "someone just walked on your grave" grade fear often accompanies such treatments. I've experienced night terrors that I swear loosened the connecting tissues to my bones and apparitions that made my soul shudder. However, once you've faced death for real and found Faith as your armor, you breathe easier for you never feel alone.

One must understand fear: It walks through walls, be they emotional walls, rock walls, or border walls -- walls do not stop fear. Fear lives only in your mind, you cannot buy it off and you cannot legislate it away -- and yet, you can share it with those ready to accept it. Like fire, it feeds and propagates. You cannot control fear or save it or box it up for later, but you can generate it as terror.

How do I deal with fear?

Prayer is essential. Trust me, it helps. And I add in one kinda strange exercise I learned while reading a science fiction classic: Dune by Frank Herbert. In Dune, a group called the Bene Gesserit recite a Litany Against Fear. I find it's imagery poignant and exactly what I need. Two versions appear in Dune, with minor differences. This is the  Gom-Jabbar version:

Litany Against Fear

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.

Thanks for reading along. Stay safe and free of fear.

Mick

Mick McKellar Update -- Day +2684

Want to be an Ambulance

I was watching a cute video this afternoon, a dog listened to an ambulance passing his place, and then he began to howl and to imitate the ambulance sound -- not very well, but after all -- he IS a dog! The video was titled: When I Grow Up, I Want to be an Ambulance.  After staring at his fuzzy, earnest face doing his best to be an ambulance, my heart went out to the fellow and I suddenly felt a strange sort of empathy for his plight. He wants to help, and he does his best with his limited tool set.

Recently, I had several opportunities to feel the need to be an ambulance myself. First, was the night of the storm. I could tell that terrible things were happening outside, after all, it just doesn't rain like that around here very often. We were lucky that our house is up here in Florida Location, well above any flood plains and far above any ravines opening on the hills down to Lake Linden below us. The nearby wetland area absorbed most of the water falling on our hill and only about two inches of it ended up in our old basement -- just enough to shut off the water heater and ruin a few stored boards and boxes. Nothing we could not afford to lose out of laziness -- they were supposed to be on blocks or pallets.

I wanted to be an ambulance -- to run out the door with my lights flashing and my siren roaring so that I could be a first-responder and help my neighbors down the hill. But, no. Instead, I went into the hospital myself with an organizing pneumonia and after an apparent TIA (Transient Ischemic Attack) -- a mini-stroke that left me coughing and babbling the word "brain" over and over for the balance of the day. Two and a half days, I remained in Intensive Care as my system slowly inched its way toward normalcy. My SPO2 was down around 80% (dangerously low) and my CO2 level was a bit too high -- probably causing the TIA.

I'm home again and just finished a course of very strong antibiotics to kill the pneumonia. Home oxygen is once again part of my life. I am still chaffing to be an ambulance and help folks with their recovery, but my efforts all exist within the confines of my oxygen tube and nasal cannula. If I want to roam a bit, I have to suit up with my fancy oxygen tank and sporty short cannula, and take my tank for a walk. Some ambulance, eh?

Maybe I should just howl a bit. I'm certain Dante would join me, and we can be ambulances together...

Mick

Mick McKellar Update -- Day +2650

Bronze Age Redux

     It was Wednesday, May 26, 2010 at about 9:00 AM, when I received a call at my workstation. I was working on a project for the Keweenaw National Historical Park under one of those federal programs that train seniors for jobs that don’t really exist. A few hours earlier, I’d stopped by Aspirus Keweenaw Hospital for a serious blood test, to determine if I had type II diabetes. The symptoms were all there...had been since January...and the fatigue was overwhelming.
     I was worried. When blood began to appear in my eyes and distorted my vision, it seemed prudent to get a diagnosis and deal with it. So, it was with trepidation I accepted the call.
     The nurse practitioner told me to get my butt over to the hospital immediately. They had an ambulance waiting for me...I had leukemia. Thus began my now eight-year journey.
     Tomorrow is the Bronze Anniversary of my diagnosis and marks eight years surviving Philadelphia chromosome positive, chronic myeloid leukemia. I have entered my Bronze Age.

Betwixt and Between

     As I enter my bronze age, I leave my stoned age behind. I am taking no regular pain killers now, and fewer drugs that leave me dizzy or wobbly. I begin the long wait for my iron age, when once again I will have the strength to lift and wield a cast iron frying pan. However, despite the Sumerians, Gilgamesh, and the Amorite Code of Hammurabi, I find it most ironic to have my bronze age in the Copper Country.
    All really bad jokes aside, I am pleased to note in passing that tomorrow I will be an eight-year cancer survivor. I shall celebrate with a cup of Earl Grey and a toasted English muffin with homemade blueberry jam.
    The above commentary came about as I was pondering the Code of Hammurabi, known for its harsh punishments, wherein literally an-eye-for-an-eye edicts appear, that are literally carved in stone -- a four-ton stele of diorite. However, the code incorporates, for one of the very first times, the idea that a person is innocent until proven guilty. It’s a precept often abandoned by our own court of social media.

One Final Thought

    Although the age will be bronze, alas, I will remain pale as fresh milk. Like the vampires of old, I cannot long tolerate the touch of old Sol and must remain in the shadows, or bring my own shadows with me.
    I am thankful for all who sent thoughts and prayers. Your thoughts reassured me and your prayers convinced God to let me go on complaining and kvetching. Thank you.

Mick

Mick McKellar Update -- Day +2640

Tangle Trap

   I had a dream last night. Marian and I had gone to Marquette for my appointment at the hospital with a pulmonologist. He would be reading my pulmonary function studies as the tests are done to track the progression of my bronchiolitis obliterans, i.e., GvHD of the lungs.
    As we were leaving the waiting room, we had a chat with a young couple from Houghton. She was pregnant and having some difficulty breathing, but it wasn't serious. What was serious, was the condition of their car, apparently the victim of a runaway end-loader that nearly totaled their Cooper Mini. They badly needed a ride to Houghton, so we offered a lift home. Marian would wait with them, and I would toddle off to get our car and bring it around.
    My steps were not particularly buoyant, because my visit with Dr. Saari had not gone as planned. There were indications that my left lung was failing and recommendations were sent to my primary doctor that I should have a full panel of X-rays and maybe a CT Scan. I was focused on this news as I rode the elevator to the ground floor of the hospital. I stepped off the elevator, directly into a construction area -- what appeared to be a warehouse or steel-framed space, filled with end-loaders, welders, workmen in hard hats and overalls, and girders being lifted by what appeared to be a steam crane. My ears must have popped, because the sound was muffled and distant, as though I had cotton stuffed in my ears.
    I saw men in double-breasted suits and fedoras talking by a wooden stairway to a suspended office space, and headed in that direction. I turned around to place the elevator door in my memory, but it was gone, replaced by a large hole, partially filled with a huge form being filled with concrete...a footing?
    When I looked back, the men in fedoras were gone, but I could see shadows of people moving in the office. So, I toddled over and slowly climbed the stairs. I knocked on the door with a frosted glass window. When no one answered, I opened the door and walked in. Men in fedoras were standing around a desk, occupied by a young man in a plain wool suit, typing on an old Olivetti upright typewriter.
    I closed the door and turned around again...and was standing in a 19th century bedroom or hotel room, complete with pitcher and basin on a stand, floral wallpaper (which looked different every time I noticed it) and a four-poster bed with nightstand and oil lamp. Fog or mist blanked windows framed in heavy brocade curtains. Flickering light was provided by wall sconces -- gaslights by the look of them.
    Already occupying the room were two women and a baby. The women wore period traveling clothes and seemed in a rush to pack and leave. One portmanteau was open and a few items were on the bed. The baby was in a dresser drawer filled with towels and never moved that I could see. One woman was older -- perhaps 50 years old or so, with mostly gray hair. The other woman was ancient -- shriveled and stooped, white hair billowing about her wizened face. They ran back and forth to the baby and to the bed, talking a stream of nonsense in what I surmised was some form of German. At least it sound like German. I could not be certain, because the sound of their voices seemed to be coming from a great distance. Point in fact, they seemed a tad transparent and took no notice of me.
    I spoke to them and received not even a flicker of recognition. I tried to touch the younger woman, but my fingers slid off as though a shield interfered. I could not interact with them, so I decided to leave.
    When I turned around and reached for the door, I was surprised to be staring at a large dresser, a highboy with many drawers. A quick search showed a door in the opposite corner of the room, so I quickly walked over, grabbed the knob and pulled.
    On the other side of the door was another door which opened the other way. I opened that door and found a third door. The tenth door was locked. It seemed to be made of black oak and had a huge brass door lock. No amount of pounding, kicking, and shouldering had any effect whatsoever. It was immovable.
    I needed to reassess my situation, so I closed the ninth door and reached for the eighth. In doing so, I nearly stepped off the stairway to the office, almost falling to the floor ten feet below. I was out of the room!
    Looking about me, I discovered the construction site gone and I stood in a garage, facing the doors to the elevator. In the polished reflection of the elevator doors, I could just make out my reflection. Indistinct and wavy, I haunted the surface. But, my eyes were clearly reflected and my irises were black as midnight and gave me the shivers. I started screaming.
    Police were called, and I was transported home, refusing to go back into the hospital. Six months had passed since I toddled off to get the car. A whole lot of searching had been done and no trace was found until I appeared in front of the elevator doors. My story was met with blank stares and smothered sniggers. I felt wretched and misunderstood.
Anger burned me from the inside and I shrieked...
    I woke up from my dream, shaken and cold. Upon standing next to my bed, I looked into the bedroom mirror and my eyes looked weird. My soft brown eyes were hard black. I quickly looked away and back again. My old eyes stared back at me.
    Sometimes, dreams can feel too real.

Mick

Mick McKellar Update -- Day +2600

Memories...For Sale?

    I remember this sign that used to stand by the Houghton city limits as we drove into the area for the first time. It was the early 1960’s and we would not have believed that by 1967, we would move to this Copper Country.
    1967-68 was not a happy school year for me. I was a senior in high school, transplanted from a Westland, MI super school to Dollar Bay, the smallest accredited school in the State of Michigan. Culture shock was the word of the day. Still, I wonder if my memories of that time are accurate.
    I had a dream last night. It was the same dream I’ve dreamed several times in the last week or so. In my dream, I’m a new medical doctor, a GP starting my practice in a small town very much like any in the Keweenaw. Working in a small town hospital, I was treating a wide variety of injuries, illnesses, and problems. I was also becoming involved in a great number of lives in my community, and with my coworkers.
    In the story, a coworker is involved in a bar fight. He starts the fight because he is drunk and because he is a malcontent with stacks of chips on both shoulders. He gets injured when he is pushed out the front door of the bar by a young man whose wife he is propositioning. Both men arrive at the hospital because my coworker slipped on ice and tangled with a guard rail and the pavement in the parking lot. The young man was tripped accidentally by a drunken fellow in the tavern and hit his head on the foot rail around the bar. This is how the evening ends.
    The next day, all is changed. All the patrons at the tavern say the young man's wife came on to my coworker and her husband blindsided him as he tried to leave. The young man hit his head when my coworker took him down with a single punch...what a man!
    The story goes and and I discover that SMS (Subjective Memory Services) is a private memory conversion company for the hyper-rich, and can alter perceptions and memories of events to the advantage of their clients...like my coworker.
    In the dream, I am one of the folks whose medical conditions short circuit their devices and I begin to see and recognize situations where facts on one day become different on another day, and people don't notice and don't care. We fight on, trying to find a way to fight the hyper-rich's control of the media, and their technology to affect memory.

For Real?

    I wish I could say I have dreamed up solutions to these fantastic threats. My fears are most probably driven by recent attempts to subvert media outlets by those with the money to buy them outright and to financially coerce journalists. Fears often show up as monsters in dreams. Are the monsters real? I will never be part of the 0.1% who control most of the wealth of the world, so I will never be party to their power plays and will likely never look into the eyes of the monster.
    Oh, by the way, today is the 2,600th day since my transplant -- and I'm still alive and kicking. I have also discontinued the last of my pain medications, the acetaminophen, and I'm dealing with the pain in other ways -- or just living with it. Sometimes the pain and electric tingling serves to remind me that I am alive.
    Thanks to all who think about us and pray for us. It keeps me going to know you are there. And thanks for reading about my dreams.

God bless,

Mick

Mick McKellar Update -- Day +2557

Seventh Milestone

Seven years ago today, right about the time I'm typing these words, lifesaving stem cells from my brother Kevin were introduced to my weary and worried person. Months of chemotherapy leading to several days of conditioning, left my bone marrow barren and my immune system in shambles. Two small bags of stem cells were hooked up to my port and I waited while they slowly dripped into my heart for distribution throughout my system.

No fanfare. No photos. It didn't take very long. I went back to our room at the transplant house and waited.

Did I mention that I smelled like creamed corn for two days? That was interesting.

I've treasured the fact that my miracle was such a low-key event. After all the hazmat gear of the chemotherapy sessions, the machinery of the testing and scanning, and the endless hours of solutions dripping into (and out of) me, the simplicity of the transplant was almost pleasant. It was, of course, an irrevocable step taken in desperation. My blood would no longer be MY blood -- it would be my brother's blood -- and that blood would take on a life all its own.

In various ways, the blood in my body would reject me and attack me in confused fury. It attacked my skin, my liver, my kidneys, my eyes, my mouth and GI tract, my teeth, and my lungs. At the same time, my new blood was generally unwilling to respond to foreign invaders, requring multiple hospitalizations and re-vaccination for childhood diseases. I required cataract surgery, removal of my gall bladder, and treatment for skin cancer. I still take 12 medications.

However, seven years later, I am still here -- alive and writing this depressing narrative! My new normal is unlike anything I could have predicted. That CML would change the course of my life never occurred to me as I was busy making retirement plans. I've learned that, although I need to plan for a future, I need to be flexible enough to absorb a sucker punch and resilient enough to come right back and make necessary course corrections. I also learned to live each day as though it might be my last. I try not to waste time on worry.

Guess what? I am happier now than I can remember, because I know I can take a punch. Like my old Timex watch, I can "take a licking and keep on ticking."

Thanks to everyone who helped us and sent so many (recently maligned) thoughts and prayers. It all helped.

Mick

Mick McKellar Update -- Day +2538

Call Me Sunny ⛅, Sonny!

       Let me tell you about this morning's dream. Today was the latest I have risen since my days in hospital, where I was in bed most of every day. My dream was difficult to flee this time. I truly wanted to stay asleep and enjoy the sensations of peace and warmth.
       You see, I was a star 🌟, like our Sun, but in human form. Although it felt as though I had a nuclear fire 🔥 at my core, it didn't burn me to cause pain, but infused every cell of my being with warmth and light. Overwhelmed with joy, I would explode into a massive ball of brilliant fire, but not destroy anything, just become a momentary burst of sunlight. Gold and silver streams of joy would burst forth, and whenever someone was touched by them, they paused and smiled...just a little.
       As I walked about in the snow, I felt the snow melt away and luxurious green grass and feathery moss appeared to cushion my feet. My feet were perfect, unscarred, and felt everything because I wore no shoes. Having known only pressure and pain for all but 18 months of my life, the experience was overwhelming.

Exploration and Investigation

       Although it was snowing like gangbusters, the flakes evaporated as they touched me. I could feel their feathery, chilly caress, a gentle summer breeze on a warm afternoon. The sounds were exhilarating. The hushed whisper of the snow, the rattling of the pine boughs in the wind, and the enveloping fairy cries of life all about tickled my ears. The rushing, hissing, whining, and roaring of tinnitus was gone, as was the patient thrum of my beating heart, and the distinct grinding of bones as I moved about. I almost heard silence for the first time.
       Hunger and thirst were behind me, and yet I still breathed. I sensed that I no longer needed to take a breath, but found some comfort in being able to do so without the pain and distress, so much a part of my daily life. I felt no pain at all, though I could touch things. I soon learned not to touch people, as they apparently could not see me, and it caused them distress. For a time, I simply watched them go about their self-important tasks and selfless expressions of love, as they worked, worried, wished, worshipped, and wondered.
       Few of the folk I haunted were happy. Although most had everything necessary for comfort, sustenance, companionship, and safety, few were satisfied and even fewer were happy. There were moments when individuals and couples would suddenly shine brightly and these ephemeral sunrises were common enough, but they seldom lasted more than a moment as the burning lights within were once again hooded and shut away -- even from each other.

Shadows

       There were shadows moving among other living folk.
       These individuals and groups of individuals seemed to drain light away from others around them. There were no shadow couples, as even within groups, they shared little and what light touched them was deflected or absorbed. They carried their own personal winter with them.
       Still others seemed broken, their light flashing and surging, and then suddenly dimming -- even plunging into shadow. I came to think of them as distress beacons flashing in the night. Often, shining folk would congregate about such a beacon and seek to share and stabilize. Sometimes, no one helped and the beacon spun off flashing desperately in the distance. 

Fireflies Everywhere.

       Small flashing points of light drifted about, usually in the orbit of an individual or group of folk. It didn't take long to sense these were pets and other animals. They seemed to have a symbiotic relationship with folk, their tiny sparks adding to the glow of their compatriots.
       Larger glowing orbs appeared and disappeared constantly with and among the folk around me. It took a moment to realize they were just like me. Gazing and watching, flaring and shining, occasionally touching living folk. Often, they concentrated on the shadows, but just as often had little or no effect on the path of the shadows or the darkness around them. Sometimes, occasionally in the immediate vicinity of a shadow, sudden flashes and explosions of light would erupt. Instantly, I knew it was others discovering their light.

Coming Home

       As I began to flit and flicker about, visiting and watching and learning, a warm light enveloped me, revealing two paths. One lead to light, warmth, and a pain-free existence. The other drew me with an irresistible force, back to daily trials and a chance to share what I saw. Here I am, so you can guess my choice.
       For a few minutes after waking, the joy and the warmth stayed with me, as I slowly cooled back into plain Ol’ Mick. However, for awhile I was energized, happy, and at peace. Was I once again dancing near death? I wonder why I might have chosen to come back to this cold and cruel world. I also understand why some folks simply die while sleeping.
       Dreams are strange, wonderful, and dangerous things.

Mick