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