March to My SeaToday 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 BattlefieldsAs 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...
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