January 24, 2024
This is the last of 4 brief episodes re-telling my 2022 leukemia journey.
If Acute Myeloid Leukemia had planned to kill me, it was unexpected, unpleasant, unproductive and ultimately unsuccessful.
Thankfully.
I learned some things.
Often I ask God: If I need to learn a lesson, couldn’t I just watch a YouTube video about it and take notes? Is there some special reason why I need to actually experience it? Am I, like, really slow to understand lessons?
God has remained strangely silent during these rants.
In my own simple and uncreative way, I documented the lessons learned in my book Alligator Wrestling in the Cancer Ward, chapter 12. In extremis, these are rules to live by:
Optimism is infectious, genuine or not.
Encouragement incentivizes success.
Prayer is not our last resort but our first.
The more you treat it like a sitcom, the easier it is.
Don’t suffer in silence, and also don’t suffer in public.
Never let a crisis go to waste.
A hard trail is not the same as a closed trail.
We do not always get to choose the trials we face; only how we face them.
I will not amplify these words of my hard-won wisdom here. Get the book.
These lessons are not about cancer. Each has wide application to Problems That Have No Solutions.
The point is to remain on top of the circumstances of life, rather than being crushed underneath.
It takes no special skill to be crushed by misfortune, especially when it’s not your fault. The trick is to accept the reality and master it.
The bigger the challenge, the more difficult the mastery.
And the sweeter the victory.
How My Tough-Guy Attitude Helped Me Survive Cancer, Episode 4
Walking out of the hospital surprised about everyone
After the detour through the Intensive Care Unit, I tried to resume a more normal existence as an unremarkable patient in the cancer unit.
There were other challenges, many having to do with lower intestinal difficulties.
I will spare you the details, other than to say that medical professionals who specialize in the Number 2 arena are among the best people in this world.
I was slowly climbing out the other side of that chasm of despair and fear that had blocked my path. I had seen the worst it could offer… and it was truly frightening. I will not minimize it.
Now the fight turned toward the mundane: diet, exercise, physical therapy. These were critical daily practices. Ignoring them would leave me a large blob of unproductive weakness.
I would be a drag anchor on the care-givers, especially my wife, who had weathered so much fear of her own. She deserved better.
Dragging myself from the 50-way adjustable bed, every morning I pushed myself to wash my face, brush my teeth and get dressed. (No need to shave; it had not started to come back yet.)
With the help of a mobility aide I began cruising the hallways. Excess fluids from the gallons of IV treatments had collected in my legs, making them swell visibly. Irritably, I consented to wear the elastic hospital-provided socks with the non-skid rubber nubby dots on the bottoms.
The occasion when I finally got back to jeans and cowboy boots was a banner day.
Weeks in a bed wreaks havoc on muscle tone. After I could walk, I discovered the quadriceps would not let me climb stairs. The first time I faced a flight of 10 steps, held securely by the aide, I thought, “How do people do this???”
A steady, daily venture into the hallways began to restore the fitness. It was a long trip.
I was on chemo treatments a week each month over the next two months.
***
The highlight of this season was the highly entertaining Battle of the Insurance Coverage.
Once I was dismissed from the hospital, I would need to continue chemo treatments outpatient.
Going home would be good.
Paying for the chemo would be bad.
The short version of the pharmaceutical arithmetic is that I was facing nearly $50,000 in out-of-pocket expenses over the next 4 months. This would commence as soon as I left the hospital.
That sort of robbed the joy of having survived the spleen and the kidney affairs.
As long as I remained in-patient, the chemo was free.
To me.
Not to the hospital.
Because of my cancer insurance policy, over and above Medicare, my hospital stay paid me at a monthly rate exceeding a 6-figure annual income. Tax-free. Not a bad gig, as long as you don’t die.
The longer I stayed in, the more money I would collect.
The hospital case worker was obligated to see me dismissed at the earliest possible moment. I was costing them a small fortune in unreimbursed Medicare treatments.
Fortunately for me, the case worker was also obligated to help me obtain grants and refunds to reduce the cost of out-patient drugs. She and I discussed it daily.
There were requests for financial assistance that she could issue. Most were rejected, due to some over-zealous bean-counter doing careful means-testing on my asset base.
I politely asked her to file an appeal for each rejection. She did, and received a second denial. I politely asked her to have the denial reviewed. She did, and received a third denial.
While this may seem a pointless exercise in financial volleyball, every day we kept the ball in the air paid me another stipend.
There were multiple grants; and then multiple appeals directly to the pharmaceutical manufacturers. Eventually she wore them down. I strongly suspect a senior doctor got involved, and perhaps senior hospital management, to plead down the price of my care.
I couldn’t afford to go home, and the hospital couldn’t afford to let me stay.
The out-of-pocket chemo cost was finally beaten down to a manageable level.
By the time I left, I was wearing street clothes and the much-longed-for cowboy boots, roaming the corridors endlessly, coffee mug in hand.
Stepping outside for fresh air. Engaging the front desk volunteer staff in pleasantries.
I was dismissed on Day 83. Thus ended the gravy train.
My immune system, however, remained significantly compromised. I was still in chemo, after all, and the point of this brand of chemo was to repetitively kill off the protective white blood cells to make way for new cells, hopefully stronger than the mutants.
At home, I spent three months secluded in my basement office — The Bunker — working on a book.
For some time I had contemplated writing up the experience. Perhaps I saw myself as Bilbo, returned from the adventure of a lifetime, ready to compose There and Back Again.
The more I thought about a book, the more I came to a realization: This journey was unique and valuable.
Who else did I know who had the capacity to organize the lessons and the fluency with language to communicate them? Not to mention a wife with extensive notes and dates from doctor consultations and procedures.
I sat before a Windows computer and began to type.
***
The fear is now a distant memory, but one I shall never forget.
Those who face this frightening prospect, and who stand beside loved ones who face it, are confronted with a dark and forbidding canyon slashed ugly and unexpected across their path.
Down there lies fear. The path into that abyss is unmarked and untraveled. The only certainty is that monsters lurk in the depth.
There is no path but forward.
There is no weapon but courage.
There is no sweetness but victorious advance.
May God add abundant, gracious blessing to those who are thus called.
And that is the overview of Alligator Wrestling in the Cancer Ward: How a Christian Tough-Guy Survived Leukemia with Gallows Humor, One-Liners and a Praying Posse. If you are drawn to the story, it is available, in print, eBook and audio, wherever books are sold.
If you have found the story moving and valuable, contribute to its distribution by making copies available to cancer patients and caregivers. Make your tax-deductible contribution to Via Christi Foundation, which oversees distribution to hospitals, clinics and other medical providers. The link is www.alligatorpublishing.com/via-christi.
And yes, I do gain a bit monetarily from your gift. Thank you.
How My Tough-Guy Attitude Helped Me Survive Cancer 4/4