Cancer doesn’t just rob you of your future. Cancer kills by robbing you of the present, too…
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Precious Time Lost Forever
Cancer doesn’t just rob you of your future. Cancer kills by robbing you of the present, too…
Here, for your perusal is a partial list of the ways that cancer has and continues to rob one cancer patient of the most precious thing he has–and the most precious thing we all have: TIME.
Note: If you get exhausted merely browsing the list below, just imagine how it feels to actually live this list-–with all the physical and emotional pain. And don’t forget having to pay all these medical bills and wrestling with the often mindless and heartless bureaucracy of it all.
Alas, such is just one of the many prices one must pay in order to stay alive.
Daily Time Sinks (organizing & taking your meds, hot flashes, night sweats): 2,200 x 0.3 hours = 660 hours
Colonoscopies/Upper Endoscopies: 19 x 10 hours= 190 hours (annually, ongoing)
Cystoscopies: 11 x 2 hours = 22 hours (semi-annually, ongoing)
Left Inguinal Hernia Surgery: 1 x 10 = 10 hours
Genetic Counseling: 1 x 4 hours = 4 hours
Hemicolectomy Surgery: 5 x 24 hours = 120 hours
Ophthalmology (retinal bleeding, eyelid lesion): 6 x 2 hours = 12 hours
Right Inguinal Hernia Surgery: 1 x 10 = 10 hours
Umbilical Hernia Surgery: 1 x 10 = 10 hours
Skin Lesion Biopsies & Suture Removal: 150 x 3 hours = 450 hours
Skin Lesion Excisions (not Mohs): 30 x 3 hours = 90 hours
Urologist Visits: 12 x 2 hours = 24 hours
Dermatology Exams: 52 x 2 hours = 104 hours (every few months, ongoing)
Psychological Counseling: 4 x 2 hours = 8 hours
Sebaceous Adenoma Excisions: 50 x 4 hours = 200 hours
Sebaceous Carcinoma Excisions: 12 x 4 hours = 48 hours
Mohs Surgery & Reconstruction (nose): 2 x 14 hours = 28 hours
Prostate Biopsy: 1 x 2 hours = 2 hours
EKGs (potential arrythmias induced by Acalabrutinib): 13 x 2 hours = 26 hours (every 3 months, ongoing)
Chemotherapy Training: 1 x 3 hours = 3 hours
Bilateral Nephrostomy Surgery/Hospitalization: 3 x 24 hours = 72 hours
Emergency Interventional Radiology Procedures (Nephrostomy complications): 5 x 4 hours = 20 hours
Urine Cytology: 21 x 2 hours = 42 hours (every 3 months, ongoing)
Exploratory Cystoscopic Surgery: 1 x 6 hours = 6 hours
Pneumonia Vaccine, 2 x 1 hour = 2 hours
Pelvic Bone Marrow Biopsy: 1 x 3 hours = 3 hours
Arm Bone Marrow Biopsy: 1 x 3 hours = 3 hours
Covid Testing (required for each hospital-based procedure during the pandemic): 8 x 2 hours = 16 hours
Home Nurse Visits (care for Nephrostomy wounds): 10 x 1 hours = 10 hours
Zometa Infusions: 24 x 2 hours = 48 hours (every 3 months, ongoing)
Pharmacy SNAFUs = 20 hours
Evusheld Injection: 1 x 1 hour = 1 hour
Lupron (Chemical Castration) Injections: 24 x 1 hour = 24 hours (used to be once a month, now every 3 months, ongoing)
Foley Catheter Removal: 1 x 1 hour = 1 hour
Flu Vaccine: 15 x 1 hour = 15 hours (annual)
Liver Biopsy: 1 x 4 hours = 4 hours.
Oncologist Visits: 85 x 2 hours = 170 hours (frequent, ongoing)
Urine Cultures (to check for UTIs): 6×2 ours=12 hours
Taxotere Chemotherapy Infusions & Neulasta Onpro Installations: 6 x 5 hours = 30 hours
Radiation Treatments: 12 x 3 hours = 36 hours (but actually an entire month lost to debilitating exhaustion)
Imaging (Esophograms, Ultrasounds, X-rays, CT Scans, MRIs, PET Scans, Bone Scans): 46 x 3 hours = 138 hours (ongoing)
Blood Draws: 240 x 1 hour = 240 hours (ongoing)
Port-a-Cath Installation: 1 x 6 hours = 6 hours
Keytruda Infusions: 71 x 2 hours = 142 hours (every 3 weeks, ongoing)
Not to mention the consultations, procedure preps, follow ups, driving to and from, check in and waiting longer than planned, arranging for transportation, waiting for transportation, surgery recovery, healing, waiting for results, suture removal, telephone bingo, telephone tag, wrestling with the insurance company, letting your imagination run wild, wondering who, when, what, and if to inform what is happening, managing referrals, educating your new doctors, finding a new doctor because your old doctor is out of network, and getting your affairs in order… to name but a few. (Hundreds of hour and counting)
So many precious heartbeats, minutes, hours, days, weeks, months, and years lost forever.
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Retirement Plans
Well before I retired on my 50th birthday, I already knew that life was short…
It’s not like I needed a cancer diagnosis to teach me that lesson.
As so I chose the freedom, power, and gift of TIME over whatever freedom, power, and luxuries that more money might afford me should I continue paid employment (by the way, still unaware of the cancer curve ball that was already on its way).
At that time, I fully expected to live a relatively healthy three decades or more—plenty of time to pursue my many dreams of having some fun and doing some good. I imagined having thousands of carefree days to enjoy and billions of unrushed heartbeats to share all the knowledge, wisdom, and wealth I was so fortunate to accumulate in my first half century.
That all changed with my Colon Cancer and Lynch Syndrome diagnoses in 2012.
Suddenly, my future went blank. All the hope and happiness of so much to look forward to stripped away from me. All my long-term projects became short-term projects. All my “big” plans became “little” plans (at least I thought so at the time). And so, Frank the great hope for the world was reduced to Frank the cancer patient–condemned to living surviving one day at a time-–and sometimes just one heartbeat at a time.
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Living Death
Cancer doesn’t instantly and painlessly take you away…
… some number of years, months, weeks, days, hours, and minutes from now–something referred to so dispassionately as “life expectancy”.
Because between now and then, it’s going to be rough–no matter what path you take.
The disease itself will take its toll.
The treatments will take their toll.
Even every victory–no matter how small–will cost you something.
And even then, there are no guarantees of success.
And along the way you are always asking yourself: What exactly am I fighting for?
And so, “life expectancy” is measured not just by the number of days you have left, but by the quality and meaning of the days you have left.
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Rules of the Game
Imagine a vicious game where you don’t know the score and never know how much time is left on the clock…
Except for the laws of the universe and the biochemical warfare being waged inside you, there are no rules.
It’s a game where fairness means nothing. You can do everything right and still lose.
The players include you, a network of medical providers, and a small circle of family and friends.
Sometimes the ball’s in your court. It’s a time when you must choose—given a list of knowns, another list of known unknowns, and some unknown number of unknown unknowns–any of which can startle and stagger you at any moment.
It’s a game where it’s often a heroic accomplishment just to survive another day—sometimes to survive just another minute.
And then you realize that the game cannot be won. Everybody knows how it ends. All you can do is decide to play (or not)—for a time.
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Quantity & Quality
Even with perfect knowledge of the future, you still may not know if you’re choosing wisely…
And even with perfect knowledge of the past, you may not know if you’ve chosen wisely.
Sometimes you choose your path.
Sometimes the path chooses you.
But no matter where you are on your journey, no matter how successful your treatments might be, you are always faced with the question: Is it worth the physical and emotional price you must pay?
How much QUANTITY and QUALITY of my life today am I willing to sacrifice for some unknown amount of QUANTITY and QUALITY of life tomorrow?
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Wasting Time
Tick-tock, tick-tock, tick-tock, tick-tock. That vicious clock never stops ticking…
Every precious passing second heartbeat forever lost to eternity.
And so, I have zero tolerance for wasting time.
And so, every day comes with a deep sense of urgency.
And so, I have no time for small talk. No time for fussiness, trivia, vulgarity, pettiness, and anger.
And so, I’ve quietly distanced myself from quite a few “friends” along the way—not in anger, not in judgement—but in the savage defense of every precious ounce of time and energy I have left.
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Measures of Time
Time can be measured in a variety of ways: By the clock, calendar, and passage of the seasons…
Also by the big milestones in life: first steps, first words, baptisms, birthdays, graduations, first job, getting your driver’s license, first kiss, first love, leaving home, first vote, first beer, starting a career, getting married, having children, retirement, having grandkids, and many other accomplishments and rites of passage.
Alas, cancer introduces you to many other ways to measure time: lengthy bouts with nausea, weakness, exhaustion, pain, and anxiety… surviving and recovering from a surgery… starting and stopping chemotherapy or radiation treatments… putting yet another biopsy, colonoscopy, endoscopy, cystoscopy, PET scan, procedure, infection, and complication behind you… losing your hair and getting it back again… to name but a few.
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The Burden of Now
Wouldn’t it be nice if living IN the moment was a simple matter of living FOR the moment?
Alas, life is not that easy.
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Who am I?
I’m constantly revising my estimate of how much meaningful time I may or may not have left…
It’s equally true that my estimate of how much meaningful time I may or may not have left is revising ME.
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Ups & Downs
The quantity and quality of time I think and feel I may or may not have left really matters…
How else am I supposed to decide what to do today?
I know what it feels like to think I’m going to live forever.
I also know what it feels like to know it’s the end.
But here I am. Still. My personal doomsday clock always ticking.
Every waking moment, I’m estimating. Always estimating.
Years? I doubt it.
Months? Probably.
So, what shall I do with the weeks, days, hours, minutes, and heartbeats I have left?
Some number. Wrenched this way or that by every encouraging or discouraging word, by every positive or negative test result.
Always expanding or contracting… forever at the mercy of my strength, appetite, energy, and mood of the day.
An estimate that shrinks and expands as pains come and go… and shrinks and shrinks more as pains come and stay.
An estimate that can be obliterated by an alarming symptom, unexpected complication, or sudden crisis that can blindside you at any moment.
… all the while ticking down with each passing day, hour, minute, and heartbeat.
One moment you’re filled with hope… the next breath crushed with despair.
How is anyone supposed to live like this?
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Acceptance
I know what it feels like to think and know that it’s TIME FOR ME TO GO…
I’ve lost track of how many times things got so bad–that I was so exhausted, emaciated, impotent, defenseless, helpless, alone, and in so much pain that I WISH my life expectancy was zero…
… just so I could put all the pain, grief, anxiety, stress, difficult decisions, and pressure to be a hero behind me.
Forever.
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Living with Dignity
Barring a huge medical breakthrough or something else getting me first…
… I expect that one or more of my cancers will render my life unlivable in the not too distant future.
I don’t know what course my disease, treatments, and life circumstances will take between now and then, but I do know this: When that time comes, I expect to take full advantage of Medical Aid in Dying.
In the meantime, I’m going to do my level best to LIVE with dignity–by making each and every precious day and heartbeat something to be proud of.
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Wrong Every Time
At the risk of sounding like a toxically optimistic cheerleader…
… every one of my worst-case life expectancy meaningful time remaining estimates (which have gone effectively to zero on many occasions) have been absolutely wrong.
But the crazy thing is this: Even every one of my best-case life expectancy meaningful time remaining estimates have been absolutely wrong.
I’m still here and doing more than merely surviving–able to live each infinitely precious day with passion and purpose.
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Frank’s Cancer Story continued… Death with Dignity
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