One of the great joys of doing any medical test is discovering something you weren’t even looking for or worried about…
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Surprise!
One of the great joys of doing any medical test is discovering something you weren’t even looking for or worried about…
In my case, one of those tests was an “Eyes to Thighs PET Scan” performed in the fall of 2020 in order to stage my CLL, baseline the CLL treatment that I just started, look for possible Lynch cancers, and diagnose exactly what was causing that long list of symptoms that continued to destroy my quality of life (see “My Chronic Lymphocytic Leukemia”)
Fast forward three days. Unwilling to ruminate two weeks until I saw my oncologist to discuss the results, I had to log in and peek at the test report.
Browsing the host of horrifying images where my skeleton and organs lit up like a Christmas tree and sifting through three pages of medical jargon, there it was: “Right proximal humeral diaphyseal spiculated sclerotic focus 1.2 cm with intense FDG avidity.”
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Biopsy Indicated
“Right proximal humeral diaphyseal spiculated sclerotic focus 1.2 cm with intense FDG avidity.”
… in layman’s terms, a tumor inside my upper right arm bone that screamed cancer.
And if that wasn’t enough, a dozen other “hot spots” showed up in my abdomen, pelvis, spine, and ribs.
Awesome sauce.
But this was still not enough information for a diagnosis. The only way to know what kind of cancer was to do a biopsy.
More awesome sauce.
An important message for anyone scheduled for such a biopsy: Don’t freak out. The procedure isn’t nearly as painful as it sounds and what pain there is lasts no more than a single heartbeat.
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The Verdict
More anxiety-ridden days and weeks pass. Bracing myself. Fully expecting really bad news…
Meanwhile… The fatigue, malaise, reflux, swollen nodes, swollen leg, taste distortion, lost appetite, and lost libido unresolved.
Meanwhile… uncomfortable and embarrassing hot flashes.
Meanwhile… soaking night sweats that ruin my sleep.
Meanwhile… the nasty side effects from “just a pill” used to treat my CLL.
Meanwhile… my skin still making Sebaceous lesions that need excised.
Meanwhile… the threat of so many Lynch cancers hanging over my head.
Meanwhile… cancer nightmares that interrupt even the temporary escape of sleep.
Meanwhile… adding amputation of my right arm (my good arm) to my list of things to worry about.
Fast forward to another visit with my oncologist to discuss the pathology report from my arm bone lesion biopsy.
As if my cancer story wasn’t already interesting enough, the diagnosis was unequivocal: Metastatic prostate cancer. Gleason Score = 10.
The worst a man can get.
F&ck.
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Androgen Deprivation Therapy
The first line of defense for advanced prostate cancer is to stop feeding it…
And what does prostate cancer like to eat?
Testosterone.
And so, you begin something dispassionately called Androgen Deprivation Therapy (ADT), which consists of two prongs…
Prong #1. Medicines (*) that stifle the ability of your testicle to produce testosterone (chemical castration).
Prong #2. Medicines (*) that stifle the ability of prostate cancer cells to uptake testosterone.
(*) In my case, a combination of Lupron, Enzalutamide (Xtandi), and Casodex.
But let’s skip the euphemisms and just call it what it is: Chemical Castration.
Say goodbye to your virility.
Say goodbye to your sex drive.
Say goodbye to sexual pleasure.
Say goodbye to your ability to get an erection.
Say goodbye to orgasms.
Say goodbye to your physical strength.
Say goodbye to a big chunk of your energy.
Say goodbye to all the above.
Forever.
And say hello to fatigue, hot flashes, night sweats, muscle loss, weakness, weight gain, man boobs, and osteoporosis.
At least I learned I wasn’t going to lose my arm, something I use to play piano–one of the few things that gave me a reason to keep on living.
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Disappointment
Long, stressful story short, the Androgen Deprivation Therapy (ADT) didn’t work…
My PSA kept rising–at an alarming rate (doubling every few weeks).
And a PET Scan showed my tumors growing and multiplying.
I have what they call castration-resistant prostate cancer (CRPC).
Not a surprise, really. Not with a Gleason Score of 10.
And so, it was time for the second line of defense: chemotherapy–the kind people think of when they hear the word “chemotherapy”.
By the way, chemotherapy does not replace ADT. It adds to it.
And so, you get to keep all those awesome side effects that come with the complete loss of testosterone and brace yourself for what’s to come.
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Chemotherapy Preparation
In my case, the chemotherapy of choice was something called Taxotere, to be given by infusion every two weeks…
But first, you must sign a consent form to document that you understand the treatment and its risks and to grant your permission to begin.
Second, you need to establish a baseline of images, blood work, and other measures in order to assess the effectiveness of the treatment and to monitor you for serious side effects.
Third, you must have a “chemo port”–also called a PORTACATH–installed in your chest. This device consists of a subcutaneous silicone septum (capable of lasting for years and of accepting thousands of needle sticks) which is connected by a flexible catheter inserted into your superior vena cava. Such a port facilitates frequent and long-term intravenous infusions while preventing damage to the peripheral veins (as if doing a typical blood draw).
Message from Frank to all patients about to have this procedure: It sounds a lot scarier than it really is. The port is installed on an outpatient basis with twilight sedation, local anesthesia, real-time radiography. Two small wounds and no sutures required. The only discomfort is the quick prick that comes with getting your IV started. After that, the entire procedure is absolutely painless–just a few seconds of pressure when the doctor instructs you to squeeze. And once your incisions heal up in a week or so, you’ll hardly know it’s there. Promise.
By the way, Frank’s port has been working perfectly and without any discomfort or complications whatsoever for years now.
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Welcome to the Chemo Suite
It’s quite surreal, first time in the chemotherapy suite…
For years up to that point, I’d only poked my head in to say hello to the medical staff I already knew—never wanting to invade the privacy of the other patients—never daring to cross the threshold into that sacred space—never feeling worthy enough to set foot on such hallowed ground. For real.
Yet here I was—worthy now, I hoped—ready or not for my first infusion.
I’ll spare you my multimedia description of the chemo suite. Suffice it to say that it’s pretty much exactly as you imagine it.
But there are many things I do feel compelled to share… because it wasn’t until I took my seat in one of those enormous “easy” chairs that I realized there were so many things to learn–some trivial, some not…
For one, you need to learn about the infusion itself…
- The interview questions you’ll be asked before each infusion and why they matter.
- What the poke will feel like. (By the way, no big deal).
- How long it would take (longer than expected)
- The saline flush before and after… and the weird taste that comes with it.
- The heparin push to prevent blood clots in the port and catheter.
- Falling asleep for the first part because an antihistamine (Benadryl) infusion is standard practice in order to prevent an allergic reaction to the chemo.
- The need to ice your hands and feet to minimize peripheral neuropathy (Don’t ignore this part).
- How the Neulasta OnPro Injector is installed and operated… and what it feels like.
For two, there’s the routine housekeeping stuff…
- Where’s the toilet?
- Where are the drinks and snacks?
- Is it okay to help yourself?
- Are you free to get up and wheel yourself around?
For three, all the stuff you need to know and do when you get back home…
- The extra tests you’re now responsible for scheduling and preparing for.
- When the Neulasta OnPro Injector will fire and how to dispose of it properly after it’s done pumping the next day.
- What symptoms to be on the lookout for. And what to do and who to call if there’s a problem. (I learned that there’s such a person as a triage nurse).
- When you might expect the onset of the nasty side effects that are pretty much guaranteed to occur.
And finally, the ongoing human interaction stuff…
- Getting to know the pharmacists, medical assistants, and nurses. And them getting to know you.
- Meeting the other patients (or not) and learning how to respect their privacy and other boundaries.
- What you are free to do on your own and what requires assistance or permission.
- Knowing when to ask for help.
- Learning to ask for help.
- Learning that it’s ok—and appreciated—when you’re a good helper, too.
- Knowing when it’s time to be serious, but also when it’s time to have some fun. For real. With both the staff and other patients.
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Neulasta Onpro
One of the deadly serious side effects of chemotherapy (in my case Taxotere) is that it kills white blood cells…
… cells that are absolutely essential for fighting infections.
And so, it’s standard practice, while doing chemo, to treat you with a medicine that stimulates white blood cell production.
In my case, the practice was to “install” a Neulasta Onpro device every time I had my chemo infusion. An electro-mechanical gizmo that easily fits in the palm of a half-closed hand, it includes a small reservoir filled with medicine, some microelectronics for controlling the sequence of events, a very narrow short catheter, and some adhesive tape for attachment to your skin.
After being filled with the liquid medicine, the device is attached to your belly (other locations are possible) using the adhesive tape. Two minutes later, a soft click is accompanied by a very mild stinging sensation–no worse than the flick of a finger. That’s just the mini-catheter poking your skin. Then a green LED lights up and the clock starts. In my case, programmed to pump the medicine into my system about twenty-seven hours later, which is timed for maximum benefit counteracting the loss of white blood cells. Once the gizmo finishes pumping, the green LED turns red and you are free to peel it off. Keep it as a souvenir or dump it in the medical waste bin next time you visit the doctor.
Message from Frank to all patients about to use this device: The worst part is waiting two minutes for the first click. And that feels no worse than the flick of a finger. After that you’ll go about your day and barely notice it’s attached to you. Promise.
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The Chemotherapy Process
Can you say your full name and date of birth?
And what are you here for today, Mister Peter?
Taxotere Infusion. Advanced prostate cancer.
By the way, it didn’t take long before everyone started calling me Frankie. Not Mister Peter. Not Frank. Frankie. What only my family and friends call me. Imagine that.
Sanitize the skin around the chest port. Poke. Pull with a syringe to ensure the line is open. Saline Flush. Benadryl Infusion to prevent allergic reaction to chemo drug. Fall asleep. Wake up. Put on ice-filled gloves and booties to minimize neuropathy. Taxotore Infusion. Heparin Push to prevent blood clots. Saline Flush. Neulasta OnPro Installed.
Three or four hours you’d rather spend elsewhere but for one reason: The chemo nurses rock.
R-O-C-K ROCK!
You’re in good hands, Frankie.
Driving home imagining the epic microbiological warfare about to be waged inside me.
Fingers crossed.
But bracing for the expected side effects.
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Losing My Hair
In simple terms, chemotherapy drugs (in my case, Taxotere) work by killing anything that grows quickly…
The good news is that this includes cancer cells.
The bad news is that this includes healthy cells, too—notably white blood cells and the cells that line your gastrointestinal tract—as well as the most visible healthy cells of all: your hair.
It took a few weeks, but the hair on my head slowly but surely started coming out—mostly in clumps in the shower. At first, hardly noticeable to the casual observer, but eventually looking awful enough that it all had to come out.
I shaved my head the Sunday after Thanksgiving 2021.
[insert a pic?]
As a man this was no big deal. In fact, I was curious to see what I’d look like bald. (I can’t imagine what it’s like to be a woman in the same circumstance)
So I decided to make a celebration of it—to do it with a smile, to see my baldness as a badge of honor, to rock it with confidence and pride next time I saw another human being.
But most of all, I embraced it as a sign that the chemo was doing exactly what it was supposed to do.
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Chemo Side Effects
Now I really look like a cancer patient…
But losing your hair is not just about appearances. The worst part of the hair loss was, for me, losing the hair in my nose—those unappreciated whiskers that keep out the pollen, dust, and microbes.
And so your nose and sinus cavities stay dry and raw 24/7. And sometimes bleed.
Oh well. You shrug it off as just another “small” price you must pay.
But there are so many other “small” prices you must pay—the pain, fatigue, nausea, lost appetite, malaise, energy loss, weakness, neuropathy—not to mention the opportunity costs of so much life unlived while you are fighting and feel like hell.
And so, I’m compelled to ask: What equation shall I use to trade quality of life for quantity of life?
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Chemotherapy Continues
Somehow you keep on keeping on as the discomfort, monotony, and anxiety of each two-week chemotherapy cycle comes and goes…
Cycle #1. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
Cycle #2. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
Cycle #3. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
Cycle #4. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
Cycle #5. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
Cycle #6. Monday Blood Draw. Tuesday Taxotere Infusion, Onpro install, review Test Results. Wednesday Wait for Onpro to fire.
While all the above is happening, my Lynch Syndrome refused to magically disappear (My Lynch Syndrome).
While all the above is happening, my Chronic Lymphocytic Leukemia story continued to be written. (My Chronic Lymphocytic Leukemia)
While all the above is happening, my skin continued making Sebaceous lesions that needed to be biopsied and excised. (my Skin Cancers)
Along the way, you do your best to live as if you’re not just a cancer patient.
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Devastation
For the first few weeks, the chemo appeared to be working…
… until it didn’t.
PSA rising again—alarmingly so.
The word devastated is so inadequate.
How do I describe the feeling? It wasn’t anger. It wasn’t sadness. It was the total loss of hope. A black void so enormous that no amount of despair can fill it. The realization that my life was over, but worse. Not just the end of my existence, but the death of my every hope and dream. For good. Replaced with the dread of months of unimaginable sufferings to come. And the absurdity and pointlessness of it all before my heart mercifully stopped beating.
And so Taxotere infusion #7 never happened.
That was January 11, 2022.
It is what it is, I thought.
And asked: What trials does a human being have to endure to prove themselves worthy of being alive?
But no matter. Because I was absolutely convinced this was the beginning of the end. I notified my family of the news and double-checked that I had my affairs in order.
I didn’t just think my options were exhausted. I knew they were.
I really had no idea at the time that there was a third line of defense.
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A Glimmer of Hope
That third line of defense was a medicine you’ve likely heard of if you watch even a wee bit of television…
Keytruda (Pembrolizumab)
Immunotherapy.
Long story short… based on some highly technical reasons particular to my case, I “made the list” of cancers Keytruda was approved for by the FDA and that my health insurance company was willing required to pay for.
Another reprieve on the gallows.
And no time to waste.
I had my first Keytruda infusion on January 18, 2022—exactly one week after thinking all hope was lost.
Side bar to the cynics out there: I receive no compensation for mentioning Keytruda. Merck doesn’t even know I exist.
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First Reprieve
And so you board another crazy train to who knows where…
Again, be a good patient when you have to and live like you’re not a patient when you can.
Lots of tests to monitor progress and side effects (some life-threatening).
More days and weeks pass.
Fast forward to review first set of lab results—heart pounding as usual.
I was incredulous.
PSA level plummeting.
And no obvious side effects. Knock on wood.
But don’t spike the football yet, Frankie.
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Great News, Bad News
Every three weeks: Blood draw Monday, Review blood work and Keytruda Infusion Tuesday.
Repeat every three weeks…
Cycle #1. Cycle #2. Cycle #3…
PSA level continues to plummet. Yay!
Major organ functions normal. Yay!
Cancer antigen levels dropping. Yay!
Blood counts normalizing. Yay!
No “Oh shit” side effects. Yay!
Blood in my urine. Boo!
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Blood in My Urine
Blood in my urine. Don’t freak out yet…
Not an unusual side effect of some of the medicines I’m taking.
Perhaps a delayed complication from the bilateral nephrostomy that tortured me for seven months.
But still worrisome.
Just imagine looking in the toilet every time you pee only to see streams of blood swirling around. Intermittent at first. Then more frequent and persistent. Imagine the dread you feel every time you need to go.
And so your imagination runs wild: Kidney cancer? Ureter cancer? Bladder cancer? Fully aware that all these are common Lynch Syndrome cancers. And fully aware that ureter cancer had already taken one of my mother’s kidneys.
More tests.
More anxiety-filled days.
Infection ruled out.
Cancer ruled in.
F&ck.
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Bleeding from Where?
Not a question of cancer or not, but of what kind, where, and how bad…
Exploratory surgery indicated.
The possibilities considered: Bladder Cancer, Kidney Cancer, Ureter Cancer.
Knowing full well that my mother lost a kidney due to Ureter Cancer.
More anxiety-ridden days, hours, and heartbeats follow.
Again, make sure you have your affairs in order, Frankie.
Again, the stress of who to tell, when to tell, how to tell, what to tell, if to tell.
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Catheterized
Imagine waking up and being informed that they found a five-inch-long tumor in your bladder…
… and that they “did their best” to excise what they could using a cystoscope.
Imagine being sent home with a thick tube shoved through your penis into your bladder, so that urine can drain into a rubber bag strapped to your leg.
Imagine feeling like there’s a tiny razor blade slicing the inside of your penis every time you move, even just a little.
Imagine dreading having to pee because it burns–and feeling like you have to pee all the time.
Imagine trying to do anything at all–sitting, standing, walking, eating, sleeping, driving, going to a bunch of other physically and emotionally painful medical appointments–with this torture device inserted into and strapped onto you.
Imagine still not knowing if it’s bladder, kidney, or ureter cancer.
For ten days.
In fact, try to imagine it just for ten seconds.
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Second Reprieve
It’s standard practice to wait two full weeks to see the surgeon, review the pathology report, and discuss a path forward…
Two more weeks of anxiety, most of it preventable (if only the medical professionals could feel what it’s like to be a patient).
Fast forward to the follow up with the surgeon, fully expecting to be told that I had end-stage bladder, kidney, or ureter cancer and there was nothing more they can do.
At best, I expected to lose a kidney (like my mother) and keep on fighting to live.
Imagine my surprise to learn it wasn’t bladder, kidney, or ureter cancer at all, but high-grade invasive prostate cancer in my bladder—the size of a medium-sized pickle. By the way, five centimeters, not five inches long, as I was told immediately post-op. Just imagine the shock of relief and anger.
At least it wasn’t a new cancer. Yay!
And then I was floored again: No further action required. Just stay the course with my oncologist: Keep doing my Lynch surveillance, taking Calquence for my CLL, doing my ADT for my prostate cancer, and getting Keytruda infusions for all the above as well as for the metastatic GI cancer lesion in my liver.
I walked into the exam room expecting—not merely preparing for—but expecting to be told I was done for and I left feeling better than I had in weeks.
Another reprieve on the gallows.
My cancer journey wasn’t over, but at least it wasn’t OVER.
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Fast Forward
Fast forward fourteen months (March 2023)…
Along the way, continuing to be a good patient.
Along the way, enduring a few other health-related bumps in the road.
Along the way, dealing with the occasional mindlessness and heartlessness of the healthcare system bureaucracy.
But also along the way, some enormously encouraging events:
(1) The blood in my urine eventually disappeared.
(2) A case of Epididymitis (a painful, but common post-operative complication from the bladder surgery) eventually resolved on its own–a strong sign that my immune system may be stronger than I thought.
(3) I noticed that I was producing fewer skin lesions (due to Testosterone Deprivation Therapy? Calquence? Keytruda?)
(4) My blood counts “normalized” indicating that my Chronic Lymphocytic Leukemia (CLL) went into hematological remission, treated successfully with Acalabrutinib (Calquence).
(5) My Androgen Deprivation Therapy (ADT) and Keytruda infusions rendered my PSA levels below the threshold of detection.
(6) The lesions in my liver shrunk significantly (likely thanks to Keytruda).
(7) Every one of those grossly enlarged lymph nodes in my groin, neck, and armpits became unpalpable.
(8) I recovered my appetite, weight, strength, and some of the energy I thought was lost forever.
(9) My cancer antigens (a measure of what kinds and how much cancer you have) became undetectable.
(10) Nowhere along the way have I experienced any of the many possible “Oh shit” side effects I was worried about.
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Frank’s Cancer Story continues… Cancer Traumas
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