I already knew something was wrong…
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“It’s Just CLL”
I already knew something was wrong…
I’d known it for months.
Because, in the course of doing my “routine” Lynch Syndrome surveillance over the past year or so, my oncologist snuck in a few extra blood tests and showed a particular interest in palpating and measuring the lymph nodes in my neck, underarms, and groin. They also started asking a few extra questions regarding my energy levels and whether I had any problems with my teeth. Hmmm?!
Long story short, the alarming levels and trends in my blood work (white count and other cancer markers) could no longer be denied and it was announced in February 2018 that I had Leukemia–Chronic Lymphocytic Leukemia (CLL), B-Cell Type.
And guess what?
I was relieved.
Crazy, right?
Allow me to explain.
I was relieved to learn that it was only CLL, not an aggressive Lymphoma and not a primary Lynch Syndrome cancer that had already advanced. Two diagnoses, among others, that I was already bracing myself to hear.
Relieved.
No kidding.
What a relief to hear that it’s “only” leukemia! (I am not being facetious here in the least).
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Thinking Back
Once you receive a Leukemia diagnosis, you start remembering things…
… that didn’t seem normal, but that you brushed off as no big deal at the time.
The very human defense mechanism of denial perhaps?
And so, I thought back on the progressive loss of energy that creeped in over the years… something I attributed to just getting older.
And so, I flashed back to that shower in 2015. Rubbery, painless, grape-sized lump in the left side of my neck. Just a lymph node doing its job, right? I just moved on with the rest of my day and put it out of mind.
I suspect now that these were the early signs that my body was fighting a war against the millions, billions, trillions of abnormal cells multiplying and spreading in my bone marrow, blood stream, lymphatic system, and who knows where.
Does knowing any of this matter now? Would knowing I had CLL and being able to do something about it back then have made me healthier today? Perhaps it would have made things worse. For one, I would have carried around three extra years of anxiety. For two, I might have been hit with a harsher and less effective treatment than is available today (more on this in subsequent posts).
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That Covid Summer
When I was diagnosed with CLL (February 2018), my labs were “good enough” and symptoms “mild enough” that no treatment was warranted…
… at the time.
You’ll take any good news you can get, right?
Who knows? Maybe I’d be one of the lucky few who goes two decades never needing treatment.
Alas, no such luck.
Fast forward two years to the summer of 2020, smack dab in the worst part of the Covid pandemic: massive shutdowns, people freaking out, conflicting medical advice, no vaccines, no treatments, conspiracy theories running amok, tons of misinformation, and divisive politicization.
I had done “okay” for a couple of years—fatigued, but pain free, and still pretty functional (all the while dancing with Lynch Syndrome)—until it began: a raft of horrible symptoms one after another: some that crept up on me, others that seemed to attack overnight and without warning.
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Symptoms
Summer 2020. A raft of alarming symptoms that came on over the course of weeks, days, hours, minutes, and sometimes heartbeats…
Symptom #1. Horrible night sweats. Severe enough to wake me several times each night. So severe that I had to change my bed sheets and pajamas. Sometimes so severe that I needed to find somewhere else dry to sleep.
Symptom #2. Multiple blind spots in both eyes.
Symptom #3. Persistent and progressively worse acid reflux, sometimes so severe that it prevented me from sleeping.
Symptom #4. Complete loss of appetite.
Symptom #5. Unpleasant taste in my mouth. Like dirty metal. No matter what I ate. Things that should have me drooling lost all appeal, so much so (and also because of the severe acid reflux) I hardly ate at all.
Symptom #6. General Malaise. Full body discomfort. Feeling sick all over. And getting progressively worse.
Symptom #7. Sudden loss of sex drive and reduction in pleasure.
Symptom #8. Grossly enlarged lymph nodes in my groin–so enormous (tennis ball size) that I literally could not bend down to put socks or shoes on. Accompanied by enlarged lymph nodes in my armpits and neck.
Symptom #9. While out for what should have been a brisk evening walk, my legs suddenly seized up and just stopped moving. Doubled over in severe pain. Lower left back, pelvic area, and leg. F&ck. Am I having stroke? Unable to move until I rested for a few minutes. After several tentative starts and stops to recover, I made it home only to discover my left leg to be shockingly swollen. And feeling as hard and stiff as wood. One neuron firing away from driving myself to the emergency room. And I might have if it weren’t for the vision of an ER already overflowing and overburdened with Covid patients. I just laid down, raised my leg, and massaged it instead. It helped enough for me to get some sleep, but I knew this could not be ignored.
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Misdiagnosis
What is any rational person to do as each of these horrible symptoms rears its ugly head?
You begin by hoping each one just goes away. Alas, none of my symptoms went away. In fact, each one got slowly but surely and progressively worse.
And so it began…
Days and weeks of presenting myself to multiple doctors—general practice, dermatology, ophthalmology, urology, gastroenterology, and oncology.
Urinary tract infection ruled out.
Inguinal hernia ruled out.
Testicle cancer ruled out.
Along the way, my Lynch/Muir-Torre Syndrome was still making skin lesions. A particularly worrisome lesion excised from my left lower eyelid.
And don’t forget: All this is happening during that first anxiety ridden Covid summer.
Diagnosis: GERD–acid reflux. Confirmed by multiple doctors.
It made perfect sense, given that I also had a hiatal hernia, diagnosed fifteen years earlier.
Yay! An answer! It fit the data! And an easy fix, right? Avoid spicy foods. Drink more water. Raise the pillow. Raise the head of your bed. Over the counter antacids. Prescription Proton Pump Inhibitors (PPIs). Guess what? Nothing helped. Nothing. Some days were better than others, which gave me false hope, but every symptom eventually grew worse and worse.
Along the way, I googled each symptom hoping for answers. Nothing useful. Mostly click bait and bad advice. Nothing that even hinted at the root cause.
Along the way, a horrible chronic “grunt” developed. I suspect now that I was aspirating stomach acid into my sinuses and lungs. Not a good thing, especially while a serious unknown respiratory virus was attacking the whole planet.
Even a colonoscopy and upper endoscopy (done annually as part of my Lynch Syndrome surveillance) showed that, except for some minor irritation to my esophagus, my GI tract looked “normal”. Diagnosis of GERD confirmed.
More precious days and weeks go by in ever growing pain and anxiety.
I cannot live like this. What am supposed to do?
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Mystery Solved
To make another long painful story short, the acid reflux diagnosis was only half right…
I did indeed have stomach acid refluxing into my esophagus and aspirating into my sinus cavities and lungs. But the root cause was not my lifestyle, not my eating habits, and not my hiatal hernia. The root cause was finally identified after I presented to my oncologist with those grossly enlarged lymph nodes, unresolved back/pelvic pain, and an alarmingly swollen left leg.
Fast forward through a battery of tests and the culprit became clear: Chronic Lymphocytic Leukemia (CLL). My CLL, which hadn’t required treatment for more than two and a half years, suddenly went berserk.
Not the news you want to hear, but at least it explained why my acid reflux did not resolve using the standard set of treatments. Simply put, my stomach and intestines were displaced and compressed so severely by my enlarged abdominal lymph nodes–like contorting and squeezing a garden hose–that my digestive was blocked and could not function normally.
At once horrified and relieved.
And given a sliver of hope that something could be done about it.
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Treatment Plan
And so, my Chronic Lymphocytic Leukemia decides to go crazy…
Not very “chronic” of it, huh?
But knowledge is power, right? Because now you know who the enemy is.
And don’t forget, Frankie. You have decent health insurance. And you’re already under the care of a doctor you like and trust–someone who knows your unique case history and someone who understands hematology and cancer genetics.
I met with my oncologist on October 9, 2020–fully expecting to hear that my survival would require months of hard chemo—with all the time, pain, nausea, vomiting, constipation, diarrhea, weight loss, fatigue, hair loss, and raft of other side effects that entails–and with no guarantee of success.
I was fully expecting to have to make a hard decision: How much am I willing to suffer for an uncertain future? What algorithm shall I use to trade quality of life for quantity of life?
Imagine the pleasant surprise to learn that our first line of therapy was a pill: Acalabrutinib (Calquence)
And then imagine learning that this pill was just recently (November 19, 2019) approved by the United States Food and Drug Administration (FDA) for the treatment of CLL.
No kidding. Talk about good timing in a bad situation.
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“It’s Just a Pill”
“Just a pill.” Sounds so simple, easy, and convenient…
Well, yes and no.
First, there’s “chemotherapy training”–reading a twelve-page summary about the drug’s application and long list of possible and likely side effects.
Second, signing a consent form to document that you understand the treatment and its risks and granting your permission to start.
Third, submitting the prescription to a specialty pharmacy and waiting for the insurance company to approve (not a given).
Fourth, thinking of all those questions you forgot to ask at the doctor’s office: What time(s) of day do I take it? With or without food? Is taking at the same time as my other medications ok? What do I do if I start puking my guts out? How bad do side effects have to be to rush to the ER or urgent care? (Being a crybaby is a very real fear)
Fifth, getting a ton of tests to establish a baseline in order to measure the effectiveness of the treatment and monitor side effects.
Sixth, advised that it will likely take months to know how effective the treatment is going to be and how well I will tolerate it.
Fingers crossed.
But be prepared: The likely side effects (yes, the kind you just thought of) typically show up after just a few days.
In the meantime, that nasty list of symptoms that ruined my Covid summer continued to destroy what little quality of life I had left.
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First Dose of Calquence
I took my very first dose of Acalabrutinib (Calquence) on October 14, 2020…
In that same timeframe I started taking Alapurinol in order to prevent Tumor Lysis Syndrome and Prednisone as an anti-inflammatory and energy booster.
Tumor Lysis Syndrome (TLS) can occur when large amounts of tumor cells are killed (lysed) by the cancer treatment, released into the bloodstream and most commonly occurs during treatment for lymphomas and leukemias. TLS is a potentially fatal complication and requires close monitoring by way of regular blood work.
And immediately got busy with all the tests required to stage my disease, establish a baseline, and monitor for possible side effects. Not to mention all the surveillance I was already doing for Lynch Syndrome. And not to mention a bunch of tests that were already in process trying to pinpoint how exactly my CLL was causing that long list of horrible symptoms.
Here, for your perusal, is a partial list of tests and procedures endured in the days and weeks that followed:
- Urinary Tract Ultrasound.
- Blood flow ultrasound to check for arterial blockage.
- Blood Work (which continued twice a week, measuring things I didn’t think you could measure). Twice a week. No kidding.
- EKG. (possible arrythmias induced by Acalabrutinib).
- Eyes to Thighs CT scan.
- Bone Scan.
- Pelvic Bone Marrow Biopsy.
Each of the above coming with its own set of challenges, pains, frustrations, anxieties, and costs.
By the way, while all this is happening, that nasty list of symptoms that ruined my Covid summer was still destroying my quality of life… and getting worse.
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Blindsided
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 late September 2020 in order to stage my CLL, baseline my CLL treatment, check for possible Lynch cancers, and pinpoint how my CLL was causing that long list of horrible symptoms.
Fast forward three days… Unwilling to ruminate two weeks until I saw my oncologist to discuss the results, I was compelled 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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Bone Lesion Biopsy
“Right proximal humeral diaphyseal spiculated sclerotic focus 1.2 cm with intense FDG avidity.”
That can’t be good.
And it wasn’t.
Fast forward more stressful days and weeks. Litany of horrible Covid summer symptoms still unresolved. And now getting hit with some nasty side effects from “just a pill”.
Biopsy of the lesion in my right proximal humerus. Ouch.
More anxiety-ridden days pass.
Diagnosis: Metastatic Prostate Cancer.
F&ck.
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Join the Club
Rewind to that very first dose of Acalabrutinib (Calquence) in mid-October 2020…
I felt “okay” for the first four days.
In fact, I managed to squeeze in a full body scan on day three without incident (specifically having the almost guaranteed side effects of Acalabrutinib–puking my guts out or having explosive diarrhea–while laying inside that huge whirring sterile claustrophobia-inducing donut of a machine).
Day five. No such luck.
The nausea came out of nowhere. You know that horrible feeling when you start to sweat, know you’re going to hurl, and have maybe twenty seconds to find a toilet. And hurl I did. Four hard heaves in a row. Feeling like my ribs were going to crack.
Then the headache hit. Vicious.
Then came the fatigue. Overwhelming fatigue. Not just sleepy. Not just tired. Exhausted. I just wanted to lay down and never get up again.
And realized that I just joined the club of those who understand.
But you want to hear something crazy? I didn’t feel as upset as you might expect. I was too exhausted to feel much of anything.
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Bad Timing
There’s absolutely no way I want to live like this. I need to call my oncologist’s office to see what we can do…
And so, I did–with what felt like the last few drops of energy I had to spare.
No answer. (legitimate reason why explained below)
I called again.
No answer. (legitimate reason why explained below)
I left a desperate voicemail.
Didn’t hear back for three days. (legitimate reason why explained below)
I’ll spare you the hour-by-hour commentary, but I spent those three days in hell: nausea, vomiting, headache, and debilitating exhaustion. I barely drank any liquids and didn’t eat a thing.
Was THIS really the price I would have to pay to stay alive?
Could it really be that THIS is how the system works?
And try to imagine what other dark and cynical thoughts might cross someone’s mind at a time like this.
Anyway, another long painful story short, my timing for starting Calquence couldn’t have been worse. After my oncologist got back to me three days later, I learned that the entire staff was hit hard by Covid and the office was effectively shut down. Simply put, there was nobody there to help me, through no fault of their own.
Heartened to know they really did care, I wrote off my three days in hell as just one more anonymous Covid casualty.
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Pain Level 10
In short order, thanks to the compassion and expertise of my oncology team…
… as well as the marvels of modern pharmacology—many of my symptoms were quickly alleviated… with pain killers, anti-inflammatories, anti-nausea meds, and appetite stimulants.
In just a matter of days, the palpable lymph nodes in my groin, armpits, and neck decreased measurably. And I recovered enough energy to nominally function kind of sort of.
The problem, though, is that all those other horrible symptoms—the reflux, taste distortion, loss of appetite, general malaise, and swollen leg—persisted. Some getting worse. As did the back, pelvic, and leg pain.
Off the charts pain like I’ve never experienced. Unable to walk or sleep. So intense that even the opioids could no longer do the job.
I thought I knew what pain level 10 was before. I was wrong.
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Hydronephrosis
There are no words big enough to describe the pain…
No matter. I need help. NOW!!! (If I wasn’t scared to death of Covid at the time, I would have rushed to the emergency department already overwhelmed with Covid cases.)
Instead, I squeezed myself into my oncologist’s schedule.
In the meantime, my recent Eyes to Thighs PET Scan report came in.
Diagnosis: Hydronephrosis. Caused by several lymph nodes in my abdomen that became so enormous that they were compressing my left ureter (the tube that connects each kidney to your bladder). So much that my kidney was swollen and quickly dying because it could not drain normally.
THAT is why I had that horrible taste in my mouth.
THAT is why the horrible reflux persisted.
THAT is why my left leg remained so morbidly swollen.
THAT is why I was in constant, horrific, untreatable pain.
Finally an answer.
Things moved quickly from there.
We hit the pain harder with opioids, jumped on the inflammation with steroids, and pushed to have a stent installed in my left ureter to allow my left kidney to drain properly.
A low-risk Interventional Radiology (IR) procedure. Done for kidney stones all the time. Twilight sedation. Fully expecting to go home the same day.
No big deal, right?
Wrong.
Next thing I remember is being shocked awake, not from a nightmare, but into a nightmare. Screaming through my clenched teeth as I realize I’m hospitalized. Blood and urine squirting everywhere. Where’s the damn emergency button? My roommate, who I’d yet to meet, sees my distress and presses his. The angels known as nurses were there in a matter of seconds.
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Bilateral Nephrostomy
Surprise! Left ureter was so compressed by my swollen lymph nodes that they couldn’t install the stent…
And another surprise: Same problem on the right side, too.
Only one solution: Bilateral Nephrostomy, hoping to prevent further kidney damage.
Two tubes penetrating my back and kidneys so that urine can drain into rubber bags strapped to my legs.
Hospitalized. Catheterized. Breakthrough pain now a mere level 8 or 9. Regular doses of Morphine keep me comfortable. Released three days later.
Deep gratitude to my surgeon for their knowledge and skill and to my nurses for their know-how, compassion, and dedication. Angels and superheroes every one.
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Nephrostomy Life
Imagine trying to function with two tubes penetrating your lower back, draining urine from your kidneys into bags strapped to each leg…
24/7.
For seven months.
Imagine trying to keep everything clean.
Imagine trying to sleep.
Imagine trying to take a shower.
Imagine trying to put your clothes on.
24/7.
For seven months.
Imagine being shocked awake because one of the urine bags is leaking into your bed.
Imagine the nasty urine stink that permeates each bag after just a few days… and then realizing that the hospital didn’t even tell you this would happen and sent you home with no replacements.
Requiring a home care nurse visit to care for the inflamed Nephrostomy wounds because you can’t see them or reach them yourself. (The photographs shall remain classified Top Secret)
Along the way, more pain.
An E-coli infection.
Tubes replaced more than once, once with insufficient anesthesia. (You don’t want to know)
Stents finally installed.
Excruciating capping trials.
And all the while, the rest of my cancer story hasn’t taken a holiday.
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Quite the Turnaround
Fast forward through the painful, anxiety-ridden process of Chronic Lymphocytic Leukemia (CLL) diagnosis and treatment to a place that allows me to share some sincere words of encouragement…
I’ve lost track of how many times I almost gave up, but so glad I didn’t succumb to despair.
And I am glad I trusted my doctors.
Although it took some time, the Acalabrutinib (Calquence) started working.
After a week or so, the headaches stopped of their own accord.
Weeks later, I no longer needed the anti-nausea meds.
I eventually weaned myself off the opioids (at least temporarily).
It took months, but those deeply buried lymph nodes shrunk significantly.
It took months, but my leg returned to normal size.
It took seven months, but I eventually had those effing Neph tubes removed.
And here I am today—four years later and counting—my CLL being treated quite successfully.
Some loss of kidney function, some loss of strength and energy, but able to be more than just a cancer patient—able to live with joy and purpose–and with a quality of life that made it all worth fighting for.
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Frank’s Cancer Story continues… My Prostate Cancer
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