An unvarnished, deeply human glimpse into the underworld of living with advanced cancer…
Special Note: This page remains a work in progress… Frank hopes to post more as time and energy allow.
Table of Contents
Preface
My name is Frank, an advanced cancer patient who (as of this publishing date TBD, 2026) is continuing to live with cancer, somewhat successfully… and has a thousand hard-earned lessons learned, thoughts, and feelings to share in the hope of being of service to others.
What you are about to read is not a daily journal. Neither is it a place to find specific medical or legal advice. It’s a window into the underworld of being an advanced cancer patient–shared in the hope of helping patients, caregivers, and loved ones to avoid so much unnecessary suffering. I hope that medical professionals might also lurk here and expand their view of what truly humane health care might become someday.
But be prepared. For this is not going to be some feel-good pep talk with a happy ending. It’s a story of physical pain and emotional distress… of countless needle sticks, biopsies, and invasive procedures… surgeries, hormone therapies, chemotherapies, and radiation treatments… tests, tests, and more tests… waiting, waiting, and more waiting… false negatives and false positives… harsh medications and unwelcome side effects… unexpected complications and unpredicted crises.
It’s a saga of never-ending stress and anxiety… of difficult decisions and difficult conversations… frustrations, disappointments, and loneliness… mindless and heartless bureaucracy… insensitive things that people say and do… traumas and recoveries… grief, disability, and reinvention… precious time and energy lost forever.
And, unless there’s a huge medical breakthrough on the horizon or something else gets me first, cancer is likely to make my life unlivable in the not-too-distant future.
But in the midst of all these challenges are stories of real-life angels, hope, and love… and sometimes even moments of pure and indescribable joy.
I don’t know how my journey will unfold from here, but I invite you to walk with me for a while–with the prayer that we can find the courage to stand tall, find some peace, and at the very least help each other to feel less alone in the face of natural evil.
Aside: If the universe grants Frank enough time and energy, he plans to add many more chapters with an emphasis on lessons learned and to turn all these posts into a PDF and kindle book for posterity.
back to… Table of Contents
Health Status Report (Updated April 8, 2026)
For lack of a better phrase, I am somewhat of a walking miracle (not a miracle, of course, but quite explicable—a topic for another day).
If you saw me in the street, I’d like to think you’d guess me to be a perfectly healthy sixty-five year old man living a charmed life. You’d never guess I had so many advanced cancer journeys happening all at once… with lesions scattered in my lymph nodes, bone marrow, prostate, bladder, liver, oil glands, pelvis, spine, ribs, right humerus, left femur, and who knows were.
As of this writing, my known lesions are calcified or stable, my CLL is in hematological remission, my Prostate Cancer is in radiological remission, and I my body has not created any new Lynch Syndrome lesions since 2020. All thanks to a tortuous and torturous path of diagnosis, imaging, surgeries, androgen deprivation therapy, radiation treatments, IR interventions, chemo therapy, and immunotherapy.
The road has been pretty rough along the way, but modern medicine enable me to live a meaningful, rewarding life. No wasted heartbeats.
If I had to honestly characterize my objective and subjective physical and emotional state of health, I would say that at this very moment, I am not dying from cancer. I am living with cancer.
Hey, Frank. What Kind of Cancer Do You Have?
To begin with, I have something called Lynch Syndrome–a hereditary cancer syndrome that predisposes me to a long list of genitourinary and gastrointestinal system cancers.
In fact, I was diagnosed with one of these Lynch cancers (Colon Cancer) in 2011 before I ever heard the term “Lynch Syndrome”. Detected early. Hemicolectomy performed. Stage one. No spread to lymph nodes. No chemo or radiation required. Such great news at the time, thinking that this would be the victorious end of my cancer story and give me bragging rights for the next fifty years.
No such luck. Six months later. A “routine” dermatology exam. Learned I had the Lynch Syndrome gene–in particular a variant of Lynch Syndrome called Muir-Torre Syndrome, which further predisposes me to a rare and aggressive form of skin cancer: Sebaceous Carcinoma. In layman’s terms: oil gland cancer.
Over the years since, I’ve endured hundreds of skin biopsies, scores of sebaceous adenomas, and a dozen or so sebaceous carcinomas… all of which have been excised successfully with no recurrences. Along the way, I’ve also had two Squamous Cell Skin Cancers–one excised from my nose and another from my right middle finger, and a precancerous Melanoma excised from my back.
But it gets even better: In the process of doing surveillance for my Lynch Syndrome, it was discovered (January 2018) that I also have Chronic Lymphocytic Leukemia.
And if that wasn’t enough: While being treated for Leukemia and while doing the surveillance for the Lynch Syndrome it was discovered (September 2020) that I have Advanced Prostate Cancer.
And if that that wasn’t enough: In the course of doing surveillance for the Lynch Syndrome and treatment for the Leukemia and the prostate cancer it was discovered that I have a liver lesion that is Metastatic Colon Cancer (despite there being no evidence of having a primary colon cancer except for the colon cancer which was declared cured a decade earlier).
Yet here I am (as of November 4, 2025)… being treated quite successfully… and rising every day with the conviction that life is still worth living and fighting for.
back to… Table of Contents
My Skin Cancers
The “Easy” Cancer
Except for Melanoma, most people think about skin cancer like it’s no big deal.
Of course, these are people who have never had skin cancer… or at least who have never experienced skin cancer in the way that I’m about to describe in this series of articles.
I’m talking because I know: Squamous Cell Skin Cancer twice, Sebaceous Carcinoma a dozen times (and dozens more Sebaceous Adenomas), and one pre-cancerous Melanoma to boot.
I’m what they call at the dermatology clinic a “frequent flyer”. If I live long enough, I suspect there are plenty more on the way.
An Itch on My Nose
It all started with a tiny bump on my nose that just wouldn’t stop itching.
And so I scratched it. And it bled. A kind of bleeding that gushed way too much and took forever to stop. Don’t freak out, I told myself. Maybe I just scratched too hard.
But I woke up the next morning to a white pillowcase covered in huge blotches of dried blood. My whole body tightened. And one word came to mind: Cancer. It had to be.
I scheduled a dermatology appointment.
Six weeks out was the best they could do. In the meantime, I resisted picking at it as best I could and covered it with a band aid so it didn’t bleed all over the place.
Six weeks. No kidding.
Six weeks to ruminate about all the horrible possibilities.
Biopsy Day
Dermatologist appointment day… the typical annoying paperwork… the usual wait… leading to a sterile exam room full of tracks and syringes…
… wait some more… knock at the door… “I’m doctor so and so”… a quick visual with magnifying glass… three needle sticks to the nose (ouch)… quickly numbed… punch biopsy… sutured closed… bandage applied… all done in five minutes.
Doctor casually mentions possible Basal Cell or Squamous Cell Carcinoma…
Wound care instructions given…
Suture removal scheduled ten days out…
One to two weeks for the pathology report to arrive…
If benign, will get a postcard in the mail.
If cancer, will get a call from the doctor.
More days and hours to ruminate about the best and worst that can happen.
How many days and hours I’ll have to wait I do not know.
Wasted Worry
You don’t think of all the questions you should have asked until after you’ve left the doctor’s office…
And so, you go home and google “basal cell” and “squamous cell carcinoma” and you read what Wikipedia, WebMD, and the Mayo Clinic have to say… with the hope of putting yourself at ease even if it is cancer… and what do you find? A bunch of medical jargon and horrifying images that that are no help at all… and leave you feeling even more anxious than you were before.
The questions are so obvious…
- If it is cancer, was it discovered early?
- What does “early” even mean?
- Has the cancer possibly already spread to my lymph nodes?
- Can I die from this?
- Will I die from this?
- How curable is a case like mine?
- Will I lose my nose?
- Will I be scary to children after I recover?
- And I realize I don’t know a single answer to any of the above.
If I was the doctor–knowing what I know now–I would send the message, totally unsolicited, and loud and clear. “Frank, you presented not just early, but very early… well done. Even if it is cancer, you are not going to die from it. You are not going to lose your nose. You are not going to be scary to children after you recover. It’s going to suck for a couple of weeks while we get you fixed up, but you are going to be ok.”
Why did the doctor not tell me these things in advance?
Why did I have to endure so many days and weeks of unnecessary anxiety, nausea and insomnia worrying about what really did turn out to be my “easy” cancer?
The Waiting
They said it’d take one to two weeks for the pathology report to arrive…
If benign, I’d get a postcard in the mail.
If cancerous, I’d get a call from the doctor.
And so, I wait…
And with each passing day, a trip to the mailbox becomes an ever more stressful ordeal… heart beats faster as I see the mailman arrive… then as I open that squeaky mailbox door… with the thin hope that a simple post card is waiting inside.
And with each passing day, my ringtone feels more and more like the jolt from a taser. Every time the phone rings during business hours, my heart skips a beat. I can feel my anxiety rise as 8 am approaches and feel it subside as 6pm comes and goes. But the reprieve is only partial… and only temporary.
The days come and go.
Nothing but junk mail and medical bills… and just the usual smattering of phone calls, none from the doctor.
All the while, I imagine a chunk of my nose being sliced, stained, and mounted on a microscope slide in some sterile laboratory.
Insomnia and nausea ensue.
Anxiety grips me head to toe.
Just talking about it years later makes my palms sweat.
The Wait is Over
Ten agonizing days pass. The postcard never came…
But the phone call did. It was a Friday, just before lunchtime. Funny how you remember such things.
Phone rings. Heart jumps. Caller ID reads skin doctor’s name. Deep breath. Exhale. And brace myself.
“Hi, Mister Peter. This is Doctor so and so. Unfortunately…” and then something about squamous cell carcinoma. My heart sank and stomach churned.
Then something about it being “minimally invasive” and tending to be “readily treatable”.
For a moment, a deep sense of relief. Until they continued: “Although these things can be aggressive”.
And my knees turned to rubber.
Given the name of a surgeon to call.
Have a nice weekend.
At least I know what kind of skin cancer I have.
Meet the Surgeon
Two more anxiety-filled weeks pass until I met with a surgeon who specialized in something called Mohs Surgery…
I’d never heard of it before.
Named after its original developer Doctor Frederic Mohs, it’s the meticulous process of progressively removing and evaluating thin layers of cancerous skin at the cellular level until only cancer-free tissue remains.
Anyway, after greeting each other, the first thing out of the surgeon’s mouth was “You’re a bit young to be here, aren’t you?”
“F&ck me!” I thought to myself. How did the doctor think that made me feel?
Anyway, after a quick examination of my nose with a magnifying glass, he proceeds to palpate my jaw and neck.
“Holy f&cking Sh$t!” Now my stress is really going through the roof, absolutely convinced that the cancer has already spread to my lymph nodes. At the very least.
I blurted out: “Doc, is this going to kill me? Am I going to lose my nose? Am I going to be scary to children?”
And then he said something totally unexpected… that he was 99% sure that the cancer was minimally invasive, that it had not metastasized, that it was not life-threatening, that I would not lose my nose, and that I would not be scary to children.
“WTF?!” Right then and there, I broke down in tears of exhaustion.
The medical assistant who was present seemed baffled by my tears… as if I was overreacting and being a big crybaby.
At the least the doctor appeared to understand my response… and put his hand firmly and reassuringly on my shoulder.
But why did it take weeks of wasted worry on my part to get to this point?
Mohs Surgery Scheduled
Mohs surgery scheduled three months out…
Three months. No kidding.
Despite the reassuring words of my surgeon, three more months where I could not help but wonder: How fast is my cancer growing and spreading in the meantime?
Three more months to realize that he said there’s a 99% chance that everything will be fine. 99%. Pretty good odds. But not 100%.
And then I wondered if he knew it would be three more months until I saw him again–three full months for things to change. I never asked the surgeon about the risk incurred by such a wait time because I never expected it would take that long to find a slot on his schedule. And now my head is filled with a fresh batch of dark thoughts, which includes a very simple question: Would you choose to play a game where you had a 1 in a 100 chance of dying a slow, painful, disfiguring death? And a full quarter of a year to think about it?
And that’s not all…
In the very same timeframe that I am dealing with this “easy” cancer, I’d already had half of my colon removed due to colon cancer. I was already under surveillance for Lynch Syndrome. I was already bracing myself for a recurrence of colon cancer or for another GI or GU system cancer to be discovered. I already had a sebaceous carcinoma excised from my chest with the expectation that the next lesion is likely to pop up any day.
Anxiety on top of anxiety on top of anxiety.
And all to what end, I am compelled to ask.
Mohs Surgery Day
I can’t possibly do justice to just how unpleasant and stressful Mohs surgery is in just a few words, but here goes nothing…
Aside: Because the cancer was located on the petri dish known as my nose, I needed to start an oral antibiotic beforehand (Yes, you can add wound infection to your list of things to worry about)
Surgery Day. Imagine a medium-sized waiting room, chairs arranged around three of the walls. Along the fourth wall there’s a door and a table with coffee, tea, orange juice, and some snacks.
One by one, each of a dozen skin cancer patients enters. We greet each other and exchange some small talk about the January weather or something. Nobody dares to bring up the topic du jour–skin cancer and Mohs surgery.
Then it begins. A smiling medical assistant (MA) pops her head in, calls a name, and off that person goes to start their Mohs surgery process. This repeats every ten minutes or so until every name has been called. You never know which name will be called in advance, which adds some more anxiety that you did not plan for.
It took about an hour and a half for my name to be called for the first time: “Mister Peter?” Short walk to a typical-looking medical exam room. Five or six needle sticks to the nose. Only the first two hurt. Then your nose just feels like this lifeless blob in the middle of your face. No time wasted. Patch of skin excised. No sense of how deep or wide. Wound lightly dressed. Biopsy sent to the lab. Me back to the waiting room. (By the way, I really appreciated the professional, calming bedside manner of my surgeon)
After everyone has had their turn and returned to the waiting room, everybody’s got a bandage somewhere—typically in an awkward, prominent, and sensitive place on their head or face. Now there’s no secret about where everyone has skin cancer, although what kind still remains confidential.
The process continues. A name gets called and off they go. Each precious soul, like me, hoping it’s their last time.
Each cycle takes somewhere between one and half and two hours. That’s a lot of time to think about what’s happening–a lot of time to notice things like who does not return to the waiting area, to notice that the sequence of names called has changed from the previous cycle, and to wonder what all that means. And so again, you have that extra tinge of anxiety because you still don’t know when your name might be called.
I also notice that I’m the youngest person there. All the other patients seem to be at least a generation if not two generations older than me. And then I wonder if this is what my future looks like for decades to come. Is this my first trip on my way to becoming a “frequent flier”?
Another anxiety-filled two hours passes: “Mister Peter?”. Two hours must be a good thing, right? More needle sticks. More skin removed. You still don’t know how much.
As each cycle came and went, a patient here and there picks up their belongings and heads home, apparently cured. Naturally we all congratulate them and wish them well. There is no hint of jealousy. We are genuinely happy for them and take their success as a sign of hope for the rest of us.
The cycles continue. Catered lunch arrives somewhere along the way. Name gets called. Heart pounds a little faster each time–hoping to be told your cancer is gone, but bracing to be told they (and you) still have work to do.
Long painful story short, my name was called six times that day. By the end, it had already been about ten hours and it was down to just me and one other patient. Mercifully, the sixth time I entered the exam room, the MA whispers “Your cancer is gone, Mister Peter.”
Relief for sure, but not party time.
Having survived one of the longest and hardest days of my life, I’m still not done, because now I have an open wound on my nose that needs fixed the very next day.
Stay. Out. Of. The. Sun.
Mohs Reconstruction Day
Having survived a ten-hour ordeal on my Mohs surgery day, I’m still not done, because I still have an open wound on my nose…
*** Warning: Disturbing Image Below ***
The standard practice is to return the very next day (while the wound is fresh) for what is called “reconstruction”, which in my case sounds a lot worse than it really was.
Anyway, I had three options (all clearly explained by my most competent surgeon):
- Option #1. Do nothing to seal the wound (Pros: no further surgery required. Cons: leaves a divot in your nose and has the highest probability of recurrence)
- Option #2. Cover wound with a flap of nearby skin (Pros: the best chance of healing properly and a good option cosmetically. Cons: more surgery required, more trauma to the nose)
- Option #3. Do a graft using skin from behind the ear (Pros: cosmetically a good option, no further trauma to your nose. Cons: two surgery sites, slightly higher risk of graft failure)
I chose option #2 because it would look okay and have the highest chance of healing properly and permanently.
Reconstruction Day
More needlesticks to the nose. Only the first one hurts. More surgery to prep the wound and create the flap, but no big deal compared to the epic ordeal the day before.
Another two weeks with sutures in your nose. Keep the wound clean. Some anxiety still about infection or the graft failing. As the days go by, my face turned black and blue in places I didn’t expect, but everything eventually healed up just fine. I am happy I chose this reconstruction option. A decade later and counting, my nose looks ok and the cancer has not recurred.
But I want to leave you with a photograph taken just after the dressing was removed…
I want you to remember this picture because I don’t want you to go through this… keeping in mind that this really was my “easy” cancer.
Stay. Out. Of. The. Sun!
Looking Back
Only in retrospect did I realize that my skin cancer case was presented early and was readily treatable…
Only in retrospect, did I realize that this really was my easy cancer–because it wasn’t going to kill me or make me scary to children.
Only in retrospect, did I realize that I wasted four months of anxiety, nausea, and insomnia.
But I did not know any of these things at the time.
How could I know? When none of the experts told me what to expect.
I understand that doctors can’t make promises, but they can certainly refrain from off-hand remarks that might send your stress level through the roof.
I also understand, because of our litigious society, that doctors need to be defensive, but they can certainly be sensitive to the stress you are enduring and can share something to help you manage your expectations and put things into perspective.
Despite their many years of experience, the medical professionals in my dermatology clinic apparently have no clue what it feels like to spend weeks preparing oneself to die a slow, painful, disfiguring death.
Despite their many years of experience, the medical professionals in my dermatology clinic told me nothing about what to expect during the healing process.
Instead, my imagination ran wild and sickened me for months… both before and after my surgery.
So much unnecessary trauma that could have been easily avoided… if only their life-saving services were delivered with a wee bit of empathy.
Don’t they realize that a patient’s emotional well-being is also part of their healthcare?
Frank’s Message to Other Patients:
(1) Early detection will (not can)… WILL save your life… and will also save you from disability and disfigurement.
(2) The treatment process may be extremely stressful and traumatizing, but you are going to get through it and be ok.
Heed these Words
Did you know that there’s a wide open secret on what causes most skin cancers?
It’s called the Sun. More specifically, the sun’s ultraviolet radiation.
So, repeat after me…
The sun’s ultraviolet rays are CARCINOGENIC!
The sun’s ultraviolet rays are CARCINOGENIC!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!!!
The sun’s ultraviolet rays are CARCINOGENIC!!!!!!!!!
Protect yourself from them.
Stay out of the Sun.
Wear long sleeves.
Wear a wide brim hat.
Wear sunscreen.
Wear sunglasses.
Wear gloves when you drive.
Your beautiful and healthy skin will thank you years from now.
Please indulge me now as I vent and direct a deadly serious question to the entire dermatology profession: Why the F are you so eminently silent on this matter? (We all know the answer, of course).
back to… Table of Contents
My Colon Cancer
Poster Child
One reason I’ve made it to age 64 (and counting) is that I got my “routine” colon cancer screening (colonoscopy) at age 50…
Without that “routine” colonoscopy, I would have most certainly not discovered my colon cancer until I became symptomatic. By then it might have been too late. It certainly would have put me on a more torturous path than I’m on now.
Instead, I was one of the lucky ones.
Long story short, my colon cancer was stage 1–confined to my colon with no apparent spread to the neighboring lymph nodes–treated by surgery alone. No chemo or radiation required. My entire ascending and half of my transverse colon removed. Free appendectomy included. Declared cured at the time, although the story became more “interesting” a decade later (more on that in subsequent posts).
In summary, that “routine” colonoscopy saved my life and eliminated years of unnecessary suffering and probable death. I stand before you as a poster child for early detection.
No matter who you are, get your routine colonoscopy at an appropriate age. As of this writing, the current guidance is for those with no personal or family history of cancer and no genetic predispositions to get their first colonoscopy at age 45, but those with a personal or family history of colon cancer or a genetic predisposition should work with their doctors to determine an appropriate age.
Poster child Frank is talking because he knows and sends the following message loud and clear: Get a colonoscopy at an age that suits your particular medical situation.
DO IT no matter how scary it sounds.
DO IT no matter how inconvenient it may be.
DO IT no matter now healthy you think you are.
DO IT for you.
DO IT for your family and friends, too.
Chances are you’ll have no polyps and no evidence of disease… and you will come away with some well-earned peace of mind.
And in the chance that you do have polyps, they will be removed–absolutely painlessly–during the colonoscopy and you will have reduced your risk of colon cancer immensely. And then you can come up with a plan to stay ahead of any future problems.
And in the small chance they do find cancer, early detection gives you a fighting chance where the numbers are all on your side.
So, please just get your colonoscopy… and encourage all your loved ones to get one too.
“We Found Something”
In my previous post, I may have given the impression that curing what turned out be my stage 1 Colon Cancer was no big deal…
I assure you it was anything but.
As fortuitous as the early detection of my colon cancer was in retrospect, it was just the beginning of a four-month ordeal that began with three horrifying words upon waking up after my “routine” colonoscopy.
It’s a hell of a thing, still groggy from the sedation, to hear the doctor say: “We found something.”
Biopsies sent to lab.
Blood tests ordered.
Referred to a thoracic surgeon.
Surgeon?!
In a single heartbeat, life became deadly serious.
Surgery Indicated
Hemicolectomy. No other options.
Surgery scheduled three months out. THREE MONTHS.
Ninety-one days to be exact.
My heart sank. I would have signed up to have the surgery performed that very minute.
Three months! Ninety-one stress filled days to think about the worst that could happen.
But before getting too wrapped up in worst that could happen, let’s talk about the best that could happen. I don’t even know what best means. Best for who? For me? For the world? For my family and friends? Best compared to what? I am compelled to ask.
I suspect that most people would automatically consider the best outcome to be a full cure with no further treatment required. I know. I used to be one of them (a deadly serious topic for another day.) But I consider that only the second best thing.
Leaving my thoughts and feelings about what best is, I realized that the best easiest thing that could happen to me was to die on the operating table. An absolutely painless passing into the eternal sleep. No more anxiety. No more nausea. No more insomnia. No more hard decisions. No more agonizing about the meaning and course of my life. Just a peaceful return to the infinite nothingness that preceded my birth.
The worst that could happen includes a long list of horrors: Waking up and learning that my entire colon was removed… that I had a colostomy… that my cancer had spread… that I needed more surgery… that I needed chemo and radiation… that my bowels leaked and needed to fight a lengthy battle with sepsis. Any or all the above could happen.
Of course such rumination isn’t good for my health. All I need to know is that I’m having the surgery and plan to be a good patient, come what may.
Only ninety-one days until hemicolectomy day!
Stresses and Traumas
Indulge me as I recount the many stresses & traumas accumulated over the course of four months after hearing those three horrifying words…
Trauma #1. Learning that “something” was a mass the size of a flattened golf ball embedded in the hepatic flexure of my large intestine–among the worst places to have a polyp. And, because of its size, shape, and location learning that it was impossible remove endoscopically.
Trauma #2. Actually seeing, not merely knowing about, the horrifying images of the large, ugly mass growing inside of me.
Trauma #3. Waiting for the pathology report from the biopsies taken during my colonoscopy.
Trauma #4. Two weeks of anxiety waiting for my initial consultation with the surgeon who would remove the polyp.
Trauma #5. Reading the pathology saying I have an adenoma, negative for cancer, but the kind that almost always becomes cancer.
Trauma #6. Learning that the negative results were not definitive due the polyp’s large size and the fact that the biopsies were just samples of the lesion.
Trauma #7. Learning that the negative results were a surprise in the sense that most polyps of this size and shape are cancerous.
Trauma #8. The first meeting with my surgeon, expecting to discuss a minimally invasive local excision of the polyp. Surprise! The real plan is the total removal of my ascending colon and half of my transverse colon, along with my appendix and neighboring lymph nodes
Trauma #9. Waiting for blood work in order to measure the levels of colon cancer antigens in my system.
Trauma #10. Getting the test result showing that my colon cancer antigens levels were below the threshold that would indicate cancer. You’d think this would be cause for relief, until you learn that this was a huge surprise to the doctors and the fact that such test is not definitive.
Aside: At my second meeting with the surgeon, they described the surgical procedure–at my request. The plan is to pull my intestines out through an incision just above my belly button and do all the work outside my body, just like repairing a leaky hose, then to shove it all back in. Sounds a lot simpler that I expected. Such surgery considered major, but not high risk, giving me some peace of mind.
Trauma #11. Surgery scheduled three months out. THREE MONTHS. My heart sank. I would have signed up to have the surgery performed that very minute.
Trauma #12. Three months to imagine this big, ugly mass still growing inside of me.
Trauma #13. Three months to agonize about who to tell about my situation… what to tell them… how to tell them… when to tell them… if to tell them.
Trauma #14. Three months stressing about getting my affairs in order, just in case.
Trauma #15. Three months to ruminate about all the things that can go wrong with the surgery and recovery.
Trauma #16. Three more months to freak out about what they might find once they get in there.
Trauma #17. And three months to let my imagination run wild about all the horrible lives I might have to live after surviving the surgery.
How in a million years am I NOT going to ruminate about all the above?
Coping Behaviors
Three traumatic months of waiting and ruminating–seriously considering that they might be my last…
And as I ponder how I survived that ordeal a dozen years ago, three coping behaviors stand out in my cancer brain memory.
First, walking briskly to the grocery store in the winter air made me feel healthy and alive, at least for a little while each day.
Second, playing piano— the most enjoyable, engaging meditation I am capable of and fortunate to have in my life.
And third, falling asleep on the couch every night while binge watching “Law and Order” reruns (the Vincent D’Onofrio version).
I honestly can’t tell you how I got through the hours that remained without losing hope or going insane. It’s all just a blur now. I suspect I was able to distract myself away from the anxiety, stress, and worry of it all by keeping busy doing those chores and errands required of any other human fortunate enough to live in the developed world.
Final Wishes, Just in Case
The preparation for my hemicolectomy would not have been complete without the sobering, halting process of getting my affairs in order…
… just in case I don’t survive the surgery or recovery.
It’s a hell of thing to think about and put all your final wishes in writing.
… to arrange for a trusted friend to assume power of attorney should you lose the capacity to speak for yourself.
… to decide who will receive what remains of your money and material possessions when you’re gone.
… to arrange for a trusted executor to assume responsibility for managing your estate.
… and to decide the disposition of your lifeless body for eternity.
Do Not Resuscitate
Just in case my surgery or recovery goes south…
Do Not Resuscitate!
DNR!
D. N. R.
Please just let me go in peace.
Seriously.
If I wake up and learn that anyone demanded heroic measures to keep me alive because that’s what they wanted, I would never forgive them.
The Letter
About a month after I heard those three horrible words, I got a letter from the gastroenterology clinic that did my colonoscopy…
It said that they did not find any polyps and recommend I come back in five years for my next “routine” colonoscopy.
WTF?
A cruel joke?
A clerical error?
I was incredulous, of course… and beside myself with anger.
Naturally, I called the clinic to clear things up… to confirm, of course, that there was no reprieve… that I still had to go through with my hemicolectomy.
Anyway, I mention it because it’s just one of many traumatic memories I’ve accumulated over the years… one of many where the left hand doesn’t know what the right hand is doing… and reason to lose confidence in the so-called healthcare system.
Rant complete. I have no more heartbeats to waste on anything that doesn’t align with my life’s purpose. And so, I had to let it go. I shredded the letter and got back to the business of preparing for surgery day.
Night Before Surgery
Fast forward. Somehow, someway I put a full third of a year of rumination and preparation behind me…
… and I remember feeling remarkably serene the night before my hemicolectomy.
Believe it or not, I was truly at peace. For real. Because I knew I’d done everything I could to maximize my chances of success… and because I did everything I could to minimize the burden I would be on my family and friends.
That evening, I handed hardcopies of my will, final wishes, and power of attorney to my agents… and verbally expressed to them those things that were most important to me should things go wrong.
That night I had the best sleep I’d had since I heard those three horrible words.
Surgery Day Morning
4:00 am 12 February 2012. Alarm clock shocks me awake…
“Here we go… Today’s the day.”
And I noticed something that totally blew me away: Despite all the stress and anxiety that consumed me over the past four months, I felt remarkably and absolutely at peace.
To this day, I struggle to find the words to describe my state of mind that morning. Everything seemed to happen on autopilot… and yet I was a fully present witness to it all… as if all my self-consciousness disappeared… as if I became a detached observer… neither sad nor afraid… wrapped in absolute serenity.
And so, I went about my business… taking a shower, brushing my teeth, putting on my socks and shoes, driving to the hospital… casually realizing, but not bothered by, the possibility that I may be doing all these simple things for the very last time.
I arrived at the hospital a bit early… and noticed a grand piano in the lobby. A lovely surprise. I sat down, lifted the lid, and quietly played a mutant version of “Take the Long Way Home” as I mumbled the lyrics to myself… Knowing smiles and nods of appreciation from the only two people sitting across the lobby… surely about to have a big day themselves.
I smiled and nodded in return and gently lowered the lid, knowing that this might be the last time I ever got to play. C’est la vie.
And I remember telling myself, as I walked over to check in, that if this was the end, I was going to go down with gratitude, good humor, courage, and dignity. Oddly, I did not feel like a hero.
And so, I made sure to have fun with and to thank everyone I came into contact with that morning. Everyone. The receptionist, nurses, techs, and doctors. To thank them not just for coming to work that day, but for all the time, energy, and discipline they invested in learning how to do what they were all about to do.
It is Done
Fast forward yet again. Waking up in a typical hospital bed in a typical double room…
Like a time traveler arriving in an unfamiliar world… tubes and wires everywhere… monitors beeping away.
“Wow. I’m still alive.” I dispassionately thought to myself… as I tried to imagine the physical trauma that had just been inflicted upon my innards.
Mercifully, I was immediately advised by the nurses that the surgery went well.
But I was also informed that at least five challenging days in the hospital remained.
Not to mention the full report of what the surgeon discovered. And not to mention the pathology report on whatever was removed.
Recovery
Having never felt this weak and helpless in my entire life, the recovery process began…
Ticking off each milestone one by one…
Sitting up for the first time.
Removing my nasal cannula.
Standing up for the first time… and dealing with the immediate wave of nausea.
A slow walk to the door of the room and back.
A short trip down the hall with my IV and catheter/urine bag in tow.
Removal of my foley catheter.
First normal urination.
Switching my pain medication from Dilautid to Toradol.
Dealing with an alarming anaphylactic reaction (likely to the Toradol)
Drinking prune juice in order to wake up my GI tract.
First tentative bowel movement, terrified that I would rip out the sutures that reconnected what remained of my large intestine to my small intestine.
First solid food.
Removal of my IV.
Along the way, deriving an enormous amount of strength by looking out the window down at the children’s wing, and feeling that those precious, innocent kids and their parents were all stronger and more courageous than I will ever be.
Good News
My surgeon came by late afternoon on day four…
Smile on her face… confirming that the lesion was indeed cancerous, only stage one, with no apparent spread to the lymph nodes.
I remember her exact words: “You’re cured, bud.”
I wept right in front of her–four months of anxiety, insomnia, and nausea pouring out of me all at once.
I wish I could say these were tears of joy, but this was no celebration. It was more like the utter collapse of someone who had just gotten a last second reprieve on the gallows.
Superheroes
No account of my colon cancer surgery would be complete without celebrating the nurses and techs who tended to me round the clock…
Heroes and angels every one.
I owe them all a debt I can never repay. All I do is to pay forward their strength, dedication, and compassion as best I can with my new lease on life.
A Complication
Fast forward three years after my successful hemicolectomy and being declared cured of colon cancer…
Intermittent pain in the middle of my belly. At first, thinking it nothing more than a strained abdominal muscle that would soon heal itself. Alas, the pain only grew sharper and more persistent. Suspicion of a pulled muscle turned into worry that my cancer had returned.
To make another long, painful story short, the verdict: umbilical hernia. In other words, my intestines were pushing out through my belly button, the same route they followed during my hemicolectomy. Ouch.
More consults. More waiting. More uncertainty. More surgery. More pain. More worry. More money. More precious time and energy lost forever.
But at least my cancer hadn’t returned.
The Saga Continues
I wish my successful hemicolectomy in 2012 and umbilical hernia repair in 2015 were the end of my Colon Cancer story…
No such luck.
Fast forward to the Spring of 2022 when an eyes to thighs PET scan performed in order to stage my Prostate Cancer and CLL and to monitor me for possible Lynch Syndrome cancers revealed that I had a surprisingly large lesion on my liver that seemed to come out of nowhere.
To make yet another long, traumatic story short, a subsequent liver biopsy revealed that I likely had Metastatic Colon Cancer.
No kidding. Ten years after being declared cured.
But the perplexing thing–based on subsequent colonoscopies, EGDs, blood work, PET scans, and MRIs–is that there is no evidence of a primary GI tract cancer.
And so, the saga continues.
As of November 2, 2025 I am still here and living a meaningful, purposeful life–being treated fairly successfully for advanced Prostate Cancer, advanced Chronic Lymphocytic Leukemia, and advanced Colon Cancer, all the while doing surveillance for Lynch Syndrome and having sebaceous lesions excised as needed.
back to… Table of Contents
My Lynch Syndrome
“Nothing to Worry About”
Summer 2012. A seemingly innocuous bump in the middle of my back…
… colorless and painless… A medium-sized raised area that felt like it should pop, but wouldn’t… Been there for years… something I didn’t even notice or think about unless I brushed back against something.
And so, I went to the dermatologist, who confidently told me to stop picking at it. That it was nothing to worry about. Seriously. I resisted and told them that I would keep trying to pop it until they biopsied it. I just wanted this thing off my body.
They relented and did so–doing what’s called a punch biopsy. A week and a half later, the verdict was in: Atypical Sebaceous Adenoma. Not cancer, but definitely abnormal and a precursor to becoming cancer-–a rare form of skin cancer called Sebaceous Carcinoma (oil gland cancer).
But that wasn’t all.
For one, I needed to come back for more surgery because the margins of the biopsy site were abnormal and therefore still prone to developing into cancer.
And for two, the pathology report also said that I had the genetic mutation for something called Muir-Torre Syndrome, a variant of something called Lynch Syndrome.
I was quietly referred to a genetic counselor at a local cancer center.
A far cry from “Stop picking at it. It’s nothing to worry about.”
And So It Begins
It’s a hell of a thing to pull up to a building that reads “Something Something Something CANCER Center”…
… and realizing that YOU are the reason you’re there.
Surreal. Feeling totally detached from my body, yet somehow able to drive there, park the car safely, get out, move my legs, walk through the front door, check, in with the smiling receptionist, and survive the twenty-minute wait for my name to be called.
As I sat in the waiting area, a dozen or so cancer patients shuffle by or are wheeled past me—each in a hospital gown with IV in tow—some bandaged, bruised, and bald—faces and bodies as if all the life had been sucked out of them.
Is this what my future looks like?
F&ck.
My heart sank and bled for each and every one of them—especially for the ones who were way too young to be there.
Genetic Counseling
It took just a few minutes and a handful of questions about my personal and family health histories…
The pathology report for the lesion recently excised from my back.
The Sebaceous Carcinoma excised from my chest the year before (and the very casual mention of Muir-Torre Syndrome by my dermatologist at the time).
The fact that I was a Colon Cancer survivor.
The fact that my mother had Endometrial Cancer in her forties.
The fact that her father died from Bladder Cancer at age fifty-six.
It all added up, as clear as could be: Lynch Syndrome (a particular variant called Muir-Torre Syndrome)
It was also clear that I inherited it from my mother, that she inherited it from her father, that it had been killing people on my mother’s side of the family for generations, and that it was still with us. Besides the shock of the news, it blew my mind that it took so long for this “family secret” to be discovered.
I was handed some literature on Lynch Syndrome and Muir-Torre Syndrome, recommended a surveillance program, and referred to an oncologist who specializes in cancer genetics.
Not what I hoped to be doing with my life.
What is Lynch Syndrome?
Lynch Syndrome is a hereditary cancer syndrome that predisposes one to a long list of genitourinary and gastrointestinal system cancers…
In particular, Lynch Syndrome is associated with an extremely high risk of Colon Cancer in both sexes and Endometrial (Uterine) Cancer in women.
In addition, the variant of Lynch called Muir-Torre Syndrome further predisposes one to a rare and aggressive form of skin cancer called Sebaceous Carcinoma (oil gland cancer).
In layman’s terms, having the Lynch mutation means you do not have the genes required to repair mistakes made during DNA replication. In other words, the Lynch mutation does not cause cancer per se, but it renders one significantly more vulnerable to getting cancer.
Importantly, Lynch is a hereditary syndrome. If one parent has the Lynch mutation, there is a 50% chance that it will be inherited by a child. (Naturally, this has some profound implications that will be discussed in subsequent posts)
learn more… Lynch Syndrome International
As of this writing, the prevalence of Lynch Syndrome is estimated to be around 1 in 300–suggesting that over a million Americans alone have the Lynch mutation. It also suggests, as of this writing, that most of them don’t know they have it. This, of course, is one reason I was compelled to come out with my cancer story.
Telling Your Family
“Mom, I have something to tell you…
I just learned why I got Colon Cancer and Sebaceous Carcinoma. I know why you had Endometrial Cancer years ago. And I know what killed your dad at fifty-six. We have something called Lynch Syndrome.”
I had to tell her so that she could protect herself, so that she could inform her siblings that they may also have it, and that they may have passed it on to their children and beyond.
By the way, informing my own siblings that they, too, might have it (a 50% chance) was a separate and no less heavy conversation.
Alas, the first place my mother’s heart and mind went was to express guilt at “having given me a disease”. Of course, no such thing ever crossed my mind. There’s no reason to feel responsible for something nobody knew anything about until now.
And I assured her that I felt no differently about her than she did about her own father.
Perspective
At first, I was devastated by the Lynch Syndrome diagnosis…
In fact, my very second thought (after needing to tell my mother about it) was that the bladder cancer that killed her father (my maternal grandfather) at the age of 56 was also my destiny.
I was absolutely convinced that I’d never see my 57th birthday. I did not merely think this. I really believed it… and lived my life accordingly. Why wouldn’t I believe and accept this as my fate? My body already knows how to make colon cancer and sebaceous carcinomas. Why wouldn’t it make more of them and toss in a few more cancers just for fun?
Yet here I am, still. 64.8 years old… and able to share my story in the hope that it might help others.
It’s been a tortuous and torturous path, but I’m still here because of that “routine” colonoscopy at age 50. I’m still here because I pushed to have that lesion on my back biopsied. I’m still here because I got referred to a genetic counselor. I’m still here because the genetic counselor referred me to a cancer geneticist. And I’m still here because I’ve been doing some simple (not to be confused with easy) things required to nip most Lynch cancers in the bud.
(I’m still here for lots of other reasons, too–reasons better shared at a later time so that I may give them their proper due)
Message: If you do the appropriate surveillance, most Lynch cancers can be prevented or cured in the early stages… and all the numbers are on your side.
Surveillance
Since 2012, I have been under surveillance for the long list of possible Lynch Syndrome and Muir-Torre Syndrome cancers…
… a program that includes regularly scheduled dermatological exams, blood work, urinalysis, imaging, colonoscopies, endoscopies, cystoscopies, and clinical examinations.
I have since had over two hundred skin biopsies and multiple surgeries to excise a dozen or so sebaceous carcinomas… as well as dozens more sebaceous adenomas, which if left untreated would have likely become cancer.
I have had at least a dozen colonoscopies and upper endoscopies that have painlessly removed multiple pre-cancerous (adenomatous) polyps which almost certainly would have become cancerous if left untreated.
The road hasn’t been easy, but I am still here… six full years and counting past what I was convinced would surely be my expiration date.
Privacy Issues
I was already retired and fully vested in my health insurance program when I learned I had Lynch Syndrome…
And so, I was not burdened with the ethical and legal considerations raised by two pertinent questions:
Does having the Lynch mutation count as a pre-existing condition that an insurance company would hold against you?
Does having Lynch Syndrome make an employer think twice about hiring you?
I would never dare to give specific advice regarding the ethical and legal ramifications of your privacy concerns. Instead, seek the guidance from a genetics professional who specializes in such matters.
Having Children
Knowing that one carries the Lynch Syndrome mutation has an enormous impact on deciding whether to have children or not…
Disclosure: I don’t have children–by choice–a decision, by the way, that has nothing to do with my Lynch Syndrome diagnosis.
Leaving things to chance is like flipping a coin–a 50% chance of passing the Lynch mutation to your children.
But, as of this writing, my understanding is that there are ways to have children without the risk of passing on the Lynch mutation. Beyond that, I would never dare to give specific ethical or medical advice. As always, seek guidance from your doctor and medical and genetics professionals who specialize in such matters.
Telling Your Children
Because I don’t have children, I’ve never been burdened with deciding if, when, and how to tell them that I have the Lynch Syndrome mutation…
… and that they may also have it (a 50% chance).
Of course, this begs the question: What are the ethics of having your kids tested for the Lynch mutation without their knowledge?
The rationale for doing so is that, if they test negative, you can avoid all the anxiety and stress involved with being open about it all.
Of course, if they test positive, the question of “if” no longer matters. But you are left with the heavy questions of when and how to tell them and deciding what surveillance is appropriate.
I’d never dare to give specific advice in this area. Instead, seek the guidance from your doctors and genetics professionals who will help you make ethical and rational decisions regarding such matters.
Knowledge is Power
Allow me to close the series out with some empowering takeaways that put a Lynch Syndrome diagnosis in the proper perspective… and will–not just can, but WILL–keep you and your loved ones alive.
First, don’t bury your head in the sand.
If you have a family history of cancer–of the uterus, ovaries, bladder, ureter, kidney, stomach, small intestine, liver, pancreas, prostate, and oil glands (there may be others), take seriously the possibility that there is a hereditary component to such histories.
Especially–I repeat ESPECIALLY–if there’s a family history of colon or uterine cancer at a young age, talk to your doctors and get tested for Lynch Syndrome.
And if you happen to test positive for the Lynch mutation, don’t hide it from your family. As difficult as that conversation might be, sharing that information may save others in your family as well.
Second, if you discover that you or a loved one has Lynch Syndrome, don’t freak out.
Realize that such knowledge—as upsetting as it—is power. The power to design a surveillance program with your doctors that will enable you to “stay ahead” of the most common types of Lynch cancers, and thus to swing your odds of living a relatively long and healthy life hugely in your favor.
Specifically, colon cancer is by far the most prevalent of the Lynch cancers–with a lifetime prevalence so high that you should just assume your body is going to make colon polyps. That said, the great news is this: Getting an annual colonoscopy and upper endoscopy (EGD) almost guarantees that you’ll painlessly nip any pre-cancerous polyps (adenomas) in the bud and keep you alive.
Women, of course, should develop a surveillance plan with their gynecologist (which may include a preventative hysterectomy). I dare not give any specific advice beyond this mention.
And if you’ve got the Muir-Torre variation, regular dermatology exams are almost guaranteed to nip sebaceous adenomas in the bud and keep you alive and beautiful.
There are other valuable surveillance methods as well–blood work, urinalysis, imaging, and clinical examinations—all of which act as early-warning systems—and have the power to further swing the numbers in your favor.
As inconvenient as all the above might be, take it all in stride. Just think of it like going to the dentist, doing your taxes, or doing regular maintenance on your car.
By the way, I (Frank) am talking because I know. I’ve been there and still am here because I’m armed with knowledge and a plan that works.
I encourage you all to dig deep and do the same. Do it for you, for those you love, and for those who love you back.
back to… Table of Contents
My Chronic Lymphocytic Leukemia
“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).
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).
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.
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.
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?
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.
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.
“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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.
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.
back to… Table of Contents
My Prostate Cancer
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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
back to… Table of Contents
Cancer Traumas
Trials and Tribulations
Some pains hurt just a little; others make you wish you were dead…
Some wounds heal quickly; others fester and scar you forever.
Some medicines make you strong; others make you weak.
Some burdens are easy to carry; others bring you to your knees.
Some worries are easy to forget; others nag you 24/7.
Some procedures take just a minute; others land you in the hospital for days.
Some traumas come and go; others come and stay.
Some things can wait–a minute, an hour, a day, a week, a month or two; others need done NOW.
Some doctor’s words put you at ease; others drive your stress off the charts.
Some numbers fill you with you hope; others crush you with despair.
It’s almost never a roller coaster. More like demolition derby. Sometimes you see the crash coming. Sometimes you don’t. Sometimes like being stabbed, shocked, suffocated, or crushed–sometimes all at the same time. Other times like being pushed off a roof–totally helpless–nothing you can do but hope someone catches you. And you’re always playing Russian roulette–in super slow motion, typically with more guns than one.
(I wish I was a better writer–because none of these metaphors do the ordeal justice.)
Procedures
Submitted for your perusal: a partial list of painful, stressful, expensive, and time consuming medical procedures…
… imposed by Lynch Syndrome, colon cancer, Muire-Torre Syndrome, various skin cancers, leukemia, and prostate cancer or by the treatments, side effects, and side effect mitigations for all the above.
Some fall into the “one and done” category. Alas, many fall into the “frequent flyer” category.
Peripheral Blood Draws (hundreds, frequent, ongoing).
Hemicolectomy Surgery (one and done).
Skin biopsies (hundreds, of almost every body part, ongoing).
Skin Cancer Surgeries (dozens, frequent, ongoing).
Colonoscopies (dozens, annually at least, ongoing).
Upper Endoscopies (dozens, annually at least, ongoing).
Umbilical Hernia Surgery (complication from Hemicolectomy).
Bilateral Nephrostomy (and several horrifying complications).
Chest Port Installation.
Imaging with Radioactive Tracers (dozens, ongoing).
Pelvic bone marrow biopsy.
Upper arm bone marrow biopsy.
Prostate biopsy.
Liver biopsy.
Bladder biopsy.
Cystoscopies (many, ongoing).
Foley Catheterization.
Radiation Treatments (10, hopefully finished).
Chemotherapy infusions (6, halted because it didn’t work)
Immunotherapy infusions (62 and counting, every three weeks, ongoing as long as it keeps working).
Physical Distress
Submitted for your perusal: a partial list of physical traumas…
… inflicted by Lynch Syndrome, colon cancer, Muire-Torre Syndrome, various skin cancers, leukemia, and prostate cancer or by the treatments, side effects, and side effect mitigations for all the above.
Note: Some fall into the “came and went” category. Many are in the “came and stayed” category.
- Never feeling normal again.
- Feeling sick all the time.
- Debilitating fatigue.
- Skin lesions.
- Bruises, cuts, and scratches that refuse to heal.
- Alarming weight loss.
- Alarming weight gain.
- Uncomfortable and embarrassing hot flashes.
- Soaking night sweats that ruin your sleep.
- Unstoppable chills that come on suddenly and can last anywhere from a few minutes to days to weeks.
- Grossly enlarged lymph nodes… so huge that they disrupt the function of your legs, lungs, stomach, intestines, kidneys, and ureters.
- Feeling like your teeth are going to fall out.
- 100% loss of sex drive.
- Man boobs.
- Loss of strength and muscle mass, so severe than it takes everything you have just to get up and walk across the room.
- Blood in your urine.
- Acid Reflux.
- Aspiration of stomach acid into your sinuses and lungs.
- Nausea.
- Strained defecation and evacuation that does not feel complete and “satisfying”.
- Constipation.
- Diarrhea.
- Vomiting.
- Inability to control your body temperature.
- Cold, sweaty hands and feet.
- Nasty metallic taste in your mouth, so severe that you stop eating.
- Lost appetite, so much so that the mere thought of eating disgusts you.
- Headaches.
- Peripheral edema.
- Neuropathy.
- Permanent numbness in your hands and fingers (a typical side effect of chemotherapy).
- Cracked teeth (due to unconscious jaw clenching and grinding).
- Painful infections that take time to treat.
- Hair loss.
- Nosebleeds.
- Cracked fingernails that never heal.
- Anaphylaxis.
- Brain fog.
- Memory loss for names, simple words (even your own phone number and social security number.
- Painful, burning urination.
- Blinds spots in your eyes.
- Excruciating back pain due to hydronephrosis.
- Opiate withdrawal: shivering, nausea, restlessness, icky guts, diarrhea, full body cramps… as if you’re being invaded by space aliens.
- Full body bone pain. As if your entire skeleton is going to crack.
- Umbilical Hernia (a complication from having half your colon removed)
- Alarmingly swollen, painful leg, so much so that you need a cane just to take a few steps.
- Random pains that come and go (too many to list).
- Random unpleasant sensations in your body that are impossible to describe.
- Inability to sleep because you’re in so much pain.
Emotional Distress
Submitted for your perusal: a partial list of emotional traumas…
… piled on top of the many physical traumas already inflicted by Lynch Syndrome, colon cancer, Muire-Torre Syndrome, various skin cancers, leukemia, and prostate cancer or by the treatments, side effects, and side effect mitigation efforts for all the above.
Note: Some fall into the “one and done” category. Alas, most do not.
- The ever-present threat of recurrence.
- The dark cloud of cancer progression, not because it might happen, but because it already has happened… many times over.
- The ever-present threat of new cancers developing.
- The ever-present threat of life-threatening side effects.
- Not knowing for months if a treatment is going to be effective.
- The anxiety of waiting for test results.
- False negatives.
- False positives.
- Not knowing what is causing a particular pain.
- Not knowing enough about the diagnosis and staging to make an informed decision.
- Rumination about the best and worst that can happen.
- The dread of knowing that something is going to hurt physically.
- The dread of knowing that certain side effects are virtually guaranteed to occur.
- The dread of all that precious time things will take to heal.
- Fear of looking into the toilet every time you pee because you might see blood in your urine.
- Fear of looking in the mirror because you might notice a skin lesion you didn’t notice before.
- The jolt to your system when you notice an alarming symptom you did not notice just one heartbeat before.
- The stress of doing triage on yourself when a new and alarming symptom pops up.
- Cancer nightmares that interrupt even the temporary escape of sleep.
- The never-ending stress of having multiple time bombs ticking away inside you and not knowing how much time is left on the clock.
- The whiplash between hope and despair as you revise your life expectancy up and down and down and up and up and down and down and up and down.
- The stress of deciding who, what, when, how, and if to tell family and friends about what’s going on with you—and preparing them for the worst.
- Grief for all that precious time and energy lost forever… time you’d rather spend on living, not being a cancer patient.
- Doing all this while immunocompromised in the midst of a pandemic and having to deal with anti-vaxxers and anti-maskers.
- Regret for anything you should have done differently… not just with respect to your cancer journey, but in your life in general.
- The utter loneliness of it all–largely because you don’t want to be a burden on anyone.
“Mistakes”
Submitted for your perusal: a partial list of aggravations and traumas inflicted by “imperfections” in the healthcare system…
… piled on top of the physical and emotional distress already inflicted by the disease and treatments.
Note: Some fall in the “one off” category (perhaps understandable and forgivable given the system’s complexity and human imperfection). Alas, many are systemic and absolutely avoidable.
Botched blood samples.
Lost blood samples.
Incorrect tests ordered.
Correct tests never ordered.
Correct test ordered but not transmitted properly.
Appointments cancelled, postponed, rescheduled, or important appointments never scheduled at all.
Being stood up.
Telephone bingo machines.
Playing telephone tag.
Hours on the phone dealing with an administrative screw up.
Hours in a clinic dealing with an administrative screw up.
Being put on interminable hold.
Being transferred like a hot potato.
Being disconnected and having to start all over again.
The runaround from bureaucrats.
The “not my job” attitude.
Prescription foul ups.
Specialty pharmacies bought, sold, renamed, and phone numbers changed.
Having to fill out another poorly-designed medical intake and medical history form—again—and wondering if anyone even reads it.
The inability to reach a doctor because they’re hidden behind a phalanx of bureaucracy.
Going through extra days and weeks of unnecessary worry because somebody who was supposed to call you didn’t.
Time and energy spent trying to find a general practitioner who is accepting new patients and who is “within network”.
Being dropped by your GP because they’ve moved on to a different clinic or health care system.
Hospital systems that “fall” out of network without warning, yet continue to provide service as if you’re still covered, leaving you stuck with the bill.
Being treated like a “condition”, not like a human being.
Insensitive remarks from medical professionals.
Having medically-necessary imaging denied by your insurance company.
Having medically-necessary lab work denied by your insurance company.
Being threatened by a debt collection agency for medical bills you didn’t even know existed.
Being undiagnosed and misdiagnosed.
Being over-tested and under-tested.
Being undermedicated and overmedicated.
Inadequate anesthesia that introduces you to pain levels greater that ten.
Jolting surprises during recovery that should have not been surprises at all and were in retrospect no need for alarm.
Medical professionals who have no business being medical professionals (for all kinds of reasons that will remain unspoken here)
Although there are many things wrong with the healthcare system, there are also lots of things that are RIGHT. Frank looks forward to celebrating such in a future post.
Sleep Deprivation
Gone are the days when you might enjoy a good night’s sleep and awake totally refreshed and ready to take on the world…
Gone. Forever.
For all kinds of reasons: Night sweats, night chills, cancer pain, the bite and burn of a surgical wound, infection, teeth grinding, filthy cumbersome tubes penetrating your back, meds that make you wired, skin rendered raw by radiation, a leaky urine bag, hydronephrosis, lymphedema, being catheterized, painfully cracked teeth.
Of course, sometimes you toss and turn for the same reasons healthy people do: you ate too much or too late, one drink too many, too much caffeine, drank too much water and have to pee, didn’t drink enough water, got leg cramps, and woke up thirsty. You have nightmares, too, the kind that healthy people have… but now you can add cancer nightmares to the list.
Even when you do sleep, it doesn’t matter how much. You always wake up feeling like you haven’t slept a wink. Like you could sleep for a year and never catch up.
So you lean on those precious cups of coffee to get going, but even that caffeine boost has its limits and results in a crash by mid-afternoon.
Half the time you’re awake, you’re not really “up”.
By early afternoon, you’re fighting the urge to lay your head down. No matter how delicious a nap might be, sleeping away what little time and energy you have left feels like such a waste.
So you think you’ll just shut your eyes for a minute. Alas, you lose track of how many of those minutes have turned to hours until you’re shocked awake yet again still feeling totally exhausted.
You lose track of how many times you’ve drifted off in front of the TV, unable to muster enough energy to even qualify as a couch potato. And then you are forced awake because your left arm’s asleep under your contorted body.
Every time your body succumbs to an irresistible nap, your entire sleep schedule is upended.
But sleep cannot be skipped. Every extra waking hour you fight for today must be paid for in extra rest tomorrow.
You know what kind of day you’re going to have by the quality of sleep the night before. That quality is almost never good. The best you can hope for is just ok… with predictable effects on your energy, mood, and enthusiasm.
Sleep does come, but typically in unpredictable and inconvenient fragments. You lose track of how many times you wake up having no idea what time it is, except for the light or darkness in the window. And when it’s not quite dark and not quite light, you don’t know if it’s just past sunset or just before sunrise. You check the clock and can’t believe what time it is.
Getting up can be quite the process. Like crossing a semi-conscious no man’s land. Unable to go back to sleep, but barely able to open your eyes. You can drift back and forth between nightmares, daydreams, hallucinations, and thinking you might be awake. Maybe time to get up. Maybe not. It’s not uncommon to spend hours each day in this groggy, meaningless twilight zone where you’re getting no sleep and getting nothing done.
Sometimes sleep is a welcome guest. Alas, sometimes it imposes itself no matter how hard you try to fight against it.
You lose track of how many times you’ve been shocked awake by choking on that tasteless blob of gum you chewed to death hours ago.
Even on your good days, the fatigue is always there… eroding the quality of what little time and energy you have left.
And you don’t know if you’re exhausted because you haven’t slept well. Or because of the Leukemia… or the prostate cancer… or the colon cancer. Or because you’re chemically castrated… or because of the meds you’re taking… or the meds for dealing with the side effects… or the radiation… or because you’re not eating right or properly hydrated… or because you’re not exercising enough… or because you’re exercise too much and pushing too hard… or because your organs are slowly failing. Maybe it’s long Covid which you’ve now survived twice. Who knows?
Not to mention the stress, depression, and anxiety of it all that never goes away.
And so the time and energy you need to advance your projects, enjoy simple pleasures, and enjoy quality time with friends are regular casualties.
Not Knowing
Not knowing is a particularly vicious way that cancer tortures you…
Such “not knowing” takes many forms…
Not knowing what your diagnosis is.
Not knowing what a blood test, urine sample, biopsy, PET scan, colonoscopy, cystoscopy, or surgery will find–especially when you already know something’s not right.
Not knowing all those things you wish the doctor explained to you until after you’ve already suffered needlessly.
Not knowing the questions you should have asked while you were in the exam room.
Not knowing what’s causing your pain or other alarming symptom.
Not knowing what to do when pain or other alarming symptom sends your stress level through the roof.
Not knowing what the treatment options are.
Not knowing how painful a procedure will be.
Not knowing if the insurance company is going to pay for it.
Not knowing how long and painful a treatment will be.
Not knowing if a treatment is going to work.
Not knowing what happens if a treatment doesn’t work.
Not knowing what the side effects are.
Not knowing how severe the side effects will be.
Not knowing what to do if you experience a side effect.
Not knowing how long and painful the recovery will be.
Not knowing if a plan B even exists.
Not knowing if your symptoms are caused by your known cancer, a yet undiscovered cancer, or the treatments.
Not knowing what caused your disease.
Not knowing how advanced the cancer is and where the cancer has spread.
No knowing how treatable the cancer is.
Not knowing how disfiguring a surgery will be.
Not knowing how long and painful the recovery will be.
Not knowing how and when cancer is going to make your life unlivable.
Not knowing how, when, whom, if you’ll say goodbye when the time comes.
Not just one unknown. Dozens of unknowns. Sometimes all at once. Day after day, week after week, month after month, year after year.
And all it takes is one unknown to steal your joy for the day.
Chores & Stuff
The world doesn’t conveniently stop spinning so you can vomit, get a PET scan, do chemo, or have radiation and surgery…
You still need to pay your bills, get groceries, take out the garbage, wash the dishes, file your taxes, fix a flat tire, replace that leaky faucet, and get a root canal… to name but a few.
You’re already at the end of your rope with cancer–exhausted, emaciated, emasculated–when your house key snaps off in the dark and bitter cold.
F&ck.
Cancer Pain More than Hurts
Cancer pain does so much more than hurt…
Cancer pain debilitates and isolates.
It prevents you from taking care of yourself.
It prevents you from sleeping.
It prevents you from eating.
It prevents you from staying hydrated.
It prevents you from exercising.
It prevents you from doing simple, necessary chores.
It prevents you from running important errands.
It prevents you from responding promptly and honestly to family and friends checking in to see how you’re doing.
Cancer pain prevents you from doing the very things you’re fighting to live for–like loving your kids, working, playing, traveling, volunteering, connecting with nature, or writing that book you’ve been threatening to write for decades.
Welcome to the Pharmacy
One man’s list of medications and questions that must be answered in order to treat his cancer and manage his pain, symptoms, and side effects…
Important: None of this should be taken as medical advice… for at least two big reasons: 1) My case is unique and so is yours, 2) New treatments and medicines are being developed and approved all the time.
Special Note from Frank: The fact that I am still alive (as of April 4, 2025)–and doing more than just surviving–is a testament to the marvels of medical science. (and of course the small circle of family, friends, and dedicated medical professionals I depend on in so many ways.)
Some of the medicines I’m taking are nothing short of miracle drugs. Without them–many only recently approved by the FDA–I’d be long gone… or worse. With them, I’m able to live with enough energy and purpose to make every day worth fighting for.
Cancer Medication Types
Effective cancer treatment requires so much more than the medicines used to treat your cancer directly.
The bad news is that dozens of other medicines are also required to treat a long list of indirect effects of the disease and your treatment.
The good news is that many highly effective medicines are available for treating these effects–for relieving pain, preventing diarrhea, reducing painful spasms, preventing organ failure as a direct effect of the cancer, preventing organ failure as a side effect of treatment, reducing inflammation as a direct effect of the cancer, reducing nausea, preventing vomiting, stimulating appetite, treating side of effects of the medications used to treat the side effects of the cancer treatment, helping with sleep, treating depression, treating opportunistic infections, managing discomfort after surgeries and radiation treatments.
[insert pic of stack of data sheets and pill bottles?]
Things You Need to Know
Learning about your medicines and how to take them feels quite daunting at first. You’re already beyond stressed and filled with anxiety and now you’re faced with questions you never thought you’d have to ask…
- What time of day to take the meds?
- Do I or can I take them with or without food?
- Can I take at the same time as my many other medicines?
- What foods are not allowed?
- What are the possible contraindications?
- What if I miss a dose?
- What are the possible interactions with all the other medications I’m taking?
- How long will it take to work?
- What are the possible side effects?
- How long before any side effects occur?
- What to do if I have side effects?
Discovering what works for YOU in terms of your medications list, dosages, schedules, and how to use them is a process unique to YOU and requires crisp communication with your doctors, a bit of experimentation, and honesty about your symptoms. Your doctors really do want to help. Help them to help YOU.
There’s also a bit to learn about how to manage and pay for all this by working with specialty pharmacies and your health insurance company (a topic for another day).
List of Medications
Presented in alphabetical order with link to more detailed and up-to-date information…
Acalabrutinib (Calquence). To treat Chronic Lymphocytic Leukemia.
Allopurinol. To prevent Tumor Lysis Syndrome (high levels of uric acid that builds up in the blood as tumors break down.
Amoxicillin. Penicillin antibiotic taken as needed to prevent infection of my chest port due to even routine dental exams.
Aspirin. For colon cancer prevention.
Acetaminophen. For aches pains and chills.
Vitamin D. General immune system booster.
Bicalutamide (Casodex). To treat advanced Prostate cancer by inhibiting the effects of male hormones.
Clindamycin. Topical Antibiotic to prevent infection of skin cancer surgical wound.
Covid-19 Vaccines (Moderna). Staying vaccinated because you’re immunosuppressed.
Dexamethasone. Corticosteroid for something I don’t even remember.
Dronabinol. Synthetic cannabinoid for stimulating appetite (no longer needed)
Enzalutamide (Xtandi). Treats advanced Prostate cancer by inhibiting testosterone production. Androgen Deprivation Therapy (ADT).
Flu Vaccines. Staying vaccinated because you’re immunosuppressed. (annual)
Gabapentin. Originally taken for nerve pain, but discovered it also helped reduce the frequency and severity of the hot flashes due to AGT.
Hyoscyamine. For [horrific] bladder spasms during nephrostomy ureter stents (did not help me at all).
Lisinopril. For treating high blood pressure while my kidneys were not functioning because my ureter were pinched off by enlarged lymph nodes.
Lupron (Leuprolide). To inhibit testosterone production, given by injection ent diarrhea, to prevent painful spasms.
Marinol. A synthetic cannabinoid for preventing nausea and stimulating appetite. (No apparent effect)
Miralax. Over the counter laxative to counter opiod-induced constipation.
Mirtazapine. Nausea Suppression, Appetite Stimulant, Sleep Aid
MS Contin (Morphine). For ever-present, long-term cancer pain (I don’t believe I could live without it).
Olanzapine (Zyprexa). Anti-nausea.
Ondansetron (Zofran). To prevent chemotherapy induced nausea.
Oxycodone. Fast acting opioid for breakthrough cancer pain, as needed.
Pegfilgrastim (Neulasta). Delivered by wearable device that automatically injects the day after chemo in order to boost white blood cell production and therefor boost your immune system.
Pembrolizumab (Keytruda). Immunotherapy by infusion every three weeks. For Colon Cancer, Prostate Cancer.
Prednisone. Corticosteroid, Anti-inflammatory to treat grossly enlarged lymph nodes. Also an energy booster to help me get through the chemo and radiation.
Prochlorperazine. Anti-nausea.
Respiratory Syncytial Virus (RSV) Vaccine (Arexvy). Staying vaccinated because you’re immunosuppressed.
Shingrix Shingles Vaccine. To prevent herpes zoster. Staying vaccinated because you’re immunosuppressed.
Sulfamethoxazole/Trimethoprim. Antibiotic for a painful UTI I developed during catheterization
Tamsulosin. Alpha-blocker To treat enlarged Prostate due to cancer and cancer surgery so that I can urinate normally.
Taxotere (Docetaxel). Traditional hard chemotherapy by infusion every two weeks for treating advanced prostate cancer.
Venlafaxine (Effexor). Anti-depressant and Hot Flash Mitigation (did no work for me)
Zoledronic Acid (Zometa). By infusion… for general bone health and to prevent osteopororis.
The Best Case / Worst Case Game
Cancer Trauma: I gave up hoping for the best and bracing for the worst a long time ago…
… because bracing for the worst is exhausting.
… because even hoping for the best take precious time and energy–things that are already in short supply.
… because I’ve been wrong so many times about what the best and worst actually turned out to be.
Although there have been occasions when the diagnosis, test result, surgery, recovery, complication, treatment, or side effect was not as bad as I feared, there have been many others when the outcome was worse—far worse—than I ever dreamed possible.
How am I supposed to know in advance when to be more hopeful?
And how am I NOT supposed to ruminate about the worst that can happen when my experience has trained me not just to fear the worst, but to fear beyond the worst?
Stress Responses
Of course I’m anxious. Of course I’m depressed. Of course I’m stressed…
As I write these words, I’m chewing a stick of gum to death. Afraid to stop chewing lest I give my brain a chance to go somewhere I don’t want it to go.
My jaw and teeth hurt because I grind them in my sleep. I have a cracked tooth that bugs me now and then. I’d get it replaced if I had more hope for longevity.
I talk to myself. A lot. Sometimes I don’t even realize I’m doing it. I talk to myself so I don’t forget what I’m in the middle of doing. In fact, I’m doing it right now as I struggle to type these words.
When I’m alone, I sometimes talk to imaginary people sitting next to me. To be clear, I’m not hallucinating. I know no one is there. I just pretend to talk to someone–someone I wish existed so I had someone to talk to.
I’ve lost track of how many times I’ve fallen asleep in front of the TV when I wasn’t even watching.
I sometimes catch myself staring through a solid wall or into empty space.
I routinely fail to find a simple word to complete a simple sentence. So people have to finish my sentences for me. (By the way, it’s ok if you do so. I’m not insulted.)
I lose track of what I’m doing right in the middle of doing it. In fact, I did it just a moment ago when I attempted to cut and paste some text from this very document. Poof! Totally forgot what I was trying do. Happens every day.
I’ve lost track of how many times I’ve checked the clock, only to immediately forget what time it is. I can do this three or four times in the span of half a minute.
I easily lose my train of thought in mid-conversation. Maybe it’s long Covid or just age, but does it really matter what the reason is? It’s still upsetting and frustrating.
I’ve chewed a thousand sticks of gum to death over the years. Thousands of them. Often falling asleep and waking up hours later still chewing on autopilot. More than once, I’ve been shocked awake by inhaling or choking on the tasteless blob.
Hypnic jerks have shocked me awake dozens of times—heart pounding in terror as I try to catch myself from falling into a huge void.
I have cancer nightmares. About horrific ways to die… and about horrific ways to live. I don’t want to say anything more about them right now. I just don’t.
It doesn’t happen often, but I sometimes drain a whole bottle of wine. Typically when I’m scatterbrained, exhausted, yet unable to sleep and unable to muster the energy and focus I need to do anything useful. It’s no lie that alcohol relaxes me and stimulates my appetite. Good thing I’m not an alcoholic or I’d be in serious trouble.
I have flashbacks. Most often to a few particularly traumatic experiences that have nothing to do with cancer. Uncontrolled explosions of sobbing that overcome my entire being—often accompanied by dropping a few f-bombs. Fortunately these episodes only last a few minutes. But those horrific memories are always lurking just below the surface. And it doesn’t take much to trigger them. In fact, I had one right just now in middle of writing about this. F&ck.
back to… Table of Contents
My Life Expectancy
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.
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.
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.
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.
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?
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.
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.
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.
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.
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?
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.
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.
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.
back to… Table of Contents
Death with Dignity
Exit Plan
I’ve lost track of how many times I wish I had a magic switch I could just flip to the “off” position…
Click.
No more pain, fatigue, or weakness.
No more regrets, worries, fears, or anxieties.
No more needle sticks or IVs.
No more ultrasounds, X-rays, CT scans, MRIs, bone scans, and PET scans.
No more surgeries or invasive procedures.
No more wounds or sutures.
No more infections or antibiotics.
No more EKGs, blood draws, or urine samples.
No more infusions or radiation.
No more false negatives or false positives.
No more biopsies.
No more colonoscopies, EGDs, or cystoscopies.
No more waiting, waiting, and more waiting.
No more mindless and heartless bureaucracy.
No more telephone tag.
No more medical bills.
No more cracked teeth.
No more hard decisions.
No more having to file an effing tax return.
Of course, this magic switch would provide instant and totally painless relief for my survivors as well—leaving them all without grief, guilt, regrets—and with nothing but happy memories of me.
Such a switch does not exist, of course.
If such a switch did exist, I would have flipped it on many occasions—without hesitation—and without even a hint of sadness, guilt, anger, doubt, or fear.
The “S” Word
My exit plan does not include the “S” word…
… for at least five reasons:
- I’d never put anyone through the anguish of wondering why Frank isn’t answering his phone, texts, emails, or doorbell.
- I’d never put anyone in the position of having to deal with the messy aftermath.
- I’d never put anyone in the position of feeling guilty for not seeing it coming and for not doing something about it.
- I’m afraid I might botch the job and leave myself in even worse shape than I was before.
- I’m afraid I might botch the job and become so incapacitated that I’m unable to communicate and control what happens to my body.
Depression
I have never considered flipping that mythical magic switch because I was depressed…
I have considered flipping it…
… because I was in horrific pain.
… because I was emaciated and puking my guts out.
… because I was so weak and exhausted that I could barely lift my head off the pillow for days on end.
… because I was so weak and exhausted that I didn’t take a shower for weeks.
… because I was so weak and exhausted that all I could stomach was a single Ensure shake choked down once a day for weeks.
… because I was terrified of suffocating.
… because I was so weak I couldn’t open a jar of spaghetti sauce. (I just laid down and went without eating for yet another day)
… because I felt totally emasculated.
… because I felt totally useless.
… because the ability to do the things that gave my life meaning were stripped away from me.
… because I feared being incapacitated and intubated.
… because I feared being put on life support against my wishes.
… because I didn’t want to be a burden on anyone.
… because I saw no dignity in pointless suffering.
I repeat: I have never entertained flipping that mythical magic switch because I was depressed.
Bodily Autonomy
The morality and ethics of dying with dignity are perfectly simple, rational, and humane…
Nobody else has the right to dictate what I can or cannot do to my own body. I have the inalienable right and freedom to choose as I please—as long as it does not infringe upon the freedom, health, or safety of anyone else.
Likewise, nobody has the right to dictate what another knowledgeable, skilled, and compassionate human being can do to help me peacefully and painlessly enter the eternal sleep—at a time, place, and manner of my choosing—and with the same care and love that any decent person would bestow upon a beloved, suffering animal.
Thank You, Elizabeth Whitefield
June 18, 2021–the day an enormous weight was lifted from my shoulders…
… the day the New Mexico “End-of-Life Options Act” went into effect.
Prior to that date, I did not live in a Death with Dignity State.
Prior to that date, deciding where to live was a source of extreme stress and a matter of utmost urgency.
Prior to that date, the specter of unenviable alternative exit plans followed me everywhere.
It’s impossible to describe the magnitude of the relief and comfort I derive from knowing I now have the option to die live with dignity when the time comes.
Thank you, Elizabeth Whitefield.
And thank you Deborah Armstrong, Dayan Hochman-Vigil, Liz Stefanics, Bill O’Neill, Michelle Lujan Grisham, and countless other heroes who scored this major victory for human decency, compassion, and kindness.
Medical Aid in Dying Law
For the small but growing list of states that have Medical Aid in Dying (MAID) laws in place…
… the rights, procedures, and protections for both the patient and their health care providers are clearly and sufficiently defined and delineated.
For example, in order to quality for life-ending medication in the state of New Mexico (under the Elizabeth Whitefield End-of-Life Options Act), one must be:
- A New Mexico resident.
- At least 18 years of age.
- Diagnosed with a condition or illness that is incurable and irreversible and likely to cause death within 6 months.
- Mentally capable of making and communicating an informed decision.
- Physically capable of self-administering the life-ending medication.
Once the above criteria are met and a prescription for aid-in-dying medication is written, the prescription may be filled only after a forty-eight-hour wait period.
Importantly, participation is always voluntary and based on informed consent. The patient can opt out at any time and no healthcare provider is ever required to participate.
To my knowledge, each the medical aid in dying law in each death with dignity state follows the same blueprint.
I encourage you to download and read the New Mexico Aid-in-Dying Legislation for yourself (6 minute read): Elizabeth Whitefield End-of-Life Options Act.
I’ve read every word and am perfectly at ease knowing that my rights will be protected, that I will never lose the power of informed consent, that my healthcare providers will be adequately trained, that these compassionate healthcare providers would be protected by law, and that all the procedures required will ensure the integrity of all the above.
Suicide Prevention
I don’t want to die. I want to LIVE…
In other words, I’m not suicidal.
I’ve never been suicidal.
I’ve never wanted to die.
I’ve always wanted to LIVE.
And now thanks to having the option of medical aid in dying, I don’t anticipate ever becoming suicidal.
Right to Life
The right to end my own life peacefully and painlessly is not about the right to die but about the right to LIVE…
The right to live without pain.
The right to live with purpose.
The right to live without being a burden on others.
The right to live knowing that I am not consuming financial and human resources better spent on serving others who could truly benefit from them.
The right to live knowing that my estate is not being squandered on life support or palliative care that merely prolongs suffering and postpones the inevitable–knowing that my estate will instead be reinvested in causes I care about.
Palliative Care
It’s easy to find stories suggesting that palliative and hospice care…
… do an adequate job making patients “comfortable” and allowing them to “pass peacefully”.
Alas, horror stories are easy to find as well.
Like most things in life, the quality of your medical care depends. It depends on where you live, who your doctors and nurses are, the decency of your health insurance, and a host of socioeconomic, political, and religious factors.
But even if palliative and hospice care really did make me “comfortable” and allow me to “pass in peace”, so what?
Because physical pain avoidance isn’t the only reason to choose medical aid in dying.
Because no matter how “comfortable” and “peaceful” the process might be for me, I don’t want my family and friends to watch me slowly wither away. I want them to remember Frankie at his most vital, stubborn, and courageous best.
Because no matter how “comfortable” and “peaceful” the process might be for me, I don’t want to disrupt anyone’s lives being on “death watch”–stressing over how many more weeks, days, hours, and minutes Frankie has left.
Because maybe I don’t want to outlive my usefulness–no matter how “comfortable” and “peaceful” that useless existence might be.
Advance Directive
I don’t know what the future holds…
I don’t know what course my cancers will take.
I don’t know what complications and medical crises await me.
I don’t know how fast things will progress.
I don’t know if I’ll lose the mental capacity to make and communicate an informed decision.
I don’t know if I’ll lose the physical capacity to self-administer the life-ending medication.
And, even with the option of medical aid in dying, I still fear being conscious and losing control of what happens to me.
Should I lose such capacity, the best I can do (legally) is to have an Advance Directive (sometimes called a Living Will) that clearly communicates my wishes and grants power of attorney to one or more trusted agents who fully understand and support those wishes.
In a nutshell those wishes are: Do not prolong life. Sedate me. Keep me pain free. Withdraw all food and water. Do not resuscitate.
Please just let me go in peace.
The Case for Exceptions to the Law
In light of the medical ethics questions raised and resistance of society at large to face the realities of death and dying with honesty and maturity…
… the guardrails and requirements defined by current medical aid in dying laws–namely age (at least 18 years), life expectancy (less than 6 months), wait time (at least 48 hours), and mental & physical capacity–may not be unreasonable baselines, but it seems to me that there should be a provision for making exceptions in exceptional cases.
Maybe someday.
Paying It Forward
I can never repay the enormously comforting gifts of choice, autonomy, compassion, and dignity I’ve received from so many empathetic, hard-working heroes–doctors, nurses, researchers, engineers, legislators, lawyers, and patients–who’ve made my right to die with dignity an option.
But I’m paying it forward by speaking openly and honestly about the subject and by being a sustaining donor to DeathWithDignity.org (which also figures significantly in my estate planning)…
… in the hope that the basic human right to live and die with dignity might become an option for everyone someday.
back to… Table of Contents
Getting My Affairs in Order
Why it Matters
Guess what’s more stressful than the time-consuming, aggravating, gut-wrenching process of getting my affairs in order?
That’s right…
The anxiety-laden and guilt-ridden stress of NOT having my affairs in order.
Anxiety-laden for at least two reasons…
1. Because I risk losing control of what happens to my still living body should I lose the capacity to speak and act on my own behalf.
2. Because without a will or trust, the disposition of my estate is considered “intestate” and automatically goes into “probate” to be distributed according to the laws in my state. Be advised: I may not be happy with who inherits my wealth when I’m gone.
And guilt-ridden for at least three reasons…
1. Because every unanswered question regarding my healthcare and final wishes may come to burden my family and friends with the most difficult decisions of their entire lives.
2. Because not leaving crystal clear instructions regarding the disposition of my estate saddles my survivors with the potentially expensive, lengthy, aggravating, and contentious process of probate.
3. Because not telling my executors where to find important personal effects and documents will overwhelm my loved ones with the aggravating and emotionally exhausting of trying to figure it all out after I’m gone.
In summary, getting my affairs was more than an ethical, responsible, considerate, and generous thing to do.
It was an act of love.
Wants & Wishes
Here, for your consideration, is a summary of one man’s final wishes, end-of-life plans, and legal arrangements…
* Nothing here should be interpreted as either general or specific legal advice. Neither should anything here be taken as an endorsement or rejection of any set of very personal choices.
- I don’t want to outlive my usefulness.
- I don’t want to outlive my ability to enjoy simple pleasures.
- I don’t want to linger and wither away.
- I don’t want anybody to see me linger and wither away.
- I want my family and friends to remember me full of life and at my most purposeful and courageous best.
- Near the end, I don’t want to be a burden on anyone’s time, health, energy, and emotions.
- Should I have the capacity to speak and act on my own behalf, I want (and fortunately have) the option to die with dignity.
- Should I lose the capacity to speak and act on my own behalf, I want to be kept comfortable and to have no measures taken to prolong my life.
- I don’t want to squander any of my estate keeping me alive for no other purpose than to prolong suffering and postpone the inevitable.
- I don’t want to be a burden on anyone’s time, health, energy, and emotions after the fact.
- I don’t want to leave any of my survivors with work to do–except for making a handful of unavoidable phone calls.
- I don’t want those who care about me to see me dead.
- I don’t want anyone to have to dress up and waste any precious heartbeats going to a funeral or memorial service. Neither do I want anyone to be burdened with organizing any such thing. And so, no viewing. No vigil. No wake. No obituary. No ceremony.
- I don’t want to have my embalmed, powdered, well-dressed corpse put into some fancy box and deposited in a human waste landfill–no matter how peaceful and lovely the grounds may be. Neither do I want my name etched on a granite slab along with some clever phrase.
- I want to be cremated… immediately. And, per the expressed wishes of certain of my survivors (based on some heavy conversations), my cremains will be distributed to them to do what they will at a time, place, and manner of their choosing.
- I want 100% of my estate to go to causes that align with my most deeply-held values.
Special Note about the status of my arrangements…
(1) I’ve already communicated the above (both verbally and in writing) to the small circle of family, friends, and authorities concerned.
(2) I’ve identified trusted agents who I respect, who share my values, and who have promised to honor my wishes without hesitation–wishes that are clearly defined in a living will and advance medical care directive.
(3) I’ve already identified and made contact with local hospice organizations that support medical aid in dying.
(4) I’ve already such arrangements by a combination of a living trust and payable on death beneficiary designations as appropriate.
(5) I’ve contracted with a fiduciary (a professional executor) so that none of my survivors will be burdened with managing my estate.
(6) I’ve already contracted with and pre-paid a mortuary to handle all the above, including shipping of my cremains to my survivors who requested them.
A Hell of a Thing
It’s a hell of a thing to decide how you’d like to end it all when life becomes unlivable and unbearable…
Stop all treatment?
Allow some treatment?
Allow nature to take its course?
Fight to prolong life as long as possible?
Enter hospice?
Die at home or in a facility?
Unalive myself?
Take advantage of medical aid in dying?
(Read my thoughts and feelings about all the above in Death with Dignity)
It’s a hell of a thing to decide who should be first, second, and third to be notified of your death: names and contact information for family, friends, neighbors, doctors, undertakers, and executors.
A hell of a thing to consider how much ceremony (and burden on your survivors) should be involved after your passing: Traditional open casket funeral? Celebration of life? Church Service? Wild party? Nothing?
A hell of a thing to decide the disposition of your lifeless body for eternity… Organ donation? Medical school cadaver? Medical research? Burial? Cremation? Composting? Other?
It’s a hell of a thing to compile and share all your personal information: legal name, date and place of birth, social security number, legal residence, telephone number(s), marital status, dependents, Medicare/Medicaid information, citizenship, military service, veteran’s benefits, employment history, education records, voter registration, passport, club, union, and organization memberships.
A hell of a thing to compile, document, and share your financial life as necessary: savings and checking accounts, credit and debit cards, brokerage accounts, pensions, 401ks, annuities, stocks, bonds, real estate, business interests, outstanding debts, mortgages, liens, life insurance, health insurance, direct deposits, social security income, sustaining charitable donations.
It’s a hell of a thing to decide who you trust and who will be entrusted with managing your financial affairs should you lose the capacity to speak and act on your own behalf.
A hell of a thing to decide who you trust and who will be entrusted with honoring your final wishes should you lose the capacity to speak and act on your own behalf.
A hell of thing to decide how to care for and who will care for your dependents, children, and pets.
A hell of a thing to review your digital life: personal computers, smart phones, websites and social media, email addresses, and password access to above. To decide what’s worth preserving for posterity. What should be deleted. What should remain private. What to share with loved ones and the wider world when you’re gone.
It’s a hell of a thing… as necessary as it is vulgar… to decide what will become of your money and material possessions–so dispassionately called your “estate”–when you’re gone. A hell of thing to make it all legal.
A hell of thing to compile all the necessary documents. To decide where to store them, how to store them. To decide who to inform of their existence, significance, and location. Who will be granted access–by password, combination, or key.
A hell of a thing to communicate all the above to your loved ones and legal representatives as appropriate—first during the planning stages, second after your decisions have been made, and third after all legal arrangements are complete. A hell of a thing to decide WHAT to share, WHO to share it with, HOW to share it, WHEN to share it, IF to share it.
So much to consider.
So much to decide.
So many heavy conversations.
A hell of a thing to share all the above as needed–verbally and in writing–to ensure all your wishes are understood, respected, protected, and honored. Not a time for confusion or misunderstanding.
All the above not knowing how long the rest of your life is going to be.
It’s a hell of a thing.
A hell of a thing.
An Eye Opener
It wasn’t until I started getting my affairs in order that I appreciated the weight of honesty, courage, and love required to do it right…
I’m not just talking about the time, expense, and aggravation required to compile and organize the ephemera of one’s life, understand how the system works, find legal help, do the requisite paperwork, and make it all official.
I’m talking about the PROCESS, as deeply instructive as it is disquieting…
… of taking inventory, literally and figuratively, of one’s life.
… of taking stock of what really matters and what doesn’t.
A PROCESS that requires the deepest soul-searching you’ve ever done…
… that demands you look death straight in the eye without pretense.
… that clears the mind and heart of all trivia.
… that requires the most brutal honesty–first with yourself, then with others.
… that requires the heaviest conversations you’ve ever had.
… that teaches you who your real friends are.
… that teaches you that it’s not just about you.
… that demands you bury the hatchet and to leave nothing unsaid that needs to be said.
… and that requires you to detach your identity from your material possessions before death takes them all away.
Stuff & Junk
Getting my affairs in order would be incomplete without the gut-wrenching, heartbreaking process of taking inventory of my material possessions…
Final inventory, that is, both literally and figuratively…
… of so many things large and small… some long unseen, unused, and forgotten… in the closet, cellar, attic, and garage.
Rusty tools, pots and pans, an old TV, and worn out shoes. Prized possessions and mementos: photographs, diplomas, trophies, treasured gifts, favorite books, ticket subs, wisdom teeth, birthday cards, and love letters… scraps of notes for that book never written.
So many memories. Almost all bittersweet. Of the things I used to do, the persons I used to be, the things I once held dear. Of crushing defeats and private victories. Of painful regrets and unrequited loves. Of the wonderful people I used to know. Almost all mattering to no one else but me. And almost all of it destined for the landfill.
In the meantime I’ll do my best to relieve my survivors of the burden of divvying up and hauling off my precious junk when I’m gone. And I hope to leave each dear person a keepsake or two to laugh and cry and remember me by, even if just for a little while.
Relief
I can’t overstate the peace of mind and enormous sense of relief that came with getting my affairs in order…
Knowing that I will not become an undue burden on anyone…
… that nobody has to wonder what my final wishes are.
… that I am not leaving my survivors with work to do.
… that nobody need make any difficult decisions during an already stressful time.
… that nobody need act against their religious views.
… that all my advance medical care wishes are in place legally.
… that nobody has to hunt for important documents.
… that I’ve hired a fiduciary (a professional executor) to handle all my affairs.
… that the bulk of my estate will be donated to causes I care about.
… that everything has been clearly communicated (both verbally and in writing) to all impacted parties.
… and knowing that I am leaving nothing unsaid that needs to be said.
back to… Table of Contents
My Advice for Patients
Google at Your Own Risk
Advice for cancer patients: If you really want to make yourself sick…
… google your symptoms, possible diagnoses, treatment options, treatment side effects, drug data sheets, possible complications, ways to die, and life expectancies.
The business model of websites like WebMD and Healthline.com is clear: Make lots of money by infiltrating your day with endless clickbait advertising, almost none of which is useful and much of which can be dangerous.
You’d think that places like NIH, Wikipedia, and Mayo Clinic would provide well-organized libraries of accurate, useful, up-do-date, empowering information that is sensitive to your needs as a human being.
Instead, what do you find?
Information that’s either too narrowly focused or too general to be useful.
Incomprehensible medical jargon.
No insight at all into the differential diagnosis process.
The occasional horrifying image.
Alarming language that sends your stress level through the roof.
Even more things to add to your already long list of things to worry about.
Perhaps this is the way it has to be in any complex, dynamic arena such as cutting edge medicine, but no matter…
Because, in my experience, none of my internet searches answered the simple and obvious questions (too many to list here) that might have empowered me to act or given me some peace of mind. Quite the opposite: They filled my head with outdated, useless, and often misleading “information” that left me even more uncertain, anxious, depressed, and disheartened than I was before. Furthermore, none of these searches even remotely helped to diagnose my cancers or to define a path forward. On the contrary, most were a wild goose chase that delayed the correct diagnosis—postponing treatment and prolonging suffering.
Rant complete, I leave you with three pieces of advice:
(1) The internet is not the place to play doctor on yourself.
(2) You are an individual. Your case is unique. Nothing on the internet appreciates this fact. (Perhaps AI will change that someday).
(3) Find doctors who will listen. Find doctors you like, trust, and respect. Establish a relationship with them. And help them to help you.
Pain Management: Don’t Be a Hero
The single most important lesson I learned about dealing with cancer pain… and the only unsolicited advice I give to other patients when I have the chance:
Don’t be a hero.
There is no reason to add physical pain to the overwhelming emotional burdens you’re already carrying.
So, let your oncologist (by way of the triage nurse, chemo nurses, or your doctor’s medical assistant) know you are in pain or in any discomfort whatsoever. They want to help. Work with them and be absolutely honest about your symptoms. There’s almost certainly a way to help you feel better.
Asking for help isn’t being a crybaby.
Asking for help isn’t being a bother.
This is so important that it’s worth repeating in bold an all caps…
DON’T BE A HERO.
Pain Management: It’s Okay to Ask for Help
It’s taken me years to learn how to manage my many cancer pains properly…
Partly because there’s no manual for doing so.
Partly because everyone’s journey is unique.
Partly because I had to learn that cancer pain does more than hurt.
Partly because I had to learn how the medical system works.
Partly because my medical professionals and I needed time to get to know each other.
Partly because finding the root cause of certain pains is not easy.
Partly because finding the root cause of certain pains requires lots of tests and testing takes time.
Partly because some pains come and go.
Partly because some pains move around.
Partly because I was still learning what cancer does to a human body.
Partly because I didn’t want to be a crybaby.
Partly because I didn’t want to be a bother.
Partly because I hoped the pain would just go away.
Partly because I wanted to experience what full on cancer pain really feels like.
Partly because I was afraid of getting hooked on pain killers.
Partly because I didn’t understand how certain pain medications worked.
Partly because I didn’t understand what it means to “stay ahead of the pain” (pain meds take time to start working).
Partly because I didn’t realize how many highly effective palliative interventions are available: medicines, surgeries, and radiation treatments.
I have gone under medicated and under treated–sometimes for days and weeks–because I under reported the nature and the severity of my pain symptoms.
And so, I repeat my only unsolicited advice: Don’t be a hero. Don’t suffer needlessly. Don’t do what I did. Let your health care providers know you’re in pain or any discomfort whatsoever. It’s almost guaranteed that they know exactly how to make you feel better.
Being a Good Patient (coming soon)
coming hopefully mid May 2026
back to… Table of Contents
For Family & Friends
The Elephant in the Room
Please know that it’s perfectly okay to talk about cancer around me…
And it’s also perfectly okay to say the word “cancer” around me.
The sound of… and topic of… “the c-word” causes me no distress at all… as I processed the emotional gut punch and harsh realities that come with an advanced cancer diagnosis a long time ago.
Please know that it’s okay for you to ask me: “Frank, I don’t want to invade your privacy or anything, but I heard through the grapevine that you have cancer. So, how are you doing, man?”
In fact, broaching the subject is more than okay; it’s quite welcome… for at least three huge reasons:
First, such an overture alleviates any worries I have about being a downer or burden on anyone.
Second, your willingness to engage with such a heavy subject opens a door that allows me to be comfortable sharing what’s really going on with me.
And third, and most important, such reaching out is a powerful medicine for the utter isolation and loneliness of it all.
Seclusion
Over my fifteen years and counting of living with cancer, I’ve gone into seclusion a hundred times… for all kinds of reasons:
To retreat to my man cave in order to relax and recharge… typically immersing myself in reading, writing, or music… or binge watching some classic movies.
To conserve my limited energy for the medical stuff I’m enduring or about to endure.
To prep for or rest, recover, and heal from a treatment or surgery.
To escape the exhaustion and isolation of putting on a face for people… of pretending to be okay when I’m not.
To protect my possibly compromised immune system from ignorant, arrogant, inconsiderate anti-vaxxers and anti-maskers.
To hide myself because a highly visible wound might make me scary to children.
To avoid superficial social occasions. (Call me a snob if you will, but I have no time and energy to waste on small talk, petty complaints, uninformed opinions, or idle chit chat about vulgar topics like money, sports, or the latest celebrity gossip.)
To get my affairs in order.
When I go into seclusion, I know that my silence may appear quite anti-social. But I assure you I’m not ghosting you. I’m just taking care of myself… and being protective—sometimes savagely protective—of my very limited and infinitely precious time and energy.
continue… For Family and Friends: Topic TBD
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Coping with Cancer
Doing What You Must
On those days when I’m not in pain, not exhausted and weak, when my mood is pretty positive, when I have something to look forward to…
… when I’m not stressed about a symptom, not giving a blood or urine sample, not worried about a test result, not having an infusion, not ordering or picking up a prescription, not prepping for a procedure, not having a procedure, not recovering from a procedure, not having a skin biopsy, not having a bone marrow biopsy, not having a liver biopsy, not waiting for a pathology report, not waiting for a wound to heal or have sutures removed, not having an ultrasound, X-ray, MRI, CT, or PET scan, not having an EKG, not having an endoscopy, cystoscopy, or colonoscopy, not having a radiation treatment, not being chemically castrated, not prepping for surgery, not having a surgery, not recovering from a surgery, not being catheterized, not managing side effects, not treating an opportunistic infection, not having a stent or nephrostomy installed or removed, not ruminating about a difficult decision, not paying medical bills, not scheduling my next slew of doctor appointments, not dealing with schedule conflicts, not getting my affairs in order, and not battling the sometimes mindless and heartless bureaucracy of the healthcare system… the last thing I want to do is be a patient.
The last thing I want to do is play doctor by obsessing over the latest research on my disease and treatments.
The last thing I want to do is be a poster child.
The last thing I want to do is be a Medical Aid in Dying advocate.
The last thing I want to do is be a healthcare legislation lobbyist.
The last thing I want to do is be a patient’s rights activist.
The last thing I want to do is be a Medicare for all advocate.
The last thing I want to do is be a cancer celebrity.
The last thing I want to do is write about cancer.
The last thing I want to do is talk about cancer. (unless I really do want to talk about my experience)
Alas, I never want to do these things, but often feel like I have to do these things.
Such is yet another burden on top of the already overwhelming burden of being an advanced cancer patient.
So, as much as I’d like to be a patient only when I have to… and to not be a patient when I can… doing so is so much easier said than done.
Seeing a Counselor
Years ago, when my diagnosis and prognosis took one of its major turns for the worse, my oncologist asked me about my emotional state of mind.
I told him I was “managing, considering.”
But I wondered: How am I supposed to feel?
How is anyone supposed to feel?
He specifically asked if I was depressed.
Anyway, I responded by saying that I didn’t think I was depressed. Although I had my moments wondering how hard I’d be willing to fight to stay alive, I wasn’t giving up. Neither did I feel sorry myself. I simply accepted my circumstances, no matter how unpleasant those circumstances might be. And my behaviors in response to have a life-limiting illness and all the physical and emotional trauma that entails all seemed quite rational. How could I be depressed?
Only in retrospect do I realize how overwhelmed I was. Call that state of mind what you will. Flooded with emotions I didn’t even know were possible. Emotions that had no names. Words like depression, anxiety, and stress do them no justice. I still fail to find the language to describe the thoughts that hijack your brain and feelings that invade your muscles, bones, heart, and stomach against your will… sometimes even in your sleep.
Anyway, my oncologist told me I was depressed–even if I didn’t think I was–and referred me to a counselor.
And so I went.
IMPORTANT NOTE from Frank: Everything you read here is based on my and only my experiences and circumstances. Nothing here should be read as a criticism, judgement, or rejection of counseling, psychotherapy, or anti-depressant and anti-anxiety medications.
My therapist was a nice enough fellow, but it took only two sessions for me to realize that there’s nothing he could do for me. Not because he lacked empathy or competence, but because I had no issues to work through. I’m not bragging here. I credit this to decades of life lessons learned the hard way and the hard work of getting my shit together. In other words, aligning my thinkings, feelings, and doings with reality.
I wasn’t angry.
I wasn’t in denial.
I wasn’t bargaining.
I wasn’t feeling sorry for myself.
Because I never felt like “it” couldn’t happen to me. It’s just genetics. Luck of the draw. It’s how the universe works. Not to make light of things, but in a phrase it is what it is.
I never felt the need for or interest in trying anti-depressants or anti-anxiety meds. I wanted to feel the full force of my emotions without trying to mask them with tranquilizers.
Neither did I feel the the need for a support group. Because the last thing I wanted to do when I wasn’t being a cancer patient is be a cancer patient.
If there’s a word to describe the most painful emotion throughout this journey, it’s grief: grief for my lost virility, strength, and energy, grief for lost “friends”, grief for the loss of everything I used to be, grief for every opportunity to pluck the day denied, and grief for every future I could no longer dream about or commit to.
And I realized there was only way to keep on keeping on: I had to reinvent myself.
Reinvention (coming soon)
Coming hopefully mid May 2026
About the Author
Frank J. Peter
A uniquely burdened and blessed male primate who otherwise refuses to be labelled.
He jumped off the treadmill of “success” years ago, belongs to no clubs, has no religious or political affiliations, and holds no positions of coercive authority. Although born in the United States of America, he considers himself, first and foremost, to be a citizen of the world.
His status as a freelance human being was partly earned (a source of deep satisfaction and pride) but was enabled mostly by opportunity (a source of deep humility and gratitude). He does his level best to honor his privileged existence by embracing life with compassion, courage, and generosity.
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Just an after reading the whole thing thought:
For someone so into taking actual action perhaps giving 100% of your assets to causes isn’t quite perhaps 99% not quite right.
Thanks for sharing?