Some pains hurt just a little; others make you wish you were dead…

Table of Contents

---

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.)

back to… Table of Contents

---

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).

back to… Table of Contents

---

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.

back to… Table of Contents

---

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.

back to… Table of Contents

---

“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.

back to… Table of Contents

---

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.

back to… Table of Contents

---

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.

back to… Table of Contents

---

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

back to… Table of Contents

---

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.

back to… Table of Contents

---

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.

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.

back to… Table of Contents

---

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?

back to… Table of Contents

---

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

---

Frank’s Cancer Story continues… My Life Expectancy