An unvarnished, deeply human glimpse into the underworld of living with advanced cancer…

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Preface

My name is Frank, an advanced cancer patient who (as of April 14, 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.

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Health Status Report (Updated May 22, 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, chemotherapy, 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.

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What Kind of Cancer(s) Do I 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 April 14, 2026)… being treated quite successfully… and rising every day with the conviction that life is still worth living and fighting for.

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Frank’s Cancer Story continues… My Skin Cancers