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Let me be honest with you from the first page, human to human, so this book will probably make some or any sense at all.

I am not a doctor. I am not a therapist, a life coach, a nutritionist, or a wellness influencer with a soft-sand beach hard-body, a perfect morning routine and a neon-green smoothie sponsorship. I do not have all the answers. What I am is a person who was told, on St. Patrick’s Day 2023, that he had an ultra-rare and aggressive Stage IV lymphoma/leukemia variant — one so uncommon that my own father, a retired hematologist/oncologist with fifty years of experience treating cancer patients across three continents, never once encountered a case in his long career.

That disease is called Sézary Syndrome. You have probably never heard of it. I certainly hadn’t. In the months that followed my diagnosis, as I stumbled through a crash course in lymphoma, chemotherapy, targeted therapy, radiation, extra corporeal photopheresis, bone marrow transplants, and the particular hell of losing your sense of taste while also being deeply, almost pathologically, in love with food — I began writing. Not because I had anything figured out. But because writing has always been how I figure things out. My most dependable form of therapy.

Maybe slightly better than just laying in bed alone, staring at the ceiling and cussing at the curse (and universe).

Those early essays, posted to my personal website and shared with friends and family who wanted to know how I was doing without me having to repeat the same scary updates ten times a day, became the basis for the early chapters of this book. With few exceptions they were written in real time — in the middle of an uncertain fight, not from the comfortable distance of having already won it. That means they are messy in places. Contradictory in others. Raw in ways that still make me a little uncomfortable. Tough even for me to read and re-live again.  First I debated whether I wanted to share these ideas at all.  Eventually I debated cleaning them up more than I did as I packaged them here.  In the end I decided the mess was the point.

Because here is what I learned: serious illness does not arrive with a guidebook.  No two stories are alike.  I won’t claim to compare myself to anyone else going through their own unique war.  Nobody hands you a colorful laminated card at the hospital that says: “Here is exactly how to feel, and in what order, and here is how long each feeling will last.” Or, “This is the new way to interact pleasantly with everyone around you.”  There isn’t an app for that, either, that I’m aware of. Fork you, technology!

The terror and the dark humor and the grace notes of gratitude that showed up uninvited — all of that arrived on its own schedule, and the most useful thing I could do was try to pay attention and write it down.

This book is the result.

* * *

Who is this book for? It was for me first. Honestly, it is for anyone who has ever found themselves at the mouth of a dark tunnel with something terrifying waiting inside — which is to say, it is for everyone, eventually. If you or someone you love has received a serious medical diagnosis, I hope you will find specific things in here that resonate and help. But the principles I stumbled across over years of suffering, treatment, side effects, travel, grief, revelation, and hard-won joy apply just as much to a financial crisis, a broken relationship, a career collapse, or any other avatar of the dragon we all have to face down sooner or later.

I wrote this for the person sitting in the waiting room of an oncology clinic, afraid and alone, searching their phone for anything that sounds like a real human voice rather than a medical pamphlet or an AI chatbot. I wrote it for the caregiver watching someone they love go through something gut-wrenching we cannot fix all at once. I wrote it for the person who does not have cancer at all but has hit a wall so hard that they are not sure which way to turn. If any of that is you, I want you to know: you are not alone in the dark tunnel. You just have to walk through it.  We are all in the tunnel.

* * *

A few practical notes before we begin.

First: please read the medical disclaimer. I mean it. I am not your doctor, therapist, or priest and nothing in these pages should be treated as medical, psychological, or religious advice. The decisions I made about my own treatment were made with the guidance of actual experienced and compassionate physicians, including the extraordinarily lucky accident of a father’s profession.  Your situation is your own.

Second: I have tried to be as honest in these pages as I know how to be, which means I will not always come across in the most flattering light. I was, at various points in this story, a difficult patient, an irritable son and brother, a distracted colleague, and a man who threw a perfectly good pot of bread upma in the trash while nearly in tears. I include all of it because the sanitized version of a cancer journey — the one where the patient is stoic and inspiring at all times — is not the true one, and the true one is the only version that might actually help you.

Third: This is an unfinished story. I am still in the fight as these words go to print: in remission, but still heavily medicated and closely monitored. The dragon and I are still negotiating terms. Living life but still way off from the 5-year remission gate.  But I have gotten all the way through the tunnel to see the light on the other side, and I have learned enough along the way to believe that what I found might be worth passing on.

Let’s give that a try.  

* * *

— M. Suresh Joishy

Founder, Sezary Syndrome Society  sezary.org