Preface - A Caregiver’s Journey

A Story of what Shapes a Person if you Let it.

If I could go back to the beginning, to that first sterile room with its humming fluorescents and its quiet that wasn’t really quiet, I would change only one thing. Not the diagnosis. Not the path. Not even the ending. I would change the way time was introduced to us—because time, more than cancer, became the thing we battled. It is clear to me now that Steve Jobs was right when he said you can only connect the dots looking back. Looking back the dots pointed me to a new behavior and a new freedom of being. After all, her fate became mine, and none of us have any guarantee we will live long enough to reach the five‑ or ten‑year plans we imagine for ourselves.

When the doctor said “six to eighteen months,” he thought he was giving us information. A frame. A range. A medical estimate softened with caution. But what he gave us was a countdown, and once you start counting down, you stop living forward. You start shrinking. You brace for the inevitable instead of making room for the improbable. You stop seeing sunsets as evenings and start seeing them as warnings.

Still, steeped in the medical profession as we both were, we did know there was some finite point. It was no longer the 5 or 10 year plan to retire to the Caribbean.

If he had said instead, “You have 1,687 days, and the last thirty will be hard,” our life would have looked different. We would have understood that the first 1,657 weren’t a funeral march. They were life—untidy, unpredictable, sometimes painful, but still ours. Days to be used, not feared. Days to live inside, not tiptoe through. That is a difficult thing to understand. I learned it more than her of course. I understood, painfully, that it was her life being cut short—not mine—and that the grief would come from a different place for each of us.

We didn’t know the number of days then. You never do at the beginning. When illness enters a home, it doesn’t knock. It doesn’t wait politely in the foyer. It walks straight in, rearranges the furniture, moves into your calendar, your sleep, your appetite, your marriage. And you react with whatever instincts you have—some good, some misguided, all human.

What surprised me most was not the fear or the grief. It was how fast identity changes. One morning you’re a husband. A partner. Someone whose biggest responsibility is making coffee or planning the next trip. The next morning you’re a caregiver, an advocate, a translator of medical shorthand, a quiet guard against the thousand small indignities that illness tries to impose. You learn to be steady on command. You learn how to absorb bad news without letting it leak onto the person you love. You learn that love, when tested, becomes both fiercer and quieter. You are faced with the reality that your ten year hope was having wasted time to live already. This began to change at 51. I finally made the decisions I should have made sooner—leave the job that no longer mattered, live where I wanted to live, speak plainly, and stop pretending time was something owed to me. The lesson had arrived, whether I was ready or not. I made all the decisions then that I could have made with her. Leave a job that was useless and unneeded. Live where I want to live. Be who I want to be and say what I want to say. The lesson was coming.

People think the hardest part is the diagnosis. It isn’t. The hardest part is the shift—when your life becomes divided into Before and After, and you are still expected to live in both. You carry the fear of losing someone while they are still very much alive. And inside that paradox, you have to build a new way of loving, a new way of being, a new way of holding on. You have to search yourself too. Who are you? What are you? Why do we all play these silly games of social climbing and trying to say all the perfect words and be so correct? Some of us eventually learn that none of that matters. She learned it in the hardest possible way at 63, and I was left at 51 wondering whether I would learn the same truth without her cost. She in the very most difficult way at 63 and me remaining behind at 51....would I learn the lesson of life?

This book is about that shift. About the long corridor between what you’re told and what you actually live. About how love changes shape when confronted with mortality, and how the mundane becomes sacred when you know time is finite.

But it’s also about something quieter, something I didn’t appreciate until much later: how much life is still available, even in the shadow of a diagnosis you didn’t ask for. And even when you are the only one that remains. How joy doesn’t disappear—it just hides, waiting for permission to return. Even when you are finding joy again. How laughter can coexist with fear. How ordinary days become treasures simply because you still get to share them. And how they must become treasures again when you no longer have someone the share them with. In time, I found myself standing again, somehow still upright—”making it through the rain,” as Barry Manilow once sang, a line that carried more truth than I expected.....as Barry Manilow sang.

If you are beginning your own journey, or walking beside someone who is, I offer this: assume the first treatment will work. Assume you will have more time than you’re being told. Not because of false hope, but because you deserve space to breathe before you surrender to panic. You deserve a chance to live the days you still have, not mourn the ones you haven’t lost yet.

I didn’t know how to do that at the beginning. Very few people do. But you can learn. You can grow inside the hardest moments. And you can love someone—not just in the way you promised on a wedding day, but in the way that only real hardship teaches: fully, fiercely, without hesitation.

This preface is not the story. It is only the doorway. But if you walk through it, I hope you find what we eventually found: that even in the darkest season, life does not stop offering itself to you. Sometimes you just have to remember how to take its hand. And remember this: 1,657 days is far more than the 365 to 545 we thought we had. Go Live with them and prepare yourself. You will remain after them. Do not let their last great lesson go unheard and unlearned.