|The original version of my first book, "Hope Begins in the Dark"|
What I do recall is sitting in that cold chemo infusion room, shaking and scared shitless. And I remember my ghoulish chemo nurse, who took demonstrable pleasure in seeing me and my fellow chemo guinea pigs suffer.
A dismal, humorless Eastern European woman, she had no business working in the medical profession or in any profession that involved interaction with sick, vulnerable humans.
I'm not exaggerating. She was pure evil. I recall her Cruella de Vil half-smile as she administered the slow drip of that vile red liquid, the most toxic drug in the cocktail of meds they gave me to kill my cancer. It totally creeped me out the way she so gleefully put that nasty liquid into my veins.
Thankfully, most of the nurses and doctors with whom I've dealt during my 18-year cancer journey have been just fine. But when you get a bad one, it shakes your world.
Like most people, I guess, I was a deer in the headlights when I was first diagnosed with cancer. I was 35 years old, very healthy, successful, engaged to the girl of my dreams, and living on the beach. I had the world by the tail. Or so I thought. Then suddenly someone in a white lab coat is telling me I have an incurable type of cancer and that I may die just because of a stupid little lump on my neck.
I was petrified. But that frightened buck was soon replaced by a very different kind of animal. One with passion, strength and resolve. I was not going to let my diagnosis, or that nasty nurse, destroy my spirit. I remained hopeful and optimistic. And I took charge of my own healthcare.
During my chemo, I conducted as best I could a pre-Google search for a book about lymphoma survivors who’d been through this darkness and made it to the other side. I desperately wanted to read about their strategies for survival, their treatment options, diet, supplement choices and how lymphoma had changed them as people. But sadly that book didn’t exist.
Time to Preach From the Bully Pulpit
When you face death, and more specifically when you beat death, your priorities change. Everything changes. As a journalist, I'd had several opportunities over the years to write a book. I've covered dozens of stories that would have made interesting books. Topics ranged from war to politics to sports to popular music. I even had a New York book agent. But I never stopped being a journalist long enough to propose any of those books, let alone write them. I loved my day job too much.
But I knew what I had to do. I was ready now to become a real writer, as they say. Yes, I know, journalists are of course real writers. But there's just something about being a published author that makes you feel like you've entered a rather exclusive club. And this was an important book that countless people told me I was supposed to write. A calling, some said. I just knew it was something I had to do.
Still, I knew it would not be easy. Unlike a story in a magazine or newspaper, a book is a more daunting proposition. But I jumped in, head first. I just went for it. The book's working title was Hope Begins in the Dark: Lymphoma Survivors Tell Their Exclusive Life Stories. I wasn't sure if that title would stick. But it did. Through several editions.
I approached that first book project as if each of the chapters was an individual feature story. That made it a little less intimidating and a little more familiar for me. I had met literally thousands of lymphoma patients since I was diagnosed. But for the book I tried to narrow it down to the best cross-section of survivors representing a range of Hodgkin's and non-Hodgkin's lymphoma types and a wide range of treatments.
I recruited celebrities, seniors, kids, authors, homemakers, doctors, comedians, farmers, soldiers, athletes, CEOs, teachers. They are all happy to share their story in the hope that it would inform and inspire someone who had just been diagnosed. I think that sharing their stories helped the survivors I profiled nearly as much as it hopefully helps people who read the book. I know it has helped me profoundly.
And you have to be pushy, at times. That’s a common thread among survivors I’ve met. They’re not angry, but they fight. They don't take any crap. They ask questions and do their own research. They take in all of the information not just from their doctors but from a variety of sources, and then make their own decisions. Sometimes it's hard, especially if you are really sick. It can be overwhelming. But your life is worth fighting for.
The newest editions of the Hope book include a foreword by Michael Werner, a CEO and family man from Chicago who also happens to be a director of the Lymphoma Research Foundation. Michael is a lymphoma survivor and a fine writer and dynamic leader in the nationwide lymphoma community. He is determined to find a cure for this disease. Michael is also a guy to whom I sometimes turn for inspiration, guidance and friendship.
An All-New Edition of Hope
Because of the Hope books, I now get between 10 to 15 emails a day from lymphoma patients and their loved ones all over the world. It’s more gratifying than I can express in words.
And now I've begun a brand new journey. I've begun to write an all-new edition of Hope Begins in the Dark that will include stories of lymphoma patients who have embraced an entirely new generation of treatments that did not exist when I was diagnosed.
This is a very exciting time for lymphoma research. There are many new treatments now available -- some FDA-approved, others still in clinical trials. My new edition of Hope will reflect all of that.
This new edition is by far our most ambitious to date. I am just about to get started. And I am eager to show it to you when it is finished.
Since I was diagnosed with cancer, I've proudly become an advocate for cancer patients and their families. It's a responsibility I take seriously and welcome. Still, there are admittedly times when I want to just walk away from the cancer thing completely.
I don’t want to think about the ‘C’ word every day. I don’t always want to think of myself as a cancer survivor. Sometimes I just want to live my life and not think about it. Sometimes I just want to be.
And for the record, I am still a cancer patient. I have cancer in my abdomen. Yes, currently. There are several small lymph nodes in there, which technically means I am no longer in remission. But since those lymph nodes were discovered more than three years ago in a CT scan during an ER visit for something unrelated to cancer, they have not grown. At all. And I have had no lymphoma symptoms.
So life is good. I am in what we call watch and wait. Or watchful waiting. Or waitful watching?
Whatever. If my cancer does start to grow and spread, and I start feeling other symptoms, it will be back in the front of my mind again and I’ll deal with it. Probably with any one of those many new lymphoma treatments I mentioned above.
There are activities during which I don’t think about cancer at all, like when I see a movie or watch my daughter play on her high school tennis team. But the fear is always there on a subconscious level. And it certainly has had an impact on my family.
My daughter has always lived with the possibility that her Dad could get sick again. I tell her she’s a big part of the reason why I’m still alive and why I’ll always fight cancer with every ounce of strength I have. We’ve talked at length about what it means to live every day to the fullest, to enjoy life and really appreciate the gifts we have been given.
When an adult is diagnosed with cancer, he or she often reverts to feeling helpless and vulnerable, like a child. It is a daily challenge to be a good father or mother when you are sick and facing your own mortality.
Snowman on the Pitcher's Mound tells the life story of Tyler Paulson, a 10-year-old boy whose young mom is diagnosed with cancer. The story is told in the boy's voice. The book is not a downer at all. It is very positive and, I hope, funny and entertaining. But it does deal with an obviously serious topic.
Snowman is part of a forthcoming national program that helps kids when a parent or loved one is diagnosed with cancer. I’m hoping it will help, inspire and inform families that are coping with cancer. Both the kids and their parents.
My daughter and I used to read together every night before bed, and I asked her if she wanted to read Snowman after I finished writing the book, and she said yes. She read it to my wife and me. It was an emotional but very positive experience for all of us. She doesn't talk about it much, but I think and hope that she understood why I wrote the book.
I look back on my cancer journey, which began 18 years ago this month, and just shake my head. I remember so many highs and lows. But mostly I just remember the people who have been there for me. My family. My friends. And my fellow survivors. I remember you all. But I still can't remember being bald. I guess there are some things you just don't want to remember. Believe me: a little bit of denial is an important weapon in every cancer patient's arsenal.