Tuesday, October 21, 2014

How Cancer Made Me A Better Writer

The original version of my first book, "Hope Begins in the Dark"
It’s weird, but I do not remember being bald. I know, I lost every hair on my head while undergoing chemotherapy for stage IV cancer. But I don’t recall ever looking in the mirror and seeing a bald guy. I must have just blocked it out. 

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

A few years after my initial chemo and after my subsequent clinical trial with an experimental radio-immunotherapy treatment gave me a second remission, I realized that if I wasn't going to write that book for and about lymphoma survivors, no one would. I knew that as a journalist I had a bully pulpit, and I thought to myself, "It looks like I’m going to be here a while after all. It’s time I start giving something back to my fellow cancer patients. It's time I did something to make a real difference in their lives."

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.

In the book, I also share my own cancer experience. And that has been cathartic. Not that it’s ever been difficult for me to discuss my story in public. I’ll talk about my cancer to strangers in elevators! I want the world to know that I am winning this fight and that you can, too.

With the publication of the first edition of Hope, I set out to encourage cancer patients to be involved and fully informed. You have to become your own best advocate, even if you love your doctor. And especially if you don't. You have to explore and consider all of your treatment options, and take charge of your own healthcare and your own life. 

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.

When I finally finished the first book, I felt an amazing sense of accomplishment. As a reporter I’ve covered everything from 9/11 to the war in Iraq to presidential elections, but anything and everything I write that has to do with cancer that potentially helps patients and their families now ranks at the top of the list in terms of what I think is most important.

That first book and its subsequent editions have been read by tens of thousands of cancer patients and their loved ones around the world. 

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.

But I'm so happy when I am able help another patient find the right treatment and/or the right mindset to negotiate the maze.

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.

Meantime, I'm living my life as normally and joyfully as I possibly can. The fear that my cancer could flare up is not something I think about every minute of every day. But I still feel my neck for lumps every morning. I instinctively put my hand under my chin and feel for lymph nodes. But I don’t think about cancer 24-7. I just can’t. 

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. 

Snowman on the Pitcher's Mound

My daughter is the inspiration for my other book, a novel called Snowman on the Pitcher’s Mound, which is based largely on conversations she and I have had. Kids are often the forgotten victims when a young parent gets cancer. They are sometimes unfairly neglected. They are scared, too, and confused, but a sick parent isn't always there to help them in the way a parent would if he or she were healthy. 

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.

Today when I look in the mirror, I see the same person I always have. But every morning when I wake up there’s a moment in which I get a little butterfly in my stomach, a split second in which my brain reminds my heart that I’m a cancer survivor. And when that happens I just can’t help but smile. 

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.


8 comments:

  1. I searched far & wide for a book like yours and never found one when diagnosed in 2008; my local library will be getting yours (via my recommendation) - can't tell you how much it would of helped to of read other people's journeys, when mine began. Sure, there are Facebook groups now, a ton 'o info on the internet (some of which will just scare the crap out of a new patient), but nothing is as comforting as turning those paper pages when you can't sleep at 3 in the morning. Thanks for what you do ~ Heather, PCT hiker, 6 year survivor fNHL/stage 4, tx 2009 w/Fludarabine & Rituxan. (Looking at Zevalin since I have relapsed as well)

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  2. Heather, thanks very much for sharing your story here. You can get my books directly from me. Just let me know who to contact at your library and we will send them one right away. Zevalin I believe is a very good option for you. Please keep me posted on your journey and feel free to contact my personal email, if you like, which is jreno@san.rr.com . All the best to you!

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  3. Jamie, thank you for posting on the lymphoma page. I was diagnosed not quite a month ago.

    I also come from a news background (producer at KWCH in Wichita; writer producer at KCBS and KCAL in LA). I look forward to reading your book! I've been blogging as well and writing has always been therapeutic for me. I've had a lot of people telling me I should turn my blog into a book. Frankly, I don't see it as such, but maybe you can read it and give me some of your own thoughts and advice?
    I try to keep a positive attitude and use my own blunt and sometimes twisted sense of humor to get through it all. My blog is gotthecancers.wordpress.com --warning-- graphic language!

    While I am just beginning my journey, it has definitely been helpful speaking with other cancer patients, so I look forward to getting my hands on a copy and learning about their (and your) story!

    Thanks, Sarah

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    1. sarah, thanks, so great to connect with you. where are you located now? you can only purchase the books from me, by the way. the ones at amazon and other places are old, outdated copies. please feel free to contact me at my email jreno@san.rr.com . what is your treatment option? i hope you are doing well!!

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  4. Sending you my affection and all the positive vibes I can muster, Jamie. What a beautiful legacy you are creating for your daughter -- to have a father who has dedicated much of his talent to be a blessing to others who need to connect with you. I think of you often and always hope for continual good news!

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    1. Thank you Sue for your kind words. I think of you often, as well, and always with for you the very best! You are a very courageous and compassionate person!

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