Welcome to my web page for my brand new book,
“Hope Begins in the Dark: 50 Lymphoma Survivors
Tell Their Exclusive Life Stories.”
This inspirational and informative first-of-its-kind book, which is something I’ve wanted to write since I was diagnosed with lymphoma back in late 1996, includes remarkable lymphoma survival stories from athletes, actors, kids, homemakers, CEO’s, rock stars, scientists, authors, soldiers and more. It is my most meaningful lymphoma awareness project yet.
When I was told that I had non-Hodgkin’s lymphoma in late 1996, the world suddenly felt like a very dark place. It was a surreal moment when my ear, nose and throat doctor, after doing a surgical biopsy of a walnut-sized lump I had discovered on my neck, came into the recovery room and coldly told me I had lymphoma and referred me to an oncologist. I went into a mild state of shock, followed by some big-time denial. Cancer? Me? I tried to convince myself it was just a bad dream. It wasn’t.
My oncologist subsequently concluded that I had follicular, low-grade, stage IV. At the time I didn’t know what any of that meant, but what I did understand is that I had a very large tumor in my nasal pharynx and smaller tumors in my neck, abdomen and groin. It took a while for all of this to sink in. But once it did, with the help of my loving wife, Gabriela (we got married a week before I started chemotherapy), and the rest of my family and my friends, I decided I was going to do anything and everything in my power to survive. The simple reason? I love life with a passion; it’s worth fighting for.
Before I started chemo, I desperately searched 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 specific and diverse strategies for survival, their treatments, their diet, their supplement choices, and how lymphoma had changed them as people. I wanted to read a book filled with success stories. I knew a book like that would be of great help and encouragement to me as I began my treatment. But that book didn’t exist then.
It does now.
When given a lymphoma diagnosis, the people in this book did not crawl into a corner, they chose to stand and fight. Not that they weren’t scared. But they didn’t cower. They took a deep breath, rolled up their sleeves, and prepared for the difficult tasks ahead. Even in their darkest moments, they never stopped hoping.
Naturally, no two survivors’ paths are the same, and each of the following stories, while equally fascinating, is unique. I’ve learned something different, and valuable, from each survivor in this book and hopefully you will, too.
But for every person in this book, there was a moment when eyes were opened, fears were faced, and life was embraced. That’s the place to start when you want to make your way to the light. Writers and philosophers have suggested that hope, which is arguably the most precious of all things, begins in the dark. “The stubborn hope,” Northern California author Anne Lamott once said, “that if you just show up and to do the right thing, the dawn will come. You wait and watch and work, you don’t give up.”
As I write this, I celebrate 11 years of survival. My original oncologist told me I’d be very lucky to live five years. My first treatment, in early 1997, was a common type of chemo called CHOP with which many of you are familiar. It was rough, but it put me in remission. For a while, anyway. When my cancer recurred two years later, I told my doctor I wasn’t going to do another round of chemo. I told him I was going to enroll in a clinical trial of a then-new, experimental radiolabeled monoclonal antibody drug for lymphoma called Bexxar.
He wasn’t sure I should, but I told him I’d done lots of research on this drug – evidently more than he had done - and had concluded this was the best option for me. He reluctantly went along with it. Not that he had a choice, of course. I listened to everything he had to say, then made my decision. I took control of my life.
These drugs are saving lives, and now, sadly, they are being threatened for reasons that have nothing to do with how well they work. They need to be saved.
If you would like a copy of this book for yourself or a loved one, just contact me directly at jreno@san.rr.com.
Meantime, sincere thanks to everyone for your love and support.
Be strong, and be well.
Jamie Reno
WORDS TO LIVE BY:
Whoever survives a test, whatever it may be, must tell the story. That is his duty.
- Elie Wiesel
Courage is resistance to fear, mastery of fear, not absence of fear.
- Mark Twain
If you’re scared, just holler and you’ll find it aint so lonesome out there.
- Joe Sugden
Hope is a good thing, maybe the best of things, and no good thing ever dies.
- Andy Dufresne (The Shawshank Redemption)
A ship in harbor is safe – but that is not what ships are for.
- John Shedd
If your ship doesn’t come in, swim out to it!
- Jonathan Winters
In the depth of winter I finally learned that there was in me an invincible summer.
- Albert Camus
If you don’t run your own life, somebody else will.
- John Atkinson
One hundred percent of the shots you don’t take don’t go in.
- Wayne Gretzky
The most wasted of all days is one without laughter.
- e.e. cummings
Be careful about reading health books… you may die of a misprint.
- Mark Twain
"Weebles wobble but they don't fall down."
- commercial
Perhaps someday it will be pleasant to remember even this.
- Virgil
Immense power is acquired by assuring yourself in your secret reveries that you were born to control affairs.
- Andrew Carnegie
Courage is rightly esteemed the first of human qualities because it is the quality which guarantees all others.
- Winston Churchill
Still round the corner there may wait, a new road, or a secret gate.
- J.R.R. Tolkien
Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all.
- Dale Carnegie
Knowing is not enough; we must apply. Willing is not enough; we must do.
-Johann Wolfgang Von Goethe
Fear can hold you prisoner, hope can set you free.
- The Shawshank Redemption
THE SURVIVORS IN ‘HOPE BEGINS IN THE DARK’
Brad Coffman - Iraq war veteran who did lymphoma vaccine
Wendy Harpham – physician and acclaimed author
Paul Allen – Microsoft co-founder
Maddox Johnson – 9-year-old child survivor
Martin Fry – lead singer of ABC, popular 80s British rock band
Sharon Apel – did radio-labeled immunotherapy
Andres Galaraga - professional baseball player
Robert Schimmel – popular comedian
Laura Higgins – singer-songwriter
Jonathan Alter - Newsweek senior editor
Lauri Leadley – Had chemotherapy while pregnant
Ernie Johnson - Emmy-winning network NBA sportscaster
Jonna Tomases – Wrote and starred in amazing play and film about her cancer
Rebecca Rau – diagnosed at age 13, now 15
Christine Pechera – film producer who creatied saveshristine website
Michael Werner – CEO and Lymphoma Research Foundation board member
Larry Lucchino - CEO of the World Champion Boston Red Sox
Ellen Stovall – CEO of NCCS, the nation’s oldest/largest cancer survivor group
John Gruenstein - folk singer-songwriter-guitarist and bank executive
Regina Huelsenbeck – PhD who wrote dissertation of psychology of lymphoma survival
Joe Ferguson - professional football player
Stephen Schneider - scientist, who wrote ‘patient from hell ‘book
Tara Leibel – The eternal bond between a daughter and her dad
Tom Condon – Gave $1 million to follicular lymphoma research
Jaye Joseph - started popular blog, in touch with her anger
Betsy de Parry – Did radioimmunotherapy, wrote book
Greg Dafoe - handling fear is the key
Jama Beasley – did lymphoma vaccine trial
Jerry Roberts - former editor of Santa Barbara News-Press
Susan Walsh – did radioimmunotherapy
John Gallen – anesthesiologist embraces alternative medicine
Robert Miller - lymphoma web guru
John Kuhlken – Zevalin, drummer in rock band, San Diego
Teresa Singh – among the very first to use bexxar
Mike Barela - started lymphomainfo.com
Debby Schofeld - oncology nurse got cancer, works with LLS
Joe Schneider – bike rider with great outlook on life
Joni Rodgers – comedienne and author
Elizabeth Adler – scientist who wrote living with lymphoma
Jay Birkbeck – had lymphoma as a child
Kevin Razxakwski – future oncologist did online journal during treatment
Tina Peeples – Iowa native with commen sense and decency
Craig Pollard – created golf tournament for college cancer kids, will ferrell’s best friend
Sands Bellizzi - eternal optimist
Anne Atkinson - Australian survivor
Jeff Cole – triathlete/surfer in Maine who did radioimmunotherapy
Valerie Collins – The caregiver and the cared for
Larry Mull - started “got cancer” cancer charity
Peggy Martin – joy of children gives her comfort
Sean Swarner – First cancer survivor to climb Everest
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