Faced with a not-so-great prognosis, I kept my eyes on the reflection in the glass that I keep more than half full. There would be time to laugh with family and friends. Dance in the street. Enjoy good wine. And write. Sixty years of stories in my head would need to make it to my keyboard. Some already in progress. Most too securely in memory lockdown.
Today that glass is filled to the rim and my keyboard’s letters are worn.
My Diagnosis
Recently I asked my hematology/oncology specialist, Dr. Ellen Ritchie, what her notes implied on a cold December day in 2019 when I took the train 180 miles south to New York City for a consult. I didn’t ask my prognosis at the time. She didn’t offer it. But by the time I left the Weill Cornell leukemia clinic four hours later, I was already jumping through hoops to qualify for a myelofibrosis clinical trial that would change my life, forever.
For nearly 30 years, I have had a diagnosed rare chronic blood “disorder,” a myeloproliferative neoplasm (MPN) of one type or another. There are also strong reasons to believe it was present as early as my childhood. When in 2008 the World Health Organization reclassified MPNs as cancers, including essential thrombocythemia (ET), polycythemia vera (PV) and myelofibrosis (MF), I was not on board.
Nobody likes to hear a Big C diagnosis, particularly for a disease they thought was benign. In fact, when I first saw MPNs referred to as a cancer, I wrote to the non-profit MPN Research Foundation and suggested they remove the C-word from their website. How, I thought, could they be so misleading?
That’s when I discovered I was not up to date with my own condition. MPNs are now considered a malignant condition of the bone marrow, affecting one, two or all three types of blood cells: white cells, red cells and platelets. For a long time, I preferred not to use the cancer label, as it implies an acute condition, something we want to immediately cut out, irradiate, remove all signs of, however possible.
A chronic cancer, like an MPN, is different. You live with it as an everyday presence. You control your symptoms. You take the drugs your body may respond to in the short and long term. While the uncertainty of disease progression is palpable, you live with hope for the future. For me, that hope has paid off, and without a bone marrow transplant, traditionally considered the only (sometimes) curative therapy.
Gratefully and unexpectedly, the combination drug study I enrolled in five years ago continues to show remarkable results. My blood counts are at near normal levels. My enlarged spleen and severe fatigue are history. And evidence of the problematic fibrosis (scarring) that was previously seen in my bone marrow is undetectable. I know this after some 11 bone marrow biopsies.
Dr. Ritchie calls me the poster child for participation in clinical studies. “Go live your life,” she recently told me. “You’re one of the lucky ones … it’s like you won the lottery.”
My Approach to Life
Symptomatic or otherwise, I always opened my morning eyes with a clear vision of the possibilities in front of me. Embrace each speck of sunshine. Walk, jump, twirl on my toes for the pure joy of it. Celebrate each day like it could be my best.
I fully intended to dance at my sons’ weddings; to hug my yet-to-be conceived grandchildren. I would not accept anything less. Had I known five years earlier that my condition offered a median survival of 16 months (thankfully based on outdated research), would it have changed how I live? Honestly, I don’t think so.
My approach to life is simply in my DNA. I am the daughter of an astoundingly strong mother and kindest-man-in-the-world father, both now deceased first generation Americans of eastern European descent. I’m a proud mother of two amazing young men, Zachary and Max, and the wife of an expat Brit, Danny, the love who stole my heart at age 53.
When the COVID-19 pandemic finally began to slow in the autumn of 2021, I was gifted a special daughter-in-law, Rachel, courtesy of Zach’s fabulous judgment. With more than a baker’s dozen, my step “kids” and their spouses and children nicely rounded out our life. Then came Zach and Rachel’s baby Nathan, named for my beloved father. His smile stirs my soul and has me acting like an iconically silly grandmother.
These are the things that define me, not living three decades with a rare cancer.
Always a Writer
I am a lover of music, the arts in all forms, nature, cycling – equally at home deep breathing country air and city smog. And I am always a writer, though my sixth-grade teacher would still be a disbeliever if she remained on this Earth.
I didn’t like Mrs. Doyle much and the feeling was mutual. She gave me failing grades in English for an entire year! Throughout elementary school and Junior High, I was always in the lowest reading level. And I did poorly on reading comprehension tests. Yet, I made a living as a writer ever since my “portable” computer required a three-foot-tall carry bag and all my strength to swing it over my shoulder. Today, I would certainly be diagnosed with ADHD.
Instead, I have a vivid memory of my mother and I sitting on the steep center steps of our two-bedroom, one-bath brick Cape Cod style house, the first home my parents didn’t rent but humbly owned. We were laughing the kind of hysterical laugh that squints your eyes, ruffles your stomach and causes teary wet hot summer cheeks. We had just opened an official looking letter stating that in the fall, I would be in the AT section of fourth grade – the Advanced Track classes, where I’d read the Wall Street Journal and discuss the national headlines each morning, advance my vocabulary and worldly perspective on current events. It was beyond comical. The “Advanced” track? Really? My mother was not cruel as it may sound, she simply couldn’t control the contagion as I doubled over in uncontrollable laughter.
I was a terrible student. My teachers tried moving me to the front of the class so I would pay more attention. I was sent for reading glasses I never really needed. Every year, every quarterly report card held a similar, simple message: “Ruth is very bright, if only she would apply herself.” The move to AT was based solely on my IQ tests. Yes, I was in fact “bright,” if only I was ABLE to apply myself.
Over the years, I learned to compensate. The first time I remember enjoying school academics was in seventh grade when I wrote a creative story that earned a top-of-the-page note, which I read over and over. “Ruth has an extraordinarily vivid imagination,” it said in perfect cursive. Other promising notes followed.
Honestly, high school bored me, other than friends and Bruce, my four-year sweetheart. When my friend Steve asked me to help with the monthly school magazine, I hesitantly agreed. The publication was mailed to every family in the school district, covering news, sports and highlighted features. By the next year, I had the title editor in-chief, with a full list of student contributors and editorial staff.
I thrived on the time-consuming evening and weekend tasks with tight deadlines. Four years later, I graduated with a Syracuse University honors diploma from Utica College.
My journalism and public relations degree took me to midtown Manhattan. I was a 22-year-old account executive at a mid-size public relations firm in a beautiful three-story townhouse, complete with state-of-the art video studio (and a fireplace in my office). Sometimes in the middle of a 10-hour day, I would sit at my desk and stare out the window – astonished at my found passion for reading, writing, and problem solving.
My work had me flying across the U.S. on national media tours, sometimes in a client’s two-seater Cessna. I juggled in real time the daily news-generated changes that altered a busy schedule, often five interviews in each city – nine cities in ten days. I coached to prepare subject matter experts for the expected and unexpected questions of editors and editorial boards, radio and television producers.
I spent the next several years revolving through national and state public affairs doors responding to the most current crisis in Washington or state capitals, mostly on behalf of the non-profits I represented.
Forty years later, I am living the true dream that lurked behind the numerous business cards with my different titles, organizations, and entrepreneurial endeavors. “Freelance Writer” is the only label I ever truly aspired to wear.
By the mid-90s, I had contributed to dozens of New York Times articles as a regional stringer. I would work late into the nights so I could spend daytime hours raising my two young boys. I remember clearly the two of them, Zach at seven and Max just five, hearing me say the F-word for the first time.
No, I couldn’t get them to bed right then. “Can’t it wait until later,” I was respectfully asked by my then husband. I had my first time-sensitive, globally significant assignment from a NY Times Metro editor. “It’s the f-ing New York Times,” I respectfully answered. And that was that.
A hot air balloonist from a nearby town in Upstate New York was shot down over Russian airspace when he accidently veered off course during an international competition. It was a phone call of nightmares when I finally tracked down his sister for some background and comment. Though the Associated Press put it out on the news wire, and CNN was already reporting on it, the U.S. State Department had not yet notified the family of his death. That news came from me. Not something you ever forget.
Since then, my stories have published in multiple daily newspapers and trade publications; my reporting, essays and blogs distributed by global media outlets. I have hosted dozens of live interviews, award-winning webinars and podcasts, including a video series for WebMD.
My Story About Living With an MPN
One March Sunday morning, as the world remained in lock down against a persistent COVID-19 pandemic, I answered my mobile to hear Max ask if I had seen the Times yet. I pulled it up online and there on the homepage was a New York Times piece with my byline. It was the first time I wrote a first-person story – my story about living for nearly three decades with an MPN. Originally published a few days earlier in the Times newsletter, Well, it became an Editor's Pick and now appeared on digital page one, with a page two teaser in the print edition.
But it wasn’t the prominent NY Times byline or even the Sunday homepage that made my heart swell. It was the hundreds of comments posted on the Times website; the number of emails and texts and Tweets. It was an outpouring of thanks, for sharing my personal story. It was gratitude from others with an MPN, their families, and medical practitioners. And I answered every single one. I was thankful and humbled.
While it was difficult to put myself out there so publicly, I felt I had the opportunity to make a unique contribution. I knew that my skills as a writer could help people who didn’t have my privilege of access to MPN super specialists. I could help change the conversation about the label and diagnosis of a “chronic” cancer. My experience as someone who had experienced all three MPNs could offer hope to others led to believe that their diagnosis was a death sentence, whatever the rate of speed.
My digestible 1,000-word essay was sharable and helped illuminate these rare and often misunderstood conditions for people living with them and their loved ones. It could help explain to family members and friends why their social invitations might often be turned down. They don’t know that sitting in a recliner might be the best thing some days, because the fatigue simply needs to be given into. They may not know much about the condition or its effects; they may have heard “blood cancer” and never moved beyond the associated, terrifying fear.
When I pitched the Times editor my story, I knew exactly what I wanted to accomplish from my very first words, as they traveled from my head to my keyboard. I wanted to educate and empower others through my storytelling.
“I have a rare chronic blood cancer.”
“I am a poster child for hope through clinical drug trials.”
“I will dizzy myself silly to dance on my toes at my son Zach’s pandemic-postponed wedding.”
I have. I am. And I did.
Two years after my story first appeared, and twice rescheduled due to COVID concerns, I looked into Zach’s eyes, beaming, as we danced to applause and a heartwarming rendition of Van Morrison’s Mama Told Me There’d Be Days Like This.
Editor’s Note: This essay has been adapted from Ruth Fein Revell's forthcoming book The Big C2: stories from the chronic side of cancer. Go to https://www.rfrwrites.com, click the SUBSCRIBE button, and receive a link for book pre-orders when available from the publisher. This collection of essays and interviews to inform and inspire is expected on shelves and online in early November 2024.