I would never have imagined that at the age of 29, I would be lying in intensive care fighting for my life with stage IV anaplastic large cell lymphoma (ALCL). What a wake-up call, literally!
Nicknamed “Sleeping Beauty,” I woke up after three weeks to learn my true diagnosis following months of illness. By the time I opened my eyes, I had already undergone my first five-day round of chemotherapy…with five more sessions to go. It was going to be a long summer.
But as it turns out, the treatments, emotional struggles, and spiritual awakenings were only part of the battle. Soon enough, the bills began rolling in.
I tend to be a Type A planner. The better insurance policies, retirement plans, a couple of savings accounts for a rainy day, and frugal spending were all my style. Lymphoma was not part of the plan.
Where to start?
So what did I do? At first I skated by paying the smaller bills with my income and savings. I made my way through the wealth of sick days I had accrued and spent a great deal of time at Atlanta Cancer Care of Northside Hospital and the Bone Marrow Transplant Group in Atlanta, Georgia. When I was coherent enough to begin my research, I didn’t focus on only lymphoma and care and nutrition, I also researched options for financing such a journey. I began with the office social worker -- and what an impact this had on me.
From the day I started taking Gleevec pills to manage my chronic myeloid leukemia (CML), I understood I would depend on them for the rest of my life.
Or will I?
Things have changed more than a bit since I was diagnosed eight years ago and studies are showing there could be a drug cure for a disease thought to be incurable. The evidence is showing that this “treatment-free remission” isn’t likely to happen for everyone, but just the mere possibility was enough to send me cyber-scurrying for every scientific journal I could find.
I would be happy to not have to do an anti-nausea dance every night or worry that missing a pill will send my chromosomes into a frenzy. The latest research shows that some CML patients who’ve reached a deep long-standing remission may be able to stop taking Gleevec (imatinib) and have no recurrence. Two of the most well known CML medical experts have even said publicly they are optimistic. Woo-hoo!
But wait, this is my life we’re talking about. Research is just that – research. Here at The Leukemia & Lymphoma Society (LLS), we know that a promising compound has to weather years of study and numerous clinical trials before it emerges as a marketable drug. And in this case, it seems mind-boggling that someone would stop a drug that was hailed as a major medical breakthrough (making the cover of Time in 2001) and say, “I’ve had enough. Let’s see what happens.” Just because it worked for some people in French and Australian studies doesn’t necessarily mean it will do the same for ME.
Diane Balistreri of Hartsdale, NY, recalls her diagnosis and treatment for acute myeloid leukemia -- without a doubt the most difficult experience of her life.
“Hola,” I said playfully, as I answered my cell phone on a beautiful Saturday -- April 21, 2012.
“This is Dr. so and so. I’m calling because your blood work from yesterday is all out of whack.”
“What do you mean, ‘Out of whack?’”
“Your white blood cell count is high,” he said.
“It's at 63,000.”
“And what's it supposed to be?”
In that moment, while at a barbecue with friends, I knew that I had leukemia. I uncharacteristically fell apart crying, saying, “This can’t be happening to me!” He said specialists were waiting for me at Westchester Medical Center and that I needed to get there immediately. So with just the clothes on my back, I checked into the hospital to begin the most surreal experience of my life.
Within the next few days, I was officially diagnosed with acute myeloid leukemia (AML), a rare and aggressive disease that is treated with intense chemotherapy. The goal is to annihilate diseased bone marrow, thereby killing the leukemic cells too. Unfortunately, this form of leukemia often returns within two years, so a stem cell transplant is highly recommended.
The news was devastating and unbelievable, yet I felt a strange calm. I think I went into warrior mode -- relying on sheer determination, strength and positivity to assist my body in combating the illness.
Fortunately, the initial round of chemotherapy put the cancer in remission, and after some hesitation, I decided to go for a stem cell transplant. Four potential donors were found within weeks and one was a 9 out of 10 match – 9 out of his 10 blood proteins matched mine.