“My Voice” by Betsy de Parry

Betsy de Parry - 'Survivor'

On January 7, 2002, cancer called.  Literally. I was driving on the interstate thinking about the goals I wanted to accomplish during the new year when my cell phone rang. Three little words, “We suspect lymphoma,” crashed over me with the force of the semi traveling next to me.  And they replaced my grandiose goals with one: stay alive.

That call immediately plucked my husband and me from the busy life we knew and plunged us into unfamiliar territory without a compass or a map, much less the time to get our bearings. Suddenly, perfect strangers were asking us to make choices without our fully understanding the consequences, and they were giving us very little time to make those important decisions that would affect my very life.  I’ve often had more time to find the perfect pair of shoes to match an outfit!

Within days, the diagnosis was confirmed: follicular non-Hodgkin’s lymphoma, stage IV. And the facts were brutal.  There was no cure for my type of lymphoma. Existing treatments generally slowed but rarely stopped it. Each subsequent relapse would require stronger drugs, and remission periods would decrease with each successive treatment.  With therapies that were then available, the median time from diagnosis to death was 8 years.

I feared that cancer was about to steal our future, and indeed, my fears turned out to be well founded.  After just two of the planned eight rounds of the first chemotherapy (CVP), my disease wasn’t slowing down at all. A stronger combination chemotherapy (R-CHOP) replaced the first, and it did many things chemo is known to do. It deprived me of my hair, sent me on a couple of vacations to Hotel Hell, otherwise known as the hospital, gave me renal failure, pneumonia, tumor lysis syndrome and a variety of other side effects that I’d rather forget. It did not, however, stop my overachiever cells from trying to kill me. Half way through the regimen, my disease was still going strong.

With one setback following another, hope was sometimes hard to maintain, but my husband and I learned early to concentrate on small victories, one day, sometimes one hour, at a time.  And each day, we consciously tried to find something for which to be thankful.  Besides family, friends and my fabulous doctor, Hershey’s kisses always made the list.

Still, with my disease raging and my options dwindling, it seemed that lymphoma was determined to put me on the short side of the median life span. Clearly, it would take a mechanism different than chemo to stop my stubborn disease, and fortunately, the FDA approved one in the nick of time: radioimmunotherapy (RIT).  Remarkably, RIT is given in just two doses a week apart, and because it specifically targets cancerous B-cells and spares most healthy ones, side effects are minimal. Not only was taking it infinitely easier than chemotherapy, but it also yielded far better results. In September 2002, it successfully stopped the disease that had seemed so determined to stop me. Not only that, it propelled me to the far side of the median life span and, without further treatment, I’ve been living a full and healthy life for more than 7-1/2 years!
But treatment is only one component of cancer.  Its impact on our emotions and self-identities often lasts much longer.  Indeed, my body healed faster than my wounded psyche. For months after RIT, I felt vulnerable.  Uncertainty was my constant companion. Slowly but surely, I began to realize that cancer simply magnifies the uncertainty with which everyone lives, but that it can also be an opportunity to prioritize, make choices, drop the baggage and live like we mean it.  Soon, my timid, tentative steps on the path back to life after cancer became sure and strong. And I learned not to let cancer define me. Rather than being labeled a “survivor,” I’d much rather be simply “Betsy,” someone who has done many things in her life and who – way down on the list – once had cancer and doesn’t have it now.

Yet I often share my experience because when I was first diagnosed, I felt like I was all alone with a disease that no one else had, and I desperately wanted to connect with others.  To hear how lymphoma had impacted their daily lives. To learn how they and their families had coped.  And to understand how they had maintained their identities as cancer transformed them from “normal” people into patients. At the time, very few resources existed to help me find anyone who had previously walked in my lonely, uncomfortable shoes.

I began to keep a journal and found that writing forced me to identify and seek answers to my own questions. I never dreamed that I would write the book that I desperately wanted to read when I was first diagnosed, but I also never wanted anyone to feel alone again, and so my journal morphed into a book: The Roller Coaster Chronicles.

Soon after its publication in 2005, I began to hear from patients who wondered why they’d never heard of RIT or why their doctors discouraged it.  In 2007, a front page article in The New York Times explained “that cancer doctors, or oncologists, have financial incentives to use drugs other than Bexxar or Zevalin (the two RIT drugs), which they are not paid to administer.”

The words sound inflammatory, but oncologists work within a system with codes for reimbursement for each drug, service and procedure. Rather than creating new codes for RIT – which was a brand new class of medicine unlike anything else when it was approved – existing codes were used. In other words, the bean counters who determine reimbursement rates tried to put a square peg in a round hole which resulted in RIT having less earning power than other treatments.  Oncologists neither created the system nor can they change it.

I’ve been to Washington and written countless letters to Congress, and the reimbursement rates are better, but RIT – this treatment that takes only two weeks – will never be able to compete financially with the smorgasbord of treatment options.  Yet in the twenty years that have passed since the first clinical trials, numerous scientific studies have shown RIT to produce the highest percentage of complete response rates and the longest periods of remission for indolent, B-cell lymphomas.  But annually, eight years after approval, less than 10% of patients eligible for RIT have actually gotten it.  It is still largely ignored, misunderstood and underutilized for all the wrong reasons.

RIT exemplifies that many factors – besides the efficacy of any given treatment – can and sometimes do influence cancer care, and it serves as a perfect example of why I encourage patients to become active participants in their care and learn all their treatment options. In fact, if there is one thing I’ve learned from all the survivors I’ve talked with over the years – survivors of many types of cancer – it’s that many of them are healthy because they became their own best advocates and learned everything they could about all treatment options. Many were told they’d be “lucky” to be alive in a few years.  Others simply refused to accept the next recommended treatment and searched for different options. They talked with other survivors and got second or third or fourth opinions.  Every one who has done it knows that having cancer AND becoming your own best advocate can seem daunting, but it can also be life-saving.

Today, no one needs to feel alone. The voices of survivors have swelled to a mighty chorus, made up of unique individuals with unique circumstances and unique illnesses, bound together by the common experience of cancer.  May our stories provide nuggets of information to help you on your own journey, and at nearly twelve million strong, may our recoveries light your way with hope.