A Tragic Beginning

On this day ten years ago, I sat in the waiting room mostly ignoring the bubbly chitchat on the televisions mounted on the walls. Until the banter was interrupted with coverage of the horrific massacre of students at Virginia Tech. It was more than I could absorb on this day.

It was the day I would discover that my husband had a cancer that is almost always fatal. As the campus tragedy unfolded, I was escorted back to the recovery room where our gastroenterologist and friend took on the unenviable task of telling my husband and me that Monte had esophageal cancer. As he explained what he had seen during the upper endoscopy, I started to ask a question, “OK, …” but he interrupted, ”No, this is not okay.”

We could not fathom then how not OK things were going to be. But that was not the approach my husband took. As we left the hospital parking lot, I drove on autopilot, feeling stunned and overwhelmed as my husband said, “This is just going to make our family stronger.”

“As long as it doesn’t make our family smaller,” I said, voicing the fear that was consuming me.

The radio continued updates on the terrible tragedy unfolding in Virginia. My heart broke for the families of the 32 students and instructors killed by an armed, mentally ill student who would turn a gun on himself in the end. In a split second, the lives of those lost and those who witnessed the tragedy were irrevocably altered. I was overwhelmed with sadness for them, even as I was numb with the fear of the unknown my family faced.

I struggled to fight back the tears as the story of my husband’s diagnosis desperately spilled out of me when I saw the mother of one of my daughter’s friends in the grocery store later in the day. Her response, “That’s no tragedy. What happened in Virginia today was a tragedy.”

Facing a Challenge, Not a Tragedy

As I look back on that day ten years ago, I know that what we learned that day did bring tragedy to my family. But on that day, I did my best to adopt the outlook that we faced not a tragedy, but a challenge to overcome. My husband maintained his powerfully positive outlook throughout the excruciating battle he waged for the next 10 months. And I kept hope in my heart as I searched for some medical miracle that might save my husband from the fate of nearly all patients diagnosed with Stage III Esophageal Cancer in 2007. Until the day came when we could no longer have hope.

We waged war on the 6 cm. tumor my husband named Terrible Terrence: Months of chemoradiation therapy, drastic surgery to remove his esophagus and pull up his stomach to create what we called his stomaphagus. Then the discovery that the cancer had spread to his liver, lungs, spine, pelvis and ribs about two months after surgery. More treatments, this time with new targeted therapies – until a blood clot formed near his chemo port.

It wasn’t long before a PET scan showed that the tumor in his liver had doubled in size. When my husband’s oncologist had to share that devastating news, Monte’s response was to tell his doctor that he realized it must have been very hard for her to have to tell us this news. Then Monte looked at me with tears in his eyes and told me he was sorry, as though he had let me down.

What We Lost

Monte’s death was a tragedy for all of us who knew and loved that man who lived his life with genuine and generous concern for others. It was a tragedy for him as the father of our daughters, just nine and twelve at the time of his death. He and the girls were robbed of the years of love, laughter, mentorship and admiration that they would have known. He and I were deprived of the love we had waited so long to find – he was 50 and I was 35 when we married, both of us for the first time. We worked hard over 14 years of marriage to create a partnership that brought us fulfillment, happiness and a family we cherished.

The girls and I have faced down lots of grief, emotional pain, doubt and sadness over the past nine years since we lost Monte. But I am very proud of the young women they have become. Mara once told me that she believes she’s a better person because she lost her dad. “I would never have understood how lucky I am to have had such a great father; I would have taken it for granted. But now I know. I am a lucky person.”

What We Learned

The news we received ten years ago led to many valuable experiences. We learned lessons about the power of kindness. Our community wrapped its arms around our family with an outpouring of generosity and love. We had more meals than we could eat, my kids always had rides to their lessons or activities and we were provided with more emotional support than we ever could have anticipated. Our family and friends stepped in to help keep our home running as more and more of my time was devoted to Monte’s care.

In the final weeks of his life, Monte was moved – sometimes to tears – by the visits, calls, letters and cards that expressed love and admiration from friends he had known throughout his life. He told me that in many ways those were some of the best days of his life. Not many of us are able to hear the praise that may only be expressed at funerals. It was an outpouring appropriate to the life he lived.

That’s why when people tell me that my work with the Esophageal Cancer Action Network (ECAN) is a great tribute to my husband, I have to disagree. Monte didn’t need ECAN as a tribute. All those folks who knew and loved him so well are the living tribute to my husband – and the best memorial to his spirit.

But I know that without the terrible news we received ten years ago, I would never have begun ECAN. And since the pursuit of ECAN’s mission has been my life’s mission for most of the past ten years and will be for as long as I have something to contribute, I have to believe that ECAN is another thing of value set in motion ten years ago.

None of us can change the past or control the future. We can only do the best with the cards we’re dealt. Monte was a beautiful example of a person who played his hand with grace and courage. And, even though our tragedy did make our family smaller, I believe that in some important ways it also did what Monte predicted, it made our family stronger.