Learning from Tragedy

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.” 

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 oncologist 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.

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.” 

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 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.

The Question I Hate to Ask

In some ways, I am not like a lot of people.  Most people don’t respond to the death of their spouse by starting a national organization to fight the preventable disease that killed him.  I know why.  It’s not easy and it's scary: it’s hard to figure out the right way to attack the problem, to work with no income, and – for me – to take time away from my daughters who were just nine and twelve when their dad died.  ECAN is now more than six years old and we’ve survived those initial hardships. But there is one thing that is still very hard for me.  And in this way, I am like everyone else.  I hate to ask people for money.  If I were better at it, ECAN would be much further down the road.  I am always amazed at the generosity of our supporters and so grateful to those who are willing to reach out to others to support this fight.  Everyone who helps ECAN succeed works hard to raise the funds we receive.  So it may come as no surprise to you that ECAN’s budget would just about equal last year’s income of the Susan G. Komen Foundation.  That is, if you take away six zeroes.  Our budget is literally a million times smaller than the Komen budget.  That might be fine if there were a million times more breast cancer patients than there are Esophageal Cancer (EC) patients in the U.S.  But that’s not the case.  About 13 times more people are diagnosed with breast cancer in the U.S. than with EC each year. But the resources spent to fight breast cancer far outpace anything available to battle Esophageal Cancer – times millions.  I want to be clear.  I respect the success of the pink, Komen and breast cancer causes. I am grateful that my mother is a breast cancer survivor.  People for whom I have cared deeply have been lost to this terrible disease.  And, as a woman, I am proud that my gender takes care of its own.  But we take care of others, too.  It is time that we do more to save the lives of people like my husband and the thousands of others like him who don’t realize they are at risk for Esophageal Cancer until it is too late.  And once they are diagnosed, doctors have so few tools to battle this disease because, for each person who dies of Esophageal Cancer, we spend less than $1,800 on EC research each year. For each of the nearly 18,000 patients diagnosed with this devastating disease this year, on average $89,000 per year is spent to care for them.  Even more upsetting, most of these patients – more than 80 percent – will not survive five years.  Many – like my husband Monte – will not even survive one year after diagnosis.  Just think what would happen if we could invest more money in research and prevention.  Surely we would ultimately spend less and have more success at preventing, detecting and curing Esophageal Cancer. We would save many lives. That’s why I was more than thrilled when an Esophageal Cancer survivor recently offered to fund a matching challenge to help ECAN raise money.  This grateful and philanthropic man offered to match every contribution made to ECAN in September dollar for dollar up to $25,000.  Even more, if we can raise the full $25,000 this year, he promised to fund another match in 2016, as well.  All together, that would total $100,000 to fight Esophageal Cancer! What could ECAN do with $100,000?  We could put more energy into fighting for the equitable research funding our patients so desperately need. We would push for the dollars needed so the findings of The Cancer Genome Atlas (TCGA) project on EC that ECAN fought so hard to make a reality could be translated into actual targeted therapies that could save patients’ lives! We could hire staff to help Esophageal Cancer patients and their families access the benefits and assistance they need to make it through one more week of grueling treatment or recovery. With $100,000, more communities would be sharing that life-saving message that Reflux Disease is No Laughing Matter and Heartburn can cause Cancer and hosting events where patients could undergo free, unsedated scopes to determine if they are at risk. ECAN could undertake so many important projects if only we had the resources.  I know that.  Still, it is hard for me to ask you to dig into your pocket.  Every day, I choose to work to keep ECAN’s mission alive. That is my decision. Now you get to make yours.  But I beg you to do it soon – our $25,000 matching challenge ends on September 30th.  We still have a long way to go to meet the goal.  Please consider how much it’s worth to you to ensure that there continues to be an organization: fighting in support of Esophageal Cancer research funding and helping to make your voice heard on Capitol Hill?  devoted to warning members of the public about this preventable cancer that most people only learn about once it is too late – and doing it by petitioning the FDA to get warning labels placed on anti-reflux medications and recruiting celebrities to reach a broader audience? dedicated to providing the most up-to-date information about this devastating disease and how to address it? As a farmer during the Great Depression, my grandmother knew about making something out of nothing.  It’s pretty much the way she raised all eight of her kids.  But even my Grandma knew there’s only so much you can do without resources.  She taught me an old adage that just may decide ECAN’s future: “Talk’s cheap.  It takes money to ride the train.” Please help us keep this train on the tracks – the ride we need to take is very long. But we are audacious enough to believe that a world where nobody has to die of Esophageal Cancer is a destination we can reach.  And though it’s hard for me to ask, it is clear that we can only get there with your support.  Thank you for your commitment to this fight and your consideration.

A First

It has been just over three years since a small, but dedicated, group of individuals met in a conference room at Sinai Hospital in Baltimore, Maryland to start what we hoped would be a movement to advocate for changes that would fight Esophageal Cancer.  We knew awareness about the link between Heartburn and Cancer would be key to our success.  We knew so many more people needed to be screened – to be checked – for EC or its precursor, Barrett’s Esophagus.  We knew that many more resources needed to be available to researchers who are working to effectively fight this disease once it’s diagnosed.  We knew we were committed to making the change happen.  We just didn’t know exactly how we would do it.

In the three years since ECAN, the Esophageal Cancer Action Network, was founded, we have figured out some ways to do what we set out to do.  And we’ve been successful at many of the efforts we have tried.  But what we know now and knew then is that it will take so much more than we can do in three years – or five years – or maybe even 20 years – to accomplish what we set out to do.  But we do believe we can make it happen in our lifetime.  We want to live to see the day that nobody has to die of Esophageal Cancer.

And so we are using all the tools we can to reach that goal.  This blog is one of those tools.  We inaugurate our “Check It Out” blog now in the hope that this tool will be effective to help us spread awareness and to help us grow our Network.  The more people are talking about the link between Heartburn and Cancer and the importance of early detection, of getting “checked,” the more likely we are to reach that day we are working toward.

We are proud of another tool we now have available.  ECAN has just released its Guide for Patients  – a comprehensive, but easy-to-understand explanation of Reflux Disease (GERD), Barrett’s Esophagus and Esophageal Cancer.  We created the guide with input from about 100 doctors from around the country and now more and more doctors are contacting us because they endorse our Guide for Patients.   They tell us that they believe it will help patients speak with their primary care doctors in a way that makes it more likely that they will be screened when screening is called for.  One doctor wrote to me to say that he was sure it would save lives.  That is our greatest hope.

So this is your chance – be a life saver! Share this blog – or at least the link to our Guide for Patients  – with those people you care about.  Let them know that the heartburn they feel may not be benign – that it could be deadly; that if ignored, the damage it's causing may not be detected until it is too late.  We can save lives.  Information is the best tool we have right now.  It's in your hands.  Please use it.


Do not let what you cannot do interfere with what you can do.
- John Wooden