The number is 33

Thirty-three people in the US die of carcinoid/NET cancer, on average, every day. They are young people, old people, people in the middle of their lives. Some have children, some have grandchildren, some have spouses, some have living parents. Almost without exception, they leave unfinished lives–lives interrupted sometimes years before by diarrhea, difficulty breathing, the beginnings of heart problems…

You come, too.

They also leave behind 33 families, 33 sets of friends, 33 girlfriends, boyfriends, wives, and husbands. They create 33 more funerals, 33 more empty houses and apartments, 33 more empty rooms–and far more than 33 shattered lives. I know too well what it means to live in  a suddenly empty house, what it means to turn to tell someone a discovery and find they are no longer there–and will never be there again.

Keeping promises

I try not to think about what might have been. I try not to think about the plans we made. I try not to second-guess the decisions we both made both before and after Jane’s diagnosis. Doing any of those things too often is a road that leads to madness–and that is a road I cannot travel. I made promises to Jane that I want to keep. I made promises to myself that I want to keep. They are promises I cannot keep if I allow myself the luxury of that brand of insanity.

…33 girlfriends, boyfriends, wives, and husbands.

It is three days before the Greater Fall River Relay for Life. We have not raised the amount of money I wanted to see us raise this year. I know how important the money is we raise for that group. It has little impact on carcinoid/NETs research. But it has a real impact on the lives of patients as they wrestle with trying to get treatment, trying to find someplace to stay while they receive treatment, trying to keep a positive attitude as their hair falls out and their weight drops.

Caring for the orphans

I  care about all forms of cancer, but I care more about carcinoid/NETs more than the others. It is one of the orphans that too few people or organizations really care about–or even know about. A friend who lives with this cancer was asked to speak at an American Cancer Society event last year. She is, by all accounts, a powerful and impassioned speaker. She accomplishes more in a day than I do in a week.

I made promises to Jane that I want to keep.

But her speech did nothing to bump carcinoid/NETs closer to anyone’s radar. Thirty-three lives a day apparently do not make a splash big enough to be noticed, let alone remarked upon. Patients with carcinoid/NETs remain as faceless today as they were the day Jane was diagnosed. Because the symptom of their disease is not a lump or a strange weakness but endless diarrhea, bloating and gas–things that most people are embarrassed about–even most patients don’t want to talk about it. They hide their symptoms as best they can from both doctors and spouses.

What does it take to make 33 people matter?

That silence is deadly. Early diagnosis is the only way we have a hope of curing this monster. Finding additional treatments means finding money for research, but no one wants to be a poster child for non-stop diarrhea. Thirty-three people will be dead from it as a result by the end of the day today. Thirty-three people died yesterday. Thirty-three will die tomorrow and the next day and the next day and the day after that and the day after that…

They hide their symptoms as best they can...

When someone enters a crowded mall, a movie theater, or a schoolhouse and shoots 33 people, we pay attention–if only for a moment. Carcinoid/NETs does not even get a brief blip of attention. But more people will die slow, messy and agonizing deaths from it this year than will die in all those headline-producing mass shootings combined.

Falling behind the need

We are 89 days from the Boston Marathon Jimmy Fund Walk. We have a team in that event that walks exclusively to call attention to–and raise money for–carcinoid/NETs. I started raising money and recruiting walkers for that in February. We are far from where we need to be to reach our goals for both walkers and amount raised at this point.

Thirty-three will die tomorrow…

Missing our Relay for Life goal is a small thing. What we raise is less than a rounding error on what that event raises world-wide. But missing our goal for the Marathon Walk–as small as that goal seems when compared to what we spend on cancer generally–will have a substantial impact on carcinoid/NETs research. When even a Phase I trial can cost $2-3 million–and the total carcinoid/NETs research budget for the entire US amounts to less than $10 million–every dollar truly does have a substantial impact.

Come walk with us

Friday, I will walk in circles through the night to raise money for the American Cancer Society and its important programs. On September 21, I will walk from Hopkinton to Boston–all 26.2 miles–to kill the cancer that killed my wife. Others will join me at 13.1, five and three miles from the finish line.

…every dollar truly does have a substantial impact.

You come, too.