Editor’s Note: Twice each year I write what I call my “tin cup” letter. In it I try to tell the story of NET cancer as seen through my eyes in hopes the people I send it to will be moved to help others avoid what happened to Jane and me 31 months and 13 days ago.
It is no easy thing for me to ask people for their help. Jane and I were both independent sorts who always exhausted every other option before asking for assistance. Even now, I prefer doing something alone to imposing on others for even the smallest things.
But NET cancer is so much bigger than I am that I have no choice but to beg help wherever I can find it.
NET cancer letter
Dear friends,
Thirty–three people died of NET Cancer in the US on December 10, 2010. My wife Jane was one of them. About 33 people have died of this supposedly rare form of cancer every day since. As I write this, that’s 30,723 human beings—each of whom had a story similar to Jane’s in many details—have died of NET cancer.
…we’ve barely scratched the surface.
On that same day, about 33 people received the news that they had NET cancer. About the same number have received the same news every day since: one dies, another learns they have it.
I know what it is to be in the room with your spouse when you hear that news—know what it’s like to hear a trusted doctor tell you he or she has never heard of the disease before. When a doctor tells you your spouse has breast cancer or lung cancer or prostate cancer, you know what that is and you know there are treatments that have been clearly shown to offer hope for a cure. You are worried, you are anxious, but you have hope.
We’ve made progress since Jane’s death…
When your doctor says he’s never heard of the form of cancer your wife has you get this awful feeling in the pit of your stomach you know must never reach your face. You are there to be her rock no matter how rocked you are by what you have just heard.
When the first oncologist you meet with tells you she has never seen a case of this cancer before, although she has heard of it, there is not much reassurance there for either of you. When she says there is no cure for anything beyond Stage I of that cancer—and you all know your wife’s cancer is well beyond that—you all know you all want to cry, but that none of you will because you are all determined to be strong for each other. There are treatments that can slow the progression of the disease—and if you can just slow the disease down enough maybe someone will develop a way to cure it in the time those treatments will buy you.
Jane’s story does not have a happy ending…
Jane said that day she wanted to be the first to beat NET cancer—that she would do whatever it took. In the meantime, she said, she was not going to think about dying of cancer: she was going to live with cancer. And she did just that.
Jane’s story does not have a happy ending—at least not for her—at least not yet. She died in my arms just before 8 p.m. in the ICU at Brigham & Women’s Hospital in Boston. Her last breath went into my mouth and nostrils and filled me with both incredible love and incredible anger. We had plans. We were six months from retirement. That was all dust and ashes in my mouth. But I knew what I had to do: I had to help find a cure for the cancer that took away all our dreams and plans.
…if you can just slow the disease down enough…
We’ve made progress since Jane’s death: the Dana-Farber Cancer Institute set up the Program in Neuroendocrine and Carcinoid Cancer; researchers have developed an animal model for the disease; other researchers have managed, finally, to grow NET cancer cells in vitro so that we can study the disease outside of a patient’s body; Uppsala University in Sweden has scraped together the money for a Phase I trial of a virus that eats NET cancer cells in the laboratory; another team in the US has developed a similar virus that kills many other forms of cancer as well; Jane’s case has led to a better understanding of how NET cancer affects the heart and helped establish better protocols for when and how to deal with that when it happens; scientists are developing a genetic profile of NET cancer patients and comparing their DNA to that of those who do not have the disease; patients with liver involvement are being treated with liver embolization techniques that knock those metastases back on their heels…
You are there to be her rock no matter how rocked you are by what you have just heard.
But a cure, even if the Uppsala Virus or the Seneca Valley Virus works in humans as well as it works in the lab–and the trials go flawlessly–is still years, and tens of millions—perhaps hundreds of millions—of dollars away.
Since May of 2011 Walking with Jane has generated nearly $170,000 for cancer research in general—and NET Cancer in specific. We’ve generated another $5000 for academic scholarships for students planning to either teach science or enter the medical field. I’ve walked the length of the Boston Marathon for the Jimmy Fund twice to raise money for NET cancer research and am currently training to do so again. Over the course of those three walks I have raised nearly $26,000 so far. But in the face of the millions of dollars it will take to make Jane’s dream of beating NET cancer real, we’ve barely scratched the surface.
…one dies, another learns they have it.
That’s why I’m asking you today for your help. The majority of general practitioners still have never heard of NET cancer; we still have no cure for the disease; we still can’t reliably detect it much of the time; we don’t really even know how many people have it and don’t know it.
Please, do what you can.
Pax et lux,
Harry Proudfoot
Chairman, Walking with Jane
P.S. I promise not to share your name and address with anyone. Nor will I contact you for fundraising purposes more than twice a year.
Walking with Jane, Inc. is 501(c)(3) non-profit charitable corporation
organized under the laws of the Commonwealth of Massachusetts.
