The NET cancer zebra strikes
Jane fought NET cancer for more than 30 years, all but the last four months of it not even knowing the name of the disease that was killing her.
…in NET cancer research, $125,000 is significant…
For the last 21 years three months and eight days of that struggle I fought the battle right along with her. We thought we were fighting irritable bowel syndrome for most of that time because that was what her doctors called it. But even had we known the thing’s true name there was very little we could have done about it. Unless detected very early–almost before it becomes symptomatic–there is no cure for NET cancer–only a long series of delaying actions that can alleviate the symptoms but not offer any hope for a cure.
And eventually, even those measures fail. The diarrhea becomes constant, the insomnia leaves the patient ever more exhausted and, at last, death arrives at the hands of plummeting blood pressure and depressed respiration.
The NET cancer war continues
For the two years since Jane’s death I have continued to fight the disease that killed her. I spend my days planning ways to raise money, doing research on the ongoing scientific studies of the disease, and trying to put that research into the common tongue so that those whose bodies are still fighting the disease have access to the latest that is going on in laboratories around the world.
In a corner of her office is a walking stick…
Monday was hard for me. It was the second anniversary of Jane’s death. My friends distracted me with phone calls and emails and flowers throughout the day, but I still found myself wandering the house in a haze for most of the day. And going to bed without her that night was harder than it has been for weeks–perhaps months. There is nothing worse than losing the partner you have shared everything with almost from the day you met.
It is one of the things that drives me in this work against NET cancer. I not only want to spare the patient the pain of this disease and its endgame, I also want to spare the spouse the hideousness that comes afterward. There is a quality of silence in this house at times that is like nothing else I have ever experienced–and that I lack the words to even begin to describe.
Remembering Jane’s NET cancer impact
But today was also hard–albeit in a very different way. This morning I drove up to Boston to drop off the last check of the year for the Walking with Jane Fund for Neuroendocrine Cancer at Dana-Farber. For the first time since Jane’s death I sat down with Jen Chan, who was Jane’s oncologist. We shared memories of Jane and the work we have both done since and wept for the inspiring human being we had both lost.
There is nothing worse than losing the partner you have shared everything with almost from the day you met.
In a corner of her office is a walking stick I gave her last year as a memento of her work with Jane and the help she has given to the fight against NET cancer. She told me it resides there purposely so that when she is at her work table every time she looks up it is there to remind her of Jane and why what she is doing is important.
Another NET cancer battle
But none of that is what made today hard. Rather, it was something I learned while I was at Dana-Farber. Last summer I had a chance to tour the mouse lab where work was underway to develop a viable animal model for NET cancer. The work was going well–and still is. But that work is in jeopardy. The grant under which that research was being done will shortly run out–and the funding group has decided not to renew the grant. Now Matt Kulke, Jen Chan, the other researchers, and the development office are scrambling to find the funds to keep that program going.
I know this is an awful time of year to ask people for money…
As cancer research programs go, this one is fairly cheap: about $125,000 a year. For people doing research on breast cancer or lung cancer, that amounts to less than a rounding error. But in NET cancer research, $125,000 is significant money. It is more than the iCancer folks have raised so far toward a Phase I trial of a virus that is a potential cure for NET cancer. That $125,000 is a mountain of money for a disease that will not see $4 million spent on it total in the US this year.
A NET cancer plea
I know there are some people who dislike all uses of animals for testing. I even agree with them when it comes to their use in testing cosmetics, deodorants and other bits of silliness in popular culture, But animal models in serious medical research are a practical necessity. Many of the treatments we have for many types of cancer–and other otherwise fatal diseases–have come out of drug tests using animal models initially. The mice involved are bred specifically for this kind of thing. And the absence of animal models for NET cancer has reduced the pace of research on the disease from that of a snail to that of the slowest moving glacier. If you know someone who has survived breast cancer, thyroid cancer, leukemia–or any of dozens of other cancers–then you know someone who owes his or her life to a bunch of hairless mice or zebra fish.
–there is no cure for NET cancer–
Part of the money I took up there today will help replace the lost funding for this vital piece of NET cancer research. But that amount will barely scratch the surface of the need. I know this is an awful time of year to ask people for money–it is part of the reason I didn’t send out a general mailing this month. But if you have read this far and you happen to have some money burning a hole in your pocket that you don’t know what to do with, Dana-Farber’s NET cancer program could certainly put it to good use.
