A barn filled with poop

Under normal circumstances, I’m a positive and optimistic person. I have to be to take on the things I assign myself. I’ve built two scholastic newspapers from scratch, worked to reform both an English department and, eventually, an entire school. I’ve worked with patients and doctors on a form of cancer that no one knows much about and that for decades no one–other than those doctors and patients–cared about.

It makes a better reality.

Jane used to claim that if I walked into a barn filled with poop that I would immediately smile because, despite the stench, I would assume there had to be a pony in there somewhere. But staying positive has become increasingly difficult over the last several months. I am increasingly angry and increasingly cynical at times, and I know from experience those are bad signs for me–and for those around me.

Mounting losses on the cancer front

In late January I lost one of my oldest friends–a person who figuratively had saved my life more than once when we were in high school–to triple negative breast cancer. Periodically, breast cancer gets held up as an example of a cancer we have on the run–and a cancer that we have used a working formula to raise awareness and research dollars about. And there are forms of breast cancer that we do seem to have a handle on.

…there had to be a pony in there somewhere.

But triple negative breast cancer is not one of those. It comes back–and when it does it comes back with a cruel vengeance. My friend died less than ten months after her recurrence was discovered–and barely a year after she was declared “cancer free.” We’ve poured billions of dollars into breast cancer research over the last four decades and it still kills too often.

Lessons in pain

Sidney Farber began his work on childhood cancer close to 70 years ago–and again, we’ve made great strides against it. Eighty percent of those diagnosed used to die of it; today, more than 80 percent survive. But I watched a young boy die of one of those cancers this winter, watched what that death did to his family. I see what it is doing to them now–months after his death–and know there are scars there that will never heal.

In late January I lost one of my oldest friends…

Then I look at Jane’s cancer and our comparatively puny efforts to make a difference. No one is spending billions to find a cure for it. No one is spending even hundreds or tens of millions. If, after 40-70 years of highly financed research done by thousands of the best minds in the country, we still have no reliable cure for all forms of breast cancer and/or all forms of childhood cancer, what chance do we have of finding a cure for carcinoid/NETs?

Cancers without dollars

Until recently, we spent less than $5 million a year on this form of cancer. This year, we may make it to $10 million for the first time. There are likely less than 500 researchers working full-time on understanding the disease–let alone killing it. There are days I feel like I am in a real life version of Mission Impossible–and  that the secretary will shortly disavow all knowledge of our actions because the operation failed–that this mission really will prove impossible.

…what chance do we have of finding a cure for carcinoid/NETs?

I write fundraising letters and posts for the Internet–but there is only rarely a response. I organize fundraisers, but the most money any of them has ever brought in is still less than $5000. People tell me what I am doing is making a difference, but I don’t see it–not very often.

The stuff of nightmares

Instead, I see pictures of the patients I have met and hear the stories of their suffering and struggles. I remember the day Jane was diagnosed, the day she died–and every moment in between. I remember how we both tried to pick each other up on the days it all got to be too much. And I know the patients I meet and their families are going through precisely the same thing because, while we have learned much these last four years, too little has changed.

…I don’t see it–not very often.

So I am frustrated and angry and jealous of all those better-funded cancers. I am bitter because when I say “I love you” to my wife when I go to bed at night, the only answer is in my head–and it is the sad, post surgical rasp that is the only voice I still remember that belongs to her. I want, in those moments, to run as far from all of this as I can. I want to crawl into a bottle or a syringe or a bottle of pills and never come back.

No one fights alone

I won’t do that, of course. I’ll keep doing all I can to fight this disease–all I can do to kill it. But this is a bigger fight than I can manage some days, even with lots of help. I’ve seen too many deaths and too many people who hurt–and it isn’t getting any easier.

…too little has changed.

So if you can help, please do. We need walkers and golfers and runners, donors and marketers, people who feel and people who care. There is a phrase that has become my mantra: No one fights alone. It’s a great slogan. It makes a better reality.