Talk is cheap. Research is not.

This last month has made me do a lot of thinking–about the past, about the present, and about the future. It is only in thinking about all three that one can plan the road ahead. We cannot change the past–but we must live within the conditions that past has created–even if we want to change those conditions in the future. We cannot control the future, but if we want to influence the future we must first conceive a vision of what we want that future to look like. We must live and act in the present moment–and those actions are shaped both by the past that has created the present and the future we want to bring into being.

Jane’s cancer has shaped my present. Helping find answers about that cancer will shape a large part–but not all–of my immediate future. Those other things need not concern us here because I created this thing for the solitary purpose of dealing with NET and Carcinoid Syndrome.

From this base we will launch a multi-pronged attack aimed at doing two things: doubling the amount of money spent on research into this disease over the next three years–and two if we can make it happen; and raising awareness, at all levels, of this disease, its diagnosis, and the best practices for its treatment.

In pursuit of the first of these goals I will undertake the following actions in tjhe next few weeks:

First, this afternoon I will mail a letter to the CEO of the New England Division of the American Cancer Society urging that organization to make a substantial increase in its funding of NET and Carcinoid Syndrome research. In the longer term, I will suggest they use the major NET foundations as conduits for analyzing and funding research proposals so that ACS does not have to develop expertise in areas where that expertise already exists.

At tomorrow’s Walking with Jane board meeting, I will propose the idea of Walking with Jane franchises for Relays for Life across the country, and suggest to ACS that they earmark the money raised by all WWJ teams be earmarked for NET and Carcinoid Syndrome Research. Two college groups have already approached me about doing this as part of their Relays.

Monday, I will return to Dana-Farber on Monday to do the paperwork to establish a permanent fund for research into NET and carcinoid syndrome in Jane’s memory. I also hope to meet next week with the Caring for Carcinoid Foundation about doing something similar with them.

After the first of the year, I will begin the planning and groundwork for the Crawl for the Cure  program I talked about here some weeks ago.

And finally, I will begin an extensive lobbying campaign–for which I will need lots of help–to get NET and Carcinoid Syndrome back on the agenda at NCI and in Washington.

Some of the above will serve to raise awareness of the disease as well. But we will need to do more than that.

November 10 I piloted a brochure on NET locally that met with some success. We will explore ways to get that material a wider audience. (If you want to see the text of the brochure, check out the About NEC section of this site.)

In addition, we launched the Press Kit section of this website in order to provide print media outlets with materials they can use on NET and Carcinoid Syndrome. So far only a handful of papers have used material from the kit, but we plan to continue to add stories to the site and continue to publicize its existence as a free resource. My hope is to recruit someone expert in broadcast media to put together a similar package for television and radio.

Finally, I hope to put together road presentations for both laypeople and medical professionals on NET. Patient and specialist conferences already exist, but these presentations will aim for a more general audience ranging from conferences of general practitioners to civic groups like local chambers of commerce, Elks Clubs, and the like.

My apologies for the length of this post. My web advisers say I need to keep these under 500 words–and this is way over. But I think it is important to outline the road ahead–even if it takes too many words.

“I don’t want cancer to define who I am,” Jane said shortly after her diagnosis. “I am more than a cancer patient.”

Jane stayed a human being throughout her battle with the disease. There were times she got angry–times she screamed at me out of frustration and impatience. Those were the times I knew I was talking to the cancer and not my wife. She asked me once about how I stayed so cool when she got angry at me–why I didn’t scream back. I said that to her–and she nodded and smiled. She knew what I was talking about.

Not that there were not times I wanted to scream right back at her. There is an anger and frustration on the caregiver side of the equation as well. But her burden was heavy enough and I would not add to it.

“I don’t want cancer to define who I am.” Those words echo down through the last 15 months–because I have so far failed to live up to them. Cancer did not define who my wife was–but it and grief have very much come to define me. When grief, or my struggle to come to terms with it, does not have me by the throat, my struggle to understand this disease and find new ways to raise awareness about it and fight it consumes me.

“I am more than a widower,” I want to scream at the world. “I am more than a small soldier in the war against this cancer.” But that is too often what I have become: a man lost in grief, a man lost in the fight against the disease that took half his soul away. I want vengeance–but my chance of achieving that vengeance is vanishingly small.

The problem with cancer–among other diseases–is that it does not just destroy the person who has it. It often destroys, in subtle ways, the lives of that person’s loved ones–as it has sometimes been doing with me.

I lost 20 pounds from the day Jane was diagnosed until the day we buried her on the hill next to her mother. But that was the merely one of the physical effects of those days. The mental and emotional damage was far greater. I no longer have the patience I once had. Frustration is a daily companion. Where I once was truly living, I am now–to quote T.S. Eliot’s Murder in the Cathedral–too often only partly living.

That has to change–or the cancer will have killed us both.

That does not mean this work is going away. I made a vow–and I keep my vows.

But it does mean I have to let go of vengeance and become mindful again. It means I must relearn patience. It means I must let go of anger and embrace love–not romantic love, but the love that is encompassed by the word caritas.

Then I will be more than a widower–more than a small soldier in this war: I will again be a human being–and truly alive.