An early start

When I was five, my Grandfather sat me down on the back porch of his home in the Ben Avon borough of Pittsburgh and explained the process of setting goals and planning to me. He put it in a child’s terms so I could grasp what a powerful idea it was. Since then, I’ve never been without a set of goals and a set of plans for how to achieve those goals.

‘God helps those who first help themselves.’

That concept got a booster shot when I started working for Sears my last year of high school. It was, then, an organization that took great pride in planning. It was what set them apart from other stores and was a major reason for their success. The day they abandoned their commitment to setting goals and planning is the day they began their fall from the pinnacle of the retail world.

The original goals

On the plane back from Seattle on January 1, 2011, I began thinking about the organization that would eventually become Walking with Jane. My primary goal was to support research into–and raise awareness of–carcinoid/NETs. Jane died because too few doctors had ever heard of this form of cancer. Jane died because we were not spending enough money to fund much in the way of research over the 40 years since the government had decided it was not cost-effective to spend money on it.

…I’ve never been without a set of goals…

But having a goal or two means nothing without a plan for reaching those goals, so I spent that flight thinking about ways an English teacher with minimal medical background could have an impact. I’d written a pamphlet about the disease on my way to Seattle. Now I needed to figure out how to market that–and how to get it into the hands of people who needed the information that pamphlet contained. I needed to figure out how to raise significant amounts of money to fund research. And I needed to know a lot more about carcinoid/NETs and the fight against it than I did.

The power of ignorance

Nearly everything about that initial plan came out of my own ignorance and inexperience. In some respects, that was a bad thing. But in others it was a good thing: I didn’t know what was supposed to be impossible; I knew nothing about the politics of cancer research; I knew none of the things that might have caused me to throw up my hands and walk away in despair. I saw only a set of problems that needed to be solved.

…I needed to know a lot more about carcinoid/NETs…

I took most of the month of December off this past year from my work on carcinoid/NETs. I was physically, mentally and emotionally exhausted. It was not just the effort against carcinoid/NETs. I lost my father to a stroke in August. I lost one of my oldest friends to breast cancer in January. I lost a niece to a long illness in August. Friends lost mothers, fathers, wives, husbands, and children. Friends and family members were diagnosed with a plethora of serious, sometimes fatal, diseases. My father-in-law was diagnosed in November with advanced prostate cancer that has spread to his bones.

A chess lesson

There is a concept in chess called “the overburdened piece.” It is a piece that supports so many other pieces and positions that it becomes the center of attention for both players–often with fatal consequences for the game of the player that piece belongs to. There were simply too many demands on my mental and emotional resources by the end of the year–and something had to give.

I didn’t know what was supposed to be impossible…

I compounded those issues by beginning to write a book on my personal grief process. That meant going back to the beginning and reliving the last months of Jane’s life. I thought I was ready for that. And I am. But the process is proving far more difficult than I anticipated. What I thought I could create a draft of in a month is less than a quarter completed. The writing has been good for me emotionally but has swallowed great chunks of time and psychic energy.

Waking up on Christmas morning

In addition, I decided not to go to Seattle for Christmas this year, given my father-in-law’s fragile health. That meant spending Christmas for the first time since the year before Jane’s death in the house she and I built together 20 years ago. I was ready to reclaim that part of my life, as well–but again, there was a steep emotional price. I woke up in our bed on Christmas morning, had our traditional Christmas morning breakfast, and prepared to welcome her father and sister for Christmas dinner.

I thought I was ready for that.

Four years and 22 days after Jane’s death, carcinoid/NETs still plagues more than 110,000 people in the US who know they have it–and God only knows how many more who have it and don’t know the name of the cancer that is killing them. We have made progress on many fronts: We know more about the disease than we did on the day Jane was diagnosed; we have new drugs approved for use against it; we have more drugs and treatments in trials; and ideas for new treatments waiting in the wings for funding.

Goals ahead

I spent last night thinking about what the goals need to be for the year ahead. I thought about how to reach those goals and what will need to happen for us to make those plans work. Over the next few days, I’ll unveil those plans and ask for your help in making them happen–not just with your money but with your time and effort.

 I was ready to reclaim that part of my life…

I put out a couple of short posts on Twitter and Facebook the last two days. The first was a wish that this would be the year we find a real cure for NET cancer. The second was to remind all of us that it takes more than prayer to make things happen in this world–it takes our sustained effort.

As my grandfather used to remind me with some frequency, “God helps those who first help themselves.”