Failure and success: Walking with Jane in 2011

Planning against failure

Goals, as I used to tell my students, are meaningless without a plan for how to accomplish them. On the flight back from Seattle on New Year’s Day in 2011, I looked at the two general goals I’d arrived at for my personal NET cancer campaign and crafted what I thought was a workable plan to make those things happen. From my perspective, failure was not an option. I’d seen too much of how NET cancer killed to think otherwise.

…I was not feeling very successful.

Unfortunately, no plan, no matter how well crafted, survives first contact with reality. Things that seemed self-evident to me did not share space in many minds outside my own. There were huge bureaucracies involved, as intractable in their beliefs as a fundamentalist religion.

Unexpected sources of failure

Worse, I underestimated the impact of the other things in my life on the time and energy I would have for this new endeavor. I knew I had teaching commitments through the end of June–with all the reading and writing and grading that entailed. I had adjusted the pace of my actions to account for that–or so I thought.

…failure was not an option.

But what I had failed to consider was the strength of my own grief and how that would have an impact on every aspect of my life. People who have never experienced profound grief have no idea how pernicious an emptiness that creates. At first, you feel nothing at all. It’s eerie to see people around you in tears, charged with grief, while all you feel is guilt because you feel nothing at all despite having lost everything that had any meaning for you.

Failure to understand

Six to eight weeks later, after everyone else has moved on with their lives–and think you have, too–the pain descends like a fire curtain across a stage. You wander aimlessly from room to room, burst into tears when you enter the grocery store, wake up and stare at the ceiling for an hour trying to will yourself out of bed. Sometimes, you read the same sentence over and over again, but can’t decipher what any of it means. It is all a jumble of senseless words. You sleep only when exhaustion claims you–and then only until the first painful dream arrives.

At first, you feel nothing at all.

You go to grief groups, seek counseling, take part in programs designed to help you recover. You discover everyone’s grief is different–as are their methods of handling that grief. Slowly you come to understand that grief never really dies–never really goes away–you just get better at coping with it–at putting on a brave face for the world that believes you do, eventually, “Get over it.”

Accepting failure in times of grief

I was not the teacher I wanted to be the last year of my career. The first half of that year was devoured by Jane’s illness; the second by my grief. I know I graded papers and prepared lessons. I know I delivered the lectures and led the discussions. But I remember very little of any of it. There are emotional moments–like the morning I came back to work–that I will never forget. But the day-to-day work that was once my joy vanished in the fog of grief.

…the pain descends like a fire curtain…

Even the discussions that led to Walking with Jane are pretty foggy. I know I determined I’d walk for all of the Relay for Life–and that people decided I needed to be saved from myself lest I kill myself in the process. I remember the day Bonnie and Morgan and I watched the Walking with Jane logo roll out of the printer in its final form for the first time, but I have no memory of how the shirt the logo went on got designed.

External failure

I know I started lobbying the American Cancer Society about the lack of resources for NET cancer on its website that spring. I know that, as I write this, more than six years later, nothing has changed on that front. We now have more NET cancer patients in the US than brain cancer or ovarian cancer patients, but you’d never know that to look at the ACS website. And you’d never know it from the amount of money ACS spends on researching the disease.

I was not the teacher I wanted to be…

My plan was to get copies of Is it IBS? Or Is it NET cancer? into doctors offices across the Southcoast of Massachusetts that year. We got them to many in Greater Fall River, but they rarely went further than the hands of the doctor we put them in. No one reported copies finding their way into waiting rooms. They have become a staple in every mailing we do looking for sponsors and donors, but it’s not enough. I have a lead for funding a larger medical mailing campaign. I just need the time to put it together.

Failure on line

In June of 2011, we made our first foray into social media with a Facebook page. That September, we launched this webpage with the help of Carissa Broadbent and Mike Goeppner. They did the heavy lifting–I did the writing. The page initially had an online support group for patients that crashed and burned pretty quickly. It attracted lots of spam, but no patients–no audience. Today, there are several such private groups on Facebook that we’ll talk about in detail later in the month.

…you’d never know that to look at the ACS website.

For the first few months, I made daily posts to the website. We attracted few patients in those days. Part of it was I wrote too much about grief and the end of Jane’s life–and not enough about NET cancer. Part of the reason was there was still so little to write about the disease. But part of it was my grief dominated everything. The experience was frustrating. Pieces on NET I expected to do well, vanished into the ‘net without a trace. Pieces on Jane’s death generated audience some days and not others. Pieces on my grief suffered a similar fate.

Learning from failure

I knew the internet would matter in raising awareness. I knew social media would be a significant part of that effort. But I came into that part of the campaign with no real understanding at all of how any of it worked. I understood the theory well enough–but the differences between theory and reality were–and are–huge. I’ve gradually come to the conclusion that anyone who claims to be an expert on social media and how to use it is trying to sell you a course or a book. Six years in, large parts of it remain a mystery to me.

…I made daily posts to the website.

Print media should be less of a mystery to someone who taught journalism for parts of four decades with occasional stints as a reporter and editor. But getting the mainstream media to pay attention to NET cancer has proven an equally daunting task. In the fall of 2011, we recruited a group of my former students, many of whom were working journalists, to put together a package of stories for the local, regional and national media for NET cancer Awareness Day. Those stories are still a part of our press kit, but only appeared in four publications, despite our best efforts.

Success from failure

We’ve had better luck in recent years getting stories into the local press in the Greater Fall River and New Bedford areas. But those stories have only come about when attached to some other event–like my annual 26.2 mile hike from Hopkinton to Boston as part of the Boston Marathon Jimmy Fund Walk. That’s true of most coverage of NET cancer. The few stories we see are in local media and rarely make it to the national stage even briefly, let alone have an impact on the national consciousness.

I knew the internet would matter…

That September, I’d raised about $4,500 for NET cancer research at the Dana-Farber Cancer Institute through the Jimmy Fund Walk. I’d expected the $300 minimum would prove a stretch, but I first saw the potential power of social media the night I posted my plans to do the Walk. Within two hours, I’d raised almost $1200. More would follow from that and a small direct-mail campaign based on our Christmas card list. I was stunned. Between that and what we had raised at two Relays, we’d raised just over $7000 for cancer research and patient support. And we’d had no idea what we were doing.

Rising from the ashes

Based on that, I approached Dana-Farber about starting a NET cancer fund in Jane’s memory, pledging to raise $20,000 a year for five years. In its best year, The Walking with Jane Fund created just over $88,000 for NET cancer research, though the average is closer to $60,000. That $100,000 pledge  at the end of 2011 meant the Program in Neuroendocrine and Carcinoid Tumors–as it was called at the time–could add Jennifer Chan to its full-time roster.

Within two hours, I’d raised almost $1200.

As the first anniversary of Jane’s death approached though, I was not feeling very successful. Yes, we’d set down some kind of foundation to build on, but too many things had crashed and burned that I thought should have been easy to accomplish. ACS was proving intractable. The website was struggling to find an audience. The Facebook page was struggling to find an audience. And despite the belief that a year of grief resolved everything, I felt even more miserably alone than when I’d started.

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.

I hobbled across the finish line at my first Jimmy Fund Marathon Walk. Failure was not an option that day. I’d vowed to finish the course if I had to crawl most of it. It was a nearer-run thing than anyone at the time knew.

Posted by walking with jane on November 5, 2017

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