Worst times for Walking with Jane

I was seriously thinking about shutting this website down one year ago this week. It was sucking up time and energy I thought might better be used elsewhere. Thirty months after its launch, the site had averaged less than 15 views a day for the preceding three months, and barely 18 a day over the previous year.

…someday–soon–NET cancer will die.

The reason I’d started the site was I saw very little information on carcinoid/NETs that was written in a language regular people could understand. I remembered my own frustration when Jane was first diagnosed. I wanted to help other people who suddenly found themselves in that same boat. I lamented the lack of support groups for both patients and caregivers. There were no online groups I could find and face-to-face groups meant a drive of two hours or more even in New England.

Bad times on walkingwithjane.org

Among the first things we launched was an online forum that had immediately become a spam magnet. In the three months it was up it attracted over 3000 posts–none of them from patients. Only two were not ads for something with no connection to NET cancer–and one of those was from me. Since then, a number of support groups have come to my attention on Facebook, all hidden behind strong privacy walls and patrolled constantly by administrators to keep them that way.

I was seriously thinking about shutting this website down…

But initially the main site seemed to do pretty well. Our first five months attracted over 6000 views. But the fall from grace thereafter was steady and implacable. It didn’t seem to matter what I wrote about or what links we provided or how much I shaped each piece to SEO standards. I read everything I could about what made a website popular. None of it made much difference.

Worst times on walkingwithjane.org

By last February, I was ready to hang it up. I decide to give it one last push. If the March numbers did not show significant improvement, I would shutter walkingwithjane.org and rethink what I was trying to do.

…initially, the main site seemed to do pretty well.

I spent some time looking at what pieces had done better than the rest. There weren’t very many. I haunted support groups and listened to the questions people were asking in them–and not getting good answers to. I started trying to answer those questions.

Better times on walkingwithjane.org

A year later, everything is different. Last year, February generated just 475 views for the entire month. This year, February generated two shy of 1700. July was the last month with less than 1000 views and despite the slow start in January and February of 2014, we had nearly 17,000 views for the year.

…I was ready to hang it up.

The website was not the only thing that took off last year. In 2013, our Jimmy Fund Walk team had seven walkers signed up, five of whom walked all or part of the course. We raised $21,870 in that effort. The year before, we’d had a slightly larger team, but only raised about $17,000.

Better times for walking

In 2014, we merged our team with another team that was also raising money for NET cancer research. that combined effort created a team of 48, including five virtual walkers. We had seven Pacesetters–people who raised more than$1500 each. As a team, we raised nearly $68,000.

A year later, everything is different.

Our Relay for Life team raised over $9000 last year for the American Cancer Society, though the size of the team continued to shrink despite our best efforts. That was the lone problem on the fundraising front.

Better times spreading the word

We appeared with Drs. Jen Chan and Matt Kulke on Doctor Radio twice in 2014 to talk about NET cancer. There were stories printed in local newspapers about our efforts that helped educate people about NET cancer. We were officially recognized by the IRS as a 501 (c)(3) charitable organization. I was reappointed to the Dana-Farber Cancer Institute’s Visiting Committee for Gastrointestinal Cancers.

As a team, we raised nearly $68,000.

It was a great year for Walking with Jane.

Bad times for me

But it was a hideous year for me personally. While I contemplated shutting the website down, I was also mourning the loss of one of my oldest and dearest friends–a woman I had gone to high school with and who had changed my life during a truly troubled time. In the six months before her death from triple negative breast cancer, we had talked almost every day–both of us very aware that she was, barring a miracle, facing the end of her life.

It was a great year for Walking with Jane.

In June, another of my oldest friends learned his wife has breast cancer. This fall, three of my favorite students lost their father to colon cancer. Another friend lost her mother to Parkinson’s. My father-in-law was diagnosed with a serious case of prostate cancer.

Worse times for me

But August delivered the worst blows. I lost one of my two nieces after a long illness. She left three children. Two days later, my phone rang at 5:30 a.m. My brother was calling from Seattle. My father had had a stroke a few hours earlier. It wasn’t good. How soon could I get there?

But it was a hideous year for me…

I caught the first flight out of Boston I could get to, but he was dead before I landed. I spent a week with my brothers and sisters making calls to his friends and cleaning out his house.

Times that have passed

My father and I were estranged for many years. Jane once had to physically separate us during one of his visits. But things changed in 2010. He had lost my mother after a long battle with Alzheimer’s in February. When I called him the night Jane died to tell him she was gone, he gave me the only consolation that made any sense. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.”

…August delivered the worst blows.

I flew out to Seattle every Christmas after Jane died. We spent Christmas Eve and Christmas night together and talked about what we had lost and what we were trying to do deal with that loss. We finally had something in common. I miss him.

Times of nightmare

About once a month since Jane died, I have a dream. We are out somewhere and we get separated. I call her name. She does not answer. I look everywhere for her. I cannot find her. I become increasingly frustrated and upset as I race around trying to find her. Then I wake up. In that moment of realization I am unbelievably sad and upset. Sometimes I wake up with the tears already streaming down my face.

But things changed in 2010.

I’ve had that dream every night for the last two weeks. Maybe I have had it every night for the last four years, two months and 19 days but don’t remember having it most nights. I only know that most nights I avoid going to sleep for as long as possible.

Times of reflection

In December, I took a week off when my brother came out to visit. I’ve found it very hard to get back to work since he left. Part of me would like nothing more than to stop doing all this work on Walking with Jane. I’d like to lie in bed and stare at the ceiling. I’d like to curl up in front of the TV and pump DVD after DVD into the player. I’d like to sit and watch the snow pile up higher and higher, blocking the doors and the windows and relieving me of any responsibility for anything.

About once a month since Jane died, I have a dream.

I’ve spent the last two weeks thinking about the goals I can’t seem to reach and the seeming futility of what I am trying to do. February has been a cruel month. I’ve lost track of how many people in the NET cancer support groups have died in the last 28 days. Every day brings word of another death or two or three–of another person who has been told there is nothing more the doctors can do–of another person going home to die.

Times of hope

But for each of those stories I hear about someone getting into a promising trial or undergoing a liver embolization that alleviates their symptoms and slows the disease; I read about others finally getting a definitive diagnosis thanks to an Octreoscan or Gallium scan; and I hear about the new immunotherapies on the horizon that may finally offer hope for a real cure.

February has been a cruel month.

Maybe that’s why I go searching for Jane more often in my dreams: to tell her there is real progress being made and that someday–soon–NET cancer will die. Or, more likely, I just miss her.