Simple beginnings

I met with Matt Kulke, Hillary Repucci and a NET cancer patient at the Dana-Fraber Cancer Institute on a muggy day in late August of last year. We’d gathered to talk, not about current research, but about the financial situation NET cancer researchers were facing not only at DFCI, but across the country as well. The topic was a simple enough one.

I will continue to write here…

The patient had an idea for a multi-year, multi-million dollar fundraising campaign that would reach out to regular businesses and others with deep pockets in ways we had not attempted in the past. We began working on an initial kick-off meeting and getting the approvals required from the upper levels we would need to proceed immediately thereafter.

The not-so-simple truth

By mid-October, we had settled on three years and $3 million for the campaign, which we launched on December 9–the fifth anniversary of the last day Jane was conscious. No one knew that until I brought it up in my opening remarks that night. They had suggested the date and I didn’t object because it seemed a symbolically fitting moment.

The topic was a simple enough one.

Since that night, we have raised over $600,000 for NET cancer research at DFCI’s Program for Neuroendocrine and Carcinoid Tumors, negotiated a first-of-its-kind Jimmy Fund Marathon Walk group in support of all the teams and Walkers walking specifically for NET cancer, held a summit for the captains of those teams, done an extensive photo shoot in the DFCI NET cancer lab, and worked on a  slide show and presentation we can take on the road to tell the Program’s NET cancer research story and why it matters that we hope to put the finishing touches on this week.

Simple realities

The simple truth is that all of those things have chewed up both time and emotional energy that normally would have gone into other NET cancer projects–like this website. I’ve slowly realized this spring that, much as I’d like to do everything, I can’t.

…a symbolically fitting moment.

Much as I’d like to spend all day every day working on NET cancer, I can’t do that either. It isn’t healthy–for me or anyone else.

Simple emotional needs

I need time to mourn. Nearly 66 months after Jane’s death I know that too much of this house looks like a shrine to the couple we were and the person she was. Last summer, I replaced all the furniture in the living room. I took down the photo collages of her I had hung on the walls after her death and began putting up artwork that is more reflective of the person I am now than the person I was then.

…much as I’d like to do everything, I can’t.

The result is I find myself living largely in that room. I use the kitchen, where I have made the second most changes, to cook in and to eat in. The only times I use the dining room are when I have large groups in for dinner or to work on a project. I sleep in the bedroom, but I had to move it before I could really sleep at all, and still have great reluctance about going in there. Our former bedroom has become a collection point for odds-and-ends I don’t know what to do with. Environment, it appears, really does matter.

Physical reality

I need time to exercise my body as much as my mind. I work on the landscaping around the house every day. I’m gradually transforming the yard into a bee, butterfly and bird sanctuary of gravel paths and flower and vegetable beds. I do everything there by hand–one shovelful, one wheelbarrow-full at a time. The transformation is painfully slow, but sometimes I find myself sitting in the midst of what is finished and discovering a peace I have not felt in over six years–the time before Jane fell ill. In truth, the sanctuary is as much mine as it is the birds’ and insects’.

I need time to mourn.

And I walk. I go for walks in the city through quiet neighborhoods and busy streets. I walk through local woods and fields and along the beach in the late afternoon. Part of it is I know the yard work alone won’t prepare me for the 26.2+ miles of the Jimmy Fund Walk on September 25–and that is a priority. But the walking gives me a chance to clear my head and explore the person I am becoming. It is a meditation that does more than anything else to remind me that I am a human being with needs that go beyond NET cancer or politics or the emotions of loss.

Simple truths emerge

The simple truth that emerges out of all of this–including Parts 1 & 2 of this series–is I need to rethink what is going on here and how best to address the ongoing needs of both patients and caregivers. I’ll need some time to do that but there are some things I can begin fairly quickly. The first of these is to clear out and update some of the sections I’ve ignored entirely over the last year. There are, I suspect, links that no longer go anywhere, for example; and the calendar is completely out of date at this point.

…one shovelful, one wheelbarrow-full at a time.

The simple truth is I need your input about what you need and want to see here. There are basic things– links to foundations, links to support groups, links to NET cancer programs–I know need to be here. But do the things I write here need to be supplemented with other kinds of topics than we currently provide? What do you need that you can’t get somewhere else? Are there other blogs we should be linking to?

The need for other voices

The simple truth is I need other voices beyond mine in this space. As I said in an earlier post in this series, my experiences with Jane during her illness and my own in the aftermath of her death are closing in on six years in the past. Yes, I’m still involved with patients, but not in the way I was with Jane. My role with doctors and researchers is also changing–and will continue to evolve as I move forward with what I am doing with the “3-in-3” campaign.

…some things I can begin fairly quickly.

The simple truth is we need more people to write about their experiences as lay caregivers, as doctors, as nurses, but most especially as patients. While there is great truth to the idea that if you’ve seen one case of NET cancer, you’ve seen one case of NET cancer, that doesn’t mean those patients and caregivers don’t have things to say that others facing this disease don’t need to hear–or won’t find useful.

A simple request

I will continue to write here, but I am also perfectly happy to serve as editor for those with things to say to this audience. Building and maintaining a blog or a website is not something everyone has the time or energy for. We have a good-sized audience here that is hungry not just for the latest research, but for the experiences of other patients and other caregivers.

…we need more people to write…

It’s time we made changes here to do that.