Lives of the dead

Jane was recovering from the H1N1 flu seven years ago. We had never heard of NET cancer or carcinoid syndrome. That she would be dead in little more than a year was not something we even considered. We had lives to live.

…my challenge is to write something here every day about NET cancer…

Today is All Hallows. It is the day we remember our dead and honor our saints. Some believe the souls of the dead visit us today. If they are visiting me, they have been largely quiet so far. I had no haunting dreams last night. But the light in the entry was on this morning–and I could swear I turned it off last night.

Lives of the living

In my darker moments, I wish the H1N1 had carried Jane off in 2009. It might have been kinder. I wouldn’t know about NET cancer, wouldn’t know about carcinoid syndrome or carcinoid heart disease; I wouldn’t be reading scientific papers and trying to make sense of a disease that bewilders even our best scientists.

We had lives to live.

And this website would not exist–though many would argue it has vanished over the last several months. It has.

Saving lives through work

There are a number of reasons for that. In August of last year, I began working closely with a group at the Dana-Farber Cancer Institute to create 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign is to raise $3 million for NET cancer research over the next three years. As I write this, we are closing in on our first million dollars.

I wouldn’t know about NET cancer…

Part of that effort was the creation of the #cureNETcancernow Boston Marathon Jimmy Fund Walk group, the cancer specific group in the more than 25 year history of the Walk. The group raised over $155,000. Next year, we’ll work to expand that group and create something similar for the Pan Mass Challenge, a biking fundraiser for cancer that traverses the entire Commonwealth of Massachusetts over two days.

Lives change

We’ve also put together a NET cancer speaking program for business and civic groups that we will try to find audiences for in the coming months. I’ve prepared a prospecting letter for that which I hope will go out sometime this month. There are a number of other projects in the works as well.

…we are closing in on our first million dollars.

But the larger part of my absence here stems from two other, larger issues. The first was the gradual realization that I was no longer accomplishing much here that others were not doing better elsewhere. What I was writing about Jane’s experiences was from the dark ages of NET cancer care.

Life with NET

When Jane was diagnosed, we had two treatments for non-pancreatic NET cancer patients in the US: octreotide and it’s long-acting, slow release form that offered some patients relief from the daily injections. If you could get to Europe, PRRT was another potential option. But that was about it–and nothing seemed to help Jane very much.

…from the dark ages of NET cancer care.

The world of NET cancer is a very different place today–and I’m not sure how relevant Jane’s story is beyond putting things today in a historical context.

Life with grief

And how many times can people read about the ongoing grief of another before that becomes a pointless exercise? I’ve written a book’s worth of pieces on Jane’s death and my efforts to deal with what has followed. Those pieces, I know, have made a difference in helping me deal with that loss; and they have helped others similar straits–or so people tell me.

…nothing seemed to help Jane very much.

But I don’t know if those posts, too, lose their impact over time. The emotions I feel haven’t changed much in six years. I’m clearly in the throes of what the psychologists call “prolonged grief.” I know it is more common than most think because I know so many people who have lost spouses and not recovered beyond being able to get through the day despite the passage of several years.

Reclaiming past–and future–lives

So I’ve taken some time for me to see if I could find my way to better place in my head. I worked on some landscaping and interior decorating projects that would make the place I live more about me and who I am becoming than about us and who we were. I went back to some places we liked to go that had been mine before Jane and I met and I shared them with her. I tried to find some new spaces where I could discover who I am without her.

I’m clearly in the throes of what the psychologists call “extended grief.”

Each of these things has carried an emotional price–just as every piece I write carries an emotional price. I can’t take a photograph, write an article–even take a walk–without investing a part of my soul in it. Neither Jane nor I entered into our marriage on a whim. We both knew the cost of letting another soul that deeply into our lives. We were completely invested in each other.

Building new lives–here and elsewhere

I can’t describe the last several months. I’ve laughed, cried, cursed and struggled. I’m still not sure who I am or who I will be a year from now. But, for a variety of reasons, I’ve begun to feel something besides grief and anger, periodically. It is a bewildering experience.

Each of these things has carried an emotional price…

But I also know there is work to be done–here and elsewhere. Over the course of the next month–NET Cancer Awareness Month here in Massachusetts–my challenge is to write something here every day about NET cancer and the ongoing fight to find the cure that has so far eluded us.

Revising this site

I’ll also spend some time rethinking and reworking this website so it does a better job of doing what I wanted it to do from the beginning: provide help for NET  cancer patients and their caregivers–both in terms of information and in terms of emotional support.

…there is work to be done…

If you have thoughts on how to do those things, feel free to let me know.