A too familiar stair

Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.

…have a wonderful holiday…

Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.

A year of death and disease

This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.

He was dead before my plane reached Seattle.

But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.

Intimations of mortality

Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.

I will miss those hours with my father.

I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.

While much is taken, much remains

But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.

I am reminded of mortality at every turn.

In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.

Raising the bar

Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.

That total put us in the top 20 teams…

I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.

Promising discoveries

We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.

Our goals for that event for next year are even bigger…

The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.

Moving the needle

Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.

The second is of particular importance to NET cancer patients…

Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.

Original vision and current reality

This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.

Our fifth Walking with Jane Scholar was named…

But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.

Moving forward

My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.

…we are inspiring other people with far greater resources…

Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.

Final words

But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.

…to be able to stand at my wife’s grave…

And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.

And I heard him exclaim…

I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.

Thank you to all of you…

Happy Christmas to all, and to all a good night.

Pax et lux,

Harry Proudfoot