Every picture tells a story

Much has changed in the NET cancer picture over the 65 months since Jane’s diagnosis in August of 2010. We have new drugs, new diagnostic techniques, foundations supporting awareness and research with clearer visions and greater support than they had then. We have glimmerings of a better understanding of the disease than we have ever had.

Lives are at stake…

Those big picture changes would not have meant much, however, in terms of Jane’s survival were she to walk through the door today with the same advanced form of the disease. Jane’s heart was too far gone, her liver too involved, her ability to digest her food at a pace that gave her time to absorb nutrients so far gone she was starving to death. Greater awareness of her disease that led to earlier diagnosis would be the only thing that would have helped her–and that remains the case.

Parts of the picture are blurry

There are still far too many doctors who have no knowledge of the disease–or have knowledge that is badly out of date. While our imaging methods are far better than they were five years ago, doctors still have to have a reason to order them. We remain without a simple means of testing for the disease. In that area of the picture, we especially have work to do.

We have glimmerings of a better understanding…

And though we have better means of slowing the disease down, better means of alleviating the symptoms of the disease, we still lack anything to use to cure the disease if it is not detected very early in its course. For now, we must be content with extending life and improving the quality of life for NET cancer patients.

Picture the future

Researchers seem poised to make a series of breakthroughs based on new understandings of the disease and how it works. What will slow or speed those efforts, however, will be the degree to which we are successful in raising awareness of NET cancer and the resources to fund the basic research necessary to understand it well enough to cure it.

…we still lack anything to use to cure the disease…

Every cancer has weaknesses. From knowledge of those we can create cures. But first, we need to find them and understand them. And in NET cancer doing that has proven very difficult.

Leading by example

A little over a year ago, I proposed steps I thought we needed to take to increase awareness and drive increased funding for NET cancer research. Reading those ideas now, I know I didn’t phrase those things very well; I let my ego get in the way in places. I think we all do that periodically.

Every cancer has weaknesses.

Most of what I proposed then I could not undertake on my own. But I felt the ideas were important enough that, where I could, I would try to implement them myself. I’ve always said it is better to lead by example than by words, anyway.

Patients paint their own picture

I recruited some patients to tell their stories on walkingwithjane.org. My understanding of some of the treatments we are doing improved as a result. It’s one thing for me to describe liver embolization, for example. It is something else for the actual experience to be described by a patient. And many patients seem to agree with that concept.

…I let my ego get in the way…

I haven’t found a way to get those stories broader play, but if we are going to create a picture of NET cancer in the public consciousness, it is a thing we have to figure out how to do. I’ve continued to cultivate members of the local press with an eye to trying again one of the things I tried earlier in my work here: putting together a package of stories about NET cancer for NET Cancer Awareness Day.

Regional picture

Walking with Jane has committed to a long-term partnership with the Dana-Farber Cancer Institute. Thanks to the efforts of a patient I had not met before, that organization has launched a major fundraising campaign to support its own NET cancer program.

…patients seem to agree…

We will very much be a part of that effort, which was launched December 9 with a reception and speaking program that began almost five years to the minute after Jane entered her final coma. We didn’t plan it that way. It’s just how it happened. It was a difficult night for me–but I appreciated the symbolism of that moment.

Local picture

Walking with Jane ran a wide variety of events in the year just ended. We did dinners with local twists–and will do more of them. We did a miniature golf tournament rather than one on a regular course because there are so many regular tournaments in our region–and we know so few people who play regular golf. We created a zebra herd for our local Relay for Life to educate our community–yet again–about NET cancer.

We didn’t plan it that way.

We tried to do an audio podcast and created some new PSAs for our YouTube channel–but that was an area we failed in more than we succeeded. We also gave some speeches to local clubs and civic groups–but not to enough. We’ll do more in the future, if we can convince groups to do so.

Imperfect picture

And we worked to create a familial feel to everything we’ve done. We’ve embraced patients and caregivers and researchers and people who, before they heard it from us, had never heard of NET cancer before. I’ve told Jane’s story, but also listened to the heartbreaking stories of others.

 We created a zebra herd…

But there are lots of other things in that plan we have not moved on. The grand alliance of regional NET cancer groups across the globe is still little more than a dream I have no idea where to begin on, though some of us have talked about doing a joint Mediathon next November. Such a move might enable us to go 24-36 hours and truly cover the globe.

Personal Picture

More than any year, 2015 was difficult for me, personally. I’ve written hundreds of thousands of words–mostly about NET cancer and what it is like to be a widower created by that disease. It has not been a pretty picture. Very little about the last five years has been.

I’ve told Jane’s story…

I described it to my Board of Directors this way: I made a vow to Jane and to her doctors that I would do all I could to help find a cure for this disease. I don’t walk away from the disease that killed her–I stick my hand back in those flames every day.

Another view

“Actually,” one of my board members replied, “You don’t stick your hand in the flames–you jump in with your whole body.”

I made a vow…

Each of you reading this does that, too. You are immersed in this battle, whether you are a patient, a caregiver, a widow or a widower. Lives are at stake–and none of us will leave these flames until there aren’t.