The zebra’s tale

I had a very different plan in mind when I got up yesterday morning. But that was before several sources reported the possibility that ESPN’s Stuart Scott’s cancer was carcinoid/NETs. My response to that was to shelve the piece on goals for Walking with Jane in 2015 I was working on and pursue the more timely story that seemed to be evolving. For a time, it appeared reporting on Scott’s cancer was following the all-to-familiar pattern we experienced after Steve Job’s death.

…hard work is the road to longterm success…

By the end of the day, it seemed likely those early reports were incorrect. Rather, it now appears Scott had a form of cancer even more rare than NETs. If NET cancer is a zebra, the best explanation of the cancer Scott appears to have had is that it is a polka-dotted unicorn. Given what I know of doctors’ responses to NET cancer, I can hardly imagine how difficult Scott’s interaction with his doctors may have been, right up to the moment of his emergency surgery in 2007.

Job one: raising awareness

The entire experience underlined for me how important it is that we raise awareness for all the zebra diseases out there. Last year, thanks to the ice bucket challenge, Lou Gehrig’s Disease landed on the map with a bigger splash than even when he made his announcement that he had ALS. If nothing else, people have now heard that name–and one hopes many more know the symptoms of the disease than did so a year ago.

…a polka-dotted unicorn.

Every rare disease needs dedicated advocates working to raise awareness of the disease among both medical personnel and lay people. We need to find ways to get primary care doctors to take the possibility that a patient may have a zebra more seriously than many do. Almost daily, I encounter patients whose doctors poo-poo the idea that they may be looking at a case of NET cancer. They sometimes refuse to test for it, even in the face of considerable evidence that it may be the culprit in a patient’s suffering.

The doctors’ problems

I don’t blame them for their ignorance or their actions. Primary care doctors face an overwhelming task. There are tens of thousands of diseases with hundreds of thousands of symptoms, many of which overlap with several different diseases. No human being can truly be a master of every disease. Specialists have it easy by comparison.

Every rare disease needs dedicated advocates…

But even specialists face significant problems. There are thousands of types of cancer. They can become expert in a handful and have significant knowledge about a number more. But we become most expert at what we most often deal with. If you see one case of NET cancer over the course of a career, it is unrealistic to think you are going to spend the time becoming an expert in it. You know lung cancer, breast cancer, prostate cancer, colon cancer, and pancreatic cancer well because you see them most often.

Building on the past

Last year, with Jennifer Chan and Matt Kulke, I did two shows on NET cancer on Doctor Radio on Sirius XM. We hoped to reach doctors and patients with more knowledge about the disease and its treatment. My hope is that we will return to that program again this year.

There are tens of thousands of diseases…

Radio could give us the ability to reach more folks than we do now. I know many of you have contacts in that world. Some of you have even made appearances on radio broadcasts to talk about NET cancer. I want to encourage regional foundations to exploit those contacts. We have several doctors who have expressed a willingness to do things similar to what we have done with Doctor Radio. And I am willing to do as many radio appearances as people want me to do.

Audio and video podcasts

But we need to do more. Starting this month–I hope this week–Walking with Jane will launch a 5-10 minute audio podcast once a week on our YouTube Channel. That podcast will touch briefly on the latest research on NET cancer and events scheduled by the various NET cancer foundations and patient groups. The program will not pretend to be more than a headline service, though we will find a way to provide links to more in-depth coverage of those stories we cover.

Radio could give us the ability to reach more folks… 

In addition, we will launch a regular video podcast once a month that will include a five-minute news summary similar to the audio podcast, as well as more detailed interviews with doctors, researchers, foundations and patients. We hope the video podcast will air once a month and run 20 minutes or so.

Expanding offerings on walkingwithjane.org

Much of what I write here has an editorial flavor to it. My hope is to provide more hard news in this space about NET cancer in the coming year. I also need to recruit patients and caregivers to help provide more of the content here. If you are a patient interested in sharing your experiences with your treatment here on a regular basis, I need to hear from you. If you are a caregiver–professional or layperson–I’d like to provide space for those stories here as well–and I want to hear from you, as well.

The program will not pretend to be more than a headline service…

I have come to the realization that I am trying to do way too much on my own–especially as I try to expand what we are doing and offering. Writing for this website is one of the things you can do to help.

Telling Jane’s story in new venues

Help on that score will free me up to undertake a new task. I have begun scheduling speaking engagements for the coming year. I am not pretending to be a medical expert in these speeches. I am telling Jane’s story and relating my personal experiences as a caregiver. It is a form of outreach I have been uncomfortable doing to this point. It is only in the last few months that I have been able to talk about what happened with Jane in public without breaking down.

Writing for this website is one of the things you can do to help.

But sharing her story is something that needs to be done. And I won’t just be doing it with public speaking. In December, I began composing The Widower’s Tale, the story of what Jane and I went through with her disease–and what I have gone through since her death. Eventually, my plan is to publish that story as a book. The proceeds from that will go to NET cancer research and to support an online grief group that has helped–and continues to help–me get through the grief process–and needs the money to keep doing their good work.

Giving people what they need

Last year, this website had nearly 17,000 visits. The goal for next year is to increase that number by 7,000. Every person who visits this site arrives looking for information to help them deal with their NET cancer or the NET cancer of someone they love and care for. Our job is to provide both information and moral and emotional support for them when they need it.

…sharing her story is something that needs to be done.

Last year, we nearly doubled the number of people coming here in our best previous year–and nearly tripled the number of visits made in 2013. There is no magic in that improvement. We are giving people what they need when they need it. But we need to do a better job and I will need your help to do that.

Building success

I am not suggesting anything fancy here. While I would be delighted with an ice bucket challenge event of our own, I know lightning rarely strikes in the same place–or in the same way–twice. We cannot sit back and wait for a lucky break–though we do need to be prepared to take advantage of it if it occurs.

We are giving people what they need…

My experience tells me that hard work is the road to longterm success in any endeavor. There is nothing glamorous about it. It amounts to getting up every morning and doing the work that needs to be done. I hope some of you will come help me do some of the lifting and toting that needs to be done this year.

Editor’s note: This is Part 1 of a series on our goals and plans to reach those goals in 2015. Part 2 will talk about financial goals.