Life

I returned from Los Angeles on Wednesday night. There I was thrilled to help deliver the baby boy of my dear friend and her husband. I loved watching a new, beautiful life enter the world. Their little boy is a brave, sweet spirit. A new life reminds you of all the blessings and experiences that you have had in your own.

Happily, a new baby inspires gladness, joy, and an infinite number of positive adjectives. I contrast it with cancer, which stops people in their tracks. When dealing with the end of life, even the best-meaning people feel discomfort and struggle to find words of comfort.

While in L.A. I spent time with a friend whose sister passed away from cancer. She and her sister had joked that there should be a top 10 list for most awkward replies after telling someone you have cancer.

Here are a few of their ideas—

1. Any of us could die at anytime. A bus could run over me tomorrow.
2. But you look great!
3. We are never given anything we can’t handle.
4. There is always a silver lining in every cloud.

Feel free to write in with other awkward replies. Or let others know what you would like people to say to you.

Each of us discovers our own path and our own sources of comfort. I find my goal is to lead a committed life and eliminate sources of negativity from my life immediately.

On leading a committed life, Martin Luther King, Jr. is eloquent in his “Drum-Major Speech”:

“Every now and then I guess we all think realistically about that day when we will be victimized with what is life's final common denominator—that something that we call death. We all think about it. And every now and then I think about my own death and I think about my own funeral. And I don't think of it in a morbid sense. And every now and then I ask myself, "What is it that I would want said?" And I leave the word to you this morning.

If any of you are around when I have to meet my day, I don’t want a long funeral. And if you get somebody to deliver the eulogy, tell them not to talk too long. And every now and then I wonder what I want them to say…

I'd like somebody to mention that day that Martin Luther King, Jr., tried to give his life serving others.

I'd like for somebody to say that day that Martin Luther King, Jr., tried to love somebody.

I want you to say that I tried to love and serve humanity.

Yes, if you want to say that I was a drum major, say that I was a drum major for justice. Say that I was a drum major for peace. I was a drum major for righteousness. And all of the other shallow things will not matter. I won't have any money to leave behind. I won't have the fine and luxurious things of life to leave behind. But I just want to leave a committed life behind. And that's all I want to say.”

Caring Conversations

We at the Caring for Carcinoid Foundation highly value creating caring conversations among carcinoid/NET patients, families, friends and supporters. Caring conversations based on truth and transparency will lead to a more united and positive community. Nothing could be more valuable as we fight together against an incurable cancer.

Many of you have written to me asking the Caring for Carcinoid Foundation to build a home for kind, honest dialogue that does not exist today. In response to your requests, I’m delighted to announce the launch of “Caring Conversations”!

Caring Conversations will be a home for all members of the carcinoid/NET community to share their thoughts, emotions, ideas, and hopes for the future. We are a diverse group, and we all need each other. So each forum will address a specific need of the community.

Specifically, we will build on the results of our CFCF QuickPolls. QuickPoll #1 indicated that our community is very broad. QuickPoll #2 indicated the breadth of activity we pursue. QuickPoll #3 showed the wide range of emotions that we all experience as we cope with carcinoid/NET cancers. And, QuickPoll #4 shows the various treatments we’ve all experienced. Given our breadth of perspectives, each of us can help each other.

The forums in Caring Conversations will be closely moderated to ensure that the forums will be caring and safe environments. Supportive patients and caregivers will help to moderate.

At all times we will welcome your suggestions for how to make your experience even better.

These forums are going to be empty initially (they’re only one hour old!).

Come join us!

How to measure success?

I was asked recently how I measure the success of the Caring for Carcinoid Foundation. Many other non-profits find it difficult to answer that question—especially those without a clear mission or strategic plan. The Caring for Carcinoid Foundation has a clear mission to cure carcinoid and a three-step research road map.

Therefore, I do not measure success based on longevity. Instead I measure success in how quickly we can achieve our goals and go out of business.

In our 20 months of existence, I’m thrilled to list many accomplishments. These are made possible by a dedicated group of Board of Directors, each of whom may be contacted directly. Also, an esteemed Board of Scientific Advisors guides us. Each Scientific Advisor is a highly regarded cancer researcher who participates in our NIH-based, peer-review process to evaluate and rank all Caring for Carcinoid Foundation grant applications. We are committed to full transparency. For more information, see our FAQs under “The Foundation” link.

We patients do not have decades. If the Caring for Carcinoid Foundation still exists in 10 years, then we have failed each of you.

When the Caring for Carcinoid Foundation announced its mission—to cure carcinoid cancer—just 20 months ago, no one had this goal. In fact, many uninformed carcinoid experts scoffed at our goal, while others spoke of our naivete. Now, the consensus is that our mission is possible.

Set your expectations high. Let’s join together, work hard, then celebrate the day when the Caring for Carcinoid foundation is no longer needed.

Always listen to the experts. They'll tell you what can't be done and why. Then do it.
~ Robert Heinlein

If not us, who? If not now, when?
~ John F. Kennedy

Government Action

Last Friday morning (Sep. 29), before I left my hotel room to attend the National Organization of Rare Disorders (NORD) conference, I noticed that, on my nightstand, I had a big pile of scientific articles, Cancer magazine issues, and the like. As I rode down the elevator, I thought perhaps our doctors should sometimes ask us what we’re reading in order to gain better insight into how we’re feeling! When I feel energetic and at my best, I plow through scientific articles and read about progress in other cancers to address the gaps in carcinoid and related NET cancer research. At other times, my bed stand is covered in detective novels. At my lowest points, I’m reading the back of shampoo bottles and cereal box Fun Facts (did you know that the hippo is the most dangerous animal on safari?).

The NORD conference generated excellent information that we will apply to the carcinoid/NET community. Some topics included discussion of the NIH Road Map, translational research, and the NIH funding process. NORD brought together kind, generous government officials from the FDA, NIH, and NCI, each of whom shared insights on how to advance the cause of rare disorders and how each agency works to do so.

Dr. Von Eschenbach, the acting FDA commissioner, spoke eloquently about his belief that medicine is divided between OLD medicine and NEW medicine. OLD medicine consists of the doctor using his senses (touch, smell, sound, sight), and scans (X-rays, CT, PET, and other images) to create a diagnosis of the cancer patient and monitor tumor progression. Today, however, we have the opportunity to take advantage of NEW medicine. We must fund research to understand the genetic causes and molecular processes that result in carcinoid/NET and, thus, move toward curative treatments.

Our future is not in discussing symptoms and diagnostic images. Instead, as Von Eschenbach stated, the dialogue has changed dramatically to one of research into genetic understanding and the development of better treatments for rare diseases. A metamorphosis has occurred—this NEW medicine provides us with hope.

As you see in our Special Alert, the government is becoming actively interested in carcinoid/NET research. This is unprecedented and exciting. Follow the steps in the Special Alert to e-mail your U.S. Senators and Representatives.

“The stakes are too high for government to be a spectator sport.”
Barbara Jordan, former U.S. Congresswoman.

Let’s work with the government to find a cure!