Retirement and silence

Dear friend,

This is not what retirement was supposed to be like.

I want cancer dead—period.

Every morning I wake up to an indescribable silence. I eat a solitary breakfast, do solitary chores, eat a solitary lunch, go for a solitary walk, read and write in solitary confinement. At night, I put off going to bed for as long as possible, knowing I am going to an empty bed in an empty room in an empty house.

This is what it is to be a 62 year-old widower.

The silent killer

I am a widower because when my wife Jane was diagnosed with carcinoid cancer—also called NET cancer—it was a cancer seemingly no one had heard of. Worse, it was a cancer without a cure. It still is.

They will have options Jane never had.

Jane was 56 when she died. We were seven months from retirement. We were going to write books and travel and garden. We were going to turn off the alarm clock and wake in each other’s arms every morning.

Now, there is only silence and an empty house and a gravestone on a hill and tears that come out of nowhere.

The power of silence

I don’t want anyone else to experience that sinking feeling Jane and I knew when her primary care doctor told us he’d never heard of carcinoid cancer before—or the even greater sinking feeling we got when a local oncologist told us she had heard of it, but never seen a case.

That’s why twice a year I send a letter or email to everyone either one of us ever knew asking them to help fund research and education about this killer disease that takes at lest 12,000 American lives each year—and may have a hand in the misery of as many as three million Americans who will never know they have it.

It’s why I spend several hours every day working to learn about the disease and educate people about what it is, what it does, and the pathetic number of ways we have to treat it.

Walking in silence

It’s why I will spend hours

walking in circles at the Greater Fall River Relay for Life this June.

…it’s a start.

It’s why I will again walk from Hopkinton to Boston this September in the Boston Marathon Jimmy Fund Walk.

It’s why I swallow my pride and beg people at numerous events to contribute even a dollar to Walking with Jane.

Successes in silence

We’ve made progress since I started doing this almost three years ago. In 2013 the financial resources devoted to this disease increased to between $7 and $8 million. In 2010, that number was barely $2.5 million. That’s still a rounding error compared to what we spend on breast cancer research each year, but it’s a start.

I don’t want anyone else to experience that sinking feeling…

We have two new drugs that were not yet approved when Jane died; a radiation treatment that has been used for years in Europe is in Phase 3 trials in the US; two viruses—one in the US and one in Europe–are making their way through the trials process; two more drugs are in Phase 3 trials in the US; two new diagnostic tests are either in trials or getting ready to enter trials; and two old drugs that are used for something else—but seem to be very effective in treating carcinoid tumors–will soon enter a first Phase 3 trial.

Accepting the challenge

For new patients, all of this is good news. They will have options Jane never had. But funding cancer research—especially with very little help from either the government or major drug companies—is neither easy nor cheap.

Jane was 56 when she died.

So here I am with my tin cup again to ask for your help. Last year, the February letter raised nearly $4000—an amount that was doubled to over $7500 by a generous friend who agreed to match whatever that letter raised up to a total of $5000. That friend has upped the ante this year and will match all donations dollar-for-dollar up to $7500 total.

Killing the silent killer

I’ve seen cancer up close and personal too many times in the 42 months since Jane was diagnosed. I want cancer dead—period. And I will keep working on it until it is.

…I wake up to an indescribable silence.

Please help that effort any way you can.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane Inc.

Walking with Jane, Inc. is 501(c)(3) non-profit charitable corporation

organized under the laws of the Commonwealth of Massachusetts.

Theory versus experience

People tell lots of stories about what grief looks like and how it works. They write books. They write articles. They talk about the stages of grief and about what recovery looks like.

Loss has weakened me.

But it is a very different story from the inside. The things we are told about how it all works seem largely myths at best to me. Thirty-eight months after my wife Jane’s death I have seen nothing that even resembles what the scholars and experts describe.

The myth of the first year

They talk about the first year of grief as “The Year of Firsts” and imply that when that year is over everything is better and you can get on with your life. Maybe that is true for some people. It was not the case for me. My second Christmas without Jane was, if anything, worse than the first. Maybe it was that my expectations were too high. Maybe I was still so much in shock at the first one—Jane had died just 15 days before—that I should have counted the second as the first. It was late in January before I felt anything but numb.

I cope with the life I live.

But every “second” experience was just as bad. Each one taught me the emptiness that had descended on me within seconds of Jane’s death was not something mere time would wipe away. Even 38 months later I am aware of the dense silence that surrounds me in every environment, no matter how noisy or crowded it is. Coming to grips with the reality that nothing I did or tried to do could fill that void was the work of the second year of grief—and of much of the third.

Grief tsunamis

At one point in that third year, I described myself as a toddler in my dealings with grief. I had learned to cope with the emptiness at times, but like a toddler, fell on my butt periodically for no better reason than it happened. People in my grief group refer to such events as “grief tsunamis:” They come washing in and drown whatever progress you think you have made without any warning. They can be triggered by the smallest seeming event but leave you swimming in tears and exquisite agony.

They do not see the fear that stalks me…

Two weeks ago, I was at a dinner to kick off the season our local Relay for Life. I was talking with an old friend Jane and I had worked with. Suddenly, the DJ spun the Righteous Brothers’ “Unchained Melody.” It was our favorite song. I fled the room, knowing what was going to happen if I stayed.

Appearance versus reality

But I might as well have stayed. The words were in my head and the tsunami had been launched. It was a week before I felt ready to deal with anything again. Without the need to get the Jimmy Fund Marathon Walk pages together the end of last week, I might still be paralyzed. The truth is that even with that pulling me back to the surface I am still struggling as I write this. The house is too quiet, too empty, too filled with memory.

…I look to have recovered from Jane’s death.

To the people around me, I look to have recovered from Jane’s death. I can carry on a conversation, talk intelligently about a piece of art or some new piece of scientific theory; I make the bed, clean the house, go for a walk every day; I laugh at the appropriate times and seem to avoid being cruel most of the time—though I still have my moments. But each day I realize the truth of my neighbor’s words shortly after Jane’s death. She had lost her husband a dozen or more years before. She said people told her all the time now how she seemed to have gotten beyond her loss. She said she sometimes told the ones who could handle it that the truth was she had just learned to cope—that the grief and emptiness were still there—that she still sometimes cried when her children were not home or when she knew they could not hear her.

People think I am doing fine

Three years and two months into this journey, I can give a good counterfeit of normalcy most of the time. I’ve always been good at hiding how I really feel from everyone but my very closest friends. Sometimes, like at that dinner, I have to struggle to control what others see. But, for the most part, people think I am doing fine.

…the DJ spun the Righteous Brothers’ ‘Unchained Melody.’

They don’t see me screaming at the top of my lungs like a three-year-old when something frustrates me. They do not see the blinding anger that I still feel about the unfairness of Jane’s death. They do not see me struggling to go to sleep at night, struggling to find a reason to get out of bed in the morning. They do not see the fear that stalks me—or the loneliness that plagues me.

Coping skills and the mask of grief

I cope with the life I live. I cope with the losses life has dealt

me. I cope with the well-meaning ignorance I encounter every day. I cook and I clean and I write letters and articles and I work on this project and that event. I look normal and well-adjusted and like I am moving on with my life.

…I am aware of the dense silence that surrounds me…

I went to the cemetery yesterday. I placed a decoration I had built for the 38-month anniversary of Jane’s death on her grave. I will write a poem for her, and a card, and buy some flowers to put up there Friday for Valentine’s Day. But there will be no reciprocal gift or card here that day. I will wake up alone and go to bed alone and feel just as empty and alone as I did on Christmas Day—or any of the other holidays I have faced without her these 38 months.

Answering grief

The day after Jane died, I looked at myself in the mirror and said, “I’m too young to be a widower. I am too old to be a bachelor. What the hell do I do now?” For 38 months, the answer has been grief—and working to prevent others from experiencing what I have experienced by fighting Carcinoid/NET cancer with everything I have left. Where others see success, I am too aware of my failures—too aware of how much more I could have accomplished if I could bring my full focus and energy to bear.

…it is a very different story from the inside.

Loss has weakened me. I have endless ideas, but lack the energy and focus to make them work as well as they could. But I keep trying. The tsunamis keep knocking me down. But I keep getting up. The silence and the hurt cripple me. But I keep moving forward.

It is who I am.

Start spreading the news…

I have a wonderful nugget of good news: we have cleared the last of the hurdles at the Dana-Farber Cancer Institute. I will write, film, and produce a half hour show each month called The Carcinoid/NET Cancer News. DFCI’s Communications Department will help with B-Roll and other technical assistance, including the use of their studio when we need it.

“You can’t detect it if you don’t suspect it.”

There are still some scheduling issues to work out, but we should have the first show ready for viewing in March on the Walking with Jane Channel on YouTube.

What NET Cancer News will look like

The show will open with five minutes of NET cancer news summary, followed by a 10 minute,

in-depth look at one of those pieces of research, another 10 minute section on some group or individual dealing with NET cancer, and a five-minute section of upcoming events.

…expert explanations of what the research means for patients.

Matt Kulke and Jen Chan will be our go-to people for expert explanations of what the research means for patients. Eventually, I hope we can come up with the travel money to go talk to people outside the Northeast about the work they are doing. That will mean finding an underwriter or two since my own funds are somewhat limited–OK, very limited.

The goal is simple

If you have a carcinoid or NET cancer story to tell, we want to help tell it. I keep a close eye on research and events, but I can’t catch everything. To make this work we will need the help of each of you involved in this struggle.

…a wonderful nugget of good news…

My hope is the show will provide information for patients, lay caregivers, and general practitioners, while helping to link the research communities even more closely together. More importantly, I hope this will hasten the day that we will no longer face the problem of “You can’t detect it if you don’t suspect it.”
–Harry Proudfoot

When last I hugged my wife

Three years ago today, I held my wife’s hand as her life support was removed piece by piece. I held her hand and talked to her and read to her and chanted my mantras for the dying. And as she breathed her last I caught that breath and merged it with my own.

…be extra kind even to those you do not know today.

Today, I weep for the loss of her body and smile for the state of her soul. I miss her smile, her laugh, and her mind. I miss all the things we did together and it hurts to do them alone. I cannot write but I think of her. I cannot walk but I think of her. I cannot cook but I think of her. I cannot even clean but I think of her.

You do not know the burdens they carry

Hug your spouse or boyfriend or girlfriend extra hard today. Hug your child your parents and your grandparents extra hard today. Hug all the people in your life today and hold them close to you–you do not know when–or if–you will ever be able to hold them close to you again.

I miss her smile, her laugh, and her mind.

And be extra kind even to those you do not know today. They may bear burdens you know nothing of: They may be dying and facing that death alone; they may be mourning a death–and mourning that death alone; they may be taking care of someone who is ill or dying and feel the world has left them on the tip of that awful spear alone; they may not know when they will eat again or where they will sleep tonight. The world is filled with trouble. Do what you can to ease the paths of those who are hurting and hungry and alone.

Be well. Be thankful for what you have–and be mindful, always, of the needs of others.
–Harry Proudfoot

If you are in the same position I am, you can find help for your grief at griefhealingdiscussiongroups.com. They have been a full raft in a very stormy sea for me–and will be for you as well. There are specific groups for specific kinds of loss, all moderated by very caring and knowledgeable people who know what it is to lose someone.

The first Awareness Day

November–not April–is the cruelest month–at least for me. It is the month Jane went into the hospital for the last time. It is the month of three of the four most vicious carcinoid attacks. It is the month of her last birthday, our last Thanksgiving, and of our last best hopes.

We still have no cure–but the landscape is changing.

And it is the month that most forces me to interact with the carcinoid cancer that killed her. As Jane and I prepared for our last trip to Dana-Farber, NET cancer advocates were “celebrating” the first ever Worldwide NET Cancer Awareness Day. We knew nothing of it at the time. We were too immersed in Jane’s own daily struggle with the disease to be bothered with any piece of information that did not promise some immediate aid–some immediate bit of knowledge that would give us some glimmer of hope in the long battle we saw ahead. We were–though we did not know it at the time–at a critical juncture. The next few days would decide everything, though we would not know that for another month.

Print Awareness

Jane was 11 months gone when the next NET Cancer Awareness Day arrived. We published an entire package of stories about NET cancer patients, doctors and caregivers. We hoped for a broad audience. I sent emails to every daily newspaper and every wire service in the country announcing its availability. Four papers–two local dailies, a local weekly and a local monthly printed any of it. It made me painfully aware how difficult the awareness side of the fight was going to be. We did catch one break that fall when the New York Times ran a piece on NET cancer in their health section. I’m not sure we had anything to do with that–but I like to hope.

I live with NET cancer every day.

The third NET Cancer Awareness Day was a train wreck from my perspective. We did the groundwork for a number of stories, as we had done the year before. But nearly all of them collapsed as sources evaporated. And after the failure of the previous year at getting things published outside our own backyard, it was hard to get overly excited about the prospects of the second effort.

Video and Social Media Awareness

This year, we took a different tack: I made a trip to Dana-Farber to spend a day doing interviews in late October and put together about 30 minutes of video to form the cornerstone of a social media event I called the NET Cancer Social Mediathon. We drew a peak audience of about 10,000 between Facebook, Google+, YouTube, and this website. I wanted more than that–but expected far less. We didn’t raise any money, but we made a lot of people aware of the disease who had not been before. Some wrote me afterward to tell me they were going in to get tested. Even one person getting tested would have made the entire enterprise worthwhile.

We hoped for a broad audience.

I live with NET cancer every day. I don’t have it, but I deal with it. I spend some imd every day reading the latest research, talking with people who have the disease or people doing research on it or people trying to raise money for it. I draft letters and do mailings. And I miss Jane terribly and never forget what it was that took her from me.

The Price of Awareness

But the month of November increases both the number and the intensity  of all those efforts. The rest of the year it is never far from my thoughts. But in November it feels like that is all I do–all I think about.

November–not April–is the cruelest month…

In eight days, it will be three years since Jane died. We still have no cure–but the landscape is changing. We have more resources. We have bought some people some more time with better quality of life. The day will come. The day will come.

6 a.m. Gentlefolk, start your engines

Good morning, World. And welcome to the first annual Walking with Jane NET Cancer Awareness Day Social Mediathon. I’m your host, Harry Proudfoot, the chairman and chief bottle washer for Walking with Jane, a non-profit charitable organization whose purpose is to raise funds and awareness for NETs and carcinoid tumors.

My name is Harry Proudfoot and I am the chairman of Walking with Jane, Inc. a non-profit charitable organization working to raise awareness about NETs and carcinoid cancer. There are other groups working on this as well–and we will talk about each of them over the course of the day. But I would be remiss if I did not immediately mention the overall organizing body for today’s Worldwide NET Cancer Awareness Day, netcancerday.org. On their site you will find lots of other things going on around the world today to work to raise awareness about this little-known but deadly disease.

First goal of the day met: We now have 514 likes on our https://www.facebook.com/walkingwithjane page.

Our first video link of the day will give you some background about NETs and carcinoid cancer. It features Dr. Matthew Kulke and Dr. Jennifer Chan of the Program in Neuroendocrine and Carcinoid Tumors answering some basic questions about NETs. Links to videos will remain up here over the course of the day.

We are 45 minutes into our 18 hour social media marathon at this point. I can already tell this is going to be a hectic day. We are posting–in various forms–not only here but on both my personal and the Walking with Jane Facebook pages, Google+, Twitter, YouTube, and Tumblr. I’m hoping that some of you will pass this material along via your Pinterest and Reddit accounts–and anywhere else you can think of. My hope is that we will steadily grow our audience between now and midnight. Please feel free to share on any of your pages some or all of what we post today. The idea is to educate as many people as we can about NET cancer between now and midnight. In the 7 a.m. hour, we will talk about the ways you can help us create the resources to kill NETs and carcinoid cancer.

7 a.m. The resources issue

I want today to be about learning about NET cancer more than anything else. But it is hard to talk about NET cancer without getting into the scarcity of resources for fighting the disease. Between 1968 and 2008, the federal government did not spend a cent on NET cancer research. In 2008 they put up the money for a conference to discuss what researchers would do if they had money. In the last couple of years, they have funded two studies to the tune of less than $1 million total.

Funding for NET cancer research fell entirely into the private sector for 40 years–and the private sector was just not that interested. What is now the Carcinoid Cancer Foundation was founded in the late 1960s to try to raise money for research. It was an uphill struggle. In the early part of this century, a young lawyer, who discovered she had carcinoid cancer only after she collapsed in the Boston subway, set up the Caring for Carcinoid Foundation to join the fight. But even with those additional resources we were only spending $3-4 million a year when Jane was diagnosed with the disease in 2010. One of her doctors told me after Jane died that Jane’s case–because she had been so willing to let them study the disease in her–had essentially doubled what we knew about NET cancer.

Things are marginally better now in terms of money–my best guesstimate is we will spend $5-6 million in the US this year on NET cancer research–but we are still less than a rounding error on what is raised for breast cancer. Please, if you can help at all, go to our contribute page. There you will find links not only to ways to give to Walking with Jane, but to the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation as well.

In fact, let me make it even easier for those of you following us here:

Contribute to Walking with Jane Dybowski Fund for Neuroendocrine Cancer

at the Dana-Farber Cancer Institute

Contribute by Check directly to Walking with Jane

Contribute to the Carcinoid Cancer Foundation

Contribute to the Caring for Carcinoid Foundation

Contribute to Walking with Jane Jimmy Fund Marathon Walk effort

Contribute to the Walking with Jane Relay For Life of Greater Fall River team

Contribute in other ways

7:52 This just in

This just arrived via my Twitter feed from the president of Novartis, one of the drug companies involved with NET cancer research. It includes comments from organizations around the world about the progress being made in NET cancer awareness. You should give it a look.

But what leaps out at me is that while we have made great strides in awareness of the disease–everyone talks about that–the absence of anyone reporting progress in the treatment of the disease is vanishingly small. That needs to change.

In addition to our contributions to Dana-Farber, the Caring for Carcinoid Foundation and the Carcinoid Cancer Foundation, we also fund scholarships for students majoring in science who intend to enter medicine or teach high school science. Four of those scholarships go to Westport High School graduates, the place Jane taught for 30 years. A fifth goes to a student at Bridgewater State University, Jane’s alma mater.

8 a.m. Jane’s Impact

Toward the end of the last hour, we talked about Jane’s impact on what we knew about NET cancer. I want to start this hour with a video on Jane’s impact on her oncologist, Jennifer Chan. Please, take a look at this.

When I woke up yesterday, I was feeling pretty down–as those of you who read my Facebook posts know. We forget, sometimes, how the smallest action we take can have a major impact on the lives of others. Later this morning, I’ll share with you a video that shows the impact of a single poster on Jane’s wall on one of her students. But that is the impact we expect teachers to have on students. I don’t think anyone expected Jane’s battle with NET cancer would have the consequences it has had.

What brought me out of that funk yesterday was a single message on Facebook from a young woman who has struggled with IBS for a number of years: “I just wanted to say thank you,” she said. “It is because of you that I am forcing they test me for NET thank you for all you do to get this info out there!!!” She had no way of knowing the crisis I was in yesterday morning–the crisis that has lurked beneath the surface for me every morning for weeks.

I work very much in a vacuum on Walking with Jane. The limited feedback I get–the number of site visits, the number of likes on our Facebook page, the slow crawl of money coming in from fundraisers–does little to convince me I am having any real impact on killing this disease. In the classroom, I could see evidence of progress every day. In this line of work, not so much.

I wrote a post on that situation yesterday. But I did not talk about just how discouraged I was. I was ready to cancel this event. Today is after all, the 35 month anniversary of Jane’s death–and the 36 month anniversary of the last day before the terror of her situation descended on us both. Given my druthers, I’d be spending today curled up in a ball. I’d take a trip to the cemetery–I may do that yet–and spend time standing there with the tears streaming down my face, as Idid yesterday afternoon. But mostly, I’d have spent today thinking about closing all of this down: shuttering the website–God knows I haven’t done a very good job of keeping the calendar here up-to-date, and my posts have been increasingly rare this fall–another symptom of the malaise that seemed to be taking over my life–figuring out how to extricate myself from Relay for Life and the BAA Marathon Jimmy Fund Walk commitments.

I just wanted o say the hell with all of it: let someone else do it–someone competent.

But neither Jane nor I could ever walk away from a commitment if it seemed we were making even a small difference–no matter what it meant to us personally. Jane kept putting off going to the doctor because her students needed her in that last year. If she could have found a way to teach that last fall, I know she would have done that.

No action–no matter how small–is without impact. In the nine o’clock hour we’ll look at how what starts out small can grow into something much bigger than anyone expects.

Everyone makes a difference.

On another front entirely: Our Walking with Jane Facebook page has reached 520 likes. Is 600 by midnight too much to hope for?

9 a.m. Making a difference

Anyone can make a difference. Just ask Dan Hurley. Dan was one of Jane’s students back in the 1990s. His wife, Chari Swist, was one of my journalism students. They wanted to raise a little money for Walking with Jane–and Dan was getting into distance running. When the Fall River Half Marathon came up, it seemed like an opportunity to try two things Dan had never done before. He’d never done a run longer than an hour–and he’d never done an independent fundraiser before.

He and his wife brainstormed ideas for goofy things he could wear for the run if people donated certain amounts. He thought they’d raise a few hundred dollars. In two weeks, he rang up almost $2600. His story is this hour’s video.

This from the Carcinoid Cancer Foundation:

Today is Worldwide @NETCancerDay! Eagerly waiting for global webinar with #NETcancer specialists, 7 am Pacific Time. http://bit.ly/1gAVulu 

This is a three hour webinar with some of threading lights in the field. It starts in just under an hour and will be broadcast live over the web. If I had the bandwidth, it would be playing in my ear as I continue working here. The session is three hours. You may want to try to catch it.

And the Carcinoid Cancer Foundation has just posted that Andrew Cuomo has made New York the 41st state to declare this NET cancer Awareness Day.

But to come back to my original theme of this hour–you don’t have to be governor of a major state or a doctor to make a difference. Everyday people can make a difference just like Dan did. Of course not everyone is athletic. Not everyone is a teacher. But everyone can help regardless of who they are or what they do. Don’t believe me? Here’s a partial list of things you can do.

Volunteer to help sell tickets to a charitable event.

Perform for a charitable event.

Volunteer to work at an event.

Organize an event.

Help put up posters for an event.

Host a dinner.

Do a 5K walk or run and get people to sponsor you.

Attend a bowl-a-thon.

Hold a yard sale.

Canvas tour neighborhood with a NET cancer pamphlet. (I have one already made up.)

Bake for a bake sale–or organize one.

Join our Marathon Walk team–You don’t even actually have to walk any of it–you can be a virtual walker. And there are shorter distances, as well as the whole thing.

10 a.m. We can do this

Still don’t believe me? Let me introduce you to Jenaleigh Landers. She lost her father to NET cancer in June. When she and her brothers first learned of their father’s illness they joined our Walking with Jane Marathon Walk team. At 23, she recruited the lion’s share of our 2012 walkers. They Walked in from the 13.1 mile point, then hung around and waited for me to get to the finish line from Hopkinton.

After her father died this June, she wrote to tell me she just wasn’t up for the Walk this year–it was just too emotional. But when I put out the call for people to talk about those they’ve lost to NET cancer, Jena was right there to help. And she managed to do something i still have not managed: she sat down in front of a camera and talked about what her father went through. The Hank Landers Story is this hour’s featured video. Thanks, Jena.

So, let’s set some goals for today’s efforts:

Four and a half hours in, we have 29 views on walkingwithjane.org. Since we are posting things simultaneously to several locations, that is not a bad number for 10 a.m. Our biggest day ever was back in June at 197. My goal for today at the start was 100 views in 18 hours. That looks possible at this point. But i’d really like to break 200 for the first time.

Since last night, we have gone from 494 to 524 likes on our Facebook page. That’s up 30, but up only seven from this morning. I’d like to move that number over 600 by the end of the day.

Over the last week I’ve put up 12 videos on NET cancer. People need to watch those because they will learn a lot from them. So far they are not getting very many views, for all that lots of people are dying they like the links on Facebook. At the dry least, the NET cancer FAQs needs to get to 100 views by midnight. For the rest, I am hoping for 25-50 each in that time-frame.

All of those thing will help me measure audience and audience involvement.

Finally, since I cannot measure donations with any accuracy until much later–if at all–I will have to rely on the number of visits to the donation page and outgoing links from there. One hundred outgoing links from the contributions page should mean we have had some impact on the fundraising front. Next year, I’ll worry more about that side of things.

We are going to need lots of help to reach any of these goals–or the one I have no way of truly measuring: the total size of the audience we reach today. Please, if you are reading any of this on any of the platforms we are using, share what you are reading with those in your group. And please let me know what you think about what we are trying to do here today by commenting on both what you like and don’t like on whatever platform you are on.

11 a.m. Why NET Cancer Awareness Day matters

In five hours, I’ve written nearly 2500 words, posted four videos, made numerous tweets, and shared a number of bits of news from other sources about NET cancer. I’ve promised to keep doing this until midnight tonight. But why should anyone care? Here’s Jane’s oncologist, Dr. Jennifer Chan, in an interview I did with her on October 30 talking about why NET Cancer Awareness Day matters.

Sometimes, this fight is about avenging Jane’s death for me. I hate that she is not here–that she was figuratively ripped out of my arms just moments before we were supposed to retire together. We’d spent our lives taking care of other people’s children–of living for others. Finally, we were going to control our time and work at the things we loved at our own pace–a pace ungoverned by clocks and calendars.

Jane told me her vision of our post-retirement lives the day before she went into the hospital for surgery. We would travel, work in the garden, take long walks and ride our bikes again. We would watch our powers gradually diminish, watch ourselves gradually age until we were ready to move on–to move back to the garden we both believed in where we would both build new bodies for the new work of new lives. One of us would die first–few people get to die peacefully together–but the other would not be alone for long.

There was nothing easy about that month in the hospital. It still haunts my dreams–if not my waking hours. The diarrhea was massive–and uncontrollable. It stripped her of every ounce of dignity. She could not make her hands form words on the page. She never lost her sense of humor–never lost her love of others–but her body was–at the end–dissolving before our eyes.

I can’t say with certainty that every death from NET cancer looks like Jane’s–but I suspect it does. I can do nothing to change what happened to her. But having seen what I have seen, I am bound by empathy and compassion to do everything I can to cure this thing for others. And I am equally bound by that same empathy and compassion, to be their for others facing similar outcomes.

Cancer is a horrible way to die. And NET cancer is a horrible cancer. I am pledged to do everything I can while life endures in this body to comfort the afflicted and work to find  cure for this disease. Ultimately, this is about saving others from that kind of suffering as well as extracting vengeance for Jane’s death.

I hope you all stand with me in this.

Noon–Six hours Down, 12 to go

Jane did not just have cancer. That cancer affected her heart.

Unlike other forms of cancer, carcinoid tumors take an active role in the body’s chemistry. A carcinoid tumor can form anywhere in your body–and can produce any of the more than 24,000 peptides and hormones the body produces. And those peptides and hormones control everything–from how much you sleep to how fast your heart beats to how fast you digest your food.

In Jane’s case, her tumors were producing serotonin. Serotonin controls how fast food moves through your body, your breathing, your blood pressure, and how much you sleep at night. Normally, it is metabolized in the liver. But when the tumors are in the liver, that serotonin shoots up through the valves in the right side of the heart. And that causes something called carcinoid heart disease. Dr. Jennifer Chan explains in this hour’s featured video.

One of the things that makes carcinoid cancer so difficult to detect is that the tumors can produce any of those 24,000+ hormones. First, we don’t have reliable tests for every one of those chemical compounds. In fact, we don’t have tests for the vast majority of them at all. And even if we did, each one would have to be tested for individually. Researchers are interested in finding a single test–like the PSA for prostate cancer–but they have not found one yet.

The second thing that makes these little nasties difficult to find is their size. The primary tumor rarely gets much bigger than a lentil–and generally those tumors seem to be buried where you wouldn’t be able to find them with your fingers the way we can detect a lump in the breast. The metastases do get larger–and do form in places you can detect them with your hands–but by that time you are in really big trouble–the kind of trouble that surgery can’t cure and that we have neither medicines nor radiation that can do more than slow things down for.

And finally, unless you really know what you are looking for, a normal MRI or other scan won’t turn them up. There is something called an octreoscan that will light them up like a Christmas tree, but not every place has the equipment or expertise to do it–and the doctor has to think to order the test. If he or she has not heard of NETs or carcinoid before–and many have not–remember, this is considered a rare disease–then they likely won’t know about this kind of scan, either. In any event, you can’t detect what you don’t suspect–and if you’ve never heard of the disease before–you can’t suspect something you don’t know about.

As a patient, you can’t give up. If you have symptoms without a real explanation, keep pushing your doctor until you have one. Remember, IBS is not a diagnosis.

12:51 p.m.

Here’s another great resource for information: http://www.thenetalliance.com/video.jsp?video=16

1 p.m. My stomach is growling

If you view only one Walking with Jane video today, it needs to be this one. It deals with frequently asked questions about NET cancer. Go watch it. Do it now.

I promise, nothing interesting is likely to happen here while you do. I am going to grab myself a quick lunch.

1:50 p.m.

After a bit of a break–and quick perusal of where we stand, I am back.

So far, we have 70 views on walkingwithjane.org, 528 likes on the Walking with Jane Facebook page, and 67 views of the NET Cancer FAQ video. I am not seeing much evidence of donations to the cause, but it does seem a lot of people are engaged in what we are doing at one level or another.

In the next hour, we’ll get a look at what people have to say about Walking with Jane. I hope some of you will chime in on that through comments. This is the video I should have edited before my depression on Friday. It might have helped.

2 p.m. What Walking with Jane means

I wonder, periodically, if what I am doing here matters. Self-doubt has plagued me most of my life–though those who know me may wonder at that statement. I always think about the ways things could have been better if only I had done something a little differently, played a particular moment a little smarter.

I don’t feel particularly brave about what I am doing. I’m just doing what I think anyone else in my position would do–only they would do it a lot better. My plan for today, for example, was to have 15-20 videos ready to go. Most of my day would have been just introducing the videos–and if I’d been truly on top of things all this written stuff would be going out as audio instead. And we’d have ten times this audience if only I understood how to leverage the internet better.

But there you are. Other people with more experience with this kind of thing tell me I am doing fine–that Walking with Jane is exactly what and where it needs to be at this stage in the game.

So for all of you who work on Walking with Jane and put up with my endless negativity–here is what two people in a position to know what Walking with Jane is accomplishing, think.

3:00 p.m. Hitting the Wall

I’ll admit, I am hitting a bit of a wall here on two different levels. The first is simply that I have been at this for eight-and-a-half hours now. My legs are stiff–yes, I’ve been getting up and moving around periodically, but it hasn’t helped much. And again, I feel a bit like I am functioning in an information vacuum. Am I writing for 50 people or 500 or more than that. I am closing in on 4000 words written and a whole bunch of other stuff posted, but I feel like I am slowing down somewhat. I need a shot of caffeine–but, alas, my doctor tells me I need to avoid that stuff.

All of that will pass in the coming hours. I’ve been here before–at the Marathon Walk, at Relay for Life–you just keep pushing through and eventually you get that proverbial second wind.

But I’d be lying if I didn’t say iI was a bit worried about some other things. Last year, Walking with Jane generated just over $100,000. Most of that money never saw the inside of our bank account. It went directly to the charities we support through things like the Jimmy Fund Walk. Other money was generated through a couple of two for one matches we were able to take advantage of–$30,000 when all was said and done.

Those opportunities have not presented themselves at the right times this year. Our giving has otherwise remained pretty flat. Most people would not worry about that. They’d say even a $70,000 total is pretty respectable–not that I am sure we will reach that number either.

But NET cancer is so underfunded that it worries me. My goal for this year was to generate $150-200,000. I’m pretty sure I don’t see that happening. Next year’s goal was to get to $300,000–and I am not sure how that is going to happen either. Our friends and family give what they can, and I am truly thankful for that. The local community could not be more supportive–and I am thankful for that as well. There is only so much one can raise on a spaghetti supper budget in a relatively poor community. And I have not yet figured out a way to reach either a much larger audience–or one with much deeper pockets. I suspect I need to figure out how to do both of those things if Walking with Jane is going to reach the full potential we envision for it.

I’m not giving up. We can’t afford that if we are going to reach the day I can stand at Jane’s grave and tell her NETs, carcinoid–or whatever people want to call it–is dead–and that no one is going to go through what she did at its hands ever again.

3:19 p.m.

Let’s talk a bit about the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. It is a thing near and dear to my heart. I got a call from one of Jane’s doctors the morning of her wake. He told me Jane’s case was the thing that pushed something they had been talking about for some time into reality. Dr. Matthew Kulke, who was not the source of that statement, heads up the program. He talks about the program in this interview I did with him on October 30.

4:00 p.m. Updating the numbers

Ouch. I just discovered the update at 3:19 got posted everywhere but here.

I just spent some time going back through the day and looking at the current numbers. After 10 hours on the “air” as it were, we are doing pretty well by some indications–and pretty poorly in others. Ninety-seven views on walkingwithjane.org; 110 views of the NET cancer FAQs; and 534 likes on the Walking with Jane Facebook page. Unfortunately, we only have eight outbound links so far–and only nine trips to the contribute page.

This hour’s featured video is from Jenaleigh Landers. She talks on the importance of fundraising and awareness.

5 p.m. Reflections

I just got off the phone with my father. He is 84. He lost my mother about ten months before I lost Jane. My mother died of Alzheimer’s. She had been dealing with it for years–did not recognize her children, did not recognize my father. Yet long after there was no hope he went to sit with her every day except when his own health forbade it.

It will be four years in February. He misses her every day. I worry about him–but not likely for the reasons most people think.

He is becoming physically frail. He says he cannot work for more than a couple of hours a day–that he has given up the yard work and some of the other things he liked to do because he just does not have the endurance for it. Those things concern me. But they are not the reasons I worry about him.

I worry about him for the same reason I worry about myself. He has lost the other half–the better half–of himself. It is a wound he has not recovered from–a wound I have not recovered from. We live, the two of us, alone with our thoughts. It does not matter how many people call, nor how full the room is with other people–we are separate–set apart, in away that defies description or imagining.

As much as I want to spare NET cancer patients from Jane’s end, I want to spare their widowed spouses from the grinding emptiness of this kind of loss. My father and I both knew there was no magic bullet for what ailed our wives, but we both did everything in our power to find one. We were realists about the likelihood of success but that did not stop either of us from trying–and being fully optimistic about the chances to everyone but our deepest selves.

People ask, sometimes, what it is like to be a widower. Until you have lived it, you can never know. Once you have lived it, you can never forget. The moment Jane ceased to breathe, the universe emptied and everything was changed. Food tasted different, the air smelled different, music I had loved sounded tiny and bland, colors became indistinct, and touch became both a craving and an intolerable thing. There is no answer for grief, nor any way to describe it that even hints at the reality of the thing.

There is a scene in All Quiet on the Western Front quite early in the book. It describes a gas attack and the quiet urgency of telling others what is happening. NET cancer is like that for me now. There is that same desperate urgency: this one must know because if he or she does not it may cost his or her life or the life of someone they hold in their hearts the way Jane and I held each other.

I want to buy each of you another year together–another quality year together. And if we can purchase you just one year, perhaps there will come a breakthrough that will buy another year, and perhaps another after that and after that and after that. I want you to have the years Jane and I did not–that I could not buy for her–or she for herself–at any price.

There are no riches that compare to the love of a spouse. It is a pearl without price that all the riches of all the rich people of the world cannot buy with all their material wealth. When it is lost to a death like this one, there is no replacing it.

Treasure what you have. Protect it as though your very life–your very universe–depends upon it–because it does.

6 p.m. 12 hours down, six to go

Several people have sent me messages in the last hour or two, encouraging me to hang in there. I will.

Sometimes, my frustrations make me a bit snarly. I can’t decide whether I am too stubborn or too stupid to quit trying. Ultimately, it does not matter which it is: NET cancer is going down. That decision is made. It was made long before Jane’s death–back when we both believed she would be the first to beat it and live to tell the tale.

Star Trek’s Captain Kirk is an amateur when it comes to rejecting no-win scenarios. It was in our DNA. And I don’t believe Jane lost her battle with cancer–she simply killed it in the only way that remained possible for her. Her cancer died with her. I did not like the way she beat it–but she did.

I still do not accept the idea of a no-win scenario. I still believe that my job is to take “no chance” and turn it into “a fighting chance.” That does not mean we will win every battle–sometimes we lose despite our best efforts. But saying we have no chance means the battle is lost before the first forces engage.

One of Jane’s favorite songs in the hospital was “The Gambler.” I can’t hear it–or even think about it–without tearing up. But there is a line in it that people often forget: “…Every hand’s a winner/and every hand’s a loser.” I don’t like the cards I’ve been dealt in this game, but I am determined to make the hand a winner.

Now speaking of aphorisms, Dan Hurley remembers something from Jane’s Wall of Wisdom that informs his life today. Go listen to him talk about it while I grab a bite to eat.

7:30 p.m. Fast times at Walking with Jane

Sorry if I seem to have vanished for longer than I said I would. The last 45 minutes has been pretty exciting. I took my laptop to the kitchen so I could keep an eye on things while I ate–and things sort of exploded from there.

Karen Merrill-Antle suggested we turn the things I’ve been writing into a book. While I am not sure there are enough words of substance here to do that, I do have two years worth of assorted essays on cancer and grief to fill out the requisite number of words. Karen also wrote something for her own friends on Facebook that moved me to tears. I will share that on Facebook later tonight, unless she objects.

We also went over 550 likes on the Walking with Jane page on Facebook. Some of those who have signed on are among the luminaries of the NET Cancer Community. I am humbled and honored by their presence. We are currently at 554. The 600 goal I set there this morning is looking somewhat more plausible.

walkingwithjane.org–the main site for the Social Mediathon–has received 130 views to this point, which is more than the minimum goal I set for it this morning, though the dream goal of 200–and a new record–looks increasingly like a stretch. Still stranger things have happened.

Finally, the NET Cancer FAQ video, which I have said before is the one video I really want everyone to watch for sure today, has had 156 views today. If you have not watched it yet, please do so now. The real point of this exercise is for everyone we can reach to come away with a greater knowledge of NETs and carcinoid cancer than they started with. A couple people have commented very positively about that video today. Go. Watch. Learn. It’s not like you can’t read the posts faster than I can write them when you get back.

8 p.m. Where did that hour go?

This becomes so much easier to do when people are commenting and sharing ideas and reactions. Thank you all for your comments and ideas. I’m trying to read them as they come up–which means I get a bit disjointed now and again. Of course that may be because I’ve been going at this since 6 a.m., as well. But keep those cards and letters coming folks. Like the Marathon Walk, we get to the finish because the entire community keeps moving us along. and the finish line for this marathon is under four hours away.

If you’ve been here all day, you’ve seen the links for our Walking with Jane Videos. They are not going anywhere after tonight. You can watch them any time  on our dedicated Walking with Jane YouTube Channel. You should really check it out–and leave the occasional comment for the elf responsible for their creation.

We’ve had more than 340 views of Walking with Jane videos so far today. We have 584 Likes on theWalking with Jane FB page. We have 153 views on walkingwithjane.org, with 11 outbound links. And we have three more hours to go before midnight. Share. Share. Share.

9 p.m. Broadening the focus

What I’ve presented today is the tip of the iceberg. In fact, Walking with Jane is a very small–and very young–piece of the iceberg that is out there searching for the Titanic that is NET cancer.

The Carcinoid Cancer Foundation  has worked on NET cancer since the late 1960s. They have an extensive site that is filled with information on finding a support group, finding a doctor, and understanding NETs and carcinoid cancer. They also have a YouTube Channel I subscribe to that has tons of videos–including videos of full patient education conferences. (You want a scary thought? Patients who attend these conferences or watch the videos of them often know more about NETs and carcinoid than their doctors–sometimes more than their oncologists. The standard joke is that anyone who has had carcinoid cancer for three months has the equivalent of a Ph.d in the subject. And I am not sure they are joking when they say that.)

The Caring for Carcinoid Foundation was founded in the early years of this century. They, too, have an extensive website, sponsor patient seminars, and sponsor teams in a number of larger walks, bike rides, and races. They have a large number of videos on their site that can further educate you about NETs and carcinoid cancer. Our Marathon Walk team is a joint venture with them. 

The organizing group for Worldwide NET Cancer Awareness Day is netcancerday.org. They coordinate a global effort to make everyone aware of this particular Zebra. This is the fourth NET Cancer Awareness Day. They catalog a huge number of events scattered around the world, put together the official photo album, and handle all the niggling little details that make this day possible, not only in the US, but around the world. Having been involved in the planning of a single Relay for Life, I am in awe of what this small group manages to pull off each year.

10 p.m. Do you know what our numbers are?

With two hours to go, here are the numbers: 606 Likes on Walking with Jane’s FB; 157 views on walkingithjane.org; 178 views of the FAQ video and total video views of 414.

By the end of this paragraph I will have written over 6200 words in  the last 16 hours–no wonder my fingers are getting cranky. Woof. My brain is getting mushy.

The Carcinoid Cancer Awareness Network is also major player in the US NET cancer community. While their website is not as big as some, they sponsor numerous patient conferences and staff a phone line for patients from 9 a.m. to 9 p.m. every day of the year. That phone is staffed by a patient or an experienced caregiver because they feel the person you talk to should be someone with real experience with the disease. www.carcinoidawareness.org/?

11 p.m. Winding down a long–but successful–day

We’ve rolled past 11 p.m. here in the East. A friend called me a little while ago to touch base and ask how things had gone here today–and I have to say, they’ve gone pretty well. I don’t know what the final numbers will look like–it is getting fairly late in the day and I suspect that most of the people who were here today were from the east coast, so I don’t expect any huge final numbers–but we seem to have hit most of the non-financial numbers I had in mind today. And frankly, donations were something I considered gravy from the start: today was about raising awareness, not money.

And by the measure of raising awareness, I think we did very well indeed. Lots of you knew what Jane died of, but very few of you knew much beyond the name. I had a lot of comments that suggest people’s eyes really got opened today about what this disease really is.

Knowing a thing’s name and knowing what it is are two very different things. For a significant number of people, that changed today where NET cancer is concerned. A bunch of people who did not know what to look for now have a better idea of what to pay attention to. They are in a better position to be advocates for their own care than they were a few hours ago. that knowledge may keep them–or those they love–alive a while longer.

And that’s a start well worthy of my time–and yours.

The question now is, “What do we do with this new knowledge?”

I’ve made a number of suggestions over the course of the day. First and foremost among theses has to do with being on the lookout for signs of NET cancer, but equally important is the idea that none of us should settle for a diagnosis in any event that is merely a symptom rather than a cause–regardless of whether we are facing NET cancer or something else. A list of symptoms–or a categorization of them into a “syndrome” like IBS is not a diagnosis. We need to be strong advocates for ourselves as patients.

But we also need to take steps as a community to create the resources researchers need to have to take on diseases as complex as NET cancer. We need, as Matt Kulke suggests in one video, to get NET cancer on the same level as some other forms of cancer that are perceived as bigger. While he won’t venture a guess on how big the problem actually is, we can be sure that the 110-125,000 diagnosed patients are the minimum size of the problem. With every advance in diagnostic techniques we find more cases of the disease that have been mistaken for something else. The average increase in diagnoses is running at about five percent a year.

Over the course of these 24 hours, about 34 people have died of NET cancer. That’s more than 230 a week–about 12,000 a year. That’s about the same number of people who will die in drunk driving accidents this year. We’ve all heard of Mothers Against Drunk Driving–but most Americans–nay, most American doctors–have never heard of NETs or carcinoid cancer.

Today has been about changing that reality. But it is only the beginning of trying to do so. We reached maybe 1000 people today with this social mediathon. We need each of those people to tell three others who will tell three others who will tell three others to begin to change the reality NETs and carcinoid patients face.

I hope all of you will join us in pursuing that task.

Midnight Last Call, Last Call, Last Call

We now have 622 Likes on Walking with Jane’s Facebook page; 173 views on walkingwithjane.org; 216 views of the FAQ video and 482 total views of all our videos. This ends the First Annual Walking with Jane NET Cancer Awareness Day Social Mediathon. Thanks to all who took part and helped make today a success. Let’s try this again next year.

Answering the mail

I got an email yesterday from someone who said they had stumbled onto walkingwithjane.org while doing research on something else. They wanted to report a broken link. That happens sometimes. I can’t police every link every day and rely on the kindness of strangers to let me know when something doesn’t work.

I look forward to a day when we will all look back at cancer as a thing from the past that once haunted our dreams…

But the writer’s reply asked that I consider including links to information about other forms of cancer–specifically mesothelioma and childhood cancers. Normally, I would not reply to such a request at all. I get many such requests–often from groups that, when I investigate them, I discover are less than stellar charities.

Carcinoid anger

I’ve been working for a couple of weeks editing material for the Social Mediathon Walking with Jane is doing Sunday on various social media platforms as part of NET Cancer Awareness Day and maybe that is why the request rankled me enough to reply to this particular request.

…if we do not catch this disease early–and we almost never do–there is no cure.

What follows is the text of my reply. I post it here because the writing of it forced me to think about some things I do here and the reasons I do them. Further, it gave me a chance to explore some of the issues about NETs and carcinoid that continue to frustrate me even nearly 35 months after Jane’s death.

Herewith, my reply–amended with subheads:

Carcinoid focus

They travel hundreds–sometimes thousands–of miles to find a doctor...

The carcinoid difference

We have no celebrity spokespeople talking up this disease…

I know I sound petty

Our entire focus is on NETs and carcinoid cancer

 The carcinoid truth

I…rely on the kindness of strangers…