All posts by walking with jane

Five years: reflections on NET cancer–Part 1

Fundraising, Goals, Marketing NETs, Uncategorized

Five years of unreached goals

I flew back from Seattle five years ago this weekend. On those flights, I set down on paper my plan for the first five years of my personal war on NET cancer. I’ve spent some time this week thinking about that plan and why it has failed in so many ways since.

…I was egotistical enough to think I could do better.

Part of it was my own innocence. I didn’t realize how steep the learning curve would be–nor how many things I would have to master to even begin to accomplish those goals. And I underestimated the depth and power of my own grief and how much it would cripple me. Things I thought would be easy have been anything but. And the things I knew would be hard have proven even more difficult.

Five years of raising awareness

The most basic goal was to work on awareness of the disease. I know how to get the word out about issues. I can write articles, make videos, imagine and create pamphlets. I’ve taught advertising and public relations. I know how all those things are supposed to work.

Part of it was my own innocence.

But just because you understand the theory of how that business works does not mean you understand how it works in practice. There are thousands of issues out there clamoring for attention. And getting people to pay attention to any one of those issues for even a fraction of a second has proven very difficult.

Five years of reaching out

I expected to educate three million people about NETs in the last five years. We haven’t come close. I’ve pieced together scripts for several public service announcements of varying lengths and have produced four of them. They exist on Walking with Jane’s YouTube channel and I’ve used them on our Facebook page. Fewer than 1000 people have seen them.

The most basic goal was to work on awareness…

I produced a pamphlet on NET cancer and Irritable Bowel Syndrome with the idea of getting copies into doctors’ offices across the country. Two local offices actually took them, but what they did with them I have no idea. I’ve used them any time Walking with Jane has done a yard sale or craft sale or other public event. And I’ve sent them to people who donated money to the cause. In five years, the total number of those pamphlets distributed is less than 500.

Five years of figuring things out

The Internet and Social Media seemed like another good avenue to educate people about the disease. Of all the things I have tried to do to raise awareness, my efforts there have been the most successful. In the just over four years since the launch of walkingwithjane.org, we’ve had about 20,000 people visit the website. Each person, on average, has read three or four items. That’s about 61,000 hits since the launch.

Fewer than 1000 people have seen them.

But the vast majority of the people who read walkingwithjane.org are people who already have been diagnosed with the disease or are caregivers for those people. The general public remains largely ignorant of NET, of carcinoid, of anything to do with the disease about 120,000 Americans deal with every day. I still have not figured out a way to break out into the larger population.

Five years of uncertainty

Unfortunately, no one else really has accomplished that either. Certainly, other blogs and websites have a bigger audience than walkingwithjane.org and our Facebook page have. But they, too, fail to reach a more general audience. None of us has figured out a way to make the jump from NET cancer patients and their caregivers to the general public.

The general public remains largely ignorant…

And we need to make that jump. We don’t really know how many people out there have this disease and don’t know it, how many cases of IBS are actually NET cancer, how many cases of right-side heart failure are caused by NET cancer, how many people die from NET cancer and are told something else killed them. When doctors don’t know to look for it–let alone suspect it–and patients don’t know even that it exists, we have a public health problem of unknown size and scope.

Five years of building research

The second problem I thought about on that plane trip home was the number of people working on NET cancer. The number at the time was tiny. I think it is better than it was, but I doubt there are 500 people in the world really working on this form of cancer even today.

…we need to make that jump.

Part of that has to do with the awareness problem: you can’t research something you’ve never heard of. But part of it has to do with a lack of resources. The year Jane died, we spent less than $2 million on NET research in the US. You can’t hire very many researchers for the kind of money. Things are better than they were five years ago, but I’m pretty sure I had very little to do with that.

Five years of building support

And money was the third piece of the problem. Somehow, we needed to raise an awful lot more money if we were going to come up with the people and the lab space necessary to get enough knowledge to begin looking for ways to cure NET cancer.

…I had very little to do with that.

My vision for what eventually became Walking with Jane was an organization that would address all three of these issues in ways they had not, to that point, been done as far as I could tell. I envisioned an organization with a broad national reach that would double what was raised for NET cancer every year for five to ten years until we had enough coming through multiple doors to make a substantial difference.

Five years of external obstacles

Yes, there were two organizations aimed at research and awareness, but they didn’t seem to be having much impact. And I was egotistical enough to think I could do better.

…money was the third piece of the problem.

I was wrong. Given the obstacles in their path, they were doing the best they could–the best anyone could. We weren’t talking about a cancer that regularly killed children; we weren’t talking about a cancer that killed quickly; we weren’t talking about a cancer that affected millions–at least not as near as we could tell. There is nothing sexy or exciting about NET cancer that will get a rise out of the general public.

At least not yet.

In order to raise awareness about NET cancer over the last five years, Walking with Jane has employed a number of different strategies. At last year's Relay for Life of Greater Fall River we set out 1500 NET cancer themed luminaria bags in several large herds around the track. Those herds were backed with informational signs about NET cancer.
In order to raise awareness about NET cancer over the last five years, Walking with Jane has employed a number of different strategies. At last year’s Relay for Life of Greater Fall River we set out 1500 NET cancer themed luminaria bags in several large herds around the track. Those herds were backed with informational signs about NET cancer.

Editor’s note: This is the first in a series of articles looking back on Walking with Jane’s goals over the last five years and setting goals and planning for the next five. 

End of year greetings and reflections

Goals, Grief, Holidays, Uncategorized

Time for reflection

Dear friends,

I face my sixth holiday season without Jane this year. I am not using “holiday season” to be either offensive or politically correct. Jane and I celebrated each of the festivals and holy days that mark this time of year in every faith and tradition. I still observe them all. I’d like to say it has become easier with time. It hasn’t–different, but not easier.

Have a blessed holiday season…

The end of each year is a time of both rejoicing and remembering. It is a time to look at the past and to plan for the future. I’ll spend many of the next days reflecting on the events of the year now ending and how those things connect not only to the past but also to the future.

A year of challenges

2015 has been a challenge on many levels. We lost my father-in-law, the last of our four parents, in September, one day before the ninth anniversary of his wife’s death. His body simply shut down over the course of about a week. His surviving daughter, Gail, broke her heel in the midst of that. Her surgery followed closely on her father’s funeral.

I still observe them all.

I also lost more than a few former students this year, the most recent barely two weeks ago. When people much older than me die, it is easier to accept. When a young person dies–especially one Jane and I held in our hearts–it is particularly difficult.

And I lost several friends I have made in the NETS community. Each one strikes me and reminds me of the urgency of the work I try to do every day. In my heart, I know I am doing all that I can, but I still wish I could find a way to do more.

A year of growth

Walking with Jane continues to grow in influence, if not in size. By the first of the year, we should have over 24,000 hits for 2015 on the website–an increase of nearly fifty percent over last year. We have directly generated nearly $95,000 in funds for research and awareness–though most of that money never passed through our coffers–and helped to launch 3-in-3: The Campaign to Cure NET Cancer at the Dana-Farber Cancer Institute in Boston on December 9. Next year looks likely to continue to build on those efforts.

…I lost several friends…

Personally, I’ve navigated some difficult waters this year. But I’ve also done a number of things outside of NET cancer I am pleased with. I taught for six weeks this summer at the New England Center for Investigative Reporting’s summer program for high school students at Boston University–a thing I thoroughly enjoyed despite the long daily commute.

I continued my ongoing landscaping and interior decorating projects, have decided to get back into serious photography–the one visual art I seem to have any small talent for–read more novels than I can count, pretended to play some golf, listened to some live music, and witnessed the completion of the initial loop of the topiary heart I restarted after Jane’s death. Tomorrow, they put enough solar panels on the roof of the house to generate all the electrical power I currently use in the course of a year.

A time to heal

I am not yet fully healed from the events of five years ago. Honestly, I don’t think I ever will be. But I am hopeful in ways I have not been for a very long time. This season of the year is about rekindling the fire in our lives and beginning anew the things that define us.

…a thing I thoroughly enjoyed…

I think I am ready for that this year.

I hope you and yours are as well.

Have a blessed holiday season–regardless of your faith or lack of it–and a glorious New Year. As a friend once put it: A year of new light–let it shine.

Pax et lux

Harry

This was th earth topiary heart completed its journey. My own heart continues to rebuild itself. Our original topiary art was the only plant we lost during Jane's time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.
This was the year the topiary heart completed its journey around the mold. My own heart continues to rebuild itself–as fragile as the single strand that forms the topiary circuit, but growing stronger every day.

Campaign takes first steps forward

Uncategorized

Campaign’s initial acts

We had a long meeting at the Dana-Farber Cancer Institute yesterday afternoon about the next steps for 3-in-3:The Campaign to Cure NET Cancer. Walking with Jane will play a significant role in developing the initial social media side of things, while also providing support materials like pamphlets and pins.

There’s lots of work to do on this.

Initial response to our new NET Cancer pin has been good and we hope to make those more broadly available over the course of the next several weeks. Our new NET Cancer FAQ pamphlet goes to press shortly–and those, too, will be made more broadly available in the coming weeks.

Tying things together

January 5 is the launch date for next year’s Boston Marathon Jimmy Fund Walk. Money raised in that event by NET Cancer teams will count toward the Campaign’s financial goals, as will money raised by NET Cancer teams in the Pan Mass Challenge. I am going to try to get the captains of all those teams together to talk about ways we can help each other raise even more money through those events.

Walking with Jane will play a significant role…

We will encourage people to use #cureNETcancernow as a means to gather social media posts on the campaign and its activities in a single place on both Twitter and Facebook. Walking with Jane will launch the social media side of things with a series posts about what we are doing every day to cure NET cancer. We will also encourage others to do likewise.

Working for impact

Think about the impact we could all have if every researcher, every caregiver, every patient did just one thing every day to cure NET cancer. And many of us are doing that already. What we are not doing is sharing what we are doing every day. Think about the impact on awareness if we could make #cureNETcancernow a trending phrase for even one day on Twitter.

#cureNETcancernow

We will make the 3-in-3 Giving Page on the DFCI website dynamic by changing the copy there on a regular basis and by adding a feature where people can see the overall progress of the campaign in addition to what has been donated directly on that page, since events like the Walk and the Walking with Jane Fund Giving Page and other DFCI NET cancer oriented funds will count toward the campaign’s financial goals.

Building on the wave

We’ll begin working more diligently to find corporate sponsors as well as new individual donors after the new year. To that end, we are working on presentations of various kinds aimed at different kinds of groups. We already have two patients who are willing to talk about their experiences, in addition to me and the researchers at Dana-Farber.

Think about the impact…

I’ll also be working on a new series of 15-30-second videos for use as public service announcements in the coming months. That will start with updating some I did last year.

Once and future campaign planning

There’s lots of work to do on this. I hope many of you, especially those in the Northeast, will pitch in in any way you can. This is an opportunity to begin working on one of the goals I suggested last year–building a national awareness and support for NET cancer research by building on the regional cancer centers. In late December, I plan to revisit those ideas and see where we are on each of them.

…a new series of 15-30-second videos…

But that is a project for another day.

(Editor’s Note: Those of you who follow my posts here on a regular basis know this has been a busy and difficult few months for me. Between the five-year anniversaries of Jane’s last months and my work on this and other projects, I am mentally and physically exhausted.  One of my brothers arrives tonight from the West Coast. I’m taking the next week off to spend time with him and engage in a little rest and recreation. I’ll check in on social media and here periodically, I suspect–but I’m largely taking a vacation for the next week.)

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer.
Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer.

Campaign to Cure NET Cancer Press Release

Fundraising, Goals, Marketing NETs, Uncategorized

For Immediate Release

Dana-Farber announces campaign for little-known cancer

Every 35 minutes someone is diagnosed with a potentially deadly cancer most people have never heard of.
Every 43 minutes, someone dies of that same cancer.
The Dana-Farber Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors announced a new fundraising initiative December 9 to take on that little-known form of cancer that affects about 120,000 people living in the US.
3-in-3: The Campaign to Cure NET Cancer aims to raise $3 million over the next three years for research aimed at finding a cure for the disease. Currently, unless the cancer is discovered early—before it even becomes symptomatic–there is no cure for the disease.
And while it is slow-growing and many people live for many years with it, in some cases it can cause debilitating symptoms. Patients can suffer as many 20 diarrhea episodes a day, frequent insomnia, and blood pressure and heart issues.
The Program in Neuroendocrine and Carcinoid Tumors at DFCI is at the forefront of international efforts to understand and cure the disease. It developed new drug therapies for pancreatic NETs—the cancer that killed Steve Jobs—that the FDA approved in 2011.
Program researchers also helped develop and test telostristat etiprate, a new drug that was recently tested in a successful Phase 3 trial reported this fall that many anticipate will lead to speedy FDA approval.
Program Director Matt Kulke, MD, told those at the launch event at DFCI that, following the recent development of new neuroendocrine models that will enable the rapid identification of new targets and testing of new drugs, the program is now poised to make an even bigger impact.
“We are in a truly unique position at Dana-Farber,” Kulke said. “Not only are we a leading neuroendocrine tumor center, but here at Dana-Farber we also have the opportunity to apply the latest technology and work with the top cancer researchers in the world to go after this disease.”
NET cancer research has never been well-funded compared with other cancers. Funding for basic research and initial drug development in the US was likely less than $2 million in 2010.
 
While funding has improved since then, at under $10 million it still does not amount to a rounding error on what is spent on research into more well-known cancers in the US.
 
Walking with Jane founder Harry Proudfoot, who gave the welcoming speech at the December 9 event, said the campaign is part of an effort to change that. Proudfoot lost his wife to the disease in December, 2010 and has been active in NET cancer circles since then.
 
“People say you can live a long time with this disease,” he said. “That may be true. But what matters is both length of life and the quality of that life. If you are spending your days on the toilet and your nights staring at the ceiling waiting for sleep that never comes, that’s not much of a life.”
Donations can be made at the Campaign website at http://www.myjimmyfundpage.org/give/33nets
For further information, contact Harry Proudfoot at walkingjane@gmail.com or 508-674-0279.

The text of Proudfoot’s remarks at the kick-off are available here.

Photographs with captions:

Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.

 

Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.
Dana-Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015.

Warrior song: The 3-in-3 campaign at DFCI

Fundraising, Goals, Grief, Jane, NETwalkers Alliance

(Editor’s note: This is the text of the speech I gave December 9 at the Dana-Farber Cancer Institute as part of the kick-off for 3-in-3: The Campaign to Cure NET Cancer. The subheads were not included in the speech. They are used here as graphic devices to break up the page.)

Introduction of the night’s program 

My name is Harry Proudfoot. I am the founder and president of Walking with Jane and a member of the Visiting Committee for Gastrointestinal Cancers here at Dana-Farber.

I want to welcome all of you to this kick-off of 3-in-3:The Campaign to Cure NET Cancer—a campaign we hope will be a real game-changer for all of you here—and for all NET cancer patients and their families everywhere.

…I dream of the day…

Later in the program, we will hear from Dr. Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors and Dr. Jennifer Chan, who is the clinical trials director for the program. They will talk about the science and the concrete goals our support makes possible.

Jane’s story

But tonight is a truly bittersweet moment for me. Five years ago tonight I was in a hospital room with my wife. She’d gone into a coma about 10 that morning—a coma induced by her fourth and final carcinoid crisis following surgery to replace the valves in the right side of her heart that her cancer had destroyed.

…a real game-changer…

Just before 6 p.m., Jane regained consciousness for a few minutes. I had to tell her there was nothing more her doctors could do—that we were taking her off the machines that were helping her breathe, taking out the feeding tube, and shutting down her pacemaker so that she could finally die.
 “You’re going home to the garden,” I told her. She closed her eyes and I kissed her forehead. “Good night, my warrior princess,” I said. That’s the last thing I know she heard me say. I read to her, I sang to her, I talked to her, and I held her hand—but how much she was aware of after that….

The warrior princess

Jane was a warrior against ignorance all her life. She taught science—as I taught English—in a school that educated the working class children of a small town. We stayed there because we believed they deserved as good an education as anyone else got.

…she could finally die.

And when Jane was diagnosed with NET cancer, she became a warrior against it. She was determined to be the first person to beat it, but she was equally determined to end our ignorance of the disease and how it worked. She faced her life and her death with a singular kind of courage.
She died just before 8 p.m the next night. There was a slight catch in her breath—and she was gone.

Warrior days

Two days after we buried her, I went back to work. I was a teacher—and my students needed me. But Jane and I had decided well before she was diagnosed that we would retire from teaching that June—and I kept that promise.

There was a slight catch in her breath…

But I had made another promise—that if she killed her advanced disease the only way anyone ever had—by dying and taking it with her—that the battle against it would not end for me until it was dead.
I went to Seattle to be with my family that Christmas. On the plane out, I drafted my first NET cancer pamphlet. On the plane home, I drafted my plan for attacking the funding and awareness issues that had made Jane’s death inevitable—and that still plague our efforts today.

Warrior work

On the night of what should have been our retirement dinner, I spoke at the local Relay for Life and walked through the night in Jane’s memory.

But I had made another promise…

That fall, I walked the length of the Boston Marathon course for the first time. I raised nearly $5,000 for NET cancer research—far more than I expected. In December, I pledged $100,000 over five years to support the small but growing program at DFCI. Tonight, I make the final payment on that pledge—and renew that pledge for the next five years.
 But I don’t just put my money where my mouth is—I put my labor there as well. I’ve captained four Jimmy Fund Walk teams that have raised an additional $175,000 over the last four years. I’ve put together pamphlets, a website for Walking with Jane that averages nearly 2000 visits a month, and served the NET cancer community in every way I’ve been able to think of—including asking everyone I know for money.

The dream

I do that in the hope that my friend Jillian will see her two four-year-old sons graduate from college and dandle their grandchildren on her knee. I do that in the hope my friend Andrew will have the same experience with his pre-teen daughter. I do that so my friend Kara can dance at her teenage son’s children’s weddings.

…I don’t just put my money where my mouth is…

And I dream of the day I can stand at Jane’s grave and say, “It’s over—it’s dead. No one ever has to go through what you did for 30 years—the insomnia, the stomach pain, the bloating, the diarrhea—NET cancer is well and truly dead—and we played our part.”
I truly hope you will all join with me in making those dreams a reality.
Thank you.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.

Introduction of Jennifer Chan, MD

Now, it is my honor to introduce Jane’s oncologist, the director of clinical trials for the Program in Neuroendocrine and Carcinoid Tumors, Jennifer Chan, who holds a very special place in my heart.
I can’t speak to Jen’s feelings when she first met Jane. But for Jane, it was as though she were meeting her sister. Jane was a very private person. It took me years to get where Jen was after two minutes.
But Jen is a very special kind of person. Jane was exhausted that night. We were in bed reading at 8:45. Then the phone rang. It was not a telemarketer—it was Jen—and she had a plan.
When Jane was in the hospital, Jen spent part of her lunch break with us seemingly every day. On Thanksgiving, she put the turkey in the oven and came to see us.
And on the last day of Jane’s life, she sat with us—both during her lunch and before she left for the day. She said she saw patients in clinic that day, but her heart was in the room with Jane—and with me.
I could tell you about Jen’s background, her colleges, degrees and accomplishments—but the most important thing I can tell you is she is wonderful, intelligent and creative human being who brings love and passion to whatever she does.
Ladies and gentlemen, my very dear and very good friend, Dr. Jennifer Chan.
(Editor’s note: Please help spread the word on this campaign by sharing this speech and the press release that will follow shortly. When the slides from Jen and Matt’s presentations become available, I will pass those along as well. Contribute to 3-in-3: The Campaign to Cure NET Cancer.)

Final Thanksgiving, final days

Fundraising, Grief, Jane, Treatments, Uncategorized

(Editor’s Note: My apologies for a long gap between posts here. I’ve been busy working with the people at Dana-Farber on a new fundraising campaign to raise money for NET cancer research there.)

Thanksgiving Eve

Thanksgiving five years ago was both the best and worst I’ve ever had. It was the best because, despite a life threatening coma that had ended two days before, Jane was alive and seemingly well. The night before had been difficult. My simple presence in the room seemed to be having a bad effect on Jane’s state of mind–and on her physical health as a result.

…it has to be done.

At about 10 p.m., the medical people sent me down the hall to sleep in another room. “If we need you, we’ll come get you–and if we do, you’ll need to be sharp.” The words were not comforting, but Jane and I had insisted they be brutally honest at all times about Jane’s condition and prognosis.

Thanksgiving sunrise

I slept very little that night. Mostly, I waited for sunrise. I knew, somehow, that if the sun came up and no one had come to get me, things would be all right. And they were.

The words were not comforting…

I called the front desk. They said to come over when I was ready–that things were better. I walked down the hall and turned into her room. Jane was sitting up in the bed. She turned to me and smiled. “I love you hubby.” And then I was in her arms–and we were happy.

The best of times, the worst of times

Friends brought her father and sister to visit that day. When they left, I went downstairs and found a cup of pumpkin soup. By the time I got back, Jane’s chicken broth had arrived. That was our last Thanksgiving dinner together. We watched the Patriots beat the Cowboys and Jane fell asleep. Jane thought this was the final brightening in her family’s tradition. I had hope it was more than that–but we had squeezed out one more Thanksgiving.

…and we were happy.

And that was why it was the worst Thanksgiving–because it was the last. It haunts me to this day. Twenty-four hours later, she had another carcinoid crisis and went into another coma. I spent Saturday morning agonizing over what to do: should I let her go? Was there still a fighting chance?

Decision point

A friend came up that morning and Jennifer Chan, her oncologist, came in a little later. They convinced me that there was one more card to play: a massive dose of octreotide that would run the hospital’s supply to zero and deplete supplies elsewhere in the city as well.

It haunts me to this day.

Six hours later, Jane was awake–and both surprised and delighted to be there. Thanksgiving was not a false renewal after all. She was going to go home–not for Christmas, she knew–but in time for us to spend February vacation in the room overlooking the lake we had spent the last night of our vacation at in August.

The dream–and the nightmare

We lived for that dream for almost two weeks. Doctors put in a pacemaker, friends visited, we watched television together. We even argued once or twice–the kind of arguments people who have been married and love each other have when things are going well.

…one more card to play…

Five years ago today, things started to go to hell. Jane wanted to get out of bed to use the bathroom, wanted me to carry her there. I couldn’t–she had a feeding tube and all kinds of monitors that limited that kind of thing. If she wanted to sit in a chair, she had to be lifted with a small crane.

Into the night

She wanted me too take her home. I told her I couldn’t–not yet. She needed to stay her and get stronger. “I want to go home,” she whispered.

…things started to go to hell.

She did not sleep that night. I should have known then something was wrong. But I was tired. I was cranky. I hadn’t slept in a real bed in nearly three weeks–hadn’t really slept well in months. At least, those are the things I tell myself.

The final crisis

In the morning, the nurses sent me to have breakfast. I brought it back to the room with me as I sometimes did when Jane seemed to want me close at hand. We moved her out of the bed and into a chair. We watched two episodes of Frasier and Jane started nodding off.

She did not sleep that night.

The nurse came in and asked her if she wanted to take a nap. Jane nodded. We put her back to bed and she fell asleep. I sat next to the bed, holding her hand while I read something. An hour went by. The nurse came in with a blood pressure cuff. She said the sensor didn’t seem to be working right. This was not abnormal. Jane’s arms were so thin things didn’t always work right.

The hospitalist

Nurses have great poker faces, but spend enough time with them and you can tell when something isn’t quite right–and we’d asked for honesty. She went to find the hospitalist. He came in and ran through Jane’s vitals. We all knew by the time he was finished that Jane was in a coma. And I knew what that meant.

An hour went by.

He left to call Jen. He came back a few minutes later. “There’s nothing left to try,” he said. ” We promised honesty. We can keep her alive–maybe even bring her out of the coma. But there will be another–and she’ll just keep getting weaker. She’ll never come off the machines again–and we both know she doesn’t want to live that way.”

Keeping promises

The fighting chance had turned into no chance just that quickly. And I knew he was right–this was not how Jane wanted to live. I had promised her I would let her go if–or when–the time came. And I would do it beautifully and with honor.

‘There’s nothing left to try.’

We would start taking her off the machines in the morning, he suggested. That would give me time to gather some friends together to be with us at the end. And if she woke up, I needed to tell her what was going on. It was the hardest thing I’ve ever done–and I don’t think I did it very well.

Building the future

I will give a speech tomorrow night as we launch a fundraising initiative with the people at the Dana-Farber Cancer Institute. I’ll talked about Jane’s final days and hours. I’m not sure I’ll get through it without a cascade of tears. But I’ll do it because, just like letting Jane go, it has to be done.

…I don’t think I did it very well.

It has to be done so that someday there won’t be a need to tell her story again; so that someday no one will have to suffer what she did; so that someday no husband or wife will suffer what I–and so many others–have suffered because of this disease.

May that day come soon.

On Thanksgiving, I gave thanks for what Jane and I had together. But one day I want to be thankful that no one else will die from the cancer she fought. Jane made a series of decisions that have made a difference in the lives of others. The decisions you make may have a similar impact.
On Thanksgiving, I gave thanks for what Jane and I had together. But one day I want to be thankful that no one else will die from the cancer she fought.

 

Giving Tuesday: not your normal request

Fundraising, Uncategorized

An odd Giving Tuesday request

Were we a normal non-profit, today’s post would be about donating to Walking with Jane on this Giving Tuesday so we could continue doing what we are doing in the style you have become accustomed to. But there is very little normal about Walking with Jane. No one gets wages or salary for what we do here. What few expenses we have–hosting for the website, postage for fundraising efforts, stationary, and the odd gathering of volunteers–come out of my pocket. I don’t even take a deduction on my taxes for those things.

…what Walking with Jane aspires to be…

The money we raise goes to largely the Program for Neuroendocrine and Carcinoid Tumors through the Walking with Jane Dybowski Fund at DFCI, with a substantially smaller amount going to the American Cancer Society through the Relay for Life of Greater Fall River.

Giving priorities

I make substantial personal donations to both those groups, as well as to the NET Research Foundation (formerly known as the Caring for Carcinoid Foundation) and the Carcinoid Cancer Foundation. I also personally fund scholarships in Jane’s name for perspective science teachers and people entering the medical field at both Westport High School and Bridgewater State University.

…very little normal about Walking with Jane.

It’s not that I am a wealthy man. I have a roof over my head and a car in the garage–both of which are mine and not in hock to some bank somewhere. And I live frugally: I bake my own bread, cook my own meals, and raise my own vegetables; I mow my own lawn and do as much of my own maintenance as my body and skills will allow. And except for the bread baking, Jane and I always lived that way.

Giving Tuesday investments

But there are things worth investing in–even if I never see a dime of profit from it. It was why Jane and I taught high school students–and why we taught where we did. It is why I make the biggest donations I can in NET cancer research and awareness.

It’s not that I am a wealthy man.

And it is why I am asking you to do likewise today. The fact is we spend far too little on NET cancer research–spend far too little on raising awareness of the disease among doctors and the general public. The fact is that while we are spending significantly more than we were five years ago, we still do not spend what amounts to a rounding error in what we spend on lung cancer or breast cancer–or any other cancer with more name recognition.

Research giving

The Program for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute has been at the cutting edge of NETs research for the last several years. I’ve worked with them extensively and I know the quality of their program and their people. I haven’t worked enough with other NCI cancer centers with similar programs to have an opinion about them, but if you have, giving some money to them today would also be a good thing.

…there are things worth investing in…

Outside of Dana-Farber, I rely on the NET Research Foundation to find NET research projects worthy of support. They have the science advisory board I wish Walking with Jane could put together. And every dollar donated goes to support real NET cancer research. The salaries of their full-time staff and other expenses are funded by other sources–not your donations. They are what Walking with Jane aspires to be on the research support side.

Awareness giving

Finally, the Carcinoid Cancer Foundation does more to raise awareness and provide patient and medical resources in a month than Walking with Jane has done in the last two years total. Need a doctor? They are the ones to ask. Need a support group? They are the ones to ask. Need someone to talk to? They cover that as well. They are what Walking with Jane aspires to be on the patient support and awareness side.

…what Walking with Jane aspires to be…

NET cancer research and awareness need your financial support–and these three groups deliver. Please, join me in supporting one or more of them today.

Please consider giving to this effort.
Please consider giving to this effort.

Jane and the second carcinoid crisis

Death, Grief, Jane, Uncategorized

(Editor’s Note: I will preface this as I did the last post: if death and mourning are not things you want to confront, don’t read what follows. Caregivers will likely find it more useful than patients. I will also say this is not the piece I planned to write this morning. But the memories of Jane in her second crisis refused to leave me alone until I set them down here. Whether they will now let me be or not remains to be seen.)

Breathe with me…

Five years ago Sunday I sat with Jane in her hospital room. She was in the midst of her second post-operative carcinoid crisis–though I did not know it at the time. My normal habit was to meet with her doctors as they did rounds outside her room. But there was something wrong with Jane’s breathing and I didn’t want to leave her.

“They told me you had a fighting chance…”

“Breathe with me and stay with me,” I chanted over and over again as I held her hand. The doctors moved down the hall to the next patient.

Something isn’t right

Six days earlier, during Jane’s first crisis, one of her nurses said to me I was only allowed to panic if she did–and that since she wouldn’t panic, I wouldn’t either. So when there was a catch in Jane’s breathing now, my voice was calm as I called to the doctors and nurses from her bedside, “We need some help. Something isn’t right here.”

I didn’t want to leave her.

The room was filled with people in an instant. They moved me behind a screen so they could work. That’s when my mind came unglued. But I fought it off. I knew I needed a clear head.

The grays in DNR

Jane had a DNR and we both thought that was a pretty black and white thing. But when the came through the screen I was immediately confronted with how many shades of gray exist between life and death.

 “We need some help.”

“We know she has a DNR,” he told me. “But we think we know what is going on right now and we think we can fix it. But we have to intubate to buy the time we need to do that. If we’re wrong, we can take the tube out and let her go the way she wants to then.” Simplicity died in those three sentences.

The decision I made

I come back to that moment over and over again. Knowing what I know now, I should have let her go. But I didn’t know any of that. I knew her doctor and knew we both trusted him. I knew Jane and I both believed in the concept of a fighting chance. That seemed to be what I was looking at.

Simplicity died in those three sentences.

I told them to her. I told them to do what they needed to do. I told them if it didn’t work, we’d take the tube out and let her go.

Uncharted waters

Five years ago yesterday morning, Jane was still in a coma. Her breathing and blood pressure were stable. There was an octreotide drip in her arm slowly rolling back the over-supply of serotonin that had generated her collapse. I held her hand and talked to her, not sure she could hear or comprehend any of what I was saying.

I told them to intubate her.

At 10 a.m., I met with her doctors, the nurse on duty when Jane had crashed the day before, and a social worker. We talked about what they thought was going on, about who Jane was and what she would want. The told me they were in uncharted waters in some respects.

What would Jane do?

I thought about Jane, the scientist, as I listened to them talk. I thought about Jane, the compassionate human being, as I listened to them talk. And I thought about Jane, the person, as they talked.

…Jane was still in a coma.

The scientist would want to learn all that she could–help the doctors learn what they could. The compassionate human would want them to learn all they could so the next patient would have an easier time of it. The person would want her dignity.

The backdrop

That dignity had been sorely tried throughout the previous weekend. She had had multiple massive diarrhea episodes that overflowed the bed pan and left her soiled and humiliated. I had been out getting something to eat when the first hit. They would not let me into the ICU until it was cleaned up.

The person would want her dignity.

By the end of the weekend, I was helping change her night-clothes and bedding, holding her on her side as the nurse cleaned and salved her bottom. I remember thinking at one point that I was changing her using the some of the same techniques and dispassion I’d used when I changed the diapers on my younger siblings as a child.

ICU psychosis

The thought made me shudder. I hurt for her every time but carefully kept it out of my voice, face, and manner. I knew where I needed to be–where Jane needed me to be–and knew I could only stay and do those kinds of things as long as I stayed professional in my actions.

That dignity had been sorely tried…

Somewhere in there, Jane lost her mind. There is a thing called ICU psychosis. You can read about it–but reading it and seeing it are two different things. Jane told me the doctors and nurses were trying to kill her, lied to them about how often she was doing her physical therapy–and at times seemed to suspect I was in league with them.

Balancing act

I still don’t know how to balance the things that went through my mind that Tuesday morning. I told the doctors, nurses and social workers about Jane’s vow to be the first person to beat this form of cancer–and my vow to do all I could to help her do that. I forced my emotions down and tried to be logical–to look at the evidence I had and make a decision based on that.

The thought made me shudder.

But there was the voice of the scared little boy in there screaming over and over and over, “Don’t let her die, don’t let her die, don’t let her die…” The voice of reason agreed with the little boy–at least for a few more hours. The doctors and nurses were seeing signs that what they were doing was working. For now, the fighting chance remained–and I would not deny her that chance.

The bedside

Only those who have sat at the bedside of a loved one in a coma understand what those hours are like. There is so little you can do: you hold their hand, you talk to them, you read to them. Periodically, a nurse, doctor, or therapist comes in and you try to stay out of the way while they do what they do. They take blood, listen to the heartbeat or breathing, change a medication bag…

I forced my emotions down…

You know they are doing those things–that sometimes they move you from one side of the bed to the other–but you are aware of nothing but the person on the bed, their unresponsive hand in yours, the steady pulse of their breathing. Sometimes they send you out to get something to eat or to take a walk–but the whole time you are gone your heart and mind never really leave the sickroom.

Waking up

Jane woke up early that evening. She was immediately angry at me because of the tube going down her throat. “Stop,” I said. “They told me you had a fighting chance–and I gave it to you.” She relaxed then and I took her hand. Neither us knew how hard the next 36 hours were going to be, nor how hard the next few weeks would be.

There is so little you can do…

For the next few hours, though, it was peaceful.

Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress--or at least it cannot be allowed to prevent progress.
Jane still lives in my heart. No month goes by that is not filled with memories of our life together.

Jane’s 61st Birthday: a Heart Meditation

Death, Grief, Jane

(Editor’s Note: Jane’s birthday was on November 17. I have debated since then how broad an audience to send this to–or whether to post it at all. If you are uncomfortable reading about death and mourning, you may want to turn away now and read no further. But if you are a caregiver, what is here may matter to you. If you are a patient, it may help you understand what your partner faces now–and may face later.)

Road trip

Jane would have been 61 today. She would have awakened to cards and flowers and gifts and a poem and breakfast in bed. Later, we would have driven to southern NH to look for Christmas presents and browse the shops. We’d have had lunch in a restaurant we stopped at whenever we were there, then travelled home for a quiet night snuggled on the couch.

If the heart is healed, can the soul be far behind?

Instead, I went to the cemetery where her body is buried this morning. I left some mums there and a card and some tears. I was angry when I left—and sad.

Clearing spaces

Five years is a long time to be in mourning. Five years is no time at all to be in mourning. I’ve lived alone a long time, slept alone a long time, cooked and eaten meals alone a long time.

I was angry when I left—and sad.

This weekend, I started cleaning out the basement. It is where I have stored the things I am not ready to part with. Yesterday, I took the collages of our life together off the walls in the living room and moved them into the guest room. In a few days, I will unpack the suitcase she took with her to the hospital five years ago. It is filled with the clothes she never wore and the clothes she was wearing the day we checked her in for her heart surgery.

A new heart

I don’t know why it is suddenly time to do those things—just that it is.

I’ve lived alone a long time…

Five years ago, we celebrated her birth–and rebirth–in a hospital room in cardiac intensive care. She told the doctors and nurses she had gotten a new heart for her birthday, even though what she really had were two new mechanical valves in the right side of her heart. The plan was for her to move to the step-down unit the next day. She was happier and more upbeat than I had seen her in months.

A different road trip

I should have known…

…we celebrated her birth–and rebirth…

That night, she had her first carcinoid crisis. Her blood oxygen levels fell into the mid 80s, her blood pressure dropped. The doctors and nurses decided she needed a CT scan. But the scanner in the building had closed for the night. The closest one was in a nearby building on the eighth floor. Jane declared she was ready for a road trip—and off they went.

Raised hopes

The scan was inconclusive. Her oxygen numbers came up once she was back on oxygen. Her blood pressure stabilized. I stayed up with her all night and all day the next day. She was weaker than she had been, but she seemed to have turned the corner.

…she had her first carcinoid crisis.

I went back to the hotel and slept for six hours, checked out and moved my car to the hospital. I expected to drive home that night.

Dashed hopes

I did not sleep at home again until after Jane died three weeks later. I barely left her side.

The scan was inconclusive.

Five years later, my heart still bleeds. I get up every morning, I make the bed, eat, do all the necessary things from showering and shopping to reading and writing. Sometimes, as I work on this or that project I can almost forget that Jane no longer breathes, almost forget she is not simply out with her sister.

Small joys–and constant reminders

Then I look up and know she is not there—that her body rests three miles away beneath her family headstone. And then the silence closes in and it is as if she died just moments ago.

I barely left her side.

I debate moving periodically in the hope that some new place will not be so haunting. And then I remember my trips to Seattle since her death, I remember the nights I’ve spent in hotel rooms on one trip or another, I remember being at parties or dinners where the silence comes rolling in—and I know that where I live will not change this grief–that to leave here will only cut me off from the small joys of our life together here—only deepen my grief.

An evolving heart

I remember a friend who lost her father when we were still in junior high school. I remember visiting her home perhaps four years after his death. There may have been some pictures of her father in her mother’s bedroom—or in her own. There were no pictures in the public sections of the house. They did not surround themselves with memories. The house evolved.

…I remember…

Perhaps that is what I am doing this week. Perhaps I am evolving toward some final acceptance that Jane is gone and that my life needs to be about more than her absence—and about something more than the cancer that killed her.

Touching hearts, mending souls

Not that I have not done things other than deal with her death and her cancer over the last five years. But whether working in the garden, reading a novel or a biography, listening to music, or going out to dinner, a play, or just for a cup of coffee with friends, those things are never far from my thoughts.

The house evolved.

Nor will I give up the work against her cancer—I know too many people who have become friends who have NET cancer to walk away from that fight in mid-stream. It will die and I will have a hand—as big a hand as I can manage—in its demise. I owe that not only to Jane and the doctors who worked with her, but to every patient whose life has touched mine in the last five years–and every patient who will touch mine in the years ahead.

The cruelest months

I have no illusions: I will grieve Jane’s death until the last instant of my life. But I need to define myself as more than the grieving husband—the grieving soul mate.

…I know too many people…

The months from August to December have always been hard since Jane’s diagnosis and death. Every day holds a new trigger for grief. And this year their power is greater than ever before. The tears have come daily for the last week. My mind reels from memory to memory.

The heart of things

Yet, in a part of my soul, I know that I am letting go of Jane in a way I have not done until now. I know she is reborn in a new body that does not remember the life we shared together, that is preparing for the new work before her.

The tears have come daily…

And I still have work of my own to do. It is work shaped by the work we had together, shaped by our lives and our deaths—and especially her death in this lifetime. I have pressed forward with that work despite her death and my grief, but my grief has kept me from doing the best I am capable of.

When the heart begins to listen

I have moved forward but I cannot truly move forward until I come to terms with the fact she is dead—that I will never hear her voice again or feel her in my arms. I know it in my head but my heart has refused to listen.

…I still have work of my own to do.

Or maybe it has. Beginning to clear out the basement was not a conscious decision. I went down to put the laundry in the washing machine and, having done that, started cleaning.

The heart moves forward

Taking her pictures down in the living room was not a conscious decision—I saw a way to make the room work a little better by moving three pieces of furniture. When I was done, the collages felt too big for where they were. I took them down and moved them without thinking about it more than what it took to do it.

…my heart has refused to listen.

This morning, I knew it was time to unpack that suitcase—but it is in a closet I can’t easily get at. Once I can, the die is cast.

The topiary heart

Some time back, I wrote a piece about a topiary heart Jane had grown after we were married. It was the only plant that died while we were in the hospital. I discovered another ivy that had somehow survived the neglect that month in another pot.

…the die is cast.

I salvaged the heart form and began a new topiary. This week the sprouts completed the form. The heart is but a single strand thick and not nearly as full and strong as it was—but there. My own heart seems in similar shape—returned from the dead and knitting together, though still far from what it was.

If the heart is healed, can the soul be far behind?

Our original topiary art was the only plant we lost during Jane's time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.
Our original topiary heart was the only plant we lost during Jane’s time in the hospital. About two weeks ago, the heart I started shortly after her death finished filling the form. It is only one strand thick in most places, but one strand is better than none.

Five years ago–surgery day

Death, Grief, Jane, NET cancer experiences, Uncategorized

Dark days of the soul

Jane was in surgery five years ago today as I write this. Part of me wishes she had had a less competent surgeon that day–someone who would not know how to deal with the damage to the heart he found when he opened her chest. It would have spared her the 25 days that followed.

…the price of all that is beyond counting…

I remember everything about that day in too vivid detail. I remember taking off her wedding ring. I remember the hours in the waiting room. I remember the walk up the street to the church where two friends were married–where Ted Kennedy sat when his son was in surgery–where the “liberal lion” of the Senate had had his funeral. It is all long and silent.

A single day

I remember coming back to the waiting room. I remember them sending me off to eat with a pager in my pocket. I remember coming back and watching the other people leave, until I was the only person left. I remember them closing the room and sending me to a waiting area of the sixth floor, right outside the ICU where Jane would arrive after the surgery.

It is all long and silent.

I remember trying to distract myself with television shows. I paced. I looked out the window at the street below and at the buildings across the street. And I remember thinking, this is taking too long–something is wrong.

Living and dying

And something was. The valves in the right side of Jane’s heart were so damaged that the serotonin had begun damaging the area where the new valves were supposed to attach. The surgeon had to sculpt a new seating for them into the flesh of Jane’s heart. A lesser surgeon would not have seen in his mind how to do that. A lesser surgeon would have been forced to let her die.

…something is wrong.

Sometimes I think about the what-ifs of that night. I wonder what would have happened if the surgeon had come to me and told me she was gone. I wonder if her death would have been harder or easier to bear. I wonder if I would be doing what I am doing now. I wonder how my relationship with her doctors would have been different–my relationship with our friends.

The day the world changed

I do know that there are people alive today who would not be if that had happened. They had heart surgery after Jane battled through four carcinoid crises–the last of which killed her. Her doctors learned from those and what they did to stop them. There is consolation in that–but it has not stopped the tears, especially not today.

…I think about the what-ifs…

I went to the wake for the father of some friends this afternoon. Jane and I had his grandchildren in class. They were the kinds of kids you don’t forget. Jane would be proud of them and the people they have become–as am I. She should have been there in more than spirit to see them.

Too much memory

A memorial service was held right after the wake. I’d planned to stay for it. But I could feel the tide rising. I had to get out of there before I lost it. Seeing our friends was one thing–seeing our students in that setting–was too much. Maybe on a different day than this one, it would have been different. But today…

There is consolation in that…

Today, I realized Jane really didn’t come out of that surgery. Her body worked–sort of. The heart pumped and the lungs pushed air in and out. The mouth formed words. But the anesthesia clouded her mind so badly she didn’t know what day it was until December 3. And the endless diarrhea stripped off her dignity more rapidly than her weight.

Forging tomorrow

Yet she stayed with me as much as she could for 25 days–and we forged something out of those days. I don’t know who I’d be without those last fragmentary days–or what I would be doing. I don’t know how many lives we touched in those days–nor how many since and in the future. I think I am a better person than I would have been without them.

Her body worked…

But the price of all that is beyond counting–and today it hurts more than I can say.

One reason I work on NET cancer issues is that I don't want anyone else to face a life alone without their other half.
Every day this month I try to do something to raise awareness about NETs. It is doubly difficult because the these days encompass the worst days in my life.