Saying goodbye to another piece of Jane

Uncategorized

Opening Jane’s suitcase

I said goodbye to another piece of Jane today. I went into the closet and took the suitcase she had packed for her hospital and rehab stays down from the shelf where it has lived since two days after I came home from the hospital without her. I took out the bag that held the clothes she had put on fresh the morning we went up for her heart surgery, as well. It resided next to the other bag.

Maybe it is just as well…

It will seem strange to many people who I have not unpacked those bags before now. If you’ve lost your husband or your wife, you will understand how hard it is to close any chapter of your last days with the one you love. There is a finality to it that is hard to describe. My fingers still have an unaccustomed tremor in them and my eyes threaten to spill salt water everywhere in sudden spurts.

Moving memories

And yet, the actual event was pretty straight-forward. I unzipped the bag, took out the clothes she had planned to wear but never did, and stacked them on a small table. I found no hidden final notes or other surprises. I went to the kitchen, got a large plastic bag, and moved the neatly refolded clothing into it. I walked down to the car and placed the bag in the trunk. Tomorrow, I will take them to a local thrift store.

I said goodbye to another piece of Jane today.

Then I turned to what she had worn that day. I bagged those up, too, but no one will ever wear them again. I can’t bear the thought of it, somehow. They will go out with tomorrow’s trash. They’ll be burned or buried. It sounds heartless, I know. But I can’t keep them here anymore than I can hand them off to someone else. And local law says I can’t burn them myself.

A small surprise

I write that, and it seems silly. Part of me wants to rescue them from the trash, wash them, and put them with the other items for the thrift store. And part of me says otherwise. There’s no good reason I have to decide that this instant. But it felt right when I decided that.

…no one will ever wear them again.

I cleared off the rest of the shelf while I was in the business. The closet was one of Jane’s. She kept her craft supplies there and, I discovered, hid her Christmas and birthday presents for me there. There were two pairs of shorts there she must have planned to give me for my birthday that spring. I suppose I should wrap them so I’ll have something to open that morning.

Other discoveries

There was an unfinished sweater she’d been knitting at some point there as well. There is no pattern in the bag, and I don’t knit, in any event. I’m not sure what to do with that. I set the other crafting items aside–a jewelry making set I’d given her for Christmas the year before she died; a set of colored drawing markers she’d used to draw pictures of cells and plants; some other odds and ends I know are crafting tools but have no idea what they are or what they do.

I suppose I should wrap them…

I also discovered the folder with her medical records from her last summer. She had not, I think, opened them. They looked unread. I unsealed the envelope they were in and read every word. I wish I had done so before she went into the hospital. There is much I might well have done differently–much we might well have done differently–had we known.

The extent of the problem

The blood clot in her arm that landed her in the hospital the same day we got the biopsy results was a bigger issue than I knew. She also had clots in her lungs and her neck. Treatment of those clots was complicated by the state of her liver, since the drug normally used was harder to regulate in patients with liver cancer.

I set the other crafting items aside…

The extent of her cancer was far greater than either of us knew. Not only were there tumors in her liver, but in her pelvis, and ileum. One of her kidneys was also deformed, though whether by the invasion of the cancer or by the swelling of the liver, the reports do not make clear. There may also have been tumors in her lungs and one of her adrenal glands–though the person reading the scans admitted they were not sure.

Hidden truths

Maybe she knew all of this and didn’t tell me. I know she told our neighbors who were headed to Florida in mid-October that she did not expect to see them again. I know she told other friends that she worried how I would cope with her gone. Sometimes I think she went out of her way to try to protect me from what was really going on.

The extent of her cancer was far greater…

And, of course, I was trying to keep her spirits up by being as positive as possible all the time despite my own understanding of her condition. My mind knew the odds were not good–but my heart could never let her see my concerns. Sometimes, a positive attitude is more important than all the drugs and surgery. Maybe we were both living a lie to protect the other from the reality we both knew was there. And maybe I actually read the reports and promptly suppressed them because I couldn’t deal with their reality.

Weighing what I might have done

But had I read the full reports on her scans, I might have let her go when the first coma hit. It would, perhaps, have been kinder for us both. But then I think about everything the researchers learned from her case in the weeks that followed–things that changed the way other patients were treated. And I think of the people we influenced simply by how we interacted with each other in those final days.

…I was trying to keep her spirits up…

Maybe it is just as well that I didn’t read any of what I read today before now. The smallest rock dropped in a pool has effects we cannot begin to see beforehand. Sometimes, ignorance is, perhaps, a good thing.

I said goodbye to another part of Jane today. I unpacked the suitcase she had taken to the hospital with her.
I said goodbye to another part of Jane today. I unpacked the suitcase she had taken to the hospital with her.

(Editor’s Note: I had vast plans for revising this website over the last six weeks. In mid-January, things went entirely sideways. I have not felt so lost since the weeks just after Jane’s death. I stopped writing, I stopped thinking, I stopped doing much beyond getting out of bed in the morning–and sometimes even that seemed very much in doubt. I think–though I am not sure–that I am finally, truly, in mourning. I’m feeling emotions again. I actually had a spontaneous–and unforced–laugh the other night that bubbled up out of my soul in a way I have not felt in a long time. It hurts like hell, but it is ever so much better than the terminal numbness I have endured for well over five years. It is nice to be able to have an uncontrolled cry that doesn’t feel like my sanity will vanish along with it on a permanent basis.

(I am told that really bad injuries don’t hurt. When the pain is so bad you think you are dying, it is a good thing because your body isn’t shutting down. The return of pain is also supposed to be a good thing. If that be the case, I am much better than I have been in a long time. I am nowhere close to healed–I may never be fully healed–but I think I’m a bit better than I was. I’m keeping my fingers crossed.)  

 

 

For Jane, Valentine’s Day, 2016

Poems, Valentine's Day

For Jane, Valentine’s Day, 2016

My heart is colder than the arctic wind
That drives the snow across your quiet grave
And etches deeper scars across my soul.
My heart remains more empty than the corpse
That lies beneath the granite stone that marks
And mars my waking and my sleeping dreams.
My soul aches blood and screams your single name.
The wind tears words and screams apart like dust
And scatters thought like stars across a winter sky.
This winter cold endures. No fire will take
Nor light emerge to fill the empty space
Your end has set about my noisome life.
And yet my love grows stronger—reaches note
And song and dances patterns darkness scans
For meaning. We are light unquenched by death.
All my love, always and all ways,
—Hubby
Editor’s Note: Each year, I wrote Jane poems for our anniversary and Valentine’s Day. It is a tradition I have continued since her death. Yesterday, I read this poem at her grave and left a copy of it there. Normally, I would have left flowers there as well–but with the weather as it is, that seemed a pointless exercise. Instead, I took a heart wreath made of vines and set it in front of the headstone. It has also become my tradition since her death to post the poems I write for her here.

NET cancer winter fundraising letter 2016

Boston Marathon Jimmy Fund Walk, Fundraising, Grief, NETwalkers Alliance

(Editor’s note: As I do every year, I am making the following letter available to everyone raising money for NET cancer research, whether for our NETwalkers Alliance Boston Marathon Jimmy Fund Walk team or for a regional event in your area to support some other NET cancer research group. In the latter case, you have my permission to make changes in it to get it to work for your purposes. You can also use it as a model for creating your own fundraising letter. I don’t ultimately care who finds an answer to NET cancer–so long as someone does and it happens sooner rather than later. And, of course, if you’d like to make a donation to my Walk, I won’t object to that either.)

The Letter

Dear friends,

You’d think over five years after Jane’s death I’d have come to terms with that event. Friday night, I bawled my eyes out for close to three hours before I crawled into bed. Saturday morning, I started screaming, “I want my life back” at the top of my lungs. It didn’t change anything, but I felt better afterward.

I like to think I can have my life back anytime I want it: I just have to turn my back on NET cancer, turn my back on all the patients and caregivers I’ve met—and all the doctors and researchers working to find a cure for the cancer that killed my wife. People tell me it is my work against this cancer that holds me back from getting over Jane’s death—that my insistence on being in daily contact with it and those who have it is what prolongs my grief. They may even be right.

I just have to turn my back on NET cancer…

But I can’t un-see the truth of Jane’s 30 years of struggle with sleepless nights and constant diarrhea, nor un-see her final days in that hospital room. I know what every patient suffers. I know intimately what their families will go through–and are going through.

Yes, we’ve made substantial progress in the last five years. We have new imaging systems that make the disease easier to see. We have new drugs and treatments that ease the symptoms and prolong patients’ lives. And we are doing the basic research that will help us understand how this cancer works and how we can attack it. But we still don’t have a cure.

I know what every patient suffers.

So, again this year, I will walk the length of the Boston Marathon route on September 25. Over the last five years, you’ve helped me raise nearly $70,000 that way—every nickel of which funds NET cancer research at the Dana-Farber Cancer Institute. The teams I’ve captained have raised over $180,000 for that purpose—and you’ve played an important role in inspiring that.

I am asking for your help again this year. We have a donor who will match every donation you make by June 30, dollar-for-dollar, up to $7500. And if we get that entire amount, I won’t ask you for another penny until this time next year. If we don’t, I’ll have to write again this summer.

Every dollar makes a difference. Please donate today.

Pax et lux
Harry Proudfoot

P.S. If you’d like to join us September 25, whether for 5K, 10K, 13.1 miles, 26.2 miles–or as a Virtual Walker–you can sign up by clicking here. We want to recruit 115 Walkers this year–one for ever 1000 patients who are living with the disease in the US–and one dollar for every one of those patients. Help us #cureNETcancernow.

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let's ride this horse to support the research we need to have to find a cure.
Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.

Building more research from $15 million seed

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, Goals, NETwalkers Alliance

An influx of cash

Fifteen million dollars sounds like a lot of money. And yesterday’s announcement by the NET Research Foundation of a grant in that amount, spread over three years, from the Margie and Robert E. Petersen Foundation, is huge news. It represents the largest single donation for NET cancer research in history. In combination with the federal SPORE Grant announced for the University of Iowa, those two pieces of new funding nearly equals the amount of money raised and spent on NET cancer research last year from both federal and private sources. Assuming nothing changed in terms of private giving and NCI funding, NET researchers would see $15-16 million to work with next year.

We must, as a community, rise to this new challenge.

But we can’t count on that being the case–especially given that National Cancer Institute support for NET research is actually dropping. The danger here is that we all look at that big chunk of change and don’t push as hard. Instead, we need to seize this event and make it the starting point for our own ice-bucket challenge moment. We need to do more than strive to match last year’s numbers of $8-10 million. We need to try to double that amount above and beyond this sudden influx of new money.

Transformational moment

Ron Hollander, the director of the NET Research Foundation, called the Petersen Foundation Grant “transformational” and I called it a “game changer.” And it is both those things. But to take advantage of that grant’s full potential, we all need to make an increased commitment to do whatever we can to help.

…we need to seize this moment…

I say that with the full understanding that many patients and their families are facing difficult financial times. There is nothing cheap about the treatments we have for NET cancer. Too many people face enormous monthly co-pays that leave them choosing between food on the table for their families or the medications that make life bearable. Some are losing their houses as a result of having to make those kinds of choices.

The restraining issue

But those of us in better financial shape do need to do what we can–both for our brothers and sisters in need and to support the ongoing research that we can hope will lead to a cure. Neither one of those things is an easy task–and I have no good answer to the issues the cost of treatment raises.

Too many people face enormous monthly co-pays…

What answers I do have to those issues require political lobbying work that Walking with Jane’s non-profit status prevents me from raising here in any detail. But it is abundantly clear that we cannot rely on charities or churches to solve that problem. If we could, I would not read the daily litany of those whose finances this disease, among so many others, has ruined.

The research campaign side

On the research funding side, there are things Walking with Jane and other regional, national and global NET cancer groups can do. I can’t tell any other group what to do with its efforts in this regard. But I can set a clear path for Walking with Jane and for the NETwalkers Alliance Jimmy Fund Walk team I serve as captain for.

Neither one of those things is an easy task…

Over the last few weeks I have thought about the goals for the Walk team. I initially set goals of 100 walkers and $100,000 for the NETwalkers Alliance back at the beginning of January. I picked those numbers because they were nice round numbers. I knew they would be a significant challenge to reach: last year we had but 33 walkers and raised nearly $68,000.

New numbers for new times

But numbers should always have some symbolism to them–and those numbers lack any symbolic quality beyond being even. Estimates of the number of diagnosed NET cancer patients in the US range between 111,000 and 120,000–and the more I think about it, the more I think our team goals need to reflect those patients.

…I can set a clear path…

So, today, after asking key members of our team for their opinions, I am resetting our goals to 115 walkers and $115,000. Those numbers are based on the midpoint of the best estimates available for the number of diagnosed patients. Each walker will represent about 1000 patients–and we will raise $1 in honor of each of those patients.

Accepting the challenge

Reaching those goals will not be easy. But President Obama challenged the nation in his State of the Union Address to undertake a “moonshot” to cure cancer. President Kennedy, in launching the original “moonshot, said, “We choose to go to the Moon in this decade and do the other things, not because they are easy, but because they are hard; because that goal will serve to organize and measure the best of our energies and skills, because that challenge is one that we are willing to accept, one we are unwilling to postpone, and one we intend to win…”

…numbers should always have some symbolism…

That is very much a sentiment with which I agreed then–and with which I equally agree now. We must accept this challenge, in our time, in our place; we must be unwilling to postpone our efforts; and we must really intend to win. People’s lives depend on our efforts–and we must not let them down.

Other efforts to support research

I’ll also be working to boost the numbers of riders–and the funds raised–by the NET Research Foundation’s Pan Mass Challenge team once it is organized. I may even jump on a bike myself, if I can do so in a way that adds to that event without detracting from our Walk efforts. Those funds go to NET cancer research at Dana-Farber as well.

Beyond that, we need to find a way to get local, regional and national celebrities more involved with our efforts. Each year, for example, I ask local and regional politicians to join us for the Walk. They generally politely turn me down, but I’ll keep asking. At the suggestion of two patients, we’ll try again to get the attention of local sports franchises and the leagues they belong to. An earlier effort in that direction didn’t ultimately go anywhere, but the squeaky wheel is more likely to be heard than the silent one

Making the real effort

But our Marathon Walk must be only one part of the effort. It is just one part of 3-in-3: The Campaign to Cure NET Cancer Dana-Farber launched in December. And that campaign must be just one part of a larger effort, organized in region after region in support of local NET cancer centers and the research they are doing. And all those efforts must be only part of a national effort spearheaded by organizations like the NET Research Foundation and the Carcinoid Cancer Foundation. And finally, that national effort must only be part of a global effort in nation after nation and continent after continent.

We must accept this challenge…

But this must be a sustained effort over as long a period as it takes. We have spent billions of dollars on breast cancer research. We still have no reliable cure for many forms of that disease. What we have learned in recent months about NET cancer seems to indicate that it is perhaps even more complicated than breast cancer. Finding an answer to this riddle will not be easy–and it is unlikely to be cheap.

The end of the beginning

The Petersen Foundation grant has the potential to change NET cancer research in significant ways. But if that potential is to be fully reached we must view it as the beginning of a change in our fortunes–and not as an ending. We must now seize the opportunity that grant creates and exploit it–not only in the laboratory, but in the public arena as well.

…this must be a sustained effort…

We must, as a community, rise to this new challenge. We must do so not only with our money, but with our muscles, our sweat, our minds, and our bodies. Let’s make this year the breakthrough moment we need–and then build on that breakthrough to create the full resources we need to cure this disease.

Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let's ride this horse to support the research we need to have to find a cure.
Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.

A small crack in the mind

Uncategorized

The tides of winter

I don’t know what it is about late January and early February and the deaths of people I care about. In 2010, I lost my mother. In 2011 I was just beginning to emerge from the numbness that enabled me to endure Jane’s death–and lost a former student I’d coached to a heart attack. In 2012, I lost a former student who was like a daughter to me. In 2013, I lost one of my closest high school friends. Three days ago, I learned another high school classmate had died.

This isn’t over until we all say it is.

Death has swirled around my mind endlessly the last five years. I’ve lost my wife, my mother, my father, my father-in-law, and more people than I can count. I’ve attended more wakes and funerals in the last five years than in all the years before combined. I have young friends who talk about how all the people they know are getting married and having babies. Too many of the people I know have died. And I hate funerals.

Mind breaking point

None of that includes the many people I have met working on NET cancer who have died in those years. Their names stick in my mind–but I have no idea how many it is. I don’t like to think in those terms. I worry when I don’t see a post from someone for more than a couple of weeks. Sometimes it just means they’ve gotten busy with something else. Sometimes they’ve gone into the hospital for an embolization or other procedure that leaves them too tired to do more than recover. Sometimes the next thing I hear is from a closer friend that they have died.

Death has swirled around me endlessly…

In mid-January this year, my mind cracked. It didn’t matter that there were things I needed to write, events I needed to plan for, forms I needed to fill out. It didn’t matter that work on the 3-in-3 campaign was hanging in mid-air or that our Marathon Walk team needed me to be focussed on it–or that this website needed some daily attention. I curled up in a ball on the couch and read about World War II, did crossword puzzles, and tried not to think about death or politics or the Zika Virus or my training schedule or, most especially, NET cancer.

Recovery

I’m still a little shaky. The crossword and the comics in my daily newspaper call to my mind like Sirens.  The seemingly daily anniversaries of the deaths of people I cared about threaten to entrap me in a shroud the way a spider wraps up a captured moth. But I’ve begun to move again–and I know things will get better.

…my mind cracked.

In fact, I can see them getting better every day–especially on the NET cancer front. The new issue of Hematology/Oncology Clinics is devoted entirely to NET cancer–and was edited by Matt Kulke and Jennifer Chan. The AdVince Virus developed at Uppsala University has–at last–been approved for a Phase I/IIa  trial in Sweden. A similar level trial of immunotherapy sponsored by the NET Research Foundation gets underway later this year as well. And those two trials are of agents that might finally offer something better than managing the symptoms and slowing tumor growth.

Getting there

I’m in the process of drafting fundraising letters, struggling with a series of slides for potential donors, and sitting on some other news I want to shout from the rooftop–but can’t even whisper about until the official word comes down. Soon, I’ll start reading through the papers in Hematology/Oncology Clinics and trying to put what’s there into a form a general audience will understand and piecing together some events to help fund the future of NET cancer research.

I’m still a little shaky.

I feel badly about vanishing the second half of last month. But I also know there are times my mind will insist I take a break whether I want to or not. It is the nature of both grief and this work–at least where I am concerned.

But I’m still here. This isn’t over until we all say it is.

Sometimes, even the strongest mind loses its way.
Sometimes, even the strongest mind loses its way.

Five years: The big picture–Part 7

awareness, Fundraising, Goals, Marketing NETs

Every picture tells a story

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

Lives are at stake…

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

Parts of the picture are blurry

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

We have glimmerings of a better understanding…

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

Picture the future

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

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

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

Leading by example

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

Every cancer has weaknesses.

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

Patients paint their own picture

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

…I let my ego get in the way…

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

Regional picture

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

…patients seem to agree…

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

Local picture

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

We didn’t plan it that way.

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

Imperfect picture

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

 We created a zebra herd…

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

Personal Picture

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

I’ve told Jane’s story…

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

Another view

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

I made a vow…

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

Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand--and a long area of track to house 1200 zebras. But it created a picture of the disease and how many it affects.
Setting up the Zebra Herd at Relay for Life was a time-consuming task even after the bags were made up. It takes a lot of sand–and a long area of track to house 1200 zebras. But it created a picture of the disease and how many it affects.

 

Five years: Building resources–Part 6

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Hammering the awareness nail

NET  cancer patients across the world have worked for years to grow awareness of the disease among both doctors and the general population. I was reminded of that by a thank you letter I received this morning for a donation I personally made to the Carcinoid Cancer Foundation last month. They’ve been hammering away at that message for nearly 50 years.

This cannot be about redividing the pie…

I’ve been hammering at it for just five–and I’m about as frustrated by it as anyone can imagine. There has been progress–but not enough. The problem is worse than the popular slogan among patients and foundations: “If you don’t suspect it, you can’t detect it.” The truth is, you can’t suspect something you’ve never heard of–and for too many practicing physicians, that ignorance remains a big piece of the problem.

Awareness limits and builds resources

But lack of awareness, which I tried to address in my last post, doesn’t just have an impact on diagnosing the disease; it also has an effect on our ability to put the pieces together to find a cure. Scientists can’t study something they don’t know exists; people won’t donate money to a cause they have no knowledge of. And even if researchers know about a problem, they can’t do much if there is no money available to fund the research.

…ignorance remains a big piece of the problem.

I can’t speak for other patients and caregivers, but part of me would rather not have known what was really wrong with Jane, given we had no cure for what ailed her. Had she simply died following surgery after a diagnosis of idiopathic right-side heart valve disease, it might have made both our lives much more simple. There is nothing emotionally good that happens when you are told there is no cure for your disease, at least that’s how part of me feels about it.

Limited resources, limited ability

And five years after Jane’s death that is–in most cases–still the reality. We have more ways to slow the progression of the disease, we have more ways to ease its symptoms, but a cure remains elusive. And that, in part, has to do with lack of resources. Because we don’t have the money to pursue multiple avenues at once, we have to choose from among a number of good ideas which one to back–and if we choose the wrong one, there really is no evolving Plan B.

…part of me would rather not have known…

For example, in the summer of 2011, I made a trip to Dana-Farber to tour the lab where they were doing research on NET cancer. They had set up a slide with a NET cancer tumor they had managed to grow in the lab. As I looked at it through the microscope they told me about the tiny cells connected to the main body of the tumor. They explained these were feeder cells–so-called because if you didn’t leave them attached to the newly harvested tumors, the tumors would not grow in the lab.

What we do without

Had we had money to fund the research at the time, we might have explored more quickly what was going on with those feeder cells–more properly called stromal cells. But the pittance we had for pure science was already committed to DNA research on the main body of the tumor. Looking at those cells had to wait.

…a cure remains elusive.

It shouldn’t have had to–any more than any of a dozen other ideas shouldn’t have had to. But when you have not merely limited, but practically no resources to work with, you have to make choices about where your money goes. Like a poor family, you look for where you think you can get the most bang for your buck based on the limited money and knowledge you have. Sometimes, you get lucky; many times you don’t.

The price of limited resources

But for NET cancer researchers, that is the reality. It is a reality that likely has cost more than a few lives–and will continue to cost lives if we don’t find ways to change it–and change it significantly.

Looking at those cells had to wait.

Walking with Jane has not been hugely successful in raising large sums of money. Over the last five years, through teams we’ve organized and donations I’ve personally made, we’ve generated nearly $350,000–most of which went to NET cancer research. (We also sponsor scholarships at the high school where Jane and I worked and at her alma mater, and have a successful Relay for Life team whose money goes to support American Cancer Society programs.)

Every dollar counts

That seems like a goodly sum–and given our size and resources, it is–but compared with what it costs to fund even a small Phase I trial, it isn’t very much. And given the most conservative estimate of what it will cost to find a cure–about $100 million–it isn’t much money at all.

…that is the reality.

But, as I say to potential donors everywhere, given how little we actually spend on NET cancer a year, every dollar counts. For example, I am told my initial commitment to Dana-Farber meant we went from one full-time NET cancer doctor in the clinic to two. My annual commitment was quite small, comparatively.

Eventually, you’re talking real money

Our local fundraisers are tiny. The biggest local event Walking with Jane held last year only raised about $3200. But we did ten of them. And those events inspired people around New England to hold events of their own–leading to $67,800 being raised by the NETwalkers Alliance team for NET cancer research at DFCI through the Jimmy Fund Walk.

…every dollar counts.

In 2016, Walking with Jane will add two more events to its local list and focus nearly our full effort on NET cancer research. That means we will cut back on our commitment to the Relay for Life so that we can devote more time to what really is our reason for being: Finding a cure for NET cancer–and doing it sooner rather than later.

Offering knowledge

We will also offer our fundraising expertise to other members NETwalkers Alliance as well as other teams committed to NET cancer so that we continue to grow the pool of money available for research. And if someone asks us for help outside the New England area, we’ll do that, too. We see a lot of what we have done as piloting ideas we hope others will want to adopt.

Our local fundraisers are tiny.

For now, the majority of our direct fundraising efforts will be directed at DFCI. However, we want to help other cancer centers with NET cancer programs develop more and better local fundraising programs of their own. We can best do that by sharing knowledge of things we have done while continuing to grow our own local capabilities.

Helping NET cancer centers grow

We don’t want to take away from what organizations with national and international reach are doing. Rather, we want to supplement their efforts by helping more regional organizations become better at supporting local NET cancer centers that are really hurting financially. We need to grow those centers so that they do not see reductions in their budgets. One way to do that is to create robust, local groups that can create greater local support–both financially and vocally.

…we continue to grow the pool of money available…

We want our work with 3-in-3: The Campaign to Cure NET Cancer not only to build resources for NET cancer research at DFCI, but also serve as a national–and international–model other NET cancer centers and their supporters can use to further increase funding, awareness and support for NET cancer researchers, patients, and caregivers. If we can inspire even five similar efforts at other cancer centers, that could lead to a substantial increase in NET cancer spending in the US and elsewhere.

Growing the resources pie

But we need to do that by attracting new money. We don’t want to see declines in support for NET cancer research elsewhere as support for these programs increases. Nor do we want to see declines in spending for other cancers. This cannot be about redividing the pie that is already too small–it needs to be about growing the size of the pie. To do that, we need to work together.

If we can inspire even five similar efforts…

A year ago, I made a series of proposals for marketing NET cancer. In the final post in this series, I’ll revisit those ideas and look at where they fit into the next year–and the next five years.

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. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
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: The Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.

 

NET cancer research needs you

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, Marketing NETs, NETwalkers Alliance

(Editor’s note: What follows is the letter I wrote this week inviting people to join the NETwalkers Alliance in the Boston Marathon Jimmy Fund Walk on September 25. All the money our team raises goes to NET cancer research. I post it here for two reasons: The first is in the hope that those of you in the Northeast will join us for the walk; the second is to provide a template for groups elsewhere to use in their own fundraising events. You are free to use this letter either as is or in modified form either for the Jimmy Fund Walk or a similar event in your area.) 

NET cancer team letter

Dear friends,

I’ll be in Hopkinton for the start of my sixth Jimmy Fund Marathon Walk in 283 days. I’ll walk, as I always have, in memory of my wife Jane, who died of NET cancer December 10, 2010. And I’ll walk to support NET cancer research at Dana-Farber in the hope that my many friends with NET cancer will benefit from their work.

I’m writing you today to ask you to walk all or part of that route with me September 25 as part of our NETwalkers Alliance team. I’ve punched in some significant goals for this year as we work to support 3-in-3: The Campaign to Cure NET Cancer, which we launched December 9. That campaign aims to raise $3 million in three years for NET cancer research at DFCI—and every NETwalkers Alliance dollar will go to help meet that ambitious goal.

If you’ve followed my posts on walkingwithjane.org this fall, you know just how deeply the loss of Jane affects me emotionally even today. And you know, as well, how determined I am to prevent others from going through what she suffered–and what I deal with now.

I’m already in. I hope you’ll join me.

Many of you have lost people you love to this disease—and none of you needs me to remind you of how that feels. You know intimately the things I try to put into words–and fail to do adequately.

Many of you have loved ones who are fighting this disease right now. You know the daily trials they face too well.

And many of you have this disease. You deal every day with the sometimes debilitating and embarrassing symptoms of NET cancer.

…take concrete steps to change the reality…

Each of us has a reason to do what we can to kill NET cancer. The Walk is one of the ways we can take concrete steps to change the reality for our loved ones and ourselves.

We’re looking to recruit 100 walkers for our team this year and raise $100,000. With your help, we can make that happen. More importantly, we can help change the future for NET cancer patients and their families.

I’m already in. I hope you’ll join me. Register today. If you enter the code word NEWYEAR before January 31, you’ll get a $10 registration discount.

Pax et lux,
Harry

p.s. If you were a Pacesetter last year, they tell me you’ve been sent a separate discount code word you can use.

p.p.s. Please feel free to share this note with others who may be interested in joining us. We need all the help we can get to help spread the word about NET cancer.

Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough--and it never alleviates entirely either emotion for very long.
Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough.

Five years: WWJ awareness goals and plans

awareness, Boston Marathon Jimmy Fund Walk, Goals, Marketing NETs

Planning matters

It’s hard to set realistic goals or make good plans when you know, as I did five years ago, virtually nothing about the situation you find yourself in. But as anyone who knows me can tell you, I believe in nothing more strongly than setting goals and evolving plans to reach those goals. That no plan survives first contact with reality does not mean planning is worthless. The person who plans is far more likely to succeed in any given situation than someone who doesn’t.

…raising awareness will be the most difficult part…

Two quotes on this subject have guided my life in many ways. The first is, “Those who fail to plan, plan to fail.” You can, if you get lucky, succeed without a plan if your opponent is equally without a clear plan. But if that opponent plans at all–or has come to the field with overwhelming force–you have almost no chance of victory. Cancer, in general, is an overwhelming force–and NET cancer especially so.

Planning in the blood

The second is, “Poor prior planning produces pitifully poor performance.” Poor plans based on poor information are more likely to end successfully than no plan at all, but not by very much. An untrained army will not defeat one that is properly prepared for battle. Ask the French about Agincourt if you have doubts. They had overwhelming force against a small group of highly trained archers and a handful of dismounted knights. Many an English yeoman left that battlefield a wealthy man.

Cancer, in general, is an overwhelming force…

That is how I was brought up as a child and trained as a young adult. It was how I ran my classroom–and how Jane and I fought her cancer. Having a plan does not always mean you win–it just makes it more likely.

Plans start with goals

Our goal is simple: eliminate NET cancer as a fatal disease; create ways to cure it when it happens; and work to prevent it if we can. The third goal is the least pressing of the three, not because it is not important but because we do not know enough about the causes of the disease to take any meaningful action in that direction.

Having a plan does not always mean you win…

Finding a cure–even just finding ways to ease the symptoms–is not something I have the background to bring about directly. Most of those reading this are not doctors or researchers. That does not mean, however, that there are not concrete things we can do to bring about those things.

Lack of awareness

The biggest problem we face is the same one that existed five years ago: lack of awareness of the disease. Currently, the only hope for a cure a NET cancer patient has is early detection–early enough that surgery can deal with a single tiny tumor before it spreads. Right now, most discoveries at that stage are accidental. There is no equivalent of a breast self-exam or a broad spectrum blood test like PSA for prostate cancer.

Our goal is simple… 

Too often, there are no symptoms of any kind until after the cancer has spread well beyond the original tumor. By that time, surgery can at best debulk some tumors and reduce symptoms somewhat. And sometimes surgery is useless.

Impact of awareness

But whether because of increased awareness, better training, improved imaging techniques or some other factor, we are seeing 50 percent more diagnoses in the US than we were five years ago. At about 15,000 diagnoses a year, NET cancer still pales next to breast cancer, lung cancer, prostate cancer, colon cancer or any of a number of other forms of the disease. But the truth remains we have no idea how many people die of NET cancer each year who are never properly diagnosed with the disease.

…sometimes surgery is useless.

Lack of awareness also has an impact on our ability to increase resources for research at every level from basic science to developing treatments. Scientists simply do not enter fields of research they have never heard of. Nor do people make donations to diseases they have never heard of, let alone experienced.

Website awareness

Raising awareness, then, remains one of the crucial things we met continue to work on over the next five years. In Walking with Jane’s case, that means continuing to work on this website so that it increasingly becomes what my original vision for it was: a valuable resource written in plain English where people can come to learn about NET cancer and the various places available where they can get additional information.

NET cancer still pales next to breast cancer…

While I have done a good job on some sections of this site, others need to be updated and expanded. This blog accounts for the vast majority of visits to walkingwithjane.org. But the Resources page is sadly out of date and the Calendar doesn’t get as much attention from me as it needs. Part of the reason for that is the things I do in other areas; there really are only so many minutes in the day. Essentially, that means I need to recruit some help to take on part of what I am doing here and/or elsewhere.

Social media awareness

Last year, walkingwithjane.org attracted 24,444 hits from people in 101 different countries. That sounds like a lot–and it is. But it is small change even in the NET cancer world. For example, the Carcinoid Cancer Foundation website garners 45,000 hits a month. My goal for next year is 36,000–about 3000 visits a month. that means continuing to build audience for these posts, but also redeveloping the other pages on the site.

…I need to recruit some help…

While this and other websites are a major piece of the awareness puzzle, it cannot be the only piece. We need to continue to develop social media. I started an experiment last week with the help of Jillian Emmons, a member of our Jimmy Fund Walk team, to increase the reach of the Walking with Jane Facebook Page. We will try to expand our use of Twitter, Pinterest, and Instagram in the coming year, as well, hoping that those efforts will increase general awareness of the disease among Internet users.

Other avenues

Last winter I produced a pilot for a weekly audio podcast about NET cancer. It did not generate much of an audience, but that may have been because things came up that pulled me away from promoting it very well. It is an idea I’d like to come back to if I can figure out how to streamline the production process and improve promotion.

We need to continue to develop social media.

But both social media and the Internet require an active and connected audience–and not everyone is. Walking with Jane now has two NET cancer pamphlets in production that we need to work to get into doctors’ offices across the country so that we can educate both doctors and patients about the existence of the disease.

Getting the word out

We need to do more with visual media. I’ve produced a number of short PSAs, but we need to create more of them and keep pressing to get them aired beyond the Walking with Jane Channel on YouTube. My hope is to produce one 15-30 second PSA each month aimed at wetting people’s’ appetites for more information about NET cancer–or at least get them familiar with the name of the disease.

It is an idea I’d like to come back to…

Another thing we need to do is get more people to tell their NET cancer stories, whether in writing or on video. That is a task I need to spend some more time thinking about. We tried several different approaches to this over the last five years–but most of what has happened I had very little to do with. Most were cases of accidental offense where a reporter somewhere heard about someone with the disease completely by accident and decided it would make a good story. We need, all of us, to work more intentionally to get those stories out to a broader audience.

Awareness is key

Last year, I was invited to speak to a couple of different civic groups about NET cancer. Here, too, we need to be more active in seeking out opportunities to do those kinds of things. To that end, one of the things I will do in February is send out letters locally, regionally, and nationally to civic and social groups offering to talk about NET cancer at meetings at all levels of their organizations. I’ve also encouraged people at Dana-Farber to speak to more lay audiences when the opportunity presents itself.

We need to do more with visual media.

In some respects, raising awareness will be the most difficult part of what lies in front of us. But it is also the key to both early diagnosis and to creating the resources we will need if we are to find a cure. We’ll need not only to pursue the things outlined above, but continue all the things we have done that have proven successful in the last five years.

In the next part of this series, we’ll consider plans for creating the resources necessary to eventually kill NET cancer.

Our growing Jimmy Fund Marathon Walk team is another way we build awareness of NET cancer. Each year I design a new shirt for our team to use both on the day of the walk and throughout the year.
Our growing Jimmy Fund Marathon Walk team is another way we build awareness of NET cancer. Each year I design a new shirt for our team to use both on the day of the walk and throughout the year.

Five years: Building resources for NET–Part 3

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

Resources 2010

The day before Jane died–when we already knew there was nothing left to do but let her go–Jennifer Chan, Jane’s oncologist, and I had a conversation about Jane’s legacy as a patient. Jen told me that afternoon that what they had learned from her over the four months from Jane’s diagnosis to her death had doubled our knowledge of the disease. Two or three of the things the came out of that knowledge have made a substantial difference in the lives of other patients since.

…curing NET cancer now will become a reality.

But what stunned me that afternoon was I knew pretty much what we had learned–and it wasn’t very much. That statement demonstrated just how little we knew in 2010–and it didn’t take me very long to figure out why we knew so little about a form of cancer first diagnosed nearly 100 years before. Not many people had spent any serious time studying what we then called carcinoid cancer–and their efforts had been hampered by the tiny amount of money available to study the disease.

The search for resources

In 2010, we spent less than $2 million on NET cancer research. The Dana-Farber Cancer Institute had one doctor working full-time on it. Jen was working on it only half the time. The rest of her day was spent on other gastrointestinal cancers. There wasn’t money to do much more than that.

…Jane’s legacy as a patient.

And that problem existed virtually everywhere else in the US. There were pockets that were doing more, but they were few and far between. $2 million just doesn’t buy many researchers or much lab space or much equipment. People were dying as a result–but they were dying quietly and no one was paying much attention.

Increasing resources then

Jane, too, died quietly–but I was determined to make some noise about it, if I could just figure out how to do it. And a chunk of that noise was aimed at creating the resources we needed to make a difference in the lives of NET cancer patients. Raising awareness was one step in that process–but setting an example on the financial side needed to be part of the equation.

People were dying as a result…

So in June of 2011 I signed up to do the Jimmy Fund Marathon Walk. In July, someone I met at the Caring for Carcinoid Foundation (now the NET Research Foundation) told me about their team and that because they raised over $10,000 they could earmark that money specifically for NET cancer. I joined that team immediately.

Building resources

I had no idea what I was doing. I’d never tried to raise money before I’d started doing fundraisers for our Relay for Life teams that spring. We’d managed to raise barely $2500 in the six months between Jane’s death and those events–and it had been exhausting. Now I was going to try to raise money on my own for an event that would take place a good way from where my fundraising base was.

…I was determined to make some noise…

So I set my goal for the minimum–$300 seemed like an awful lot of money to me then–and posted that I was walking the Marathon in September on my brand new Facebook page. In less than an hour, I’d garnered $500 in donations. I reset my goal to $1000, then $1500, then $2000.

The long Walk to resources

Things eventually slowed down, but when the dust had settled, I’d raised about $4500 in less than three months. I raised $10,000 in 2012, $13,000 in 2013, over $15,000 in 2014, and broke $30,000 in 2015. I had lots of help last year as our Relay team turned its full attention to NET cancer after the Relay in June.

I had no idea what I was doing.

In 2012, I took over as captain of the Caring for Carcinoid Team, changing its name to include Walking with Jane–yes, I have an ego. The size of the team shrank–as did what the team raised. In 2013, we were even smaller when three of our team members–and our best recruiter–lost their father to NETs in June. But we raised more money. In 2014, we added another team to ours and grew our own team beyond that. That group raised over $66,000, And while we had a smaller team in 2015, we narrowly beat that number.

Committing personal resources

But in the fall of 2011, I had quietly made another decision. I discovered that Jane’s small pension was coming to me–and it didn’t seem right for me to keep that money for myself. Certainly, I know I will likely need that money someday and that I should be salting it away in the meantime. But it seemed a better investment to put that money where it could do more immediate good.

The size of the team shrank…

So I pledged $100,000 over five years to set up the Walking with Jane Fund for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Last month, I renewed that pledge for another five years. It isn’t a lot of money compared with the major donations of folks like the Yawkeys and people who get their names carved on the walls–but that isn’t the point. I look at that donation as seed money that I hope will get others to do what they can–whether less or more than that donation. Every dollar counts.

Creating the resources we need

Because the fact remains that we still don’t have the resources to really go after NET cancer the way we can go after lung cancer or breast cancer or prostate cancer or colon cancer. Last year, with luck, the total raised and spent in the US on NET cancer will be $8-10 million–a great improvement over where we were in 2010, but still far from what it will take to find a cure. We’ll have more doctors, researchers and lab space dedicated to NET cancer than we ever have before, but still far from what it will take to find a cure.

…it seemed a better investment…

Last month, Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors launched 3-in-3: The Campaign to Cure NET Cancer. The plan is to raise $3 million in three years for NET cancer research at DFCI. I gave the welcoming speech and closed the meeting with a call to create the resources to cure this foul fiend of a disease. (All the money raised by both our Walk team and the Walking with Jane Fund will count toward this campaign.)

Building on our resources

As of this afternoon, we have raised $425,000 in less than a month for 3-in-3. But we need to keep that momentum going. More, we need to extend this idea to other NCI cancer centers with NET cancer programs and other NET cancer foundations so that over the next three years we raise nationally $45-60 million so that we can fully exploit all the new knowledge about NET cancer researchers are generating.

I gave the welcoming speech…

In 2011, Walking with Jane raised about $7000 for cancer research–including what we raised for Relay for Life. My goal, at the end of that year, was to double that amount in 2012, double that again in 2013, 2014 and 2015. By that measure, we should have raised $102,000 this year. That amount did not pass through our bank account this year.

The doubling cube of resources

But when I add up what our Relay team raised and what our Jimmy Fund Walk team raised, and what I personally donated to DFCI and the other major NET cancer foundations, we came very close to that mark.

…we should have raised $102,000 this year.

My goal in doing that was to encourage similar increases in resources in other groups over that same time period. I doubt Walking with Jane had much to do with the fact NET cancer organizations raise four times what we did in 2010 today. Walking with Jane simply does not have that kind of reach or influence. Many of us arrived at the same goal, seemingly independently, and took steps to make that happen. And we seem to have done so entirely with new resources–so we are not taking money from other cancers to cure our own.

Critical mass

And the events of December 9 at Dana-Farber convince me we are nearing the critical mass to make #cureNETcancernow more than a simple hashtag for a fundraising campaign; we are nearing the point that curing NET cancer now can become a reality.

…we came very close to that mark.

You can help make it so.

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. He ended with a call to increase NET cancer resources.
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. He ended with a call to increase NET cancer resources.

Editor’s note: This is the third in a series of pieces about where we have journeyed over the last five years–and plan to go over the next five. The next part in the series will look at goals for the next five years–and plans for how to reach those goals.