Dream under construction

I dreamed of Jane last night. We were walking through a construction site. Old buildings were being torn down. New buildings were going up. We got separated at one point and I remember looking for her–trying to find her–and knowing that I would. And then, there she was.

At least thirty-three people still die from NET cancer every day…

This was the second time in a week I dreamed of Jane. The first time was a perfect metaphor for the idea of universal unconditional love. This time it was an apt metaphor for the state of NET cancer research. The old status of the disease as so rare no drug company could be counted on to fund anything is being replaced by increased interest on many different fronts.

A dream becoming real

In the 37 months since Jane’s diagnosis–in the nearly 34 months since her death–much has changed. We still are years from a cure–years from being able to do anything more than slow the disease down a half a step. NET cancer is still a penniless orphan compared to the better-known and better-financed forms of cancer.

 …NET cancer is still a starving orphan at the cancer funding table.

But the amount of money being spent on research into NET cancer has more than doubled since Jane’s death. The FDA has approved two new drugs for the treatment of pancreatic NET  cancer. There are more than 75 new treatments in the pipeline that offer varying degrees of hope–ranging from new drugs to alleviate the symptoms to a range of treatments that may offer hope of a cure.

Dream detection, Dream cure

We now have two viruses–one already in trials and one preparing for its first trial–that essentially eat NET cancer tumors the way a child in a growth spurt goes through whatever food he or she can find. We have a better understanding of when to do surgery and how to handle the stages before and after surgery. We have non-surgical methods of treating tumors in the liver that can all but eradicate those tumors–and sometimes take them out completely.

We’ve begun DNA studies of people with NET cancer…

Detecting the disease remains critical–but difficult. Even here, however, we are making progress. A blood test that replaces the cumbersome 24-hour 5-HIAA urine test is in trials. We have new methods of scanning that can light up the previously dark–nearly invisible–matter of NET cancer tumors.

Researching the dream

And our understanding of the disease is far greater than it was when Jane dreamed of defeating NET cancer. Researchers have grown NET cancer cell lines–though we need more–so therapies can be tested first in petri dishes rather than patients. We’ve begun DNA studies of people with NET cancer to look for genetics connections that will further help researchers understand how the tumors form and who is most at risk.

Detecting the disease remains critical–but difficult.

But there is still much more to do. Of all the treatments that go into trials only the tiniest fraction are ever approved for general use in patients. There are lots of dead ends in the research process.

The dream and the nightmare

And for all that research funding has improved, NET cancer is still a starving orphan at the cancer funding table.

We still are years from a cure…

Perhaps the greatest obstacle we face is still the lack of awareness of the disease–and that is changing only very slowly. Patients still face numerous wrong diagnoses–some still never get the correct diagnosis even after the disease kills them.

The dream lives on

Thirty-three people still die from NET cancer every day–and that number is likely growing because the number of diagnoses is growing. I heard an estimate last week that as many as 15,000 Americans will receive a NET cancer diagnosis this year. Better detection may be part of the reason, but no one can say for sure.

…an apt metaphor for the state of NET cancer research.

But our dream of a cure for NET cancer continues to move forward. Our dream of a world without NET cancer continues to move forward. Our dream that the nightmare of this disease will end with long and healthy lives continues to move forward. It is what Jane would want. It is what I want, too.

A new day a new project

I need non-financial help for Walking with Jane today. November 10 is Worldwide NET Cancer Awareness Day. On that day I want to do a 24 hour social media-thon to raise both money and awareness about NET cancer and carcinoid syndrome. I did my first of these last spring for our Relay for Life team–but I want to make this one closer to what I wanted that one to be: think video podcast on steroids.

To do that I need your active participation and advice.

Social Media-thon needs help from patients and caregivers

First, I want to do a video tribute to those who have died of NET cancer. This will open every hour of programming. If you know someone who died of NET cancer or carcinoid cancer, please email me a picture of them with their name at walkingwithjane@gmail.com.

I also want to do a similar piece with pictures of people who currently are living with NET cancer or carcinoid cancer at the bottom of the hour. If you have pictures of those folks please send them to walkingwithjane@gmail.com.

The truth is I know way too little…to even know the right questions to ask.

If you currently have the disease and can make a video of yourself talking about the disease and what it means to you, you can also send that to walkingwithjane@gmail.com.

If you are a caregiver, spouse, parent or child of someone dealing with this cancer and can make a video you can also send that to walkingwithjane@gmail.com.

Social Media-thon needs help from technical folks

From those of you with technical expertise, I need some I help as well.

1. I want to do a series of prerecorded interviews with researchers and doctors in the field and people who have lost loved ones to this disease. But I do not have a big budget for cameras and microphones, etc. What specific equipment should I buy to do this? From whom? I know i could rent or borrow, but I have other projects in mind and would prefer to have it close to hand when I need it.

2. I want to be able to do live bits as well as recorded bits. Do I need more than my Mac to do that? Eventually, I want to be able to do a weekly video podcast. What software do I need?

I need entertainers to help attract and hold an audience.

3. How much help am I going to need the day of the event on the technical side? Can I both host and produce at the same time?

4. Can I get away with iMovie or do I need something more robust for the pre-recorded pieces?

5. Whatever else I need to know that I am to ignorant to know I need to know?

You can reach me either through comments below or at walkingwithjane@gmail.com.

Need entertainment volunteers and advice for social media-thon

Finally, I need help from those of you in the entertainment business.

While this event is about NET cancer, I want it to have the look and feel of the Jerry Lewis Telethon for MDA. I need entertainers to help attract and hold an audience. And I have no idea how to make this piece of it work.

I want to do a video tribute to those who have died of NET cancer.

What are your suggestions? Can you tape something we can use that day? Should we tape something in front of a live audience? For those of you who sing or dance, what are the legal issues involved with using copyrighted songs if you are doing covers?

Several of you have offered to do concerts in the past. This may be a way to do that without going crazy with finding venues etc.

The truth is I know way too little about this side of things to even know the right questions to ask.

If you have thoughts or want to volunteer, you can leave those in the comments section below or email me at walkingwithjane@gmail.com.

–Harry Proudfoot

Chairman, Walking with Jane

Every walk goes somewhere

Bilbo Baggins used to say you have to be careful when you step out your door in the morning–that the road outside your door can sweep you off to places you had no thought about going to. Sunday’s Marathon Walk in support of the Jimmy Fund was exactly that type of journey.

…the cards are still on the table.

This was my third time walking the route from Hopkinton to Boston. Each of the previous walks have taken me, mentally and emotionally–if not physically–to new places in this Odyssey through NET cancer and grief.

Anger Walk

I was emotionally a wreck the first year. I was angry at myself for letting Jane die; angry at my body, which kept threatening to quit on me over the final ten miles of the course; angry at the medical community that had let Jane down for decades; angry at the federal government that had abandoned NET cancer patients to their fates in the late 1960s and never looked back; angry at the survivors of other cancers who had had all the advantages Jane never got; angry at the other couples I knew whose lives got to go on unchanged after I had lost my other half.

I don’t expect I will ever stop grieving for Jane…

I bottled up my rage that year. It helped me cross the finish line and do the day-to-day work of setting up fundraisers and Walking with Jane–but sometimes it leaked out at inappropriate times in inappropriate ways that left my friends wounded and left me increasingly convinced that I needed to withdraw from the world until I could trust myself with people again.

I realized my muscles didn’t hurt…

I am not, generally, an angry person. I’ve seen what I am capable of when I allow myself the luxury of letting it lay claim to me. I try to repress it, deny its existence, and control it. Even now, over three years after Jane was diagnosed–and 33 months after she died–there are still times I feel that anger building to an unhealthy eruption. But those times are fewer and fewer–and I like to think I have become better at dealing with them.

Sorrow Walk

Last year I walked most of the day alone. That walk was about sorrow. Every step called up vivid memories of the last months of Jane’s life: her constantly swollen feet, the swelling in her legs, the abortive walks, the day her doctor told her he thought she probably had cancer, the last vacation together, the biopsy, the diagnosis, her first hospital stay, the first tripnto Boston, the day we learned how damaged her heart really was, the final drive to Boston, pushing her in a wheelchair , waiting for the surgery to end, seeing her with all those tubes and wires in her, being there when she first woke up, the first carcinoid attack, the second carcinoid attack, the night before she lost consciousness for the last time, the words–“there is nothing more we can do”–my last words to her when she was awake, holding her hand, reading to her, her last breath, the calls,coming back to this empty house, the wake, the funeral…

Recovery Walk

Yesterday was different. The tone was set, I think, on Friday night at a dinner one of my former students did to support her walk. She invited her friends from high school–all of whom had Jane in class. They talked about their memories of her 20 years before the diagnosis–about how people had tried to guess what our relationship was, about being in class with Jane and learning chemistry and physics and life–and about earning whatever you got.

I was focussed on Jane and Jane’s health, not my own.

That night and Sunday’s walk took me through a wall I have wrestled with for months. Finally, I could see, for a sustained period, something beyond the memories of the end. We had a good life together that how she died had veiled from me emotionally for a long time. For a good part of the walk I was able to see those times with the same clarity I have seen those last months. And that ability has carried over into today.

The physical cost of caregiving

Will there continue to be days that are too painful for words? I am sure there will continue to be those days. But it is a blessing this morning to see her coming down the aisle in her wedding dress just as vividly as walking behind her casket down that same aisle at the end.

…we lose track of just how physically damaging the death of our spouse is to our own health.

While that is the most important part of what I discovered yesterday, it was not the only realization. I think we lose track of just how physically damaging the death of our spouse is to our own health. We talk about the importance of self-care and we focus on the obvious psychological trauma of watching hopelessly as half of our self vanishes. But we often lose sight of the physical damage we take in the process as well.

The walk to death

From the beginning of Jane’s struggle with NET cancer until her death–about six months–I lost over 20 pounds. I lost muscle, strength, endurance, and God alone knows what else in that time. I was focussed on Jane and Jane’s health, not my own. I ate poorly, slept poorly, and exercised neither my mind nor my body in any significant way if I did not see how it would help Jane. At one point one of the nurses handed me a razor and told me I needed to shave because it would help Jane see I was less worried than appeared. That was the only thing that got me to shave.

We had a good life together…

Summers, we climbed mountains together, Jane played tennis, I ran several miles a day. That stopped or was severely curtailed when she got sick–for both of us.

Heartbreak Hill

Yesterday, as I plowed through Heartbreak Hill, I realized my muscles didn’t hurt, that there was nothing labored in my breathing despite the pace I was making over what is universally considered the toughest part of the course–the piece that has daunted runners for years and had always pushed me to the point that the last miles become an effort of will more than of physical endurance.

Last year I walked most of the day alone.

It came to me then that I had spent the entire day to that point passing people–and that very few had passed me, save for the period right after lunch when I had been loosening up my muscles again. And other than as we got close the finish and the crowds became too dense, I never slowed down or got out of rhythm. Yesterday, there never came a point when the walk became an effort of will for me beyond ignoring the blisters that always form 20-odd miles in no matter how I tape my feet.

Physically healed, but emotionally?

While I am not emotionally healed by any stretch of the imagination, my body is, at last, physically healed. Given that my emotional health has always been closely tied to my physical health–and I think that is true for most people–I am at least hopeful that eventually the emotional wounds will become increasingly less debilitating. I don’t expect I will ever stop grieving for Jane, but if I am to finish the work she and I started–and the additional work our fight with NET cancer started–then I need to keep moving forward no matter what obstacles get in the way.

…I needed to withdraw from the world…

That requires a daily act of will. At first, it was about getting out of bed in the morning–and sometimes it still is. Then it was about eating and exercising–and sometimes it still is. Then it was about doing the reading and the writing and the organizing–and sometimes it still is.

The Gambler walk

Jane was addicted, especially in the hospital, to Kenny Rogers’ song The Gambler: “You never count your money/when you’re sitting at the table/There’ll be time enough for counting/when the dealing’s done.” It is easy to get caught up in each individual project and judge the success or failure of the entire enterprise by where you are at any given moment. But, to echo Sophocles, we only really know whether we have been successful or failed when our lives are over. While Jane’s life did not end the way we wanted it to, she told me the day before she went into the hospital that no matter what the outcome there was, she’d had a good life–and that I had made it good. I think she knew, for her, the dealing was done and that she was playing her last hand. She played it with grace and courage and turned what most would see as a losing hand into a winner.

…you have to be careful when you step out your door…

She did that through the most incredible series of acts of will I have ever seen. Beside her physical pain and endurance what I face over 26.2 miles is nothing. That knowledge got me through the first two walks and the preparations for the third. But yesterday’s walk did not require reminders of her pain or her struggle. It required I remember the totality of our life together–and that the cards are still on the table.

–Harry Proudfoot

I wrote this for my wife Jane, who died of NET cancer December 10, 2010 on what would have been our 24th anniversary, September 2, 2013.

For Jane on Our 24th Anniversary

September 2, 2013

We cannot renew our vows today

We cannot renew our vows today.
We will not wake together,
Nor open cards and presents
As the sun rises.

We cannot renew our vows today.
We will not hold hands on some mountaintop,
Nor share soft kisses
Beneath the sun at noon.

We cannot renew our vows today.
We will not share an evening meal,
Nor toast another dozen years
At sunset.

We cannot renew our vows today.
We will not sleep entwined,
Nor whisper wishes
To the moon and stars.

We cannot renew our vows today.
You lie beneath the hilltop
And skirt the heavens.
I walk the earth.

We cannot renew our vows today,
And I am drowned in salted rain.
–Harry Proudfoot

Fighting through the junk mail

I spent part of my afternoon sifting through the pile of junk mail I receive every week. There were offers from magazines and banks and credit card companies. There were offers from cable and satellite companies. And there were requests from charities of every size, shape and description.

I’ll keep trying to keep things simple…

I go through it all. It consumes about an hour every week. I could, I suppose, not bother opening the envelopes and just throw everything that is not a bill in the recycling bin, but sometimes there is a nickel or a dime or a couple of pennies in the envelope and–having been raised by a child of the depression–I can’t bring myself to throw away money. The coins–16 cents today–go into a jar and eventually turn into a donation to Relay for Life. And there are nice cards, envelopes, or address labels in others. Sometimes there is a notepad. I use those as well and take the money I save and put it into one of the charities I support. It is currently calendar season and by November I will have enough of those to give one to almost everyone I know.

The evolution of charitable junk mail

There was one particularly thick piece of junk mail today. It included the usual well-written letter designed to pluck sympathy from the coldest stone, five nice greeting cards with matching envelopes, a sheet of matching address labels, a matching notepad, a list of reasons why to support them and not one of their equally eloquent rivals, and a return envelope for your donation.

There is an absolute torrent of mail out there…

I am old enough to remember a time when a mailing from a charity included nothing more than a letter asking for your help and a stamped reply envelope. But then I also remember a time when it did not take an hour or more a week to go through the mail to sift out the nuggets that meant something: birthday cards, letters from friends, magazines…

The irony of my situation

There is, of course, a great deal of irony in me writing this. As chairman of Walking with Jane, I periodically find myself adding to the flow of  junk mail entering people’s houses. I try to keep the package simple: a letter, a return envelope, and a response form.

My personal philosophy on fundraising is pretty simple…

I’ve tried added inducements twice. Last year I offered people who donated $100 or more a t-shirt. It made no positive difference. People who were going to give $100 did. The shirt did not cause anyone to up their contribution. The offer made some people angry–they wanted the money to go to the cause, not to producing or mailing the shirts.

Why we are trying another inducement

Currently, we are offering people who donate $10 or more six chances to get a one-of-a-kind quilt a former student made for us. I’m hoping this will get more people to donate–though beating our 25 percent reply rate over our last two direct mail campaigns may prove a stiff test.

…what we are trying to do: get the word out about NET cancer and its symptoms.

Increasing the size of the donor base is important to me not because it will result in a huge increase in fundraising–though that would be nice– but because it will mean more people are interacting with another important part of what we are trying to do: get the word out about NET cancer and its symptoms.

Educating people about NET cancer matters

We send out a pamphlet on the most common type of NET cancer with every thank you note for every donation–regardless of size. My hope is people will read it, recognize the symptoms in themselves or someone they know, share it with friends and co-workers–maybe even post it in their workplace. There are potentially three million people in America who have NET cancer and will never know they have it. It will kill them–but they’ll be told it was something else that did the deed.

There is…a great deal of irony in me writing this.

My personal philosophy on fundraising is pretty simple: supply people with what they need to make a rational decision. Gifts in the initial mailing won’t do that. Gifts for donations probably won’t either.

Junk mail and the bottom line

But I understand why the various charities do those things. There is an absolute torrent of mail out there and somehow you have to separate your charity from everyone else’s. If one group has success in increasing donations with mailing labels, everyone else has to match that–or beat it–or so the prevailing wisdom goes.

I am old enough to remember a time when a mailing from a charity included nothing more than a letter asking for your help…

Yet money spent on mailing labels, note pads and greeting cards is money that can’t be spent on the cause you are working for.

Keeping things simple

Emily Brinkmeyer-Kraus made our quilt. She donated the materials, her design time and her labor. She even shipped it here herself. To the extent other charities have similar arrangements with the suppliers of their inducements, I won’t complain. But I don’t know how those things work for them.

I can’t bring myself to throw away money.

Meanwhile, I’ll keep trying to keep things simple: two fundraising mailings a year, I’ll put the stamps on in both directions, and I won’t share your name with any other organization.

Sometimes life intervenes

My last post here was more than a month ago. I said then I hoped to post more often for the rest of the summer. Unfortunately, life intervened in the form of three deaths in four weeks, a sinkhole in the yard that attempted to swallow me whole, the second Walking with Jane direct mail campaign of the year, some landscaping issues, and doubts that what I am doing here and elsewhere against NET cancer is making a substantial difference.

…the news from Dana-Farber and elsewhere has improved in recent months.

But more difficult than any of that is what I have now accepted as the reality of August. This is the month Jane and I took our last vacation together, the month she had the biopsy on the tumors in her liver, the month we received the diagnosis that has defined everything since, the month of her first hospital stay, the month they told us we needed to go to Boston…

Walking with Jane year started fast…

Every little bump beyond the downer those anniversaries are further complicates my life–and there have been lots of those over the last four months. I have a dream for Walking with Jane–a dream based in what I thought was a realistic plan and a huge need. For the first two years we exceeded my expectations–we beat every goal I set–and beat them easily.

…we will do a live Web/Social Mediathon for NET Cancer Day on November 10.

And the first three months of this year started off well enough. By March 31 we had already generated over $6000. During that same period the previous year we had raised virtually nothing. We were two weeks away from a Comedy Night I was convinced would be huge. It made $700. The house was virtually empty.

Second quarter short of hopes

The Pasta Supper–a repeat of the previous year’s second biggest success–I expected would grow, but it shrank instead. We barely reached the previous year’s numbers because another group agreed to match what we raised up to $500.

…this website has fallen on hard times as well.

We attracted more exhibitors for our second annual Craft and Yard Sale but fewer customers. That hit everyone’s bottom line–including ours. My second $24-in-24 Hours event drew a third less money than it did the year before.

Walking with Jane Relay team up marginally

I personally visited over 300 businesses looking for sponsors for Relay for Life. Five of them actually made donations. That $1000 was the difference between what we raised a year ago and what we raised this year.

My goal this year is to generate $150-200,000.

That was a far cry from the goal–which was to double what we had pledged to raise the year before–before the rains came.

Marathon team behind last year

My work on the Marathon Walk has–for me–been similarly disappointing. While I have already raised about $1,300 more than I raised all of last year to this point, our team is significantly smaller than in 2012. And only one Walker besides me is back from last year. Part of that is because of the death from NET cancer of the father of two members of last year’s team who had recruited a number of friends to walk with them. His death in early June put an end to their plans to walk this year, but a number of people have made donations to the Walking with Jane Fund at Dana-Farber in his memory.

…our team is significantly smaller than in 2012.

But a number of other people who walked last year have decided not to walk this year as well. I only hope similar catastrophes have not hit them as well.

In any event, we will be hard-pressed to match last year’s Marathon Walk numbers this year–let alone double them as I had hoped–and expected.

Walking with Jane on the road ahead

Last year, by December 31 we had generated just over $100,000 for cancer research, two-thirds of which went into NET cancer research. Part of that came about because of a one-time two-for-one matching grant that will not be repeated this year that turned $10,000 into $30,000. My goal this year is to generate $150-200,000.

…we will be hard-pressed to match last year’s Marathon Walk numbers…

So far this year we have directly generated just over $35,000. I have trouble imagining where more than $30–35,000 more will come from in the next three-and-a-third months. This is not to say I am giving up–far from it. But matching last year is going to be a struggle–let alone getting to the $150,000 Year Three goal. I have a couple ideas I am working on that might pull that fat out of the fire.

Getting the Walking with Jane word out

Equally disappointing, however, have been our efforts to get the word out about NET cancer. Last week, I received a note from a 26-year-old in the SouthCoast area that includes Fall River and New Bedford. She has NET cancer and has been symptomatic for eight years. It was only this spring she got the right diagnosis–and she had to go to Tennessee to get it. This despite the newspaper articles, radio broadcasts and other media work we have done locally to get the word out to both doctors and potential patients.

I personally visited over 300 businesses looking for sponsors for Relay…

And this website has fallen on hard times as well. A year ago, we were closing in on 12,000 views. Today, we are just over 18,000 total. in our second year we have had barely half as many views as we did in our first.

Updating Walking with Jane site

One of the things we are working on is updating the site–which was state of the art when we launched it. We hope to make the site more visual and include video links to a YouTube channel. I am thinking about regular podcasts, as well, though what their content would look like I am not certain of yet.

My second $24-in-24 Hours event drew a third less money…

I do know we will do a live Web/Social Mediathon for NET Cancer Day on November 10. I will start working on the details of that about a week after the Marathon Walk. I want it to be more audio-visual than the one we did for $24-in-24-Hours back in April.

 NET cancer research making real progress

But while things have not gone as well as I would like here, the news from Dana-Farber and elsewhere has improved in recent months. DFCI closed on a $525,000 donation last month to fund NET cancer research, someone stepped up to fund the entire Phase I trial of the Uppsala virus, and there is some interesting new research being done in the US elsewhere that shows significant promise.

…the month we received the diagnosis that has defined everything since…

Where there is light, there is hope, as my mother used to say.

Editor’s Note: Twice each year I write what I call my “tin cup” letter. In it I try to tell the story of NET cancer as seen through my eyes in hopes the people I send it to will be moved to help others avoid what happened to Jane and me 31 months and 13 days ago.

It is no easy thing for me to ask people for their help. Jane and I were both independent sorts who always exhausted every other option before asking for assistance. Even now, I prefer doing something alone to imposing on others for even the smallest things.

But NET cancer is so much bigger than I am that I have no choice but to beg help wherever I can find it. 

NET cancer letter

Dear friends,

Thirty–three people died of NET Cancer in the US on December 10, 2010. My wife Jane was one of them. About 33 people have died of this supposedly rare form of cancer every day since. As I write this, that’s 30,723 human beings—each of whom had a story similar to Jane’s in many details—have died of NET cancer.

…we’ve barely scratched the surface.

On that same day, about 33 people received the news that they had NET cancer. About the same number have received the same news every day since: one dies, another learns they have it.

I know what it is to be in the room with your spouse when you hear that news—know what it’s like to hear a trusted doctor tell you he or she has never heard of the disease before. When a doctor tells you your spouse has breast cancer or lung cancer or prostate cancer, you know what that is and you know there are treatments that have been clearly shown to offer hope for a cure. You are worried, you are anxious, but you have hope.

We’ve made progress since Jane’s death…

When your doctor says he’s never heard of the form of cancer your wife has you get this awful feeling in the pit of your stomach you know must never reach your face. You are there to be her rock no matter how rocked you are by what you have just heard.

When the first oncologist you meet with tells you she has never seen a case of this cancer before, although she has heard of it, there is not much reassurance there for either of you. When she says there is no cure for anything beyond Stage I of that cancer—and you all know your wife’s cancer is well beyond that—you all know you all want to cry, but that none of you will because you are all determined to be strong for each other. There are treatments that can slow the progression of the disease—and if you can just slow the disease down enough maybe someone will develop a way to cure it in the time those treatments will buy you.

Jane’s story does not have a happy ending…

Jane said that day she wanted to be the first to beat NET cancer—that she would do whatever it took. In the meantime, she said, she was not going to think about dying of cancer: she was going to live with cancer. And she did just that.

Jane’s story does not have a happy ending—at least not for her—at least not yet. She died in my arms just before 8 p.m. in the ICU at Brigham & Women’s Hospital in Boston. Her last breath went into my mouth and nostrils and filled me with both incredible love and incredible anger. We had plans. We were six months from retirement. That was all dust and ashes in my mouth. But I knew what I had to do: I had to help find a cure for the cancer that took away all our dreams and plans.

 …if you can just slow the disease down enough…

We’ve made progress since Jane’s death: the Dana-Farber Cancer Institute set up the Program in Neuroendocrine and Carcinoid Cancer; researchers have developed an animal model for the disease; other researchers have managed, finally, to grow NET cancer cells in vitro so that we can study the disease outside of a patient’s body; Uppsala University in Sweden has scraped together the money for a Phase I trial of a virus that eats NET cancer cells in the laboratory; another team in the US has developed a similar virus that kills many other forms of cancer as well; Jane’s case has led to a better understanding of how NET cancer affects the heart and helped establish better protocols for when and how to deal with that when it happens; scientists are developing a genetic profile of NET cancer patients and comparing their DNA to that of those who do not have the disease; patients with liver involvement are being treated with liver embolization techniques that knock those metastases back on their heels…

You are there to be her rock no matter how rocked you are by what you have just heard.

But a cure, even if the Uppsala Virus or the Seneca Valley Virus works in humans as well as it works in the lab–and the trials go flawlessly–is still years, and tens of millions—perhaps hundreds of millions—of dollars away.

Since May of 2011 Walking with Jane has generated nearly $170,000 for cancer research in general—and NET Cancer in specific. We’ve generated another $5000 for academic scholarships for students planning to either teach science or enter the medical field. I’ve walked the length of the Boston Marathon for the Jimmy Fund twice to raise money for NET cancer research and am currently training to do so again. Over the course of those three walks I have raised nearly $26,000 so far. But in the face of the millions of dollars it will take to make Jane’s dream of beating NET cancer real, we’ve barely scratched the surface.

…one dies, another learns they have it.

That’s why I’m asking you today for your help. The majority of general practitioners still have never heard of NET cancer; we still have no cure for the disease; we still can’t reliably detect it much of the time; we don’t really even know how many people have it and don’t know it.

Please, do what you can.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

P.S. I promise not to share your name and address with anyone. Nor will I contact you for fundraising purposes more than twice a year.

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

organized under the laws of the Commonwealth of Massachusetts.

Cancer funding woes

I’m worried. As I have said before when general cancer funding gets a cold, NET cancer funding gets pneumonia. But what seems to be going on in general cancer funding looks like much more than a cold–and what that means for NET cancer funding I’d prefer not to think about. That situation is making our Marathon Walk effort critical in the next few weeks.

The economy, the sequester…

The Komen Foundation has cancelled several events in major US cities this year because of hefty declines in registrations. Sources at the American Cancer Society tell me few Relays are reaching their goals for the year and that many are off substantially. The federal budget sequester is cutting the funds for cancer research by 10 percent across the board.

…the pressure on the budget of the Program in Neuroendocrine and Carcinoid Cancer at DFCI is going to be nasty…

My general sense is that fundraising for the Boston MarathonWalk are running behind as well. With less than two months to go before the event it seems to me the top teams and individuals have not generally raised as much as they had a year ago. I can’t say for certain that is true: I did not write down who had raised what at what point last year–and my personal success in raising money for that event has been much better so far this year than it was last year.

Hitting the wall

But my fundraising efforts have hit a wall in recent months. Our Walking with Jane goal for the Greater Fall River Relay for Life was $20,000 this year. We did not raise even half of that: $8,700. We saw slight bumps in three major fundraisers, but apparel sales slumped and a third major fundraiser fell $800 short of the previous year. We attracted several sponsors for the event, but far fewer than I expected. We still ended the year up by about $1,300.

…matching two years ago will take a herculean effort.

All that money goes into general cancer research and patient support.

Our Marathon Walk problem

Two years ago, the Caring for Carcinoid Marathon Walk team raised over $35,000 for NET cancer research. Last year, I was the only returning member of that team, and while my personal fundraising total more than doubled, we saw our team total decline by nearly half to just over $18,000. This year, so far, we have just two people back from last year and three rookies. Part of that has to do with the death of a family member to NET cancer barely a month ago, but it is increasingly clear even reaching last year’s team total may be difficult–and matching two years ago will take a herculean effort.

…my fundraising efforts have hit a wall…

My personal Marathon Walk fundraising is already about $400 ahead of what I raised total last year. But reaching the $20,000 goal I set for myself there seems increasingly difficult. A major fundraiser I have been working on seems increasingly unlikely to happen at all–and the energy for planning and executing some other ideas before the Jimmy Fund Walk is more difficult to find in the weeks since the Relay. The heat and humidity of recent weeks is not helping.

The big Marathon Walk NET cancer picture

I think our team will ultimately reach and exceed the amount we raised last year, which in the face of what is going on nationally will be a considerable accomplishment. But I don’t think it will be enough. There is another problem over which I have no control.

…what that means for NET cancer funding I’d prefer not to think about.

For several years there has been another Marathon Walk team raising money specifically for NET cancer. Their fundraising–even in our best year two years ago–has dwarfed our efforts. That team–at least so far–does not seem to exist this year. I’m hoping they have just changed their name. But if they haven’t, the pressure on the budget of the Program in Neuroendocrine and Carcinoid Cancer at DFCI is going to be nasty if we do not find some way to replace that money.

NET cancer and the widower

I have not been very good about posting here in recent months. Part of that had to do with my work as chairman of the Relay for Life of Greater Fall River. Part of it has had to do with the work of fundraising for NET cancer research. But the lion’s share of the difficulty has come from trying to deal with the emotions from the loss of my wife Jane in December of 2010 to NET cancer that are continuously in my face.

I need to take a breath sometimes.

My grief has been slow to leave me. In fact, some days are worse than the days immediately following her death. Grief does not magically end when one has confronted all the “firsts” of the initial year. Rather, it is an ongoing journey that does not entirely end until one ceases, himself, to draw breath.

Confronting NET cancer daily

But I have slowly come to understand that my work on cancer in general–and NET cancer in specific–has made that journey much more difficult. My life now brings me into almost constant contact with cancer patients and their caregivers. In the case of NET cancer, it brings me into frequent contact with spouses and the adult children who have lost someone close to them to NET cancer.

Her death killed a part of me I never expect to get back.

Those meetings and conversations take me back to the last months of Jane’s life. The research I do on the subject brings me to ideas and treatments I can only wish were there for Jane–but were not. I play the “what if…” game every time I read a new paper on the subject. Sometimes it gets to be too much.

The breakdown

Early last week, I cracked entirely. Monday and Tuesday I woke up with a list of things I wanted to do: draft a new fundraising letter, catch up on the research I have watched build up the last few months because of the commitments my Relay fundraising and chairmanship demanded, do recruiting for our Marathon Walk team…

Early last week, I cracked entirely.

Instead, I vanished into four novels, several mindless movies, two seasons of missed television shows, some retail therapy, and a used book sale. I took naps, stayed up late, and slept in late. I even sat on the deck and watched the hummingbirds flit around the feeders. My conscience kept whispering there were things I needed to be doing, but my mind and body both shouted it down.

Cancer never sleeps, never rests

Cancer may never sleep–never take a break–but the human mind, the human body, the human spirit must recreate itself periodically.

Sometimes it gets to be too much.

Three years ago, Jane’s doctor told her he thought she probably had cancer–but that we could not be sure until after the biopsy. It was news we were both expecting. Thirty-one months and five days ago, Jane died. Her death killed a part of me I never expect to get back.

Cancer changes everything

Cancer does that to people. It kills individuals but it also kills those they leave behind. And even when it does not kill the body, it changes everything. No one walks into the tunnel that is cancer and comes out the other side unchanged.

My grief has been slow to leave me.

I’m not done with fighting cancer. I am not done with fighting NET cancer. But I need to take a breath sometimes. Sometimes the grief will overwhelm me and I’ll need to just curl up in a corner and cry.

But I’ll always be back. This is a fight that is too important.