Category Archives: Uncategorized

Funding research for NET cancer at DFCI

Uncategorized

Fighting NET cancer

Dear Friends,

I will present the seventh Walking with Jane Scholarship at Westport High School tonight. I confront that performance, as I do every year, with very mixed emotions: I am happy we are funding one student so she can pursue her dreams; I am saddened that Jane is not here to help make those dreams reality. To say that, after 66 months, I still miss Jane as much as the day she died is an understatement. The tears just refuse to stop.

…we’re still working on it.

That scholarship is just one of the ways I try to keep the fight against NET cancer going. It’s designed to create medical professionals and researchers—and the teachers who will inspire the next generation of scientists the way Jane tried to throughout her life.

NET cancer funding progress

I personally donate the money for that scholarship every year—as I do for the smaller scholarship we give at Bridgewater State University, Jane’s alma mater. I wish NET cancer research was so well-funded this letter could be about raising money for those. But by the time those students reach their personal educational goals and are in a position to help, more than 60,000 NET cancer patients will have died, at a minimum.

The tears just refuse to stop.

Financially, NET cancer research is in far better shape than it was six years ago when Jane was first being diagnosed. That year, we spent less than $2 million on research. Last year, we saw that number finally top $8 million. That’s still a rounding error on what we spend on any one of the more well-known cancers, but it is progress—progress we desperately need to keep making.

Why increased funding matters

You see, the NET cancer problem is getting bigger. When Jane was diagnosed, we were diagnosing about 10,000 cases a year. Now it is over 15,000 a year. Medical professionals are now willing to say there are at least 230,000 undiagnosed cases out there in the US alone. And while we have a better understanding of the disease than we did in 2010, better diagnostic tools and a couple more arrows in the quiver to help patients deal with the symptoms, we still have nothing that looks like a cure.

That’s still a rounding error…

The Dana-Farber Cancer Institute in Boston has been at the forefront of the research that has both improved patients’ lives and our understanding of the disease. Three of the treatments currently on the cutting edge of NET cancer care were developed there. DFCI doctors Matt Kulke and Jennifer Chan—Jane’s oncologist—were asked to edit an edition of Hematology/Oncology Clinics that focused exclusively on NET cancer this winter.

What our funding has done

When we finally find a cure, it will likely grow out of the research your donations to Walking with Jane for my Marathon Walks have made possible. Since 2011, my Walks have created over $77,000 for NET cancer research at DFCI. The teams I’ve led have raised over $173,000. People like you have been the key part of that effort. Our average contributor donates just $25. Yet last year, I was the eighth best fundraiser for the Walk. Our team also finished eighth.

…we still have nothing that looks like a cure.

But we are way behind where we were a year ago in terms of fundraising. I’ve had a difficult winter and spring, culminating in an old friend being diagnosed with brain cancer just a few weeks ago. My winter fundraising letter made it to the Internet, but never to the US Mail. Our other efforts have encountered bad weather and worse timing.

Help a funding comeback

We still have three months, though, to change things. We have $5000 in matching money available between now and September 1—which means your tax-deductible donation can be matched dollar-for-dollar by an anonymous donor to effectively double what you give. Your employer may also have a program to match your donation, which could mean even more money to fight NET cancer through your effort.

Our team also finished eighth.

And we’ll keep doing all we can to raise money in other ways: The Walking with Jane Miniature Golf Open at Caddy Shack in Dartmouth is August 4; The Hank Landers Charity Golf Tournament at the Bradford Country Club in Haverhill is August 6; if you shop amazon.com, you can have them donate a part of what you pay to Walking with Jane just by asking; and I’ll be at craft shows and yard sales at every opportunity between now and October.

Every dollar–every penny–counts

Once a week, I visit Jane’s grave. Every week, I tell her we haven’t found the answer to NET cancer yet, “but we’re still working on it.”

We have $5000 in matching money available…

Some day, I want to tell her we have the answer. You can help make that day happen by donating as generously as you can today. Every dollar counts—and every penny will go to NET cancer research.

Donate now.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Captain, NETwalkers Alliance Jimmy Fund Marathon Walk Team

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

organized under the laws of the Commonwealth of Massachusetts.

Limited editions of my photographs will be available at craft fairs this summer as part of our NETwalkers Alliance funding efforts.
Limited editions of my photographs will be available at craft fairs this summer as part of our NETwalkers Alliance funding efforts.

 

 

 

Lessons learned? Maybe, maybe not

Death, Grief, Jane, Uncategorized

Summer is coming

Good teachers are exhausted the last few weeks of the school year. Athletes talk about leaving it all on the field. Teachers leave more than that in the classroom. For 10 months, every waking moment is about the students sitting in front of you for six hours a day. Your nights and weekends are not your own. They are burned up grading and commenting on student work–and on preparing the next day’s slate of lessons.

Of course, I may be entirely wrong.

Six years ago, Jane and I were coming to the end of what had been our most difficult year teaching. Jane was hit hard by the H1N1 flu in October and had developed pneumonia in the midst of that struggle. She missed nearly a month of work and had tried to find creative ways to get her students caught up–especially those in AP.

Lessons of a Winter’s Tale

In February, she started having swollen feet at the end of the day. Each night as she worked on grading papers and I reread the novels I was teaching, I would massage her feet to try to ease the swelling and the pain she was experiencing. Jane spent every day on her feet on a hard floor. Her feet had always hurt. The swelling just seemed a new addition to the aches.

Your nights and weekends are not your own.

But the swelling got worse and crept up her shins to her knees as the spring arrived. She was having trouble with the stairs in the building. Sometimes, she admitted later, she seemed to be talking to her students from a great distance. I tried to get her to see her doctor–but she worried about missing more time with the AP exam looming.

The death of spring

We went for a walk one afternoon. It was something we did after dinner as the weather warmed. We were coming up a slight incline and Jane suddenly said she needed to sit down. She eased herself onto the curb. We thought she simply hadn’t fully recovered from the illnesses that had fallen on her that fall. In a few minutes, she felt fine and we continued the walk.

…I would massage her feet…

But Jane’s heart was the problem. The NET cancer had begun eating away at the valves in her heart. The swelling in her legs was the result of fluid leaking from those valves and flowing into her lower extremities. Six months later, she would be dead.

Lessons no one saw

Sixty-six months ago–five-and-one-half years ago–today, our closest friends gathered in her hospital room with me to bear witness to her passing. I was strong that day. I read to her, recited poems, said our prayers for the dying and the dead. We talked about the woman she was and how she had led her life. And then she was gone.

…Jane’s heart was the problem.

I stayed strong through the calls to relatives and friends; stayed strong on the ride home and through the public events of the days that followed–the wake, the funeral, the repast, the small gathering afterward. Inside, I was as shattered as a human being can be. But no one saw that. I cried when I was alone, screamed when I was alone, mourned when I was alone.

Lessons in avoiding addiction

I went back to work two days after the funeral. Our students had lost their mother. I would not let them lose their father as well. But I was not right in the head. I’d read a paper three times before it made sense–and I ‘d know the problem was not the writer, but me. I remember almost nothing about the last six months of my teaching career. I’d like to say I was drunk–but I was stone-cold sober. Addiction runs in my family, and I knew if I started drinking I would never stop.

…I was as shattered as a human being can be.

Maybe I should have.

Lessons from my addiction

Instead, I went to war against NET cancer. I wrote pamphlets and did fundraisers. I talked to doctors and nurses and reporters and ordinary people. There were times I reminded myself of Coleridge’s “Ancient Mariner,” condemned to recite his sad tale over and over again to the ears of people who had other things to do with their lives than listen to me talk about the tragedy of mine.

…I was not right in the head.

I could do nothing for Jane. NET cancer had snuck up on her–snuck up on us both–and sucked the life out of her like an aphid on a leaf. I’d failed her–some would say I was meant to–but if I could find a way, it would not happen to anyone else. Awareness? I’d been in the awareness business for years. Fundraising? Not my long suit, but I’d learn. As one of my students said to another, “If I were NET cancer, I’d be afraid–I’d be very afraid.”

Nothing to fear

That confidence was grossly overrated. We’ve made progress against NET cancer, both in terms of science and in terms of awareness since Jane’s death. But I’ve had very little to do with either. I do what I can, but my friends are not rich and I don’t have anything that looks remotely like Bernie Sanders’ mailing list. Local newspapers give me space periodically, but I still have not figured out how to get the major media outlets to pay attention.

“If I were NET cancer, I’d be afraid–I’d be very afraid.”

My supposed strength is an illusion. Sixty-six months after Jane died, I am still deeply in mourning. It’s hard to make headway when part of every month vanishes in a miasma of guilt–I should have saved her–and mental and emotional paralysis. I crawl into bed too often wondering where the day went and how nothing on the to-do list got finished–or even started.

Fear itself

I’ve no idea where these sixty-six months have gone. Large chunks of the first three years simply don’t exist in my memory. I go back and read some of what I’ve written here and elsewhere to discover who I was pretending to be at the time. The only thing I know with certainty is that everything hurt like hell every day–and that I worked really hard to create the illusion that it didn’t.

My supposed strength is an illusion.

And I know I am still not quite right in the head. There are still boxes of Jane’s things I keep making excuses not to open or give away; boxes of mugs we bought together I’ll never use again but can’t bring myself to part with. I bought new furniture for the living room nearly a year ago. The old stuff is still in the basement, waiting for me to find someone who wants it.

Discovering lessons at home

And sometime in the last month or so, I’ve realized I spend an enormous amount of time in the living room–the one room I’ve redone nearly completely since Jane’s death. I still sleep in the bed we bought when we got married, surrounded by the rest of that bedroom set. Yes, I moved it into a different room and repainted the walls, but it is still as though Jane never died.

…I am still not quite right in the head.

And other than changing the orientation of the dining room table, the dining room is almost exactly as she left it. I eat in the kitchen, except when I have major company. I am not comfortable there otherwise. Meanwhile, as I’ve begun to revamp the landscaping in major ways, I find myself increasingly making excuses to sit outside, even when it is cooler than I’d like.

Lessons on moving forward

Two days ago, I did what I likely should have done shortly after Jane died: I ordered a new bedroom set and a new dining room table that reflects who I am rather than who we were. I spent most of the last two days going through the bedroom and the study, cleaning out closets and drawers and making decisions about what needs to stay and what needs to go–and marveling at some of the things I’d set aside as too emotional to part with four years ago. I mean, empty candy tins? Really?

I still sleep in the bed we bought…

Jane didn’t want me turning the house into a shrine of memories about her. I promised her I wouldn’t do that. The last few weeks, however, I’ve realized that is exactly what I’ve done in too many ways. I wonder now if while trying to be strong–sleeping in our bed, sitting in our chairs, working at our table–they are, after all, just objects–I wasn’t undermining my own healing. We become emotionally attached to things to begin with; when those things are attached psychologically to a person we have deep feelings about, that emotional attachment to those things grows even stronger.

Lessons ahead

Of course, I may be entirely wrong. I’m still in love with Jane. We built this house together–and no matter what changes I make to it, that will remain the case. My mind may be irreparably damaged and all of this no more than rearranging the deck chairs on the Titanic.

I mean, empty candy tins? Really?

But I’ve taken the plunge. For the next several weeks I’ll be flying through the air while I await the new furniture and continue the landscaping projects. The water may prove too cold, too hot or just right. It doesn’t matter. I’m committed.

And, in the meantime if you know anyone local who’d like a used bedroom, dining room table and chairs, or couch and love seat…

My landscaping project has uncovered a number of lessons--and not all of them have to do with paths and garden beds. The most important lesson may be that changing the environment may change the pattern of ones grief.
My landscaping project has uncovered a number of lessons–and not all of them have to do with paths and garden beds. The most important lesson may be that changing the environment may change the pattern of ones grief.

Waiting for the click

Death, Grief, Jane, Uncategorized

Looking for a way to cope

In Tennessee Williams Cat on a Hot Tin Roof, Brick talks about waiting for the click–the point at which all the pain drains away and everything seems all right. He gets there by consuming large quantities of alcohol. I don’t drink very much or very often–and even less so the last six weeks. But, like Brick, I am waiting for the click.

…I haven’t done it as well as I could.

I’ve been waiting for it for 63 months now. I’ve tried losing myself in work, in films, in books, in research; I’ve tried meditation, grief groups, and therapy. Increasingly, I begin to feel my father had it right the night Jane died: there is nothing anyone can say that will make any of this feel any better. In truth, there is nothing anyone–including me, apparently–can do to make the hurt go away.

The click in my head

Yes, it is less paralyzing most of time than it was at the beginning. Lose an arm or a leg and you will learn to cope over time. It does not bring the limb back–you always miss it–but you do figure out a series of workarounds that enable you to look normal from the outside a good percentage of the time. But you know it isn’t the same even if the world can forget.

…my father had it right…

I keep hoping, though–foolish as that is. In December, I passed the five-year mark since Jane’s death. I thought that would be the moment of the click in my head–at least that was what a part of me wanted to believe. I resolved to cut back on my visits to her grave; I resolved to at least think about dating again; I resolved to do more things that would make me happy.

Death has murdered sleep

I’d been there several times before. I believed the nonsense about the first year–what the grief community calls “The Year of Firsts“–being the hardest. The second year was much harder than the first because–no matter how hard you try to believe the second year will be better, the person you loved is gone and not coming back except in your dreams–and when you wake up it is so bad that you don’t want to go back to sleep again.

I keep hoping, though–foolish as that is.

You start putting off going to bed at night because you can’t handle the dreams–no matter how happy they make you feel when you are in them. You gradually come to see them as you see drugs–a temporary escape that makes things worse when you come down from them. But lack of sleep carries its own consequences. The depression simply increases from another angle.

Everything comes with a price

I knew better than to expect much from the second anniversary of Jane’s death. But I had hopes for the third–and for the 25th anniversary of our marriage–and, most recently, for the fifth anniversary of her death. There is no magic bullet for grief, though.

…you don’t want to go back to sleep again.

Intellectually, I know that. I know taking her pictures out of the main living areas was a good thing. I know emptying her suitcase last week was a good thing. I know slowly redesigning the yard and the rooms of the house is a good thing. But each comes with an immediate and crippling emotional price–just as each date on the calendar does.

Why, this is Hell…

Much of January and February of this year were dead months. I had trouble getting up, trouble writing, trouble thinking, trouble getting anything done. They were the price of my expectations of what that fifth anniversary would mean. There was no click and my mind descended into the Hell of its own making.

Intellectually, I know that.

Hell is a place of pain without hope of an ending made worse by the illusion that things will get better. Sometimes, I live there.  But I am also the ghost of Jacob Marley. I can do nothing about my own pain–but perhaps I can find some way to ease the spirits of the other damned souls; perhaps I can find a way to prevent–or at least delay–others from joining me here.

Fighting destiny

In my head, I know it is a foolish idea. I know that at least half the population is destined to lose someone they care about; that half of us will be widows or widowers no matter what I do. I cannot stop death. I can only help to slow it down, at best. In the cosmic scale, it amounts to nothing.

There was no click…

But my heart sees the mother with her children, the husband with his wife, the child with her parents. We do not live on a cosmic scale–we live within the construct of our short lives in these fragile bodies. People will tell you these bodies are but vehicles or vessels for souls. I will tell you the same thing.

Body and soul

But in this world we inhabit our bodies matter every bit as much to us as our souls to us. This life is the one that matters now–and it may be the only thing that actually does. Jane’s soul my flit about the house, but I cannot hold it in my arms or feel its breath in my ear. Absent that, she has likely better things to do than hang around waiting for me.

We do not live on a cosmic scale…

And I have better things to do than lying in bed mourning for things that are gone and cannot be recalled in any meaningful way. Jane and I lived to ease the suffering of others, to offer a hand up out of ignorance and poverty, and to bring some small modicum of joy and hope to those who need it.

Waiting for Godot?

For 63 months, I’ve tried to keep doing that. My disappointment is I haven’t done it as well as I could. But, like the person who has lost an arm, or more, perhaps I need to work harder on the workarounds and stop waiting for the click.

…I have better things to do…

We live by living–and not by waiting.

A plant grows by living. It may pause now and again--waiting for the click that tells it growth is possible again--but it never really stops doing what it does to survive.
A plant grows by living. It may pause now and again–waiting for the click that tells it growth is possible again–but it never really stops doing what it does to survive.

 

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.)  

 

 

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: reflections on NET cancer–Part 1

Fundraising, Goals, Marketing NETs, Uncategorized

Five years of unreached goals

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

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

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

Five years of raising awareness

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

Part of it was my own innocence.

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

Five years of reaching out

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

The most basic goal was to work on awareness…

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

Five years of figuring things out

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

Fewer than 1000 people have seen them.

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

Five years of uncertainty

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

The general public remains largely ignorant…

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

Five years of building research

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

…we need to make that jump.

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

Five years of building support

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

…I had very little to do with that.

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

Five years of external obstacles

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

…money was the third piece of the problem.

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

At least not yet.

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

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

End of year greetings and reflections

Goals, Grief, Holidays, Uncategorized

Time for reflection

Dear friends,

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

Have a blessed holiday season…

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

A year of challenges

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

I still observe them all.

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

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

A year of growth

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

…I lost several friends…

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

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

A time to heal

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

…a thing I thoroughly enjoyed…

I think I am ready for that this year.

I hope you and yours are as well.

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

Pax et lux

Harry

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

Campaign takes first steps forward

Uncategorized

Campaign’s initial acts

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

There’s lots of work to do on this.

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

Tying things together

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

Walking with Jane will play a significant role…

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

Working for impact

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

#cureNETcancernow

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

Building on the wave

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

Think about the impact…

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

Once and future campaign planning

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

…a new series of 15-30-second videos…

But that is a project for another day.

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

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

Campaign to Cure NET Cancer Press Release

Fundraising, Goals, Marketing NETs, Uncategorized

For Immediate Release

Dana-Farber announces campaign for little-known cancer

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

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

Photographs with captions:

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

 

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

Final Thanksgiving, final days

Fundraising, Grief, Jane, Treatments, Uncategorized

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

Thanksgiving Eve

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

…it has to be done.

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

Thanksgiving sunrise

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

The words were not comforting…

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

The best of times, the worst of times

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

…and we were happy.

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

Decision point

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

It haunts me to this day.

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

The dream–and the nightmare

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

…one more card to play…

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

Into the night

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

…things started to go to hell.

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

The final crisis

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

She did not sleep that night.

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

The hospitalist

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

An hour went by.

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

Keeping promises

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

‘There’s nothing left to try.’

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

Building the future

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

…I don’t think I did it very well.

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

May that day come soon.

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