Lives to live on the day of the dead

Uncategorized

Lives of the dead

Jane was recovering from the H1N1 flu seven years ago. We had never heard of NET cancer or carcinoid syndrome. That she would be dead in little more than a year was not something we even considered. We had lives to live.

…my challenge is to write something here every day about NET cancer…

Today is All Hallows. It is the day we remember our dead and honor our saints. Some believe the souls of the dead visit us today. If they are visiting me, they have been largely quiet so far. I had no haunting dreams last night. But the light in the entry was on this morning–and I could swear I turned it off last night.

Lives of the living

In my darker moments, I wish the H1N1 had carried Jane off in 2009. It might have been kinder. I wouldn’t know about NET cancer, wouldn’t know about carcinoid syndrome or carcinoid heart disease; I wouldn’t be reading scientific papers and trying to make sense of a disease that bewilders even our best scientists.

We had lives to live.

And this website would not exist–though many would argue it has vanished over the last several months. It has.

Saving lives through work

There are a number of reasons for that. In August of last year, I began working closely with a group at the Dana-Farber Cancer Institute to create 3-in-3: The Campaign to Cure NET Cancer. The goal of that campaign is to raise $3 million for NET cancer research over the next three years. As I write this, we are closing in on our first million dollars.

I wouldn’t know about NET cancer…

Part of that effort was the creation of the #cureNETcancernow Boston Marathon Jimmy Fund Walk group, the cancer specific group in the more than 25 year history of the Walk. The group raised over $155,000. Next year, we’ll work to expand that group and create something similar for the Pan Mass Challenge, a biking fundraiser for cancer that traverses the entire Commonwealth of Massachusetts over two days.

Lives change

We’ve also put together a NET cancer speaking program for business and civic groups that we will try to find audiences for in the coming months. I’ve prepared a prospecting letter for that which I hope will go out sometime this month. There are a number of other projects in the works as well.

…we are closing in on our first million dollars.

But the larger part of my absence here stems from two other, larger issues. The first was the gradual realization that I was no longer accomplishing much here that others were not doing better elsewhere. What I was writing about Jane’s experiences was from the dark ages of NET cancer care.

Life with NET

When Jane was diagnosed, we had two treatments for non-pancreatic NET cancer patients in the US: octreotide and it’s long-acting, slow release form that offered some patients relief from the daily injections. If you could get to Europe, PRRT was another potential option. But that was about it–and nothing seemed to help Jane very much.

…from the dark ages of NET cancer care.

The world of NET cancer is a very different place today–and I’m not sure how relevant Jane’s story is beyond putting things today in a historical context.

Life with grief

And how many times can people read about the ongoing grief of another before that becomes a pointless exercise? I’ve written a book’s worth of pieces on Jane’s death and my efforts to deal with what has followed. Those pieces, I know, have made a difference in helping me deal with that loss; and they have helped others similar straits–or so people tell me.

…nothing seemed to help Jane very much.

But I don’t know if those posts, too, lose their impact over time. The emotions I feel haven’t changed much in six years. I’m clearly in the throes of what the psychologists call “prolonged grief.” I know it is more common than most think because I know so many people who have lost spouses and not recovered beyond being able to get through the day despite the passage of several years.

Reclaiming past–and future–lives

So I’ve taken some time for me to see if I could find my way to better place in my head. I worked on some landscaping and interior decorating projects that would make the place I live more about me and who I am becoming than about us and who we were. I went back to some places we liked to go that had been mine before Jane and I met and I shared them with her. I tried to find some new spaces where I could discover who I am without her.

I’m clearly in the throes of what the psychologists call “extended grief.”

Each of these things has carried an emotional price–just as every piece I write carries an emotional price. I can’t take a photograph, write an article–even take a walk–without investing a part of my soul in it. Neither Jane nor I entered into our marriage on a whim. We both knew the cost of letting another soul that deeply into our lives. We were completely invested in each other.

Building new lives–here and elsewhere

I can’t describe the last several months. I’ve laughed, cried, cursed and struggled. I’m still not sure who I am or who I will be a year from now. But, for a variety of reasons, I’ve begun to feel something besides grief and anger, periodically. It is a bewildering experience.

Each of these things has carried an emotional price…

But I also know there is work to be done–here and elsewhere. Over the course of the next month–NET Cancer Awareness Month here in Massachusetts–my challenge is to write something here every day about NET cancer and the ongoing fight to find the cure that has so far eluded us.

Revising this site

I’ll also spend some time rethinking and reworking this website so it does a better job of doing what I wanted it to do from the beginning: provide help for NET  cancer patients and their caregivers–both in terms of information and in terms of emotional support.

…there is work to be done…

If you have thoughts on how to do those things, feel free to let me know.

A man lives many lives. One of mine is finding answers to NET cancer. But I have other lives to live, as well.
A man lives many lives. One of mine is finding answers to NET cancer. But I have other lives to live, as well.

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.

Simple truths I face–Part 3

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Grief

Simple beginnings

I met with Matt Kulke, Hillary Repucci and a NET cancer patient at the Dana-Fraber Cancer Institute on a muggy day in late August of last year. We’d gathered to talk, not about current research, but about the financial situation NET cancer researchers were facing not only at DFCI, but across the country as well. The topic was a simple enough one.

I will continue to write here…

The patient had an idea for a multi-year, multi-million dollar fundraising campaign that would reach out to regular businesses and others with deep pockets in ways we had not attempted in the past. We began working on an initial kick-off meeting and getting the approvals required from the upper levels we would need to proceed immediately thereafter.

The not-so-simple truth

By mid-October, we had settled on three years and $3 million for the campaign, which we launched on December 9–the fifth anniversary of the last day Jane was conscious. No one knew that until I brought it up in my opening remarks that night. They had suggested the date and I didn’t object because it seemed a symbolically fitting moment.

The topic was a simple enough one.

Since that night, we have raised over $600,000 for NET cancer research at DFCI’s Program for Neuroendocrine and Carcinoid Tumors, negotiated a first-of-its-kind Jimmy Fund Marathon Walk group in support of all the teams and Walkers walking specifically for NET cancer, held a summit for the captains of those teams, done an extensive photo shoot in the DFCI NET cancer lab, and worked on a  slide show and presentation we can take on the road to tell the Program’s NET cancer research story and why it matters that we hope to put the finishing touches on this week.

Simple realities

The simple truth is that all of those things have chewed up both time and emotional energy that normally would have gone into other NET cancer projects–like this website. I’ve slowly realized this spring that, much as I’d like to do everything, I can’t.

…a symbolically fitting moment.

Much as I’d like to spend all day every day working on NET cancer, I can’t do that either. It isn’t healthy–for me or anyone else.

Simple emotional needs

I need time to mourn. Nearly 66 months after Jane’s death I know that too much of this house looks like a shrine to the couple we were and the person she was. Last summer, I replaced all the furniture in the living room. I took down the photo collages of her I had hung on the walls after her death and began putting up artwork that is more reflective of the person I am now than the person I was then.

…much as I’d like to do everything, I can’t.

The result is I find myself living largely in that room. I use the kitchen, where I have made the second most changes, to cook in and to eat in. The only times I use the dining room are when I have large groups in for dinner or to work on a project. I sleep in the bedroom, but I had to move it before I could really sleep at all, and still have great reluctance about going in there. Our former bedroom has become a collection point for odds-and-ends I don’t know what to do with. Environment, it appears, really does matter.

Physical reality

I need time to exercise my body as much as my mind. I work on the landscaping around the house every day. I’m gradually transforming the yard into a bee, butterfly and bird sanctuary of gravel paths and flower and vegetable beds. I do everything there by hand–one shovelful, one wheelbarrow-full at a time. The transformation is painfully slow, but sometimes I find myself sitting in the midst of what is finished and discovering a peace I have not felt in over six years–the time before Jane fell ill. In truth, the sanctuary is as much mine as it is the birds’ and insects’.

I need time to mourn.

And I walk. I go for walks in the city through quiet neighborhoods and busy streets. I walk through local woods and fields and along the beach in the late afternoon. Part of it is I know the yard work alone won’t prepare me for the 26.2+ miles of the Jimmy Fund Walk on September 25–and that is a priority. But the walking gives me a chance to clear my head and explore the person I am becoming. It is a meditation that does more than anything else to remind me that I am a human being with needs that go beyond NET cancer or politics or the emotions of loss.

Simple truths emerge

The simple truth that emerges out of all of this–including Parts 1 & 2 of this series–is I need to rethink what is going on here and how best to address the ongoing needs of both patients and caregivers. I’ll need some time to do that but there are some things I can begin fairly quickly. The first of these is to clear out and update some of the sections I’ve ignored entirely over the last year. There are, I suspect, links that no longer go anywhere, for example; and the calendar is completely out of date at this point.

…one shovelful, one wheelbarrow-full at a time.

The simple truth is I need your input about what you need and want to see here. There are basic things– links to foundations, links to support groups, links to NET cancer programs–I know need to be here. But do the things I write here need to be supplemented with other kinds of topics than we currently provide? What do you need that you can’t get somewhere else? Are there other blogs we should be linking to?

The need for other voices

The simple truth is I need other voices beyond mine in this space. As I said in an earlier post in this series, my experiences with Jane during her illness and my own in the aftermath of her death are closing in on six years in the past. Yes, I’m still involved with patients, but not in the way I was with Jane. My role with doctors and researchers is also changing–and will continue to evolve as I move forward with what I am doing with the “3-in-3” campaign.

…some things I can begin fairly quickly.

The simple truth is we need more people to write about their experiences as lay caregivers, as doctors, as nurses, but most especially as patients. While there is great truth to the idea that if you’ve seen one case of NET cancer, you’ve seen one case of NET cancer, that doesn’t mean those patients and caregivers don’t have things to say that others facing this disease don’t need to hear–or won’t find useful.

A simple request

I will continue to write here, but I am also perfectly happy to serve as editor for those with things to say to this audience. Building and maintaining a blog or a website is not something everyone has the time or energy for. We have a good-sized audience here that is hungry not just for the latest research, but for the experiences of other patients and other caregivers.

…we need more people to write…

It’s time we made changes here to do that.

Attracting bees can be simple with the right flowers. Attracting donors is not always that easy.
Attracting bees can be simple with the right flowers. Attracting donors is not always that easy.

 

Simple truths I deal with–part 2

Death, Grief

Shattered clichés

Clichés stop us from thinking about the common truths they relate–for all that they represent simple truths. Everyone uses them so often that they begin to lose their meaning. And then some event shatters our complacency.

Sometimes the pain wells up and erupts…

Jane’s death underlined the simple truths that life is short and enormously unfair. She began to feel ill shortly after we submitted the paperwork that announced our retirement 18 months in advance of the actual fact, as required by the contract we worked under. In August, she was diagnosed with NET cancer. Four months later–almost to the day–she died, a little over six months before we would have taught our final classes.

Simple truths about teaching

If you’ve never been a teacher, you don’t know what it demands of you. People see only that the school day ends at 2:20 p.m. and that the school year is studded with weeks off and a long break over the summer months. The reality is 16-18 hour days seven days a week filled with preparation, grading, meetings, and time in the classroom–not to mention enormous amounts of figurative handholding with both students and parents. It is not a profession anyone stays in for long without a sense of calling.

Clichés stop us from thinking…

Jane and I spent our summers recharging our souls, but even summer meant reading the latest discoveries and techniques in our fields. We justified our single week in the mountains as time for us away from the books and articles we knew we had to read before school started again.

Unfair truths

Retirement would have shifted our priorities, given us the time to truly relax, read what we wanted to read, travel where we wanted to travel. Yes, we had books on teaching we wanted to write, but our own lives would be the thing we focussed on rather than other people’s children.

Jane and I spent our summers recharging our souls…

And then, all of that vanished in a hospital room at Brigham & Women’s Hospital. Even after they told us there was nothing more they could do, I half expected a miracle. We had worked together so long and so well that the breaking of that partnership was grotesquely unfair. I cannot describe the anger I hid below the surface the entire time Jane was sick. I cannot describe the anger I felt the next day–nor the anger I have yet every day since.

Truths no one sees

Someone told me during Jane’s time in the hospital that this was God’s way of getting our attention and refocusing us on a new task. Some would say now that the work I have done on raising awareness about NET cancer and donating and raising money for NET cancer research means the partnership has continued in a new and different way than we intended. Part of me even acknowledges all of that as true.

I cannot describe the anger I felt…

But it does not ease the anger or the hurt that I let virtually no one see. It leaks out around the edges, though. Sublimated anger emerges no matter how I try to control it. It is in the odd comment, the strange action. I rarely know I’ve done something until someone says something to me. I apologize, but people get hurt.

Unpleasant truths about me

The result is I find myself increasingly asocial, increasingly taciturn. My focus is on the business that I need to do. When I need a break, I work in the garden, play with the landscape, redesign a room, read something purely escapist, build something–all things I can do by myself. Real human interactions are dangerous–and I increasingly avoid them where I can.

…people get hurt.

I’m fine in situations I can script in advance in my head. If we sponsor a dinner, I can make the rounds of the tables, give the necessary speeches. When I thank people for their donations or their work, I truly mean it. But I don’t trust myself much beyond that. Social spontaneity is dangerous.

Platitudes and truths

And then something happens and I have no choice. I know exactly how useless the canned platitudes are when one has lost a loved one. I know exactly how useless platitudes and the well-worn phrases of sympathy are when someone is diagnosed with cancer or some other potentially fatal illness or injury–or someone they love is.

…I find myself increasingly asocial…

The last few months have been particularly difficult. I’ve lost track of the number of funerals and wakes I’ve been to–lost track of how many people I have hugged and spoken to who wander their houses like an errant pinball bouncing from one memory to the next and not knowing where the hours have gone nor how they are sitting in the room they are sitting in.

Unfair truths redux

Four weeks ago, I had lunch with an old friend. He complained about not remembering former students names when he meets them these days. Like me, he has had literally thousands of students, so I told him not to worry about it.

And then something happens…

A week later, he couldn’t tell time, couldn’t tell the difference between his phone and his TV remote. Next week, he will start radiation and chemo treatments for tumors in his brain. I don’t know a better human being than he is. He takes care of the sick–and now he needs to be cared for. I’ll do what I can for him–we all will. We’ll make sure he gets to his appointments, make sure he has the social visits he needs and that the emotional support is constant.

Angry truths

I’m angry. I’m angry about the woman who lost her daughter and her husband within two weeks. I’m angry about my friend’s brain tumors, I’m angry about the daily struggles I see every day among NET cancer patients to get the treatments they need and the care they deserve, I’m angry about the friend I lost to breast cancer, angry about the people who walked away from her.

I don’t know a better human being than he is.

And, sixty-five months and nine days after Jane’s death, I am still insanely angry about that. There is no logical reason for me to be angry with her, but some days–when I am honest with myself–I am absolutely livid. She promised me she was not going to die–and then she did. I think about all the times I told her she needed to see a doctor–and she didn’t. I think about how I listened to her when she told me to go see one–and how she wouldn’t listen to me about her own health.

Telling truths

I wonder if she had seen the right doctor twenty years–or even ten years–ago if she would be alive today–if we would be planning a trip somewhere or working on a book together. The emptiness eats at me and makes me stupid with grief and anger at her, at God, at the world of people who taunt me with their happiness without knowing they are doing it.

I am absolutely livid.

And then the strange combination of compassion and logic pull me up short. Jane didn’t want to die–she had no choice in the matter. She wanted to be here with me every bit as much as I wanted her to be. She suffered for years with a disease we could do nothing significant about even had we known what it was.

Truths we don’t always see

I cannot see the private griefs those happy faces hold behind them–any better than they can see the pain behind the face I present to the world. To look at me on any given day, no one would know how deeply wounded I still am–and, I suspect, always will be. I put on a face for the world every day the same way Jane and I put on a face for our students that kept our personal issues out of our work and out of their lives.

 Jane didn’t want to die…

The simple truths are these: I am always hurting and always angry. It is the nature of grief. We tell ourselves fairy tales about the first year and about getting over it because otherwise the enormity of the emotions would overwhelm us and leave us incapable of functioning. Every event in our lives shapes us and our future. To an extent, we can attempt to craft what follows–try to create a more positive future for ourselves and others.

Forgive me

But there are limits. Sometimes the pain wells up and erupts with as little care as Vesuvius or Mt. St. Helen’s for the people living in close proximity. On those days, I hate myself no matter how irrational that may seem. Like a good doctor, my first commandment is, “Do no harm.” But I am human–and I fail.

 I am always hurting and always angry.

Forgive me. Some days I really don’t know what I am saying–let alone doing.

One of my simple truths is I build things to help me work off my anger. Landscaping somehow eases my pain.
One of my simple truths is I build things to help me work off my anger. Landscaping somehow eases my pain.

Simple truths I face–Part 1

awareness, Goals

Simple truths at the beginning

Regular readers of this blog, regular users of this site, will have noticed I have written nothing, changed and updated nothing, here since March 10. I have faced some bitter and simple truths in the intervening time that have caused me to rethink what I am doing here and elsewhere.

These are all simple truths.

When I began doing this in the fall of 2011, the landscape of NET cancer was very different than it is now. There were few patients sharing their experiences. Those who were, shared them on their personal blogs. The major foundations were supplying what little scientific information was coming out but did little–it seemed to me–to tell patient stories.

Simple truths of what was

Much of the writing on the science was not very lay-person friendly, either. The language was dense “doctorese” and often difficult to follow.

I have faced some bitter and simple truths…

There were no lay-caregiver stories. Husbands and wives of NET cancer patients were too busy taking care of their loved-ones to be writing about what they were experiencing. And if that loved-one died, writing about what the experience of care-giving was like took the writer back into an experience that was emotionally very difficult in a time when children and parents also demanded care-giving attention.

Simple truths of support

Then, in very short order, two of the best, and most widely read, patient writers died. I tried to fill that gap as best I could by telling Jane’s story in–at times–excruciating detail.

There were no lay-caregiver stories.

Finally, there was the problem of emotional support for patients. While there were several regional groups holding face-to-face meetings, large numbers of patients really were on their own. It seemed to me one solution to that was an online place patients could talk with each other about what they were experiencing–and where caregivers could do likewise.

Learning new simple truths

I set out to try to offer solutions to each of these problems on this website, while equally working to try to solve the funding problem for NET cancer research–a problem that very much remains, despite good news on several fronts over the last year.

I tried to fill that gap…

My effort to create an online support group crashed and burned almost immediately. We collected infinitely more spam than patients. Privacy was a major concern I had no way to address. Fortunately, others had similar ideas and created private Facebook groups that do a better job than I could have even if everything on this site had worked perfectly.

More difficult simple truths

My patient and caregiver experience threads were based on what Jane and I had experienced over the course of our life together. Over the last nearly five years, I’ve recounted as much of what she experienced as a patient as well as I could. But I have never been a patient and I worried constantly about whether what I was relating was true–or merely my version of the truth. Many patients have said my words have the ring of truth to them over the years, but as treatments evolve, experiences have begun to change.

We collected infinitely more spam than patients.

In addition, we now have a new group of patient writers who articulate their experience far better than I can. They reach a broader audience today, as well–one of them has attracted more readers in the last 18 months than this website has attracted in almost five years.

Missing simple truths

Other websites regularly chronicle the stories of other patients. The patient story is being told more and more broadly and frequently in the mainstream media, as well. That piece of the NET cancer story is being far better told than it was when I started this–though there is still a distance to go.

…experiences have begun to change.

The caregiver story, though, still needs greater attention than it gets. I’ve told my story in many different venues but, like Jane’s story, I’m not sure how valid parts of it are anymore because it lies in an increasingly foggy past. While pieces of my experience remain vivid–down to the exact words and facial expressions–I worry how much of the story I’ve romanticized at this point in my own mind.

Changing simple truths

While the science has changed the patient experience, I’m not sure what the caregiver goes through emotionally has changed very much. One of our closest friends has been diagnosed recently with a life-threatening disease–not NET cancer–and I find our small circle of close friends experiencing many of the same issues I did during Jane’s last days as we try to help him deal with what he is facing–and what we are facing. It has certainly brought back many of the emotions I felt in the wake of Jane’s diagnosis–and reopened many of the wounds I wanted to think were well on their way to healing.

…I worry how much of the story I’ve romanticized…

Still, I am not sure how much more I have to bring to narrating the caregiver experience. Does another piece of writing recounting the day Jane was diagnosed really help anyone better understand what that is like than the other four pieces I’ve already written on it? Will reliving the last day of her life and committing those thoughts to paper, again, be of use to anyone?

Simple truths of healing

I don’t know. What I do know is how hard it is to heal when one is constantly exploring and probing that wound in search of understanding for myself and others. And yet, I also know caregivers need to know they are not entirely alone in what they are feeling and thinking. A fifteen minute conversation with another caregiver made a huge difference in helping me deal with some of what I was going through that I could not talk about with anyone else when Jane was in the hospital.

…science has changed the patient experience…

As a community, we still do a less than great job popularizing the science side of things. We need more and better science writers who can take the complex issues of NET cancer research and put them into laymen’s terms. It is a difficult, but very necessary job–and one I will try to continue to attempt both here and elsewhere.

Unchanged and changed simple truths

The flip side of that is there is still not enough science going on. Last week, I was at the NET-RF conference in Boston. One of the speakers pointed out that nearly every NET cancer researcher in the US–and a substantial number of European researchers–was in the room. It was not a very big crowd.

…caregivers need to know they are not entirely alone…

The good news was not all of them had hair as gray as mine. There are a number of good young researchers taking on this cancer–as well as the household names we all know and love. I am marginally less concerned than I once was about who was going to take over as the prime movers in the field aged and retired.

Difficult simple truths

And then there is the money and resources problem. Despite the influx of nearly $8 million of new money for research this year, the amount of money available  still does not amount to a rounding error on the $660 million the US government alone spends on breast cancer research. Assuming we raise roughly what we raised nationally last year in addition to the new money, we will have about $15 million to work with. But for all that seems a princely sum after years of poverty and neglect, we are far from having enough to do all we need to do.

It was not a very big crowd.

The number of NET cancer centers remains too small, as well. We are now diagnosing about 16,000 new NET cancer patients a year in the US. Researchers now believe there at least 200,000 undiagnosed patients living in this country–to go along with the 110-120,000 diagnosed patients.

Simple truths for the future

Too many of those patients do not have easy access to NET cancer specialists–and that problem is likely to continue to grow. The need for Walking with Jane, then, still exists, though perhaps not in precisely its current form.

…we are far from having enough…

These are all simple truths. But there are other simple truths that shape my reality. Some have to do with NET cancer. Others have to do with the other pieces of my life. Each of those simple truths have an influence on what happens here next.

I’ll look at those simple truths and their impact in my next post–a post I hope to write sooner than two months from now.

Jane's death has cast a shadow on my life words cannot describe. It is a simple truth--but there are other simple truths.
Jane’s death has cast a shadow on my life words cannot describe. It is a simple truth–but there are other simple truths.

 

 

Form 990 Hell and the numbers it creates

Boston Marathon Jimmy Fund Walk, Fundraising, Goals

Fighting through Form 990

I’ve spent much of the last few weeks girding myself for the particular place in Hell reserved for those of us foolish enough to run non-profits that don’t raise enough money for hiring an accountant to take on Form 990 to make sense. Yesterday, having collected all the paperwork, I took on the eight-hour task of explaining to the state and federal governments exactly what we did last year on the forms of their choosing.

I do what I can with what I have…

I don’t like numbers. I’m one of those people who, even with a calculator, can’t add up a column of figures and get the same sum twice in a row. I have to triple check everything. Even then, I find mistakes. At one point yesterday, I had a $205 mistake–somewhere. Then I realized that while I had put what we paid the Commonwealth on the form, I’d forgotten to add that figure to the final expenditures at the bottom of the column.

Digesting Form 990

In the end, everything balanced to the penny. There are still signatures to get and checks to write–and I’ll check the math one more time before I pack everything into the envelopes and send them off. At some point in the next few weeks, I’ll post the forms here, as well. It’s what’s called transparency–which means, “I think you have a right to know–and be able to find easily, if you want that knowledge–what comes in and what goes out.

I don’t like numbers.

But I’ve had to read through more than a few state and federal forms–and to be honest, they are not designed to be lay-people-friendly. At least, that’s my opinion. I understand why the forms are set up as they are. If you have hundreds to review, it’s nice to have a standard form where you don’t have to think after a while about what this line is about because you’ve read it so often you just know what that figure represents.

Why I summarize Form 990 here

It’s like a multiple choice or fill-in-the-blank test: eventually, the review becomes pretty simple. And for an accountant with hundreds of these to fill out, the forms make that job simple, as well.

…everything balanced to the penny.

You, however, probably are not going to review enough of those forms to get to the speed where that works for you. So I am going to reduce what is on the twenty-odd pages of forms to a simple narrative that hits the highlights.

Form 990: dollars and cents

While 2015 was not as good a year for fundraising as I’d hoped, it was still the best year we’ve had in our four-year history. Last year, we raised $23,793.88. That brings our four-year total to $75,431, in round numbers, more than two-thirds of it from small donors.

…a simple narrative that hits the highlights.

We made donations of $23,366 last year. The lion’s share, $12,608, made its way to the Walking with Jane Dybowski Fund for Neuroendocrine and Carcinoid Cancer at the Dana-Farber Cancer Institute through the Boston Marathon Jimmy Fund Walk. That money generated another $7500 in matching funds that went directly to my Walk from an anonymous donor. In total, that DFCI fund took in about $77,000 last year for NET cancer research.

Form 990: More charitable expenses

The second biggest chunk of the money we raised last year went to the American Cancer Society through the Relay for Life of Greater Fall River. That $6258 went to unrestricted funds at ACS for general cancer research and patient support services. We don’t get to restrict how that money is spent. Our team took in about $1300 more than is reported on Form 990 because the money was donated to our ACS team website rather than the non-profit and never passed through our hands.

…we raised $23,793.88.

The final charitable expenditure was $4500 for the Walking with Jane Scholars program at Westport High School. After Jane’s death, I set up a scholarship in her memory at the school we both taught at for graduating seniors planning to enter the medical or science education fields. It is a four-year scholarship. I, personally, make a donation to Walking with Jane each year to cover the cost of those scholarships. I do add that to my charitable deductions.

Form 990: Where your money didn’t go

We spent $205 on bringing us up-to-date with the state in terms of the fees they charge to register and supervise non-profits. I picked up the tab for those personally, though I had to put the money in the Walking with Jane account first, since the state requires the fees be paid on a corporate check.

We made donations of $23,366…

You’ll notice we pay nothing in terms of salaries, travel expenses and the like. All the work is done by volunteers. If I want to go to a conference, I pay for it. If we need envelopes or stamps or pamphlets or stationary, that’s on my dime as well. I don’t take those things off on my personal taxes.

My bottom line

I want whatever you donate to go into research and helping patients, not into routine expenses, state fees, travel, salaries or consulting fees.

…that’s on my dime…

Next year, we will be cutting back on what we do for the American Cancer Society. We’ve decided to sharpen our focus even more on NET cancer–and since ACS will not allow us to focus what we raise in that way, we will move our efforts more toward those who do.

Defining our role

It’s not that other cancers don’t matter–they do. I’ve lost too many friends to too many forms of cancer not to be concerned about the larger issue as well. But we don’t raise enough money to have a real impact on more than one cancer–and, honestly, we don’t raise enough to have a substantial enough impact on NET cancer to suit me. That would take millions–perhaps tens of millions.

I want whatever you donate to go into research…

Unfortunately, I am not wealthy. Unfortunately, I don’t know very many people who are. I do what I can with what I have–and hope that inspires others to do likewise.

This is the face of a man who, in writing this piece, discovered another math error on Form 990 he has to to go fix. Have I mentioned how much I hate working with numbers recently?
This is the face of a man who, in writing this piece, discovered a transcription error on Form 990 he has to to go fix. Have I mentioned how much I hate working with numbers recently?

First NET Cancer Walk Team Summit

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

The NET Cancer Team Summit–An overview

The captains of three of the major Jimmy Fund Walk NET cancer teams held a summit in Newton yesterday morning about ways to support each other’s efforts and to discuss plans for the time between now and the Walk. It was the first of three meetings I had on NET cancer fundraising efforts yesterday. The three teams represented were NETwalkers Alliance, Shuffle for Dana-Farber, and the Zebra Divas. (I can’t post links to the other two teams as they do not yet have their pages up.)

We did not, ourselves, call the meeting a summit at the time. It was a phrase that occurred to me as I headed into Boston for the other two meetings. It certainly was that. Together, those three teams raised close to $130,000 last year and fielded over 130 walkers. Each group has significant plans for the year ahead with the potential to double both of those numbers–or more.

What I sent this morning

What follows is an edited version of what I sent my fellow captains this morning. It does not discuss the details of the meeting–I didn’t take the kinds of notes that would require because part of my role was to carry some questions to the people at Dana-Farber Cancer Institute about how best to facilitate that growth. Rather, it answers the questions raised at that meeting that I took forward into the other meetings–and underlines the role I see myself filling in this newly constructed group of teams with similar interests–given my role in 3-in-3: The Campaign to Cure NET Cancer—as well as captaining our NETwalkers Alliance team–and the  Jimmy Fund Walk teams’ role in that effort.

I hope, first, that those of you who are considering taking part in the Boston Marathon Jimmy Fund Walk will consider either joining one of these teams or forming your own team to join our group. If you have a team that is already centered on NET cancer, we would love to have you join us, as well. Second, those of you who have NET cancer programs in other parts of the country may find in the results of this summit a useful model for your own fundraising efforts.

Some final notes

The bottom line is, we can only climb the summit of curing NET cancer by working together to support each other’s efforts. That is true in the laboratory as well as in fundraising and raising awareness.

My edits have expanded some items to provide background information that was clear to those in attendance but won’t be to those who were not present; and I have eliminated some items and pieces that were internal bookkeeping or extraneous to the central issue of the Walk.

Reporting what I found

Dear friends,
First and foremost, thank you all for meeting with me yesterday. I came away with a number of good ideas and some recharged batteries. I hope all of you did as well.
I won’t recap everything here that we talked about yesterday. People took good notes of their own. My purpose in writing, beyond thanking you, is two-fold: first to answer the questions that were raised yesterday that my later meetings provided answers to; and second, to underline my availability for whatever you need me to do.
Let me deal with the questions first.
  1. We discussed creating a #cureNETcancernow group to which each of our individual teams would belong and whose funds would all go to the Program in Neuroendocrine and Carcinoid Tumors at DFCI. This would help us avoid the losses that always seem to come when a team changes its name and eliminate the rebranding efforts required by those moves. Zack Blackburn, the head of the Walk and I met late yesterday afternoon. He sees no problem with what we propose doing. He will set up the group and put the team names and links under that group–as well as on the individual list of teams. All money raised by teams affiliated with that group will go to the NET cancer program. Each team will still have to fill out the one-page declaration and set a $10,000 goal, but that $10,000 will be a soft goal for our purposes, since the group as a whole will clearly raise more than enough to cover any team that falls a bit short.
  2. Our NETwalkers Alliance team was a three star Pacesetter. As such, we are entitled to a free business card printing branded by the Walk that can be placed in various places as a recruiting device. I’ve asked Zack to use our NETwalkers Alliance cards for the #cureNETcancernow group and to include links for all three of the teams currently in that group on those cards.
  3. Zack and I talked at length about ways to do outreach for other NET teams and individuals. There is no way to cross reference patient and Walker lists because of confidentiality issues. However, Zack suggested they could do a survey to ask why people are walking and either suggest at the time teams that exist in these areas or do a follow-up note making people aware of those teams/groups. This would help them link up individual walkers with teams in their area of interest, helping all teams, not just our teams.
  4. The Walk team has assigned someone to work on the overall recruiting issue. I’ve volunteered to work with her on presentations to researchers and doctors in the Program, as well as to people in the support group—and anyone else she needs me to talk to.
  5. The minimum amount to encumber funds is generally $10,000. As I have noted above, for teams affiliated with our group, that will be a soft number.
  6. I will underline here that the only time I am not available to be at your events is when I am running one of our own.
I do want to underline a couple of things I said yesterday about how I see my role in all this.
  1. From the Walk standpoint, my job is to help everyone, on every NET cancer team—and anyone else walking for NET cancer. That means helping with recruiting—whether that means writing letters, designing posters, working on websites and Walk Pages, giving speeches or talking with people one-on-one or in small groups. It means helping people to develop fundraisers and find knowledge support when I don’t know how to do something myself. And it means attending and supporting whatever events get put on whenever I can. With that in mind, I will make the details of everything my own team is involved with as well as my individual efforts available to everyone.
  2. My plan is to try to meet with every team and every NET cancer walker at the start points, the finish line and/or at after-party events. We may need to figure out how to get me back to Hopkinton afterward, but we’ll cross that bridge when we come to it.
  3. I will help communicate the group needs to the Walk and the Program folks. But I don’t want to supplant your efforts with them. Rather, I want to amplify and support what it is we are trying to do and facilitate rapid communication on issues of concern.
  4. I want this disease dead, and I will do whatever is necessary—short of selling my soul—to make that happen.
If I’ve missed anything I said I’d get back to you about, let me know. And if you’ve thought of other things in the meantime, let me know those, too.
Would there be value in another meeting at some point between now and the Walk? I certainly think a meeting shortly after the Walk—though not that day–would be useful to talk about things that worked, things that didn’t and what we want to do in 2017.
Again, thank you all for your efforts.
Pax et lux,
Harry
What started with a simple idea and a logo keeps growing. Yesterdays's summit was the latest in what seems an infinite number of steps in my personal quest to kill NET cancer.
What started with a simple idea and a logo keeps growing. Yesterdays’s summit was the latest in what seems an infinite number of steps in my personal quest to kill NET cancer.

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.

 

DFCI’s NET cancer difference-makers

Boston Marathon Jimmy Fund Walk, Fundraising, NETwalkers Alliance

A surprising day

Someone posted on one of the NET cancer support groups yesterday that they had been doing some research and were amazed at how much of what exists is connected to the doctors at the Dana-Farber Cancer Institute in Boston.

…I’ll log hundreds of miles in training.

I work with some people at DFCI pretty closely. I do a lot of fundraising work for them and have put together a couple of pamphlets with their help. But even I was not entirely aware of how much influence DFCI has on cancer research in general, above and beyond NET cancer.

The DFCI difference

I spent most of today at the annual Jimmy Fund Extra Mile Brunch. It reminded me of how important what we are doing with the Marathon Walk and with DFCI’s Program in Neuroendocrine and Carcinoid Tumors is. I was with Ed Benz, DFCI’s president, for an hour before the brunch–one of the perks of being a 5-star Pacesetter. I managed to combine something he said with something else that was said for a mind-blowing factoid.

I work with some people at DFCI pretty closely.

Only 14 new cancer drugs were approved by the FDA last year. DFCI had a major hand in five of them. Think about that. That’s more than one-third of all the new cancer drugs made available last year that DFCI played an important role in bringing to patients everywhere.

NET cancer research and DFCI

Think about this: The FDA just approved Afinitor (Everolimus) for use in lung and gastrointestinal NETs. DFCI played a major role in its development. will likely be approved within the next six months or so–the only completely new NET cancer drug likely to get approval this year; DFCI was the key player in that process. In fact, there is only one new treatment for NET that is likely to get approval this year DFCI was not a key player in–and patients could get access to that trial through DFCI because it was a satellite center for the PRRT trial.

…more than one-third of all the new cancer drugs…

Afinitor, as well as Sunitinib, were already approved in 2011 for pancreatic NET–again with DFCI in a key role.

The human quality

Much of the new basic science on NET cancer is also coming out of DFCI.

Think about this…

But I don’t do the Marathon Walk–or any of the other fundraising activities I undertake on their behalf–based solely on the research they produce. I do it because of the humanity of the people doing that research and the human qualities of the doctors, nurses and support staff engaged in treating NET cancer patients. They are among the kindest and most compassionate people I have met in my life. None of them is trying to win awards for their research. The only reward any of them seem truly interested in is the one that comes from what they do for and with patients.

The gold standard

My gold standard for doctors grows out of Jen Chan, who was Jane’s oncologist. Never mind her patience in helping us understand Jane’s cancer; never mind her call to us shortly after we got home after Jane’s first appointment to talk about options she had come up with since that morning; never mind her willingness to give up a free Saturday afternoon to come to the hospital to talk to me about our options when Jane went into her second coma; how many doctors would put the turkey in the oven on Thanksgiving morning and then leave it and her children in the charge of her husband to come see Jane that morning, not as her doctor, but as her friend?

None of them is trying to win awards…

I have rarely seen that in most of the doctors I’ve dealt with over my life–and especially not very often among the very best at what they do. The people at DFCI do both. And I love them for it.

My DFCI mystery

Outside of New England, no one seems to have heard of the NET cancer doctors at DFCI or the Program they have created. When I read the recommendations of patients from outside the region, I rarely see Dana-Farber, let alone  Matt Kulke or Jen Chan, mentioned. And that’s sad. What goes on there is extraordinary.

And I love them for it.

And why shouldn’t it be? Nationally, the Dana-Farber Cancer Institute ranks third overall for cancer treatment–trailing only Sloan-Kettering and MD Anderson. You don’t get that kind of recognition without excellence in every aspect of what you do.

Walking the Walk

In 225 days, I’ll walk 26.2 miles to support the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Between now and then I’ll log hundreds of miles in training. I’ll spend hundreds of hours working both alone and with the other members of our team to raise money for the Walk; I’ll spend similar hours trying to help others get their own fundraising projects off the ground; and I’ll drive hundreds of miles to support their efforts. I’ve done it before–and I see no reason not to do it again this year–and next year, and the year after that, and the year after that…

What goes on there is extraordinary.

There are lives at stake–and what the doctors at DFCI do makes a difference. Come and help us make a difference.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.