Category Archives: Uncategorized

Ring on my finger

Death, Grief, Jane, Uncategorized

I walked off a cliff yesterday

Jane didn’t want to be buried with her wedding or engagement rings. She insisted I take them off when she died. And I did that. I told her that when she died, I would move my own wedding ring from my left hand to my right after I took her wedding ring off her finger. I didn’t do that–until yesterday, the 52 month anniversary of her death.

Jane put it on my finger…

I’ve felt that moment coming for a few months now. In February, I listened to a story on the radio in which a woman talked about the decision to take off her wedding ring after her husband’s death. Like me, she had not done it immediately. But, eventually, she realized she was no longer the person she had been–and that her ring no longer defined or even symbolized who she was. It was time.

Ring of denial

The day Jane died I fully intended to move my ring to my right hand. But I got caught up in the notifications and the paperwork–and besides, I told myself, the ring was too small to fit on my right hand; it would need to be resized first. The truth, of course, was I was not ready to stop being married–I was not ready to be a widower.

She insisted I take them off when she died.

So the ring stayed where it was for the wake and the funeral–I would make the switch at the cemetery when we left the grave. It didn’t happen then either–there had been no time to get the ring resized. At least that is what I told myself. The fact I wore Jane’s wedding ring and engagement ring on a chain around my neck for the next several months tells the emotional state I was in and why my own ring stayed right where it was.

Ring of discovery

The only reason I stopped wearing her rings was I was terrified I would break them. Every time I picked up something heavy it crushed the rings into my chest. They live in my safe deposit box now. I know no one will ever wear them again while I am alive. My executor will have to figure out what to do with them–and the rest of Jane’s jewelry.

…it would need to be resized first.

I thought about taking the ring off on our anniversary, on Jane’s birthday, on the first anniversary of her death. On the third anniversary of her death, I even went so far as to talk with a jeweler about how long it would take to get the ring resized. Periodically, I would wear the ring on my right pinky, where it fit loosely, just to see if I could bear it. Then it fell off in the back of the car when I was putting some plants in. I thought I had lost it–and realized how unprepared I was for that.

The power of numbers

September 2 of last year was our 25th anniversary–the anniversary Jane had always joked we would never get to unless we counted in dog years. I thought, briefly, about making the switch then. But even the month leading up to that date told me what an emotional tsunami the actual day would be. I took a single-serve bottle of champagne to her grave that day. I drank half and poured the rest above where her casket is buried.

 I thought I had lost it…

Fifty-two is an important number for me for many reasons. It is the number of months between death and rebirth in my religious practice. It is the day of the last readings for the dead because on that day one leaves the garden to become a child again in the physical world.

Preparations

An earthly marriage may survive death, but it should not survive rebirth. That thought came to me on Monday when I woke up. Perhaps I dreamed it. Perhaps Jane said it to my soul in the night. But I knew wherever it came from, it was true. It made this week, which I already knew was going to be hard, much harder.

I drank half and poured the rest above where her casket is buried.

On Thursday, I took my ring to the jeweler and left it there. That afternoon, they called me to say my ring was ready. It slid on easily but did not want to come off. I knew then it was the right decision. Eventually, I got it back on my left hand for one final day.

Rebirth Day

Friday was a dismal day of rain and fog and raw cold. I collected three stones from the yard, placed them in the car with the books for the final readings, my walking stick and my prayer shawl. I picked up the flowers I place on her grave each month. I drove to the cemetery.

I took my ring to the jeweler…

In the slow drizzle, I rearranged the Easter flowers, put the new flowers in the cemetery vase I had brought with me, and placed the stones. I donned my shawl and placed my walking stick against the gravestone. I did the formal readings. The pages curled in the dampness.

Ring moment

I set the books aside. I moved my ring from my left ring-finger to my right ring-finger. The drizzle diminished to a mist. I talked with Jane for a few minutes, then left three kisses on the stone above her grave with four “I love you”s.

Friday was a dismal day of rain and fog and raw cold.

As I turned to leave, a sudden wind came up and slid the shawl gently from my shoulders as Jane said good-bye. I laughed then. It was so like Jane. She always lightened even the most solemn or difficult moments.

Aftermath

I came home. I worked on some Walking with Jane things, did some reading, watched Gene Wilder and Richard Pryor in Silver Streak. My left hand feels funny where my wedding ring lived for 25 years, seven months and eight days. My right hand feels funny because of the unaccustomed weight of that ring. Both hands look funny.

I laughed then.

Until yesterday, I was still a husband, for all that Jane was 52 months dead. Today, I am a widower–and the world feels different.

Everyone is different

This is not to say that taking off a wedding ring is a magical act that immediately alleviates grief and ends all the emotional difficulties that go with the death of a loved one. I’ve had to stop several times in writing this because I could no longer see the keyboard or the screen through the tears. I’ve had to stop other times because the emotions became too strong for words.

…yesterday, I was still a husband.

I know several people who have worn their wedding rings far longer than I have and have accepted their widowhood in ways I still haven’t. For me, this morning, I see my refusal to move my ring as the symbolic denial of Jane’s death that it was. But my life is defined by symbols. I imbue things with symbolic power far beyond human norms. Not everyone does that.

Emotions and me

For most people, I think, a ring is a ring and a grave is a grave. For me, Jane’s grave is an anchor for my grief. That anchor allows me to function more or less normally in the outside world. When grief threatens to overwhelm me, I can go there in my mind. And when I stand there I can let myself feel the torrent of its soul-shattering force without being shattered by it. Like the Japanese characters in Shogun, Jane’s grave became, for a time, a box I could place my grief in when a situation demanded my focussed attention.

…my life is defined by symbols.

I don’t deal well with strong emotions, either in myself or others. But I am a very emotional person. I can either find a way to control the release of my emotions or give them full sway and let them destroy me and everyone and everything around me. The result is that I can come across, on first encounter, as cold and distant–almost heartless. Eventually, people begin to understand that cool logic is a coping strategy that makes it possible for me to function.

The power of symbols

I surround myself with symbols. In fact, nothing that remains in my life, other than people, escapes evolution into some kind of archetypal symbol with its own purpose. A hat and coat are more than mere protections against sun or cold. My dress coat, for example, is a representation of Jane and my grandfather, both of whom protected me from cold far worse than any winter wind can conjure. When I put it on, I feel their arms embracing me with a different kind of warmth.

…that cool logic is a coping strategy…

Each plant, each wreath, has a story and a meaning. Its placement in the room or on the door has a purpose that goes beyond the decorative. Giving away even the least used of Jane’s clothes was difficult because each was a part of her story–and of our story together.

A circle of gold

But a blouse, a plant, a piece of furniture, is not a wedding ring. Over the course of our marriage, my wedding ring never left the finger Jane put it on. Until the morning of her heart surgery, when she had to take it off against the possibility of her hand swelling, Jane’s had never left her finger either. She insisted no one but me would ever take it off–and that morning, I did.

Each plant, each wreath, has a story and a meaning.

My ring is a simple circle of gold. There is nothing physically fancy or remarkable about it. But Jane put it on my finger, just as I had put hers on her finger. Only she should have taken it off my finger. In her absence, it took me 52 months to figure out how and when and why to do so.

If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for for 25 years, seven months and eight days.
If every plant and piece of furniture has both a physical and symbolic purpose, imagine the symbolic power of a simple gold ring worn on the same hand for 25 years, seven months and eight days.

Impossible? At 51 months, nothing is

Goals, Grief, Jane, Marketing NETs, Uncategorized

Fever dreams

I had a 101.2F fever ten days ago, on the 51 month anniversary of Jane’s death. For the first time, I was not physically at her grave on the tenth of the month. The flu saw to ending that streak in a way no amount of rain or snow or heat or cold had succeeded in doing.

…we need to work more effectively together.

There is a line in The Who’s Tommy about sickness taking “the mind where minds don’t usually go.” My mind took that journey as fevered day turned into fevered night and fevered day for the better part of a week. I’m not sure what I learned from that reminder of mortality, only that something feels different.

The empty grave

I went to the cemetery Saturday, the first day my fever went below normal for a good portion of the day. It was rainy and raw and I gave myself a small relapse that night as a result, for all that I only stayed long enough to walk from the car to Jane’s stone, leave three kisses there, and walk back to the car. For the first time, the gesture seemed empty and almost silly.

…something feels different.

I had no sense of her presence there for the first time since she died. It felt as though her soul had moved on. Maybe it has. Maybe it is time I started thinking about my life without Jane as something beyond this endless war against NET cancer. Not for the first time did I remember that this is not the life she wanted for me. But it was the first time I thought, “maybe she’s right.”

Mourning and killing

For 51 months I have focussed on just two things: mourning Jane and killing NET cancer. Oh, I’ve redone some rooms and worked on expanding some garden beds; I’ve sorted through Jane’s clothes and possessions and sent them on to others where they could do some good; I’ve travelled to Seattle to visit family; but each of those things has been about mourning and dealing with loss.

…the gesture seemed empty and almost silly.

I’ve done some social things as well. But all of those have either been centered on NET cancer or served as a reminder that Jane is not here and that I am truly alone without her, no matter how many people are around me–and no matter how much they are focussed on me and trying to get me to feel better–to forget, even for a little while, the treasure I have lost.

The first burden

A grief counselor suggested recently that I take too much responsibility on myself–that somehow I make myself responsible for all the ills in the world–and for solving those ills. She’s right. Every time someone dies of NET cancer, I feel responsible for that death. “If only you’d worked a little harder, they wouldn’t be dead–we’d have a cure,” the little voice that imitates Jiminy Cricket mutters in my ear.

…I am truly alone without her…

The rational me knows better, of course. I know precisely how that sense of responsibility was born back when I was a child. It is the burden every eldest child carries–especially those from large families. When a younger sibling did something wrong, even if we were not physically present, it was somehow our fault. We were supposed to set the example–and when they failed it was because the example we set was not good enough.

The second burden

My parents added another layer of responsibility to that. Periodically, my brothers and I would be set some task–cleaning the cellar, mowing the lawn, something long and involved. I would do what seemed my fair share of the job–whatever it was–more quickly than whomever I was working with. But if I stopped there to let them do their share, I was told, in no uncertain terms, that I was to work until the job was finished–even if it meant doing more than the others.

…the little voice that imitates Jiminy Cricket mutters in my ear.

I grew up with the idea, then, that I was responsible for everything–no matter when I started and no matter how much of the job I actually did. I grew up with the idea that I was responsible for everything that happened both in my life and in the lives of everyone around me.

The responsible and the impossible

The result is, I set impossible standards for myself and ridiculous goals for anything I put my hand to. There is no such thing as “good enough.” Anything less than the highest standard I can reach is unacceptable.

…I was to work until the job was finished…

That I have rarely failed to reach whatever goals I have set–no matter how insane they appeared to people in the outside world–has reinforced the idea that nothing is impossible if I can put my mind to it and recruit enough of the right people to make it happen. Arguably, Jane’s death was the first time I had not found a way to outfox what any sane person would see as a no-win scenario. In some respects, the work I have done since on NET cancer could be seen as an effort to correct that failure.

Facing the impossible reality

But I have set myself a seemingly impossible task, especially in the way I have approached it. Just keeping up with the research on NET cancer is a significant time and energy commitment. Translating that new information into laymen’s terms requires another not insignificant amount of time and energy. Getting that information out to people who need it through this website, social media and podcasting, brings just that piece of this work to a 40 hour a week job.

…I was to work until the job was finished…

Fundraising and awareness raising consume similar amounts of time and energy. Record keeping, social media, public relations, team building, grant reviews… There is a reason the American Cancer Society employs the number of people it does–a reason that the household names in cancer funding employ the staffs they do.

Impossible isolation

There are at least a dozen small foundations working on NET cancer. Most are one-or two-person operations established and run by individuals whose lives have been touched–or destroyed–by NET cancer. We are, each of us, determined to bring this beast down. But too much of the time, we are working alone. We are isolated–and that isolation weakens the effect of our efforts.

…I have set myself a seemingly impossible task…

And even the bigger foundations–the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–are hamstrung in their efforts by the tiny size of their staffs. I know what it takes to organize a conference, do a major mailing, maintain a website… What they do–what all of us do–is nothing short of miraculous.

Creating a new road

But there is an awful lot of weight on a very small number of shoulders. And sometimes it seems like we are all trying to carry the full load by ourselves. We cross-post some things on Facebook, Pinterest and elsewhere. But we don’t seem to talk to each other very much beyond the needs of the moment.

…isolation weakens the effect of our efforts.

I’m probably the worst of us when it comes to that. It was the mistake I made at the beginning–and it is a mistake I have continued to make since. It has left me physically and emotionally exhausted–and when I look at what I wanted Walking with Jane to be and what it has become I know that I cannot continue as I am.

Recruiting stories

Back in January, I wrote a series of pieces on goals for the year ahead. Among those goals was the need to develop closer ties among all the groups engaged in the fight against NET cancer so that we could all do a better job. It is still an item on the to-do list.

…we don’t seem to talk to each other very much…

But we need to do more than simply unite the groups working on this in the US and elsewhere. We need to get patients and caregivers far more involved than they are now in the public relations, fundraising, and awareness sides of this. I tell Jane’s story constantly–and it is a powerful one that rarely fails to grab whatever audience I tell it to and move them to some action.

Coming together

But each patient, each caregiver has a similar story to tell–and they are stories we need to tell–and tell to the broadest audience we can reach.

I tell Jane’s story constantly…

There is a stone on my desk with a quote from Helen Keller etched into its surface: “Alone, we can do so little; together, we can do so much.” We need to stop working in isolation; we need to work more effectively together.

Together, we can do anything--nothing is impossible.
Together, we can do anything–nothing is impossible.

Preparing for a long walk

Boston Marathon Jimmy Fund Walk, Fundraising, Jane, NETwalkers Alliance, Uncategorized

Hat in hand

Dear friends,

Jane and I usually liked snowstorms. They often meant an unexpected day off from work and an extra hour or two snuggling under the covers. We would have a leisurely breakfast, then go out to shovel together. I would clear a path to the drift from the snowplow at the end of the driveway and work my way through that mountain while Jane attacked the path to the front door before starting on the snow in the driveway.

We are making a difference…

We made a game of it, her working from one end and me from the other. When we finally met somewhere in the middle we would hug and kiss as though we had been separated for days rather than an hour–and that the obstacle between us was greater than a few feet of snow.

Missing my other half

Clearing the snow from the driveway and walks is not the same since Jane died of NET cancer in December of 2010. Now it is just a chore I try not to think about as I do it. Every snowstorm is laced with too many memories. The hot chocolate doesn’t taste the same when there is no one to share it with.

We made a game of it…

Doctors and researchers learned a lot from Jane’s final struggle with NET cancer—and they have learned a great deal more since. The use of liver embolization has become relatively common in assaulting NET cancer tumors that have metastasized to the liver. We have promising new drugs in trials that may better slow the progress of the disease and its debilitating symptoms.

On the near horizon

Later this year, a Phase 2 trial on an immunotherapy treatment that seems to offer a chance of a cure for some patients will begin. A new scanning technique using Gallium-68 is being tested and is detecting NETs we were not able to see before—as well as giving greater clarity to those we can see using the relatively new Octreoscan developed since Jane’s death.

We have promising new drugs in trials…

Those new scanning methods, combined with greater awareness in the medical community, have increased the number of NET cancer cases being diagnosed every day. Four years ago, we were finding 34 new cases a day. Now, 40 new people will hear they have NET cancer in the US today. Another 40 will get that news tomorrow and another 40 the day after that.

Cost of a cure

And while we can offer them more hope than we could offer Jane 55 months ago, we can still not offer them a cure. It is only a matter of time before the number of deaths attributed to NET cancer every day begins to increase to match the number of diagnoses if we don’t keep moving the research forward.

Now, 40 new people will hear they have NET cancer in the US today.

But research costs money—lots of it. And while drug companies and government have increased their support a little bit in recent years, we are still spending barely $8 million a year on a form of cancer that is so nasty even patients are sometimes reluctant to talk about it and its symptoms.

Walk the walk

That’s where you and I come in. I’m not wealthy—and neither are the vast majority of you who will receive this letter. But fighting a cancer whose research has been so poorly funded for so many years, every dollar counts.

…research costs money—lots of it.

And every dollar you donate through this letter will go straight into carcinoid/NETs research at the Dana-Farber Cancer Institute through my Boston Marathon Jimmy Fund Walk. Again this year, I will take on the 26.2 mile course in Jane’s memory–and in support of NET cancer patients everywhere. Please, give what you can.

Change the future

We are making a difference with every dollar every day. And some day, I really will stand at Jane’s grave and tell her we’ve killed her cancer once and for all—that no one is going to die of it ever again.

Please help us make that day happen sooner with your donation today.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane

Team Captain, NETwalkers Alliance

p.s. An anonymous donor has again offered to match the first $5000 I raise between now and June 30. That means when you donate to my Boston Marathon Jimmy Fund Walk now, your donation is effectively doubled. Please take advantage of this generous opportunity.

p.p.s If you cannot make a donation, please share this letter with people you know and encourage them to get involved. Or, if you’d rather make a donation for NET cancer elsewhere–please do so. I want this thing dead.

p.p.s Of course if you’d like to walk with us, either for real or virtually, you can sign up for that here.

The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic--the research is real.
The most important victory is not me crossing the finish line in Copley Square; it is finding the answer to NET cancer. The walk is symbolic–the research is real.

Garden lessons for NET cancer

Goals, Marketing NETs, Uncategorized

Creating seedlings for the summer garden

It’s snowing again in southern New England. We’ve picked up another eight inches today so far. We could end up with as much as a foot by the time this storm drifts away sometime tonight. I cleared six inches from the driveway and walk about two hours ago. I’ll have to go out again in a little while to clear them again.

…even the answers we have are not very good ones.

Ten days ago, I planted some perennial seeds for this year’s garden projects. Earlier this week, I set up my plant lights as the first seedlings emerged from the soil a full week ahead of schedule. This weekend, I’ll start more seedlings and likely begin transplanting some of the things that are already up into bigger quarters.

The farmer’s garden

Both my grandfathers were farmers and my father grew up on his father’s farm. He worked not only on his father’s land but on the neighboring spreads as well. He turned the soil, hoed out the weeds, bailed the hay, milked the cows and tended the chickens. But we didn’t have a garden until I was ten–and then, I think, only because my mother wanted one.

It’s snowing again in southern New England.

My mother’s first garden was a small thing–a 12 foot circle of dirt just outside the kitchen door between the house and the driveway. She grew tomatoes there, and very little else with much success. Radishes, I think, and gnarled carrots that were stunted and twisted by the clay and rock of New England soil. It was a good place to dig for worms.

Lessons from the garden

Farming is in my blood but I didn’t have my own first garden until the year after I graduated from college. I was living with friends in a house that had a small yard with some raised beds and some leggy, unkempt roses nestled against the foundation. It wasn’t much, but it gave me some pleasure. I like to see things grow–and I don’t mind getting dirty in the process.

My mother’s first garden was a small thing…

I’ve learned a lot in my gardens–sometimes even about plants. I was impatient and short-tempered in my youth, but hiking up long trails with a heavy pack taught me that I needed to learn patience and my gardens were the place I learned to be that. You can’t rush the growth of a plant, nor can you slow it down once it decides to start growing.

Garden realities

And you can’t count on plants any more than you can count on people sometimes. You can do everything right with a pepper plant, but that doesn’t mean you’ll get a bumper crop of peppers. Nor does it mean the Habanero peppers you grow this year will have the same heat as the ones you grew last year. In the garden, as in life, nothing is entirely predictable. You can only do the best you know how and adapt when you have to.

You can’t rush the growth of a plant…

People laugh when I tell them it takes three years or more to get a garden truly doing it’s best. It takes two years just to get most of the rocks out of the soil here in New England. It takes three years to build the soil into something better than dirt. It takes manure and compost and careful attention to soil composition and acidity to really get things cooking.

The impatient gardener

But people want things right away. They throw chemical fertilizers and herbicides and pesticides at their plants without paying attention to anything but their own need for a quick fix and a quick success. In the process they often make the longterm results worse. Kill off the bees and the earthworms with pesticides and herbicides and destroy the tilth of the soil by relying too much on chemical fertilizers at the expense of organic matter and your yields will decline markedly over time.

…nothing is entirely predictable.

The lessons I learn in the garden I try to apply to every aspect of my life. As a teacher, I quickly learned that every student was as different as every tomato plant. Each one had to be treated as an individual. I learned I had to be just as patient with people as I did with the plants in the garden.

Moving quickly, moving smartly

I’m learning those lessons all over again as I work on Walking with Jane and NET cancer. My initial goals were shaped by my anger and frustration and impatience. NET cancer is a disease and my gardening instinct is to move quickly when I see a plant–or a person–in trouble. In terms of finding a cure, we need to do that quickly.

But people want things right away.

But organizations are made up of people–and while it is all right to be impatient about finding a cure, being impatient with people does about as much good as tugging on a plant to try to get it to grow faster: about all you accomplish by doing that is to pull a useful plant out of the ground. Everyone is doing the best they can with the tools they have to work with. You can’t cultivate people by throwing fertilizer at them; nor can you ask someone who is an apple tree to grow a turnip.

The patient gardener

And the same thing applies to me. Four years ago this month the idea of Walking with Jane began to coalesce out of conversations with a number of friends and colleagues. It would be another 14 months before we were ready to create Walking with Jane as a non-profit with a clear vision of where we wanted to go and what we wanted to do. And that vision has continued to evolve.

You can’t cultivate people by throwing fertilizer at them…

I used to tell young teachers–and still tell young gardeners–that it takes three to five years to become good at something you do. It takes five to seven years to really master a new skill or fully develop a new idea. By that measure, I am only mid-way to really knowing what it is I am doing.

The master gardener

People like to say that if you’ve been dealing with NET cancer for six months you have the equivalent of a Ph.d in the subject. But that is more a measure of how little we really know about the disease than it is a real understanding of the disease and how it works. The idea may make us feel good–make us feel like experts, but we aren’t. We only become experts when we recognize we have more questions than answers–and that even the answers we have are not very good ones.

…the same thing applies to me.

In the garden or the classroom, I may be an expert at that level. But in the worlds of NET cancer and non-profits, I’m not even sure I’m qualified to scatter a few seeds on the ground in the hope something useful comes up.

It's snowing again in southern New England but my thoughts have turned to my garden rather than winter. I've started my first plants for this year's projects.
It’s snowing again in southern New England but my thoughts have turned to my garden rather than winter. I’ve started my first plants for this year’s projects.

Best and worst of times

Uncategorized

Worst times for Walking with Jane

I was seriously thinking about shutting this website down one year ago this week. It was sucking up time and energy I thought might better be used elsewhere. Thirty months after its launch, the site had averaged less than 15 views a day for the preceding three months, and barely 18 a day over the previous year.

…someday–soon–NET cancer will die.

The reason I’d started the site was I saw very little information on carcinoid/NETs that was written in a language regular people could understand. I remembered my own frustration when Jane was first diagnosed. I wanted to help other people who suddenly found themselves in that same boat. I lamented the lack of support groups for both patients and caregivers. There were no online groups I could find and face-to-face groups meant a drive of two hours or more even in New England.

Bad times on walkingwithjane.org

Among the first things we launched was an online forum that had immediately become a spam magnet. In the three months it was up it attracted over 3000 posts–none of them from patients. Only two were not ads for something with no connection to NET cancer–and one of those was from me. Since then, a number of support groups have come to my attention on Facebook, all hidden behind strong privacy walls and patrolled constantly by administrators to keep them that way.

I was seriously thinking about shutting this website down…

But initially the main site seemed to do pretty well. Our first five months attracted over 6000 views. But the fall from grace thereafter was steady and implacable. It didn’t seem to matter what I wrote about or what links we provided or how much I shaped each piece to SEO standards. I read everything I could about what made a website popular. None of it made much difference.

Worst times on walkingwithjane.org

By last February, I was ready to hang it up. I decide to give it one last push. If the March numbers did not show significant improvement, I would shutter walkingwithjane.org and rethink what I was trying to do.

…initially, the main site seemed to do pretty well.

I spent some time looking at what pieces had done better than the rest. There weren’t very many. I haunted support groups and listened to the questions people were asking in them–and not getting good answers to. I started trying to answer those questions.

Better times on walkingwithjane.org

A year later, everything is different. Last year, February generated just 475 views for the entire month. This year, February generated two shy of 1700. July was the last month with less than 1000 views and despite the slow start in January and February of 2014, we had nearly 17,000 views for the year.

…I was ready to hang it up.

The website was not the only thing that took off last year. In 2013, our Jimmy Fund Walk team had seven walkers signed up, five of whom walked all or part of the course. We raised $21,870 in that effort. The year before, we’d had a slightly larger team, but only raised about $17,000.

Better times for walking

In 2014, we merged our team with another team that was also raising money for NET cancer research. that combined effort created a team of 48, including five virtual walkers. We had seven Pacesetters–people who raised more than$1500 each. As a team, we raised nearly $68,000.

A year later, everything is different.

Our Relay for Life team raised over $9000 last year for the American Cancer Society, though the size of the team continued to shrink despite our best efforts. That was the lone problem on the fundraising front.

Better times spreading the word

We appeared with Drs. Jen Chan and Matt Kulke on Doctor Radio twice in 2014 to talk about NET cancer. There were stories printed in local newspapers about our efforts that helped educate people about NET cancer. We were officially recognized by the IRS as a 501 (c)(3) charitable organization. I was reappointed to the Dana-Farber Cancer Institute’s Visiting Committee for Gastrointestinal Cancers.

As a team, we raised nearly $68,000.

It was a great year for Walking with Jane.

Bad times for me

But it was a hideous year for me personally. While I contemplated shutting the website down, I was also mourning the loss of one of my oldest and dearest friends–a woman I had gone to high school with and who had changed my life during a truly troubled time. In the six months before her death from triple negative breast cancer, we had talked almost every day–both of us very aware that she was, barring a miracle, facing the end of her life.

It was a great year for Walking with Jane.

In June, another of my oldest friends learned his wife has breast cancer. This fall, three of my favorite students lost their father to colon cancer. Another friend lost her mother to Parkinson’s. My father-in-law was diagnosed with a serious case of prostate cancer.

Worse times for me

But August delivered the worst blows. I lost one of my two nieces after a long illness. She left three children. Two days later, my phone rang at 5:30 a.m. My brother was calling from Seattle. My father had had a stroke a few hours earlier. It wasn’t good. How soon could I get there?

But it was a hideous year for me…

I caught the first flight out of Boston I could get to, but he was dead before I landed. I spent a week with my brothers and sisters making calls to his friends and cleaning out his house.

Times that have passed

My father and I were estranged for many years. Jane once had to physically separate us during one of his visits. But things changed in 2010. He had lost my mother after a long battle with Alzheimer’s in February. When I called him the night Jane died to tell him she was gone, he gave me the only consolation that made any sense. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.”

…August delivered the worst blows.

I flew out to Seattle every Christmas after Jane died. We spent Christmas Eve and Christmas night together and talked about what we had lost and what we were trying to do deal with that loss. We finally had something in common. I miss him.

Times of nightmare

About once a month since Jane died, I have a dream. We are out somewhere and we get separated. I call her name. She does not answer. I look everywhere for her. I cannot find her. I become increasingly frustrated and upset as I race around trying to find her. Then I wake up. In that moment of realization I am unbelievably sad and upset. Sometimes I wake up with the tears already streaming down my face.

But things changed in 2010.

I’ve had that dream every night for the last two weeks. Maybe I have had it every night for the last four years, two months and 19 days but don’t remember having it most nights. I only know that most nights I avoid going to sleep for as long as possible.

Times of reflection

In December, I took a week off when my brother came out to visit. I’ve found it very hard to get back to work since he left. Part of me would like nothing more than to stop doing all this work on Walking with Jane. I’d like to lie in bed and stare at the ceiling. I’d like to curl up in front of the TV and pump DVD after DVD into the player. I’d like to sit and watch the snow pile up higher and higher, blocking the doors and the windows and relieving me of any responsibility for anything.

About once a month since Jane died, I have a dream.

I’ve spent the last two weeks thinking about the goals I can’t seem to reach and the seeming futility of what I am trying to do. February has been a cruel month. I’ve lost track of how many people in the NET cancer support groups have died in the last 28 days. Every day brings word of another death or two or three–of another person who has been told there is nothing more the doctors can do–of another person going home to die.

Times of hope

But for each of those stories I hear about someone getting into a promising trial or undergoing a liver embolization that alleviates their symptoms and slows the disease; I read about others finally getting a definitive diagnosis thanks to an Octreoscan or Gallium scan; and I hear about the new immunotherapies on the horizon that may finally offer hope for a real cure.

February has been a cruel month.

Maybe that’s why I go searching for Jane more often in my dreams: to tell her there is real progress being made and that someday–soon–NET cancer will die. Or, more likely, I just miss her.

Our Jimmy Fund Walk team was huge last year with 48 participants. This is the group that started at the 13.1 mile point.
Our Jimmy Fund Walk team was huge last year with 48 participants. This is the group that started at the 13.1 mile point.

For Jane, Valentine’s Day, 2015

Jane, Poems, Uncategorized, Valentine's Day

For Jane, Valentine’s Day 2015

I weep. The snow encases grief in silent white
Cement that crumbles. Cold ignites the frozen tears
That dry the rotting purpose of silent noisome light.
 
My words are paper matches flung against the starless night
And sunless days of deepest space when all is gone
To less than nothing. Nothing moves and nothing sings.
 
My soul aches silence none can hear or feel or see;
That none can taste or smell or sense. The maggots chew
The sounding strings and chew the echoed body’s boards.
 
Five times this day has come. Five times this day has passed.
For fifty months this salt has seared my days and nights
And tried to cleanse my heart and tried to scald my mind.
 
The snow may fall, the wind may rise, the cold may pierce
And shriek the void; still, dawn will come and I will rise
And sing the song and dance the dance ’til time and space both end. 
 
All my love, always and all ways,
Hubby
I wrote a poem for Jane every year on Valentine's Day and on our anniversary.
I wrote a poem for Jane every year on Valentine’s Day and on our anniversary. I still do.

Hell in a cold winter

Boston Marathon Jimmy Fund Walk, Grief, Uncategorized

Why, this is Hell

I learned something important over the last two weeks. While I am not constantly aware of the pain Jane’s death has caused me, I am in no way fully recovered from that event despite nearly 50 months having gone by. I can pretend, sometimes for weeks at a time, that I am back to a state of normalcy. But that is an illusion–or worse, a lie I convince myself of.

 It’s the only thing that keeps me sane.

Two weeks ago, I had the latest in an ongoing round of oral surgeries. I followed the surgeon’s post-operative directions flawlessly. I iced the site of the latest wound the way one is supposed to, avoided the nuts and crispy foods, outlawed juice, tomato sauce and all the other acidic foods I like, gave up the heavy lifting of my constant training. I spent four days largely confined to the house we built, reading novels to take myself out of the world.

Staving off Hell

It wasn’t enough. No matter how effectively the books populated my mind with other people, when I came out to eat or sleep, I was still alone–am still alone. I posted to my online grief group, trying to stay positive. But words on a screen are useless when what I really need is Jane’s physical presence–her voice–even the sound of her breathing.

I spent four days largely confined to the house…

Then it began to snow. Neither of us liked to shovel snow, but we made a game of it. Jane would start at the garage end; I would go down to the street where the plow had left a drift. We would set to work. Sometimes we pretended we were working on the tunnel between England and France. Other times, it was the transcontinental railway. When we came together somewhere in the middle, we would hug and kiss as though we had been separated for days in celebration of the breakthrough. When we were done, we would come upstairs for hot cocoa, then sit on the couch–her feet buried under my legs to warm them up.

The Ice Hell

Now, I wheel out the snow blower I bought after Jane’s death. There is no romance or fantasy involved in the task. To be truthful, I try to avoid thinking of anything beyond guiding the machine down the driveway. I fail at doing so, miserably. There are too many memories and they flood into me like the Red Sea on the Egyptians.

Then it began to snow.

The days have been cold–far colder than normal–the last two weeks. That, too, isolates me. A group of us has a monthly lunch date. But many of the retired teachers in that group are elderly. They don’t do well with the cold. This month’s gathering was cancelled as a result. I didn’t realize how much I was looking forward to the event until I got the call it was not going to happen.

Presentation Hell

And then there was Friday. A group of student councils from area high schools was having a conference. I’d been asked to set up a table and do a series of short presentations for Walking with Jane in hopes of getting some of the schools interested in doing fundraisers for the Marathon Walk. I told Jane’s story seven times over the course of about three-and-a-half hours.

…they flood into me like the Red Sea on the Egyptians.

I taught high school for 34 years. Every class was a high wire act. As Jane said one time, even if you were teaching the same thing five times over the course of the day, the last group deserved as much energy and focus as the first one got. You had to do every show as though it were the first time you’d said it. Great stage actors, great stand-up comics have to have that same attitude.

Hell on stage

So that’s what I did Friday night with the most wrenching material any teacher, actor or comic ever presented. There’s no way to insulate oneself from that much raw emotion–that much reliving of the horror of watching the person you love most die before your eyes. It comes at a steep cost–but I pay it. NET cancer doesn’t die if people don’t tell their stories–and I want it to die more than I want to live most days.

And then there was Friday.

I understand why people don’t do what I do. I understand why people bury the dead not just physically, but also mentally and emotionally as well. I know why many men remarry within a couple of years of losing their spouse–and why many women, given the chance, do so as well. We want to find some way to mask the pain–to bury it any way that we can. Grief is Hell.

Edwards’ Hell

I used to teach Jonathan Edwards’ “Sinners in the Hands of an Angry God.” I tried to explain his vision of Hell this way: Have you ever scalded yourself with really hot–literally boiling–water? That pain you feel, right at the outset, before your brain intervenes or the nerves die–that is the beginning of Hell. Now, imagine that initial pain never lessens, never eases in any way–but goes on and on forever at that same intensity–and you never, in any way, get used to that scalding initial pain. That is the Hell of Jonathan Edwards.

Grief is Hell.

Sometimes, I think that is what real grief is like. It never truly ends. But, unlike Edwards’ Hell, it ebbs and flows. And somehow, that makes it worse. We get the illusion that we are getting better. We begin to hope that, finally, we are going to stop hurting–that our lives are going to be more than coping with the pain and that we will be able to truly live again.

Hell in the grocery store

And then we are walking through a store and see a can of a particular soup on the shelf–maybe so briefly we do not even know we have seen it–and the pain comes roaring back in, overthrowing every coping strategy and barrier we think we have in place.

And somehow, that makes it worse.

My problem is that because of what I am trying to do–put an end to this foul cancer–I purposely set off those triggers constantly. Every article I read, every piece I write, every talk I give puts me in contact with the raw emotions I felt the day Jane was diagnosed–and every day thereafter until we buried her.

Marley’s Hell

That makes me a stupid fool who insists on putting his hand in the flames every day because maybe the evidence of the last 100 times is wrong–maybe today it won’t hurt. And maybe today I will tell that story to the right person who will have the right skill set to eventually kill NET cancer. But probably not.

…and the pain comes roaring back in…

We can’t stop NET cancer from killing those 34 people who will die of it today. We can’t stop NET cancer from killing the 34 people it will kill tomorrow or the next day or the day after. Nothing we can do will bring Jane back to me–or bring anyone else’s loved ones back to them. Those are all truths, and we have to live with them.

Ending Hell

But our actions today can make a difference for others on down the line. There are thousands–maybe millions–of people out there who have NET cancer and don’t know they have it. They have husbands, wives, fathers, mothers, children, loved ones who will feel this pain someday if we do nothing.

…maybe today it won’t hurt.

So I made a choice. If increasing my pain means that somewhere someone in the future doesn’t have to feel what I feel now, then that is a trade I am willing to make–even if it means I lose a week periodically to recover. It’s the only thing that keeps me sane.

I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.
I look like Hell in this picture likely because I seem to live in Hell these days. But I was at a conference for student council members from the region to talk about Walking with Jane.

 

Goals for WWJ for 2015–Prologue

Marketing NETs, NET Cancer Awareness Day/Month, Uncategorized

An early start

When I was five, my Grandfather sat me down on the back porch of his home in the Ben Avon borough of Pittsburgh and explained the process of setting goals and planning to me. He put it in a child’s terms so I could grasp what a powerful idea it was. Since then, I’ve never been without a set of goals and a set of plans for how to achieve those goals.

‘God helps those who first help themselves.’

That concept got a booster shot when I started working for Sears my last year of high school. It was, then, an organization that took great pride in planning. It was what set them apart from other stores and was a major reason for their success. The day they abandoned their commitment to setting goals and planning is the day they began their fall from the pinnacle of the retail world.

The original goals

On the plane back from Seattle on January 1, 2011, I began thinking about the organization that would eventually become Walking with Jane. My primary goal was to support research into–and raise awareness of–carcinoid/NETs. Jane died because too few doctors had ever heard of this form of cancer. Jane died because we were not spending enough money to fund much in the way of research over the 40 years since the government had decided it was not cost-effective to spend money on it.

…I’ve never been without a set of goals…

But having a goal or two means nothing without a plan for reaching those goals, so I spent that flight thinking about ways an English teacher with minimal medical background could have an impact. I’d written a pamphlet about the disease on my way to Seattle. Now I needed to figure out how to market that–and how to get it into the hands of people who needed the information that pamphlet contained. I needed to figure out how to raise significant amounts of money to fund research. And I needed to know a lot more about carcinoid/NETs and the fight against it than I did.

The power of ignorance

Nearly everything about that initial plan came out of my own ignorance and inexperience. In some respects, that was a bad thing. But in others it was a good thing: I didn’t know what was supposed to be impossible; I knew nothing about the politics of cancer research; I knew none of the things that might have caused me to throw up my hands and walk away in despair. I saw only a set of problems that needed to be solved.

…I needed to know a lot more about carcinoid/NETs…

I took most of the month of December off this past year from my work on carcinoid/NETs. I was physically, mentally and emotionally exhausted. It was not just the effort against carcinoid/NETs. I lost my father to a stroke in August. I lost one of my oldest friends to breast cancer in January. I lost a niece to a long illness in August. Friends lost mothers, fathers, wives, husbands, and children. Friends and family members were diagnosed with a plethora of serious, sometimes fatal, diseases. My father-in-law was diagnosed in November with advanced prostate cancer that has spread to his bones.

A chess lesson

There is a concept in chess called “the overburdened piece.” It is a piece that supports so many other pieces and positions that it becomes the center of attention for both players–often with fatal consequences for the game of the player that piece belongs to. There were simply too many demands on my mental and emotional resources by the end of the year–and something had to give.

I didn’t know what was supposed to be impossible…

I compounded those issues by beginning to write a book on my personal grief process. That meant going back to the beginning and reliving the last months of Jane’s life. I thought I was ready for that. And I am. But the process is proving far more difficult than I anticipated. What I thought I could create a draft of in a month is less than a quarter completed. The writing has been good for me emotionally but has swallowed great chunks of time and psychic energy.

Waking up on Christmas morning

In addition, I decided not to go to Seattle for Christmas this year, given my father-in-law’s fragile health. That meant spending Christmas for the first time since the year before Jane’s death in the house she and I built together 20 years ago. I was ready to reclaim that part of my life, as well–but again, there was a steep emotional price. I woke up in our bed on Christmas morning, had our traditional Christmas morning breakfast, and prepared to welcome her father and sister for Christmas dinner.

I thought I was ready for that.

Four years and 22 days after Jane’s death, carcinoid/NETs still plagues more than 110,000 people in the US who know they have it–and God only knows how many more who have it and don’t know the name of the cancer that is killing them. We have made progress on many fronts: We know more about the disease than we did on the day Jane was diagnosed; we have new drugs approved for use against it; we have more drugs and treatments in trials; and ideas for new treatments waiting in the wings for funding.

Goals ahead

I spent last night thinking about what the goals need to be for the year ahead. I thought about how to reach those goals and what will need to happen for us to make those plans work. Over the next few days, I’ll unveil those plans and ask for your help in making them happen–not just with your money but with your time and effort.

 I was ready to reclaim that part of my life…

I put out a couple of short posts on Twitter and Facebook the last two days. The first was a wish that this would be the year we find a real cure for NET cancer. The second was to remind all of us that it takes more than prayer to make things happen in this world–it takes our sustained effort.

As my grandfather used to remind me with some frequency, “God helps those who first help themselves.”

Gathering a successful Marathon Walk team together requires planning. Without planning--a goal is nothing more than a dream.
Gathering a successful Marathon Walk team together requires planning. Without planning, goals are nothing more than dreams.

Help us kill Jane’s cancer for everyone

Boston Marathon Jimmy Fund Walk, Death, Jane, Marketing NETs, NETwalkers Alliance, Uncategorized

Jane’s last waking hours

We were watching a “Frazier” rerun in Jane’s hospital room four years ago today. Jane had not slept much the night before but we had moved her out of bed earlier. Now she was having trouble keeping her eyes open. The nurse asked her if she wanted to get back in bed and take a nap—and she did.

…you’ll be making a difference in the lives of carcinoid/NETs patients…

Moving Jane from the chair to the bed meant getting her back into a sling that hung from a crane. I remember having to support her head as we moved her that morning—something I had not had to do before. Alarm bells should have gone off in my head at this new weakness, but we had been in the hospital for more than a month. I had helped change her bedclothes after multiple episodes of diarrhea, walked her through two comas, major heart surgery, and, just the week before, the installation of a pacemaker.

Everything looked promising

Neither of us had gotten much sleep the night before, but I was more optimistic every day that we were headed in the right direction in this long battle against her NET cancer. She had begun physical therapy again two days before and today was the third day in a row she’d been able to spend time out of her bed.

I had helped change her bedclothes after multiple episodes of diarrhea…

I held her hand as she fell asleep—and continued to do so as I read once she was napping.

Jane’s last carcinoid attack

Maybe 45 minutes later the nurse came in to take Jane’s blood pressure. While Jane was on a monitor, sometimes it would stop working because of her position and how thin her arms were. The nurse said she was checking it manually because of that ongoing problem.

…I was more optimistic every day…

But the monitor wasn’t the problem. Jane’s blood pressure was crashing as a new carcinoid attack went coursing through her body. This time there was nothing left we could do to stop it. Thirty-eight hours later, she would be dead.

What we learned from Jane’s case

In four months, from Jane’s single case, her doctors told me, we had essentially doubled our knowledge of carcinoid syndrome and NET cancer. It isn’t that we learned that much, it is that we knew so little. But Jane was a scientist—and she knew how important even the small amounts doctors and researchers could learn from her body as it dealt with the disease could be.

Thirty-eight hours later, she would be dead.

The world of NET cancer has changed a lot in the four years since Jane’s death. We’ve found some new techniques that can slow down its advance and discovered new methods that can help us detect it more reliably. And we know a lot more about the genetics that drive the disease. But we still have nothing that looks like a cure.

The search for answers

Each year since Jane’s death, I’ve taken on the Boston Marathon Jimmy Fund Walk to raise money for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute to help find answers to the strange cancer that killed her. From those four walks I’ve personally raised over $45,000 for the cause.

…we still have nothing that looks like a cure.

I’ll walk again on September 20, 2015 and serve as captain of the NETwalkers Alliance team—a new name for the Caring for Carcinoid/Walking with Jane, Hank and Anne team I’ve worked with the last four years. Every penny we raise will go to researching carcinoid/NETs and finding a cure for the disease that killed my wife.

You can help

You can help in one of two ways. First, you can join our Walk team. You can walk the full 26.2 miles of the historic Boston Marathon course from Hopkinson to Boston, or you can walk 13.1 miles along the same course, starting in Wellesley, or you can walk five miles from Cleveland Circle, or three miles from the Jimmy Fund Clinic. In each of those cases, you’ll need to raise $300. Or you can be a Virtual Walker, cover no distance, and raise whatever you can.

I’ll walk again on September 20, 2015…

Second, you can make a donation to my walk, to another walker on our team, or to our team in general.

Either way, you’ll be making a difference in the lives of carcinoid/NETs patients–and hastening the day I can stand at my wife’s grave and tell her that her cancer will never kill another living soul.

Pax et lux,
Harry Proudfoot
NETwalkers Alliance
(Formerly Caring for Carcinoid/Walking with Jane, Hank, and Anne)

Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.
Join us as we walk to kill carcinoid/NETs on September 20, 2015 in the Boston Marathon Jimmy Fund Walk.

For Jane on her 60th birthday

Uncategorized

For Jane on her 60th birthday,

November 17, 2014

The birds of winter have returned—

The house and garden buttoned down

Against the cold and damp and snow—

The leaves hang brittle, brown and dead,

Their colors fled like summer’s birds.

 

Your birth was sixty years ago–

Today, I mourn the empty space, 

The granite stone, the stolen days,

The vanished dreams now wreathed with tears

Like winter rain on frozen ground.

 

The birds of winter will depart—

The birds of summer will return—

And house and garden will again emerge.

Four years of winter bind my heart—

But buds remain within my soul.

                                (c) Harry Proudfoot

Jane Dybowski died of NET cancer on December 10, 2010. She taught at Westport high School in Westport Massachusetts for 30 years. She would have been 60 today. --Westport High School yearbook
Jane Dybowski died of NET cancer on December 10, 2010. She taught at Westport High School in Westport Massachusetts for 30 years. She would have been 60 today.
–Westport High School yearbook