Here are the final designs for the Marathon Walk t-shirts for our team. Last chance to correct spellings, etc. If you are not on the team and would like a shirt, they will cost $20 plus $5 shipping. All proceeds, minus shipping will go to the Walking with Jane Dybowski Fund at DFCI. To order a shirt, send a check for $25 with your size and your name and address to Walking with Jane, P.O. Box 9721, Fall River, MA 02720. If you want to make my life a bit easier, you can email me at walkingwithjane@gmail.com to let me know you are ordering a shirt so I can pre-order some.

Walking through our 25th anniversary

It seemed right to go for a long hike on what should have been our 25th anniversary this morning. Jane and I loved to walk together. It gave us time to talk. It gave us time to think. It gave us time to heal.

I  made Jane a promise on our wedding day 25 years ago.

Our long walks together are one of the things I miss most since her death. Walking alone just is not the same–but it is something I try to do most days, nonetheless. Generally, it lightens my mind and eases my soul. When I’m walking I feel like I can think and see more clearly.

Turning a short walk to a long one

My plan this morning was to go about nine miles. I tweaked my left arch this weekend and, with less than three weeks between me and the Marathon Walk, I can’t afford another break in my training. At this stage, nine miles is a light day and my plan was to take it slow and easy.

Walking alone just is not the same…

But five miles in, my body felt pretty good, so I took a four-mile detour to the cemetery to visit Jane’s grave. I didn’t have the mums I bought her yesterday or the poem or card I’d finished last night, but I suddenly needed to be close to her. It is a thing widows and widowers understand–but no one else, really.

Jane and our 25th anniversary

Jane always doubted we would reach our 25th anniversary. She said we’d have to count in dog years. She said she expected to drop dead in her classroom with a piece of chalk clutched in her hand. I told her we were both in good health and–while I had some doubts about 50 years given how late we married–25 seemed like it should be easy.

…I suddenly needed to be close to her.

For most people who manage to stay married for a quarter century, that 25th anniversary is a big deal. They renew their vows, have a big party or sneak off to the site of their honeymoon for a romantic dinner and a night alone. It is a joyous time–a milestone.

Observing our 25th anniversary

I spent four hours and 15 minutes walking, made two trips to the cemetery and stopped at the bank and the post office. I had cereal for breakfast and fixed myself an omelet for lunch. Later, I’ll have a cold sandwich and toast my wife with a single-serving bottle of champagne.

She said we’d have to count in dog years.

The tears have come and gone all day. I expect they’ll be back again later–and likely more than once. Today was once the happiest day of my life. I looked forward to it every year. I’d spend weeks looking for the perfect gift, the perfect card, and writing her anniversary poem.

Our might-have-been 25th anniversary

Waking up on any anniversary was like waking up on Christmas morning. We’d be awake before the alarm, if it was on. We’d trade cards and gifts and Jane would read this year’s poem. Then I’d warm the chocolate croissants and make a pot of tea that we’d eat and drink in bed. We’d surprise each other with gifts and cards and flowers throughout the day.

The tears have come and gone all day.

Dinner was at a restaurant we liked, followed by a champagne toast at home and a quiet evening holding hands and snuggling on the couch.

The cemetery on our 25th anniversary

We loved each other–and I still do. When I leave the cemetery, I leave three soft kisses and four “I love yous” at her grave. I did that twice today. And now I sit in this empty house remembering our wedding day and the 21 anniversaries before her death–and all the other days we shared.

…any anniversary was like waking up on Christmas morning.

Three of our former students got married last week. Two others got engaged. Half a dozen celebrated anniversaries. But three other people I know died of carcinoid/NETs this week, creating new widows and widowers–people for whom no anniversary will ever be the same.

Promises made

I  made Jane a promise on our wedding day 25 years ago. I made her two others on the day she died. I do not give my word lightly–and I take my vows very seriously. I loved, honored and cherished her every day of our life together; I have continued to work to kill this disease; and some day, I will at last be able to begin to honor her final wish–to move beyond this most painful loss.

The widower’s silver anniversary

I am a widower.  One week from today Jane and I would have celebrated our 25th anniversary. Maybe we would have gone back to the Lakes Region of New Hampshire where we spent our honeymoon–gotten the same room in the same hotel and eaten dinner in the Wolfe Tavern again–sat on the balcony and looked out over the water again.

We only know that doing nothing does nothing…

Or maybe we would have stayed here and celebrated with friends and family at a favorite restaurant. Maybe we would have come back afterward and snuggled on the couch in this house we had lived in for nearly 20 years.

The widower’s empty days

These are the things I torture myself with above the other tortures I have endured these last 44 months and 16 days. I endured the retirement dinner without her and each of our three previous anniversaries. I’ve endured empty Christmases, empty New Years, empty Valentine’s Days, empty birthdays, empty Halloweens, and empty Thanksgivings.

I am a widower.

People have tried to fill some of those empty days. I’ve tried to let them. Only rarely has any of us succeeded.

The widower’s hope

This weekend I spent time with some former students who have become friends. I felt human again for the first time in four years. I wasn’t a caregiver or a cancer fighter or any of the things that have come to define me since Jane’s death. I was just me–and it felt good.

…I have endured these last 44 months and 16 days.

But that has slipped away the last two days. There are letters to write and mail, articles to read and think about, events to plan and help execute, patients and caregivers to console…

The widower’s new losses

These last ten months have been filled with new pain and new hurt. I lost one of my oldest friends to triple negative breast cancer this winter–and lost both my father and a niece barely two weeks ago.

I felt human again for the first time in four years.

I have yet to come to terms with being a widower. Now, I am an orphan, too.

The widower’s mission

I have reached an age where Death is a constant companion. I watch it cull my friends and loved ones and am powerless to stop it–or even slow it down.

Now, I am an orphan, too.

Part of me says there is no point to what I am doing here–that people are going to die of one thing or another, so why fight to take even one arrow from Death’s quiver. But I have seen this arrow at work–and there is nothing clean about this arrow. It is foul and disgusting and filled with multiple levels of pain.

The widower’s view

Small pox is dead. Polio–in the US–is the shadow of a memory few remember beyond being vaccinated against it. Those things are true because someone cared enough to make them true.

…Death is a constant companion.

In the grand scheme of things, I don’t raise much money here, I don’t reach more than a dozen people directly in a week–I don’t do much at all that has a huge impact. But I also know every dollar matters and every life is precious–too precious to condemn to a hopeless life and a meaningless death.

The widower’s way

Carcinoid/NETs won’t die because of Jane or me, but maybe we can help buy a new fact or two, maybe encourage a new researcher or two, maybe bring comfort and knowledge to a new patient or two. Doing just a little every day, over time, can create a lot of difference.

…every dollar matters and every life is precious…

So I write the letters, make the speeches, read the articles, help plan and run events. We don’t know which dollar raised is the important one, don’t know which researcher will uncover the important clue or make the important discovery. We only know that doing nothing does nothing to help end this cancer–or any other.

As I write this, I am on my way to Seattle. Yesterday afternoon, I got an email from my sister that her daughter had died. This morning, I got a call from one of my brothers to tell me my father had a significant stroke last night and was in an induced coma. He had a second MRI this morning.

The results of that MRI showed a continuing and massive bleed in my father’s brain that will prove fatal in the very near term. I decided at that point not to delay going west until later tonight or early tomorrow and arranged to catch the first available flight that  would get me to Seattle quickly.

Here are the rough designs for the front and back of this year’s Caring for Carcinoid Walking with Jane, Hank and Anne Marathon Walk t-shirts. The first is the front of the shirt. The second  is the back.

Team members will receive the shirts for free. Currently, it looks like the price for people who want to buy one will be about $20 plus shipping.

Facing the debris

Forty-four months. Forty-eight months. Twenty-five years. The anniversaries swirl around me tonight like building winds. I can talk about wanting to move forward. I can even take small steps in that direction—a thing I could not have imagined even two months ago. But the next 23 days I walk through the debris of a shattered life while I try to rebuild my loving soul.

Orpheus is coming home from Hell…

Facing August

…anniversaries swirl around me tonight…

Brutal truths

I have always hated losing.

Forty-four months of endurance

It is easy to get caught up in those horrific final months.

Visions of love and hope

Part of me is terrified by September 2.

Visions of a journey

I can see the light dancing in her eyes…

The trouble is, you think you have time. –Jack Kornfield, attributed falsely to Buddha, but actually from Carlos Castaneda

Nine miles through time

I took a nine mile walk this morning. I did a lot of thinking as I pounded over the concrete and tar and wooden planks. I thought about the past. I thought about the present. I thought about the future.

…it begins with loving life…

I often think about the future when I walk–but today was subtly different. Usually, the future I think about is tied firmly to the past. I think about the next fundraiser, the next project, where I want Walking with Jane to be six months from now, a year from now, five years from now–and how we’ll get there.

Buddha time

But I woke up with Jack Kornfield’s fake Buddha quote in my mind this morning. It has haunted me all week, like a friend trying to get my attention: “You think you have time–time for everything; but you are not taking time for yourself. You are wrapped up in this disease that killed your wife–you are letting it kill you. Your life needs to be about more than killing this disease.”

I took a nine mile walk this morning.

It’s not the first time I’ve heard similar words in recent weeks. “You need to find a way to get out of yourself,” a friend told me two weeks ago. “You need to escape for a while.” And I do. I need to do something frivolous and silly and filled with meaning beyond the round of daily research and training for the next walk and planning the next event.

Cuts in time

Kornfield’s thought cuts in two directions. Jane and I thought we had time–time to write the books, time to travel, time to wake comfortably in each others arms. We did not have that time. I think I have time–but I know I don’t have time. There is an urgency to killing this disease that Jane’s death underlines for me every day–that the patients and caregivers I talk to underline every day.

‘You think you have time…’

But there needs to be time for something else, as well. Jane did not want me to stop living when she died. But the journey back from the land of the dead is a hard one for a living man–especially when there seems so little on that surface world that matters beyond the battle anymore.

A different time

And that is how this morning’s walk was different for a time. Intellectually, I know I likely have three or more decades of productive life in front of me. I am in better health than the vast majority of people my age. A twenty-mile walk does not strain my system, nor does a day of shoveling sand or rock. I know that.

The Buddha’s thought cuts in two directions.

But this morning, I felt it as well. I can’t spend 30 years as a walking dead man. It is not in me. And that means planning for things beyond killing cancer. It means finding a way to live again.

Life, death, and time

This is not to say I am walking away from the task at hand–far from it. But I’ll be far better at that fight if I can stop living with the dead past so much of the time. I know how badly my grief has crippled me. It leaves me unable to do more than stare at the wall a day or two a week–even when I know what I need to be doing.

I can’t spend 30 years as a walking dead man.

I used to teach T. S. Eliot’s Murder in the Cathedral. In it, he talks about the difference between living and partly living. Jane and I spent our lives fully living. Since her death, I have spent too much of my time partly living. I have forgotten the key to being fully alive is to live–to live fully in every moment, to experience every moment fully, to embrace every moment and every emotion fully.

Time to move forward

It’s time I got back to that. I’m not sure how I’ll accomplish it, but for a few minutes this morning, I was there–and I felt really good for the first time in a very long time.

…the key to being fully alive is to live…

I think, though, that it begins with loving life–a thing I suspect I understand far better for having embraced death so closely.

Anniversaries approach

Our walkingwithjane.org website turns three on September 2, the same day Jane and I would have celebrated our 25th Anniversary. While that day will be difficult for me–more difficult than I can describe–for patients, caregivers and donors it will, I hope, be a positive day.

It is what I will continue to do until we have a cure.

You see, the website almost didn’t make it to its third birthday. After three terrible months where no one was bothering to even look at the site beyond about 10 people, I spent part of February seriously thinking about shuttering this piece of the effort to focus my energies on other pieces of the Walking with Jane puzzle that were making–as near as I could tell–more of a difference.

Remembering audience

But I went back and thought about audience and realized that somewhere along the way I’d lost sight of what our audience needed instead of what I needed. I decided to give it another three months with a different focus.

…the website almost didn’t make it…

I spent a lot of time that first month just thinking about what Jane and I needed to have when she was diagnosed, about what I heard in patient support groups, and I looked back at those posts that had done better than average in the past. I realized that people were asking for real, clear information about what was going on in research, but they also wanted the truth about what it is like to have this disease.

What potential donors need to hear

And the rest of the world needed to hear what the face of this disease really looks like. They needed to understand about the hideous diarrhea, the gas, the bloating, the flushing, the heart problems–all the awful things that patients and caregivers face–up to and including the death patients face–a death like no other I have ever seen.

…they also wanted the truth about what it is like…

Let’s face it, there are lots of things about this form of cancer neither patients nor caregivers have wanted to talk about publicly. But if we are not willing to talk about those things we will never get the public attention we have to have if we are ever going to raise the money to find a cure. Those graphic cigarette ads not only warn about the resulting lung cancer, they also create a human face for the disease that is hard to ignore.

Making a difference for patients

So I decided to take the gloves off and come out swinging. If it didn’t work–on multiple levels–I could always go back to the original plan of giving up the website and focussing on other projects.

…a human face for the disease that is hard to ignore.

While it has not been easy, the change has been remarkable. For five consecutive months we have not only topped the previous year’s month, we have topped the best that month has ever done–often by substantial margins. And the comments, both online and off, say we are finally making a difference in the lives of patients, caregivers, and donors.

Other social media fixes

Our Facebook and Twitter accounts have also received subtle revisions that have changed things as well. We’ve nearly doubled the likes on Facebook and more than doubled the number of followers on Twitter by getting back to the main mission: educating people about carcinoid/NETs. We’ve tried to stay short and to the point. And our Twitter outgoing feed focusses almost exclusively on carcinoid/NETs issues. Our Facebook views are up 500 percent from where they were in January.

…the change has been remarkable.

There are pieces of the online world I still do not understand very well–or at all. I know we need to be on Pinterest and Instagram and a couple of other things–but time is increasingly a problem as we become more and more involved in a variety of fundraisers, conferences, and other projects.

Finding time for closer mission focus

Last week, we signed off on the final federal non-profit paperwork. This week, I hope to finish the last of the state corporate paperwork.

…time is increasingly a problem…

With those two monsters done, I’ll be able to get back to what this project is really about: killing carcinoid/NETs so that no one ever goes through what Jane did–and that 12,000 patients a year do; so that the 120,000 patients currently knowingly living with the disease have hope that they will not follow those 12,000 into the grave after years of unrequited suffering; and so that the untold numbers of patients who search for an answer to their undiagnosed physical ills get the answers they need and deserve.

Making a difference in people’s lives

That’s what I set out to do here in the beginning. It is what I will continue to do until we have a cure.

…I’ll be able to get back to what this project is really about…

I hope what we do here–and elsewhere–will make a real difference in your life–whether you are a patient, a caregiver, a researcher, a donor, or an interested friend.

Editor’s Note: Some of what follows may be emotionally difficult for some readers. I wrote it originally for someone who has been told there is nothing more her doctors can do for her and wanted to know how Jane prepared herself and me for her death. 

Preparing for death

“Everybody is dying of something,” Jane’s mother told us after she was diagnosed in 2004 with pulmonary fibrosis. “I just know what it is I’m dying from.” Jane brought that same attitude to her own death half a dozen years later.

None of us know what is lurking in a lab somewhere.

But while both women accepted their deaths with enormous grace when they came, neither went willingly or easily. They went on their terms–and only when a fighting chance had become no chance at all. Jane and I were both convinced three days before her death that she would come home–that in February we would go to New Hampshire together and sit looking out over the lake again as we had on our honeymoon.

Into the past

That is not to say we were neither of us prepared for her death when it came. We had begun to prepare for that possibility the moment her doctor said the lump in her liver was probably cancer–even before we had the final diagnosis of carcinoid/NET cancer–even before we went in for the biopsy.

‘Everybody is dying of something.’

The morning we got the preliminary diagnosis, Jane said she wanted one more week of pretending everything was fine. We would not talk about the cancer until the day of the biopsy. We would go back to the Lakes Region, where we had spent our too short honeymoon nearly 21 years before. We would take shorter walks–but we would take them. We would take shorter drives–but we would take them.

Creating memories, recharging love

The cancer haunted the trip from the first day, but we tried to ignore it. The day we arrived, Jane was exhausted and had no appetite. She sent me out for dinner on my own. It was the most painful dinner of our entire married life for me. It was the foretaste of too many dinners bolted down in haste and sorrow over the 28 days she was in the hospital–and the foretaste of the hell of all the solitary dinners since.

…Jane said she wanted one more week of pretending everything was fine.

It was the last meal I ate alone on that trip. We took turns pretending we were hungry or not hungry. We tried to buoy up each other’s spirits–and in large part, we were successful.

Taking what’s given

The hotel we had honey-mooned in had no room for us when I called for a reservation. But they had another, even nicer, hotel in Meredith and they arranged a room for us there. It had an enormous four-poster bed that existed in two different zip codes, a small seating area, a jacuzzi, a window seat overlooking the lake and a small balcony with a similar view. There at last, for a few hours, the cancer slid away.

The cancer haunted the trip from the first day…

Jane wasn’t very hungry, but wanted some chowder, so I went down the hill to a take-out place and brought some back to the room. We sat in the window seat with our legs entwined and ate and talked and dreamed. Eventually, we climbed the ladders on either side of the bed and slept in each other’s arms.

A final photograph

In the morning, we took a short walk around the bay. Jane loved taking pictures of landscapes and water scenes. She took her final pictures that morning. Then we recruited someone to take a picture of the two of us together. It is grainy and out of focus, but I framed it after she died and put it on a table where I can see it.

There at last, for a few hours, the cancer slid away.

We sat on the balcony, read the papers and had a small breakfast. Then we came home. We were rested and ready for the war ahead.

Power of shared memories

I tell this story because it was the beginning of how we prepared each other for her death. We created a final, powerful and beautiful memory that would sustain us through all the painful struggle that was ahead of us. The first step in preparing for death is to remember how much and how deeply you love each other.

We were rested and ready for the war ahead.

The trip was painful in very many ways–but it was also a joyful celebration of who we were–of who we still are. It was more important than any bucket list because it gave us a pool of remembered strength we could draw on when things became more difficult. And they did become much more difficult.

Facing death together

The morning after we came home was the day of the biopsy. I wish they gave spouses the same drugs they give the patient on days like that. Jane said they could have told her she would be dead within the week and it would not have bothered her. She said she finally understood why people became drug addicts.

…it was also a joyful celebration of who we were…

In the days after the biopsy we spent lots of time talking. We spent part of that time remembering the past, but far more of it talking about the future. We would neither of us give up hope until there was no hope. That was our pact. And when there was no hope, it was clear I was to let her go.

Life and death conversations

I did not have to infer that from our conversations. It was what she said. It is supremely important that you have this conversation with your loved ones, regardless of whether you are sick or not. You need to know what they want–and they need to know what you want, in terms of what measures to take when you are no longer in a position to make those decisions.

…when there was no hope, it was clear I was to let her go.

Your spouse–or someone else you trust–needs to have a signed medical proxy. If you want a Do Not Resuscitate Order, you need to sign that as well. But you need to know that the language in those, while legally accurate, is medically vague. Your healthcare proxy needs to know precisely what lines you are willing to cross and which ones you are not. (Each state or province has its own forms for a health care proxy, which is why I am not supplying a link to a specific form.)

Unexpected complications

Jane and I thought the language was pretty clear and went into the hospital with that understanding. When she had her first carcinoid crisis, I discovered just how medically vague the language could be. Fortunately, I had lots of conversations to fall back on–including the words “fighting chance” that we had often used to describe our bottom line.

…they need to know what you want…

Those conversations are not easy to have. They mean you are both admitting and accepting the idea of death. The first time I brought it up, Jane accused me of giving up and wanting her dead. I didn’t, but talking about even the potential of death was a place she was not ready to go yet. But comfortable or not, those are conversations everyone needs to have.

…I discovered just how medically vague the language could be.

The other thing that needs doing–and a thing we both neglected–is to make sure all the financial and other affairs are in order. Everyone should have a will. Probate is a major task without one, even for a married couple. A written list of where to look for everything is also a good idea.

Death and anger

Everyone is familiar with the five emotional stages of dealing with death. They don’t always seem to work very well when applied to grief, but they do seem to apply to those facing a fatal illness, whether their own or of someone they care about. We both went through denial, anger, bargaining, depression and acceptance. Of the five, I think the most difficult for couples–or at least for us–was anger. We tend to take our anger out on those who care about us because they are less likely to fight back.

…admitting and accepting the idea of death.

Jane’s anger was sometimes explosive. I think sometimes she wanted me to explode right back. There were times I probably should have. But I couldn’t because I was too aware of where the anger was coming from–and that made her even angrier. You are going to get angry. Your spouse is going to get angry. It is important–in that anger–to remember you really do love each other. Building that final honeymoon reservoir buttressed our reserves–but it was still a near run thing.

Answering death with patience

Jane asked me once why I never seemed to get angry–either with her or the cancer she was fighting. I told her I was enormously angry about it, but I could not afford to let it control me even for an instant. I needed to keep my mind clear because I could never know when I’d have to make a decision that would require all the knowledge and logic I had.

You are going to get angry. Your spouse is going to get angry.

“When we’ve killed this thing, I’ll be able to afford to feel again. Until then, for both our sakes, I have to stay lucid.” That sounds cold and heartless, but Jane understood it for the deep and abiding love it demonstrated. We both knew the cost of controlling our emotions to that degree.

Sources of anger

She also wanted to know how I put up with the constant mood swings she was throwing at me. “Why don’t you ever get angry at the things I say and do to you?”

We both knew the cost of controlling our emotions to that degree.

“I know that anger is not entirely you,” I told her. “Most of the time it’s the pain of the cancer talking. Sometimes, it’s that I’ve screwed up and deserve the anger. Whatever the case, me getting angry with you isn’t going to help anything.”

The power of listening

Of course this makes me look like a saint–and I was anything but. I was insanely angry a great deal of the time. I took it out on rotting tree limbs and recalcitrant rocks. I didn’t mow the lawn so much as I systematically attacked it. As Jane’s body weakened, she had fewer and fewer such outlets–and her anger had to go somewhere. I was willing to become that target.

‘…me getting angry with you isn’t going to help anything.’

Through it all, we talked and listened constantly and consistently. I cannot tell you what it is to watch the person you most love slowly waste away, becoming more fragile with every passing day. Mark Twain says that efforts to accurately describe grief would bankrupt all the languages of the world. Trying to describe Jane’s slide into death would bankrupt all the languages in the universe for me.

The power of forgiveness

We had one important conversation the day before she went into the hospital. She told me that I had saved her life–that before we met she was simply passing through a joyless life to a joyless death; she told me that she knew I believed I had done a lot of things wrong in our life together, but that this was not true–and that she forgave me for all the things I thought I had done wrong and all the things I would think I had done wrong in the days ahead; she told me that she did not expect to die from this operation–that she fully intended to live–but that if she did, she did not want me to stop living–that she wanted me to keep moving forward and doing good in the world; that she did not want me to mourn her longer than necessary; that she wanted me to fall in love again;  that she wanted me to find happiness again.

…she forgave me for all the things I thought I had done wrong…

I said many things to her that afternoon, as well. But none were so eloquent or as powerful as what she said to me. She had accepted the possibility of her death by then. I had not. My denial was based not only in my own need but in my role as cheerleader-in-chief, as well. It was my job to stay as optimistic as possible and keep her hope alive.

Remembering who you are

My wife had a huge heart. I cannot tell you precisely how she came to terms with her death. It was the one thing we never really discussed. She knew it was coming–though not when or where or how. She spent some of that final fall going through her books and papers–not so much organizing them as reading them and looking at them and realizing the huge impact she’d had on so many lives. She was a teacher, and a great one.

…we talked and listened constantly and consistently.

But we all touch many lives and change the lives of all we touch. Some we change for the better if we are careful. Some we change for the worse, though rarely intentionally. We all of us do the best that we can with the time and wisdom and knowledge that we have. I know Jane thought a lot that fall about the lives she had touched and changed and made better. She found in her heart the forgiveness she needed for her failures. It was that understanding of the power of forgiveness she tried to leave me with. It was her final gift.

The end

Twenty-six hours before she died, Jane came out of her coma one last time. I told her there was nothing left for us to try–that the balance had finally swung from fighting chance to no chance–and that in the morning they would disconnect the last of the tubes that were keeping her body going.

…we all touch many lives and change the lives of all we touch.

“You’re going home to the garden,” I told her.  She closed her eyes. I kissed her forehead, brushed her lips with mine. “Good night, my warrior princess,” I whispered. I knew her soul was gone, then. It was simply a matter of waiting for her body to die and let the last of her go.

My purpose

I started out here to try to help those who are dying–not just of this cancer, but of all the hopeless diseases we still cannot cure or heal–come to terms with death–and help them bring their loved ones to terms with it as well. I cannot say whether I have succeeded in that–or in bringing you any kind of solace.

‘You’re going home to the garden.’

Everyone, as a friend reminded me this morning, faces a different death. What we each need is different depending on what we are facing, what our relationship with each other is, and what our past experiences are. This is our story. But it may not be yours. I only hope our story proves helpful to you under the circumstances you are in.

My death experience

I do not fear death or dread it for myself. It is an inconvenient fact that these bodies wear out. Jane and I saw these bodies as vessels for our souls to travel in this earth upon. I feel her soul about me sometimes, but I miss the body that she animated, the sound of her voice, and the touch of her breath when we turned to each other in the night. Death has stolen those things from me–and that loss has changed me in ways neither of us saw coming.

Living your death

Do not give up hope. None of us know what is lurking in a lab somewhere. Some doctor or researcher may have some treatment just getting off the ground. Jane’s heart surgery was simply a first step that we hoped would lead to liver ablation, perhaps a transplant, and then a bowel resection. Each of those, we believed, would buy us a year or two more–and in that time perhaps someone would find an answer–or at least something that would buy us more time.

…that loss has changed me in ways neither of us saw coming.

Jane was a woman of science. She was also determined to find a way to beat this thing, if not for her, then for the next patient. That, too, helped her come to terms with the long-odds choices we were making. The knowledge that what she went through would ultimately help others was another way she came to terms with death.

An accidental journey to the past

Something happened overnight I don’t have an explanation for–but that has caused me to think about a new paradigm. A post from early 2012 decided to repost itself as though it were a new post. I’ve taken steps to ensure the security of this website and other venues we use to post information since discovering this early this morning.

We need a renewed vision that begins with patients and caregivers…

I also went back and looked at that post and realized how much my thinking has changed since 2012 when I wrote that post. At the time, I saw Walking with Jane very differently than I do now–just as I saw the fight against carcinoid/NETs differently than I do now.

Paradigm change

My vision at the time was not very clear. It was too much framed by grief and rage and failure. I understand the whys and wherefores of that vision: Jane had been dead for just over a year and those wounds gnawed at my mind constantly; I had made–for me–a huge financial commitment I was not certain I could manage; and I faced a disease that had suffered from a large dose of less-than-benign neglect for more than 40 years.

…that has caused me to think about a new paradigm.

I felt an enormous fresh weight on my shoulders I had no idea how to deal with. The weight has not grown less in the intervening months–I have just grown more accustomed to it and found ways to let others bear some of that weight on occasion. I’m not very good at the latter, but am trying to get better at it.

Toward a team of our own

The piece I wrote then was called A Jimmy Fund Marathon Walk team of our own and we still need such a team at times in one sense: NET cancer, carcinoid, NETs, carciNETs, lungnoids–call it what you will–truly does need a team of its own. While I’d like to see a world where the various cancers are not competing with each other for attention and research dollars, that competition is very real. And this form of cancer has truly gotten the short end of the stick for more than 40 years.

I felt an enormous fresh weight on my shoulders…

In the months since I wrote the original piece, Walking with Jane has traveled in a very different direction than that piece proposed. Within days, we had combined forces with the Caring for Carcinoid Foundation to set up what we hoped would be a larger team than either of us could create individually. That team added the children and friends of Hank Landers to the mix as well that year.

The new paradigm

Those decisions created a new paradigm for me: the need to bring together all the diverse groups of carcinoid and NETs patients and caregivers into a united front against the disease. That movement took another step forward this spring when Robert Ramsey, who lost his wife Anne before Jane was even diagnosed, joined his Kulke’s Krewe team with ours to form Caring for Carcinoid Walking with Jane and Hank and Anne.

…we still need such a team at times in one sense…

As I have become more involved with both the patient and caregiver communities over the last few months, I’ve come to realize how many faces are attached to this form of cancer. Each has a unique and tragic story that needs to be told and cherished and remembered. It is, at times, overwhelming. Carcinoid/NETs patients come from every social class, every race, every part of the country.

Moving toward unity

But our voices are too often solitary, too easily ignored. We are often the only people within miles who have even heard of the disease, let alone faced its consequences. Too often, we face doctors who know nothing of the disease and insurance companies who want to treat the disease as an annoying drag on their bottom line.

Each has a unique and tragic story that needs to be told…

But we are beginning to band together. There are multiple online support groups and increasing numbers of in-person groups as well. In them, we can see the beginnings of a movement that will increasingly pressure the medical community for increased commitment to research and treatment–and insurance companies for better access to what those doctors and researchers discover.

Time for a true alliance

For too many years, patients and caregivers walked a too lonely path. That is beginning to change. We need to do all we can to nurture that change. We–all of us–need to spend some time thinking about how best we can truly form an alliance to conquer carciNETs that others will recognize and listen to.

But our voices are too often solitary, too easily ignored.

We need a renewed vision that begins with patients and caregivers and ends with the death of this hideous disease.

–Harry Proudfoot

Chairman, Walking with Jane