All posts by walking with jane

Think about a death other than your own

Death, Grief, Jane

The impact of the living

When we think about death, most of us think primarily about our own death. If we think about it in terms of its impact on others, we think about whether we have provided for our loved ones sufficiently through insurance or inheritance, whether anyone will miss us, whether we have done anything worth being remembered for in the larger world.

…what the Hell do I do now?

But we don’t spend much time thinking about how our deaths will really emotionally affect the people who love us.  Part of it is most of us are pretty self-centered when we think about death—when we think about it at all. In the United States, we are almost pathological in our efforts to avoid death and avoid talking about it. More importantly, however, none of us wants to think about the psychic pain our deaths will inflict on those closest to us. Contemplating our own impending death is hard enough. Contemplating its true impact on others under those circumstances is beyond most of us.

The proper focus excludes us

Even if we know someone who is dying, our thoughts are rarely on those they are leaving behind. Instead, we focus on the dying person’s last days and hours. The soon-to-be-mourners wrestle with their coming loss in the sickroom, but largely try to put up a brave front for the soon-to-be-deceased in order to ease that person’s movement from life into death. We do what we can to ease that passage, telling them they will soon see the loved ones they have lost, that they are going home to the heaven they believe in, and we ply physicians and nurses with pleas to ease the dying person’s last hours with the latest concoctions of modern medicine.

…most of us are pretty self-centered when we think about death…

Then, the breathing stops, the heart shuts down, and the brainwaves vanish.

Every death is different

Sometimes the death is sudden. Sometimes it comes with agonizing slowness. Sometimes there is time to say good-bye—to say all the things you want to say to each other. Sometimes, there is only a phone call or a knock on the door, and all the things you wished you had time to say can never really be said.

We do what we can to ease that passage…

Whatever it was that animated the body is gone. The survivors make the necessary phone calls to the relatives and friends who could not be at the bedside. They write eulogies, finish the funeral arrangements, and prepare for the wake and the burial.

Ritual thinking, ritual words

Those rituals are supposed to give the survivors comfort. We go through the receiving line and offer our stock phrases: “I’m sorry for your loss;” “At least they are no longer suffering;” “I’m here if you need me;” “Anyone as good as they were has gone straight to Heaven;” “Call me if you need anything.” Some people bring food by the house in the immediate aftermath. Others send flowers or sympathy cards.

Sometimes it comes with agonizing slowness.

The night Jane died, I called her sister and father. I’d told them not to come to Boston on that last day because I wanted them to remember Jane as she was the last time they had seen her. In retrospect, that may not have been the right thing to do—but it seemed so at the time. I asked them to call Jane’s aunts, uncles and cousins.

And now you know

Then, I called my father. He had lost my mother just 10 months before after a long struggle with Alzheimer’s. “And now you know,” he said, “That there is nothing anyone can say to you that is going to make this feel any better.” That may sound cold and heartless, but it was the truest thing anyone said to me in the ensuing months—and somehow there was more comfort in that than in all the hugs and condolences that followed. My father was telling me the one thing I really needed to hear—that the bleak greyness that had crept around me for weeks and now shrouded everything, was not going to go away because of what people said to me, no matter how well-said or well-meant. Jane was gone—as my mother was gone for him—and nothing was going to bring her back to me this side of the grave. If I were going to live—really live—again, I would have to accept that reality and deal with it: there was nothing anyone could say. There were things they might be able to do that would help me get through what I was feeling, but the clichés of the receiving line—no matter how carefully crafted—would be of no use.

Those rituals are supposed to give the survivors comfort.

Strangely, I thought at the time, I felt pretty good in the immediate aftermath of Jane’s death—so much so that I apologized to her doctors and nurses for seeming so unaffected by it. But I had, finally, given her the dignified death she wanted—even if it had been delayed from the earliest moment it might have happened. I was proud of the way she had fought her cancer, proud of the way she had moved the hospital staff with her constant displays of love and courage, proud of the way we had held each other up. I was relieved that she was out of the agony and the soul-crushing embarrassments of the uncontrollable diarrhea she had endured. She was no longer in pain and had moved on to our garden home, where she would be cared for and loved and prepared for her next flight into this world.

Think about impact of different deaths

I have slowly come to realize that this is a normal reaction for those who lose a spouse or a parent to cancer or some other protracted death. We are relieved that their pain—and our own, born in having to watch their final struggle—has finally ended. They are at peace—and so are we.

I was proud of the way she had fought her cancer…

The death of someone we love brings a stunning shock with it that numbs our souls and our emotions for a time. It lets us function in the world long enough to get through the funeral planning and participation. It lets us stand at the head of the receiving line and talk with those who have come to say farewell. It let me serve as a pall-bearer to help carry Jane’s coffin to her grave, as I had once carried her across the threshold the day we were married. It let me convince everyone that I would be fine. I even had myself convinced.

I wasn’t fine

But I wasn’t fine—and I should have known I wasn’t fine. I should have known the moment I entered the empty house the night Jane died. The quality of the silence was different—different even from the silence of the times I had come home to water the plants and pay the bills while Jane was in the hospital. It was the silence of a house that no one lives in—a silence that can only be experienced and never really described.

I should have known by the way my body curled into a fetal ball in the extreme upper left corner of the bed—as far from where she should have been sleeping as possible.

I should have known from the way I aimlessly wandered the house the next morning—finding myself now in this room and now in that with no idea how I got there or why I was in that particular spot.

They are at peace—and so are we.

I should have known from the way I could not bring myself to open the bag of clothes we had taken to the hospital for her to wear during her physical therapy in the step-down unit—the bag of clothes that we had never opened.

I should have known from the way I could not open the plastic bag that contained the clothes she had worn the day she checked into the hospital for the surgery to replace the valves in the right side of her heart that her cancer had destroyed.

I should have known from the volume I played the music at to break the silence and fill my mind with something beyond the thought that she was dead and never coming home again.

There were a thousand other things that should have told me then—and in the days that followed–that I was not OK—and that I was never going to be OK in the way I had been ever again.

It is nothing…

I’ve lost both my parents. I know what it is to find myself an orphan at 62 years old. I know what it is to suddenly be the oldest person in my immediate family. I know what it is to stand over the body of my father’s corpse. It is nothing compared to losing Jane.

We lost Jane’s mother four years before Jane died. It was the most horrible death I have ever witnessed. She spent the last three days of her life suffocating from the effects of pulmonary fibrosis. It was like watching someone drown for three days and not being able to do anything about it. I know what it is to lose a mother-in-law who has adopted you as her own son. It is nothing compared to losing Jane.

I should have known…

I have lost students I cared about deeply—every teacher does. I have cried uncontrollably for those losses. But they were as nothing compared to losing Jane.

I have never lost a brother or a sister. I have never lost a child as a parent does. I don’t know what those things feel like. I may experience the first. I will likely never experience the second. Perhaps they are like losing Jane was for me. Perhaps they are worse.

What we say and what we do

But we don’t talk about any of these things until they happen to us. Even those who have been through them only talk with others who have had those experiences. And most only do so briefly. We are like soldiers who have experienced combat. We do not speak of it to the uninitiated.

It is nothing compared to losing Jane.

We have this bizarre belief that grief lasts a year, at most—that anyone who has grief that lasts beyond that needs professional help because that kind of grief is abnormal, at best—and unhealthy, at worst.

A different vision

I work with an online grief group that has a very different attitude toward grief. We say, “The deeper the love the longer the grief.” We talk about adjusting to the “new normal” that is never the same as the “old normal” even if we fall in love again and remarry. If we were given to laughing at ignorance, we would laugh at the idea that once around the calendar through all the firsts—the first Christmas, the first New Year’s, the first Valentine’s, the first birthday, etc.—cures grief and returns one to the person he or she was before their spouse’s death blew their world into smithereens that make the task of putting Humpty Dumpty together again look easy.

We have this bizarre belief that grief lasts a year…

Our experience is that often the second run through the calendar can be just as hard as the first. Perhaps it is because of the belief that after the first go-round everything is supposed to be normal, which raises our expectations too high to be met by the reality. I can’t say. I know only that I am facing my fifth Christmas without Jane—and that it still is not right, despite putting up a tree every year and decorating the house.

People think we’re fine

One of my neighbors lost her husband to a heart attack more than 15 years ago. She tells me she still has not healed from his death. My father died 54 months after my mother. He was still mourning her death when he died. My father-in-law, over eight years after his wife died, still has not recovered from her death—nor has he recovered from Jane’s. Neither has Jane’s sister.

I know only that I am facing my fifth Christmas without Jane…

Of course, we all look fine. We do the grocery shopping, keep our houses tidy, read the newspaper, watch television, go out with friends, work—some of us even date—though I haven’t yet. I even have two friends who have remarried.

But the world is different for all of us. We do not see the world in quite the same way. We do not experience things in quite the same way.

Experienced voices

When Jane was in the hospital, I ran into a younger couple whose experience was similar to ours in some respects. The husband had gone through serious heart surgery with a long recovery and poor prospects of success. He had survived—and more.

We do not see the world in quite the same way.

He spent 30 minutes telling me what Jane needed from me—and his perspective as a patient was invaluable. But when he went off to answer a phone call, his wife took me aside.  Her role had been what mine was now.

Our point of view

“Everything he told you is true,” she said. “But he was a patient—not the caregiver—not the spouse. Our experience is different from his—and different from you wife’s. They don’t know the things that we know—they don’t know the things that we experience. They have no idea how hard it is to be positive every minute we are with them. They just expect it—and get angry with us if we fail even for a second. He threw me out one day—said I clearly didn’t love him enough if I couldn’t stay positive.”

Her role had been what mine was now.

Her husband had survived, she told me. But there were times the doctors had told her things he never heard. It was a miracle he survived—and a miracle the stress had not driven her crazy. She told me to get out and walk for a while every day—even if Jane wanted me there every second. She told me I needed to eat whenever I could—and that I needed to eat as healthy as I could.

Actions have consequences

“You’re going to lose weight,” she said. “You probably already have.  You are putting huge stress on your body—and no matter how this turns out, you are going to get really sick yourself if you don’t take care of yourself. And after the hospital thing is over, no matter what, you have to keep taking care of yourself. You have to force yourself to laugh—no matter how miserable you feel. Go rent the funniest comedy you can find—and make yourself watch it. It will help you get through the aftermath.”

‘They don’t know the things that we know…’

She was right on every count. By the time Jane died, I had lost 20 pounds—over 10 percent of my body weight in less than six weeks. The night before Jane died, I realized I had stopped walking the way I had—I was using an old-man-shuffle to get around. I was 58 years old. And I couldn’t remember the last time I had really laughed.

Complications

Of course their situation was very different from Jane’s. He had faced one major, high risk, heart surgery. It had gone well. Jane’s heart had been much more badly damaged than expected. Her surgeon had to get creative to make it work—but he had succeeded. Jane’s heart was healing normally.

By the time Jane died, I had lost 20 pounds… 

But her cancer complicated her recovery. Unlike most cancers, her tumors came with the power to create any of the 24,000 hormones and peptides the body manufactures. Her tumors had settled on serotonin, a hormone that controls digestion, blood pressure, and respiration among other things. Any operation or physical stress can kick the tumors into high gear, creating what doctors call a carcinoid attack that crashes blood pressure and respiration while causing dehydrating diarrhea.

God is an elephant

And Jane’s heart operation was the first of three procedures we would have to have done—including, potentially, one that had never been done on a patient with her cancer before.

Jane’s heart was healing normally.

I am not a traditionally religious person. I think most views of God(s) are like the three blind men sent by their busy king to find out about the elephant. The first describes it as a great snake that blows out hot air. The second calls the first an idiot and says it is a great dusty wall. The third calls down curses on the other two for their clear ignorance, for the elephant, he says, is like a rope that ascends to heaven—and when you pull on it all this smelly stuff comes down and hits you in the head.

What no one tells you

But if someone asks me for proof of an interested divinity, I point without hesitation to that chance encounter in the lobby outside the sixth floor cardiac ICU one day in early December, 2010. Between the two of them, I learned some things I desperately needed to know that I had no idea I needed to know.

I am not a traditionally religious person.

There are lots of articles and books for patients about the challenges they face as they deal with cancer or heart disease or a host of other diseases. When you visit a doctor or surgeon, they will patiently explain what the procedures are they will do and how they will affect your body. But no one explains what your role as spouse/caregiver needs to look like. No one explains to you the emotional rollercoaster you are about to embark on. No one tells you just how murky the lines are when it comes to making life and death decisions about your unconscious love’s treatment. No one tells you anything except that you need to take notes, keep the list of questions that need to be answered and ask those questions when your other half—caught up in the breathtaking moments of treatment and confusion—forgets to ask them.

Then it all changes

We and the doctors and nurses focus on the patient—as we should.

And just about the time you figure out all the things you really need to know and do that no one has told you that you need to know and do, you turn from caregiver and assistant to chief mourner and executor. And no one tells you about any of that in advance, either.

There are lots of articles and books for patients… 

If you get lucky, a social worker comes to talk with you in your spouse’s last hours when all you want to do is hold her hand and whisper final words to her that will comfort her and guide her home. You are numb and torn by a range of emotions that includes anger, sorrow, guilt, and failure. There is no one there to take notes or ask the questions you should ask but don’t know you should ask—nor how to ask them even if you do. Maybe there are other family and friends there at that moment, but they are nearly as torn up as you are.

The question

And if you are like me, you look and sound competent and aware and healthy while every dream you had turns into insubstantial dust that gets picked up by the ventilation system and blown out over the city.

You are numb and torn by a range of emotions…

One thought kept coming back into my mind unbidden over and over again: I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?

I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?
I am too young to be a widower and too old to be a bachelor—what the Hell do I do now?

 

Death comes when it comes

Death, Grief, Jane

Death took us both

To everything there is a season, and a time to every purpose under heaven.

Jane-and-Harry died December 10, 2010 just before  8 p.m. EST in the Cardiac Intensive Care Unit at Brigham and Women’s Hospital in Boston, MA. Four years later, I still have not made peace with that fact nor been able to adjust to the reality of it in any but the most superficial of ways. Jane is buried next to her mother in a cemetery in Fall River, MA. The headstone that marks the grave still does not bear the date of Jane’s death.

I haven’t forgiven myself yet…

Jane was my wife for 21 years, three months and eight days. We knew each other for almost exactly four years before we married–and we knew the day we met that we were soul mates. But the knowledge terrified us both. We did not go on our first date together for two years after that first meeting. We were that afraid we would screw things up.

Saving each other from worse than death

I’d had six relationships before Jane, if you count kindergarten and one case of unrequited love in high school. I was the second person she’d ever been out on a date with, and her first boyfriend. I was 38 when we married. She was 35.

Jane-and-Harry died…

Jane told me several times that I had saved her life–but never more poignantly than the day before I took her to the hospital for her final battles against the cancer that eventually killed her. And I told her several times that she had saved my life–and my soul–over the course of our marriage–and never more poorly or awkwardly than on that day.

Joining two souls beyond Death

 

Our wedding vows consecrated our bodies as one flesh. Our souls were joined long before that event. We both believed we had lived many lifetimes together. We both believed–and I believe now–that we were destined to live many more in the future. And we both believed I would recover from losing her very quickly because of that belief. What, after all, is the passage of even 100 years in the lives of two souls who counted their existence in billions of years? In that scale of things, even lifetimes of separation amounted to no more than a business trip.

…I had saved her life…

We were totally wrong about that–at least from my perspective. Seven days from now, I will visit her grave on the fourth anniversary of her death. The pain is not less than it was the day she died. The quality of the silence in the house has not changed. The emptiness of the space in the bed next to me at night has not changed. The absence of her touch or the sound of her voice at any point during the day or night has not changed. The missing her has not changed.

Death and loss take no holidays

All that has changed is my ability to deal with those things. They are–on most days–less debilitating than they were. For the first year after Jane’s death, I don’t think I ever slept more than three hours a night. Going to bed is still difficult, but once there I sleep for 5-6 uninterrupted hours. When I do wake up, most nights, I can get back to sleep. I rarely dream of her last days in the hospital now. Instead, I dream about the better times or have conversations with her about what I am doing and what I’m thinking about doing next.

Our souls were joined long before…

But the tears still come with little or no warning. I was in the grocery store Monday, walking down an aisle. I was looking for candied fruit for the fruitcake we made every year. I reached to pick it up and maybe the colors struck me in just the right way, but my eyes were brimming up with tears. Later that night I was watching a scene from Gods & Generals in which Lawrence is talking to his wife–and there we were. The tears came down across my face.

What Death took

Jane and I were a couple in a way it is difficult to describe to someone who has not had that experience. It wasn’t that we finished each other’s sentences or dressed to match each other–we didn’t do either one. But even separated by the length of a school, we could be on the same page. I taught English and she taught AP Biology, chemistry and physics in the same building.

Going to bed is still difficult…

One summer, I grew a beard. I’d had one when I was younger, but Jane had never seen me with one except in pictures. She liked how it looked, but was not really in love with how it felt against her face in the end. Still, I kept it to begin the school year while we saw whether it would soften. My students were stunned by my appearance and wanted to know why I’d grown it.

A story without death

“Ms Dybowski and I had an interesting summer,” I dead-panned. “The CIA asked us to come back to work and go to Afghanistan to look for bin Laden. I grew the beard as part of my cover.” Now neither of us had ever been spies or undercover agents. Nor had we been to Afghanistan. Our knowledge of any of the languages there was non-existent.

High school students can be pretty gullible, but I really didn’t expect them to swallow that whopper whole. We maintained a certain air of mystery about our outside interests and our students knew we both had a dry sense of humor that could be missed if they were not paying attention. But this tale was way over the top.

One summer, I grew a beard.

Still, they weren’t sure whether to believe me or not. Instead, since several of them had chemistry with Jane the next block, they held their peace, certain they would get a straight answer from her. Jane knew nothing of what I had told them and could have laughed at their question. She didn’t.

“Were you and Mr. Proudfoot really in Afghanistan this summer,” they asked?

“Yes,” she replied with a straight face, “And let me tell you, those burkhas are itchy.”

I’d made the story up on the spot. I’d never discussed it with her. But her answer was psychically perfect.

It took us weeks to get our students to believe we’d been kidding–and some of them are still nor entirely convinced.

Couplehood

We knew each other that well because we never made major decisions about anything without talking to each other–and rarely made even minor decisions without discussion. It wasn’t that we didn’t trust each other or were incapable of making decision without the other’s input. Rather, we wanted to be sure we had considered all the angles on everything before making a commitment. We knew that we were smarter and more observant together than we were separately.

‘Were you and Mr. Proudfoot really in Afghanistan…’

For example, we looked at more than 400 possible houses before settling on the one I still live in. We had a checklist that included the dimensions of every room as well as the shape of the yard and the position of any trees on the lot. This house was a shell when we decided to buy it. We looked at light fixtures for days and discussed the pros and cons of each one in each room before making a decision. We did the same thing with the flooring, the cabinets, the exterior and interior colors. We studied grass seed and foundation plantings and landscaping–even lawn mowers and snow shovels.

Human work

There was no such thing as man’s work or woman’s work. We both cooked–though Jane was the better cook–we both cleaned, we both mowed the lawn and pruned the trees and shrubs. I did more weeding and vegetable gardening, perhaps, but only because I enjoyed doing it more than she did. She loved cross-stitch and other forms of needlecraft–which I have no facility with–and filled the house with examples of her work.

It wasn’t that we didn’t trust each other… 

On a hot summer afternoon, we would sit under the trees and read or write or work on some craft we loved. The majority of the ornaments on our Christmas tree are things Jane had created. We would work together on finishing a piece of furniture or designing a new flower bed. If one of us wrote something, the other would play editor.

To Hell and back

Sometimes we argued with each other. Sometimes we got angry with each other. One day, Jane was so angry she told me, “Go to Hell–And come back.” Then we both laughed. “Well, at least I told you to come back,” she said by way of apology. We might go to bed angry with each other, but by morning the fit would have passed. Before Jane’s illness, we spent just one night in different beds–and that was because I was out of town for a conference. We both hated it so much neither of us ever went on an overnight again without the other.

…no such thing as man’s work or woman’s work.

Yet we had very different interests we pursued without a second thought. Jane loved playing tennis. In the summer, she would play for two hours every morning with her sister. Sometimes she would get an invitation in the afternoon to go play doubles with three male teachers we knew. While I like watching tennis, it was never a sport I had much interest in playing–and what ability I had was so far below hers that it would spoil the game for her were I on the court. I had interests, birdwatching, for example, she found equally dull and excused herself from.

Great expectations

While we were both politically quite liberal, I was more of an activist than she was. We never discussed whom we voted for after the fact, though we explored every candidate and issue in detail together beforehand. Most of the time, I think, we agreed in the voting booth, but I suspect there were sometimes real differences we simply ignored. But those differences were more a matter of the pace of change than where we wanted things to end up.

‘…at least I told you to come back…’

We both fully expected to grow old together, gradually losing our physical and mental strength over time at about the same rate. Then we would die–if not at the same moment, then close enough to it that the other would not have too long a time before joining the other. We both come from long-lived families that tend to stay sharp and healthy into their 80s and 90s. We believed we would have 30-40 years together after retirement

The argument

Two nights before she died, we had a horrible argument that left us both angry and frustrated. It started when she told me she wanted me to help her into the bathroom so she could use the toilet. She’d been on bedpans and catheters since the operation that replaced the valves in the right side of her heart three weeks before. I had to tell her that I couldn’t–and that the nurses couldn’t–that moving her that far would risk pulling out the needles that were keeping up a steady drip of medication, risk pulling out the monitors. Getting her out of bed meant putting her in a lift–and that lift would not fit through the bathroom door.

Then she told me she wanted to go home–and I had to tell her she couldn’t–that she wasn’t strong enough and that she needed to go through rehab first. “You’ll be out of here right before Christmas,” I told her–as they had told us both earlier in the day. “Rehab will take until the first of  February–and then you’ll come home. We’ll go to New Hampshire for a week–like we planned.”

‘I want to go home,” she said. “I want to go home tonight…now. I want to sleep in my own bed.” Every sentence was a breathy rasp and a struggle–as every word had been since they had put in the breathing tube in her throat so they would not have to intubate her again. It was a combination of reading lips and trying to make out the words she had not yet entirely succeeded in learning how to form. The exercise frustrated us both at the best of times.

We both fully expected to grow old together…

I explained again why that couldn’t happen. She sank into a sullen silence, then returned to wanting to go to the bathroom. I went out to consult with the nurse about making that happen, knowing already that it simply was not possible. The nurse came in and explained it to her in much the same way I had already done. The explanation just made Jane angry at both of us–and even more angry with me.

The nurse left and I tried to distract Jane from her helplessness with a Celtics game. She liked watching basketball and previous games had taken her mind off her troubles before–but not tonight. She would not look at the screen. Instead she glared at me. I tried showing her a comedy, a drama, a sit-com. She glared at me. I tried a channel that was just music. I was angry now, myself. Still she glared.

I talked with her some more–explained why she couldn’t use the bathroom like she wanted, explained why she couldn’t go home yet. Her glare said, “You don’t love me; you never loved me. If you did, you’d get me out of this bed.”

Time out

Finally, I gave up. I walked out of the room for a few minutes to try to calm myself. It didn’t do much good. I wasn’t angry with her. I understood her frustration. I was frustrated, too. We’d been in the hospital for 26 days. I’d been sleeping on the fold-down couch in her room for 22 of those days. I wanted us both to go home, but knew that was still weeks away. I’d explained it all the best I could. The doctors and nurses had explained it the best they could.

‘You’ll be out of here right before Christmas…’

But we could get up when we wanted, use the toilet when we wanted. My world was limited, for the most part, to the corridors of the hospital. But her world was limited to what she could see from her bed and the chair next to it. She felt trapped and alone and there was nothing I could do to change any of that. I could be there every waking moment of every day, but just the fact I could get up and move without help was a painful reminder of what was denied her. It made me an alien to her at times–and it had to hurt.

That I couldn’t fix that made me angry–especially at myself. Not for the first time, I wondered if it would not have been better if I had let her go the first time she’d gone into a coma. Not for the first time I wondered if I made a mistake letting myself be convinced not to let her go when she had gone into the second coma. Logically, I had made the right call on both occasions. I know that now and I knew that then. Our mantra was, “So long as there is a fighting chance, keep fighting. When there is no longer a fighting chance, let go.”

Death’s doorstep

I took a deep breath and went back into the room. “We both need sleep,” I told her. “Do you want the TV off?”

She glared at me.

That I couldn’t fix that made me angry…

I turned away and lay down on the couch. I closed my eyes and tried to sleep. I opened them. She was glaring at me. “Go to sleep, love. You need to sleep.”

Every time I opened my eyes, she was glaring at me. Every time, I begged her to go to sleep.

Death’s truth

At 4 a.m., they came in to do the overnight x-ray. I left the room while they did it. When I came back in, I sat with her until the sun came up. Somewhere in there, she softened. She still wasn’t happy. But the edge of anger was gone. In retrospect, I think she knew she was dying–that the reason she wanted to go home was so she could die in her own bed.

By 10:30 a.m, she was in a coma again. At noon they told us there was nothing more they could do. That afternoon, we began planning to take her off the oxygen and the feeding tube and everything else so she could die the way she had always wanted to. But it would be in a hospital room and not at home.

‘Go to sleep, love. You need to sleep.’

I haven’t forgiven myself yet for that final argument, for not realizing what she was trying to tell me, for not sitting up that whole night with her holding her hand. I thought I was seeing one thing when something else entirely was happening.

Jane was 56 years and 23 days old when she died of a cancer her doctor had never heard of. Her death changed everything.

Count no man as happy until you have seen what death does to him--whether his own or that of the one he most loves.
Count no man as happy or noble until you have seen what death does to him–whether his own or that of the one he most loves.

Final thoughts on NET Cancer Month

NET Cancer Awareness Day/Month

Looking back

NET Cancer Awareness Month ends today in Massachusetts and Texas. It is 20 days since Worldwide NET Cancer Awareness Day. I’m not sure how many new people we’ve reached with those events–at least a few, I’m sure. But neither NET Cancer Day nor NET Cancer Month reached a fraction of what Breast Cancer Awareness did in October. Of course, we didn’t really expect to do that.

I can’t end death.

This year, thanks to improved diagnostic techniques and greater awareness, we will diagnose about 15,000 new carcinoid/NETs patients in the US. We will likely lose about 12,000 diagnosed patients again this year. That will leave us, as usual, with somewhere between 100,000 and 120,000 diagnosed patients wrestling with the disease on a day-to-day basis as the year draws to a close.

Where we are

We will end the year every bit as uncertain of how many people are actually living with undiagnosed NET cancer as we were at the beginning of it. All we really know is that there are more cases out there than we know about. We know that many cases of idiopathic right-side heart disease are likely caused by carcinoid/NETs, but how many cases that is remains a murky subject. Equally murky is the number of IBS patients who actually have NETs.

…we didn’t really expect to do that.

Nor do we know how many cases of NET cancer are missed because our diagnostic tools can’t reliably detect the disease. Nor do we know how many cases are missed because many primary care doctors don’t know to look for it–or how to.

Before and after NET Cancer Month

But things are getting better. In 2010, when Jane was diagnosed, there were two trials underway in the US. Jane qualified for neither. They were aimed at pancreaticNETs. Jane’s primary tumor wasn’t there. We had octreotide and its long acting form that might ease her symptoms and slow the growth of her cancer. In retrospect, they were like trying to put out a five alarm fire with a fire extinguisher.

…there are more cases out there than we know about.

Today, we have more than a dozen trials underway in the US–and new ones coming online after the new year. At least one of those new trials will try immunotherapy–an idea I will write about at length in December. Early results from other cancers have provided some spectacular results, especially in pediatric cancers, melanoma, and prostate cancer. Whether those results will be duplicated in carcinoid/NETs patients remains to be seen, but there does seem cause for hope.

Better Diagnostics

Ongoing efforts testing Gallium-68 scans as a diagnostic tool for carcinoid/NETs also seem promising. Neither that nor the weaker but now accepted octreoscan existed when Jane was searching for answers to her ongoing diarrhea and gas. PRRT treatment trials are continuing, with more and more cancer centers able to provide access to that therapy that is widely used in Europe.

But things are getting better.

Research funding remains a critical issue. Neither government nor drug companies are much interested in financing the basic research that treatments spring from. I am not, by any stretch of the imagination, a wealthy man. Jane and I were school teachers–and even by the standards of school teachers, we were not particularly well-paid. But I know how important basic research is to any endeavor.

The personal commitment

Four years ago, I pledged I would personally donate $100,000 to the research effort at the Dana-Farber-Cancer Institute’s Program in Neuroendocrine and Carcinoid Tumors over a five-year period. So far, I have fulfilled $85,000 of that pledge. In addition, I have personally raised another $46,000+ through the Boston Marathon Jimmy Fund Walk over the last four years. This year, our Caring for Carcinoid Walking with Jane, Hank, and Anne team raised over $67,000–bringing our team total for the Marathon Walk in the three years I have served as captain to over $100,000.

Research funding remains a critical issue.

I have to admit to being greedy–greedy for a cure for NET cancer. Five days ago, I set up the team page for our new Jimmy Fund Walk team: NETwalkers Alliance. Our current, published, goal is to raise $80,000 this year. But I, personally, want us to raise nearly as much money next year as a team as our team has raised in the previous three years combined: $100,000. To do that, I’ve managed to convince the Jimmy Fund to let us use their logo on our team Facebook page and set up some meetings with the leaders of one of the more successful PanMass Challenge teams to learn from them how they do what they do.

Piloting the future

The researchers at Dana-Farber need the money. But so do researchers at NET cancer research programs around the country. I hope that what we do with the NETwalkers Alliance can become a pilot for other programs and small foundations working on carcinoid/NETs across the country.

I have to admit to being greedy…

We need to create reliable fundraising vehicles across the country everywhere people are doing reputable research on NET cancer. We need to be as open source about our fundraising techniques as many cancer researchers are becoming about making their research available to other researchers.

Stealing an arrow

Jane gave the last months of her life to helping researchers learn as much as they could from her disease-riddled body. It was a conscious decision. Since her death, I have put my financial, physical, mental and emotional resources into that fight. I will continue to do so until we have both reliable ways to diagnose the disease and a way to cure it. I know what it is like to sit by a loved ones bed as they die, knowing there is nothing you can do but hold her hand. It is the most awful feeling in the world.

The researchers at Dana-Farber need the money.

I can’t end death. But if I can help take an arrow or two from his quiver–especially an arrow that causes such a wasting and painful death–I will do whatever it takes to do so. I hope you will join me in that quest.

What is the price of victory? I don't care, so long as we get there.
What is the price of victory? I don’t care, so long as we get there.

Thanksgiving memories

Grief, Holidays, Jane

Awakening

I awoke alone in a hospital room on Thanksgiving morning four years ago today. I didn’t know what kind of day it would be because I didn’t know if Jane had survived the night. Her doctors had sent me off about midnight as they tried to calm her down. My very presence seemed to upset her.

…it is easy to forget that there is good in the world…

Jane had emerged from the first carcinoid attack two nights before following a 33-hour coma. She’d initially been angry to find I’d allowed them to intubate her but understood after I explained to her why I’d agreed to it. She insisted it come out as soon as they could do it and–against the advice of the hospitalist–it had come out Tuesday night.

The night before

But Wednesday, she’d become increasingly agitated. She tried to pull out the monitoring and medication lines and became violent when we stopped her. Her blood pressure, heart rate and respiration rose and fell like the stock market and a particularly volatile day. I tried to talk to her–to calm her down–but no matter how soothing I tried to be, everything I did just upset her more.

My very presence seemed to upset her.

I was doing no good and was, myself, becoming more and more frustrated. In the back of my mind the chorus of voices kept reminding me that I should have let her go Monday morning. I hadn’t–and this was the result. They had put Jane in restraints, but her body was still thrashing around in anger as they took me down the hall.

Sleepless in Boston

The doctors and nurses promised they’d come get me if they needed me or if things took a sudden, fatal turn. I tried to sleep, curled in a fetal ball on the too small bed in an alien space. I knew that if they came for me I needed to be able to make good decisions–knew I was too tired and frustrated to make them.

They had put Jane in restraints…

I didn’t sleep well, but I slept. They hadn’t come for me in the night. But that didn’t mean the situation had changed in a positive way, either. She might still be agitated and angry this morning–and part of me did not want to see that. I stared out the window for a few minutes, steeling myself for the worst.

Jane’s last Thanksgiving

Finally, I opened the door and walked down the hall. There were still people in the room with her but they were all calm. Jane was no longer in restraints. She turned her head as I came in sight of the door.

They hadn’t come for me in the night.

“I love you hubby,” she said as she saw me. She was wearing the biggest grin–the grin she used when she was really happy–the grin she had on our wedding day as we walked down the aisle and out of the church.

Then I was hugging her and all was right with the world.

Thanksgiving visitors

We arranged for Jane’s father and sister and a couple of friends to come visit that afternoon. Jen Chan, her oncologist, came by in the morning–having put the Turkey in the oven and leaving her husband in charge of it and her children–just to visit. It was the best Thanksgiving Jane and I ever had–even if all we had to eat together was a cup of broth for her and a bowl of pumpkin soup for me.

‘I love you hubby.’

It was also our last Thanksgiving together. Fourteen days later she would go into a coma for the last time. Thirty hours later her heart would stop and she would draw and exhale her last breath.

Giving thanks

I am thankful for that day, for all that the memory of it inflicts such pain now. I am thankful for most of the two weeks that followed–though there are moments in those two weeks I would like to forget. Her calm bravery still inspires me.

It was also our last Thanksgiving together.

But the Thanksgivings since have been empty exercises. I bake bread in the morning, as Jane once did, using Jane’s recipe. I’ll bake a pie this year, I think. I go to dinner, watch football, talk with Jane’s sister, aunt and cousins. This year, I’ll visit Jane’s father in a rehab facility if they don’t parole him for the day.

Thanksgiving pain

I’ll come home, at last, to the emptiness of this house. The remnants of the love we built here will try to console me but the silence will engulf everything. I’ll watch Miracle on 34th Street or It’s a Wonderful Life and they will drive the darkness back until I can sleep.

…Thanksgivings since have been empty exercises.

In the morning, I will decorate the house for Christmas. I’ll remember the years we did that together and be thankful I have those memories, be thankful I have the ornaments she made to hang on the tree, be thankful for all the blessings that remain from our 21 years, three months and eight days of marriage.

Reclaiming Thanksgiving

And I’ll be thankful for the friends who’ve helped me endure these four years of grief and who have helped me find ways to help others. I’ll be thankful for the roof over my head and the food in the pantry. I’ll be thankful for the doctors and the nurses who are still out there fighting injury and disease and for the researchers trying to find the answers not just to Jane’s cancer but to all the other diseases human beings endure.

…I will decorate the house for Christmas.

In grief and pain it is easy to forget that there is good in the world–and that the authors of that good are often other people like ourselves: mere wounded souls who yet hold candles in their hands to light the darkness regardless of the wind.

Happy Thanksgiving to you all.

Pax et lux,

Harry Proudfoot

Walking with Jane

I'm thankful for everyone who has walked with us and worked with us to end NET cancer. We will kill this thing, together.
I’m thankful for everyone who has walked with us and worked with us to end NET cancer. We will kill this thing, together.

Death I should have let happen

Death, Jane

Matters of life and death

Today is the day I should have let Jane die four years ago. Death that day would have been, in retrospect, better for her. It might have been better for me. But it would not have been better for our knowledge of carcinoid/NETs. It would not have been better for those who took life-lessons from her struggle. It would, arguably, not have been better  for patients.

…Death was in the room with us–and I knew it.

The weekend before had been difficult. Jane had suffered from massive diarrhea as the food she was finally able to eat passed through her almost as quickly as she could eat it. I helped change her gown and the filth laden sheets after nearly every episode–though twice I had gone down to the cafeteria for food for myself and found myself locked out while they cleaned her up.

Psychosis in the ICU

She also lost her mind for long stretches of that weekend. She asked me to eat my meals in the room because, she said, she thought the doctors and nurses were trying to kill her. She lied about her physical therapy and said her doctors had told her not to do it–that she didn’t have to. She was angry and terrified and, sometimes, a complete stranger to me. There were times I was not sure she knew who I was.

Today is the day I should have let Jane die…

One of her doctors told me she was suffering from what they called ICU psychosis–a thing that is not uncommon among patients who  are trying to shake off the lingering effects of the sedatives used during extended surgeries and begin feeling trapped in a small bed. Certainly, that was possibly part of what was going on. I know I was terrified and working hard to keep it out of my face and out of my voice.

Death enters the room

I was up with her much of Sunday night into Monday morning and she seemed to be calming down. I held her hand and talked soothingly to her until the day nurse came on at 7 a.m. I went out in the hall to tell her what the weekend had been like. She said she thought the idea of ICU psychosis might be wrong–and that I should be prepared for the possibility Jane might not make it. She saw a marked deterioration in Jane since Friday.

There were times I was not sure she knew who I was.

That this might well be the end had been in my mind all weekend. I knew diarrhea like she was having could not be sustained for long. I knew her blood pressure and respiration were fluctuating wildly. I told the nurse I would not sit in on rounds that morning–that I would stay with Jane instead. It was my habit to listen to the reports on Jane each morning and to understand the plan for the day in the week since her surgery. I felt like I was more a part of the team that way.

Staving off Death

I went back into the room. Jane was sleeping. I took her hand. She opened her eyes and looked at me, then closed them again and focussed on her breathing. I breathed with her. “Breathe with me and stay with me,” I repeated over and over in time with her breathing. I was dimly aware of the doctors, nurses and medical students talking in the hallway.

…she seemed to be calming down.

“Breathe with me and stay with me,” I chanted. The medical group moved down the hall to the next patient. “Breathe with me and stay with me.” Then her breathing caught and stuttered. I should have just continued to hold her hand. I should have said nothing and done nothing and let her slip away just after 9 a.m that Monday morning.

Death’s exit

But I didn’t. In a calm, un-panicked voice I called into the hallway. “Something isn’t right here.”

Then her breathing caught and stuttered.

Then the room was filled with doctors and nurses and they were pushing me behind a curtain so I couldn’t see what was going on. I hated that–but then the hospitalist was there asking about intubating her again. He said that would buy them a little time to figure out what was going on–and if they couldn’t fix it, they could always take it out again.

Conversing with hope

“Give it a few hours,” he said.

“A fighting chance,” I asked?

…they could always take it out again.

“A fighting chance.”

‘The moment it isn’t, you’ll tell me and we’ll end this?”

“The moment it isn’t, I promise.”

The end of the first death

We pulled her back from the edge of death. She spent 33 hours in a coma before the steady drip of octreotide brought her back to consciousness at 6 p.m. Tuesday night.

‘The moment it isn’t…’

You think about a lot of things when the person you love most is unconscious and you don’t know if they will ever wake up again–or what they’ll be like if they do. I sat by her bed. I held her hand. I talked to her. I watched the news with her. I sang to her. Somewhere in there I slept a little, I think. I know they sent me off to eat a couple of times. The memories are fuzzy.

I should have let her go

I never stopped believing she was coming back. I never stopped believing she was going to heal. I never stopped believing she would beat her cancer and all the damage it was causing. But Death was in the room with us–and I knew it. And I should have let her go with him–no matter how much it changed the future.

The memories are fuzzy.

But I didn’t. I didn’t know what I didn’t know. And the world is a different place because of that.

Would I be doing something different if Jane's death had happened today instead 18 days from now? Would people have died who are alive today? Would I be different? Would you?
Would I be doing something different if Jane’s death had happened today instead 18 days from now? Would people have died who are alive today? Would I be different? Would you?

Jane on her last birthday

Jane

Jane’s birthday present

Jane and I were celebrating her 56th birthday in her room in the ICU at Brigham & Women’s Hospital in Boston four years ago today. She was recovering from the heart surgery done two days earlier to replace the valves in the right side of her heart. She joked with the doctors and nurses that she’d gotten a new heart for her birthday–and that while she couldn’t have ice cream and cake today, she was looking forward to it when she could finally eat again.

The fight goes on–and we will find a way to win.

I had come in from the hotel I was staying at early that morning. There was a joy in my step. Jane’s recovery was a little behind where it would be for a normal heart patient, but right on schedule for one whose heart problems were caused by carcinoid/NETs. Our original plan had been for me to go home Wednesday night after they moved her to the step-down unit for rehab, but the decision about was coming later than we had hoped. I’d arranged to stay on at the hotel through Friday morning.

Preparing for the move

After rounds, they decided they would move Jane to the step-down unit late that day or early Thursday. It was simply a matter of waiting for a bed to open up. They would finish weaning Jane off of oxygen and the drugs they were pumping into her over the course of the day to get her ready for the transfer. The physical therapy people arrived in the afternoon and worked with her as they had the day before. Jane had been following their directives faithfully–almost obsessively–ever since they left Tuesday afternoon.

…she’d gotten a new heart for her birthday…

Dr. Couper, her surgeon, came in and said her heart was healing normally. Jen Chan, her oncologist came in to check on how Jane was doing. Her cardiologist, Javid Moslehi, came by as well. Everything seemed to be moving in the right direction, so much so that they started turning the monitors off about 2 p.m.

Our birthday nightmare

The night nurse came on at about 7 p.m. She ran through her checks and asked for a pulse-ox measurement. From that moment on what had been a happy birthday filled with hope went sideways. Jane’s pulse-ox was down in the 88-90 percent range. Everything else looked fine, but that pulse-ox was way below where it should be in a healthy human being. We didn’t know it then, but Jane was in the midst of the first of the four carcinoid crises that would ultimately kill her.

Everything seemed to be moving in the right direction…

Jane’s tumors were producing serotonin. Serotonin controls lots of different things, including respiration and blood pressure. Drop those very far outside the human norms and you simply won’t have enough oxygen in your blood stream to keep your body happy.

Sleepless in the ICU

I stayed with Jane all night, save for a road trip she made to another building in the hospital where they still had a scanner manned. I’ve rarely been more frightened in my life–but I pushed the fear away. I knew I had to stay sharp and–as her nurse said to me–there was no need to panic unless the nurse panicked–and she wasn’t going to.

…a happy birthday filled with hope went sideways.

It was a sleepless night for both Jane and me. Sometime the next morning, they got things under control again–but all thought of a transfer to the step-down unit was gone. I went back to the hotel and slept for a few hours that night. It was a fitful sleep. It was the last night I wasn’t in the room with her–and the last time I would leave her other than when the nurses threw me out to get something to eat or to spend time away from the hospital for an afternoon.

The carcinoid riddle

The riddle of her recurring carcinoid attacks has never been scientifically resolved, as far as I know. I suggested the day before Jane died that it seemed like every time she started physical therapy again, an attack followed within 24 hours or so. I’m convinced that isn’t a coincidence–that when the body started calling up the hormones needed to rebuild her muscles, the tumors got the same message and started kicking out large quantities of serotonin that suppressed her respiration and blood pressure.

I stayed with Jane all night…

 

Her doctors told me at the time I might be right. And I know the protocols for carcinoid heart surgery patients have changed somewhat based, in part, on what they learned from Jane’s experience. At least that’s what they have told me–and that other patients have benefited from that knowledge.

A fighting chance

I take consolation from that. Jane and I both knew we were sailing into terra incognita. We both knew there was no other chance of changing no hope into a fighting chance for us–or for anyone else. We weren’t bargaining with gods or anyone else. We were just doing what we had spent our lives doing: fighting against long odds for the greater good.

…other patients have benefited from that knowledge.

Happy birthday, my darling. The fight goes on–and we will find a way to win.

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

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

One month from four years

Jane, Uncategorized

What’s in a month?

I did something I have not done before yesterday. I was at a craft fair running a booth for Walking with Jane and carcinoid/NETs awareness–which is nothing new. I take every opportunity I can find to talk about carcinoid/NETs and raise money for the research I hope will finally find a cure. But someone asked me yesterday how long ago Jane died and I told them it would be four years the tenth of next month.

It measures time, not healing.

Usually, I speak of her death in terms of how many months have passed. Actually, the clock in my head knows to the day how long I have lived without her–and if I am near a clock, I can state it to the hour–sometimes to the minute–without working up a sweat. As I write this on Sunday afternoon, in preparation for NET Cancer Awareness Day tomorrow, Jane died precisely 46 months, 29 days, 18 hours and 29 minutes ago.

The tenth of every month

People out in the world who are not widows and widowers look at me like I’m crazy when I state things that precisely. Those who are, nod their heads knowingly–as do, I suspect, those who have lost children. There are, ultimately, two kinds of people in the world: those who have experienced soul-shattering loss and those who have not. And I would not wish the experience on anyone.

…Jane died precisely 46 months, 29 days, 18 hours and 29 minutes ago.

I still visit Jane’s grave every Saturday, every tenth of the month, every anniversary, birthday and holiday. I still can’t believe that she is dead–even though I know she is. The evidence is all around me every day. It is there in the silence of the house, in the solitary meals, and the empty bed at night. She is the last thing I think about at night and the first thought I have every morning.

The silence of the month

My mind escapes loss for hours at a time if I am out with other people or working on a project that requires my full concentration. But friends know that in the midst of a party or social event that a grey mist will suddenly envelop me. I will move away from the crowd and find a quiet place to sit alone for a few minutes. It happens most often when I am out with a group of couples. Suddenly, I am totally aware of what they have I don’t–and who is not waiting for me at home.

I still visit Jane’s grave every Saturday…

I have struggled for nearly 47 months to find words or analogies to explain what this is like. One day last week I realized I was waiting for the refrigerator to come on to break the silence in the house–that sometimes I hope for the heat to come on for the same reason. That is how desperately empty my life has become if I let myself think about it. And I can’t imagine how depressed and crazy I would be without the work I do here and at craft shows and meetings and the 10,000 other things I fill each month with.

One month from today

Still, I am better than I was 47 months ago. I am better than I was 46 months ago or 45 months ago. I don’t remember much of anything about the two years after Jane died beyond the grinding emptiness and despair that formed a damp cloak around every waking minute–and every sleeping one as well. Fall remains a difficult time, full of unfulfilled dreams and daily nightmares that keep me from wanting to sleep. It hurts too much.

My mind escapes loss for hours at a time…

One month from today, four years will have passed: four years alone at Christmas, even with my family around me. Four years of single midnight toasts at New Year’s. Four years of waking up alone and gift less on Valentine’s Day and my birthday. Four years without fireworks on July Fourth. Four years spent in the cemetery on our Anniversary. Four years of greeting the trick-or-treaters alone with no one to share it. Four years of catching myself looking for birthday and Christmas presents for her. Four years without the smell of her baking on Thanksgiving morning. Four years of not making fruitcakes together. Four years of empty silence.

What is a month?

I want to believe the fourth anniversary of her death will bring the peace the first three anniversaries have not. From a month away, it doesn’t look likely. There is no magic in the date. It measures time, not healing.

One month from today, four years will have passed…

Change is incremental and does not run like a clock. Healing is the same–even from grief.

Jane would turn 60 this month. It makes me cry when I think of it.
Jane would turn 60 this month. It makes me cry when I think of it.

 

NET Cancer Social Mediathon 2

Social mediathon, Uncategorized

6 a.m.EST

Good morning from the East Coast of the United States and welcome to the Second Annual Walking with Jane Social Media Marathon. My name is Harry Proudfoot, president of Walking with Jane, a small foundation I created after my wife, Jane, died of carcinoid/NETs less than four months after being diagnosed with the disease.

For the next 18 hours I’ll host what I hope will be a long conversation about the NET cancer experience for patients and caregivers, as well as about research and treatment. The day will include interviews with doctors, researchers, and people raising money support their efforts. We’ll also have posts from a number of patients and caregivers.

But when I first conceived of the Social Mediathon 20 months ago I wanted it to be more interactive than the telethons and radiothons everyone is familiar with. I hope you’ll be inspired to bring your own voice and your own experiences with the disease to the table. I hope those of you who are encountering this disease for the first time will ask questions about the disease and how it works and what people will experience.

Part of what today is about is reaching out to the larger world and trying to get people to pay attention to this little-known and poorly understood form of cancer. It is considered a rare disease–and at first glance, that appears to be true. But we really have no clear indication of how widespread this disease actually is.

We know we have about 120,000 diagnosed people living with the disease in the US. Five years ago, we were diagnosing about 10,000 cases a year. But as our ability to detect the disease has improved, that number has increased markedly. This year, according to speakers at a Caring for Carcinoid research conference in Boston, we expect to diagnose 14-15,000 new cases of the disease.

As new methods of diagnosis become increasingly available, we can reasonably expect those numbers to continue to increase. While no doctor will commit to a specific number, some evidence suggests there could be as many as 3 million undiagnosed cases in the US right now.

Several years ago, well before Jane and I had ever heard of NET cancer, a group of people concerned about NET cancer decided carcinoid/NETs–yes, we have lots of names for the same disease–well talk about that later–needed its own awareness day. They settled on November 10 for Worldwide NET Cancer Awareness Day. That group serves as the organizing committee for the events that are happening across the globe today. This would be a good time to go check out their website.

There is a wide range of activities going on out there today–as well as some activities you can take part in from the comfort of your own home–including this Social Mediathon.

6:30 a.m

We’ve had the morning’s first technical glitch. The opening post was supposed to put itself up at 6 a.m. while I had breakfast. It didn’t happen, so we are a bit behind the curve. I think that’s all straightened out at this point.

While we are on the subject of things technical, let me give you the list of places you can get access to these posts today. You can, of course, see everything as it happens at walkingwithjane.org. We are also on Facebook, Google+, and Tumblr. I will also be live tweeting as we go at @Harry Proudfoot. I have a Pinterest, but really haven’t a clue what I am doing there. I may eventually figure it out today.

If you want to share these posts, please feel free to do so. Today is about spreading the word beyond the zebra herd.

6:45 a.m.

In order to understand what makes carcinoid/NETs so difficult to detect, we need to talk a little bit about how the disease works. I will keep this pretty simple, knowing that for some of our audience this is new ground.

Neuroendocrine tumors–that’s what the NET stands for–can form anywhere in the body. Usually, they form somewhere that excretes hormones or peptides–but they don’t have to. The primary tumor generally stays pretty small. Most never get much bigger than the size of a lentil–and they don’t show up well on most scanning methods. In Jane’s case, the primary tumor looked like an imperfection in the scan in the area around her appendix.

But their small size doesn’t make them less dangerous. The primary tumor can play mother to dozens of equally small tumors scattered throughout the body. And when a tumor begins growing in the liver, it can get quite a bit larger than a lentil–doing severe damage to the liver in the process.

And just to further complicate matters, the tumors can manufacture any of the more than 24,000 hormones and peptides the body produces. Those extra hormones can play hoy with the body’s internal chemistry in lots of different–and unpleasant–ways. Jane’s tumors produced an abundance of extra serotonin–a hormone that controls blood pressure, respiration, sleep and digestion. She suffered from constant diarrhea and insomnia. She dealt with the effects of low blood pressure–she could pass out just from standing up too quickly. Her rapid digestion of her food meant she was not getting as much nutrition from her food as she should have been getting. That left her rail thin. She suffered excruciatingly painful bloating and gas that further exacerbated that problem because she often didn’t feel like eating.

At the time, we had just one test to detect excess serotonin–a 24 hour urine test. Today, we also have a blood test, but it is not quite as reliable as the urine test. But at least we have a test. For the vast majority of 24,000 hormones and peptides, we have no tests at all. Even if we did, testing for all 24,000 is not something any doctor would order. And some NETs appear to produce no hormones at all.

One of the Holy Grails of carcinoid/NETs research is finding a reliable and simple way to test for it. We don’t have one yet–but we are working on it. We are also looking for new ways to use radiation to spot the tumors. The best we have in general use right now is called an OctreoScan. But a new method using gallium-68 is in the trial stage and shows great promise for some tumors.

Last year, I sat down with Dr. Matt Kulke and Dr. Jennifer Chan at the Dana-Farber Cancer Institute in Boston to create a video on frequently asked questions about NET cancer. You should go check it out on YouTube now.

You can also read more about the symptoms of Jane’s form of the disease in this pamphlet I wrote with Jen Chan.

7:44

I promised we’d hear from people other than me today–and this seems like a good time to bring in a patient. Michelle Sieman is one of the first people I “met” as I was setting up Walking with Jane in the Summer of 2011. We talk online with some regularity but have never actually met in person. She lives in Pittsburgh PA, the city I grew up in. She was diagnosed with lung carcinoid 2011.

Michelle Sieman

How would you feel if your doctor told you… “Well, if you had to get cancer, this is the one you want.” or “You’re one of the lucky ones… yours doesn’t usually spread.” How about, “Well, it IS cancer… but not like “normal” cancer.” WTF does that even mean?!?

Think about that for a second… “it IS cancer… but not like “normal” cancer”. Really? Exactly what is “normal cancer”?

I’ll bet most of you have never even heard of Carcinoid Cancer… I hadn’t either… Until my diagnosis came in September 2011 (as if that year wasn’t bad enough already!). Today, I live in fear. Fear that one day I will hear those words again (even though they’ve said I’m cured). Fear, because some in the medical community are so arrogant that they would rather misdiagnose a disease than think outside of the box. Fear, because medical professionals are taught to look for horses… not Zebra’s. Fear, because CANCER IS CANCER and THEY should know that by now!!

If those doctors had looked for the Zebra, perhaps Sunny Jennings Carneywould be sitting on her back deck watching her boys play b-ball today (they told her she was cured too! Go live your life they said… don’t worry they said…)… perhaps Harry Proudfoot would be Walking with Jane… through their gardens… (Jane’s Carcinoid was also missed until it was beyond help)… perhaps I wouldn’t have an anxiety attack every time I have a new “twinge”…

It’s shameful how true this is… neuroendocrine cancers ARE rare… Doctors DO treat you like you’re an idiot (most times because you are more informed than they (having said that, I would like to thank the Doc’s who actually listen to us))… Answers are HARD to find… and most importantly, what knowledge is available will SCARE THE CRAP OUT OF YOU! No one can answer your questions, no one can tell you what’s going to happen next… and sometimes it seems that NO ONE wants to know.

8:02 a.m.

Michelle is right: When you start to learn about NET cancer, it will scare the crap out of you. I’ve been around a lot of cancers over the course of my life. I’ve sat with people going through chemotherapy in the primitive years and held their hands while they were puking their guts out. I’ve walked people to the end of lung cancer, ovarian cancer and breast cancer. I’ve seen bone cancer, liver cancer, testicular cancer and brain cancer. I am, I sometimes think, a cancer magnet.

But I have never seen a cancer as awful as carcinoid/NETs. Doctors who have only read about the disease will tell you it’s slow-growing–and that that is a good thing. They haven’t seen what it does to the quality of your life–and the quality of he life of your family. There is a piece I wrote last year where I tried to explain how this disease kills.

I’d like every doctor to read this. And I’d like all of you who have not been through the disease to read it as well. It explains what patients go through–and patients tell me it does so pretty well. I have a stronger one, but I can’t find it.

8:41

As always happens on one of these–especially early in the day–I am having trouble keeping up. A few minutes ago, the walkingwithjane.org site received the following comment:

Lucy Wiley2m

We have many problems with NET. Nobody knows about it or how to treat it; we have treatment options but some of the best ones are not available for lots of reasons; our major organizations exist mainly to perpetuate themselves. The twin evils of pharma and insurance literally hold the powers of life or death over us.Our biggest problem is we have no voice. Nobody speaks for us in state or national arenas. Any gains we make will ONLY happen when patients demand to be heard. For that,you don’t need money. You need dedication, organization and a soapbox. Thanks, Mr, Proudfoot, for providing a place to speak out.

 

Lucy is right. We do need to develop a soap box or two to get people to understand what this cancer is and why it matters. I may disagree with her about the money side of things–research is going to cost more than a little since big pharma rarely supports the basic research we need to have done to find a cure. They’ll support drug trials when they are fairly sure there is going to be a profit in it–but not much before that.

Government grants face the same problem: show us that you are fairly certain to produce something we can immediately use and we might show you the money. Ninety-five percent of solid research proposals never find funding. So money is going to matter.

But if no one knows or cares what patients are looking at–outside of the patients, their families and a relative handful of doctors and researchers–then nothing is going to change. Today is about raising awareness.

I hadn’t planned to send you off to read this next piece until this afternoon. But it fits in here perfectly.

There is no cure for NET cancers that are not detected very early–so early that they are discovered by accident. I encountered a young woman in 2011 who is one of the lucky ones. She went to the hospital for an appendectomy. During the operation, they discovered a NET in her appendix. It was the only one there and they took it out. There’s a good chance she won’t have to deal with NET cancer again.

But most patients aren’t so lucky. This spring I got a note from a young woman in Canada. Her cancer was pretty advanced. She didn’t want information about potential cures. She wanted to know how to prepare her husband for her death. I wrote this piece in response about Jane’s last months and how we prepared for her death.

9:13 a.m.

Looking at the analytics, we currently have an audience of over 300 people–not bad for just after 9 a.m.

But this is supposed to be an interactive project. Last week, I asked people on Facebook to replace their profile picture with something Zebra for today. That does not seem to be happening in my neck of the woods–at least not yet.

If you’d like to join the zebra herd for the day, go to netcancerday.org and download their zebra ribbon. Then update your FB page by replacing your current profile with it. Thank you.

9:24

I have to go off for a while. An emergency has come up. I will be back as soon as I can.

10:41

Have I mentioned lately how much I hate FRACKING CANCER!

10:54

Dr. Jennifer Chan was Jane’s oncologist. She is the director of clinical trials for the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute in Boston. She also became a good friend to both Jane and me during Jane’s illness–and has remained a good friend to me since Jane’s death.

Jen is in clinic today but she did respond to some written questions I gave her about NETs and where we are on diagnosis, treatment and research. Because she is in clinic seeing patients today, she is not available for follow-up questions here.

  1. What is NET Cancer? How is it different from other cancers?

Neuroendocrine tumors are a relatively rare and diverse form of cancer that arise from neuroendocrine cells that are located in multiple sites of the body, including the gastrointestinal tract, lung, and other organs. They are characterized by variable but often indolent (or slow-growing) behavior.

One important factor that can affect prognosis is tumor grade. Grade is an assessment of the tumor that takes into account markers of cell proliferation seen by the pathologist on a biopsy. Tumors can be categorized as low, intermediate, or high grade. Low-grade tumors are slow-growing, whereas high-grade tumors are faster-growing.

Neuroendocrine tumors are unique because of their ability to secrete hormones. Most neuroendocrine tumors are non-functional tumors, which means that they are not associated with symptoms from hormone secretion. However, some neuroendocrine tumors (10-30%) produce hormones. Symptoms that a patient experiences will depend on which hormone is produced.

  • Neuroendocrine tumors, particularly ones that start in the small intestine or appendix, can produce hormones such as serotonin, which leads to symptoms including flushing or diarrhea. These symptoms are referred to as carcinoid syndrome.
  • Some pancreatic neuroendocrine tumors can also produce a variety of hormones such as gastrin, insulin, glucagon, vasoactive intestinal peptide, somatostatin, and ACTH.

 

  1. Why is it hard to diagnose? What symptoms should serve as red flags for patients and primary care physicians?

Neuroendocrine tumors can be difficult to diagnose because many of the symptoms are non-specific and can be associated with many non-cancerous conditions. Because neuroendocrine tumors are relatively rare, a diagnosis of neuroendocrine tumor may not be considered.

Neuroendocrine tumors are also hard to diagnose because there is not a widely available screening test, such as mammogram for breast cancer or PSA blood test for prostate cancer.

Symptoms that should lead to consideration of a diagnosis of neuroendocrine tumor include unexplained flushing or diarrhea or unexplained symptoms that are associated with hormone-producing neuroendocrine tumors. Many patients may not have hormone-producing NETs; these tumors are often diagnosed during the evaluation of symptoms, including pain, related to the tumor.

Some patients with carcinoid syndrome can develop carcinoid heart disease. The heart valves, primarily those on the right side of the heart, can become thickened and work less well due to exposure to hormones such as serotonin. Heart failure can develop when the heart valves do not work well, and patients can experience leg swelling, shortness of breath, fatigue.

 

  1. What is the standard treatment for the disease when it is discovered early? What is the prognosis when it is caught early?

When neuroendocrine tumors are diagnosed at an early stage before spread has occurred, standard management includes surgery. For neuroendocrine tumors that are completely removed with surgery, the prognosis is good, and the surgery is often curative. Some smaller tumors can be removed with endoscopic techniques.

 

  1. What is the standard treatment for the disease when it is not discovered early? What is the prognosis when it is caught late?

When disease is more advanced, the treatment approach is individualized to each patient and depends on many factors such as tumor grade and extent of disease, organ where the disease started, symptoms related to disease, and how much growth has occurred.

Prognosis will also vary from person to person and depends on factors related to the grade and biology of disease, extent of disease, and the health of each patient. Many patients with advanced low to intermediate-grade disease can live many years.

Regarding treatment options for patients with low to intermediate grade disease:

Treatment options can include systemic therapy, which is treatment that can reach and affect the whole body, or therapy that is directed specifically to where the tumors is located. Systemic therapy can be administered in a variety of ways, such as pills by mouth or injections given intravenously, intramuscularly, or under the skin.

For some patients, surgery to remove all or most sites of disease can be considered.

If surgery is not an option and there is limited disease without any disease-related symptoms, some patients may be candidates for close observation. This is the case since some patients with low-grade disease may have very slow growing disease that may not grow significantly for some time. Treatment can be started at the time of progression or development of symptoms.

For patients with symptoms related to hormone production, somatostatin analogs can help symptoms by reducing hormone production. The medications octreotide and lanreotide are examples of somatostatin analogs.

In addition to reducing hormone production, somatostatin analogs also have been shown to slow growth of advanced gastrointestinal and pancreatic neuroendocrine tumors. Somatostatin analogs are commonly used as an initial therapy for patients with advanced neuroendocrine tumors.

For patients with advanced pancreatic neuroendocrine tumors, systemic treatment options also include everolimus, sunitinib, and chemotherapy. Everolimus and sunitinib are two oral targeted therapies approved by the FDA for patients with advanced pancreatic NET; both have been shown to slow growth in pancreatic NET. Pancreatic NETs can also be sensitive to chemotherapy. Temozolomide and streptozocin are examples of chemotherapy drugs that are active against pancreatic NET.

For patients with predominantly liver metastases, treatment directed at the liver can be considered. Hepatic (liver)-directed therapies include surgery, hepatic artery embolization, or ablation.

We continue to study new therapies for patients with neuroendocrine tumors. Clinical trials investigating new therapies may be an option for some patients with advanced disease.

For patients with advanced high-grade, poorly differentiated neuroendocrine carcinomas, platinum-based chemotherapy is often used.

 

  1. As the disease progresses, what kinds of things do patients experience, physically and mentally?

For some patients, there are no symptoms even when CT scans or MRIs show tumor growth.

For some patients, however, there may be development of symptoms such as fatigue, loss of appetite, weight loss, or pain. Some patients may experience an increase in hormone-related symptoms if there is an increase in hormone production that correlates with disease progression.

Disease progression can also be emotionally challenging. Depression might occur. Patients benefit from the support of family, friends and their health care team. The health care team can consist of many individuals, including oncologists, nurses, social workers, psychiatrists and therapists, and nutritionists.

 

  1. What is the greatest challenge we face in dealing with this disease? From a patient standpoint? From a medical standpoint?

From a patient standpoint, it can be challenging to find a team of health care providers with knowledge and expertise in managing NET. A multidisciplinary approach is critical to the care of patients NET since NETs are a diverse group of tumors, and our approach needs to be individualized. Depending on the situation, there may be a role for surgery, interventional radiology or nuclear medicine techniques, or medical therapy. When to start and how to sequence therapy may also need to be decided. These are complicated issues, and it is helpful to have multiple people thinking together about each patient.

From a medical standpoint, education and raising awareness about NET remains extremely important. With early diagnosis and intervention, we can hopefully cure more patients and improve outcomes. It is also critical that we expand our treatment options for patients with advanced disease. Compared to many years ago, patients with NET are now living much longer. However, we still need better treatments to control disease and help with symptoms related to disease so that patients can live long, productive lives with good quality of life.

 

  1. How have things changed with NETs over the last year? What do we know now that we didn’t know then? How has that knowledge changed what you are doing both with patients and in the lab?

The results of the CLARINET study, a large, international clinical trial of patients with advanced gastrointestinal and pancreatic neuroendocrine tumors, demonstrated that the somatostatin analog lanreotide slows tumor growth. This drug is currently under review at the FDA and may become a new treatment option for some patients in the near future.

Recent research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.

 

  1. There’s been a lot of talk about immunotherapy this year–and one foundation just made a grant to some researchers to look at using it in NET cancer. Can you explain what immunotherapy is? Is there cause for optimism about its use in carcinoid/NETs?

Immunotherapy is treatment designed to enhance the immune system’s ability to recognize and attack cancer cells. The outcomes of patients with some forms of cancer, such as melanoma, have improved dramatically through the use of immunotherapy.

Given the favorable results and advances that have been seen in other tumor types, it is important for us to understand the immune characteristics of neuroendocrine tumor cells and to investigate the role of immunotherapy in the treatment of NETs.

 

  1. What is the most promising thing you see on the near horizon?

Several large clinical trials investing novel treatment approaches have recently been completed. We are awaiting the results of these studies, all of which have the potential to influence treatment options for patients in the future.

Recent translational research has also provided new insight into the biology of neuroendocrine tumors. For example, a recent gene sequencing study suggests that dysregulation of the cell cycle may be important in the etiology of small bowel NET. As we understand more about the factors that drive the development and growth of neuroendocrine tumors, we hopefully will be able to find new targets for therapy.

Additional research also needs to be done to better understand why some people do and do not respond to certain therapies. Results from this investigation may help us to select the most appropriate therapy for each individual patient.

 Noon

My thanks to Jen for the detail she’s gone into above. I hope to come back to the immunotherapy idea later today.

I’ve had a difficult morning, above and beyond what I have been posting and responding to on the NET cancer front. Two people I am close to are facing cancers–and potential cancers–of a different stripe than I am dealing with here. I’ve taken some time to help them get through what they need to get through today. they seem OK for now, but I may need to vanish at some point if they need me.

Through the first six hours I’ve thrown a lot of things at you. The metrics tell me that despite my having to walk away from things here for a couple of hours, the audience has continued to build–to the point that we have an audience currently numbering around 1400. The thing about the way this works is you can easily drop in at any point and read the things I’ve posted this morning faster than I can get them in front of you. Keep in mind that all of this is being cross-posted to several different platforms–and i have to check in on those platforms periodically.

Back in February, someone asked me a question with broad implications–for all that it was directed at the lack of interest in finding a cure for NETs. I shared my answer with the individual, but never with a broader audience. Here’s something to ponder as you consider your lunch options here in the East–or think about second breakfast on the West Coast.

 

Question… Why is it so easy to “like” and “share” pictures and requests from soldiers, children, cute animal videos… but it is like pulling teeth to bring awareness to a cancer that is afflicting more and more people each year.

I reposted this last week, but did not have an answer to your basic question. I think part of the difficulty with many of those in the “community” is that most are exerting every ounce of energy into fighting their own disease. Carcinoid is not like most of the cancers I have seen. Its grinding assault just takes a huge amount out of both the patient and the caregivers. And it can do so for years. 

The lack of progress also grinds down people like me sometimes, whose spouses have died at the hands of the disease. There are days I spend hours crafting something to post or be sent out–and the reaction does not amount to a grain of sand tossed onto the surface of the ocean. It is a frustrating task–especially when I realize that cystic fibrosis–which has a quarter as many diagnoses a year–and a quarter the deaths–gets more attention than NETs does on a daily basis by a considerable amount. 

A friend in marketing has suggested we really need to find an ad agency to take this on pro bono. I begin to think she may be correct. Certainly, three years into doing what I have been doing I begin to feel like this ice berg is never going to move with a couple of single-sail boats pushing on it.

Add to that the reality that there are likely fewer than 1000 people on the entire planet working on the research side of the problem–remember, private enterprise does not see much profit to be made on “minor” cancers–that in the US we will raise and spend a mere $8-10 million this year at best–and that is up substantially from three years ago when it was only about $2.5 million–and the reason for that slow progress becomes increasingly clear.

Which, of course, simply increases the level of frustration for those of us dealing with the disease on our level–where the lives of friends and loved ones–or ourselves–are the things at risk. The US government and the people in real positions to help financially simply have no real skin in the game. And those of us who do, really don’t have the power and influence to bring about the end we desire. That is the toughest part of the entire Steve Jobs debacle–the news outlets still, for the most part, talk about his pancreatic cancer as though it were the type that people actually know about. The Pancreatic Cancer Foundation got a big bump in donations when Jobs died. Unfortunately, they have little interest in even pancreatic NETs.

Very few people know that Dave Thomas, who founded Wendy’s, also died as a result of carcinoid cancer. His family has also turned away from NETs. I know how I felt after Jane died. Part of me just wanted to walk away and deal with my own feelings of grief, failure, and inadequacy (If I had just… plagues my mind even now.) Maybe that is what is going on with them. I can’t say. 

But I had made promises to Jane and to myself–never mind anyone else–so I try to keep going. I try to keep moving things forward.

Ultimately, that is all any of us can do. But I really do believe that if we keep pounding on this–even a few of us–eventually we will get through that wall and find a way to cure this thing.

(As friends of mine say, “Never ask Harry a question unless you want a detailed answer that may be more honest than you really desire.)

12:45

Napoleon said no plan ever survives contact with reality–and that has been the case here today right from the start. I’m never really sure where the words or comments are going to take me on a day like this. Truth be told, things were changing when I started writing the opening post about 5:15 this morning. I planned to start the day by talking about Walking with Jane. Instead, I sidetracked myself into an entirely different direction.
You can read about who Jane was and what Walking with Jane is elsewhere on the walkingwithjane.org site. You can probably get a feel for what we are trying to do just by reading some of what we’ve posted to this point today. And if you haven’t already read everything I’ve posted today–here and elsewhere–and if you haven’t explored the rest of the walkingwithjane.org website, I’ll encourage you to do that right now. Trust me, this will all still be waiting when you get back–even I don’t write that fast.
And if you haven’t been to visit netcancerday.org, you should probably do that, too. There is a lot going on around the world today in honor of NET Cancer Day and NET Cancer patients.
But what you want see here–or there–is how close we came last winter to just walking away from this website–and how close I came to shuttering Walking with Jane, Inc. at the same time.
Last winter was a frustrating time for me. The website was withering on the vine. December, January and February had seen less than 1000 views combined. Increasingly, I felt I was writing for an audience of 12-15 people. They were nice people, but it was hard to justify spending hours researching and thinking and writing for a group that size.
On the foundation side, we had missed all our goals for 2013 by substantial margins. We did dinners and yard sales and comedy shows–and at the end of the day I looked at the money we were raising and the amount of effort it took to pull those things together and wondered what I was asking people to kill themselves for. Part of the problem was the economy–but part of the problem was we were trying to do too much with too few people.
And there were days I looked at NET cancer and how few people were involved in finding a cure–or even a way to slow it down–that I wondered if I could make any kind of difference at all. Jane said to me before she died that she wanted me to enjoy myself–wanted me to remarry and create a new life away from the sadness.
My wife never understood how much I loved her–never understood how serious I was when I said to her that if anyone or anything took her from me they had best hope the police found them first. I told her once that I loved her too much–and she asked me how that was possible? It was another of those things one cannot describe in words–only in actions.
And yet I found myself painfully tempted last winter to take her at her word and try to forget carcinoid/NETs and all the pain it has caused me.
But then I stopped thinking about the disease. Instead, I started thinking about the people I had met with the disease and what Jane went through and what they were going through and what their families were going through. I deciders I would give the website one more month. If March was better than the year before, I’d give it another three months.
In April, I took all the knowledge I had about the disease and wrote a piece about what it is like to have NET cancer. And the website erupted.
As I write this, we are closing in on 13,000 views for this calendar year with most of November and all of December still to ahead. Despite the three anemic months of December January and February–we are over 13,000 for the last 12 months. The best calendar year we ever had previously was 8500 in 2012–the first full year the website existed.
Several people have said to me in recent months when I have mentioned how close I came to giving up the website how glad hey were I didn’t–that it has made a real difference to them as they have fought this implacable disease.
The fundraising piece hasn’t gotten much better–or easier. But even there, things seem better. We are starting to learn how to organize a fundraiser so it doesn’t leave all of us feeling completely wasted afterward. That helps. One forgets how exhausting the learning curve can be.
The bottom line is we are not going away. NET cancer better be ready to deal with the sleeping giant it has “awakened and filled with a terrible resolve.”

2:04 p.m.

I’ve been a bit better this year at getting not named Harry to write things–though nowhere near good enough at it. While we are on the subject of foundations, I asked Ron Hollander, the director of the Caring for Carcinoid Foundation, to drop by. He had to be somewhere else today–we all have commitments on NET Cancer Awareness Day–but he did answer my questions beforehand.
1. Please give us a brief history of your foundation. When were you founded and why? What has happened to your organization since it was founded?
Founded by metastatic carcinoid cancer patient Nancy Lindholm in 2005, in response to the lack of treatment options for neuroendocrine cancer patients, the Caring for Carcinoid Foundation (CFCF) is the most focused and deliberate funder of neuroendocrine cancer research. Since 2005, CFCF has awarded over $10 million in research grants to leading scientists at renowned institutions throughout the US and abroad. We have a disciplined, pro-active research strategy overseen by a distinguished Board of Scientific Advisors and an expanding portfolio of basic and translational studies to accelerate the progress to better treatments and cures.
 
2. What is the primary mission of your foundation? Are you more research or awareness focussed? Why?
 
The mission of the Caring for Carcinoid Foundation (CFCF) is to fund research to discover cures and more effective treatments for carcinoid, pancreatic, and related neuroendocrine cancers. Since its inception, CFCF has awarded over ten million dollars in research grants to leading scientists at renowned research institutions. Along with its primary focus on research, CFCF is committed to supporting patients, families, friends and caregivers by providing them with complete and up-to-date information and educational conferences at leading centers around the country.
 
3. What services do you provide for patients? For researchers? For the general public?
Patients: Access to our monthly eUpdate and website, which contains information on the disease and on doctors and helps to answer any questions they may have. Our social media channels also offer the latest news and updates about neuroendocrine cancer. We also offer patient and caregiver educational conferences on a regular basis, which help patients understand the latest research in neuroendocrine cancer.
 
Researchers: We offer researchers a number of funding opportunities every year. These can be given as an award from CFCF after proposals are reviewed by a peer-review committee, or as a grant through the American Association of Cancer Research, whom we partner with to support innovative research.
 
General Public: Through our website, eUpdate, social media, and events, the general public can learn more about neuroendocrine cancer and how they can support research to help develop a cure or more effective treatments.
 
4. How much money did you raise last year? What was it spent on?
in 2013 we were fortunate enough to raise over $2.4 million in gifts and pledges. We keep our operations lean so that virtually all of the individual donations we receive go to funding the research for better treatments and cures of NET Cancers. The grants and sponsorships we receive from pharma support our information and education functions, allowing us to put on patient/family conferences without charge to attendees. And the generosity of our Board of Directors covers our non-program (i.e. other than research and education) operational expenses.
 
5. What is the most promising thing you see going on in NET cancer today? What are you excited about?
We think the most promising thing going on in NET cancer is immunotherapy. We are most excited about embarking on a major research initiative in immunotherapy. A treatment that uses the body’s own immune system to fight cancer, immunotherapy has led to dramatic results for some patients with other forms of cancer. We are eager to test the potential of immune-based therapy to provide similar breakthroughs for patients with neuroendocrine cancer and have brought leading immunotherapy experts on board to do so. Through a clinical trial and the development of breakthrough immunotherapy technology, we will be focusing on the effects of immunotherapy for carcinoid and pancreatic neuroendocrine tumors. To learn more, visit http://www.caringforcarcinoid.org/sites/default/files/images/Immunotherapy%20One%20Pager.pdf
 
6. What are the prospects for finding a cure for carcinoid/NETs? What would speed up the process?
There is never any reliable way to predict the pace or the results of the research process. That said, immunotherapy is probably the most exciting thing to come along in the last decade or more. Given the dramatic results it has had for some patients with other cancers, we are excited and hopeful that combining leading immunotherapy experts with dedicated neuroendocrine specialists may have some real breakthroughs that could “change the standard of care,” according to one of those immunotherapy experts.
 
We should also note that we have experienced a quickening of the pace of discoveries on the genetic and “epigenetic” research front over the last few years, opening doors that may lead to better treatments. We have also significantly expanded our clinical/”translational” portfolio with our first clinical trial (a potentially safer and more effective approach to Galium-68 imaging and PRRT treatment) and are testing several new treatments in centers across the country.
 
7. If people want to donate to your foundation, how do they do that?
Visit www.caringforcarcinoid.org/donations or send a check to: The Caring for Carcinoid Foundation, 20 Park Plaza Suite 478, Boston, MA 02116

2:21

You begin to look like you’ve had enough reading for a few minutes. So here’s a video about why I’m in this fight to stay.

https://www.youtube.com/watch?v=-GKvH8MxfYM

3:09 p.m.

Today is the 47 month anniversary of Jane’s death. Normally, I would spend a portion of today at her grave but, as we used to say to each other, “Our work is with the living.” But very month, I write a special piece about my progress since her death and try to put her death in a larger perspective. That piece was published separately from what is here, and I would encourage you to read it during this hour of the mediathon.

Our next patient piece is by Kara Daniels was diagnosed about a year before Jane was. She is a member of our Marathon Walk team and raised over $2700 for that effort. She was one of eight Pacesetters on our team, which raised $66,770 this year. She walked five miles, despite her cancer. Never say zebras aren’t tough.

Kara’s Story

When I agreed to write about my carcinoid experience, I thought this was going to be a lot easier than it actually is. It’s a journey that has taken me through 27 CT scans and over 70 chemotherapy treatments, not to mention ultrasounds of my neck and an upper endoscopy “just to be sure.” It took me a long time to actually say that I have cancer and an even longer time to say that I am receiving chemotherapy.

I had never even heard of carcinoid or neuroendocrine cancer when I was diagnosed a little over 5 years ago.

Although at this point I can’t recall how long I actually had symptoms for, I feel very fortunate in the fact that once my symptoms persisted on a daily basis, I was diagnosed and began receiving treatment all within 2 months. I was diagnosed with metastatic carcinoid in September 2009 after a two-month workup for Crohn’s disease, Irritable bowel syndrome and Celiac disease. By the time I was diagnosed, I had diffuse metastasis in my abdomen, in addition to metastasis to my liver, outside my right lung and to my pelvis. I have been on a clinical trial for the past four and a half years, for which I go to Dana-Farber every three weeks for blood work, to see my physician or NP and to receive chemotherapy.

I have just recently read that carcinoid is considered the “Look good cancer.” Shortly after I was diagnosed, a friend of mine told me she overheard someone talking one day about the fact that I have cancer. This other person proceeded to say “There’s nothing wrong with Kara, she didn’t lose her hair.” No, I haven’t lost my hair, and if you didn’t know me, you would never know I have cancer. I have continued to work through all of this and lead a very active life. It is the internal struggle that people don’t see.

Living with the side effects and lifelong treatment of carcinoid does provide many physical and emotional challenges. There are days when I really don’t have a lot of energy and sometimes it takes me longer to do certain things than it used to but still, I try to not let that stop me.   A very dear friend of mine passed away the beginning of the year from cancer. She was a great support to me and told me when I was first diagnosed that it was OK to have a pity party every now and then, which yes, I do.

I am fortunate to have the support of my family and close friends. I have to admit though, that there are times when I feel even my friends do not understand how I feel because I “don’t look or act sick.” People who would call me before my treatment to wish me luck or contact me afterward to see how everything went no longer really do that. That is the hardest aspect for me to deal with.

It is very difficult for me to live with the uncertainty of my cancer’s progression. I hold my breath every ten weeks when I get my CT scan results. I wonder every Christmas when I decorate the tree if this will be the last time I’ll ever do this. I hope to be able to see my son graduate from high school, college and to get married but there is a realization of eventually what will happen.

Each day now offers a new challenge and I have learned to realize the tough times for what they are and have learned what truly is important. There is a quote that says “You never know how strong you are until being strong is the only choice you have.” I can’t change the cards that were dealt to me but, in some way, I feel I have become a stronger person because of it.

–Kara Daniels

3:54

One of the underlying themes of this year’s NET Cancer Day is “Time to Diagnosis.” Patients are posting pictures of themselves with signs that say how many years they went before they got the right diagnosis. Some are even listing the things they were told they had before someone got it right.

The average time to diagnosis is 5-7 years from the first symptoms with three incorrect diagnoses coming before the right one.

But those are the averages–and the average is not always the reality. If they asked Jane to hold a sign up, hers would say 30 years. And she had so many wrong diagnoses we honestly lost track. She had at least three before I even met her, ending with the doctor who told her it was “All in her head.”

I wrote the pamphlet “Is it IBS? Or is it NET Cancer” two weeks after Jane’s death. I was in an airplane at 30,000 feet on my way to spend Christmas with my family in Seattle. My brother David thought it would be bad for me to spend the holiday alone in New England. To be honest, I’m not sure Seattle was any better for me than home would have been.

There is a picture of our family taken there on Christmas night. I don’t recognize my face in that picture–or my body. I look like an angry specter floating in the background. The only good thing, in many respects, was that it gave my father and I an opportunity to mend the fences that had come up between us decades before. My mother had died barely ten months before Jane. We finally had something in common: our grief over the loss of the people who had been the other half of our souls.

My father gave me the night Jane died the only phrase that helped me make sense of what I was feeling. “And now you know,” he said across the 3000 miles of air and space, “that there is nothing anyone can say that will make this feel any better.”

Some people may find that cruel. But it is the truth, at least for me, about the power of this kind of loss. Jane and I always dealt in truth–even when that truth was painful. My father dealt with life the same way.

But i was at 30,000 feet and seething with the dull anger only grief creates. More than anything else, ignorance had killed my wife. IBS is not a diagnosis, one of my doctors once told me. It is what we call it when you have a digestive problem in your belly and we can’t figure out what it is. It makes everyone feel better.

“And then,” I said to myself on that airplane, “it kills you.”

How many times had doctors told Jane she had IBS, I wondered? I knew I’d heard it at least three times in the years we were married, knew she’d heard it at least once before we even met. When she started flushing in her mid-30s, they told her it was early onset menopause. She passed out because she had low blood pressure. She dehydrated easily because she was too athletic and had the body fat of an elite athlete. She had insomnia because she was nerved up by the schedule she was teaching–AP Bio, Honor Chemistry, and Honors Physics all at the same time. If her feet swelled, it was because she was on her feet on a concrete floor all day in the lab and classroom. If she felt light-headed, it was anxiety.

This is what happens when we look at one symptom at a time–as so many doctors do. They are specialists and try to fit everything into their specialty. Rarely do any of them step back and look at the big picture of the whole patient. Her last doctor finally put all the pieces together, but by then it was 29 years too late.

So I wrote the pamphlet, hoping it would leave people a little less ignorant, would give doctors a better shot at seeing the big picture. I had Dr. Jennifer Chan, Jane’s oncologist comb through it to make sure I’d said the right things in the right ways. It was a small cry in the dark–a single match–but it was what I had to work with. I’m not a doctor, but I know how to read and put words together. I keep hoping that will be enough to make a difference.

I say to people over and over again, “IBS is not a diagnosis. Keep looking until you find out exactly what is causing the problem. What you don’t know can kill you.”

It’s what today is about. For the last 10.5 hours, I haven’t really brought up the topic of money. Ron talks about how to donate to Caring for Carcinoid. there was a sentence or two earlier about it, but I haven’t been playing Jerry Lewis today. I’m going to for an hour later tonight. But what really matters to me is getting the word out. Ignorance kills. Knowledge gives people a fighting chance.

At the craft fair I was at this weekend, someone asked how we had done on the monetary side. I told them we did OK–but that the real point of being there was to talk to people about NET cancer. If we reach just 10 people in five hours, that can make a difference.

My question is, am I reaching you today? Are you learning something that may help keep you or someone you love safer than they might otherwise have been? A million dollar donation would be nice–but what really matters is whether or not we are giving someone a chance who didn’t have one before.

5:20

I have no idea where the last hour has gone. But I think it’s time for a couple of videos on why NET Cancer Day matters.

https://www.youtube.com/watch?v=QsQejUYM9g4

5:42

When you are facing a disease with no cure and that most doctors have never heard of–let alone civilians–you know you are in trouble. So you go looking for information and support wherever you can find it.

Some of the best support you can get is from people who have been through it all ahead of you. Many patients have taken to the Internet and blogging to alleviate the frustration of dealing with NET cancer. By writing their experiences down they get a release from the anger, fear, and despair of dealing with a disease where a well-educated patient can know more than the primary care physician they are dealing with.

Of course anything you find on the Internet you need to take with a pound of salt–at a minimum. We’ve all seen the “studies” that claim marijuana will cure every form of cancer known to humankind, restore your hair if you’re bald, and cure the common cold. I won’t deny that there have been some rigorous studies done on some things that look interesting. But very little of it is peer-reviewed science. Once upon a time, people claimed taking mercury would cure venereal disease. And don’t get me started about the political lies spread over this new frontier.

But when people tell their real stories about their encounters with the disease they can have a cathartic effect on others with the disease. As Jen Chan said earlier today, one of the real difficulties of NET cancer is the emotional toll it can take on not only the patient but their friends and families. Spyder Robinson, a writer I admire, talks in some of his stories about the power of a single idea to bring healing: “Shared joy is multiplied; shared sorrow is lessened.”

There are some treatment gems that come out of these blogs periodically. But I would always want to check for the science behind those ideas before I would pursue any of them. And that is generally the least important thing about them.

Danica Corey writes a blog about her encounters with NET cancer on a regular basis. She has two daughters about twelve years apart. This entry recounts the beginning of her journey with NET cancer.

 

My story begins in 2006 (January I think). I had fired my most recent doctor and was going in to see a new one. At this point I had seen seven doctors in four years and I was ready to give up. Before I walked into this new doctor’s office I had decided this would be the last one. When she walked into the office–and before she could say anything–I told her, “I have seen seven doctors in the past four years and all of them have told me there was nothing wrong with me and it was all in my head. If you don’t want a challenge, I will walk out of here and you will never see me again.”

This doctor sat down and spent the next 45 minutes with me and came up with a plan. First she ran blood work–more blood work and labs than I had ever had prior. When most of that came back normal, she started looking elsewhere. She sent me to specialist after specialist.

Nothing . . .

She called me one day and told me to go get a chest x-ray as she thought maybe I had inflammation around the heart. Before I even got home that day she called me on my cell phone and told me she wanted to see me in her office the next day. She couldn’t say anything over the phone. When I went to her office she told me they saw a mass in my right lung and she was sending me to a pulmonologist to have it biopsied. Things went really fast after that. When I had the biopsy done I ended up having to stay overnight because they collapsed my lung.

So then I waited for results…

A few weeks later I got a phone call from the pulmonologist while I was working and at the front desk. He starts out by telling me they figured out what it was. OK…fine…then he goes on to say well you have cancer. Its called carcinoid. It’s a 2 cm tumor in your lung. He said he didn’t know that much about it, but he gave me the spelling and told me to look it up.

REALLY!!

I was stunned and a little freaked out. He told me this over the phone while I was working.

I walked into my boss’s office and told her. She sent me home for the day. I got to the car and called my husband. He was a little more than upset that I was 1) told over the phone and 2) while I was working. My husband told me to stay there and that he was coming to get me.

I remember almost nothing of the next few days. I was stunned and overwhelmed. Other than my husband I had no one to talk to and no one called.

I did what I was told and researched it. I found out a whole lot of information and when I went in to see the oncologist, I showed him my research. He wasn’t as impressed as I thought he would be. He outright yelled at me for trying to do his job. I was stunned and so was my husband, who looked as though he was going to punch out the doctor (and I didn’t blame him). Then he told me I had to have surgery or I would die. He said he was referring me to a surgeon. Then he got up and walked out. My husband and I were left there just looking at one another. I don’t think we spoke all the way home. Not because we were mad at each other, but because we were outright stunned.

There was one thing I had done a few months before all of this happened and I’m sure happy that I did. To this day I still have no idea why I did it. An AFLAC representative came in to our office selling insurance and I ended up getting a cancer policy that day. I just had a very strong feeling I needed to do this. Of course my husband thought I was off my rocker but it was only a few dollars a paycheck. I almost stopped it. I didn’t know at the time that I would actually need and use it.

I don’t remember much between the times of seeing the outraged oncologist until I met with the surgeon. I do, however, remember that morning when we were going to see the surgeon. I told Mark that morning that if I did not like the surgeon I would walk out and not return. When he walked into the room, I was put at ease. He was the kindest person and listened to me. I felt very good about all of it when we walked out.

The next few weeks and months were filled with tests and scans. I went in for surgery on May 31, 2006. Everything seemed to go according to plan. The surgeon went in and removed the lower lobe of my right lung via thoracotomy. Towards the end of my surgery, something went wrong and the anesthesia started to pool in my hand and I went into carcinoid crisis. The nurse went out to talk to my mom and my husband and mentioned something to that affect and when she realized no one had mentioned it she clammed up. To this day we still don’t know what happened. I was wheeled into recovery and I was in ICU for 2 days. It took twelve hours for me to come around after surgery. No one could, or would, explain why or what happened.

I spent the next week in the hospital. I went back in to the oncologist a few weeks later and he pronounced me cured. That was not the end of it but rather the beginning.

I went back to work after a few months, but became very sick again within a few weeks of returning to work. Ended up I went into my Dr.’s office and she sent me over to the hospital for emergency gallbladder surgery. It ended up I was admitted for a few days before I could have the surgery because my potassium was so low. They had to do infusions before they could do any surgery. It took them two days before they could stabilize me enough to have surgery. Then I went into carcinoid crisis during surgery again because they did not have the sandostatin drip on hand. I recovered from this setback and returned to work again.

Later that year, in December, I returned from a work Christmas Party to my phone ringing at home. I thought it was a strange time for my doctor’s office to be calling me–after all it was after 6 pm. The nurse on the phone told me I had to come in right away. I had been in the office the day prior and had routine blood work done (well I thought it was routine). This nurse went on to tell me because of my condition it was urgent I go in for a potassium infusion or I could go into cardiac arrest. I asked her what she meant by “My condition.”

She said, “Well you know you are pregnant right?”

I told her she was crazy because they told me I would not be able to get pregnant and I went on to tell her she had the wrong person. I am certain it took her ten minutes to convince me she did have the right person. I was in shock and terrified. In the weeks prior, I had been through lots of testing in the nuclear medicine department. Not only that, but I had had CTs, MRIs and x-rays. I could only imagine what all this must have done to the life growing inside me.

Come to find out I had had an octreotide scan two weeks prior and they had seen something pop up on the test that kind of surprised them. In the report, it stated that there was a hot spot near or in the uterus and I needed to see my ObGyn for follow up. At that point my doctor had been contacted and asked me to go in for blood work. I thought it was routine, like I said. Turned out she ran a pregnancy test and that little hot spot they saw on the scan was my little Patty.

Once again, my husband and I were completely overwhelmed with doctor appointments. Early on, we were advised to terminate the pregnancy because they had no idea what all the radiation might have done to the baby. One of my first appointments we went in was parade of doctors coming in and out of the office. I think all in all there were twelve doctors I saw that day. I felt like an experiment or some kind of carnival freak. I even had more than one doctor yell at me for being so careless and getting pregnant in the first place. It was not like I meant for that to happen–after all we were using birth control.

The pregnancy was compounded with difficulties because of the fact I was still recovering from lung surgery. It was a miserable eight months. I was so sick most of the time. I was suffering from carcinoid syndrome and was constantly in the doctor’s office getting infusions of potassium and IV fluids because of the persistent diarrhea and vomiting.

I had hoped to deliver her natural, but because of my condition and because they really did not know how my body would respond to the stress of natural childbirth, they decided to do C-section. The surgery did not go as planned, because at the time they had considered me cured and did not have a Sandostatin® drip on hand. My blood pressure dropped and they had to call for a crash cart. Things turned out ok after that and my little Patty was born. She was very small at 5 pounds 10 ounces, and she was a little early at 34 weeks gestation.

It took another year of suffering with carcinoid syndrome symptoms before I convinced my doctor to do a 5-HIAA test and they could see something was not right. I was put on sub-Q injections of octreotide and I did these myself for another year. I did these until we moved in 2009, when I was finally put on the Sandostatin LAR® injections.

I have never really stopped to think about my diagnosis. As far as coping–I don’t really. I don’t let myself get stuck in my head thinking about it. I take everything day-by-day. I have a hard time looking at myself as being sick. I have always taken care of everyone else and have always been the strong one. I have hidden from everyone how much I really suffer with all of this. I have always played everything down as to not let anyone really know what is going on. I don’t think even our families really understand. Recently it has become difficult to hide it and I have had to come to terms with it all. I still don’t ask for help and I think that bothers people (including my husband) but I am learning slowly. I have never found it easy to deal with my own problems.

My explanation to myself has been that because they have not found any more tumors maybe it is not so bad. I know this is not true because I live with the symptoms of the syndrome every day. Sometimes it is easier not to think about it and just push it aside and take care of my family.

Up until 2011 it was easier to just not say much to people. I was able to take care of most things on my own. Then, around November, I think I started to get very ill once again. I was hospitalized with what they called Ileus. My insides just kind of shut down. I had to have an NG tube put in for a few days. What a nightmare that winter was. I was in and out of the hospital three different times and have never quite been the same since. I now have to rely on people more. I have not been able to drive now for a couple of years, due to some vision problems I have, as well as the fact my reflexes, because of a movement disorder, just are not what they should be. I have been advised not to drive at all.

This has completely changed our life. It makes it very difficult for me to do what I really want to do, so I get very frustrated at times. I know it is hard on my husband because he is back in school getting his degree and is really trying to make things better for us. He tries to spread his time between school, taking care of me and helping with Patty (our youngest, five). Shann (our oldest, 17) is almost grown and he runs her around where she needs to go. He also helps with most of the housework, too. I feel bad because I used to do most of the housework and I took care of the girls. Now I am unable to do most of what I use to do, so now I do what I can to help out.

Our youngest is a huge challenge for us. She was diagnosed on the autism spectrum, is epileptic, and has moderate hypotonia (which used to be called floppy baby syndrome characterized by abnormal and reduced muscle tone, along with muscle weakness). She was born fairly small and has had challenges since birth. At 18 months she had two grand mall seizures that changed everything. She is now five years-old and thriving in kindergarten. She still has a long road ahead of her with many challenges, but she has a good chance at a really good life with lots of support.

My husband and I have no real plans. I think we have not wanted to see it or really face it head on. We have started talking more about it recently and really should start making some sort of plans. Just talking about it right now is a good start I think. I know I still have a little time left (or so I hope–no one ever really knows how much time they have, really). I have gotten really good at not facing my future. It is hard for anyone, but when you have a special needs child who will need support most of her life, it is twice as hard, I think. I know there will be many who will be able to step in for me, and my husband will be there for her, as well as her big sister (who I know will always be there for her little sister). However, as a mom, I want to be there for both my girls.

Like I said before, we do not know how much time we have left on this earth. We just have to do the best we can with what we have. I just hope it will be enough–and I hope my girls and my husband always know, no matter what happens, I love them with all my heart.

–Danica Corey

If you’d like to read more of Danica’s story, she suggests the following posts in the order presented here:. Or you can go to her blog at http://mycornerofthepond.wordpress.com

http://mycornerofthepond.wordpress.com/2011/07/23/just-a-bad-week/

http://mycornerofthepond.wordpress.com/2011/08/02/follow-up-at-doctors-office-more-realizations/

http://mycornerofthepond.wordpress.com/2011/10/23/will-i-see-her-grow-up/

http://mycornerofthepond.wordpress.com/2012/01/27/hard-questions-difficult-answers/

http://mycornerofthepond.wordpress.com/2013/01/22/no-i-did-not-fall-off-the-face-of-the-earth/

http://mycornerofthepond.wordpress.com/2013/07/28/we-finally-landed/

http://mycornerofthepond.wordpress.com/2013/09/30/giving-up-is-not-an-option/

http://mycornerofthepond.wordpress.com/2013/11/06/when-doctors-and-insurance-comp-take-away-your-cancer-treatments/

http://mycornerofthepond.wordpress.com/2013/12/23/a-renewed-hope-just-in-time-for-christmas/

6:42

If you found Danica’s blog interesting, you might also try these:

6:46

The time has come to talk about money. It is not a subject I really want to broach because I hate asking people to make donations. But the unvarnished truth is we can’t count on big pharma or the government for money. And research and trials cost money–bundles of it.

I’ll also be the first to admit there are alleged cancer charities out there that take in substantial sums of money, very little of which ends up doing much more than paying administrative salaries. I think that’s criminal and it makes me crazy.

The good news is I haven’t found a NET cancer charity that does that. Those I’ve worked with run extremely lean organizations and are quite transparent about where the money goes. Anyone who raises more than $500,00o in a year has to file a Form 990 with the federal government–and those are public records anyone can access. Both the Caring for Carcinoid Foundation and the Carcinoid Cancer Foundation link to their Form 990 on their websites. You can see exactly what they take in and what they pay out to whom.

Walking with Jane is not big enough to have to meet that requirement. I can tell you that no one here gets paid a nickel. I am a retired teacher. I live frugally so that I can donate as much of my income as I can to NET cancer research and awareness. Every penny we raise goes to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute or to the American Cancer Society Relay for Life of Greater Fall River. Donors determine where we will send the money they donate. Currently, DFCI gets about $8 for every $1 that goes to ACS. We also give a scholarship each year to a graduating Westport High School senior who is entering either medicine or science teaching. In addition, we give a scholarship at Jane’s alma mater, Bridgewater State University. I personally make donations to CFCF and CCF each year, in addition to donations to the Program in Neuroendocrine Cancer through the Walking with Jane Dybowski Fund for Neuroendocrine Cancer.

In short, I put my money where my mouth is. I want carcinoid/NETs dead–and if that means I buy the cheapest, most economical–and most reliable–car I can find and drive it for 12 years, I do that so that I can bring about the death of the cancer that killed my wife.

Some folks think cancer foundations need to do more to lobby the Congress about cancer funding. But the way the laws are written, it is illegal for any of us who are 501 (c) (3) charitable organizations to do so. When I make lobbying trips, I do so as an individual–not as the president of Walking with Jane.

Here’s the awful truth though: what we spend annually on NET cancer does not amount to a rounding error on what we spend on lung cancer or breast cancer or prostate cancer or colon cancer. Aside from the contributions of drug companies, we spend less than $30 per year per patient–and even with what the drug companies kick in, we spend less than $60 per patient.

There are lots of things about ACS I don’t particularly like. we don’t get much respect there. But they do kick in about $1 million every year for NET cancer research. That doesn’t sound like much, but it is at least 10 percent–and maybe more–of what gets spent on carcinoid/NETs research in this country. We can’t afford to pretend that money doesn’t exist.

So here I am with my tin cup. I’m not going to ask you to make a donation to Walking with Jane. But I do know both CFCF and CCF have projects that need financial support. I know the Program in Neuroendocrine and Carcinoid tumors at DFCI has projects worthy of your support. And I know my personal support of all three is going to be smaller than usual this year because of multiple gum surgeries I’ve had to go through–and that I’m not done with yet.

If you have some money and are looking for somewhere to ‘invest” it, these organizations will make a difference–as will any of the major NET cancer centers in the US.

7:43

While we’re on the subject of money, in less than two weeks, registration will open for next year’s Boston Marathon Jimmy Fund Walk. Our team–which will walk under a new name that is still to be decided–will be the first Walk team ever with it’s own officially recognized FB page. I spent part of the weekend piecing together a prototype of the page so we could see what it would look like with the official Jimmy Fund logo. You can look at the prototype at https://www.facebook.com/pages/Allies-against-Carcinets-Marathon-Walk-Team/803441499702633?ref=hl.

But don’t bother liking the page. It isn’t right yet–and any name change means I’ll have to start the process from scratch. But do let me know what you think.

By the way, this year’s caring for Carcinoid Walking with Jane and Hank and Anne team–now you know why we need a name change–raised $66,770.28, all of which goes to carcinoid/NETs research.

8:07

We have about four hours to go here on this year’s Social Mediathon. I’m running out of steam  a little bit–but I said I’d run until midnight and I meant it. But I could use a little help at this stage. Ive posted, between the main body here and places I’ve sent you off to look at, close to 20,00 words.

The problem is, aside from some quick “I like this” kind of comments, there hasn’t been much reaction from any of the over 2500 people who have looked in over the course of the day. It’s tough working in this degree of vacuum. I’ve got plenty more to talk about, but at this point I’d like to know where you’d like this conversation to go.

So what are your thoughts?

8:26

Since I brought up the Program in Neuroendocrine and Carcinoid Tumors, I suppose I should let the guy in charge of it talk about it.

https://www.youtube.com/watch?v=UbRu5rTNu08

 8:40

I’ve just spent a few minutes scrolling through Facebook. Frankly, it could be any other day of the year for the most part. There are a few extra zebra pictures that are outnumbered by the cat and dog pictures and the cute kid pictures. There’s the usual  set of posts in the run-up to Veterans’ Day. Very few people have done anything to their profile pics to show any kind of support for the cancer today is about.

I wish I could say I was surprised. I can’t. For most people, cancer was last month–if they think about it at all. Cancer is one of those things we don’t like to think about–something we can fight by buying the right blender or the right can of soup in the right month. The rest of the time we put it on a shelf and try not to think about it.

Today, I got smacked by my third and fourth new cancer cases of the last week. I spent my day helping them while trying to help all these other people I know who have the same cancer Jane did. It’s hard to connect to the political posts and the cats and the cute kids and the invitations to play games I have no interest in even when I’m feeling upbeat and positive.

I understand why it is so hard to get people to pay attention. They have their own crises in their own lives. I saw a post from someone yesterday talking about how they were too rich for food stamps but too poor to be able to afford food through the end of the month. I’ve been there–may some day be back there since there is no way my pension will keep up with inflation. Our government remains as dysfunctional as ever for the common people–though it seems to work just fine if you are a corporation or independently wealthy.

But cancer… I’ve seen too many people die from it–just as I’ve seen too many people in poverty. I’m not talking about the clean deaths you see on TV. I’m not talking about the humorous poverty of Two Broke Girls. I’m talking about the real thing–in both cases. And when you’ve seen either one for real, lived through either one, it changes who you are and how you perceive the world around you. And that is true of the real anything: war or pain or loss…

I wish I could get angry about today–about all the people who just kept on as though today were any other day. I can’t. I know too well that they have their own tragedies they are trying to work through on their own.

They, too, have a rare disease that may not be as rare as they think. They, too, are zebras. They just belong to a different herd.

9:28

Pamela ter Gast is a patient at DFCI. She has been over nearly every hurdle a zebra can encounter. Yet she remains incredibly upbeat–as this post will attest.

 

Just my Saturday thought….

We’ve been dealing with this for enough years to be grateful for every new day. I’ve had days with such indescribable pain that I literally didn’t MOVE for fear a muscle somewhere would scream.. We’ve lain in each others arms, so indescribably sad and weeping, because they thought nothing more could be done (which also gave me feeling of rebellion and resistance I’ve never known before)

Every possible scan, biopsy blah blah , but not the Gallium 68. I just show up for everything, which has become routine, except for the time when I didn’t get to go home for a month plus, because I actually WAS dying…

We’re on first name status with Drs, nurses AND the best lunch lady in the whole wide world.

Now here we go again… Am I happy about it? Hell no! I am tired…I’m sick of this (no pun intended  ) but I also want to be 28 years young again and that’s not going to happen either! My life is beautiful..my poor body is exhausted, so I take naps…and watch Hallmark movies… When I get sad I cry, I also laugh til I almost pee my pants…I go “retail therapying” with my daughter and guess what….I’ve NEVER charged outrageously or maxed out anything…you know why? BECAUSE I AM ALIVE AND PLAN ON KEEPING IT THAT WAY!

Why am I writing this? To give HOPE ,even if it’s just 1 person… Yes, we’re losing ZEBRAS but every day people are dying. We ZEBRAS are front runners, the pioneers of sorts and we have a growing community.

We find each other and are here to give each other support, because, even though this cancer is like an air puppet, we’re all in the same boat! Look at and listen to “Sunny” Susan Anderson. How many years has she been dealing with this and being an activist?

This morning I woke with the sun in my face… NO ONE can take that away from me…and every happy moment YOU have is yours to relish and enjoy!

–Pamela ter Gast

9:51

Time to do some housekeeping and make a final challenge or two.

We have had 475 views so far today on walkingwithjane.org. That is 305 more than last year and 64 short of tying the all time record. We have two hours to come up with those views. It would be nice to get there.

In addition, we have nearly 3000 views on Facebook so far today and another 1000 on Google+.  People have been retweeting madly on Twitter for most of the day–but I have no reliable metrics for what happened there. I do know we had over 50 retweets during the day.

We have had over 700 views on our YouTube Channel and added an additional dozen subscribers during the day.

We didn’t do badly. I hope everyone has learned a lot so far today–and that you’ll learn a few more things before midnight EST.

10:19

Jillian was diagnosed with carcinoid/NETs at 29 years old. At the tome of her diagnosis, it had already spread to her liver. As she says, she has a lot at stake

 

I remember my first flush. It came immediately after eating breakfast one morning – the same breakfast I’d eaten for years. It was so jolting that I responded audibly to it. It was a hot, uncomfortable feeling accompanied by a raised heart rate, but with no sweat. It was such a sudden change in my body. One day the flushes weren’t there, and then suddenly, I couldn’t take even a mouthful of food without that terrible feeling.

Carcinoid flushing is caused by the five Es – epinephrine, eating, ethanol, emotions, and exercise.

As a woman, experiencing what I thought were hot flashes, I immediately went to a gynecologist. The doctor dismissed me and told me to drink more orange juice.

I was lucky in that it took me less than six months to get a diagnosis, but I had to fight hard for it just the same. I saw a variety of doctors in two different states before I heard the term carcinoid cancer for the first time in 2008. Despite test results suggesting that I had carcinoid syndrome, my doctors were still unwilling to believe it. They said I didn’t fit the profile and that carcinoid cancer was so rare that most oncologists would never diagnose even a single case. No one believed I had it until I had my first CT scan clearly showed liver metastases. I got the CT results the same week as my first wedding anniversary. I was 29.

I have since made a point to specifically tell gynecologists about carcinoid syndrome because I believe that with flushing as a symptom, most women will visit their ob/gyn first. I urge you to do the same.

–Jillian

 10:38

What is the importance of a single life?

Jane and I did something most people would find peculiar on our wedding night. We watched Star Trek II: The Wrath of Kahn. In retrospect, it seems a bit strange even to me. But we both loved Star Trek–and it was her idea, not mine. One of the opening scenes shows a Starfleet Cadet facing a no-win scenario in a simulator. Kirk does not believe in no-win scenarios. He is the only person ever to have beaten the simulator on that test. He cheated by reprogramming the computer.

Neither Jane nor I believed in no-win scenarios. All we asked for was a fighting chance–and we spent our lives turning no chance into a fighting chance.

I still do.

When Jane was diagnosed with this cancer no one had ever heard of we immediately began working to turn the no-chance her first oncologist believed she had into a fighting chance. The first step was to fire him and try the person we were originally scheduled to see. That woman had the same attitude. She sent us to Dana-Farber and Jen Chan. together,we pieced together a plan that would create a fighting chance.

Having a fighting chance doesn’t mean you always win. that’s what happens to Spock at the end of The Wrath of Kahn: he recognizes that in order to create a fighting chance for his crew mates, he has to give up his own life. “The needs of the many,” he says, “Outweighs the needs of the few–or the one.”

Long before we met, Jane and I had adopted that as another part of our core belief system. She kept teaching long after she should have been in a doctor’s office because her students needed her to be there. She insisted, even after her diagnosis, that I keep working because our students needed at least one of us–there were some for whom we were the parental figures they did not really have. I went back to work two days after her funeral for the same reason.

I wonder sometimes, if Jane knew what she was setting in motion in those last months–knew that because of what they learned from her, others would live. I wonder if she knew through the post operative haze the impact she was having on the doctors and nurses who worked with her. I think she may have known–may have known that every time she woke up she was pushing them to match her heroism.

She changed my life every day from the day I met her. She would tell you I changed hers as well. And we changed the lives of many students over the years. Why would that stop when she was dying?

It didn’t. But I will never know how much of what she did in the last days of her life was as intentional as the way she lived her rest of her life.

We said we would find a way to beat NET cancer. She said it on the day she was diagnosed. And we both vowed that we would beat it together–just as we had fought every other battle life had presented us.

How much does a single life matter? Sometimes it makes all the difference in the world.

11:30

walkingwithjane.org has had visitors from 11 different countries today. Barring a last minute surge, we will fall just short of our best day ever on the website. We’ve seen near or record numbers on all our platforms.

But records matter far less than whether we have reached people with the efforts of today. Did we save someone’s life today? Will someone take home a bit of knowledge or inspiration that will make a difference in their lives–and a difference in the lives of those around them.

Periodically, I run into students who tell me how much they loved my class. I always ask them the same questions: Did you learn anything useful from it? Did it make a real difference in your life? That is the real test of anything for value.

We have a half an hour left before i close up shop for the night.Please spend some time reflecting on all you have read and seen to day. How will those experiences shape the you that is becoming? How will they change how you react to not only those who have NETs, but to those who have troubles of their own?

Be kind to everyone, for you never know the burdens they are carrying.

11:40

My thanks to everyone who helped make today possible,especially to those of you who wrote things and made videos and shared pictures. You made what could have been a difficult day bearable.

My thanks, as well, to those of you who hung out with us all day, commenting on posts, pushing like buttons and sharing posts. It is a lot easier to do this when you know people are reading, listening and watching.

We will do a 12 hour general cancer Social Mediathon in the spring and–the gods willing and the creek don’t rise–another one of these next November 10.

For those of you in Texas and Massachusetts, remember, we have tyne entire month to work with.

But I’m taking tomorrow off–at least from this.

Midnight

Good night.

Down and down and down

Uncategorized

Drowning in down

I’m having a very down day today. I have a mountain of things to do: meetings in Boston to prepare for tomorrow, items to prepare and schedule for Monday’s Mediathon, the pre-event PR that needs to be done, the never-ending paperwork that goes with being a non-profit–and never mind the housework, yard work, and shopping required to avoid an appearance on Hoarders. I don’t have time to get down in the dumps, but I’m there anyway.

People are hurting and people are dying…

Part of it is yesterday’s election. I want to believe that cancer research is a non-partisan issue. But I know that budget cuts will mean cuts to carcinoid/NETs research. Still, the election is small cheese compared with what is really bothering me.

Carcinoid down

I spend part of every day listening to carcinoid/NETs patients. I read their posts in five different support groups. I read their blogs and Facebook pages. I go to patient conferences. Many of those folks have become friends–a term I do not use lightly.

I want to believe that cancer research is a non-partisan issue.

Their struggles and frustrations, individually and collectively, have become an important piece of my life. I rejoice with them when they get good news. I become frustrated when they get frustrated with their insurance companies, their doctors and the restricted lives they endure. And I grieve with them when their doctors tell them there is nothing more they can do.

How down am I?

I don’t comment much in the support groups. Most of the time, there is little I can say or do that will make a difference–nothing I can say that will not come off as an empty and clichéd platitude. I leave the medical advice to the medical community. I now know enough about the disease to know there is way too much I don’t understand about it for me to be giving advice beyond the advice people already get and give: find a specialist, get to Iowa or New Orleans or New York or Boston or…

I rejoice with them…and I grieve with them…

Instead, I read the research and try to figure out how to put it in terms regular people will understand. Instead, I try to organize groups and events to spread the word to the general population about carcinoid/NETs and try to find new sources of money for research. I want to save lives because I know just how bleak things are for those who are left behind. You know you are in trouble when you want the furnace to come on, not because you want heat, but because the sound will break the silence of an otherwise empty house. You know you are in trouble when you look forward to the refrigerator coming on for the same reason.

Frustration brings me down

Yesterday, I forced myself to go out to be with people. I’m fine while I am there. Listening to others talk, seeing others with the ones they love, having a conversation about politics or sports or housekeeping or whatever is not a problem. Coming home is. I constantly weigh that price against the benefit of social interaction. Some days, the price is just too high.

I want to save lives because I know just how bleak things are…

And I’m frustrated. More than four years have passed since Jane was diagnosed. More than 48,000 people have died of carcinoid/NETs in that time. More than 48,000 new cases have been diagnosed in that time. And while we have made significant progress against the disease over that time, those numbers have not really changed much since Jane’s diagnosis, since her death, since I started working to put Walking with Jane together.

Success and failure

Others see what I have done in that time and see success. I look at it and see what I have failed to do. We’ll generate close to $100,000 for research and awareness and scholarships this year. That sounds like a lot–and it is. But my goal was for Walking with Jane to have generated $250,000 this year. My goal was that NET cancer research would have $20 million to work with this year. Instead, it will have $7-10 million.

Some days, the price is just too high.

The lowliest candidate running for a judgeship in some backwater county raised more money than Walking with Jane did this year. As a nation, we just spent over $4 billion electing people to represent us in Washington, DC. People who “don’t believe” in evolution or global warming had no difficulty raising boatloads of money for ads whose main theme seemed to be “more of the same” and “not one of us.” What the “rare cancers” could have done with that $4 billion makes me weep.

Getting up from down

I am not giving up. I’ll keep pushing every button I can find, sending letters and ringing door bells and making posts for Facebook and any other place I can think of.

I…see what I have failed to do.

But today, I won’t pretend to be upbeat. People are hurting and people are dying from this cancer. I feel what they feel–as does anyone with a heart or a brain.

I don't smile much anymore. Jane's death took me down a sad path I have not come back from. But today I am more down than usual.
I don’t smile much anymore. Jane’s death took me down a sad path I have not come back from. But today I am more down than usual.