Work for change requires planning

awareness, NET Cancer Awareness Day/Month

Family work

I don’t understand how families work. That may seem strange coming from the eldest of six children, but it is true, none the less. We all grew up in the same house, had the same mother and father, but we don’t talk much–or even communicate much. For the most part, we exchange cards and letters at Christmas and little else.

The goals, then, were fairly simple…

My youngest brother and I are about as close as we get. We talk on the phone a few times a year. Before Jane’s death, he would visit every few years for a few days. I was not surprised when he said he’d come East for her funeral. He liked Jane. He liked me. When another brother announced he’d come out for the funeral–stunned doesn’t begin to describe it. We’d talked maybe three times in 25 years.

Relationship work

Between them, they convinced me spending time with my family in Seattle after Jane’s death made sense. My father would spend the holidays without my mother for the first time, just as I faced them without Jane. We’d be good company for each other. And facing a week in an empty house would do neither of us any good.

I don’t understand how families work.

My father was in poor health. He was one of those people dialysis doesn’t work on. They’d done a novel procedure a few years before to jump-start one of his kidneys. That had kept him alive. He slept a lot. But we buried a lot of old hatchets as we shared our grief.

Initial NET work

His need to sleep meant I had a lot of time to think over those eight days–a lot of time to do research and write and plan. By the time I landed in Providence on New Year’s Day I’d finished the third draft of “Is it IBS? Or is it NET Cancer,” though it had a different title than it does now. I’d also immersed myself in all the research I could find on the Internet on the disease that had carried Jane off in such ugly fashion. On the plane home, I’d finished devising a plan for going after NET cancer with everything I had.

…we buried a lot of old hatchets…

I based that plan on the realities I perceived. I saw two foundations actively working on the disease. One seemed focussed on patient education, though it also had an interest in funding research. The other seemed focussed on funding research, with a side interest in patient education. Neither seemed to raise much money. Neither was reaching out very well to educate the general population. Neither had sufficient staff to do much more than it was doing. Some of that has changed in the years since. Some hasn’t. Both continue to do good work with limited resources.

Change work

Two other things struck me. The first was the absence of NET cancer–we called it carcinoid cancer then–on the American Cancer Society website. Creating awareness, research or funding would prove difficult if the biggest cancer-fighting organization on the planet did not seem to know this particular cancer existed. They still make no mention of it on their pages, despite years of personal lobbying.

…a plan for going after NET cancer with everything I had.

The second was how little we actually knew or understood at the level of basic science about NET cancer and how it worked. The day before Jane’s death, Jennifer Chan, her oncologist, had told me what they had learned from Jane had doubled knowledge of the disease. I’d found that hard to believe given how little I knew they’d learned. Now I knew Jen’s statement was probably true because we knew virtually nothing to begin with.

Previous work

None of this is intended to belittle the efforts of either of the two NET cancer foundations nor the work of the people working on the disease. Given the slender resources they had to work with, they’d done amazing things. The federal government had spent nothing on NET cancer research from 1968 to 2008. The American Cancer Society had done a little better than that, but not much better. What little money there was came largely from private sources–and there was precious little of that.

Two other things struck me.

To improve funding we had to improve public awareness of the disease first. The “Is it IBS?” pamphlet became the first volley in that effort. Millions of people learn they have IBS every year. But IBS isn’t a real diagnosis, as my own doctor once told me. It is what doctors call any gastrointestinal problem they can’t figure out the real cause of. Giving a thing a name, even if that name is meaningless, makes everyone feel better.

Diagnostic work

Unfortunately, making people feel better isn’t anything like a cure. Sometimes, it causes a patient to stop looking for the real cause of the problem. Sometimes–as it had with Jane–the consequences are deadly. I designed the pamphlet with two purposes in mind. The first was to alert IBS patients to the potential danger of ignoring their symptoms and accepting the inaccurate diagnosis. The second was to raise awareness among both doctors and the general public about the disease.

…they’d done amazing things.

I also had a sneaking suspicion the disease was being badly under-diagnosed. The first oncologist we’d seen locally told us Jane’s case was the first she’d ever seen. Within a week, she had three more cases–and I later learned of at least one more another oncologist in her clinic discovered that week. Either there was something in the local environment causing a pocket of such cases, or the disease was more common than we thought.

Donor work

My reading led me to conclude the latter was more likely the case. Anecdotally, at least, it seemed that whenever doctors saw a case of NET, they found several more cases almost immediately. Those reports covered a broad geographic area, which argued the environmental factors were fairly common or the disease was being missed until something–a patient with the disease–caused the doctors think to order the right testing.

…the consequences are deadly.

Broader awareness, I thought, would likely lead to greater funding, as well. From what I could see, most of the private funding came from large donors. Those donors generally had a stake in the research they were funding: they either had the disease or had someone close to them who did. The loss of a single large donor, given how little we were raising, would prove a significant blow to any research program–or any foundation. If breast cancer research loses a single $100,000 donor, it’s not a big deal given the total we spend on breast cancer research. If NET cancer research loses a single $100,000 donor, it can be a huge blow that potentially eliminates an entire line of research.

Goal work

Creating a large group of smaller donors might create a more reliable stream of revenue for both research and awareness once such group was constructed. I could see that when I looked at where the money was coming from for other better known rare diseases. For example, we diagnosed about a 3300 new cases of cystic fibrosis in 2010, compared to about 10,000 new cases of NET in the same year. Yet the Cystic Fibrosis Foundation raised far more money in small donations that year than was raised in total for NET cancer.

Broader awareness…would likely lead to greater funding

The goals, then, were fairly simple: raise awareness among the general public about NET cancer and raise more money for research. It seemed fairly simple at 40,000 feet on the way home from Seattle. The reality on the ground would prove much more difficult.

The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor's office.
The work of raising money and awareness takes me many places. Appearances at craft fairs bring the opportunity not only to raise money but to talk to people about what NET cancer is in a more social setting than a doctor’s office.

Buried truths about NET cancer, 2010

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Buried emotions

We buried Jane on Saturday, December 18, 2010. I went back to work Monday morning. People told me I shouldn’t have–and they may have been right. But I knew our children–our students–had lost their surrogate mother and barely seen their surrogate father in more than a month. I needed to be there for them–and they needed to be there for me.

When we reached cruising altitude, I began to write.

I arrived early that morning–as we always had. The halls were dark and empty as my soul. I opened the door to my classroom. My students stood quietly in the dark beneath a sign that read, “Welcome Home.” That fanned a tiny flame I barely knew existed. In that moment, I knew I was not completely alone–that I would find a way to survive this.

Buried past

For many NET cancer patients in 2010, survival was the central issue. As I said in yesterday’s post, they had few options–none of which did more than slow the course of the disease and/or alleviate some of the symptoms. Those symptoms–frequent diarrhea and flushing, for example–were inconvenient and embarrassing at best. At worst, they became deadly.

…I knew I was not completely alone…

Jane’s NET cancer had gone undiagnosed for decades. She had tumors in her liver the size of her fist–and smaller tumors scattered everywhere in that organ. Students told me later there were times they thought she was about to pass out in front of them. She had daily bouts of diarrhea she told no one about. She was dying–likely knew she was dying–but she worried about her students and the AP and Achievement exams they faced in the spring more than she worried about her own health.

Buried conditions

Carcinoid heart disease remains a fairly rare event for most NET cancer patients. It happens when the tumors in the liver create serotonin in significant quantities. The body produces serotonin for a variety of purposes, including controlling the speed of digestion, respiration, sleep, and mood, among other things. Normally, the liver cleans out the serotonin in the blood stream  before it reaches the heart.

She was dying…

But when the serotonin is manufactured in the liver, that serotonin doesn’t get metabolized. Instead, it flows into the valves on the right side of the heart. It is a chemical that is highly caustic–caustic enough to destroy those valves, causing the blood to leak out around the valves and gather in the legs and lower abdomen. This causes swelling, first in the feet, then in the legs, and finally in the belly as the damage increases and more and more fluid leaks out.

Buried truth

That swelling finally got Jane to the doctor. By then, it was likely really too late to do anything. But we tried anyway–both trying to put an optimistic face on for the other. And we had a plan–an unrealistic one, in hindsight, but a plan none the less.

It is a chemical that is highly caustic…

Job One: lower the serotonin levels with Octreotide and  Sandostatin. Job Two: fix the valves in her heart. Job Three: reduce the tumor load in her liver using liver embolization, followed–or preceded–by liver resection. Job Four would go after the original tumors in her lower bowel.

Unburied truth

We never got the serotonin levels under control before her heart got so bad the operation couldn’t wait any longer. Then, the operation discovered the damage to her heart was greater than anticipated. The surgeon solved that damage, but a carcinoid crisis happened every time she started physical therapy to get her back on her feet. Every time she ate, she got hit with massive diarrhea–which left her increasingly dehydrated and weak.

That swelling finally got Jane to the doctor.

Finally, there was nothing left to try–and no reserves left to try with. Early diagnosis–even just earlier diagnosis by a few years–would likely have made an enormous difference. I know a correct diagnosis in 1980, when Jane had her first symptoms, would mean she would still be here today. I’m fairly certain an accurate diagnosis even as late as 2005 might have made a significant difference. Trials existed and maybe she would have gotten lucky. Instead, she died.

Beginning the next battle

My students got me through that week before Christmas. They didn’t expect much from me beyond my presence–and the assurance I would not disappear on them. They–and some of my colleagues–helped me begin to process everything that had happened in the preceding year. I began to see what needed doing and began to think how best to do those things.

Finally, there was nothing left to try…

As I boarded the plane to Seattle that Thursday night to spend Christmas with my family, I began sketching out a plan that started with a single pamphlet. Doctors told Jane for years her symptoms were caused by Irritable Bowel Syndrome. I now knew NET cancer had a too similar set of symptoms. When we reached cruising altitude, I began to write. 

Jen Chan was Jane's oncologist. Seven years after we buried Jane, Jen works exclusively on NET cancer.
Jen Chan, Jane’s oncologist, helped me write my first pamphlet on the NET cancer. Seven years after we buried Jane, Jen will chair a Phase 3 trial of a new drug for the disease next spring.

2010: NET cancer’s watershed moment

awareness, Jane, NET Cancer Awareness Day/Month

Standing on the watershed

Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute and past president of NANETS, calls 2010 a watershed year in the treatment of NET cancer. He cites FDA approval of the first new drugs to treat pancreatic NETs in more than a decade and a handful of papers on the basic science.

…2010 was an improvement over what had gone before…

It was a watershed for my wife and me in a very different way: we learned in August that she had NET cancer. We learned her primary care physician had never heard of it before. We also learned her first oncologist had never seen a case of it before. We met Jennifer Chan, who would become my wife’s NET cancer specialist and become a good friend to both of us.

Our shared watershed

Jane decreed she would become the first person to beat advanced NET cancer. She told her doctors to learn all they could from her. She brought a science teacher’s mind and observational powers to the NET cancer research table. And on December 10, 2010, 23 days after her 56th birthday, she would beat her advanced NET cancer the only way anyone ever had–by dying and taking it with her.

It was a watershed for my wife and me…

She also left a series of images indelibly printed on my mind: Jane sitting in the bathroom injecting herself in the belly twice–and then three times–a day with octreotide; Jane struggling up the stairs at night after a long day on the road and a long day at Dana-Farber; Jane unconscious in a hospital bed; Jane letting a final breath escape her lips–a breath I caught on my own.

My personal watershed

That night, I went home to an empty house and an empty bed. The dread quality of the silence I cannot describe–only that I knew instantly I needed to find a way for others never to hear that particular silence. Had I not already made promises to Jane, made promises to her doctors, that silence would have put me on my current course all by itself.

Jane sitting in the bathroom injecting herself…

I knew Jane had died because of ignorance. Her local doctors did not know NET cancer existed–and so had no way to test for it. We had no reliable imaging system that could see the tumors, no fully reliable blood or urine tests. Her doctors at Dana-Farber–NET cancer doctors everywhere–did not know enough about how the disease worked to have a cure–or even a treatment that worked for the majority of patients to alleviate symptoms.

Sources of ignorance

I knew that ignorance stemmed from two sources. I knew the disease was considered rare–and largely ignored except as a curiosity in medical schools and in-service training. There was little awareness of NET cancer in the general medical community–and even less awareness among the general public. It was thought so rare that in 1968 the US Congress had removed all funding for research into it and no one at the federal level had given it another thought until 40 years later.

I knew Jane had died because of ignorance.

That lack of awareness meant 40 years of virtually no research into the disease because of lack of money. People don’t donate money to diseases they’ve never heard of. Governments don’t dedicate money to diseases no one cares about beyond a relative handful of patients and their families. Neither does the cancer research establishment. No money means no research. No research means no treatments. No treatments means people die at the end of long periods of largely silent suffering.

Spend nothing, get nothing

We spent less than $2 million on Jane’s treatment and hospitalization in the last four months of her life. We spent even less on basic research that year. We spent less than a rounding error of a rounding error on what we spent on breast cancer on NET cancer research that year.

…40 years of virtually no research into the disease…

In 2010, we diagnosed about 10,000 cases of NET cancer in the US. About 105,000 were living with diagnosed disease. In the US, we had octreotide and it’s longer lasting form, Sandostatin for use in most forms of NET cancer. We had sunitinib and everolimus for pancreatic NETs.

Staring into darkness

None of those drugs offered a cure for the disease, just a hope for eased symptoms and slower tumor growth. If you were wealthy, or could otherwise scrape together sufficient money, you could fly to Europe for a radiation treatment called PRRT. It wasn’t a cure, either, but it could buy you some time and a better quality of life. If the drugs didn’t work for you, you could hope it would make a difference.

In 2010, we diagnosed about 10,000 cases…

For those who had been fighting NET cancer for a long time, 2010 was an improvement over what had gone before–but it was still a very dark time. For those of us just beginning to deal with the disease, darkness did not begin to describe what we were looking at.

Every personal watershed moment carries a personal cost. Jane's death changed the direction of my life. Some people say it changed theirs as well.
Every personal watershed moment carries a personal cost. Jane’s death changed the direction of my life. Some people say it changed theirs as well.

Awareness Month for NET: 30 posts in 30 days

awareness, Jane, NET Cancer Awareness Day/Month

Awareness: cost of being human in a world of cancer

My normal post rate is three times a week. That schedule has not happened for more than a year. When one of your best friends is dying, that happens. When you are recovering from surgery, that happens. When both happen at the same time, everything goes sideways. Awareness takes a back seat to those other needs.

If there are specific things you’d like to know about…

As I wrote in my last post, that’s pretty much the story off my life for the last 18 months. One of my closest friends learned in April of 2016 he had glioblastoma. He died July 1 of this year. In June, I learned I needed Mohs surgery for skin cancer on my face. I had that surgery in early August and it proved more extensive than any of us expected.

Recovery from loss, recovery from surgery

I am still recovering from that surgery, still recovering from the loss of my friend, still trying to make sense out of too many things, and still trying to aid the fight against NET cancer wherever and whenever I can. I’ve done craft fairs every weekend for the last month, helped organize a presentation the first night of Dana-Farber’s Visiting Committee meetings, and worked on a dinner that raised over $5000 for NET cancer research.

…everything goes sideways.

But neither my mind nor my body has fully recovered from the blows of the last several months. Losing my friend John brought back memories of Jane’s last days so starkly and brutally I’ve had to seek professional help. Recovering from the surgery requires nine–and sometimes 10–hours of sleep every night–sleep haunted by dreams of things that might have been.

The cruelest months

November and December are the two most difficult months of my year. Last night, Halloween, was one of our two favorite holidays. November 17 is Jane’s birthday. November 15 was the date of her heart surgery, November 13 the night we last shared a bed. November 14 I had to help her off the toilet for the first time. The night of November 17 Jane had her first carcinoid crisis–the day she was supposed to go to the step-down unit. She had two more of those–both of which put her in a coma–before the end of the month.

I am still recovering…

December started with bright hopes that disintegrated the morning of December 9. The next night, at 7:59, Jane died. Her wake was December 16, her funeral two days later. Truth be told, I haven’t been right since–I just cope with the tears better–put on a better face to the world. I’ve done grief groups and had some one-on-one therapy, to little real effect.

Awareness: This is Hell

People ask why, seven years later, I am still active in the fight against NET cancer, why I still visit with patients, follow the research, chair committees, raise money and bike and run and walk and do all the things I can think of to support research and raise awareness. The answer is simple: I know what loss feels like. It is a thing I would not wish on the darkest of the dark. It is Hell–and I am never out of it.

…I haven’t been right since…

Officially, NET Cancer Awareness Day is November 10. For me–and for the Commonwealth of Massachusetts, thanks to the efforts of a now deceased NET cancer friend–the entire month of November is NET Cancer Awareness Month. There is too much to say in a single post–too much people need to know about this disease, to know about the strides being made, to know about the resources that are out there, to know about what may lie ahead.

Awareness: A month of daily posts

So from now to the end of November, my plan is to create a new post every day. Tomorrow, we’ll start with a little history of the last seven years and how much has changed in that time. In the days ahead, we’ll look at resources for patients, caregivers, and for those in grief; we’ll look at what the latest research says about treatments in the pipeline, trials that are going on now–and trials coming in the future.

It is Hell–and I am never out of it.

If there are specific things you’d like to know about, you can respond here or drop me a line at walkingwithjane@gmail.com. I’ll try to honor any requests that come in as quickly as I can. But remember, I’m not a doctor and can’t give anything that looks like medical advice. For that, you need to talk to your doctor–a person who needs to be a NET specialist if you are going to get the best advice you can get. We’ll talk about that in the coming days as well.

The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following. Awareness of anything other than self is difficult under those circumstances.
The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following. Awareness of anything other than self is difficult under those circumstances.

Apologies for a long time absent

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Absent realities

Dear friends,

First and foremost, my apologies to all of you. I’ve been absent most of this year, for reasons I’ll share in a minute. I hope

The extent of the surgery is best seen in this photograph. It took over 100 stitches to close the wound. My mind was largely absent for the month following.
The extent of the surgery is best seen in this photograph, taken the morning after. It took over 100 stitches to close the wound. My mind was largely absent for the month following.

the rest of this year will be better. The rebuild promised in my last post has not happened, nor have I managed a single update since January. The rebuild is on indefinite hold. The rest…we’ll see.

This has been a difficult 18 months for me…

As some of you know, one of my closest friends was diagnosed in April of 2016 with a brain tumor. Shortly after my last post, he had the first of four strokes/seizures that necessitated lengthy hospital stays in Boston followed by lengthy rehab stints more locally. In late April, he entered Hospice. He died July 1. I served as one of the pall bearers at his funeral.

An absent recovery

 In early June, I had a biopsy done on a small red spot on my nose. The biopsy came back positive for basal cell skin cancer. That type of cancer is more annoying than dangerous, but the cancer needed to be removed. I had that surgery on August 8. Both the surgery and the recovery were supposed to be easy. They weren’t.

He died July 1.

Unfortunately, that small spot turned out to be the tip of a very large iceberg that extended across the right side of my nose and into the area just below the bone of my right cheek to a point about mid-way across my eye. It took four tries to get a clean margin and the wound required over 100 stitches to close. Those of you who follow my Facebook posts have seen the extent of the damage. The picture accompanying this post will bring the rest of you up-to-date.

Absent from training

My recovery time was—pre-surgery—measured in days. Yesterday marked five weeks since the surgery and I am still weak as the proverbial kitten, for all that the wound looks nearly healed. They tell me, given how extensive the surgery turned out to be, that I am doing very well and am somewhat ahead of schedule.

…the wound required over 100 stitches to close. 

In a little more than a week, I am scheduled to walk in the Boston Marathon Jimmy Fund Walk for the seventh time. I have no idea where I will be starting from, beyond that it won’t be in Hopkinton (26.2 miles). I’m hoping to start in Wellesley (13.1 miles), but even that has begun to look like a stretch. I do plan to be at the finish to greet as many of our team and group walkers as possible as they complete their walks.

Absent, but moving

Our fundraising efforts are making a substantial difference in creating the money for NET cancer research. We’ve helped persuade the powers that be at DFCI to make a greater investment in that research in the form of a new lab whose main focus is NET. And we are one of the cornerstones that created “3-in-3: The Campaign to Cure NET Cancer” whose aim is to raise $3 million in three years for NET research. You can learn more about that campaign at 3in3.org.

…even that has begun to look like a stretch.

In the months ahead, I hope to get back to doing the things that this site was designed to do. I have a piece that has waited months for me to edit on PRRT written by a patient that I hope to post relatively soon.

Absent friends

This has been a difficult 18 months for me on multiple levels. My friend’s slow decline and death took me back to Jane’s last days. My personal surgery has underlined that my own time is more limited than I would like. But it has also served to remind me that we all make a difference in the lives of others every day. It is up to each of us to make sure that difference is a positive one.
Pax et lux,
Harry Proudfoot

Reconstruction beginning on WWJ website

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Over the next few days, you may experience some difficulties with this website as we begin doing some reorganizing. The News/Blog connections should be fine, as nothing will change there.

However, using other sections of the website may get a bit choppy at times as some things may move to other sections, other links vanish, and some entire sections may go as well.

I haven’t done any serious housekeeping on some of these pages for more than a year. Information that is out of date will vanish. New information will be added–and everything that remains will get reorganized, hopefully in ways that will make things more accessible.

I hope to have the entire refurbishing done by the end of next week. Thank you for your patience in the meantime.

Remember the day where the pain resides

awareness, Caregiving, Death, Grief, Jane

I remember to forget forgetting

I lost track of the date over the weekend. It happens when you really don’t have a good reason to remember. But I don’t really need a calendar to find the tenth of any month. All I have to do is look at my behavior and how I’m feeling. My subconscious knows the monthly anniversary of Jane’s death even when my conscious mind doesn’t.

…the sounds of an empty house when half its soul is gone.

It really starts the night before. I avoid going to bed. When I get there, I don’t sleep. I know what Ebenezer Scrooge dreamed that night, but my ghosts visit me the tenth of every month. They are relentless. Someone asked me last month to write a piece about dealing with the failures and regrets after you lose your spouse. I want to answer that question as a last part of my series on being a caregiver. But I don’t have an answer.

Remember to forgive

Jane forgave me before she died. I know that because she said it. But I have yet to figure out how to forgive myself. Intellectually, I know I did all I could have done. I made the best decisions I could, given what we knew at the time. But emotional forgiveness is a very different story.

I avoid going to bed.

And I also know that even if I find a way to get my emotional side to accept and forgive, I will never be entirely whole. I wrestle with that part of the loss as well–and never more than on the ninth and tenth of the month.

I remember confusion

The good news is that I cope pretty well the rest of the month. I cook, I clean, I buy groceries and pay the bills. I go out to listen to music or see a play. I laugh. At times, I can even pretend for a few hours that everything is normal.

…I did all I could have done.

Last night, I buried myself in a book for six hours. I went to bed about 3 a.m. I woke up late, not knowing what day it was. I went to the kitchen and made six separate trips to the refrigerator to gather the ingredients for breakfast, interspersed with doing dishes, opening the drapes, and moving randomly from room-to-room to no earthly purpose. I dropped things. I couldn’t get my mind to focus and soon was berating myself for being stupid.

I remember why

Then it came to me: today marks 73 months since Jane’s death. It is the day my mind does not function, the day my body doesn’t work, the day I will say hurtful and destructive things to people without a second thought–and not know I’ve done it if they don’t call me on it. I am always a sick human being, but never more so than on the tenth of the month.  I should–and usually do–withdraw from the world that day.

I couldn’t get my mind to focus…

And so I did today. My only human interaction was with the folks at the flower shop where I bought the monthly bouquet for Jane’s grave. The cemetery was empty when I got there–and stayed that way. I put the flowers in the cemetery vase, then stood in the snow and the wind and talked to my dead wife for 20 minutes.

Cold memory

The clouds scudded across the sky. There is a storm coming in tonight that will melt all the snow. But I always find her grave a cold place. It felt that way before she died, as well. I can dress that stone any way I like, but the flowers do little to blunt the pain.

The cemetery was empty…

I count my other losses while I am there. My mother-in-law, dead of pulmonary fibrosis, is buried there with her husband, whose body simply shut down over the course of a weekend. My mother, who died of Alzheimer’s, and my father, who died of a stroke, have no grave. Their ashes are scattered together in my sister’s garden in Seattle, feeding a tree that plays host to hummingbirds throughout the year.

Remember the others

I think of all the NET cancer patients we have lost since Jane’s death, knowing that barring a major breakthrough, we will lose more in the years ahead. I wonder if I have done all I can to change that future, knowing even if I have, it is not nearly enough. And I think of all the people I have lost to other forms of cancer and other diseases–lives cut short by things I could not cure or prevent.

The clouds scudded across the sky.

Today, I got a note from a man who lost his wife to NET cancer on Christmas Eve. She died in his arms, as Jane died in mine. I gave him what little comfort I could, knowing there is nothing I can do or say that will make any of what he faces feel any better. You think there is nothing worse than that feeling of absolute helplessness when you hold someone in your arms knowing there is nothing you can do beyond what you are doing–and that it does not seem like enough.

The days that hurt

But it’s not the day they die that really grinds on your soul. Nor is it the day you bury them. You have things to do those days–and people to hold your hand. It’s all the days that come after–all the days you wake up alone, live alone, and go to bed alone. If you’re lucky, as I have been, you find meaningful work to do. If you are really lucky, as I have not been, someone comes into your life to share that burden with. But you never forget–and it never really stops hurting.

She died in his arms…

You learn to cope. You learn to show the face to the world it wants to see. And you talk with the others who have made–and are making–the same journey. You share a secret those who have not lost never really come to understand. And you move forward, as best you can, through a world that has no idea–and no vocabulary that will let them understand until they experience it themselves. And it is, if you have a heart, something you would never wish on anyone.

Remember the now

The rain has begun. The droplets run down the window across from me. I can hear the clock ticking over my shoulder, the rumble of the furnace in the basement and the sound of my own breathing when my fingers pause on the keys. My stomach grumbles.

You learn to cope.

These are the sounds of an empty house when half its soul is gone. It has been the background noise of my life for 73 months. It is why I fight so hard to end the things that have cost me so much–and why I keep fighting six years after I lost everything that mattered.

I remember Jane's love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.
I remember Jane’s love of the natural world. Her memorial garden centers on stone, but is surrounded by wildflowers, bees, birds, and butterflies.

Mission remains: cure NET cancer now

awareness, Fundraising, Goals

Original mission

I had a very specific mission and role in mind for the Walking with Jane when we started. No one, beyond those afflicted with the disease, seemed to know the disease existed. Basic research lagged for lack of money. Too many patients were stuck with doctors supervising their care who knew less than the patients about the cancer they faced.

Lives depend on it.

My plans to quickly create a national organization on the scale of the Cystic Fibrosis Foundation or MS Foundation were overly ambitious. I quickly discovered that fundraising, raising awareness, writing pamphlets, keeping up with the latest research and maintaining a comprehensive website each required my full-time attention. I could recruit people to do pieces of those jobs periodically, but the brunt of the effort fell on me.

Evolving the mission

And I was mired in my own grief and the effort required to maintain the place I lived. I learn slowly, but I eventually realized my initial vision could not be reached in the timeframe I imagined. Instead, I envisioned  a loose coalition of regional foundations each aimed at developing a relationship with specific NET cancer centers in order to support both research and awareness.

Too many patients were stuck…

I don’t know if that idea is any more workable than my original thought. Increasingly, however, I’ve come to see Walking with Jane as a pilot project to demonstrate how such a partnership with a regional cancer center might work. Over the last 15 months, I’ve begun to see the first fruits of that vision. I detailed the major successes of that partnership in yesterday’s post.

Mission goals for 2017

The purpose of today’s post is to lay out our goals for Walking with Jane and that partnership in the year ahead, and sketch out a rough plan for what we will do to make those goals a reality. Those goals lie in three specific areas: fundraising, awareness, and evangelism.

…I’ve begun to see the first fruits of that vision.

Evangelism, for lack of a better word, is the toughest unaddressed nut we, as a community, face. We’ve made significant strides since 2010 in making medical professionals more aware of NET cancer. New patients have a range of real and online support services available that were hard to find even where they existed six years ago. We do a decent job of helping patients find those resources that exist. And fundraising in the US has improved markedly.

The unspoken mission

But outside of medical schools and NET cancer patients and their caregivers, NET cancer remains largely unknown. This fall, I did five craft fairs, all in the same local area. Despite almost annual local newspaper coverage, I encountered no one who had heard about NET cancer from anyone other than me. As compelling as people tell me Jane’s story is, even locally, we haven’t gained much traction in the world outside the NET cancer community.

…fundraising, awareness, and evangelism.

Honestly, I’m not sure how to raise general awareness of NET cancer in the mainstream community. I’ve written scripts for PSAs–even produced two or three over the last few years–to no visible effect. I’ll write some scripts for radio and try to get them aired on college radio stations in the University of Massachusetts system this year, hoping they get picked up elsewhere as a result. It’s slender reed to hang much hope on, but it’s the reed we’ve got.

Finding other reeds

As part of the 3-in-3 Campaign, we’ve also put together a speaking program aimed at the general public that we originally designed for potential corporate sponsors. I plan to put out a letter this month to civic groups around New England to prospect for groups willing to listen to that message. I think it would travel well, if you know of a group that might be interested.

…I’m not sure how to raise general awareness…

I’m also working on grant applications to get the latest editions of two pamphlets I’ve written with our friends at the Dana-Farber Cancer Institute into the offices and hands of every doctor in New England, for a start. If I can find the funding, we’ll reach out beyond that. If we could get those pamphlets into a position where even non-NET patients could see them, we might increase name-recognition, which would help with the evangelism piece, as well.

The awareness mission

Equally important is the need to continue to raise awareness about NET cancer and the latest treatments and research among doctors and patients. The distribution of those pamphlets really has as its central purpose that kind of awareness. But there are other things we can do to improve that side of things, as well.

I’m also working on grant applications…

One of my real failures the last couple of years has been maintaining the non-blog portions of this website. Too much of what is on the other pages is dated. Over the next three months, I’m going to go through the site and do some extensive renovations to the information and links that are here. That will include linking some of the most useful blog posts here and elsewhere that underline patients’ real experiences with the increasing number of treatments and trials underway.

Repair and revision mission

Some of the most referenced blog posts are not things I wrote. Virtually every day, for example, someone accesses the piece written by a patient about their personal experience with chemo-embolization for liver mets. It is among the first things people see when they google that procedure.

But there are other things we can do…

Frankly, we need more posts like that. Patients and caregivers both are thirsty for that kind of information. So here’s my invitation: if you have an experience with a specific treatment or trial, write it up and send it to me at walkingwithjane@gmail.com. I’ll work with you to make it the best it can be. Then we’ll post it here on this blog and create a link for it from a page on treatments people have experienced.

Changing reality

If you have already written such a post somewhere else, send me a link and I’ll look at it with an eye to including it. I’m particularly interested in experiences with PRRT in the US and telotristat globally. Pieces on Afinitor would also be useful, as would experiences with various types of surgery. I also plan to expand the links we already provide to other blogs

Patients and caregivers both are thirsty…

And we all need to tell our stories to the broader community whenever we get the opportunity. That can take the form of talking to your local newspaper or TV station, talking to church and civic groups, or just sharing our stories with the people in the neighborhood. Nothing will change without each of us being the squeaky wheel.

The funding mission

Both evangelism and raising awareness will help with the third piece of the NET cancer cure puzzle: fundraising. People don’t give money to causes they’ve never heard of. And research costs oodles of money. One small lab costs close to $3 million a year to run. Drug companies will pay for drug trials, once they are convinced the drug will work. Governments will pay for research when they are sure of the outcome. But basic research funding comes from individuals–and virtually no one else.

…we all need to tell our stories…

Over the last few years, Dana-Farber has worked on unraveling the NET cancer genome. They collected over 1000 specimens from NET cancer patients and analyzed the DNA of each. Neither government nor pharma put up the money for that effort. That came from people like me and you. Our Jimmy Fund Walk teams raised a piece of that money, $100, $50, $25, even $10 and $5 at a time.

Raising the stakes

Last year, the 3-in-3 Campaign raised about $1 million for NET cancer research. Next year, we need to raise another $1.5 million to help fund the new lab that $1 million inspired. Getting there won’t be easy–but nothing worth doing ever is.

And research costs oodles of money.

The 2017 Jimmy Fund Walk registration begins January 4. I’ll spend that January 4 setting up the NETwalkers Alliance team page and the #cureNETcancernow group’s page, as well as my personal page. I’ll set my personal goal for the Walk at $15,000 this year. Our team goal we’ll set at $100,000. Our group goal will be $250,000. I’m hoping to double the $160,000 we raised last year, but will wait on moving that number up until I have a clearer picture about where things are.

Extending my personal mission

My personal Walk goal is a bit lower than it usually is. That’s because I’ll create a NETriders Alliance team for the PMC Challenge this year. My hope is to gather together people who ride bikes rather than walk, to raise money that way for NET cancer research. I’ve never been one to lead from the sidelines, so… And just like in the Walk, every penny I raise will go to NET cancer research. Last year, people riding for NET cancer to support the research done by the Program in Neuroendocrine and Carcinoid Tumors raised about $50,000 total. My hope is we will double that amount this year.

Getting there won’t be easy…

In addition to my annual pledge, the Walking with Jane Fund for Neuroendocrine Cancer raised another $1700 last year. I’ll work to publicize that fund more widely over the next year, in hopes of doubling that amount in 2017.

Expanding the mission

And I’ll continue to work with groups of patients and caregivers who are also actively raising money for NET cancer research. I’ll expand the number of craft fairs I present at and expand the range of hand-crafted items we offer, with every penny of every purchase going to NET cancer research. I’ll write fundraising letters and share them with anyone who wants to use them. I’ll help organize and/or attend and/or speak at events to raise money and awareness for NET cancer research anywhere within driving distance–and for the right return on investment I’ll go further.

My hope is we will double that amount this year.

In 2010, we raised under $2 million to support NET cancer research in the entire US. In 2017, we need to raise that much in New England alone. We need to see that kind of continued improvement in every region in the country–and at the national level as well.

Slaying the dragon

I’ll do everything I can in the year ahead to make all these things happen. For six years, my mission has been the defeat of this disease. But I am only one person. We need every person who has ever suffered the loss I have, to make it their mission. We need every patient with a story to tell to do likewise. We need every caregiver to do likewise. We need to inspire every doctor, nurse and researcher to do likewise.

…I’ll go further.

Together, we can slay this dragon. Lives depend on it.

We could not do any part of our core mission without the volunteers who run our fundraisers, stuff envelopes and manufacture hope. We gather that core group together every summer to celebrate our successes.
We could not do any part of our core mission without the volunteers who run our fundraisers, stuff envelopes and manufacture hope. We gather that core group together every summer to celebrate our successes.

End of year report for 2016 for Walking with Jane

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

A year of ups and downs

2016 was a busy year, both for Walking with Jane and for me personally. As an organization, we made significant progress on a number of fronts, but lagged behind where I would like us to be in other areas. As an individual, I continued to struggle with my personal demons. Again, there were moments of significant progress—and moments of stagnation and regression. Grief continues to hammer at my heart, but the blows are softer and less frequent.

…a future with less hurt and more hope in it

As many of you know, Dana-Farber asked me to get involved with a fundraising campaign aimed at NET cancer in late August of 2015. We launched that campaign December 9 of last year with a presentation in Boston. I now officially chair that campaign–3-in-3: The Campaign to Cure NET Cancer. Our goal is to raise $3 million over three years for NET cancer research. As this year drew to a close, we were closing in on our first $1 million. That work has taken me to Boston on a regular basis to meet with doctors and researchers and professional fundraisers to help plan and execute that effort. It’s been a positive learning experience.

NETwalkers and #cureNETcancernow

Part of that effort involved, as always, our NETwalkers Alliance Jimmy Fund Walk team. For the first time since I took over as captain, I was not the top fundraiser on the team. That honor falls this year to Jenaleigh Landers, who has been there from the start. Her golf tournament in memory of her father has always put her in the second spot in recent years. The tournament was even more successful this year. Total, our relatively small team raised just over $39,200.

…closing in on our first $1 million.

In addition, we helped launch the first disease-specific Walk group, #cureNETcancernow. The group had four teams and raised just short of $160,000 for NET cancer research. We had nearly 200 NET cancer walkers join in that effort. Only the Dana-Farber employees group had more team members or raised more money—and most of the other groups were run by major companies like State Street Bank.

Ups and downs of a start-up effort

The result of those efforts—and those of a number of people riding for NET cancer research in the Pan-Mass Challenge–is Dana-Farber adding a new gastrointestinal research lab whose primary focus is NET cancer. We were also listed among the funders for a paper on NET cancer co-authored by Dr. Jennifer Chan, who was Jane’s oncologist at Dana-Farber.

…we helped launch the first disease-specific Walk group…

But tasks connected to the 3-in-3 Campaign forced me to cut back on some of the other things Walking with Jane has done over the last five years. Normally, I do two mailings a year for that, neither of which happened. I went three months without posting anything new on our website. Other things slid as well. Start-ups always take more energy than I anticipate, but I hope to get back to a more regular schedule on these other things soon.

Personal successes and losses

Not all of that had to do with the Dana-Farber campaign, though. On the good side, I spent six weeks again this summer teaching journalism fundamentals to high school students in a summer program at BU. The commute is a killer, but working with young people reminds me there is more to life than cancer.

Start-ups always take more energy than I anticipate…

And I needed that reminder especially this year. Two good friends were diagnosed with cancer this spring. Both are in treatment and doing well, by all accounts. But I also lost two NET cancer patients over the summer I had become close to. Their deaths underlined again for me why what I am doing matters—and why I need to keep doing it.

Keeping myself sane

I continued my ongoing landscaping and other house projects. The yard still looks like it’s under construction–because it is–but I finished the patio project, the back half of Jane’s memorial garden and the garden, back, front, and side pathways. I also got a good start on installing a small orchard and another pair of garden beds, while repairing the sinkholes that developed just after Jane died. I’m doing it all by hand, one shovelful at a time, which keeps me in shape and gives me a break from all the mental exercise my other projects force on me.

…why I need to keep doing it.

Indoors, I redid the dining room and bedroom and have a clear vision of what the finished study will look like. I took Jane’s chair in last week to be re-upholstered for that room. Two-thirds of the basement is cleared out and, in the next month or so, I hope to have the electrician in to do some wiring down there.

A year of rediscovery

I’ve also done a ton of reading, some of it related to cancer, but much more of it just for fun. I’ve rediscovered photography, done some writing, done some walking, lost 30 pounds, put 15 back on—bloody post-Marathon issues continue—and tried to build a life that makes sense again. Life feels both more and less empty.

…one shovelful at a time…

The sixth anniversary of Jane’s death was December 10—and it was awful. But I put up the tree for the seventh time without her and I felt good afterward. Somehow something lifted off of me and I felt like a human being again. Maybe Year 7 will finally see me healed enough to think about a future with less hurt and more hope in it.

I hope this finds you and yours in good health and spirits and that the year ahead will prosper you in ways great and small—and in ways you don’t see coming. Go have an adventure. I hope to have several.

Pax et lux,

Harry

Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.
Money we raised this year was instrumental in creating a new lab at Dana-Farber that will have NET cancer as its main focus. The lab will do other types of gastrointestinal cancer research as well.

Nurture heart, nurture patients, nurture science

awareness, Goals, Grief

A bit of ivy

We lost one houseplant when Jane was in the hospital. It was an ivy plant Jane had trained to a topiary mold in the shape of a heart. She started it our first year of marriage. Its death marked her death and the shattering of my own heart.

Our job is to nurture…

I had another bit of ivy in another pot. It was a single strand, perhaps two inches tall. I scooped it from that pot and placed it at the base of the heart form. It grew with painful slowness, becoming for me a symbol of the state of my own heart.

A bit of heart

When it filled half the form, I wrote a piece about it. That was almost two years ago. This summer, it finished its first circuit. It’s really taken off since then. Today, it sits on its perch, fully formed and healthy.

It grew with painful slowness…

I wish I could say I were as fully healed. I wish I could say the end of NET cancer stands clear on the horizon. I wish I could say we had the funds we need to make that moment happen. I can’t say those things.

A bit of healing

I feel both better and worse. I am no longer numb. I can feel again. Unfortunately, much of what I feel is the real grief the numbness kept from overwhelming me. I sense now the deep and truly serious damage my soul absorbed when Jane died. For five years, I felt virtually nothing. Now, at last, the pain is real. But with the pain also comes a strange new sense that I may survive what has happened. I sometimes feel joy again, albeit never for long. My laughter feels real again. And so do the tears.

I wish I could say I were as fully healed.

I look at that plant every day. Its growth moved so slowly for so long that some days I wondered why I bothered. Nothing seemed to change, with it or with me. And then it reached critical mass and began to grow and fill at a rapid pace.

Critical mass

It is not what it was before Jane went into the hospital. My own heart has not fully healed either. Neither will ever be what they once were. But they will grow so long as I can nurture them.

… I may survive what has happened.

NET cancer research has not come as far as I would like these last six years. Nor has the funding for that research. But we know much more than we did–have better funding than we did. I don’t know–any more than I knew for the topiary–what the tipping point will be. I know only that it is there–know only that once we cross it NET cancer may unravel very quickly.

Nurturing the future

Our job is to nurture the science, nurture the patients, nurture the caregivers, nurture the researchers, until we have the knowledge we need to put NET cancer on the same shelf with small pox and polio.

…we know much more than we did…

The day will come. May it come soon.

The topiary heart I began after Jane's death has filled its form and continues to fill in. The nurture of it has helped me nurture--and monitor--the state of my own heart.
The topiary heart I began after Jane’s death has filled its form and continues to fill in. The nurture of it has helped me nurture–and monitor–the state of my own heart.