All posts by walking with jane

How long it takes to grow a new heart

Death, Grief, Jane

The topiary heart

Jane and I loved house plants in the winter. They brightened things. Jane got into creating topiaries at one point and created a heart from an old coat hanger and an English ivy. When Jane was in the hospital, I rarely got home, but when I did I made sure everything got a good drink. When I came home after she died, we had lost just one of the plants–the topiary heart. The symbolism was not lost on me.

…I have learned, again…to let the dying go.

But in another pot there was a single tiny sprig of ivy that had survived. I took the heart frame and moved it into that pot. I have tended it carefully since then. Forty-nine months after Jane’s death that single strand has grown to cover 4/5s of that frame. It is not as dense as it was when Jane was alive–that will take a couple of circuits–but it has nearly filled the frame.

The real heart

I tell myself my heart will finally be healed, perhaps, when that frame is filled again with green life. A couple more sprigs have appeared in that pot. Eventually, they will grow long enough to join that first strand and strengthen that heart.

The symbolism was not lost on me.

Not long before Jane’s cancer came to light, I was reading a story about the Dragonriders of Pern. One of the Riders loses his dragon and the children ask why he is so sad. They are told that if a man or woman loses their dragon they lose half their heart. One of the children tasks how long it takes for the missing piece of heart to grow back. None of the adults have an answer.

The power of symbol

When Jane died, I suddenly knew what it was to have only half a heart–and I had no idea how long it would take for that piece of my heart to grow back–or if it would do so at all. That silly topiary tells me each day how to regrow my heart–and reminds me every day that it is possible. It takes patience and careful tending–but it can be done.

None of the adults have an answer.

I don’t expect ever to love again in the way that I loved Jane. But I know that, some day, my heart will be fully healed. It will not be the same as it was before. There will be scar tissue there that is never quite right. A part of me is dead and beyond recovery. But I will grow strong again and I will love again. Truth be told, I have never stopped loving–even in the worst hours of grief. I will love Jane until I die–and even then I will still love her.

Lessons of love and death

And I will love the world and every creature in it–because I always have. The pain of loss makes us forget our true nature at times–but forgetting does not mean that nature vanishes or ceases to be. When we are born, the agony of birth makes us forget where we came from. But that pain does not leave us empty of who we are, nor does it change where we came from or where we will go.

A part of me is dead and beyond recovery.

Jane’s death cost me a great deal. It has taxed me physically, mentally and emotionally to the limits of my strength–and sometimes it has seemed like beyond that. And it still hurts–hurts more than anyone who has not had a similar loss can know. But it has made me a better man than I was. It has made me more compassionate, more patient and more driven to be of help than I was before. I understand now things that I really only knew in theory before–as much as I truly believed I understood them.

The price of a new heart

We each have a road to walk and things to endure. We learn from every thing and every being we encounter–and from every experience. Jane paid a hideous price for the knowledge she gained from her illness–and I have paid a hideous price for what I learned from losing her and what I have faced every day since. I cannot dishonor her sacrifice or my own by turning my back on what I have learned–or by failing to share those things with those who need that knowledge.

Jane’s death cost me a great deal.

I have learned what it takes to love those around you when what you really want to do is hate them for the things they still have that you do not–and that you will never likely have again. I have learned what it takes to hold a broken soul in your hands and will it back to life and health. And I have learned, again, in Ursula K. Le Guin’s words, to let the dying go. Most importantly, I have learned what it is–and what it takes–to grow a new heart.

Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.
Rebuilding even a topiary heart does not happen overnight. Four years after I restarted the heart Jane once made, that project is still not finished. But it mirrors the progress of my own efforts to grow a new heart.

WWJ goals 2015–Part 3: More money

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

Raising money

The hardest part of this job is asking people for money. I am not very good at it and am embarrassed by the need to do it every time. The second hardest thing I do is ask others to help with raising money. I know most people hate doing it. It makes me feel like a panhandler every time I ask people for money–and like Fagan every time I ask others to do so.

…we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel.

As I said in my last post, though, killing carcinoid/NETs requires we find large amounts of money–and that we find it every year. Further, what we have raised so far comes nowhere near the amount we really need to make a cure a reality in the relatively near term. There are people dying of this disease every day out there. I really want that to stop.

Boosting our Jimmy Fund Walk performance

Last year, our Jimmy Fund Walk team fielded a team of 48 walkers who raised a combined total of nearly $70,000. As good as that was, we need to do better. As I write this, the goal listed on our site for 2015 is $80,000. It is a safe number, I think. I set it in November before I had a series of meeting with members of the Walk staff and people at the Program for Neuroendocrine and Carcinoid Tumors. Now, what I really hope we can do this year, is break $100,000.

…killing carcinoid/NETs requires we find large amounts of money…

Over the next few months I will meet with members of two of the higher performing teams in the Walk and in the Pan-Mass Challenge. I intend to pick their brains about how they have done what they have done and try to apply those lessons to our own team.

Helping team members reach their goals

My hope is we will also do a better job of supporting the fundraising efforts of our team members. I have more than a little experience, at this point, in marketing events. It’s time I shared that knowledge more broadly in support of events run by other team members. If I’ve learned one thing over the past four years, it is that I cannot do everything all the time.

…what I really hope we can do this year, is break $100,000.

Jenaleigh Landers, one of our team captains,  got help from some of her late father’s friends last year who wanted to put on a golf tournament in his memory. The Hank Landers Memorial Golf Tournament in northeastern Massachusetts raised about $6000 last year. And it has significant growth potential, given what Jena and her friends learned from last year’s efforts. Their success has inspired me to consider trying two new events–a golf tournament and a mini golf tournament–in the Greater Fall River-New Bedford area this summer.

Backing creative ideas

But we also need to help people use their own creativity. One of our team members last year raised a considerable amount of money through the sale of small zebra themed sculptures made from polymer clay. She also made stitch markers for knitting projects and a range of other items. In total, between those efforts and others, she raised nearly $7000 for the cause.

Their success has inspired me…

My letter-writing efforts have generated as much as $6000 a year. Each year, I offer that letter to others on the team to use with people on their Christmas card lists. Very few people use it. But if only ten people did so, the results for their fundraising efforts–and for our team–could be significant.

What is your special talent?

Each year, I also seek sponsors for our team t-shirts. I tell team members the prices and provide a letter for businesses they may know. I routinely raise $1000 myself from that effort. But there is room on the shirt for another $1200-$1800 worth of sponsorships.

…we also need to help people use their own creativity.

Every person has a talent of some kind that could produce a significant sum of money for our Walk team efforts. We need to help people do that. Some of those things require more effort than others. I’ve heard people on other teams talk about yard sales, product parties, and softball tournaments. It is all a question of what people are willing to take on.

Starting with easy

My advantage is that I am retired and have more time than many others do to undertake larger and more complex projects. But my experience is that often the easiest projects raise more money than the more complex ones do.

…I also seek sponsors for our team t-shirts.

A dinner, for example, requires lots of people and lots of effort spread out over weeks. My letter-writing campaign, which goes out to 400+ recipients, takes a couple of afternoons once the letter is written–and a couple of hours if I have help stuffing the envelopes. The dinner might gross $2000 and net about half that. The letters generally gross $3000 and net about $2400 once the stamps and envelopes are paid for.

Recruiting more Walkers

The first task in reaching that $100,000 Boston Marathon Jimmy Fund Walk goal is simply to help those already committed to the team to raise more money. The second task is to recruit more walkers. My goal is to build the team to 80 this year. That is a more complicated task.

…often the easiest projects raise more money…

But we will have more support from both the Walk team and the Program in Neuroendocrine and Carcinoid Tumors than we did a year ago–not that we didn’t have their support before. For example, the Program has just launched a newsletter for NET cancer patients at the Dana-Farber Cancer Institute. Our NETwalkers Alliance team and its activities will get regular coverage in that publication. It will not do any active recruiting for the team–there are ethical issues involved in that–but just the knowledge that a team exists should bring more people to our door.

Building momentum

We will also try to encourage people on both the clinical and research staffs to become more involved with the team. We will try to set up tours of the DFCI facility and labs for team members and perspective team members through the efforts of the Jimmy Fund Walk team. And we will get local media involved wherever we have team members through interviews and press releases. In addition, we have launched a NETwalkers Alliance Facebook page where both team members and the general public will be able to learn about our efforts.

My goal is to build the team to 80 this year.

Finally, this week, we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel. That program will have regular updates on NETwalkers Alliance team activities to support everything we are doing, in addition to providing news about NET cancer research going on at DFCI and elsewhere, as well as what other groups are doing to raise money for NET cancer research.

(Editor’s Note: While the Boston Marathon Jimmy Fund Walk is one of our major initiatives in our efforts to raise money for research into NET cancer in the coming year, it is not the only effort we have made a commitment to, even at Dana-Farber. In the next part of this series on goals and planning for 2015, we’ll look at the other NET cancer specific money efforts on our agenda.) 

We have walk team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.
We have team members starting from every point on the Boston Marathon Jimmy Fund Walk route. Our Walkers include caregivers, patients, friends and researchers. We all want to find the money that will help fund a cure for NET cancer in all its forms.

WWJ goals for 2015 Part 2: Money

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

Why money matters

Walking with Jane does not do medical or scientific research. We try to help create the funds that make research possible. Research requires four things, three of which cost oodles of money. The fourth doesn’t cost money directly, but money spent wisely on the other three can help create the fourth.

She wanted me to have an enjoyable retirement.

Every piece of research starts with a question or an idea. We have hundreds, perhaps thousands, of good questions and ideas about cancer, how it works, and how to cure it. Unfortunately, we only have enough material resources to fund less than five percent of those good ideas. The government won’t fund an idea unless the bureaucrats are fairly certain the idea will work or that the question will lead directly to a cure. Pharmaceutical companies will only fund trials when they are fairly certain the drug will work and that they will be able to turn a profit on it when it does.

The price of counting beans

Once-upon-a-time–when I was very young–American companies took a long view of success. Bell Labs sponsored huge amounts of research purely out of curiosity. Other companies did the same. They believed you could never be sure what new set of questions or ideas might lead to the next telephone or incandescent light. The graphical user interface (GUI) that we all use every day on our computers originated in the Xerox research lab. Then the bean-counters arrived and insisted companies worry more about next quarter’s profits than longterm success.

Every piece of research starts with a question or an idea.

Once-upon-a-time–when I was very young–the federal government was willing to fund basic research–research into things we didn’t have a clue where they would lead or if they would prove useful. We created nuclear power and sent people to the moon. Then the bean-counters took over.

Why what we raise matters

Today, real fundamental research funding comes from private charitable donors more than from anywhere else. I know I lack the knowledge necessary to decide what research money should be spent on. Places like the Dana-Farber Cancer Institute, the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation, among others, have people with good ideas that need to be funded. They have committees with expertise I certainly don’t pretend to have that review proposals and figure out what ideas make sense to look at and which ones don’t.

Then the bean-counters arrived…

Our job is to create the resources that will allow those groups to fund as many researchers and research ideas as possible. We help provide the people, the space and the equipment and supplies that are necessary to answer those fundamental questions that will lead to a cure for NET cancer.

A personal investment

Over the last four years, I’ve donated a substantial amount of my income to the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute through the Walking with Jane Dybowski Fund.  In addition, I’ve personally contributed another significant amount to that fund through my own donations to my Marathon Walk.

Our job is to create the resources…

I’ve also donated another chunk of my income to the Caring for Carcinoid Foundation and to the Carcinoid Cancer Foundation. We won’t discuss the comparatively small amounts I spend on things like the rent for this website nor the hours I spend writing for it and trying to keep up with the research and maintenance.

Paying the price

I am not a wealthy man. I am a retired school teacher. I live frugally: I make most of my meals from scratch at home; I bake my own bread; clean my own house; do my own laundry; keep the thermostat set at no higher than 68 degrees; grow my own vegetables eight months out of the year; clip coupons and watch for sales.

I’ve donated a substantial amount of my income…

I don’t say theses things to brag or to earn your sympathy. I say them to demonstrate how seriously I take the battle against carcinoid/NETs. Eventually, I know I am going to miss the money I have invested in this. I know the good health I enjoy today will likely be gone by the time we find a cure and I can relax and enjoy my retirement. But none of that matters to me. NET cancer took my beloved from me. I will do all I can to keep it from stealing the lives–and futures–of anyone else.

The cost of a cure

But I also know that what I have personally done the last four years financially is a drop in the ocean compared with what we need to truly come up with a way to kill carcinoid/NETs–to remove it permanently from Death’s quiver. It would be so easy to simply write the checks once a year and move on if I did not know how expensive finding the answers to this cancer are likely to prove to be. Jane’s final days haunt both my dreams and my waking hours. But the face isn’t always Jane’s that I see. Rather, it can be the face of any of the NET cancer patients I have met these last four years.

I am a retired school teacher.

Teams I’ve captained the last four years have raised $110,000+ for NET cancer research and another $20,000 for general cancer research and patient support for the American Cancer Society. That’s about what I made my last two years of teaching–total. So one part of me thinks that’s a huge pile of money. But the conservative estimate for what a NET cancer cure will cost to find is $100,000,000. In those terms, we’ve done nothing.

The cost of doing nothing

About 15,000 people will learn this year that they have NET cancer. For many, it will be the end of a years’ long search to find out what ails them. Between 3000 and 5000 will learn they have it because of the advances in diagnostics made over the last four years. All will potentially have the opportunity to use drugs and other treatments we did not have four years ago. But none of those treatments will offer them a cure.

…one part of me thinks that’s a huge pile of money.

About 12,000 people will die of NET cancer they know they have this year. Their deaths will look very much like Jane’s death. Their spouses will suffer the same things I have suffered. Over time, the number of people dying who know they have NET cancer will increase as we get better at recognizing what the disease is. If we do nothing, only that will change. Without a cure, 33 deaths a day will become 40 deaths a day in a very few years.

Why this matters to me

I started this piece planning to talk about our plans to raise money for research and awareness in 2015. But then I realized I needed to provide some background about why raising money matters–and where the money we raise goes–before I started telling people about what we hope to do and how people can help us do it.

About 12,000 people will die of NET cancer they know they have this year.

Jane told me before she went into the hospital what she wanted me to do if she died. She told me not to mourn–or if I did, not to do so for long. She wanted me to move on with my life. She wanted me to forget about her cancer. She wanted me to have an enjoyable retirement. I’ve disobeyed her on every count except putting up the Christmas tree every year. It turns out I can’t move on until the kind of cancer she had is no longer a threat to anyone. Together, we can all make that happen.

(This is the second part of a series on Walking with Jane’s goals and plans for 2015. In the next part, we’ll discuss how much money we will try to raise and how we will raise it.)

We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.
We walk to fund the research that will let us reliably detect and reliably cure NET cancer in all its forms. You can join our NETwalkers Alliance team or make a donation here.

  

 

WWJ goals for 2015 Part 1: Awareness

Goals, Marketing NETs, NET Cancer Awareness Day/Month, ,

The zebra’s tale

I had a very different plan in mind when I got up yesterday morning. But that was before several sources reported the possibility that ESPN’s Stuart Scott’s cancer was carcinoid/NETs. My response to that was to shelve the piece on goals for Walking with Jane in 2015 I was working on and pursue the more timely story that seemed to be evolving. For a time, it appeared reporting on Scott’s cancer was following the all-to-familiar pattern we experienced after Steve Job’s death.

…hard work is the road to longterm success…

By the end of the day, it seemed likely those early reports were incorrect. Rather, it now appears Scott had a form of cancer even more rare than NETs. If NET cancer is a zebra, the best explanation of the cancer Scott appears to have had is that it is a polka-dotted unicorn. Given what I know of doctors’ responses to NET cancer, I can hardly imagine how difficult Scott’s interaction with his doctors may have been, right up to the moment of his emergency surgery in 2007.

Job one: raising awareness

The entire experience underlined for me how important it is that we raise awareness for all the zebra diseases out there. Last year, thanks to the ice bucket challenge, Lou Gehrig’s Disease landed on the map with a bigger splash than even when he made his announcement that he had ALS. If nothing else, people have now heard that name–and one hopes many more know the symptoms of the disease than did so a year ago.

…a polka-dotted unicorn.

Every rare disease needs dedicated advocates working to raise awareness of the disease among both medical personnel and lay people. We need to find ways to get primary care doctors to take the possibility that a patient may have a zebra more seriously than many do. Almost daily, I encounter patients whose doctors poo-poo the idea that they may be looking at a case of NET cancer. They sometimes refuse to test for it, even in the face of considerable evidence that it may be the culprit in a patient’s suffering.

The doctors’ problems

I don’t blame them for their ignorance or their actions. Primary care doctors face an overwhelming task. There are tens of thousands of diseases with hundreds of thousands of symptoms, many of which overlap with several different diseases. No human being can truly be a master of every disease. Specialists have it easy by comparison.

Every rare disease needs dedicated advocates…

But even specialists face significant problems. There are thousands of types of cancer. They can become expert in a handful and have significant knowledge about a number more. But we become most expert at what we most often deal with. If you see one case of NET cancer over the course of a career, it is unrealistic to think you are going to spend the time becoming an expert in it. You know lung cancer, breast cancer, prostate cancer, colon cancer, and pancreatic cancer well because you see them most often.

Building on the past

Last year, with Jennifer Chan and Matt Kulke, I did two shows on NET cancer on Doctor Radio on Sirius XM. We hoped to reach doctors and patients with more knowledge about the disease and its treatment. My hope is that we will return to that program again this year.

There are tens of thousands of diseases…

Radio could give us the ability to reach more folks than we do now. I know many of you have contacts in that world. Some of you have even made appearances on radio broadcasts to talk about NET cancer. I want to encourage regional foundations to exploit those contacts. We have several doctors who have expressed a willingness to do things similar to what we have done with Doctor Radio. And I am willing to do as many radio appearances as people want me to do.

Audio and video podcasts

But we need to do more. Starting this month–I hope this week–Walking with Jane will launch a 5-10 minute audio podcast once a week on our YouTube Channel. That podcast will touch briefly on the latest research on NET cancer and events scheduled by the various NET cancer foundations and patient groups. The program will not pretend to be more than a headline service, though we will find a way to provide links to more in-depth coverage of those stories we cover.

Radio could give us the ability to reach more folks… 

In addition, we will launch a regular video podcast once a month that will include a five-minute news summary similar to the audio podcast, as well as more detailed interviews with doctors, researchers, foundations and patients. We hope the video podcast will air once a month and run 20 minutes or so.

Expanding offerings on walkingwithjane.org

Much of what I write here has an editorial flavor to it. My hope is to provide more hard news in this space about NET cancer in the coming year. I also need to recruit patients and caregivers to help provide more of the content here. If you are a patient interested in sharing your experiences with your treatment here on a regular basis, I need to hear from you. If you are a caregiver–professional or layperson–I’d like to provide space for those stories here as well–and I want to hear from you, as well.

The program will not pretend to be more than a headline service…

I have come to the realization that I am trying to do way too much on my own–especially as I try to expand what we are doing and offering. Writing for this website is one of the things you can do to help.

Telling Jane’s story in new venues

Help on that score will free me up to undertake a new task. I have begun scheduling speaking engagements for the coming year. I am not pretending to be a medical expert in these speeches. I am telling Jane’s story and relating my personal experiences as a caregiver. It is a form of outreach I have been uncomfortable doing to this point. It is only in the last few months that I have been able to talk about what happened with Jane in public without breaking down.

Writing for this website is one of the things you can do to help.

But sharing her story is something that needs to be done. And I won’t just be doing it with public speaking. In December, I began composing The Widower’s Tale, the story of what Jane and I went through with her disease–and what I have gone through since her death. Eventually, my plan is to publish that story as a book. The proceeds from that will go to NET cancer research and to support an online grief group that has helped–and continues to help–me get through the grief process–and needs the money to keep doing their good work.

Giving people what they need

Last year, this website had nearly 17,000 visits. The goal for next year is to increase that number by 7,000. Every person who visits this site arrives looking for information to help them deal with their NET cancer or the NET cancer of someone they love and care for. Our job is to provide both information and moral and emotional support for them when they need it.

…sharing her story is something that needs to be done.

Last year, we nearly doubled the number of people coming here in our best previous year–and nearly tripled the number of visits made in 2013. There is no magic in that improvement. We are giving people what they need when they need it. But we need to do a better job and I will need your help to do that.

Building success

I am not suggesting anything fancy here. While I would be delighted with an ice bucket challenge event of our own, I know lightning rarely strikes in the same place–or in the same way–twice. We cannot sit back and wait for a lucky break–though we do need to be prepared to take advantage of it if it occurs.

We are giving people what they need…

My experience tells me that hard work is the road to longterm success in any endeavor. There is nothing glamorous about it. It amounts to getting up every morning and doing the work that needs to be done. I hope some of you will come help me do some of the lifting and toting that needs to be done this year.

Editor’s note: This is Part 1 of a series on our goals and plans to reach those goals in 2015. Part 2 will talk about financial goals.

One of our goals is to help people navigate the obstacle course that is NET cancer by providing them with timely support, not only through factual information about the disease but about how others are dealing with their own experiences.
One of our goals is to help people navigate the obstacle course that is NET cancer by providing them with timely support, not only through factual information about the disease but also about how others are dealing with their own experiences.

 

 

Correction on Stuart Scott’s death story

Death, NET Cancer Awareness Day/Month

Update on the Stuart Scott story

For those of you who don’t know, Stuart Scott of ESPN died this weekend of cancer. Some reports early in the day said he may have died of exactly the same form of NET cancer that Jane had. An article on Sportsgrid, which posted the earliest report of this, now says  they, “have been contacted by the PMP Research Foundation, which noted that Stuart likely had appendiceal adenocarcinoma, another type of tumor that is more often treated with the kind of systemic chemotherapy Stuart underwent. This tumor often leads to pseudomyxoma peritonei, which is uniformly fatal without treatment.”

I blew it–and I am truly sorry.

If this is correct, then Scott’s cancer was even more rare than carcinoid/NETs. Most mainstream media continue only to say he had an unspecified intestinal cancer that was not colon cancer. Given their errors in the past, that may be a safer course.

An apology

I apologize for moving too quickly on that initial report. Unfortunately, I have seen the mainstream media foul up stories about high-profile NET cancer patients too many times. I too often wonder what might have been different had the true story of Walter Payton, Dave Thomas or Audrey Hepburn been told made it into the newspapers in the years before Jane’s diagnosis.

…Scott’s cancer was even more rare than carcinoid/NETs.

And much as I wish I could say the media did a better job on Steve Jobs. They didn’t. And many carcinoid/NETs patients are now suffering the consequences.

Carcinoid/NETs is fatal

None of this changes the reality for patients. Mainstream doctors and oncologists continue to tell carcinoid/NETs patients it is all in their heads. When they finally get it right–and many times they never do–they operate to remove the tumors they have found. They then declare the patient cancer free and ignore all signs to the contrary.

I apologize for moving too quickly on that initial report.

For the record: there is no cure for carcinoid/NETs unless it is caught when there is only one tumor. That only happens by accident because patients with just one tumor are rarely noticeably symptomatic. The disease is eventually fatal unless something else kills you first. People do die in fires and auto accidents. Your death from those things does not mean you didn’t have a fatal cancer–just that something else killed you first.

Complicating the quality of life issue

The quality of life for many carcinoid/NETs patients is bad enough physically. It can involve frequent abdominal pain, constant diarrhea, insomnia, painful gas and bloating, as well as flushing, and fainting caused by low blood pressure. To be called crazy or be told you are making things up by your doctor–and I’ve heard both things related by patients–is worse than unhelpful: it is often fatal.

…there is no cure for carcinoid/NETs…

Jane died of carcinoid/NETs. She died, in part, because one of her doctors told her that her disease was all in her head. She did not trust another doctor for years. She died, as one of her doctors told me, because she defeated her disease the only way anyone ever has beaten this disease: by dying and taking it with her.

NET cancer patients are not crazy

That is reality for NET cancer patients. They have a horrible form of cancer for which we have no cure and for which even our best palliative treatments are too often ineffective. At the end, it often strips away every last shred of dignity. They are not crazy. They are physically ill with a disease that is difficult to detect and that will kill them.

…quality of life for many carcinoid/NETs patients is bad enough…

I keep hoping the media will eventually call a high-profile death from this disease the death from NET cancer that it is. That is probably too much to hope for, however, in a world where most doctors can’t get it right in the first place. Lay people cannot  be expected to get things right when doctors routinely don’t.

Into the future

I feel badly about getting the Stuart Scott story wrong this morning. In hindsight, I should have let things play out a bit further before I jumped into the fray. But it looked like I had everything right at the time and I just couldn’t let what happened with Steve Jobs happen again. I blew it–and I am truly sorry.

They are not crazy.

But let’s make this the year we finally put this disease in the minds of every doctor and every American. Educate yourself about the disease. Educate others about the disease. Only that can change the current deadly realities.
(Editor’s note: This is a revised version of an earlier story, updated with new information. The most common form of NETs often starts in the appendix. I will continue to update this story with regards to Scott as more information becomes available.) 
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. 
–Westport High School yearbook

Goals for WWJ for 2015–Prologue

Marketing NETs, NET Cancer Awareness Day/Month, Uncategorized

An early start

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

‘God helps those who first help themselves.’

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

The original goals

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

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

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

The power of ignorance

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

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

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

A chess lesson

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

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

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

Waking up on Christmas morning

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

I thought I was ready for that.

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

Goals ahead

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

 I was ready to reclaim that part of my life…

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

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

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

Starting points for grief work

Death, Grief, Holidays

Editor’s Note: I posted this a couple of places last week. I am seeing a number of people having real trouble tonight on New Year’s Eve. I won’t take the time to dress this up or paste in a lot of links. The one most people will need is for the online grief group I am part of. 

Jane died 15 days before Christmas in 2010. We buried her a week before Christmas. That first Christmas was nightmarish. I spent it with my father outside Seattle. He’d lost my mother to Alzheimer’s 10 months before. It was our first Christmas for both of us without our other halves.

My father had a stroke in August. He was brain-dead before my plane took off and body dead before it landed.

This year was my fifth Christmas without Jane–and the first I spent in the house Jane and I built together. I went out to be with friends Christmas Eve and went to a Methodist church service. I knew those things were purely to get me out of the house for a few hours that night. Neither Jane nor I were particularly religious in any traditional sense.

The next day, I had my in-laws in for Christmas dinner. I surprised them with a couple of presents. They left about 3 p.m. Jane’s father was released from a rehab facility the day before. He has prostate cancer that has metastasized to his bones. He tires easily.

I watched “It’s a Wonderful Life” Christmas night and sat for a time in the glow of the Christmas tree. Jane made me promise I would always have a tree–even that first year. Gradually, I have dressed the house for Christmas more and more since then. It is hard to do, sometimes, but I do it anyway.

For many of you here, your losses are fresh. You are trying to adapt yourself to the most horrible losses imaginable–and there is no easy way to get there. Holidays can be the worst because they have so many memories and triggers built into them. But sometimes the “ordinary” days can be just as difficult.

I am not a grief counselor but I have been at this for a very long time. I’ve listened to a lot of folks who understand this state far better than I do. They have been certified as grief counselors as well as going through their own grief. And I remember well what they told me in the early days after Jane’s death.

First, it is OK to cry and feel miserable–and to feel that way for a very long time. People talk about the “Year of Firsts” as though once you’ve been through each of the events in a 12 month cycle you are magically OK–that you are back to who you were. For some folks, this is the case. But for most–especially if you had a good relationship with your loved one–it doesn’t work that way.

You are never going to be who you were before they got sick. You’ve lost a major part of the life you had and of the person you were together. “The deeper the love, the deeper the grief,” is the reality. When someone says to you that you should be over your grief by such-and-such a time, they are generally people who have not lost someone important to them in the way your spouse was important to you. They’ve read an article or a book or taken a course and think they understand. Most of the time, they really have no idea.

But while you are never going to be the same, that does not mean you will never be happy again. Right after Jane died I didn’t think I would ever smile again, let alone laugh. But the smiles did come back–as did the laughter. I am never as happy as I was when she was alive–but the grinding sorrow and depression have lifted to a great enough extent that I feel alive again. The holidays–Christmas, Halloween, her birthday and our anniversary in particular–remain especially difficult, but I no longer feel I am drowning most of the time.

You do get better at coping as the months and years pass.

You can speed that up in several ways. Not fighting with your feelings and trying to control them is the first step in that. Grief often comes in waves and all any of can really do is ride them out. Fighting your grief is like fighting the undertow: fighting it will just make things worse. Let yourself have that good cry when you need to. You will feel better afterward.

Crying, of course, is more dehydrating than people realize. It is important that you drink plenty of water–especially in the first months when the tears are falling like a torrential downpour. Avoid alcohol, however. It is a depressant and will only make you feel worse. I didn’t have so much as a beer in the first 14 months after Jane died. Even now, I drink alcohol sparingly.

Crying also burns huge amounts of energy. That means eating properly is important. Unfortunately most of us bury ourselves in comfort foods when we are stressed or–worse–eat nothing at all. You want to establish good eating habits as quickly as possible. Have a good breakfast, a good lunch, and a good dinner every day. Begin cooking for yourself as soon as possible–even if you are cooking only for yourself and hate every minute of it. It will give you better portion control and make you feel like you have regained control over at least one aspect of your life.

Gaining control over your life is an important thing. Grief makes us feel like everything is out of control. Start small in regaining control. When you get up in the morning, make the bed, pick up the bedroom, take a shower, shave and have breakfast. Little acts of control like this are the beginning of regaining control over your life. The sooner you begin to establish regular habits, the better it will be for your state of mind.

One of the toughest patterns to re-establish is regular sleep habits. I’m still wrestling with that four years out. You don’t want to go to bed because if you do, you have dreams. You don’t want to get out of bed, sometimes because of the dreams and sometimes because of the corrosive reality that awaits you. But I set the alarm every night and try to get up at the same time every morning. And I try to go to bed the same time every night. The former is easier than the latter–at least for me.

Get exercise regularly. It doesn’t need to be strenuous. I try to walk for an hour every day. In bad weather, I drive to a local mall and walk there. In good weather, I go out my front door and walk through the neighborhood. Exercise releases endorphins into your bloodstream that make you feel better. Even a half hour walk gets them cooking through your system. Do see your doctor before you undertake any kind of new exercise program.

Join a grief group. Your local newspaper will have listings for groups in your area–as will your local hospice organization. Many hospitals and cancer facilities sponsor groups. Just talking with other people who are going through what you are going through can be very helpful. There are a number of groups available online as well, though there is nothing like being in a physical group where you can receive and give hugs. Online groups, however, are especially good when a huge wave of grief hits you at 2 a.m.

For me, one of the toughest things was the social loss. Jane was not just my wife, she was also my best friend. We did everything together. I try to have at least one social event every week–even if it is just going out for coffee with someone. I do lots of volunteer work, in part, for the same reason. Much of my work is cancer-related, so it really does double-duty. I am avenging Jane’s death and getting some human contact at the same time. I didn’t think about the social aspect of that work when I started doing it, but the social aspect does help me get through the rough patches.

One of the problems we all face is that the grief really gets worse just about the time everyone around us has gone back to their daily routines. Their lives get back to normal just about the time the shock wears off for us and we enter the real heart of our loss. Finding something to do to help others can provide us with social outlets beyond our traditional circle of friends.

Another thing I find helpful is writing. Sometimes I write for no greater purpose than to move my grief from inside me onto the page. Keeping a journal can be a good way of doing that. You can write things there you don’t want others to hear or see. You can rage against the gods, the doctors, the insensitive person who asks three months in if you are going out with anyone yet….

That’s another thing you are going to encounter. Sometimes people can be so insensitive you can’t stand it. Most of the time that insensitivity comes from their ignorance. Most people see TV and film as reality. There, grief is over in an hour or two. It just doesn’t work that way for most of us.

There are others who try to compare this loss to a divorce. One of my brothers did that to me barely a month after Jane died. He’d had a divorce many years before. He did not see why I was not already out there dating. He didn’t understand that while he and his wife stopped loving each other, Jane and I hadn’t. That alone makes the situation different. But people don’t see that.

In fact, rushing into another relationship is frequently a bad thing. You are wounded and vulnerable and incapable of making a rational decision about financial matters, let alone emotional ones. I swore off making major financial decisions for a year after Jane died–a vow that has lasted until at least now as I write this, with the exceptions of getting my will written and committing as much as I can toward NET cancer research.

I’ll also admit to having had a number of crushes in the last two years. I have acted on none of these because I still feel emotionally too fragile to do so. After four years and 19 days, I’m still wearing the wedding ring Jane put on my finger 25 years, three months and 27 days ago.

I hope those of you who are relatively new to grief will find what I’ve written above useful. Grief is not a sprint. It is a marathon–or maybe an ultra-marathon. But there is no finish line and there are no prizes for those who finish first. And unlike a competitive race, we can help each other get through it.

Christmas Letter from Walking with Jane

Boston Marathon Jimmy Fund Walk, Grief, Marketing NETs, NET Cancer Awareness Day/Month, NETwalkers Alliance

A too familiar stair

Dante finds himself contemplating life and loss at the beginning of the Divine Comedy. A bit more than two weeks ago, I found myself in a similar space. I had started my own epic, a book on grief that will eventually, if I can bring myself to finish it, help to fund both a cure for the carcinoid/NETs that took my wife from me and an online grief group that has helped me try to survive that loss. I have the first five chapters drafted–but each has exacted a steep emotional price as I journey again through the last months of Jane’s life and the early days following it.

…have a wonderful holiday…

Those emotions have been further exacerbated and complicated by the events of this past year. In August, I lost my father to a massive stroke. He was dead before my plane reached Seattle. Like me, he was a widower. My mother died of Alzheimer’s barely 10 months before Jane’s fight with NET cancer led to her death. My father and I spent that first Christmas–and all the Christmases since–together. We talked about my mother and Jane and about what we both were feeling. It was a peculiar thing to hear my father talk about how he felt. He was not one easily given to sharing his feelings.

A year of death and disease

This Christmas, I will not travel out west for the holidays. My father-in-law was diagnosed just six weeks ago with prostate cancer that has already metastasized to his bones. He will return home on Christmas Eve from a month in rehab and treatment. I cannot leave him and his surviving daughter to face this Christmas–perhaps his last–alone. My brothers and sisters will have each other this Christmas. My in-laws need me here more than I need to be in the west.

He was dead before my plane reached Seattle.

But I will miss those hours with my father. There would be much for us to mull over. Just days before his death, one of my nieces died from a disease she had fought since her teens. I can find no reason in it. Early in the year, I lost one of my oldest friends to breast cancer. Another lost her mother to Parkinson’s. Three friends lost their father to colon cancer. Another friend’s wife was diagnosed with breast cancer and is in treatment. My cousin spent much of the first half of the year fighting uterine cancer. In fact, not a month has gone by this year without either a cancer diagnosis or a death.

Intimations of mortality

Thirteen days ago was the fourth anniversary of Jane’s death. The lead-in to that date was more difficult than I expected. There were days it felt as though she had just died. Part of that was working on the book. But a major part of it was how empty everything seems without her. I can go to a play, listen to music, watch a film, bake bread–do nearly anything–but there is no Jane to share in the small victories or pleasures of life. It is all dust and ashes in my soul. I am tired.

I will miss those hours with my father.

I am reminded of mortality at every turn. Even my own body reminds me of that, though not so horribly. I have had gum surgery on every quadrant of my mouth this year and face more surgery there in the year ahead. Just weeks before the Boston Marathon Jimmy Fund Walk my right knee, which has often given me twinges, gave me pain serious enough that I cut my distance to 13.1 miles instead of the usual 26.2. I’ve only begun walking on it seriously within the last two weeks and, while it still gives me a twinge once in a while, it is healing nicely. Unfortunately, the months of enforced inactivity have put 12 pounds on that I had hoped I’d said good-bye to permanently.

While much is taken, much remains

But I would not have anyone believe that everything has gone darkly this year. Walking with Jane has begun to gather the momentum necessary for flight at long last. Since April, this website has been viewed over 1000 times a month every month except one–and it came close. And every one of those months has been the best of its kind ever in terms of traffic. In November, we had our first 3000 view month.

I am reminded of mortality at every turn.

In April, our Marathon Walk team combined with Kulke’s Krew to form one large team. When the dust settled in September, Caring for Carcinoid/Walking with Jane, Hank and Anne had 48 walkers, eight of whom achieved Pacesetter status. Total, we raised nearly $70,000 for NET cancer research at the Dana-Farber Cancer Institute. That total put us in the top 20 teams–and eclipsed the total of our separate teams the year before by about $10,000. I personally raised nearly $17,000–a personal best for me, as well, that should put me in the top 20 for individuals.

Raising the bar

Our goals for that event for next year are even bigger–and walk organizers at the Jimmy Fund are doing all they can to help us. They have granted us permission to use the Jimmy Fund Walk logos on a stand-alone Facebook Page–the first of its kind to be allowed to do so–for our renamed NETwalkers Alliance team, and are arranging for us to meet with some of the more successful longterm teams to learn from them what they have done to build and maintain success. We will be the official team of the Program in Neuroendocrine and Carcinoid Tumors at DFCI. Both Drs. Matt Kulke and Jennifer Chan, as well as members of the research and support teams for the program walked with us this year.

That total put us in the top 20 teams…

I was reappointed to the Visiting Committee for Gastrointestinal Cancers at DFCI this year. We heard from former NBC News anchor Tom Brokaw at this year’s dinner. Brokaw was treated for multiple myeloma last year and, while he looks frail still from the treatment, still has that signature voice, as well as the ability to see the larger patterns in world events. He spoke eloquently for about 20 minutes without a script or even notes, weaving his cancer journey into world events and new and old scientific discoveries.

Promising discoveries

We also got a look at the meeting at some truly promising developments both on the general cancer and NET cancer fronts. Two items stood out in particular. The first is the discovery of some markers that may eventually make detecting pancreatic cancer earlier possible. The second was progress in the use of immunotherapy on cancer.

Our goals for that event for next year are even bigger…

The second is of particular importance to NET cancer patients as at least one Phase III trial of immunotherapy is scheduled to start in 2015 for carcinoid/NETs. That trial is funded by the Caring for Carcinoid Foundation, which has launched a million dollar matching program for that effort. If you want to make a contribution to that effort, you can do that here.

Moving the needle

Our Greater Fall River Relay for Life effort continued to grow this year, as well. Our team broke the $9000 barrier for the first time this year. While I have had to step away from the planning committee for the full event because of the increasing demands of our work on NET cancer, we remain committed to helping find cures for all forms of cancer–and for supporting cancer patients as they struggle with the disease.

The second is of particular importance to NET cancer patients…

Our fifth Walking with Jane Scholar was named at Westport High School in June. That scholarship gives a student interested in pursuing a career in either medicine or science education selected by the science department at WHS $1000 every year for four years while they work on their undergraduate degree. We also gave our second and third scholarships at Bridgewater State University, Jane’s alma mater. Those are one year $1000 grants for students selected by the university.

Original vision and current reality

This fall, we received final recognition from the IRS as a 501 (c)(3) charitable organization. That recognition is retroactive to our incorporation in May of 2012. I cannot tell you how pleased I am to have that piece out of the way.

Our fifth Walking with Jane Scholar was named…

But I had a very different vision of how all this was going to work in the spring of 2011. I thought then we would be raising a lot more money directly than we are. Instead, we are inspiring other people with far greater resources to step up and make donations to groups working on this fight other than us. Since Jane’s diagnosis there has been a steady increase in funding for NET cancer. Today, three times as much money is raised and spent on NET cancer as was in 2010. People tell me that we are, in part, responsible for that. I will take them at their word for that.

Moving forward

My vision has become increasingly decentralized and more regional. This fall, I wrote extensively on a marketing strategy for NET cancer so that we can raise not only more money for research but also to raise public awareness about the disease. I hope the model I proposed at the end can be used to increase both those things.

…we are inspiring other people with far greater resources…

Whether it will or not, remains to be seen. But the NET cancer community can rest assured that we will not stop trying to move things forward against this monster while life endures. I remain as determined as ever to be able to stand at my wife’s grave to tell her her disease is dead ands will not kill another human being again.

Final words

But I am also very aware that this is not a fight any of us can win on our own. We’ve had a lot of help the last four years from people all over the country–and I hope we have been equally helpful to them. Thank you to all of you who work in this vineyard. May the year ahead bring us the cure we all seek.

…to be able to stand at my wife’s grave…

And I am also very aware that I need to take periodic breaks if I am going to continue doing what I am doing. While I know I had promised a series on immunotherapy this month, it is increasingly clear that is unlikely to happen before January. I will likely write one more piece before New Year’s, but for the next few days I am going to try to get some rest and spend some time thinking about things other than cancer.

And I heard him exclaim…

I hope all of you have a wonderful holiday, whichever of them you celebrate, and that your new year is filled with new hope, improved health and reduced christmas stress.

Thank you to all of you…

Happy Christmas to all, and to all a good night.

Pax et lux,

Harry Proudfoot

Patients, caregivers, researchers, widows and widowers and children all walked with our team this year.
Patients, caregivers, researchers, widows and widowers and children all walked with our team this year. Merry Christmas to all of you who worked this year to end this scourge.

 

Four years without Jane

Death, Grief, Jane

Four years of avoiding

I picked up my sister-in-law this morning just before 8 a.m. We drove to a local mall where we walked for about 90 minutes. We talked about a number of different things as we paced along–her father’s health, the weather, the economic climate locally–but there were two things we didn’t raise at all, though I am sure we both thought about them. She is going in tomorrow for a biopsy of a suspicious lump. I am going along to keep her company. That came up–but only briefly–when I dropped her off.

It was raining this morning. It was raw and miserable. She commented on that and I said the weather suited my mood. That was as close as we came to what happened four years ago today. But it was the first thing in my mind when I got up this morning.

Four years of traditions

I drove home, showered and shaved. I had soaked some raisins in cherry brandy overnight in preparation for putting together a pair of fruitcakes today. Jane and I made some every year from my old family recipe. I’d pried it loose from my parents a couple of years after I graduated from college. I may have the only copy of it that still exists. The world has stopped caring about fruitcake. And given how bad the store-bought ones were, I’m not surprised.

Making a homemade fruitcake is not for the faint of heart, however. The ingredients can be–some of them–hard to find. And most of them are not cheap. Worse, the ingredients have to be prepared in five different bowls before being combined–and the final mixing requires a strong arm. There is comparatively little flour in a good fruitcake–just enough to bind the fruits and nuts together.

Four years at a grave

The baking takes about two hours in a slow oven. While the heat transformed the sticky batter into something edible, I made my pilgrimage to the cemetery. I took a Christmas basket with me made up of fake Poinsettias and real pine cones and pine branches. It joined the wreath I had placed there after Thanksgiving. There was a soft rain falling and a light breeze. Other than me, the cemetery was empty. Not even the birds were interested in being out there today.

I didn’t care. I wasn’t there to talk with the living or listen to the birds. Four years after Jane’s death, I still hurt–I’m still angry–I’m still frustrated. Of all the cancers she could have had, why did it have to be this one–the one without a cure? The one with endless diarrhea? The one with endless gas and bloating? The one that destroys your heart? Part of me knows the answer to those questions, but the answer brings no real comfort.

Four years of growth

There is some lichen beginning to take root on the stone that marks the grave she and her mother share–that eventually her father and sister and I will share. Part of me thinks I should clean it off come spring. Part of me thinks it gives the granite more character. It is most visible on cold, wet days–like today. It is a pale green against the dark gray.

I left three kisses and four touches on that stone as I left–as I do on the tenth of every month, on every Saturday–and on every other one of the important days on our calendar. Right after she died, I tried to go there every day that I could. I took flowers and small stones and other decorations with me. Those visits tore my soul to pieces.

Four years of painful days

Sometimes the visits I make there still do. Her birthday this year–she would have been 60–and our anniversary–our 25th was September 2–were especially difficult. Today was easy by comparison, but still brutal.

I came home, took the fruitcakes out of the oven, then made bread. Jane taught me about single-rise yeast early in our marriage. It takes what was once a day-long chore and cuts it back to a couple of hours. I’ve been experimenting with a new bread recipe of my own devising. It makes a very fine-textured wheat bread that I like for toast and for sandwiches. I played with the recipe today, scalding the milk and putting just a touch more butter and honey in the mix. It seems to slice a bit better in its freshest state this way. But the weather could be playing a role as well.

Four years of creative tension

Jane is dead. She died four years ago today. Part of me died that day, as well. Sometimes I feel all my movement is just the dying inertia of our life together–that my body is still moving because it does not know it is dead yet. Other times, I know that is not true–that I move forward every day because I still have work to do in this world–that I still have things to discover and invent and experience.

There is this constant tension between those two things. There is constant tension between observing tradition and creating the new. There is constant tension between living and dying. There is fruitcake–and there is bread–and both have a place in this life I am living.

Fruitcake and bread are apt metaphors for my experience today, the fourth anniversary of Jane's death.
Fruitcake and bread are apt metaphors for my experience today, the fourth anniversary of Jane’s death.

Help us kill Jane’s cancer for everyone

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

Jane’s last waking hours

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

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

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

Everything looked promising

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

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

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

Jane’s last carcinoid attack

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

…I was more optimistic every day…

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

What we learned from Jane’s case

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

Thirty-eight hours later, she would be dead.

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

The search for answers

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

…we still have nothing that looks like a cure.

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

You can help

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

I’ll walk again on September 20, 2015…

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

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

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

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