…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.
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.
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, 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.
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.
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 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.
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.
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 moment of Jane’s death six years ago stands barely an hour from now as I write this. I’ve had a miserable day, as I should have expected. I had hoped to make cookies this afternoon and do the prep work for decorating the tree tomorrow. But the afternoon dissolved into mindlessness. I should have seen this coming.
…how we can make a greater difference…
I went to a play last night–a romantic comedy I hoped would lighten my soul. It was funny if the laughter from the rest of the audience was any indication. I fought back tears, throughout. It was a play about growing old together–from wedding day to the end when only one partner remains.
Roads to recovery
Six years is a long time to mourn in the eyes of the modern world. We move so quickly from relationship to relationship, from problem to problem, from job to job. We seem committed to everything and nothing and no one. Sometimes, I think people thought Walking with Jane would prove a passing fancy–a means to heal the grief and failure I felt after Jane died. In a couple of years, I would heal and move on.
…when only one partner remains.
Yet here I am. Now some people tell me my NET cancer work and Walking with Jane hold me back from healing. That may even be right. But I can’t walk away. I know too much. I know what a cure would mean. And I know it not about faceless strangers, but about people I know and have come to care about. I know what they face in their day-to-day lives because I saw Jane’s life fighting the same disease. I know how their stories end if nothing changes.
Enter Scrooge
Each year, I go to a local theater company’s re-imagining of A Christmas Carol. Each year, I watch the George C. Scott film of the same story. I am haunted at this season of the year not only by Jane’s ghost, but by all my other ghosts as well. I know my failures intimately. And I am haunted by Scrooge’s ghosts as well. They tell me not only his story, but my own.
I know what a cure would mean.
They remind me not only of my failures, but of my successes as well. Sometimes, I focus too much on what I have failed to do–the lives I’ve failed to save. Sometimes, I focus too much on the things that have happened to me that have brought sorrow rather than joy. I understand pieces of why Scrooge became the man he became because they so resemble moments in my own.
Actions matter
Ultimately, though, I am reminded that all our actions matter. We have it in each us to save or condemn Tiny Tim–and all his brothers and sisters–or at least make the attempt. Sometimes, we will succeed and Tim will throw away his crutch and grow to adulthood. But sometimes, no matter what we do, there will be an unused crutch by the fireplace–an empty place at the table.
… I am haunted by Scrooge’s ghosts…
That we may fail is not a reason to stop trying. That the problems seem too big does not let us ignore them and walk away. We can only do the best we can with the tools we have and hope what we do will prove enough. We can’t do nothing and expect things will change on their own. If we want to save a life–any life–it is on us to do what we have to do to make that happen.
Thinking about futures
For several months, I’ve debated what to do with Walking with Jane in general–and what to do with this website, specifically. I’ve written elsewhere about how others seem to fill the niches I envisioned this site and this organization filling better than I ever have. I’ve written elsewhere about the other NET cancer oriented demands on my time. I’m still debating what precisely our purpose is in the emerging NET cancer world–a world very different from the one that existed the day Jane died.
That we may fail is not an excuse to stop trying.
I do know this website will remain in one form or another–and that Walking with Jane as an organization will not go away anytime soon. But both need more thought about their future than their past. I expect the coming months will see some changes in both in terms of content, here–and goals for the parent organization. We need, 5+ years in, to re-examine who we are and where we are going–and how we can make a greater difference in the world.
Each day is a journey down an unknown path. Sometimes we can work out where it is headed. Other times, we can’t. Today’s path was predictable. It was the sixth anniversary of Jane’s death.
This post finishes the 30 Day Walking with Jane NET Cancer Awareness Month Challenge. I hope you’ve found things in it of use. I’ve tried to deal with subjects that matter to both patients and caregivers. I’ve tried to create hope in what is too often a bleak landscape. But I’ve tried to be realistic, as well.
It was easier when I was numb…
The truth remains, nearly six years after Jane’s death, that we still have no cure for NET cancer. We’ve made progress at improving patients’ quality of life. We’ve given them longer and better lives. We’ve begun to understand some of the underlying mysteries that make the disease so difficult to diagnose and so difficult to treat. And we have some newer and better ideas about how to proceed.
Knowledge challenge
We need more researchers and more research. That means we need more resources–a lot more. But things have improved on that front. We have nearly eight times as much money to work with as we had six years ago. That still doesn’t amount to a rounding error on what we spend on other cancers. But it is a bigger rounding error.
…I’ve tried to be realistic…
Six years ago, Jane’s 26 days in the hospital doubled our knowledge of the disease. And what we spent on her care over the last three months of her life nearly equalled the total we spent on research in the US–from all sources–that year. The post surgery treatment plan we talked about then included things no NET cancer patient had ever tried. Today, liver embolization is often something NET patients are offered–as are many of the other things we talked about as possibilities.
Diagnosis and treatment challenge
Patients in the US had octreotide–and little else, six years ago. Afinitor (Everolimus) had just been approved, but only for patients with pancreatic NET. Patients who could find the money could fly to Europe for PRRT. Patients who couldn’t went without–and sometimes died as a result. Today, there is Lanreotide, as well as Afinitor. The results of the PRRT trial sit on a desk at the FDA awaiting approval, as do the results of the Telotristat trial.
We need more researchers and more research.
Six years ago, NET cancer was all but invisible on every scanning device we had. Then researchers developed the Octreoscan, which lit the tumors up like a Christmas tree. Now, we have begun to see implementation of the even better Gallium-68 scan that shows the tumors in much higher definition. But we still lack a simple, affordable, and widely available blood test as a diagnostic tool. Doctor don’t like ordering expensive tests for a disease too many have still never heard of.
Awareness challenge
Awareness, however, remains a problem. Medical schools do a better job of raising NET cancer as a possibility than they did ten years ago. But we do too little in-service trying and consciousness raising with general practitioners. And too many doctors who have heard of it brush off testing for it because they believe it is too rare to consider.
Patients who couldn’t went without…
Awareness among the general public is even worse. If I say I am doing the MS or Cystic Fibrosis Walks, most people know what I am talking about. I’m still waiting for the moment a stranger tells me they’ve heard of NET cancer when I tell them what I do. Yet the number of cases of CF and MS diagnosed each yer combined is less than the number of cases of NET cancer diagnosed.
The challenge of patient knowledge and support
Patients have far more access to information than they did six years ago. We have more patient conferences. We have more support groups–including groups that exist online and on Facebook. And we have books and articles written specifically for patients. People used to say that anyone who’d been a NET cancer patient or caregiver for three months had the equivalent of a Ph.d in the subject.
Awareness, however, remains a problem.
I suspect that level of knowledge takes a bit longer to get than it once did. We know more now than we did then. But this often means patients still know more than their primary care doctors do about NET. Sometimes, especially if they are not seeing a NET cancer specialist, they know more than the oncologist they initially see who ends up running their treatment. Too many patients and caregivers still have to be strong advocates for themselves if they want to get the best treatment.
Caregiver challenge
And then, there’s the challenge we too often forget about or brush over. Caregivers are in a tough spot, regardless of the illness their other half faces. Their difficulties multiply when they face a disease as debilitating as NET cancer. At times, I felt trapped and overmatched by the enormity of Jane’s last days. Some days, I still do. Over the last several days of this challenge, I’ve written a series of posts on how to be a better caregiver.
Patients have far more access to information…
This morning, I got a note from another caregiver: “How does the caregiver overcome self-recrimination?” he began. (You can read the rest of his note here, at the end of yesterday’s post.) I intend to write a post on dealing with the aftermath of losing a loved one you’ve been the caregiver for later in December. But his plaintive response underlines what a poor job we do of helping lay caregivers deal with what they encounter. We desperately need more dedicated resources for people in that role, no matter what disease they face. Letting us lurk in patient support groups is not enough.
Personal challenge
For a bit more than six years, I’ve knowingly dealt with NET cancer virtually every day. I’ve done that while trying to deal with all the other aspects of my wife’s death. It was easier when I was numb most of the time–which was the case for much of the first five years after her death. Sometime in late 2015 or early 2016, I started to hurt. It’s been awful. I have days when getting out of bed is a struggle. I make plans and lists but have entire days that vanish in aimless wandering. So I’m taking a break–intentionally this time. I can’t say how long, because I don’t know. A good chunk of December, I suspect, at a minimum.
Caregivers are in a tough spot…
I’m going to sit and cry for a while. And I’m going to think about the other promises I made Jane beyond killing NET cancer and putting up the tree. Those, I’ve worked at keeping. But I also promised her I wouldn’t stop living; that I’d let love come into my life again–and give that opportunities to happen. I promised her I wouldn’t spend the rest of my life as a hermit in a cave. I haven’t done very well at any of that. It’s time I did better at honoring those promises.
Each promise I made to Jane is a challenge that makes my life, life. I finished putting together my outdoor decorations this afternoon–a promise I made Jane about how i would continue to honor the holidays we both loved.
