Raising awareness–or money–requires an effort from everyone affected by carcinoid/NETs. We all have to take the lead in our local areas. An awareness walk in Boston seems a good next step.
A simple idea
Gordy Klatt had a simple idea in 1985. He was a doctor who’d seen one too many cancer deaths to sit on the sidelines. So he went to a track in Tacoma, Washington and started to run. He ran and walked for 24 hours. Friends and family supported him from the sidelines as he garnered pledges to the tune of $27,000.
…it is a puzzle we need to put together.
Somewhere in that 24 hours, the germ of the idea for Relay for Life was born: teams walking a track and raising money and awareness for the cancer cause. The American Cancer Society built a fundraising powerhouse from that idea–and arguably spawned hundreds, if not thousands, of team-based fundraising walks.
For most of those walks, we walk as Walking with Jane. But we do the Jimmy Fund Walk as the NETwalkers Alliance. That team is part of the second most successful Jimmy Fund Walk Group, #cureNETcancernow. Our bike team this year called itself the NETriders Alliance. Whether that name stays remains to be seen.
The walk we don’t have
What we don’t have is a NET cancer specific walk. Such walks–and even runs–do exist, but they are hardly as ubiquitous as walks for MS or Cystic Fibrosis, let alone Relay for Life. The closest such walk I know of is in New York. That’s a bit longer drive than I want to undertake for a 5k walk.
My friends and I participate in many walks…
The idea for a NET cancer awareness walk in Boston has kicked around the inside of my brain for a couple of years. Wednesday morning, if all goes as planned, I’ll pitch that idea to some of the people who run the Jimmy Fund Walk. I’ll seek their guidance and support for the project.
We need help
I know one of the first things they’ll ask is how many local volunteers we can get for the project. We’ll need people to help plan the route, figure out where to put support stations, and deal with local government to get permits and police. We’ll need day-of volunteers as well as people to work on the steering committee.
I know some day this spring or summer, I’m going for a walk in Boston to raise NET cancer awareness. I don’t want to plan that walk alone. And I don’t want to walk it alone. If you are in the Boston area, we need your help. Consider your markers called in.
Raising the stakes
This represents just one of many steps in putting NET cancer in the national consciousness. We need the average person to know NET cancer exists at the same level they know that brain cancer or ovarian cancer or cervical cancer exists. We need people to know it exists the same way they know MS or ALS exists.
There are many pieces to that puzzle–and this is just one of those pieces. But it is a puzzle we need to put together. Recent advances show this cancer affects many more people than we imagined just seven years ago. Without broader awareness in the general population we will never have the resources to help change the lives even of current patients.
I hate the reason this memorial garden exists. But it gives me a place to sit and remember my wife and who she was.
Days that hurt
I hate the tenth day of the month–any month. But I especially hate November 10 and December 10. I hate the fact November 10 is Worldwide NET Cancer Awareness Day. I don’t want to, but it falls on the tenth of the month and that day has a double sacredness to me in November.
…I love the possibility NET Cancer Day helps create.
Today is the monthly anniversary of Jane’ death. It also marks the seventh anniversary of the last even remotely normal day of my life. Worse, this year, it stands one month away from the seven-year anniversary of Jane’s death for a man whose life runs in sevens, not decades.
The last sane day
Seven years ago today, Jane and I went to bed early. The next morning, we faced the difficult rush-hour drive into Boston to Dana-Farber. We’d see Jen Chan, Jane’s oncologist, get another round of blood tests, wait for the monthly Sandostatin shot to thaw out, get that injection done, see a dietician. It was supposed to be a routine day. It wasn’t.
…that day has a double sacredness to me…
There was trouble with the blood draw because they couldn’t find a vein that would work. Jen was concerned about the build-up of fluids in the abdomen. The meeting with the dietician went well, but then we discovered Jane was leaking a clear fluid from the injection site. When we got home, for the first time, I had to carry Jane up the stairs. That had never happened before.
The beginning of the end
The next morning, Jane’s heart surgeon called. He wanted to move the surgery to replace the valves in the right side of her heart to Monday. They’d been damaged by the cancer. We’d planned to do that surgery after the holidays. Now…
It was supposed to be a routine day.
Saturday, we had that long conversation everyone needs to have. We did it once a year in January. This was an extra one–a more difficult one–the real one no one really wants to have. But we both stayed optimistic. This was a precaution–not a good-bye.
Sudden decline
Sunday, I had to help her off the toilet. That had never happened before. We arrived at Brigham and Women’s Hospital that afternoon. She didn’t have it in her to walk to admitting. I pushed her wheelchair to the desk on her floor and to her room. I can’t describe how that felt–how it feels, even now. She had always refused a wheelchair before.
But we both stayed optimistic.
Monday, they took her into surgery about noon. Part of me wishes she’d died on the table. She could have. The heart was more damaged than they expected. The brilliance of her surgeon saved her. But six hours of surgery became 11. I got to see her after midnight–unconscious and with tubes and wires flowing everywhere.
Aftermath
I loved her and I fought for her. And then I let her die. I planned the funeral she refused to believe she’d need. I buried her and settled her affairs. I stayed strong for her family and our students. Two months later, I started to cry. I haven’t really stopped since.
Sunday, I had to help her off the toilet.
But everyone else had moved on. They thought I had, too. No one saw the tears. No one saw me walk into the grocery store and start shaking. No one saw me walk out the door. I worked as I always had–though not as efficiently. I wandered the house aimlessly. I didn’t sleep. But slowly, I learned to cope, if not to heal.
Seven years in solitary
I understand solitary confinement. Every widow and widower does. You go from constant human contact to almost none in an instant. You join support groups, have coffee and meals with friends and children. But at the end of the day, you come home to an empty house filled with silence and memory. For all that you fill your life with other people and other things, a part of you no longer exists.
No one saw the tears.
Something has changed in you and you can never go back. You can only live with it and keep moving forward. So you change grocery stores, go to different restaurants. You paint rooms and redecorate. Sometimes, you move. You find work that has meaning for you. You cope–but sometimes–even years later–you just cry for no better reason than it hurts too much not to.
A day of hate–a day of love
November 10 marks the last sane day of my life. It marks, too, the last day I could–if even for a minute–pretend NET cancer wouldn’t prove the end of our life together. I wish NET Cancer Day fell on any other day of the year–and I’m glad that it doesn’t. In a very real sense, for me, it falls on the perfect day–a day of remembrance that lets me fight back.
…a part of you no longer exists.
I hate that other people face what Jane faced. I hate that we don’t have a cure. And I hate the idea that too many other spouses face the same solitary life I live if nothing changes. But I love the possibility NET Cancer Day helps create. It helps me deal with the second worst day in my year.
Becoming a NET cancer specialist who meets the Carcinoid Cancer Foundation’s criteria is tough. Kim Perez works with NET cancer patients at DFCI. She isn’t listed at CCF, yet. We need more young doctors like her to choose NET.
See a specialist
Veteran NET cancer patients and advocates in support groups constantly tell new NET cancer patients they need to see a NET cancer specialist. We also frequently tell them going to an NCI cancer center with a formal NET cancer program that offers a team approach should be a priority as well. Advanced NET cancer treatments can involve not only an oncologist, but a surgeon, a liver specialist, and a radiologist, as well as other doctors in a variety of specialties.
…there is a very real elephant in the room…
Finding a NET cancer specialist requires one click on the computer. The Carcinoid Cancer Foundation (CCF) maintains a list of recognized specialists on its site. That list also includes non-specialists with a strong interest in NET cancer who work well with specialists, as well as cancer centers that meet their very strong criteria.
We have few specialists
That’s the good news. The bad news: the list of doctors, including the non-specialists in the US, has only about 100 names on it. Fifty-eight of those people meet the criteria CCF sets for specialists. They list only six NCI cancer centers with a NET cancer specialty.
…see a NET cancer specialist.
The criteria for being listed as a specialist are pretty stiff: 10-20+ years treating NET cancer patients; 10 NET cancer papers, authored or co-authored; a minimum of 100 patients treated. Some very good NET cancer doctors may not have the years or the papers or the patients yet to make the list of specialists. Some may even be among the 40+ other US doctors on the list with some NET cancer interest or experience. The list also includes overseas doctors by country.
What the numbers mean
But even if we include everyone on the US list as a specialist, those doctors would have to handle a caseload of more than 1700 patients a year. Cut the number back to the list of CCF recognized specialists and that number jumps to over 2900 patients for each doctor.
That’s the good news.
Simple truth: We don’t have anywhere near enough NET cancer doctors for the number of patients we have. In the best, insane, semi-workable scenario I could come up with–worst case, for doctors–a NET cancer doctor could handle a caseload of about 600. This assumes seeing patients five days a week, and an average of one visit per patient per month. It includes no time for research or detailed review of patient records. Nor does it include time to review research done by others or visits to patients in hospitals. I didn’t give them vacation time either. Even so two-thirds of patients would not get to see a NET specialist regularly–or at all.
Research reality
Reality is significantly different. Recommendations based on actual research argue for a patient load for oncologists of 250-350 patients per doctor per year. Given the nature of NET cancer, I’d argue the 250 is likely more reasonable than 350.
…over 2900 patients for each doctor.
Frankly then, we need at least six times as many NET cancer specialists as we currently have just to service current patient levels. Given the rapid growth of NET cancer cases since 2010, that situation will only likely get worse. I don’t know where to begin to look for the doctors we need to fill the current gap. I have even less idea how we fill the potential gap if doctors are right about the possibility of 250,000 undiagnosed cases currently in the US. I don’t want to think about my own private worst case scenario.
NET cancer centers?
The situation for NET cancer centers may be even worse. If every NET cancer patient went to one of those six listed NCI cancer centers to seek treatment, they’d face a sea of more than 28,000 individual patients. Each center would require 100 or more NET cancer specialists or specialists-in-training, depending on what we decide is a reasonable caseload. And never mind the number of other specialists we’d need to support a team approach.
…we need at least six times as many NET cancer specialists…
The number of specialists required to staff a NET cancer department for one of those six centers would require nearly four times the total number of doctors in the Dana-Farber Cancer Institute’s entire gastrointestinal cancer department. I know there are other NCI centers with NET cancer programs that are not included on the CCF list. But even doubling their list–or tripling it–still makes for an unmanageable situation.
Problems for patients
Nor do I want to think about the travel hardships many patients would–and do–face to get there. Commutes of 800 miles or more are not uncommon among patients seeking cancer centers now. When urgent diarrhea comes in the middle of such a trip… Jane and I only traveled the 60 miles to Boston and back and frequently had this issue.
…a sea of more than 28,000 individual patients.
Patients need less distance to travel. We need to create many more NET cancer programs at NCI cancer centers within convenient driving distance for patients. But we don’t have the specialists to do that any more than we have the numbers to fully staff the number we have.
What do we do with this elephant?
Many of us are rightly focused on doing the basic scientific research and finding and testing treatments. Others, also rightly, concentrate their efforts on educating doctors, patients and caregivers. Still others work diligently to find the money to fund those things, also a real necessity.
Patients need less distance to travel.
But there is a very real elephant in the room we need to consider as well. Knowledgeable NET cancer doctors, nurses and medical centers are in critically short supply. Given the rapid growth in the patient population, it is a problem we must address–and quickly.
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.
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.
I’ve had a mind-shattering kind of weekend. I’ve cursed and shouted and cried, both publicly and privately. I’d like to say I feel much better today, but that would be a lie. I have a tough enough time in November, given all the memories it conjures up. Adding the angst of NET Cancer Awareness Month/Day into the mix only further complicates things.
I sell a piece of my soul for that…
But while moving NET Cancer Awareness to some other part of the calendar would be good for me–and getting it away from the elephant in the room that is October might be good for all of us–it’s not likely to happen. Truth be told, we lose more than 1000 patients to NET cancer every month in the US alone–and diagnose even more. No month or day is a good day when that happens.
Why we need awareness every day
As Ronny Allen argues, “Every Day is NET Cancer Day.” Every day, patients around the world hear some variation on the words, “I’ve never heard of this cancer before.” For new patients and their doctors, the first time they hear “NET cancer” they are launched on a quest for information that raises their awareness–and the awareness of the people around them.
I’ve had a mind-shattering kind of weekend.
But it’s not enough. In fact, I’d argue, that awareness comes too late. The doctors need awareness before they see that first patient. That way they would be more willing to consider the testing that will lead to that diagnosis sooner–or at all. As the people at the Carcinoid Cancer Foundation have said for years, “You can’t detect it if you don’t suspect it.” And you can’t suspect something you’ve never heard of.
Doctors need NET knowledge, too
We have patient conferences where both the newly diagnosed and the long-suffering can find out the latest about treatments and support systems. But we have nothing similar–no real in-service training–for experienced primary care doctors. They can go online, as Jane’s doctor did, and try to make sense of the disease that way. But by the time they have a new NET patient sitting in their office, it is too late.
‘Every Day is NET Cancer Day.’
Maybe what we need is a traveling road show/conference about rare diseases aimed at primary care physicians: Six diseases you’ve never heard of in six hours. NET cancer is not, after all, the only disease out there that makes a doctor go, “Hmmmm.”
Awareness in the general population
We need the general population to know about the disease before the first time they encounter someone who has it. They are where the money for research has to come from–whether through donations or government funding. Currently, virtually the only people donating to research are those who know someone who has NET or who has died from it.
Six diseases you’ve never heard of in six hours.
Getting awareness of NET cancer to happen among the general population is hard. It’s why I’ve never turned our Walking with Jane Facebook Page into a private group. I understand the need for a place patients can let their hair down. I’m part of several such groups. But my purpose is somewhat broader than providing emotional and intellectual support for patients. So Walking with Jane exists as a public forum to educate non-patients and non-caregivers so we can create a broader base of support.
Purpose of public pain
Of course, the vast majority of the people who read what I write on NET cancer are patients, caregivers and people who have lost someone close to them to the disease. I know some of what I write is as painful for them to read as it is for me to write. It is a reality none of us wants to think about. And it will remain a reality until we find a way to drive out the demon that is this disease.
…we can create a broader base of support outside our own ranks.
I hope, in showing my pain, I can ease the paths of many who are patients. Despite my depressive tone, I want everyone to know that I am making progress toward dealing with the most horrible loss a spouse can experience. I want both patients and caregivers to know there is hope, as well as sadness, on this path.
Engendering compassion
And I want those who have no experience with NET cancer–or any other rare or fatal disease–to gain some understanding of what it means to face a disease without a cure. I want people to understand what it is to be a widow, widower, or orphan who has had to walk someone to the end of life too young. I want people to understand the emotional cost of such a loss. I want them to know what it does to change your view of the world and the people in it.
It is a reality none of us wants to think about…
As my Grandfather used to say: “Intelligence is learning from your own experiences; wisdom is learning from the experiences of others.” I hope, in addition, my posts will encourage some compassion to take root in the hearts of those fortunate enough not to be where too many of us are. I sell a piece of my soul for that every time I write something.
People talk about the beauty of a blue sky. But awareness of what clouds do can change our perspective on everything.
“I want to go home,” Jane said in the quiet whisper that was all the voice she had after the tracheotomy they’d done so they wouldn’t have to ventilate her again. “I want to go home.”
And then we need a cure.
I told her we couldn’t do that yet. I told her she had to be patient. I said we hoped she’d be in rehab by Christmas–and home by mid-January. I promised her we would go back to the Lake over February vacation. “I want to go home,” she repeated.
What she meant
I believed all those things were true. But she got angry with me that night. “I want to go home,” turned into the cold silence she gave me whenever I did something wrong or she was convinced she knew better than I did. I should have listened to her better.
‘I want to go home.’
Twelve hours later, she would go into the coma that would end in her death. It was only later that I figured out what she meant by, “I want to go home.” She knew she was dying–and she didn’t want to die in a hospital bed. She wanted to die in her own.
Living failure
I failed Jane that night. I failed her just as I had failed her by not getting her to go to the doctor earlier in our marriage. Had I done so, maybe we could have bought her a few more years of tennis and long walks along the beach. Maybe, now, I would hurt less than I do, even had she died.
She knew she was dying…
I don’t know that getting her to the doctor in February of 2010 when she nearly passed out in front of her students with a piece of chalk in her hand would have made any real difference. I know I tried. I know she refused to go. I know I should have tried harder–but moving Jane, once she made up her mind was nearly impossible. Three years of dating and 20 years of marriage had demonstrated that.
Home for the holidays
Sometimes I think about the consultation with her heart surgeon in mid-October. He wanted to put the surgery off until after Christmas so Jane could enjoy the holidays with her family. That would also give her oncologist more time to lower the cancer load through the use of the few tools we had then. That would improve her chances.
I failed Jane that night.
In hindsight, I should have suggested doing the surgery sooner. Maybe the damage to her heart would have been less. Maybe the carcinoid crises would not have been so severe. But how much time would that have bought her? What would the quality of that time have been? And maybe she would have died that much sooner.
Nothing to be done
Intellectually, I know nothing I could have done differently would have made any real difference. None of the doctors she might have seen would have known about NET cancer, wouldn’t have ordered the one test we had even if they’d heard of NET because, “It’s so rare, it couldn’t be that.”
I should have suggested doing the surgery sooner.
They’d have poked her and prodded her and done nothing but make her miserable. Jane didn’t like being touched. She didn’t like going to the doctor–at least not for herself. Strangely, she made certain I got my physical done and peculiar symptoms checked out. She made sure her parents did, too.
Nothing to be done
It took me three days to get her to the doctor when her arm went numb and began to swell. She went only because the biopsy report on her cancer was coming in the same day. There was a blood clot in her shoulder. Her hospital stay for that was the first night we slept apart in 15 years.
Jane didn’t like being touched.
Even today, we have nothing that really would have helped Jane by the time she was diagnosed–and certainly nothing that would have cured her.
What she did
She injected herself in the belly with a blood thinner every morning for the blood clots. She injected herself twice a day in the belly with octreotide. She waited patiently every four weeks for her Sandostatin to warm up so they could inject it into her buttocks.
…nothing that would have cured her.
None of it did much for her. She couldn’t eat more than a few bites at any meal. She had daily diarrhea. She had nightly insomnia. Her belly was full of fluid from the leaking valves in her heart. Her world was shrinking every day. She just wanted to go home.
Things to be done
The only thing that would have helped was the early diagnosis we still, today, don’t have. We need a simple, inexpensive blood test we can make as routine as the one we have for prostate cancer.
None of it did much for her.
And then we need a cure–a cure that is so effective that NET cancer dies and the patient goes home to their family to live a normal life until old age takes them.
What did home mean to us? It meant sitting on the deck at night and watching the hummingbirds; it meant walks along the boardwalk or the beach; it meant mornings in the garden and quiet afternoons reading together under the oak trees. But most of all, it meant time in each others presence–bathing in the love we had for each other.
We diagnose roughly four times as many cases of NET cancer as we do cystic fibrosis in the US each year. But cystic fibrosis gets noticed. We diagnose roughly four times as many cases of NET cancer as we do MS. But seemingly every county has an MS Walk. We diagnose roughly two-thirds as many cases of ALS as we do of NET cancer each year, but ALS inspired the ice bucket challenge.
…we haven’t had a breakout moment, yet.
All four of these diseases are considered rare, but ask the average person about them and chances are they’ll have heard of three of those diseases. The odd man out is NET cancer–even though it affects more people than any of the other three.
Getting noticed harder than it looks
I’m frustrated by that fact. I’ve written on NET cancer for five years. I’ve gotten reporters and patients and caregivers to write about it. I’ve made videos and PSAs and talked on the radio about it. And when someone is diagnosed with the disease, Walking with Jane is a place new patients often find themselves. But none of those efforts–here or elsewhere–has created more than a tiny ripple outside the NET cancer community.
The odd man out is NET cancer…
I can only imagine the frustration of the people at the NET Research Foundation, who’ve been at this for more than a decade. Nor can I even begin to imagine the frustration of the people at the Carcinoid Cancer Foundation who’ve worked for nearly 50 years to raise awareness of NET cancer.
Who gets noticed?
What does it take to get noticed? A child with a cute story helps–at least it did with cystic fibrosis. The kid heard the name of the disease and turned it into 65 roses. That’s probably not going to help us, sincere have very few patients diagnosed before their 20s.
A celebrity who publicly acknowledges having the disease also seems like a winning strategy. ALS had Lou Gehrig–though the Pride of the Yankees is long dead. Steve Jobs could have filled that role for NET cancer. It didn’t happen–and likely won’t.
Marketing who we are
But MS has gotten there with neither a celebrity nor a cute kid. They’ve built their identity one piece at a time. It would seem that’s what we will need to do.
Our 3-in-3 group gathered today for our monthly meeting. A volunteer with a background in marketing at a large firm joined us. We brought her up to speed on what we’ve done so far. She’s thinking about the marketing problem NET cancer presents.
Why we need to be noticed
We have made progress in recent years. We have online support groups no one imagined 10 years ago. We’ve gotten local TV, radio, and newspaper attention in a number of markets. Students hear about it frequently in med schools. We have several cancer centers with growing NET cancer programs.
But we haven’t had a breakout moment, yet. We need one. We need one so more doctors are aware of NET cancer and think to order the tests we have earlier in the process so we can catch the disease in an earlier, more treatable, phase. We need one that will create a sustained source of income for our researchers. But most of all, we need one for our patients so they can get the treatment and the therapies they need–and deserve.
Getting noticed: Every campaign should have a button. This is the button Walking with Jane designed for 3-in-3: The Campaign to Cure NET Cancer. Let’s ride this horse to support the research we need to have to find a cure.
