Our biggest fundraiser last year was our annual clam boil. It helped fund the walks of multiple members of our NETwalkers Alliance team.
Six months of event planning
We have a wide range of events over the next seven months–culminating in the Boston Marathon Jimmy Fund Walk at the end of September. Most focus on NET cancer, but in keeping with my determination to make even the training walks count, some other things get their innings.
Ongoing/Current
January-February–t-shirt sponsorship campaign. If anyone knows a likely business…
February-early March–semi-annual direct mail campaign
Fundraising events
April Date TBA–Spaghetti dinner at Lyrics Bar & Grill in Tiverton, RI. Maybe a different date. Maybe clam cakes and chowder instead, Still working out the details with the owner. I hope to have that worked out by the middle of next week.
Last week in June or second or third week in July, Miniature Golf tournament at Caddy Shack in Dartmouth, MA. I have to wait for the owner to get back from Florida to firm up the date. Once I have that date, I’ll do a business mailing looking for tournament sponsors.
Late July to mid August–second direct mail campaign.
August 4, Hank Landers Golf Tournament, Bradford Country Club, Haverhill MA. A member of our Walk team runs this in memory of her dad. 1 p.m.-8-9 p.m. Banquet follows tournament.
October 15, Clam Boil at LePage’s Seafood & Grill, Fall River, MA 4-8 p.m.
Various Craft Fairs. I’m setting up my schedule for this later this month. If you have one within three hours of Fall River, send me the details and we’ll talk.
Apparently, the Grange is no longer available for our yard/craft fair. If anyone has thoughts on a new venue…
And we are always looking for new ideas for fundraisers. I’d ideally like to have one every month. Thoughts?
While these three Walks are not cancer related, I do them each year as part of my training–and because I know too many people who have dealt with these issues–or are dealing with them.
Cancer Walks & Rides
June 22-23–Relay for Life of Greater Fall River, Bishop Connolly, Fall River, MA. 3 p.m Friday-10 a.m. Saturday. We will do Stuffies and Chowder from the Food Tent and we will need help to serve that. We will also have people walking the track. The team will have a site on the track, but won’t use it as much more than an area to sit in. If people want to stay overnight, they can set up tents there Thursday night or Friday afternoon.
August 4-5–Pan Mass Challenge. We ride with Heidi’s Heroes. I will do the 50 mile Wellesley-Foxboro-Wellesley loop since I need to be in Haverhill Saturday for the golf tournament. Other members of the team are doing other routes–some on one day, some on the other–and some will try the whole thing over two days. Our team goal is $100,000. Sign-ups for this started in January. There is a substantial discount for signing up before March 1.
September 23–Boston Marathon Jimmy Fund Walk. My current plan is to do the entire route, starting in Hopkinton about 5:30 a.m. We also have people who start at 13.1 in Wellesley, 10K in Newton, and 5K at the Jimmy Fund Building. Our team name is the NETwalkers Alliance, which I captain. We are part of the #cureNETcancernow group, which I also head. Our team goal is $100,000. The group goal is $250,000. Sign-ups for this are supposed to start the first week in March. All routes end in Copley Square and trace the BAA course.
I would certainly love to have some training partners for the preparation involved in all of these events. Right now, I’m just walking, but I’ll be headed for the gym at some point soon–and getting on the bike as soon as the weather seems conducive.
Other bits and pieces
I meet monthly with our Marathon Walk contact and 3-in-3: The campaign to Cure NET Cancer in Boston at the Dana-Farber Cancer Institute. The latter group includes the doctors in the NET cancer program and Hillary Respucci from the development office.
I’m also trying to set up with the City of Boston to do informational leafletting about NET on Boston Common a couple of days this summer.
Clearly, busy times ahead. I hope you’ll join in on one or more of the above efforts.
The initial era of Walking with Jane is drawing to a close. As we head into the next era, we need to rethink what we are doing–and redesign the website in accord with the new role and the new goals of the organization.
Redesign long overdue
Just about 6.5 years ago we started the design of walkingwithjane.org. At the time, it was a state-of-the-art design. We tinkered with it over the first year or so, but content reigned over all else in terms of effort. We had a particular set of goals in mind, and designed accordingly. We haven’t done a redesign since.
…I’d like your input…
Last year I was on the periphery of the design of the 3-in-3 campaign website. The rough draft blew my mind. It drew on everything that has evolved over the last several years. It was the website I hope we would have designed today if we started from scratch.
Redesign needs to reflect changes
Except, it’s not. There are features in it I like, but it was designed for a very different purpose than this one was. Nor is this website designed for the new focus I have in mind for the next three years of Walking with Jane. Times have changed. Our goals have changed. This website must change to reflect those changes.
The rough draft blew my mind.
In 2011, I felt we needed to be all things to all people. It proved too great an undertaking for one person to maintain. Others have come on the scene who do what I wanted to do, only better. The Carcinoid Cancer Foundation provides better resources for patients and caregivers than anything I can provide. We now have dozens of support groups. We have other sites and individuals gifted at translating doc-speak into human terms.
Redesign for general audience
But we are still weak in two areas: fundraising and general awareness. NET cancer research funding has shown steady improvement since 2010, but still lags far behind diseases with fewer patients at risk. NET cancer has become the second most prevalent form of gastrointestinal cancer, trailing only colon cancer. Within three years, we can expect it to reach levels that will end its legal status as a rare disease.
Our goals have changed.
Walk down the street and ask 10 people what cystic fibrosis, pancreatic cancer, or MS are and people will know them. Ask those same 10 about NET cancer–more prevalent than any of them–and you will meet blank stares. If doctors can’t detect what they don’t suspect, can’t suspect what they’ve never heard of, we cannot expect people to donate to research a disease they don’t even know the name of. Nor can they suggest to their doctors that their symptoms may add up to something more deadly than a little intestinal discomfort.
Redesign for medical folk, patients
We need to continue to educate primary care doctors, physician assistants, nurses and specialists likely to encounter NET cancer, as well. I talk with every doctor and nurse I encounter. Rarely have any of them even heard of NET cancer even under the term carcinoid. Those who do, rarely know anything beyond what they learned years before in a passing mention in school.
…more deadly than a little intestinal discomfort.
And we need to continue to help patients understand the various treatment options they do have through the personal stories of patients who have experienced things like PRRT, telotristat, and liver embolization, to name just three. As the number of treatments grows, patient awareness of those treatments needs to grow as well.
Redesign input requested
I have some ideas about what a redesigned walkingwithjane.org looks like. I’m talking with some web designers over the next few days. But I’d like your input as well, both in terms of what the site looks like and what the content needs to include. What can’t you find that you need to find?
…we need to continue to help patients…
And I’d also like you to think about sites we need to link to that are doing good work. I don’t see a point to duplicating what others are doing well or have the resources to do better than I ever will. For example, if you want to find a doctor, you can’t do better than the Carcinoid Cancer Foundation’s listings.
You can post your thoughts in the comments section below or contact us at walkingwithjane@gmail.com.
Help me stop doing what I hate. Let me finally be able to tell Jane her disease is dead.
Why I ride
I have to be honest: There are two things I really hate about the work I do with NET cancer.
The first is reading the daily notices about who has died overnight. I’ve reached a point that I know most of them. I’ve read their posts in support groups, met them at conferences. Every death reminds me that despite the money we’ve raised, despite the real progress we’ve made on understanding the disease, we still have no cure, we still have too few ways to ease patients’ suffering, we still have too few ways to improve both the length and—more importantly—the quality of patients’ lives.
I hate failure
And every death reminds me that I have still failed to keep my promise to Jane that I would one day stand at her grave and tell her NET cancer is dead.
On August 5, I’m putting my 65-year-old body on a bike and peddling 50 miles as part of the Pan Mass Challenge. The money I raise will go to NET cancer research at the Dana-Farber Cancer Institute, one of the leaders in NET cancer research in the years since Jane’s death.
Can you help?
Last week, I donated $1200 to that ride. Someone else ponied up $100—an amount an anonymous donor will match later today. That person will match every donation to my ride—no matter how large or small–up to $2500 total.
If you can donate, I’d appreciate it. If you can share this post, I’d appreciate that, as well.
And if you’d like to join the NET Team for any part of the ride, that would be cool, too.
For seven years, my Saturday ritual has included a visit to Jane’s grave. Today seemed different.
The cemetery
I drove to the cemetery this morning. The ground was covered in a thin coat of snow and there was a touch of wind. It was cold, but I’d dressed for it. I stood at Jane’s grave. I said some things to her stone–private things and not so private things. The things one says at the grave of one seven years’ dead after seven years of mourning.
Tell them you love them in word and in deed.
I received no signs–no acknowledgment. I didn’t expect any. Her rebirth came nearly three years ago. I can see her toddler form in my mind’s eye, can see her parents, can almost hear her new voice. Her soul remembers me, but not her child-mind-body. She has new and old work before her–work that eventually will take her to new places and new loves.
The length of seven years
I miss her. I will miss her until Time’s river brings our souls together again some lifetimes from now. In the scope of time, that will be the blink off an eye. But that is not how we experience time in these mortal vessels. From that perspective, seven years is both the blink of an eye and an eternity. Today stretches on infinitely despite the efforts of my friends to distract me–despite my own efforts to distract me–from the events of seven years ago.
I received no signs–no acknowledgment.
A death watch is a hard thing. The details etch tendrils of acid into the brain more deeply than any but the brightest joys–and even those joys they somehow occlude and pervert to a degree. I can see Jane coming down the aisle toward me on our wedding day, remember with crystal clarity waking up on Christmas morning in our new home. Each Valentine’s Day morning, each Christmas morning is still there. And yet each now has a faint tinge of what we did not know was coming.
An imperfect love
In some senses, those memories are the richer for that knowledge. But they remain painful to look at–almost too painful to be fully enjoyed. When I return to the present moment, I know there will be no more new memories of the two of us together–not in this lifetime. I am starved for the simple joy of her voice coming through the door, of the simple note tacked to a door, of her feet in my lap as we watched TV or graded papers.
Today stretches on infinitely…
We argued. We disagreed with each other. Sometimes we shouted at each other. There was nothing perfect in us or in our relationship. But we loved each other–our lives wrapped up in each other. Our souls meshed at every level. We thought everyone’s did. But we also knew maintaining that mesh required an every day effort from both of us–even in anger, even in pain.
Death is easy–compared to love
Letting her die was easy compared to what followed. Her body failed her. I knew what she wanted when there was no more hope, no more value to her going on. I loved her enough to let her body go–let her soul move on. But it broke my heart in ways neither of us saw coming. Seven years later, it still hurts.
…our lives wrapped up in each other.
And yet, I keep trying to move forward one step at a time. Somehow, these two days have a sense of closure to them–the kind of closure funerals bring in our mythology of death and mourning, but rarely deliver to those closest to the one dead. I have cried a different kind of tears this weekend, tears that seem to say good-bye rather than express the pain of mourning. There is sorrow and hurt in them–yet something more, as well. I can’t explain that something more–just report its existence.
Seven years’ of lessons
The journey continues. The work continues. NET cancer still needs a cure. The world still needs the lessons we spent our lives serving–still needs ambassadors for unconditional love, for the use of evidence and logic and compassion, for all the things we tried to be flawed exemplars of. Death does not stop us or end our work–just shifts it to other venues.
Seven years later, it still hurts.
Tonight, give your loved ones an extra hug, an extra kiss. Tell them you love them in word and in deed. Give an extra thought to those who live on the fringes–to the homeless, the hungry, and the bereft. And remember the sick and the dying and those who care for them. Do all you can to lift the burdens of others. It is what Jane did every day of her life. It is what I try to do.
I restarted this ivy heart shortly after Jane’s death. The original plant died while Jane was in the hospital. It sprouted a bit that spring. The change since then is remarkable.
A year of change
My friend John died July 1. August 8, I had minor surgery to remove a basal cell skin cancer from my nose. I fought off a cold in September, another in October, the flu in early November and an intestinal issue last week. This weekend marks the seventh anniversary of Jane’s death. My mind, my body, and my soul are tired. Something needs to change.
I need a real break…
Change has very much been in my mind much of the last year. Too much of what I am doing seems pointless. Much of what isn’t pointless, others do far better than I can do. I’ve always believed one should let other people take over when they’ve proven they can do the job better. In those areas, it’s time I did that.
Change over seven years
We have literally dozens of online and offline support groups for NET cancer. Those groups spread the latest NET cancer treatment information to patients and their lay caregivers quickly and efficiently. Ronny Allen and others have taken on the task of putting the latest knowledge into lay terms. Ronny’s site dwarfs this one in every way that matters. It’s time for me to move on from that piece.
Something needs to change.
The Carcinoid Cancer Foundation has set up a place for patients to tell their stories on its website. Increasingly, patient stories make the local print and broadcast media across the US–and across the world. There is more to do there, but the job is getting done better than I can do it. It’s time for me to move on from that, too, except where patient experiences with specific treatments are concerned.
The change grief creates
When I began this, Jane’s story needed to be told. I’ve told it. I’ve told it from every meaningful angle–likely in more intimate detail than anyone needed or wanted to hear. I have also told the story of my grief to the NET cancer community in far greater detail than most would want to hear.
It’s time for me to move on from that piece.
That grief has driven me to a kind of madness. I live too much in a form of solitary confinement. I spend too many days and nights alone with little more than a keyboard and disembodied voices for company. Even when I go out, I am too aware of being alone in a crowd–even when I am out with friends.
Where Walking with Jane began
When I began this work seven years ago, I saw three things that needed addressing: funding, medical awareness, and public awareness. While we have seen improvement over the last seven years, those remain the three intractable problems that stymy our efforts. We can’t fund research without money. We can’t get better diagnostics without greater medical awareness. We can’t get money in the quantities we need without greater public awareness.
That grief has driven me to a kind of madness.
At some point, I lost track of those three things. When patients asked questions, I got caught up in answering those questions. When patients needed emotional support, I did what I could to answer that need. When caregivers needed an understanding ear to listen to them, I tried to do that.
Unexpected change
I forgot I am one human being. In trying to be all things to all people I could forget the burdens I carried for a time. And I could ignore the larger issues I set out to find answers to that seemed beyond my powers to achieve. At least I could feel I was doing some immediate good.
…funding, medical awareness, and public awareness.
My ego got involved, too. I wrote, day-after-day, for years, for an audience of 25-30 regular readers. They were all people I already knew. I needed to attract a general audience that had not heard of NET cancer before who would be moved to do something by Jane’s story. And I couldn’t do it–I couldn’t create that audience.
Change in audience
Without the patient and caregiver audience, I’m not sure what I would have done. One can only write in a relative vacuum for so long before doubt climbs on board. I have no doubt telling Jane’s story has helped many patients. I have no doubt those stories will continue to prove helpful. But telling that story has done little to reach the outside world with the NET cancer story.
My ego got involved, too.
This website has largely lain dormant over the last year. Some of that had to do with helping care for my friend John. Some of it has had to do with my own health issues–both physical and mental. But a big chunk also has had to do with my own frustration. It seems, sometimes, that everything I put my hand to fails–but the moment someone else picks up that same task, they succeed.
Moments of doubt
And I can’t convince myself that somehow I’ve inspired them. People say that to me with some frequency but I don’t see it. They see a role that needs filling and they fill it. Sometimes, after they are well started, they see something I did or am doing. But the thing that started them had nothing to do with me–just with the need I failed to fill effectively enough to make the difference they make.
This website has largely lain dormant…
The last 7.5 years have been the most difficult of my life. They began with Jane’s NET cancer diagnosis and her doctor’s confession that he knew nothing about the disease. They’ve included rising and dashed hopes, multiple deaths, dozens of projects started but never finished, and more mental and spiritual anguish than I can describe. We’ve seen much change in the NET cancer universe over that time–but not nearly enough. We still have no cure.
The battle continues
I don’t walk away from a fight just because the opponent refuses to go down easily. I don’t give up over my own failures–or anyone else’s–either. But sometimes one needs to consider a change in tactics.
…the need I failed to fill…
The focus of Walking with Jane will remain NET cancer. But a return to first principles–and first goals–seems in order. We need to raise public awareness of the disease for two reasons.
Public awareness focus
First, we know there remain many people out there who have NET cancer and don’t know they have it. They suffer the various vague symptoms and travel from doctor to doctor looking for answers–answers the doctors don’t have because they can’t suspect what they’ve never heard of.
I don’t walk away from a fight…
Second, only by broadening public awareness can we generate the funds we need for the basic research that will open the door to real progress on treatments and potential cures. We can’t continue to rely almost exclusively on funding from donations from wealthier patients and their families for the research we must have. A broader donor base that includes both patients and non-patients will generate more funding than either group alone.
Physician awareness must change
But public awareness is not enough. We also need far better physician awareness than we have. The NET cancer landscape has changed substantially in recent years–but primary care doctors remain largely unaware of the existence of the disease, let alone the changes in diagnostics and treatments.
A broader donor base…
Virtually every day a NET cancer forum patient reports conversations too similar to what Jane heard on the day of her diagnosis. Worse, many doctors who do have knowledge of the disease work from a knowledge-base that is a decade old or more. That, too, needs to change.
Revamping our approach
Starting almost immediately, then, Walking with Jane will begin reinventing itself. We’ll focus on general physician and public awareness in the coming year, as well as fundraising. We’ll continue trying to support patients with first-person experiences with new treatments. But I’ll write far less about Jane and spend significantly less time monitoring patient support groups–or writing things aimed at those groups, myself.
…public awareness is not enough.
In mid-January, we’ll undertake the first major redesign of this website since its creation in 2011. We’ll create separate tracks for patients, primary care doctors, and the general public. We’ll do more to link patients to other sites that do a better job of addressing their concerns than we can do here. We’ll use our Facebook page in different ways than we do now.
And, in the year ahead, we’ll do more general information leafletting in public spaces, as well as other awareness focussed events for both the general public and physicians.
My own needs
But I’m tired. John’s last days took a lot out of me. Memories of Jane’s last days are tearing me up inside. I hurt physically, mentally, emotionally, and spiritually. I need a real break–or at least to slow down. I have a craft fair I’m committed to and a Facebook Awareness Campaign that runs through the end of December. The awareness campaign is largely already designed–most of that is simple posting and sharing.
Starting almost immediately…
So after December 17, I’m taking some time off. For about a month, with one exception, I’m going to try not to think about NET cancer. I may take a trip, do some writing, take some pictures…or I may just work on some house projects I keep thinking about doing but never get to. A few weeks without structure might make a good change for a man who plans just about everything.
If you can’t attend a NET cancer fundraiser, Giving Tuesday is a good time to support NET cancer research. Thoughts and prayers don’t fund a single research project–your donations can.
Shopping thoughts
Black Friday, people shopped. Their thoughts were focussed on the bargains to be had on gifts for loved ones. My thoughts, too, drifted to the bargains. I had tools to replace and some lights I wanted that went on sale.
…each of us can make a difference.
Small Business Saturday found people with a different set of shopping thoughts. I support small businesses near me all year in preference to the Big Box Stores and the online giants. But I went out Saturday to order a print for my living room. Later this week, I’ll make a trip to my local upholsterer to get a chair rebuilt Jane and I bought for our first apartment.
Cyber Monday grows every year–largely without me. But I understand the thoughts that drive the day. And I have a small personal stake in that Amazon sends some money our way every few months through the Amazon Smile program.
Giving thoughts
But today is Giving Tuesday–a day to move our thoughts beyond ourselves to the real needs of others. I’ll write a number of checks today–and not all of them will go to NET cancer groups, though that is a place I focus most of the year. There are homeless to house, hungry to feed, children who don’t have parents, students who need books, and a number of other rare diseases I’ve supported for decades.
…Amazon sends some money our way…
That said, though, NET cancer remains my lodestone. I’ve already written and mailed my checks to support the NET cancer program at Dana-Farber through the Walking with Jane Fund. That fund also supports the 3-in-3 Campaign as it heads into its final year. We are closing in on the $3 million goal we set for it. That money has earned us a new lab and greater support from the leadership at Dana-Farber.
NET giving thoughts
Today, I’ll send substantial checks to the Carcinoid Cancer Foundation and the NET Research Foundation. The first group does more for patient outreach and medical education than anyone–a job it has done for decades. The second focusses on funding research on a global scale. Both are worthy of your support.
…NET cancer remains my lodestone.
Historically, Walking with Jane’s focus has been supporting the NET cancer program at DFCI. We don’t yet take credit cards, so if you want to donate to us, you’ll need to print out a form and send us a check. Anything that comes in between now and January 1 will support my Marathon Walk or my PanMass Challenge ride in 2018. Officially, neither of those launches until January, but whatever I raise now for that will be matched up to a total of $7500.
Scholarship thoughts
Walking with Jane also funds five scholarships to students working to become science teachers or enter the medical professions. Each year, we present a four-year, $1000 a year scholarship to a graduating senior at Westport High School. The student is chosen by the science department there. We also present an annual $1000 scholarship to a student at Bridgewater State University, Jane’s alma mater. They have a committee that chooses the recipient.
Both are worthy of your support.
I’d like to do more than that. A $1000 today is not a huge chunk of money. If enough people made enough donations earmarked for scholarships, I’d increase the size of scholarships we give. My own finances are stretched as far as they can go.
Think–and give–regionally
There are a number of other NET cancer foundations working regionally to support NET cancer programs near them. I’m know every regional NCI cancer program that has a NET cancer program in it could do with your support as well. The truth is every NET cancer research program is hungry for the money to fund their research. Things are better than they were 10 years ago, but that doesn’t mean they are good. We still have too little money to fund the research we have to have if we are going to fund a cure. Another good NET cancer foundation to give to is The Healing NET Foundation. They have a $1000 match going today.
I’d like to do more…
Please, wherever you are, do what you can. It’s Giving Tuesday and each of us can make a difference.
I am thankful for the many former students and friends who have worked with Walking with Jane two raise money for NET cancer research.
Thankful for what is
I have much to be thankful for: I have cupboards stocked with food, I have a roof over my head—a heated home with comfortable chairs and a warm bed to sleep in. I have clothes to wear at every season of the year. I have friends who would walk to the Gates of Hell with me if I asked them to.
It’s painful to lose your wings…
Most importantly, I have my health. Yes, I have the aches and pains anyone my age experiences. Yes, I’m still recovering from the summer’s surgery. And yes, I’m still grieving the loss of my wife seven years after her death. But my mind still works and I can still walk a goodly distance at a pace that would leave many a younger person gasping at the roadside.
Thankful but pained
One night, when Jane was in the hospital and unconscious but still with weeks to live, I stood alone in the waiting area outside the ICU. I was looking out the window at the city beyond. But the city did not register. The cars in the streets below did not register. My mind was in the room with Jane.
I have much to be thankful for…
I was always in the room with Jane. If I went to dinner in the cafeteria, my mind stayed with her. If I drove home to pick up clean clothes and pay the bills, my mind stayed with her. When the nurses sent me out to take an afternoon’s walk, my mind stayed with her. Truth be told, part of my mind has never left that room.
Memories and weights
I still see the early morning view of Binney Street from her window—the cancer patients pulling up to the door of the Dana-Farber clinic and walking in. I still see Jane sleeping in her bed, still see her not sleeping when the bouts of insomnia came on, still see the madness and anger in her eyes. But I still see the smiles, still feel her hand in mine, still feel the tears and the final brush of her lips as she died.
My mind was in the room with Jane.
But that night, standing alone, looking out over the city, the enormity of what I was doing came down on me like the world settling onto Atlas’s shoulders. I had two decades of conversations to rely on—and they were too slender to do more than be crushed beneath the knowledge that I really was at the point of the spear—and thoroughly alone. I had friends and doctors behind me, but the weight was mine—the decisions were mine.
Living with decisions and consequences
On good days, I know I made the best decisions I could, given the information I had to work with. On bad days, the guilt is overwhelming. Most days fall between those two extremes. I console myself that Jane’s death—like her life—made a difference in the lives of others.
…the decisions were mine.
Seven years ago today, Jane was in a coma. I talked with her doctor. I talked with a friend who had come up to visit. Jane had come through one coma already. Part of me said,”Enough. Let her go.” But there was hope, I believed, with the right approach and a bit of luck, that Jane’s desire to be the first person to beat NET cancer might yet be realized. I let them convince me the chance was good enough.
Thankful, but…
And for 13 days, it looked like the right decision. And then, suddenly, it wasn’t. If you’ve been in my position, you know what that feels like. If you haven’t, I hope you never do.
Jane was in a coma.
This is what it is to be a caregiver and lose the person you love at the end. You can have food, shelter, clothing and friends. You can know how thankful you should be for each of those things—and you are. You can have your health and know how valuable that is, and be thankful for that, as well.
The terror of the void
But there is this void you can’t fill—that you are afraid to even try to fill. At first, you give yourself altruistic reasons not to. “I would never want to put someone else through this,” you tell yourself. “I don’t want anyone to feel they have to live up to my image of the one I’ve lost—that they’d constantly be compared to an idealized memory.”
You can know how thankful you should be…
The truth is, you’re terrified. You don’t want to go through watching someone else you love that much die again. You don’t want to hurt like this again. You don’t want the responsibility or the guilt or the pain. You come to prefer the real pain of solitude to the potential pain of that level of loss.
The end of the world
The Mulla Nasrudin, a Sufi teaching master, put it best when he said there are two ends of the world. “The lesser end of the world is when I die. The greater end of the world is when my wife dies.” Truly, the death of one’s other half truly is the end of the world. I’ve experienced nothing more painful.
But there is this void you can’t fill…
Truth be told, I’ve had momentary crushes—feelings I’ve squashed nearly as quickly as they appeared. When I have thought women have shown potential romantic interest in me, I’ve been quick to drive those interests away–or into safer channels. I’ve never been particularly quick at picking those things up, so perhaps those moments were imaginary. But I’m terrified to think any of it might be real—and both my conscious and subconscious minds have proven quick to put a stop to any potential relationship beyond friendship. Even that, sometimes, frightens them.
Of wings and hearts
It’s not that I can’t imagine falling in love again. I hear Jane’s voice in my ear constantly, reminding me that part of that final Saturday conversation before she went into the hospital was about her desire for me to find someone else if she died—to fall in love again. But my wings were singed long before I met Jane. She healed them, made them strong again. But her death charred them back to cinders.
Even that, sometimes, frightens them.
It’s painful to lose your wings that way. It hurts like Hell to have half your heart carved out of you without benefit of anesthesia. That’s what grief is like when the love is strong enough. But I can’t live with half a heart—don’t want to live without my wings. Still, I remain terrified of what happens if they fully recover. And equally terrified of what happens if they don’t.
We raised just over $5000 last month with a dinner fundraiser. That’s not a lot of money compared to what we ultimately need–but with the slim funding we have, every dollar counts.
Money remains too scarce in 2017
Money was a problem in 2010. The amount researchers had to spend amounted to less than we spent on Jane’s treatment in the four months from her diagnosis to her death. Jane telling her doctors to study her the best they could, in some ways, doubled the research money for the year.
Grants run out and have to be replaced.
Money remains a central problem for NET cancer seven years later. Yes, we have 10 times as much research money now as we did then. Yes, we’ve seen significant increases in money for clinical trials from pharmaceutical companies and other sources. But we need to find more.
Funding for research
We still spend far less on NET cancer than we need to. The disease is complicated in ways no one saw coming. Just growing tumors in test tubes has proven insanely difficult. Mouse models have proven largely pointless. The tumors often grow so slowly the mouse dies before we can get useful information from it. The DNA shows no major attackable weaknesses.
Money remains a central problem…
Our efforts seemingly remain largely limited to finding ways to slow the disease and ease patient symptoms. Yes, we’ve found better scanning techniques. Yes, we have a trial of one variety of immunotherapy going on at this moment and another variety in the works. But much of the last seven years has remained devoid of curative ideas. This is not to belittle the substantial efforts to find ways to alleviate patients’ symptoms. Quality of life very much matters–especially in the absence of a cure. But we should not have to choose between one or the other.
Funding for awareness
The lack of money has also hampered our efforts to educate primary care physicians about the NET cancer. Our first priority has been finding ways to help patients who know they have the disease. But we have no real idea how many additional cases we are missing because of simple ignorance. As I’ve written before, not only can we not detect what we don’t suspect, but doctors can’t suspect what they have not heard about.
The disease is complicated…
And too many primary care doctors have not heard of NET cancer. NET cancer patients outnumber brain cancer patients in the US by a significant number. Every doctor in America knows what a brain cancer is. Too many don’t know what NET cancer is. And too many who do know so little about the disease that they say things like, “You have a good cancer too have.”
The next round
We can’t deny that NET cancer research is much better funded today than it was even seven years ago. But we still have less funding than what amounts to a rounding error on many other forms of cancer. We need sufficient funding to mount and maintain a more serious basic research effort than we have today. We need sufficient funds to continue to find and test new treatments and new diagnostic tools. And we need sufficient funds to ensure that every primary care doctor comes to know NET cancer for the menace it is.
…doctors can’t suspect what they have not heard about.
So for all the improvements in funding we have seen in recent years, we have to do more. Grants run out and have to be replaced. Much research that we need to do goes unfunded because we can’t afford to fund everything that needs funding. And awareness campaigns for both doctors and the general public need not just planning, but the resources to carry them forward. For all the problems we have solved in the NET cancer community, this one remains very much on my mind.
Today would have been Jane’s 63rd birthday. Seven years ago, she was recovering from heart surgery.
Jane’s birthday present
“I got a new heart for my birthday.” Jane said that cheerfully seven years ago today. She had gotten out of bed, briefly, for a short walk down the hall. She’d begun doing other pieces of physical therapy. We were preparing to move her to the step-down unit as soon as they had a bed for her. They’d taken off the monitors as part of that preparation. It was truly a happy birthday for both of us.
…especially on her birthday.
Then the shift changed and the new nurse started doing her review of Jane’s condition. Jane’s blood-oxygen level had dropped into the upper 80s. Jane went back on oxygen, but the numbers refused to budge. Then they fell into the low 80s. They took Jane to another building for a scan in the wee hours of the next morning. I never got back to my hotel room that night.
Birthday night drama
None of us realized until weeks later this may have been the first of the carcinoid crises that would eventually kill her. We thought the problem came from a lung that hadn’t fully re-inflated after the surgery. Jane would spend many hours strapped into a CPAP mask over the next couple of days. She hated the mask. She was claustrophobic to begin with. Life in that mask was a hateful struggle.
I got a new heart for my birthday.
This was not the first complication in the replacement of the valves in the right side of Jane’s heart. Two days before a 4-6 hour operation had turned into 10 hours. First, they’d had difficulty placing the central line because Jane was so dehydrated her veins just didn’t take well to the needles. Then, in mid-operation, they’d discovered the damage to her heart was much more extensive than anyone had imagined. The surgeon had to build a new seat for one of the valves.
Two days before Jane’s birthday
I’d sat in the heart surgery waiting area as doctor after doctor came in to speak to other patients’ loved ones. At one point, I went for a walk down Tremont Street to Mission Hill Church. Senator Ted Kennedy had made a similar trek every day when his son was in the hospital fighting his cancer. Kennedy’s own funeral was held there years later–and Jane and I had watched it on television.
Life in that mask was a hateful struggle.
In college, I’d lived in that neighborhood. I’d watched the sun rise from a small park next two the church on many mornings. That afternoon, I sat in that same space for a time. Then I went inside and sat in a pew at the back of the church. Someone walked the Stations of the Cross as I sat there. I’m not Catholic–not even traditionally Christian. But the arches and the stained glass and the silence eased me marginally.
Into darkness
I walked back to the hospital, hoping for some news. There was none to speak of–just that the surgery continued. The people at the desk were supportive. They’d seen this all before–knew and understood my anxiety. Slowly, the room emptied out until I was the only person besides the person on the desk still there. At 8 p.m., they closed that area. I went to the lobby outside the ICU and let the nurses know I was there. Periodically, they gave me what bits of news they had.
In college, I’d lived in that neighborhood.
I tried to watch some television. It was just noise. Most of the time I stood at the window, looking out over the area I had once called home–and pacing back and forth, trying to burn off the nervous energy. I did that a lot in the weeks that followed when I couldn’t be with Jane for one reason or another.
Home by Christmas
Eventually, they told me Jane was in a recovery room and would be upstairs in a couple of hours. I called her father and sister to let them know, then settled in to wait for the surgeon. The surgeon came up about 11:30. He told me about the damage to her heart, the problems with her dehydration. But the surgery had gone well, despite that. He expected her recovery would go as planned–slow, but ultimately, she’d be home by Christmas.
I walked back to the hospital…
They let me see her about an hour later. They try to prepare you for what you will see. People sometimes pass out when they see someone like that. The paleness alone is difficult. There are lines and wires everywhere and you can’t touch the person you most love in all the world despite knowing how much you need to hug them–to let them know you are physically there and not just a disembodied voice in their dreams.
Back to the present
Wednesday, I had meetings with people at Dana-Farber, Jane’s oncologist, Jen Chan, among them. I had a meeting with people from the Jimmy Fund Walk in the morning. Then I went into Kenmore Square for lunch. I walked back to DFCI afterward for my meeting with the 3-in-3 committee. I was early, so I walked out to Mission Hill Church. They were in the middle of a service, so I didn’t go in.
…she’d be home by Christmas.
I walked back, going down the long main corridor at Brigham and Women’s Hospital, as I had during every day of Jane’s time there. It dawned on me only then I was retracing my steps on that day seven years before. My conscious mind was focused on meetings and the work in front of me. My subconscious was busy reliving the events that started me on this path.
Birthday memories
After the afternoon meeting, I walked back to the heart clinic building. I took the elevator to the sixth floor ICU. I stood, once again, in front of those windows. I looked out at the lights on Mission Hill. And I remembered the young man who once lived there. I remembered the older man waiting for news about his wife. I saw the face of the person I’ve become–and saw the work that remains for me to do.
…I walked out to Mission Hill Church.
Jane could have died that day seven years ago. She could have died from that first crisis the night of her birthday. I could have let her die when the second crisis took her down the following Monday. Sometimes, I think I should have. Sometimes, I think she would have liked any of those options better. The thought still haunts my sleep.
Contemplating different paths
I would be different today. I might be doing other things. Perhaps I would sleep better. Perhaps not. The events that followed shaped more than my life, though. They helped shape the lives of others as well–doctors, nurses, caregivers, patients. New knowledge emerged from those events–new alliances, new friendships, new ideas, new focuses, new procedures, as well.
The thought still haunts my sleep.
Jane’s death and the manner of it made a difference in the lives of others, just as her life had. But I miss her–and the loss still hurts–especially on her birthday.
Most people on our Jimmy Fund Walk teams rely on small donors to reach their minimum $300 goal. Finding those donors helps increase public awareness of the disease.
Public awareness strategies key
I spent yesterday in Boston in a variety of meetings about NET cancer fundraising and awareness. My morning meeting involved discussions about a potential NET cancer awareness event in the city sometime this spring. We talked about both an awareness walk and doing a series of “table” events in various locations in various cities with an eye toward reaching out the general public about the disease.
We need to do a better job…
While we’ve made too little progress on educating primary care doctors about NET cancer, we’ve done an even poorer job of reaching the general public. Some would argue that awareness doesn’t matter very much. I have to disagree, for two reasons.
Not as rare as we thought
First, NET cancer is not the insanely rare disease we thought it was even ten years ago. It has not yet achieved the level of a public health crisis–and likely won’t. But we’ve seen explosive growth in diagnoses over the last six years–an increase of about 2000 cases very year from 2010 to 2016–the last year for which we have statistics.
…reaching out the general public about the disease.
In 2010, we diagnosed about 10,000 cases in the US. By 2016 that number had swollen to 21-22,000 cases a year. In 2010, we had about 105,000 people living with a NET cancer diagnosis in the US. Today, that number tops 171,000. The number of people with the disease who have not had a NET cancer diagnosis yet is a matter of debate. Some doctors, privately, talk about 250,000 additional cases. Others, again privately, put the number far higher than that.
Implications of larger numbers
What we do know is even the small improvements in PCP awareness combined with the arrival of the Gallium-68 scan have unveiled a substantial number of new cases. We are closing in on the kinds of numbers that will end NET cancer’s legal status as a rare disease–as a true zebra. Much NET cancer funding is tied to that status.
…not the insanely rare disease we thought…
If NET cancer is, as appears increasingly likely, a significantly more widespread form of cancer than previously believed, people in the general population need to be made more aware of that fact. To do otherwise would be immoral. People in general need to know the symptoms the way they know what to look for to catch breast cancer at an early stage. Early diagnosis is critically important with any cancer. Public knowledge and awareness increases the chance of early diagnosis.
Solving the funding riddle
The second reason we need greater public awareness has to do with funding. We are currently too reliant on major private donors–those who give over $20,000 a year. One-third of the funding for basic research over the last two years has come from a single grant. When that grant ends in 2018, my understanding is that money is gone. There is no renewal option beyond that. We’ll need to find a way to replace that money or watch research funding–and research–shrink.
People in general need to know the symptoms…
About 20 percent of the money raised by 3-in-3: The Campaign to Cure NET Cancer, the funding campaign I chair for the Dana-Farber Cancer Institute’s NET cancer program, comes from small donors. We know we can count on that money year-in-and-year-out. The other 80 percent comes from major donors. The loss of a single smaller donor is generally fairly easy to replace. The loss of a single major donor can mean an entire line of research dies for lack of funds. The addition of a major donor can open an entirely new line of research.
Every donor matters
We need to keep major donors in the mix–honestly, we need to keep adding them. But we need to do more to cultivate the small and medium size donors more than we currently do. People don’t–can’t–donate to causes and diseases they have never heard of. They don’t donate to things they don’t feel a connection to. Nor do they encourage government and institutional spending on those things.
We’ll need to find a way to replace that money…
We need to do a better job of reaching out to the public at large about NET cancer. We need to do so for the sake of their health. But we also need to do so for the research funding they can help supply.
