Here are the base designs for the Zebra Herd Flash Mob I talked about in yesterday’s post.
The portrait of Jane will alternate with the bags that say Kill NET cancer before it kills someone you love.
On the patient and memory bags the names will most likely be handwritten.
walkingwithjane.org will publish a first-person piece from a NET cancer patient about her experience with liver chemoembolization in the next couple of weeks. I’m also in the process of writing a more general piece on the embolization process.
…getting your story out to a broader audience.
But that got me thinking: We have a lot of new and not-so-new treatments, procedures and trials going on that most people don’t know a lot about. It’s one thing to read a piece written in scientific language and quite another to read something by someone who has actually experienced it firsthand. I’m pretty sure there are few, if any, doctors or researchers who have taken CAP/TEM or had a liver ablation done on them.
What I’d like to do is a series of pieces, either written by patients or based on interviews with them, about things like liver embolization and what their experience was with that procedure. As I said we have a piece coming on the chemo form of that, but pieces on bland and radioembolization experiences would be good–and valuable–to have.
…few, if any, doctors or researchers…have…had a liver ablation done on them.
The object here is to demystify the process so that patients dealing with similar choices have actual patient experiences to help them unravel what they are about to experience.
This is basically a call for people to write about their experiences with various treatments and procedures, as well as ideas about what you’d like to see covered.
The object here is to demystify the process…
Or you could volunteer to be interviewed by me about a specific procedure or drug you’ve experienced if you don’t want to write about it yourself.
Four things immediately leap out at me as clearly being of interest: bland and radioembolization, PRRT, Gallium-68 scans, and CAP/TEM–which is in trials in the US but appears to be in use in Europe more broadly. Liver ablation therapy is another possibility, though I have seen fewer patients talking about it online. If you have experience with any of these–or some other form of therapy or testing–Walking with Jane is certainly interested in getting your story out to a broader audience.
…a call for people to write about their experiences…
If you have other things you’d like to write about–or things you’d like to see written about here–don’t hesitate to suggest them. And if privacy is a concern, we can certainly take steps to keep you anonymous. Please contact us at walkingwithjane@gmail.com if you’d like to do either one.
I follow about a dozen online NET cancer support groups. I check in with each of them for at least a few minutes every day. The stories I read in them, and the questions people ask, tear at my soul. Sometimes, they take me back to Jane’s experiences. Sometimes they open new possibilities of hope. Sometimes they tell me that someone I have come to know through their posts will no longer be posting because their battle has ended the same way Jane’s did.
…I’m not asking you for money.
I don’t comment very often. On medical issues, the doctors know much better than I do what a set of symptoms means. I try to be supportive when someone goes in for surgery or some other procedure–knowing how much those few words of support are to someone with NETs. I share these posts on those sites when what I’ve written seems appropriate.
Mostly, though, I listen. Walking with Jane‘s goal has always been to help patients–and the only way to do that is to listen to people talk until you understand what it is they need. Some of the most important pieces I’ve written in the last year emerged from patient concerns I first learned about by listening to what people in the groups were worried about.
…the questions people ask tear at my soul.
But there are some underlying themes in those posts that never really get addressed. They are the elephants in the living room of NET cancer that sometimes we desperately need to talk about–but are terrified to raise outside the edges of a conversation. In theater, we talk about the subtext of a script because people in real life never talk about the real issues they confront–and neither do actors on a stage.
The two biggest elephants in the room are interconnected. The first of these is we have no cure for advanced NET cancer–and very few NET cancers are discovered before they have become advanced. The treatments we have can slow tumor growth down for a time for some patients, can alleviate the symptoms for some patients. For a lucky few, those treatments can even shrink the tumors they have for a while.
…people in real life never talk about the real issues they confront…
And we have new drugs and procedures in the pipeline that may help more patients survive with a better quality of life for a longer period of time. But we don’t have a cure. We have ideas that may eventually turn into cures, but those ideas are only now getting into trials and are likely years from being proven and adopted or disproven and shelved.
But the lack of a cure leads directly to the second elephant in the room: People die from NET cancer every day. I have seen what that death looks like. It is something I can never forget.
…we have no cure…
And it is something we each need to work to change every day–no matter how difficult that work may seem.
For the last four years, I’ve walked the Dana-Farber Cancer Institute’s Boston Marathon Jimmy Fund Walk to raise money for NET cancer research. I’ve been joined by former students and by friends and families of those who have lost loved ones to NET cancer. Over the four years the groups I’ve walked with have raised over $130,000 to help fund research we hope will lead to a cure.
It is something I can never forget.
But last year was special. In April, I got a note from a young woman with advanced NET cancer. She wanted to walk with our team. She didn’t walk the entire 26.2 miles–she wasn’t sure she could. But she took on the 13.1 mile course. And she raised $7000 doing it.
By Walk Day, we had three more patients determined to walk at least part of the distance. One felt even the three-mile course would be a stretch for her–so she recruited three friends, in case she needed them, and pushed her wheel chair from the Jimmy Fund building to Copley Square. And I know of two other patients who made the journey over part of the course for the same purpose.
But last year was special.
The thing that strikes me about NET cancer patients is their bravery in the face of long–seemingly impossible–odds. They need to be brave because they know what will happen if nothing changes. Their caregivers need to be brave for the same reason.
For 40 years both the federal government and the cancer establishment largely ignored NET cancer because they did not see their support of it as cost-effective. That meant NET cancer patients became orphans totally at the mercy of the kindness of strangers–and there were very few kind strangers. The result of that less-than-benign neglect was likely hundreds of thousands of deaths.
They need to be brave…
And even since the “rediscovery” of NET cancer by those with resources seven years ago, the amount of funding NET cancer researchers have found still does not amount to table scraps left behind by the family dog. Last year, the total spent on NET cancer research in the US from all sources was no more than $10 million at best–and realistically likely less than $8 million.
I know what NET cancer looks like. I know how crippling the diarrhea, the flushing, the panic attacks–all of it, is. But we need every patient’s help if we are going to change the landscape of NET cancer. I know the commitment of time and energy being a lay caregiver for a NET cancer patient takes. I’ve lived it. But we need the help of very caregiver if we are going to save the people we love from this vile disease.
…table scraps left behind by the family dog…
On September 20, I will take on the Boston Marathon course from Hopkinton to Boston–26.2 miles. Between now and then, I’ll write letters and do every fundraiser I can manage. I’ll talk to women’s clubs and business groups and high school assemblies.
But I’m not asking you for money. I’m asking you for something more. I’m asking you to come walk with us, either on the Jimmy Fund Walk if you are here in New England, or on some other fundraising walk for your regional NET cancer program if you are not. Every NET cancer research program is dying for your help and support.
…change the landscape of NET cancer.
To quote another of my heroes, George Washington Carver: “Put down your buckets where you are.” If we are going to change the future, we all have to do more than we think we can to make it happen.
I had a 101.2F fever ten days ago, on the 51 month anniversary of Jane’s death. For the first time, I was not physically at her grave on the tenth of the month. The flu saw to ending that streak in a way no amount of rain or snow or heat or cold had succeeded in doing.
…we need to work more effectively together.
There is a line in The Who’s Tommy about sickness taking “the mind where minds don’t usually go.” My mind took that journey as fevered day turned into fevered night and fevered day for the better part of a week. I’m not sure what I learned from that reminder of mortality, only that something feels different.
I went to the cemetery Saturday, the first day my fever went below normal for a good portion of the day. It was rainy and raw and I gave myself a small relapse that night as a result, for all that I only stayed long enough to walk from the car to Jane’s stone, leave three kisses there, and walk back to the car. For the first time, the gesture seemed empty and almost silly.
…something feels different.
I had no sense of her presence there for the first time since she died. It felt as though her soul had moved on. Maybe it has. Maybe it is time I started thinking about my life without Jane as something beyond this endless war against NET cancer. Not for the first time did I remember that this is not the life she wanted for me. But it was the first time I thought, “maybe she’s right.”
For 51 months I have focussed on just two things: mourning Jane and killing NET cancer. Oh, I’ve redone some rooms and worked on expanding some garden beds; I’ve sorted through Jane’s clothes and possessions and sent them on to others where they could do some good; I’ve travelled to Seattle to visit family; but each of those things has been about mourning and dealing with loss.
…the gesture seemed empty and almost silly.
I’ve done some social things as well. But all of those have either been centered on NET cancer or served as a reminder that Jane is not here and that I am truly alone without her, no matter how many people are around me–and no matter how much they are focussed on me and trying to get me to feel better–to forget, even for a little while, the treasure I have lost.
A grief counselor suggested recently that I take too much responsibility on myself–that somehow I make myself responsible for all the ills in the world–and for solving those ills. She’s right. Every time someone dies of NET cancer, I feel responsible for that death. “If only you’d worked a little harder, they wouldn’t be dead–we’d have a cure,” the little voice that imitates Jiminy Cricket mutters in my ear.
…I am truly alone without her…
The rational me knows better, of course. I know precisely how that sense of responsibility was born back when I was a child. It is the burden every eldest child carries–especially those from large families. When a younger sibling did something wrong, even if we were not physically present, it was somehow our fault. We were supposed to set the example–and when they failed it was because the example we set was not good enough.
My parents added another layer of responsibility to that. Periodically, my brothers and I would be set some task–cleaning the cellar, mowing the lawn, something long and involved. I would do what seemed my fair share of the job–whatever it was–more quickly than whomever I was working with. But if I stopped there to let them do their share, I was told, in no uncertain terms, that I was to work until the job was finished–even if it meant doing more than the others.
…the little voice that imitates Jiminy Cricket mutters in my ear.
I grew up with the idea, then, that I was responsible for everything–no matter when I started and no matter how much of the job I actually did. I grew up with the idea that I was responsible for everything that happened both in my life and in the lives of everyone around me.
The result is, I set impossible standards for myself and ridiculous goals for anything I put my hand to. There is no such thing as “good enough.” Anything less than the highest standard I can reach is unacceptable.
…I was to work until the job was finished…
That I have rarely failed to reach whatever goals I have set–no matter how insane they appeared to people in the outside world–has reinforced the idea that nothing is impossible if I can put my mind to it and recruit enough of the right people to make it happen. Arguably, Jane’s death was the first time I had not found a way to outfox what any sane person would see as a no-win scenario. In some respects, the work I have done since on NET cancer could be seen as an effort to correct that failure.
But I have set myself a seemingly impossible task, especially in the way I have approached it. Just keeping up with the research on NET cancer is a significant time and energy commitment. Translating that new information into laymen’s terms requires another not insignificant amount of time and energy. Getting that information out to people who need it through this website, social media and podcasting, brings just that piece of this work to a 40 hour a week job.
…I was to work until the job was finished…
Fundraising and awareness raising consume similar amounts of time and energy. Record keeping, social media, public relations, team building, grant reviews… There is a reason the American Cancer Society employs the number of people it does–a reason that the household names in cancer funding employ the staffs they do.
There are at least a dozen small foundations working on NET cancer. Most are one-or two-person operations established and run by individuals whose lives have been touched–or destroyed–by NET cancer. We are, each of us, determined to bring this beast down. But too much of the time, we are working alone. We are isolated–and that isolation weakens the effect of our efforts.
…I have set myself a seemingly impossible task…
And even the bigger foundations–the Carcinoid Cancer Foundation and the Caring for Carcinoid Foundation–are hamstrung in their efforts by the tiny size of their staffs. I know what it takes to organize a conference, do a major mailing, maintain a website… What they do–what all of us do–is nothing short of miraculous.
But there is an awful lot of weight on a very small number of shoulders. And sometimes it seems like we are all trying to carry the full load by ourselves. We cross-post some things on Facebook, Pinterest and elsewhere. But we don’t seem to talk to each other very much beyond the needs of the moment.
…isolation weakens the effect of our efforts.
I’m probably the worst of us when it comes to that. It was the mistake I made at the beginning–and it is a mistake I have continued to make since. It has left me physically and emotionally exhausted–and when I look at what I wanted Walking with Jane to be and what it has become I know that I cannot continue as I am.
Back in January, I wrote a series of pieces on goals for the year ahead. Among those goals was the need to develop closer ties among all the groups engaged in the fight against NET cancer so that we could all do a better job. It is still an item on the to-do list.
…we don’t seem to talk to each other very much…
But we need to do more than simply unite the groups working on this in the US and elsewhere. We need to get patients and caregivers far more involved than they are now in the public relations, fundraising, and awareness sides of this. I tell Jane’s story constantly–and it is a powerful one that rarely fails to grab whatever audience I tell it to and move them to some action.
But each patient, each caregiver has a similar story to tell–and they are stories we need to tell–and tell to the broadest audience we can reach.
I tell Jane’s story constantly…
There is a stone on my desk with a quote from Helen Keller etched into its surface: “Alone, we can do so little; together, we can do so much.” We need to stop working in isolation; we need to work more effectively together.
It’s snowing again in southern New England. We’ve picked up another eight inches today so far. We could end up with as much as a foot by the time this storm drifts away sometime tonight. I cleared six inches from the driveway and walk about two hours ago. I’ll have to go out again in a little while to clear them again.
…even the answers we have are not very good ones.
Ten days ago, I planted some perennial seeds for this year’s garden projects. Earlier this week, I set up my plant lights as the first seedlings emerged from the soil a full week ahead of schedule. This weekend, I’ll start more seedlings and likely begin transplanting some of the things that are already up into bigger quarters.
Both my grandfathers were farmers and my father grew up on his father’s farm. He worked not only on his father’s land but on the neighboring spreads as well. He turned the soil, hoed out the weeds, bailed the hay, milked the cows and tended the chickens. But we didn’t have a garden until I was ten–and then, I think, only because my mother wanted one.
It’s snowing again in southern New England.
My mother’s first garden was a small thing–a 12 foot circle of dirt just outside the kitchen door between the house and the driveway. She grew tomatoes there, and very little else with much success. Radishes, I think, and gnarled carrots that were stunted and twisted by the clay and rock of New England soil. It was a good place to dig for worms.
Farming is in my blood but I didn’t have my own first garden until the year after I graduated from college. I was living with friends in a house that had a small yard with some raised beds and some leggy, unkempt roses nestled against the foundation. It wasn’t much, but it gave me some pleasure. I like to see things grow–and I don’t mind getting dirty in the process.
My mother’s first garden was a small thing…
I’ve learned a lot in my gardens–sometimes even about plants. I was impatient and short-tempered in my youth, but hiking up long trails with a heavy pack taught me that I needed to learn patience and my gardens were the place I learned to be that. You can’t rush the growth of a plant, nor can you slow it down once it decides to start growing.
And you can’t count on plants any more than you can count on people sometimes. You can do everything right with a pepper plant, but that doesn’t mean you’ll get a bumper crop of peppers. Nor does it mean the Habanero peppers you grow this year will have the same heat as the ones you grew last year. In the garden, as in life, nothing is entirely predictable. You can only do the best you know how and adapt when you have to.
You can’t rush the growth of a plant…
People laugh when I tell them it takes three years or more to get a garden truly doing it’s best. It takes two years just to get most of the rocks out of the soil here in New England. It takes three years to build the soil into something better than dirt. It takes manure and compost and careful attention to soil composition and acidity to really get things cooking.
But people want things right away. They throw chemical fertilizers and herbicides and pesticides at their plants without paying attention to anything but their own need for a quick fix and a quick success. In the process they often make the longterm results worse. Kill off the bees and the earthworms with pesticides and herbicides and destroy the tilth of the soil by relying too much on chemical fertilizers at the expense of organic matter and your yields will decline markedly over time.
…nothing is entirely predictable.
The lessons I learn in the garden I try to apply to every aspect of my life. As a teacher, I quickly learned that every student was as different as every tomato plant. Each one had to be treated as an individual. I learned I had to be just as patient with people as I did with the plants in the garden.
I’m learning those lessons all over again as I work on Walking with Jane and NET cancer. My initial goals were shaped by my anger and frustration and impatience. NET cancer is a disease and my gardening instinct is to move quickly when I see a plant–or a person–in trouble. In terms of finding a cure, we need to do that quickly.
But people want things right away.
But organizations are made up of people–and while it is all right to be impatient about finding a cure, being impatient with people does about as much good as tugging on a plant to try to get it to grow faster: about all you accomplish by doing that is to pull a useful plant out of the ground. Everyone is doing the best they can with the tools they have to work with. You can’t cultivate people by throwing fertilizer at them; nor can you ask someone who is an apple tree to grow a turnip.
And the same thing applies to me. Four years ago this month the idea of Walking with Jane began to coalesce out of conversations with a number of friends and colleagues. It would be another 14 months before we were ready to create Walking with Jane as a non-profit with a clear vision of where we wanted to go and what we wanted to do. And that vision has continued to evolve.
You can’t cultivate people by throwing fertilizer at them…
I used to tell young teachers–and still tell young gardeners–that it takes three to five years to become good at something you do. It takes five to seven years to really master a new skill or fully develop a new idea. By that measure, I am only mid-way to really knowing what it is I am doing.
People like to say that if you’ve been dealing with NET cancer for six months you have the equivalent of a Ph.d in the subject. But that is more a measure of how little we really know about the disease than it is a real understanding of the disease and how it works. The idea may make us feel good–make us feel like experts, but we aren’t. We only become experts when we recognize we have more questions than answers–and that even the answers we have are not very good ones.
…the same thing applies to me.
In the garden or the classroom, I may be an expert at that level. But in the worlds of NET cancer and non-profits, I’m not even sure I’m qualified to scatter a few seeds on the ground in the hope something useful comes up.
New York Times media columnist David Carr, who died suddenly February 13, was a lungnoid according to the NYC medical examiner–and complications from his NET cancer caused his death. The medical examiner also cited heart disease as a contributing factor. The report calls the NET cancer metastatic, which means he could have had tumors in his liver or elsewhere.
Carr was clearly an interesting and complicated man.
Depending on whether or not his tumors were producing serotonin and were in his liver as well as his lungs, that could have had an influence on his heart disease.
Reports have not said, however, whether or not that heart disease was carcinoid heart disease or not. That Carr earlier used cocaine and other drugs may have contributed to his heart disease–or been entirely responsible for it. Without more detail than is in the published reports, we can’t be entirely sure.
…complications from his NET cancer caused his death.
To its credit, the New York Times article quotes the medical examiner’s report in the third paragraph of its coverage, as do some other media reports. However, the vast majority report only that lung cancer was the cause of death, complicated by heart disease.
Most reports immediately jump into a discussion of Carr’s smoking habit either stating directly or implying that his lung cancer was caused by that. Not even the Times‘ report discusses neuroendocrine lung cancer, beyond the quote from the medical examiner.
…we can’t be entirely sure.
Carr had beaten Hodgkins’ lymphoma, an experience he talked about in his 2008 memoire, The Night of the Gun. Most reports included his lymphoma, properly named.
One of the problems all cancer advocates face is the public perception that cancer is a single disease. Even among people who understand there is a difference beyond location between breast cancer and lung cancer or lung cancer and prostate cancer, few understand that there are multiple forms of each–all of which have distinct courses, prognoses, and treatments. In fact, even among NET cancer patients there is not always an understanding of how many different forms carcinoid/NETs can take.
Most reports included his lymphoma, properly named.
The media today are in the business of simplifying the complex to a level most people will understand. This has always been the case to a certain extent–and with cancer in particular, it arguably always has been.
Still, Carr’s death represents, as did Steve Jobs’, a missed opportunity for the media to educate the public about NET cancer. As a reporter, I like to think I would have seen “small cell neuroendocrine lung cancer” and asked how that was different from other lung cancers. It was certainly an idea I tried to instill in the young reporters I trained over the years.
The media today are in the business of simplifying…
Carr was clearly an interesting and complicated man. We will miss him as a media critic and as a keen observer of the world around him. I wonder what he would have written about the reporting on his death. That the media missed a major part of the story by failing to confront the unanswered question–what is neuroendocrine lung cancer?–would surely have irked him.
(Thanks to Ellen DeSilva Thompson for pointing David Carr’s story out to me. My focus has been elsewhere the last few weeks.)
I had my fourth oral surgery in the last ten months on Tuesday. This one put in the post for the permanent implant that will replace the tooth that started this entire bit of lunacy last March. By the end of September, they tell me, this odyssey will be over. Frankly, I can’t wait. I am tired of being tired, tired of not being able to focus entirely on the things that need doing, and tired of not being able to spend the money I want to spend on fighting NET cancer.
…we can better support each other’s efforts.
Carcinoid/NETs patients face that exhaustion all the time. The difference is there is no real end to what they feel. The issues with my mouth are entirely curable. NET cancer is not–at least not yet. The work we do here is aimed at helping to change that. I wish I were better able to do that.
I’ve already written about our awareness goals for this year and the goals for our Marathon Walk team. Those are not, however, the only NET cancer goals we have for the year ahead. While the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute is the focus of much of what we do to support research, there are others engaged in important research as well that we want to increase our support to.
Carcinoid/NETs patients face that exhaustion all the time.
As we noted in last week’s Walking with Jane Carcinoid/NETs News podcast, the Caring for Carcinoid Foundation has launched a three-pronged immunotherapy initiative that will involve funding one drug trial and two pieces of research. I want to do everything we can to help with all three pieces of that initiative. I have seen the results of immunotherapy on other forms of cancer and am entirely impressed with what I can only describe as seemingly miraculous outcomes.
One part of that support is a series of articles I am working on about immunotherapy, how it works and what the results have been with other cancers. I hope those pieces will encourage people to donate to Caring for Carcinoid’s efforts. Certainly, whatever money I personally can afford to send their way will head in that direction. And I will offer whatever other resources I can to that cause–including letter-writing and helping with other fundraisers they put together.
I want to do everything we can to help…
The Carcinoid Cancer Foundation is another organization I want to find more ways to help. Their work on raising awareness, especially about the AdVince and Seneca Valley viruses, but also in more general terms, needs to have greater support. We can have all the cures in the world, but if doctors and lay people don’t know this cancer exists–and know to consider it–those cures will not get to the people who need them.
Equally important are all the smaller foundations working with regional NET cancer centers in the way we do with the program at Dana-Farber. National and global organizations are important, but so are more local operations aimed at supporting more local efforts. Reports last year that at least one NET cancer program was having to consider down-sizing because of money issues make my blood run cold. We need to help every NET cancer center get the funding it needs to keep doing the research and treating patients.
We can have all the cures in the world…
Ideally, I would like to see every National Cancer Institute Cancer Center have a fully funded NET cancer program. Patients should not have to travel 500 miles or more to find a fully qualified interdisciplinary team. That is too often the case. But when we do not have enough experienced doctors and we do not have the ability to fund that many centers, we have to make do with what we have–at least for now. Making sure that the centers we do have get the funding they need to do what they need to do is the necessary first step to getting the second part of that equation solved.
To that end, I’ve already recruited people at the Boston Marathon Jimmy Fund Walk to talk with groups or individuals who want to set up something similar in their area. And I am certainly willing to talk to anyone at any time about how we have done what we have done within the Jimmy Fund Walk to aid DFCI’s program.
Patients should not have to travel 500 miles or more…
Further, I am willing to talk to anyone about how we set up Walking with Jane and any of the things we do. We all need to help each other race money and raise awareness in any way that we can. To that end, I propose we create a Carcinoid/NETs alliance aimed at bringing all of the organizations raising money and awareness for this disease so that we can all learn from each other and share ideas. And rather than gathering for a conference, I suggest we use Skype, Facebook, and other social media for our interactions. That way, we can “meet” with greater frequency and provide each other with greater support.
I in no way intend for this idea to replace the NET Alliance or NET Cancer Day. Those groups have their own work to do. But I see a need for more grassroots level communication and support than we have now. Those of us at the lower and more regional end of the spectrum need to communicate better with each other about what we are trying to do and how we can better support each other’s efforts.
…provide each other with greater support.
Last fall, I published long series of articles about marketing NET cancer. These first four pieces on our goals for 2014 are part of the plan for how we implement the ideas put forward in those articles. In the final parts of this series, we’ll look at our goals for our Relay for Life team and some of the paperwork involved in making Walking with Jane fully functional that still needs to be done.
The hardest part of this job is asking people for money. I am not very good at it and am embarrassed by the need to do it every time. The second hardest thing I do is ask others to help with raising money. I know most people hate doing it. It makes me feel like a panhandler every time I ask people for money–and like Fagan every time I ask others to do so.
…we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel.
As I said in my last post, though, killing carcinoid/NETs requires we find large amounts of money–and that we find it every year. Further, what we have raised so far comes nowhere near the amount we really need to make a cure a reality in the relatively near term. There are people dying of this disease every day out there. I really want that to stop.
Last year, our Jimmy Fund Walk team fielded a team of 48 walkers who raised a combined total of nearly $70,000. As good as that was, we need to do better. As I write this, the goal listed on our site for 2015 is $80,000. It is a safe number, I think. I set it in November before I had a series of meeting with members of the Walk staff and people at the Program for Neuroendocrine and Carcinoid Tumors. Now, what I really hope we can do this year, is break $100,000.
…killing carcinoid/NETs requires we find large amounts of money…
Over the next few months I will meet with members of two of the higher performing teams in the Walk and in the Pan-Mass Challenge. I intend to pick their brains about how they have done what they have done and try to apply those lessons to our own team.
My hope is we will also do a better job of supporting the fundraising efforts of our team members. I have more than a little experience, at this point, in marketing events. It’s time I shared that knowledge more broadly in support of events run by other team members. If I’ve learned one thing over the past four years, it is that I cannot do everything all the time.
…what I really hope we can do this year, is break $100,000.
Jenaleigh Landers, one of our team captains, got help from some of her late father’s friends last year who wanted to put on a golf tournament in his memory. The Hank Landers Memorial Golf Tournament in northeastern Massachusetts raised about $6000 last year. And it has significant growth potential, given what Jena and her friends learned from last year’s efforts. Their success has inspired me to consider trying two new events–a golf tournament and a mini golf tournament–in the Greater Fall River-New Bedford area this summer.
But we also need to help people use their own creativity. One of our team members last year raised a considerable amount of money through the sale of small zebra themed sculptures made from polymer clay. She also made stitch markers for knitting projects and a range of other items. In total, between those efforts and others, she raised nearly $7000 for the cause.
Their success has inspired me…
My letter-writing efforts have generated as much as $6000 a year. Each year, I offer that letter to others on the team to use with people on their Christmas card lists. Very few people use it. But if only ten people did so, the results for their fundraising efforts–and for our team–could be significant.
Each year, I also seek sponsors for our team t-shirts. I tell team members the prices and provide a letter for businesses they may know. I routinely raise $1000 myself from that effort. But there is room on the shirt for another $1200-$1800 worth of sponsorships.
…we also need to help people use their own creativity.
Every person has a talent of some kind that could produce a significant sum of money for our Walk team efforts. We need to help people do that. Some of those things require more effort than others. I’ve heard people on other teams talk about yard sales, product parties, and softball tournaments. It is all a question of what people are willing to take on.
My advantage is that I am retired and have more time than many others do to undertake larger and more complex projects. But my experience is that often the easiest projects raise more money than the more complex ones do.
…I also seek sponsors for our team t-shirts.
A dinner, for example, requires lots of people and lots of effort spread out over weeks. My letter-writing campaign, which goes out to 400+ recipients, takes a couple of afternoons once the letter is written–and a couple of hours if I have help stuffing the envelopes. The dinner might gross $2000 and net about half that. The letters generally gross $3000 and net about $2400 once the stamps and envelopes are paid for.
The first task in reaching that $100,000 Boston Marathon Jimmy Fund Walk goal is simply to help those already committed to the team to raise more money. The second task is to recruit more walkers. My goal is to build the team to 80 this year. That is a more complicated task.
…often the easiest projects raise more money…
But we will have more support from both the Walk team and the Program in Neuroendocrine and Carcinoid Tumors than we did a year ago–not that we didn’t have their support before. For example, the Program has just launched a newsletter for NET cancer patients at the Dana-Farber Cancer Institute. Our NETwalkers Alliance team and its activities will get regular coverage in that publication. It will not do any active recruiting for the team–there are ethical issues involved in that–but just the knowledge that a team exists should bring more people to our door.
We will also try to encourage people on both the clinical and research staffs to become more involved with the team. We will try to set up tours of the DFCI facility and labs for team members and perspective team members through the efforts of the Jimmy Fund Walk team. And we will get local media involved wherever we have team members through interviews and press releases. In addition, we have launched a NETwalkers Alliance Facebook page where both team members and the general public will be able to learn about our efforts.
My goal is to build the team to 80 this year.
Finally, this week, we will launch a weekly Walking with Jane NET Cancer News podcast on our YouTube channel. That program will have regular updates on NETwalkers Alliance team activities to support everything we are doing, in addition to providing news about NET cancer research going on at DFCI and elsewhere, as well as what other groups are doing to raise money for NET cancer research.
(Editor’s Note: While the Boston Marathon Jimmy Fund Walk is one of our major initiatives in our efforts to raise money for research into NET cancer in the coming year, it is not the only effort we have made a commitment to, even at Dana-Farber. In the next part of this series on goals and planning for 2015, we’ll look at the other NET cancer specific money efforts on our agenda.)
I had a very different plan in mind when I got up yesterday morning. But that was before several sources reported the possibility that ESPN’s Stuart Scott’s cancer was carcinoid/NETs. My response to that was to shelve the piece on goals for Walking with Jane in 2015 I was working on and pursue the more timely story that seemed to be evolving. For a time, it appeared reporting on Scott’s cancer was following the all-to-familiar pattern we experienced after Steve Job’s death.
…hard work is the road to longterm success…
By the end of the day, it seemed likely those early reports were incorrect. Rather, it now appears Scott had a form of cancer even more rare than NETs. If NET cancer is a zebra, the best explanation of the cancer Scott appears to have had is that it is a polka-dotted unicorn. Given what I know of doctors’ responses to NET cancer, I can hardly imagine how difficult Scott’s interaction with his doctors may have been, right up to the moment of his emergency surgery in 2007.
The entire experience underlined for me how important it is that we raise awareness for all the zebra diseases out there. Last year, thanks to the ice bucket challenge, Lou Gehrig’s Disease landed on the map with a bigger splash than even when he made his announcement that he had ALS. If nothing else, people have now heard that name–and one hopes many more know the symptoms of the disease than did so a year ago.
…a polka-dotted unicorn.
Every rare disease needs dedicated advocates working to raise awareness of the disease among both medical personnel and lay people. We need to find ways to get primary care doctors to take the possibility that a patient may have a zebra more seriously than many do. Almost daily, I encounter patients whose doctors poo-poo the idea that they may be looking at a case of NET cancer. They sometimes refuse to test for it, even in the face of considerable evidence that it may be the culprit in a patient’s suffering.
I don’t blame them for their ignorance or their actions. Primary care doctors face an overwhelming task. There are tens of thousands of diseases with hundreds of thousands of symptoms, many of which overlap with several different diseases. No human being can truly be a master of every disease. Specialists have it easy by comparison.
Every rare disease needs dedicated advocates…
But even specialists face significant problems. There are thousands of types of cancer. They can become expert in a handful and have significant knowledge about a number more. But we become most expert at what we most often deal with. If you see one case of NET cancer over the course of a career, it is unrealistic to think you are going to spend the time becoming an expert in it. You know lung cancer, breast cancer, prostate cancer, colon cancer, and pancreatic cancer well because you see them most often.
Last year, with Jennifer Chan and Matt Kulke, I did two shows on NET cancer on Doctor Radio on Sirius XM. We hoped to reach doctors and patients with more knowledge about the disease and its treatment. My hope is that we will return to that program again this year.
There are tens of thousands of diseases…
Radio could give us the ability to reach more folks than we do now. I know many of you have contacts in that world. Some of you have even made appearances on radio broadcasts to talk about NET cancer. I want to encourage regional foundations to exploit those contacts. We have several doctors who have expressed a willingness to do things similar to what we have done with Doctor Radio. And I am willing to do as many radio appearances as people want me to do.
But we need to do more. Starting this month–I hope this week–Walking with Jane will launch a 5-10 minute audio podcast once a week on our YouTube Channel. That podcast will touch briefly on the latest research on NET cancer and events scheduled by the various NET cancer foundations and patient groups. The program will not pretend to be more than a headline service, though we will find a way to provide links to more in-depth coverage of those stories we cover.
Radio could give us the ability to reach more folks…
In addition, we will launch a regular video podcast once a month that will include a five-minute news summary similar to the audio podcast, as well as more detailed interviews with doctors, researchers, foundations and patients. We hope the video podcast will air once a month and run 20 minutes or so.
Much of what I write here has an editorial flavor to it. My hope is to provide more hard news in this space about NET cancer in the coming year. I also need to recruit patients and caregivers to help provide more of the content here. If you are a patient interested in sharing your experiences with your treatment here on a regular basis, I need to hear from you. If you are a caregiver–professional or layperson–I’d like to provide space for those stories here as well–and I want to hear from you, as well.
The program will not pretend to be more than a headline service…
I have come to the realization that I am trying to do way too much on my own–especially as I try to expand what we are doing and offering. Writing for this website is one of the things you can do to help.
Help on that score will free me up to undertake a new task. I have begun scheduling speaking engagements for the coming year. I am not pretending to be a medical expert in these speeches. I am telling Jane’s story and relating my personal experiences as a caregiver. It is a form of outreach I have been uncomfortable doing to this point. It is only in the last few months that I have been able to talk about what happened with Jane in public without breaking down.
Writing for this website is one of the things you can do to help.
But sharing her story is something that needs to be done. And I won’t just be doing it with public speaking. In December, I began composing The Widower’s Tale, the story of what Jane and I went through with her disease–and what I have gone through since her death. Eventually, my plan is to publish that story as a book. The proceeds from that will go to NET cancer research and to support an online grief group that has helped–and continues to help–me get through the grief process–and needs the money to keep doing their good work.
Last year, this website had nearly 17,000 visits. The goal for next year is to increase that number by 7,000. Every person who visits this site arrives looking for information to help them deal with their NET cancer or the NET cancer of someone they love and care for. Our job is to provide both information and moral and emotional support for them when they need it.
…sharing her story is something that needs to be done.
Last year, we nearly doubled the number of people coming here in our best previous year–and nearly tripled the number of visits made in 2013. There is no magic in that improvement. We are giving people what they need when they need it. But we need to do a better job and I will need your help to do that.
I am not suggesting anything fancy here. While I would be delighted with an ice bucket challenge event of our own, I know lightning rarely strikes in the same place–or in the same way–twice. We cannot sit back and wait for a lucky break–though we do need to be prepared to take advantage of it if it occurs.
We are giving people what they need…
My experience tells me that hard work is the road to longterm success in any endeavor. There is nothing glamorous about it. It amounts to getting up every morning and doing the work that needs to be done. I hope some of you will come help me do some of the lifting and toting that needs to be done this year.
Editor’s note: This is Part 1 of a series on our goals and plans to reach those goals in 2015. Part 2 will talk about financial goals.
When I was five, my Grandfather sat me down on the back porch of his home in the Ben Avon borough of Pittsburgh and explained the process of setting goals and planning to me. He put it in a child’s terms so I could grasp what a powerful idea it was. Since then, I’ve never been without a set of goals and a set of plans for how to achieve those goals.
‘God helps those who first help themselves.’
That concept got a booster shot when I started working for Sears my last year of high school. It was, then, an organization that took great pride in planning. It was what set them apart from other stores and was a major reason for their success. The day they abandoned their commitment to setting goals and planning is the day they began their fall from the pinnacle of the retail world.
On the plane back from Seattle on January 1, 2011, I began thinking about the organization that would eventually become Walking with Jane. My primary goal was to support research into–and raise awareness of–carcinoid/NETs. Jane died because too few doctors had ever heard of this form of cancer. Jane died because we were not spending enough money to fund much in the way of research over the 40 years since the government had decided it was not cost-effective to spend money on it.
…I’ve never been without a set of goals…
But having a goal or two means nothing without a plan for reaching those goals, so I spent that flight thinking about ways an English teacher with minimal medical background could have an impact. I’d written a pamphlet about the disease on my way to Seattle. Now I needed to figure out how to market that–and how to get it into the hands of people who needed the information that pamphlet contained. I needed to figure out how to raise significant amounts of money to fund research. And I needed to know a lot more about carcinoid/NETs and the fight against it than I did.
Nearly everything about that initial plan came out of my own ignorance and inexperience. In some respects, that was a bad thing. But in others it was a good thing: I didn’t know what was supposed to be impossible; I knew nothing about the politics of cancer research; I knew none of the things that might have caused me to throw up my hands and walk away in despair. I saw only a set of problems that needed to be solved.
…I needed to know a lot more about carcinoid/NETs…
I took most of the month of December off this past year from my work on carcinoid/NETs. I was physically, mentally and emotionally exhausted. It was not just the effort against carcinoid/NETs. I lost my father to a stroke in August. I lost one of my oldest friends to breast cancer in January. I lost a niece to a long illness in August. Friends lost mothers, fathers, wives, husbands, and children. Friends and family members were diagnosed with a plethora of serious, sometimes fatal, diseases. My father-in-law was diagnosed in November with advanced prostate cancer that has spread to his bones.
There is a concept in chess called “the overburdened piece.” It is a piece that supports so many other pieces and positions that it becomes the center of attention for both players–often with fatal consequences for the game of the player that piece belongs to. There were simply too many demands on my mental and emotional resources by the end of the year–and something had to give.
I didn’t know what was supposed to be impossible…
I compounded those issues by beginning to write a book on my personal grief process. That meant going back to the beginning and reliving the last months of Jane’s life. I thought I was ready for that. And I am. But the process is proving far more difficult than I anticipated. What I thought I could create a draft of in a month is less than a quarter completed. The writing has been good for me emotionally but has swallowed great chunks of time and psychic energy.
In addition, I decided not to go to Seattle for Christmas this year, given my father-in-law’s fragile health. That meant spending Christmas for the first time since the year before Jane’s death in the house she and I built together 20 years ago. I was ready to reclaim that part of my life, as well–but again, there was a steep emotional price. I woke up in our bed on Christmas morning, had our traditional Christmas morning breakfast, and prepared to welcome her father and sister for Christmas dinner.
I thought I was ready for that.
Four years and 22 days after Jane’s death, carcinoid/NETs still plagues more than 110,000 people in the US who know they have it–and God only knows how many more who have it and don’t know the name of the cancer that is killing them. We have made progress on many fronts: We know more about the disease than we did on the day Jane was diagnosed; we have new drugs approved for use against it; we have more drugs and treatments in trials; and ideas for new treatments waiting in the wings for funding.
I spent last night thinking about what the goals need to be for the year ahead. I thought about how to reach those goals and what will need to happen for us to make those plans work. Over the next few days, I’ll unveil those plans and ask for your help in making them happen–not just with your money but with your time and effort.
I was ready to reclaim that part of my life…
I put out a couple of short posts on Twitter and Facebook the last two days. The first was a wish that this would be the year we find a real cure for NET cancer. The second was to remind all of us that it takes more than prayer to make things happen in this world–it takes our sustained effort.
As my grandfather used to remind me with some frequency, “God helps those who first help themselves.”
