One of the things I said I would do last winter when I was writing about goals and planning was I would share the letters I write for fundraising with the NET cancer community in the hope those letters would help other groups besides Walking with Jane raise money to help their regional NET cancer programs.
What follows is my summer fundraising letter. By modifying one paragraph and the link in the last paragraph, you can use it with your NET cancer fundraising efforts. You have my permission to do so, as long as you use it for that purpose. I have avoided using headers and the like to make the job of using it as easy as possible.
The Letter
Dear friend,
Jane’s death haunts me. I still wake up in the middle of the night, reaching for her and finding nothing there but a pillow. I still hear the words her doctor said the day she was diagnosed. I still hear the hospitalist telling me there was nothing more to be done.
I still remember telling her we were letting her die because there was nothing left to try
Ten thousand people were diagnosed with NET cancer in the US the year my wife was diagnosed with that incurable and nasty form of the disease. Last year, 15,000 people got the same diagnosis.
We don’t know why the numbers have shot up so dramatically in the last five years. Part of it may be more doctors are aware of the disease than was the case then. Part of it may be the new methods we have to detect it. Or maybe something else is going on. We just don’t know.
And while we have new treatments coming online to ease the symptoms of this rare form of cancer, we are not significantly closer to a cure than we were five years ago. Every new thing we learn about it seems to further complicate the situation. I increasingly appreciate the adage among NET cancer doctors: “When you’ve seen one case of carcinoid/NETs you’ve seen one case.” Too often, what we learn from one patient does not translate well to another.
But neither I nor the doctors and researchers are giving up. There are too many patients—120,000 of them—who desperately need a cure. They want to see their children grow up, see them graduate from high school, go to college, get married and present them with grandchildren. They want to grow old with their spouses and celebrate all those anniversaries Jane and I didn’t get.
So, once again this year, I will take on the 26.2 miles of the BAA Boston Marathon course on September 27 as part of the Jimmy Fund Walk. As always, every penny I raise will go to carcinoid/NETs research at the Dana-Farber Cancer Institute.
I’m not a scientist. I’m not a doctor. I’m not a researcher. I’m a man who lost his wife—a man who doesn’t want others to go through what my wife went through—the insomnia, the flushing, the constant, endless diarrhea that is the lot of too many NET cancer patients. And I don’t want anyone to go through what I went through then—or what I go through now.
We need your help. Please give what you can. Help us kill NET cancer before it kills someone you love.
Sincerely,
Harry Proudfoot
Chairman, Walking with Jane
p.s. Even if you can’t give, please share this with people you know.
Here we are, entering the last week of July. The Marathon Walk is two months from tomorrow and my personal training is going well, but slowly. I’m trying to make sure I don’t make the mistake I made last year of training too hard too early. My right knee, which I injured last year, feels stronger every day. I’m climbing lots of stairs each day and it seems to like that.
Patients are counting on us.
As of today, we have 16 Walkers officially signed up and have raised $15,791. That’s good for seventh place among all Walk teams, but about $6000 behind sixth place.
Register now
We have a lot to do in the coming weeks if we are going to reach our goals of 80 Walkers and $80,000. If you are planning tho Walk with us but have not yet signed up, please do so today here. Remember, even if you can’t be physically here on September 27, you can be a virtual walker.
… we have 16 Walkers officially signed up…
The Hank Landers Memorial Golf Tournament next Saturday will certainly help our fundraising numbers. Jenaleigh Landers raised a bundle with that event last year and it sounds like it will be as successful this year. I’ll be there to demonstrate conclusively that I am among the worst golfers in the known universe. Registration for that event has closed, but we have two other major efforts coming up in August.
Walking with Jane will host the First Annual Walking with Jane Miniature Golf Tournament at the Caddy Shack in North Dartmouth, MA on August 27 from 4 p.m. to 9:30 p.m. All proceeds raised will go to NETwalkers Alliance. We will split that money up among team members who work on that event. Entry fees are $10 for adults and $6 for children under 12. You can register at here or by sending a check to Walking with Jane at P.O. Box 9721, Fall River, MA 02720 for the amount necessary to cover the fees for those in your group.
Bits and pieces
I’ll be working on finding sponsors for both the miniature golf tournament and our Walk t-shirts over the next few weeks, as well as drafting my summer fundraising letter.
I am a real neophyte when it comes to smart phones. For those of you who are not, the Walk has a fundraising App you may find useful. You can learn about it and download it here.
You can view and share the Walk Heroes online, including our own Jillian Emmons. You can also use this to help with your online fundraising letters and notes. And if you have fundraisers you’d like me to highlight–or need help with an issue, feel free to contact me with a comment here or a note to walkingwithjane@gmail.com.
Final thoughts
Each of us has a reason to want NET cancer dead. Together, we are helping create a powerful research team at DFCI with the resources to do that job. But we need all the help we can get to make that happen.
…help with your online fundraising letters and notes.
Please join us if you can–and donate if you can’t. Please recruit others to the cause. Patients are counting on us.
If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what’s your excuse for not joining us?
As I write this, the Jimmy Fund Marathon Walk is 90 days away. So far, we have 16 registered walkers and have raised $12,500. That’s a long way from the $80,000 public goal we’ve set for this year—and an even further distance from the $100,000 goal several of us have talked about.
…every month needs to have plenty of effort…
My own fundraising is still lagging a bit behind last year. I’d hoped to be closing in on $10,000 by this point. But things are picking up, as they generally do at this point in the year.
A big donation
Robert Phelan and I presented a check for $3000 from SafeCo Insurance to the NET cancer program at DFCI earlier this month. That is part of the total above.
…we have 16 registered walkers…
You never know who will do what until you ask. Just talking to my dentist and his assistant may have netted us another four walkers from that office.
Raising awareness–and money
Last week was the Greater Fall River Relay for Life. While it has no connection to the Walk, it is one of my training milestones each year. And this year we tried to raise the level of awareness about NET cancer to a higher level by creating a massive zebra herd made of luminaria bags. Total, we created about 1200 bags, one for every ten people who died of NET cancer last year.
You never know who will do what until you ask.
We raised a total, so far, of $7776 for the American Cancer Society through the Relay, including close to $1400 at the event from sales of buttons and our clam cake and chowder concession. We managed to keep people on the track for just about every minute of the 18 hours of the event. Two of us walked nearly non-stop from about 11 a.m. until 6:30 a.m. on the night shift. Overall, the Relay has raised more than $210,000 for patient support and cancer research.
On the docket
We have four big fundraising events currently moving forward. Jillian Emmons, our Walk Hero, has done an online Norwex sales party, with her cut of the proceeds going to her Walk. Her friends, some of whom walk with our team and some of whom don’t, have organized similar parties to raise money either to support Jillian’s Walk or their own. If you’d like details, drop me an email and I’ll forward your name to Jillian. Or you can go here and drop her a note yourself.
…a massive zebra herd made of luminaria bags.
Jenaleigh Landers has set August 1 as the date for the Hank Landers Memorial Golf Tournament. Hank was her Dad, who died of NET cancer two years ago this month. The tournament will take place at the Bradford Country Club in Haverhill, MA. Tee time is 1 p.m. You can learn more about the tournament at https://www.facebook.com/events/980650735291973/
Players and sponsors
August 27 is the Walking with Jane Miniature Golf Open at Caddy Shack in Dartmouth, MA. I’ll put up a Facebook event page for this later in the week. Tournament entry fees are $10 for adults and $6 for children 12 and under. Caddy Shack is donating both the use of the course and whatever non-tournament players spend with them during the time of the tournament.
We have four big fundraising events currently…
If you know of a business that would like to sponsor our official NETwalkers Alliance team t-shirts for the day of the Marathon Walk, those are available again this year. Bronze sponsors pay $100 to get their business’s name on the back of the shirt. For $250 they get their business logo on the back of the shirt. For $500 or more, they get their logo on the front of the shirt. We already have three for the front of the shirt, one of which is a holdover from last year.
Bits and pieces
I must have all sponsor materials by August 15 so that I can get the shirt design finished and to the printer in time to get the shirts out before Walk Day.
If you know of a business…
Finally, a generous donor has offered to match all donations made to my Marathon Walk through June 30 at midnight. There is still about $400 left in that matching fund, so if you have not yet donated, this would be a good time to do so.
June has been a hectic month–and July is looking pretty busy as well. If we are going to kill this thing, every month needs to have plenty of effort put into it, whether by researchers or those of us trying to fund that research.
I wanted to call this piece “Four-and-a-half years,” which is the same as fifty-four months in terms of time, but not, somehow, in meaning. With a child, we draw the line around 48 months. With death–at least with Jane’s–it appears to be different.
Jane’s life was an unequivocal success.
My father died almost a year ago. My mother died 10 months before Jane did. I lost a good friend to triple negative breast cancer just over a year ago. I have no problem talking about their deaths in terms of years. Of course I didn’t spend the last month of their lives in a hospital room holding their hands, either.
A month of deaths
The last month has been a difficult one in my corner of the carcinoid/NETs community. Half-a-dozen patients I’ve become close to–two of them significant figures in creating foundations and support groups–have killed their NET cancer the same way Jane did: by dying and taking it with them. I’ve done what little I can for their spouses and loved ones. It never seems as though it is enough.
…it appears to be different.
Nothing I do ever seems like enough. Friends tell me I can only do what I can do–that one person can only do so much. And intellectually, I can agree with them. But my heart can’t accept that. I’ve seen too much pain and too much suffering and been unable to do much to alleviate either one. My Buddhist training tells me I should take a very different lesson from that than I do. I am not a very good Buddhist.
What I wake up to
My Taoist training insists there is little constructive I can do–that waiting is. I am not a very good Taoist. The Christian part of me talks about all of this being part of the divine plan. I am a lousy Christian. If killing people with this hideous form of cancer is divinely inspired, I want no part of that divinity.
It never seems as though it is enough.
There is a sign on the wall opposite my bed. It is placed so it is the first thing I see when I wake up in the morning. It says, “It is never too late to be what you might have been.” It reminds me that the failures of the day before are no reason to give up on the work of today. It refuses to let me set down the work I have adopted as my own. It refuses to let me stop striving to embody what I believe.
A month for change
I accept that suffering exists in the world–but that does not mean I don’t try to ease it for others where and when I can. I accept that there are things I may not be able to change, but I try to change them anyway because I cannot know what is impossible until I try. Divinity can want what it wants; I can only do what my heart tells me is right. I am more concerned with humanity than I am with the needs or desires of any god.
It is never too late…
People tell me constantly how pleased Jane must be with what I am doing. I do none of what I do to make her happy. Jane is far beyond my ability to make happy or sad now. It is not that I love her less than I did when she was alive, but our work was for–and with–the living–and my work still is.
A month of frustration
I feel frustrated this month. The anniversary of Jane’s death was much more difficult this month than last. All the deaths of the last month have taken me back to Jane’s last days over and over again.
I am more concerned with humanity…
Financially, Walking with Jane is running behind last year’s numbers. In terms of raising awareness about NET cancer, our efforts seem stalled because I can’t figure out how to extend our reach. The goals I set at the beginning of the year seem to be sliding out of reach. I’m having trouble getting pieces of writing to work–and my book on grief is the worst of it. I feel mentally constipated and my usual laxatives are not working very well. Even the garden is struggling.
Judging a life
But I am too stubborn–or too stupid–to quit. It doesn’t matter which it is. Last night I had a series of dreams about individuals solving problems that improved human lives. Most of them were nameless folks who saw something that needed to be done and did it. They were frustrated at times, too. But they kept working at whatever it was. Sometimes they solved the problem. Sometimes, they created the groundwork others built on. Sometimes, they failed completely.
…our efforts seem stalled…
At the end of Oedipus, Rex, one of the characters says we should never count a person’s life as happy or sad until we have seen the end of it. Equally, we should never consider a person’s life as successful or not until we have the whole body of that life to look at. Jane’s life was an unequivocal success. But my life is not over and no one should judge it one way or the other until it is–including me.
Jane still lives in my heart. No month goes by that is not filled with memories of our life together. But memory cannot get in the path of progress–or at least it cannot be allowed to prevent progress.
We had our long-delayed Walking with Jane Board of Directors meeting yesterday. We normally meet the second Saturday in January but I had oral surgery scheduled for two days before that date this year, so we moved it later in the month. Then it started to snow. And the further we moved into the spring, the more scheduling conflicts erupted.
My focus needs to reflect that reality.
I understand now why our lawyer advised limiting the board to three people. The problem was I wanted a wide range of expertise and opinion in that group. We ended up with six trustees plus me as chairman. And yesterday, we had serious discussions about the need to expand the board to include people from outside the immediate area. For now, we have put that idea on hold. But in light of some other things we decided thereafter, it is an idea I expect we will return to very soon.
Decisions made
The formal meeting lasted over three hours and included decisions on a mini golf tournament tentatively scheduled for late August, a regular fundraising dinner schedule, a comedy night, ideas for a new public service announcement campaign, acceptance of an offer from Amazon.com to donate a percentage of some sales to Walking with Jane, and a revised corporate sponsorship program.
Then it started to snow.
I’ll write more about each of those things as we get them set up. But the lion’s share of our time–and the main subject of this post–focussed on our goals and our vision for where we want Walking with Jane to go over the next few years. The more we talked the more clear it became that we all felt we needed to refocus our energies on our original reason for starting Walking with Jane.
A brief history
If you’ve followed Walking with Jane for any length of time, you know Jane’s story and you know why, eventually, we set up Walking with Jane. In brief, when Jane was diagnosed with NET cancer in August of 2010, her doctor had never heard of it. When I went online to look for information, there was very little to be found–and much of what I did find was written in doctor-speak. Her first oncologist had heard of it, but never seen a case. She sent us to Jen Chan at the Dana-Farber Cancer Institute.
…we all felt we needed to refocus our energies…
The week after Jane died, one of her doctors called to tell me Dana-Farber was forming a program aimed specifically at carcinoid/NETs. They asked me to be a part of what they were doing–and I agreed. But I have never been one to put all my eggs in one basket–and our friends agreed with me. We wanted to do more.
Past as prelude
So we set up Walking with Jane–first as a Relay for Life team and later as a non-profit. Our goals, from the start, were three in number: first, to raise awareness about carcinoid and NET cancers among both medical professionals and the general public; second, to increase funding for research into the disease and possible cures; and, finally, to provide scholarships for students entering the medical field in the hope of creating doctors, nurses, and researchers who would help fight cancer and other diseases–and for students entering science education to carry on Jane’s work in the classroom.
…I have never been one to put all my eggs in one basket…
To date, we have paid out $16,000 in scholarships and directly raised or directly generated nearly $200,000 for research and awareness. Some of that money has helped seed ground that raised substantially more than that–or so I’ve been told. We’ve done two social media marathons on carcinoid and NET cancer, appeared twice on Doctor Radio’s cancer program, created several PSAs, and done everything we could to change the carcinoid/NETs environment.
The dark side
Frankly, from my perspective, it hasn’t been enough. We haven’t reached enough people or raised enough money–or created an environment in which other groups have been able to raise enough money or reach enough people. Our board disagreed with me somewhat on that issue yesterday. I live too closely to things to see just how far we have come as a community or how much has changed.
So we set up Walking with Jane…
I see the ongoing ignorance of the mainstream medical community. I see the ongoing lack of funding for research–how hard every NET cancer program has to work to find the research dollars they each need to make a difference. I see our ongoing failure to reach the general public in a meaningful way.
The bright side
But there are rays of hope. Today, we spend four times as much on NET cancer research as we did in 2010 when Jane died. There are 50 papers on carcinoid/NETs at this year’s ASCO conference. We’ve had two new drugs receive FDA approval and have a significant number of potential new treatments in the pipeline, including immunotherapy. PRRT is undergoing trials in the US and is increasingly widely available within the strictures of the trial process.
…it hasn’t been enough.
I won’t pretend Walking with Jane is responsible for any of that happening. Most of it was in the pipeline long before we knew what Jane had. I won’t pretend Walking with Jane will have much responsibility for what happens in the future. We are still too small to have a very large–or even significant–voice in what happens next in research and treatment. I do know we will continue with what we started: trying to make a difference in the lives of others with carcinoid/NETs–and I hope we will get better at that with each passing day.
Eyes on the prize
To do that, though, we need to keep our eyes on our original purposes. We are not trying to provide money for research into the more common forms of cancer. There are plenty of organizations doing that job. We aren’t trying to provide transportation or lodging for people who have to travel long distances–though God knows NET cancer patients have greater need of those kinds of support services than most.
But there are rays of hope.
Right now, the only possibility of curing carcinoid/NETs is early detection followed by prompt surgery. Early detection can only happen through broader awareness in both the medical and general populations about this form of cancer. And we need to continue searching for ways to detect the disease reliably–and early.
Grim realities
But most tumors will continue to remain undetected until they have spread. For those patients, we have no cure–only a handful of palliative treatments that can prolong life and decrease suffering in some patients. We need to continue supporting research into both palliative treatments and potential cures. We need to support the basic research into the disease from which those treatments will come.
…we need to continue searching for ways to detect the disease reliably–and early.
And we need to continue to support the education of future scientists, doctors and nurses–and the educators who will help create those researchers.
I wish we could do more than that–and we will continue to work to educate patients and their doctors about not only symptoms but also potential tests and treatments–but, as Walking with Jane’s board pointed out to me yesterday, most of the time I will still have to function as an army of one when it comes to this organization. Our focus needs to reflect that reality.
While I am often alone –often function as an army of one–I know I am not really alone in my passion to end NET cancer. My job is to bring people together so that, truly, no one fights alone. I have the luxury of time that few others have–and that means much of the organizing and writing that go into Walking with Jane falls on my shoulders.
I’ve had an insane week that has put me so far behind on a number of things I may never catch up.
First, my apologies: I have a piece in hand for liver radio-embolization. I’d promised the writer to get it back to him with my edits close to two weeks ago. I just haven’t gotten there. The piece is coming–just not as soon as I’d like.
…my bottom line.
There is also a series on immunotherapy coming. I’ve, again, been too busy to write it and get it off to the doctor who has agreed to read it and make sure I don’t screw anything up. It is coming–just not quite yet. I want to be sure I get it right.
Life intervenes
Part of the problem is my father-in-law was admitted to the hospital again last weekend, one day before he was supposed to come home from rehab. He is doing better and is back in rehab as I write this, but it’s been a scary few days–and I’m not sure he is close to being out of the woods.
I want to be sure I get it right.
And then there’s the other fly in the ointment: I have been at work on our first long Form 990 EZ filing for Walking with Jane, Inc. For those of you not involved with running a foundation, we are required to file a form with the IRS every year in order to keep our tax exempt status. That is Form 990.
Living with the Form
That process, at the federal level, is insanely simple, until you raise more than $50,000 in a year. You file a postcard online that requires little more than your corporate ID number and a statement that you did not make more than $50,000. It takes about five minutes.
…it’s been a scary few days…
Unfortunately, the Commonwealth of Massachusetts requires you file one of the longer 990 forms if you go over $5,000, as well as a form of its own. That is significantly more complicated–and significantly more complicated than I anticipated. I now understand why our lawyer suggested we might want to think about an accountant.
Requirement makes sense
I understand why the Commonwealth requires the more complicated form. In fact, I wondered why the IRS didn’t require it as well. The detailed questions the form asks–and the records it requires one keep–make it pretty difficult for anyone short of a criminal genius to engage in fraud or embezzlement–at least I would think so.
That is significantly more complicated…
When time allows, I will post those completed forms on our About Us section of this website. I think it’s important that you see what kind of money comes through our door at this point–and where that money goes. It isn’t a huge amount–about $21,000 last year, if memory serves–actually passed through our hands.
I know it happens because I see on our stats page here that people clicked on a “giving” link to those organizations–but once you’ve gone to their site to make a donation, there is no paper trail here about what you gave them. And they have no idea that you arrived there from out site and made a particular donation–unless they have a better stats section than we do.
The point of the exercise
I can say with certainty that our Walking with Jane, Hank and Anne Jimmy Fund Walk team generated just under $67,000 for NET cancer research at DFCI in 2014, for example. I can also say, with certainty, that less than 20 percent of that money was ever held by Walking with Jane, Inc. I can also say with certainty that another $15,000 was donated last year directly to the Walking with Jane Fund at DFCI that I set up in the year after Jane’s death–and that none of that money ever was a part of Walking with Jane, Inc., for all that I know Walking with Jane inspired that amount to be donated.
I know it happens…
And it doesn’t bother me. When I started on this journey my only interest was in finding a way to cure carcinoid/NETs. Part of that is about raising awareness: you really can’t cure something if you don’t know it exists. Part of that is about research–and you can’t do research without a steady flow of money. If people want to give that money to Walking with Jane because they don’t want to get on someone else’s mailing list, that’s fine with me. If they want to give that money to some other group engaged in fighting carcinoid/NETs because of something they read here or hear me say somewhere, that’s fine with me, too.
The ultimate goal
So long as we find a cure, so long as this disease goes into the dustbin of history with small pox and polio, so long as we find ways to let people take the walks Jane and I will never get to take, I don’t care who gets the money or the credit. I just want this disease dead before it kills someone you love.
…that’s fine with me.
And that’s my bottom line.
For a neophyte, filling out the Federal Form 990 is an obstacle course under the best of circumstances. These have not been the best of circumstances.
I’ll start this month’s update with some exciting news: Our team will have its own Walk Hero this year.
Jillian raised almost $7000 last year.
Jillian Emmons, who serves as one of our NETwalkers Alliance co-captains, has been named as a Walk Hero–and as our team’s official Walk Hero partner. What that last bit means I am not 100 percent clear on, but given the small number of Walk Heroes—one for each mile—this is a singular honor for both Jillian and our team. I know you will all join me in congratulating Jillian on her appointment.
By the numbers
Our official numbers, as of this morning, have us at five Walkers officially signed up and $7,639 raised so far. That’s good for fourth place in the team standings. However, I have an additional $2,000 in donations from my latest direct mail campaign that have not yet been credited. That will not move us up in the standings—we trail third officially by about $2500—but it does keep us on the top page of the leader board. The top team has raised nearly $13,000. We’re closing in on $10,000.
…this is a singular honor for both Jillian and our team.
The standings, though, are less important than what we are trying to do for NET cancer research. Jillian’s becoming a Walk Hero creates a platform for raising awareness about NET cancer. Every new member we pick up is one more spokesperson who also helps raise awareness. Every event we hold is another opportunity to spread the message about this disease and what it does.
The personal touch
Sometime in the next two months, our local daily and weekly newspapers will run stories about my personal Marathon Walk effort. They’ll run a picture of me striding along on a training walk. But the important thing about those stories will have nothing to do with me. They will give me the opportunity to tell our NET cancer story to an audience that may not have heard it before. That chance to educate people about this vile disease is every bit as important as the money our events will raise.
Jillian’s becoming a Walk Hero creates a platform…
A few months ago, we received a check from Safeco Insurance because of the efforts of the people at W. T. Phelan in Belmont, MA last year. In the next few weeks, we will create a photo-op with Matt Kulke and others to formally present that $3000 check. We could just have submitted that check and moved on. But that presentation, again, gives us an opportunity to get the word out about NET cancer and carcinoid syndrome and the ongoing research the Dana-Farber Cancer Institute is doing in that area.
Create Walk opportunities
As you think about your next event, please also think about it in those terms. As I say all the time, if you need me to come talk at an event, I’ll be there unless I’m already promised somewhere else. I’m sure others on the team can make similar offers. But each of us has a NET cancer story to tell—and those stories matter.
We could just have submitted that check and moved on.
While many of you know something about Walking with Jane, the foundation I set up after my wife died, most of you only know the webpage and what we do with DFCI. In addition to that, among other things, we give scholarships at the school Jane and I taught at and at Bridgewater State University, where Jane did her undergraduate degree and some of her graduate work.
Activity ideas
This year’s recipient of the BSU scholarship is Devin Kenney—a double major in chemistry and biology, who is also pre-med. He and his brother run a small company that does reptile shows. He has offered to do a show for free for us as a fundraiser. I have no idea how to make that work, but if you do, I offer you his services. Just let me know what your plan is and I’ll put you in touch with him.
…each of us has a NET cancer story to tell…
We are also looking for t-shirt sponsors again this year. I’ll have a letter shortly I’ll send out to team members for soliciting those. Sponsor levels include: platinum for $1000—the company logo on the front of the shirt; gold for $500—the company name on the front of the shirt; silver for $250—the company logo on the back of the shirt; and bronze for $100—the company name on the back of the shirt.
Moving ahead
We already have two platinum levels from money donated last year after the shirts were printed—including Safeco Insurance—and four bronze sponsors from people who jumped the gun locally, knowing I was going to ask. You can start without my letter if you want, but I must have all sponsors in hand no later than August 15.
We are also looking for t-shirt sponsors…
Saturday, I was at a local craft fair. The weather was too nice, so we didn’t do very well, but we made a little money and we educated a few people. Next week, we will do a meat pie supper for Relay for Life and a yard and craft sale in early June for the same group. I’m working on a mini-golf tournament and a comedy show and another direct mail campaign for the Marathon Walk. And I’ll set up a booth at additional craft fairs over the course of the summer. I’m retired and widowed. I have way too much time and not enough to fill it with.
The learning process
But I’ve learned a lot about fundraising and NET cancer both along the way. I’ve learned to listen to what people are saying. I’ve learned that there are people who know how to do things I have no clue about—and if I ask them how to do it, they’ll be glad to help me figure it out. The people in the Walk office are more than willing to get you together with people who know how to run a golf tournament—or anything else—and you should use them as a resource when you can.
I have way too much time and not enough to fill it with.
And I’m always here. If I don’t know how, I’ll find you someone who does. And if no one does, we’ll figure it out together. You can always email me at walkingwithjane@gmail.com.
Facing the Walk challenge
Jillian raised almost $7000 last year. Virtually every idea she had was brand new to both of us. Some worked really well. Some crashed and burned. But the one thing I know about NET cancer patients is there is no quit in them. There’s no quit in their caregivers either.
…we’ll figure it out together.
So here are the three challenges for this month: 1.) If you are not signed up yet, get signed up; 2.) recruit at least one other person to join our team; 3.) Raise some money. With 144 days standing between us and the Walk, we just need to keep moving forward.
Talk to you in June, if not before.
Pax et lux,
Harry
Jillian (right) is a Walk Hero this year. She is also one of our co-captains.
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.
Your experience
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.
A call for writers and subjects
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.
Thoughts on starting points
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.
The value of a community goes beyond emotional support. A community shares knowledge about what each of its members is experiencing. Shared knowledge is no less important than shared joy and sorrow.
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.
The need to listen
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 elephants in the room
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.
Some things, you never forget
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.
Walking the talk
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.
Being brave because we need to be brave
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.
The unkindness of strangers
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.
We need everyone–starting with you
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.
Come walk with us
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.
We need every caregiver and every NET cancer patient’s support if we are going to find the money to cure NET cancer. Come walk with us.
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.
The empty grave
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.”
Mourning and killing
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.
The first burden
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.
The second burden
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 responsible and the impossible
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.
Facing the impossible reality
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.
Impossible isolation
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.
Creating a new road
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.
Recruiting stories
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.
Coming together
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.
Together, we can do anything–nothing is impossible.
