Dear friends, I finished my term as chairman of the Greater Fall River Relay for Life last night. People are not happy I am leaving but understand there is just too much on my plate. I have not stopped fighting Jane’s cancer since the day she was diagnosed. Since her death just eight days short of 31 months ago I have carried on both that fight and the fight against everyone else’s as well–at least it seems that way sometimes. As I said to people last night, I need to focus my energies more tightly on NET cancer and healing my own wounds.
I know it will not bring her back. I know it will not return joy to my life.
It feels awful. The members of the committee are great fun to work with and their goal is a good one. But the American Cancer Society is spending no more money on NET cancer than when I started. The size of the pie is not growing at the national level so there is no new money they can dedicate for NET cancer research–or research into any other cancer. Don’t misunderstand me–they do good and important work and I will still do what I can for them. I nearly lost my sister and sister-in-law to breast cancer, a brother to melanoma, and more friends and acquaintances to various cancers than I can count. And I’ve lost neighbors, friends, former students and one of my favorite uncles to cancer. But research into all those cancers is well-funded. NET cancer research is not.
Financial bottom lines
During my tenure as Relay chairman we have raised over half a million dollars for ACS. Our Walking with Jane Relay team has raised nearly $16,000 of that total.
…we have generated almost $170,000, about $33,000 since the first of January alone.
But during that time Walking with Jane has also been growing. Since May of 2011 we have generated almost $170,000, about $33,000 since the first of January alone. The lion’s share of that money has gone to NET cancer research with the rest going into general cancer research
sponsored by ACS and the Dana-Farber Cancer Institute. We are among the fastest growing non-profits in New England–and perhaps in the US. I can no longer chair both the Relay and Walking with Jane and do either one justice.
Emotional bottom lines
I am not happy about the decision. Too much of the Walking with Jane work is stuff I have to do alone: drafting letters and articles, doing research, and designing posters and tickets are solitary pursuits. I will miss the meetings and the people who attend them. They make working on Relay an enjoyable experience. They make me laugh–and that is a thing I do not get to do very often since Jane died. I very much enjoy the social aspect of what we do together.
I have not stopped fighting Jane’s cancer since the day she was diagnosed.
But I am worn out. I want to be able to cry when I need to cry without worrying that I am letting someone down every time I am non-functional for a day or two. I need time to truly grieve Jane’s death and come to terms with this aching emptiness that ambushes me every time I walk through the door at night. And I need to find the peace I know will only come from finally being able to say, “NET cancer is dead. We killed it. And your diagnosis, my love, was the key moment in its demise.”
I know it will not bring her back. I know it will not return joy to my life. But it will make the lives of others better and happier. That will have to do.
This morning I received a short note from a young woman who walked with her brother and their friends on our Marathon Walk team last year, that her father, who had NET cancer, died Sunday. They have asked that donations be made to the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at the Dana-Farber Cancer Institute in lieu of flowers.
…far more remains to be done.
I am deeply saddened by their loss–and deeply touched by their generosity. I have written her a long note this morning expressing my condolences and my heartfelt thanks for their efforts on behalf of NET cancer research.
NET cancer reminder
This loss hurts more than I can easily express. I never met their Dad. But our NET cancer team and our efforts meant enough to them last year that they hung around until I finally reached the finish line.They are a wonderful group of young people who should not be confronting what they now face.
I don’t know how we go about fixing this.
Their father’s death serves as a grim reminder that while we have made great progress in the last 30 months in our work against this disease, we still do not have a cure and likely will not have a cure anytime in the immediate future without finding and committing far more resources than we have to this point. We still spend a pittance on this disease despite the fact it kills more Americans each year than many other forms of cancer–not to mention other diseases–that are better known and better funded.
NET cancer puzzle
I don’t know how we go about fixing this. I don’t know how we make primary care physicians more aware of the disease. I don’t know how we make the general public as aware of NET cancer as they are of cystic fibrosis–a disease that kills about 500 people a year–or ALS–where we diagnose about 5,600 cases each year. I don’t know how, with charitable donations for cancer research seemingly in decline and government resources clearly in decline, we find increased funding for a form of cancer few seem to have heard of–and fewer seem to care about.
We still spend a pittance on this disease…
But we have to try.
The missing person
That young woman’s Dad won’t be there to walk her down the aisle. Jane won’t be there to celebrate our 25th anniversary. Another friend’s wife won’t be there for graduations, birthdays or births. To quote Bob Dylan: “How many deaths will it take ’til we know that too many people have died?”
I am deeply saddened by their loss–and deeply touched by their generosity.
I said when Jane died I would do whatever it takes to bring this form of cancer to bay. This morning’s note reminds me that for all the work we have done to this point, far more remains to be done.
June 22 I will finish my term as chairperson of the Greater Fall River Relay For Life. I’ve done and learned a lot during my tenure in that office. But now I need to turn my full attention to this one piece of the larger War on Cancer. Lives depend on what we do.
The New York Times did a story two weeks ago about the “feel-good” war on cancer. In it they revealed that the CEO of Komen for the Cure pays herself $650,000 a year and that the vast majority of the money the group raises is spent on “raising awareness” and “education” about breast cancer. In fact, of the more than $2 billion the group has raised in the last six years, only about $77.5 million was spent on breast cancer research.
…every penny you donate for NET cancer research will go into NET cancer research…
I read numbers like that and it makes my blood boil. First, because you would have to be living under a mountain not to be aware of breast cancer in the US at this point; and second because her salary amounts to more than ten percent of the total amount raised for NET cancer research last year.
What would $77.5 million mean to NET cancer?
But I also have to admit to a certain level of jealousy fueling my anger. I can only dream about what we could and would do if we had a research budget of $77.5 million. The only thing in the way of full testing of both the Seneca Valley and Uppsala viruses would be setting up the safety protocols. We’d be able to accelerate the DNA research on NET cancer lines. We could actually pursue a number of other interesting ideas that I only hear occasional whispers about now.
Knowing what is killing you offers little solace in the absence of a potential cure…
Actually, that amount of money would likely overwhelm our slender research facilities. We might actually be able to afford to do the in-service training for primary care physicians we all dream of but have yet to find the money to pull off as well. And with that training we might actually begin to find more cases of the disease before it becomes irreversibly fatal.
NET cancer funding declines ahead?
But we are not going to see $77.5 million this year or next year or even the year after without a drastic change in the way things are. The fact is, I more than half expect we will see a decline in the $5 million total all the NET cancer groups raised combined last year. The economy is shaky. My friends at the American Cancer Society Relay For Life tell me that numbers are down virtually everywhere from where they were a year ago. I have not asked about the Boston Marathon Jimmy Fund Walk numbers year-over-year yet, but my sense is the numbers are running behind–though my own group is ahead of last year financially at this point.
The economy is shaky.
And the sequester is doing damage as well.
What I know and what I don’t know
I don’t know what happened at Komen. They had a great idea and a great mission. I don’t know why so many of the larger cancer charities pay their CEOs so much money or why they spend so much on administration and raising awareness–and so comparatively little on research.
I also have to admit to a certain level of jealousy fueling my anger.
There are cancers out there where raising awareness is an important thing–NET cancer among them. It is important people know about symptoms and ways to test for them. But research is hugely important as well. Knowing what is killing you offers little solace in the absence of a potential cure–or anything that even remotely resembles one.
My NET cancer pledge
So here’s my pledge: I’ll never take a penny for running Walking with Jane; every penny you donate for NET cancer research will go into NET cancer research, every penny you donate for scholarships will go into scholarships. For now, I’ll work on finding corporate and foundation money to fund education programs for doctors and the general public–or pay for them myself. I’ll pay for the office supplies and stamps and whatever else it takes to keep us moving forward.
…the CEO of Komen for the Cure pays herself $650,000 a year…
I know you work hard for the money you donate to charities like this one. We should all make sure that money is spent with that in mind.
I mowed the lawn on Friday, discovering in the process that the hummingbirds have returned. Later, I went to the cemetery to visit Jane’s grave for the 29 month anniversary of her death from NET cancer. It was a beautiful spring day, so afterwards I drove down to the waterfront as we often did after a day of working in the garden or in the classroom. My plan, initially, was just to sit in the car and look out over the water but something moved me to take a walk on the boardwalk.
It took close to 50 years to realize even a fraction of Sydney Farber’s dream of curing childhood leukemia…
It was not my typical walk. I moved slowly, remembering all the times we had paced along together. We never walked anywhere slowly–even when the walk was an aimless wander. But my heart was not in that kind of walk Friday. It was a walk so soaked in memory I could not move quickly.
The missing swan
At one end of the boardwalk, the Fall River empties softly into the Taunton River. Geese, ducks and swans nest and rest there. We would stand on the bridge sometimes and watch them float by. We particularly liked to watch a pair of swans. At this time of year they had not yet hatched their latest brood and when you saw one you saw the other.
We are currently raising about $200 a day…
But the last two years only one swan is there. Somewhere he–or she, I can’t tell one sex from the other in swans–lost his other half. Friday he coasted near the far bank preening his feathers and looking as lost among the ducks as I feel most days among people. My social skills don’t get much work these days. Most of our friends still work in classrooms and those who don’t have lives and responsibilities of their own.
Sleeping with NET cancer
Still, I make the bed, wash the dishes, shower, shave, and brush my teeth every day. I do the paperwork and planning raising money requires. I follow the research–even when most days the results are depressingly similar. I write, though too often for an audience that seems too small to justify the effort. I clean the house, I mow the lawn, I work in the garden. I look for meaning. It is what I do–what I have always done.
I am still traumatized.
The dreams at night are no longer hideous replays of the end of Jane’s life. They have become more consoling–more focussed on the future than on what might have been. But I still have trouble forcing myself to go to bed at night–I am still traumatized. And getting up has become increasingly difficult in recent weeks.
The NET cancer problem
The fundraising is not going well from my perspective. Yes, we are ahead of last year a this point. But I have used up everything I used a year ago and I don’t have new ideas for the months ahead that will get us to the goals I’ve set for this year. It has finally dawned on me that getting to those goals means raising nearly $500 a day every day this year–and next year’s goals will require more than $1000 a day. We are currently raising about $200 a day–and that effort is taking every ounce of energy I have to keep up with.
But the last two years only one swan is there.
Nor is the research going particularly well from my perspective. The pair of viruses that looked so promising ten months ago seem to be stalled by lack of funding and viral research protocols. And there may be other issues there as well. And with the tiny quantities of research money we have progress in all areas of research will be painfully slow.
Life after NET cancer
I am not giving up, though. I’ll keep looking for breakthroughs in both fundraising and research. I have to keep reminding myself that I have only been dealing with this for a bit less than three years–and only a bit more than two in terms of raising money and general awareness. It took close to 50 years to realize even a fraction of Sydney Farber‘s dream of curing childhood leukemia–and he eventually had resources I can only dream about at this point.
It was a walk so soaked in memory I could not move quickly.
I don’t know how that swan lost its spouse. I don’t know what it feels inside. I don’t know whether it is merely waiting for death or is working to return to life. But I know how I lost my wife and I know what that feels like inside–and I refuse to stop living so long as there is any chance I can make a difference.
The hummingbirds came back on Friday.
Help us beat NET cancer. Join our Marathon Walk team or contribute to it today. All Walker raised funds from our Walking with Jane team go to research into NET cancer.
Raising awareness about NET cancer is a very important part of our Walking with Jane mission. We want a world in which no one hears what Jane and I heard when she was first diagnosed: “I’ve never heard of this type of cancer before.” We want a world in which all the zebras in medicine get diagnosed quickly and accurately.
…when breast cancer research gets the sniffles, NET cancer patients die.
But that being said, an accurate diagnosis means nothing when there is no cure for the disease. Knowing what is killing you may be important to some, but most of us hope that a diagnosis means we can start doing something positive to regain our health.
Research, not awareness, creates cures
Right now, if we do not discover NET cancer very early–when surgery is still a curative option–we have no cure. We have drugs that will slow the disease’s progress and relieve its symptoms–and we have more of those than we did even five years ago. We have a radiation treatment in trials, but our experience with it in Europe shows it, too, is only palliative.
Research will ultimately solve the cancer riddle.
If we don’t spend significant amounts on research every year, patients who are diagnosed in even the middle stages of NET cancer will continue only to know what is killing them.
The feel-good war on cancer
I am not interested in what a New York Times piece this weekend called a “feel-good war on cancer.” Unfortunately, for too many cancers, that is exactly what we are getting. I participate in the Relay for Life. I chair the Fall River event and will, again this year, attend a number of other Relays. One of the highlights of every Relay is the Survivor Lap–a single lap around the track made by those who see themselves as “cancer survivors.”
Being able to put a name on your torturer is a meaningless piece of knowledge…
I admit to being buoyed up by that lap every time I see it. I remember too well the days during which people only spoke of cancer in whispers–if at all; when we viewed cancer as an absolute death sentence; when no one had any real hope for anything that even looked like a cure. It was a time of joyless let’s pretend: if we did not talk about it then it would not happen to us.
A new game of let’s pretend
Unfortunately, today, we too often engage in a different variety of let’s pretend: we pretend that greater awareness of cancer is a cure for cancer; that somehow a mammogram does not just detect cancer, it cures it; that football players wearing pink in October magically transforms all breast cancer tumors into benign cysts that will vanish if we all cheer hard enough; that, in fact breast cancer is the only cancer there is and that being aware of it will eliminate it as a public health issue.
…we too often engage in a different variety of let’s pretend…
And they are not the only ones guilty of this. We measure our success against cancer too often by the numbers of people who survive five or more years after they are diagnosed. But if we diagnose someone at 65 with a form of cancer we do not know how to cure and they die at 70 or detect the cancer two years earlier at an earlier stage and they still die at 70 were we any more successful at curing them than we were before. Early detection without a cure to hand is a cruel joke.
…we viewed cancer as an absolute death sentence…
And measuring NET cancer survivorship against that five-year scale is an even more cruel joke. By that measure, Jane would have been a 30-year survivor. Being able to put a name on your torturer is a meaningless piece of knowledge absent a cure.
Research key to more than NET cancer
Research will ultimately solve the cancer riddle. But how rapidly that riddle gets solved depends entirely on how much we spend on research. The less money we spend on research the slower our progress at finding real cures. If we spent the $77 million on awareness and the $2.2 billion on research we’d likely be a lot closer to a cure for the breast cancers we do not know how to cure than we are.
…we have no cure (for NET cancer).
And maybe a few more scraps would fall off the table to fund research into NET cancer and the other so-called minor cancers.
Sex and the single cancer
But breast cancer is sexy: it sells appliances, cars and dresses–not to mention the ubiquitous pink ribbons. And it pays a lot of salaries for people who have nothing to do with research–and everything to do with marketing. We can pretend we have done something to fight cancer when we buy a pink-ribboned blender. Unfortunately, all we have really done is fund a hyper-awareness of one form of breast cancer that does nothing to actually find a cure for even that form of cancer.
…an accurate diagnosis means nothing when there is no cure…
As I posted elsewhere recently about the effect of the sequester, when breast cancer research gets the sniffles, NET cancer patients die. The reality of breast cancer research funding is that it has a bad case of the flu. What that means for the rest of us in the cancer war trenches, I shudder to think.
Help us beat NET cancer. Join our Marathon Walk team or contribute to it today. All Walker raised funds from our Walking with Jane team go to research into NET cancer.
Help us during the $24-in-24-Hours Challenge for the Greater Fall River Relay for Life today.
My Total So Far: $2131
Walking with Jane Team Total: $3022
Greater Fall River Relay Total: $48,424.13
Midnight $24-in-24 Hours Final Update
It’s over. Other than a two and a half hour break to run a Greater Fall River Relay for Life Captains’ Meeting, I’ve pretty much been tied to this chair since 8 a.m.
I’d hoped to launch a Pinterest Page today, as well as a Youtube presence but just keeping up with what I had in front of me was more than enough. Bouncing from one social networking platform to the next was pretty enervating. Once I calm down I think I will get a good night’s sleep.
We raised $1290 over those 16 hours. Twenty-three individuals made monetary contributions, two organizations did likewise, and two new people signed on to our team for the next push.
Those donations had a big impact on where we are financially. My personal total increased from $610 this morning to $2131 tonight at close of business. That places me second among all Greater Fall River Relay individual fundraisers.
The team made heady progress today as well. We started the day in eighth place overall. Tonight we are in third with a total of $3022. That earns us a bronze medal with 58 days left before Relay. We are still behind where we need to be to reach our $20,000 goal, but I feel a lot better about that than I did this morning.
We still have lots of fundraising to do. We will continue to try to raise money online, though nowhere nearly as intensively as we did today. Our focus will now turn to three events.
A week from now we will be making final preparations for our Second Annual Walking with Jane Pasta Supper at Westport High School on May 2 from 5-7 p.m. Tickets are $10 for adults and $5 for students. If you want tickets you can call me at 508-674-0279 or email me at walkingwithjane@gmail.com. You can also mail us a check made out to Walking with Jane, P.O. Box 9721, Fall River, MA 02720 for the number of tickets you want. Put Pasta Supper in the memo line so I will know which event you are putting your money in for.
One month later, June 2, we hold our Second Annual Walking with Jane Yard and Craft Sale at the Westport Grange. Sites are $25 and you can reserve one by contacting me at any of the addresses above. If you send a check, puyt yard sale in the memo line.
Finally, we will be doing fundraisers at the Greater Fall River Relay for Life June 21-22 at Bishop Connolly High School in Fall River. Come walk with us that night.
All three of these events will benefit our Walking with Jane Relay for Life team.
Of course we will also continue to work to raise money for the Jimmy Fund Marathon Walk September 8. I will walk to Boston again this year from Hopkinton along the route of the Boston marathon. We have a number of events in the planning stages for that event for this summer. Stay tuned.
We are looking for additional team members for both Relay and the Marathon Walk, so let me know if you are interested.
And so I’ll say good night now. Thank you to all of you who took part in today’s efforts–and to all of you who will take part in the next.
With an hour to go before midnight–and 45 minutes before the dollar-for-dollar match expires, 23 people and two organizations have made contributions so far today totaling $866.
Thanks this hour to Daniel Leach- St. Germain, Jennifer Honsa and Laurie Fernandes for their contributions to the cause.
And thanks, as well, to all of you who have gone out of your way today to offer encouragement and share all these posts we have written today for Twitter, for Facebook, for tumblr and for here. We could not have done this without you. I’ve written well over 4000 words so far today.
There is still time to make a contribution before the 11:45 p.m. matching deadline and the midnight final deadline for contributions for the $24-in-24-Hours Greater Fall River Challenge ends.
10 p.m. $24-in-24 Hours Update
We’ve raised close to $200 in the last 60 minutes. Thanks to Michelle Sieman, Meg Flanagan, Chari Swist,Coyne and Powers Insurance Agency, and Sue Welch in addition to some anonymous donors for their help in moving us forward.
You can help us keep the momentum going by making a donation right now. We have just an hour and a half before our $2000 matching offer expires. We still have $1510 of that fund we could claim tonight. But only with your help.
I’ve outlined over the course of the day many of the things ACS does to help patients, their families, and researchers in the fight against cancer. You can help with all of those things just by making a contribution tonight. And if you make that contribution before 11:45 p.m. it will be doubled up to a total of $1510.
Thanks to all of you who have helped out so far today. I’ve been at this since 8 a.m. this morning. Less than two hours to go. I could use a Jerry Lewis ending.
9 p.m. $24-in-24 Hours Update
And we’re back live after a highly successful Relay Captains’ Meeting.
Thank you to Brandon Cardoza, Nina Santos, Rae Brinkmeyer, Tracy Medeiros, Sam Texeira, and Hanna Silva, all of whom made donaions to the cause while I had to be away.
While I’ve been away from the machinery $124 has come in, raising our official total for today to $526. With the matching money, that comes to $831, but that will not be official until 11:45 tonight when we will close the matching so that our anonymous donor can match those funds before we turn into a pumpkin patch at midnight. That puts us at $1136 total raised by me so far for Relay. Our team total is $2002 and the Relay total is $47,071.13.
We still have $1695 in matching funds on the table at this point that are unclaimed. We can’t access that money without raising an equal amount. We have three hours and three minutes to do that in, so now would be a good time to make a contribution.
5:15 p.m. $24-in-24 Hours Update
Jennifer Leonardo and Melanie Leiter have just made donations to our $24-in-24 hours campaign. Those donations–as well as all the other donations received so far today will be matched by an anonymous donor–up to $2000 total. http://main.acsevents.org/goto/hproudfoot
4:50 p.m. $24-in-24 Hours Update
OK, This was going to be the 5 p.m. deal, but Kerri has forced my hand ten minutes early. I have a donor who has agreed to match all Walking with Jane donations made to my Relay page today–with the exception of the WES donation that they already matched–up to $2000.
That means your donation will essentially double if you donate today before midnight.
And if you already donated, don’t worry. You’re covered, too.
Can we do this?
4:30 p.m. $24-in-24 Hours Update
Thanks this hour to Beth-Ann Donovan and Jake Menard who have joined the list of people who have donated to our efforts today. I’m hoping by 6 p.m. we will have my total to $1000.
Seven and a half hours left–and a long way to go still. Thanks to all of you who have spread the word, 960 people have been invited. Hoping they will all show up for at least a little while tonight for some part of this Social Mediathon–I may decide eventually on a spelling for that. We haven’t raised a ton of money but I’ve learned a number of things so far–and expect I will learn some more between now and midnight. http://main.acsevents.org/goto/hproudfoot is where you go to make a donation.
3:15 p.m. $24-in-24 Hours Update
Becky Martins has made a donation to move us forward.
Another thing ACS does with the money you donate is maintain a 24-hour cancer information phone line at 800-227-2345. That’s an easy number to remember. And it is always there when you need information about your cancer and your treatment issues. So you really should join with the students at Westport Elementary, Jane Dufault, Danielle Dias, and Becky Martins in supporting this effort.
Or you could join Dan Albernaz and Remi Soule on or Walking with Jane Relay team. They just signed on today. If you are local, you should, too.
2:00 p.m. $24-in-24 Hours Update
Second graders at Westport Elementary received a Walking Stick for their school’s efforts to raise money for Walking with Jane.
Walking with Jane Chairman Harry Proudfoot talks to Erin Connors’ students before presenting the Westport Elementary School with a Walking with Jane Walking Stick.
It’s been a busy hour. I’ve written an agenda, made some FB posts, talked to people on our Walking with Jane Relay team and tweeted a couple things out.
I also remembered that I have not mentioned a couple of other things ACS does that make a real difference in the lives of both cancer patients and caregivers.
Information is hugely important at every stage of the disease. I remember the day we got Jane’s diagnosis. Even ACS did not have much on their site about it. But that site, cancer.org, has grown a great deal since those days–and even a so-called minor cancer–gets pretty solid support there now.
The steady expansion of that site gives cancer patients of all stripes the information they need if they are going to be active participants in their own treatments. Jane and I were lucky. We had great doctors who were willing–and able–to take the time to explain to us what every treatment and option meant. But not every doctor is that patient.
I’ve been writing for a long time. I know how hard it is to take something as complicated as cancer is and make it simple enough for the average layman to understand. That kind of writing is time-consuming–and if you are paying someone to do it, that ability does not come cheap.
That’s why what we are doing today with the Greater Fall River Relay is so important–why it is important every day. There are patients out there who need the help only our dollars can provide. If you can help today, please do. Go to our page right now and make whatever donation you can afford. You’ll help support patients in so many important ways above and beyond the research side of things.
1:00 p.m. $24-in-24 Hours Update
Danielle Dias has joined those making a donation so far today. Dan Albernaz has joined our Relay for Life team.
Nearly 800 people have been invited so far to join this party. If each donated just $10 we would raise about $8000 today from my efforts alone. That would put our Relay over $50,000–well on our way to our $285,000 goal.
If you can help, now would be a good time to do so. We need to raise $100 an hour between now and midnight to reach my personal goal of $2000. We can do this–but only with your help.
12:15 p.m. $24-in-24 Hours Update
Thank you to Jane Dufault who has made a donation this morning. The totals above reflect those changes for my fundraising and for Walking with Jane.
People sometimes ask why I work with the American Cancer Society as well as with various NET cancer groups. And I will admit my energies sometimes seem stretched a bit thin.
But I worry about more than NET cancer. This winter, I lost a neighbor to a brain tumor, a former student—a mere 30 years-old—to complications from uterine cancer, and a teaching mentor to colon cancer. I also learned an old friend I had not heard from in some years has seemingly fought off chordoma—a rare form of spinal cancer.
We’ve made progress on cancer but we are still a long way from an easy cure for any of them. ACS helps supply the money for some of the research but plays a more important role with patient and family support services.
Keeping a positive attitude is important when you are fighting cancer. But that is hard to do when your hair is falling out and you look and feel like hell. ACS programs help people find wigs and scarves and learn to use make-up more effectively. When you look good, you feel better.
Patient support is at the core of the American Cancer Society’s mission–and there is nothing more important for a cancer patient than having family close by when they are undergoing treatment. The ACS sponsors Hope Lodges across the country so families can stay close to patients without spending an arm and a leg.
Sometimes getting to treatments can be difficult. ACS provides transportation to major cancer centers across the country. And getting information about what you are facing is as close as a phone call a few clicks of the mouse.
To a cancer patient, these things can be just as important as research—and all of them cost money.
So June 21-22 I’ll be up for 30+ hours walking in circles and doing all I can to make our Relay in Fall River a success. Cancer never sleeps, so neither will I.
You can help by going to my Relay for Life fundraising page and making a donation. If you do it today you’ll be helping us with our $24-in-24-Hours Campaign. Walking with Jane raised over $2600 last year in this one effort. Help us beat that number this year.
11:00 a.m. $24-in-24 Hours Update
Keeping a positive attitude is important when you are fighting cancer. But that is hard to do when your hair is falling out and you look and feel like hell. ACS programs help people find wigs and scarves and learn to use make-up more effectively. When you look good, you feel better. Help support patient support from ACS with a donation today to our Walking with Jane Relay for Life team.
10:09 a.m. $24-in-24 Hours Update
Things have been too quiet the last hour or so, so here is another reason for you to donate to this effort today.
Patient support is at the core of the American Cancer Society’s mission–and there is nothing more important for a cancer patient than having family close by when they are undergoing treatment. The ACS sponsors Hope Lodges across the country so families can stay close to patients without spending an arm and a leg.
Thank you to the Westport Elementary School students, staff, and PTO for their $221 donation to kick off our fundraising efforts in today’s $24-in-24 Hours Challenge. I’ve already updated the total below. I’ll add a ticker above shortly so you can easily see where we are.
Last year the American Cancer Society spent $1 million on NET cancer research. That’s about 20 percent of all the money spent on NET cancer last year. It’s one reason I do Relay For Life to support their efforts. Today is Greater fall River’s Annual 24-in-24 Hours Challenge. Please help Walking with Jane’s Relay team with a donation today.
8:14 a.m. $24-in-24 Hours Update
Good morning and welcome to the $24-in-24-Hours Challenge of the Relay For Life of Greater Fall River. I’ll be live blogging through this post over the course of the day.
Today’s goal is pretty simple: see how many times we can raise $24 online for our Relay June 21-22 and Bishop Connolly in Fall River. I’ll be posting reasons you should support our team in that event from now until midnight–with a brief break while I go chair a Relay Captains’ Meeting.
I’ll be live blogging through this post over the course of the day.
My personal goal for today is to raise enough money to reach my $2000 goal for this year. I’ve already made a good start on that: to this point I’ve raised $831. But I am really hoping our Relay team can make a big push today as well. So far our team has raised just over $1400 toward our $20,000 goal.
So think of this as a Social Media-a-thon. I’ll be posting here, on walkingwithjane.org, sending emails, tweeting, and, if all goes well, launching at least two other Walking with Jane social media sites over the course of the day.
It should be an interesting day. So let’s get this party started. You can help kick-start this campaign right now. Just go to my fundraising page–posted below–and make a donation. Any amount will help.
I made a comedian cry last week before our Zebra Comedy Night at the Elks Lodge in New Bedford. Jane’s NET cancer story–even in small doses–does that to people. Twenty-eight months after her death it still does it to me.
I don’t walk for Jane–I walk with her.
After the show, he asked me what keeps me going in this fight. No one has ever asked me that question before–though it is a good question. Part of the answer has to do with wanting revenge for Jane’s death and all the years together we lost as a result. But there is more to it than that.
NET cancer can
I watched Jane die. She fought heroically from the day she was told she most likely had cancer to the day they told us there was nothing more they could do for her. I watched the debilitating effects of the NET cancer endgame claim her mobility, her patience, her pride, her self-control–everything that made Jane, Jane.
I walk, I write, I plead, I beg.
I helped the nurses change her bedding every time she lost control of her bowels, helped them bathe her, and stood vigil day after day and night after night. I lost 20 pounds and countless hours of sleep in the 28 days she was in the hospital losing her life.
The unheard terror of NET cancer
We tried everything there was to try but it was not enough to stop the light in her eyes from going out. And when she died, it was in my arms. There is no more hopeless feeling in the world than to hold the still body of the one you love, knowing it will never move again–that it cannot return your embrace.
NET cancer is just one more cancer in the pantheon.
Four people died last week in the Boston Marathon bombings and their aftermath. For a week it crowded nearly everything else off the pages of the newspapers and the airwaves. Even the explosion in West, Texas that killed 16 and leveled a town had difficulty finding room in America’s consciousness.
Two-hundred-thirty-one families lost a loved one to NET cancer last week. By the end of this week another 231 families will do the same.
NET cancer not front page news
This will not be front page news. The nation will not mobilize battalions of police and National Guardsmen to hunt down this mass murderer that will claim 12,000 lives this year alone. NET cancer is not a terrorist. It is not even perceived as a major public health issue. It is just one more cancer in the pantheon.
Two-hundred-thirty-one families lost a loved one to NET cancer last week.
But for those 33 people NET cancer kills every day, for their families and loved ones, the burden is just as heavy–and just as senseless.
The empty chair
I don’t know what it feels like to die of NET cancer–I can only imagine what Jane went through within that shrinking body. But I know what it feels like to be the one left behind; I know what it is to come home to an empty house; I know what it is to awaken in an empty bed; I know what it is to find a hummingbird’s nest and not have the person who would appreciate it most be there to share it.
I watched Jane die.
So I walk, I write, I plead, I beg. I have touched a grief so profound I cannot bear the thought of another tasting its vileness.
Walking with Jane
I don’t walk for Jane–I walk with her. I walk with her to try to save others the pain and humiliation she went through. I walk with her to prevent others from experiencing the grinding loneliness that is the life of a widow or widower after the death of their love.
I made a comedian cry last week…
We walk to end NET cancer for the 33, for the 231, for the 12,000–and for all those who die from it without knowing they had it.
This is not a day to write about cancer. Neither was yesterday. There is too much pain in Boston. There is too much pain in my heart.
But for today, we will weep and we will mourn.
People ran yesterday. They ran to celebrate. They ran for pride. They ran for hope. They ran for love. Some ran to raise money for cancer research, for domestic violence programs, for local hospitals–for dozens of other worthy causes.
And suddenly people were running for their lives–and running to save the lives of others.
Into darkness
Dreams died yesterday. Nightmares began.
One young woman was a dancer. She lost her leg.
…a city of ideals that tries to live up to the image of the “city on a hill…”
An eight-year-old died–and all he might have been and done died with him. His mother and sister are seriously injured. His father had just crossed the finish line in triumph that changed instantly to tragedy.
Out of the darkness
The temptation is to focus entirely on the negative things–to wonder at our collective inhumanity.
…our love and compassion will overwhelm those who would do evil.
But do not lose faith in humanity from this. Rather, let the actions of the people at the finish line rushing to help the injured underline the greatness of human kind. Think about the race officials using their lanyards as tourniquets, the runners running through the finish line and to the hospital to give blood, the doctors and nurses in the first aid tents rushing to the injured. That is humanity. The bombers are evil incarnate. But their evil is as nothing compared to the goodness of the vast majority.
The choice
We can let these events destroy us. We can barricade ourselves in our homes and decide no one is to be trusted. We can choose to focus on our immediate friends and family–excluding all others from our lives–impoverishing ourselves as a result.
…do not lose faith in humanity from this.
Or we can continue to move forward with open hearts and open minds. We can choose to emulate the people who ran to the aid of others. If we do so, our love and compassion will overwhelm those who would do evil. They may have their small victories, but the final victory will be ours.
The wrong place, the wrong time
This morning, one of the doctors interviewed put it very well:
Dreams died yesterday. Nightmares began.
Boston is where the American Revolution began. It is where the idea of America–and what it means to be an American–was born. It is a city of learning, a city of compassion, a city of love. It is a city of imperfection–but it is also a city of ideals that tries to live up to the image of the “city on a hill” it aspires to.
We shall overcome
We will get through this. We will continue to strive for learning and patience and wisdom. No terrorist will change that. We simply will not allow it.
There is too much pain in Boston.
But for today, we will weep and we will mourn. And in September, we will walk.
From the perspective of anyone not named Harry Proudfoot it would appear we are off to a really great first quarter in our 2013 NET cancer fundraising efforts. Through March 31 our various efforts raised nearly $7200 for the Jimmy Fund Marathon Walk and Relay For Life of Greater Fall River. Three days into April, 70 individuals and seven local businesses have made contributions ranging from $10 to $250.
…help create a world in which no one deals with grief because of NET cancer.
That we are significantly ahead of where we were a year ago at this point should be a cause for celebration–as should the fact April has gotten off with such a bang as to have pushed us to about $8500 for the year. But I had hoped for much more at this point.
…I had hoped we would reach $200,000 this year…
While sponsorships for our Walking with Jane Marathon Walk team are off to a great start, I have been very disappointed by the returns on our efforts to get businesses more involved with Relay for Life locally. In January and February I visited over 80 businesses, including banks, credit unions and all the manufacturing plants in the Fall River Industrial Park. The results were disappointing. To date, one business decided to form a team–and the silence from the rest has been deafening. I’ll be going out on the road again shortly to make further attempts, but my original goal of raising at least $20,000 for the Relay and the American Cancer Society seems increasingly unlikely.
Falling behind on NET cancer financial goals
My financial goal for the year is equally in jeopardy at this point. After generating just over $100,000 last year, I had hoped we would reach $200,000 this year, although my original five-year plan only called for $150,000 this year. But even that lower figure looks like an enormous stretch with a first quarter that did not reach its $20,000 goal.
I had hoped for much more at this point.
That we missed our team recruiting goals for both our Relay team and our Walk team also causes me great concern. By April 1 I wanted both teams to have 20 members on board. The Relay team is in better shape, with 10 members signed up and about another 10 ready to do so. But the Walk team has but two members–and facing a $40,000 team goal that is a thing to worry about.
NET cancer website languishes
This NET cancer website has languished somewhat in the last three months as well. Part of that is the amount of energy a direct mail campaign takes. Part of it is the fact I spent much of the month of March fighting my way through a particularly nasty chest cold. And part of it was four months of fighting through a particularly blue period in my ongoing struggle with grief. It is sometimes that struggle that keeps me working on all of this: I would truly like to help create a world in which no one deals with grief because of NET cancer.
…70 individuals and seven local businesses have made contributions…
Unfortunately, that world is still a distant dream as I write this. But it will remain a distant dream without all of us working to change that situation. We are ahead of where we were a year ago: This time last year we had raised less than $3000, I was the only person on our Walk team and our Relay team had but eight people signed up. And the Relay for Life of Greater Fall River in general was far behind where it is now as well.
Reducing NET cancer to a myth
Some day cancer will be a story we scare unruly children with–a tale no more real than Hansel and Gretal. And NET cancer–though it may be among the last to die–will be just as mythical. But that will only happen if we all keep doing all we can to bring those events to pass.
Fighting NET cancer is difficult on every level imaginable. For patients, there is the constant round of injections and rising and falling hopes with every doctor’s visit and set of lab results. For primary care doctors there is the difficulty of trying to diagnose a disease you’ve been trained not to look for. For oncologists there is the limited set of treatments and the knowledge that for most patients all you can do is fight a delaying action in the hope a cure will be found before the patient reaches the critical stage where there is nothing left to do but manage the oncoming freight train of death.
Generating $200,000 this year would be another step forward.
For researchers there is the lack of funding for basic research or even–too often–for trials of promising therapies. NET cancer is a zebra–a supposedly rare disease–and that also makes it an orphan when it comes to the priorities of most drug companies and major research facilities.
Moving forward on NET cancer
When my wife Jane died of NET cancer December 10, 2010 I was emotionally, physically, and mentally exhausted. Watching someone you love die–walking them to the end of that road–is like nothing else I have experienced in my life. I don’t know where the strength came from for me anymore than I know where the strength came from for her. I do remember thinking to myself the night before she died that somehow in the previous 28 days I had become an old man–or at least that I was walking like one.
For someone like me, $100,000 is a huge amount of money.
But I was also angry–and determined that I would complete the task we had both set out to do: to kill this disease–not just for Jane, but for everyone. I did not know how much more angry I would get as I began doing the background research I knew would need to be done before I could be of any use to anyone. I did not know how frustrating things would get. I just put my head down and started trying to move forward.
The root of the NET cancer research problem
I pretty quickly learned just how bad the funding and resources problem was–and knew that it was the root of most of the other problems in the NET cancer world. In a world driven by money and profit NET cancer could not compete. I set out to change that before I actually understood the way cancer funding works. A group of us put together a Relay for Life team called Walking with Jane. We knew the money we raised would not be focussed on NET cancer–in fact would largely be spent on things far removed from our central concern. But none of us knew anything about raising large sums of money–and it seemed a good place to learn that.
And I still had no idea what I was doing.
And we were very successful. That first year, despite having no idea what we were doing, we raised almost $4500. People on the planning committee for the local Relay decided that initial showing meant I’d be a good candidate to chair the whole event the next year. Beyond that, I discovered, it had bought us a seat at the table where the people at the national level would actually return my calls–which is how I was finally able to start unraveling just how poorly funded NET cancer actually is.
Building the NET cancer battle
It was a lot worse than I thought it was.
That summer I took all I had learned from Relay and poured it into raising money for the Boston Marathon Jimmy Fund Walk. I discovered–through the Caring for Carcinoid Foundation–that there was a way I could get the money I raised spent entirely on NET cancer research at the Dana-Farber Cancer Institute. The only catch was either I had to raise $10,000 or join a team dedicated to NET cancer that would raise that amount–and Caring for Carcinoid just happened to have such a team. That summer I raised about the same amount for the Jimmy Fund Walk as our team had raised for the Relay for Life.
I just put my head down and started trying to move forward.
That fall, I set up the Walking with Jane Dybowski Fund for Neuroendocrine Cancer at DFCI, figured out how to generate another $25,000 for NET cancer research, had a friend help me find a lawyer to set up Walking with Jane as a 501(c)(3) nonprofit, and created, with the help of a former student, this website. And I still had no idea what I was doing.
NET cancer financial numbers
The truth is, I still don’t know what I am doing most of the time. Despite that, we found a way last year to more than double what we had generated the year before. Our Relay team created almost $10,000 for the American Cancer Society, my personal fundraising created almost $11,000 for our Marathon Walk team, which we had to rebuild almost from scratch from the year before. In total, we generated–through matching funds and direct donations to DFCI, Caring for Carcinoid, and ACS–just over $100,000.
Fighting NET cancer is difficult on every level imaginable.
For someone like me, $100,000 is a huge amount of money. It is $35,000 more than I made as a teacher in my best year ever. But in the world of cancer research–even in the world of NET cancer research–it does not amount to a significant amount. A single, small-scale Phase I trial of a new drug or treatment runs about $3 million. One conservative estimate puts the cost of finding a cure for NET cancer at $100 million. Given how much we have spent on breast cancer without being able to eliminate it–a disease we have little problem detecting–even ten times that amount strikes me as a fairly conservative estimate.
Starting points
But $100,000 is a start. Generating $200,000 this year would be another step forward. With the first quarter of the year just ended it is time to step back and see where we are in that effort. But that is a story for next time.
