NET cancer funding mountain is high

Killing NET cancer is not going to be easy. Nor is it going to be cheap. The lowest estimate on the cost of finding a cure for NET cancer is $100 million. That is an estimate I find laughably low. We have spent billions on breast cancer and– while far more people are cured than once were–there is still no certainty that even with early discovery and treatment a patient will live for five years beyond that diagnosis.

…we will have blockbusters of our own.

But even if that $100 million figure proves true, at our current rate of spending we are looking at 20 years before we reach even that figure. I’ll be 80 years old at that point–and I am not sure how much of a Marathon Walk I will be up to then. Nor can I guess how many fundraisers–even with the amount of help I get now–I’ll be able to handle in my 80s.

NET cancer fundraising step-by-step

So we have to squeeze every available fundraiser for every nickel we can over the next few years to try to accelerate the amount of money available not only to fight NET cancer, but to fight all the other cancers out there. As I have been reminded too often this year, there are many other deadly cancers out there preying on people I care about.

We will also sell a range of NET cancer merchandise…

Last year, Walking with Jane sponsored four major fundraisers: a Pasta Supper, a Yard and Craft Sale, a smaller, neighborhood yard sale, and a direct mail campaign. This year, we hope to have between seven and ten–one of which is already winding down–and another of which is less than three weeks away.

Direct mail NET cancer success

Our direct mail campaign this winter has already generated over $6400 for the Boston Marathon Jimmy Fund Walk Campaign. We will do a second direct mail campaign this summer aimed at boosting us to my personal $20,000 goal for that walk. And last week we began gearing up the business sponsorship effort I hope will help push our current total there over $10,000 by the end of April.

Advance orders help us…

But we still need more team members if we are to meet the team goal of $40,000 this year. Ashley Borges joined the team this week, but we still need 38 more people to reach our team size goal.

Of pasta and comedy

The “When is a Zebra NOT a Zebra Comedy Night” April 13 starring John Perrotta–the Italian Don Rickles–and featuring Rockin’ Joe Hebert, will also help raise money for the Marathon Walk Campaign. The event is at the New Bedford Elks Lodge, 23 Sixth Street in New Bedford. This will mark our first effort outside of Westport and Fall River since our attempt at the Greater Taunton Relay for Life seven months after Jane’s death. Tickets are $15 in advance and $20 at the door. You can reserve your tickets through this link. If you are thinking to pay at the door because we will raise more money that way, pay the $20 in advance so I can stop worrying about the size of the audience.

…we still need more team members…

Before the dust settles from the comedy night and the business sponsorship mailing we will be waist deep in the Second Annual Pasta Supper at Westport High School we will co-sponsor with the WHS Key Club on May 2. That event raised nearly $2000 last year–but we are hoping to top $3000 with it this year. It is a major fundraiser for our Greater Fall River Relay for Life Campaign–an effort I’ve had to leave on the back burner while I ramped up the Marathon Walk stuff. Tickets are $10 for adults and $5 for students. You can order tickets in advance through this link. Advance orders help us save money by not over-purchasing food for the event.

Join us for Yard and Craft Sale

Exactly one month later, on June 2, we will hold our Second Annual Yard and Craft Sale at the Westport Grange Hall on Main Road in Westport. Tables–indoors or outdoors are $25. Admission to the event is free for customers and browsers. This event also benefits our Relay for Life Campaign.

So we have to squeeze every available fundraiser for every nickel…

We will also sell a range of NET cancer merchandise at all of these events: shirts, buttons, pins, hats, decals, magnets, bags bracelets and satchels–and anything else we can think of. Some items you can see in our online store, but we have also added a number of new items that will not debut until the comedy night April 13. Prices will be steeply discounted from the store prices since we will not have to ship things.

One step at a time

We have also begun discussions about a bowl-a-thon and a music event for this summer and/or fall. We’ll post more about those as our plans firm up. I’d also like to figure out a silent or live auction at some point. We have a couple of items that might suit that format well in the pipeline. And someone said something recently about a mini-golf tournament–or a real one. We’ll see.

Killing NET cancer is not going to be easy.

All these events are small by comparison to the blockbuster fundraisers of the Jimmy Fund, the Komen Fund, and the American Cancer Society, but while I have some ideas in that direction we are simply neither big enough nor experienced enough to pull those off yet. But “yet” is the operative word.

Sometimes it seems we are funding an aircraft carrier through bake sales. It seems a never-ending task. Yet each of these events builds knowledge and skill as well as raising money to fight cancer. The day will come we will have blockbusters of our own.

NET cancer as murderer

Imagine someone murdered your beloved wife or husband. Imagine spending all day, every day, in close and continuous personal contact with that killer. That is the relationship I have with NET cancer. I can’t put it behind bars. I can’t put it behind me. I live with it every waking hour of every day.

I can’t move on…

And at night, I sleep with it. It haunts my dreams. It is in the bed with me as palpably as Jane ever was. Sometimes it even seems to reach out for me in the night. But there is no love in its embrace–only the memory of death.

NET cancer touches everything I do

I spent yesterday working on American Cancer Society projects. I met with people at Bishop Connolly to go over logistics issues for the Relay for Life of Greater Fall River. Then I went to get my teeth cleaned. While I was there I checked to make sure the people there were joining us again this year for Relay. Then I drove to Boston to lobby for an increase in the tobacco tax so that fewer young people will get hooked on cigarettes—and fewer will die of lung cancer and heart disease.

NET cancer is so far down the totem pole that even $10 matters…

But every conversation—every meeting—took place with Jane’s NET cancer as the backdrop. These were all things we would have done together had she lived. I do them alone—even in a crowd of people—since she died.

My NET cancer breaking point

On the drive back from Boston I wished Jane had died of some other, more well-known, form of cancer—one with large foundations in place that raised tens or hundreds of millions of dollars each year dedicated to curing that cancer. There I could be a small cog in someone else’s machine. I would not have to write fundraising letters or plan events knowing that if they fail it will make a significant difference to the bottom line of what we have to fight this disease with.

I spent yesterday working on American Cancer Society projects.

NET cancer is so far down the totem pole that even $10 matters,  $10,000 is more than pocket change, and $100,000 has a huge impact on what researchers can and can’t do. I sweat our expenses down to the dime: the difference of less than $5 between two printers for posters, tickets and stationary determines which one we use. We pay return postage for donations because the research says more people will donate more money if we do.

The killer is out there

But the struggle wears on me. This winter has been particularly tough. At a point when many widows and widowers have been able to move beyond the memory of death into the memories of the life they shared, I remain stuck in the last four months of Jane’s life—the time we fought daily against her onrushing death, the time her world was shrinking to the size of a diarrhea-soaked hospital bed, the time I could do nothing but hold her hand and remind her who she was, the time we had to say good-bye.

…at night, I sleep with it.

Jane said to me before she went into the hospital for heart surgery that if she did not make it she wanted me to move on. But so long as her killer is out there, so long as that killer is not pursued as aggressively as we pursue breast cancer or lung cancer or prostate cancer or colon cancer, I can’t move on any more than any man can move on while his wife’s murderer runs free.

The quest for NET cancer resources

The work of raising money for NET cancer research has drowned nearly everything else for the last six weeks. The good news is we have raised just over $6000 in that time–a good start for a small foundation with limited reach and resources. But that work is just a tiny piece of the work that has to be done in the weeks and months ahead. Our goal this year is to raise $200,000.

…it is what I promised Jane.

How we will reach that goal is every bit as much a mystery to me now as how we would generate $75,000 a year ago at this point. Eventually, through matching opportunities and other magic we got to just over $100,000–though less than $3000 of it ever saw the inside of our Walking with Jane bank account. The majority of it came from people donating money at our urging to the American Cancer Society, the Dana-Farber Cancer Institute, and the Caring for Carcinoid Foundation.

Curing NET cancer

And that’s fine with me. My goal is less about money coming through our door than money going in the doors of people in a position to do the research and the education that will eventually beat NET cancer. I’m far more interested in a cure than I am in who gets credit for raising the money to fund that cure. I still, however, get excited when I go to the mail box and find envelopes with money in the–and am equally disappointed on the days there is nothing there.

…the first faint glimmerings of a possible cure…

But my focus on the financial side of the research in recent weeks–and months–has put limits on the amount of time I have had to keep up with the research. And the research is much further along than when Jane was diagnosed in August 2010–much further along than when she died December 10, 2010 and I took on this task of working to find a way for others to beat NET cancer in her memory.

NET cancer diagnosis

I got a significant reminder of that progress in reading a paper by Dr. Lawrence Anthony from the University of Kentucky earlier today. His primary purpose is to talk to doctors about the latest treatments for NET cancer but the contents were just as useful in bucking me up about the longterm prospects for NET cancer patients.

For pancreatic NETs we have two new, fully approved drugs…

We have a better ability to diagnose NET cancers of all stripes than we did three years ago. The gallium-68 DOTA octreotide scan I wrote about 18 months ago clearly works better than what we used to have. And there is a 5-HIAA blood test in trials that may one day soon replace the cumbersome 24-hour 5-HIAA urine test. Of course doctors still need to know to order those tests–and we have a way to go where that is concerned–but we are better off than we were.

NET cancer treatments

For pancreatic NETs we have two new, fully approved drugs that, while they do nothing to cure the disease, still appear to slow its progress while alleviating the symptoms of the disease. We have three other drugs and drug combinations that are currently in trials that appear to do similar things for other forms of NET cancer. Peptide Receptor Radionuclide Therapy (PRRT), which has long been in use in Europe, is in trials in the US.

We have a better ability to diagnose NET cancers…

When Jane was in the hospital we were talking about next steps following her heart surgery to get the tumors in her liver under some semblance of control through liver embolization–a technique that really had not been used in NET cancer cases. Today, multiple methods of liver embolization are being used with significant success to alleviate symptoms and debulk liver tumors in patients for whom liver resection is not an option.

NET cancer’s cutting edge

We also seem to have developed a better understanding of cardiac carcinoid syndrome–the piece of NET cancer that destroys the valves in the right side of the heart, as well as developing a better idea of how to deal with carcinoid attacks that follow surgery.

…the research is much further along…

And out on the cutting edge, we have two viruses–one developed here and the other in Sweden–that seem to look at NET cancer cells as a tasty snack. They hold out the first faint glimmerings of a possible cure that may become available for the recently diagnosed before they reach the point Jane was at.

NET cancer’s price tag

The science is making progress. But that progress comes with a financial price tag too few in the private sector seem to want to pick up. So I will keep writing my tin cup letters, running fundraisers, and glad-handing rich and poor alike in the quest to generate the resources we need to kill NET cancer.

Our goal this year is to raise $200,000.

It is what I promised Jane’s doctors. More importantly, it is what I promised Jane.

NET cancer’s twisting knife

I really have to do something about the tenth of the month. It doesn’t matter how the rest of the month has gone, that day remains as jarring as the one on which Jane died of NET cancer. The days on either side of it are no picnic either–but the tenth always finds a new way to put in the knife and twist.

Maybe then I will stop seeing Jane’s end…

March 10 was no exception, though I had hoped for better. It was the day of the annual Boston Marathon Jimmy Fund Extra Mile Brunch–a day the most successful walkers get together to celebrate the milestones of the previous year and gear up for the next. And having learned from last year that this was not an event I should attend alone, I had invited my sister-in-law along.

The solitary table

Then I developed a cold the beginning of last week. While it had begun to ease enough by Sunday that I was not concerned about spreading germs, we decided her driving up with me and returning to her elderly and frail father was not a good idea. So there I was, plate in hand, alone and looking for an empty spot to sit where I could keep some distance between me and my fellow brunchers just in case I was more contagious than I thought I was.

…12,000 people are still going to die of NET cancer this year.

Eventually, I found an entirely empty table and sat down to eat. I was eventually joined by someone else who was there alone as well. We fell to talking–as people do at these things–about the one thing we had in common: why we walk 26.2 miles in a single day to try to bring an end to cancer.

The NET cancer connection

She was a thin woman in her late 40s or early 50s with long, highlighted hair that bounced easily as she spoke about her son’s cancer that had been diagnosed and cured–and how she eventually decided she would do the Walk because of all the children and families who had not been so lucky. She had walked for seven years and last year spent some time walking with a man who had started with the first walk and was still going 24 years later.

“I’ve got IBS.”

Then I started to talk about Jane and NET cancer and the reason I insist–unlike most others–that the money we raise go to NET cancer research because of how little we spend nationally on that form of cancer. As I talked about the symptoms a worried look crossed her face.

The body of NET cancer

“I’ve got IBS (irritable bowel syndrome),” she said. In that moment the room shifted and vanished for me. She told me her doctor thought what she had was Celiac Disease but

that the diet they put her on hadn’t entirely solved her stomach issues. She talked about her insomnia and low blood pressure. At that point I reached into my bag for the pamphlet we printed on IBS and NET cancer. She looked at the flushing symptom and said she still had hot flashes even though menopause had ended for her four years ago.

…why we walk 26.2 miles in a single day…

I told her I was not a doctor but that I thought she needed to go have the 5-HIAA urine test done that checks for excess levels of serotonin. And I told her that, regardless of the outcome of that test, she needs to keep looking until she finds out what was causing her IBS.

The soul of NET cancer

And I tried to give her hope that if she does have NET cancer we know much more about it now than we did 27 months ago. We parted company after the speeches. She left and I sat down. One of the last things she said before she left pin-balled around my brain: that she felt we had been fated to meet that morning so she could hear about NET cancer. For her, that brunch was a positive thing.

…but the tenth always finds a new way to put in the knife and twist.

For me, it was a bag of mixed nuts. I’m always glad when I can find a way to help someone with NET cancer–or who may have it. But in the aftermath I am always back in the hospital with Jane at the end. My heart wants no one to endure what Jane did. But my mind knows we are not there yet–that for all the progress we have made, for the all the treatments in the pipeline and the improved understanding in the laboratories, 12,000 people are still going to die of NET cancer this year. And likely, a similar number will die of NET cancer next year and the year after that. And none of those deaths will be any easier than Jane’s.

NET cancer hope

Still, if we catch the disease early enough and start treatments soon enough, for many of those diagnosed this year we may be able to buy them enough time to make them whole and healthy again. Maybe then I will stop seeing Jane’s end after I leave someone with that specific set of symptoms.

First, the good NET cancer news

There is some good news on the NET cancer fundraising front this week. My personal Jimmy Fund Marathon Walk campaign is rapidly closing in, unofficially, on $5000. That will put me one-quarter of the way to my personal goal of $20,000 for that event.

I made Jane a promise.

At this point, I think reaching $15,000 by September should be pretty straight-forward. I have not yet launched my online effort or started to look for businesses to sponsor our team’s shirts. Combined, those efforts should net another $10,000. But that will still leave me $5,000 short of my personal goal. And that is $5000 I have no idea where will come from as I write this. I’m sure I will figure that piece of it out. I have six months to work with.

We need NET cancer walkers

The larger problem is finding 40 more people to walk on our team. Despite a great deal of effort, we only found about 16 people to join our Caring for Carcinoid/Walking with Jane team last year. And our team total was only a bit more than $19,000 after topping $35,000 the year before.

The goal is to double that ($100,000) this year.

So far, I remain the only person signed up to walk for our team. And while I think $20,000 is not out of the realm of possibility for me personally, raising the $40,000 that is our team goal would mean raising more money than any single person raised a year ago on any team–if memory serves. If I can get to $20,000 that means we only need to average a little over $500 a person if we find 39 other walkers. And that average declines with very walker beyond 40 we recruit.

We can reach our NET cancer goals

And I am fairly certain I have a way to get everyone on our team to raise at least $500. It is the same method I have used to raise more than half of what I have taken in myself to date–so I know the method works.

I’ve dropped off folders to over 80 local businesses…

I have had some nibbles over the last week about the possibility of joining our Jimmy Fund Marathon Walk team–I know a number of folks are thinking about joining us for at least part of the Walk. But no one else has signed on yet. That needs to change–and change soon.

Relay for Life efforts behind NET cancer’s

Our Greater Fall River Relay for Life team has the opposite problem. There we have some numbers–and we are significantly ahead of where we were a year ago in terms of money raised. But our team goal there is double what it was a year ago: $10,000 in 2012 versus $20,000 in 2013. And while we are ahead of last year, we are not that far ahead. A mid-three figure total would worry me less were that event not less than four months away.

I am fairly certain I have a way to get everyone

on our team to raise at least $500.

Part of that has to do with my focus on NET cancer and the Marathon Walk. And part of it has to do with my failure to translate lots of effort on securing corporate sponsorships for the event into solid results. I’ve dropped off folders to over 80 local businesses and so far have managed to recruit one new team–and no new sponsors.

NET cancer fundraising limits

None of this would matter were my goals for this year for Walking with Jane not so high. Last year we generated just over $100,000. The goal is to double that this year. But when I do the math I only see us matching that figure without inventing new ways to raise significant amounts of new money. I’ve personally asked everyone I can find a way to ask–or will have done so shortly.

I have six months to work with.

But I will keep working to figure it out. Too many people die from cancer every year. Too many people are incorrectly diagnosed with something else when they actually have NET cancer every year–and too many people die because of that.

Keeping my promises

I made Jane a promise. I made her doctors a promise. And I made me a promise. Raising the money to find a cure–no matter how difficult it appears at the moment–is easier than watching NET cancer kill someone you love–and much, much easier than being the one dying.

Living the NET cancer dream

In the best of all possible worlds, NET cancer would never killed my wife. We would have had a reliable test for the disease. We would have done the research that would have found a cure. We would have educated doctors to know what to look for, how to diagnose it, and how to treat it.

…people will keep dying of NET cancer…

In the best of all possible worlds, NET cancer funding would never have been a problem–research into even the rarest of cancers would not be a concern. We would not have been eliminated from the federal budget in 1968. It would not have taken until 2008 for us to get that funding back. Drug companies would be more interested in patient fates than in profits. Governments would be more concerned with helping find answers to every killer disease, not just the ones with the biggest constituencies.

NET cancer deaths create 12,000 broken families

In the best of all possible worlds I would have slept beside my wife last night and woke up in her arms this morning. Steve Jobs and Dave Thomas would still be alive–inventing the future or playing with their kids and grandkids. And anonymous patients would not be sitting in bathrooms preparing to give themselves another injection of a drug that will only ease their symptoms, not cure their disease.

We do not live in the best of all possible worlds.

But we do not live in the best of all possible worlds. NET cancer killed my wife. It killed Steve Jobs. It killed Dave Thomas. It killed 12,000 people last year and 12,000 more the year before, and 12,000 more the year before that. And it will kill 12,000 more this year and next year and the year after that. And all of those will be just the people who know they have it. God knows how many more have died–and will die–without knowing the real name of the thing that really killed them.

Hunting the NET cancer zebra

We do not live in the best of all possible worlds. We have no simple test to detect NET cancers. We have a complicated test that will catch one form of the disease–the one that produces excess serotonin–if a doctor thinks to order it. We have an expensive test that will detect some other forms some of the time–but only if a doctor orders it. We have a relatively new type of scan that can see NET cancer–if a doctor orders it. But we don’t look for zebras until everything else is ruled out.

It killed 12,000 people last year…

We do not live in the best of all possible worlds. Drug companies are not interested in drugs without major profit margins. Governments are cutting back on research funds–and make grants only when the outcome is fairly certain in any event. And even then, only if the constituency is big enough to deliver significant votes on election day. NET cancer has no big paydays for the drug companies–and no really vocal constituency.

12,000 empty beds

We do not live in the best of all possible worlds. Too many doctors have still never heard of NET cancer. And too many of those who have, think of it as too unlikely to test for–until it is too late.

In the best of all possible worlds…

So people will keep dying of NET cancer–12,000 who know they have it and uncounted thousands who will never find out. Widows and widowers will keep waking up to empty beds–and children and grandchildren will go on without a mother or a father, a grandmother or a grandfather–all because we don’t live in a perfect world.

Or even a really nice imperfect one.