NET cancer problems at every level

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.

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.

Think –and dress–zebra today

Today is Rare Disease Day. Wear zebra if you have it. If you don’t, then find some.

Do more than wear zebra.

Why zebra? Because doctors are trained to look for horses not zebras when they hear hoofbeats. By that they mean that symptoms are more likely to indicate a common disease rather than a relatively rare one. Most of the time, a bloody nose is just a bloody nose and a cough is more likely from a cold.

Why Rare Disease Day matters

But a cough can be cystic fibrosis. A bloody nose can be a brain tumor. And persistent belly pain and diarrhea can be NET cancer. As the Carcinoid Cancer Foundation puts it, “You can’t detect what you don’t suspect.”

Their efforts often seem puny…

Today, we want everyone to remember that sometimes hoofbeats don’t mean horses–they don’t mean round up the usual suspects. They mean, “I’m a zebra–and I am here to kill you.”

The problem with being a zebra

I watched my wife be kicked to death by one such zebra. By the time we figured it out she had just four months left to live. But she had been fighting that zebra for 30 years while her doctors kept looking for horses. Unfortunately, her zebra was one most had never heard of. We are working to change that.

Fox’s kind of celebrity activism is relatively rare.

But even when there is great awareness of a particular rare disease there is often too little doctors can do to help the patient beyond putting a true name on what they have. Research into rare diseases is rarely well-funded. Drug companies are not much interested in funding diseases they can’t make a profit on. Governments are pressured into funding the big name diseases by their constituencies. Let’s face it: there are more votes in breast cancer, lung cancer, and prostate cancer than there are in NET cancer, neurofibromatosis, and Morsier Syndrome.

Rare diseases and cost-benefit analysis

We hear terms like cost-benefit analysis all the time. They are used to explain why we fund research for this disease but not for that one. But when you have a loved one who is a victim of that line of thinking the idea does not provide any measure of solace.

We hear terms like cost-benefit analysis all the time.

Despite the fact I would not wish any of these rare diseases on anyone, I sometimes secretly wish someone famous would find themselves or their families facing a particular disease too many other families are facing. I look at what Michael J. Fox has done for Parkinson’s Disease sometimes with a sick kind of envy.

Rare disease activism

But Fox’s kind of celebrity activism is relatively rare. Wendy’s founder Dave Thomas and Apple founder Steve Jobs both died from versions of NET cancer. Neither of their fights with the disease has made much difference in the fight against NET cancer. As someone who lost his wife to that particular rare disease, I can understand why they and their families did not get more involved in raising awareness about NET cancer.

I watched my wife be kicked to death by one such zebra.

When you have NET cancer every ounce of your energy–and the energy of your family–goes into fighting what you have. The death can be so horrible at the end the family cannot think about the disease without being drawn back into that whirlpool. I wonder sometimes if my own grief process would not have been better off if I had just walked away from NET cancer after Jane’s death. Working on cancer in general instead would have kept me from daily interactions with the disease and might have let me bury those final memories. Instead, they remain fresh in my mind.

The rare disease bake sales

But that is a road not taken at this point. It is a road many families who lose loved ones to rare diseases choose not to take. They organize bake sales and bike rides and entertainments to raise the money to support research into the rare diseases they are either afflicted with or have a loved one afflicted with. Their efforts often seem puny compared to the massive breast cancer walks that seem to pop up everywhere these days.

I’m a zebra–and I am here to kill you.

But the efforts of those folks as they struggle to raise what amounts to a rounding error on what we spend on the more well-known diseases are anything but meaningless to the researchers struggling to find treatments and cures for these orphans in the storm.

Every dollar counts

In December, I met with Jennifer Chan, who was Jane’s oncologist at the Dana-Farber Cancer Institute. I was there to deliver our final check for last year–a check that took Walking with Jane’s donations to the Program in Neuroendocrine and Carcinoid Cancer to over $49,000 for 2012. I know exactly what it took to generate that seemingly tiny figure.

…doctors are trained to look for horses not zebras…

But I also know just how important that sum is to work on this one rare disease–and how important all the small sums that are raised by small groups of dedicated individuals are to all the researchers who work on the non-glamour diseases that don’t get much press or much attention.

Today is a day to act

Today is Rare Disease Day. Do more than wear zebra. Pick a rare disease–one that doesn’t get much attention–and do what you can to help.

Mourning my mother

My mother died of Alzheimer’s about ten months before my wife Jane died of NET cancer in 2010. When my mother died Jane had already begun the steep decline that would lead to her death and there was little time for me to mourn her passing.

I am in a horrible and lonely race…

And Jane’s death has so overwhelmed me that I have allowed it to obscure my mother’s death and the grief I should feel about it. The truth is, I try not to think about my mother’s death because Alzheimer’s terrifies me–and I saw just enough of how it destroyed my mother to be far more frightened of it than of death itself.

Alzheimer’s beginnings

My mother loved to read, she was a powerful writer, and a woman who enjoyed creating art, whether on stage or on canvas. She kept the checkbook balanced and enjoyed playing with numbers in all their forms. She was a fan of cooking shows because they gave her new recipes to try to new foods to experiment with. There was nothing passive about her—any more than there was anything passive about Jane.

I can imagine no greater torture…

She began her battle with Alzheimer’s in her early 60s—only a year or two older than I am now. Jane noticed something was off about her during my parent’s first visit to our new house, but my father managed to keep us all in the dark until my youngest brother got him drunk enough one night to confess what was going on with mom. Even then, my father worked to keep her at home—until she pulled a knife on him.

Alzheimer’s power

The last time I saw my mother she still knew who I was. My parents had come out to visit my aunt and uncle in New Castle, PA and Jane and I drove down there to visit. But much of the woman I knew had already disappeared. She’d lost her understanding of numbers by then—and with it a substantial chunk of her independence. Cooking requires numbers—as does handling any kind of money. Her patience with anything was long gone.

I understand genetics well enough…

The written word was also beginning to slip away. She no longer wrote and reading was becoming increasingly difficult. Eventually, it all became squiggles on a page—and finally, not even that.

The long knowledge

When he finally was convinced he could no longer take care of her, my father searched out the best Alzheimer’s facility he could find. He visited her virtually every day—except for the periods he was hospitalized because of his kidneys and heart by-pass surgery. People comment sometimes on how much I loved Jane and how well I took care of her. Compared to my father’s treatment of my mother in her last days, I am a miserable failure.

…she knew precisely what was happening to her.

My mother’s battle with the disease was so long and so drawn out that she knew precisely what was happening to her. I can’t imagine not being able to understand numbers—to watch my ability to add, subtract, multiply and divide slowly slip away—and knowing those vital skills were vanishing before my knowing eyes.

The written word

And I expect that it was far worse to lose the power to write and the power to read—and to know those things were going away every bit as inexorably as the numbers had.

Eventually, it all became squiggles on a page…

I don’t want to deal with my mother’s death because it is more than likely my own. I understand genetics well enough to know there is a good chance I carry the same genes that sparked her Alzheimer’s. I know she did crosswords and jigsaw puzzles and number puzzles—all the things that are supposed to hold that nastiness at bay. But it destroyed her, just as it did one of her sisters and one—or more—of my great aunts.

My Alzheimer’s terror

There are a handful of things I am good at: I can analyze, I can think logically, I can learn, I can write, I can speak, I can teach. Those are the tools I have built my life with. Take them away and I can do nothing. Take them away and I am nothing. And the cruelty of Alzheimer’s is that you have to knowingly watch them disappearing—fully aware for years what is happening and completely unable to stop it from happening. I can imagine no greater torture for someone like my mother—for someone like me.

There was nothing passive about her…

I remember visiting my grandparents back in the mid-1970s. They had a next-door neighbor who had lost his wife some years before. He had recently developed full-blown Alzheimer’s but continued to live alone in the house he and his wife had shared. I remember his plaintive howls in the night that no one could comfort. And I worry those will be my howls.

My personal race

There is increasing terror in that memory just as there is increasing terror in the thought of my mother’s death. I am in a horrible and lonely race: will my mind stay powerful enough long enough to help find the answer to the NET cancer that killed my wife—or at least to put together something capable of doing that after I am gone?

My mother died of Alzheimer’s…

I have no answer to that—only the certainty that I have to keep running the race for as long as my body and mind will let me.

NET cancer financial appeal

Most of the time I try to use this space to educate people about NET cancer, Jane’s struggle with it, and what we are trying to do to help find a cure. But twice a year I make a direct, formal appeal here for donations to help us find answers to the riddle that is NET cancer.

I’ll be thankful for your help.

It was cold when I got up this morning. It was cold when I went out to drop off some letters. It will be hot chocolate weather tonight and I will have some while I watch an hour or two of television before retreating to bed.

NET cancer creates widows and widowers

But I will do all of that alone. Since Jane died of NET cancer in December of 2010, I do almost everything alone. I shovel snow, I buy groceries, I clean the house—all things we once did together without thinking about how we would miss even those seemingly inconsequential moments if one of us died.

I hate asking people for money.

I remember August 16, 2010 vividly. It was the day they told us about Jane’s NET cancer—a form of cancer her doctor had never heard of—and her first oncologist had never seen. There was nothing average about her cancer. There was nothing average about the days leading to her death. And there has been nothing average about the days since.

Only one way to kill late stage NET cancer

No one had ever beaten late stage NET cancer, but Jane was determined to be the first. In the end, she beat it the only way anyone ever has—by dying and taking it with her. We would have tried anything, but the truth is there was nothing to try except a series of operations with very long odds of success.

Cancers viewed as zebras get little funding respect…

We tried anyway. And her doctors told me when it was over that they had learned a lot from her case—but even more from her indomitable spirit.

The NET cancer zebra

We know a lot more about NET cancer than we did when Jane was diagnosed. But we still have no cure. We still have no reliable way to diagnose the disease. And the average primary care physician knows as little about it as Jane’s did. They call NET cancer a zebra—a disease more likely to show up on TV’s House than in an actual practice.

…we still have no cure.

But there are 120,000 people in the US who know they have the disease—and no one knows how many more have it and will never know, even as it kills them. It looks like so many other diseases that the average NET cancer patient is incorrectly diagnosed three times before someone gets it right.

The finances of NET cancer

Jane was misdiagnosed seven times and was seeing the doctor about what looked like a fluid retention problem when they finally got it right. She could just as easily have been told she had heart disease and have that on her death certificate instead of the real cause.

No one had ever beaten late stage NET cancer…

Cancers viewed as zebras get little funding respect either. Last year, about 12,000 people were diagnosed with NET cancer in the US. Total spending on NET cancer research amounted to less than $5 million. About 12,000 cases of cervical cancer were diagnosed last year. The American Cancer Society alone budgeted over $16 million for research on that. They spent about $1 million on NET cancer.

But while about 12,000 people died in 2012 of NET cancer, only 4,220 died of cervical cancer.

My tin cup is out there

I hate asking people for money. I’d like to resolve all our research needs with the stroke of a pen. But I am not financially rich and–barring I hit the lottery—I’m not going to be.

I remember August 16, 2010 vividly.

So I’m here with my tin cup to ask for your help. I’ll promise you this: All the money Walking with Jane raises will go to finding a cure for NET cancer and educating doctors about it or to the American Cancer Society to research all cancers and help support cancer patients and their families as they fight the long lonely battle against cancer. You can choose where what you donate goes.

The NET Cancer Walker

And whatever walk I am on–whether the Marathon Walk or the Relay for Life–I’ll be thankful for your help.

It was cold when I got up this morning.

To quote Helen Keller: Alone we can do so little; together we can do so much.

Pax et lux,

Harry Proudfoot

Chairman, Walking with Jane, Inc.

Walking with Jane, Inc. is a 501(c)(3) non-profit charitable corporation

organized under the laws of the Commonwealth of Massachusetts.