Not a rock, but a mountain

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.

Of hummingbirds and NET cancer

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.

Awareness vs. Research

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…

That all sounds crazy. And it is. We all know better. Yet we engage in those behaviors in exactly that way: even people who should know better. How else to explain that one of the biggest breast cancer charities spent $2.2 billion on awareness and patient education campaigns–and only $77 million on actual scientific research over the last six years?

The NET cancer survivorship folly

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.