NET cancer and Death’s quiver

I have had a pretty dark few days on both the NET cancer and life fronts. Saturday I attended a memorial service for a former colleague and friend who died of brain cancer. I drove down with a former student who was one week out of the hospital following complications with her own cancer problems. I was bombarded all weekend with the certain knowledge that life is fleeting and uncertain.

We have no choice…

And yesterday reminded me about how little we seem able to take even the NET cancer arrow from Death’s quiver.

NET cancer research funding

I had lunch yesterday with Ron Hollander, the director of the Caring for Carcinoid Foundation. We talked about a number of things that were very encouraging: the progress of the Dana-Farber NET cancer genome project, the positive reaction of someone at CBS news to the PSA scripts on NET cancer I wrote a few weeks ago, some ongoing work at Johns-Hopkins in Maryland, the dovetailing of a drug currently in trials with a newly discovered pathway in NET cancers…

Next year’s target is $156,000.

But then the conversation turned to the question of money–and there the news was less calming. At one point, Ron called total funding for NET cancer “barely a rounding error” on what we spend on breast cancer. CFCF’s goal, he said, was to double what they raised this year next year. He told me they were close to negotiating the same two-for-one matching opportunity they closed last year with–and hope  to be able to put together a second matching program later. He talked about a number of small groups doing fundraising similar to ours–walks, dinners, golf tournaments–and all those small efforts do add up. By the end of December CFCF will have raised about $1.25 million.

CFCF’s portion of NET cancer fight

That’s not bad for a small foundation with a full-time staff of three operating out of an office only slightly bigger than my bedroom. The foundation pays no salaries–those get picked up by the board of trustees–so all the money they raise goes straight into the NET cancer fight.

That amounts to $2.5 million.

But that small foundation provided more money for NET cancer research than anyone else in the country–including the federal government–last year.

WWJ’s NET cancer fight

Walking with Jane has a full-time staff of one–me. I pay myself nothing and we operate out of a room in my house. So whatever we raise goes straight into the fight as well. This year we expect to raise or generate somewhere between $73,000 and $93,000. The lower figure is just under double what we raised or generated a year ago.

…an office only slightly bigger than my bedroom.

Next year’s target is $156,000.

And I have no idea how we are going to get there without even more help than we had this year.

NET cancer needs more than money

Ron wants to double what CFCF raised this year next year. That amounts to $2.5 million. CFCF is going to need lots of help getting there as well

But even if we both reach our goals, what we spend on NET cancer will still not amount to a rounding error.

“barely a rounding error”

We both agreed we need more people to be aware of the disease. We both agreed we need a big name to come forward as a spokesperson. We both agreed we need to have bigger–and more visible–events.

All three of those leave us at the mercy of others right now. When the biggest foundation in terms of income has a total full-time staff of three, running a medium-size amateur golf tournament is about the limit of what we can handle, assuming we can find enough volunteers to fill in the holes.

No NET cancer alternative

Of course the alternative is to do nothing more than we are doing now. But 33 people died today of NET cancer. Tomorrow, another 33 will die of it–and another 33 the day after that.

…life is fleeting and uncertain.

Doing what we are doing is not an option. Walking with Jane will figure out how to raise $150,000 next year. CFCF will figure out a way to raise $2.5 million.

We have no choice: NET cancer patients are counting on us to find the money to save their lives.

NET cancer ‘Zebra Movement’

NET Cancer Awareness Day is tomorrow as I write this. This is the third year in a row the NET cancer community has picked one day to really try to get the rest of the country to focus on this nasty piece of work that is NET cancer. There is an effort to get the entire NET cancer zebra herd to come together in a series of events designed to draw attention to the disease.

…the fight to kill NET cancer is an everyday affair.

Walking with Jane had hoped to launch its second Press Package tomorrow as part of that operation. Cancer in several of its other guises has stomped the life out of that idea. We will aim for December 10, the two-year anniversary of Jane’s death, instead. That’s the problem with life sometimes: you can plan whatever you’d like, but someone gets sick or someone dies or a storm comes uninvited up the coast.

But we are still trying to get everyone to turn Facebook into a giant zebra herd by replacing their profile picture with a zebra-themed picture.

The double meaning of NET Cancer Day

NET Cancer Awareness Day falls each year on November 10. It is a date that is particularly hard for me. November 10 is the last day before the madness that was Jane’s death arrived. We went to bed that night believing the next day’s trip to Dana-Farber would be routine. We would drive to Boston, I would drop Jane off at the door, park the car, meet her in the lobby, and go upstairs. There we would check in, have her blood work done, see Jen Chan, get the monthly Sandostatin injection and head home. The only thing out of the ordinary was supposed to be a short meeting with a dietician.

There was nothing left to try.

But drawing blood was more difficult than usual and Jen was concerned about the amount of fluid in Jane’s abdomen. After Jane’s injection we met with the dietician–who was worried about Jane’s albumin level. When she left and Jane got up we discovered she was still leaking clear fluid from the injection site. I wanted to have someone check on that, but Jane just looked at me and said she just wanted to go home. She had that expression on her face that even I could not say “no” to.

NET cancer surgery preparations

The drive home took over four hours. The traffic was backed up for miles. And when we finally got home I had to carry her up the stairs for the first time. I called in sick to work. It was an in-service day, but even had it not been, I would not have left her alone.

The drive home took over four hours.

The phone rang the next morning. It was her heart surgeon. They wanted to schedule the heart surgery for Monday and wanted her there Sunday afternoon. Saturday, November 14, was the last night we slept in the same bed. We had said our “just-in-case” good-byes that afternoon. Sunday, I had to help her off the toilet before we left for Boston.

NET cancer’s heart damage

Had the surgery come even one day later, I do not think she would have made it to the operating table. The six-hour operation lasted 10 hours. The damage to valves in her heart was much greater than expected.

It is a date that is particularly hard for me.

But she was a trooper. She came out of the anesthesia two hours before the expected her to. The heart healed. But the carcinoid attacks kept coming, suppressing her breathing and her blood pressure. December 9 we both stopped fighting. There was nothing left to try. December 10, she died.

The empty space

I am in no mood for a zebra party tomorrow. I want to do something to raise lots of money and make a real difference. But these months from August through December are increasingly difficult. I never finish a to-do list and the tears spring too easily to my eyes.

NET Cancer Awareness Day is tomorrow

I lost a friend last week to brain cancer. His service is tomorrow. Either before or after I will visit Jane’s grave. I will think about the might-have-beens. Then I will come down the hill to the house we built together and begin again this work before me.

For the world, NET Cancer Awareness Day comes once a year. For some of us, though, the fight to kill NET cancer is an everyday affair.

Keeping NET cancer and politics separate

In this battle against NET cancer I try to keep politics to a minimum. I wear a Walking with Jane button on my hat or on my jacket wherever I go. But Tuesday I volunteered to hold a sign at a polling place, so the button came off.

My wife is dead as a result.

NET cancer is not a Democratic issue or a Republican issue. NET cancer is a human issue.

What I need to write about tonight, however, requires me to encourage some small political action on the part of all of those who care about NET cancer.

NET cancer and the fiscal cliff

Over the next several weeks the Congress will work to resolve the tax and budget issues that constitute what people call the fiscal cliff. January 1 is the day both the Bush tax cuts expire and the sequester goes into effect. People say the combination of these two events will be disastrous for the country as a whole.

The best thing for us may be if the sequester never happens…

It will certainly be disastrous for cancer research in general—and NET cancer research in particular. The sequester calls for a ten percent cut in the budget for the National Cancer Institute. That is the group that dispenses federal money for cancer research.

Cutting NCI’s budget

I very much doubt the NCI will simply cut all its programs and grants by 10 percent. Rather, it will look at the programs it has and determine which should continue to be funded—and which should not.

NET cancer has been chronically underfunded…

After 40 years of nothing, NET cancer finally has funding from NCI for two projects. My fear is those grants will be among the programs eliminated when NCI has to find things to cut. NET cancer has been chronically underfunded for decades. Every dollar counts for us.

NET cancer, NCI and Congress

The best thing for us may be if the sequester never happens—but only if we can convince Congress to make cancer research immune from the cuts that are coming.

The sequester calls for a ten percent cut…

So I am asking each of you to write to your congressman and your senators. I am asking each f you to ask them to find a reasonable compromise in the face of this fiscal cliff—and that any compromise they do reach finds a way to protect funding for cancer research in general—and NET cancer in particular.

And I am asking that you write a similar letter to the head of NCI asking for ongoing support of the two NET cancer grants regardless of the sequester.

Counting NET cancer’s human cost

We sacrificed 40 years of progress the last time we faced cuts at the federal level.

NET cancer is a human issue.

My wife is dead as a result; Sunny Carney is dead as a result; more than 400,000 others are dead as a result; and at least 120,000 others are currently at risk as a result.

We need to make the people in Washington pay attention. We need to protect NET cancer funding.

Sunny more than a NET cancer number

There has been a tremendous outpouring of grief and support from the NET cancer community for Sunny Jennings Carney‘s family since her death Saturday. And nothing I am going to write today is intended in any way to detract from that support. Sunny’s work over the last ten years in trying to put a human face on this disease has certainly earned every tear being shed and every ounce of support her family will receive in the days ahead.

Let’s kill NET cancer

But Sunny’s was likely not the only death from NET cancer Saturday. On the average day 32-33 people who have been diagnosed with the disease die of NET cancer in the US. That is 230 people every week, 1035 people a month, and about 12,000 every year, roughly the number of cases that are diagnosed.

NET cancer’s human toll

Most of those people had husbands or wives or partners; many had children; and most had living parents. Their families endure the same grief that Sunny’s family is enduring right now. They have struggled with many of the same medical decisions and financial problems.

…money is in short supply for NET cancer research.

All of them faced the same grim reality: we have no cure for this cancer unless it is diagnosed so early that it is virtually undetectable. Then a relatively simple surgery offers the chance of a cure. Otherwise, the only option for killing this cancer is to die and take it with you. We can delay its progress. We can try to address the crippling symptoms and make them more bearable. But a cure is beyond us.

NET cancer: the orphan

Breast cancer patients, lung cancer patients, colon cancer patients, prostate cancer patients all know that everything is being done every day to find a cure for their disease.

NET cancer patients wish that were the case for their cancer. It is not.

We need a simple, reliable, inexpensive test…

The Caring for Carcinoid Foundation estimated earlier this year that finding a cure for NET cancer will cost $100 million. Last year, total funding for NET cancer research was less than $4 million, barely enough to fund a Phase I trial of a single drug or drug combination. At that level of funding we might stumble on a cure about 25 years from now, assuming funding keeps pace with inflation.

We need more than a cure

But even with a cure we face the mammoth problem of diagnosis. The average NET cancer patient is misdiagnosed three times before the get a correct diagnosis. And we have no idea how many people die from NET cancer and its complications who are never diagnosed at all. Some have suggested that number could be as high as 3,000,000.

…a cure for NET cancer will cost $100 million.

We need a simple, reliable, inexpensive test that will consistently detect NET cancer in its earliest stages. The 5-HIAA urine test is cumbersome at best, though a new blood test to detect those molecules is in development. But neither test will detect carcinoid tumors that excrete a hormone other than serotonin. The Chromagranin A blood test has a bit broader scope, but is very expensive to do, and not as easy to interpret as it might be. The development of better diagnostic tools needs to be another item high on our research agenda.

NET cancer and the economy

But research costs money–and money is in short supply for NET cancer research. That may be about to get worse, regardless who wins today’s election. The sequester that hits January 1 will cut the National Cancer Institute budget by 10 percent. The NCI currently funds two NET cancer research projects. The last time NCI faced similar cuts NET cancer lost all federal funding for 40 years.

All of them faced the same grim reality.

Income for most cancer organizations has flattened this year. The American Cancer Society, for example, saw an overall decline in moneys from its Relay for Life program. They fund NET cancer research to the tune of about $1 million a year–more than one-quarter of the total spent nationally on research last year. And given the ongoing weakness in the economy–and a possible slowdown if things really go south in Europe–individual giving may go into decline as well.

My NET cancer pledge

But the NET cancer community cannot afford to give up. Since Sunny’s death on Saturday, about 100 more people have received a NET cancer diagnosis. Another 100 have died of a diagnosed NET cancer. And God alone knows how many more have died without knowing NET cancer killed them.

On the average day, 32-33 people who have been diagnosed with the disease die…

Saturday is NET Cancer Awareness Day. I will renew my pledge that day to work to kill this disease. I hope you will, too.

For Jane, for Sunny, for all those who have suffered or died from the effects of this disease, and all those it seeks to claim in the future, let’s kill NET cancer.

NET cancer’s patient voice

The NET cancer community lost one of its most powerful and influential patient voices on Saturday. Sunny Jennings Carney ended her NET cancer journey the way nearly all those with it do: they kill their cancer by dying and taking it with them.

We will build on the foundation of your concrete footprints.

But Sunny was more than a statistic in the long, unheralded war against NET cancer. Through her blog—recognized earlier this year by the Carcinoid Cancer Foundation as one of the top five in the US on the subject—her book, The Sunny Side of Cancer, and numerous stories about her and her struggle in Pittsburgh area media, she succeeded in putting a human face on what, for most, is an anonymous cancer even doctors do not recognize when they see it.

An inspiration

She also inspired others with the disease, whether she met them in person or only through her blog. Too often, patients are passive in the presence of their doctors. For some diseases, this may make sense. But NET cancer patients need to be proactive. They have to become their own advocates. With very few exceptions, NET cancer patients know more than their doctors about this disease and the latest treatments and thinking.

…it is hard to believe she is gone.

Sunny inspired other NET cancer patients to be pro-active about their disease, not only through her writing but through personal contact as well. Next month, as part of our press package, we will publish a story about a woman from the Pittsburgh area that Sunny took under her wing when the woman was diagnosed with NET cancer in her lung. It is a moving story.

Final entries

Despite her failing health, Sunny continued to post on her blog well into October. Reading those entries, it is hard to believe she is gone. Her voice is still strong in them, though the imagery makes clear she is facing problems.

Sunny inspired other NET cancer patients…

At one point she talks about the footprints she will leave behind: “I don’t want the footprints that I worked too hard to make (to) get washed away by a wave.” She wanted her footprints to be concrete footprints and, to that end, she asked others to, “Leave some footprints for me. Continue this journey.”

Moving forward

Those words recall again to me what Jane said when she was in the hospital at the end: “Keep moving forward.”

Sunny was more than a statistic…

Sunny, we will do more than leave some footprints for you. We will build on the foundation of your concrete footprints. We will keep moving forward. We will keep raising awareness. We will keep working for a cure.

And some day, NET cancer patients will have another option for killing their cancer than dying.

NET cancer not only foe

Everyone who reads these posts—or who visits this website—knows I have good reason to hate NET cancer. But I hate cancer in general with equal fervor. I work harder on NET cancer because it took my wife—and because NET cancer gets so little money and attention in the wider world.

Research is the key to it all.

My work with the Fall River Relay for Life grows out of my hatred of cancer generally. The money we raise there does little for NET cancer–and little to raise awareness about NET cancer. But both my sister and sister-in-law are breast cancer survivors. I have former students and colleagues who have battled that, as well as friends who have fought—or are fighting—cervical cancer, uterine cancer, ovarian cancer, non-Hodgkins lymphoma, melanoma, brain cancer, testicular cancer, lung cancer, kidney cancer, bladder cancer, leukemia, colon cancer, stomach cancer, pancreatic cancer, prostate cancer…

You get the general idea. Sometimes I think that if there is a cancer I have known someone with it.

Another loss to cancer

Last night an old friend and former colleague succumbed to a brain tumor. He’d had two or three other cancers before that, but the brain cancer is what finally killed him. The last experimental treatment option failed about two months ago—and he had come home to die.

I hate that option…

David and I both wanted to create better schools. We disagreed—sometimes vehemently—about how to make that happen, but we never lost respect for each other in the process and we usually found a compromise that worked.

Cancer does not compromise. You either fight it with everything you have or you lose for certain. Even when you fight it with every weapon you can find it, still, too often, takes your life.

The death option

David and Jane both fought their cancers with every option they could find. In the end, they both killed their cancers the only way they could—by dying and taking it with them.

I hate that option—but too often it is the only option that works. Sometimes—with NET cancer and too many other cancers—it is an option we reach too quickly. And sometimes, it is the only option, period.

Cancer does not compromise.

That’s where we were 60 years ago with childhood leukemia. Today, we can save 90 percent of those who come through the door with that form of cancer.

Forty years ago, that is where we were with breast cancer. Today, too many still die from the disease, but it is not the absolute death sentence it was for the vast majority in the early ‘70s.

Searching for a cure

I cannot predict when we will begin to see real light for brain cancer or NET cancer patients. I know we have made significant progress in understanding both in recent years. But when those new understandings will present us with a cure—or even the beginnings of a cure–is anyone’s guess.

It took 40 years before Sidney Farber’s work on childhood leukemia even started to turn the corner. It may be an equally long time before we start to get a handle on either of these.

I hate cancer in general…

Or it could happen tomorrow. I have not studied brain cancers the way I have NET cancer. I don’t know if there is something similar to the oncolytic virus I have talked about here in recent weeks for brain cancers. I can’t even say the oncolytic virus will even work on NET cancer.

Research is the key to it all. Research will find a cure for brain cancers. Research will find a cure for NET cancer.

Life, death and NET cancer

My wife’s sister came over this morning to help me clean out Jane’s armoire and one of her closets. It was a physically and emotionally wrenching experience that served to remind me of both our past–and the future her NET cancer stole from us.

We were about 30 minutes into the armoire when I found the two sweatshirts. One had the Australian flag on it, the other the flag of New Zealand. Though she had never been to either, we both dreamed of going there after we retired.

…we are going to kill NET cancer…

Some day, perhaps, when I am done with fighting to help find a cure for NET cancer, I may take that trip. I’ll see the Sydney Opera House and the Great Barrier Reef. I’ll walk the mountains where the Lord of the Rings was filmed and do all the other things we talked about.

The needs of NET cancer research

But the way things are I can’t bring myself beyond the perhaps and the may. My time is not my own. What money I have is committed to this more serious quest. I cannot even bring myself to think about buying a car despite the 100,000-mile mark that is approaching too quickly on my Focus’ odometer. NET cancer needs the money more than I need a new—or even a used—car.

It is not a good feeling.

My current car runs. It gets me where I need to go. New wheels can wait. Australia and New Zealand can wait. Jane is gone and so many of our dreams are gone with her. I don’t think I could look at the things we wanted to see there and be happy in her absence. I feel cheated and angry and hurt.

NET cancer’s wergeld

After my sister-in-law left, I walked back into the room we had been working in. The armoire was empty and I had closed it earlier. But we had only gotten through about half of the closet. It was still open and I could smell Jane’s scent in the room. I put my head down against the clothes bar and howled for about 20 minutes.

I feel cheated and angry and hurt.

My mind went away as it has so many times these last two years. I feel better for a while afterward—but even though I am alone I feel embarrassed by it. I am, for that space of time, a three-year-old throwing a temper tantrum—a mindless creature caught in rapids that overwhelm everything. It is not a good feeling.

Dreaming NET cancer’s death

I took the things we had boxed and bagged to a local charity group. They will make sure they all get good homes with people who need them. There were sweaters and winter coats and scarves as well as blouses and pants and sweats. The new owners will not know the stories behind each one, nor how and why they have come to them. And that will be a good thing.

I may take that trip.

And some day, I will, if I am not too old and decrepit, fulfill our travel dreams. And that, too, will be a good thing.

But first we are going to kill NET cancer—and that will be the best thing of all.

The irony of NET cancer

That Jane’s final struggle with NET cancer came in October, November, and December has a nasty irony to it.

Halloween was one of our favorite holidays, as were Thanksgiving and Christmas. In truth, they were our three of our four favorite days of the year. Only our anniversary meant more to us–and it really launched the season, falling on September 2.

 I won’t stop…

But Halloween was especially uplifting for us both. We would start setting up the windows and the yard early in the month. Just before Halloween she would choose a design and trace it onto the pumpkin I had either grown in the garden or we had picked out at some farm stand.  That afternoon we would put out the gravestones she had made and prepare the candy and our costumes.

Net cancer as goblin

Jane loved to see the little ones in their costumes as we handed out the candy. She would tell them how scary or how cute they were. Whether it was the first trick-or-treater of the night or the 200th, the enthusiasm never left her voice.

Jane’s last two Halloweens were difficult for us. In 2009 she was recovering for the H1N1 flu and the pneumonia that followed quickly on its heels. I handled the candy duties, but she sat at the top of the stairs watching and handing out compliments through the night.

 She came home in a hearse…

She could not do even that a year later. The NET cancer had ravaged the valves in the right side of her heart by then She had to keep her legs elevated and there was not space at the top of the stairs for the love seat or couch she was largely confined to by then. Sometimes she would get up and look out the window if I told her there was a particularly neat costume coming down the street. Sometimes when I came up the stairs to refill the candy bowl I could see the gleam in her eyes and knew she had been fighting off the tears.

NET cancer’s endgame

By the time her birthday arrived in mid-November she was already in the hospital. She had fought off the first carcinoid attack the night before. A carcinoid attack is always a concern with NET cancer, especially after surgery. But she survived it–and joked with the doctors and nurses that she had gotten a new heart for her birthday. A week later she was in a coma.

…the NET cancer dealt us a quick, cruel blow…

But she woke up in time for Thanksgiving–and neither of us was ever more thankful than on that day. There was no turkey and stuffing. She ate some chicken broth and I had a bowl of pumpkin soup. We both thought she had turned the corner.

But the NET cancer dealt us a quick, cruel blow that Friday night. She became delirious, then drifted back into a coma early Saturday morning. I seriously thought about letting her go then, but her doctors had one more thing to try–and we had sworn we would do everything we could to beat this thing.

Jane’s last NET cancer battle

And what they tried–massive doses of octreotide designed to break the carcinoid attack for good and all–worked. Jane woke up and got stronger every day. They put in a pacemaker to help her heart keep rhythm. Her blood pressure rose and stabilized. We talked about her leaving the hospital by Christmas for rehab. I could not think of a better Christmas present for either of us.

…the enthusiasm never left her voice.

She came home for Christmas–but not in the way we had hoped for. She came home in a hearse and we buried her seven days before Christmas.

I promised her I would put up a Christmas tree, and I did. I put the ornaments she had made over the years on it.

And I promised her I would keep fighting NET cancer–keep fighting it until it was dead.

The NET cancer vampire

This afternoon, I will finish putting up the Halloween decorations.

Halloween was one of our favorite holidays…

Tonight, the little ghosts and goblins and witches will come up the concrete stairs to the door. I will tell them they are cute or scary as I add a bit more candy to their collection. And tomorrow…

Tomorrow, I will continue the fight against the vampire they call NET cancer—and I won’t stop until I have put a stake through its heart and reduced it to dust.

What has changed about NET cancer?

I’ve written nothing about NET cancer for a week. I’ve posted no new NET cancer links in that time either. I cannot say I have not thought about the subject, but this has been a week of trying to push everything away. My mind has had enough of cancer of all types–but especially enough of NET cancer.

I’m feeling overwhelmed lately.

I will admit to feeling some guilt about this. In the world of NET cancer little has changed. Most people still have never heard of it–including far too many doctors. We are no closer to a cure. The funding problem is no better than it was. For more than 26 months I have labored in this vineyard, seemingly to little effect–in my mind.

NET cancer: words, words, words

That is not to say that others do not think otherwise. I heard again this morning from someone about how proud Jane would be of the progress we have made and the difference we are making on so many fronts. I wish I could see the world through the eyes of the people who see all that.

I want NET cancer dead

I can’t.

I know too much. I know too much about NET cancer. I know too much about NET cancer research funding–or rather, the lack of it. I know too much about NET cancer research and how slowly it moves compared to research on so many other forms of cancer. I know too much about the hurdles even the most promising pieces of research face on the road to becoming  standard practice–and I know too well how many years stand between us and a real cure given even ideal circumstances.

NET cancer’s circumstances

And the circumstances we face are less than ideal. The Oncolytic Virus funds at Uppsala and iCancer have combined to raise a mere $150,000 in the nearly two months since their founding. It sounds like a lot of money, but is less than 10 percent of what a simple Phase I trial will cost–and less than five percent of the cost of a really good Phase I trial will need. Some would say that is the most promising lead we have, but even with the money in place there will still be ethical and governmental hurdles to clear before that trial can even start.

I know too much.

In the US, the fiscal cliff that looms in January will cut federal cancer spending by 10 percent. I know better than to think that cut will be divvied up evenly. The major cancers will not be cut. NET cancer and its “unimportant” brothers and sisters will bear the brunt of the shortfall. And that will be true even if some “Grand Bargain” is reached.

I trust neither party to do the right thing where NET cancer is concerned. I do not trust the “free market” to come up with the money for NET cancer either. There is too little profit in it.

In memory yet green

I won’t give up the fight. I’ve always found myself fighting for what others saw as lost causes. And I made my wife a promise about this disease. But sometimes it all gets to be too much. That is especially true in the fall of the year when everything conspires to remind me of Jane’s last days. Even now, if I close my eyes, I can see her lying on the couch, I can see her steeling herself for the next self-injection, I can see the tears in her eyes every time she realized there was something else she could no longer do.

My mind has had enough of cancer…

I’m feeling overwhelmed lately. My sword-arm is tired but my enemy looks as fresh as when we started. I’m frustrated and angry and tired of waiting.

I want NET cancer dead–and I want it dead now.

Funding NET cancer research

While the news on the NET cancer research front was very good at last week’s Dana-Farber Cancer Institute Gastrointestinal Visiting Committee meeting, the financial outlook was far less upbeat. We spent a good chunk of our working lunch talking about funding issues given the rapidly approaching fiscal cliff and what may turn into a weakening global economy.

I heard for years how money did not matter.

The more we talked, the more I felt like we were potentially looking at 1968 all over again. That year, faced with a budget crunch, the federal government decided

to eliminate all funding for what it saw as minor cancers. On that list was NET cancer. The next time that disease saw any federal money was 2008. Today there are two federal grants helping fund NET cancer research. They are not large, but they are there. That funding sends a message to other funders, however, as well. If it is important enough for the National Cancer Institute to fund, their reasoning goes, it may be important enough for us.

I would not bet on a cut of less than 10 percent…At current funding levels, only seven percent of all grant requests end up being funded at the federal level. Under the sequester the House and Senate agreed to in August 2011 as part of the budget ceiling deal, spending on cancer research faces a potential 10 percent cut in next year’s budget. Depending on the election and what kind of deal a lame-duck session of congress works out in the waning days of the year–if it works out anything at all–cancer funding could do better, worse, or stay where it appears to be under the sequester.

But when other cancers get a cold, NET cancer gets pneumonia. Our resources are so slender that any kind of loss of resources can set us back years.

I would not bet on a cut of less than 10 percent–and I don’t think many people in the room Friday would bet on it either. That 10 percent cut would more than wipe out all of the gains made in federal research funding at DFCI since 2003. To say there has been little growth in federal spending over the last ten years would be damning with faint praise. The increases have not even come close to keeping pace with inflation. And I would be very surprised if NET cancer research funding from the government would survive a 10 percent cut.

Inside the DFCI numbers

DFCI’s operating expenses have more than doubled over the last 10 years–as has the number of patients treated in a year. A just-completed capital campaign–and a substantial increase in philanthropy income as a result–has helped the Institute continue to expand its research footprint. But the ongoing weakness in the economy has people worried about whether those numbers can be sustained. Private support for DFCI was virtually flat this year–and giving by individuals was down about one-sixth: down over $9 million. Fortunately, corporate giving was up almost the same amount, but if the economy were to weaken substantially it is not clear that could be maintained. As both I and others have written, we do not lack for ideas when it comes to cancer research; what we lack are the financial resources to investigate every avenue that needs to be investigated.

That funding sends a message to other funders…

And nowhere is that more true than in the gastrointestinal cancers in general–and NET cancer in particular. All these cancers are difficult to detect–and traditional approaches to research and treatment don’t seem to work very well. The best answer we have is early detection and surgery in most cases. Later detection leaves us relegated to trying to slow the disease down and managing end of life care. As I wrote yesterday, there are lots of interesting ideas on the table growing out of a better understanding of the way the genomes of these cancers work–and not just for NET cancer.

As an educator, I heard for years how money did not matter. It was not true in education–and it is certainly not true for cancer research in general–or NET cancer in particular.