NET cancer and the long walk
NET cancer is never far from my mind under any circumstances. But given the nature of what I was doing yesterday–the dress rehearsal for my Marathon Walk effort started at 6:40 a.m. and continued, with a break for lunch, until nearly 5 p.m.–I spent a good deal of time thinking about it and about what we are trying to do through Walking with Jane.
Our Marathon Walk t-shirts are printed.
And what I thought was both mind-bendingly depressing and exhilarating.
Those of us dealing with NET cancer tend to be an insular group. That is not surprising. Not only is NET cancer considered a rare cancer but it is also a cancer that acts very differently than almost any other form of cancer. A garden-variety cancer is usually pretty aggressive–and that aggressiveness can be used against it in a variety of ways. Both chemo and radiation therapies are aimed at cells that are growing more rapidly than those around them. That aggressiveness also makes many cancers easier to detect in their early stages when they are most curable.
The isolation of NET cancer
But while NET cancer may make other cancers more aggressive–as I have suggested elsewhere–it is, itself, rather indolent. It grows at about the same rate as the cells around it, making traditional cytotoxic therapies ineffective at best–and harmful at worst. Its symptoms are easily confused with those of other, somewhat more common, illnesses. More than 100 years after the disease was first described we still have no simple, reliable way to detect it.
I find that thought truly exhilarating.
The 5-HIAA urine test works pretty well, if the patient’s tumors are producing seratonin, but collecting urine for 24 hours is no picnic for the patient–and the test doesn’t do much good if the tumor is producing some other hormone–or none at all. The chromagranin A test is better, but the test is expensive and–some claim with no evidence I have seen–prone to false-postives. Getting a primary care doctor to order the test is difficult.
NET cancer as backwater
NET cancer patients have their support groups and their advocates, but I sometimes feel we are a backwater well outside the concerns of the major cancer research organizations. There are literally tens of thousands of people working on lung cancer and breast cancer. We spend hundreds of millions of dollars on them. By contrast, I would guess there are fewer than 200 people working full-time on NET cancer on the planet. And the amount we spend on it is pathetic. No wonder the main weapons in our arsenal were originally designed to do something else. Octreotide, for example, was originally designed to ease the suffering of chemo-therapy patients.
Getting a primary care doctor to order the test is difficult.
And money is going to continue to be tough to come by. The federal budget is a shambles–and regardless who gets elected in November NET will remain a homeless orphan where the US government is concerned. The major cancer organizations will continue to focus their attention and money on the “bigger” cancers.
Fundraiser’s limitations
In the last 18 months I have begun to realize the limits of my own fundraising prowess. My personal goal was to raise $76,000 in 2012. My current projection is about $54,000 despite working on this a minimum of eight hours a day seven days a week. That would still be a $16,000 improvement over last year–and to my friends and I $50,000 is no small amount of money to have raised. But in the face of the millions needed, it is clear I made the wrong choice of profession in the 1970s–and the wrong choice about where to practice it in the 1980s and beyond.
The 99 percent and the NET cancer battle
My friends are school teachers, book-keepers, shopkeepers, small business people, farmers, lawyers, policemen , firemen and mechanics. They pay mortgages and raise their children. They don’t have summer houses or more cars than family members. They are common, everyday people who wonder how they will afford to retire and what they will do if someone in the family gets really sick.
My students were not, by-and-large, destined for great wealth. They, too, do the work of the world, scrimp to save up the down payment on a house, and figure out how to pay the bills that come in every month.
I sometimes feel we are a backwater…
I love my friends and my former students. Every day they work to do something meaningful with their lives. And when I ask for their help with a fundraiser or ask them for a donation, they give whatever they can. I got a $10 donation from someone this summer that reminded me of the poor woman in the Bible who secretly gave what little she had and understood what Christ said on the subject in a way I never had before. Such generosity makes me weep.
Doing what we can
Our donations come from the 99 percent people talk about and too often laugh up their sleeve about. But if we are going to find a way to fund the research that must be done to cure NET cancer I know I can count on each of them to do what they can. More importantly, I know that they will live good and honorable lives and will fight the battles they have to confront with the same passion I bring to this fight.
And I find that
thought truly exhilarating.
Marathon Walk Update
Our Marathon Walk t-shirts are printed and waiting to be picked up this afternoon. I can’t wait to see them. Every person on the Caring for Carcinoid Walking with Jane Jimmy Fund Marathon Walk team will get one, as will those who donate $100 or more to the cause. I will post a picture of the shirt later today on Facebook as wells here, once I figure out how to do that.
Yesterday was dress rehearsal for me for the Walk. I put in 28 miles in just under nine hours. .
The Carcinoid Cancer Foundation plugged our Walk on their Facebook page and sparked a huge one-day jump in views of this website. A special thanks to them for doing that.
Saturday at midnight will determine whether I keep my hair for the Walk or not. Donations will continue to be accepted after that, they just won’t result in me shaving my head. The challenge is on.
Together, we will beat NET cancer.
