Today, the NET cancer glass is half full
Sometimes I see the NET cancer glass half empty as I did in much of yesterday’s post. I started out planning to give both the depressing and the exhilarating equal space. Unfortunately I underestimated how much darkness there was in that 28 mile hike on Monday that represented my final heavy lifting for the Marathon Walk 11 days from now. Or at least I underestimated how many words it would take to explain it in. I try to keep these posts to 500 words, but that has been very difficult lately–and yesterday…
The day is coming when NET cancer will die…
So let me give the positive things I thought about on that walk Monday their innings today. Because there were a lot of really positive things that found their way into my head that eventually overwhelmed the negatives.
The generosity of the many
The first of those was reflecting on the incredible generosity of so many of my friends and former students. We raised nearly $10,000 between January and the end of June for the Relay for Life of Greater Fall River. We did that despite the heat and the thunderstorms that kept the crowds down the day of the Relay. And we did that despite the fact I was largely absent mentally and physically for those six months because I was chairing the event–and because my mental and emotional states were incredibly fragile. That $10,000 was a real team effort that involved even our youngest members coming up with–and executing–great ideas. To know that others care that much about Jane–and about me–that they would pick up the ball when I really could not was exhilarating.
We had our biggest day in months…
Since June I’ve launched a series of direct mail appeals to support my personal Jimmy Fund Marathon Walk effort. People have, again, opened their hearts and opened their wallets and purses. The donations have not been the kinds millionaires and the well-to-do make. Our biggest donation–there have been two–has been $250. The vast majority have been in the $25-$50 range. But there have been lots of those –enough that we are less than $100 short of $7500 and could reach $10,000 in the days between now and September 9. That, combined with what the other members of our joint Caring for Carcinoid Walking with Jane team have raised, will put about $15,000 in the Walking with Jane Dybowski Fund coffers above and beyond what is already there and what I think will come in between now and year’s end. Dana-Farber tells me that will help leverage more substantial money from other sources as well.
Raising NET cancer awareness
But there is more to all this than money. One of my major goals this year was to begin to get the word out about NET cancer to both potential patients and the medical community. Last year we began that work with a whole series of stories about NET cancer, the researchers, the patients, the caregivers and the symptoms of the disease. This year we already have had stories in all the local papers about NET cancer and our efforts to not only raise money, but also to raise awareness. We’ve printed and distributed a pamphlet on the disease with the help of one of the doctors at Dana-Farber and have begun work on our second package of stories aimed at an audience beyond the Southcoast of Massachusetts.
But there is more to all this than money.
We have a long way to go to reach the 3,000,000 people goal I set back in early June. But you would be hard-pressed to find someone in our area who has not at least heard the words NET cancer at this point. Making the jump to a larger stage will not be easy, but we have begun to lay the groundwork.
Boosts to our NET cancer visibility
We got some substantial help this week from two different sources. The Carcinoid Cancer Foundation posted about our Marathon Walk effort on their Facebook page and referred people to our site while I was out walking. One of those who went praised how clearly written the things on the site are. We had our biggest day in months as a result.
The vast majority have been in the $25-$50 range.
The Jimmy Fund newsletter, Impact, also gave us a big boost this week. They ran an article about the Walking with Jane Dybowski Fund with a wonderful quote from Dr. Matt Kulke that praised our efforts. The print version has been out for a couple of months, but the online version was published this week and brought NET cancer more attention than it often gets outside the oncology profession.
NET cancer research moving forward
And the medical research progress has also been substantial in the last 18 months. Dana-Farber launched the Program in Neuroendocrine and Carcinoid Tumors. We now have Carcinoid cell lines growing in the test tube and are in the process of proving an animal model for the disease. There is a new drug being tested that has the potential to replace octreotide because it hits four of the five serotonin receptors instead of two. RPPT is in trials in the US–trials that have just been modified to see if it will work on liver metastases of NET cancer. (See our Resources page for details on these breakthroughs.) And those are just a few of the highlights.
…there were a lot of really positive things that found their way into my head…
We are making progress–perhaps not enough progress to suit me, but those who know me know I am never satisfied until we get to the end and achieved victory.
The day is coming when NET cancer will die without the patient having to die as well. That day cannot come soon enough to suit me.
