Bittersweet anniversaries
This NET cancer website you know as walkingwithjane.org celebrated its first anniversary on Sunday, the same day Jane and I would have celebrated our 23rd anniversary. To term the day bittersweet would be a huge understatement. In many respects, I wish I had scheduled the opening for a different day–either far earlier or far later. Now, just as our wedding anniversary always borne the pain of our imminent return to school, now the site’s anniversary will also bear the weight of our anniversary.
NET cancer patients and their caregivers need more than information.
But a year ago it was the right thing to do. It kept my mind occupied on the first anniversary without Jane at my side–and me by hers. Friends provided some distractions this year–as did the hint of a cure I wrote about this weekend. But this anniversary proved harder than last. And that has made me all the more determined to continue to help work toward a cure for NET cancer.
I was–and am–too young to be a widower, and too old to be a bachelor. I would wish this fate on no one.
We have done much
But as I look back over the months since Jane’s death I cannot help but be pleased at what we have accomplished in that time. We have raised just under $14,000 for the American Cancer Society, more than $50,000 for the Dana-Farber Cancer Institute and another $5000 for the Caring for Carcinoid Foundation. We have committed another $5000 to deserving students pursuing careers in science education and medicine. That is $69,000 total, so far. We have established a non-profit charitable corporation, Walking with Jane, Inc., to facilitate all that.
It is especially easy for NET cancer patients to feel like victims.
And a year ago we launched this website. We’ve had just under 12,000 views in that time–we will hit 12,000 some day this week–and the vast majority of those views have been people looking for information about NET cancer. Last week someone who came to the site from the Carcinoid Cancer Foundation said we were written in language that was easy to understand. That was the major point of the exercise for me. When I started looking for information on NET cancer and carcinoid syndrome right after Jane was diagnosed, most of it was written in fairly dense language that even my masters degree education found taxing.
The Goals
I set out to create a site where people in trouble with NET cancer could find answers in relatively easy to understand language. When I started the Resources pages I separated things out by my perception of how easy they were to understand. I wanted medical professionals and lay-people both to find the site useful–and I knew mixing everything together was not going to do that.
That is $69,000 total, so far.
But I also wanted a site that would make people think about the issue of NET cancer in some atypical ways. One of the things I take away from my experiences with the American Cancer Society’s Relay for LIfe is the idea of fighting back. It is especially easy for NET cancer patients to feel like victims. The mainstream cancer establishment has largely ignored the existence of NET cancer for the last 44 years, as has the federal government. Even our advocates sometimes seem in no hurry to find answers to this disease.
Still much to do
So there are days I push a political agenda here. It is neither a Democratic nor a Republican agenda. Rather it is a NET cancer agenda. We need to push every button we can find to get this form of cancer the attention it deserves.
I was–and am–too young to be a widower…
I can tell you with absolute certainty that a potential cure for lung cancer or breast cancer or prostate cancer or colon cancer would not sit in a freezer for 30 months waiting for some organization or government to fund a Phase I trial the way the oncolytic virus I wrote about this weekend has sat in one in Sweden.
NET cancer patients and their caregivers need more than information. They need hope. And they need someone to carry the NET cancer banner wherever it needs to go to get potential cures out of the freezer and into use.
