A lot of you know I've had cancer(s). That it's been tough, that I've been given the chance to write about it. And that I have great health insurance, a huge impact on my family's financial and emotional life. However, what many readers may not know, even if you've read my work, is that buried in a piece for Harper's Magazine that I published I talk about having a malignant tumor in the base of my skull (not my brain) called Chordoma. The piece makes it clear that I continue to live with it. But to make it more clear, this is one of the rarest diseases in America, and very few people, save for the generous experts who have to date saved my life with surgery and radiation and management, know what to do with chordomas, including a lot of doctors and researchers (certainly in LA).
Of course, we're living at a time when a researcher might figure out an ever-better treatment.ut a tiny portion of the population may not realize that this silent, fatal disease and its treatments force us to perpetually fight terrible side-effects (among them, the very serious condition of social isolation), and that if this is just one of the cancers you have/have had, life is never "OK," even if you do your best to make everyone around you feel like it is, lest you seem stranger, weirder, more of a reminder of everyone's mortality, a guilt-inducer. Rarer.
At any rate, the guy linked to in a few sentences is pretty much the only one of our generation, without an MD or PhD, working really hard to lead research and other programs that may help people with this specific rare disease. He and his foundation deserve serious support. His name is Josh Sommer, and his non-profit is called Chordoma Foundation. I'm ashamed that I haven't been more vocal about him and his work, and that most times I don't want to read about this one of my diagnoses. But on a day like today, when I have questions about a certain drug that I need for one late effect of a previous cancer treatment, something that might make my chordoma worse, a question that cannot be answered, I feel lucky that Josh is doing what he does. This call for support is long overdue.
I hope that you read about Josh, and back his group. I learned that I have (a) chordoma because of an incidental MRI taken because of headaches. That means that many other people can have it, and that it can be less rare than we think, because who gets head MRIs for no good reason, and who looks into the heads of the deceased? I'd hate to learn of one more person suffering from this deadly problem, but it's highly possible, and that -- not any sympathy for my situation -- is why I posted this. People with chordoma are often told they may only live seven or ten years.
Some of us who've had the advanced treatments and surgeries are optimistic about living a lot longer, but we could be wrong. Josh, and the people he's working with, are not living in the vagaries; they are living and working for change in the now, and they don't feel their job is done with just one magazine article that appears to be a book review. I hope that I can help them more. -- Adam Baer