I had testicular cancer in the spring of 2009. The cancer wasn't really the hard part, it was mostly the depression, combined with all the dumb shit that people had to say about it. I told this story at The Moth on February 13th, 2013 - the theme was "Love Hurts." A version of this was published in a cool book illustrated by Arthur Jones called "The Post-It Note Diaries," but this is pretty different. If you want to see more stories, art, or information about where else I might be performing, check out my blog at andiamnotlying.com.
Once again, America's government screws over cancer patients: "Most of Medicare was shielded from the sequester, but because chemotherapy is funded by part of the program that was not, clinics are starting to turn away thousands of patients because they say they can't afford to provide treatments at the reduced rate." [NPR, thanks Amy] — Xeni
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Peggy Orenstein has a hell of a piece in the New York Times magazine on "pink ribbon culture," and her frustration (which, as a woman with breast cancer, I fervently share) about how much progress has been made:
The charismatic lead singer of Australian new wave band The Divinyls, Chrissy Amphlett, has died in her New York home of cancer and multiple sclerosis. She was 53. Above, "I Touch Myself," the autoerotic anthem of '80s teen females that became the Divinyls' greatest hit.
Last month, on her Facebook page, she wrote about the experience of being a breast cancer patient since 2010:
"Unfortunately the last 18 months have been a real challenge for me having breast cancer and MS and all the new places that will take you. You become sadly a patient in a world of waiting rooms, waiting sometimes hours for a result or an appointment. You spend a lot time in cold machines... hospital beds, on your knees praying for miracles, operating rooms, tests after tests, looking at healthy people skip down the street like you once did and you took it all for granted and now wish you could do that. I have not stopped singing throughout all this in my dreams and to be once again performing and doing what I love to do."
Photo: Mark Makela for The New York Times. "Virginia C. McGuire, her partner, Matthew, and their son, Leo, 9, play the board game Pandemic in their Philadelphia home."
When is setting aside money with which to retire at a happy old age a potentially recklessly optimistic decision? When you have cancer.
Librarian, freelance writer, and mom Virginia C. McGuire writes in the New York Times how during the worst of it, her anxiety was sometimes "all about money," and she worried about what would happen if and when her cancer returned. "Nobody pays freelancers for sick time."
"Sometimes I find it easier to fret about money than to worry about big things like cancer," she writes. "It seemed crazy to keep saving for retirement when my chances of living that long were so uncertain."
"The Burzynski Clinic is drawing me back below its event horizon again, like the irresistable black hole made up of supercompressed greed that I see it to be," writes health-skeptic blogger Orac, about the Houston-based clinic that runs roughshod over human subjects protections. Today's post digs into recent FOIA'd FDA documents on the case."How he has continued to get away with it for over 30 years is one of the great questions in drug regulation," Orac says. "Somehow, he does, year after year." [Respectful Insolence] — Xeni
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I did not know Arijit in person, but we exchanged a number of internet messages since we met online as cancer-compadres. His wife posted this today to their Facebook page.
At Wired, Ed Yong has an incredible long-read story about the researchers who are figuring out how and why individual animals sometimes turn into groups operating on collective behavior. That research has implications far beyond the freakish, locust-filled laboratories where Yong's story begins. Turns out, bugs and birds can teach us a lot about the brain, cancer, and even how we make predictions about our own futures. — Maggie
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This excerpt from the new book, Toms River by Dan Fagin, has me instantly intrigued. The book is about one of the rare places where scientists were able to prove that not only was there a cluster of cancer cases, but that those cases could be linked to a cause. The excerpt explains why this is such a rare thing. Turns out, just because it looks like a town has more cancers than it should, doesn't mean that's always what's going on. — Maggie
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HINKLEY, CALIFORNIA—We all love a neat, tidy Hollywood ending to a David and Goliath story. Sadly, in the real world, they are hard to come by. More often than not, the little guy might win a battle, but Goliath prevails over the long haul -- winning the war.
Before I went to Hinkley, I did, of course, watch the movie once again. As it turns out, Erin Brockovich is accurate in many respects.
Water that is heavily contaminated with chromium-6 turns bright yellow. Public utility testing shows more than 70 million Americans drink tap water tainted by chromium-6. Photo by Cameron Hickey.
You might remember the woman who gets a big check at the end of the movie after the down-on-her-luck, crusading legal assistant has brought a giant utility to its knees for polluting the groundwater beneath the tiny desert town half way between L.A. and Las Vegas.
In the movie, she was known as Donna Jensen (and played by Marg Helgenberger). There is no real-life Donna Jensen -- the details of her story are a composite of several real-life travails.
Cory and I have each blogged about Arijit "Poop Strong" Guha, a 31 year-old sustainability PhD student in Arizona living with metastatic colon cancer. Arijit was an interesting guy before his diagnosis, but we wrote about a couple notable things in his life after cancer became part of it: first, his righteous battle with an insurance company that tried to screw him out of covering his cancer costs, then turned around and did the right thing (or, well, as close to it as a for-profit insurance company is ever going to do). And then, there was the time Arijit wore a funny TSA-mocking t-shirt designed by Cory through a TSA checkpoint, and Delta dicked him around for flying while brown.
Today, there is news that Arijit's cancer has progressed.
The New York Times has a story on problems with the treatment of ovarian cancer that holds lessons for many aspects of modern medicine. The big issue here: Local doctors, even local specialists, might not have the information necessary to properly treat patients who come in with problems those doctors don't have a lot of experience with. And those doctors don't always refer patients to people with more expertise. In a world with constantly changing information, how do you get that information to the people patients are most in contact with? In a world with more and more evidence available, how do you change traditions in the medical community that apply treatments based on "what my teachers did" and "what I've always done"? Big questions here, not a lot of answers. — Maggie
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I had a rough week, this week. I came back from a transformative, restorative trip to Hawaii, where I did lots of creative work for Boing Boing and for personal projects. The morning after my flight home, I dove in to a week of medical tests. My primary treatment for breast cancer is complete (chemo/surgery/radiation), but that doesn't mean cancer's over. I have to take a drug for 5 years (or more, who knows), and there is at least one more surgery ahead that I know of.
But there is also much monitoring ahead. I have to get various blood tests and exams and scans every 90 days, 6 months, and annually. Scanning my body for any new cancer, scanning the horizon for bad news, and hoping it never arrives.
The big thing this week was tumor marker blood tests, which are used to see if your blood shows signs that cancer is returning and progressing. The tests are very much imperfect, a blunt and controversial tool. What they tell us is a matter of debate. Some oncologists don't even use them. Mine does, and I do respect why, and I comply.
When I received my tumor marker results, I flipped the fuck out, even though my oncologist's office told me they were "fine." The numbers showed a slight increase in my tumor markers. How the fuck can that be fine?
"About 2,240 cases of breast cancer are diagnosed in U.S. men a year, compared with about 232,000 cases of invasive cancer among women," writes Laura Hambleton in the Washington Post. "And because male breast cancer is rare, most men with the disease do what Bogler did and ignore the symptoms: lumps in a breast, discharge from a breast or other changes in a breast or nipple." Peter Criss of the rock band KISS is among the male breast cancer patients mentioned in the article. (HT: Aileen Graef)— Xeni
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"Unfortunately the last 18 months have been a real challenge for me having breast cancer and MS and all the new places that will take you. You become sadly a patient in a world of waiting rooms, waiting sometimes hours for a result or an appointment. You spend a lot time in cold machines... hospital beds, on your knees praying for miracles, operating rooms, tests after tests, looking at healthy people skip down the street like you once did and you took it all for granted and now wish you could do that. I have not stopped singing throughout all this in my dreams and to be once again performing and doing what I love to do."
by Dan Fagin, has me instantly intrigued. The book is about one of the rare places where scientists were able to prove that not only was there a cluster of cancer cases, but that those cases could be linked to a cause. 
Cory and I have each blogged about Arijit "