Boing Boing » cancer

Chasing away the big black bird: a monologue on cancer and depression by Jeff Simmermon

Xeni Jardin — Thu, 16 May 2013 20:41:56 +0000

My friend Jeff Simmermon talks in this video about cancer and depression. He nails it. Jeff explains,

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.

US budget sequester means thousands of chemotherapy patients on Medicare turned away

Xeni Jardin — Sat, 27 Apr 2013 01:08:59 +0000

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]

Our Feel-Good War on Breast Cancer

Xeni Jardin — Thu, 25 Apr 2013 11:07:12 +0000

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:

Scientific progress is erratic, unpredictable. “We are all foundering around in the dark,” said Peter B. Bach, director of the Center for Health Policy and Outcomes at Memorial Sloan-Kettering Cancer Center. “The one thing I can tell you is some of that foundering has borne fruit.” There are the few therapies, he said — like tamoxifen and Herceptin — that target specific tumor characteristics, and newer tests that estimate the chance of recurrence in estrogen-positive cancers, allowing lower-risk women to skip chemotherapy. “That’s not curing cancer,” Bach said, “but it’s progress. And yes, it’s slow.”
The idea that there could be one solution to breast cancer — screening, early detection, some universal cure — is certainly appealing. All of us — those who fear the disease, those who live with it, our friends and families, the corporations who swathe themselves in pink — wish it were true. Wearing a bracelet, sporting a ribbon, running a race or buying a pink blender expresses our hopes, and that feels good, even virtuous. But making a difference is more complicated than that.

Read: "Our Feel-Good War on Breast Cancer" [NYTimes.com]

Divinyls singer Chrissy Amphlett dies of breast cancer, MS

Xeni Jardin — Mon, 22 Apr 2013 13:46:53 +0000

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."

I know how that feels.

More: Divinyls singer Chrissy Amphlett dies. (ABC News (Australian Broadcasting Corporation, thanks Eliot)

More at Rolling Stone, and Reuters.

Once again, every single obit I just linked to there uses the trite phrase "battling cancer," "fighting cancer," or "lost her battle with cancer." Once again, I will take the opportunity to remind the world that cancer is a biological process involving cells that refuse to do what they're supposed to do inside our bodies, not a "fight" that the weaker souls among us "lose." Please stop using that phrase.

Saving for retirement as an act of wild optimism

Xeni Jardin — Tue, 26 Mar 2013 16:01:01 +0000

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."

Stanislaw Burzynski vs. regulations protecting human research subjects, revisited: Orac on Cancer quackery

Xeni Jardin — Tue, 26 Mar 2013 15:05:52 +0000

"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]

Arijit "Poop Strong" Guha has died of colon cancer

Xeni Jardin — Sun, 24 Mar 2013 17:36:03 +0000

Arijit "Poop Strong" Guha (Twitter), a really sweet guy who took on a dirty rotten insurance company and stood up to TSA "Flying While Brown" bullying (while wearing a t-shirt designed by Boing Boing's own Cory Doctorow) has died.

He was 31, and had metastatic colon cancer.

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.

It is with the deepest sadness I have ever known that I share the following: Arijit Guha—the bravest, kindest, most compassionate man to grace this planet—died earlier today. He went peacefully, at home, surrounded by love and free from pain. He lived his life, even up to the very end, with warmth, humor, and positivity, and his boundless capacity for hope and love gives me strength. He will be greatly missed, but I know that his beauty, goodness, and desire to make the world a better place will continue on through all of the people and lives he has touched.
My heart is aching, but the pain is eased a bit knowing that he has the support of such an amazing community of people, so many of whom have never met him. I thank you all, from the bottom of my heart, for all you have done for him. He is truly an inspiration (though he hated being told so), and I will be eternally grateful to have had him in my life, and to have been able to share him with all of you.
Love,
Heather

Here's a Facebook memorial page for him: "Celebrating Arijit, Life, and Hope."

Arijit Guha—rabble rouser, do-gooder, mustache enthusiast—died on March 22, 2013, after a spirited, graceful, and inspirational bout with cancer. His life was one of love, optimism, joy, humor, and compassion, and this page is to celebrate that life.

My heart goes out to you, Heather, and to all who knew and loved this kind young man.

Fuck cancer. And fuck injustice. Long live love.

(via Arizona Daily Star and @KinkyCancer)

The power of the swarm

Maggie Koerth-Baker — Thu, 21 Mar 2013 20:20:25 +0000

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.

Why "cancer clusters" are so hard to confirm

Maggie Koerth-Baker — Fri, 15 Mar 2013 17:08:26 +0000

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.

Erin Brockovich: the real-life unhappy ending of Hinkley, California, and a tale of science for sale

Miles O'Brien — Thu, 14 Mar 2013 13:45:56 +0000

[Video Link. BB Editor's note: This blog post originally appeared at the PBS NewsHour site. Miles investigated this story for PBS NewsHour in partnership with the Center for Public Integrity (CPI). Go to their site for an in-depth look at how industry scientists stalled government action on chromium-6.]

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.

But Roberta Walker was the main inspiration. Naturally, it was not long after I met her that I asked her what she thought of the movie.

“Oh, it was a piece of crap,” she said. “The only true thing about the movie is that [Pacific Gas and Electric] poisoned us. We didn’t bring a giant to their knees obviously; we just woke them up -- woke up the dragon.”

Roberta is not allowed to say how much she got from the $333 million dollar settlement that gave the screenwriters such a nice bow to wrap up the movie. It was, however, enough to allow her and her husband to build a new home on a hill overlooking Hinkley.

“We loved it here, everything about it,” she told me. “The peace, the quiet, the privacy, and we built it. We had our well tested…and there was no chromium.”

But there is now. And Roberta is looking to move again -- out of Hinkley. But that does not guarantee she will find chromium-6 free water.

For the past 60 years, water polluted with chromium (VI) has plagued Hinkley, Calif., the desert town made famous by the film "Erin Brockovich." Although residents there won their lawsuit against the polluter, Pacific Gas & Electric Co., there’s still a debate over whether the compound causes cancer in drinking water. The Environmental Protection Agency says yes, but industry scientists disagree. Image: PBS NewsHour

The real-life Erin Brockovich has moved onto the national stage as a consumer advocate and now curates a crowd-sourced map of reported cancer clusters. It is a real eye-opener. And it makes you wonder why environmental regulators don’t do this kind of thing.

A few years ago, The Environmental Working Group did a study of U.S. tap water, and it found a chrome-plated, potentially carcinogenic mess. They tested tap water samples from 35 cities and found chromium-6 in 31 of them.

The highest concentration EWG discovered, came from Norman, Oklahoma. But at nearly 13 parts per billion, the water there is still considered safe according to the 22-year-old EPA standard (100 ppb). It is, however, more than 600 times greater than the public health goal established by the California Environmental Protection Agency in the wake of the Hinkley well poisoning scandal.

Naturally, I was wondering about the tap water in my office/apartment in Bethesda, Maryland. Turns out it is .19 parts per billion (ppb.) That is ten times more Chromium-6 than the Cal/EPA public health goal.

I am a big proponent of tap water. I think the widespread use of bottled water is an environmental disaster. So I bought myself a countertop filter. And now I won’t drink anything straight from the tap anymore. I might soon upgrade to an under-sink model.

It is a shame that we cannot be more confident about the water that flows into our homes. Regulators at the state and federal level say they have to weigh public health concerns against the economic realities of tougher drinking water standards.

In the U.S., we have a Food and Drug Administration to ensure that any chemicals we ingest in the form of drugs are safe before they are allowed on the market.

Should we apply the same burden of proof to chemicals that are widely used by industry, which all too frequently poison our wells?

David Heath of the Center for Public Integrity contributed to the report.

A health update from Arijit "Poop Strong," cancer blogger and awesome guy

Xeni Jardin — Thu, 14 Mar 2013 13:28:22 +0000

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.

From his blog post:

We don’t know how much time he has, but are hoping for the most we can get; it is almost impossible to predict these sorts of things. The point isn’t to count the hours, but to enjoy them. If we asked for a specific time table from the doctors, we’d just end up fixating on how little time Arijit has left, rather than how much time he has. We cannot know or control the amount of time, but we can control how we spend that time, and we refuse to waste it worrying about the unknown. We like to think that we’d live each day with the same gratitude, appreciation, and enthusiasm whether he had was six weeks or six months, so what difference would it make? There are too many things we want to do in the present to bother ourselves with an unknowable future.

Love you, Arijit, my cancer brother.

What ovarian cancer can teach us about medicine, as a whole

Maggie Koerth-Baker — Tue, 12 Mar 2013 15:09:24 +0000

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.

Scanxiety, or how waiting for cancer tests makes you crazy

Xeni Jardin — Fri, 08 Mar 2013 17:19:59 +0000

Photo: Me in an MRI, by Tara Brown

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?

Bad numbers aren't supposed to go up. I cried. I panicked.

"Need to hear your voice," I texted my boyfriend. "Cancer test scared me."

I spoke to my boyfriend and my cancer shrink and cried some more, and then emailed cancer friends I knew would understand (they did). At some point I stopped crying.

I asked my oncologist's office for details. The numbers I got didn't make me feel fine. I got results that were presented as good news, but the whole process confused and upset me. Why do results from other tests for other tumor markers that my friends with other kinds of cancer get mean one thing, while the numbers from the type of marker we test for in my case mean something completely different?

If my number is up a little bit, does that number represent the first tiny step in a long stairway towards death? Or is that data point just noise, masquerading as signal?

I had to ask doctors (and fellow cancer patients whose take on medical math I trust) to help me figure out whether this score increase meant I was moving closer to dying, or was just a blip of fluctuation that told us nothing bad. It was the latter.

Does this sound like it would make you crazy? It makes me crazy.

If I didn't have cancer, my behavior around the tests would definitely be what you would call crazy. But when you have gone through the ringer with a disease that wants to kill you, and still may, it's not a crazy reaction at all. It's more like PTSD.

And as traumatic as it can be, scanxiety is better than the alternative: being dead, so there's nothing to test, and no odds to wonder about.

I was tweeting yesterday about how frightening and stressful the experience was (I do this sometimes, when I'm upset), and some cancer friends sent along links to two essays that articulate scanxiety beautifully.

Our Wait-and-See Culture, by Robert J. Abramson, in today's New York Times:

As the physicist Niels Bohr said, “prediction is very difficult, especially about the future.” But this is the exact position that many physicians and patients find themselves in. We must make life-altering decisions based on incomplete information. In my case, the decision to follow up in six months appeared to be the prudent one — and it turned out to be the right one as well. My six-month follow-up revealed the lesion unchanged. It was recommended that I follow up in another 6 to 12 months.
Welcome to the “follow-up culture.” The danger here is that we will always be living in the future: the scan was O.K., but what about in a year? No advances in medicine, as remarkable as they may be, will ever provide us solace for this predicament.
And yet, as disturbing as it is, it also provides an opportunity to live our lives to the fullest each day. As some Eastern philosophies tell us, life is like a river, in perpetual motion, and when we flow with it we attain a level of tranquillity. My patients and I will never know what the future holds for us in this new medical calendar, but my hope is that we can come to terms with the river, make friends with it, and allow it to teach us to be present in the here and now.

And, from Tom Roush, who follows me on Twitter, "Point and Click."

The essay describes a response Tom gave to a friend who said about Tom's periodic cancer screenings, “So, you must be used to it by now.”

It's not something you ever get used to, as Tom explains so perfectly here:

“It’s like every six months, someone holds a gun to your head, and they slowly squeeze the trigger. You can hear the springs in the gun compressing, you feel the muzzle shake a little as their muscles quiver, and you tense up, anticipating the explosion. Adrenaline pours through your body. You try to keep from shaking, from crying, because the gun exploded twice before, and you don’t want to go through that again.
This time, there’s a loud “click” of the hammer slamming down on an empty chamber. Just that sound explodes in your ears. Every muscle in your body jolts tight as the sound echoes – then rings away.
No bullet this time.
Good.
But it takes awhile to recover.
And no… you don’t ever get used to it.

This.

My tests this week were the first time post-treatment that we compared new tumor marker data against previous (post-treatment) tumor marker data. So, the scariness was amplified by the fact that this process was new for me.

Another 90 days from now, when we test again, my reaction may be different. When we do the next mammogram, MRI, or other periodic screenings, my reaction might be different.

I do have good support resources.

I am getting better at coping with all of this as it goes on.

But that's just it.

It goes on. And on. And on.

To be a cancer patient is to be forever at the mercy of medical math.

It is not easy. And you never get used to it.

Because it is rare, male breast cancer often diagnosed only at late stage

Xeni Jardin — Tue, 26 Feb 2013 20:31:23 +0000

"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)

Harlem Shake, the chemotherapy edition

Xeni Jardin — Mon, 25 Feb 2013 22:09:11 +0000

That's @wunderglo in the video. So so so awesome. I feel cheated. My chemotherapy infusions were nothing like this. Also, FURRIES. (from the Wunder Project, HT: Sean Smith)

Best. Harlem. Shake. Ever.

First-person account of how cancer can affect a marriage

Xeni Jardin — Mon, 25 Feb 2013 21:37:01 +0000

Ask women about their relationship, writes Jody Schoger, and "you’re apt to hear variations on this theme, 'He never blinked,' or 'He really showed me how strong a man he truly is.' In other words, you’re not apt to hear what it’s truly like for some women." On her blog, she publishes a first-person account from an anonymous contributor that rings true for many. The tl;dr: the impact of cancer is really, really hard for both partners in a relationship—before, during, and after treatment.

From Seizure to Surgery: first-person account of what it's like to have a brain tumor

Xeni Jardin — Fri, 22 Feb 2013 20:46:37 +0000

Jess Hill has published the second part of a three-part series on what it’s like to have a brain tumor diagnosed, then surgically removed. Read: Magical Realism: From Seizure to Surgery. The earlier installment is here.

Long read on US health care woes in TIME: "Bitter Pill: Why Medical Bills Are Killing Us"

Xeni Jardin — Thu, 21 Feb 2013 23:53:52 +0000

A must-read by Steven Brill in Time on the brutality of medical bills in America, for cancer patients and others in need of medical care.

Shades of Tuskegee in Indian cancer studies

Maggie Koerth-Baker — Thu, 21 Feb 2013 18:21:32 +0000

How do we know whether screening for something like cervical cancer is effective at saving women's lives? Two ongoing studies conducted in India (one funded by the National Cancer Institute and the other by The Gates Foundation) are aimed at answering that question — but their methods are under fire by critics.

It works like this. Say you want to test the effectiveness of a new screening method. You recruit a large group of women and you split them into two groups. One group gets the screening regularly. The other, the control group, doesn't get the screening. Then you follow them over time and track how many women in both groups died of cancer. That's a pretty basic scientific method. It's also something that prompts big questions about the treatment of women in the control group.

The people conducting the study say women in the control group were told they could seek out screening on their own. Critics argue that point (and the way the study worked) wasn't clearly explained, and that those alterante options weren't as available to the women as researchers imply. The majority of the women participating in the studies are poor and have very little formal education.

There are some important differences between this and the infamous Tuskegee syphilis experiment. In that case, researchers identified men with syphilis and neither told them about their disease nor offered them treatment — just monitored the deadly disease's progress. Here, there's clearly an attempt (however poorly executed) at being open with the women about what the study is and what is being done. And nobody is intentionally trying to prevent sick women from being treated. But the study definitely exists in an uncomfortable space and could reasonably be called unethical. Is it ever okay to not screen people for a disease that are pretty sure some of them have? If not, how do we figure out whether potentially life-saving screening methods are actually useful? How do you do statistics ethically when people are the numbers? I don't have good answers for these questions.

Here's what we do know. There are 76,000 women enrolled in the National Cancer Institute study, and another 31,000 in The Gates Foundation study. So far, they've been tracked for 12 years and at least 79 of the women in the control groups have died of cervical cancer.

Read Bob Ortega's full story at The Arizona Republic

Drug OD fatalities up for 11th consecutive year; not one was due to marijuana

Xeni Jardin — Tue, 19 Feb 2013 23:26:48 +0000

Federal data to be released this week through the Journal of the American Medical Association shows that drug overdose deaths rose for the 11th year in a row. Most were accidents involving prescription painkillers: specifically, opioids like OxyContin and Vicodin which are commonly prescribed for pain management, and are widely abused. Those two drugs contributed to 3 out of 4 medication overdose deaths, according to the report.

Not one single death in the Centers for Disease Control and Prevention data set was due to overdosing on marijuana.

Why? Generally speaking, because of the way cannabis affects the human brain and nervous system, it is not medically possible to OD on marijuana—though you're welcome to try, and unconfined munchies could certainly cause some damage. Not that death by Doritos would be such an awful thing...

And yet in federal law, with the data once again proving that pot is non-lethal, cannabis remains classified as a schedule 1 drug. That classification means there are no federally-recognized medical applications for pot, while prescription drugs proven yet again to be potentially deadly when abused remain readily and legally available.

As an aside, it's lulzy to note that in the letter of the DEA's law, it's spelled "marihuana." Both the spelling of the law and the logic behind it are antiquated.

Photo: Shutterstock

Networks of Microexperts: crowdsourcing for health care

Xeni Jardin — Wed, 13 Feb 2013 19:07:33 +0000

A post on Dr. Roni Zeiger's blog (it's a few months old, but new food for thought for me) explores models for shared intelligence in health care.

"We’ve heard a lot about crowdsourcing, or outsourcing work that one person would normally do to a large and often distributed crowd. There is a related and I think even more important idea of a network of microexperts and how they amplify the collective intelligence of their members," Zeiger writes.

"In thinking about this idea in the context of health, I’m convinced that our next exponential leap in medical progress depends on us learning from networks of microexperts."

Reading this through, I can imagine ways this rings true for cancer.

Zeiger is the former Chief Health Strategist at Google, where he led efforts ranging from Google Flu Trends to Symptom Search.

(via Karen Wickre)

How one mom with metastatic cancer talks to her children about cancer

Xeni Jardin — Tue, 05 Feb 2013 23:02:56 +0000

My friend Lisa Adams, who coached me through so much of my treatment for breast cancer, recently learned that her breast cancer returned as metastatic disease. She has been writing about cancer eloquently and beautifully since she was diagnosed, and so much of what she's published since her disease advanced has been powerful, brutal, essential reading. Her most recent post, which appears on HuffPo, is about an hour-long talk with her daughter that started with her first question, "Are you scared?"

She asked questions about genetics and risks of getting cancer to what kind of treatments I might need. She asked me again, as if to confirm for herself, "It's not curable, right?" We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it's normal. That sometimes that fear makes you brave enough to do things you don't think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn't want her to be afraid of me as I got sicker someday. "I would never be afraid of you, Mom. I'm only afraid of cancer," she said. My heart squeezed and thrashed and the tears flowed.

More: Lisa Bonchek Adams: The Hardest Conversation.

Christian Bale phones a young fan

Xeni Jardin — Fri, 25 Jan 2013 19:35:46 +0000

Actor Christian Bale had a conversation with Zach, a young fan of his "Batman" who happens to have cancer, and is a patient in a Seattle hospital. Zach's parents video'd the exchange. It's pretty cool. Bale seems like a really empathetic person.

(HT: @EWGradySmith)

How Doctors Die

Xeni Jardin — Tue, 22 Jan 2013 22:48:51 +0000

Photo: patrick.ward04.

Ken Murray, Clinical Assistant Professor of Family Medicine at USC, writes about his experience of how his peers in medicine tend to handle end-of-life issues.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Zócalo Public Square :: How Doctors Die.

What it's like to have a grand mal seizure

Xeni Jardin — Tue, 22 Jan 2013 22:35:41 +0000

Radio producer Jess Hill, who has been working in the Middle East, wrote an account of what the experience of having a grand mal seizure was like.

She wrote the post a week after the episode, and two weeks before having brain surgery to remove the tumor that caused it.

"At the time I was still having seizures every few days, and just the act of writing about the first seizure in such detail almost brought on another one," Jess explains. "I initially planned to keep this account private, but after two months, I’ve decided to share it, if only for the fact that it might be useful to others who have had or will have a similar experience."

It happened when she was in transit via plane from Yemen to Beirut.

My head resting against the window, I was swimming around somewhere between awake and asleep when I felt my mind fall through a trapdoor and into a vacuum. Suddenly, there was no ground for my mind to land on. No language. No concepts. Anxiously I grasped through the smothering black for an idea, a word, something I could articulate. Nothing. Just black.
Then I felt my eyes roll up in my head. On a slow, steady rhythm, they started jerking forcefully to the right. Language flooded back i’ve lost control! and jerk, jerk, jerk, further and faster my eyes pushed to the right. Breath quick and shallow now, eyes so far up and to the right they pushed painfully against their sockets. My head jerked too now, like it was being dragged by my eyes jerk, jerk, jerk, I tried to push out a sound, a grunt. Nothing but spittle.
In full seizure now, shaking uncontrollably, I could still see out of the very corners of my eyes. There was no-one sitting next to me, and the man two seats down was staring into his iPad.

Read more. Follow Jess on Twitter: @jessradio.

Find the unfortunate typo in this Livestrong "nutrition" article

Xeni Jardin — Sat, 19 Jan 2013 03:50:35 +0000

There are three things very wrong in this article at Livestrong.com, which my friend Meredith Yayanos pointed me to just now via Twitter. One, "nutrition" and "Velveeta" used in the same sentence at a website associated with cancer prevention and treatment. Two, the message in the yellow band—probably something they want to downplay right now, but no-one has gotten around to updating on the site. And the third is the real kicker, but you'll have to read the copy closely to find it.

The Livestrong dot-com site is basically a content farm populated with Turked-out SEO-bait by Demand Media; the dot-org is where the cancer advocacy organization does its thing.

Cancer quackery news: Stanislaw Burzynski threatens one of his own patients over website

Xeni Jardin — Fri, 18 Jan 2013 22:10:43 +0000

Anti-cancer-quackery blogger Robert Blaskiewicz has a blog post up that details how Houston-based "alternative cancer treatment" practitioner Stanislaw Burzynski (photo at left) whom many reasoned minds in the oncology field would describe as a quack, has crossed a new line in his ongoing awfulness.

The latest: Burzynski's rep threatened one of his own patients, Wayne Merritt who had advanced pancreatic cancer, after Wayne (right) and his wife Lisa published a website detailing how they'd been duped.

That site, burzynskiscam.com, is still up, despite the nastygram threatening "to file a legal lawsuit" for its purportedly "defamatory" contents.

Threatening bloggers is nothing new for Burzynski, but threatening cancer patients is, as far as I can tell.

Blaskiewicz adds,

The Skeptics for the Protection of Cancer Patients is looking to put an actual dent into Burzynski's wallet while shaming him publicly for what he's done by raising money for St. Jude's Children's Research Hospital. We're trying to raise $30,000, the cost of starting his bogus trials according to a patient who was dead just days after starting his treatment. We're donating all of it in his name on his birthday, Jan 23rd. That same day, we're issuing a challenge to the Clinic to MATCH THE TOTAL that skeptics raise. That's the big thing. Regardless of whether or not he participates (and I suspect that it's hard to shame the shameless), we plan to say that it's probably the greatest contribution to cancer research ever made in his name. :) The fundraiser is here. For bloggers who want to help drive his google search results into the toilet (by putting reliable info in its place), a guide can be found at thehoustoncancerquack.com. Feel free to use the birthday ducky graphic I have there. :)

Below, two excerpts from the nastygrams sent by Burzynski's rep to Wayne Merritt’s wife. They're pretty wacky. And it takes a special kind of asshole to bully a cancer patient and his wife in this manner.

And Dr. Harriet Hall, aka "The SkepDoc," sent around this email backgrounder to Skeptics and pro-science types. It's a good place to start, if you're not familiar yet with Burzynski.

I'll paste it here, below:

Stanislaw Burzynski is a doctor who has lured patients to his Houston clinic with two promises: to try to cure their incurable cancers with his antineoplaston treatments, and to enroll them in a clinical trial. Patients in clinical trials are usually reimbursed for all expenses and paid for participating. Instead, Burzynski makes them pay for everything, typically $30,000. And, he is only claiming to do clinical trials because the FDA has investigated him and has prohibited him from treating patients outside of trials. So he pretends to be doing clinical trials, but he never publishes any results. Instead of a research protocol with IRB oversight and informed consent, he offers "individualized" experimental treatments to patients without any randomization or controls. He produces his own drugs and charges more than they would cost elsewhere. He claims to have many miraculous successes, but a website is accumulating the case histories of his far more numerous failures.
Read some of the stories here and weep. Just one example: He told a patient his cancer had shrunk by 84% on the latest MRI, so the patient assumed he was improving and wrote a check for another course of treatment. Then the neurosurgeon who had originally operated on him got a hold of the MRI and saw that the tumor was actually unchanged; the Burzynski Clinic had misinterpreted the healing of the hole where part of the tumor had been removed. Over a hundred of these cases have been collected and are gradually going up on the website to counter the testimonials on the misleading Burzynski Patient Group website. [The most recent entry demonstrates that threats have been issued against cancer patients.]
A website entitled "The Houston Cancer Quack" has been established to carry out a fund raising drive. The plan is to raise $30,000, the typical cost of treatment for a Burzynski patient, and to notify Burzynski on his birthday as a sort of birthday present. The money will go to support legitimate cancer research at the St. Jude Children's Hospital, and Burzynski will be challenged to match the donation. He can afford it. He lives in a $6 million, 14,495 square foot mansion.
He continues to offer unethical treatments to these desperate patients, who are being financially ruined in the pursuit of false hope and have been robbed of the opportunity for conventional palliative care and precious time with their families.
For more information see the article Dr. Gorski wrote on the "Science-Based Medicine" website today.
Also see the numerous articles he has written on the Respectful Insolence website.
What Burzynski is doing is evil. The FDA tried to stop him and failed. The Texas Medical Board tried to stop him, but lost on a technicality. We are hoping this fund raising drive will bring his misdeeds to the attention of the public. We hope the media will pick it up and spread the word to a wide audience.
This is a win/win proposition: You can support cancer research for children and simultaneously embarrass a doctor who is getting rich preying on vulnerable cancer patients. I can't think of a worthier cause. Please, PLEASE go to this webpage.
Click on the donate button. It's secure and simple to make a donation with your credit card online.
Skeptics, Unite! Here's a chance for skeptics to really make a difference.

Pregnancy drug popular from 1950s-70s blamed for breast cancer in "DES daughters"

Xeni Jardin — Thu, 10 Jan 2013 16:31:00 +0000

Drug giant Eli Lilly this week settled a lawsuit brought by four sisters with breast cancer who believe their disease was caused by a pregnancy drug their mother took during pregnancy in the 1950s. The settlement could lead to more such claims being won by other women with breast cancer whose moms took Diethylstilbestrol, also known as DES, a synthetic estrogen widely prescribed until 1971. The drug was also widely administered to US dairy and beef cattle, via their feed.

Above, an ad placed by a DES drug maker in major medical journal in 1957, urging obstetricians to prescribe it to all pregnant women. At the time, the drug was not yet patented. The small print reads:

Recommended for routine prophylaxis in ALL pregnancies... 96 per cent live delivery with desPLEX in one series of 1200 patients - bigger and stronger babies, too. No gastric or other side effects with desPLEX - in either high or low dosage.

DES Action Info, a nonprofit that connects people exposed to DES, says:

It is now known that DES exposure is related to health problems in the sons and daughters of the women who took it, and in the women themselves.

The National Cancer Institute has an explainer on DES, including its effects on sons and daughters of women who took it. A CDC page on DES is here. DES Action has a well-documented timeline of the drug's history here.

The issue doesn't just affect women: Male children and grandchildren of DES users also face elevated risks of certain kinds of cancers, according to these sources.

There's a good LA Times piece on the DES settlement here. And CBS News ran a report earlier this week, before the settlement was reached in this most high-profile and precedent-setting "DES Daughters" case.

(Images courtesty DES Action)

How space radiation hurts astronauts

Maggie Koerth-Baker — Fri, 04 Jan 2013 18:45:48 +0000

NASA image of the Crab Nebula, a remnant of a supernova. Scientists think that Galactic Cosmic Radiation comes from places like this.

Space is full of radiation. It's impossible to escape. Imagine standing in the middle of a dust storm, with bits of gravel constantly swirling around you, whizzing by, pinging against your skin. That's what radiation is like in space. The problem is that, unlike a pebble or a speck of dirt, ionizing radiation doesn't bounce off human flesh. It goes right through, like a cannonball through the side of the building, leaving damage behind.

Last week, researchers at the University of Rochester Medical Center published a study that suggests long exposures to galactic cosmic radiation — like the kind astronauts might experience on a trip to Mars — could increase the risk of developing Alzheimer’s disease.

Reading stories about that paper made me curious. We've now been sending people into space for more than 50 years. We've been able to track a generation of astronauts as they aged and died and we're constantly monitoring the people who travel in space today. Research like what was done at the University of Rochester is conducted on lab animals, mice and rats. It's meant to help us prepare for the future. But what do we know about the past? How has radiation affected the people who have already been to space? How is it affecting the people who are there now?

There is one key difference between the astronauts of today and those of the future. That difference is the Earth, itself.

Galactic cosmic radiation — also called galactic cosmic rays — is the kind of radiation that researchers are most worried about. It's made up particles, bits and pieces of atoms that were probably flung off from the aftermath of supernovas. The majority of this radiation, roughly 90%, is made up protons ripped from atoms of hydrogen. These particles travel around the galaxy at almost the speed of light.

And then they hit the Earth. This planet has a couple of defense mechanisms that protect us here on the ground from the impact of galactic cosmic radiation. First, Earth's magnetic field both pushes away some of the particles and blocks others completely. Then, the particles that make it through that barrier start to encounter the atoms that make up our atmosphere.

If you drop a big tower made of Legos down the stairs it will break apart, losing more pieces every time it hits a new step. That's a lot like what happens to galactic cosmic radiation in our atmosphere. The particles collide with atoms and break apart, forming new particles. Those new particles hit something else and also break apart. At each step, the particles lose energy. They get a little slower, a little weaker. By the time they "come to a stop" at the ground, they aren't the galactic powerhouses they once were. It's still radiation. But it's much less dangerous radiation. Just like it would hurt a lot less to be hit with one Lego block, than with a whole tower of them.

All of the astronauts we've sent into space so far have, at least partially, benefited from Earth's protective barriers, Francis Cucinotta told me. He's the director of the NASA Space Radiobiology Program, the go-to guy for finding out how radiation hurts astronauts. He says, with the exception of Apollo flights to the Moon, the human presence in space has happened within the Earth's magnetic field. The International Space Station, for instance, is above the atmosphere, but still well inside the first line of defense. Our astronauts aren't exposed to the full force of galactic cosmic radiation.

They're also exposed to it for a relatively limited amount of time. The longest spaceflight ever lasted a little over a year. And that matters, because the damage from radiation is cumulative. You simply can't rack up as much risk on a six month jaunt to the ISS as you could, theoretically, on a multi-year excursion to Mars.

But what's interesting, and concerning, is that even with those protections we do see signs of radiation damage to astronauts, Cucinotta told me.

The big thing is cataracts — changes in the lens of the eye that make it more opaque. With less light able to get into their eyes, people with cataracts lose some of their ability to see. In 2001, Cucinotta and his colleagues looked at data from the ongoing Longitudinal Study of Astronaut Health, and found that astronauts who had been exposed to higher doses of radiation (because they'd flown more missions in space, or because of the specifics of the missions they'd been on*) were more likely to develop cataracts than those who had been exposed to lower doses.

There's also probably an increased risk of cancer, though it's difficult to estimate how much, exactly. That's because we don't have human epidemiological data about the kind of radiation astronauts are exposed to. We know the rates of cancer for survivors of the nuclear bombs dropped on Hiroshima and Nagasaki, but that radiation isn't really comparable to the stuff in Galactic Cosmic Radiation. In particular, Cucinotta is concerned about particles known as HZE ions.

These particles are very heavy and very fast and we don't experience them here on the ground. They're the kind of things that get filtered out and broken down by Earth's defense systems. But HZE ions can cause more damage, and different kinds of damage, than the radiation scientists are really familiar with. We know this because scientists actually compare samples of astronauts' blood before and after a spaceflight.

Cucinotta calls this pre-flight calibration. Scientists take a blood sample from an astronaut before the launch. While the astronaut is in space, the scientists divide that blood sample up and expose it to various levels of gamma rays — the kind of damaging radiation we're used to dealing with on Earth. Then, when the astronaut comes back, they compare those gamma ray-affected samples to what has actually happened to the astronaut while in space. "You see about a two-to-three fold difference across the population of astronauts," Cucinotta told me.

One example of how HZE ions are different: They seem to be able to affect cells they don't even touch. In non-human trials, these non-targeted effects can happen in cells up to a millimeter away from the cells that have actually been irradiated and we don't really know what that means yet. But it definitely changes the way we think about radiation risks, which is a model based on the assumption of a direct, linear connection between dose and risk. With HZE ions, that might not be true.

All of this explains why studies like the one published last week are going on. It's not that we're seeing horrible effects in astronauts who've been to space in the last half-century. Instead, there are two things those astronauts have shown us. First, there are genetic changes and damage happening even within the relatively safe confines we've traveled thus far. Second, there is a hell of a lot we don't know about how radiation exposure and risk works in outer space. It's almost like we can smell gas in our house, but we don't yet know whether there's a serious leak, or we just left a stove burner on for a couple minutes.

If our future really does lie in the stars, then this is a mystery we're going to have to figure out.

*The astronauts who flew on Skylab and the NASA-Mir missions were exposed to much higher doses of radiation than those on Mercury, Gemini, Apollo, or the Space Shuttle. The average dose to the eyes for those astronauts was around 90 mSv. None of the other missions had an average lens dose higher than 15 mSv. This probably reflects the longer amount of time spent in space on the Skylab and Mir missions, and possibly the construction and orientation of Skylab and Mir.

FURTHER READING:
• The new paper on Galactic Cosmic Radiation and Alzheimer’s disease
• An introduction to the space radiation environment
• NASA primer on cosmic rays
• A 2006 essay in The Lancet, written by Francis Cucinotta, about cancer risk and Galactic Cosmic Rays
• Cucinotta's 2001 paper on cataracts in astronauts
• A 2004 NASA Science News piece that also explores cataracts in astronauts

Losing a mom to cancer soon after becoming one

Xeni Jardin — Thu, 03 Jan 2013 22:45:14 +0000

Amy Joyce writes about losing her mother to cancer, not long after she became a mom herself. "When I started thinking about writing about losing my mom, I thought I would be able to fill pages with what exactly has been lost. But it sort of comes down to one thing that my wise 3-year-old said recently, when he didn’t want me to leave his room after a prolonged bath-books-bed routine. He grabbed my arm and wouldn’t let go and whined: 'But I want you forever!'" (HT: @aileengraef)