kottke.org posts about cancer
I don't quite know what I'm doing to myself these days. Last night was an episode of The Americans in which a marriage was ending, another family was trying to keep itself intact, and a young boy struggles to move on after his entire family dies. This morning, I watched an episode of Mad Men in which a mother tries to reconcile her differences with her daughter in the face of impending separation. And then, the absolute cake topper, a story by Matthew Teague that absolutely wrecked me. It's about his cancer-stricken wife and the friend who comes and rescues an entire family, which is perhaps the truest and most direct thing I've ever read about cancer and death and love and friendship.
Since we had met, when she was still a teenager, I had loved her with my whole self. Only now can I look back on the fullness of our affection; at the time I could see nothing but one wound at a time, a hole the size of a dime, into which I needed to pack a fistful of material. Love wasn't something I felt anymore. It was just something I did. When I finished, I would lie next to her and use sterile cotton balls to soak up her tears. When she finally slept, I would slip out of bed and go into our closet, the most isolated room in the house. Inside, I would wrap a blanket around my head, stuff it into my mouth, lie down and bury my head in a pile of dirty clothes, and scream.
There are very specific parts of all those stories that I identify with. I struggle with friendship. And with family. I worry about my children, about my relationships with them. I worry about being a good parent, about being a good parenting partner with their mom. How much of me do I really want to impart to them? I want them to be better than me, but I can't tell them or show them how to do that because I'm me. I took my best shot at being better and me is all I came up with. What if I'm just giving them the bad parts, without even realizing it? God, this is way too much for a Monday.
Oh, this sounds fantastic: PBS is set to air a six-hour documentary series, Cancer: The Emperor of All Maladies, starting at the end of March. How have I not heard about this before today?
This "biography" of cancer covers its first documented appearances thousands of years ago through the epic battles in the 20th century to cure, control and conquer it, to a radical new understanding of its essence. The series also features the current status of cancer knowledge and treatment -- the dawn of an era in which cancer may become a chronic or curable illness rather than its historic death sentence in some forms.
The series is based on Siddhartha Mukherjee's The Emperor of All Maladies: A Biography of Cancer, which is one of the most interesting books I've read in the past few years. Ken Burns is executive producing and Barak Goodman is directing.
Thanks to Sarah Klein at Redglass Pictures for letting me know about this. Redglass created a pair of videos for the series featuring Terrence Howard and Ken Jeong talking about their experiences with cancer.
Update: All three parts of the series are available on the PBS site for the next two weeks or so.
Two years ago, Angelina Jolie wrote in the NY Times1 about her choice to have a preventive double mastectomy. Today, she is back with an update on her choice to have another elective preventive surgery, the removal of her ovaries and fallopian tubes.
Two weeks ago I got a call from my doctor with blood-test results. "Your CA-125 is normal," he said. I breathed a sigh of relief. That test measures the amount of the protein CA-125 in the blood, and is used to monitor ovarian cancer. I have it every year because of my family history.
But that wasn't all. He went on. "There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer." I took a pause. "CA-125 has a 50 to 75 percent chance of missing ovarian cancer at early stages," he said. He wanted me to see the surgeon immediately to check my ovaries.
I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn't live to see my children grow up and to meet my grandchildren.
I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.
A week ago, Paul Kalanithi, who was 37, died from lung cancer. He had recently finished his neurosurgery residency at Stanford and was a father to an infant daughter.
He was also a writer. If you haven't read his "How Long Have I Got Left?" or "Before I Go," you should.
In this video, he talks about how time changes as you face your mortality. "Clocks are now kind of irrelevant to me," he says. "Time, where it used to have kind of a linear progression feel to it, now feels more like a space."
Cord Jefferson with a beautiful piece about his mother, illness, and the importance and difficulty of being kind.
I'd just returned home from a meeting when she called again. It had been only a few hours since we'd last talked and, as she stammered when I picked up, my heart sank with the anticipation of more bad news. "I didn't tell you everything I wanted to earlier," she said after gathering her tongue. "I wanted to say that I'm scared. I know you can't do anything to change this, but it makes me feel better to let you know that I'm afraid."
In his mid-20s, James Golding was diagnosed with cancer. In the hospital, he weighed 84 pounds and was given a 5% chance of living. Five years later, he embarked on a journey to France to break the record for most distance ridden on a bike in 7 days. This video follows Golding through his record-breaking attempt.
The video was produced by the same team that did the lovely Experiments in Speed video.
In a clinical trial at the Mayo Clinic, a woman with a type of blood cancer called myeloma was given an injection of measles virus large enough to innoculate 10 million people and has been "completely cleared" of her cancer.
So, as part of a two-patient clinical trial, doctors at the Mayo Clinic injected Erholtz with 100 billion units of the measles virus -- enough to inoculate 10 million people.
Her doctor said they were entering the unknown.
Five minutes into the hour-long process, Erholtz got a terrible headache. Two hours later, she started shaking and vomiting. Her temperature hit 105 degrees, Stephen Russell, the lead researcher on the case, told The Washington Post early Thursday morning.
"Thirty-six hours after the virus infusion was finished, she told me, 'Evan has started shrinking,'" Russell said. Over the next several weeks, the tumor on her forehead disappeared completely and, over time, the other tumors in her body did, too.
The cancer of the other person in the trial was unaffected and larger randomized trials still have to be performed, but this is encouraging news. Between this and the remission of cancer using HIV, it looks like viral therapy has a real shot at being a powerful weapon in fighting cancer.
Peter Bach, a cancer doctor, writes about losing his wife to cancer.
The streetlights in Buenos Aires are considerably dimmer than they are in New York, one of the many things I learned during my family's six-month stay in Argentina. The front windshield of the rental car, aged and covered in the city's grime, further obscured what little light came through. When we stopped at the first red light after leaving the hospital, I broke two of my most important marital promises. I started acting like my wife's doctor, and I lied to her.
I had just taken the PET scan, the diagnostic X-ray test, out of its manila envelope. Raising the films up even to the low light overhead was enough for me to see what was happening inside her body. But when we drove on, I said, "I can't tell; I can't get my orientation. We have to wait to hear from your oncologist back home." I'm a lung doctor, not an expert in these films, I feigned. But I had seen in an instant that the cancer had spread.
The last sentence here really got to me:
Our life together was gone, and carrying on without her was exactly that, without her. I was reminded of our friend Liz's insight after she lost her husband to melanoma. She told me she had plenty of people to do things with, but nobody to do nothing with.
Bach's discussion of treatment options reminded me of Siddhartha Mukherjee's The Emperor of All Maladies, which is one of my favorite books of recent years. I was also reminded of how doctors die.
In a unanimous decision, the US Supreme Court ruled today that human genes cannot be patented.
The case involved Myriad Genetics Inc., which holds patents related to two genes, known as BRCA1 and BRCA2, that can indicate whether a woman has a heightened risk of developing breast cancer or ovarian cancer.
Justice Clarence Thomas, writing for the court, said the genes Myriad isolated are products of nature, which aren't eligible for patents.
The high court's ruling was a win for a coalition of cancer patients, medical groups and geneticists who filed a lawsuit in 2009 challenging Myriad's patents. Thanks to those patents, the Salt Lake City company has been the exclusive U.S. commercial provider of genetic tests for breast cancer and ovarian cancer.
The challengers argued the patents have allowed Myriad to dictate the type and terms of genetic screening available for the diseases, while also dissuading research by other laboratories.
Fuck yes. A defect in her BRCA1 gene is what caused Angelina Jolie to recently have a preventive double mastectomy. (via @tylercowen)
In this morning's NY Times, Angelina Jolie writes about her decision to have a preventive double mastectomy to hopefully ward off cancer.
My mother fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.
We often speak of "Mommy's mommy," and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a "faulty" gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
It happens that just last night I read about the BRCA-1 gene in Siddhartha Mukhergee's excellent biography of cancer, The Emperor of All Maladies. This part is right near the end of the book:
Like cancer prevention, cancer screening will also be reinvigorated by the molecular understanding of cancer. Indeed, it has already been. The discovery of the BRCA genes for breast cancer epitomizes the integration of cancer screening and cancer genetics. In the mid-1990s, building on the prior decade's advances, researchers isolated two related genes, BRCA-1 and BRCA-2, that vastly increase the risk of developing breast cancer. A woman with an inherited mutation in BRCA-1 has a 50 to 80 percent chance of developing breast cancer in her lifetime (the gene also increases the risk for ovarian cancer), about three to five times the normal risk. Today, testing for this gene mutation has been integrated into prevention efforts. Women found positive for a mutation in the two genes are screened more intensively using more sensitive imaging techniques such as breast MRI. Women with BRCA mutations might choose to take the drug tamoxifen to prevent breast cancer, a strategy shown effective in clinical trials. Or, perhaps most radically, women with BRCA mutations might choose a prophylactic mastectomy of both breasts and ovaries before cancer develops, another strategy that dramatically decreases the chances of developing breast cancer.
Radical is an understatement...what a tough and brave decision to make. Again from the book, I liked this woman's take on it:
An Israeli woman with a BRCA-1 mutation who chose this strategy after developing cancer in one breast told me that at least part of her choice was symbolic. "I am rejecting cancer from my body," she said. "My breasts had become no more to me than a site for my cancer. They were of no more use to me. They harmed my body, my survival. I went to the surgeon and asked him to remove them."
The genetic testing company 23andme screens for three common types of mutation in the BRCA1 or BRCA2 genes:
Five to 10 percent of breast cancers occur in women with a genetic predisposition for the disease, usually due to mutations in either the BRCA1 or BRCA2 genes. These mutations greatly increase not only the risk for breast cancer in women, but also the risk for ovarian cancer in women as well as prostate and breast cancer among men. Hundreds of cancer-associated BRCA1 and BRCA2 mutations have been documented, but three specific BRCA mutations are worthy of note because they are responsible for a substantial fraction of hereditary breast cancers and ovarian cancers among women with Ashkenazi Jewish ancestry. The three mutations have also been found in individuals not known to have Ashkenazi Jewish ancestry, but such cases are rare.
23andme testing kits are only $99.
Update: Two things. First, and I hope this isn't actually necessary because you are all intelligent people who can read things and make up your own minds, but let me just state for the official record that you should never never never never NEVER take medical advice, inferred or otherwise, from celebrities or bloggers. Come on, seriously. If you're concerned, go see a doctor.
Two: I have no idea what the $99 23andme test covers with regard to BRCA1 and BRCA2 gene mutations beyond what the company states. The most comprehensive test for BRCA1 and BRCA2 mutations was developed by a company called Myriad Genetics and costs about $3000. Myriad has patented the genes, a decision that has been sharply criticized and is currently being decided by the Supreme Court.
But many doctors, patients and scientists aren't happy with the situation.
Some are offended by the very notion that a private company can own a patent based on a gene that was invented not by researchers in a lab but by Mother Nature. Every single cell in every single person has copies of the BRCA1 and BRCA2 genes.
Myriad officials say they deserves the patent because they invested a great deal of money to figure out the sequence and develop "synthetic molecules" based on that sequence that can be used to test the variants in a patient.
"We think it is right for a company to be able to own its discoveries, earn back its investment, and make a reasonable profit," the company wrote on its blog.
I do know the 23andme test covers something related to the BRCA1 and BRCA2 mutations...a friend of a friend did the 23andme test, tested positive for the BRCA1 mutation, and decided to have a preventive double mastectomy after consulting her doctor and further tests. (thx, mark, allison, and ★spavis)
Sad news from Chicago: Roger Ebert's cancer has returned and he's taking what he calls a "leave of presence" to focus on recovery and a few different projects.
What in the world is a leave of presence? It means I am not going away. My intent is to continue to write selected reviews but to leave the rest to a talented team of writers handpicked and greatly admired by me. What's more, I'll be able at last to do what I've always fantasized about doing: reviewing only the movies I want to review.
At the same time, I am re-launching the new and improved Rogerebert.com and taking ownership of the site under a separate entity, Ebert Digital, run by me, my beloved wife, Chaz, and our brilliant friend, Josh Golden of Table XI. Stepping away from the day-to-day grind will enable me to continue as a film critic for the Chicago Sun-Times, and roll out other projects under the Ebert brand in the coming year.
Love that first sentence. Get well soon, Roger.
I'm currently reading The Emperor of All Maladies: A Biography of Cancer (which is excellent) and I'm up to the chapters on prevention, specifically the prevention of lung cancer through reduction of cigarette smoking. I had no idea cigarette smoking was so uncommon in the US as recently as 1870...but we caught up quickly.
In 1870, the per capita consumption in America was less than one cigarette per year. A mere thirty years later, Americans were consuming 3.5 billion cigarettes and 6 billion cigars every year. By 1953, the average annual consumption of cigarettes had reached thirty-five hundred per person. On average, an adult American smoked ten cigarettes every day, an average Englishman twelve, and a Scotsman nearly twenty.
For some context on that 3500/yr per person number (and the unbelievable 7000/yr Scottish rate), the current rate in the US is around 1000/yr and the highest current rate in the world is in Serbia at almost 2900/yr per person.
Long-time crossword puzzle builder John Graham (aka Araucaria) is dying of esophageal cancer and used a crossword puzzle in the Guardian to reveal the news.
Above cryptic crossword No 25,842 sat a set of special instructions: "Araucaria," it said, "has 18 down of the 19, which is being treated with 13 15".
Those who solved the puzzle found the answer to 18 was cancer, to 19 oesophagus, and to 13 15 palliative care. The solutions to some of the other clues were: Macmillan, nurse, stent, endoscopy, and sunset.
Speaking from his home in Cambridgeshire, Araucaria said this particular puzzle had not taken him very long, adding that a crossword had seemed the most fitting way to make the announcement.
"It seemed the natural thing to do somehow," he said. "It just seemed right."
Over the past few years, we've seen an endless parade of stories debunking the value of many of the products that line the shelves of our local pharmacies. Well, here's a different kind of story. A massive study that included more than 15,000 men and lasted more than 13 years found that taking a daily multivitamin (in this case Centrum Silver) reduced the risk of cancer. It looks like there's something to taking one multivitamin as opposed to swallowing high doses of individual vitamins.
In No Evidence of Disease, Maciej Cegłowski writes about his girlfriend's cervical cancer and the appearance of a new friend in her life, fellow cancer patient Stephanie. Except that, well, that's not the whole story.
Cancer comes with an entourage: fear, loneliness, and isolation. Diane didn't go to the makeup event expecting to make a new friend, but it was a way to get out of the house. She came home excited about having met Stephanie.
Stephanie was ten years younger than Diane. Her illness was acute myeloid leukemia (AML), a type of blood cancer in which cancerous precursor cells completely take over the bone marrow. Steph had gotten her diagnosis while studying abroad in Spain, and had been treated there long enough to put her into remission and send her home. Now her life was on hold, and the cancer was coming back.
Her long-term prognosis was poor. Steph was reticent in talking about it straight out, but after she and Diane became better friends, it became clear that she did not expect to survive a year. Her only hope lay in a difficult and risky transplant procedure. I couldn't imagine having to face this at 23, but of course no one gets to make the choice.
Maciej is a great writer and this is a crazy-ass story and I don't know exactly what you're supposed to feel after reading this piece (sad? mad? defeated?), but you'll definitely feel something. (via @sippey)
Internet sensation Amit Gupta was recently diagnosed with leukemia and needs a bone marrow transplant. Problem is that he needs a transplant from someone of South Asian descent.
To aid him in his fight, Amit is going to need a bone marrow transfusion. Unlike blood transfusions, finding a genetic match for bone marrow that his body will accept is no easy task. The national bone marrow registry has 9.5 million records on file, yet the chances of someone from South Asian descent of finding a match are only 1 in 20,000.
This is where we come in. We're going to destroy those odds.
How? By finding and registering as many people of South Asian descent as we possibly can.
Tests are easy -- a simple swab of the cheek. If someone is determined to be a match, that person would have to be willing to undergo an outpatient procedure in which marrow is extracted from bones in the back by a special needle. It's not a fun procedure, but it's not dangerous either. And doing it could save a life.
If you're interested in helping, read on.
This crazy-experimental therapy uses a modified HIV virus to attack cancer cells in humans. Only three people have tried this therapy for chronic lymphocytic leukemia; two are in complete remission and one showed improvement.
Doctors removed a billion of his T-cells -- a type of white blood cell that fights viruses and tumors -- and gave them new genes that would program the cells to attack his cancer. Then the altered cells were dripped back into Mr. Ludwig's veins.
At first, nothing happened. But after 10 days, hell broke loose in his hospital room. He began shaking with chills. His temperature shot up. His blood pressure shot down. He became so ill that doctors moved him into intensive care and warned that he might die. His family gathered at the hospital, fearing the worst.
A few weeks later, the fevers were gone. And so was the leukemia.
There was no trace of it anywhere -- no leukemic cells in his blood or bone marrow, no more bulging lymph nodes on his CT scan. His doctors calculated that the treatment had killed off two pounds of cancer cells.
A year later, Mr. Ludwig is still in complete remission. Before, there were days when he could barely get out of bed; now, he plays golf and does yard work.
Rates of breast cancer and melanoma in humans are on the rise and appear to favor the left side of the body. A suspected cause is that the box springs in our beds act as antennas to focus the EM radiation from FM radio and broadcast television directly into the left sides of our bodies. No, really:
Electromagnetic waves resonate on a half-wavelength antenna to create a standing wave with a peak at the middle of the antenna and a node at each end, just as when a string stretched between two points is plucked at the center. In the U.S. bed frames and box springs are made of metal, and the length of a bed is exactly half the wavelength of FM and TV transmissions that have been broadcasting since the late 1940s.
Update: So, you know when you run across something about some current scientific theory or hypothesis on a blog or in a magazine or newspaper or even in a scientific journal, there's a fair chance that whatever the article says is misleading, misstated, or even incorrect. That's just how it is and if you didn't know, now you do. Take this stuff with a grain of salt. It's why I use phrases like "suspected cause" instead of something like "box springs and FM radio proven to cause cancer".
I don't post things like this because I think they're right, I post them because I think they are interesting. The geometry of TV signals and box springs causing cancer on the left sides of people's bodies in Western countries...that's a clever bit of hypothesizing, right or wrong.
In this case, an organization I know nothing about (Vetenskap och Folkbildning from Sweden) says that Olle Johansson, one of the researchers who came up with the box spring hypothesis, is a quack. In fact, he was "Misleader of the year" in 2004. What does this mean in terms of his work on box springs and cancer? I have no idea. All I know is that on one side you've got Olle Johansson, Scientific American, and the peer-reviewed journal (Pathophysiology) in which Johansson's hypothesis was published. And on the other side, there's Vetenskap och Folkbildning, a number of commenters on the SciAm post, and a bunch of people in my inbox. Who's right? Who knows. It's a fine opportunity to remain skeptical. (thx, tom)
Some scientists have developed a promising method for targeting and destroying individual cancer cells without harming the tissue around them. Tiny (like nano tiny) gold-plated iron-nickel discs are attached to cancer-seeking antibodies. The antibodies attach themselves to the cancer cells and when an alternating magnetic field is applied, the metal nano-discs vibrate and literally shake the cancer cells to death.
Since the antibodies are attracted only to brain cancer cells, the process leaves surrounding healthy cells unharmed. This makes them unlike traditional cancer treatment methods, such as chemotherapy and radiation, which negatively affect both cancer and normal healthy cells.
This was a tough series of photos to get through: The Bride Was Beautiful.
Katie Kirkpatrick, 21, held off cancer to celebrate the happiest day of her life. [...] Her organs were shutting down but it would not stop her from marrying Nick Godwin, 23, who was in love with Katie since 11th grade.
The last photo is just heartbreaking. (via cup of jo)
The New Yorker profiles chef Grant Achatz this week. The piece focuses on his restaurant, Alinea, and the battle with tongue cancer that threatened his life, and worse to Achatz, his career and passion. The loss of his sense of taste had a bright side:
Because his ability to taste has come back over time, Achatz feels that he is understanding the sense in a new way -- the way you would if you could see only in black-and-white and, one by one, colors were restored to you. He says, "When I first tasted a vanilla milkshake" -- after the end of his treatment -- "it tasted very sweet to me, because there's no salt, no acid. It just tasted sweet. Now, introduce bitter, so now I'm understanding the relationship between sweet and bitter -- how they work together and how they balance. And now, as salt comes back, I understand the relationship among the three components."
In the Diner's Journal, Pete Wells contrasts Achatz with another chef that the New Yorker recently profiled, Momofuku's David Chang.
In March, The New Yorker published a profile of a chef who was about to open a restaurant. The chef complained about his health, worried about the future and cursed as if he had slammed his thumb in a car door.
On Monday, the magazine will publish a profile of another chef. Last year a doctor told this chef that he had advanced oral cancer and that unless he had his tongue cut out, he would be dead within a few months. According to The New Yorker, the chef reacted as if he'd just been handed a particularly challenging logic problem.
The point of the contrast is not to marginalize Chang's problems or his reaction to them but to demonstrate what a different approach Achatz takes to kitchen work than the typical (stereotypical?) Anthony Bourdainity of the restaurant kitchen.
The NYer article includes an online companion, a slideshow of photos of the latest menu items at Alinea and chef Achatz, looking very Seth Bullock.
Good news: Alinea's Grant Achatz announces that his cancer is in remission. Achatz found out earlier this year that he had cancer of the mouth and instead of the traditional surgery route, he worked with his doctors on a treatment that would allow him to continue to cook, his profession and passion.
Reconsidering Rachel Carson's Silent Spring: it was an influential book...too bad the science was all wrong. "She cited scary figures showing a recent rise in deaths from cancer, but she didn't consider one of the chief causes: fewer people were dying at young ages from other diseases (including the malaria that persisted in the American South until DDT). When that longevity factor as well as the impact of smoking are removed, the cancer death rate was falling in the decade before 'Silent Spring,' and it kept falling in the rest of the century."
Update: Scienceblogs' Tim Lambert has been following a campaign to discredit Carson and her book. More here and at Google. (thx, jim & paul)
Some have advised Roger Ebert not to attend his yearly film festival because of his changed physical appearance due to recent cancer surgery. Ebert says nuts to that...he may look a little strange, but his brain still works, his thumbs still go up and down, and he can type his columns just fine. "We spend too much time hiding illness. There is an assumption that I must always look the same. I hope to look better than I look now. But I'm not going to miss my festival." I love Roger Ebert.