For Aileen.

My boyfriend Miles O'Brien lost his beloved little sister to breast cancer today. She was only 46 years old.

They both lost their mom to it a few weeks after I was diagnosed with the same disease.

There is so much to say about what a beautiful soul Aileen was, what a cruel and ugly and brutal disease breast cancer is, how torturous treatment is, how enraging it is that science and medicine have nothing better to offer us yet, how unjust the financial devastation a diagnosis brings to so many women is—and, most of all, what it means to those of us with cancer to have the kind of support in our lives that men like Miles provide, selflessly and heroically and with unconditional love.

But for now, I just want the world to see, respect, and remember this photograph Miles took of his sister this morning, shortly before her life ended. He brought her dog Jethro from her home to the hospice house so Jethro could also say goodbye.

Gone but still loved by all. RIP Aileen Crimmings O'Brien Graef - 10/30/64-8/21/2012

She is survived by two beautiful daughters, Katie and Aileen, whom she loved very much.

And, their dog Jethro.

Update: Miles and her daughters suggest that donations in honor of Aileen be sent to Visiting Nurses Association of the Treasure Coast (@vnatc), 1110 35th Lane. Vero Beach, FL 32960. This is the hospice center that cared for Aileen in her final days. Services at Strunk Funeral Home, 916 17th Street, Vero Beach, FL 32960. If you wish to send cards or flowers, this is the best address.

Image link (photo: Miles O'Brien).

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On quack cancer cures, and "alternative medicine" as religion

I loved Science Blogs contributor Orac before I was diagnosed with cancer. I love him a whole lot more now. I'll get to why in a moment, but I want to share something personal first (cracks knuckles).

Well-meaning friends have suggested I try coffee enemas and Burzynskian "antineoplastons" and oxygen therapy to cure my breast cancer; others have told me the reason some of my cells went mutinous is because I offended the Great Invisible Beardy Man in the Sky.

Dude, I've heard it all.

I am active on Twitter in talking about cancer, sharing the experience of my treatment (which fucking sucks), and connecting with fellow persons with cancer.

One of those fellow travelers yesterday tweeted this link, which praises the work of "ND" Judy Seeger. In alternative healing parlance, ND stands for naturopathic doctor. I like Orac's definition better: "not a doctor."

Let me be blunt: I think people who sell fake cancer cures are murderers.

I spoke about the content of that blog post with my radiation oncologist yesterday, after I lay down under the linear accelerator for another daily (yep, daily) blast of rays to kill any remaining lurking cells that might want to off me a few years down the road.

I hate radiation treatment, by the way. HATE IT. But I hate cancer more.

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Tig Notaro joked about her breast cancer diagnosis during an epic set at Largo -- and killed

Standup comedian Tig Notaro took the stage Friday night at Largo as part of her farewell to Los Angeles as she prepares to move to New York to begin work on Amy Schumer's new show. But that wasn't all she was announcing: she revealed that following a string of personal tragedies (a terrible bout of pneumonia, her mother's death, and a breakup), she had been diagnosed with breast cancer. In both breasts. After starting her set with jokes about her diagnosis (“You have a lump.” “No, doctor, that’s my breast.”), she said she should maybe do some of her more light-hearted material, but someone yelled out: “NO. ABSOLUTELY NOT. THIS IS FUCKING INCREDIBLE.” She was killing it. I wasn't there (Kira Hesser was), but her fellow performers -- Louis C.K., Bill Burr, and Ed Helms -- posted raves on Twitter. Notaro had prefaced her set by saying that "everything is going to be okay," which only goes to show: awesome people are awesome, and cancer sucks. (via Splitsider, Uproxx)

Cancer stem cells tracked

In the journal Nature, interesting stem cell news that could lead to more effectively-targeted chemotherapy for cancer patients. Part of why chemo is so brutal is that it targets all fast-growing cells within the body—the ones that want to kill you, and ones that keep you alive, all are attacked. I've been through it, and it's pretty awful. Snip:

Cancer researchers can sequence tumour cells’ genomes, scan them for strange gene activity, profile their contents for telltale proteins and study their growth in laboratory dishes. What they have not been able to do is track errant cells doing what is more relevant to patients: forming tumours. Now three groups studying tumours in mice have done exactly that. Their results support the ideas that a small subset of cells drives tumour growth and that curing cancer may require those cells to be eliminated.

It is too soon to know whether these results — obtained for tumours of the brain, the gut and the skin — will apply to other cancers, says Luis Parada at the University of Texas Southwestern Medical Center in Dallas, who led the brain study. But if they do, he says, “there is going to be a paradigm shift in the way that chemotherapy efficacy is evaluated and how therapeutics are developed”. Instead of testing whether a therapy shrinks a tumour, for instance, researchers would assess whether it kills the right sorts of cell.

More: Cancer stem cells tracked : Nature News & Comment.

Photo: (Nature.com/G. DRIESSENS). Researchers can now trace the cell lineage within a growing tumor. In this skin tumor, the red cells all originated from one stem cell.

Cancer and music "that makes me want to live"—Brian Mansfield

USA Today's Nashville music critic Brian Mansfield was diagnosed with colon cancer at age 48. In a beautiful piece at USA Today, he describes a kind of "cancer honeymoon" just after his diagnosis in which he felt hopeful and eager to make changes in his life. That ended abruptly when further information about his disease showed that things would be harder. Read the whole piece, I don't want to spoil the story for you here, but this part really resonated with me:

Cancer has changed the way I hear music, more than any other life event except my marriage. Songs I once appreciated only on a surface level now strike deep at the core of my soul. Some inspire me; some terrify me. Others that I might have liked before, I've got no use for now. I've also got more time to listen, whether it's during my morning exercise time or while lying in a hospital bed.

These songs form part of the soundtrack to my cancer story...

Man. Same here, Brian. Before my mastectomy, someone on Twitter told me that some study showed that patients who were able to bring a CD of music to the operating room, to be played during their surgery, had better recovery outcomes. I made just such a CD and brought it to the hospital. Didn't end up playing it, and I recovered well, but I share this anecdote because there have also been certain songs that I play to and from important medical appointments, certain songs I've cried to or just listened over and over to, to jolt me out of the awful darkness that comes with cancer. And I'm going to play that "surgery" CD when I drive to radiation treatment this morning.

Anyway, Brian's Spotify playlist is here.

And read the rest of this story: My Semicolon Life: Cancer honeymoon's over. (USATODAY.com)

The track at the top of his list is embedded above: "Dance in the Graveyard," by Delta Rae. Download it here, and the lyrics are here, and pasted below:

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Poop Strong: Cancer patient whose costs exceeded insurance cap wins victory, via Twitter

Arijit, 31, is graduate student in Arizona who was diagnosed about a year and a half ago with stage IV colon cancer. He endured multiple surgeries, and grueling rounds of chemotherapy. Then, in February, 2012, the cost of his treatment exceeded the lifetime limit on his graduate student health plan, which is managed by Aetna.

His coverage was terminated. His cancer was not.

He launched what we cancer patients sometimes refer to as an internet lemonade stand: a site called Poop Strong (a light-hearted parody of "Livestrong"). At poopstrong.org, he invited well-wishers to make a donation or buy schwag, with all proceeds going to his healthcare.

But, big news today, as his pal Kirk Caron tells Boing Boing,

In the six months between when he was dropped and when he'll be picked up by another student health plan, he's been looking at well over $100K in medical bills for his treatments. In addition to updates about his own condition and the state of Poop Strong, Arijit's been tweeting (naturally) about the state of health insurance, and recently, Aetna got involved. The conversation (as Twitter convos tend to do) sort of spirals out from the main thread between Arijit and Aetna.

That's an understatement! Arijit ended up debating directly with the CEO of Aetna, Mark T. Bertolini. The tl;dr: Aetna, and Mr. Bertolini, agreed in the end to cover the full extent of bills that accrued since Arijit was dropped from insurance (about $118,000).

"The system is broken," said Bertolini. "I really am trying to fix it."

Arijit is redirecting all of the donations he received the University of Arizona Cancer Center Patient Assistance Fund and The Wellness Community (Arizona), to directly assist other people with cancer who cannot pay for the life-saving medical treatments they need.

I spoke with Arijit today, and will be publishing a transcript/audio of our conversation soon. He's a really cool guy, and he has some insights from this experience that I think everyone should hear. It looks like Arijit is covered, for now, but the system is still broken. The debate over health care costs has become a political football—but for people like me and Arijit and everyone else in America who isn't in the 1%, health care costs are literally a matter of life and death. No one should suffer or die because they can't afford medical treatment. It really is that simple.

Arijit's friend Jen Wang created a Storify of the twitter exchange between Arijit, Aetna's PR reps, and Aetna's CEO. You can read this below.

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A rant on marijuana dispensaries, and the quest for a living wage in LA

Over at Dangerous Minds, Richard Metzger has an epic rant in response to a recent Los Angeles City Council vote to close medical cannabis dispensaries in the city (there are many). I use pot to help with the side effects of cancer treatment. I didn't use pot before I was diagnosed with cancer. The City Council's suggestion that "seriously ill" people like me should just "grow their own" is very let-them-eat-cake-y. Cancer patients weak and nauseous from chemo can barely make a ham sandwich, let alone cultivate medicinal herb in the quantity and quality required to be useful. They might as well ask us to synthesize our own chemotherapy drugs. Metzger isn't a cancer patient, but he has great arguments here. Snip:

I live in an area of the city near the so dubbed “Green Mile,” a stretch known for its numerous, highly visible cannabis dispensaries. Within walking distance, there are approximately twelve dispensaries. Take a slightly longer walk and that number rises at least threefold.

By contrast, there are but two Starbucks, one McDonald’s, One Burger King, one KFC, one Jack in a Box, two Subways, two 7-Eleven stores and no Carl Jrs. It goes without saying that these are minimum wage jobs, whereas the average wage at a pot dispensary is $20 per hour.

In five years of living in this part of Los Angeles, I’ve seen every single one of these places pop up and what changes the neighborhood has gone through in that same period of time. Not only that, I have PERSONALLY visited almost all of them.

Here’s what I’ve noticed:

Since the recession, there have been very, very few new retail businesses that have opened along the “Green Mile” other than pot dispensaries. A few things, but not many. In every case, they are inhabiting real estate that was not being used, and that had not been used in some time. A lot of these previously empty buildings got much needed paint jobs, let’s just say, and many long empty buildings were rehabilitated by the dispensary owners.

I have seen no appreciable rise or fall in the neighborhood crime rate and I am sure the local police would probably agree. There is no discernible difference. No change. None.

More: Dangerous Minds | The Green Mile: A perspective from deep in LA’s busiest pot district on the weed ban vote

Woody Roseland, on life with cancer: "You Are Here" (video)

[Video Link] You may remember a previous Boing Boing post about Woody Roseland—specifically, about his spectacular "Shit Cancer Patients Say" video.

Man. I loved that video, and I love Woody. I've followed him on Twitter throughout my own cancer treatment. He inspires me and makes me laugh.

Here's a video of Woody speaking at TEDxMileHigh about his life with cancer.

So much of what he says rings true for me, too:

"When cancer stares you in the face, you learn who you are."

Breast cancer conversations on Twitter, visualized in real time

Here's a cool data viz project from GE that displays real-time conversational spreads about breast cancer on Twitter. (thanks, Laura Hollister)

"Queen of Clown Porn" Hollie Stevens, 30, dies of breast cancer

Image: Hollie Stevens, via Flickr.

The alt-adult performer known as Hollie Stevens (Twitter, Tumblr, Flickr, Wikipedia, MySpace) has died of breast cancer.

In addition to her work in indie pornography (including "clown porn", NSFW link), she was also a model for, and contributor to, the weirdo horror-rotica zine Girls and Corpses.

From an early account of Hollie's story by Vanessa Pinto at SF Weekly, it sounds like the lack of access to affordable health care (and health insurance) was a significant factor in the case of Hollie, a freelance creative based in San Francisco:

She was no different than a lot of us when we were young who believe we're invincible. So when this very young healthy woman noticed a lump on her breast, she let it go at first.

"I noticed it and paid attention to it, but going to the doctor is hard when you don't have insurance," says Stevens.

The lump didn't go away.

More from Vanessa Pinto, this time writing Hollie's obituary one year later:

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NYT series on genetically-targeted cancer treatments

When you have been diagnosed with cancer, as I have, you quickly grow accustomed to "friendly cancer spam." Friends, relatives, and well-meaning acquaintances routinely forward you a gazillion identical links to whatever this week's hot cancer news headline may be.

So it was for me with this New York Times story on Lukas Wartman, a leukemia doctor and researcher at Washington University who developed leukemia. As he faced death last Fall, his cancer genome was sequenced by his colleagues.

What was revealed then led to a treatment plan that targeted the specifics of his genetic makeup. And so far, according to Gina Kolata's report, that experimental treatment plan has been an amazing success. Snip:

Dr. Ley’s team tried a type of analysis that they had never done before. They fully sequenced the genes of both his cancer cells and healthy cells for comparison, and at the same time analyzed his RNA, a close chemical cousin to DNA, for clues to what his genes were doing.

The researchers on the project put other work aside for weeks, running one of the university’s 26 sequencing machines and supercomputer around the clock. And they found a culprit — a normal gene that was in overdrive, churning out huge amounts of a protein that appeared to be spurring the cancer’s growth.

Even better, there was a promising new drug that might shut down the malfunctioning gene — a drug that had been tested and approved only for advanced kidney cancer. Dr. Wartman became the first person ever to take it for leukemia.

And now, against all odds, his cancer is in remission and has been since last fall. While no one can say that Dr. Wartman is cured, after facing certain death last fall, he is alive and doing well.

Suffice it to say that this stuff is relevant to my interests. It is routine for breast cancer patients like me to receive genetic screening for the BRCA mutation, and sometimes a few additional known genetic factors. But there is so much that we do not know, and a growing sense that this infinite array of genetic unknowns could lead to more saved lives, and better quality of life for those of us who have been diagnosed with the disease.

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iPhone app makes a game of monitoring pain for young cancer patients

[Video Link] Canada's Hospital for Sick Children (aka SickKids) and the Cundari creative agency are developing a iPhone app called "Pain Squad" to help monitor and report physical pain and emotional wellness in young cancer patients. Snip from a post on Springwise:

Using the narrative of a police force hunting down pain, users are inducted as a rookie officer working on the case. Patients fill out a daily survey – which asks questions relating to whether they felt pain that day, how intense it was and its location – and can progress through the ranks of the force when they keep their records updated. The concept was created by Toronto-based media agency Cundari, who got stars from Rookie Blue and Flashpoint – two primetime cop shows in Canada – to appear in videos that are unlocked when patients do well and progress the narrative. By gamifying the process, the app gives patients an incentive to keep a daily journal of their pain. The app is still in the testing phase but SickKids hopes to release it later this year.

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The Bald Princess (a 4-year-old's drawing of Xeni, for women with cancer in chemo)

I've been blogging and tweeting about my experience in treatment for breast cancer, including what it's like to go through chemotherapy. The chemo drugs I received made all my hair fall out (not all kinds do, but mine did). I've been going around "commando," as people with cancer say—bald, no wigs. Scarves or hats only when it's too cold or sunny to go bare.

You do whatever works for you to get through this. Going around bare-headed is what works for me.

Julie Zwillich just tweeted me this fantastic drawing made for me by her four-year-old daughter. It's me. She calls it "The Bald Princess."

If you know a woman or girl receiving chemotherapy, maybe you'd like to share this with them, too. Good days always follow the bad.

State Dept. snubs blog of Foreign Service spouse in breast cancer treatment for using n-word: "nipple."

My pal Anthony Citrano points to this outrageous story, and says: "The State Department says their staff should blog about 'individual stories', but this bullshit about your new nipple is just too much."

The tl;dr: Jennifer Dinoia, who is married to a foreign service agent, maintained a family blog that was promoted on the State Department website. She wote about her experience in treatment for breast cancer. All was fine with the blog, and its inclusion in the State Dept.'s official blogroll, until she wrote a post detailing nipple construction after mastectomy.

From Ms. DiNoia's blog post, after she realized her story was no longer welcome:

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On Twitter, shared stories of moms, cancer, and loss

Yesterday was Mother's Day in the US. I spent the day at home in Los Angeles, still recuperating from chemo, gearing up for the next phase of my cancer treatment. After I called my mom on the East Coast to wish her a happy Mother's Day and thank her for all she has done, I shared a few thoughts on Twitter about moms and cancer. I invited my followers to do the same.

One by one, 140-character-length tributes came in about moms who survived cancer, moms who helped their kids through cancer, and kids who lost their moms to cancer. I retweeted a few, then a few more, but—they did not stop. A flood of personal testimonies to the power of motherhood in relation to cancer followed. I read every single one, and tried to share every single one with my followers.

Josh Stearns kindly collected many of them into a Storify: Mother's Day Memories of Love, Loss and Living With Cancer. It's embedded below.

Above, a photograph of me and my mom, the day before one of my chemo infusions. I draw a lot of strength from my mom. And you need all the strength you can get to get through this thing.

She adds a tribute of her own today:

My Mom died of melanoma (skin cancer) at 54. Her doctor never knew it was cancer until the autopsy. All of us (3 girls, 3 boys) still carry her spirit in our hearts.

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