Update: Make your own!—XJ
I was diagnosed with breast cancer in December, 2011. In January 2012, I began treatment. Chemo, surgery, radiation.
When I finished 6 weeks of daily radiation, the last of my primary treatment round, I tweeted about this milestone and my friend Michael Pusateri said I deserved a medal. Well, Michael's the kind of guy who puts a medal where his mouth is: he made me one. I love it, and I am grateful and proud. I want to wear it every single day for the rest of my life.
Many of us who have cancer laughed and shook our heads. Yes, people in America do die because of lack of health insurance, and because having health insurance is not a guarantee that you will receive affordable care.
Romney is absolutely right, people who are uninsured don't have to die in their apartments. They can indeed be rushed to a hospital, and the hospital is obligated to treat them. It's what he didn't say, and likely doesn't understand because he simply can't relate to 47 percent of us, that is actually more important: many of the uninsured die in the hospital, in the emergency room, because they could not afford to get care earlier when it might have saved their lives. Instead of going back home to their apartments, many of them, unfortunately, go to the morgue.
Marijuana is currently classified in the US as a Schedule I controlled substance: no medically accepted use, despite ample evidence to the contrary.
Ira Flatow's syndicated public radio program Science Friday has a segment out about next week's planned arguments to a federal appeals court by pro-pot advocacy org Americans for Safe Access, in hopes of relaxing federal restrictions.
Disclosure: I'm a cancer patient, I use pot for medical purposes, and I'm strongly in favor of legalization and easier access for seriously ill people (and honestly, who cares, everyone else too).
Comedian and writer Tig Notaro was recently diagnosed with breast cancer. On the Oct. 2 "Professor Blastoff" podcast, she announced that she has undergone a double mastectomy, and there is currently no known cancer in her body. She also spoke about her experience on "Fresh Air" this week.
I note that a number of news outlets are reporting about her post-treatment (?) phase as "cured," or "cancer-free," and wince at that language because the disease is never that simple, and those terms imply something that we hope for but cannot guarantee. But it sounds like her course of treatment was successful and that she is in an excellent place.
I am not glad Notaro has cancer. But I am glad people with cancer now have someone like Tig to point to all that is laughable, and all that is darkly humorous, about the experience of being a person with cancer.
In Marine Times, a Gannett newspaper targeting people in the Marine Corps and their families, an article for "Pinktober" (pink-ribbonny breast cancer awareness month, bleargh) about the high rate of breast cancer among men and women in the military. There are a number of theories as to why the breast cancer rates are so high, and a cluster of the disease affecting males at Camp Lejeune are a particularly vexing science mystery. "Researchers with the CDC are preparing a study that will try to determine whether contaminated drinking water at the Marine Corps’ largest base on the East Coast caused dozens of male Marines, sailors and family members to get breast cancer." Read more: Alarming breast cancer rates among troops (Marine Corps Times). Mother Jones covered this in a recent issue, also.
Cancer survivor Lani Horn, who helped me through some painful times during my cancer treatment, writes in a piece for kveller.com about anger, justice, and the search for deeper meaning in the Jewish holy days. She talks about a moment of clarity during a workshop for survivors, where she witnessed much talk about "making meaning out of the cancer experience, deepening our gratitude for the ordinary, becoming more compassionate." Snip:
After losing my brother, two breasts, and almost three years of my life to illness and hospitals, I was over these platitudes. I stood up to speak. “This is all fine. I get it. But my problem is that I am mad at God.” I even talked about the Unetanah Tokef, which had been a grueling part of the High Holiday liturgy since Jeremy died. Who shall live and who shall die?
A surge went through the room. I had uttered the unspeakable. Afterwards people came up to thank me for my honesty. One was a hospice chaplain, himself a cancer survivor.
“Remember,” he said, “there is a such thing as holy anger. Think of the prophets. Anger can be a spiritual feeling.”
For the first time, I did not feel like my anger separated me from God. It was an honest description of my relationship.
Yes, I was angry. Who shall live and who shall die? Why him and not me? And why him at all?
Read the rest: Rethinking Who Shall Live & Who Shall Die (Raising Kvell)
(Image: Dad's Grave's Broken Headstone at the Jewish Cemetery in Mumbai, a Creative Commons Attribution Non-Commercial Share-Alike (2.0) image from Avi Solomon's photostream.)
After some four month of silence on Twitter, Kathy Bates returned to share news that she was diagnosed with breast cancer two months ago, and has undergone a double mastectomy. I felt an extra-strong twinge of sadness when I read Twitter replies from her fans wishing her a "speedy recovery." I get that line a lot, too. There's no such thing.
Science blogger Ed Yong whipped up this awesome graphic and made me a one-off tshirt to wear to radiation treatment for breast cancer.
Cancer patients, radiation oncologists, radiation therapists, and the people who love them all can make their own t-shirts and stickers with the JPEG if you are so inclined!
Catherine Baucom, a breast cancer surgeon in Louisiana, was on her way to a surgery at BRASS Surgery Center of Baton Rouge last Wednesday morning when she found herself caught in a complete traffic shutdown caused by a major accident. She handled it like a boss: the surgeon, who is also a cyclist, borrowed a pink bicycle and helmet decorated with Disney princesses from a nearby friend’s 7-year-old daughter, and she pedaled like hell.
Dr. Baucom remembered a friend that lived a few blocks from her position in the mayhem and made her way to his house. "Catherine called, she was outside my house. She said 'Hey do you have a bike?' I walked outside and said yea, its a kids bike," said Dr. Brian Barnett. After a quick test run, Dr. Baucom decided the bike was her only choice to get to the hospital. "I got the air pump out and aired the tires up as much as I could."
He gladly loaned her his seven year old daughter's bike and helmet and the nearly six foot tall surgeon resumed her journey to the surgery center.
"It was hot pink and small," Dr. Baucom said, describing the bike. "The helmet was pink with princesses." He added he was laughing so much he couldn't get video of her before she peddled away. "But she did utilize the plastic basket on front, to put her cell phone in. Showed her experience with the bike."
Police stopped her, then when she explained what was going on, they escorted her to the hospital. More: Surgeon rides child's bike to get thru traffic nightmare (WLOX.com). More at local CBS affiliate WAFB.
(HT: Jim Maltese)
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.
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.
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.
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.
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:
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.
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.
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."
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.
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.
[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.
Read the rest