Boing Boing 

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:

Read the rest

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.

Read the rest

Henna "crowns" for chemotherapy patients

Samaritan Magazine has a fun article here about Henna Heals, a charity based in Toronto, Canada that offers a free service to cancer patients undergoing chemotherapy: beautiful henna designs applied to their chemo-bald heads. The organization was created by photographer Frances Darwin, who also captures the resulting designs in photos. Snip:

The swirling, intricate drawings, which are safe, temporary and applied by skilled artists, command the eye to the head of the henna wearer, inspiring awe rather than pity while offering an alternative to wigs or hats. Perhaps more importantly, these henna "crowns" offer women suffering hair loss -- and the accompanying lost sense of femininity that brings -- a chance to feel uniquely lovely while inviting gentle dialog about a tricky subject.

When I began chemo as treatment for breast cancer, a number of friends suggested henna designs to me, too. I haven't done it yet, but I'm still chemo-bald... so it's not too late! Might be worth a trip up to Toronto to visit these guys. A beautiful project, and really pretty designs.

Cancer Patients Transformed By Gorgeous Henna Dome Designs | Samaritan Mag.

(Photo: Frances Darwin; model: Tara Schubert; henna: Darcy Vasudev. Link via Chris Woodfield)

"What Cancer Has Taught Me About Writing And Living"

Two weeks after historical fiction writer Anne Clinard Barnhill's debut novel was released, she was diagnosed with stage 3 endometrial cancer. She writes about how the diagnosis changed her, and about what the experience has taught her about writing and living:

Since then, I've done a six-week book tour across North Carolina, had a radical hysterectomy, gone on a blog tour and started chemo. Not exactly what I'd expected in what was supposed to be 'my' year.

At first, I didn't want to tell anyone about the disease, but that quickly became unfeasible; people were contacting me to do readings and I had to explain why I couldn't; my editor had been patiently awaiting my revisions to the second novel and I didn't want him to think I was dawdling; and, I figured it was something my agent should know. So, I went public. As I deal with the gritty life of coping with cancer, I've noticed some similarities between the writing life and living with cancer.

Read the rest here: BOOK PREGNANT: What Cancer Has Taught Me About Writing And Living.

(thanks, Lydia Netzer)

To do in California May 19-22: fight for medical marijuana

Now that you know my thoughts on medical cannabis for cancer patients, you'll understand why I think this is a noble cause. Patients gathering in Sacramento, May 19-22. On Monday May 21, public demonstration at the state capitol.

An inspirational needlepoint for those with cancer

A wonderful thing, made by Heather Beschizza (web, Twitter, happens to be married to this guy). I've been keeping this on my desk for some time, but wanted to share it with the rest of the world, too.

“My breast has fallen off. Can you reattach it?”

Atlanta Magazine has an interview with Otis Webb Brawley, M.D., and an excerpt from his new book "How We Do Harm: A Doctor Breaks Ranks About Being Sick in America."

The excerpt tells the story of 53-year-old Edna Riggs, of Atlanta, Georgia. Fear of cancer, medical debt, and losing her job caused her to not seek treatment for her breast cancer until it reached a very advanced state.

(Graphic content, may be upsetting; via @rogersmatthew)

Elderly perv falsely diagnosed cancer in women so he could sexually assault, use weird gadgets on them

In Wales, 77 year old Reginald Gill has been sent to prison for 8 years after falsely "diagnosing" cancer for women who sought health aid.

Gill, who is not a doctor, gave the women phony homeopathic treatment for their phonily-diagnosed cancer, including the use of these bogus healing machines and a form of electroshock therapy.

He told one woman she could be cured of cancer if a man sucked her breasts for half an hour each day.

Read the rest

On Cost and Cancer in America

Photo, by Miles O’Brien: my chemo drip from last week.

Using Storify (hey, for the first time!) I rounded up a Twitter conversation with followers about the financial devastation that can follow a cancer diagnosis in the US.

Read the rest

When life hands you cancer, make cancer-ade: via lemonade stand, 6yo boy raises $10K for dad's chemo

A story making the rounds this week: Drew Cox, a 6 year old boy in Texas, "decided to sell lemonade to help his father with medical bills." His dad, Randy Cox, has a rare form of metastatic cancer, diagnosed a few months ago. The family says Drew's lemonade stand earned more than $10,000. They have an online fundraising site here, where they're trying to raise more.

I am currently undergoing chemotherapy for breast cancer, diagnosed about four months ago. When I saw various versions of this story popping up on news sites, several thoughts came to mind.

First, hooray for this child. I hope his dad gets the treatment he needs, that the treatment is successful, and that the family doesn't go into debt or have to forego treatment for lack of funds.

But second: this is a disgrace. I hate it when stories like this are flogged in media as "feel-good" stories. This story should make America feel ashamed, not feel good. Seriously? A working father gets cancer, and the family has to rely on charity, and a lemonade stand manned by their 6 year old son, to obtain life-sustaining medical treatment?

It's not the first such lemonade/chemo-money story to make the rounds in the media, wrapped up in feel-good. When life hands you cancer, the news narrative seems to be, just make cancer-ade!

Well, I have cancer. I have insurance. I still pay what is for me a huge out-of-pocket sum, even after my insurance, for each chemo infusion every two weeks. As a wise fellow cancer patient told me, if the disease doesn't kill you, the medical bills just might.

Read the rest

The child brothels of Bangladesh (and an odd link with cattle and chemotherapy)

Hashi, a 17-year-old sex worker, embraces "husband" (known as a "Babu") inside her small room at the Kandapara brothel in Tangail, a northeastern city of Bangladesh.

Many young and inexperienced prostitutes have "lovers" or "husbands" who normally live outside the brothel occasionally taking money and sex from them in exchange for security in this male dominated society. She earns about 800-1000 taka daily ($9.75 - $12.19) servicing around 15-20 customers every day. Hashi is one of hundreds of mostly teenage sex workers living in a painful life of exploitation in Kandapara slum's brothel who take Oradexon, a steroid used by farmers to fatten their cattle, in order to gain weight and appear "healthier" and more attractive to clients. Picture taken March 4, 2012.

Here's a longer Reuters story about the plight of young prostitutes in Bangladesh, and the phenomenon of using this drug to enhance sex appeal.

The news item is a few weeks old, but I stumbled on it today while researching the origin and side effects of a steroid my oncologist is giving me during chemotherapy. Surprise: It's the same drug. I never knew breast cancer patients had so much in common with cattle and Bangladeshi child sex workers.

(REUTERS/Andrew Biraj)

Are you ready for your 3D mammogram?

Via my friend and fellow cancer-warrior Francesco Fondi of Wired (Italy), news that Fujifilm in Japan is launching what it calls "Real 3D Mammography," a medical imaging system that enables technicians to view mammographic images in a kind of 3D. The idea is to see and interpret the detail of internal anatomical breast structures more clearly than is currently possible with a 2D image.

The new system costs about $181K, and is designed to work with "Amulet f," Fujifilm's digital X-ray equipment for breast cancer screening (sold separately). I hereby volunteer to be a test hamster for this thing some day, even though I realize the radiation payload is a little higher with this than with current mammography. But wow, I'd love to see this level of detail about what is going on inside my body right now, as I go through chemotherapy.

Takuya Otani, reporting in Nikkei Electronics & Digital Health Online:

Because the three-dimensional structures of breast tissues can be checked all at the same time, it is possible to determine if a tumor mass is in contact with a mammary gland as well as to measure the depth of microcalcification, Fujifilm said.

When a picture of a breast is taken with the Amulet f, it takes two images from different angles. Then, by displaying the two images on a special LCD monitor and using polarized glasses, it becomes possible to see a 3D image.

The special monitor is manufactured by combining two LCD monitors and a part called "half mirror." (...)When the Amulet f is used to take pictures, a patient is exposed to X-ray radiation twice. But, with Fujifilm's own methods of taking and processing images, the total amount of X-ray increases by only 30-50%, compared with a normal mammography, the company said.

Read more. At the Fujifilm website, an explainer with images including the one shown above.

Two images are displayed on the two high-definition monitors. By wearing the polarized 3D glasses, a 3D image can be viewed through the half mirror.

Archie Comics confronts breast cancer

Via ComicsAlliance blog, news that 'Life With Archie' features a character with breast cancer in this month's new issue.

"That character is Cheryl Blossom, the redheaded spoiler in Betty and Veronica's love triangle with Archie."

More in an Associated Press item here.

As an authority on the subject, I can tell you the artist definitely got the "chemo-fatigue" look down right.

(thanks, @penguinchris)

Startup developing machine to mimic "cancer-sniffing dogs"

Here's an interesting Bloomberg News item on Metabolomx, a 12-person venture based in Mountain View, CA that's designing a PC-sized device to detect cancer by smell. "The problem with cancer-detecting dogs is that, well, they're dogs. Hospitals haven't embraced the idea of a diagnostic tool that poops, barks and requires feeding." Enter the cancer-sniffing machines.

Graphic description of mastectomy sans anesthesia in 1855

From Letters of Note, this incredible letter written in 1855 by Lucy Thurston, a 60-year-old missionary in Hawaii who had breast cancer. She underwent a mastectomy (and lymph node removal) with no anesthesia, no blood transfusion.

She wrote the following letter to her daughter a month later and described the unimaginably harrowing experience. The procedure was a success. Lucy Thurston lived for another 21 years.

[WARNING: not for the squeamish]: Letters of Note: "Deep sickness seized me".

(thanks, @scanman)

Video: Kittens in Space, by Jonathan "Song A Day" Mann

[Video Link]. I'm recovering from yesterday's chemo infusion (my fifth!), and feeling kind of lousy. Jonathan Mann asked me this morning if he could write a song for me as his daily song project, and if so, if I had any theme requests. I was like, duh! Kittens, and space. And like a beautiful internet miracle, bam! Just hours later, he created the wonderful video above: "Kittens in Space."

More about Jonathan: YouTube channel, Facebook, Downloads, Twitter, mailing list, Soundcloud, blog, G+, app.

Lyrics follow.

Read the rest

Shit girls say to girls with breast cancer

[Video Link]

I have heard many of these lines, myself. Jenny Saldaña (Facebook | Web | Twitter) is a Dominican actor/writer/producer/speaker who is surviving breast cancer with a fierce sense of humor intact. In the video above, she re-enacts some of the many unfortunate things that presumably well-meaning women have said to her, during her experience with the disease. There's a cool interview with here here, from a few years back. Her new project is here. Jenny, you're awesome.

(via @gillyarcht, who is also a survivor, and also awesome)

Shit cancer patients say

"Wait 'til they hear about this on CaringBridge!"

I can relate to this video by 21-year-old Woody Roseland of Colorado. Here's his website with more background on his personal story, and his creative work as a podcaster, vlogger, public speaker, and his title of "Denver's best looking amputee."

If you or a loved one are going through chemotherapy right now (I am, it sucks)— you will find many familiar chords in this video. And by chord, I mean, among other things, the incessant beeping of that fucking drip machine that delivers the healing poison that makes you puke and kills tumors.

Woody, if you're reading: IV fist bump, man. Solidarity and strength, and best wishes to you. You're really awesome. Also, we currently have matching hairdos.

(via Jody Schoger)

The SCAR project: portraits of young breast cancer survivors

Photographer David Jay's SCAR Project is described as "a series of large-scale portraits of young breast cancer survivors," intended to raise awareness about early onset breast cancer while "paying tribute to the courage and spirit of so many brave young women."

Dedicated to the more than 10,000 women under the age of 40 who will be diagnosed this year alone, The SCAR Project is an exercise in awareness, hope, reflection and healing. The mission is three-fold: raise public consciousness of early-onset breast cancer, raise funds for breast cancer research/outreach programs and help young survivors see their scars, faces, figures and experiences through a new, honest and ultimately empowering lens.

Read the rest

"What breast cancer is, and is not"

[Video Link]

The Komen kerfuffle that inspired this video may soon pass from the headlines, but for people living with the disease, breast cancer—and the fight for dignity, survival, and a cure— is forever. I now count myself among them.

I watched this video many times this weekend, while recovering from the most recent round of chemotherapy. The video was created by Linda Burger, identified in various news accounts as a 56-year-old woman who lives in Las Vegas, NV.

"Linda in Las Vegas," you are my hero. Thank you.

Breast cancer awareness ads feature superheroes giving themselves breast exams

"Nobody's immune to breast cancer. When we talk about breast cancer, there's no women or superwomen. Everybody has to do the self-examination monthly. Fight with us against the enemy and, when in doubt, talk with your doctor."

A public health campaign for breast cancer awareness in the African country of Mozambique, created by ad firm DDB for Associação da Luta Contra o Cancer. Here are the ads: Wonder Woman, Storm, Hulk, Catwoman. From Ads of the World, and more at Copyranter.

There is some controversy in the medical world about the value of breast self-exams. Even if it's not the best way to detect cancer (mammography or thermography can "see" more than your hand, and many if not most lumps that can be felt are benign), I think more awareness and more data is generally a good thing. Even for superheroes.

As an aside, the ads are fun but I'm gonna guess that the creative team on this one was all-male, and possibly the same team that did this previous VERY NSFW campaign for the same organization in Mozambique. Ever notice how public health ads about testicular cancer and prostate cancer don't tend to feature fondle-y sexualized close-ups of those parts?

(thanks, Zapski)

The diagnosis

I have breast cancer. A week ago, I had breast cancer, and the week before that, and the week before that.

Read the rest

Breast cancer prevention and evidence

The National Breast Cancer Coalition has come out with new evidence-based position statements regarding several popular preventative and treatment options for breast cancer. Among the findings: There is no link between abortion and breast cancer; there's no evidence that breast self-exams actually do anything useful; and the policy of routine mammograms for every woman doesn't help as much as we think it does.