Angie’s Choice

I know, I know, we don’t need yet another blog post about Angelina Jolie’s decision to undergo a prophylactic bilateral mastectomy. She doesn’t need any more attention.

But that’s exactly what drew me to write this–she doesn’t need any more attention. She didn’t have to write that graceful and lovely piece for the New York Times. She could have gone on being one of the world’s most famous women without sharing her secret. But she chose to tell us about her medical choice, in the hope it would help other women.

As usual, people who know absolutely nothing about what it’s like to lose a loved one too young to cancer, who know absolutely nothing about being told you have a genetic time bomb ready to go off–87 percent chance, anyone?–decided to judge her choice.

I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words “You have cancer,” or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.

I said it in my 10 Commandments of Breast Cancer and I’ll say it again: Thou shalt not judge someone else’s treatment or reconstruction choices.

My own choice: I had no family history when I was diagnosed five years ago so I opted not to get genetic testing. I also opted for a single mastectomy for DCIS. I know of many young women who opted for the bilateral in that situation. They did what was right for their specific situation and risk tolerance; I did what was right for mine.

One thing I wish I’d seen covered more: Ms. Jolie mentioned how expensive the BRCA test is, more than $3,000; so did a couple of TV stories I caught, but didn’t mention why.

The reason it’s so expensive is because Myriad Genetics owns the patent to the gene, effectively preventing researchers from coming up with other, possibly less expensive alternatives. The case is before the U.S. Supreme Court right now, and I’ve read that the Supreme Court is skeptical of Myriad’s argument. I hope their skepticism translates to a ruling against Myriad.

525,600 Minutes

Napa toastThis picture is from October, 2011, when my husband Bruce, his brother Jeff, and our friend Pam went to Napa. Pam’s hand is in the lower right in the picture. You can see how swollen it is in spite of the lymphedema sleeve peeking out from the bottom of the frame.

It was Pam’s idea to take the picture of our hands raised in one of our many toasts. She knew we were making memories to last the rest of our lives, in her case, six months. She gave framed copies to all of us for Christmas.

It’s been a year since she left us, a year filled with memories and disbelief that she’s actually gone. We started letting go of some things and hung to others as long as we could. Bruce still has a picture of Pam as his cell phone wallpaper. I swapped mine out a few months ago, but like him, saved her texts. When we went on our second pilgrimage to sleep with the sandhill cranes in March, we planned to laugh over the text messages she sent on our previous trip. We were both shocked to see her text messages had disappeared. It felt like she was being erased.

The song “Seasons of Love” from Rent asks how you measure a year, or 525,600 minutes. “In daylights, in sunsets, in midnights’–then asks “How about love?” and urges us to “Celebrate” and “Remember a year in the life of friends, Remember the love!”

525,600 minutes later it still hurts like hell, but we remember the love.

My other posts about Pam:

How to Get Comfortable on Tweetchats

BCSMI’m writing this post in response to a plea for Twitter mentors from Jody Schoger, one of the moderators of the Breast Cancer Social Media (#bcsm) tweetchat. It takes place every Monday night at 9 p.m. Eastern time and has rapidly become one of the most popular tweetchats out there. Jody said there are quite a few lurkers out there who need some help getting started.

The first thing you should know is it’s common to feel intimidated by tweetchats and Twitter in general when you’re first getting started. I remember how scared I was the first time I attempted to join a conversation on Twitter. It’s like walking into a giant cocktail party where you don’t know anyone. I also remember how thrilled I was the first time someone I didn’t know started following me on Twitter. He’s a doctor who since deleted his account (at least that one–he could still be out there somewhere), but I will always remember how he made me feel welcome and would explain things like what YW means (you’re welcome). I gradually become comfortable out there and you will too.

The other thing you should know is that #bcsm is one of the fastest-paced chats out there. So if you’re thinking, Wow, I can’t keep up!, it’s not just you. I followed along with another popular healthcare tweetchat one night and it was positively sedate by comparison. #bcsm is definitely like drinking from a fire hose.

There are a couple of things you can do to keep up. One way is to use tweetchat. You can sign in with your Twitter account and it will scroll all the #bcsm tweets. You can set the refresh speed and you don’t have to enter the #bcsm hashtag with your tweet. Another way is to use tweetdeck and create a #bcsm column where only those tweets will show up. I typically use both because sometimes one or the other will cough up a hairball.

That’s the technology side if it, but how do you get over feeling shy? Start slow. Introduce yourself at the beginning of the chat. Mention why you’re here. If you’re feeling shy because it’s your first time on the forum, feel free to say that. If someone makes a comment you love, say so. !f you have a question, ask. If someone says something that reminds you of your own experience, share it. If you don’t agree, that’s okay too, just remember to be respectful. It’s a conversation just like the conversations you have offline (aside from the fire hose aspects).bcsm-team_0

Finally, remember, you are talking to people, like #bcsm’s moderators and hosts: From left, Dr. Deanna Attai (@DrAttai), a breast surgeon who helps #bcsm and the public at large make sense of technical medical issues and is a member of the American Society of Breast Surgeons. In the middle is three-time cancer survivor and moderator Alicia Staley (@stales), and on the right is writer/survivor/moderator Jody Schoger (@jodyms). They are three of the most welcoming people you could ever hope to chat with.

The topic varies every week and ranges from dealing with mets to what cancer does to relationships, to the “open mike night” scheduled for this coming Monday, March 18th. Please feel free to join in.

The Gift

angel devil bra not flippedIt showed up on Tuesday. When I got home from work a very large box was on the kitchen deck. I figured it had come to the wrong address but it had my name on it; then I saw it was from Pam’s husband and slowly started connecting the dots.

It was the angel-devil bra that Pam modeled in May 2011 at the ArtBra KC event. The people who won it at auction gave it to her, and she displayed it on a dress form in her bedroom. It showed up practically a year to the day after the last time we saw her.

After shedding a few tears and raising a glass of Pam’s favorite Pinot Noir in her honor, we gave the bra and dress form a place of honor in our closet. I sent Eddie a thank you email and he said he knew Pam would want me to have it. He also said that I would truly value, appreciate and enjoy it.

He was right.

Pam artbra cover

Sorry Business

       “The truth comes out of this hairbrush.” – Dula Nurruwuthun

If I could, I’d create a pole so high
it would pierce the sky, and still
would not be as tall
as you walked in this life.
I would summon truth
from my brush made of hair
to tell of your life’s essence;
the white of your pure intellect,
the green of your calming garden,
the red of your fierce heart.
It would whisper
the rose-gold of a Perth sunrise,
sigh the blue of deep absence
and my tribute would shimmer like tears
to keep your spirit company
until the weary wood lies down,
the colors fade like daylight
to velvet night,
and I am left with
this sorriest of business.

-for Rachel Cheetham Moro, 1971-2012

On the islands north of Australia, the mourning period is known as sorry business. Some funerals include carved personal totems with designs applied by brushes made of human hair.
~ from an exhibit at the Seattle Art Museum

© 2012 Jackie Fox

Published in Issue 11 of Touch: The Journal of Healing

A Meeting of the Minds

The above tweets are from the “Healthcare; Education; Research: Evolution or Revolution?” translational health sciences colloquium held at the Lodge at Torrey Pines on Thursday. It was my great honor to live-tweet the conference on behalf of my employer, HDR Architecture, which cohosted the event along with Eric Topol, MD, director of the Scripps Translational Science Institute and author of The Creative Destruction of Medicine; Michael Johns, MD, chancellor and EVP for health affairs, emeritus, Emory University and co-author of Predictive Health, and Bill Brody, MD, PhD, president, the Salk Institute for Biological Studies.

In addition to Drs. Topol, Johns, and Brody, the line-up was a Who’s Who of thought leadership in medicine. Dr. Nancy Snyderman, NBC’s chief medical editor, spoke on media’s responsibility to translate complex medical information without talking down to the audience, using her recent Rock Center interview with Dr. Topol as an example.

Denis Cortese, MD, president/CEO emeritus of the Mayo Clinic and director of Arizona State University’s Healthcare Delivery and Policy Program, shed light on the problems we face trying to move our healthcare system to a more preventive model. He said Medicare “pays to keep us sick;” among other ways, by not reimbursing  care provided by nurse practitioners. Another problem is the lack of interoperability among electronic medical records systems, a requirement doctors recommended while meaningful use requirements were being created, but was removed.

That’s when I started wishing our colloquium had been made mandatory attendance for members of Congress. I wished it again when a spirited discussion took place on randomized clinical trials. They take too long to develop,17 years on average; they cost too much to develop, $80,000 per person; but as one attendee pointed out, it’s the best we have right now. The debate was both respectful and ferociously intelligent, where so much of what passes for debate in our political arena is just ferocious.

Dr. Topol likened the digital medical revolution to Gutenberg’s printing press in the way each of them democratizes knowledge. He told us about a $99 device he uses to monitor his sleep patterns, compared to a $3,000 lab test. He jokingly added that all the price points seem to be $99, and Anne Wojcicki, founder of genetic testing company 23andMe got a laugh later when she said they had just reduced their DNA analysis product to that exact price point.

Dr. Topol also showed us his genome, which he keeps on his iPad using an app called My Genome. At that point I felt like I had wandered into a Ray Bradbury novel. I will own up to some fear about what this brave new world of technology will do to the doctor-patient relationship, but Dr. Topol makes it seem like common sense. As he pointed out, we have sensors on our cars but not our bodies, and which one is more important? I took more hope later when Dr. Snyderman said the technology-based change in doctors’ roles may “free us to focus on our role as healers.”

Process was a large part of the discussion. Dr. Garry Neil, representing the cross-industry pharma group TransCeleration, talked about how in the current clinical trial system, four pharma companies will send someone to the same investigational site. The industry, which spends $34 billion a year on clinical trials compared to $1.8 billion for the National Institutes of Health, is working on ways to collaborate and streamline the clinical trial process.

Elias Zerhouni, MD, former director of the National Institutes of Health and president of global R&D for Sanofi, said we are putting young doctors and researchers under so much pressure to provide service they don’t have time to ask the right questions. He said “Nature is trying to tell us something” when cancer’s pathways include 270 brakes and 30 accelerators (oncogenes). Yet we are focused on what speeds it up, not what stops it.

In case you are wondering where patients were in all this discussion, wonder no more. Dr. Cortese said the only stakeholder in all of this is the patient; yet the patient is the one missing from the stakeholder meetings and conferences. Putting the patient at the center was a common thread. Every time someone talked about how patients must be at the core of future models, I kept wishing my #bcsm buddies and other patient advocates could be there. Every one of these doctors did their profession proud.

Speaking of which, I was very proud to be my employer’s social media reporter for this event. HDR Architecture is to healthcare and science/technology design what these doctors are to medicine and healthcare policy. Technically, I don’t even work for the architecture company; I work for the parent corporation HDR, Inc. But as a breast cancer survivor and past, current and future patient, I have always taken immense pride in the work of our architecture teams. One of the presenters was Dr. Joanne Smith, head of the Rehabilitation Institute of Chicago. Teamed with Gensler, we are designing a facility that not only will put RIC researchers in close contact with clinicians, it will put them in close contact with patients. This is nothing short of a revolution.

I could go on, but this post is already twice as long as what I typically write. We used the hashtag #ResearchtoLife if you want to look up more of our tweets, including quotes from the rest of our stellar line-up not mentioned here. We’re also planning a Storify summary but in the meantime, you might want to check out the story by TenderDaily.

Acting Locally

wear yellow banner not flipped

On Wednesday I had the pleasure of being the guest speaker at the Wear Yellow Nebraska 2013 kickoff reception. Wear Yellow Nebraska is a grassroots organization started by people who love riding bicycles and advocating for cancer. Their Wear Yellow Ride has become one of Nebraska’s premier cycling events, attracting 480 riders last year. This year’s event on May 18th will be the 10th annual ride, and they have added other fundraising events.

Wear Yellow Nebraska was originally the Nebraska chapter of LiveStrong, but became an independent non-profit several years ago so all the funds they raise can stay in Nebraska. On Wednesday night they gave more than $12,000 in grants to four very worthy local groups, including A Time to Heal.

A Time to Heal is a 12-week cancer rehabilitation program designed to help people regain their physical, emotional and spiritual health after a cancer diagnosis. It was started by psychologist Stephanie Koraleski and cardiac rehab nurse Kay Ryan. When Kay finished her breast cancer treatment, she said, “Where’s my cancer rehab?” and found out there wasn’t any. Since its debut in Omaha, a Time to Heal has grown to 12 Nebraska locations and has spread to Iowa, Nevada, Ohio, South Dakota and Wisconsin. It has also added a second track for all cancer survivors and caregivers.

A Time to Heal recently offered its first workshop on chemobrain, and I will interview Stephanie Koraleski about it in a future blog post. But the point I want to make right now is about the wonderful work that grassroots organizations like these are doing. A Time to Heal and Wear Yellow Nebraska are just two Nebraska examples. And there are equally wonderful groups in New Jersey and Wisconsin and Texas. If you’ve become jaded about some of the national organizations, don’t forget about the people doing good work in your own back yard. They deserve our support.

#HCSM Review December 5th Edition

I didn’t specify a topic the HCSM blog carnival this week because I wanted to see what kinds of posts I’d get. I got a huge variety, everything from patient advocacy to mobile apps.

One of the things that fascinates me most about social media is how patients are using it to find and support each other. One of the best is Marie O’Connor, who has been blogging at Journeying Beyond Breast Cancer for four years. Her post this week is on the power of patient blogs.

Twitter has become another huge channel for healthcare advocates, and one of the best known tweetchats is #bcsm (breast cancer social media). One of its moderators, Jody Schoger, wrote #BSCM, Cancer Advocacy and Education in the Virtual World for the Breast Cancer Consortium. Jody also blogs at the excellent Women with Cancer and if you don’t follow @jodyms on Twitter, you should start. Right now.

David Harlow at HealthBlawg submitted Engage With Grace, which asks us to have that all-important conversation with loved ones about how we want to die. This was the fifth year of the Engage with Grace Thanksgiving blog rally.

Disabilities advocate Patricia Anderson submitted #HCSM and Disabilities: Some Case Studies, which discusses how social media venues such as Second Life are removing barriers.

Patient advocates are also using their power to put doctors on notice. No, You Kiss My . . . , from afternoon nap society, calls out a Dr. Greenbaum for belittling a patient in an article he wrote for a rheumatology journal.

Healthcare IT researcher Tim Cook also touches on this theme with Change, really!? arguing that doctors are not losing power simply because patients are gaining it.

And doctors are embracing social media. Want to get a roomful of cardiologists’ jaws to drop? Start talking about using social media to improve outcomes, like cardiac electrophysiologist Kevin Campbell did at a recent conference.Tuberculosis is a huge public health issue in India, and Dr. Ruchi Dass explains how ecompliance is being used to control it.

Data was well represented, with Andy Oram reporting on big data from the Strata RX conference and Jason Kohn posting about the mobile healthcare revolution in the developing world.

John Goodman reported on a radical notion: cost transparency and shopping for medical care, thanks to a health-care “blue book” and MediBid, which operates on the Priceline concept. I remember when I had my post-mastectomy breast reconstruction four years ago, even my plastic surgeon had no idea what the Alloderm he used to augment my tissue cost.

Thanks to everyone who submitted blog posts this week, including Joan Justice, who curates the HealthWorks Collective site where several of these posts appeared.

Calling All Health-care Social Media Bloggers

I’m going to host HCSM Review on Wednesday, December 5 so if you have a great post about social media and health care please submit it to  fromzero*at*cox.net by 6 p.m. Eastern time Monday December 3. I am not requesting any specific theme; just send me a favorite post on social media and health care, or write a new one. HCSM Review does ask that to be considered for inclusion, posts should have been written within the last couple of weeks.

HCSM Review is a blog carnival, which means it’s a summary and round-up of blogs including links to the blog posts. Marie Ennis O’Connor (@JBBC) does something very similar with her Friday round-up of blogs that have inspired her over the previous week. If you’re not familiar with Marie’s very fine blog Journeying Beyond Breast Cancer, I urge you to check it out.

I’ve never hosted HCSM Review but I hosted a different medical blog carnival, Grand Rounds, a couple of times. It was a great blog carnival that went on for quite a few years but has been discontinued. If you’re a blogger considering hosting a blog carnival, it takes some work but it’s also a lot of fun.

If you’ve never submitted a post to a blog carnival, now is the perfect time. I look forward to reading and sharing your work.

Breast Cancer: It’s Not Just About You

Dusting off this post in honor of Monday night’s #BCSM tweetchat with Marc Silver (@bc_husband) about what breast cancer does to families. And I just realized my blog turned three years old on Thursday. -Jackie

Deciding what to do when you’re diagnosed with breast cancer is one of the loneliest decisions you’ll ever make. Your doctors will give you  their best counsel, but it’s ultimately up to you.

Although you’re the star of this horror show, if you have a family, breast cancer affects all of you. Both my husband Bruce and I felt hounded by pink ribbons in the early days of my diagnosis. We decided to escape by watching the John Adams miniseries on HBO and wouldn’t you know it, his daughter had breast cancer. It was fine until they got to the 18th century mastectomy minus anesthetic. Bruce yelled at me to leave the room. When I came back, I said, How was it?” and he said, “I don’t know, my eyes were closed.”  

Bruce was more scared for me than I was for myself, although he didn’t share his fears with me until I became calmer and stronger. At one point he asked me if I would consider the double mastectomy as prevention, and asked me to think about it. I waited for about 30 seconds and said, “I’ve thought about it. No.” He told me he didn’t want me to die and I told him I wasn’t going to die and preferred dealing with one breast at a time. But first and foremost, he told me he would stand by my decision, and he’s been true to his word. I couldn’t have asked for a better partner to accompany me on the cancer roller coaster. 

Bruce was amazing in too many ways to recount here, but I’d like to share what a great source of humor he was throughout this adventure. (Yes, cancer does lend itself to humorous moments and I would urge you to take advantage of them when you can. Sometimes that’s the only power you have over a situation that sucks.)

When we were waiting for our first consultation with the doctor who would become my oncologist, I said, “Well, at least nothing can surprise me now.” (We had been assuming for two months that I would undergo radiation and had just had a different oncologist recommend a mastectomy.) Bruce leaned over, lowered his voice and said, “I’m sorry–we’re going to have to cut off your head.”

One of my favorite stories about family decision making was in the October 2009 Omaha World-Herald Healthwise supplement. (I can’t link to it for you because it’s not archived online.) The woman’s family voted on a white board posted in the kitchen with headings “Save the Boob” and “Lose the Boob.” (In case you’re curious, they voted to lose the boob.) That’s a family I wouldn’t mind being a part of.

Your turn–how did your family members handle it? How did they prop you up or make you laugh?