Believe it or not, I was a social media dabbler before I started this blog three years ago.
I even live tweeted my mammogram.
The difference? I had about 30 followers at the time. There were no replies, no retweets to my story.
I was tweeting into the void.
Once I started my blog, I took my social media dabbling to a whole other level. I was just a gal with stage 3 cancer, a 10% chance of living 5 years, and nothing much to lose. So I opened a second twitter account under the name “@chemo_babe” to keep my identity hidden.
I got some traction in the twitter world on the eve of my second or third chemo. I was besides myself with anxiety, having suffered terrible side effects from the first dose alone. I found the hashtag #blamecancer, started by Drew Olanoff. Drew was moved by my tweets, started retweeting me, rallying others to support me. It was a phenomenal experience in the midst of a lot of suffering, this sudden embrace by total strangers who showed compassion for my plight.
To be sure, my blog has been a lifeline. Paradoxically, the anonymity I started out with helped it to be so. Hiding behind this persona, I could be as brutally honest as I needed to be. I spoke truths that resonated with others and helped me connect with other patients, caregivers, and doctors. It has been an education that I truly value.
Over time, I found the amazing #bcsm community. With the coaxing of supportive friends, I gradually “came out,” using my first name and eventually my second. I started getting media attention, locally, nationally, and even internationally. Soon everyone who could google knew that ChemoBabe was Lani Horn, just as anybody reading Marvel Comics knew that Superman was Clark Kent or Spider Man was Peter Parker.
When I finished my last procedure this past May, my old twitter pal Drew sent his congratulations and tweeted, “Are you going to change your twitter handle now?”
Then answer at that time was no. I have built a community through this identity. I have thousands of twitter followers and Facebook fans, tens of thousands of blog hits. Cancer was still a central part of my everyday life, as I battled fatigue and other side effects, working to pick up the pieces of my life.
That was May. Now it’s December, and I woke up last week feeling like the answer to Drew’s question had changed. Yes, I tweet a lot about cancer. But I also connect with knitters, parents, and writers. I livetweet awesome, tragic, and inane cultural events along with my twitter pals. “Chemobabe” seemed too narrow and burdened by the past to be my twitter identity.
So I went back to my old, hardly used twitter account and hijacked that name. I am now @Lanisia, a nickname my uncle still uses for me. It’s a name I made up when I was 3 and I announced to my stepfather that I was actually a lost princess.
“What’s your name, Princess?” he played along
“I am Princess Lanisia,” I said with as much royalty as I could muster.
My old pretend name thus supplants my newer pretend name. Lanisia takes over for ChemoBabe from here on out. All of this superheros, princesses, and make-believe seems fitting for the ephemeral, electronic world of blogs, tweets, and status updates, where bonds are made, experiences shared, and heartfelt truths are told.
Tags: coping, daily life, gratitude, identity loss, social media
Posted in Media, Survivorship | 11 Comments »
I’ve garnered a bit of attention for my recent post on Komen. Here are two media pieces that have come out in response:
• USA Today
• KIRO FM news radio
It’s a David and Goliath thing, us wee bloggers versus one of the most popular charities in the United States.
I started this blog, not to complain, not to agitate, but to educate and communicate about the social and emotional experiences of having cancer.
And the reality is, Komen is a big part of the cancer landscape. Because of that, they are an unavoidable backdrop of the social and emotional –– and dare I say medical –– realities we face.
It’s not surprising, then, that the last Komen post garnered a my personal record number of comments and hits. As always, I learned so much from the comments and emails I received. I know it takes time to wade through 100+ comments, so I am going to summarize the main points here for you. I hope I haven’t left any out.
Komen dominates the cancer charity scene, to the detriment of other cancer charities –– and other cancer patients.
• The lawsuits against other organizations who deign to use the phrase For The Cure™ are totally uncalled for.
• The lawsuits are just the tip of an uncollaborative iceberg. Komen has not partnered with other cancer organizations, even when these groups are working to fund research on cancers related to breast cancer, such as ovarian or prostate cancer.
• As one reader put it, Komen has become the “face of cancer,” so much so that people seem to think breast cancer is the only type of cancer. Women with thyroid cancer and papillary carcinoma report being showered with pink ribboned items from well meaning friends. People with cancer in more embarrassing body parts are stigmatized. And apparently Komen is a very touchy subject for childhood cancer advocates.
Komen is working from a limited (and outdated) scientific framework.
• Komen has not updated its message, despite new knowledge about the biology of breast cancer. They continue to put their focus on mammography, an important but imperfect tool in detection. Detection, of course, is but one piece of the cancer puzzle. Missing from this formulation are prevention and cure.
• Related to ignoring prevention, Komen, with its corporate partners, fails to scrutinize data about increasing cancer rates and the falling average age of diagnosis. These point to an increase in environmental toxins, such as those that go unregulated in Komen’s new perfume, which may contribute to the overall increase in cancer rates, as well as issues with food additives and obesity.
Komen has created a story of cancer treatment and survivorship that is not inclusive.
• Komen’s emphasis on “beautiful” patients and survivors leaves a lot of women out. One woman says that the “perky pink” survivor stories do not reflect her experience. There is no room for depression, divorce, abandonment, anger — many of the negative but real things that come as a part of the cancer package.
• Pink packaged educational messages actually work against the purported goal of “raising awareness.”
• Women with metastatic disease have no place in the Komen version of breast cancer. This is consequential – not only for their experience, but for funding priorities.
The organization has lost its way.
• Nancy Brinker’s salary and her apparent love of celebrity leave more than one reader suspicious about her true intentions: cure or profit? To put a finer point on it, what does it mean to pursue a cause wherein true success would put you out of a six-figure salaried job?
• I do not want to spread rumors, but these tales came out with such frequency, I would be remiss to omit them entirely. There are a number of troubling stories, both told in blog comments and in private emails, about survivors being excluded from the organization for not raising enough money, as well as of local affiliates feeling disillusioned with headquarters. Moneymaking seems to have become the priority mission. I’ll leave it at that.
Consumers need to be smarter about where their dollars go.
• The “armchair activism” of buying in place of doing good is a set up for all kinds of exploitation. A recently uncovered scam of a fake charity selling pink ribboned jewelery is only one example of how this can go wrong.
• Unfortunately, tools like Charity Navigator just reflect the financial soundness of an organization. Readers named other cancer organizations that they suspect of playing these numbers as well.
• If you want to support research, make a direct donation to a research institution.
I am glad to know that folks are paying attention and asking questions. Unlike the brave shepherd David, I am not trying to bring down this Goliath. Maybe I’m naïve, but I believe that Komen has the potential to do the right thing, if they can address some of these issues in a real and meaningful way.
To be perfectly clear: we need dollars going to cancer research, support for low-income patients, and funding for survivorship programs.
All we ask is for this to be done with transparency, collaboration, and integrity.
Tags: advocacy, essay, komen, social media, straight talk
Posted in Media, Survivorship | 21 Comments »
The Empowerment Rally this past weekend at CTCA really inspired and humbled me. I got to speak on a panel with four other remarkable people and reflect on what it means to be a self-advocating patient and what medical care that considers the whole patient might look like.
(If you didn’t get to see it and have an hour, I thought it was worth watching.)
I know I participated, but honestly, I felt like a humbled spectator. Maybe it’s because I am not totally done with my treatment, but I felt like Dorothy in The Wizard of Oz, getting to meet magical people who will help me navigate a mystifying place and find my way back home. I started out in the alternative universe of CancerLand. Now I am in SurvivorWorld.
Can you see the resemblances? No, not really.
Looking across the panel and listening to their hard-earned wisdom, I saw a number of qualities my fellow panelists had in common. First, they shared a commitment to make meaning of their suffering by doing something –– reaching out, speaking up, creating alliances, constantly learning and sharing. All of us were there because of our use of social media in dealing with cancer and survivorship. Mel Majoros has an award-winning blog and a radio show that focuses on cancer. Jody Schoger blogs, bikes, and advocates for women with cancer, working with M.D. Anderson and LiveStrong. Matthew Zachary started an organization called I’m Too Young for This that organizes and champions the underserved young adult cancer community. Joe Bacal, a professional racer, reaches out to patients and their families, giving them hope for a rich life after cancer.
While nobody sugarcoated their suffering or stifled their outrage about cancer as a disease and some of the indignities of treatment, they all manage to stay positive about life, whether through humor, doing what they love in the world, being with the people they care for most. There was a spirit of adventure and determination they shared.
Survivorship is a relatively new phenomenon. In the 1930s, fewer than 1 in 5 people survived a cancer diagnosis. In the 1940s, those numbers improved to 1 in 4. As recently as the 1960s, survivorship rates were only 1 and 3. Today it is about 1 in 2.
We don’t have a lot of role models. We can’t all be Lance Armstrong. Besides, every survivor has different issues that they face. As I said during the round table, we are more biologically similar than psychologically and socially similar. Treatment, if we are fortunate, has a timetable and an end. There are known pitfalls and ways of coping. Survivorship is much more varied and uncertain.
Undoubtedly, it is a blessing to have the chance to walk in SurvivorWorld. But along with the beautiful emerald castles and small people bearing lollipops, there are dark forests watched over by wicked witches and flying monkeys.
It really helps to have some good pals at your side. And for having a chance to meet a few, I am grateful.
Tags: attitude, changes, coping, courage, daily life, education, gratitude, hope, identity loss, social media
Posted in Media, Treatment | 2 Comments »
Please join us online tomorrow (July 23) at 2:30 Central Time, as the CTCA introduces its model of patient-centered care. I will be on a panel, along with fellow survivors Joe Bacal, Mel Majoros, Jody, Schroger, and Matthew Zachary, to see and discuss the potential for this new treatment system. To participate, link to http://www.livestream.com/cancercenter
Posted in Media | 2 Comments »
Me on TV! Woo-hoo!
Click here to see the YouTube!
I won’t belabor all the things that I wish I had done differently, but I will tell you that I misunderstood the term “make-up ready.” I thought that meant I was supposed to arrive at the studio ready for make-up. Instead, it meant I was supposed to arrive with make-up on.
Luckily, there was a very nice weather lady who let me use her make-up. It wasn’t a 100% match, but close enough. And way better than my post-chemo emerging lash look.
Posted in Media | No Comments »