Doing what we can...

 

Two pleas today, and both cancer-related. Yeah, the C word, the thing that makes us enraged because we're helpless and don't know how to fight it.

Well, here's two meaningful ways to help.

Anyone who's read my blog over the years knows about Jennifer L. Kranz, the sweet, cute six year old who died of DIPG a mere 3.5 months after diagnosis. Her parents created the groundswell Fluttering movement, in which people purchase a Fluttering kit of lawn-ornament dragonflies and commit to moving the dragonflies yard to yard throughout September, with official Unravel paperwork that requests a donation to the nonprofit foundation in return for selecting where the dragonflies go next. Today there is a flash sale of the Fluttering kits. Fluttering is a good thing to do with your own kids--talk to them about how to use our bodies to help others, that the daily task of moving the dragonflies is raising money to help researchers figure out kids' cancer. You can Flutter in the name of someone you know who is fighting now or in memory of someone. It's a meaningful, intense, beautiful thing to do. Purchase your Fluttering kit here.

And here's a silly video from Jennifer's mom explaining the "flash" part of the sale.


The other way to help: my friend Nanea Hoffman is the founder of the popular and wildly-clever blog Sweatpants & Coffee. She was recently diagnosed with breast cancer. She has created the "Anxiety Blob" to squeeze at moments when the world seems too much. These blobs are for sale now here. Also, subscribe to the blog and follow her caffeinated story!

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Ashes to Ashes, Funk to Funky

from radio.com

My husband told me this morning at the breakfast table.

"Something happened today that's going to upset you."

"Something in world news?"

"Yes. And it will affect you personally. Should I tell you?"

"I don't know." I was thinking about getting the kids off to school and I didn't want to sink into a whirlpool of grief until they were dressed and out the door.

"It's going to ruin your day," he said. "But you'll hear about it other ways."

"Okay," I said. "Tell me."

"David Bowie died."

I let loose with an expletive and immediately hid my face. Crash, crash. No. Not him.

He had cancer for 18 months, my husband told me, and somehow the world didn't know as he put together Lazarus. Interesting name, that. I went to Facebook briefly and saw that I had posted a lot about Bowie recently (was someone releasing a lot to bolster his sense of his impact on the world before he left...I had interpreted it as just publicity around Blackstar), and with one revolving gif that showed all his different identities, I had titled it "Always and forever." As I knew somehow.

I'm forever grateful to Amy Carpenter for introducing me to David Bowie with a mixed tape back in the '80s. He was then popular for Let's Dance, but she gave me the wierder 1970s stuff that opened strange doors that I'd never close again. I loved David Bowie's music, his mutability, his creativity, his vocal idiosyncrasies. His work was filled with emotion and I responded to that.


I'm also forever grateful to my college boyfriend who orchestrated our going to a Bowie concert in Stuttgart, Germany. We were there visiting his brother in Ansbach (we were both on junior year abroad), and we heard on the radio that Bowie was playing in Stuttgart, not too far away. We had Interrail passes which gave us unlimited travel on the railway systems of Europe since we were considered temporary European residents for attending college for a year there, so we said goodbye to his brother and sister-in-law and hopped a train for Stuttgart. We headed for the concert hall there, bought scalped tickets outside, and proceeded in.

It was an amazing show. It was BEYOND AMAZING. It was the Sound + Vision tour, and I'm forever grateful that if I only got to see Bowie perform live one time, it was when he was playing the songs of the '70s that I loved. Sound + Vision was almost like a "greatest hits" tour. And I personally love the song Sound and Vision and what it says about the creative process. He was one of the first to play with video footage and there was a giant three-story David Bowie that accompanied the real man on the stage, interacting with him in clever and sometimes mindblowing ways, bending down to talk with him and the like. It was extraordinary and so freaking cool.

We spend so much on the scalped tickets that we didn't have enough money for a place to stay afterwards (and I think we didn't return to Ansbach because it would be so late at night and we didn't want to wake them--they had a small daughter too. Man, that girl is probably in her early thirties now...whoa...). So, instead we rode the trains for the rest of the night, picking a destination at the end of the line, trying to sleep as best we could, then deboarding and randomly picking the next train going the furthest away, all with that tired exhilaration that comes from watching a great concert, strains of music still in your ears.

We were doing just what he said, "driving like demons from station to station."

I'm sad to have to say goodbye to a musical hero that has filled (and will continue to fill) my life with so much pleasure and ...well, feelings. You can't just have his music on as a background; it's impossible not to dance to it or sing along and wish that you could tell him personally how much his words and music meant to you. I now have to erase one fantasy off my list, the backyard BBQ where we sing Under Pressure together. I guess that means I need to get moving on my other fantasies.

Ain't there one damn song that can make me break down and cry?
Yes, David: all of yours.

My sympathies to his wife and family.


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Big Day of Giving

Today is the Big Day of Giving, where we focus on charities and make donations. I'm going to donate to 916 Ink, a group that helps Sacramento-area teens become published writers. But there's another nonprofit I donate to each month on the 12th, in memory of Jennifer L. Kranz, a six-year-old who died on the 12th (of February 2014). Would you be willing to donate $12 each month on the 12th to fund pediatric cancer research? Visit the GiveUs12 link.

I have two things to share in this post. One is an op-ed I wrote after having an epiphany about cancer: that it's not forever, not incurable, not the monster that will forever rule our fears. A cure is coming, so long as we can fund innovation.

Speaking of innovation, I'm delighted to share a video by the Kranz family, explaining about their nonprofit Unravel, founded in memory of their daughter to keep other families from going through that incredible tragedy. Let's watch that first.





There is progress coming; there is. Here is my piece that originally ran at the wonderful, big-hearted blog Sweatpants & Coffee.

Handing Cancer its Termination Notice

by Erika Mailman

Cancer's never going away, is it? It's the Grim Reaper large as Godzilla, with not one but two scythes, and really sharp incisors inside that skeletal jaw.

For many years—since I watched a friend in her early forties twist and moan in the pain of cervical cancer until it won—I’d considered cancer the beast that was omnipotent, and all we could do was bow our heads and hope it passed by those we cared about.

But recently I’ve been buoyed up by optimism. I foresee an end to cancer. I’m taking a lesson from history and am officially and ironically handing cancer its termination notice.

What spurs this confidence? Let me backtrack.

I teach English at a community college in Sacramento. In a chapter of our textbook titled "Homonyms and Commonly Confused Words," I learned the difference between sympathy and empathy. Basically, as my students and I understood it, sympathy involves a mild feeling of distress, while empathy entails actually crying.

I spent a lot of time being empathetic in 2014. I capped off each night by looking at the blog written by Libby Kranz about her daughter's breathtakingly-quick—less than four months—decline and death from a tumor in her brainstem. Jennifer Kranz was six; the one-year anniversary of her death is next week, Feb. 12.

She and my daughter were in the same playgroup of a mom's group in Gilroy, California, and thus the news hit home in a way nothing else ever has. I sank to my knees night after night, not just crying, but sobbing, hyperventilating, in rockgut despair for my friend's loss.

Each morning I showered away the ravages of the previous evening’s grief, and met my students with a smile. Along with the grammar text, I assigned them a novel, Year of Wonders by Pulitzer Prize-winning author Geraldine Brooks. This book is about the Bubonic Plague and is set in medieval Eyam, England, a village remarkable for the fact its residents quarantined themselves to avoid spreading the plague. They were sympathetic (if not empathetic) to the imagined plight of neighboring villages should they bring the "plague seeds" with them as they fled.

The Black Death, as the Bubonic Plague was called, swept over Europe, Asia and the Middle East, a pandemic that lasted for hundreds of years (mainly 1300s-1600s). Statistics vary, but it is said that a full third of the Middle East and Europe's population died from the plague.

Brooks's novel describes the buboes (dark, swollen lymph nodes from which "bubonic" derives) that would appear in people's groins, armpits, necks: the first sign of a fast ride to death that would involve high fever, vomiting of blood, and coagulating blood in fingers and toes, leaving them gothically, repugnantly blackened as if by fire. Deaths were so rampant that soon mass burials took place so corpses could be speedily dispatched; periodically, modern-day construction crews come across these pits.

Since the medieval world was awash in fleas (puce--French for "flea"--was a favorite clothing color at Versailles, to provide camouflage for the ubiquitous pest) and fleas carried the plague from rodent to human with their bites, the disease spread with alarming rapidity. Fleas famously can leap over a foot away and can continue living in bedding and clothing (in Brooks's novel, a tailor's shipment of cloth from London is to blame for the plague reaching Eyam), so short of completely contaminating a home, there would be no way to stop the miniature agents of disease--even if it had been known they were responsible.

The Black Death inspired terror for hundreds of years--now imagine telling someone in the 1300s that a simple vaccine would make mention of the plague shrug-worthy. And that even once contracted, the disease could be stopped by antibiotics if caught early on. They might not have been able to believe it. Plague had been too terrible, too sweeping, too much part of their lives.

And that's how we think about cancer.

We've spent decades feeling helpless about cancer's wretched march through the cells of those we love. Words like "metastasized" and "stage four" bring dread to our stomachs; these are words we have no armor for. When we hear about "the cure," there's a certain incredulity that there ever will be one. Cancer is so powerful. But I'm heartened by the analogy that we can eradicate cancer like we did the plague.

There will be a breakthrough. Today, for the most part, only third world countries suffer plague outbreaks, like Madagascar very recently. I'm honestly not concerned about buboes; they don't come up on my maternal radar too much, although 600 years ago my English ancestors probably worried about them constantly, with good reason.

I’m picturing the near future, a day when people marvel that cancer ran so long unchecked…when they pity us for our “Dark Ages” disease. That day is coming. Cancer researchers make strides daily, like Dr. Olson, who has developed “tumor paint” to make it easier for surgeons to excise diseased tissue while leaving good tissue intact, as well as working on anti-cancer compounds, optides. These optides improve the wretched process of chemotherapy which targets healthy and cancerous cells alike—the optides only attack the bad cells.

Jennifer Kranz’s parents have squeezed metaphoric lemons in desperation and grief to pummel them into pulp and lemonade. Their nonprofit organization Unravel promises to “unravel” pediatric cancer through fundraising to support researchers who are eager and innovative and only lack funding. Unravel monies recently permitted Dr. Olsen to hire not one but two interns. Being part of such a tangible step forward towards a cure makes me sleep better at night, although my eyes still burn with empathetic tears when I think about Jennifer, forever lost.

To read Libby's blog or to contribute to Unravel, her pediatric cancer awareness and fundraising nonprofit, visit http://unravelpediatriccancer.org.

A saucy reading at HNS conference

A year ago, I attended the Historical Novels Society conference (then held in St. Petersburg, Florida; the next stateside one will be Denver in 2015). It's an infamous custom that Diana Gabaldon hosts a Saturday Night Sex Scenes Reading where participants gamely step on stage and read a short sex scene from their fiction (no memoirs please!)

Diana selected a bunch of us randomly and emailed us to let us know we'd been picked. I never got a chance to say hello to her before the night of the proceedings. I sat at my table between Kathleen Kent and Alison McMahan (Xina Uhl was there too), nervous beyond measure. I wasn't going to permit myself a (badly-needed) drink until after I had gone up to the stage, and wouldn't you know it....I was picked second to last! I was a frayed nerve bundle sending random neurotransmitter blasts by the time my name was called.

So, picture the scene. We're in a hotel ballroom that holds 600 people. The acoustics are tough, and let's face it: a sex scene read into the vastness has special challenges as opposed to one read from a pillow. I knew that from the last Sex Scenes I'd watched in San Diego a few years earlier, so I'd deliberately chosen a funny scene. Many people can get away with breathy voices into the microphone (including La Dame Gabaldon herself) ...but I knew I couldn't. My best best would be to go with a scene where the sex didn't go right.

Although it was nerve-wracking for me to wait so long to be called, it was ultimately in my favor as many people had imbibed generously and were, let's say, receptive to my reading in a way they may not have been an hour or so earlier. My friend Alison offered to tape my reading on her phone and I shuddered as I declined. I would come to regret that, though, since the official conference video left an unused microphone in the middle of the shot... but at the time I didn't know the performance was being taped.

Diana introduced me and I climbed the steps to the stage without tripping (it's things like this I worry about) and began my little jokey introduction, channeling Justin Timberlake.When I sang the first line of "I'm bringing sexy back" there was one beat where no one laughed and I died a million deaths in that interstice. People were just not expecting something funny as previous readings that night had been intense, romantic, sexy, hot...everything but silly. And then, thank God, laughter came and I launched into the scene.

To be honest, I was surprised by how much people laughed (I've consulted with experts and we all conclude: alcohol), but it made me feel great.When I finished, one person sprang to his feet and gave me a standing ovation. It was C.W. Gortner, a writer I absolutely admire and look up to, and to get his endorsement meant everything. I'm thinking about engraving him clapping on my tombstone when that sad piece of rock is eventually required. Whatever ills may befall me in the coming years, you can't take that away from me.

I went back to my table where congratulations happened, so I didn't hear what Diana said in response. It was only after I got a copy of this tape that I realized she said, "Well, I hope that book's on Kindle so I can read it on my way home tomorrow."

Oddly enough, the book was not on Kindle. It had been published by a small press in Berkeley and the subsidiary rights still belonged to me, so I thought, wow, maybe I should release this as an ebook. And maybeeee that wonderful Diana Gabaldon would be willing to blurb it?

She was!

I sent her a copy, and she read it in the midst of all the hurricane of the Starz casting and filming. I can't to this day believe her generosity in taking the time to read my book and to give such an extravagantly kind blurb. I'm going to need a second gravestone to engrave her on, or maybe I should install some Scottish standing stones, some dolmens, maybe a variation on Stonehenge to thank her. (Yes, I'm morbid; this is the way I roll.)

Diana, if you read this long-ass post, thank you a million ways to Sunday for your hand extended to me. You are a rock-star author and you act like you're in the slushpile: humble, kind, giving, warm, real.

So, the last thing I have to address is, why did I not release the video until literally a year later? One might think I waited to time this with the Outlander Starz release, which would have been smart of me, but the reality is far sadder. The conference was in June 2013, and it took me a while to figure out there was a tape, order it, and then get working to have someone edit it down from literal hours to a brief clip (thank you, Jai Jai Noire!). I'm a natural procrastinator. And so by the time things were underway, I had learned about Jennifer Kranz's diagnosis with DIPG, a fatal brain tumor, in October. Jennifer was a six year old, the daughter of a friend. And suddenly promoting my video seemed endlessly vapid and stupid, so I put it aside and grieved along with everyone who followed Jennifer's rapid decline. She died Feb. 12, 2014. I hope you will watch my video, but I hope even more strongly that you'll visit www.unravelpediatriccancer.org to learn how you can help combat this vicious, despicable disease.



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Brave

The Kranz Family in 2013. Jennifer is in yellow.

The other day, I met up with Libby Kranz during a trip we took to Gilroy. Libby is the mom of Jennifer, a six-year-old who died of DIPG February 12 this year. We met at a park. At one point, during respective kid tussling, she started talking to a woman a short distance away. I concluded it was a friend she had run into.

It wasn't. Libby came back, bristling with energy. The woman was a stranger, and Libby had just approached her--a cold call of sorts--to tell her about Jennifer.

She was being brave.

No one wants to walk up to strangers and tell them about a cancer that gives a 9 month life expectancy from diagnosis (Libby's daughter got a third of that time), tell them how only one cent of every dollar donated to the American Cancer Society goes to pediatric cancer, and tell them how the federal government funded pediatric research back in 2008 but then somehow the money has been held up ...

Nothing is going to help Libby's daughter. But something fierce, powerful and brave is going to save other people's daughters and sons. It's Libby, and the awareness she is raising for this devastating monster cancer that steals children. She was talking that day about business cards being printed up, so when she went to talk to people, she'd have a card to hand them. She is focused. She is committed. She is brave.

It's hard to talk about, and hard to think about. Libby admitted on her blog that before her daughter was diagnosed, she too would change the channel when the St. Jude's commercials came on. But the fact is, cancer is only easy to ignore if you don't know someone affected by it--and these days, that sliver of the population is getting smaller and smaller.

What can you do? Read and share Libby's blog. Contribute to the fund at Stanford University where Jennifer's cells are being studied--she had a very aggressive form of DIPG and thus her cells may contain valuable information to unlock this disease. If you feel proactive and want to physically get out there to help the world's children, consider "fluttering" . . . a genius plan of Libby's to both bring awareness to the cause and raise funds.

Being brave isn't just about doing things that scare you. Sometimes it's about stepping up the plate and helping when you can.



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Posting guard

A number of years ago, I found my husband lying on the floor next to our child's bed in his blue scrubs. He hadn't bothered to get a pillow or a blanket. He was in a fetal position, a sky-colored shrimp. When he awoke, I asked him if she had had a nightmare, since I hadn't heard her calling out, and he said no. There had been a child at the hospital where he worked who hadn't made it. Coming home from a late shift, he had gone in to make sure his child was all right. He stayed all night, watching her, grateful for her careless, graceful, magnificent ability to breathe.

When I started reading the Love4JLK blog, written by Libby about her daughter Jennifer's cancer diagnosis, I felt that same compulsion. What was once a nightly ritual--the checking of the children, that most exalted and beautiful of parental rights, our reward for whatever struggles we endured during the day, or whatever struggles we endured to bring the children to the earth--became more. I slept on the floor. I brought them into our bed. I clung to them. And I wished in a sense that I could do the same for Libby, post a guard for her and keep breath in the lungs. Now that her daughter has died, I continue the metaphorical desire to be the watch dog, to snarl at the dark. But metaphors don't mean much when children have died.

So I am turning my back on that and looking for pragmatic answers. Real things, that can be done in real life. Nothing will bring Jennifer back, but in a very real sense, some of these may keep another child, a child of the future whose diagnosis is written in her cells, with us, safe in her bed.

1. Read Libby's blog and share it widely in social media. You never know what may arise, when some powerful person reads her blog. It may be a Congressman or Congresswoman who rises up out of ire and grief to help fund pediatric cancer research. It may be a wealthy person who can, with one click of the mouse, completely fulfill the goal of the Jennifer Kranz Research Fund. Speaking of which....

2. Consider a donation to the Jennifer Kranz Research Fund. $30,000 of the $100,000 goal has been met thus far. What is the fund? It's research at Lucile Packard (Stanford University) where researchers are studying the literal tumors from Jennifer's body. She had a particularly aggressive form of DIPG, and her tumors may yield valuable information about this cancer.

3. Share widely this short youtube video in which Libby requests that the already-allotted cancer funding in the U.S. be more fairly distributed. It is shocking to learn that only 4 percent of cancer funding goes to pediatric cancer--and kids are more than 4% of the population. http://youtu.be/0CLYthNe1k4

4. Tweet the video to your representative. Almost all of them have Twitter accounts.

5. Write your representative. I hope to soon post a sample letter you can cut and paste, print out, put in an envelope and mail out. Five minutes and 40 cents.


6. Be gentle. Our time here is too short, even when not cut short.



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