Monday, June 20, 2016

(Un)Comfortably Numb

I was an Army brat, and so we bounced around a lot when I was a kid. I went to three different high schools because of my dad's job. I don't think anyone can do that and not be a little bit of a brat. For two-and-a-half years, for what was the end of middle school and the first half of high school for me, we lived in Orlando.

Orlando.


I was 15 when we left, so I didn't know much about nightclubs (a little, but not much). It was a place of Disney (the scene of even more heartache last week), and of short drives to the beach, and -- if I'm being totally transparent -- the backdrop to one of the more difficult times in my life until cancer. I was a 14-year-old girl who found my place with the wrong crowd, skipping school regularly and threatening to leave my family for my much older Puerto Rican boyfriend. It is a place without many fond memories for me, somewhere I try not to think of too often.

And yet.

I don't keep in touch with anyone from that time, but I still checked the victim list from last Saturday night's atrocity to see whether I recognized any names. Most of the dead were my age or younger. I didn't know anyone of the 49 victims personally, but I still grieved for such a grotesque loss of life: for the 2-time cancer survivor mom who was dancing with her gay son and took bullets for him, for the 19-year-old from Arizona starting a new life in a new town, for all of them.

This isn't about me, or my memories, or my sliver of grief compared to what those victims' families and friends must be feeling, compared to what the LGBTQ community must feel. My friend Aaron wrote that he is having nightmares about being shot in a bar. He doesn't feel safe. He can't sleep.

This is not about me, and yet it's about all of us.

I had an easier time talking to Quinn about why we can't have another baby -- because "mommy got really sick when you were little" -- than I will have when it comes time to talk about why tragedies such as Sandy Hook or massacres like what happened in Orlando keep happening in our country. On Twitter, one mom said she had to tell her kids, they deserved to know why they were having lock-down drills at school. I dread the day I have to strip away Quinn's innocence even more than I already have.

This mass-killing wasn't just about our shitty gun laws. Or about a homegrown terrorist claiming allegiance to ISIS to mask his own cowardice. It was also a hate crime against a particularly vulnerable community that has seen more hatred than most. As my friend Beth put it:

My social media feeds are mostly one-sided, filled with calls to change our country's gun policy (a vote for some changes are happening on the Senate TODAY, but are unlikely to pass given the political climate in Washington right now), and filled with support for the LGBTQ communtiy. In a sense, I have self-selected to be sheltered from the hate and from whatever nonsense Donald Trump is spewing at any given hour.

But none of us are immune to attacks like the ones in Orlando, Sandy Hook, San Bernardino, Aurora, or Charleston. None of us are sheltered from that. We are no longer safe in our schools, our movie theaters, our houses of worship, our night clubs, or at our jobs. How's that for freedom?

I don't usually get political on here, but enough is enough. I can't on the one hand have this space where I have a voice that people actually read, and on the other not speak up when something seems so intrinsically wrong in our world. I had to talk to my son about cancer, hear that big scary word come out of his little boy's mouth, tell him over and over again why I have to have scans that prevent me from being around him for hours at a time, and crush his sense of security that his parents will always be okay.

I do not even one iota want to also talk to him about how evil some people in the world are, how some people hate others for the color of their skin or for who they love, but especially how as a country we watched as 20 six- and seven-year-olds were gunned down at school, and a Congresswoman and her constituents were shot in a parking lot in front of a grocery store, and then another 49 souls massacred while they were DANCING, and we DID NOTHING. Let's do something. November is coming.

Friday, June 3, 2016

What Does the Beast Mean to You?

From left to right is Sheryl, my friend from college JT, me wearing a reminder sash that someone is diagnosed with breast cancer every 3 minutes in this country, and Ginelle, just after finishing our first Avon Walk in Santa Barbara in 2012. 
I was on a training walk with my friend and team co-captain Ginelle a few weeks ago while visiting her in San Diego. It was Mother's Day, and our conversation ran the gamut from our kids' friendships  and education in public schools to taking care of our mental health to the upcoming election, god help us.

This is how these types of walks tend to go when you're on the trail with a woman who has seen you at your literal worst, who has filled your freezer with homemade chicken pot pies and made pureed organic baby food for your 8-month-old, whose friendship has grown out of an openness and willingness to talk about issues that sort of surprised me when was first getting to know her.

Several miles into our walk, she said to me, "You know, I've been thinking about what the beast means to me." At first, I didn't know what she was talking about. It took me a second to catch up. Then it dawned on me. We call our team "Team Booby & the Beast."

"You mean, beyond cancer?" I asked.

"Well, yeah," she said. "Since you're doing better, it's taken on a bigger meaning to me. It's not just about your cancer or anyone's cancer. I think of it almost as the struggles we face as women. The burdens we carry, particularly with the election we're facing. Don't get me started on that."

I did get her started on that. We talked about Trump and the setbacks his presidency could mean for women. We talked about her daughters and my son and what we want them to know about their bodies, their abilities, the people they share this world with, and how to teach them respect for all of it. We talked about women who work, and women who -- like us -- stay home with our kids but used to have careers outside of motherhood. We talked about how lucky we are for the healthcare we have. We talked about privilege. And the disadvantages that still exist for women.

Recently, in two separate posts on social media, I was brought to tears about the struggles women still face in our society, not to even mention other societies. One was about a book on evolutionary biology with contributions from some of the top experts in the field, which failed to include a SINGLE female voice, even though I know plenty of women scientists and I am not even one. Second was this video that just speaks for itself about where women are in the world today.


***

This weekend, I am in Chicago with Ginelle and seven other teammates -- men and women -- to walk in my fifth Avon Walk, 39.3 miles over two days to provide funding for both research and underserved communities affected by breast cancer. I am pinching myself that I get to do this, that I am still around 5 years after my diagnosis, that we have so many supporters we have raised more than $32,000 and are currently ranked third for team fundraising in all of Chicago. I'm a little proud.

As I was packing for our trip, Quinn turned to me and said, "I can't wait to see you walk in Chicago, Mom!" I was surprised by the tears that poured out of me. I walk for him, after all, and this is the first time he'll be around to cheer me on. I pulled him in for a big hug and wiped the wetness from my cheeks.

Cancer, specifically metastatic cancer, will always be my beast. It is the thing against which I rail -- in whatever small way I can make a difference -- until my friends stop dying.

And I love that my son gets to see this side of me. He is old enough now to understand a bit of what it means to give back, to do something greater than yourself, to start to understand how breast cancer changed our lives. Earlier in the day, he had asked me if everyone in the world knew about the Avon Walk.

Ha. Not yet. Not even everyone knows about metastatic cancer, but we are working on that.

***

A number of patient advocates and friends of mine are also in Chicago this weekend, gathering to share their stories and insights with researchers at ASCO, the American Society of Clinical Oncology's annual meeting. I wish I could do both. Instead, I will be checking my Twitter feed regularly for updates on precision medicine, immunotherapy, advances from the Broad Institute, and quips from the brilliant women I get to call my friends.

Here we go, Chicago.

Wednesday, May 18, 2016

A Series of Catastrophes & Miracles


I honestly wasn't sure about reviewing this memoir on my blog. I haven't even been writing about me on my blog lately because I can't find the words. I don't know if it's the vernal equinox, or the fact that we finally chose a kindergarten -- hallelujah -- after months of debates and tours and assessments and non-refundable deposits, or if it's because I'm also training for and fundraising my butt off for a 39.3-mile walk in a little over two weeks. 



Whatever the reason, I haven't found time (or words) to write lately.

But the publicist appealed to the mom in me. The synopsis she sent promised the story of a mom diagnosed with metastatic cancer who experiences nothing short of a medical miracle. More than anything, I wanted to read A Series of Catastrophes & Miracles because who doesn't love a good miracle? Isn't it what we all hope for? So I said yes and received my copy in the mail a few weeks ago. 

From the opening "Spoiler: I lived.", I was hooked. I freaking devoured this book. So if you're looking for a more balanced review, you may want to look elsewhere. I'll be over here re-reading my copy a few more times. You should go get your own.

As a stage 4 cancer patient, of course I could relate to so many of Ms. Williams' experiences -- MRIs and PET/CT scans, learning the language of cancer, facing your mortality far younger than you ever expected, even dealing with scars because your body has been carved up in an attempt to rid you of the disease that might kill you. "I do what I can to cover my scar, so the sun won't burn more cancer around the part of my scalp the doctors removed--and also because I don't want my freakishness to make people uncomfortable. And by people, I mostly mean my own children," Ms. Williams writes. She is witty and snarky and reminds me of some of my best friends.

So many times in the book, I wished I could sit down with her over coffee and scones -- or a glass of wine -- to say, "Me, too. I've been there." I've lost too many friends. I've marveled at my response to treatment when others whose disease seems the same on paper don't fare as well. "This is the cruel reality of successful cancer treatment. You want so much for everybody to get what you got, and for it to work like it did on you, but that's not how it happens. Instead, getting better often feels as random as getting sick was," she says.

I wanted to give Ms. Williams a high-five and a hug for lauding the scientists who hand her her miracle. She writes, "And just to be perfectly clear on this point in case somehow you missed it--I didn't get better because I prayed correctly or because I'm strong. I got better because the science worked on me." A-freaking-men. The author's calls for more research -- because sometimes it works! -- are woven throughout the narrative, and I hope above all this book spurs a loud public cry for science funding increases.

As a wife who's watched my husband lose both his parents, there were uncanny parallels in Ms. Williams' story and my own. Through the difficulties of loss, and how a marriage can contain enormous grief yet still find space for enduring love, I found myself wanting to underline and highlight entire chapters. "Yes, this. And also this," I kept thinking, often through tears.

And as a mom, I could also relate. In one passage, Ms. Williams writes, "When I walk in the door at last, the first thing I do is the first thing I always do when I get in late. I peek in on the girls and their dreaming forms. Sometimes, when I look at them, I see the babies they once were, all flushed and milk drunk in my arms, their chubby hands curled around my finger. I remember them pulling up to standing in the crib, then plopping down on unsteady legs with surprised giggles. Other times, I look at them and see two young women, a bride and her maid of honor at a wedding, or two grubby travelers throwing down backpacks in the hall after a month hiking Central America together. I want to be there, I think, as I watch them from the doorway, for all of it." 

I put the book down then, got out of bed to go check on Quinn, and listened to the sound of his rhythmic nighttime breathing. I know this mom. I know this love. I want to be there for all of it, too. Here's to more miracles.

A Series of Catastrophes & Miracles cover

About A Series of Catastrophes and Miracles

• Hardcover: 304 pages • Publisher: National Geographic; 1 edition (April 26, 2016) A wry, witty account of what it is like to face death—and be restored to life. After being diagnosed in her early 40s with metastatic melanoma—a "rapidly fatal" form of cancer—journalist and mother of two Mary Elizabeth Williams finds herself in a race against the clock. She takes a once-in-a-lifetime chance and joins a clinical trial for immunotherapy, a revolutionary drug regimen that trains the body to vanquish malignant cells. Astonishingly, her cancer disappears entirely in just a few weeks. But at the same time, her best friend embarks on a cancer journey of her own—with very different results. Williams's experiences as a patient and a medical test subject reveal with stark honesty what it takes to weather disease, the extraordinary new developments that are rewriting the rules of science—and the healing power of human connection.
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About Mary Elizabeth Williams

Mary Elizabeth Williams is a senior staff writer for award-winning Salon.com whose columns are regularly among the top viewed, commented on, shared, and cited as the best of the week. The "Lab Rat" series on her clinical trial was nominated for the 2012 Online Journalism Award for Commentary, and her essay on receiving a melanoma diagnosis is in the Harper anthology The Moment, an Entertainment Weekly "Must List" pick—alongside essays by Elizabeth Gilbert, Jennifer Egan, and Dave Eggers. She is the author of Gimme Shelter: Ugly Houses, Cruddy Neighborhoods, Fast Talking Brokers, and Toxic Mortgages: My Three Years Searching for the American Dream. A starred Booklist selection,Gimme Shelter was called "poignant and funny" (Kirkus), "a must-read" (New York Daily News), "hilariously evocative" (Time Out Kids) and "compelling" (Publisher's Weekly). She lives in New York City with her husband and two daughters. Find out more about her at her website.

Monday, April 25, 2016

Standing on the Shoulders of Activists Who Came Before Me

A couple of weekends ago (and I really cannot believe it's taken me this long to post about it, except I also sorta can, because -- well, life), I was in Chicago for HealtheVoices16, a conference I'm proud to have advised on over the past few months. I got to help shape a weekend in which nearly 100 of us gathered to talk about our online communities across a number of health conditions -- HIV/AIDS, diabetes, mental health, cancer, Crohn's/colitis, and rheumatoid arthritis, to name a few. We talked, but we didn't just talk -- we made deeply rooted connections, the theme of this year's conference.


One example: AnnMarie Otis of Stupid Dumb Breast Cancer was there, and it was our first time meeting in person even though we've been in touch on social media and even over the phone for years. Yes, she is as tiny and fierce and passionate in person as she is in her online presence. We hugged and cried a little. We talked about our mutual love of Birkenstocks and our Sunday Italian family dinner traditions. We practiced yoga together. I'm the one in the crazy pants.



On Saturday night, AnnMarie was at my dinner table. We sat next to an HIV activist, Aaron Laxton, who is as brilliant as they come. I could listen to that man talk all day about viral loads, clinical trials, and the work that still needs to be done in bridging the gap between the 'haves' and 'have-nots' in this country (not to mention the world at large).

I implore you to click on the links to Aaron's story. He talked to me about prognoses for those infected with HIV; it's pretty good so long as the person receives treatment. AnnMarie and I marveled at how far the metastatic breast cancer community still has to go. "We are in the freaking dark ages," she said to me at one point. To which Aaron responded, "I am standing on the shoulders of the activists who came before me. Let me help your community."

And then I started crying. Again.



***

As part of my conference duties, I had the honor of introducing a session speaker, Trevis Gleason. Trevis lives with multiple sclerosis (a word, I learned, that is very hard for me to say when speaking in front of a group). He's also a former chef from Seattle who now spends part of his time in Ireland. After blogging about MS for some time, Trevis wrote a memoir I can't wait to read, Chef Interrupted: Discovering Life's Second Course in Ireland with Multiple Sclerosis. His talk to our group was about taking our advocacy efforts offline, something I've been trying to do more of over the last year.

I've got a conversation scheduled with my agent this week about whether my book has garnered any interest from publishers (WHY DOES THIS PROCESS TAKE SO LONG). Aaron (the guy in the photo above) is going to teach us in the MBC community some advocacy tricks. I am participating in a Twitter chat about metastatic breast cancer with the Tigerlily Foundation in early May...which is suddenly next week. And I am waiting to hear about an advisory role with the Young Survival Coalition.

I am inspired, and can't wait to see what lies ahead.

But first, camping with Quinn's preschool this weekend. Because -- well, life.

** Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.**

Thursday, April 7, 2016

In Which I Turn a Bath Mat Into a Magic Carpet

Are tantrums at this age normal? (I mean five, not thirty-seven, by the way. I'll get to my own tantrums in a bit.)

I don't know what I was thinking, but I didn't expect this. (How many times have I uttered that statement in the last five years???) I assumed this behavior would dissipate after age three, and be totally gone by now. I thought we'd turned some magic corner (those exist, right?), a corner that led to a million questions a day and incessant curiosity, but a corner nonetheless. I mean, he can brush and sometimes even floss his own teeth, for goodness' sakes. I was prepared for the occasional whininess after too little sleep or crankiness caused by low blood sugar. I mean, isn't that what the Snickers commercials are all about? But full on tantrums? Those weren't on my radar.

Then again, what do I know about five year olds?

After a bedtime-routine battle of epic proportions the other night -- including a showdown over the need to pee before bed and a scene that would have been hilarious if there hadn't been so much defiant yelling involved as he HELD ON TO A BATH MAT TO AVOID BEING LIFTED ONTO THE TOILET (well played, sir). Anyway, after this, once I'd gotten him settled in bed or so I thought, talked to him about behavior that's acceptable and behavior that is unequivocally not, Quinn came out, found me in the kitchen, and told me in a small voice that he didn't think I even liked him anymore.

That sound you may have heard?

That was my heart shattering in a million pieces. I'm still looking for a few of the shards on my kitchen floor.

Oh, my boy. My heart. My world. I am so, so sorry for letting you ever feel that insecurity, that doubt.  Look at you; you are perfect.


In that moment the other night, I scooped Quinn up, held him in my arms even though I can tell I'm getting close to a time when I won't so easily be able to manage that feat. I assume my heart will fall apart again when I can't pick him up anymore -- or worse, when he doesn't want me to. I told him that even when he misbehaves, even when we don't like his actions, we will always like him. Always love him more than anything.

I reminded him that sometimes he doesn't like the things I say or decisions I make but he still loves me. (I checked).


And then I thought, of course, of my own mom. How I must've done these types of things to her well into high school and -- oh, yeah -- right up through last weekend when I threw a fit over something she shared with my brother that I wasn't quite ready for him to hear. At worse a minor infraction, in the grand scheme of things. More likely, a misunderstanding. But oh how I yelled. Of course, Quinn heard that fit of mine, asked questions about it, probably formed connections in his developing brain that maybe it's okay to yell at people you love when you're upset.

It's not okay. But it happens. Hey, Mom? I'm sorry.

This week, I'm re-reading No Drama Discipline: The Whole-Brain Way to Calm the Chaos and Nurture Your Child's Developing Mind. A book that tells me to take heart: "The fact is that none of us are perfect, especially when it comes time to deal with our kids' behavior. Sometimes we handle ourselves well and feel proud of how loving, understanding, and patient we remain. At other times, we lower ourselves to our kids' level and resort to the childishness that upset us in the first place. . . .

So here's hope: those not-so-great parenting moments are not necessarily such bad things for our kids to have to go through. In fact, they're actually incredibly valuable.

Why? Because our messy, human, parental responses give kids opportunities to deal with difficult situations and therefore develop new skills. They have to learn to control themselves even though their parent isn't doing such a great job of controlling herself. Then they get to see you model how to apologize and make things right. They experience that when there is conflict and argument, there can be repair, and things can become good again. This helps them feel safe and not so afraid in future relationships; they learn to trust, and even expect, that calm and connection will follow conflict."

I'm highlighting just about every word in this book right now. Yes, some of these outbursts might have to do with us carrying a heavier than normal load of uncertainty lately. Thanks for checking in on me; mostly, we are okay, just regaining our equilibrium as a family and focusing on that calm and connection.