Friday, August 19, 2016

Flashback Friday

Twenty years ago, in August of 1996, I was a 17-year-old girl about to start college. I had just flown across the country from Seattle to Baltimore, Maryland, by myself. My parents and I had said our tearful good-byes at the gate at SeaTac (back when you could still walk people to their gates at airports). I'd get picked up at BWI by upperclassmen on the welcoming committee. There were about four of us who rode nervously in the university-issued van to campus, our new home.

I moved into an un-air-conditioned, stifling dorm room at Johns Hopkins University, all of my worldly possessions in a large suitcase, plus a box or two I'd receive from home in the next couple of weeks. I had my rolls of quarters for laundry and phone calls home, my shower tote for carting my toiletries to and from the shared bathroom, and the weird extra-long twin sheets made specifically to fit those narrow dorm room beds. I just needed to go buy a box fan to deal with those last few weeks of swampy mid-Atlantic summer.

That first week is kind of a blur of freshman orientation activities like figuring out who has your same area code, if anyone, and things like finding the financial aid office for a check so I could buy books. And then I started a work-study job at the campus bookstore, so I got to see what classes everyone else was taking, too. The bookstore was mercifully air-conditioned, and in a basement, so I was happy to spend time there, even if I was only making $5.25 an hour.
At some formal my freshman year. LOOK HOW YOUNG!
***
Fifteen years ago, I was a college graduate living on Capitol Hill in Washington, DC, and working as a lobbyist. It was late summer 2001.

I was also training for my first marathon. My marathon training team would meet early on Saturday mornings to run along the historic C&O canal path past Georgetown, into the shaded woods in Maryland, through old tunnels, for miles and miles. It was muggy, but the conversation was good and the cause was worthy. I had joined the AIDS Marathon Training Program to raise money for DC's Whitman Walker Clinic, at the time the largest service provider for AIDS patients in the District. My marathon would be at the end of October in Dublin, Ireland.
Prior to security barricades and guards everywhere, ca. 2001
Then September 11th happened. I was at a client office in Northern Virginia that brisk, beautiful morning, listening to a presentation on systems security when everyone's phones and Blackberries started buzzing. How rude, I thought. But then the whispers made their way to the podium and the speaker stopped speaking. "A plane hit the World Trade Center," a colleague said to me, quietly. I had been in the World Trade Center the weekend before. We all gathered around a TV in the conference room to watch the news coverage, wondering what the hell had just happened in New York. It looked like footage out of a movie. This can't possibly be real, I remember thinking. And then the Pentagon was hit. 9:37 a.m. It suddenly became crystal clear we were under attack.

I was able to reach my boss, who said they were closing the city. She asked whether I had a place to stay. I called a college friend who lived in Gaithersburg, Maryland, outside the beltway. I could crash with her until the city opened again and I could get back to my apartment. We drank cheap wine and cried about the new world we were living in.

Two days later was my twenty-third birthday. I didn't much feel like celebrating.

But I did get on a mostly empty plane the next month and I ran that marathon in Ireland.
Proof.
***
Ten years ago, I was just returning from studying abroad in South America. I had finished my first year of law school and had taken the opportunity to spend six weeks in Santiago, Chile (where I spent much of the time sick with what was probably a bronchial infection) and Buenos Aires (where, recovered from my mystery illness, I ate my weight in grass-fed beef and red wine).

Chris and I had been dating about a year by then. Our schedules were equally crazy. I'd taken leave from work to go to South America, but was back at my job and school that August. He was frantically trying to finish his dissertation and typing away in his office at the Smithsonian most nights until the last bus came by, sometime around 1:30 in the morning. We saw each other on the weekends, where we'd rehash our weeks over runs through the zoo or beers in Adams Morgan. Or both, if we were feeling ambitious.

I was exhausted, but who cares when you're twenty-seven and in love?

In 2008, I graduated law school, followed Chris to Arizona, took and passed the bar here, and planned our wedding. We got married that fall, so broke it felt like we were in college again, but we had each other. And at least one of us (not me) had a job.

***
A little more than five years ago, Quinn was born. I'd settled into a job with a great team, Chris and I had purchased our first home (a tiny thing built in the 1950s), and Arizona was even growing on me. Life was so good.


Then on August 19, 2011, I went in for an exam with a breast surgeon who asked me to go to radiology right away. I still remember what I was wearing, a cute belted smock, navy with white flowers. I later threw it away. The radiologist took one look at my ultrasound pictures and told me she was 99% sure this was cancer.

Time seems to stand still at moments like this. I'll never forget where I was for 9/11, or what it felt like those first few days away from home at college. I'll always remember the prickly tentacles of fear that crept up the back of my neck when I was told I had cancer that Friday afternoon five years ago.

I wouldn't learn until later how aggressive or extensive it was, but I knew my lump was large. I'd thought it was an infection from breast-feeding. I was shattered to learn how wrong I was.

Five years later, I'm still here. A woman in my workout class this morning said, "Oh, congratulations! Five years is when your risk for recurrence goes way, way down, isn't it?" She was so excited, I hated to burst her bubble. But I chose honesty.

"No, it's just when they stop tracking us," I said.

She looked crestfallen. "Oh," she said.

"But it still feels like a milestone," I added, throwing her a bone. But also because it's true. It does feel like a milestone some days, like a rock in my throat on others.

Quinn is finishing his second week of kindergarten today. Chris just started teaching a new semester at ASU. I don't often know how to celebrate this day, or whether it's appropriate for a cancerversary. I mean, it was a terrible day of our lives, but then, look how far we've come. A lot of times I give the day a moment of silence and move on, but I think five years deserves something. Ice cream and a movie is sounding spot-on.

Monday, August 8, 2016

Gobs and Gobs (Rhymes with Sobs) of Emotions

Hey, there. Remember me?

I realize I've been away from here for awhile. That I've taken my annual summer vacation, and then some. I've missed you guys, but my words have not been working. As one blogger put it, "when I can't write everything, I somehow can't write anything." And no, before you even wonder, Chris and I are not getting a divorce (like the blogger I quoted). But there has been some stuff going on that I haven't been ready to write about. I've had what you might call a needle-scratching-across-the-record moment, and I've had to regain my bearings and catch my breath. I'm still trying to find my voice again.

I considered writing a whole post about going to my 20-year high-school reunion in July, which if you'd asked me last summer I would've said optimistically I'd be here to attend, but truthfully, I wasn't so sure. Not in the I'm-not-sure-I-want-to-do-one-of-those-things kinds of ways, because I get reunions are not everyone's jam, but in the I-might-be-dead kind of way. And then here it was, and there I was doing the small (and not-so-small) talk. I reconnected with old friends and wondered why we'd lost touch. Later, after we'd left the party, I sobbed with my oldest girlfriend because it was monumental. Because we've been through so much these past five twenty-two years.

Five years.

This summer has felt like I'm on the edge of a precipice. It could be the aura of magic and mystery I've superstitiously (stupidly?) placed on my five-year cancerversary coming up later this month, like it's some sort of expiration date for cancer, even though I know CANCER DOESN'T FOLLOW THE RULES. I am lucky as a leprechaun that I get to be here to wrestle with my emotions about this date again this year. Do I pop champagne to mark the anniversary of one of the worst days of my life? Write a letter to my younger self about what I wish I'd known? I will probably take a yoga class and cry in child's pose.

When I was diagnosed, the statistics said I had a 20% chance to make it to five years.

TWENTY PERCENT.

I am grateful, above all else. But there is also a healthy (and really, that's questionable) mix of fear and guilt as well. Every day another friend writes of the pain she's in, or has to have a port placed on her BRAIN to deliver chemo directly to it, or has to have her liver biopsied to see whether her cancer has jumped the fucking shark. Or died. This weekend, I learned of another friend who lost her life to metastatic breast cancer. And a fellow participant in the Story Half Told project has entered hospice. This is my tribe, and I want them all to be as lucky as I've been. But that is just not the way it goes with cancer.

My therapist has suggested I give myself a break this month, that I take it easy while my brain's emotion centers do a lot of processing. Except writing is kind of how I process, so here I am.

Even bigger than 5 years of cancer is the fact that Quinn started kindergarten today.



KINDERGARTEN.

How's that for a precipice? I can't even look at my sweet child without tears welling up in my eyes lately. How incredibly fortunate am I, that I was able to shop for new clothes and school supplies with him, that I could relish in those last few days of summer with my favorite person, that I held his hand at meet-the-teacher day and helped him locate his cubby? So fortunate. So emotional.

In fact, these emotions are too big to contain. They are spilling right down my cheeks as we speak.

As I tucked him into bed last night, I felt a strange knocking in my chest and throat, like my heart was actively trying to escape my chest through my neck. I audibly sobbed as I choked on it, and Quinn wordlessly handed me his current favorite stuffed animal to comfort me. Quinn lay across me, with his head on my belly. I held his foot in my hands, measured it against my palm and wondered how the last five years have passed in a blink.

A photo posted by Jen Campisano (@jencampisano) on
For so much of his life, I wasn't sure I would be here for this. I've spent so long preparing for the worst, and hoping down to the core of my being for a chance at the best. Driving last week, as Quinn played a game on my phone and giggled in the backseat, I listened to Damien Rice singing Leonard Cohen's iconic song. Suddenly I understood exactly what it meant for something to be a cold and broken Hallelujah.

I don't remember who said it, but there's a quote about how children will break your heart, just by the simple act of growing up. And it's glorious, but, oh, how it aches. Still, for now at least, I get to be here for the best of it. How lucky am I?

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.
Add to Goodreads badge
Purchase Links

Mary Elizabeth Williams AP

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.