Put Your Own Oxygen Mask on First

Quinn and I spend half an hour or so most nights reading side-by-side in his bed before I tuck him in. He recently suggested I start reading some of his books, and then he'll read them when I'm done. We have our own two-person book club and so far it is one of my favorite things that has happened to me as a parent. Right now, I'm a few chapters into book two of the Book Scavenger series by Jennifer Chambliss Bertman. The series is about a couple of kids who crack literary puzzles and codes to find hidden books and also solve bigger mysteries. The second book, the one I'm on, is called The Unbreakable Code.

I'm one of those people who's always got a handful of books on my nightstand, and right now I'm also reading Creative Trespassing: How to Put the Spark and Joy Back into Your Work and Life by Tania Katan, a local creative genius and also breast cancer survivor. I met Tania through my friend Sandi a couple of years ago at a storytelling event Tania was emceeing. And listening to her engage the crowd with her enthusiasm for story itself, I decided then and there I wanted to be her when I grow up. When her book came out a few months ago, I grabbed a copy, but it has taken me a little bit to dive into it because time does not grow on trees. Or something like that.

As I was reading Creative Trespassing the other night and highlighting and drawing stars next to passages left and right, including, "The moment you choose to let the world see the real you -- messy, imperfect, warts and all -- is the moment you choose to shine too."

A little further down the page, Tania writes, "And then I look on my  refrigerator to see the poem I placed there in case of an existential emergency, "The Summer Day" by Mary Oliver. The last line of poem is "Tell me, what is it you plan to do with your one wild and precious life?" Oh, it gets me every time. Because this is it, kids. I don't mean to get all life-or-deathsy here, but regardless of what your beliefs are about death or life or life after death, why would you want to squander a single moment of your one wild and precious life?"

I love that passage, and I have long loved that line by Mary Oliver. But here's where it got super weird for me, you guys. The very NEXT night, as I was reading next to Quinn, the kids in the Unbreakable Code book met with a librarian who has a tattoo sleeve on her arm. One of the tattoos is of an airplane carrying "a banner that read Tell me, what is it you plan to do with your one wild and precious life?" Which gave me goosebumps because what are the chances? Sometimes the universe bonks you on the head with these signs, and if I've learned anything, it's to pay attention to the neon signs in your life -- and also lumps and bumps that aren't typical.

And these signs I'm getting lately, I believe, tie into a conversation I was having with a survivor friend recently about self-care versus selfishness.

In a post-cancer world, we survivors are acutely aware of the value of time and the resources that go into how we choose to spend it. For many of us, side effects linger long after treatment ends. Chemo brain is a very real hindrance in our day-to-day lives. Depending on how far out we are from surgeries or other treatments, we may have physical limitations like the extreme tightness in my right pectoral muscle. Many of us struggle with anxiety and PTSD. Despite all of this, we show up in this life because we have seen the terrifying possibility of an early end to it, up close and personal.

We show up by paying attention to our own needs first. Which might sound backwards to some, but what we've learned is that our health is everything. That without it, we are in hospital beds or on chemo chairs or recovering on the couch, and it's much harder to show up as our best selves when we're not well. We know that we can't take care of our families, or advocate for other patients, or live the fullest out of our one wild and precious life if we don't first take care of ourselves. It just doesn't work that way.

This is why flight attendants tell parents to put their own oxygen masks on first. On a plane that has lost cabin pressure, you can't help your child breathe if you aren't breathing.

It's why the spoon theory about how chronically ill patients choose to spend their spoons each day went viral, because others could concretely visualize why we are so frugal with how we spend our energy.

And because I'm on a Brenè Brown kick lately, it's why this quote makes so much sense: "In a society that says 'Put yourself last,' self-love and self-acceptance are almost revolutionary." If we are to show up for this one wild and precious life, we have to engage in self-care, as revolutionary as that might sound to some. So go to the gym, eat the vegetables, have a mom's night slumber party away from your kids, see your therapist, get the massage, walk more, cuddle with your dog, read with your child, do something creative. I am not just talking to the cancer survivors.

On Death + Healing + A Little Bit of Football

I haven't talked to many kids about death. But kids, I find, are generally equal parts curious and blunt. My six-year-old, Quinn, casually asked me last weekend: "What if my baby sister stays in your belly until my birthday, in March?"

"Then I'd be in some kind of record book," I said. "I promise she'll be here in the next couple of weeks."

"What if a mom was pregnant for 5,000 years?" he wanted to know. Then, quickly, "I guess then both the mom and baby would be dead by then."

In the abstract, death is a concept that isn't yet scary to him -- or wasn't, until very recently. He wants to know how old the oldest person on Earth is, why people can't live to be 600 years old, and very occasionally, he'll tell me he's worried we might need to move to another planet because ours is getting too hot. To be fair, we live in Phoenix, where it was still hovering around 100 degrees the week before Halloween. AND his dad is a climate scientist/geologist who studies the correlation between climate change and human evolution, so that could contribute.

Quinn is curious about our collective mortality, but death hasn't seemed imminent in his life (other than my bout with metastatic breast cancer, which he doesn't remember very well, and my mother-in-law's passing away more than two years ago -- also not a strong memory for him).

If you follow me on Instagram, you might have seen that Quinn had his first stitches three weeks ago. Because October wasn't awful enough already.

There's no filter that makes this less heart wrenching. 💔 He's okay but the fear of seeing my baby's head split open is something I don't know if I'll ever forget.

A post shared by Jen Campisano (@jencampisano) on Oct 24, 2017 at 8:36pm PDT

Chris was at a geology conference in Seattle, and Q and I were watching Monday Night Football. Quinn wants to be an NFL player when he grows up.

He loves everything about the game, and cheers for teams as wide-ranging as his flag football team the Patriots to the Seahawks because they're my team to the Cardinals because Arizona to the Eagles because his favorite color is green. Three weeks ago, Mack Hollins, a rookie wide receiver for the Philadelphia Eagles, caught his first career touchdown pass, and in Quinn's estimation, nailed his end zone celebration.

Quinn tried to recreate the dance on his knees, on our couch, and, in a rare moment for him, he lost his balance. In what seemed like slow motion, he fell, head-first, and smacked into a leather-covered ottoman storage cube, then landed head-first on the floor. I didn't think it would be that bad because the cubes are padded on top. But he hit the unpadded, stitched corner, and when I scooped him off the ground, his forehead was gaping open and blood soaked my t-shirt. While I quickly set him down and assured him he'd be okay (as I tried not to show him how terrified I was and ran to the kitchen for an ice-pack and a towel), he kept repeating through his tears, "I'm so scared, I don't want to die."

My heart felt like it was being twisted and wrung out like an old dishrag in that moment.

I promised him he wouldn't die. I called 911 and just a few minutes later, several firemen stood in our living room and assured me he would be fine but also that he'd need stitches. "Can you do them here?" I asked, naively. They don't offer that service, apparently. We went to the emergency room at Phoenix Children's, where several hours later, Quinn got five stitches.

I'm not sure at what point he calmed down -- though it came more quickly for him than me. I was still  sobbing about his head and the wrenching ache in my heart days later, always at night when the house was quiet and my brain started racing again. I am more okay now, though Quinn's words have been replaying in my head the past few days.

***

My friend Beth Caldwell died ten days ago. Her daughter is Quinn's age, give or take a few months. Beth's husband, J, has been posting updates (up until his FB account was blocked because of a troll). Their kids are having trouble sleeping. As someone who still snuggles with Quinn every night until he falls asleep (and lately, I'm falling asleep with him), I get it.

How can you assure children that there's nothing to be afraid of after dark when their world has just imploded?

I haven't known how to write about Beth, but at some point I figure I needed to, whether I know what to say or not. In the last ten days, as Beth's husband points out on Twitter, this country has lost another 1,130 women like Beth to metastatic breast cancer. 113 every damn day. In the last ten days, Beth's husband had to live through their fifteenth wedding anniversary without his lovely bride.

And while we in this community are all too sadly familiar with grieving and death and losing our friends, there are some people who are just different in their scope and impact and the vast vacuum of emptiness felt in their absence. Beth was one of those women, and even now, it is so hard for me to write about her in the past tense. I told her husband that she and I used to joke we wished we'd met in law school, or over bourbon -- anywhere but because of cancer. Stupid fucking cancer.

Yes, you've seen this photo before, but - regrettably - it's the only one I have with Beth. Note to self: take more photos.

I know I'm not the only one who feels this way about Beth. She was a friend to so many of us, and a fierce advocate who led by example. She was whip-smart, even when she thought she was at her worst. And as I advocate in the years to come, I will always ask: would this have helped Beth? Will it do more to keep the Kelly's, April's, Danya's, Dana's, Rebecca's, Jennie's, Nicole's and Kisha's in my life alive? In other words, does it live up to Beth's standards?

I don't know what else to do to carry the torch she lit.

***

I woke up at 5:30 this morning to our meowing cat scratching at our temporary bedroom door. Temporary since we are still in the throes of a remodel because... I don't know? Paint is more complicated than I could have imagined? Even without the hungry cat, I'm not sleeping well. I'm 39.5 weeks pregnant. Waking up forty-five times a night is nature's way of preparing you for the sleeplessness of a newborn, blah blah BLAH. Whatever. I just want to stop peeing every two hours (or every time I sneeze).

This morning, I read through the news and my Facebook feed. I noted that the forecast has us at 86 degrees today. I saw that Beth's husband's Facebook account has been suspended because some terrible person reported him for who knows what... Grieving too hard? And I don't know how to stop being angry.

But then Chris woke up and we had coffee together. And Quinn woke up and I remembered him singing "Hush Little Baby" to my belly last night, how my heart finally felt un-corkscrewed. There was no longer a tornado brewing in my chest. Instead, it swelled to the fullest it has felt in weeks. As the Grinch would say, it near tripled in size, and love poured down my cheeks.

***
Quinn's head is healing. There is a pinkish scar that extends for about an inch above his left eyebrow. I massage it gently a couple of times a day. He's no longer asking me about death. His flag football team has their playoffs this weekend, and baby-willing, I'll be there to cheer him on.

I wish some calendula or coconut oil and a weekend of football could heal every kid's pain and scars so easily.

The Darkness is Only Ever Temporary

Just when I think I've sorted through all of my emotions about my cancer experience, a song comes on Pandora and I ugly cry in front of my six-year-old. And it's a song from Twilight, no less:


But it's also a song Quinn and I danced to at a wedding when I was still in the throes of chemo and scared out of my mind. Hearing it brought me immediately back to that time, and my emotions erupted before I knew what had hit me.

This song interrupted our Scrabble game last week, because that's what we do now, when he's not asking me who will run on the Democratic ticket in 2020 or reading Harry Potter to me or trying to listen to his baby sister's heartbeat through my belly. So much has changed in the last eighteen months, especially, and words often escape me when I'm trying to reflect on it all. I did think I was past the ugly tears.

Clearly, a favorite activity of ours.

This past Saturday marked six years since my diagnosis. Six years of terror, relief, anxiety, grief, hope, and far too much chemo to count. Five years of wondering whether I would live long enough for this little wonder child of mine to remember me. Four (and a half) years receiving chemotherapy, an infusion at least every three weeks. Three years writing a memoir about the whole experience. Two years in chemically-induced menopause. One year since everything changed.

But who's counting?

Last Saturday also happened to be the day ushering me into my third trimester of this pregnancy. I have so many mixed emotions about this particular cancerversary milestone. Six years is obviously something to celebrate, but so is every day. So is a new life growing inside of me, rolling and kicking and hiccuping almost as much as Quinn did in utero. And while I celebrate my own milestones, I am still so angry that so many of my friends are facing this stupid disease. 

Last week, one of my closest friends had a bilateral mastectomy because they found what appears to be early-stage cancer in her left breast two days before her 37th birthday. I naively thought I'd taken one for the team, so to speak, with my group of friends, and that no one else in my immediate circle would have to deal with this shit-storm until we were all at least post-menopausal. I don't know why my brain tries to play tricks on me like that. I should know by now that is not how cancer works. 

I am mad that it is good news when another of my friends, Beth, only has to contend with lung mets that make her cough so hard she vomits and brain mets that send her into seizures. It is good news because at least she is not facing hospice right this minute. At least we have her voice and her brilliant advocacy efforts for a bit longer. And I celebrate because I got to hug her when I was in Seattle last month.

I am terrified about when the other shoe is going to drop, for me, for Beth, for so many of my friends. I worry that I got out of this too unscathed, despite my scars, my lack of breasts, my lack of eyebrows. So I celebrate, yes, but I also cry loud, body-rocking sobs in front of my six-year-old every once in awhile. 

Then a phenomenon like the eclipse occurs, and we pulled Quinn out of school to make a pinhole cereal box viewer and watch the events from a lawn at ASU. The whole country, it seemed, came outside to watch, and I am reminded that the darkness in our lives is only ever temporary. That these moments are magical, and worth celebrating. Here's to the light.

#eclipse2017 I'm taking its lesson to heart: darkness is only temporary.

A post shared by Jen Campisano (@jencampisano) on Aug 21, 2017 at 12:22pm PDT

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.

What I Did On My Summer Vacation

Summer's are for leaving Phoenix as much as possible, it's true, but we are outdoing ourselves this year. Quinn is fond of saying we have to leave or we'll burn up (which might not be far off of the truth). One friend on Twitter asked me if I was moving based on this photo I posted about leaving northern California.

Flamingo Hotel (aka the Dirty Bird), Santa Rosa. Leaving town today and I'm not sure when we'll be back, which is weird for me... but must be completely surreal for my husband, who's called this town home for 34 years.

A photo posted by Jen Campisano (@jencampisano) on Aug 13, 2015 at 8:59am PDT

No, is the answer. We don't have any plans to move anytime soon. As much as I love northern California, we were there to say farewell to my husband's childhood home, not put down roots (although I have to say those Santa Rosa roots look good on us).

In Santa Rosa, we cried and reminisced and told stories about my mother-in-law's giant heart and proclivity for ice cream and possible hoarder tendencies. We hugged family and old family friends and I tried not to think of how many memorials I've attended in the last several years (too many). We packed up memories and memorabilia stored in a house full of love and a lot of pigs (we could have started a pig museum). We sent a few items with sentimental value home to Phoenix and helped Chris's brother get the house ready to be sold. We said good-bye.

Before Santa Rosa, Quinn and I traveled up to Seattle for some healing time in a place that always soothes my soul, with people who never fail to fill our hearts to overflowing. Chris had a work trip to Mexico so I took the opportunity to leave town as well. We hiked to a waterfall where Q accidentally took a dip in a creek and told me the water was "as cold as that time we went to the snow with Grandma Maryann!" How's that for the opposite of Phoenix?

We rode the ferry up to Vancouver Island, where we built castles out of shells and identified whale bones on the beach and made brownie sundaes with Chris's Aunt Kathie (who always knows how to cheer us up).

Photo taken by Quinn!

We went to the top of the Space Needle, and I fell in love with my home state all over again. I drank a lot of coffee (I've heard it's good for the liver). And we roasted marshmallows to make s'mores and celebrated my best friend Alana's birthday as she and I realized we've been leaning on each other and reading each other's minds for more than two decades now. 

I came home practically begging Chris for a place in Seattle (even despite this article). He said I just need to sell my book. I'm working on that. 

After a blissful week in the northwest and an emotional week in Santa Rosa, we drove south east, my husband tells me, to Sacramento for my college friends' reunion -- which this year included 25 of us, eleven of whom were preschoolers ranging in age from eleven months to five years old. It was blissful in its own way, filled with the giggles and cries and overall adorableness of children who are forging the next generation of friendships amongst my tribe. It's pretty special to see.

I've been absent here because I've been really present among some of my favorite people, something I've learned the importance of over and over again the past four years. There is nothing quite like bookending a memorial service for your mother-in-law with separate visits with your best friends and their children for helping your heart heal.

I am so lucky to have such special people in my life (and fortunate that I've been healthy enough and have the means to travel to see them). I hope I don't take that for granted. I hope you all know how much joy and peace and promise you bring to my life. Thanks a million times over for that.

We got home Sunday night, in time for me to return to reality (and chemo) yesterday. As I put it on one Instagram post, "Home from a beautiful, soul-restoring trip to California that broke our hearts and then mended them in the most beautiful way, surrounded by the love of family and friends who are basically family. We are so blessed."

And today, I got to see Quinn off to his first day of his last year of preschool. Maybe it's the steroids, but I was pretty choked up this morning. I am so grateful to be here, to witness this. Four years ago, when I was diagnosed (cancerversary coming up tomorrow), I didn't quite think it would be possible. I repeat: I am so very lucky.

The Color of Forgiveness

I'm sitting here looking at my Mother's Day cards from Quinn -- one store-bought that starts "Dear Mommy, Thank you for tucking me in...", one handmade with a crooked heart drawn on the front. And I'm crying all over my kitchen table. I hugged Quinn extra hard at preschool drop-off today, his last day before the school year ends.

***

In the last few weeks, our family has been facing the continuing decline of Chris's mom's health, which has meant Chris has been traveling up to northern California to spend time with her every other week. Between Chris's travels and my time in DC, we've hardly spent any time together as a family in a month.

Quinn and I FaceTime with Grandma Maryann a bit, when she's feeling up for it, but Chris doesn't want how she's doing now to be Quinn's memory of her, so it's unlikely the two of us will see her in person anytime soon.

At school, Quinn drew a picture for me for Mother's Day, two stick figures holding hands. He tells me, "Mommy, that's me and you!" But on closer inspection, I realize both faces are frowning.

"Why do we have unhappy faces, buddy?" I ask.

"Because we're sad about Grandma."

Oh.

***

All of this apart-ness and upheaval and emotion has certainly taken a toll on Quinn. He's alternately sweet as can be or acting out, defiant about every single thing I ask him to do lately, whether it's brushing teeth or turning off the TV or not running away from me in a crowded grocery store.

Yesterday, as I was driving Quinn to a new park to play with his friend Sydney, I was trying to focus on where the map was telling me to turn, trying to find parking, trying to communicate with Sydney's mom about where to meet without taking my eyes off the road, and Quinn -- in his utter and complete excitement about seeing Sydney -- would not stop asking me, every thirty seconds, how much longer we had until we got there. "Quinn! Can you please be quiet so I can focus on the road?" I asked him more than once, then felt a stab of guilt for being an asshole.

At school drop-off and pick-up the last few weeks, I find my conversations with other moms gravitating toward how tough this age is. This age being 2 to 4? 5? We wonder when it gets easier, joke that we need happy hour at three in the afternoon, talk about pulling our hair out. And even as I participate, I know better. I know how precious this life is, what little (if any) time any of us are guaranteed, how -- difficult or ornery we might all be on occasion -- my time with my boys is everything.

***

This morning, with Chris back in town, I went for a hike. I was heavy-limbed and clumsy. I twisted my ankle (it's fine) and felt unsure of my steps a good portion of the way. Eventually, battered and out of breath and frustrated, I made it to the top.

The top.

A photo posted by Jen Campisano (@jencampisano) on May 18, 2015 at 8:17am PDT

Back down the mountain, my head clearer than it had been in days, I checked my phone and got the punch-to-the-gut news that my friend and sorority sister Jenny's six-year-old son Michael died last night. It wasn't so much a surprise as it was a stark reminder of the brevity of our lives.

Michael had been diagnosed with a rare brain tumor a week before he started kindergarten last fall. Kindergarten.

That one pretty much takes the cake for cruelty, Universe.

And yet, Jenny and her family did not approach Michael's cancer with anger or bitterness. They celebrated his life. They spoke out to raise awareness about (and a lot of money toward) childhood brain cancer. They made to-do lists and checked them off every day, a tally of their accomplishments together as a family.

At his memorial later this week, they're encouraging everyone to wear yellow, Michael's favorite color. Yellow, the color of sunshine and hope, optimism and new beginnings. The color of forgiveness.

So, in Michael's honor, forgive yourselves, parents, for the occasional times when you're not doing your best. Then go hug your kiddos a little closer, a little tighter. You could probably both use it.

You can read more about Michael's inspiring story here and I encourage you to make a donation to the fund created in his honor by clicking here. 

And I'll close with Jenny's own words from that Huffington Post article:

Jenny said she wants to remind parents to "enjoy every precious moment" with their children.

"The truth is that I often complained about how hard it is to be a parent," she said. "I do not back away from that sentiment -- I still think it is hard -- but I wish that in some of the moments when I was feeling overwhelmed or frustrated, I had the perspective to know that I was the luckiest person on the planet to have those kids driving me crazy."

My Teammates In Their Own Words (Plus A Few of Mine)

I've mentioned once or twice that I'm about to lose the second toenail on my left foot. The same one on my right foot is in questionable territory. For about a week after the walk, every time I pressed down on my left toenail, a stream of blister liquid would squirt high into the air like the fountains at the Bellagio. The erupting has finally subsided, but my toe still throbs at the end of the day, a steady drumbeat bringing me immediately back to the 39.3 miles in Washington, DC the first weekend of the month. Plus another 4.8 miles criss-crossing Capitol Hill the Tuesday afterward to advocate to whomever would listen for an end to breast cancer. My feet were not entirely pleased, but they will recover.

A few of us in front of President Obama's house.

As my friend and veritable co-captain Ginelle says, it's not like I'm losing another body part. The blisters are painful. But as many shirts and temporary tattoos over the weekend read: "Blisters are temporary. Fierce is forever." And toenails grow back. Breasts, sadly, do not.

Ginelle brings me to near tears every time she describes the metaphors surrounding the walk: the pain and frustration when you don't think you can keep going, but then you remember it's temporary. It's only two days. The walk certainly isn't chemo, but it gives a peak into the determination necessary to push through when the going gets rough. Looking around, there are women and men in far worse shape, forging ahead despite their obvious limping. There are kids who've recently lost their mom and who stop at every mile marker to wipe away their tears and take a proud selfie. So you see all these people marching onward, and it pushes you to keep going, too.

I asked my teammates, many of whom were first-timers, for their thoughts on the walk. I am beyond flattered by what they had to say about me, and largely because of them I'm inspired to do this all over again next year. Here, in their own words, are some of their descriptions of our weekend in Washington.

Amy: Being part of it was simultaneously so difficult and so meaningful, and feels at the same time like a big accomplishment and yet also such a tiny drop in a giant bucket for what is needed. My main feeling seems to be thanks - thank you for letting me walk with your team and your friends, and thank you for letting me lend the support I can. The idea that maybe a few dollars that I helped raise will give women with no health insurance access to mammograms, or feed a few families when they are wanting to do anything but cook for themselves, is such an important one for me. And the hope that this foundation supporting mets research so that women like you can continue to be such amazing role models, mothers, and writers is just more than I can think or even talk about very eloquently.

Ginger: I now have an appreciation for the number 39. One of the most painful but rewarding experiences of my life. Despite my mental resolve to keep going, I kept feeling like my body was failing me--a perfect illustration for what survivors endure. Thank you to everyone who has supported us--you were all with me yesterday and today.

My 39 miles were dedicated to my mom, Betsy Elliott, who is a survivor of DCIS breast cancer (that is, ductal carcinoma in situ and caught early, thank goodness). She is recovering fully after a unilateral mastectomy in March of this year.

Now that my feet have begun to recover, I'm already considering next year's Avon Walk.

The 16 of us crossing the finish line on day 1.

Jess V.: It's amazing how many tears and thoughts that come over you as you walk this long walk. I feel so honored to have been a part of this team. Thank you, Jen, for leading us through a wonderfully rewarding weekend, yet again.

As I told [my husband] and the others who asked me how the walk went - this one was harder. I didn't train. I bought the wrong shoes (without much support). I said with confidence "I never get blisters" and got several epically huge blisters. By mile 10 on the first day I started to have significant tightness in my legs and difficulty walking with a normal stride. But it's really easy to get over that pain when you walk by a woman clearly in the process of fighting cancer. Suddenly your legs don't hurt as much and you realize how easy your pain is versus theirs.

I can't wait to do it again next year. I'll be signing up tomorrow just because I'm too wiped out to do it right now.

It was such a wonderful experience walking with you all. Looking forward to Avon Chicago!

Beth V.: You people are all so amazing, not only for participating in this amazing walk, but also with the fundraising. For a team of 16 to raise as much money as we did is incredible (obviously a testament to the smarts and savvy of our team, and especially our team leader, Jen!) As for the walk itself, I appreciated the collaborative nature of our team and how we stuck together. I didn't expect that a group our size would--especially in light of the many potty breaks--and was pleasantly surprised. Our solidarity as a team and commitment to an important cause so close to all of our hearts made this weekend particularly special for me.

Thank you all for a fun, positive, successful and memorable experience.

I look forward to seeing everyone again soon!

The kids who brought me to sobs on the trail, with a photo of their mom holding them as toddlers hanging from their capes. She died of metastatic breast cancer last year.

Kacey: My impressions from this weekend all come down to community. I was so moved by how many people came together to make this walk happen for us. I was completely blown away by the donations I received. The number on my personal page is a little off because I shared a lot of the donations I received with team members who were under the minimum a few months ago, but I think I raised a total of close to $8,000. Most of my donations were small amounts - it was a very grassroots effort! And many donors gave more than once.

When Nora and I organized our wine night fundraiser, we ended up with more silent auction prizes than we knew what to do with because businesses and friends were so generous. We were so worried that the night would be a bust and we'd end up giving away these amazing prizes. But we were shocked by how many people came out and the volume and amount of bids we received. It was truly inspiring.

The weekend of the walk, we had so many supporters. Dan and Sarah hosting us for a pre-dinner walk, Tim traveling down from MD to walk a few miles with us, my own husband trekking all over DC to find us so my kids could hold up a sign for a few minutes (and the baby could eat!), plus all the husbands behind-the-scenes who watched little ones for the entire weekend so their Moms could do this. That doesn't even include all of the strangers who stood on street corners, dressed in crazy outfits, cheered, handed out candy, high-fived, and generally kept morale up.

By mile 10 on Day 1 (just 1/4 of the way done), I really didn't think I would be able to keep going. Everything from my waist down hurt. But I thought about everyone who supported my efforts to be there and everyone who was relying on me and I just kept going. It was only two days of my life and nothing some ice and an epsom salt bath couldn't cure.

If being out there and being a part of the community that made this walk possible has in any way helped put an end breast cancer, then I'd walk it a thousand times over (perhaps after training a bit more, though?). Thanks so much for letting me be a part of this incredible team, I really do consider it my privilege to have been there.

Too many names.

Jessica D.: I was inspired to sign up for the Avon 39 in D.C. right after Jen and Team Booby and the Beast completed their 3rd walk in 2014 in San Francisco. I continue to be amazed by Jen’s strength, as well as the advancement of breast cancer treatment, and wanted to do all I could to raise money to continue research efforts in the field.

As I tend to do with any trip, event, or race (guess it’s the engineer, or now the ‘mom’ in me), I plan, make lists, check them twice, and worry about the little details. I set out on a training plan walking miles and miles around Tempe before dawn, rallied lots of support among my family, friends, and co-workers, and made sure I had all the right gear for the big weekend.

However, nothing can quite prepare you enough for how incredibly moving this event is. The support of honking car horns; the spectators providing countless high-fives, candy, baby wipes, and some tunes to put a beat in our steps; and most importantly, the bond among our team members that was solidified throughout the journey were more motivating than words can even describe. I am truly thankful for being a part of this memorable experience, and can’t wait to do it all over again! Thank you, Jen, for letting me be a part of it all!

Shelby: Every year I'm amazed by the impact this walk has on me. To say that walking alongside Jen and an incredible group of amazing women and men, for the third year in a row, is a remarkable experience feels like such an understatement. The weekend is absolutely amazing, emotional, inspiring, challenging, empowering, and rewarding as we raise money for breast cancer research and to fund access to care for those without the means. As soon as we cross the finish line, hand-in-hand with our awe-inspiring Team Captain, I look so forward to next year's walk. Thank you Jen for continuing to share your story, for inspiring so many, and for allowing us to share this incredible experience with you. I feel honored to have been a part and to have walked alongside each and every one of 2015's Team Booby and the Beast. Here's to Chicago 2016!

Gretchen: There isn't much to say that hasn't been said. I just wanted to say THANK YOU, Jen for inspiring us and for the opportunity to walk with you. Team Booby and The Beast is a powerhouse! This amazing group of men and women surrounding you is a testament to the absolutely fabulous person you are. Team, I was honored to walk with each and every one of you.

At the finish line on the National Mall.

A Book Update + Some Advice from Stephen King

So far, this month has not gone as I'd planned.

Side note, sort of: I finished the first draft of my book just before Thanksgiving. A friend and former colleague helped me move parts around so that it didn't take such drastic temporal leaps. It has a flow that I think makes sense now, thanks to her input and organizational skills. I no longer repeat the same stories four separate times, thanks to her keen eye and editing efforts.

Then on the advice of Stephen King (who's been somewhat successful at writing books), I decided I was going to let my manuscript sit, untouched, for six weeks. The idea being that when I came back to it, it would be with a fresh set of eyes. In theory, I'd be ready to cut out the parts that were unnecessary (no matter how brilliantly I thought I'd written them) or add details that would help carry the story forward or fix the parts that weren't so well-written.

My plan was to spend this month, after the clamor of the holidays had quieted down, to set to work on draft number two. I would be diligent in the new year, without the distraction of present-buying or cookie-making or company-hosting. Quinn would be back at preschool after an extended holiday break, so I'd have more free time. Or so I thought.

Then, I was hit with the worst cold I've had in at least a year, and just as I was recovering, Quinn had to have surgery. My little guy needed me. Editing my memoir would have to wait until both of us were back on our feet, back to our routines, backing away from the Tinker Toys and television overload.

And there went the first two-and-a-half weeks of my year.

So that's the update on my book. It's done, sort of, but still needs some reworking in spots. I've got a meeting with my agent this week, who, if I'm lucky, won't drop me just yet for still having not completed this project. Then I'm meeting with a friend next week who's also writing a book, hers on how writing helps us heal. (Here's further proof.) My friend and I are sitting down during my chemo infusion to exchange chapters, to read and critique and (I hope) praise each other's work. Please wish me luck.

Another friend recently wrote me that she doesn't set new year's resolutions so much as new year's goals, the idea being that an aspiration is somehow more achievable -- maybe because the idea of it is more approachable? -- than a strict resolution. If that's true, my goal of the early part of this year is to wrap up this project, perhaps tie it in twine, send it on its way, and pray my agent is able to find a publisher.

{1, 2, 3}

In the meantime (or when I'm looking for inspiration), I recently read this, just started this, and am waiting on this, which was written by my sorority sister and friend Amelia, and is available for pre-order now. Amelia's book is bound to be as clever and poignant and hilarious as her blog. Go get yourself a copy! Or let me know what books you're reading lately. We'll start a club and discuss over some wine. Because another thing Stephen King told me is: "If you want to be a writer, you must do two things above all others; read a lot and write a lot." Hey, at least I'm still finding (a teensy bit of) time to read.

Negative Space

I am not a morning person, despite how much I love to watch the sun rise. I prefer to work late. I would workout after noon every day if schedules and temperatures allowed. But even by my scale, I woke up feeling especially irritable on Monday this week. My head hurt. I hadn't gotten enough sleep. It was a holiday, so I felt like I should have been relaxed, but I just couldn't find it. I was on edge and testy, and when Quinn asked me to play with him, I practically begged him to let me read to him on the couch instead while I finished my coffee. 

Last week, I'd been chatting online with a friend of mine, Renee, another mom with metastatic breast cancer. She'd run into our friend Brigid at chemo last Tuesday. They have the same oncologist and it wasn't unusual for them to see each other at the infusion center. I wanted to know how Brigid was, how she looked. I was hoping to get out to see her at her next appointment, in two weeks.

Monday afternoon, I got this text from Renee: "My heart is broken." And I knew.

I immediately checked Facebook and the first post in my feed was from Brigid's husband, on her account, letting us all know that she passed away Monday afternoon, after eight years of living with breast cancer. He said he'd never been more proud of anyone in his life. I couldn't help but think about what I hoped Chris would never have to write on my wall.

I've been thinking and thinking about what to say about Brigid here, if anything. We weren't especially close, not in the way that I am with my oldest friends or the people I see every week. But there is an instant understanding when you meet someone who's had the same surgeries you've had, who has suffered the side effects of the drugs you're on, who knows what it's like to be bald more than once, who can commiserate about the never-ending cycle of scans and treatment and hope for a better option. Cancer, in its ugliness and brutality, creates intense bonds. I couldn't not write about Brigid. 

When I was diagnosed, she was one of the first people who gave me hope about what it means to live with metastatic breast cancer. In one of our early conversations, I asked her how she stayed so positive (the girl always had a smile on her face). She answered plainly, "I've never felt sick." I'm sure that changed over the past few months, as her cancer changed course and her treatments became more harsh, but her smile never faded.

I, on the other hand, can hardly bring myself to smile before my second cup of coffee.

{an early meeting with Brigid (center) and our friend Patti}

***

In her book Tiny Beautiful Things: Advice on Love and Life from Dear Sugar, Cheryl Strayed (of Wild fame) wrote: 

One of the basic principles of every single art form has to do not with what's there--the music, the words, the movement, the dialogue, the paint--but with what isn't. In the visual arts it's called the "negative space"--the blank parts around and between objects, which is, of course, every bit as crucial as the objects themselves. The negative space allows us to see the nonnegative space in all its glory and gloom, its color and mystery and light. What isn't there gives what's there meaning. Imagine that.

In Brigid's absence is a void, a negative space that reminds us of the "color and mystery and light" of the life she led. Of the brilliance that she shone on everyone she met. This isn't a perfect analogy, of course, because we are not better with her gone, but I am better for having known her. She did give what's here meaning. Brigid was small, only 4'11", so maybe it's fitting that words from this book resonated with me when I learned she'd died. Brigid was herself a tiny beautiful thing. 

And We Walked . . .

We did something a little different this year: we formed an official team for fundraising, Team Booby and the Beast. It was so official, we had shirts made.

My team included my best friend in the world, Alana, who reminded me we've been friends for going on twenty years; Shelby, another amazing woman I've known half my life; and Ginelle, who's married to my husband's best friend from childhood.

The four of us raised an impressive $16,065.29. Yep, that's me tooting our own horn. What can I say? I'm proud of us. Thank you to all our generous supporters for making this happen. The San Francisco walk alone raised $4 million this year for research and support services, including chemo and diagnostic tests for those who can't afford it. 

I want you to know a little more about these teammates of mine, these women who come out year after year to wreck their feet with me and beg their networks for donations so that one day, we can say we helped end this disease.

Alana came to visit me when I had my last round of chemo #1, and got my news that Christmas that my first post-chemo scan was squeaky clean. She is the only person who's been with me to the dingy part of the hospital where I used to have my PET scans (lucky her). On the walk, Alana is the one who will suggest jogging for a bit to change up the muscles you're using (and the thing is, it actually works). She spotted the girls handing out mimosas at mile 24, and made sure we all stopped to grab a cup. When we realized the buses to the start left at 5 a.m. on day one, she suggested we Uber it to the start instead, which meant we got to sleep in until 5:30. Also, she designed our team shirts. In short, she makes my life easier and more fun and far more beautiful.

Shelby is a friend from college, one of the women who cut off her hair to make a wig for me. She is also a researcher at Genentech, and was the first person who made me feel at all better about the fact that I had Stage 4 breast cancer. She talked to me about Herceptin and gave me confidence that I could do this. Shelby is as emotional as I am, and wept with me as we crossed the finish line, the four of us holding hands. We were saved by the guy handing out free It's-its, a San Francisco ice cream cookie treat I'd never experienced but now crave daily. Shelby still reminds me that I'm doing this thing, this beating cancer thing, and almost more than anyone she makes me feel okay about my diagnosis. I'll write more on Shelby and Genentech in another post soon.

Ginelle hardly knew me three years ago, beyond the fact that I'd married her husband's best friend, but when I was diagnosed she left her family to come visit and cook meals for our family. Last fall, she treated me to a weekend at Canyon Ranch, which has to be the most relaxing place on earth. I'm pretty sure we'd have been friends regardless, but cancer sped up that process. Some people run away from the burning building; Ginelle is the type to run straight into it carrying ice water and oxygen masks.

Ginelle is so prepared, we dubbed her the team girl scout. She kept us supplied with electrolyte powders and gummies, bandaids, body glide to prevent blisters, mole skin when we got them anyway, scissors, foam rollers, Advil, Epsom salts, and things we'd never even heard of, like silicone toe caps that I probably should have used, given the state of my toenails right now. She kept us on schedule in the mornings and ahead of the pack so that we were even the first to use some of the port-a-potties on day two.

All four of us, our feet hurt. We had blisters and bruised toenails, sore bunions and throbbing arches. We were chafed where our sports bras rubbed too tightly. Our hips and knees ached, especially walking down those steep Marin County hills. We were so exhausted we were delirious and punch drunk.

Which may explain why we immediately signed up for another year. We'll be going back to my old stomping grounds and walking in DC the first weekend of May, 2015. We'd love it if you'd join us, too.

The Road Less Traveled

{photo credit}

At chemo yesterday, I got to chatting with the woman sitting in the chair next to mine. She was petite, with perfectly manicured nails (in contrast to my big toes that are holding on to the last of a pedicure from more than a month ago.) She apologized for her raspy voice, said it was probably the radiation to her throat and chest. I asked whether she had throat cancer.

"No -- lung cancer," she told me. "My gym just named me fitness woman of the month in January, my husband had surgery, and then I had this persistent cough that they told me was pneumonia. It was not pneumonia. I mean, I was going to spinning classes and walking eighteen rounds of golf and then this."

I asked if they'd caught it early -- cancer small talk.

"No, it's Stage 4," she said meekly.

"Mine was, too," I told her. "From the beginning. That was almost three years ago -- breast cancer."

She was at the infusion center for her first chemo, but had been too dehydrated to receive it, so was just getting fluids. She confessed she wasn't sure if she'd continue to fight the cancer, she was so scared at the prospect of chemo, although she admitted she'd thought radiation had been a piece of cake.

"I'm lucky," she went on. "I've had a full life. I'm seventy-six."

I just about fell out of my chair. This woman did not look like a 76-year-old. She looked like the fitness woman of the month, with porcelain skin and a cute blonde pixie cut.

"I was always so healthy, had my tonsils out when I was five, but that's been it," she went on, expressing to me what I've come to know far too well: that cancer doesn't always care whether you're otherwise healthy. That cells mutate, go rogue, form tumors for reasons we don't fully understand.

We spent the next couple of hours chatting intermittently. My friend Sandi came to sit with me and encouraged this woman -- she introduced herself as Grandma Sue ("That's my mom's name! She's coming to visit and take care of me this week," I shared) -- to go forward with chemo. We both did.

But it got me thinking about what I would do if I were forty years older than I am now. If I didn't have Quinn and Chris and my (relative) youth to want to stick around for. Would I still put up this much of a fight? Would I feel lucky at the life I'd lived, and be ready to let go, to give up this life? The concept scares the daylight out of me, so I didn't pursue that line of conversation with Sue.

Instead, I did the only thing that I know how to do: gave her a vote of confidence that if she's healthy otherwise, she'll be able to handle chemo. Promised her that the meds they give to combat side effects are truly remarkable. We told her to watch a marathon of "Downton Abbey" when the fatigue lays her flat on the couch.

Even as I was talking, part of me felt like I was chickening out, taking the easy, familiar route rather than dive into why Sue felt it would be okay if she stopped getting treatment. I wasn't comfortable talking about accepting death. Does that part come after a certain amount of time living in cancer land? (P.S. I would not make for a good hospice volunteer.)

At the end of the day, Sue's 82-year-old, equally fit husband came to pick her up. She introduced Sandi and me as the ones who'd been giving her a shot of courage, and I was flattered. Then her husband shook my hand and said, "Thank you."

Cancer Has Made Me Socially Awkward

It has been six years since I moved to Arizona, after spending most of my twenties in Washington, DC. DC is a vibrant, transient city, full of young people eager to make a difference, people who care about current events and issues affecting our country; it's a city full of history, culture, and possibilities. (So...the opposite of Phoenix--I joke! Sort of!) I met my husband in DC, so I'm a little partial to that city.

And the thing about a city so densely populated, so full of youth and energy and drive, is that it was easy to meet people. Chris jokes that my job as a lobbyist was primarily about happy hours, and he's not totally wrong. Everyone wanted to network, so one new acquaintance led to ten others. And then some of those acquaintances became some of my best friends. Or maybe it was just about being in my twenties? 

{photo credit}

Our life is decidedly different now, and it would be easy to blame our relative lack of social interactions on becoming parents or getting diagnosed with breast cancer. In fact, having Quinn has probably improved our social life, as we meet parents from Quinn's preschool and get invited to toddler birthday parties (hey, it's an invitation and it usually involves cake). 

I am not the first person to lament the culture shock that comes with a move to Arizona from just about anywhere else. It quickly becomes a topic of conversation at most events we do attend. The question boils down to: why is it so hard to make connections here? 

Part of it is the sprawl, as Phoenix stretches for seemingly hundreds of miles in every direction. I met a couple of women at Quinn's swim school who seemed really cool, then found out they lived in "the Avenues," meaning west Phoenix, meaning a good forty-five minutes from our house just east of central Phoenix, so we didn't even bother to exchange numbers. Friendships here are often geographically unrealistic, and so they don't get off the ground. 

Part of it is the heat, as everyone goes into hibernation (or leaves town) during the unbearable summers here. We hardly even saw our next-door neighbors last summer because we all move from air-conditioned house to air-conditioned car (parked in a garage, if you're lucky) to air-conditioned store/movie theater/office. 115 degrees is too hot for small talk. 

Part of it is the culture (or lack thereof). It exists here, but you have to seek it out and even then the results can be disappointing (see: food and wine festival we went to a few years ago that was essentially an excuse to wear minimal clothing (or show off surgically-enhanced assets) and drink at a park during the day. Five weeks post-partum, this was not the culture I'd been looking for). 

But mostly--I think--it's the sprawl and the heat. Friendships here take an amount of effort and planning that ones in DC never required. 

DC is full of politicians and has terrible parking, though, so it's not perfect.

And I didn't mean to turn this into a post about how hard it is to connect with people in Phoenix. After six years, I have formed some really outstanding friendships with people I've met through Chris's job at ASU and my yoga community and Quinn's school. I have other moms I can call on for help when I'm feeling overwhelmed or friends I can invite over for a (relatively) impromptu dinner. Our social life is quite different than it was ten years ago, but I'm okay with that. 

What I want to talk about is what happens when I do meet new people here, and this is a direct consequence of cancer: I never know when or how it's appropriate to share my health history with others. I feel awkward and insecure, which is not typical for me. I went to three different high schools. I know what it's like to be the new girl, know how to make small talk with strangers. Or at least I did. Now I can be found milling awkwardly over the guacamole and chips while others mingle. I can't be the only woman living with Stage 4 cancer who has this problem, right?

{photo credit}

A family in our neighborhood hosted a block party over the weekend and I met a couple of new faces. One woman complimented me on my haircut. Do I mention cancer? I wondered. Ultimately, I did, saying this was grow-out from chemo and I'm not quite sure what to do with it in this in-between phase. "Oh, I'm so glad you're a survivor!" she responded. And then I wondered whether I should explain further--that, actually, I'm still in treatment, and I'm not completely comfortable with that word. But I didn't. I just smiled and said, "Yeah, me too." A version of this exchange happens pretty frequently. More and more, as my hair gets longer, I'm less inclined to mention cancer, but should I? Do I then become that weird cancer woman who doesn't talk about anything else? Am I already her?

Another neighbor standing nearby chimed in: "Oh, I just did the 3-day walk! It was so inspiring!" See? Cancer makes everyone awkward. I did resist the urge to get on my soap box about the evil empire Komen. 

Another couple of women at the potluck had seven children under the age of seven between them, and asked the inevitable question of whether we were going to have more. What should I say? I debated saying I couldn't get pregnant because of health issues, but I didn't. I just said we had our hands full with one for now. I felt like I was admitting defeat to these super producers of little humans, like I am a lesser being because I don't know if I could handle more kids and here they were with three or four each. But I don't want every conversation to be about cancer.

{photo credit}

Yet another woman asked whether I worked and whether Quinn was in preschool. No and yes were my answers. "He's in school a couple days a week because I have some health issues and need the extra help so I can make it to all my doctors appointments," I said. Or something like that. I skirted the issue, which felt disingenuous. Should I have just talked about how good I think it is for his social development? Probably.

I'd love to hear your thoughts on this. Because lately, cancer has been making me feel awkward, insecure, and insincere. All good qualities for sparking friendships, right? So. . . short of becoming more of a recluse, how do I navigate this weird space I'm in where I look mostly healthy but have treatments and am on disability and still live with this disease all the damn time? 

Hey, at least I don't have to worry about dating.