A Decade

Does this thing still work? Do people still read blogs? 

God knows people are still being diagnosed with cancer. 

I know it has been a minute. There was (is) a pandemic. We had a toddler, now preschooler. I started a business. I wasn't sure our marriage would survive, and I'm only being a little facetious. We had to work through some things while a 3yo, albeit a cute one, threw herself at us with the force of a small bull, dumped over her full cereal bowls, dropped chicken nuggets in our drinks, bit her brother (but promised not to cut him because she "likes him"), and screamed with a volume that should put her in the running for starring in horror movies soon. 

She's adorable, really. But it has not been an easy 17 months, and I say that as someone who has been through a bit.

How have you all been? I've missed you. 

So why now? Why show up this Thursday afternoon in the middle of August to say hi? 

This morning, I was skimming through a text chain amongst some mom friends of mine just after I dropped Noelle off at preschool. One mom's 3rd-grader is being bullied about her weight. In third grade. Her freaking weight, you guys. 

This message from another friend in the group had my eyes burning and tears on my cheeks before I'd even left the school grounds: 

"Being a girl is hard and I wish younger girls learned earlier to lift each other instead of tearing each other down, it makes for such a better existence." 

I thought of how grateful I am for my college friends who cut off their hair to surprise me with a wig when I started my second course of chemo. How much I appreciate other moms who will tell me when my kid is out of line or doing something that should make us all proud, women who join me whether I need a glass of wine or a long walk in the morning, and who show up for each other week after week because it takes a village. I can't imagine my life without my village of women.

I would not have gotten through the last decade without them. The ones who sent me notes to say, "You should talk to my cousin who was diagnosed while pregnant," or "Cancer is the worst club with the best people," or "I love you. One moment at a time. Just breathe." 

Breathe. Because you can today, and sometimes shit goes haywire and breathing isn't easy. Or your friend's lungs fill up with cancer-riddled fluid and breathing is nearly impossible.

Today marks TEN YEARS since I was diagnosed. A decade since I drove the two miles home from the radiologist's office in a fog of fear, like the hands of the grim reaper himself were wrapped around my throat and closing off my air supply. I came home to my infant son and my husband, who was standing in our small kitchen. I told him that I had cancer. "I don't fucking believe we're having this conversation." And I felt disappointed, devastated, crushed at having to share that news with him of all people because he'd lost his dad to pancreatic cancer two years earlier. 

Time is a bittersweet pill. I celebrate being here. As I've rocked her at night, I have probably asked my daughter a hundred times, "How are you here?" The miracle of it astounds me. My husband jokes she is the only egg that could have survived. She is tenacious, feisty, combative, defiant, and 110% sure of herself. 

How am I here? I didn't think I would be. And I grieve. My heart still hurts for my friends who are gone. Brigid. Renee. April. Emily. Andrea. Holly. Adrienne. Beth. Colleen. Katherine. Jody. Cristin. Carolyn. Michele. Sarah. Mandi. Anna. Chiara. Rebecca. Roberta. Joanna. Too many to name.

So here's what I've learned in the last ten years. People are mostly good, and mostly want to help. I still believe that, even if we've seen a lot of selfishness the last year. Women are badasses, and I feel lucky to be one and have the opportunity to raise one. You have to be your own best advocate. Our medical system is in disarray, and doesn't work well for those who need it most. Stand up for yourself, and speak up when something doesn't feel right. Even when it's scary. Especially when it's scary. Sometimes you have to be as loud as a 3-year-old to get what you need in this world. 

I think this is a good stopping point for my blog. Ten is a nice round number. Please keep in touch. Find me on Facebook or Instagram or even Twitter occasionally. Send me a text or email. I love you all, and you have sustained me in my darkest hours. I mean it.

Who knows? Maybe I'll finally finish that book of mine. 

XO

Jen

A Beacon of Hope on the Navajo Nation

This post was written in partnership with AstraZeneca. All opinions are my own.

2020 might be a mess of a year, but it is showing us some important truths about our world. I have talked a time or two about disparities in healthcare access and outcomes. Black women, for example, are 42% more likely to die from breast cancer than white women, even though incidence rates are mostly similar. These disparities are not new, but to the extent they weren’t widely known, they have become abundantly clear this year as we face a pandemic that has hit disadvantaged communities especially hard. 

When we think of disadvantaged communities, though many Americans don’t immediately think of Native Americans. Here’s why we should.

The Navajo is the largest reservation in the United States, about the size of West Virginia, extending from northern Arizona to southern Utah, and into Colorado and New Mexico. About 250,000 people live on the reservation. More than 50% of Navajo families live below the poverty line, up to 40% of households do not have running water (exacerbating the Covid-19 crisis), many Navajo live with several generations under one roof, and hundreds of miles of unpaved roads mean that it can take hours to get to medical facilities in larger population centers like Flagstaff or Phoenix. 
 
Over the weekend, the Nation instituted another lockdown because of “uncontrolled spread” of coronavirus on Tribal lands. Limited healthcare facilities make treatment options scarce when Covid does strike. In a six-part series on the links between racism and Covid-19, USA TODAY highlighted these disparities. “On the Navajo Nation, inadequate resources have resulted in widespread water poverty, food insecurity and high rates of illness. These daily realities were devastating long before the pandemic, but they’ve also helped fuel a high COVID-19 death rate.”
 
I was at a conference for cancer advocates in January (back when conferences were still happening), at which a woman from the Navajo nation spoke about how living conditions, poverty, pollution in the form of abandoned uranium mines, and distance to treatment facilities negatively affect cancer outcomes for Native Americans. The data backs this up. While Native American women are less likely than whites to be diagnosed with breast cancer, other cancers are on the rise – and frequently caught in later stages when fewer treatment options are available and the diagnosis is too often terminal.
 
Last week, I had a conversation with Lynette Bonar about the work she’s doing to make significant improvements for the Navajo community. She is the CEO of the Tuba City Regional Health Care Corporation (TCRHCC), a nonprofit organization that provides health care in the western part of the Navajo Nation in Arizona. Last year, Bonar’s organization opened the first cancer center within the boundaries of a Native American reservation. Not just the first on Navajo lands, but on any reservation in this country. The new oncology and hematology clinic, called the Specialty Care Center, received its first patient on May 14, 2019, and began giving patients chemotherapy infusions in June 2019. 

Bonar explained the years-long process of opening the Care Center’s doors. A nurse by training, Bonar saw firsthand the toll a lack of facilities was taking on her patients and neighbors. One woman didn’t want to burden her kids to drive her the 150 miles to Flagstaff, fearing they’d lose their new jobs if they took too much time off. Instead, she opted to forego treatment. People with very treatable cancers were not seeking treatment because of the barriers to care. Many diagnoses were happening in the Emergency Department, when the cancer had already spread and was causing physical symptoms. Bonar wanted to change that. 
 
In 2013, she started talking to two oncologists/hematologists, and asked them, “If I build this, will you come work here?” like something out of “Field of Dreams”. They said yes. The husband-and-wife team are not Navajo, but are dedicated to treating Native Americans. 
 
Working with local nonprofits and using the Tribe’s own capital, Bonar was able to raise the $2 million necessary to build the state-of-the-art facility. But she also had to lobby regulators to change the payment models for reimbursements to include cancer care at an Indian Health Services facility, something that wasn’t covered before. 
 
In the last year, Bonar estimates the Specialty Care Clinic has served more than 1200 patients, and their outcomes are far better than what they used to be. Patients can receive screening, chemotherapy, and other infusions at the Tuba City facility. For radiation and other specialty services, patients still have to travel to a larger medical center like Phoenix (about 250 miles away).
 
For her relentless efforts to level the playing field and erase some of the disparities that exist in this community, Lynette Bonar was recently awarded a Catalyst for Change Award, part of the Cancer Community (C2) Awards, created by AstraZeneca and Scientific American. The awards aim to honor the unsung heroes of cancer care, including healthcare professionals, researchers, caregivers, advocates, educators, and any individual or organization offering relief in extraordinarily difficult times. 
 
Bonar was chosen as the winner of the Catalyst for Change Award, for working to significantly improve the ability of underserved populations to receive high-quality cancer care. Not only did Bonar establish the first cancer facility on an American Indian Reservation, but she is also the first Navajo woman to helm a Navajo healthcare system.
 
I asked her what she would want her message to others to be, what the world should learn from her story. She said: “People don’t realize there are so many health disparities. What we have to go through to get to an equal playing field for healthcare is so much. COVID-19 has highlighted our struggles. With cancer, we’re not the only ones facing this. There are other rural communities without access to treatment. The United States needs to work to improve this.”

When Checking-In is No Longer an Option

Last week, Theresa's Research and the Mayo Clinic held their sixth annual Metastatic Breast Cancer Conference. It was here in Scottsdale, so I lined up childcare for two days (though I keep wishing conferences would add it to their offerings) and drove down the street to see what was new in research and give hugs to a few of my friends -- Susan and Kelly and Julia and Christine and Jersi and Janice and Kate, for starters.

I first met Kate five years ago when I went to DC for a friend's wedding and to get my nipples tattooed by Vinnie. It was springtime, and pouring down rain. We met at the Museum of Natural History because I couldn't figure out where else to go with my 3-year-old son in a downpour. A million other people had the same idea, but Kate patiently sat with us in the cafe as Quinn ate gummy worms and we talked about my metastatic disease and what it had been like to see Vinnie. At the time, Kate was an early-stage survivor but always a strong advocate for research. She'd been originally diagnosed when she was 25.

Last year, she was diagnosed with mets. Now, she (and thousands just like her) is anxious for additional treatment options.

Kate and me in DC, 2014

"I'm so glad you're okay," she told me between sessions as we sat next to each other in the chilly conference room on Friday.

"Thanks," I responded. "I want you to be, too."

"I won't be," she said, and we both teared up and looked away from each other.

Kate was in town with her dad, and I spent a while talking to him about his frustration and anger. We need to do more, and better, for the nearly 42,000 women and 500 men who are still dying of this disease every year.

Because we still don't have enough options, and so many of the sessions we heard about were on cellular pathways in mouse models -- still likely a decade away from clinical trials.

There was one session on outliers, those who live more than a decade with metastatic disease. People like my friend Dikla, who just passed 17 years since her MBC diagnosis. Not everyone diagnosed with MBC will die from it, and researchers are still trying to find out why. What makes those people unique, while others are failed by treatment after treatment?

On the first day, I met an older woman with a strong New York accent. She told me about her son with cerebral palsy, and how he's the most successful of her kids, how she must've done something right. She complained about her doctor's recommendation that she lose some weight as she snacked on a bag of conference-issue potato chips. She said 'fuck' a lot, and I liked her right off the bat.

Friday morning, I asked her whether she went by Liz or Elizabeth. "It's Nicole," she corrected, and we laughed about the lingering effects of chemobrain. Later, as we were saying goodbye that afternoon, she said, "You know, I really don't know what to say to people who tilt their heads -- you know, like this," she demonstrated with an exaggerated ear-to-shoulder move, "and want to know how I'm doing. 'No, how are you REALLY doing?'" she imitated, clearly annoyed by the question, or the pity it evoked, or both.

We wondered whether people really want to hear all the side effects that cancer patients, especially metastatic patients, face on a daily basis. Do well-meaning friends really want to know how fatigued she is feeling? That her nails are ridged (as are mine, years later) because the chemo is so harsh? Or should she just respond, "I'm here today, thanks for asking," and keep it brief but polite?

***

On Sunday evening, as I lay on the couch next to Quinn, who was watching an NFL game and planning for his fantasy football league, I opened Facebook on my phone and gasped audibly. Quinn turned to me and asked what was wrong. I stammered, not wanting to share with him, but I couldn't stop the tears. "Mom, what is it? What happened?" I took a deep breath and sighed heavily. "My friend died," I admitted. I got up, walked into our kitchen, put my head in my hands, and sobbed.

The news floored me, and shook much of my online community. Just a couple of weeks ago, Berta had posted she was starting a new combination chemo. I didn't know what else to say, so I told her I loved her. I hadn't seen any updates since then, but I also hadn't checked in. I hadn't asked how she was doing because I figured the daily was probably shit on new chemo, but I also didn't think she was doing so bad that she'd be gone this quickly.

News in cancerland can change so quickly. We can anticipate death for years, but when it happens, it is sudden. We can make the choice not to check in and then checking in is no longer an option.

I met Roberta online years ago, and we became fast friends. We were both youngish moms living with cancer and trying to make it to the next milestone. 

A couple of years ago, just after my sarcoidosis announcement, I got to meet Berta in person at the YSC conference in Oakland. We hugged tight and she asked me to dinner with the mets sisters. We all spent the night laughing about our "boobs," for some the perils of dating, for others raising kids, getting away for girls' time, and the deliciousness of Justin cabernet. I bought her a glass, and Berta joked, "That Justin, I just love him." God, she was funny.  

8 of the 10 women in this photo have or had metastatic breast cancer. 2 are now gone.

Jessica, April, Roberta, and me

I am frustrated, and angry that my friends don't have more options yet, and so very sad for their loved ones. Roberta leaves behind her family, including her son, who just started middle school, and twin daughters who began first grade this month.

I don't know what else to say, except: check in on your friends often, without pity, because you really do want to hear about their chemobrain and lack of appetite and how they're talking to their kids about it all. And please donate to METAvivor to help speed research along.

The Upside of Down

Sometimes the world feels upside down. It can be scary, but a friend once told me scary isn't always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.

Photo by Quinn. My holding a handstand, like me, is a work in progress.

My world has certainly felt upended -- over the last few years since my diagnosis changed, yes, but also very acutely over the past few months. Is it the alignment of the planets? A midlife unraveling a la Brené Brown?

'Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.' -- Brené Brown

I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they're crumbling, and the question staring me in the face is what is it that you're going to DO with your second chance? How are you going to SERVE? As I begin to re-engage with the advocacy community, I have felt a yearning for something...more. A greater impact and deeper meaning to the work I do, which, let's face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don't get me wrong. But I am exploring options for shifting the balance outward a smidge.

Balance doesn't always come easily. Case in point -->

I can dissect all I'm doing wrong here as far as form goes, but at least I'm laughing.

I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was exploring EMDR, a type of trauma therapy, and I promised to write about it...four months ago.

The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it's time to wrap up. I keep feeling like we're just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is so damn hard sometimes. DM me if you know the answer to that.

In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don't know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.

In an effort to augment my therapy appointments, and in light of Quinn's existential concerns of late, I've been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.

This weekend, the yoga instructor, Beau, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is they were both going through the same hardship but neither one knew it because we don't always open up to the people around us. Then Beau talked about a video circulating in the CrossFit community about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how sharing can lead to that. I've seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.

Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude.  I haven't talked about my mental health much here because so much of my recovery is still in process -- but then I'm realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won't be as far away as I think. If I fall, I will stand up again. You guys will help me.

Take That Win

Last week, Noelle and I toured a preschool.

Now that Quinn's started school again, she's ready to follow.

I should clarify: I know this preschool well. Quinn went there three days a week for two and a half years. We still meet up regularly for Taco Tuesdays -- or lately, Brat Haus Tuesdays -- with the families we met there. The school was a magical sanctuary for Quinn (and me) when I was no longer working but still sick and lethargic from chemo.

Four years ago yesterday -- thanks, Facebook memories

But I wanted to see what Noelle might think. She is almost two -- how in the name of all things holy did that happen? -- and certainly ready for more interactions with people her own size. She picked out her favorite pair of shoes for the trip -- pink cowgirl boots handed down from a friend's daughter.

Walking around the school, seeing the now small-looking playground and the familiar, eclectic classrooms filled with reading nooks and wooden play kitchens, terrariums housing lizards and trays filled with dried beans, pictures of current students and their families on the walls, I stopped in my tracks more than once to catch my breath. I remembered Quinn exploring here. Outside, swinging on those little swings, climbing that upside-down colander / spider web jungle gym and how it terrified me the first time I saw it. Learning to swing on the monkey bars, discovering what happens when ice castles melt and reveal treasures frozen inside, running to jump into my arms at the end of the day, muddy and barefoot and excited with his whole body to tell me about feeding lettuce to the chickens.

A full movie montage ran through my head and I choked away tears.

I hadn't expected that onslaught. As I mentioned, I've been a little emotionally raw lately.

Time is wild. I distinctly remember dropping Quinn off when he was two and a half and sobbing in my car afterward, then writing about how my love would always be with him, while I wondered whether he'd remember me. We ran into one of his early teachers at Target the other day, and she gave me a big hug. When we left, Quinn asked me who she was and I felt a pang in my heart that he didn't remember her. That he might not have remembered me.

Today, it has been eight years since I was diagnosed with breast cancer. 

And it still boggles my mind how time twists and turns and seems to fold in on itself. How I can still feel the tendrils of fear that crawled up my neck after I heard the words, "This is cancer," and I felt frozen, like time had stopped. How eight years can pass in a blink, but August in Phoenix seems to crawl and 110+ degree temps seem to hang on for eternity. How grief can come in waves -- over lost body parts, lost friends, a lost sense of security about what it means to occupy space in this world. They say time heals everything, but I'm not sure that's true.

Stay with me. I don't mean to be grim.

Recently, I was talking with a friend about grief and the idea that it may always be in your life after cancer (or any other loss), but that over time, grief does not sit alone in that space. It doesn't disappear so much as move to the side to allow room for other experiences. Eventually, it is no longer the heaviest tome on the shelf.

I saw this post over the weekend and it resonates so strongly today.

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Take every win!! You don’t really lose when you learn ❤️

A post shared by Mantra Wellness Magazine (@mantramagazine) on Aug 17, 2019 at 9:54am PDT

Eight years, and not a single day has gone by that I haven't thought of cancer. But there is room for more than just my grief now. There is room for pink cowboy boots and a little girl who has no fear of anything in this world. For new beginnings that I get to be here to witness. I'll take that win.

Anxious as a Mother

The other night, Quinn came home from a monthly dinner with his preschool friends and their families, visibly upset, tears pooling in his enormous blue eyes. I pulled him in for a hug and asked what was wrong.

I’d left dinner early to get Noelle to bed, and wondered if I’d missed an incident. As soon as his head was against my chest – when did he get so tall? – his body shook in sobs.

“Oh, buddy, what is it?” I asked. 

“I just don’t want people to keep dying,” he said. 

I racked my brain. Who had died? Had we talked about death recently? We’d just returned from a nine-day trip to Seattle to visit my best friend and her family. Her daughter, my 14-year-old god-daughter, was diagnosed with melanoma in May. That is a whole other post because FOURTEEN ARE YOU KIDDING ME, but two surgeries later and doctors have declared her cancer-free. So we’d talked a little about cancer -- it seems we always talk a little about cancer -- but not about death.

My big-hearted boy

“What brought this up?” I asked Quinn. 

“I’ve been thinking about it since that magazine I read in Seattle,” he said.

What magazine? I wondered. I still don’t know. 

He could see I still looked puzzled. “It was a medical one about people donating their organs, and I just wish people didn’t have to die. I want them to drink from the cup in Indiana Jones.” 

“Remind me what happened in Indiana Jones?” I said. I’d been chatting with Alana on her deck for half the movie, watching the late summer sunset while he’d watched the movie with his cousins. 

Movie night

“There are several cups, and lots of them are deadly poison, but one is a potion that lets you live forever," he explained, his eyes lighting up. "Why can’t we find that and give it to everyone we know, and the people we don’t know, too, so no one else has to die?”

“I don’t know, bud,” I said. “We haven’t figured out how to do that, yet. But hopefully it’s not something we need to worry about for a long, long time," I tried to put an optimistic spin on it, even as I wondered whether I caused this. Is it because he sees me upset about losing friends to cancer? Is it because I had cancer, and his grandpa died of cancer before he was born? Is it because I have other anxieties and fears I'm working through as we speak? Is it just a normal age-appropriate fear that has nothing to do with me? 

And then he surprised me. “I wish I could talk to God about it,” he said.

We are not a particularly religious family. To put it lightly. Chris and I were both raised Catholic, but have stepped away from the church – and any organized religion, really – at different points in our lives. My leaving came more recently, a disillusionment after my cancer diagnosis that I haven't quite figured out how to reconcile.

I don't think I got better because I prayed harder, but I still value the power of prayer. I also respect that millions of people find solace in their churches and church communities. If my son needed this, I would support him.

In parenting, I sometimes have to observe silently and allow my kids to discover their own particular beliefs about how the world works. My job is to support them in a safe, loving, accepting environment as they make sense of this universe in their developing brains. 

So I responded, “Well, you can talk to God, if you want."

"I can?" he asked, like I'd just shown him how to time travel.

"Of course," I answered. "He may not answer back, but we can talk to him. Would that help, do you think? Should we pray?”

“Mmmhmmm,” he answered, and suddenly he seemed so much younger to me than the big kid who just started third grade. 

Of course he needs something external to give him hope and promise that all his worries might be okay, I thought. I don't always have those skills as an adult, and I go to intense therapy every other week. 

I tried to remember how to pray. 

Now I lay me down to sleep. No, too morbid. I asked Chris if he could remember the non-terrifying version of that one. “Nope, that’s all I knew,” he said. 

Ok, The Lord’s Prayer, then. “I used to start with something like this,” I said to Quinn, “something I knew by heart and could repeat every night.” And we went through it, line by line, a matter of rote memorization to me, unfamiliar to him. We finished and he asked a lot of questions about forgiving trespasses and the meaning of temptation.

Am I doing my kids a great disservice by not taking them to church? Why is being an adult so tough?

On Father’s Day, I’d taken both kids to a Mormon Church service. Chris was in Tanzania, and Quinn had requested to go to church where a couple of his friends go. Arrangements were made, we dressed up in our Sunday finest, and listened to the service about a father’s love for his family. Quinn’s friend’s dad gave the sermon, and teared up as he spoke about his dad always being ready to play ball with him, even when he was still in his work clothes and it was still 100 degrees outside. He’d roll up his sleeves and they’d head to the backyard. Such a simple act of love. I thought of all the ways dads show their love, of my own dad, and I wondered if Quinn was absorbing this or just happy to be sitting with his friends eating peanut M&Ms. 

Back to our praying. I recommended that he start with something easy to remember, and then go through what he’s grateful for. “It can be really helpful to think of all the things you’re thankful for. It always makes me feel better,” I explained.

“Everything,” he started. Oh, this boy. My heart. His enormous one. “I’m grateful for my family and friends, for Noelle, for food, our house, clothes, school…”

“For your powerful brain that lets you learn,” I added. “I’m thankful for you,” I said. “And my health.” I was holding him, lying next to him on his bed, our heads resting on stuffed animals.

“I’m thankful for our cars, for our pets…” 

“Yep,” I said. “And then from there, you may want to ask God about what it is that’s bothering you, or what it is you want. When I was little, I would ask God to protect my family, keep soldiers safe and bring them home, make sure children around the world have food, that kind of thing.”

“But what about why we came in here?” he asked. “I want to ask God to stop people from dying.”

Oy.

Our conversations about this have continued for several days now. We've talked about how to cope with our fears, even when we know they won't go away completely. How to use deep breaths and meditation to make the tightness in our chests feel less constricting. We've talked about how I go to therapy, and why that helps.

About how I try to give back to my community in the cancer world to honor those who have died. How Chris aims to be a good dad to keep the memory of his parents alive.

We've talked about how everyone dies, so that what's important is making this life count, and remembering that we are here today.

I've promised him that it is always worth it to love so big, even if it means occasionally losing big, too. To not let his fear shut down his willingness to open his heart.

We've talked about the importance of movement and laughter and, yes, prayer. We've journaled together, written a short story about overcoming fears and finding courage, and have tried dance parties in our kitchen.

But he is just like me in this way. We feel deeply. His empathy knows no limits, as far as I can tell. I only hope we can work through his anxiety a little earlier in life than I started figuring out how to approach mine.

Oof, parenting is exhausting and all-consuming sometimes. (All the time.) AND I HAVEN'T EVEN MENTIONED THE TODDLER.

On Men's Health for Father's Day

June is Men’s Health Month, and this week marks Men’s Health Week, the purpose of which “is to heighten the awareness of preventable health problems and encourage early detection and treatment of disease among men and boys. This week gives health care providers, public policy makers, the media, and individuals an opportunity to encourage men and boys to seek regular medical advice and early treatment for disease and injury.” 

I posted earlier this week on Instagram about my three brothers, and how much the men (and one blue-eyed boy) in my life mean to me. Are you talking to the men in your life about their health? If not, here's a gentle nudge.

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Here I am with my three brothers (and my mom), in late 2007 at my youngest brother’s wedding. ❤️ The men in my life are super important to me, and it started with these generous, loving, stand-up guys (and my dad, who I’ll get to later this week). I’ve talked a lot about my health over the years, but this Men’s Health Month, I thought I’d remind you to talk to the amazing men in your life about THEIR health and remind them to seek help when something doesn’t feel right. Stay healthy, my brothers. 💙#menshealthmonth #menshealthweek #brothers #onlygirl #wedding

A post shared by Jen Campisano (@jencampisano) on Jun 11, 2019 at 7:32pm PDT

So given the theme of this month/week, it seems fitting both that this week culminates in Father's Day and that today is my dad's LAST radiation treatment for prostate cancer. Whooot-whoot! Dad, I know you're exhausted in a full-body, cement-in-your-bones kind of way, but you did it. You've crossed this finish line, and I'm so thankful. I'm particularly appreciative that you see your doctors for regular check-ups and then follow through when something isn't right. 

To back up a bit, in mid-March, I got a call from my dad. “I have news. I have prostate cancer,” he told me. This isn't the first time my dad has called to tell me he has cancer. And I am conditioned to think worst-case-scenario when I hear the word cancer, but he assured me his doctors considered this very treatable. Still. What do they know? I am a skeptic about medical certainty nowadays.

After losing Chris's dad to pancreatic cancer in 2009, I also knew prostate cancer has a better prognosis. But still. Cancer is cancer and fear is fear.

Four generations, circa 2013

In April, I went to the HealtheVoices conference and talked about my dad's health to a few prostate cancer survivors. Even if my dad wasn't fully comfortable seeking out support from strangers, I knew these men from past conferences and needed my own support network. 

Somehow, having been through breast cancer and bared my deepest fears online already, it seems perfectly acceptable to me to talk to others about the health of my dad's prostate. Because at their core, these conversations were about my fears for him. Would he be okay? What are the chances of recurrence? Would radiation be enough? Would he need hormone replacement therapy?

And this is the beauty of connecting with others who've walked in those shoes. Of facing our fears and seeing them grow smaller as we speak. 

These are the men who crushed those anxiety demons for me. Joel Nowak lives with metastatic prostate cancer and spent at least an hour walking me through what to expect, assured me that most likely this would never bother my dad again, and gave me tips to pass along to my dad to make treatment a bit easier. And Rick Davis, who also had prostate cancer, offered to chat with my dad (or me) anytime about our fears or concerns. On his flip phone. 

Wedding day, 2008

My dad will most likely be okay because he took action. He saw his doctor for regular physical exams, and then didn't balk when a treatment plan was in place, as draining as it has been. In many cases, it really is that simple: visit your doctor, talk about your concerns, follow through with treatment, go on living a healthy life. So this Father's Day, how about reminding the men in your life to visit their doctors? Next step, connecting with support networks.

I love you, Dad. Happy Father's Day.

What Makes a Cancer Survivor, Anyway?

They say you become a cancer survivor from the moment you are diagnosed, for as long as you are alive. If that's the case, later this summer will mark 8 years since I became a breast cancer survivor. Eight years and I still grapple with the term survivor, like I should be on a deserted island competing for a million dollars. Although I guess there are parallels between the long-running reality t.v. show and cancer, like facing unfamiliar challenges that have the potential to kill you. Learning to navigate one's way from an infusion chair to the bathroom while connected by three different tubes to a chemo pole is not the same as learning to fish for your dinner with a spear, though. I don't think.

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I never asked “Why me?” when I was diagnosed with cancer. I knew it was too random for there to be any explanation from the universe that made more sense than that. But every day since I stopped being a terminal patient and moved to the realm of people who can look at cancer in the rear view mirror, I have wondered why. Why did I survive? . . . I’m not sure I’ll ever know the full answer to that, but as one of my favorite survivors said this morning, “I want to help other cancer patients know what the other side can look like.” That, and I want others to know what questions they might ask to avoid a story quite like mine. . . . For me, surviving cancer means falling in love with myself again. It means forgiving my imperfections because they are my story. It means the possibility another life unfolding before me, my toddler chasing our dog down the hallway and around the coffee table while squealing with glee, fearless. She is teaching me to be brave again. It means I get to imagine a future. This is what it could be like. #nationalcancersurvivorsday #breastcancer #bcsm #cancersurvivor

A post shared by Jen Campisano (@jencampisano) on Jun 2, 2019 at 4:48pm PDT

Lots of patients instead mark survivorship from the day they finish treatments. By that definition, I've been surviving cancer for just over 3 years. But that definition doesn't sit well with me, as it leaves out too many who never get to finish treatment. For five years, I thought I would be one of those patients who died with my disease. Was I not surviving then? In some ways, it felt like I was hyper-alive -- surviving in a vivid, punchy, super-saturated way -- during that period. As my friend Emily wrote about living with metastatic breast cancer a few days ago:

I feel like I have been moving at such a frenetic pace lately because I am continually reminded that my timeline has been drastically shortened. How do you fit an entire career, and an entire lifetime, into the space of “months to years”? You can’t. And you don’t. No matter how hard you try.

But oh how we try. Nothing like coming face-to-face with your mortality -- and a generous dose of treatment-based steroids, too -- to shock your system and routines into high gear for a bit.

And plenty of patients, mostly those I know in the metastatic community, but not exclusively, shun the term 'survivor' altogether. For them, it feels wrong to leave out those who didn't make it. The word feels too exclusive and divisive -- and celebratory, even, in the face of what is often a cruel and devastating disease. I totally respect that line of thinking.

On the other hand, I also think this life is worth celebrating, even in the midst of a terrifying shit-storm. As my late friend Lisa Bonchek Adams said so wonderfully when she was facing the end of her life:

“Find a bit of beauty in the world. Share it. If you can’t find it, create it. Some days this may be hard to do. Persevere.” 

My bit of beauty in this world

Sunday was National Cancer Survivors Day. I read through dozens of posts from friends and patients. I watched most closely the posts and reactions from those I know living with mets. I always wonder how they would feel about my celebrating this life, and I worry. But something I heard recently, from Brené Brown because I'm on a kick, touched on the fact that our experiencing joy gives room for others to grieve and acknowledge that their pain is significant. That other people's pain matters because this life is so worthy of celebrating. I am paraphrasing greatly, so I hope I'm doing her words justice.

How do you define survivorship? Does the word ring true for you, or do you turn away from it and find it divisive? Why or why not?

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.