Friday, December 4, 2020

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.”

Tuesday, September 24, 2019

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.

Monday, August 26, 2019

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.' -- BrenĂ© 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.

Monday, August 19, 2019

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.

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.

Thursday, August 15, 2019

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.”


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.