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.

I Am Still Screaming (Even if Not on My Blog)

With each one of these false starts, I feel like I owe you all an apology for being gone for so long. I haven't meant to disappear, and I haven't even given up on blogging, I don't think. My friend Sandi says that sometimes she closes her journal and moves on to another one, whether the pages are full or not. Sometimes, she's done with that chapter of her life and needs new pages -- and a new journal -- for whatever's next. I don't know if that's where I am with this blog, but I like her approach. Am I done with this chapter in my life? In the sense that I am no longer a full-time patient, yes. In the sense that I am fired up and trying to advocate for a better world for cancer patients and survivors, not even close.

So what's my excuse for being away for so long?

That "E" is for employee. Today I started a (very part-time) position as an adjunct professor teaching international law. I'm still noticing frequent bouts of chemo brain but hope, with practice (and help from my real professor husband!) I'll get used to this working world thing again. Here's to dipping my toes in the waters. Or just jumping in full-force. 💦

A post shared by Jen Campisano (@jencampisano) on Jan 19, 2017 at 11:58am PST

Well, there was the whole issue of teaching international law to actual students, which meant reading and dissecting case law and contextual background and news (SO MUCH NEWS) enough to be able to explain the materials in a mostly coherent way twice a week for the spring semester. That is done now except for some final grading, so we'll see how they -- and I -- did. We all did okay. Mad props to my husband for professor-ing full-time for more than seven years now. That shit is not easy. And I didn't even have to apply for grants.

Side note: Don't get me started on funding for science. I will point to the fact that it was 99 degrees here yesterday, 14 degrees above average, and it's STILL APRIL. See? I started this post ages ago. Now it is hotter and I am angrier. For example: WHAT THE FRESH HELL IS UP WITH THIS ADMINISTRATION'S BUDGET PROPOSAL? 

But what I'm most angry about this spring is the four vibrant, beautiful, young friends I've lost to metastatic breast cancer in the last couple of months, and how the issue of cancer death is only going to be exacerbated by this White House's policies toward healthcare and science (not to mention its general disdain for women).

In a super emotional state last week sometime in April, through uncontrollable sobs, I texted my friend Deborah to ask, "Why me? Why did I survive?" She wrote back exactly what I needed to hear: "As for your friends dying - I don't know why you're ok and they're not. And I don't know why you lived in a reality where you had mets and your friends did, too. Then you didn't have it but they still do and now you have to watch them all die of this thing you were going to die from...that's fucked up. I can say all the good things like how you can advocate for them and since you're not going to die, you can keep fighting for funds and research but really? It's just fucked up. You're going to relive this over and over and it's not fair. It's awful."

It is awful.

I look at Mandi's last post from the beach, or the posthumous entry by her husband (grab your tissues), and I hate that she didn't have more options. Breast cancer got into her spinal fluid and there was basically nothing left her doctors could do, even though they tried a number of drug combinations. I think of how she counseled ME through the uncertainties that arose with my diagnosis change last spring, before I'd told anyone else in the community, how she assured me even as she faced pain and drug failure after drug failure.

I look at Anna's beautiful video,



which I can hardly watch past the point where it shows her artwork that says, "but I have two small children" (5:02). But you should watch it. Watch as these women joke about setting up a dating profile for Anna's husband, or writing a letter, "to the future mother of your children." Too many children are losing their mothers. I remember my conversations with Anna about how hard it was to parent with metastatic cancer, but we just did our best to appreciate every exhausted moment, even when we felt like shit because of treatment. I remember how she walked me back from crazy-town when I thought a terrible headache meant brain mets. She had brain mets, and that wasn't what hers felt like, she promised.

I look at Louise's obituary, and think - she was only 42, which sounds at once so young and also so very old in the mets community I know, where most women are in their thirties and praying to see forty. Weez, as she was known, lived with mets for more than seven years. When she was still on Facebook, she cheered whenever I posted a "no evidence of disease" status.

I look at the tributes to Beth, and remember how we laughed at sharing the same birthday. I wasn't as close to her as some other women were, but I had so much respect for her calming, steadfast presence in the world of MBC advocacy. That's the thing about MBC advocates, though -- eventually, most of them die of the disease they're trying to end.

*****

In March, I went to Oakland to attend my FIRST Young Survival Coalition Summit. I'm part of YSC's 2017 class of RISE Advocates, which I'll write more about later, assuming I can find my focus this summer. I hadn't made it to a YSC Summit in the past because they always coincided with Quinn's birthday, which I wasn't willing to miss. This year, the summit was a weekend later, so I went. There is nothing quite like finally being able to hug a friend in person after knowing them online for years. But I realized I am still very much straddling two worlds, or trying to find my way in one as I no longer quite fit in another. I'm part of the "survivor" crowd now, though I don't know if I'll ever be comfortable calling myself that. I got a lanyard colored to indicate more than five years since my diagnosis. I did not get a metastatic-colored lanyard. But the majority of my friends fall into that group. They're the ones I joined for dinner.

Eight of the ten women in this photo live with metastatic breast cancer. Can you tell who? They are my tribe, even as I am no longer one of them. And even if it's not always through blogging, I will keep doing my part to be a voice for them.

Want to help? Please raise your voice to talk to your Senators over the next few days and weeks, to tell them to reject the terrible House legislation that would allow states to end protections for those of us with pre-existing conditions. How? I have my Senators' local and DC office phone numbers programmed into my phone. I call them regularly. I am polite, but make sure I relay my point. I don't always know if it's effective, so I also make a point to send the occasional letter. There are apps who will reach out for you, too. Whatever method you choose, please just get involved. My friends' lives are on the line, and I'm really tired of being angry.

Gobs and Gobs (Rhymes with Sobs) of Emotions

Hey, there. Remember me?

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

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

Five years.

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

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

TWENTY PERCENT.

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

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

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

KINDERGARTEN.

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

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

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

And he's off. 😭

A photo posted by Jen Campisano (@jencampisano) on Aug 8, 2016 at 9:22am PDT

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

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

A Series of Catastrophes & Miracles

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

Here I am mid-sentence talking about the importance of research to more success stories like mine (and raffling off prizes from Reynvaan Family Vineyards). I've had 2.5 years with no evidence of disease because of science. My teammate @jessdresang and I raised more than $2100 this weekend. Thank you to everyone who came out to support us, to everyone who's supported me over the last 5 years. FIVE YEARS! #avon39 #metsmonday

A photo posted by Jen Campisano (@jencampisano) on May 16, 2016 at 2:38pm PDT

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

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

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

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

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

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

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

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

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

About A Series of Catastrophes and Miracles

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

Purchase Links

National Geographic | Amazon | Barnes & Noble

About Mary Elizabeth Williams

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

Honored and Humbled

I received a surprise email last week, letting me know I'd been chosen as one of Healthline's Best Metastatic Breast Cancer Blogs of 2015. I didn't even know my blog was being considered! The email went on to say that "Healthline’s editors carefully selected each winner based on quality, frequency of updates and contribution to the community. You can see the full list here: http://www.healthline.com/health-slideshow/metastatic-breast-cancer-blogs."

I am beyond honored to be included among some of my favorite people in this community. It's a community none of us wanted to be a part of, but here we are writing through our experiences, sharing our hopes and fears, and even advocating for change in the research world. If you're reading this, I encourage you to take a peak at some of the other honorees' sites. These are some badass women. 

And I do think we're collectively starting to make a difference. People in high places are starting to take note of the plight of those living with metastatic breast cancer. I, for one, can't wait to see the end of MBC as we know it. We're not there yet, but just since my diagnosis four-and-a-half years ago, the average life span is already starting to increase for those with mets. 

HURRY UP, RESEARCHERS!!!

I received this fancy badge to embed on my site, which you may have noticed on the sidebar. I'm humbled, and honored, and so incredibly appreciative of your support -- my readers, friends, and family -- over these past several years. Thank you for keeping me going.

Thirteen days after my diagnosis, I started this blog. I started my first round of chemotherapy (Taxotere, Carboplatin, and Herceptin) the next morning. I was scared out of my mind, but eager to eradicate this beast inside of me. Initially, I intended my blog to be a means of communication when medical information was seeming to come in at warp speed. A good friend suggested it, and I thought it would be easier than sending the same email to concerned friends and family a hundred times over.

I never expected my little space on the Internet to blossom into what it has become, a therapeutic outlet for me that has also embedded me in a powerful community of thrivers and advocates, moms and can't-be-moms, daughters, sisters, and wives. I didn't expect I'd have my heart broken so many times. I didn't even really expect to still be here nearly five years later. I didn't expect that I'd have strangers reach out to connect with me through the ether to tell me their stories and say thanks for sharing mine. Words have so much power. Thank you for reading mine.

Heading to the Windy City

As I said, I'm working on a few advocacy endeavors, trying to figure out what I'll do with all my free time once this puppy is potty trained and Quinn is in kindergarten next year. KINDERGARTEN! I swear he was just learning to walk last week. Now look at him go (in the dark green).

Quinn hits the slopes from Jennifer Campisano on Vimeo.

One of the things I've signed up for is an advisory role for a conference taking place in Chicago in April. It's on how to build better online communities for healthcare, how to amplify our voices as patients and find each other as we stumble around in the dark after a devastating diagnosis, waving our little candles of shared experiences at one another.

Can you relate? Have you got an online presence in the healthcare space? Are you living with a disease -- whether cancer, diabetes, mental illness, HIV/AIDS, you name it? If so, I encourage you to apply to attend.

If selected, each participant's airfare, provided meals and hotel costs will be covered by Janssen and you will receive a formal agreement for your review and signature indicating that you agree to these terms. Janssen is accepting applications through February 22, 2016.

"The mission of HealtheVoices is to provide educational tools, resources and inspiration to help you better serve, expand and grow your online communities. We believe our 2015 conference was a great success because of the close connections that were formed across multiple health conditions, and we want to encourage you to consider being part of the conference again this year.

This year’s conference will feature nationally recognized keynote speakers focused on the power of online patient communities. New sessions will highlight the value of video blogging, how to maintain consistent fresh content for your communities, growing your impact as a patient advocate, while returning favorites will dive into new areas in analytics, how to handle compassion fatigue and more!

Janssen will once again be covering costs for travel and hotel accommodations."

You can see my post on last year's conference here, help the folks at Janssen's partner Everyday Health out by taking a survey about why you read my blog (and others) here, and look at some of last year's highlights and SUBMIT YOUR APPLICATION TO ATTEND THIS YEAR'S CONFERENCE HERE. I hope to see you there! And if I miss you in April, I'll be returning to Chicago in June, but that's a post for another day.

Who wears a wig to Pilates anyway?

Wasn't it just Christmas? Where did January go? How are the Seahawks not in the Super Bowl?

I've spent January mourning the losses in our metastatic community, trying to enjoy sleep-deprived new-puppy-parenthood, briefly visiting my brother and his family in Spokane, and making room for a few other advocacy endeavors I've got going (stay tuned!) Not to mention start-of-the-year doctors' visits, dental check-ups, and a biopsy of a weird spot on my elbow thanks to an overly-cautious dermatologist.

I haven't found much time to collect my thoughts these past few weeks. I've been waiting for my words to come back. Waiting for my anger to subside.

Related, I find, to letting go of some anger is me trying to work on my patience. It was my one resolution for 2016. As one mama put it on theglow.com:

"I wish I was better at patience. I had a lot of it when it was just River, but I physically feel my patience going throughout the day, in a way it used to not go. Sometimes I have to lock myself in a bathroom to gather it up again. And it isn't just the kids, it's life. Kids with life, it's a lot, and takes a toll on your patience. I try to think in my head a lot when I feel myself getting frazzled. It's good to just check in with my inner self and remind it that nothing is more important than the right now, so focus on right now." - honest and beautiful words from @latonyayvette which resonate deeply with all mamas as we try to be in the moment with our kids #theglow #motherhood #honesty #patience #inthemoment

A photo posted by The Glow (@theglowdotcom) on Jan 25, 2016 at 6:49pm PST

"Nothing is more important than the right now, so focus on right now." Yes, a million times this.

Last night I dreamt that I had a bad PET scan, even though I'm not due to cross that bridge for another couple of months. I dreamt that I had to start broad-spectrum chemo again, that I was losing my hair but didn't tell anyone until my friend noticed I was wearing a wig at Pilates. I woke myself up crying. Scared. Angry. Quinn was in our bed, between Chris and me, and I snuggled up against him, inhaling his little boy scent, feeling the reality of his warmth and the steadiness of his breath until I was able to steady my own. It was -- for now -- just a bad dream.

Nothing is more important than the right now, even at 3:30 in the morning. But, man, do cancer and mortality and friends dying know how to mess with a girl's subconscious. My nurse (and friend) at my infusion center tells me there's a pattern to these deaths, that she's been doing this long enough to know January is the worst. People set goals for the holidays.

In that case, I'm setting a goal for Christmas of 2074.

I hope to get back to some sort of regularity here sometime soon, but in the meantime I've been busy focusing on the right now -- busy with soccer practices and birthday parties and puppy hikes (much shorter than regular hikes) and trying to think of ways to better serve this metastatic community to which I belong. As I said, I have some things brewing. I hope they'll pan out. I hope they'll make you guys proud. Please bear with me.

You Can't Judge a Book by Its Cover

Although I haven't seen the movie, I just finished reading / listening to Unbroken: A World War II Story of Survival, Resilience, and Redemption by Laura Hillenbrand. (Side note: did you know you can switch between the two -- reading and listening -- and Kindle/Audible will sync with one another for some books?! This isn't sponsored, just a tip that blew me away and made finishing this book infinitely easier for me because I could listen while I hiked or drove because I haven't had much time to sit lately, so I thought I'd share.) The irony is I had treatment yesterday and have hardly left the couch today.

Unbroken is an epic tale of one man's life, from boyhood rebellion to Olympic runner to airman in World War II. In the war, his plane went down in the Pacific and he was stranded at sea for more than forty-five days on a disintegrating life raft. When he was "rescued," it was by Japanese, who put him in a variety of POW camps where he survived the unthinkable for more than two years. On the back cover blurb of the book, it says: "Unbroken is an unforgettable testament to the resilience of the human mind, body, and spirit. . ." 

My reading of such an incredible tale was timely, as I headed to a conference last weekend where I met dozens of people who are a further testament to the resilience of the human mind, body, and spirit (not to compare what we've been through to what our servicemen endured in WWII, but humanity in the face of hardship can be pretty incredible). The HealtheVoices 2015 Conference brought together more than sixty health bloggers from around the country, representing various conditions for which we advocate (and for most of us, live with): cancer, HIV, diabetes, cardiovascular disease, mental illness, Crohn's/colitis, and rheumatoid arthritis.

A photo posted by Jen Campisano (@jencampisano) on Apr 18, 2015 at 7:13pm PDT

This conference was, as far as I can tell, the first of its kind. It brought dozens of voices together to explore how to collaborate across our varying ailments, think about how to raise the volume on our advocacy efforts, and -- most importantly, I think -- discover ways to more effectively serve the patients and caregivers who turn to us for support.

The summit was sponsored by Janssen Biotech, Inc. in collaboration with Everyday Health, and I should point out that Janssen paid for my travel expenses for the summit. All thoughts and opinions expressed here are, of course, my own. 

I spent all day Friday traveling to the NYC area, where I was greeted by Ann Silberman of Breast Cancer? But Doctor. . . I Hate Pink! I've known Ann online for a couple of years, and I'm pretty sure she's the reason I got invited to this summit, so I was especially excited to meet her in person. And as Shakespeare said, “Though she be but little, she is fierce!”

There was a cocktail reception that evening followed by a dinner program in a windowed room overlooking the Hudson River and the New York skyline. It was an effort to focus on the speakers and not the view (seen here the next morning when I got up early to walk around a bit and soak it in).

Saturday kicked off with an inspiring and entertaining keynote by Dr. Zubin Damania (aka ZDoggMD), who told us we were part of the next wave of medicine, Medicine 3.0, if you will, in which medical information would be open and available to patients, relationships between providers and patients would exist like they did in the past, but would be more of a partnership and less of a paternalistic relationship, and that we, as online advocates, would be part of making that transition happen. He spoke to us about leaving his career as a doctor at Stanford (by way of some hilarious and avant-garde videos) to help open a membership-based (like a gym!) primary care clinic in Las Vegas that goes beyond traditional medicine by offering a range of services, including yoga and counseling.

Saturday was a whirlwind of breakout sessions on a range of topics aimed at making us better at what we do, including a session on legal issues in online advocacy that almost made me nostalgic for law school.

There was a little time for catching up with other attendees between sessions and during meals, and then we broke into smaller groups for dinner Saturday night, where I had the privilege of sitting next to the inspiring Chrisa Hickey, who writes about living with a son who was diagnosed with schizophrenia when he was just eleven years young. She has taken this challenge and turned it into a loving and safe online community of parents facing similar circumstances.

Like so many bloggers I met this weekend, she has been faced with the unthinkable, picked herself (and others) up from the doldrums, and put one foot in front of the other until life was bearable again. Resilience, indeed.

After dinner, I spoke with a man who was diagnosed with Stage 4 prostate cancer more than nine years ago and told he would probably die soon. He did not. I met a marine who was about to be deployed to Afghanistan when he got the terrible news that he was HIV positive. I spoke with another young mom who is sometimes debilitated due to her rheumatoid arthritis. Not one of these people looked sick. I don't look sick, either.

Here is a photo of those of us who were attending and write about breast cancer. Four of the five of us have been told we have metastases. Three of the five of us are in remission. I don't think any of us appear ill. (From left to right: Kathy-Ellen Kups, RN, Life with Breast Cancer; me; Vickie Young Wen, I Want More Than a Pink Ribbon; Ann Silberman; and Heather Lagemann, Invasive Duct Tales.

What I learned this weekend above and beyond how to be a better advocate, if I didn't know it already, was you never know what someone else might be going through. I looked around the room and realized that if we weren't all there together, I would never expect most of these people were facing any health hardships. You just never know. The old adage is so true: you can't judge a book by its cover. Also, never underestimate the resilience of the human spirit.

Around the Web: In Memoriam

The cancer community (and at least a few others) reverberated with the death of blogger and frequent tweeter Lisa Adams last week.

{photo source}

One woman posted on Facebook, “It is hard to explain to your family why you’re crying over the loss of someone you’ve never even had a cup of coffee with.” Another explained our collective crying, in part:

#bcsm When a cancer sister dies, it is unavoidable: terror of our own death coming by the same means arises, unexpected and strong.
— Xeni (@xeni) March 9, 2015

It's not just fear of our own mortality, of course. We also miss our friends.

I am not alone in missing Lisa's wit and quick comfort. Even in 140 characters or less, she knew how to get straight to the heart of a matter, what to say, how to be a friend, the right words to use to educate the rest of us about clinical trials, palliative care, end-of-life decisions, and how to stay positive through it all (to paraphrase: find or create a bit of beauty).

My friend Renee's birthday was this week. I miss her, too. And Brigid, and Jen, and far too many others to list here.

So, yes, we grieve for our friends. But there is a large dose of fear. We who are living with metastatic breast cancer can't help it. We wonder: when will our luck run out? How will our families cope? Will our children remember us? Have we done enough to leave our marks, given our limited time (and energy)? Will there ever be an end to this disease? Will it (could we dare to hope) be in our lifetime?

Here is a round-up of the news and research that I hope is moving us in the right direction. My hope sustains me. It brings me out of my fear. Here's to hope. And research.

A New App that May Help Advance Research

"Apple could have slapped a pink ribbon on their iPhone cases during October, or donated a percentage of their October pink iPhone sales to one of the breast cancer organizations, and called it a day. Instead, they chose to put skin in the game, working with Sage Bionetworks to develop ResearchKit -- a completely Open Source (read: FREE) platform for the medical research community to help collect patient-reported data efficiently, effectively, and inexpensively."

You can learn more or download Share the Journey here.

Manipulating Cells' Shapes to Treat Breast Cancer?

"Changing cell shape – through mechanical, chemical or genetic means – could be a new way of assisting the body’s own inflammatory response to fight cancer.

“Interest in using the body’s own inflammatory response to fight cancer has been reinvigorated recently because of the promising results of immunotherapy. Our study further supports the need to explore the role of inflammation and cancer, in order to enhance treatments and the body’s own ability to eliminate cancer cells.”

Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said:

'Cancer cells are in a battle against the body’s natural failsafe mechanisms that seek out and destroy them. This study underlines the importance of a cancer cell’s shape in helping to tip the balance in its favour, not only dodging an immune reaction but actually thriving in response to it. It also shows that manipulating cell shape could help tip the balance back against a tumour.'”

Another Treatment Option in the Pipeline for Her-2+ Cancers

"Poziotinib is a novel oral, pan-HER inhibitor that has shown single agent clinical activity in breast cancer, gastric cancer, lung cancer, and colorectal cancer, and is currently being studied in several Phase 2 clinical trials.

Poziotinib has shown a remarkable 60% response rate in early clinical trials in patients with breast cancer who had previously failed multiple lines of treatment, including HER2-directed therapies trastuzumab and lapatinib."

Hope for Fertility Preservation in Certain Early-Stage Breast Cancers

"A major international clinical trial has found that the risk of sudden onset of menopause can be significantly reduced by adding a drug called goserelin to the chemotherapy regimen. Women who took goserelin and wanted to have children also were more likely to get pregnant and deliver a healthy baby.

'Some of the most distressing side effects of chemotherapy in young women with breast cancer are early and sudden onset of menopause and infertility,' said Kathy Albain, MD, senior author, medical oncologist and Director of Loyola University Chicago Cardinal Bernardin Cancer Center's Breast Cancer Clinical Research Program. 'These findings provide hope for young women with breast cancer who would like to prevent early menopause or still have children.'"

Lowering the Cost of Cancer Medicines

"The Food and Drug Administration approved the first copy of a biotechnology drug for the U.S. market, firing the starting gun on a new industry that could help the U.S. curb its $376 billion in yearly drug spending.

The drug is a rival version of Neupogen, an Amgen Inc. treatment prescribed to chemotherapy patients."

I never needed Neupogen. Instead, I was given Neulasta, a similar drug that is long-lasting rather than fast-acting. Both work to stimulate white blood cell production. My Neulasta shots cost something on the order of $6,000 per infusion, and I got one after every treatment on my old chemo. 

This news could save a lot of people a lot of money. 

Speaking of Money, A Little Grant to Fund Metastatic Breast Cancer

Care to match this, Congress?

The Promise of PARP Inhibitors for BRCA-Mutated Breast Cancer

"The FDA’s recent approval of the first PARP inhibitor, coupled with current research, suggests that this new class of targeted therapy has great potential to help not only patients with ovarian cancer for whom the agent is indicated but also individuals with breast cancer. Mark E. Robson, MD, clinic director of the Clinical Genetics Service at Memorial Sloan Kettering Cancer Center, presented on this topic at the Miami Breast Cancer Conference.

“It is an exciting time. We have an approval for olaparib (Lynparza) in ovarian cancer and there are active phase III studies for olaparib and other PARP inhibitors in metastatic breast cancer for patients with BRCA1/2 mutations,” said Robson."

This One's for My Husband: Chemo Brain Might be Treatable!

Hallelujah. Right, Chris?

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.

My Writing Process

Chris and I recently finished construction of a two-car garage (and conversion of our existing one-car garage into a mother-in-law suite). It was a several months-long project that finished up just in time for us to park under cover before the steering wheels became third-degree burn hazards. 

When I’d moved to Phoenix after law school in the summer of 2008, I hitched a U-Haul trailer to my car and towed it across the country, that 124 cubic feet holding everything I owned in the world. Chris had a small apartment’s worth of stuff, and we combined our belongings--as couples do--but had a number of boxes and bins that neither of us unpacked. We had a storage closet, and that’s where these things went. Later, we moved to a slightly larger apartment, then our first house, then this bigger house we’re in now, and still these bins and boxes of who-knows-what stayed sealed and on our to-do lists.  

During construction, we kept this extraneous stuff in storage along with other items--small furniture, our bikes, luggage--that had to be moved out of our house or garage to make way for the construction crew. So Chris made it a priority--a command really--that we would not move these bins and boxes back into our new garage without going through them first. 

When he was home between trips the last weekend of June, we spent a solid day while Quinn was at preschool making piles out of the contents of these containers: trash, donate, or keep. There were the bridesmaids dresses I’d worn in three separate weddings (none of which still fit, to my chagrin), all of the ski clothes I’ve owned since 1995 and haven’t used since before law school, several sets of duvet covers for that period in my twenties when it was the only way I could afford to redecorate, a good number of notebooks and saved exams from college, including the graded lab results from this catastrophe, and my journals, notes, and writings from creative writing classes I took in high school and college. 

I spent too long (stay on task, Campisano!) poring over these, wondering why I hadn’t focused more on my writing between then and cancer. Sure, I wrote advocacy letters and proposed legislation and, later, law school exams and a harmless-sounding “note” sixty pages long for law review. I wrote appeals to bankruptcy judges and proposed settlements and codes of conduct and policies on sexual harassment. But I wasn’t writing for myself.

Until my diagnosis.

And now I can’t stop writing for myself. 

Quinn and I are visiting my mother-in-law (more on my weekend walk in a few posts to come soon), and the fourteen year-old girl who lives across the street came over last week to entertain and play with Quinn. She wore a Batman bracelet I asked about. She told me the meaning, then said her “internet friend in Pennsylvania” had one just like it. 

I have those, too -- Internet friends, women I’ve never met (and a couple I have), whose stories are so woven into the fabric of my own story that when one asked me if I’d participate in this “Writing Process Blog Tour,” I didn’t hesitate even when I realized it was a chain letter-type thing, which are not my favorite. I didn’t hesitate because Joanna’s words so often speak to precisely what I’m feeling at the very moment I read them, it’s uncanny. I wanted to do this post, continue this thread, because I think our stories tether us to one another as human beings. 

Whether we are in Arizona or Tennessee or London or Nairobi, our stories connect us. This may be especially true in the cancer community. Stories inform, educate, offer solace, and call forth a cheering section. Stories can be an escape, an adventure, make us laugh, punch us in the gut, take us to faraway places, or bring us home. 

How and why I write now is intricately bound to this internet community and my friends who are also out there sharing their stories, putting on their brave faces. So I couldn’t help but do this post. 

Each of us bloggers was tasked with answering the following questions, then passing the torch on to three other writers/bloggers whose work we admire. Thanks for including me, Joanna.

1. What are you working on now?
The book, always the book. I’ve set a goal for myself to finish draft one by Labor Day, which seems so fitting. I’m also trying to keep this blog going, because I think it serves a different purpose--sharing pictures of Quinn, of course. I occasionally write for Huffington Post, or do guest blogs, too, which you can find here and here and here (!) this Friday, the 18th. There is also be a cool partnership in the works that I’m deeply excited about. 
2. How does my work differ from others of its genre?
There are loads of mommy-bloggers out there, but I don’t know of any others with Stage 4 cancer. And there are a lot of cancer bloggers out there, many of them moms, some of them also living with Stage 4 breast cancer, but the pool really starts to narrow when we get to that point. I hope I bring a unique perspective to this sphere; it is something I am always considering. When I start to doubt myself, I remember this adage: everything has been done, but not everything has been done by you. 
3. Why do I write what I do?
I hope it helps. I love it when I get a note from a stranger saying my writing hits home, that she feels less alone in her fears because of what I’ve shared, that she’s also learning to take it day-by-day. I also write for less altruistic reasons: I write because I feel antsy when I don’t, better when I do, and I believe that processing all of the shit I’ve been through helps clear it out of my system, helps me be healthier. 
4. How does my writing process work?
It usually starts with one sentence. It always starts with a sentence, but what I mean is sometimes the beginnings of an idea will come to me at the most arbitrary times, so I do what I can to write them down, those sparks. Like Joanna, I rely on the Notes function on my phone a lot. For my blog posts, once I have an idea in mind, I typically write through in one fell swoop in a couple of hours or less, usually at night after Quinn has gone to bed and the dishes have been done and Orange is the New Black has been watched. Most of the time, the post needs some editing, so I give it another look in the morning, if Quinn’s at school, or in the afternoon if he happens to nap in the car, or the next night -- whenever I can get to it, really. For whatever reason, the book is different. The familiar, conversational voice of the blog doesn’t seem to translate to that format quite the same. I want to give more detail, so I have to research notes and journals and emails I’ve sent to get the facts straight. My process when it comes to the book is more tedious. I also want to make sure I’m not completely plagiarizing myself, so I try not to tell every story the same way I told it here. It is more painstaking, but it also (I hope) will tell a more complete story than I’ve been able to on my blog. The blog is fun; the book is work. I love them both, but they are different beasts.

To pass the torch along . . .

The first is Emily McDaid, a dear friend of mine from college who writes suspense novels, runs a PR firm, and raises two young children with her husband in a suburb of Belfast, an ocean away from where she grew up. In a word, she’s superwoman. She writes frankly and honestly about writing fiction and the grueling, humbling self-publishing process. She writes about living and raising her children in Ireland, and how it compares (and sometimes doesn't) to her home in upstate New York. 

Second is Lara Huffman, who writes the blog Get Up Swinging. Lara is one of my aforementioned Internet friends, and we’ve never met in person but one of these days I want to share our stories over a beer, in person. She is a feisty breast cancer survivor and incredible writer whose snark I love so much. Lara writes about breast cancer not only as a survivor but as a woman who lost her mom to the disease at a terribly young age. I can’t wait to see what she’ll write next.  

Finally, Beth Gainer is another woman I met through the online breast cancer community. Like me, Beth is a mom. Beth writes about her experiences and emotional state after cancer (and how there's never truly an "after") and motherhood on her blog, Calling the Shots. She is also a professor, a published author, and a patient advocate (it’s what her book is about--how to navigate our complicated healthcare system in the face of a terrifying diagnosis). Her posts are always insightful, thought-provoking, and beautifully composed. 

Check out these writers, especially next week, when they'll be posting about their own writing process and introducing some of their favorite bloggers to keep this chain going. 

My Summer Plans

I told you I'm growing out my hair, but the truth is I've set an even loftier goal for this summer: to finish the first draft of my book. In the last few weeks, I've also been writing about my experiences for a couple of other blogs, which I hope to do more of going forward. For now, you can find those posts here and here.

As for the book, my agent and I are buckling down. I've drafted my proposal, my bio, my intro to potential publishers, and maybe 2/3 of the actual book itself. It is a ROUGH 2/3, to be sure, but it is written. I've just Got. To. Finish. This. Thing.

I'm feeling very inspired. A couple of weeks ago I finished reading Wild by Cheryl Strayed and almost immediately started at the beginning again. Reading this book feels somewhat like the trajectory I've had writing my own; it took me a half-dozen starts and stops over the last couple of years to get past the first chapter, but once I got into the meat of it, I could hardly think of anything else. (If you haven't read Wild, I highly recommend it.)

And so it is with this project of mine. I can hardly think of anything else lately. Maybe my book won't get read, but maybe it will. Maybe it will help one person. Maybe a few dozen. Maybe my story will resonate and reverberate and be made into a movie starring Natalie Portman (Chris likes her and she's willing to go bald). No matter what happens, I feel compelled to get my story out in the world, to fill in the many blanks that weren't quite right for blog posts or Facebook status updates over the last three years. 

Some people say writing a book is like giving birth. If that's the case, I'm feeling a strong urge to push right now. My guess is there will be a lot more work than I can even imagine possible, but my hope is that I'll have something incredible to show for it when I'm done. I can't wait to share that with you guys. 

If I'm spotty here over the summer, it's because I'm pouring my creative efforts into birthing this book. With no changes in my health (hallelujah), I've been kind of feeling like I am just updating you on life raising a toddler anyway, and there are plenty of blogs for that. I will update here when I can, or if anything changes, or if Quinn does something particularly adorable. Probably when I finish walking 39.3 miles next month. Certainly when I have my next scan in August. And absolutely when I hand over my manuscript to my agent to see if he can find it a home.