Monday, October 24, 2016

My Tribe Will Understand My Memory Issues

I can’t thank this community enough for your support after my last post. I have cried reading through your comments and emails, Facebook messages and texts. I was scared to share this part of my story. I was worried about what it would mean for my identity (because once you put it on the Internet there’s no going back). I was afraid about what it might mean to break ties with a community that’s become a second home.

I shouldn’t have worried. This is my tribe, and its members are not victims who cry foul when another gets good news. Instead, I mostly heard: this is a miracle, and we love you. One friend said, "We are not kicking you out just because you lucked out!"

I love you all right back.

I still had cancer. I still experienced nearly five years of metastatic cancer. Now I just have different appointments and different doctors to figure out what the best path forward is for me. I’ve got more pain and sometimes even miss the damn steroids. I’ve got similar levels of fatigue (apparently it wasn’t just the chemo). My chemobrain might be slowly retreating, but it’s been replaced by an anxious fear that perhaps none of my doctors know what they’re talking about.

I still feel scatter-brained most days.

And Chris occasionally makes fun of me, but keeping track of it all, then and still: the appointments, kindergarten volunteering, and now, also, a job search, is not something I can seem to manage on my phone. Calendars don’t sync, I fumble with my thumbs when trying to enter new appointments into my device at the end of one doctor’s visit and get frustrated, and inevitably ask for a print out of my follow up visits anyway.

I know. I sound like a dinosaur.

I prefer paper. I prefer a hardcover book, too, although I recognize the convenience of my Kindle for travel. But for my calendar? For keeping track of my life? It’s a spiral-bound monthly planner all the way. My 2016 one has photos of Quinn interspersed throughout, and I'll probably hold onto it forever for that. And because this year has been something else, amiright?

The cover of my 2016 planner. Photo taken by Jodi Lynn Wall, April 2015

A few weeks ago, a woman reached out to me to share her breast cancer story, and to ask if I’d be interested in trying out some of the products she’d designed for the company she works for, Erin Condren. You might have heard of them?

Would I like some paper and pens and organizing pockets and even a journal, too? Yes, please! Sign me up. In ink.

{photo source:}

And then I learned that a portion a full FIFTY PERCENT of the proceeds of these products would be donated to the Pink Lotus Foundation, which aims to provide treatments for underserved communities. To help women who don’t have the means or insurance to help themselves when they’re diagnosed with breast cancer. See, corporate America? There IS a way to do Pinktober correctly!


Side note: do you know how much DISPARITY exists in breast cancer survival rates? That African American women are more likely to die of the disease, and that women of color are less likely to be given information about reconstruction options? That death rates are falling overall for breast cancer, but not nearly as quickly for women of color?

This is why I’ve walked the Avon Walk these past 5 years, with my team raising more than $100,000 to help underserved communities (and provide money for research). It is a cause near and dear to my heart because I have been fortunate, and I hope I don’t take a dollar of that for granted.

Do you remember my SIX THOUSAND DOLLAR shot? One shot. That I received probably fifteen times for just the cost of my copays.

Cancer is expensive. Treatment is expensive, transportation to/from doctor's offices is costly, and taking time off work to receive and recover from treatment isn't a viable option for many, many women. That's where organizations like the Pink Lotus Foundation and Avon come into play. I will support them as long as I'm able.


Last week, I went in to have my thyroid checked, because I’ve gained an unusual amount of weight since stopping treatment. My thyroid appears fine, but my joints all ache. I’ve got an MRI of my knee today, and tomorrow an ultrasound of my right armpit for a painful lymph node (or possibly just the spot where my implant is sewn into scar tissue).

I missed the third presidential debate to be on a flight to Houston to attend a metastatic breast cancer conference as a patient advocate. From what I understand, SNL did a fine job of summarizing the two candidates. I'm going to order my "Nasty Woman" coffee mug as soon as I'm done writing this.

Before my flight to Texas, I helped Quinn's class of 27 kindergarteners plant beet and carrot seeds in their class garden. Friday was a school book fair, this weekend we had two birthday parties, a soccer game, and ASU's homecoming. Tomorrow is our 8th wedding anniversary. I can’t keep track of all that in my head! Pre-chemo, I might have been able to, but now I rely on writing everything down.

And I never do sponsored posts here. I don’t even know if this counts as one. But I did receive some free products, and I am vouching for their awesomeness, so here is my disclaimer. Also, send some love to our tribe member Sam if you get a chance. She’s doing good work, and keeping me a little less scatter-brained in the process.

Monday, October 3, 2016

An Announcement

Last Friday, Quinn's class had pajama day and an ice cream party to celebrate the number of "class compliments" they've received since kindergarten started eight weeks ago. He has grown up so much these past couple of months. He's made new friends and started to find his way at a big, new school with big, new rules. He is learning to read, playing soccer now, and asking for time with his friends more and more. Our dynamic is shifting, and I'm trying to breathe my way through it.

But after school last Friday, he went to the bathroom, then walked around the house in his pajama top and underwear, sending me straight back to his toddler years when he refused to wear pants at home. A glance at his thighs alone had me in tears before I knew what hit me: a nostalgia for what wasn't, for something we'd missed, for a past I can't change.

I spent that evening watching old videos of Quinn: swimming, opening Christmas presents, on our way to adopt our first dog (the one that ended up biting him in the face), telling me I was his best best friend forever. I am a puddle of emotions. How is he five and a half? Again, I borrow from my friend talking about losing her mom: "Two years ago today my sweet mama bear was diagnosed with ALS. Two years. Two years. Two of the longest years of my life. Two of the shortest years of my life. Time bends and twists and deceives the eye and heart and mind. Time, you weirdo contortionist." Time is a weirdo contortionist.

What might it be like to raise a child and not have the fear of cancer looming over you every moment? How might those early years have been different? How might today?

This is one of the hardest posts I've ever written.


You guys know I haven't written here much lately, and I haven't posted a health update in months. I know you've noticed. Some of you have asked, and I've been vague.

I haven't known where to start. I've wanted to be certain, as certain as one can be when talking about one's health, anyway.

Chris always tells me to start with my elbow.

A skin biopsy at the beginning of the year led to questions about my cancer staging. My oncologist wanted to take me off chemo based on the results, which came back as something called sarcoidosis. I wasn't ready to let go of my chemo safety net. Not because of a pea-sized thing on my freaking elbow.

Then I had a scan in March that lit up like a Christmas tree: in my chest wall, my abdomen, my left lung, my spine, the list goes on. I walked out of my oncologist's office as he was handing me the radiology report. Fuck this, I thought. How does anyone deal with cancer progression? How does one face their spouse after news like that, without exposing every fear simmering under the surface? You just hope your partner is a little stronger than you in those moments. Because one of you must steer the ship, and after reading "likely for metastatic disease" in about five different places, I was in no position to steer anything. Afterward, you hope that your partner will take you out for a drink even though it's the middle of the day.

He does, bless him.

Over the next couple of weeks I underwent a slew of tests to determine what was happening in my body. A spine MRI and a pelvic ultrasound were both "unremarkable" despite showing activity on my PET scan. A lung biopsy left me with a partially collapsed lung and a twelve hour hospital visit, but the results were benign: a granuloma with characteristics of sarcoidosis.

Not cancer. Not this time, at least.

I went for a second opinion at the Mayo Clinic. What the fuck? was my basic question to the oncologist there. "If this is metastatic breast cancer, it's the strangest case of it I've ever seen," he told me, after reviewing my scans from the last four and a half years. "We don't tend to see recurrence after a pathological complete response like you had, not with Her-2+ disease."

Where had he been the last several years of my life?


Sarcoidosis is an autoimmune disease that causes inflammation -- typically seen in the lungs, skin, and lymphatic system. They don't know what causes it. Bernie Mac died from complications of it, but it's usually not fatal. While it sometimes goes into remission on its own, the treatment for sarcoidosis is steroids.

Like the ones I'd received with every single chemo infusion over the past fifty-four months.

Three doctors agreed on a course of action: take a break from treatment and re-scan in three months. Those months were a series of panic, panic, Xanax. Like a bad game of duck-duck-goose.

And then my three month scan came at the start of the summer. It was clear as a bell. Clean as a whistle. The radiology report suggested a "complete response to interim treatment," except there hadn't been any interim treatment.

Metastatic cancer doesn't clear up on its own.

I cried big tears in my oncologist's office, part relief, part are you fucking kidding me, part hope that any one of my doctors knew what they were talking about. "I hope those are happy tears," he said. "It's not every day someone gets a miracle like this. This is better than winning the lottery."

To which I say: yes, mostly. I imagine it's also like being wrongfully imprisoned and then released after nearly five years and told to go be happy. I am happy, but this news has required a lot of processing. Like, a shit ton of therapy. I'm still processing. I'm still a puddle of emotions every time I catch a sunset. Or a glimpse of Quinn's thighs.


As the news -- that my so-called metastases have always likely been sarcoidosis -- sinks in and starts to seem more real, I have continued to advocate (albeit a little more quietly) on behalf of the MBC community. But it has come to a point where I feel like in order to amplify my voice and those of my friends living with mets, I needed to be able to do so in a way that upheld my integrity, that allowed me to be my most authentic self.

I haven't been restaged, but if I had to guess based on the size of my original tumor and the number of lymph nodes removed during my surgery, I was probably Stage 3A. I don't know if I'll ever know. As one new friend recently put it, "I will always consider you a Stage 4 survivor." But I am no longer considered a metastatic breast cancer patient.

While I have superb insight on what it feels to be one, I feel it is only fair to withdraw myself from Pfizer's Story Half Told campaign, which aims to shed light on the lives of women living with metastatic breast cancer. Pfizer's team has been more than patient with me on the timing of this announcement. But I know that October will be a big push for the campaign and the stories of the women involved. I could not honorably continue as a face of MBC after learning the news I've learned this summer. In no way do I want to distract from my friends who are facing this disease day in and day out.

I will continue to do whatever I can to bring awareness to the men and women living with MBC, to advocate for more research funding, and to bring hope to people that there is life after a terrible diagnosis. In some cases, the details of that diagnosis may even be a terrible mistake. If my story isn't a plug for second (and third) opinions, I don't know what is.

To the few of you who've shared these past few months with me in silence, thank you for holding space for me to grow into this new reality, and for supporting our family as we learn what it means to start over. To the rest of you who have been such a godsend of strength to us these past five years, thanks for standing by us as we adjust to life after cancer.

I always wanted to be an outlier, I just never imagined it would be in this way. Here's to more sunsets. Here's to the ultimate mulligan. Here's to hope. Here's to first grade...and beyond.

Monday, September 26, 2016

On Aging

What the heck, September? PTA meetings and a conference in NYC and turning THIRTY-EIGHT went and sucked up all of my time this month. Thirty-eight -- how did that happen?  PTA MEETINGS! Ha! Who am I?!

A friend wrote a Facebook post the other day about how time is a contortionist. I spent the other night looking at old videos of Quinn, crying my eyes out because where did my sweet toddler go? Who is this five-year-old who thinks it's hilarious to send his dad poop emojis in a text?

And then I looked at those puffy eyes of mine and realized I am super overdue for investing in an effective eye cream. And possibly also some botox. Five years of cancer has aged me and mama is tired.
About a week before I was diagnosed, 2011.
I recently commented on a blog post written by my college friend and author/mom/cook/all-around-badass Amelia Morris. Its themes are something I've been giving more thought to lately (maybe because suddenly I'm old enough that my child is SCHOOL-AGED and also because he regularly tells me I have a squishy belly. "Uh, because of you," I want to respond).

Amelia, a former gymnast, reflects on the Olympic sport of women's artistic gymnastics and the pressure we women feel to have it all and look good while doing so.

She writes:

"And while I agree that our ideas about the female body and its power are, indeed, unresolved, perhaps the gymnasts themselves have it figured out. Aly Raisman is performing world-class gymnastics; she looks good doing it; and (bonus points?) seems to have a really strong sense of self. As for me, as confused as I am—as torn between appreciating my body and criticizing it, between feeling endlessly grateful for motherhood and feeling trapped by it, between wanting to appear effortlessly pretty and wanting to literally put no time or effort into that aim—I remain hopeful for the future."


I didn't used to think of myself as high-maintenance, but between my eyebrow tattoos and eyelash extensions to give me a semblance of what I had pre-cancer, the occasional mani/pedi to mask the spot where I'm missing a toenail -- thanks again, chemo and five years of Avon Walks -- and actually having to do something with my hair for the first time in five years (NOT that I'm complaining and even though that something is often a ponytail), I feel decidedly higher maintenance than I'd like. I care about how I look. I wish it were effortless but it just is not any more.

New eyebrows (about 8 months ago)!
And don't even get me started on fillers and lip plumping and teeth whitening. I am not there yet. Yet. But the immobile foreheads of every twenty- and thirty-something in my yoga classes reminds me that I am in the minority. I have a plastic surgeon, yes, but for far more terrifying reasons.

Or maybe this focus on our looks is just a phenomenon where I live? But having read Wednesday Martin's Primates of Park Avenue as part of a book club last year (and every cover of every Star or US Weekly at the newstands ever), I don't think so. Also, Amelia doesn't live in Arizona, either.

Still, as much as I lament the scowl lines in between my tattooed eyebrows, or wish I didn't have such extreme bags under my eyes, as much as I'd love to have Kerry Walsh's washboard abs, my comment on Amy's post was about how it took cancer to allow me to -- almost -- stop criticizing and spend much more time appreciating my post-baby body. How crazy is that? That it took being told I had a deadly disease to learn to pump the brakes on being an ass to myself.

Now, Quinn is 5 (and a half), I have purplish scars across my reconstructed chest, a softer belly than before pregnancy, neuropathy in my right hand from radiation or surgery or both, and an inability to move or stretch in ways I could before cancer because of those surgeries and radiation. So much for the cover of Yoga Journal

But I appreciate what my body can do. Hike mountains. Show up to volunteer with a class of kindergarteners. Dive into a late-September pool to the delight of my boy, who knows it's going to be too cold for me (it is). I appreciate what my body has done. Recover from surgeries and radiation. Run marathons. Give birth. Breastfeed. I mean, how awesome is that?! I grew and sustained a LIFE with this body.

I watched this video a while back with tears streaming down my cheeks, and then it showed up again in my Facebook feed a couple of months ago.

I hadn't remembered the part about the women who'd lost their boobs. Pay attention at 2:50. Actually, pay attention to all of it. You are amazing, and beautiful, and strong. All of you. Even at 38 years old.

Friday, August 19, 2016

Flashback Friday

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She looked crestfallen. "Oh," she said.

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

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

Monday, August 8, 2016

Gobs and Gobs (Rhymes with Sobs) of Emotions

Hey, there. Remember me?

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

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

Five years.

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

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


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.


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

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

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

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

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