Well Played, Universe

Exactly one year ago, I was lying in a PET scan machine three months after being taken off of the targeted chemotherapy I'd been on for almost three years. The next day, on the summer solstice, I received the news I shared here last October. You can go re-read it. I'll wait here and hope the link works as planned. 

I didn't think much could surprise us after what we've been through the last several years. Stage 4, metastatic breast cancer at 32 knocked the wind out of me. Being re-diagnosed with early-stage breast cancer and sarcoidosis made us feel like we were living in an episode of House. It took me nearly six months of therapy to be able to talk about it publicly. Talking about chemo-induced menopause and diarrhea had been easier.

Telling my cancer story at the Story Half Told launch in NYC, September 2015

Three months ago, the universe handed our family another earthquake: a very surprising positive pregnancy test. (When I say I'm good on surprises, the universe laughs. Well played, universe. Well played.) I had wanted this for so long, and mourned several times over because I figured it wouldn't happen again after all my body has endured. I knew I was lucky, though, and I think it's clear that I am intensely grateful for the boy wonder I do have. We had made peace with our family of three, but apparently Mother Nature had other plans.

So I reached out to no less than a half-dozen doctors (including friends who are doctors) in various fields about whether this was a good idea. Was my body healthy enough? Would the baby have 3 eyes? Will my cancer come back?

Every single one gave me the green light. An ultrasound at six weeks showed me the heartbeat and I sobbed into Chris's shoulder on the couch that night, still terrified about the potential risks or tough decisions we might have to make.

Tests at ten weeks said we were at low risk for chromosomal abnormalities and that it was a GIRL. I couldn't help it -- visions of the women's march and the sign I'd carried announcing "The Future Is Female" flashed through my mind.

My heart is feeling inspired and uplifted today witnessing millions marching for women's rights around the world, and participating here in Phoenix with these powerhouses. #thefutureisfemale #womensmarch #resist

A post shared by Jen Campisano (@jencampisano) on Jan 21, 2017 at 3:19pm PST

Was it fair to bring another woman into this world at this ominous point in time? I just read The Handmaid's Tale. There is legislation brewing as we speak that will make this pregnancy just one more preexisting condition to add to my list.

Another test at fourteen weeks said we were unlikely to see neural tube defects. What about breast cancer? I thought to myself. Can we put an end to cancer before she has to worry about it? Can they confidently tell me she'll be okay? That I will? Would I really want to know otherwise?

And earlier this week, we had an early anatomy scan, the high-resolution ultrasound that checks that all major body parts are developing properly. She does not appear to have three eyes. She seems perfect, if a bit camera-shy.

I'm midway through week eighteen and definitely sporting a bump that no longer looks like I just ate too many burritos.

We are in the early stages of figuring out how to remodel our house to accommodate a baby, who is slated to join our family around mid-November, just in time for Thanksgiving. I am grateful, I am more fired up about social justice than ever, and I am scared about my capacity to love another being as much as I love Quinn. He tells me I just will, that my heart will grow into it.

Photo by the remarkable Pei Ketron for Story Half Told

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.

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 Story Half Told

So here it is. October is upon us. Tonight, even the lights at the top of the Empire State Building will glow pink.

And Quinn and I are in New York City to experience it. Chris will join us this weekend because he wanted to buy Quinn a hot dog on the Battery Park Staten Island ferry as we make our way to the Statue of Liberty. Still, we're not just here for the cooler temps, the hot dogs, or even the pink lights.

Quinn and I flew out for the launch of a Pfizer-led initiative, A Story Half Told, that aims to change the breast cancer conversation to include stories of those of us living with metastatic breast cancer. The project debuted at Milk Studios last night with a gallery opening of photo essays documenting a day or two in the lives of five of us women, the idea being that photography can make a compelling impact in a way that words often can't or don't express.

Universally, the essays were poignant, raw, and intimately beautiful. You can view them all in their entirety here. In particular, the behind the scenes footage of Holley Kitchen's experience with her photographer, Angelo Merendino, had me completely choked up.

In addition to the photo essay, I was asked to speak at the event.

Here's what I said:

Thank you all so much for being here for the launch of A Story Half Told. My name is Jen Campisano, and this is my son, Quinn — the light of my life.

When Pfizer asked me to be a part of this project a few months ago, I jumped at the opportunity to share my story to a wider audience, to — I hope — give a better idea of what life looks like after a metastatic breast cancer diagnosis. Mostly, it looks like life, with a few more doctor’s appointments.

There are still kids’ birthday parties to attend, laundry to be done, backyard pools to swim in, bedtime stories to be read. There are also port draws, CT scans, chemotherapy appointments, and follow-up visits with my oncologist every few months.

What I want you all to understand from this exhibit is that metastatic breast cancer affects women at all stages of life, from all backgrounds and ethnicities. Cancer does not discriminate.

It is a terrifying, life-altering thing, to be told you have incurable cancer, that you’ll always be in treatment. But I want you to also see how each of us are living in spite of our illnesses.

Most days, we are thriving instead of cowering. We allow ourselves the freedom to rest and recuperate when we need it, but then we get on with the business of life — caring for our children, grandchildren, communities, gardens, and ourselves.

We fall down and then stand up again and again and again, even in the face of grave circumstances. It is what we do.

Quinn doesn’t know any different. I was diagnosed when he was just 5 months old, more than four years ago. I don’t know any different as a mom. We have been together every step of this, he and I.

When I was diagnosed, the statistics said I had a 1 in 5 chance of watching my son start kindergarten. Because of some incredible drugs and my dogged determination (my husband calls it stubbornness) and some very good luck, I have had no evidence of disease for nearly two years now.

I still receive a targeted chemo every three weeks as a sort of insurance policy. I had treatment Monday, then flew out here from Phoenix yesterday when I’d normally be recovering on my couch. I feel a little nauseated, and not just because I’m nervous about speaking in front of all of you.

God willing, I will walk Quinn into his first day of kindergarten next August. With new therapies on the horizon, there’s hope I will dance with him at his wedding, too.

I want that to be the reality for all of us living with metastatic breast cancer. That is my hope for this project: to shed more light and understanding on this disease so more research gets funded so more of us can get back to the business of living.

I am very proud to be a part of this exhibit, which so beautifully portrays the realities of our various lives. With that, here is the incredibly talented photographer who captured my story, Pei Ketron.

***

Maybe we can start to change the conversation about metastatic breast cancer by sharing our stories in new, compelling ways. Please spend some time on the Story Half Told website. Get to know these women, their stories. And then share them, please. The world needs to know, especially as Pinktober descends and pink ribbons fly all around us.

Disclaimer: I worked with Pfizer on a collaboration to raise awareness about metastatic breast cancer. The opinions expressed in this blog post are mine, not Pfizer's.