Friday, October 30, 2015

I'm sure I'll be a better mom in November

WE'VE ALMOST DONE IT!!! October is just about done. And thank god, except it means my November scans are right around the corner.

Since my diagnosis, not a day has gone by that I haven't thought of breast cancer, at least a little bit, but that is amplified SO LOUD in October, and not always in ways that help. Then scanxiety sets in (albeit on the early side AGAIN this time around) and I start popping Xanax every night like it's a vitamin. I am so lucky in so many ways, but also so tired sometimes. This disease can wear you out.

In my frustration with things like the NFL fining one of its players for trying to honor his dead mother and my general October-and-scan-induced edginess, I've found myself having to explain to Quinn what it means to have a short fuse because mine has been downright itsy-bitsy. 

I haven't felt like the best mom, and this blog post about swearing in front of your children hit very, very, very close to home.

In front of Quinn, I try to say "sugarfoot" or "son of a gun" or "fudge knuckle" or some other hokey variation on actual swear words but I don't always get it right because that is not always what I actually deep-down WANT to say. And I don't ever swear at Quinn, so much as say things like, "You're smart. USE YOUR BRAIN," when he's asked me why he has to use his napkin instead of his shirt for the twelve-thousandth time. So that's not exactly nice parenting. And then I might swear AT traffic when Quinn is in the car with me, and I don't know if that's any better. 

I've also found myself crying real, actual tears when Quinn told me a couple of weeks ago that Loki (our cat who frequently scratches at our dining room chairs and occasionally throws up all over our fabric couch but never on the hardwood floors) is his favorite "person" in our family. Oh, how that boy loves that cat. I might have been a little offended, which is of course a little ridiculous.

Sometimes I think I need my therapist on speed-dial. (Is there even such a thing as speed-dial anymore?)


I had a dream the other night that Quinn was as tall as me, and I got to see him -- even in the haziness of my dreams, as a 65-inch-tall boy who was almost a young man. He was perfect and handsome and pure goodness. 

I woke up with a tightening in my chest that hasn't quite gone away the last few days. Am I over-doing it at Pilates? Is my anxiety giving me near-constant panic attacks? Are there tumors growing in my chest wall again? 

Will I get to see my boy be as tall as me in real life?

photo by the uber-talented Jodi Lynn


I have had so many friends find out they have progression this month -- in their brains, lungs, stomach, spine, skin, the list goes on and on -- and the truth is, I am scared shitless that the boogeyman who is cancer could show back up in my life again at any moment. Metastatic breast cancer is THAT unpredictable, and as amazing as some treatments are, there is still no cure. My fear has been acting out this month, and maybe it does every October. It's a spooky fucking month.

(Sometimes substitute words are just not at all adequate.)


I wrote all this, and then I went to a yoga benefit class tonight for City of Hope, a cancer treatment center and research facility. I dragged myself there, is more like it. I didn't want to go, didn't want to navigate my way downtown and to the venue and deal with traffic and find parking and all of the STUFF that goes with getting somewhere on a Friday night. (Hello, middle-age, nice to meet you!)

I practiced yoga with a bunch of other people on the field where the Diamondbacks play, did my forward folds and crow poses and shoulder stands under the stadium lights, which was totally surreal. I slowed down a bit. I was reminded to breathe. And you know what? It helped. I might not need a Xanax tonight.

Wednesday, October 21, 2015

Hoping for the Two Percent

Ever since my breast cancer diagnosis, October has become a doozy of a month. I don't know if it's this way for everyone who goes through breast cancer, but I suspect it's tough for most of us who've been told our cancer has spread, that it's no longer considered curable.

It is hard to see the sea of pink -- in the seat-back pockets on my flight home from Missouri on Sunday, there was a flyer telling me I could buy a $2 pink lemonade to support breast cancer awareness. I wanted to scream about how aware I actually am. But Quinn was sleeping on my lap and an elderly woman was sitting beside me, on her way to help her daughter who'd just had hip surgery, so I kept my mouth shut. I raged on the inside.

It was even tough to watch Sunday football with my dad, and not just because the Seahawks keep freezing in the 4th quarter and losing games they should be winning. Pink goal posts and cleats and towels aren't contributing much to the cause they claim to support, and -- at best -- we inch toward better treatments, a few more months of survival (when the average after a mets diagnosis is 3 years), and if we're lucky, milder side effects.

All the while, the general population continues to believe that breast cancer is curable, we need to save the tatas, and early detection saves everyone.

I am exhausted, and it's okay if I blame October for that, right?

To me, this is the great injustice of this sea of pink, these calls to support awareness everywhere you look, most of it not doing much more than marketing products wrapped in pink. I used to think that both awareness and research were important. Now I wonder: Who is not aware?

But also, what do most people really know?

Breast Cancer Education Month doesn't really have the same ring to it.

According to the Story Half Told project I took part in, "Fifty percent of people surveyed said that breast cancer progresses because either patients did not take the right treatments or preventative measures." AND ALSO: "More than 60% say they know little to nothing about metastatic breast cancer." (emphasis mine)

*& %!)%#@!

A man I met a few years ago was saddened to tell me that his mom had beat breast cancer but couldn't beat brain cancer. My bet is that she never had brain cancer, but rather breast cancer that metastasized to her brain. She didn't die of brain cancer, she died of breast cancer. But I did not want to argue with a grieving son, so I simply told him I was sorry.


I try to be careful about the language I use. I no longer say I have metastatic breast cancer but rather that I was diagnosed with metastatic breast cancer more than four years ago. Do you see the difference? I don't know whether it changes anything and perhaps it's just superstition. I couldn't even bring myself to participate in a die-in (as proud as I am of the waves these women are making) because I don't want to say I'm dying of breast cancer -- even if 98% of people with this diagnosis do die of it. I have to hope I'll be part of the two percent.

Why does language matter so much? Why do we who've been diagnosed with metastatic breast cancer care whether you know what the word metastatic means?

Why are we over awareness?

We're really tired of our friends dying, for one. We're scared we will be next, even when we hope we'll live to see the next milestone: our child graduating, or getting married, or learning to tie his shoelaces.

I have nightmares about cancer, in the form of unwanted guests, or sharks trying to come onto shore to attack me, or burglars trying to break into my house, and I wake up sobbing and unable to relax enough to fall back asleep without the help of sleep aids.

We want people to understand how scared AND how hopeful we are, more than they will ever learn by purchasing a can of pink lemonade. We hope that one day these campaigns will go beyond awareness and actually do some educating so women (and men) will know their risk, understand what as many as 250,000 of us are living with every day, and maybe start turning some of the pink consumerism into research dollars that will help us have fewer nightmares and celebrate more milestones.

Instead of buying pink stuff this year, please consider donating to a reputable organization that provides money for research. Here are a few I like, in no particular order. -- the only organization solely focused on research into metastatic disease -- funds the largest project focused on metastasis in the world; highest rated breast cancer charity in the U.S. according to Charity Watch
Avon Foundation -- contributes to critical research AND provides support services for under-served patient populations
Young Survival Coalition -- support for women diagnosed under the age of 40

Thursday, October 15, 2015

This is How We Cope

A friend of mine posted something the other day, along the lines of: "Brain MRI day. There better be brains still in there."

It got me thinking about how we -- those of us who've been diagnosed with metastatic breast cancer -- deal with the barrage of treatments, scans, and uncertainty that make up our day-to-day lives. A lot of us resort to humor.

Another friend posted a photo of her SKULL CAP, which had been removed from her head as part of her treatment for metastatic breast cancer that had spread to her brain. In the photo, screws were still attached to the flesh. My friend joked (of course) about having a screw loose.

I thought her post was hilarious, but I also wanted to cry at the absurdity and unfairness of it. In what other world or scenario would I find a photo of a friend's surgically-removed scalp remotely funny? None that I can think of.

My friends and I make jokes about whether we still have brains because we are in fact SCARED OUT OF OUR MINDS.

Metastatic breast cancer is terrifying. 

So we try to find the humor -- or find other ways to cope.

Sometimes, I feel embarrassed about how emotional I get, so I try to pass it off as being the fault of astrological phenomena. My scientist husband loves when I do this. (Note the heavy sarcasm.) A few weeks ago, for example, I tweeted that I was feeling extra emotional about cancer, and suggested that maybe I could blame the full moon. 

A friend who also has a 4yo son responded that she blames her brain mets. She was like: I see your bullshit, and I'mma cut right through it. As far as I know, I don't have brain mets, but I still reeled at the truth of her statement. Some days, there is no way around it. This shit is real.

Because as much as we might try to make light of our various situations, metastatic cancer is actually a heavy load. It is a LOT to process. As I said to another friend I was emailing with this week: you can't expect to remain sane all of the time. 

Thursday, October 1, 2015

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.