I Am Out of Words and My Heart is Broken

You'd think that with upwards of 112 of us dying every. single. day, the blows wouldn't be quite so crushing at this point. That perhaps we'd get used to it. Become numb, maybe. Like the rest of the world sometimes seems to be to our plight.

But every so often, a death (or group of deaths) comes along and it feels like we've collectively been punched in the gut. Our hearts ache. We are angry, and scared, and fucking tired. But we know we've got to carry on this fight -- even as we receive chemotherapy and take care of our children and look into clinical trials and try to enjoy every moment because we know more than most how limited time can be -- because who else will fight for us?

Who?

Forty thousand American women lose their lives every year to breast cancer, and yet researchers at the San Antonio Breast Cancer Symposium -- the LARGEST conference in the country addressing breast cancer research -- had almost nothing to say about metastatic disease this year. I was there. I waited for a breakthrough announcement. I listened to the recaps afterward, hoping I'd missed something significant.

Instead: "The mets research isn't ready for prime-time," is what I heard.

How long do we have to wait? Since my diagnosis, approximately 173,333 women have died of breast cancer in the U.S. alone.

"How can we express our urgency?" we asked.

"We get it, just keep doing what you're doing," we were told.

BUT CLEARLY IT IS NOT "GOTTEN" when nearly 8,000 clinicians can gather and have no news about stopping metastatic cancer, the only breast cancer that kills. Instead, we hear case studies about drugs extending our lives by a few months. 

A few months doesn't get me to see Quinn start kindergarten. A few months is not even close to enough. 

A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World.

On Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof -- gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be.

I am angry, and I am terrified. And this weekend, I felt like maybe we as advocates aren't doing enough to make our voices heard, like we let Adrienne (and about six others in my direct circle this week) down. But we can only do so much. We are exhausted, and doing our best.

Who else will fight with us?

I am at chemo today, 4 days before Christmas, wondering how I'm going to get everything done that needs to be done this week to create magic for my little boy because that's what my parents did for me, but also feeling so very lucky just to be here another holiday season. How deranged is that, to have to wonder about whether this Christmas might be your last because the average lifespan after a metastatic breast cancer diagnosis is 33 months.

At 52 months and counting, I am on high alert for when that other shoe might drop. Yes, I have hope I'll be here long-term. But I also know the realities of this disease. They've been especially hard to face this past week.

Quinn asked me what was wrong several times on Saturday, as I sank to the kitchen floor in my grief or cried as I heard the lyrics, "Home is wherever I'm with you..." on the radio while we tried to get in some last-minute Christmas shopping. He offered me big, strong, bear hugs, and all I could manage to tell him was that a friend of mommy's got some bad news.

What else is there to say to a four-year-old?

The truth is, I do not know what to say anymore. My heart is broken. Shattered in about 112 pieces today alone.

Please, please help us.

The Season for Hope

Many of you know my good news already, that my scans last week before Thanksgiving continued to show no evidence of cancer. What a way to go into the Thanksgiving holiday. And that sound you may have heard? That was Chris and me finally exhaling after 48 hours of holding our breath waiting on results.

As the stress started to dissipate, I came down with another sinus infection and had chemo last week (plus a lunch with Arizona's Governor -- a story for another post, maybe -- and hosted a cookie decorating party with a dozen or so preschoolers over the weekend), so I've disappeared a bit from this space. I've been busy living, which is pretty wonderful. I am so very lucky for this beautiful life.

Incredibly thankful for this goofy and handsome dude (who could almost not stop saying "turkey!" today). From our family to yours, happy thanksgiving. This life is such a joy. 🍁🍾😊

A photo posted by Jen Campisano (@jencampisano) on Nov 26, 2015 at 9:24pm PST

But I've also been hesitant to talk about my good news too much, in part because so many of my friends are facing disease progression, chemo regimen changes, or the unknown of clinical trials over the last couple of months. These friends post photos from hospital beds of them with their children, and my heart aches for them. Or they post that they have to leave their families -- now, at this time of year, just to emphasize the magnitude of the injustice of it -- to take part in clinical trials to try to put the brakes on their particular form of breast cancer.

Maybe this drug will be the one that finally stops it. 

Maybe this won't be my last Christmas with my kiddos. 

Maybe I can walk today, despite the pain in my bones from cancer's spread. 

I've become a part of this community. These women are my friends. My diagnosis wasn't terribly dissimilar to many of theirs. In some ways, it was worse, since I was metastatic from the outset while many of them thought they were safe with an early-stage diagnosis. My luck could change at any moment, and their stories could be my story. But for now, I'm relatively healthy.

That is no minor thing. As the saying goes, when you have your health, you have everything. I am so very, very lucky. I try to remember that every day.

***

As Quinn and I were putting up Christmas decorations the other day, listening to Holiday Classics on iTunes, "O Holy Night" started playing. We are not a religious family, but it's still my favorite Christmas song. I choked up, watching my son choose where to put ornaments and feeling beyond fortunate that I get to be here to see it.

And then I started crying as I strung the lights, thinking about my friends whose cancer situations are worsening or who are spending this season without family members because of cancer. The music wasn't helping. I'm blaming you, Mariah Carey.

Is this survivor's guilt? Can you really have survivor's guilt when you've been diagnosed with an incurable cancer? Do the holidays make everyone more emotional? Or is it just the sugar highs (and subsequent crashes)? Maybe I just need a break from Chex Mix.

***
Chris is in the town where he grew up the first half of this week, wrapping up things with his mom's estate: a visit to the DMV, a meeting with her accountant, closing of bank accounts, that sort of thing. We have had our own significant loss this year, and it is going to be a tough holiday without my mother-in-law around.

Later this week, I am headed to San Antonio, to attend a program as part of the annual breast cancer symposium there. I am hoping to learn about advances in research and new ideas in the pipeline for eradicating this disease. I am hoping to bring some more good news back to this community of mine, some more reasons for hope.

After all, it is the season for it.

A Million Thousand Hundred Times

The other night, as I was tucking Quinn into bed, I overheard him whispering to his favorite stuffed animal, Bunny.

"Mom, I was telling Bunny how much I love you."

"I heard..."

"I love you a million thousand hundred times," he said. Sometimes it's "to Pluto and back" or "to the Milky Way and back" or "to all of the planets in all of the galaxies." We have a theme.

"I love you that much, too," I replied, my throat catching. Some nights, his sweetness just floors me. Especially when I've got another scan around the corner and he is seeming to grow up more with each passing day. Can I freeze time? Keep that one tender moment locked in the safe space of my heart forever? Keep all of them there?


Quinn Tornado from Jennifer Campisano on Vimeo.

When I was diagnosed, I wasn't entirely sure I'd get to be here right now. In fact, I had a dream shortly after -- sometime in the fall of 2011 -- of  a toddler Quinn holding someone's hand at a funeral I was pretty sure was my own. The statistics said I had a one in five chance of living to see Quinn turn five, let alone see him start kindergarten. Only twenty percent of women in my situation would make it to the five year mark.

This week, Chris and I have toured three different elementary schools trying to decide where to send Quinn for kindergarten next year. For another time: when did choosing a kindergarten get so complicated?

But kindergarten. My boy.

And me. Maybe just maybe going to get the chance to buy him a new backpack next summer, go school supply shopping with him, see all that he has to show us as he learns even more clearly how to express himself.

It could happen.

Getting Our Affairs in Order

Shame on us, really, because we should have done this years ago. Along with finishing Quinn's baby book and organizing our family photos. See, also: throwing away leftover Halloween candy, drinking more water, and stepping up my cardio game.

But with the death of both of Chris's parents in the last few years (his mom just this summer), not to mention my string of luck health-wise in 2011, 2012, and 2013, it became more and more clear we needed to have our affairs in order. It sounds so final, to "get your affairs in order," but really, it's just the smart thing to do. I'm not planning on dying anytime soon, but you never know. That proverbial bus seems to be all over the place these days.

Also, I'm a lawyer. I know it's important to have an estate plan, if only to keep the courts out of things at the end of your life. Lord knows I don't want some Arizona probate court deciding what becomes of this guy, god forbid and fingers crossed and knock on wood. 

So we met with an attorney, who will draft a plan for us and set things up so that Quinn will be okay even if Chris and I both get hit by a bus. 

I held myself together through the meeting, despite having to talk about what happens if Chris (or I) remarries, who makes decisions if one of us is on life-support, who would get custody of Quinn, and whether you can legally enforce requests for certain included elements at a memorial service, such as the singing of "Ave Maria." (I think this last one was Chris's attempt to lighten the mood. I was trying not to choke on the knot growing at the back of my throat.) 

I know in lots of ways these are first-world problems. We have a house, we are educated and have a college fund for our son, and we have family to care for him should something happen to both of us, which is admittedly unlikely. But something about incurable cancer and making very concrete plans for the end of your life and having scans in two weeks came together to have me ugly crying in my husband's arms this weekend, asking him who would remember snack days at school for Quinn, or register him for soccer and swimming (and make sure he gets to both), or put notes in his lunch telling him how much he is loved? And would he remember that I'd done any of these things for him? Would he remember me? 

Oh, yes, I went there. 

My death is not imminent, I don't think. I am getting to be Quinn's mom, which has made me the luckiest person on the planet these last four-and-a-half years. Mostly, things are pretty good here. Other than cancer, I can't complain! Which is along the lines of the question, "Otherwise, Mrs. Lincoln, how was the play?"

But, oh, can mortality be a terrifying thing. 

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!)

My worlds collided tonight and it was pretty awesome. Yoga in the outfield at Chase Field for @cityofhope with @spiritualgangster and a beautiful community of yogis. @nikmeier #YogaforHope #spiritualgangster #namaste #phoenix

A photo posted by Nicki Adair (@nickiadair) on Oct 30, 2015 at 9:45pm PDT

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.