Friday, January 29, 2016

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

"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.

Monday, January 11, 2016

I Can't Thank You Enough

So it appears I really DID run out of words for a bit.

I've calmed down a little, but then I have moments -- frequent, frequent moments -- where I am not okay all over again. My grief and fear come out in irritability, anxiety, and more goddammits than I'd like to admit. I find myself out of patience more often than not, short with Chris (or worse, Quinn) more than I'd like, and then hard on myself for how shitty these episodes make me feel.

This weekend, Chris was out of town and our new puppy peed on the kitchen floor approximately 45 paper towels' worth of times and Quinn might be going through a growth spurt because he wants to eat all of the things all of the time. And -- oh, man -- his whininess. And my grouchiness. And and and.

Our cat is on Prozac, and this weekend, I thought of borrowing a couple of his pills for myself. (I'm joking. Kind of.)

Last night, Quinn needed help brushing his teeth, and called for me. I was moving the dog's crate into my bedroom and didn't respond immediately. My hands were full. Quinn got cranky and snapped at me a couple of seconds later, a full-on yell with a little bit of desperation in his voice: "MOM, I SAID I NEEDED HELP!!" I was already on my way to his bathroom door, showed up a second later, and asked him to remember his patience. "I'm doing the best I can, buddy."

But am I really? I yelled approximately eighteen times yesterday, exhausted and at the end of my rope and just over it.

Quinn is my mirror. These are my faults reflected back at me. Sometimes I really don't like what I see.

My resolution for 2016? Work on my patience. Breathe more. Be mindful in my relationships at home. See less of "mean mommy," who is angry and scared and prone to swearing in front of her 4-year-old, sometimes about dog pee, which is really not his fault in the slightest.


On the drive to my oncologist's office this morning, I listened to Diane Rehm interview Carly Simon about her memoir Boys in the Trees. Simon was talking about a song she co-wrote with her son after an argument between them in which he'd said something quite hurtful. He'd immediately followed her upstairs to apologize. She was crying, and sat down with her guitar to come up with the first verse of "I Can't Thank You Enough." When she sang it to him, he asked if he could help write the rest of it.

So of course I was a blubbering idiot driving to my doctor's office (where I'm now sitting getting my thrice-weekly infusion of Kadcyla). But this came exactly when I needed it, and might be the song I request to dance with Quinn at his wedding. In the meantime, I'll listen to it when I need a reminder to be more careful with my words...or a good cry.

Monday, December 21, 2015

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?


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.

Monday, December 7, 2015

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.

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.

Friday, November 20, 2015

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.