So Long, 2016

A lot of people in my circles can't wait to see the end of 2016. And it's not just my circles, is it? By so many accounts, 2016 was a dumpster fire of a year:

So ingrained had 2016-cum-terrible-horrible-no-good-very-bad-year become in our broader consciousness that it came to stand in for something larger than itself: 2016-ness. On Election Day, British writer Owen Jones captioned a GIF of a mushroom cloud: “Just how 2016 is 2016 prepared to be?” He added later, when the early results were favoring Trump: “2016 currently thinks there is ample 2016 to go. 2016 is currently saying ‘heyyyyy! Look how 2016 I can possibly be!’ ”

Other people are all over Twitter talking about celebrity deaths, which were exceptional in 2016, I'll give you that. George Michael, Carrie Fisher, Prince, David Bowie. Us children of the '80s grieved the stars of our childhoods. But every year, women I know and love are dying, too.

This year started out for me as so many Januaries have since my diagnosis, with the death of my friend and advocate extraordinaire, Holley. At the time, my nurse told me that deaths tend to spike in January, patients having held on through the holidays. Without giving it much reflection, I can immediately think of five other good friends of mine who died of metastatic breast cancer in 2016: Colleen, Amanda, Michelle, Lesley, Jody... And the mushroom-cloud GIF embodiment of 2016 doesn't seem that far-fetched.

Holley & me at the opening of A Story Half Told in NYC, in October, 2015, 3 months before she passed away

On the other hand, a hand I envision rising out of the ashes of the bomb that was this year, I can't close out 2016 without reflecting on what a miraculous one it was for our family. 2016 will always be the year I was told I don't have metastatic cancer. 2016 was the year I got to celebrate my 20-year high-school reunion and had my port removed after almost five years of chemo infusions. This year I got to see Quinn start kindergarten, learn to ride a bike without training wheels, and lose his first tooth. 

And this was the first holiday season of Quinn's life that I haven't constantly wondered if it would be my last. 

***

For the past several years, we've participated in a winter solstice ritual introduced to us by our friend Kaye. Some years, she hosts a gourmet, multi-course meal at her home, and over after-dinner drinks we write our wishes for the coming year on scraps of paper. We don't share our wishes with each other, though I suspect everyone in the room always knows what my wish for the coming year is. Some years, I was bald. (Hint: I never wished for hair.) Kaye would say some words about the significance of the solstice and the coming of the light, and we would all light our wishes on fire, unspoken, rising to the heavens to be doled out from there.

I've had some setbacks over the years since my diagnosis, but my wish always seemed to hold. I imagine it is the same wish of most people with a diagnosis of metastatic cancer. This year, we didn't get together with Kaye, but we had friends visiting from DC and shared our new tradition with them. We lit our wishes on fire on our back porch, laughing that some didn't seem to launch far from our patio table. Of course, I hope they still come true, whether they made it to the heavens or not.

The winter solstice was my in-law's wedding anniversary. My father-in-law died of metastatic pancreatic cancer in the fall of 2009, just shy of what would have been their 35th anniversary. Six years later, my mother-in-law died of complications from Parkinson's disease. Sometimes, when we light our wishes on the winter solstice, I wonder if my in-laws aren't still looking out for us, granting us another chance to wiggle a loose tooth or play Santa for our boy.

***

On December 23rd, I paused to remember that same date in 2011 when I was told for the first time that the chemo had worked and there was no evidence of disease. Earlier this month, I was officially re-staged. After a clean scan mid-month, my oncologist told me I'd probably been stage 2B. My sister-in-law commented that I was probably the only person ever to be happy about a stage 2 cancer diagnosis.

2016 was the year I got to wipe the slate clean and say I've probably been in remission since December 2011 -- 5 years now. While that number doesn't hold much meaning for me in terms of magical cancer milestones (I've seen far too many people recur after reaching five years "cancer-free"), I am in awe that I'm still here. I pinch myself nearly daily at the twist my life has taken this year, at the new chances I've been given. 

It was just the three of us -- Chris, Quinn, and me -- this Christmas, we spent it in our pajamas until dinner, playing with new toys and eating Santa's leftover cookies. It was a pretty perfect celebration of life and re-birth, even if we're not churchgoers.

Tonight, we'll ring in the new year and say good-bye to 2016 with some friends and champagne. I'll make a toast to what a crazy, mixed-up, sweet, miraculous, dumpster fire of a year it was. I'll hope for many more miracles in 2017. Cheers, my friends. I love you guys.

Photo by the exceptional Lara Agnew

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.

Good News, Bad News

I don't even remember what the particular news items were, but the other day I said to Quinn, "Go ask Daddy if he wants to hear the good news or the bad news first." So now when Quinn has something to tell me, he'll say, "Do you want to hear the good news?" Followed by something like, "I built a treasure box for my rocket ship!"

With him, there's no bad news.

This is a post about some bad news, though. I've hesitated to write about this because it's not cancer-related and I know I'm inviting so many opinions by opening up about it. But, me being me, I wrote about our dog adoption in this space already, so I figured I owe you guys an update.

Also? The last few weeks have been pure Christmas chaos abundance, with a train ride to the North Pole (where we blamed there being no snow on global warming, and I'm not sure Quinn bought it because it was 29 degrees out and that might be the coldest he's ever been), a cookie exchange party we're still eating the remnants from, a couple of holiday open houses, a family limo ride courtesy of Chris's aunt to view Christmas lights, waffles with Santa at Quinn's preschool, and Quinn asking Santa for exactly two things: a menorah to light candles for eight days at our house and a remote control spider to scare his mommy. Guess which one Santa delivered? 

Hot cocoa on the Polar Express, a new family tradition (even if there wasn't any snow; there was plenty of magic and Christmas cheer and caroling and a visit from Santa and sleigh bells all around).

A photo posted by Jen Campisano (@jencampisano) on Dec 12, 2014 at 7:35pm PST

I hope you all have had equally abundant holiday seasons. I am so lucky to get to experience this time of year, this life I've got with Chris and Quinn, and this was the first Christmas since 2011 that I didn't wonder if it would be my last. Instead, I probably tried a little too hard to put in place holiday traditions that would make the season as magical as possible for my little man, abandoning ship here because there just was no time for blogging after I figured out what to do with the elf every night. 

I might skip the damn elf next year.

Back to the pup. A couple of weeks after we brought Luna home there was an incident that made it clear she shouldn't be in a house with a preschooler (or a cat, for that matter). She was extraordinarily sweet in so many regards and attached herself to me pretty quickly, but I couldn't be as vigilant as I would have needed to be to ensure everyone's safety. It broke my heart even after only two weeks, but the rescue organization took her back earlier this month.

Quinn says our house is boring without Luna, which is true. The good news (if I can spin it) is that our cat has come out of hiding after spending more than two weeks hidden in a closet in the back of the house. And the rest of us are once again in the market for a (child- and cat-friendly) dog. 

Like Watching the Grass Grow

As I mentioned back in June, I've been working on growing out my hair. And I haven't been updating you as promised because it would literally be like watching grass grow. Except, you know -- hair.

At this rate I'm going to be forty-two by the time I have enough to donate. But it's been six months so I thought it would be a good time to finally show you the progress I am making. (Here's where I started, if you're interested.) Also, I went a little darker for the fall, if you're keeping tabs on that sort of thing.

Another thing about this process: I schedule my hair appointments to coincide with my scan results. Am I the only one? Just in case I have to go back on broad spectrum chemo-chemo and lose my hair again, I don't want to do anything to it and be told I'll lose it a few weeks later. So I had my scan on November 10th and my hair color appointment two days later. My next scan will be in late February or early March, so expect another update then -- at which point maybe it'll finally be past these darn ears of mine.

(Also, our family photos are courtesy of Jenny at Jennifer Bowen photography, and I am absolutely thrilled with them.)

Plus, a gratuitous photo of Quinn, just because that expression. He will probably get everything on his Christmas list because of that face. What can I say? Santa is a softie.