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

Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.

The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.

So this happened (extra blood work) because even though my CT was clear, my liver enzymes are mysteriously elevated. Dammit. #scantreatrepeat #stage4needsmore

A photo posted by Jen Campisano (@jencampisano) on Jul 22, 2015 at 4:33pm PDT

I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.