Six

My Lovey,

A week ago you turned six. SIX. My incredulousness at your getting older never ceases.

Photo credits: Lara Agnew Photography

As I think I say every year, the passage of time is so strange. It’s now been more than a year -- since about a week before you turned five -- since my last chemo infusion, and I realize with an odd sadness that you may never remember how sick I once was. Will you recall how often we snuggled on the couch watching movies in the days after my infusions? Will you know how often I fell asleep with you at night after tucking you in because the steroids had worn off and I couldn’t keep my eyes open past 8 o’clock, and how the warmth and heft of your little body rooted me solidly to this world when I wasn’t sure how much more I could take? Do you know how powerful your love is?

And here we are, cancer and the fear it brought to our lives not such a tremendous cornerstone anymore. Do you feel the shift?

It has been a year of tremendous adjustments for all of us. 2016 brought some earthquakes to our world, but here we are, still standing. Watching the dust settle. Exhaling. Finding our footing on new ground.

Photo credit: Lara Agnew Photography

You started kindergarten and have learned to really read this year: all of the signs along the road as we’re driving, and books to me at night, which still makes me tear up with pride and astonishment that I’m here to see this unfold. 

You're riding your bike (without training wheels) to our neighbors' house to see if they can play for the entire afternoon, as you should be. You want to be a ninja and a policeman and an astronaut. You played your first season of flag football as a Seahawk, much to your dad’s chagrin. You are interested in trying everything -- though still wary of most vegetables. Karate, rock climbing, ice skating, Lego club, Spanish, your school’s Variety Show, skiing. We have always loved your zest for life.

Still, I have to reign you in a bit because, truthfully, I miss you. 

You are six, and underwear jokes are funny. "Mom! Look under there!" you exclaim. And if I'm caught off guard (or playing along), I'll respond, "Under where?" which makes you giggle every time.  "Haha -- gotcha!" you say. You make up games constantly: let's pretend the floor is hot lava; let’s play the “weird word” game in the car, where you make up a word and try to guess how it's spelled; here’s a game called Toyota collect, where we have to count the Toyotas we pass; this one's called shark attack, and we yell "shark attack" when we see a yellow car; let’s find the colors of the rainbow in order as we drive (purple is always the hardest); now 20 questions or “I spy.” Your creativity and boundless energy astound me.

You’ve lost two teeth and have been visited by the tooth fairy. She leaves you tiny notes reminding you not to eat too much sugar, that you have to take care of your adult teeth now because these are it for the rest of your life. Around the corner is Easter, and with it the Easter bunny, and you've started asking questions about what Easter means, and why in the world eggs and bunnies would have anything to do with Jesus rising from the dead. Rebirth, I try to explain.

Please stay here just a bit longer, in this time and place where you still run to greet me at the end of the school day, where you love and marvel at mud puddles, and still choose a favorite stuffed animal as your show-and-tell item when it's your week to be Star Student.

Six means one-third of the way to eighteen, and I’m not close to ready for it. Time is short, even when you've been given the miracle of more of it. But I can’t write this without acknowledging how flipping lucky I am to be here for any of it. I think I am the luckiest mom who ever was. 

The other day you asked me what an angel was, and I tried to explain that some people believe they're spirits who watch over and protect us. You looked promptly at me and said, "Mommy, you're my angel!" And just when I didn't think my heart could melt any more, you said, "And I'm yours." Yes, love, yes you are. You always have been.

Happy SIXTH birthday, buddy!

Love,
Mom

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

Five

My Love Love,

How has it been a year since I wrote the last one of these? How are you FIVE? Time is a funny thing, isn't it? A couple of weeks ago, on the way to school, you asked me what makes today a new day. I explained that the earth rotated one full turn, that every morning is a brand new day.

"But what makes it different?" you wanted to know, after you figured out that we're always spinning in space -- too slowly to feel, too quickly now that I'm a mom.

"Today we get to choose to be awesome!" I said, apparently having gotten a good night's sleep the night before and doubled up on my morning coffee. "I'm going to try to be an even better mom to you. What are you going to try today?"

You said something ridiculously sweet, like, "You already ARE a good mommy!" Because that's who you are, how big your heart is.

A few days later, we heard this song on the radio about trying everything.



"How is that even possible? For one person to try everything? I don't get it! What does that even mean?" you said, your inflections slaying me. I basically want to carry around a recorder and catch your voice all the time lately. You talk almost incessantly around your dad and I, and I still can't get enough of it.

That morning, we talked about living an adventurous life, about exploring and traveling, about being open-minded. I don't think you'll have any problems in this regard (except maybe when it comes to trying new vegetables). I love seeing the world unfold through your eyes.

For weeks, I'd been filling out family information forms for kindergarten, with questions along the lines of "describe your parenting style" and "what are your child's strengths" and "list anything you would like to keep out of your child's early childhood experience."

I would say my parenting style varies between nurturing -- perhaps to a fault, if that's possible, because I've always loved you with the fear of cancer lurking in the background, wondering how long my luck could possibly hold, so I dote on you a bit -- and freaking out because we're running late yet again and no one can find their shoes or sunglasses and I forgot it's my day for snacks at preschool. I am not quite sure how we're going to get to kindergarten by 8:30 a.m. come August.

But I'm at the point where I can pretty confidently say I think I'll be here to see you start kindergarten (knock on wood), so I'm not really going to sweat it if we're a few minutes late the first week or if your socks don't match.

Your strengths are easy. You are creative, helpful, thoughtful, empathetic as they come, curious, adventurous. I ran out of space on these forms to say all the wonderful things about you. In one of my favorite birthday cards you received, a friend of yours wrote that what he loves about you is how funny you are, then included a story of you standing in front of a mirror at school, saying, "Why are you copying me?" Please don't ever lose your goofiness.

What do we want to keep out of your early childhood experience? Bullying. Violence. Meanness.

What I didn't write: cancer. I wish I could have kept that out, but no one asked me about that one. What goes without saying: death. I really don't want that to be part of your childhood any more than it already has been.

Two days after your birthday, the three of us boarded a plane to Kauai, where your grandparents had requested their ashes be spread. Our second day there, we found a guy who would take the three of us out on his boat to scatter the ashes in the Pacific. You wanted to know why Grandma and Grandpa wanted their ashes spread at sea, what it meant to be cremated, whether it hurt them, where their bodies are now, what happens to us when we die. "What is heaven?" you queried, the end of a long line of questions to which I have only vague answers. I may not have all the answers, but I love the richness of our conversations lately.

I am still scared for the day when you start asking more questions about cancer.

I write these letters to you as the time comes, to reflect on the last year. I don't write them in advance, and I haven't done one of those "cards for every potential occasion I might miss as you grow up" kinds of things. If I died tomorrow, this would be it: whatever I've written for you here, plus snippets in your baby book. I haven't wanted to go down that "just in case" path. I've wanted to believe I'll be here to dance at your wedding instead.

But honestly, I wasn't really sure whether I'd be here for your fifth birthday when I was diagnosed with metastatic breast cancer four-and-a-half years ago. The statistics aren't great, but as your Grandpa Jim would have said, "Statistics don't mean a thing for the individual." You'll have to forgive me if I was a little emotional when you woke up last Sunday and found me in the kitchen drinking coffee and looking at baby photos of you. You declared, "I'm five!" and have said it intermittently over the last week. Riding your bike with no hands yesterday, you stepped it up with, "Being five is AWESOME!" because, obviously, no hands.

Four was pretty magical, too. My heart already aches at how much I'm going to miss our days together when you're in school full-time, busy with activities and friends and all the exciting growing-up stuff on your horizon. But the flip side is that my heart swells with gratitude and hope that I might be here for more and more of it. That you might get to know me like I know you.

How did I get so lucky, little one?

"It's hard not to be happy in Hawaii." -- my very astute 5yo

A photo posted by Jen Campisano (@jencampisano) on Mar 9, 2016 at 3:30pm PST

You question everything, want to see the proof. "Just trust me," or "because I said so," are never going to be enough for you. Some days it makes me batty, but at the same time I love your insatiable curiosity, your not being satisfied with the easy answer, your constant desire to hear the full truth.

I slipped and told you to keep track of your shit the other day, after you'd asked me for the gazillionth time where something of yours was. You stopped, because you knew somehow this was a word I shouldn't have said.

"What's 'shit'?" you asked, a half smile spreading across your face. "'Shit' is a funny word," you went on.

"It's a mommy word, and you shouldn't use it," I said.

"Tell me what it means, and I promise I won't say it," you bargained.

"It's basically poop," I said, hesitant. What had I gotten myself into?

You laughed, and looked at me funny. "Mom, you just told me to keep track of my poop!" Ha ha hahahahaha. Ha. Mommies are hilarious.

To your credit, you haven't repeated the word since (knock on more wood).

***

At night, when I'm tucking you in after we've read your three stories to you -- or lately, you reading to us! -- I tell you I love you more than anything. "I love you more," you say most of the time.

"I doubt it, but tell me how much," I say. I love to hear where your imagination goes.

"I love you to the end of space, past all the galaxies, times infinity," you say, "then back into your heart for you to keep forever." Then: "What's after space?" Of course.

"That's SO much!" I say. I wonder where you come up with this stuff. "I love you that much, too, buddy. And I don't know what comes after space. It's a mystery."

You ask me if I'll still love you when I'm dead. "I think a part of me will, even after I die." What do I know? Anything is possible. I hope that won't happen for a long, long time.

"I think so too. I'll miss you so much," you tell me. I try not to cry. Sometimes I succeed, sometimes not. And you lean in for a bear hug. You're so great at those, and I'm amazed at your strength.

I'm amazed at you. You're five!

Love,
Mama

What I Did On My Summer Vacation

Summer's are for leaving Phoenix as much as possible, it's true, but we are outdoing ourselves this year. Quinn is fond of saying we have to leave or we'll burn up (which might not be far off of the truth). One friend on Twitter asked me if I was moving based on this photo I posted about leaving northern California.

Flamingo Hotel (aka the Dirty Bird), Santa Rosa. Leaving town today and I'm not sure when we'll be back, which is weird for me... but must be completely surreal for my husband, who's called this town home for 34 years.

A photo posted by Jen Campisano (@jencampisano) on Aug 13, 2015 at 8:59am PDT

No, is the answer. We don't have any plans to move anytime soon. As much as I love northern California, we were there to say farewell to my husband's childhood home, not put down roots (although I have to say those Santa Rosa roots look good on us).

In Santa Rosa, we cried and reminisced and told stories about my mother-in-law's giant heart and proclivity for ice cream and possible hoarder tendencies. We hugged family and old family friends and I tried not to think of how many memorials I've attended in the last several years (too many). We packed up memories and memorabilia stored in a house full of love and a lot of pigs (we could have started a pig museum). We sent a few items with sentimental value home to Phoenix and helped Chris's brother get the house ready to be sold. We said good-bye.

Before Santa Rosa, Quinn and I traveled up to Seattle for some healing time in a place that always soothes my soul, with people who never fail to fill our hearts to overflowing. Chris had a work trip to Mexico so I took the opportunity to leave town as well. We hiked to a waterfall where Q accidentally took a dip in a creek and told me the water was "as cold as that time we went to the snow with Grandma Maryann!" How's that for the opposite of Phoenix?

We rode the ferry up to Vancouver Island, where we built castles out of shells and identified whale bones on the beach and made brownie sundaes with Chris's Aunt Kathie (who always knows how to cheer us up).

Photo taken by Quinn!

We went to the top of the Space Needle, and I fell in love with my home state all over again. I drank a lot of coffee (I've heard it's good for the liver). And we roasted marshmallows to make s'mores and celebrated my best friend Alana's birthday as she and I realized we've been leaning on each other and reading each other's minds for more than two decades now. 

I came home practically begging Chris for a place in Seattle (even despite this article). He said I just need to sell my book. I'm working on that. 

After a blissful week in the northwest and an emotional week in Santa Rosa, we drove south east, my husband tells me, to Sacramento for my college friends' reunion -- which this year included 25 of us, eleven of whom were preschoolers ranging in age from eleven months to five years old. It was blissful in its own way, filled with the giggles and cries and overall adorableness of children who are forging the next generation of friendships amongst my tribe. It's pretty special to see.

I've been absent here because I've been really present among some of my favorite people, something I've learned the importance of over and over again the past four years. There is nothing quite like bookending a memorial service for your mother-in-law with separate visits with your best friends and their children for helping your heart heal.

I am so lucky to have such special people in my life (and fortunate that I've been healthy enough and have the means to travel to see them). I hope I don't take that for granted. I hope you all know how much joy and peace and promise you bring to my life. Thanks a million times over for that.

We got home Sunday night, in time for me to return to reality (and chemo) yesterday. As I put it on one Instagram post, "Home from a beautiful, soul-restoring trip to California that broke our hearts and then mended them in the most beautiful way, surrounded by the love of family and friends who are basically family. We are so blessed."

And today, I got to see Quinn off to his first day of his last year of preschool. Maybe it's the steroids, but I was pretty choked up this morning. I am so grateful to be here, to witness this. Four years ago, when I was diagnosed (cancerversary coming up tomorrow), I didn't quite think it would be possible. I repeat: I am so very lucky.

Four

My Dearest Bugsy-Boo,

Last Friday you turned four years old. FOUR. How the heck did that happen? One minute you were my baby boy learning to walk, then you were climbing up and out of your crib with aplomb, and now you are all mud-loving, solid, strong boy, knocking me over with the force of your hugs. Saturday night as I was tucking you into bed, you asked me if you'd be three in the morning. "No, honey, you won't ever be three again," I said. And then the lump in my throat nearly swallowed me whole. Good-bye, three.

 

Three has been a challenge, I won't lie. But even as I write this, I can hardly remember whatever it is that I've found so infuriating. Already, I only remember you telling me things like, "Mama, when I think of hearts, I think of you." Or, "I'll go with you to keep you safe, Mom," when it's dark in the hallway. Or, when it was circle time at school and the teachers asked all of you what your favorite part of the morning had been and every other kid said playing on the playground or snack time, they told me your answer was, "Playing with my mom." Your love is my best medicine, buddy. You are my super-hero through and through.


Just the other day, on the way to your birthday party, after we'd packed the car with your confetti cake and dinosaur goodie bags to give your friends, you said, "Mommy, you're the best mommy EVER!" and smiled at me so earnestly I thought this is it. There is no greater happiness than this right here.

Your sweetness overwhelms me.

Alternatively, you say things that just about bowl me over, like when I asked you not too long ago why you were having such a hard time listening that morning and you said, "I don't want to listen to you because I just get so annoyed." As soon as I picked my jaw up out of my lap, we talked about why it's still important to listen even if you don't always like what people are saying.

Three going on thirteen. I spent the rest of that day either laughing as I retold the story or impressed by your vocabulary. Of course I think you're brilliant, but I am most proud of how much you care for the people you love, how kind and hilarious you are, how big you hug, how you don't hesitate to call me out when I'm being annoying. Pardon me, sir.

Quinn, you have such a zest for life, and I marvel at your ability to take it all in at a whopping speed, going strong and steady at least twelve hours a day, every day, without pause until you begrudgingly collapse into bed after talking me into just one more book, pretty pleeeeease. You have an insatiable curiosity about everything around you. Right now, you want to be an astronaut. You love dinosaurs and fossils (like your dad). You still love to climb--trees now, and your bed as soon as we'll flip it to a bunk bed, and the drawer pulls in our kitchen as if they're a ladder.

At night, you tell me you still have "five more energies," as part of your read me a fourth book strategy. Can I borrow some of the energies? The truth is, I feel stronger and more alive just being a part of your world. Thank you for showing me how it's done.

I am still putting you to sleep every night. I wait for your breathing to get deeper, for you to roll over onto your left side, bunny and kitty and owl and dinosaur tucked in with you, and then I sneak out if I haven't also fallen asleep beside you in your twin bed, Clifford the Big Red Dog as my pillow. You've started calling me out on it, knowing I will go into your dad's and my room to do some work on my computer, that you'll probably come in to join us at some point around midnight, and so you've started asking me if we can just start in my room instead. No, I say, let's fall asleep here first.

A few weeks ago, on a chemo day for me and when dad was out of town, you woke up as I was getting ready for bed. It was early, not even 10 pm yet. You'd had a nightmare, and your crying sounded as if you were still half-stuck in it, like the screams you wanted to scream kept getting caught in your throat. And then words started to come together, as I scrambled down the hallway to comfort you. "Where are you, Mom?" you choked through a sob, sounding panicked. Some spiral in my mind went immediately to the thought I can't leave him. This little boy needs me. I pulled you in for an embrace and said, "I'm here, buddy," over and over again until your sobs became hiccups.

Later, you told me you dreamt bad guys were taking me from you. So I promised you with all the truth I can muster and all the hope in the world, "I'm not going anywhere." For now, our luck is holding, my scans are still clean, and I am eternally grateful for these days, months, years with you.

Here's to celebrating many, many more birthdays together, buddy. (But slow down just a little, okay? We only get to do this once.)

Don't forget I love you more than anything.

Love,
Your Mama