Take That Win

Last week, Noelle and I toured a preschool.

Now that Quinn's started school again, she's ready to follow.

I should clarify: I know this preschool well. Quinn went there three days a week for two and a half years. We still meet up regularly for Taco Tuesdays -- or lately, Brat Haus Tuesdays -- with the families we met there. The school was a magical sanctuary for Quinn (and me) when I was no longer working but still sick and lethargic from chemo.

Four years ago yesterday -- thanks, Facebook memories

But I wanted to see what Noelle might think. She is almost two -- how in the name of all things holy did that happen? -- and certainly ready for more interactions with people her own size. She picked out her favorite pair of shoes for the trip -- pink cowgirl boots handed down from a friend's daughter.

Walking around the school, seeing the now small-looking playground and the familiar, eclectic classrooms filled with reading nooks and wooden play kitchens, terrariums housing lizards and trays filled with dried beans, pictures of current students and their families on the walls, I stopped in my tracks more than once to catch my breath. I remembered Quinn exploring here. Outside, swinging on those little swings, climbing that upside-down colander / spider web jungle gym and how it terrified me the first time I saw it. Learning to swing on the monkey bars, discovering what happens when ice castles melt and reveal treasures frozen inside, running to jump into my arms at the end of the day, muddy and barefoot and excited with his whole body to tell me about feeding lettuce to the chickens.

A full movie montage ran through my head and I choked away tears.

I hadn't expected that onslaught. As I mentioned, I've been a little emotionally raw lately.

Time is wild. I distinctly remember dropping Quinn off when he was two and a half and sobbing in my car afterward, then writing about how my love would always be with him, while I wondered whether he'd remember me. We ran into one of his early teachers at Target the other day, and she gave me a big hug. When we left, Quinn asked me who she was and I felt a pang in my heart that he didn't remember her. That he might not have remembered me.

Today, it has been eight years since I was diagnosed with breast cancer. 

And it still boggles my mind how time twists and turns and seems to fold in on itself. How I can still feel the tendrils of fear that crawled up my neck after I heard the words, "This is cancer," and I felt frozen, like time had stopped. How eight years can pass in a blink, but August in Phoenix seems to crawl and 110+ degree temps seem to hang on for eternity. How grief can come in waves -- over lost body parts, lost friends, a lost sense of security about what it means to occupy space in this world. They say time heals everything, but I'm not sure that's true.

Stay with me. I don't mean to be grim.

Recently, I was talking with a friend about grief and the idea that it may always be in your life after cancer (or any other loss), but that over time, grief does not sit alone in that space. It doesn't disappear so much as move to the side to allow room for other experiences. Eventually, it is no longer the heaviest tome on the shelf.

I saw this post over the weekend and it resonates so strongly today.

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Take every win!! You don’t really lose when you learn ❤️

A post shared by Mantra Wellness Magazine (@mantramagazine) on Aug 17, 2019 at 9:54am PDT

Eight years, and not a single day has gone by that I haven't thought of cancer. But there is room for more than just my grief now. There is room for pink cowboy boots and a little girl who has no fear of anything in this world. For new beginnings that I get to be here to witness. I'll take that win.

Officially Unemployed...And That's Okay

I knew it was coming, but it was still a blow to my ego to get the notice from my (former) employer in the mail. As of last month, NYSE Governance Services could no longer hold my compliance counsel position, since I've been out on long-term disability for two years now.

My resumé is officially blank. This is probably the end of my career as a lawyer.

I knew I probably couldn't go back. Almost one-third of the time I don't have enough energy to leave the couch. I have entire conversations with Chris and I cannot recall one iota, not one smidge, of the words we exchanged. The only reason I got 5,216 steps logged yesterday is because I'd forget why I entered a room, and end up making something like thirty-five trips back-and-forth across our house in an effort to find something that was in my car parked in the garage all along.

I'd have no business being a lawyer right now. Not a good one, anyway. 

I used to write white papers on how the Citizens United decision might affect a corporation's political donation plan, or help executives determine whether they were effectively training their employees on ethics and compliance issues. (You can wake up and stop drooling on your desk, now.)

Most of the time, my brain does not function on that level any more.  I am out of practice, and it's okay.

It is okay.

It took me awhile to admit that I am finally okay with this new reality, this not having a career that I worked really, really hard to achieve. That I'm okay being a full-time mom and full-time patient and part-time advocate. (I'd be okay without the patient part, honestly.)

It is finally getting easier not to compare myself to my friends whose careers are gaining steam (because that's what typically happens in your mid-30s). I have brilliant, hardworking, ambitious friends in my close circle who're vice presidents of major companies, engineers, surgeons at some of the country's best hospitals, nurses who help bring babies into the world, scientists who help patients get access to medicines they can't afford, professors, and -- yes, stay-at-home-moms who've left their careers as lawyers, too.

I can be proud of them and admire them without thinking less of myself, and more importantly -- finally -- without feeling sorry for myself about one more thing cancer took from me. This is my life, and it is more than okay.

(Don't get me wrong, I still have moments when I feel emotional about the lack of accomplishments I make on a day-to-day basis, like the fact that there are laundry piles everywhere, or piles of old magazines I mean to sort through, or piles of disability paperwork that needs to be filed... Basically, my piles sometimes make me cry.

I am working on some overdue spring cleaning, metaphorically and realistically.)

***

When Quinn asked me the other day why he had to go to school, I hesitated. I wasn't sure what to say.   On average, he goes to school about three days a week. His preschool is community-oriented and play-based, so it's basically days spent painting and making play-dough and reading and building cities out of blocks. Most of the parents know each other, and many of us spend time together outside of school.

So I said, "Sometimes, it's so I can go to the doctor. Sometimes, I get some work done." I didn't tell him that sometimes I lie on the couch and surf the internet for cancer cures for a couple of hours at a time. "But if you don't want to go as much," I continued, "you don't have to yet. I'd love to spend more time with you."

And he responded, "No, I want to go. I want to be with my friends." And then my heart shattered, but also swelled a bit, because my little guy is growing up and his friends are important to him, too.

Plus, I love it that he loves school as much as I did when I was a kid.

Is All of This Perfectly Normal?

This last week has tested every bit of my patience with Quinn, and my patience has failed that test on more than one occasion. I have yelled (granted, there was either a hot glue gun or a dog lunging after our cat involved). I have taken toys away, placing them in a pile on our kitchen counter so Quinn could see exactly how many times he didn't listen to me that day. I have threatened to call Santa.

The thing is, I think I know what's going on. First my mom came to visit. Then my dad and his new wife were here visiting for a week over Thanksgiving, a week in which Quinn hardly went to preschool and was doted on and played with fairly nonstop ten to twelve hours a day. Then they left.

I do my best to play and play and play, but I also have meals to cook, laundry to fold, and a new dog to try to befriend to our cranky, panicky cat. I am no match for Grandma Sue or Grandpa and YaYa. Quinn has reacted pretty much the way he does when Chris leaves for Africa: petulant and ornery and just sort of perfectly three, a phase that typically lasts about a week post-departure.

Lately, if Chris or I ask Quinn to stop doing anything, his inevitable response starts with: "But I was just..." to the point where I told him that the word "just" wasn't allowed in our house any more. I will put a toy on the counter, so help me god.

There's a chance this all has nothing to do with our company leaving, and could just be Quinn picking up on our collective insanity this week -- the seemingly natural craze that comes with this time of year, with ordering holiday cards and shopping for gifts and Chris finishing up his semester at ASU and decorating and holiday parties and all of the STUFF. Not to mention the damn elf on the damn shelf. Also, we added a family member this week. It's a little nutso around here.

I've been waiting for my sweet boy (the one who isn't quite so cantankerous) to make a full-time appearance again. Then last night, he did, and it left me sobbing in bed next to him. We were lying down, talking about our day, our week, and how we'd both like to be better, to do better. I told him about all the things he does to make me proud: introducing himself ("I'm Quinn James Campisano, Quinn James Campisano, Quinn James Campisano...") to a new friend at swimming, being exceptionally sweet with our pets, and cleaning up his toys when it's time for dinner.

He asked to cuddle, then changed the subject somewhat abruptly.

"Mom, when I get older, I don't want to die."

"Honey, you don't have to worry about that for a long, long time." I stroked his hair off his forehead. After several identical interactions over the last week, though, I've started wondering if this is something we need to talk about more deeply. Where is this fear coming from?

Photo c/o Jennifer Bowen Photography

Is this normal 3-year-old stuff? I tried to explain that that's the beauty of this life, that we should enjoy it while we're here because eventually (a long, long time from now, we hope), we all have to stop living. 

"But dying means you're no longer here, and I don't want to go anywhere else," he insisted.

"Some people believe that when you die, you're reunited with your loved ones who've died before you." I tried.

"But I love you and daddy and Loki and Luna! The people in THIS house. I WANT TO STAY HERE." He was getting worked up.

"Honey, we're here right now, and that's what matters, right?" I hugged him a little tighter.

He continued. "When you die, what if we go different places? I don't want you to go anywhere. I don't want you to go away from me." And then I lost it. Usually I can hold back my tears in front of him, but not after that. The tears could not stop themselves. "Mommy, don't cry," he told me. 

I took a deep breath and pulled myself together. "Let's just stay here together as a family for as long as we can, okay buddy?" This seemed to satisfy him and alleviate his worries -- for last night, anyway. 

I did not know parenting was going to be this challenging. These conversations are not getting any easier. Have you talked to your children about death? Am I over-thinking this because of my own situation? Has cancer ruined my perspective? Is all of this perfectly normal? 

Milestones

Quinn was five months old when I was diagnosed with Stage 4 breast cancer. At the time, the statistics I could find (when I dared to look) said about twenty percent of people with metastatic breast cancer would make it to the five-year mark. I couldn't help myself; I equated that statistic with me having a one in five chance of watching my son start kindergarten.

Kindergarten is still two years away. I am not there yet. But I am doing exceptionally well (knock on so much wood).

Quinn started preschool this week, after a short summer break and at the same school he's been attending since last October. School -- if you can call it that -- is not exactly new for him, but he has a new teacher with new friends to make. We bought him a new lunchbox, green with dinosaurs on it.

A lot of the moms of kids in Quinn's preschool are starting to chat about which school our kids will go to for kindergarten, and, slowly, I've found myself joining the conversation. I've spent the last couple of nights (crazy wild weekend here!) researching charter schools and open enrollment options for the public elementary schools in the districts next to ours. Although we love our house and neighborhood, we are nestled between two excellent public school districts. Ours, on the other hand, is just okay. I'm not sure I'm willing to accept "just okay" in a state with one of the worst public education systems in the country.

A lot can happen in two years. Cancer is a sneaky and unpredictable beast, and I still live in three-month increments. But as I was reading about different charter schools' philosophies late last night, it dawned on me that -- sure enough, statistics be damned -- I am starting to make actual, real-life plans to be here for Quinn's elementary school years. I am letting myself believe this could really happen.

We also bought Quinn a big boy bike this weekend. At REI, we couldn't get him off the darn thing. For at least half an hour, he wound his way expertly through tent displays and racks of clothing and the rock-climbing gear. He paused to check out the ropes hanging from the ceiling. "One sport at a time," I cautioned him as he tried to pull himself up by the carabiners.

And then I caution myself because I don't want to jinx anything: one milestone at a time.

The Kissing Hand

Quinn's new school has fall break this week, but one of his teachers offers care in her home instead. She calls it "Fall Break Boot Camp," and they do arts and crafts, sing songs, and most importantly from my perspective, take afternoon naps. Many working parents can't afford to take the week off, so it's nice to have the option of consistent care, with a teacher we trust and the friends our kids are used to.

Since I'm not working, I debated keeping Q home with me all week. What excuse did I really have, other than I want to do some writing and make it to yoga a couple of times and maybe grocery shop without having to fight about the car seat at every stop? I mean, what excuse other than cancer?

I forget sometimes that it's there, that I'm supposed to be resting, that my body is doing a lot of work right now. A friend of mine said her oncologist told her to expect to have about half the energy a normal person has, which makes me feel better when I have trouble keeping up with Quinn and let him watch more "Bob the Builder" than I probably should.

In clothes, I look almost normal, other than the port in my chest (which I realize I have talked about a lot, but not sure I've ever shown you guys, so here it is in all its glory).

And my hair looks like Princess Diana circa 1992, but it's MY HAIR. (See below -- I'm not kidding about the hair, right? I've got an appointment to fix that in the next couple of weeks, in case you were worried.) My eyebrows still haven't quite grown back, either, but otherwise, I look mostly okay. More importantly, I feel mostly okay. I can still go hiking and make it to yoga and take Quinn to swimming lessons, and I am so lucky for that. My quality of life on this chemo is amazingly normal, relatively speaking.

But then I fell asleep with Quinn on his twin bed at 8 o'clock last night, and when I woke up confused and groggy just before midnight, it came pounding into my head like a hangover -- oh, yeah, cancer. And I've got chemo on Monday. And scans next month. And then I might have eased myself back to sleep with some Xanax.

So in the interest of continuity and my health, I took Q in to school Wednesday and today. Wednesday was fine, but drop-off this morning was rough. He didn't want to be there in the first place, and right in front of me another little boy bit Quinn's arm, which made him even more clingy. I stayed to console him for a good fifteen minutes, maybe longer, as he cried in my lap.

Then one of the teachers suggested a book, "The Kissing Hand," which is about a mom's love always being with her kiddos, and theirs with their moms, even when they're away from each other. The story is about a raccoon on his first day of school, but it struck me that it's relevant to any separation from a parent.

As I was reading this to Quinn in the middle of the playroom floor, I felt a hard knot tighten in my throat, and I tried to pass my sniffles off as allergies: "Chester felt his mother's kiss rush from his hand, up his arm, and into his heart." Whenever Chester feels lonely at school, all he has to do is press his hand to his cheek to feel the warmth of his mother's kiss. "Do you feel that, too?" I asked Quinn, with my hand over his heart. My little boy nodded, and I struggled to keep my composure.

I was choked up for the same reason I pause just a bit at the refrain the teachers tell the kids when one is having a rough day: "All mommies come back." How I wish. I hate knowing otherwise, and I try to keep that anxiety of mine from Quinn, although he's been biting his nails lately, so I'm not sure how successful I am.

Anyway, drop-off this morning was rough for me, too. I started sobbing before I even got back to my car. I know Quinn needs to learn he's okay without me at school, and he will be okay when I die someday--all of us eventually are, but--god, do I want more time with him, and to continue to feel well enough to enjoy it.

I'm continually trying to find that balance between spending enough time with him (as if there were such a thing--ha!) and not wearing myself out. Other moms (with cancer or not, working or not), I'd love to hear how you find that balance in your lives.

On that note, I'm off to pick up my monkey to spend the afternoon with him.

This Time of Year

In my Facebook feed over the last couple of weeks, just about every parent I know has posted pictures of their kids heading back to school. You guys have some cute kiddos, you know that? And I can't help but hope I'll be around long enough to see Quinn off to second, third, fourth grade, to his first day of high school, to his high school graduation.

This time of year used to be my favorite. Back to school signaled new beginnings, and the crispness in the air was a sign that the holidays were just around the corner. But there is no crispness in the air here; in fact, it was a whopping 110 degrees out today, so maybe that's why this time of year seems harder for me lately.

Or maybe it's the impending autumnal equinox. Although I really think it's the damn heat. I walked into Safeway the other day, saw Halloween decorations and endless buckets of candy, and had to stop to think about what month it was. I had to remind myself that it's okay--Halloween is next month, after all. They're not jumping the gun (unlike the Christmas displays going on in Costco that started last month; that's just ridiculous). To Safeway's credit, it's not still mid-summer, even though it feels like it is.

And although we'll be a month behind schedule, next month we're switching Quinn out of daycare and into a preschool a bit closer to our house. This new school follows the Reggio Emilia approach, which as far as I can tell just means they emphasize play as a way to learn. The children assist in growing their own garden and raising chickens (once the weather cools down). And starting at age three, the school offers Spanish enrichment as part of its curriculum.

We have the option of either five hours a day or nine, three days a week, and at Chris' urging, we chose the longer days. Because I am exhausted--from chemo, from this heat, from parenting an active toddler who no longer naps--and embarrassed to admit that being a stay-at-home-mom is so much harder than I anticipated it would be.

When you have a baby, everyone advises you to treasure every moment. That is a big task, and it's hard to enjoy every single second when you are exhausted, when you've been up all night with an inconsolable baby, when your heart aches because you've got incurable cancer. On the other hand, I know intimately well that my time with Quinn is limited and I want to make the most of it.

I hope I'm making the right decision--one that will give me more time to rest so that I'm able to keep up with Quinn a little better, one that will give him room to learn in ways I'm not capable of creating (because I've forgotten most of my Spanish and am not willing to raise chickens, you see). Mostly, I hope Quinn will be happy.