The Upside of Down

Sometimes the world feels upside down. It can be scary, but a friend once told me scary isn't always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.

Photo by Quinn. My holding a handstand, like me, is a work in progress.

My world has certainly felt upended -- over the last few years since my diagnosis changed, yes, but also very acutely over the past few months. Is it the alignment of the planets? A midlife unraveling a la Brené Brown?

'Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.' -- Brené Brown

I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they're crumbling, and the question staring me in the face is what is it that you're going to DO with your second chance? How are you going to SERVE? As I begin to re-engage with the advocacy community, I have felt a yearning for something...more. A greater impact and deeper meaning to the work I do, which, let's face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don't get me wrong. But I am exploring options for shifting the balance outward a smidge.

Balance doesn't always come easily. Case in point -->

I can dissect all I'm doing wrong here as far as form goes, but at least I'm laughing.

I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was exploring EMDR, a type of trauma therapy, and I promised to write about it...four months ago.

The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it's time to wrap up. I keep feeling like we're just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is so damn hard sometimes. DM me if you know the answer to that.

In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don't know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.

In an effort to augment my therapy appointments, and in light of Quinn's existential concerns of late, I've been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.

This weekend, the yoga instructor, Beau, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is they were both going through the same hardship but neither one knew it because we don't always open up to the people around us. Then Beau talked about a video circulating in the CrossFit community about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how sharing can lead to that. I've seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.

Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude.  I haven't talked about my mental health much here because so much of my recovery is still in process -- but then I'm realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won't be as far away as I think. If I fall, I will stand up again. You guys will help me.

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.

View this post on Instagram

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.

Anxious as a Mother

The other night, Quinn came home from a monthly dinner with his preschool friends and their families, visibly upset, tears pooling in his enormous blue eyes. I pulled him in for a hug and asked what was wrong.

I’d left dinner early to get Noelle to bed, and wondered if I’d missed an incident. As soon as his head was against my chest – when did he get so tall? – his body shook in sobs.

“Oh, buddy, what is it?” I asked. 

“I just don’t want people to keep dying,” he said. 

I racked my brain. Who had died? Had we talked about death recently? We’d just returned from a nine-day trip to Seattle to visit my best friend and her family. Her daughter, my 14-year-old god-daughter, was diagnosed with melanoma in May. That is a whole other post because FOURTEEN ARE YOU KIDDING ME, but two surgeries later and doctors have declared her cancer-free. So we’d talked a little about cancer -- it seems we always talk a little about cancer -- but not about death.

My big-hearted boy

“What brought this up?” I asked Quinn. 

“I’ve been thinking about it since that magazine I read in Seattle,” he said.

What magazine? I wondered. I still don’t know. 

He could see I still looked puzzled. “It was a medical one about people donating their organs, and I just wish people didn’t have to die. I want them to drink from the cup in Indiana Jones.” 

“Remind me what happened in Indiana Jones?” I said. I’d been chatting with Alana on her deck for half the movie, watching the late summer sunset while he’d watched the movie with his cousins. 

Movie night

“There are several cups, and lots of them are deadly poison, but one is a potion that lets you live forever," he explained, his eyes lighting up. "Why can’t we find that and give it to everyone we know, and the people we don’t know, too, so no one else has to die?”

“I don’t know, bud,” I said. “We haven’t figured out how to do that, yet. But hopefully it’s not something we need to worry about for a long, long time," I tried to put an optimistic spin on it, even as I wondered whether I caused this. Is it because he sees me upset about losing friends to cancer? Is it because I had cancer, and his grandpa died of cancer before he was born? Is it because I have other anxieties and fears I'm working through as we speak? Is it just a normal age-appropriate fear that has nothing to do with me? 

And then he surprised me. “I wish I could talk to God about it,” he said.

We are not a particularly religious family. To put it lightly. Chris and I were both raised Catholic, but have stepped away from the church – and any organized religion, really – at different points in our lives. My leaving came more recently, a disillusionment after my cancer diagnosis that I haven't quite figured out how to reconcile.

I don't think I got better because I prayed harder, but I still value the power of prayer. I also respect that millions of people find solace in their churches and church communities. If my son needed this, I would support him.

In parenting, I sometimes have to observe silently and allow my kids to discover their own particular beliefs about how the world works. My job is to support them in a safe, loving, accepting environment as they make sense of this universe in their developing brains. 

So I responded, “Well, you can talk to God, if you want."

"I can?" he asked, like I'd just shown him how to time travel.

"Of course," I answered. "He may not answer back, but we can talk to him. Would that help, do you think? Should we pray?”

“Mmmhmmm,” he answered, and suddenly he seemed so much younger to me than the big kid who just started third grade. 

Of course he needs something external to give him hope and promise that all his worries might be okay, I thought. I don't always have those skills as an adult, and I go to intense therapy every other week. 

I tried to remember how to pray. 

Now I lay me down to sleep. No, too morbid. I asked Chris if he could remember the non-terrifying version of that one. “Nope, that’s all I knew,” he said. 

Ok, The Lord’s Prayer, then. “I used to start with something like this,” I said to Quinn, “something I knew by heart and could repeat every night.” And we went through it, line by line, a matter of rote memorization to me, unfamiliar to him. We finished and he asked a lot of questions about forgiving trespasses and the meaning of temptation.

Am I doing my kids a great disservice by not taking them to church? Why is being an adult so tough?

On Father’s Day, I’d taken both kids to a Mormon Church service. Chris was in Tanzania, and Quinn had requested to go to church where a couple of his friends go. Arrangements were made, we dressed up in our Sunday finest, and listened to the service about a father’s love for his family. Quinn’s friend’s dad gave the sermon, and teared up as he spoke about his dad always being ready to play ball with him, even when he was still in his work clothes and it was still 100 degrees outside. He’d roll up his sleeves and they’d head to the backyard. Such a simple act of love. I thought of all the ways dads show their love, of my own dad, and I wondered if Quinn was absorbing this or just happy to be sitting with his friends eating peanut M&Ms. 

Back to our praying. I recommended that he start with something easy to remember, and then go through what he’s grateful for. “It can be really helpful to think of all the things you’re thankful for. It always makes me feel better,” I explained.

“Everything,” he started. Oh, this boy. My heart. His enormous one. “I’m grateful for my family and friends, for Noelle, for food, our house, clothes, school…”

“For your powerful brain that lets you learn,” I added. “I’m thankful for you,” I said. “And my health.” I was holding him, lying next to him on his bed, our heads resting on stuffed animals.

“I’m thankful for our cars, for our pets…” 

“Yep,” I said. “And then from there, you may want to ask God about what it is that’s bothering you, or what it is you want. When I was little, I would ask God to protect my family, keep soldiers safe and bring them home, make sure children around the world have food, that kind of thing.”

“But what about why we came in here?” he asked. “I want to ask God to stop people from dying.”

Oy.

Our conversations about this have continued for several days now. We've talked about how to cope with our fears, even when we know they won't go away completely. How to use deep breaths and meditation to make the tightness in our chests feel less constricting. We've talked about how I go to therapy, and why that helps.

About how I try to give back to my community in the cancer world to honor those who have died. How Chris aims to be a good dad to keep the memory of his parents alive.

We've talked about how everyone dies, so that what's important is making this life count, and remembering that we are here today.

I've promised him that it is always worth it to love so big, even if it means occasionally losing big, too. To not let his fear shut down his willingness to open his heart.

We've talked about the importance of movement and laughter and, yes, prayer. We've journaled together, written a short story about overcoming fears and finding courage, and have tried dance parties in our kitchen.

But he is just like me in this way. We feel deeply. His empathy knows no limits, as far as I can tell. I only hope we can work through his anxiety a little earlier in life than I started figuring out how to approach mine.

Oof, parenting is exhausting and all-consuming sometimes. (All the time.) AND I HAVEN'T EVEN MENTIONED THE TODDLER.

Put Your Own Oxygen Mask on First

Quinn and I spend half an hour or so most nights reading side-by-side in his bed before I tuck him in. He recently suggested I start reading some of his books, and then he'll read them when I'm done. We have our own two-person book club and so far it is one of my favorite things that has happened to me as a parent. Right now, I'm a few chapters into book two of the Book Scavenger series by Jennifer Chambliss Bertman. The series is about a couple of kids who crack literary puzzles and codes to find hidden books and also solve bigger mysteries. The second book, the one I'm on, is called The Unbreakable Code.

I'm one of those people who's always got a handful of books on my nightstand, and right now I'm also reading Creative Trespassing: How to Put the Spark and Joy Back into Your Work and Life by Tania Katan, a local creative genius and also breast cancer survivor. I met Tania through my friend Sandi a couple of years ago at a storytelling event Tania was emceeing. And listening to her engage the crowd with her enthusiasm for story itself, I decided then and there I wanted to be her when I grow up. When her book came out a few months ago, I grabbed a copy, but it has taken me a little bit to dive into it because time does not grow on trees. Or something like that.

As I was reading Creative Trespassing the other night and highlighting and drawing stars next to passages left and right, including, "The moment you choose to let the world see the real you -- messy, imperfect, warts and all -- is the moment you choose to shine too."

A little further down the page, Tania writes, "And then I look on my  refrigerator to see the poem I placed there in case of an existential emergency, "The Summer Day" by Mary Oliver. The last line of poem is "Tell me, what is it you plan to do with your one wild and precious life?" Oh, it gets me every time. Because this is it, kids. I don't mean to get all life-or-deathsy here, but regardless of what your beliefs are about death or life or life after death, why would you want to squander a single moment of your one wild and precious life?"

I love that passage, and I have long loved that line by Mary Oliver. But here's where it got super weird for me, you guys. The very NEXT night, as I was reading next to Quinn, the kids in the Unbreakable Code book met with a librarian who has a tattoo sleeve on her arm. One of the tattoos is of an airplane carrying "a banner that read Tell me, what is it you plan to do with your one wild and precious life?" Which gave me goosebumps because what are the chances? Sometimes the universe bonks you on the head with these signs, and if I've learned anything, it's to pay attention to the neon signs in your life -- and also lumps and bumps that aren't typical.

And these signs I'm getting lately, I believe, tie into a conversation I was having with a survivor friend recently about self-care versus selfishness.

In a post-cancer world, we survivors are acutely aware of the value of time and the resources that go into how we choose to spend it. For many of us, side effects linger long after treatment ends. Chemo brain is a very real hindrance in our day-to-day lives. Depending on how far out we are from surgeries or other treatments, we may have physical limitations like the extreme tightness in my right pectoral muscle. Many of us struggle with anxiety and PTSD. Despite all of this, we show up in this life because we have seen the terrifying possibility of an early end to it, up close and personal.

We show up by paying attention to our own needs first. Which might sound backwards to some, but what we've learned is that our health is everything. That without it, we are in hospital beds or on chemo chairs or recovering on the couch, and it's much harder to show up as our best selves when we're not well. We know that we can't take care of our families, or advocate for other patients, or live the fullest out of our one wild and precious life if we don't first take care of ourselves. It just doesn't work that way.

This is why flight attendants tell parents to put their own oxygen masks on first. On a plane that has lost cabin pressure, you can't help your child breathe if you aren't breathing.

It's why the spoon theory about how chronically ill patients choose to spend their spoons each day went viral, because others could concretely visualize why we are so frugal with how we spend our energy.

And because I'm on a Brenè Brown kick lately, it's why this quote makes so much sense: "In a society that says 'Put yourself last,' self-love and self-acceptance are almost revolutionary." If we are to show up for this one wild and precious life, we have to engage in self-care, as revolutionary as that might sound to some. So go to the gym, eat the vegetables, have a mom's night slumber party away from your kids, see your therapist, get the massage, walk more, cuddle with your dog, read with your child, do something creative. I am not just talking to the cancer survivors.

Construction Can Take Eons

Driving Quinn to school yesterday, we were listening to The Absolutely Mindy Show on Kids' Place Live. She told a story about an eagle in Kodiak, Alaska, that got ahold of a piece of halibut someone had thrown out because it was freezer-burned. A second eagle then got wind of the feast eagle #1 was having, and a fight for the prize broke out in the air.

I have seen almost this exact thing happen a few years ago visiting my home state of Washington. A heron caught a fish and almost immediately, an eagle came into attack and steal the catch. It is fascinating to watch these majestic creatures that symbolize our country swoop in to try to take what is rightfully someone else's. Metaphors abound.

3 years ago in the PNW - photo by my friend Lara Agnew 

Where we saw the eagle / heron fight

But Mindy was talking about these two eagles, and how suddenly, in the chaos of their dogfight (er, bird-fight), one went CRASHING THROUGH SOMEONE'S WINDOW and landed in her house. The homeowner, Stacy Studebaker, said, ""It was so unbelievably loud. My first thought was: I thought an atomic bomb had dropped and the windows were blowing out." Ironically, Studebaker founded the local chapter of the Audubon Society. 

Mindy went on to describe the mayhem that the eagle caused with its EIGHT-FOOT WINGSPAN and Quinn's eyes went wide as we both imagined the chaos. "That's like the size of a dad, lying down, plus one extra foot on either side," Mindy explained, and we laughed at the thought of a bird that giant in our house. The woman, Mrs. Studebaker, and a neighbor tried to get the eagle outside, 

"But it freaked out again and flew into the dining room and there was just stuff flying everywhere — broken glassware, art supplies, you name it. It was still trying to get out through the windows in the dining room," Studebaker said.

Eventually they maneuvered behind the bird and were able to get it out of the house, which took her and her husband hours to clean up.

"If you could have seen the house, it really looked like a bomb had gone off," she said. "There was glass that had been thrown into a bookcase that was 25 feet (7.6 meters) away and all over the furniture. The carpet was sparkling with glass."

She added: "It was like having a wrecking ball coming through your window — with wings!"

And it was funny, and we were laugh-crying in amazement as I dropped Quinn off at school.

Quinn's wingspan is not quite that of an eagle's

But later, it got me thinking about destruction and how quickly devastation can set in. I mentioned I've been seeing a massage therapist for my neck / shoulder. Last visit, she asked how I was recovering from the car accident. "Honestly? I feel like I take two steps forward, one step back," I said. I was talking about my shoulder, but it could also apply to processing my cancer recovery.

"Construction can take eons," she said.

"What?" I thought, lying with my face smushed into the cradle at the end of the massage table. Conversations are weird when you can't see the other person's face and their knuckles are digging into the muscles under your shoulder blade.

"Destruction only takes a moment, but for the body to recover can take years," she said. This woman is so much more than my massage therapist. She is quickly becoming my secondary therapy therapist.

Years, you guys. One foot in front of the other. Until one day you wake up and the overwhelming, repeating mantra in your head isn't about when the other shoe is going to drop. Suddenly, it is simply gratitude that you can see the other side, that you get to spread your wings and live this beautiful life. I am still somewhere in the in-between, but I am moving forward and taking steps (19,365 a day at Disney a couple of weeks ago).

Acting like movie stars at Disney with my favorite boy

WEGO Health Awards

I'm not sure which one of you did it, but whoever nominated me for not one but two WEGO Health Awards (Best in Show: Blog and Patient Leader Hero) -- THANK YOU!

Some beautiful soul named Rhonda had this to say:

 Jen isn't "just" a patient leader hero. She is THE HERO of all time! The energy Jen gives off is welcoming, wise, & w/ those things brings a level of comfort. You don't have to chat w/ her long before realizing she is INCREDIBLE. From a *terminal* cancer DX to navigating parenthood & autoimmune disease, Jen is here. Sharing. Loving. LIVING. <3   — Rhonda

It means the world to have my work here recognized. As I change yet another diaper or wash another bottle (how do the dried bits of formula get so glued up into the nipples, anyway?!) and feel like I'm not doing as much advocacy or policy work or writing as I'd like lately, it made me a little teary-eyed just to be nominated.

To be fair, we also went on vacation last week, where I was still very much changing diapers, just with prettier views.

I've got to figure out a way to advocate from Hawaii...

In the meantime, here is a truth I've learned, and I think the attribution goes to Madeleine Albright: as a woman, you might be able to have it all, but not all at once. You can go on vacation to celebrate a friend's one-year cancerversary, you can have a kick-ass career (or so I've heard), you can have children and/or pets and be a good mom to them, you can volunteer for organizations that make your heart sing, you can cook homemade meals every night, you can write a memoir, and you can run marathons or hold a handstand in yoga. You just cannot do all these things at once.

Especially don't try to do a handstand while making dinner. You are not Dr. Seuss.

Because this advocacy work (and stay at home mom work!) isn't often paid, and because my husband has a job that expects him to be in the office (the gall), I can't say yes to every opportunity. As much as I'd like to learn more about the science of breast cancer or how to be a better advocate or lend my voice to try to talk some sense into Congress, it's not always feasible, with a 7-month-old and a 7-year-old to take care of. To be honest, I have felt wholly deflated more than once this year because I've had to turn down pretty incredible experiences due to a lack of childcare.

And then the one conference I did attend, I missed the dickens out of my kids. Ah, parenting.

But also, those who say they want to hear and incorporate patient voices could be better about compensating patients, am I right? At least cover some costs so more of us can participate? (Huge shout-out to the team at HealtheVoices here). As for the rest, a woman can dream.

My point is, I wish I was doing more in this space but my efforts have been temporarily curtailed by a peanut named Noelle and her big brother. They demand (and deserve) the majority of my attention for a bit. So it makes me even more verklempt at these nominations because this year has been such a different kind of challenge. Turns out, parenting is exhausting even if you're not also being treated for cancer.

If you have a moment, please consider endorsing me for one or both nominations. I appreciate it -- and you all -- so much.

A Nightmare

What a week. I had my six-month follow up scan on Monday, which always brings an onslaught of new pains and unwelcome sensations in my chest. A strange pull here, a shortness of breath there, a telling knot that tastes like bile in my throat. I have trouble sleeping in the days before, even with the exhaustion of new-parenthood. I growl at the cat for meowing too much and swear more than I should. This is what scanxiety looks like, and when I ask my oncologist if it ever goes away, he just shrugs.

Over the weekend, we got back to Arizona after ten days in Idaho and Washington visiting family and friends. And while it was mostly relaxing, mostly wonderful to escape the heat and visit with loved ones in some of the most beautiful settings that exist, I couldn't shake a sense of panic.

cousins

Chris woke me up one night in the middle of our trip, as I was gasping for air and thrashing with the bedsheets. When he asked me what I'd been dreaming about, I sleepily replied, "Frankenstein." He did his best not to laugh at me at 3 in the morning.

My dream wasn't actually about Frankenstein. Frankenstein was just the only word that came to my sleep-fogged mind in the middle of the night. It was a werewolf that was chasing me. In my nightmare, I had the distinct understanding that if this werewolf caught up to me, it would mean more cancer. As I got more and more entangled in the sheets, the werewolf was closing in on me. Then just as it was about to grab hold of me, Chris woke me up. My first thought was that I hadn't really escaped; I'd just been lucky and awoken at the right moment. Cancer could still be lurking. It took me a long while to fall back asleep.

In a moment of terror on Sunday night as I was feeling helpless about my scans and about the atrocities happening to children at our southern border, Chris stepped in to comfort me. "It probably WILL show something," he said, to which I cocked my head and raised my eyebrows.

What kind of comforting was this supposed to be?

"But it's most likely sarcoidosis," he added. That spot on my elbow is back and lingering, despite a steroid shot in December. I thought back to my incessant coughing at the HealtheVoices conference in April.

Monday afternoon, my oncologist called to tell me my scan was all clear. But then I met with him Tuesday, and the radiologist's report clearly says I have a 4mm nodule on my right lung that has been unchanged since at least 2014.

WTF.

There has never been any mention of this nodule; my left lung was the one biopsied in 2016. I checked my file and the tiny scar next to my port scar.

At home, Chris scoured prior scan reports, and there's nothing except a passing mention of potential radiation fibrosis, whatever the hell that is. In any case, my oncologist isn't concerned and says we'll just watch this spot. Strangely, I am not completely freaking out. But I am calling my oncologist to ask about fibrosis, and my pulmonologist to get a closer lung inspection. And I might need another vacation.

Go Home, Anxiety, You're Drunk

Noelle turned five months old yesterday. Quinn asked if we could celebrate with a party, but I can see right through that ploy for cake. So I said we'd do one next month, perhaps with Funfetti cake. I might even spring for balloons and invite some people because it will be the end of the school year here in Arizona, and maybe our legislature will have acted by then to PAY TEACHERS WHAT THEY'RE WORTH and possibly increase per student spending, too. That would be cause for celebration. What? You don't celebrate your babies' 1/2 year birthdays when they coincide with hypothetical legislative victories?

In the meantime, our teachers have voted to strike if the legislature hasn't acted by next Thursday, which I support 100%. I am surprised it took them this long, considering as a state we are $1 BILLION short of education funding compared to a DECADE AGO. Meaning there has not been an increase in education spending here in my son's LIFETIME. There are reports of rats in some classrooms, buildings are falling apart, and our teachers are grossly underpaid. 

So I fully support our educators walking out until our governor signs adequate funding into law, but I will also be at a conference in Chicago starting next Thursday and unable to help with taking care of our children for a few days. SORRY CHRIS'S BOSS.

More on the conference soon, but this post is supposed to be about Noelle. 

For the grandparents and great-aunts and uncles reading: at five months, Noelle is still weighing in at the tenth percentile, the little peanut. We adore her, and at least once a week, I get teary-eyed at how lucky we are to have her, at how unlikely and miraculous it is that she's in our lives. Baby girl spends her days giggling at funny sounds, drooling until her shirts are soaked, watching her older brother like a hawk, almost sleeping through the night, and has rolling onto her side down to a science. She'll figure out rolling all the way over one of these days. I'm not worried. 

Not about her development, anyway. 

On the other hand, I have been an anxious wreck the past couple of weeks leading up to this time period. At first, I couldn't figure out why. Some people talk about how the changing light around the equinox can exacerbate feelings of darkness or cause a certain tightness in your chest, but we are well past that point in the season. What I've been feeling is more than unease. It's more of a crippling foreboding that something terrible must be about to happen. That somehow, despite our five-year journey shit-show with cancer, we still got off too easy. 

That perhaps we don't deserve these incredible moments with our little girl. YES, I KNOW THIS SOUNDS CRAZY. It also makes it really hard to parent happily and with enthusiasm right now. So what's going on with me?

The last time I had a five-month-old infant, I was diagnosed with cancer. 

Photo of Quinn at almost-5-months-old next to Noelle at the same age, in the same seat. My hand looks like a claw.

The simple typing of that sentence has me erupting in sobs, so clearly I have some processing left to do. So much for this post being about Noelle. Related: I am actively accepting recommendations for therapists who take our insurance. They are surprisingly difficult to find. 

I worry about nearly everything lately, with abandon: violence at public schools, which admittedly is a very real fear shared by many, many parents these days; Quinn choking on an apple while I'm in the other room (hasn't happened, but could); whether my occasional night sweats are normal postpartum or a sign of lymphoma; if the dog has thrombosis (was just a scratch, says the vet, so I can cross this one off my list for now); and all kinds of other scenarios that alert me that my anxiety is on a bender right now. Chris tells me worry is rarely ever productive, which, sure, makes sense if you can consider these things logically. 

Is this just some twisted version of survivor's guilt? A fear that history is bound to repeat itself? PTSD? I mean, I can diagnose myself all day long, but sometime soon I've got to stop fearing the past and worrying about the future, right? And contain my worry to very real things like under-funded schools and how to dress for a conference in Chicago this time of year. I mean, plenty of people have five-month-olds without the sky falling, or so I hear. Right?

Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved

This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.

How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.

He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear.

Wait until he finds out about this blog.

Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?

I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.

1. What rang true again and again in our family was share age appropriate truth, but don’t overshare. 
• a.  For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. 
2. Only answer their specific questions. 
• a.  When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.
3. Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.

I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.

What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, The Magic Tree, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.

Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.

There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.



The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).

Even though I’m not in treatment for cancer anymore, I’m going to keep using The Magic Tree with Quinn to prompt our discussions of cancer, to help us both process what our family went through.

Seven

Dear Quinn-Love,

Earlier this month, you turned seven, and somehow for the first time, it wasn't bittersweet for me to see another milestone pass. When you woke up and gleefully announced, "I'm seven!" I celebrated along with you and happily made chocolate chip pancakes for breakfast. Finally, I no longer wonder if this might be my last birthday with you. The fear of cancer isn't as ever-present as it was for so long, though dammit if I don't have to be terrified of gun violence while you're at school now.

I asked if you’d miss being six and you said, “No,” but then quickly added, “well, maybe a little because it’s the year I became a brother.” Our lives got flipped upside down AGAIN this last year, but you couldn't have been happier to learn you'd be getting a sibling. "This is the best gift EVER!" you exclaimed when we told you over pink cupcakes. And because it's you, you actually meant the baby growing inside of me, though you were excited about the cupcakes, too. 

Watching you become a big brother has filled my heart more than I ever thought possible. You ask at least three times a day to hold your sister, and you play games like "I spy" with her in the car, making up what she might be spying based on what you've learned about how far she might be able to see.

“I’m proud of you,” I reminded you the other night.

“But I’m even more proud of you,” you said, and then added: “Even though you don’t do anything, really.”

Oh, child. I want to rage against that statement but I am too exhausted. And also it makes me laugh. I hope someday you know I've done everything I can to make your childhood as well-adjusted as possible, despite getting off to a rocky and terrifying start.

“Let’s be penguins,” you said to me as I laid down next to you a few weeks ago. “What?” I smiled. “They snuggle to keep each other warm,” you explained. And so we snuggled because it was an unusually cool winter in Phoenix and because I will always love lying down next to you listening to your thoughts, listening to you breathe. I am as reluctant to give that up as you are to give up your iPad when you're watching the Best All Time Football Plays on kids' YouTube.

It seems as if you are either watching (or playing) sports or reading all the time now. It's March, and you've embraced everything about basketball finals, calling out favored teams and star players like you've followed these games for years. I swear, you could have a career as a sports announcer right now. The other day, you asked, "Mom, what does a person do if they don't get drafted by the NFL?"

"Whatever else they want, buddy. You could be a scientist, a teacher, an artist..." I started to explain.

"Well, I guess I better get drafted because I have no idea what else I'd want to do!" you replied.

"Honey, you're seven. You have a long time to figure it out," I tried.

"I just hope I get drafted by a team I like," you continued.

"Me, too, kiddo," I conceded.

We read a bit together at night — right now, A Wrinkle in Time or the Captain Underpants series. You're devouring these chapter books, and I love seeing you get lost in these fictional worlds.

As I remind you it's lights out at night, I tell you I love you more than anything.

“I love you even more than that,” you respond.

“I don’t think that’s possible,” I say.

“But it is...” you chime.

And if it seems like this is all too sappy to be true, that’s only because someone hasn’t met you yet. You are all heart, my sweet boy.

Don’t get me wrong, you’re also stubborn about trying new foods, clingy at bedtime, and slightly over-the-top pouty when you lose at a board game. But I still think you’re perfect.

To which I'm sure you'd say, "Nobody's perfect, mom."

I won't concede on this one.

I love you, Quinn-Bug. Happy (belated) seventh birthday!

Love,
Mom