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.

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

I'm Just Here for the Endorsements

What a warm welcome back to this space! Thank you guys for being here while I dust things off and clear out the cobwebs and find my voice again. Why did I go silent for so long? Didn't the metastatic breast cancer community still need advocates?

Am I just back because I want your attention (not to mention the bazillions of dollars in endorsements)?

All joking aside, I do want your attention. God knows cancer still needs advocates, especially in the metastatic community. But I also want to shed light on what it's like to survive what I thought was metastatic cancer -- even the ugly parts. Especially the ugly parts, so maybe they can be less ugly for those who come after me. (Because I would fucking love it if all my mets friends suddenly found out they didn't actually have tumors breaking their ribs, filling their lungs, invading their brains, that instead they, too, had an autoimmune disorder.)

I want to talk about the dark parts of facing a major identity change, even if that change is ultimately a positive one. Yay, no cancer! Go on your merry way, we've got other patients to treat! They include your friends, who will continue to die. You should be so HAPPY! I digress, but maybe in talking about it, the darkness can be less jarring and raw going forward.

For so long, I wasn't ready for that amount of processing here, even if I've alluded to some struggles. I wanted to wait until I'd been in therapy long enough not to just dump everything out here without a filter. You guys deserve a little bit of a filter.

Scan-day, December 2018

Also, I haven't exactly known what to say. Should I write that this past year has run me ragged and bowled me over with a strange mix of joy and sorrow all at once? Babies are amazing, exhausting little creatures. Then, seemingly overnight, they turn into toddlers who are bonkers and feisty, and ours also has the gift of fearlessness. She runs and climbs and tackles our cat or practices for the World Rugby Championships twelve hours a day until I think I might pass out from the effort of keeping up with her. In the middle of it she naps, and I am addicted to the sweaty curls at the back of her head when she wakes up. Wash, rinse, repeat.

Should I mention that more than once, I've broken down in sobs while rocking Noelle to sleep because I am immediately transported back to the fear I felt when Quinn was her age? That my brain frequently tells me I may only have a few days/weeks/months left with my children, probably because I spent 5 years thinking my time was severely limited? Is that normal? Are the nightmares?



And I'll pause to reflect on what I know is true: I am very lucky. Not only were my mets not actually tumor cells, but then my body grew something surprising and miraculous and beautiful, even after the assault of chemotherapy on my reproductive system. While I hope that part of my story -- my motherhood story -- offers a bit of hope and resilience about what our bodies are capable of, I know it will also be a painful reminder of what can't be for many of you. And I don't want you coming here to feel triggered. Nobody needs that, and I get it if you can't stick around.

My therapist believes I have PTSD, which I thought was only for soldiers who'd been in war. I don't even like the battle metaphors associated with cancer, but apparently the mental health outcome can be similar. I am working on new therapies to help, and mindfulness practices to lessen the severity and frequency of panic attacks. I am exercising daily, but like a good friend said recently, I can't spend all my time in the gym. I may need other tools. I'm not ruling out medication. I met with a new therapist who is recommending something called EMDR, and I'll write more about that soon.

Should I tell you that I've had to step away from social media upon realizing some people in my circle are no longer closeted bigots, and so I have occasionally missed the news that a friend has gone into hospice, or worse? Not to mention the woman I thought was a friend who seemingly faked having metastatic cancer and has rocked this community? That I still feel intensely and excruciatingly guilty that I appear to have survived am surviving cancer?

Do you want to know that I joined a board to lend my patient voice to improving diagnostic accuracy because medical mistakes kill as many people as breast cancer each year, and my story has a rare, healthier-than-I-started ending?

All of the above?

I do feel like I owe it to myself and my twelve loyal readers (hi, mom!) to write about the emotional fallout of learning of my misdiagnosis, becoming unexpectedly pregnant, and then parenting from a completely different perspective, albeit with somehow just as much anxiety.

It isn't surprising that enormous changes in identity can wreak havoc on one's mental health.

I also feel like I owe it to the MBC community to continue to advocate on behalf of the women and men who are still dying at an alarming rate. At HealtheVoices a few weeks ago, a woman said we need to find our tribe, and all I could think was, "What if your tribe keeps dying?" I looked at the ceiling for awhile to help me blink back tears. I miss my friends.

So I'll be ramping up my advocacy work this summer, and I hope to share my story in more ways, across more platforms, as I heal from the trauma of my misdiagnosis and rediscover myself. I've missed you guys.