Monday, May 20, 2019

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.

Thursday, May 9, 2019

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

Tuesday, April 30, 2019

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.

Thursday, April 18, 2019

Out of Hibernation

Ahem.

This blog, as my friend Amelia says, has been in hibernation, and it feels strange and raw to type here again, like the first squeaks that come out of your mouth when you haven't spoken in awhile or had your morning coffee yet. God knows I need my morning coffee.

Leave it to HealtheVoices, a conference for online health advocates, to push me out of my rut and remind me that my voice not only has the power to help me heal, but more importantly, the potential to help others. Side note: I was in a car accident about six weeks ago, hit nearly head-on as I was exiting my neighborhood. My neck and left shoulder have been a mess, and I've been seeing a massage therapist and chiropractor to realign things and feel better. But as she was pressing into my neck and jaw muscles last visit, my therapist noted that those are the muscles that go tense when we have things to say but hold them in. So I am hearing this message loud and clear lately: speak up.

I spent last weekend in Dallas for my fourth HealtheVoices conference, and from the opening session on Friday morning it was clear it was going to stir up some emotions. The speakers talked about resilience, specifically about building resilience through sharing our stories. "We don't heal in a vacuum," said the brilliant Kelly Wilson, when talking about struggles with PTSD. I plopped down right next to her at dinner later to discuss specific therapies as if she herself was going to take my insurance and prescribe me treatment. But she was gracious and kind, and extraordinarily humble about her work.

This was HealtheVoices' fifth birthday. This year's theme was inspired by Mike Durbin, who handed out bracelets last year that say, "A little heart can do big things." More than 140 advocates representing over 60 medical conditions attended this year to share their hearts and the big things they are doing. Half of us were veteran attendees. Someone in their third year joked they hoped they could come back for senior year in 2020, which had me wondering whether it might be my time to graduate. I really hope not, because I still get so much from being there.


For one, it's like whoever assigned these quotes (mine was: "The time to relax is when you don't have time for it.") knew exactly who they were talking to. Noted: I need to relax.

But top on my list are the connections with those who simply get what it means to survive cancer -- all of the loss and fear and "holy shit, why me?" that that entails -- creating a sense of family. We joke about missing body parts and how we complete one another, but all joking aside, these are my people and one weekend a year is not quite enough time with them. If I could get Janssen to sponsor a cancer survivors' road trip, I'd be all over it. Seriously, Ann Marie, can we make that happen?

Friends from nearly the beginning of my cancer story đŸ’–
My conference family, from left: Justin of A Ballsy Sense of Tumor, Ann Marie of Stupid Dumb Breast Cancer, Me, and Kyle of Check15
A close second are the connections with people outside of the cancer world. In talking to a mom advocating for her child with schizophrenia or a mom living with rheumatoid arthritis, I realize how many issues we share -- finding time for self-care being a universal struggle. Balancing how we talk to our kids about our (or their) illnesses versus the day-to-day of actual parenting while in treatment is a challenge. We can do better when we learn from other advocates. 


Year after year, I am impressed and inspired by how others are changing the healthcare system from within, putting patients first, lobbying Congress for access to care, and speaking out on blogs, at conferences, on podcasts, and everywhere else they can about what it means to live through illness and, more importantly, HELP OTHERS in the process. I think I am the luckiest person in the world that I get to know these humans and learn from them.

Gabe Nathan and Ann Marie Otis, two of my favorite people
 In this group are warriors battling depression; survivors living with HIV, schizophrenia, epilepsy, and autoimmune disorders; advocates who are in remission from cancer, like me; stroke survivors, and more. I got so lucky when I stumbled across this conference 4 years ago. Every year it reminds me that you never know what those around you are facing (so be kind, always) — AND that our little hearts can do big things.
I'm not going to sugarcoat it -- I've had a tough time transitioning home from HealtheVoices, and I know my therapist is going to ask me if it's worth it for the emotional toll it takes to readjust. YES, I will tell her, probably through tears as I grab another tissue from the box and tell her how I got into a conversation with the guy on the plane next to me on the way home. He had tattoos on his hands and face, and spent most of the flight drawing technical sketches of motorcycles on his iPad. While we waited for our pilot to find a gate to park at, I learned that Bryan designs bikes for a living and was in Dallas for a motorcycle race. I talked about cancer -- specifically my friends who advocate for testicular cancer awareness, and passed along a bracelet from Justin at A Ballsy Sense of Tumor. He said he'd check it out. "That's so cool what you all are doing," he added, and I wasn't even tempted to downplay our efforts. Because at HealtheVoices I rediscovered my voice and at least some of my value, which is no small thing. Even if it means talking about testicles with a stranger on a plane.

And also I learned I should probably have affirmations posted to every bathroom mirror for daily reminders that I am enough. We all are.

Here's to coming out of hibernation. Here's to all our little hearts doing big things.