Thursday, July 26, 2018

To the Dogs Who Run in Rough Waters

Almost ten years ago, Chris and I celebrated our honeymoon on Maui. We coordinated the trip to align with a dear friend's wedding -- the same friend who suggested I start this blog, actually. (Hi, Sara.)

Sara and her husband Steve's wedding was breathtaking, set on a hilltop overlooking Molokini. The groom's cake was in the shape of a Hawaiian shirt (because they don't take themselves too seriously and cake that looks like a floral shirt makes everyone happy). There was a reading called the blessing of the hands that went something like this, and had many of us choked up:

Blessing of the Hands

These are the hands of your best friend, young and strong and full of love for you, that are holding yours on your wedding day, as you promise to love each other today, tomorrow, and forever.

These are the hands that will work alongside yours, as together you build your future.

These are the hands that will passionately love you and cherish you through the years, and with the slightest touch, will comfort you like no other.

These are the hands that will hold you when fear or grief fills your mind.

These are the hands that will countless times wipe the tears from your eyes; tears of sorrow, and tears of joy.

These are the hands that will tenderly hold your children.

These are the hands that will help you to hold your family as one.

These are the hands that will give you strength when you need it.

And lastly, these are the hands that even when wrinkled and aged, will still be reaching for yours, still giving you the same unspoken tenderness with just a touch.

I still get choked up reading that. Because I am a sap. I can't help myself.  
As Chris and I celebrated our new marriage (we were so young and innocent then!) and our friends made vows to begin theirs, another new romance was budding. Our mutual friend Patricia hit it off with the groom's cousin, which was somewhat scandalous and amusing at the time.

But the heart knows who the heart wants.

Four years ago, Patricia and TJ got married in DC.
Four years ago: me with Patricia (center) and Sara, who inspired me to start this blog
The stunning couple

More than a dozen years ago, Patricia and I were neighbors in DC. We became friends shortly after her mom passed away from stomach cancer. She saw me through my own heartache, but she was never one to wallow so neither could I. With a sternness befitting someone who spent her early years in communist Hungary, she would push me to get back out there and remind me that I'm fabulous just as I am.

She watched my cats when I went out of town; scolded me when I'd have a late-night cigarette after getting home from a bar (she could hear my window open, and would open hers to tell me to quit it); and gave me something to aspire to because she OWNED her condo which I thought was the epitome of success.

And then, when I had moved across the country and was diagnosed with cancer, Patricia was one of the first people to swoop in and help take care of my family after my mastectomy. I hardly remember the week she was here, I was in such a Vicodin-induced stupor. I'm sure she told me to be nicer to Chris. She made Quinn giggle and brought him books, and made sure our cats were fed. She probably made sure we were fed, too.

Through all of this, her love TJ was in and out of stability (though not remission) from Hodgkin's Lymphoma. In his own words this spring:

So not only was Patricia caring for my family, but she was also worried about her own spouse. She mentioned a time or two to me that she was terrified, that being a caregiver is FUCKING tough, but she was always quick to put the focus back on TJ (and me). "It's YOU guys who have to go through it  all and have all this poison put into your bodies," she'd say.

When I'd occasionally go back to DC for advocacy work or a visit, I'd try to meet up with Patricia and TJ. He and I would compare treatments over miso soup or brunch. We'd talk about port discomfort and side effects. But that gets boring pretty quickly even to cancer patients, so we'd also try to talk about current events, trips we had planned, and how hopeful we were. Science is always making progress, right?


I have often referred to Hawaii as my happy place. I think part of that stems from having lived there for a few years as a kid and having these incredible memories: of rolling in the waves, learning to boogie board, sandy hair after a day of swimming, camping on the beach (even if centipedes crawled up the outside of our tent), and climbing the intensely fragrant plumeria tree in our front yard to gather flowers for making leis.

Overlooking Hanauma Bay, circa 1982
My younger brother and me on Oahu, possibly the last time I was taller than him
In the spring of 2016, our family of three went to Kauai to spread Chris's parents ashes off the coast, as they had requested. They loved the aloha spirit, too. And Hawaii was still my happy place, but that was an admittedly bittersweet trip. Not only did it feel like Chris was saying a final good-bye to his mom and dad way too young in life, but I had just had my last infusion of chemo and would come home to have the scans and lung biopsy that turned my cancer story upside down.

About a week and a half ago, our family returned from another trip to Kauai. This one was planned as a weeklong celebration of my friend Julee's one-year cancerversary. Is there this much cancer in your stories, too?

How does she look so well-rested after a 7 a.m. hour-long hike??
And to most people who ask, I'll say this latest trip was magical and amazing, because it was and that's still what Hawaii means to me. I'll talk about taking surf lessons with Quinn, and the complete freedom and glee I felt standing up on that board after watching my 7-year-old son do the same. I'll describe our after-dinner walks in the dark down to the beach to visit the sea turtles who'd come ashore to rest for the night, and the night sky that was lit up with a billion and one stars. I'll say that the first few days were an adjustment because of Noelle's sleep schedule and the time change, and that next time we need to just go for longer -- obviously, the only solution is MORE time in paradise. All of that is true.

What I haven't told many people is that shortly after we landed on the 4th of July, I saw the news that TJ had passed away that morning. I immediately reached out to Patricia, but after so many losses, I still don't know what to say when a 33 year old dies.

"I'm so, so sorry. I love you. We just arrived in Hawaii, which will always remind me of the beginning of your love story. I can be there soon if you need me."

I sobbed in the Safeway parking lot in Lihue, as Quinn kept asking what was wrong from the back seat, bless his enormous heart. I drank too many mai tais that night. When Noelle woke up at 5 the next morning, I wrapped her to my chest, walked down to the water, and cried big tears next to a Hawaiian monk seal, an endangered species native to the islands and -- according to Wikipedia -- known to native Hawaiians as ╩╗Ilio-holo-i-ka-uaua, or "dog that runs in rough water." I marveled at the power of the ocean and felt a terrible tug in my heart.

I couldn't believe he was gone.

Because honestly? On the question of one of us dying, I always expected it would be me. For years, my prognosis was worse. I have no idea why I have survived and TJ (and dozens of other friends) have not. To bear witness? To advocate for more funding for research and rally for politicians who don't want to take our access to healthcare away? To remember that love and connection are risky but worth it because they are also everything?

If cancer and TJ have taught me anything, it's to find some greater purpose and live it without apology.

Here's to the dogs who run in rough water, to those among us dying too young, and too quickly. May they inspire us and remind us to live our best lives RIGHT THIS MINUTE.

Wednesday, July 18, 2018

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.