Thursday, April 18, 2019

Out of Hibernation


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 💖
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.

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 ʻIlio-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.

Thursday, June 21, 2018

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.


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.


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.

Thursday, May 10, 2018

Reflecting on HealtheVoices18

A couple of weekends ago, I went to Chicago to get some sleep in a hotel without middle-of-the-night baby feedings attend a conference supporting online health advocates. HealtheVoices is in its fourth year, and this was my third time attending. I skipped last year because Chris had a conference at the same time and I was newly pregnant and freaking out about that.

It's a conference that brings together advocates across several health conditions. More than forty different illnesses were represented this year. What that does is allow us all to find common ground, to share and learn from one another, and even drum up ways to collaborate. By gathering together, we realize that many of our symptoms, fears, and struggles are the same, whether we are cancer survivors or living with chronic pain or coping with an autoimmune disease (or several). It also reminds us to be kind, because you never know what another person has been through.

As I always said when I thought I had metastatic breast cancer (MBC), I didn't always look sick.

This is like a game of Where's Waldo?
This year's conference opened with breakout sessions for a few advocate groups. In our relatively small group of cancer survivors, I was especially floored by how many of us were diagnosed as young(ish) adults, whether with breast cancer, testicular cancer, or lymphoma. And this session -- where I met Ben and Justin and Racheli and Kathy -- kicked off a weekend where I was continually inspired, and if I'm being honest, a bit challenged to find my own road post-cancer.

Some of these people are doing wildly amazing things to support new patients and bring awareness to their communities, so there were a number of times when I wondered if I'm doing enough, and what my purpose even is in a post-MBC world (more on this later). But as speaker after speaker reminded us, if we are reaching just one person, we are making a difference. Related: it's not about likes or retweets (even if those do make us feel more useful).

We have affectionately captioned this one: two balls, no boobs...
The organizers asked me to sit on a panel about resilience and tell my story about coping with major stressors in my life. What? There've been one or two. I said yes, even if I'm not feeling my most resilient lately. A teething baby and looming CT scans and possible PTSD will do that to a person.

On Friday, I sat on the stage with another young(er) woman from Phoenix, Kate, who lives with epilepsy; John-Manuel, who is an author and journalist living with HIV; Kenzie, who made it so there wasn't a dry eye in the room as she spoke about choosing to stay in this world, even as a young twenty-something living with rheumatoid arthritis, Crohn's disease, and Addison's disease (when your adrenal glands aren't producing enough of certain hormones); and the refreshingly positive Hetlena, whose simple advice to "be mad for five minutes, then be done with it" stuck with me, even if I don't always follow that wisdom.

Apparently I chew my nails when I'm nervous...
Certain themes arose again and again. We are resilient because we are grateful for what we have, rather than dwelling on what we've lost. We all talked about finding purpose -- not that any of our illnesses are gifts, but choosing how we've responded to our diagnoses can give them meaning. And one after another, we talked about how the stories we tell ourselves -- and the world -- about our illnesses can shape our realities. My friend Sandi wrote an entire book about this theme. (You should read it.)

I participated in another break-out session on parenting through a chronic illness. We touched on feeling guilty for the days when we couldn't get off the couch (though my friend Brooke had a good point: she said she doesn't feel guilty for those crushing exhausted days, but rather the days when she actually felt well and still wasn't completely present for her son). We talked about how (and how much) to share with kids about our illnesses. We all cried. I'm not gonna lie, I could use this sort of group therapy on a weekly basis.

On the last day, I shared a bus ride to O'Hare with the keynote speaker (and fellow sarcoidosis-sufferer, though she has it much worse than I do), Karen Duffy. Yes, the former MTV VJ and bestselling author. We mostly talked about our sons and just a little about our experiences with sarcoidosis. We didn't talk about "Dumb and Dumber" at all.

I missed my kids a lot. Whenever I'm away, Quinn's voice on FaceTime seems so much smaller and younger to me (perhaps because I've only talked to adults for a few days?) and it reminds me to slow down and pay close attention to him when I'm home. This was my first time away from Noelle, and I was mostly fine until I held my friend Mariah's daughter.

Coming home from HealtheVoices was bittersweet. It is a marathon few days of networking and emoting and baring our souls. I caught up with old friends from previous years, and felt instant connections with new ones. I hope I'm lucky enough to get to participate again and again.

With the extraordinary Chrisa of The Mindstorm
Disclaimer: Janssen covered my travel expenses to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.ssen covered my travel expenses
to attend #HealtheVoices18. All thoughts and opinions expressed here are my own.