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.

Resilient and Vulnerable and True (I Hope)

I'm writing now from a hotel room (a luxurious, thirtieth-floor hotel room, complete with a bathtub not sprinkled with plastic bath toys) in Chicago, where I landed early yesterday afternoon for a conference this weekend. Chris has approximately 45 weeks of field work and/or conferences this year, so I requested these few days to bask in the uninterrupted glory of a good night's sleep (or three).

Hello, beautiful city. Hello, beautiful healthcare advocates. I’m thrilled to be here for #HealtheVoices18 — kicking off bright and early tomorrow! ☀️ Follow along for updates! 🙋🏻‍♀️

A post shared by Jen Campisano (@jencampisano) on Apr 26, 2018 at 4:57pm PDT

Bless him, Chris is holding down the fort during a teacher walk-out that by some estimates resulted in the largest march on our state capitol in Arizona's history yesterday. Hey, legislators, just fund public education already. It's in our state constitution and you've already been sued many, many times on this.

But back to my hotel room. I am not here just for the fluffy bathrobes and overpriced room service.

HealtheVoices is a conference that supports healthcare advocates across a spectrum of disease communities, from cancer to HIV/AIDS to diabetes to mental health. What I love about this gathering is the reminder that we all face so many of the same struggles -- and often even side effects -- even across very, very different afflictions. It reminds me of our collective humanity, and gives me hope watching people doing good things for each other. As one speaker put it this morning, when we stand up for each other, we are unstoppable.

I've been to the HealtheVoices conference before, in 2015 by invitation and in 2016 as part of the conference's advisory panel. That year, I ended up in the emergency room at Northwestern Hospital because of chest pain shortly after the lung biopsy that changed my diagnosis (and my world, if I'm being honest). The chest pain was probably a mild panic attack, although I didn't know that at the time. I just didn't want to fly home if my lung was going to collapse mid-air.

Last year, I was newly pregnant and skipped the conference. This year, they asked me to sit on a panel for a session on resilience. Did you read my last post? I am feeling far, far less than resilient at this very moment along my path to wellness than I've felt in awhile, but I'm going to show up and give it my messy best. I still shake when I tell my story. I still don't know exactly where to start or how to frame the work I feel called to do. When I'm asked by other attendees what I advocate for, breast cancer seems like an incomplete answer. How much time do you have? I want to ask them.

Coincidentally, I just finished Brené Brown's Braving the Wilderness about what it means to truly belong, especially to belong to oneself. She wrote, "You will always belong anywhere you show up as yourself and talk about yourself and your work in a real way," which could be the tagline for HealtheVoices.

I highlighted more passages than I typically do in a book, but one of my favorites is when she writes about courage and vulnerability:

Most of the time we approach life with an armored front for two reasons: 1) We're not comfortable with emotions and we equate vulnerability with weakness, and/or 2) Our experiences of trauma have taught us that vulnerability is actually dangerous. 

Uh, she might be on to something with that second one there. She continues:

The definition of vulnerability is uncertainty, risk, and emotional exposure. But vulnerability is not weakness; it's our most accurate measure of courage. 

Here I go, to show up vulnerable and soft-bellied and as my truest self. I hope it looks like something resilient.

And just to be clear, Janssen Biotech paid for my travel to this conference, but all thoughts and opinions are my own.

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?