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.

Friday, April 27, 2018

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).


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.

Friday, April 20, 2018

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?

Friday, March 30, 2018

Rules for Talking to Kids about Cancer, Even When the Word ‘Breast’ is Involved

This post is sponsored by Celgene Corporation to review and share information about a new app to help children understand their mother’s breast cancer diagnosis called The Magic Tree. All opinions and thoughts are my own.

How many times have I written in this space about my struggles to come up with the right words to talk to Quinn about cancer? A dozen? Fifty? Do those words even exist? Someday, I will open up to him about the extent of what we thought we were going through and about the trauma we did actually endure. He knows bits and pieces. Someday, I will tell him everything.

He is old enough now to be embarrassed when I talk about breast cancer with others around him. He whispered, “Mom, can you please stop?” when I was talking about the last few years with a new friend – the mom of one of his friends – recently. “Is it because of the word breast?” I asked him. “No, it’s just embarrassing,” he said in the way that kids eventually do about their parents’ actions and stories, and I wonder if he knows what embarrassing really means. But, he is already rolling his eyes at me here and there, so I think that he does. In any case, it makes him uncomfortable to hear me retell my cancer story, at least where someone else, like his friends, might overhear.

Wait until he finds out about this blog.

Navigating cancer treatments with kids at home, and more importantly, figuring out how to keep discussions with them (or conversations when they’re in earshot) age-appropriate is a tricky business. Is a precocious 3-year-old ready for the same information as a more mature and worldly 7-year-old? And, what I always struggled with when I was in treatment and thought my disease was terminal, how do you maintain your child’s innocence and tell him or her you might be dying?

I still don’t know all of the answers about talking to kids about cancer or death, but I have a few.
  1. What rang true again and again in our family was share age appropriate truth, but don’t overshare. 
    • a.  For example, when I was in treatment, Quinn was very young. When he was a toddler, I told him mommy was sick and needed medicine to make her better. But I did not tell him I might die of my sickness. It wasn’t imminent, and I didn’t feel the need to scare him more than necessary. 
  2. Only answer their specific questions. 
    • a.  When Quinn wanted to know why I was losing my hair, I told him the medicine was hurting the cancer inside me, but also sometimes hurt my regular cells, including my hair.
  3. Related: be careful with your language. I didn’t expand to say how terrible I felt or use the word “killing” to explain how chemo was working.
I read to him from pamphlets I picked up at the hospital or books about his love being my best medicine. What all of these lacked, though, was what happened if mommy didn’t get better. I kept that dark knowledge to myself, and – as I’ve documented again and again – cried next to him after the lights went out.

What I wish I’d had in my toolbox is a more interactive and educational way to discuss cancer with Quinn. And now that he doesn’t want to hear about it, I do. Celgene has developed a new app, The Magic Tree, with short videos, a resource library for parents and cooperative games that earn decorations for the in-app tree. You can find links to download it on their web site http://magictreebreastcancer.com.

Quinn is a big fan of the games. One seems rooted in curling, the winter sport that – in our household – was a highlight of the recent Olympics. We played this game on a recent car trip giggling as we tried to push each other’s coins off a floating, spinning slice of tree trunk that sometimes has frogs on it who get in the way. “Silly frogs!” we joked. This cooperative game comes under the “Is It My Fault?” section, and I thought it was a brilliant idea to have something where parent and child can play together just after a video explaining it is absolutely not the child’s fault his mom got cancer.


There is a lot of wonderful animation that will appeal to kids as they learn about chemotherapy, biopsies, baldness, radiation and side effects in a non-scary way. It offers prompts for kids to talk about their feelings or any questions they might have with their parents or other family members. It does not leave out metastases, but keeps the discussion of it short and matter-of-fact. Videos are all around two minutes long, so will hold this age group’s attention span.



The app is aimed at children aged 5-8, so it would have probably missed the mark when Quinn was a toddler and could have benefited from a tool like this. I also noticed only traditional nuclear families are pictured, and it is only aimed at moms who get breast cancer (despite the fact that, while rare, men get breast cancer, too).

Even though I’m not in treatment for cancer anymore, I’m going to keep using The Magic Tree with Quinn to prompt our discussions of cancer, to help us both process what our family went through.

Thursday, March 29, 2018

Seven

Dear Quinn-Love,

Earlier this month, you turned seven, and somehow for the first time, it wasn't bittersweet for me to see another milestone pass. When you woke up and gleefully announced, "I'm seven!" I celebrated along with you and happily made chocolate chip pancakes for breakfast. Finally, I no longer wonder if this might be my last birthday with you. The fear of cancer isn't as ever-present as it was for so long, though dammit if I don't have to be terrified of gun violence while you're at school now.


I asked if you’d miss being six and you said, “No,” but then quickly added, “well, maybe a little because it’s the year I became a brother.” Our lives got flipped upside down AGAIN this last year, but you couldn't have been happier to learn you'd be getting a sibling. "This is the best gift EVER!" you exclaimed when we told you over pink cupcakes. And because it's you, you actually meant the baby growing inside of me, though you were excited about the cupcakes, too. 




Watching you become a big brother has filled my heart more than I ever thought possible. You ask at least three times a day to hold your sister, and you play games like "I spy" with her in the car, making up what she might be spying based on what you've learned about how far she might be able to see.

“I’m proud of you,” I reminded you the other night.

“But I’m even more proud of you,” you said, and then added: “Even though you don’t do anything, really.”

Oh, child. I want to rage against that statement but I am too exhausted. And also it makes me laugh. I hope someday you know I've done everything I can to make your childhood as well-adjusted as possible, despite getting off to a rocky and terrifying start.







“Let’s be penguins,” you said to me as I laid down next to you a few weeks ago. “What?” I smiled. “They snuggle to keep each other warm,” you explained. And so we snuggled because it was an unusually cool winter in Phoenix and because I will always love lying down next to you listening to your thoughts, listening to you breathe. I am as reluctant to give that up as you are to give up your iPad when you're watching the Best All Time Football Plays on kids' YouTube.

It seems as if you are either watching (or playing) sports or reading all the time now. It's March, and you've embraced everything about basketball finals, calling out favored teams and star players like you've followed these games for years. I swear, you could have a career as a sports announcer right now. The other day, you asked, "Mom, what does a person do if they don't get drafted by the NFL?"

"Whatever else they want, buddy. You could be a scientist, a teacher, an artist..." I started to explain.

"Well, I guess I better get drafted because I have no idea what else I'd want to do!" you replied.

"Honey, you're seven. You have a long time to figure it out," I tried.

"I just hope I get drafted by a team I like," you continued.

"Me, too, kiddo," I conceded.

We read a bit together at night — right now, A Wrinkle in Time or the Captain Underpants series. You're devouring these chapter books, and I love seeing you get lost in these fictional worlds.


As I remind you it's lights out at night, I tell you I love you more than anything.

“I love you even more than that,” you respond.

“I don’t think that’s possible,” I say.

“But it is...” you chime.

And if it seems like this is all too sappy to be true, that’s only because someone hasn’t met you yet. You are all heart, my sweet boy.

Don’t get me wrong, you’re also stubborn about trying new foods, clingy at bedtime, and slightly over-the-top pouty when you lose at a board game. But I still think you’re perfect.

To which I'm sure you'd say, "Nobody's perfect, mom."

I won't concede on this one.

I love you, Quinn-Bug. Happy (belated) seventh birthday!

Love,
Mom

Monday, January 29, 2018

Abundance

Last weekend marked six years since my bilateral mastectomy. I still remember waking up from surgery feeling like I'd done a thousand push-ups, like an elephant was sitting on my chest, like a hole had been carved where fullness once had been. I remember tightness and pressure and emptiness more than pain. I remember being terrified to peek under the bandages. I remember feeling numb. Feeling devastated. Feeling relieved (because, I thought, maybe I was done with this disease. Spoiler: I wasn’t.)

***

If you’ve been with me here long enough, you’ll recall there was an outpouring of support when I was diagnosed with cancer more than six years ago. Of course there was. People, I still believe, are at their core generous and kind and wanting to help in a crisis (or when miracles happen, too) . There were meals delivered and organized for months, and I still crave my sister-in-law Tracee’s stuffed shells — which is saying a lot considering my memory of them is tied to recovering from chemo. Friends and family dropped in to babysit baby Quinn, sometimes dropping everything on a moment’s notice just so I could lie in the fetal position on my couch, trying not to vomit, memorizing the pattern in the charcoal fabric. Other friends flew in for cross-country visits, and then there were those special women who cut off and donated their hair to make the wig I wore for all of 2012 and a good part of 2013. I was blown away by all of it, by all of them.

And then four -- ha! I was feeling ambitious about getting this post out -- ten weeks ago now, I gave birth to a baby girl. The magic of that in itself is for another post, probably after I’ve gotten more than four hours’ sleep in a row. But in my wildest dreams, I never imagined this kind of miracle could be possible after my diagnosis, after two years in chemically-induced menopause, after having my breasts removed that January six years ago. Our friends and colleagues have again swooped in to lift us up, to help us create a nest for our baby girl, to keep our older child entertained, to give us love and food and diapers in almost equal measure.

You'd be weeping on a daily basis, too.   





We named her Noelle. We think she's perfect.

Also? These photos are everything. My talented, beautiful friend Danya offered this photoshoot to me as a gift at my baby shower. I can't stop staring at them.

And you know how I met Danya? Stupid, stupid cancer. She read my blog, realized we lived near each other and have boys about the same age, and after months of intermittent messaging, one night we randomly sat next to each other at a pizza restaurant in my neighborhood and finally made solid plans to hang out. Our boys hit it off immediately, and so did we.

Check out her widely-shared video telling her story about being diagnosed with metastatic breast cancer in an effort to save the Affordable Care Act last summer. Thankfully, she's doing well right now and we are overdue for a champagne toast to celebrate both of our recent clean scans.

***

Even before Noelle arrived, my friends Jenn and Christine rushed over with breakfast one Sunday morning to help me launder baby clothes and set up the nursery when I thought I was going into labor two weeks ahead of schedule. Turns out I’d just peed my pants a little, and I will always blame it on: I was carrying low and Noelle's head was pressed into my bladder for weeks on end. The silver lining was that I finally got my hospital bag packed and figured out where in the house the newborn diapers had been stashed during our construction of the nursery.

Chris's colleagues gave us a hand-me-down rocking chair, bassinet, baby carriers, and an infant bathtub. Other mom friends passed down their little girls’ gently used clothing. A pediatrician friend pulled together a sampling of baby meds and ointments we might need in the coming months.

But far and away the thing that bowls me over day after day (and night after night) is the donated breast milk we’ve been able to feed our little girl. A friend with a 4-month-old gave me a few bags of extra milk; a couple of women who read my story in Facebook groups sent a few hundred ounces from Chicago, North Carolina, and Texas; another breast cancer survivor mom put me in touch with one of her former donors who passed along 50 bags worth of frozen pumped milk; and my pediatrician friend secured a couple of other local donors for us. The hospital where I delivered gave us donor breast milk while we were there and a few bags to take home with us.

Because of the infinite generosity of moms and their hours of pumping (so that women like me can feed our babies what's best for them), for six weeks my daughter’s primary source of food was breastmilk. Another box arrived from my college friend Katie today, and so baby girl will have another immunity boost, right in the heart of flu season.

A couple of times in the early weeks, when baby girl would turn her head into my chest, seeking food from me and my absent breasts, I wept. I felt inadequate. I cried to Chris, "I can't give her what she needs," which is ridiculous because we can still afford formula. But my hormones were running amok and a part of me will always carry some guilt that my body did this -- did cancer -- to itself.

My occasional feeling sorry for myself (and my daughter) notwithstanding, we have been abundantly fortunate. (Understatement of forever.) This village of women in my life, this band of mothers, has collectively pumped for hours upon hours and generously passed along their liquid gold so that my baby can sleep better, have fewer allergies, and maybe even avoid many illnesses. Perhaps between that and some Congressionally-funded research, she won't have to worry about breast cancer in her lifetime. One can hope. The future is female.

For now, we are mesmerized, in awe of our new family member, and beyond grateful for the abundance this community gives to us.