Monday, November 13, 2017

On Death + Healing + A Little Bit of Football

I haven't talked to many kids about death. But kids, I find, are generally equal parts curious and blunt. My six-year-old, Quinn, casually asked me last weekend: "What if my baby sister stays in your belly until my birthday, in March?"

"Then I'd be in some kind of record book," I said. "I promise she'll be here in the next couple of weeks."

"What if a mom was pregnant for 5,000 years?" he wanted to know. Then, quickly, "I guess then both the mom and baby would be dead by then."

In the abstract, death is a concept that isn't yet scary to him -- or wasn't, until very recently. He wants to know how old the oldest person on Earth is, why people can't live to be 600 years old, and very occasionally, he'll tell me he's worried we might need to move to another planet because ours is getting too hot. To be fair, we live in Phoenix, where it was still hovering around 100 degrees the week before Halloween. AND his dad is a climate scientist/geologist who studies the correlation between climate change and human evolution, so that could contribute.

Quinn is curious about our collective mortality, but death hasn't seemed imminent in his life (other than my bout with metastatic breast cancer, which he doesn't remember very well, and my mother-in-law's passing away more than two years ago -- also not a strong memory for him).

If you follow me on Instagram, you might have seen that Quinn had his first stitches three weeks ago. Because October wasn't awful enough already.
Chris was at a geology conference in Seattle, and Q and I were watching Monday Night Football. Quinn wants to be an NFL player when he grows up.

He loves everything about the game, and cheers for teams as wide-ranging as his flag football team the Patriots to the Seahawks because they're my team to the Cardinals because Arizona to the Eagles because his favorite color is green. Three weeks ago, Mack Hollins, a rookie wide receiver for the Philadelphia Eagles, caught his first career touchdown pass, and in Quinn's estimation, nailed his end zone celebration.

Quinn tried to recreate the dance on his knees, on our couch, and, in a rare moment for him, he lost his balance. In what seemed like slow motion, he fell, head-first, and smacked into a leather-covered ottoman storage cube, then landed head-first on the floor. I didn't think it would be that bad because the cubes are padded on top. But he hit the unpadded, stitched corner, and when I scooped him off the ground, his forehead was gaping open and blood soaked my t-shirt. While I quickly set him down and assured him he'd be okay (as I tried not to show him how terrified I was and ran to the kitchen for an ice-pack and a towel), he kept repeating through his tears, "I'm so scared, I don't want to die."

My heart felt like it was being twisted and wrung out like an old dishrag in that moment.

I promised him he wouldn't die. I called 911 and just a few minutes later, several firemen stood in our living room and assured me he would be fine but also that he'd need stitches. "Can you do them here?" I asked, naively. They don't offer that service, apparently. We went to the emergency room at Phoenix Children's, where several hours later, Quinn got five stitches.

I'm not sure at what point he calmed down -- though it came more quickly for him than me. I was still  sobbing about his head and the wrenching ache in my heart days later, always at night when the house was quiet and my brain started racing again. I am more okay now, though Quinn's words have been replaying in my head the past few days.

***

My friend Beth Caldwell died ten days ago. Her daughter is Quinn's age, give or take a few months. Beth's husband, J, has been posting updates (up until his FB account was blocked because of a troll). Their kids are having trouble sleeping. As someone who still snuggles with Quinn every night until he falls asleep (and lately, I'm falling asleep with him), I get it.

How can you assure children that there's nothing to be afraid of after dark when their world has just imploded?

I haven't known how to write about Beth, but at some point I figure I needed to, whether I know what to say or not. In the last ten days, as Beth's husband points out on Twitter, this country has lost another 1,130 women like Beth to metastatic breast cancer. 113 every damn day. In the last ten days, Beth's husband had to live through their fifteenth wedding anniversary without his lovely bride.

And while we in this community are all too sadly familiar with grieving and death and losing our friends, there are some people who are just different in their scope and impact and the vast vacuum of emptiness felt in their absence. Beth was one of those women, and even now, it is so hard for me to write about her in the past tense. I told her husband that she and I used to joke we wished we'd met in law school, or over bourbon -- anywhere but because of cancer. Stupid fucking cancer.

Yes, you've seen this photo before, but - regrettably - it's the only one I have with Beth. Note to self: take more photos.
I know I'm not the only one who feels this way about Beth. She was a friend to so many of us, and a fierce advocate who led by example. She was whip-smart, even when she thought she was at her worst. And as I advocate in the years to come, I will always ask: would this have helped Beth? Will it do more to keep the Kelly's, April's, Danya's, Dana's, Rebecca's, Jennie's, Nicole's and Kisha's in my life alive? In other words, does it live up to Beth's standards?

I don't know what else to do to carry the torch she lit.

***

I woke up at 5:30 this morning to our meowing cat scratching at our temporary bedroom door. Temporary since we are still in the throes of a remodel because... I don't know? Paint is more complicated than I could have imagined? Even without the hungry cat, I'm not sleeping well. I'm 39.5 weeks pregnant. Waking up forty-five times a night is nature's way of preparing you for the sleeplessness of a newborn, blah blah BLAH. Whatever. I just want to stop peeing every two hours (or every time I sneeze).

This morning, I read through the news and my Facebook feed. I noted that the forecast has us at 86 degrees today. I saw that Beth's husband's Facebook account has been suspended because some terrible person reported him for who knows what... Grieving too hard? And I don't know how to stop being angry.

But then Chris woke up and we had coffee together. And Quinn woke up and I remembered him singing "Hush Little Baby" to my belly last night, how my heart finally felt un-corkscrewed. There was no longer a tornado brewing in my chest. Instead, it swelled to the fullest it has felt in weeks. As the Grinch would say, it near tripled in size, and love poured down my cheeks.

***
Quinn's head is healing. There is a pinkish scar that extends for about an inch above his left eyebrow. I massage it gently a couple of times a day. He's no longer asking me about death. His flag football team has their playoffs this weekend, and baby-willing, I'll be there to cheer him on.

I wish some calendula or coconut oil and a weekend of football could heal every kid's pain and scars so easily.

Tuesday, October 31, 2017

What Are Breasts For?

As October winds down and we prepare for Halloween celebrations tonight, I thought I'd share some final thoughts on the month. And on breasts in particular.

***

The librarian at Quinn's school is a friend. She was his music teacher in preschool, and now I see her when I'm volunteering as garden mom or at PTA meetings. All of which to say that we're Facebook friends, as well as real-life friends, and we often get fired up about similar things. Yesterday a few weeks ago (because I'm spending all my energy right now on growing a human and also a remodel project to add a nursery so these unfinished posts get stuck here for a month), I saw a post on my friend the librarian's Facebook page regarding a book.

The book seems to be about talking to boys about puberty and other coming-of-age concerns. Another mom had seen this, was rightfully pissed, and was asking whether our librarian knew anything about this series or why the editors had been such dolts (I'm paraphrasing).

Here is a screenshot.
First - girls have breasts to make milk for babies? No. Women do. Girls shouldn't be having babies, and we shouldn't perpetuate that notion in a book aimed at BOYS. But that is hardly the only thing that makes this page offensive. The second reason for girls having breasts, according to Alex Frith for this Usbourne series, is "to make the girl look grown-up and attractive," and virtually all breasts can do this. 

Hold on while I pick the keyboard keys off my forehead. 

Am I the only one offended? Is it because my real breasts have been gone for nearly six years now? DO I NO LONGER LOOK GROWN-UP?!

I've been thinking so much about my breasts this month. Not only because it's October and WE ARE ALL AWARE OF BREAST CANCER ALREADY, but also because I'm going to have a baby sometime in the next few weeks. Side note: both Pinktober and this remodel have seemed to drag on FOREVER, which is weird because at the very same time, this pregnancy has zipped by in what seems like an instant. 

When Quinn was born, I breastfed from the start, right up until I had to begin chemo a few days before he was six months old. I loved that bonding time with my baby boy, his little face turned up to mine as he slurped and suckled. I was lucky. Nursing didn't hurt. My nipples weren't cracked or sore. I craved Blue Moon and was thirsty all the time, but nursing was relatively easy for me. It's part of why I knew it was bullshit when my doctor told me the lump in my right breast was mastitis. 



I was in awe of my body and what it was able to accomplish. I GREW a human! And then made food for him for HALF A YEAR! It blows my mind what women can do. 

And again, I'm growing a human! I have the fatigue and tell-tale waddle and peeing my pants every time I sneeze to prove it. 

But my breasts aren't tender as they prepare to feed my baby this time around. I no longer have nipples. Even my doctor occasionally forgets and asks me about breastfeeding, but short of me regrowing a boob like a lizard regrows its tail, nursing from my fake boobs is not going to happen.

I have heard that there is a possibility some milk will still come in in the days after I give birth, and I might have painful lumps in my armpits where a few milk ducts may remain. If that happens, I'm tempted to ask for more surgical drains to be placed -- like I had after my mastectomy -- to collect some of that liquid gold. Brilliant, right? I am also so grateful I was forewarned. That would be one terrifying surprise to wake up to, a whole bunch of painful lumps in my armpits after five years of thinking I was going to die of cancer.

I've had some wonderfully generous women step forward to offer me their extra breast milk, and the hospital has assured me our baby will have breast milk while we're at the hospital. Also, while I know "breast is best" when it comes to feeding newborns, plenty of babies do just fine on formula. Still, it saddens me to my core that I won't be able to feed this baby girl the way I was able to feed Quinn. 

On the other hand: no excuses, Chris. Those middle-of-the-night wake-ups are FAIR GAME for both of us. Mama just might get some sleep this time around. 

***

Beyond my own breasts, October has been full of the usual tired pink crap, though I have a lot of adorable pink stuff coming into my life right now so I can't totally hate on the color itself.

Yesterday, my dad sent me an article about the frivolity of the pink culture that emerges every October, even as it is meant to say to us with or beyond breast cancer that we are celebrated and supported. The whole article is worth reading, but two lines in particular struck me:

"The association of femininity and breast cancer is pernicious, because it genders the disease, meaning that a diagnosis of breast cancer marks patients as women first, people second. It implies that our womanliness is diseased, not our bodies."

Like the article's author, I didn't initially associate my diagnosis and the ensuing surgeries (and chemically-induced menopause, and hair loss, and days on the toilet post-chemo, et cetera, et cetera...) with a loss of my womanhood, though as time went on, there were certainly periods when I felt less than feminine. Instead, like most people facing CANCER, I was worried about my life. Thinking I was metastatic for years didn't help, since stage 4 is the only stage of the disease that kills.

Being surrounded by the color of Barbie dolls and bubble gum doesn't feel helpful. I am so thankful for black, purple, and orange today. And chocolate.

As you all know, I have lost a LOT of dear friends to breast cancer. Chris lost his dad to pancreatic cancer. My dear friend and fierce advocate Beth is nearing the end of her life now, which is devastating our MBC community and ripping a hole in her young family.

This, I think, is the biggest rub when it comes to Pinktober: it's not about our breasts.

They might be fun for a bit or serve a very special purpose for moms who are able to nurse when they're healthy, but when our lives are on the line (and they are -- 113 American women STILL die of breast cancer every damn day), our breasts are the last thing we're worrying about. And they definitely aren't what defines us as women -- healthy or not.

Monday, October 2, 2017

Reclaiming October

In case you missed it, October is right around the corner is here. (One of these days, I may sit down and write a whole post at once, but that day is not today.) It's even feeling like fall (i.e., below 100 degrees) here in Phoenix. Break out the freaking Uggs and pumpkin spice lattes already.

September has been was a whirlwind, though luckily in Arizona, not a hurricane. Please go click that link to help if you can.

Over Labor Day weekend, I went to Spokane to celebrate my grandmother turning 80; I had a birthday, too; I walked more than I probably should have at 7 months pregnant in another Avon 39 walk; my mom and a few dear friends flew in from out of town while some phenomenal women here threw me a baby shower, where I realized just how much PINK is about to come into my life, whether I'm ready for it or not; and I'm still managing a remodel so we have a place to put this little child when she arrives in the world. Since windows and floors are on backorder until mid-October, my god I hope she doesn't come early.

My dad, me, my 80-year-old grandma, and my "little" brother. Life goals now include living until I'm 80, and looking half this good doing it.
Team Booby & the Beast 2017.
We've raised a lot of money.
These women spoiled me rotten and my heart is so full.
My stunning mama & me. We felt all the emotions.
So when I say October kind of snuck up on me, it's because I've been really, really distracted loved and celebrated over here. I've missed you guys, but at the end of the day, I can barely keep my eyes open to catch up on what madness our Tweeter-in-Chief has been up to, let alone put thoughts together here.

But with October I feel an extra responsibility to speak up. My friend Beth is struggling to keep her platelets high enough for whole brain radiation every day so she can have a bit more time with her two kids and her husband, J. Knowing Beth, also so she can yell at Congress advocate to get more research dollars funneled toward metastatic breast cancer so moms (and others) can stop dying of this disease by the thousands. On that note, if you're able, please donate blood -- especially important given the tragedy in Las Vegas today.

I walk the Avon Walk every year, but I struggle with the pink-ness of it all. With the "save the ta-tas" slogans and "free breast exams" signs held by men along the route, to which I want to scream, "Sure, take a look at these scarred and purple, cold and numb ones, you disease-sexualizing ass." And then I wonder whether my own blog (this one right here!) is part of the problem with Booby in its name. Am I also a disease-sexualizing ass?

In the Avon walks I also always see a teenager or two walking for their deceased mom or a man honoring his late wife or a woman in the midst of treatment, bald and reminding me that DAMN, WOMEN ARE STRONG.


At the end of the day, I walk because of Avon's mission to provide for both research and support for underserved communities. Because they lift up those at the margins who would be further marginalized by the bad policies our government seems to threaten on a daily basis. Because women of color -- particularly black women -- fare far worse than white women do when it comes to breast cancer outcomes, and I believe organizations like Avon can make a difference when it comes to these disparities. I was so moved by the speaker they chose at this year's walk, I wept as she spoke about her Stage 4 diagnosis that so closely matched what my story used to be. Her reasons for walking are worth hearing.

And now I also walk because I'm about to have a little girl, and while men can and do get breast cancer, it is primarily a disease affecting women's bodies. IS THIS WHY WE DON'T HAVE A CURE? If testicular cancer killed 40,000 men a year (it kills around 400), would we have this problem solved?

***

Quinn had "pink day" at his school last Friday, presumably to mark the (near) beginning of October. When I asked him if anyone had talked about breast cancer at school, he said, "No." Then added, "Well, let me put it this way. I didn't hear anyone talking about it." Later, I realized it's probably because they don't want to use the word breast at an elementary school.

On the way to school, I had asked Quinn if he ever talks about me having had breast cancer. He does not. "I don't even remember it!" he tells me, as if I'm ridiculous for asking. Oh, the sass of a six-year-old. And so I dropped him off looking like this, then cried a good portion of the car ride home.


I cried because I'm pregnant, partly, but also because something that was such an enormous weight for our family is but a blip in this little guy's mind. Because if all continues to go well (knock on so much fucking wood), his sister won't have experienced my cancer at all. I cried because we are not the norm; most families do not get a reprieve from metastatic breast cancer unless you count death. Because we can do better -- in so many ways -- as a country.

Please think of all that as we go into this "awareness" month. Please donate responsibly. Please learn about the devastation of metastatic breast cancer. Please understand this disease is about so much more than saving some tatas or the color pink, unless you're six and get to dye your hair fuchsia for the first time.

Friday, August 25, 2017

The Darkness is Only Ever Temporary

Just when I think I've sorted through all of my emotions about my cancer experience, a song comes on Pandora and I ugly cry in front of my six-year-old. And it's a song from Twilight, no less:


But it's also a song Quinn and I danced to at a wedding when I was still in the throes of chemo and scared out of my mind. Hearing it brought me immediately back to that time, and my emotions erupted before I knew what had hit me.

This song interrupted our Scrabble game last week, because that's what we do now, when he's not asking me who will run on the Democratic ticket in 2020 or reading Harry Potter to me or trying to listen to his baby sister's heartbeat through my belly. So much has changed in the last eighteen months, especially, and words often escape me when I'm trying to reflect on it all. I did think I was past the ugly tears.


Clearly, a favorite activity of ours.
This past Saturday marked six years since my diagnosis. Six years of terror, relief, anxiety, grief, hope, and far too much chemo to count. Five years of wondering whether I would live long enough for this little wonder child of mine to remember me. Four (and a half) years receiving chemotherapy, an infusion at least every three weeks. Three years writing a memoir about the whole experience. Two years in chemically-induced menopause. One year since everything changed.

But who's counting?

Last Saturday also happened to be the day ushering me into my third trimester of this pregnancy. I have so many mixed emotions about this particular cancerversary milestone. Six years is obviously something to celebrate, but so is every day. So is a new life growing inside of me, rolling and kicking and hiccuping almost as much as Quinn did in utero. And while I celebrate my own milestones, I am still so angry that so many of my friends are facing this stupid disease. 

Last week, one of my closest friends had a bilateral mastectomy because they found what appears to be early-stage cancer in her left breast two days before her 37th birthday. I naively thought I'd taken one for the team, so to speak, with my group of friends, and that no one else in my immediate circle would have to deal with this shit-storm until we were all at least post-menopausal. I don't know why my brain tries to play tricks on me like that. I should know by now that is not how cancer works. 

I am mad that it is good news when another of my friends, Beth, only has to contend with lung mets that make her cough so hard she vomits and brain mets that send her into seizures. It is good news because at least she is not facing hospice right this minute. At least we have her voice and her brilliant advocacy efforts for a bit longer. And I celebrate because I got to hug her when I was in Seattle last month.


I am terrified about when the other shoe is going to drop, for me, for Beth, for so many of my friends. I worry that I got out of this too unscathed, despite my scars, my lack of breasts, my lack of eyebrows. So I celebrate, yes, but I also cry loud, body-rocking sobs in front of my six-year-old every once in awhile. 

Then a phenomenon like the eclipse occurs, and we pulled Quinn out of school to make a pinhole cereal box viewer and watch the events from a lawn at ASU. The whole country, it seemed, came outside to watch, and I am reminded that the darkness in our lives is only ever temporary. That these moments are magical, and worth celebrating. Here's to the light.


A post shared by Jen Campisano (@jencampisano) on

Friday, July 7, 2017

How to Talk to Congress

I am way out of practice when it comes to trekking in heels all over the unforgiving, marble halls of Congress. When I went to DC last week, I thought I was being sensible with 2-inch pumps instead of the stilettos I wore in my twenties. I was wrong. My feet are still healing from the ensuing blisters.

Was it worth it? To the extent it meant getting in front of legislative staff for my Senators and telling them my story -- absolutely. I'm not sure if I changed any minds, but here's what I can report and some advice for talking to your own Senators, whether you can make it to DC or not. 

Here I am after meeting with Helen Heiden, legislative assistant for Sen. Jeff Flake (R-AZ). 


I realize I look slightly annoyed. Some of that may have been my sore feet, but it's also the fact that Senator Flake has not said one way or another how he'll vote on the proposed replacement bill for the Affordable Care Act. This legislation, called the Better Care Reconciliation Act (BCRA for short), will gut Medicaid spending by nearly $800 BILLION, allow states to opt out of the requirement that insurance companies include essential health benefits (EHBs) in their plans, and give massive tax cuts to the wealthiest people in this country. It is hardly a healthcare bill.

For Arizona alone, the proposed legislation would cost more than $7 billion over the next ten years. More than 400,000 Arizonans would lose coverage. We are a state that expanded Medicaid services under the Affordable Care Act, and it has been a success story. As Sen. McCain's staffer put it to me, "We don't want Medicaid to change in Arizona! Enrollment is up, and costs are down. It's exactly what we want to see." Even our governor, Republican Doug Ducey, has spoken out against the current draft of the Senate legislation.

Over this July 4th recess period, new proposals to amend the BCRA have emerged, including an amendment by Texas Senator Ted Cruz that would strip the few remaining protections for those of us with pre-existing conditions. This proposal makes the legislation even worse for the estimated 16 million cancer survivors in this country, not to mention all of the people with other conditions -- such as diabetes, asthma, high blood pressure, anxiety, and the like -- who would no longer be eligible for affordable care. The Cruz Amendment sounds dreadful, but has been hailed by a few more conservative senators as a requirement for moving this legislation forward.

So what can you do to help stop this? How can you talk to your Senators about this legislation?
  • Call. I have my own senators' DC and local numbers programmed into my phone, and make a point to call and talk to a staffer every day. You can also call 844-257-6227 to be connected to the senators in your state.
  • Write letters. 
  • In any case: identify yourself as a constituent. Be polite, be brief, but make sure to share your personal story about why gutting Medicaid, or defunding Planned Parenthood, or stripping protections for pre-existing conditions or essential health benefits is bad for you and your family.
  • If you can't think of how this affects you personally, feel free to share my story. Or my friend Danya's, who also lives here in Phoenix. 

After my meeting with McCain's staffer last week, I pressed the button for the elevator, and out walked Senator McCain himself. I introduced myself, and said I was in town from Phoenix to talk to his staff about my experience as a cancer survivor. "I'm one, too," he responded as he shook my hand. "I know, sir," I said, then explained to him that I hoped he'd continue doing what's best for Arizona and voting against legislation that's not good for cancer survivors or our state.

And if your senators are opposed to this legislation? Please still call them and share your stories. They need to hear appreciation for their stances, and need to know why this matters so very much.