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.

Wednesday, June 21, 2017

Well Played, Universe

Exactly one year ago, I was lying in a PET scan machine three months after being taken off of the targeted chemotherapy I'd been on for almost three years. The next day, on the summer solstice, I received the news I shared here last October. You can go re-read it. I'll wait here and hope the link works as planned. 

I didn't think much could surprise us after what we've been through the last several years. Stage 4, metastatic breast cancer at 32 knocked the wind out of me. Being re-diagnosed with early-stage breast cancer and sarcoidosis made us feel like we were living in an episode of House. It took me nearly six months of therapy to be able to talk about it publicly. Talking about chemo-induced menopause and diarrhea had been easier.

Telling my cancer story at the Story Half Told launch in NYC, September 2015
Three months ago, the universe handed our family another earthquake: a very surprising positive pregnancy test. (When I say I'm good on surprises, the universe laughs. Well played, universe. Well played.) I had wanted this for so long, and mourned several times over because I figured it wouldn't happen again after all my body has endured. I knew I was lucky, though, and I think it's clear that I am intensely grateful for the boy wonder I do have. We had made peace with our family of three, but apparently Mother Nature had other plans.

So I reached out to no less than a half-dozen doctors (including friends who are doctors) in various fields about whether this was a good idea. Was my body healthy enough? Would the baby have 3 eyes? Will my cancer come back?

Every single one gave me the green light. An ultrasound at six weeks showed me the heartbeat and I sobbed into Chris's shoulder on the couch that night, still terrified about the potential risks or tough decisions we might have to make.

Tests at ten weeks said we were at low risk for chromosomal abnormalities and that it was a GIRL. I couldn't help it -- visions of the women's march and the sign I'd carried announcing "The Future Is Female" flashed through my mind.


Was it fair to bring another woman into this world at this ominous point in time? I just read The Handmaid's Tale. There is legislation brewing as we speak that will make this pregnancy just one more preexisting condition to add to my list.

Another test at fourteen weeks said we were unlikely to see neural tube defects. What about breast cancer? I thought to myself. Can we put an end to cancer before she has to worry about it? Can they confidently tell me she'll be okay? That I will? Would I really want to know otherwise?

And earlier this week, we had an early anatomy scan, the high-resolution ultrasound that checks that all major body parts are developing properly. She does not appear to have three eyes. She seems perfect, if a bit camera-shy.


I'm midway through week eighteen and definitely sporting a bump that no longer looks like I just ate too many burritos.

We are in the early stages of figuring out how to remodel our house to accommodate a baby, who is slated to join our family around mid-November, just in time for Thanksgiving. I am grateful, I am more fired up about social justice than ever, and I am scared about my capacity to love another being as much as I love Quinn. He tells me I just will, that my heart will grow into it.

Photo by the remarkable Pei Ketron for Story Half Told


Friday, May 26, 2017

I Am Still Screaming (Even if Not on My Blog)

With each one of these false starts, I feel like I owe you all an apology for being gone for so long. I haven't meant to disappear, and I haven't even given up on blogging, I don't think. My friend Sandi says that sometimes she closes her journal and moves on to another one, whether the pages are full or not. Sometimes, she's done with that chapter of her life and needs new pages -- and a new journal -- for whatever's next. I don't know if that's where I am with this blog, but I like her approach. Am I done with this chapter in my life? In the sense that I am no longer a full-time patient, yes. In the sense that I am fired up and trying to advocate for a better world for cancer patients and survivors, not even close.

So what's my excuse for being away for so long?


Well, there was the whole issue of teaching international law to actual students, which meant reading and dissecting case law and contextual background and news (SO MUCH NEWS) enough to be able to explain the materials in a mostly coherent way twice a week for the spring semester. That is done now except for some final grading, so we'll see how they -- and I -- did. We all did okay. Mad props to my husband for professor-ing full-time for more than seven years now. That shit is not easy. And I didn't even have to apply for grants.

Side note: Don't get me started on funding for science. I will point to the fact that it was 99 degrees here yesterday, 14 degrees above average, and it's STILL APRIL. See? I started this post ages ago. Now it is hotter and I am angrier. For example: WHAT THE FRESH HELL IS UP WITH THIS ADMINISTRATION'S BUDGET PROPOSAL? 

But what I'm most angry about this spring is the four vibrant, beautiful, young friends I've lost to metastatic breast cancer in the last couple of months, and how the issue of cancer death is only going to be exacerbated by this White House's policies toward healthcare and science (not to mention its general disdain for women).

In a super emotional state last week sometime in April, through uncontrollable sobs, I texted my friend Deborah to ask, "Why me? Why did I survive?" She wrote back exactly what I needed to hear: "As for your friends dying - I don't know why you're ok and they're not. And I don't know why you lived in a reality where you had mets and your friends did, too. Then you didn't have it but they still do and now you have to watch them all die of this thing you were going to die from...that's fucked up. I can say all the good things like how you can advocate for them and since you're not going to die, you can keep fighting for funds and research but really? It's just fucked up. You're going to relive this over and over and it's not fair. It's awful."

It is awful.

I look at Mandi's last post from the beach, or the posthumous entry by her husband (grab your tissues), and I hate that she didn't have more options. Breast cancer got into her spinal fluid and there was basically nothing left her doctors could do, even though they tried a number of drug combinations. I think of how she counseled ME through the uncertainties that arose with my diagnosis change last spring, before I'd told anyone else in the community, how she assured me even as she faced pain and drug failure after drug failure.

I look at Anna's beautiful video,



which I can hardly watch past the point where it shows her artwork that says, "but I have two small children" (5:02). But you should watch it. Watch as these women joke about setting up a dating profile for Anna's husband, or writing a letter, "to the future mother of your children." Too many children are losing their mothers. I remember my conversations with Anna about how hard it was to parent with metastatic cancer, but we just did our best to appreciate every exhausted moment, even when we felt like shit because of treatment. I remember how she walked me back from crazy-town when I thought a terrible headache meant brain mets. She had brain mets, and that wasn't what hers felt like, she promised.

I look at Louise's obituary, and think - she was only 42, which sounds at once so young and also so very old in the mets community I know, where most women are in their thirties and praying to see forty. Weez, as she was known, lived with mets for more than seven years. When she was still on Facebook, she cheered whenever I posted a "no evidence of disease" status.

I look at the tributes to Beth, and remember how we laughed at sharing the same birthday. I wasn't as close to her as some other women were, but I had so much respect for her calming, steadfast presence in the world of MBC advocacy. That's the thing about MBC advocates, though -- eventually, most of them die of the disease they're trying to end.

*****

In March, I went to Oakland to attend my FIRST Young Survival Coalition Summit. I'm part of YSC's 2017 class of RISE Advocates, which I'll write more about later, assuming I can find my focus this summer. I hadn't made it to a YSC Summit in the past because they always coincided with Quinn's birthday, which I wasn't willing to miss. This year, the summit was a weekend later, so I went. There is nothing quite like finally being able to hug a friend in person after knowing them online for years. But I realized I am still very much straddling two worlds, or trying to find my way in one as I no longer quite fit in another. I'm part of the "survivor" crowd now, though I don't know if I'll ever be comfortable calling myself that. I got a lanyard colored to indicate more than five years since my diagnosis. I did not get a metastatic-colored lanyard. But the majority of my friends fall into that group. They're the ones I joined for dinner.

Eight of the ten women in this photo live with metastatic breast cancer. Can you tell who? They are my tribe, even as I am no longer one of them. And even if it's not always through blogging, I will keep doing my part to be a voice for them.


Want to help? Please raise your voice to talk to your Senators over the next few days and weeks, to tell them to reject the terrible House legislation that would allow states to end protections for those of us with pre-existing conditions. How? I have my Senators' local and DC office phone numbers programmed into my phone. I call them regularly. I am polite, but make sure I relay my point. I don't always know if it's effective, so I also make a point to send the occasional letter. There are apps who will reach out for you, too. Whatever method you choose, please just get involved. My friends' lives are on the line, and I'm really tired of being angry.

Monday, March 13, 2017

Six

My Lovey,

A week ago you turned six. SIX. My incredulousness at your getting older never ceases.


Photo credits: Lara Agnew Photography
As I think I say every year, the passage of time is so strange. It’s now been more than a year -- since about a week before you turned five -- since my last chemo infusion, and I realize with an odd sadness that you may never remember how sick I once was. Will you recall how often we snuggled on the couch watching movies in the days after my infusions? Will you know how often I fell asleep with you at night after tucking you in because the steroids had worn off and I couldn’t keep my eyes open past 8 o’clock, and how the warmth and heft of your little body rooted me solidly to this world when I wasn’t sure how much more I could take? Do you know how powerful your love is?

And here we are, cancer and the fear it brought to our lives not such a tremendous cornerstone anymore. Do you feel the shift?

It has been a year of tremendous adjustments for all of us. 2016 brought some earthquakes to our world, but here we are, still standing. Watching the dust settle. Exhaling. Finding our footing on new ground.

Photo credit: Lara Agnew Photography
You started kindergarten and have learned to really read this year: all of the signs along the road as we’re driving, and books to me at night, which still makes me tear up with pride and astonishment that I’m here to see this unfold. 

You're riding your bike (without training wheels) to our neighbors' house to see if they can play for the entire afternoon, as you should be. You want to be a ninja and a policeman and an astronaut. You played your first season of flag football as a Seahawk, much to your dad’s chagrin. You are interested in trying everything -- though still wary of most vegetables. Karate, rock climbing, ice skating, Lego club, Spanish, your school’s Variety Show, skiing. We have always loved your zest for life.

Still, I have to reign you in a bit because, truthfully, I miss you. 







You are six, and underwear jokes are funny. "Mom! Look under there!" you exclaim. And if I'm caught off guard (or playing along), I'll respond, "Under where?" which makes you giggle every time.  "Haha -- gotcha!" you say. You make up games constantly: let's pretend the floor is hot lava; let’s play the “weird word” game in the car, where you make up a word and try to guess how it's spelled; here’s a game called Toyota collect, where we have to count the Toyotas we pass; this one's called shark attack, and we yell "shark attack" when we see a yellow car; let’s find the colors of the rainbow in order as we drive (purple is always the hardest); now 20 questions or “I spy.” Your creativity and boundless energy astound me.

You’ve lost two teeth and have been visited by the tooth fairy. She leaves you tiny notes reminding you not to eat too much sugar, that you have to take care of your adult teeth now because these are it for the rest of your life. Around the corner is Easter, and with it the Easter bunny, and you've started asking questions about what Easter means, and why in the world eggs and bunnies would have anything to do with Jesus rising from the dead. Rebirth, I try to explain.

Please stay here just a bit longer, in this time and place where you still run to greet me at the end of the school day, where you love and marvel at mud puddles, and still choose a favorite stuffed animal as your show-and-tell item when it's your week to be Star Student.

Six means one-third of the way to eighteen, and I’m not close to ready for it. Time is short, even when you've been given the miracle of more of it. But I can’t write this without acknowledging how flipping lucky I am to be here for any of it. I think I am the luckiest mom who ever was. 





The other day you asked me what an angel was, and I tried to explain that some people believe they're spirits who watch over and protect us. You looked promptly at me and said, "Mommy, you're my angel!" And just when I didn't think my heart could melt any more, you said, "And I'm yours." Yes, love, yes you are. You always have been.

Happy SIXTH birthday, buddy!

Love,
Mom

Friday, February 3, 2017

The End of the World As We Know It

I have quite clearly been at a loss for words these past few weeks. Well, I've had words, but most of them aren't fit to print. "WTF?!" doesn't exactly make for constructive dialogue.

As I transition out of my role of full-time cancer patient and into whatever comes next: survivor, I suppose, though that is still such a strange word for me; advocate, about which I hope to write more soon; and adjunct law professor teaching international law twice a week (yes, really), I'm still trying to find my footing in a post-MBC world, and now, also, in a post-factual one, too.

And while this is a breast cancer blog that's sometimes about parenting or research or even finances or sexuality or grief, I cannot ignore my past as a lawyer/lobbyist and the dire threat to healthcare -- and our constitution itself -- that now exists. So this may also become a blog about policy and politics, too, to some extent. Just a fair warning for my readers because I'm sure that not all of you share my voting record or worldview. I hope you'll stick around regardless. At the end of the day, we're all in this together. I welcome debate here (or in person!); just please keep it civil.

For those of us who are friends on Facebook or other social media, you might have seen my statement shortly after the election that Trump's win felt oddly similar to being diagnosed with cancer. The cold fear was familiar to me, as was the sense that I had just lost control and my innocence in one fell swoop.


Here's the deal: I am not a "snowflake," as some people are characterizing those of us expressing our sadness at what our country is facing: the potential loss of the rule of law and human rights, or respect for free speech and science. Our grief is warranted. I am no withering petal.

No one gets through nearly 5 years of cancer treatment without some deep resolve and fortitude.

My opposition to the new administration is not a partisan matter. I am a patriot. I studied history and the law, marveling at our founding fathers and the lasting power of our Constitution. I grew up in a military household where the Fourth of July was almost as important as Christmas. I can't really carry a tune (ask Chris), but I hummed along to Lee Greenwood's anthem with tears of pride in my eyes every summer.

This American "experiment" we've been involved in for the past 240 years? I want to see it endure. I believe in it, flaws and all.

One of my students asked me the other day whether I thought the new administration's actions were hurting our standing in the world, and if so, what we could do to correct this course. My answer was strangely similar to what I'd tell a newly diagnosed cancer patient, and at least one (conservative) author seems to agree with me.

I told her we need to continue to speak up for our beliefs and interests. I would tell a cancer patient she has to be her own best advocate. The protests and boycotts and what one friend tells me are hundreds of thousands of calls per hour to congressional phone lines are making a difference. We are being heard. It is an uphill climb, but I'd argue our lives and liberty are worth it.

Elliot Cohen writes:

[A]ll can dedicate themselves to restoring the qualities upon which this republic, like all republics depends: on reverence for the truth; on a sober patriotism grounded in duty, moderation, respect for law, commitment to tradition, knowledge of our history, and open-mindedness.

On the other end of the spectrum, all of this advocacy, just like being a patient, can be exhausting. It is SO important to engage in self-care. Get enough sleep, even if it means resorting to a tablet of Benadryl (note, I am NOT a doctor, and this is not meant to be medical advice). Exercise regularly. My guess is boxing classes will be filling up quickly as more and more of us feel the need to punch something. Eat plenty of vegetables, even when you feel nauseated. It is important to refuel yourself to get back into the arena, for this will be a long, drawn-out match.

We don't want to burn ourselves out. We have so much work to do. We have been knocked down (and I don't mean liberals, I mean our very democracy). We must stand up again and again and again, like the old Japanese proverb says. Ask any cancer patient.