Finding the Beauty

Unless you follow a certain segment of Twitter users, you may have missed the uproar that occurred last week following a set of articles about how a woman, Lisa Adams, is treating and tweeting about her Stage 4 breast cancer. The first article, published in The Guardian and written by Emma Keller, has been taken down (but cached here) while the publication investigates allegations that the author used quotes taken from conversations with Lisa without Lisa's permission. Journalistic fail number one. 

The gist of the article is that Lisa is over-sharing on social media. (Isn't that what the "unfollow" button is for?) I've been a follower of Lisa's for awhile, long enough to remember when her cancer metastasized after more than five years' dormancy. So she hasn't been in "decline" for seven years as Emma Keller incorrectly observed. Lisa isn't even "dying out loud," as Keller asserts (journalistic fails nos. 2 & 3, at least), although the last month has not been easy for Lisa, who has spent most of it in a hospital receiving radiation treatments and working with her medical team to figure out the next course of treatment for her cancer.

That's what we stage four patients do--scan, treat, rescan, repeat. 

I am lucky. Right now (and since November) I have what's called no evidence of disease. But I still receive chemo every three weeks, still have scans every three months, still live with the fear every. single. day. that this cancer could change its course, figure out a chink in my chemo's armor, and wreak havoc on my body, my life. Still, I would not yet be dying. I--and Lisa--have incurable cancer. But we are very much living with our disease.

The second article was an editorial in the New York Times, written by (wait for it) Emma Keller's husband, Bill Keller, less than a week after Emma's article in The Guardian. Lots of us in the blogosphere are asking and none of us are quite sure why this couple chose Ms. Adams to gang up on. Mr. Keller is a former executive editor of the Times, and certainly must realize the weight and reach and influence of his space in that publication. He chose to be an ass, anyway.

He focused his questions not on whether Lisa was sharing too much (although he questioned that, too) but on whether she was grasping at straws to keep her alive when she should instead (I'm paraphrasing here, but barely) do the graceful thing and just die, already. 

The Twitter-verse and blogosphere erupted with anger at the Kellers' collective lack of humanity, and rightfully so. Lots of people have written very thoughtfully about how uncouth the Keller articles were, and those posts are worth reading. As is Lisa Adams' blog and Twitter feed, if you're up for it.

Not to beat a dead horse, but I do want to comment on an idea that both Bill and Emma Keller failed to entertain: that why Lisa Adams writes--why any of us with cancer write--has nothing to do with them. I'm speaking for a lot of people, now, so I want to tread carefully, but I think most of us write because, as my dear friend Sandi knows, writing is healing. Sure, we adore our audiences, but we write because it is therapeutic for ourselves. 

We write to share our experiences, to tell our stories, to maybe make a difference, to educate, to express part of the ever-fluctuating landscape of emotions that comes with a cancer diagnosis, to offer hope, to heal. In writing, we find peace/solace/beauty/comfort/life. We find life. And then we share those things, in the hopes that you, too, will see them. 

I was livid about what Emma and Bill Keller wrote, but if I'm going to find a silver lining, the reaction to their articles has shed light on what it means to live with--and write about--metastatic breast cancer. As Lisa would say, I'm trying to find the beauty.

What a Difference a Year Makes...

One year ago I had my ninth and last (knock on wood) Taxotere/Perjeta/Herceptin infusion, my 15th chemo chemo. Let me clarify that I still get chemo, it is just 180 degrees different than what I used to get. Meaning, my nails aren't about to fall off and I'm no longer in chemically-induced menopause and my hair is growing. I can hardly imagine the strength of the poison my body has endured. But oh holy hell what a difference a year makes.

Here's me sporting nearly an identical haircut to my oldest brother, Tim, last February -- just two and a half weeks after finishing chemo chemo and about a week after receiving the news that I could take a break from it because my scan had been clean.

I was so relieved, and so tired. Also, my arm was broken, so I was so in pain, too. But mostly, I was relieved. And happy.

Monday this week, I had chemo again, although I've lost track of what number this is. It's the one I started at the end of May, the targeted treatment Kadcyla. It's like the smart bomb of chemos, and -- so far -- it is working remarkably well for me. I am still tired, but not in the crushing, can't-take-this-anymore way I was last year at this time.

I should revise that. I am fucking beat this week, but that is in large part because chemo coincided with me catching what my friend Shelby refers to as the daycare ebola. I am so hopped up on Sudafed and cough suppressants and sinus headache meds right now, it sort of took me by surprise when I also had to take an anti-nausea pill this evening, but my incessant coughing is not helping settle my post-chemo stomach. I can only imagine the cesspool of pills sloshing around in there right now, but somehow the combination seems to be working. For now. My poor liver.

Anyway, I was going to post a photo of me one-year post chemo chemo, but no amount of good lighting was going to fix what was happening with my face today. Plus, I couldn't stop sneezing. No joke, I went to put sunglasses on to take Quinn to swimming this afternoon, and sneezed so hard, it shook the glasses off my face. Somehow, they ended up right in the line of fire. Yeah, too much. You can imagine the rest. Sorry.

So instead, here's me about a week before Christmas. I'm sure Chris will laugh at my selfie face, and I know it's not the best, but I see so much progress compared to last year at this time. And I'm not just talking about the length of my hair or the (relative) fullness of my eyebrows. I see peace and calm and health. Can't ask for much more than that, can I?

Just Keep Swimming

Quinn has become a big fan of Finding Nemo, even though I'm pretty sure he doesn't fully understand the story line (probably a good thing). He loves watching the turtles, the fishies, and even the sharks. This was my Facebook status update on January 7th. 

I have alluded to Quinn's swimming lessons here before, but not really gone into much detail about one of my favorite parts of our week. There's no particular reason for the omission except this time of ours didn't seem sufficiently related to cancer for me to share it here. Then, last week, we were back to swim lessons after a two-week holiday hiatus, and I knew I could no longer keep the pure joy that my son derives from the water to myself; I had to share it with you all, cancer-relevance or not. 

This video is from November. He does a lot more actual swimming now, but note his lack of fear or hesitation. Also, the pink goggles, which were his choice. Maybe it's just me, but I could watch this over and over and over again. It just doesn't get old. 

Quinn Swimming from Jennifer Campisano on Vimeo.

The swimming lessons began as a gift from Chris' Aunt Kathie for Quinn's second birthday last March. Due to my swap-out surgery and complications from that, though, we didn't start them until around Memorial Day. For several months, Quinn screamed and fought me at every turn for the thirty-minute sessions, to the point where I strained my damn wrist trying to keep him from drowning. I figured it just wasn't meant to be, my son and the water. So much for him being a Pisces, I figured.

Then, toward the end of September, something clicked, and suddenly I couldn't keep him from going under. "We've created a monster," his instructor said to me, looking at me like "Who is this kid?" Now, our biggest challenge is getting Quinn to follow instructions. He just wants to swim on his own terms, whether he actually knows what he's doing or not.

Every Tuesday afternoon, I take Quinn to the swim school, and since October, we have also spent most Friday nights at "Family Swim," an hour-long open swim at the pool. Quinn sleeps so well after swim lessons, so why not double up during the week, right? When Chris is in town and doesn't have work commitments, he joins us on Fridays, but Quinn and I have spent a lot of time on our own in that pool. I love seeing the progress he makes from week to week, love watching his confidence blossom, love that he loves the water as much as I did as a kid.

When I was going through my first round of chemo, my college friend Yumi sent Quinn the famous book, "Make Way for Ducklings," about a family of ducks that finds a home in Boston. At one point in the book, the father has to go away for a week, during which time the mother duck teaches all the ducklings how to avoid getting run over, how to walk in a straight line behind her, and how to dive and swim. "Just like me!" Quinn says now, when we read it.

Just like you, my little duck/fish. 

My Anti-Resolution

2014 is well underway, and I feel like I'm lacking in resolutions. How about you? I think January naturally lends itself to moderation after the excesses of the holidays, but I don't know that the month needs to turn into a let's-all-feel-guilty-about-gluten, -dairy, and -alcohol party. Because a) that doesn't sound like a very fun party, and b) we carry enough guilt around with us without setting ourselves up for failure at the start of the year, right? Or maybe that's just me?

Yes, there is something incredibly rewarding about the post-holiday fridge clean-out, but that has less to do with giving-up-the-pie-for-breakfast habit and more to do with being able to find the milk on the shelf again. What does any of this have to do with cancer? Not much, unless you believe pumpkin pie gives you cancer.

{Photo credit}

On that note...

Since my diagnosis, I have gotten scores of advice regarding what to eat (or not), supplements to take, whether it's okay to have dessert or a glass of wine, all in the name of curing my cancer. There have been studies saying drinking more than three glasses of wine per week increases one's risk for breast cancer, and then studies saying survivors who drink slightly more are at a reduced risk for death from cardiovascular disease. No one tells you how any of these applies to Stage 4 patients. There are also studies suggesting higher starch intake is associated with increased breast cancer recurrence rates, so maybe I should resolve to avoid potatoes?

I used to get in a panic about it, because what if I did this to myself? What if I could make this go away based on what I ate? And maybe that is a possibility, but as a cancer patient, I've also had to balance my diet choices with what is actually palatable and with maintaining my weight, which I'm afraid would drop dangerously low if I cut out all carbs. For those of you keeping track, I'm proud to say I'm up 13 pounds from my lowest point last year. The holidays had their work cut out for them and they didn't disappoint.

I also struggle with the idea of how moderation fits into any diet that omits any food group in its entirety. Then again, if I knew going dairy-free or gluten-free or potato-free would cure cancer, I’d sign on in a heartbeat. For now, I just try to limit my intake of processed foods, drink 3 glasses or less wine a week (most weeks), and eat lots of organic veggies. For now, it seems to be working. For now, my blood work and weight and energy levels are pretty good.

After hearing it enough from various sources, though, I brought up the question of whether I should avoid all sugar to my oncologist. He told me, "All things in moderation." He explained he'd be more concerned about my sugar intake if I was obese, since fat cells produce estrogen. Because estrogen can fuel some breast cancer, including my own, excess weight can be dangerous. Otherwise, nothing wrong with a little pumpkin pie now and then.

So I haven't come up with much in the way of resolutions, but I am a sucker for a clean slate (or fridge, as the case may be), which for me is the beauty of a new year. That we get to let go--of excess, of guilt, of whatever isn't serving us or helping us be our best selves. To a small degree, we give ourselves the freedom to start over.

For me, this year anyway, my goal is to be gentler with myself. Think of it as an anti-resolution. (I'm starting a trend here, I can feel it.) My goal is to not feel guilty about having a scone for breakfast or sharing a quesadilla with Quinn for dinner--in fact, to enjoy it for who I get to share the meal with. To not beat myself up for not writing as much as I'd like, since it would often come at the expense of putting Quinn to bed and I don't want to miss that time, although I am trying to finish my book this year. To not feel so abnormal when I get fed up with my two-year-old's defiance or lose my cool and yell. Turns out, other moms feel this way (and yell at their kids sometimes), too.

I've only been at it a week, but somehow, by being gentler on myself, I've found more space to breathe, which in turn (I think) is helping me be a kinder, gentler parent and maybe even spouse. After years of practice, I'm finally, finally able to carry a little more of my yoga off the mat and into my everyday life (the trick is in the breathing, really). I have a feeling 2014 is going to be a good year.

Tell me, what are your resolutions (or anti-resolutions) for the year?

Merry + Happy

I'm not the only one feeling the madness these days, right? Christmas is over, our cards made it out the door on time, there are no more presents to wrap or cookies to bake, and I still feel like I hardly have a minute to breathe, let alone string together coherent sentences. There's probably a New Year's resolution hiding in there somewhere.

Part of the non-stop nature of the season is that Quinn's daycare takes a two-week break this time of year. And Quinn does not take a break, ever. I mean, would you be able to nap if Santa had just dropped off a sleigh-full of new toys at your house? No, neither can my little guy.

So I have been busy engineering train tracks and launching rockets and traveling to the moon and going on pirate adventures the past week. My life could be worse. I am immensely grateful for this time.

But I've also been trying to find time to sit and reflect, to write down some of that reflecting here, to remember and take note of all--or at least some of--the things that make the holiday season so wonderful. Because if I take note of it, in some small way, it will last. Right?

I have so much to be grateful for, and what better time to reflect on that than year's end?

There is Quinn, of course. Quinn, with his "Merry Chris'em!" and "Yook! Chris'em yights!" and "It's Chris'emtime!" We may never speak English the same again in this household. (Have I told you about the "rainis bars"? We haven't used the word "raisins" since Quinn introduced us to "rainis-es.")

I love that he giggles when he hears "Santa, Baby" playing on the radio, and responds with, "Awwww, that's so cute!" because he pictures Santa in diapers.

I love that he adamantly says, "Santa Claus is NOT coming to town! Santa is."

I love that he marvels at peoples' Christmas lights as much as I do, sees the magic in them, is already witty enough to make a joke about how it must've hurt to wrap lights around the Saguaro cactuses.

There is Chris, stringing lights so I won't have to, reading dinosaur Christmas stories to Quinn before bed, mostly keeping his cool even though his important research trip to Ethiopia in January fell through (for the time being), warming my cold feet with his under the covers at night, and burning a wish with me in our fireplace just before midnight on the solstice because I'd wanted to continue the tradition his colleague started for us a few years ago. I don't know what Chris wished for, but I'll admit I wanted to do this ritual again to ensure my wishes keep coming true.

There is my health, obviously. No news is good news, and for now, all is quiet on the cancer front. I had chemo on Christmas Eve, so I wasn't feeling particularly well on Christmas day, but what better holiday to stay in your pjs until 3 in the afternoon, sipping tea and staving off nausea with comfort food? I can't think of one. I even cheated and had a glass of wine with Christmas dinner.

There is what my body is able to do, and I don't just mean cancer-wise. I can hold a handstand in yoga for a few breaths (next stop, "chin pose"). I can play hide-and-seek with Quinn. I can go hiking less than a week post-chemo. I don't take a second of that for granted, and am usually the one on the trail grunting "Fuck you, cancer" under my breath the whole way up. Last weekend, even though I didn't make it quite to the top of the mountain, I got to see this incredible view along the way.

There are our friends and family, who encourage us daily. We are so fortunate. Our lives are so filled with love. The giant stack of holiday cards we've received is a testament to that. I love the mailbox this time of year.

We have been through the ringer the last few years. We have grieved the death of Chris' dad, witnessed the unraveling of my parents' marriage, and dealt with my cancer diagnosis and its repercussions. But we also had Quinn, bought a new house this year, and Google+ just sent me this video, an eerily timely reminder of what a great year it's been.

Happy 2014, you guys.