Wednesday, January 29, 2014

The Days, They Are Long

I went to a work happy hour last week. I know, I'm not even working, but there was a meeting here in Phoenix that meant a lot of my colleagues were in town from all over the country. I don't know if or when I'll go back to work, but it was so good to catch up with these people, some of whom I hadn't seen in eight months (or more). My former boss was here from Denver, and it was lovely to see her and share photos of our kids over beers.

And then I was happy to get home in time to read Quinn a bedtime story and tuck him in.

I realized I miss certain things about working in an office: the regular adult interaction, for example. But staying home with Quinn is good for my soul. As I explained to a couple of people that evening when they asked the inevitable question about me returning to work, I feel like I'm tip-toeing a fine balance right now and for the moment it's working for me. My last scan was good, my weight is up, my blood counts are mostly okay, and--most weeks--my fatigue is manageable. (Although I've had some other health issues lately, but I'm not sure I'm ready to write about that yet.) I am scared that if I were to add one more element to the mix, I'd fall off this high wire act I've got going. So my answer to them was: not yet.

Also, with the number of doctors appointments I've got every week, it wouldn't be fair to my team. I spend half the day most Mondays at or on my way to (or home from) appointments. Plus there are scans, follow up visits with my oncologist, not to mention "normal" appointments with my gynecologist, dentist, dermatologist, therapist... Plus Quinn's check-ups. It's a lot.

So I expected the question about returning to work. What I didn't expect was the question about what it is I do with my days.

I don't think the guy who asked it meant any harm, but I was caught off guard--and irritated, if I'm being honest. I sort of let the question linger, so I'm sure it became as awkward for him as it was for me. Because--how do you answer such a thing? I don't remember what I said. Probably something to the effect of, "Crazy how raising a 2-year-old can take up so much time!" Later, I thought I should have just said, "Laundry. I spend all of my time doing laundry." It feels that way some days.

This is not the first time I've gotten this question. I think most stay-at-home-parents grapple with it at some point, unfortunately. So I've been trying to give it a little thought the last few days. What do I do with my time (now that I'm not working)? I did think I'd have more free time, time to organize photos of Quinn or write or clean out my belly button lint. All of the stay-at-home-parents are laughing right now at my naiveté. I at least thought Quinn would nap.

There are my appointments. And Quinn (who does not nap, and hasn't at home for about a year). On the days he's not in school/daycare, I try to do things with him--swimming, the Children's Museum, the train park, the zoo) rather than spend my time with him cleaning the house or running errands. Then there's the aforementioned laundry. There is also sleep. We cancer patients need a lot of it. I typically get 8-9 hours per night, and I'm still fatigued. My younger self is embarrassed at my laziness, but I can't help it. This disease makes me tired.

I also try to exercise to combat the fatigue. On the days Quinn's in preschool and I don't have doctors appointments, I try to make it to yoga or on a hike.

I try to find time to write. I try to find time to be a friend. I try to find time to nurture my relationship with Chris. I try to stay present, so that I'm not anxious about my future. Because as the saying goes, the days are long but the years are short.

Why do I even feel the need to write this post? To justify what it is I do all day? Part of it is how competitive I've always been, how results-oriented, how type-A. The question about how I spend my time broke open some insecurities I've felt since I stopped working. But my insecurities these days are less about cancer winning, and more about what I'm contributing to the world.

Because I don't have much to show for my days at home, except an almost-three-year-old who challenges (and rewards) me in ways my job as a lawyer never did. I am raising a little man, which I know is as important as any career. So why do I still feel the need to prove the value in that? Why did one little question ruffle my feathers so fiercely and put me on the defensive? I'll let you know if I figure out the answer, but I'd also love to hear your thoughts.
{Quinn takes a selfie}

Wednesday, January 22, 2014

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.

Tuesday, January 14, 2014

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?

Monday, January 13, 2014

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. 

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. 

Tuesday, January 7, 2014

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?