Flashback Friday

Twenty years ago, in August of 1996, I was a 17-year-old girl about to start college. I had just flown across the country from Seattle to Baltimore, Maryland, by myself. My parents and I had said our tearful good-byes at the gate at SeaTac (back when you could still walk people to their gates at airports). I'd get picked up at BWI by upperclassmen on the welcoming committee. There were about four of us who rode nervously in the university-issued van to campus, our new home.

I moved into an un-air-conditioned, stifling dorm room at Johns Hopkins University, all of my worldly possessions in a large suitcase, plus a box or two I'd receive from home in the next couple of weeks. I had my rolls of quarters for laundry and phone calls home, my shower tote for carting my toiletries to and from the shared bathroom, and the weird extra-long twin sheets made specifically to fit those narrow dorm room beds. I just needed to go buy a box fan to deal with those last few weeks of swampy mid-Atlantic summer.

That first week is kind of a blur of freshman orientation activities like figuring out who has your same area code, if anyone, and things like finding the financial aid office for a check so I could buy books. And then I started a work-study job at the campus bookstore, so I got to see what classes everyone else was taking, too. The bookstore was mercifully air-conditioned, and in a basement, so I was happy to spend time there, even if I was only making $5.25 an hour.

At some formal my freshman year. LOOK HOW YOUNG!

***
Fifteen years ago, I was a college graduate living on Capitol Hill in Washington, DC, and working as a lobbyist. It was late summer 2001.

I was also training for my first marathon. My marathon training team would meet early on Saturday mornings to run along the historic C&O canal path past Georgetown, into the shaded woods in Maryland, through old tunnels, for miles and miles. It was muggy, but the conversation was good and the cause was worthy. I had joined the AIDS Marathon Training Program to raise money for DC's Whitman Walker Clinic, at the time the largest service provider for AIDS patients in the District. My marathon would be at the end of October in Dublin, Ireland.

Prior to security barricades and guards everywhere, ca. 2001

Then September 11th happened. I was at a client office in Northern Virginia that brisk, beautiful morning, listening to a presentation on systems security when everyone's phones and Blackberries started buzzing. How rude, I thought. But then the whispers made their way to the podium and the speaker stopped speaking. "A plane hit the World Trade Center," a colleague said to me, quietly. I had been in the World Trade Center the weekend before. We all gathered around a TV in the conference room to watch the news coverage, wondering what the hell had just happened in New York. It looked like footage out of a movie. This can't possibly be real, I remember thinking. And then the Pentagon was hit. 9:37 a.m. It suddenly became crystal clear we were under attack.

I was able to reach my boss, who said they were closing the city. She asked whether I had a place to stay. I called a college friend who lived in Gaithersburg, Maryland, outside the beltway. I could crash with her until the city opened again and I could get back to my apartment. We drank cheap wine and cried about the new world we were living in.

Two days later was my twenty-third birthday. I didn't much feel like celebrating.

But I did get on a mostly empty plane the next month and I ran that marathon in Ireland.

Proof.

***
Ten years ago, I was just returning from studying abroad in South America. I had finished my first year of law school and had taken the opportunity to spend six weeks in Santiago, Chile (where I spent much of the time sick with what was probably a bronchial infection) and Buenos Aires (where, recovered from my mystery illness, I ate my weight in grass-fed beef and red wine).

Chris and I had been dating about a year by then. Our schedules were equally crazy. I'd taken leave from work to go to South America, but was back at my job and school that August. He was frantically trying to finish his dissertation and typing away in his office at the Smithsonian most nights until the last bus came by, sometime around 1:30 in the morning. We saw each other on the weekends, where we'd rehash our weeks over runs through the zoo or beers in Adams Morgan. Or both, if we were feeling ambitious.

I was exhausted, but who cares when you're twenty-seven and in love?

In 2008, I graduated law school, followed Chris to Arizona, took and passed the bar here, and planned our wedding. We got married that fall, so broke it felt like we were in college again, but we had each other. And at least one of us (not me) had a job.

***
A little more than five years ago, Quinn was born. I'd settled into a job with a great team, Chris and I had purchased our first home (a tiny thing built in the 1950s), and Arizona was even growing on me. Life was so good.

Then on August 19, 2011, I went in for an exam with a breast surgeon who asked me to go to radiology right away. I still remember what I was wearing, a cute belted smock, navy with white flowers. I later threw it away. The radiologist took one look at my ultrasound pictures and told me she was 99% sure this was cancer.

Time seems to stand still at moments like this. I'll never forget where I was for 9/11, or what it felt like those first few days away from home at college. I'll always remember the prickly tentacles of fear that crept up the back of my neck when I was told I had cancer that Friday afternoon five years ago.

I wouldn't learn until later how aggressive or extensive it was, but I knew my lump was large. I'd thought it was an infection from breast-feeding. I was shattered to learn how wrong I was.

Five years later, I'm still here. A woman in my workout class this morning said, "Oh, congratulations! Five years is when your risk for recurrence goes way, way down, isn't it?" She was so excited, I hated to burst her bubble. But I chose honesty.

"No, it's just when they stop tracking us," I said.

She looked crestfallen. "Oh," she said.

"But it still feels like a milestone," I added, throwing her a bone. But also because it's true. It does feel like a milestone some days, like a rock in my throat on others.

Quinn is finishing his second week of kindergarten today. Chris just started teaching a new semester at ASU. I don't often know how to celebrate this day, or whether it's appropriate for a cancerversary. I mean, it was a terrible day of our lives, but then, look how far we've come. A lot of times I give the day a moment of silence and move on, but I think five years deserves something. Ice cream and a movie is sounding spot-on.

Officially Unemployed...And That's Okay

I knew it was coming, but it was still a blow to my ego to get the notice from my (former) employer in the mail. As of last month, NYSE Governance Services could no longer hold my compliance counsel position, since I've been out on long-term disability for two years now.

My resumé is officially blank. This is probably the end of my career as a lawyer.

I knew I probably couldn't go back. Almost one-third of the time I don't have enough energy to leave the couch. I have entire conversations with Chris and I cannot recall one iota, not one smidge, of the words we exchanged. The only reason I got 5,216 steps logged yesterday is because I'd forget why I entered a room, and end up making something like thirty-five trips back-and-forth across our house in an effort to find something that was in my car parked in the garage all along.

I'd have no business being a lawyer right now. Not a good one, anyway. 

I used to write white papers on how the Citizens United decision might affect a corporation's political donation plan, or help executives determine whether they were effectively training their employees on ethics and compliance issues. (You can wake up and stop drooling on your desk, now.)

Most of the time, my brain does not function on that level any more.  I am out of practice, and it's okay.

It is okay.

It took me awhile to admit that I am finally okay with this new reality, this not having a career that I worked really, really hard to achieve. That I'm okay being a full-time mom and full-time patient and part-time advocate. (I'd be okay without the patient part, honestly.)

It is finally getting easier not to compare myself to my friends whose careers are gaining steam (because that's what typically happens in your mid-30s). I have brilliant, hardworking, ambitious friends in my close circle who're vice presidents of major companies, engineers, surgeons at some of the country's best hospitals, nurses who help bring babies into the world, scientists who help patients get access to medicines they can't afford, professors, and -- yes, stay-at-home-moms who've left their careers as lawyers, too.

I can be proud of them and admire them without thinking less of myself, and more importantly -- finally -- without feeling sorry for myself about one more thing cancer took from me. This is my life, and it is more than okay.

(Don't get me wrong, I still have moments when I feel emotional about the lack of accomplishments I make on a day-to-day basis, like the fact that there are laundry piles everywhere, or piles of old magazines I mean to sort through, or piles of disability paperwork that needs to be filed... Basically, my piles sometimes make me cry.

I am working on some overdue spring cleaning, metaphorically and realistically.)

***

When Quinn asked me the other day why he had to go to school, I hesitated. I wasn't sure what to say.   On average, he goes to school about three days a week. His preschool is community-oriented and play-based, so it's basically days spent painting and making play-dough and reading and building cities out of blocks. Most of the parents know each other, and many of us spend time together outside of school.

So I said, "Sometimes, it's so I can go to the doctor. Sometimes, I get some work done." I didn't tell him that sometimes I lie on the couch and surf the internet for cancer cures for a couple of hours at a time. "But if you don't want to go as much," I continued, "you don't have to yet. I'd love to spend more time with you."

And he responded, "No, I want to go. I want to be with my friends." And then my heart shattered, but also swelled a bit, because my little guy is growing up and his friends are important to him, too.

Plus, I love it that he loves school as much as I did when I was a kid.

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}

The Best Medicine

I've been meaning to update you guys, I really have. But my boys and I have made some pretty monumental shifts since finding out I'd have to go back on chemo three weeks ago. There have been meetings with my company's HR representatives, hours on the phone with insurance and student loan companies, conversations with my bosses about next steps... But I'm getting ahead of myself. More on this point in a minute.

To take a break from it all, and because I'd had this trip planned since Chris got back from Africa in February, I spent last weekend in NYC visiting some of my best friends. They let me lick my wounds a little bit, but mostly reminded me (again) how much good I have in my life. This was no pity party. We talked about summer plans. We ate sushi at a corner Japanese place in the Village. We barbecued in Brooklyn and played made-up games way past my bedtime.

We had brunch at a little spot in the Upper West Side, and watched their little ones run around on the lawn in Central Park on a day when it felt like everyone in the city was outdoors.

We took goofy pictures...

And here's one of the seventeen million reasons New York is so great: I saw a woman with pink hair towering twelve inches over her head and a man with a mohawk who was dressed in chainmail. In the middle of the day. Nobody gave my little pixie a second glance. In a city where anything goes, I was finally able to feel carefree instead of self-conscious.

And there is nothing quite like New York City to remind you to dream big. The air there is buzzing with possibilities and resilience and hope. It was exactly what I needed.

I had my first dose of this new chemo two weeks ago. The good news is, I think I'll get to keep my hair, I don't have to take as many steroids, my blood counts look great, and the nausea was bearable. On the downside, I've had a throbbing headache for almost fourteen days and the fatigue doesn't seem to be any less than it was with previous chemotherapies. On the one hand, I wonder how this medicine is affecting the rest of my body, long-term. It is, after all, poison. On the other, I hope it's giving cancer a swift kick in the ass.

When told Chris a few days after treatment that I felt like crap, he said, "Well, imagine how the cancer feels."

It didn't help my fatigue that my flight home from New York was cancelled and re-routed through Las Vegas, which required staying overnight in a Hampton Inn where I got approximately 4 minutes of sleep.

What is helping, and what's been keeping me so busy the last couple of weeks, is that I made the decision to step back from my job for a bit, to focus on my health and my family. I could no longer justify taking a million hours off for doctor's visits, scans, infusions, and recovery days, while still holding myself to a full-time standard. It wasn't fair to put that much pressure on myself or dump that much extra work on my team with every round of chemo.

It's been a tough decision for me because in some ways it feels like I'm admitting defeat, like cancer is taking my career away, too. My therapist has suggested reframing it so that it's not about cancer winning, but rather about me re-prioritizing. I'm working on that. I'm also hoping it's a temporary fix, that I'll conquer this beast again and have the energy to return to work someday soon. I'm hoping that with a little less stress, I can finally kick this into long-term remission. Or at least enjoy some extra time with my friends and family--the best medicine, really--while trying.