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

A Book Update + Some Advice from Stephen King

So far, this month has not gone as I'd planned.

Side note, sort of: I finished the first draft of my book just before Thanksgiving. A friend and former colleague helped me move parts around so that it didn't take such drastic temporal leaps. It has a flow that I think makes sense now, thanks to her input and organizational skills. I no longer repeat the same stories four separate times, thanks to her keen eye and editing efforts.

Then on the advice of Stephen King (who's been somewhat successful at writing books), I decided I was going to let my manuscript sit, untouched, for six weeks. The idea being that when I came back to it, it would be with a fresh set of eyes. In theory, I'd be ready to cut out the parts that were unnecessary (no matter how brilliantly I thought I'd written them) or add details that would help carry the story forward or fix the parts that weren't so well-written.

My plan was to spend this month, after the clamor of the holidays had quieted down, to set to work on draft number two. I would be diligent in the new year, without the distraction of present-buying or cookie-making or company-hosting. Quinn would be back at preschool after an extended holiday break, so I'd have more free time. Or so I thought.

Then, I was hit with the worst cold I've had in at least a year, and just as I was recovering, Quinn had to have surgery. My little guy needed me. Editing my memoir would have to wait until both of us were back on our feet, back to our routines, backing away from the Tinker Toys and television overload.

And there went the first two-and-a-half weeks of my year.

So that's the update on my book. It's done, sort of, but still needs some reworking in spots. I've got a meeting with my agent this week, who, if I'm lucky, won't drop me just yet for still having not completed this project. Then I'm meeting with a friend next week who's also writing a book, hers on how writing helps us heal. (Here's further proof.) My friend and I are sitting down during my chemo infusion to exchange chapters, to read and critique and (I hope) praise each other's work. Please wish me luck.

Another friend recently wrote me that she doesn't set new year's resolutions so much as new year's goals, the idea being that an aspiration is somehow more achievable -- maybe because the idea of it is more approachable? -- than a strict resolution. If that's true, my goal of the early part of this year is to wrap up this project, perhaps tie it in twine, send it on its way, and pray my agent is able to find a publisher.

{1, 2, 3}

In the meantime (or when I'm looking for inspiration), I recently read this, just started this, and am waiting on this, which was written by my sorority sister and friend Amelia, and is available for pre-order now. Amelia's book is bound to be as clever and poignant and hilarious as her blog. Go get yourself a copy! Or let me know what books you're reading lately. We'll start a club and discuss over some wine. Because another thing Stephen King told me is: "If you want to be a writer, you must do two things above all others; read a lot and write a lot." Hey, at least I'm still finding (a teensy bit of) time to read.

So Now I Feel Like a Slug

I started Monday morning with a hike up Piestewa Peak, where I climbed 1.2 miles uphill to the summit just in time for sunrise at 6:19 a.m. I'm not normally up quite so early, even on mornings when I hike, but one of our smoke alarms was running low on batteries and alerted us with a persistent beeping that woke Chris and me up at five o'clock. While Chris pulled every one of the devices out of their sockets, I left the house to get some exercise. This photo is from my iPhone. This is where Phoenix outshines DC.

I got home from my hike before Quinn was out of bed, so I even had time to shower and savor my first cup of coffee, all thanks to our faulty smoke-alarm batteries. Then Quinn woke up, I made breakfast, packed his lunch, tried to brush his hair (unsuccessfully), and eventually got him dressed in the correct dinosaur shirt before heading to preschool.

After drop-off, I headed to chemo.

So now I feel like a slug.

I'm nauseous and mopey and feel like my limbs are stuck in buckets of cement, my head in a vice.

This morning, Quinn wanted me to build him a transformer house out of pillows. He was not amused when I asked if I could sleep on one of the walls. He's at school again today, while I'm parked on our couch trying to slog my way through a to-do list that mostly requires making phone calls or filling out disability paperwork, and even that feels like it might need to wait until this fog lifts a little.

On days like yesterday and today, days I still have every three weeks, I'm reminded that although time is so very important, that we never know how much of it we've got, that despite myself I've felt a certain gotta-race-against-the-clock alertness since my diagnosis and I desperately want to enjoy every moment -- I must also take the time to recover in order to get back out there and grab life by the horns or just build a fort with my son. There is no magic way around it. I am knocked out, rolled over, flattened by this fatigue (FLATigue, as my friend Sarah calls it), and my only way through it is patience and time and more patience and a little bit of anti-nausea medication and the knowledge that this, too, shall pass.

So this picture from the top of a mountain is a reminder to me that it's worth it, that on my best days I still have energy for early morning hikes or taking Quinn to swim lessons, that there are better days just around the corner. There are better days ahead.

An Update

After chemo yesterday, I'm feeling pretty queasy today. I don't usually take Quinn to daycare on Tuesdays, but the option was available today so I took advantage of it. And even though our trip to Portland alleviated much of my anxiety going into this week, I still cried into Quinn's pillow in the dark as I laid down to tuck him in last night. Some of it was the slight stress I was feeling over my scan results -- UPDATE: as I was writing this, my doctor called to tell me MY SCANS WERE CLEAN!

There's no easy transition here, and mostly, my tears last night had to do with a friend, Brigid, who was admitted to the hospital yesterday for the third time in the last couple of weeks. It is really tough to celebrate my good news at the same time that my friend suffers. The tumors that have been plaguing her lungs for nearly eight years with nary a symptom are now growing so fast they are causing her lungs to repeatedly fill with fluid despite procedures to drain them; Brigid can no longer breathe very well unassisted. 

{Brigid and me, December 2013}

On paper, Brigid's cancer is very similar to my own: Stage 4, Her-2 and ER/PR+. But the drug that has held me in remission for nine months now had almost no effect on Brigid's cancer. Killing cancer is not yet a perfect science. 

When I first met her, I was in awe of how long Brigid had lived with this disease -- about five years at the time. As I approach the three-year anniversary of my diagnosis, though, I realize five years isn't close to enough time; neither is eight years. Is there ever enough? Are we ever ready to throw in the towel? Does it matter what we want?

Who knows why I respond to drugs that haven't stopped Brigid's disease from progressing? Who knows how long my luck will hold? For now, I am feeling an odd mix of relief and fear for my friend. My stomach is doing flip-flops, and this time I can't entirely blame chemo.

Why We Walk

Over the weekend I flew to San Francisco to walk in my second annual Avon Walk for Breast Cancer. Nine of us met up in the pre-dawn chilliness two days in a row to complete 39.3 miles in order to raise money for research into this deadly disease. 

It was frigid at 6 a.m., but at least I wasn't bald this year. 

{early morning festivities}

During the opening ceremony, a kid who must've been about 12 spoke about losing his mom after her several-year battle with breast cancer, and I broke down sobbing. I turned to my friend Shelby for a hug and made a joke about the crying starting already. I couldn't help myself.

It was also an especially emotional walk for me because I learned at lunch on Saturday that my fellow fighter Jen passed away Friday night, leaving her six-year-old son behind. I thought of her (and him) so often as I walked. On the eve of "Pinktober," all I could think was: this disease needs to end.

{Chinatown}

My teammates and I walked up steep San Francisco hills, along the waterfront looking out toward Alcatraz, over the Golden Gate Bridge, through Marin County north of the city, and then we got up in the morning and did it all again. My friend from Seattle joked that if she'd known we were walking that far north, she would have just started walking down from Washington to meet us. 

{the Golden Gate Bridge on Saturday}

By the end of the first day, our feet hurt, our hips were cramping, and some of us were chafed in pretty unpleasant spots. So we soaked our feet in epsom salt baths, downed a couple of anti-inflammatories with our carb-filled dinner, and got up to do it all over again on Sunday. We walked because we could, and there are so many who no longer can.

{some of my teammates + me after Day 1 of walking}

Many walkers wore "race" bibs that said: I'm in it to end it for... or I'm walking for... and they wrote whoever they were walking for in the blank. I'd written mine out on Friday night, before hearing of Jen's passing. Mine said, "Myself, and all my Stage 4 sisters," along with several women's names, including Jen's. 

Another woman wrote, simply, "Humanity." (And then I felt like a schmuck for saying I was walking for myself.) 

And one man's bib said, "I'm walking for time, valuable time," and I thought That's exactly why we're walking.

Join us again next year?

Two

Dear Quinn-Love,

Just like all the parents before me promised, I blinked, and suddenly you're turning two this week. Two! I'm fairly certain that, at this rate, you'll be driving next month. When did you get so big? Was it yesterday?

You're curled up in bed next to me as I write this. And for now, let's skip past your sleep issues that I'm fairly certain are related to separation-from-mama-anxiety that only gets worse when your dad is out of town. The truth is I don't mind. I love hearing your soft snores, love falling asleep next to you, love waking up with you nestled in the crook of my arm--even if it means getting kicked in the face a few dozen times as you climb Mt. Everest and run a marathon in your sleep.

From the minute you wake up--this morning at 6:30, saying "Bite-a, mommy! Bite-a," as you lifted my head off my pillow (that's "get up!" in Quinn-speak)--until the moment you fall asleep at night, you are an energizer bunny, climbing anything that's got elevation, rearranging furniture, building forts out of couch cushions, and lately, trying to help me in the kitchen.

Tonight while I was cooking dinner, you pulled a chair over to stand on so you could see into the utensil drawer, which was fine while you were playing with measuring spoons. But in the time it took me to turn around and stir the marinara, you found the scissors. You were so excited about your discovery--something shiny and sharp? Awesome! Luckily, I caught you before you had the chance to sprint around the house with them. Like a responsible parent, I picked you up and sat you on the counter where you could watch the spaghetti water boiling instead.

I love your curiosity. I hope you never lose that. "What's that?" is the soundtrack of our lives the last few months. But more and more, our answers are sinking in and taking hold. So sometimes we'll say, "You know that one. What is it, Quinn?" And you can usually give us the answer with a proud grin. "It's a wall!" "Yellow!" When we were reading your alphabet book the other night and I said, "U is for..." your dad's eyeballs just about popped out of his head when you shouted, "UNDERWATER!"

Suddenly, in the last couple of weeks, you're speaking in full sentences. You and I were counting in the car the other day--with an emphasis on the number nine that for some reason was cracking you up--and when we got to number ten you clapped, then said, clear as daylight, "One more time please, mama?"

You examine everything, want to see how it works, how it fits together, turn it upside down to consider it from a different angle. You have your dad's patience for solving problems.

And you seem to have inherited both our bullheadedness; we'll do our best to channel that in a positive direction.

For now, you demonstrate it with your aversion to pants. A couple of weeks ago, we did not leave the house until 2:30 p.m. because it just wasn't worth the meltdown that forcing you to wear them was causing. On days when we have to be out the door in time for me to make it to work, you and I have occasionally ended up in a wrestling match on your bedroom floor, me amazed by your strength and determination to stay bare-legged, you pissed that I would even attempt to clothe you. For the record, I have only resorted to taking you to daycare in your pajamas once.

You challenge me in ways I never could have anticipated, and somehow, I love you more every single day--in large part because you force me to build forts out of couch cushions and stay in my pajamas until the middle of the afternoon, which turns out to be exactly what I needed so many times over this past year. I'm certain I couldn't have gotten this healthy this quickly without you. And I can't wait to see what the next year (and so many more after that) have in store.

Happy SECOND birthday, Bug. Your Mama loves you.

Counting Time

As a cancer patient, I mark the passing of time in three week increments between infusions (a phenomenon described eerily by Susan Gubar for the NY Times here). These last three weeks - with the winding down of the holidays, Chris gone to the field for eight days, a huge work deadline for me, and Quinn's bronchitis and sleeping troubles - time flew by. It didn't seem like enough downtime between treatments. Usually, I'm feeling back to normal and exercising regularly by the time my next infusion rolls around, but out of sheer exhaustion, that didn't happen this round.

It feels like I've barely had time to come up for air, and the next wave is knocking me over again, dragging me under and spinning me around while I hold my breath and wait to be spit onto shore.

I had chemo this morning, and if you count the six rounds of chemo I had last fall, today was my fifteenth infusion over a total of thirty-nine weeks, which is coincidentally the exact amount of time I was pregnant with Quinn. This seems like a nice stopping point - just the right amount of time to produce a healthy new life. And as with pregnancy, my body is achy and tired, I'm having trouble sleeping through the night, and I'm totally ready to be done and on to the next phase.

When I finished up chemo last December, the nurses showered me with confetti and made a big deal of it being my last round; it's a tradition they do for all their patients. The few of these celebrations I've witnessed over the last six months were bittersweet for me, not having a definite end date or specific number of treatments to complete before I could say "I'm done!" this time. In the beginning of this cycle, all my oncologist would commit to was, "At least six months," and "We'll see."

As I think I've mentioned, I have a PET/CT scan this Friday. If it's clean, my doctor will drop the Taxotere (the chemo component), and I'll just be on maintenance drugs long-term, or as long as there is no evidence of disease. If it's clean, today will have been my LAST CHEMO, possibly ever, but there was no confetti this morning. My nurse didn't want to jinx anything; she didn't even mention it until she was giving me my flu shot at the end of the day, just before I headed home.

I'm trying not to get my hopes up, but after October's clean scan, I'm cautiously optimistic. And I don't know about you all, but as much as it makes for exciting cliffhangers and quirky plot twists, I'm ready to focus on something other than three week infusion cycles, how many steroid pills I still have to take, how few eyebrow hairs are still holding on (about a dozen per side, if you're interested). I'm ready for what's next: time to focus on my growing boy, time to write a book about this crazy journey, time to reconnect with my husband, time, time, and more time.