Sunday, June 30, 2013

Living Legendary

I know the woman in this video through online support groups, but I also know her because--in a sense--she is me. Jen is a Stage 4 cancer survivor, a writer, and a mom to a sweet little boy who loves legos. She is the author of a couple of books on living with advanced cancer, and it is worth checking out her site. If you're feeling generous, please also consider donating to help her continue her fight. I know she has so much to live for.

Tuesday, June 25, 2013

How to Get to Heaven

Have I mentioned I don't typically do things the easy way? Have you noticed a pattern, too, when Chris leaves town? There was my broken arm when he left for Ethiopia in January, the opening up of my incision and subsequent emergency surgery while he was on a plane to Tennessee in April, and last week we had to tear out a wall of our house to treat it for termites--just days after Chris left for Kenya for a month.

Not to mention this new chemo. Because there's nothing like going through chemo while your husband is halfway around the world and only available on a satellite phone. It costs $10 a minute to talk to each other, so we basically say, "Hi, love you, still alive, bye," twice a week and leave it at that.

Just to up the ante over here, the universe threw in triple-digit temps (it's supposed to hit 117 in Phoenix this weekend), and I found not one, but TWO giant water bugs (official name, I'm sure) in our backyard yesterday. One was still living; I had to do a double take because I thought it was a leaf walking, it was living up to its name that well. God help me if that thing ever shows up in my house. You will know because you will hear the screaming. I had to fish the dead one out of the pool, where it had probably boiled to death.

To escape the bugs and the heat, Quinn and I drove to San Diego last week. He spent the last half hour of the drive yelling, "SAAAY YAYO!" ("San Diego"), and he's asked to go back about four dozen times since we've been home.

We stayed with good friends who have two little girls and live ten minutes from the beach. Quinn loved that the water chased him. And the lifeguards in La Jolla were taking paraplegic kids out in the waves, to experience the water in ways they're not able to do on their own. The wheelchairs they used on the sand had large rubber wheels; Quinn was transfixed by what he called "water tractors." I explained what a nice thing the lifeguards were doing and told Quinn they were heroes.

We went to the San Diego County Fair, too, where Quinn had his first funnel cake and rode on every ride that would let him. At 34 inches, he didn't quite meet the height requirements for the Oh Chute potato-sack slide, which he really wanted to ride. Maybe next year.

We even got a babysitter, and I did my first training walk for the Avon Walk I'm doing in San Francisco in September. My body was like, "Really? You're doing THIS again? Really??" Just watch me, I responded (and yes, now I'm talking to myself--another consequence of Chris being in Africa). I might even go back to San Diego for another training walk, because walking a half dozen miles in 72 degrees with a light ocean breeze beats walking to the mailbox when it's 117 out any day.

Quinn and I slept in until 8:15 on Sunday morning. We spent time outside without feeling like we'd stepped into an oven. We even got a little time to catch up with some cousins we don't see often enough.

When that giant water bug walks into my house and I have a heart attack, I hope heaven looks just like San Diego.

Monday, June 17, 2013

Love Bug

On days like yesterday, when I woke up with a splitting headache that threatened to break my head in pieces like a dropped watermelon, when my husband left for the other side of the world before I even got out of bed, when termite poop proved we have a problem that's going to require taking down an entire wall, treating it with pesticide, and erecting a new wall, when all I want to do is sleep until I feel like a normal, non-chemofied person again, this face keeps me going.

Look at that mischief waiting to happen.
That wonder.
That mix of curiosity and concern.
That pure joy.
Those eyelashes. 

Everyone should have a Quinn when they're going through chemo. But you'll have to get your own. This one's mine.

Saturday, June 15, 2013

Fake It Til You Make It

I had treatment yesterday, so all I feel like doing right now is online shopping for things I don't need and can't afford. Do you do that too? Fill up shopping carts all over the web, just to look at pretty things you're not really going to buy? I'm not sure what the point is in this particular time-waster, but please say I'm not the only one.

Yesterday also marked four months since the end of my last chemo, or, for those of you keeping track, four months of hair growth. And it appears I'm going to get to keep my hair on this new drug. Hallelujah.

I get far more compliments on my pixie cut than I ever did being bald (or having long hair, for that matter).

During my infusion yesterday, the woman sitting next to me was in her seventh year of treatment for metastatic ovarian cancer. She said she hoped she wasn't depressing me. I told her not at all; her story gave me hope. We got to talking about side effects and how we feel like old pros at chemo now. She said she didn't mind losing her hair, that it seemed like such a petty thing in the grand scheme of things. I sort of nodded and feigned agreement, but admitted that part was hard for me.

It might be petty, but I simply prefer to have hair. It's easier to pretend I'm not sick if I don't look sick.

And it's growing in as thick as ever. Unfortunately, my eyebrows are not. I still have to draw those on. Here's me getting ready for pre-chemo yoga yesterday morning (which turned out to be pointless, since I sweated so much all my makeup came off). Listen to me and my first world problems.

But eyebrows make a big difference, don't you think?

And yes, I went straight from yoga to chemo. I was a sweaty mess in the infusion room, but at least I got my workout in. My surgeon finally gave me clearance to exercise about a week ago after four months of not being able to, so I'm trying to get strong again. Because being strong also makes me feel not sick.

Between exercise and my hair, I can almost pretend there's no cancer in my life. Almost.

Tuesday, June 11, 2013

Flush with Care

You all are pretty incredible, you know that? Thank you for reaching out, for the texts, emails, cards, offers of vacation homes (!!!) and just general love coming our way. So many of you have asked what you can do to help us out right now, and the truth is: you are helping, just by letting us know you're there if and when we do need something. As my friend Francesco Clark puts it, so many of you guys are showing up for us, virtually and otherwise. Thank you.

For now, I'm feeling okay, most of the time. We're still operating as a functioning household, most of the time. And I can't quite blame all of our disfunction on cancer, as much as I'd like to point fingers for the overflowing toilet yesterday morning. Hint: don't put baby wipes down old pipes. Oh, you knew that already? Lucky you.

Side note: did I tell you about the time I flushed a scorpion down the toilet, along with the approximately 42 paper towels I'd used to pick him up after smashing him with a wooden clog? Because I was worried the poison would still be harmful even from a dead scorpion, and it might seep through a regular number of paper towels. Yeah, that toilet overflowed, too.

So other than a few days post-treatment (and this dull headache I can't seem to shake, but that I blame on the 109-degree temps here and the fact that I'm perpetually dehydrated), I don't feel sick. I don't feel entirely well, either, but--and this is a big but--my symptoms are due to treatment, not cancer itself. An important distinction, don't you think?

Fatigue is still my biggest hurdle, but I've started going back to yoga a couple of times a week to try to combat it. You know, because exercise gives you energy, which you can then use to do four loads of laundry after mopping up the bathroom floor with every towel in the house when the toilet overflows. Win-win. I also believe a strong body will help me continue to tolerate treatment better than if I just sat around eating peanut butter cups all day. Plus, my oncologist says exercise is the best way I can maintain my good health. Ha.

I'm not able to keep up with Quinn round-the-clock, so he's still in daycare a few days a week. I try to preserve my energy for the days he's home, try to keep his life as normal, innocent, and filled with wonder as possible. I try not to worry.

You guys help keep my mind distracted (which seems to be a good thing, at least for my anxiety). You've invited us over for playdates, dropped in for dinner, offered us solace from the heat--we are so excited to leave Phoenix and come see a few of you this summer--and reminded me that in so many ways, my cup runneth over. My toilet, too.

Thursday, June 6, 2013

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.