WEGO Health Awards

I'm not sure which one of you did it, but whoever nominated me for not one but two WEGO Health Awards (Best in Show: Blog and Patient Leader Hero) -- THANK YOU!

Some beautiful soul named Rhonda had this to say:

 Jen isn't "just" a patient leader hero. She is THE HERO of all time! The energy Jen gives off is welcoming, wise, & w/ those things brings a level of comfort. You don't have to chat w/ her long before realizing she is INCREDIBLE. From a *terminal* cancer DX to navigating parenthood & autoimmune disease, Jen is here. Sharing. Loving. LIVING. <3   — Rhonda

It means the world to have my work here recognized. As I change yet another diaper or wash another bottle (how do the dried bits of formula get so glued up into the nipples, anyway?!) and feel like I'm not doing as much advocacy or policy work or writing as I'd like lately, it made me a little teary-eyed just to be nominated.

To be fair, we also went on vacation last week, where I was still very much changing diapers, just with prettier views.

I've got to figure out a way to advocate from Hawaii...

In the meantime, here is a truth I've learned, and I think the attribution goes to Madeleine Albright: as a woman, you might be able to have it all, but not all at once. You can go on vacation to celebrate a friend's one-year cancerversary, you can have a kick-ass career (or so I've heard), you can have children and/or pets and be a good mom to them, you can volunteer for organizations that make your heart sing, you can cook homemade meals every night, you can write a memoir, and you can run marathons or hold a handstand in yoga. You just cannot do all these things at once.

Especially don't try to do a handstand while making dinner. You are not Dr. Seuss.

Because this advocacy work (and stay at home mom work!) isn't often paid, and because my husband has a job that expects him to be in the office (the gall), I can't say yes to every opportunity. As much as I'd like to learn more about the science of breast cancer or how to be a better advocate or lend my voice to try to talk some sense into Congress, it's not always feasible, with a 7-month-old and a 7-year-old to take care of. To be honest, I have felt wholly deflated more than once this year because I've had to turn down pretty incredible experiences due to a lack of childcare.

And then the one conference I did attend, I missed the dickens out of my kids. Ah, parenting.

But also, those who say they want to hear and incorporate patient voices could be better about compensating patients, am I right? At least cover some costs so more of us can participate? (Huge shout-out to the team at HealtheVoices here). As for the rest, a woman can dream.

My point is, I wish I was doing more in this space but my efforts have been temporarily curtailed by a peanut named Noelle and her big brother. They demand (and deserve) the majority of my attention for a bit. So it makes me even more verklempt at these nominations because this year has been such a different kind of challenge. Turns out, parenting is exhausting even if you're not also being treated for cancer.

If you have a moment, please consider endorsing me for one or both nominations. I appreciate it -- and you all -- so much.

Around the Web

I've been a little remiss in posting these finds. Blame it on summer?

Our local public radio station did a piece earlier this week on summer seasonal affective disorder (SAD). The gist of it was that SAD is just as likely to hit Phoenicians in July and August as it is mid-westerners in February because we are stuck indoors just as much as those shoveling snow mid-winter. I don't think I need antidepressants to deal with Phoenix summers (yet; ask me next month when everyone else has moved on to pumpkin spice lattes and it is still well above 100 here).

But I do my best to get out of here as often as possible in the summer months. I'm limited by my chemo/lab schedule and our budget, but we get creative. Tag along when Chris has a conference in Portland in August? Sign me up. Drive to San Diego to stay with friends for a long weekend before Chris' semester starts again? Yes, please. If I could get away with it, I'd be a total snowbird. As it is, my head still thinks it's on summer vacation.

***

Here's what caught my attention on the web the last couple of weeks. See something you think I should include here? Please send me an email.

One More Reason to Limit Pasta?

If only I knew whether my tumor tissue had the IGF-1 receptor. . .  I'll admit I had toast (whole grain, smothered with mashed avocado and a drizzle of olive oil) for breakfast, and we eat pasta or pizza in our home about twice a week. I haven't changed my diet much since my diagnosis, since I've always aimed to eat pretty healthily. Tell me, how has your diet changed (if at all) because of cancer?

Another Gene Mutation to Blame for Breast Cancer

"The breast cancer risk for women younger than 40 with PALB2 mutation was eight to nine times as high as that of the general population."

Guess what I'll be talking to my oncologist about the next time I see him.

A Link Between the Pill and Breast Cancer. Are You Surprised?

"The pill is essential; not getting cancer is too. How do you choose what's more important—a lifetime of easy reproductive autonomy, or ratcheting down your risk of a deadly disease by marginal amounts?"

How Sleeping in Total Darkness May Help Fight Breast Cancer

You can turn off your iPad at night, but what if you work the night shift?

Immunotherapy Continues to Gain Traction

"We all get vaccinated when we are kids, and we know boosters can work for incredibly long periods of time,” Herbst explained. “That’s because the immune system has such a long memory. And with immunotherapy, if a tumor changes, the immune system can change to attack it too.”

And More Good News About Aspirin, Too

“People should talk to their doctors to make sure there’s no risk of bleeding, but the evidence is that everyone between 50 and 65 should consider aspirin.”

How Cancer Cells are Like Snowflakes and Fingerprints

"An important question about chemotherapy is whether resistant mutations already exist in a few rare cells in the tumour before treatment begins or whether they arise through natural selection as the cancer evolves during therapy."

I Hope This Isn't How My Colleagues/Friends/Neighbors Reacted to My Dx

At the very least, please see your doctor if you think something doesn't feel right.

A New Type of Therapy to Stop Metastases?

"Now, the duo have developed an improved version of their compound, which they hope will eventually prevent the cancers from spreading further once they have metastasized. And because it only blocks cancer cells from landing at their intended targets - it doesn't kill any cells, cancerous or not - the substance in theory is nontoxic."

Better than Xanax

Somehow, three months have passed and it is time for another scan. And, miraculously, I have not been completely hijacked by anxiety this time around (only occasionally held in its grips over the past couple of weeks). I'm not saying I've been a free-spirited, deep-breathing, always-patient monk about it, but remember: this is me we're talking about. Was I ever going to be that person?

My secret to staying sane? Lots of wine.

I'm only slightly joking.

We spent the last week in Portland, Oregon -- Chris at a workshop on volcanic ash, Quinn and I exploring summer in the Pacific Northwest with one of my best friends from college, J.T., and her two girls. We took our three preschoolers to the zoo, the park, a fountain they could splash around in for hours, a farm to pick berries, another park, out for ice cream a couple of times, and to the Oregon coast to explore the beach. We stayed busy.

My friend took me to her -- how do I say it? intense? sweaty? insane? -- spin/dance class where I almost fell off the bike. Her husband had asked me the night before if I had much rhythm even though he's known me since we were 21 and has probably seen me on the dance floor. When I said, "Not really," he replied, "You're going to hate it." Hate is a strong word, but I probably bore a strong resemblance to Elaine in her infamous "Seinfeld" dance. Since I didn't pass out, though, I figured it was a good indication I'd do okay on the echocardiogram of my heart this week. I hope.

Between the blackberries and the misty coastline, I was homesick for that corner of the country where I spent a good part of my childhood. I was ready to find Chris a job studying the soil of the region's winemakers. That's a good job for a geologist, right?

It's not like Chris didn't love the inexpensive microbrews or the lack of pretension or the fact that the only things that will get you judged are putting your recycling in the wrong container or driving too aggressively.

***

This morning I woke up before Chris and Quinn to drive across town for my CT scan, then across the street to the hospital for the ultrasound of my heart. I grabbed coffee between my tests, and a sandwich afterward, before heading a couple of miles south to my infusion center for chemo.

My nurses all asked if I'd had a rough weekend thinking about my scan (results of which I'll get Wednesday afternoon). The truthful answer is no, because it's hard to think about an upcoming scan when you're chasing toddlers and marveling at perfect summer weather and attempting to stay upright while dancing on a spin bike.

I wonder if I can get a prescription for a trip to Portland every three months?

Back to Earth

As we were driving the two hours north through the pouring rain from Duck Key to Miami on Monday morning, Quinn asked us where we were going. 

"We're going home," I said. "To our house in Phoenix."

"Oh," he responded. "We're going back to Earth?" 

I laughed, but it does feel like we landed with a thud squarely back on planet Earth Monday night. We woke up yesterday morning to a conversation with our contractor about replacing the chipped countertop in our new mother-in-law suite, to an empty refrigerator, to Quinn's jet-lag at 5:15 a.m., to ONE HUNDRED ELEVEN DEGREE TEMPERATURES. Way to welcome us home, Phoenix.

We were in the Keys for two of my best friends' wedding, a couple of people I've known since I was seventeen and we were all freshmen at Hopkins together. A couple who finally -- FINALLY -- realized they were more than best friends and finally -- FINALLY -- got engaged at my brother's house in Idaho last winter. So, this was also in part a college reunion, albeit in a locale a teensy bit prettier than Baltimore.

 

Chris and I got to have our first date night in months (months!), even if it meant paying exorbitant resort-priced babysitter fees. In my next life, I'm going to spend my twenties on an island making millions watching movies while other peoples' kids sleep upstairs. But it was worth it. We needed it.

And if we thought Quinn was a water baby before, this trip just solidified that notion. We could not get him out of the water for more than five minutes during the day -- not to eat more than a bite or two of food, not to take more than a sip of a virgin strawberry daiquiri, barely to go home to sleep at night. Our saving grace was that we were sharing a villa with another family whose two girls are just older and just younger than Quinn, and peer pressure to eat dinner/brush teeth/wash the sand out of your hair works wonders. The kid is stubborn. No idea where he gets that.

We're all having a rough time adjusting to being back on planet Earth, back from island time and planet Florida and time with some of the best people I know, these friends who've been my friends for nearly two decades and who I don't see often enough even when I see them at three out of four weddings in two months. Cancer has amplified this point: there never seems to be enough time.

Congratulations, Beth and Shanon. The weekend was as beautiful as you two are. As an added bonus, you finally -- FINALLY -- got Quinn to nap, he was so worn out yesterday. I owe you for that.

Home. Sick.

There's nothing quite like returning home after an extended vacation--during which Quinn and I spent some quality time with some of my best friends and their kids, who are quickly becoming Quinn's best friends, too--only to be met with a low-grade fever, chills, and severe stomach cramping. It's like my body associates Phoenix with chemo and went ahead and got symptomatic three days before treatment. Nice work, Body.

We've been home approximately 42 hours, and I've spent 20 of them sleeping, and most of the other 22 racing to the bathroom. Yesterday, I tried not to snap at Quinn as he climbed all over me on the couch. "Please, not on my stomach," I begged him. "Mommy hurts."

"I hurt, too," the poor guy started repeating.

We spent Saturday afternoon watching a superb parenting mix of Backyardigans, Mickey Mouse Clubhouse, and Cars while I tried not to vomit on the couch.

I feel better today, but still not well enough to eat much other than bananas and toast. I have chemo tomorrow morning, so I'm sure that will improve things in the nausea department. Wink, wink.

Can't we just go back on vacation? It appears to be a surefire way to make me feel better.

We spent ten wonderful days in Maryland, DC, and Virginia, welcoming in summer in true summer fashion: marveling at lightning bugs, playing board games, eating steamed crabs and corn on the cob, watching fireworks, splashing in mud puddles after intense afternoon thunderstorms, celebrating a friend's birthday, and lounging around poolside.

All of which beats a stomach bug when it's 110 degrees out and you are facing chemo any day.

As Quinn put it when we were driving home from the airport Friday night, "I don't wanna go home! I wanna go mommy's friend's house!" I agree, buddy. I agree.

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.

Gimme a Break!

Because waiting for scan results didn't cause quite enough stress for us over the past couple of weeks, we decided to also list our house for sale and put an offer on another house last Tuesday. And the universe is hilarious because - yay! We sold our house! For full price! In only 5 days! Now I can stop trailing Quinn and our cats with a vacuum and a bottle of Windex.

But then we were outbid on my our dream home by a full cash buyer who paid $20,000 over asking price, so we're still looking for a place large enough to house all of Quinn's toys. Even after we donated all of his baby gear, his birthday in March is going to seriously test our storage capacities. You hear that, Uncle A? We're all set on dancing Elmo's!

We have until the end of March until we're homeless, so - you know - plenty of time.

And I got a clean scan! But then I slipped on our concrete floor and it turns out my damn arm is fractured. Lesson learned: fuzzy socks and turning a quick corner on polished concrete don't mix. Guess who's not laughing, universe?

The doctor confirmed it today, after almost ten days of excruciating pain. (Originally there was too much swelling to tell on the X-ray). Today, the day Chris left for Africa for three weeks. On doctor's orders I'm supposed to "take lots of Vicodin and don't lift anything." I'm not totally sure how that's supposed to work with a thirty pound toddler and no spouse. I mean, I get the lots of Vicodin part, but my twenty-two month old still likes to be picked "up, up, Mama!"

How do you say no to this face?

Somehow, with the help of my wonderful sister-in-law and the skycaps at the airport (and probably some bribing of flight attendants), Quinn and I are headed up to Sun Valley for what I hope will be a restful, relaxing weekend with dear friends. My broken arm means I won't be skiing, but that means I get to spend a little more time making snow angels with my boy. That's one way to ice my injury, right?