On Aging

What the heck, September? PTA meetings and a conference in NYC and turning THIRTY-EIGHT went and sucked up all of my time this month. Thirty-eight -- how did that happen?  PTA MEETINGS! Ha! Who am I?!

A friend wrote a Facebook post the other day about how time is a contortionist. I spent the other night looking at old videos of Quinn, crying my eyes out because where did my sweet toddler go? Who is this five-year-old who thinks it's hilarious to send his dad poop emojis in a text?

And then I looked at those puffy eyes of mine and realized I am super overdue for investing in an effective eye cream. And possibly also some botox. Five years of cancer has aged me and mama is tired.

About a week before I was diagnosed, 2011.

I recently commented on a blog post written by my college friend and author/mom/cook/all-around-badass Amelia Morris. Its themes are something I've been giving more thought to lately (maybe because suddenly I'm old enough that my child is SCHOOL-AGED and also because he regularly tells me I have a squishy belly. "Uh, because of you," I want to respond).

Amelia, a former gymnast, reflects on the Olympic sport of women's artistic gymnastics and the pressure we women feel to have it all and look good while doing so.

She writes:

"And while I agree that our ideas about the female body and its power are, indeed, unresolved, perhaps the gymnasts themselves have it figured out. Aly Raisman is performing world-class gymnastics; she looks good doing it; and (bonus points?) seems to have a really strong sense of self. As for me, as confused as I am—as torn between appreciating my body and criticizing it, between feeling endlessly grateful for motherhood and feeling trapped by it, between wanting to appear effortlessly pretty and wanting to literally put no time or effort into that aim—I remain hopeful for the future."

***

I didn't used to think of myself as high-maintenance, but between my eyebrow tattoos and eyelash extensions to give me a semblance of what I had pre-cancer, the occasional mani/pedi to mask the spot where I'm missing a toenail -- thanks again, chemo and five years of Avon Walks -- and actually having to do something with my hair for the first time in five years (NOT that I'm complaining and even though that something is often a ponytail), I feel decidedly higher maintenance than I'd like. I care about how I look. I wish it were effortless but it just is not any more.

New eyebrows (about 8 months ago)!

And don't even get me started on fillers and lip plumping and teeth whitening. I am not there yet. Yet. But the immobile foreheads of every twenty- and thirty-something in my yoga classes reminds me that I am in the minority. I have a plastic surgeon, yes, but for far more terrifying reasons.

Or maybe this focus on our looks is just a phenomenon where I live? But having read Wednesday Martin's Primates of Park Avenue as part of a book club last year (and every cover of every Star or US Weekly at the newstands ever), I don't think so. Also, Amelia doesn't live in Arizona, either.

Still, as much as I lament the scowl lines in between my tattooed eyebrows, or wish I didn't have such extreme bags under my eyes, as much as I'd love to have Kerry Walsh's washboard abs, my comment on Amy's post was about how it took cancer to allow me to -- almost -- stop criticizing and spend much more time appreciating my post-baby body. How crazy is that? That it took being told I had a deadly disease to learn to pump the brakes on being an ass to myself.

Now, Quinn is 5 (and a half), I have purplish scars across my reconstructed chest, a softer belly than before pregnancy, neuropathy in my right hand from radiation or surgery or both, and an inability to move or stretch in ways I could before cancer because of those surgeries and radiation. So much for the cover of Yoga Journal. 

But I appreciate what my body can do. Hike mountains. Show up to volunteer with a class of kindergarteners. Dive into a late-September pool to the delight of my boy, who knows it's going to be too cold for me (it is). I appreciate what my body has done. Recover from surgeries and radiation. Run marathons. Give birth. Breastfeed. I mean, how awesome is that?! I grew and sustained a LIFE with this body.

I watched this video a while back with tears streaming down my cheeks, and then it showed up again in my Facebook feed a couple of months ago.

I hadn't remembered the part about the women who'd lost their boobs. Pay attention at 2:50. Actually, pay attention to all of it. You are amazing, and beautiful, and strong. All of you. Even at 38 years old.

Who wears a wig to Pilates anyway?

Wasn't it just Christmas? Where did January go? How are the Seahawks not in the Super Bowl?

I've spent January mourning the losses in our metastatic community, trying to enjoy sleep-deprived new-puppy-parenthood, briefly visiting my brother and his family in Spokane, and making room for a few other advocacy endeavors I've got going (stay tuned!) Not to mention start-of-the-year doctors' visits, dental check-ups, and a biopsy of a weird spot on my elbow thanks to an overly-cautious dermatologist.

I haven't found much time to collect my thoughts these past few weeks. I've been waiting for my words to come back. Waiting for my anger to subside.

Related, I find, to letting go of some anger is me trying to work on my patience. It was my one resolution for 2016. As one mama put it on theglow.com:

"I wish I was better at patience. I had a lot of it when it was just River, but I physically feel my patience going throughout the day, in a way it used to not go. Sometimes I have to lock myself in a bathroom to gather it up again. And it isn't just the kids, it's life. Kids with life, it's a lot, and takes a toll on your patience. I try to think in my head a lot when I feel myself getting frazzled. It's good to just check in with my inner self and remind it that nothing is more important than the right now, so focus on right now." - honest and beautiful words from @latonyayvette which resonate deeply with all mamas as we try to be in the moment with our kids #theglow #motherhood #honesty #patience #inthemoment

A photo posted by The Glow (@theglowdotcom) on Jan 25, 2016 at 6:49pm PST

"Nothing is more important than the right now, so focus on right now." Yes, a million times this.

Last night I dreamt that I had a bad PET scan, even though I'm not due to cross that bridge for another couple of months. I dreamt that I had to start broad-spectrum chemo again, that I was losing my hair but didn't tell anyone until my friend noticed I was wearing a wig at Pilates. I woke myself up crying. Scared. Angry. Quinn was in our bed, between Chris and me, and I snuggled up against him, inhaling his little boy scent, feeling the reality of his warmth and the steadiness of his breath until I was able to steady my own. It was -- for now -- just a bad dream.

Nothing is more important than the right now, even at 3:30 in the morning. But, man, do cancer and mortality and friends dying know how to mess with a girl's subconscious. My nurse (and friend) at my infusion center tells me there's a pattern to these deaths, that she's been doing this long enough to know January is the worst. People set goals for the holidays.

In that case, I'm setting a goal for Christmas of 2074.

I hope to get back to some sort of regularity here sometime soon, but in the meantime I've been busy focusing on the right now -- busy with soccer practices and birthday parties and puppy hikes (much shorter than regular hikes) and trying to think of ways to better serve this metastatic community to which I belong. As I said, I have some things brewing. I hope they'll pan out. I hope they'll make you guys proud. Please bear with me.

I'm sure I'll be a better mom in November

WE'VE ALMOST DONE IT!!! October is just about done. And thank god, except it means my November scans are right around the corner.

Since my diagnosis, not a day has gone by that I haven't thought of breast cancer, at least a little bit, but that is amplified SO LOUD in October, and not always in ways that help. Then scanxiety sets in (albeit on the early side AGAIN this time around) and I start popping Xanax every night like it's a vitamin. I am so lucky in so many ways, but also so tired sometimes. This disease can wear you out.

In my frustration with things like the NFL fining one of its players for trying to honor his dead mother and my general October-and-scan-induced edginess, I've found myself having to explain to Quinn what it means to have a short fuse because mine has been downright itsy-bitsy. 

I haven't felt like the best mom, and this blog post about swearing in front of your children hit very, very, very close to home.

In front of Quinn, I try to say "sugarfoot" or "son of a gun" or "fudge knuckle" or some other hokey variation on actual swear words but I don't always get it right because that is not always what I actually deep-down WANT to say. And I don't ever swear at Quinn, so much as say things like, "You're smart. USE YOUR BRAIN," when he's asked me why he has to use his napkin instead of his shirt for the twelve-thousandth time. So that's not exactly nice parenting. And then I might swear AT traffic when Quinn is in the car with me, and I don't know if that's any better. 

I've also found myself crying real, actual tears when Quinn told me a couple of weeks ago that Loki (our cat who frequently scratches at our dining room chairs and occasionally throws up all over our fabric couch but never on the hardwood floors) is his favorite "person" in our family. Oh, how that boy loves that cat. I might have been a little offended, which is of course a little ridiculous.

Sometimes I think I need my therapist on speed-dial. (Is there even such a thing as speed-dial anymore?)

***

I had a dream the other night that Quinn was as tall as me, and I got to see him -- even in the haziness of my dreams, as a 65-inch-tall boy who was almost a young man. He was perfect and handsome and pure goodness. 

I woke up with a tightening in my chest that hasn't quite gone away the last few days. Am I over-doing it at Pilates? Is my anxiety giving me near-constant panic attacks? Are there tumors growing in my chest wall again? 

Will I get to see my boy be as tall as me in real life?

photo by the uber-talented Jodi Lynn

***

I have had so many friends find out they have progression this month -- in their brains, lungs, stomach, spine, skin, the list goes on and on -- and the truth is, I am scared shitless that the boogeyman who is cancer could show back up in my life again at any moment. Metastatic breast cancer is THAT unpredictable, and as amazing as some treatments are, there is still no cure. My fear has been acting out this month, and maybe it does every October. It's a spooky fucking month.

(Sometimes substitute words are just not at all adequate.)

***

I wrote all this, and then I went to a yoga benefit class tonight for City of Hope, a cancer treatment center and research facility. I dragged myself there, is more like it. I didn't want to go, didn't want to navigate my way downtown and to the venue and deal with traffic and find parking and all of the STUFF that goes with getting somewhere on a Friday night. (Hello, middle-age, nice to meet you!)

My worlds collided tonight and it was pretty awesome. Yoga in the outfield at Chase Field for @cityofhope with @spiritualgangster and a beautiful community of yogis. @nikmeier #YogaforHope #spiritualgangster #namaste #phoenix

A photo posted by Nicki Adair (@nickiadair) on Oct 30, 2015 at 9:45pm PDT

I practiced yoga with a bunch of other people on the field where the Diamondbacks play, did my forward folds and crow poses and shoulder stands under the stadium lights, which was totally surreal. I slowed down a bit. I was reminded to breathe. And you know what? It helped. I might not need a Xanax tonight.

Around the Web: Sore & Bruised Edition

I'm pretty sure I gave myself whiplash last weekend when I tripped on the laces of my sandals during an aggressive game of duck-duck-goose. One minute I was the "goose" chasing Quinn, the next I was smacking the cement with such force and velocity that my sunglasses went flying, I scraped most the skin off my right elbow, and all of my pride went floating away like a lost balloon.

Remember? I told you I'm a bit of a klutz.

I woke up on Monday with a headache and a sore neck, both of which have gotten better as the week goes on. My elbow too. That hasn't stopped me from wondering if I have brain mets due to the headaches or bone mets due to how sore my elbow is. 

Hey, I never said cancer made me more rational. 

Speaking of sore, I've started a new exercise routine, although calling it a routine is a bit of a stretch since I've only gone four times in two weeks. I'm started doing Pilates with a couple of girlfriends after one of them roped the other two of us in like cattle about to be slaughtered.

My texts with my other new-to-Pilates friend have gone a bit like this over the last 24 hours: 

Me: My calves are burning!!!!

My friend: I mean, my calves hurt so bad that if I stay stagnant for too long, the second I get up, I almost crumble.

Me: Every time I go to stand up, my legs seize up. I might sleep on the couch just so I don’t have to move again.

My friend: OMG...I know. I just walked from the couch to the desk (and you know how short of a distance that is) and about fell over.

Here's the deal, though. I figure if I exercise enough that I'm always sore somewhere, it somehow makes the pain less likely to be from cancer. Or takes my mind off of cancer (a little, anyway).

And speaking of cancer, here's why you're here, the things I saw in the world of research around the web this week.

***

Do Patient Navigators Actually Help?

What do you think? Have you used services like this? Would you? I haven't, but then I kind of have because I have my husband Chris, who is basically my extra set of eyes and ears and most definitely my extra memory. 

Also, this: 

"In the end, many say, debating patient navigation may be asking the wrong question. Why not, they wonder, spend the money and energy needed to overhaul the entire cancer-treatment system?

“One question worth asking is why do [patient navigators] exist,” Ramsey said. “And the reason is the cancer community has done a very poor job of helping patients through the system. The fact that navigation exists is kind of an indictment of the cancer-care system.”'

Why BRCA Genes Eventually Resist Cancer Treatment

"Now, scientists at Yale School of Medicine in New Haven, CT, have pinpointed a key molecule called co-factor DSS1 that helps the BRCA2 gene to repair DNA.

They note how "DSS1 acts as a DNA mimic," and without it, BRCA2 mutations cannot do their job of repairing DNA - which is key to the survival of cancer cells.

The team says the findings point to a possible way to decrease drug resistance in cancers involving BRCA genes.

Senior author Patrick Sung, a professor of molecular biophysics and biochemistry, suggests drugs that interfere with DSS1 function could be developed and used with existing drugs to overcome this resistance."

A Clue About Why Brain Metastases Occur, And One Possibility for Stopping Them

This is at a way early stage (mouse models), but looks promising. 

"Removing a single protein from the blood could stop breast cancer spreading to other part of the body, scientists have discovered.

They identified a key molecule, which triggers the growth of blood vessels in tumours that have spread to the brain - a common secondary site for breast cancer to spread.

By withholding the protein, called DOCK4, a particular part of the blood vessel did not form as quickly, meaning tumours grew at a slower rate, scientists found.

Dr Georgia Mavria, from the University of Leeds, said the discovery could help develop new drugs and identify people at risk of their breast cancer spreading."

How Many Studies Like This Do We Need?

"The increased use of mammograms to screen for breast cancer has subjected more women to invasive medical treatments but has not saved lives, a new study says.

After reviewing cancer registry records from 547 counties across the United States, researchers concluded that the screening tests aren’t working as hoped. Instead of preventing deaths by uncovering breast tumors at an early, more curable stage, screening mammograms have mainly found small tumors that would have been harmless if left alone."

It's also very much worth reading this piece by the always-insightful Elaine Schattner, who writes, in part: 

"But mainly I’m concerned about the author’s definition of overdiagnosis, and their conclusion. In the paper’s second paragraph they write: “However, there are increasing concerns that screening unintentionally leads to overdiagnosis by identifying small, indolent, or regressive breast tumors that would not otherwise become clinically apparent.”

Yes, there are fast and slow breast tumors; pathology varies. As I will discuss in a post forthcoming, knowing the details of breast cancer should enable women and their doctors to avoid overtreatment, which is a real phenomenon and can be separated from overdiagnosis.

But regressive breast cancers?"

Exactly.

Adding Progesterone to "Double Positive" Patients' Protocols Could Increase Survival

"It turns out that when progesterone sticks to the progesterone receptor in cancer cells, it alters how the oestrogen receptor works, and effectively puts a second brake on tumour growth. Tests showed that mice given progesterone and tamoxifen had breast tumours only half the size of those given the drug on its own.

“Crucially, it provides a strong case for a clinical trial to investigate the potential benefit of adding progesterone to drugs that target the oestrogen receptor, which could improve treatment for the majority of hormone-driven breast cancers,” Carroll added. Details of the study are reported in Nature."

My Teammates In Their Own Words (Plus A Few of Mine)

I've mentioned once or twice that I'm about to lose the second toenail on my left foot. The same one on my right foot is in questionable territory. For about a week after the walk, every time I pressed down on my left toenail, a stream of blister liquid would squirt high into the air like the fountains at the Bellagio. The erupting has finally subsided, but my toe still throbs at the end of the day, a steady drumbeat bringing me immediately back to the 39.3 miles in Washington, DC the first weekend of the month. Plus another 4.8 miles criss-crossing Capitol Hill the Tuesday afterward to advocate to whomever would listen for an end to breast cancer. My feet were not entirely pleased, but they will recover.

A few of us in front of President Obama's house.

As my friend and veritable co-captain Ginelle says, it's not like I'm losing another body part. The blisters are painful. But as many shirts and temporary tattoos over the weekend read: "Blisters are temporary. Fierce is forever." And toenails grow back. Breasts, sadly, do not.

Ginelle brings me to near tears every time she describes the metaphors surrounding the walk: the pain and frustration when you don't think you can keep going, but then you remember it's temporary. It's only two days. The walk certainly isn't chemo, but it gives a peak into the determination necessary to push through when the going gets rough. Looking around, there are women and men in far worse shape, forging ahead despite their obvious limping. There are kids who've recently lost their mom and who stop at every mile marker to wipe away their tears and take a proud selfie. So you see all these people marching onward, and it pushes you to keep going, too.

I asked my teammates, many of whom were first-timers, for their thoughts on the walk. I am beyond flattered by what they had to say about me, and largely because of them I'm inspired to do this all over again next year. Here, in their own words, are some of their descriptions of our weekend in Washington.

Amy: Being part of it was simultaneously so difficult and so meaningful, and feels at the same time like a big accomplishment and yet also such a tiny drop in a giant bucket for what is needed. My main feeling seems to be thanks - thank you for letting me walk with your team and your friends, and thank you for letting me lend the support I can. The idea that maybe a few dollars that I helped raise will give women with no health insurance access to mammograms, or feed a few families when they are wanting to do anything but cook for themselves, is such an important one for me. And the hope that this foundation supporting mets research so that women like you can continue to be such amazing role models, mothers, and writers is just more than I can think or even talk about very eloquently.

Ginger: I now have an appreciation for the number 39. One of the most painful but rewarding experiences of my life. Despite my mental resolve to keep going, I kept feeling like my body was failing me--a perfect illustration for what survivors endure. Thank you to everyone who has supported us--you were all with me yesterday and today.

My 39 miles were dedicated to my mom, Betsy Elliott, who is a survivor of DCIS breast cancer (that is, ductal carcinoma in situ and caught early, thank goodness). She is recovering fully after a unilateral mastectomy in March of this year.

Now that my feet have begun to recover, I'm already considering next year's Avon Walk.

The 16 of us crossing the finish line on day 1.

Jess V.: It's amazing how many tears and thoughts that come over you as you walk this long walk. I feel so honored to have been a part of this team. Thank you, Jen, for leading us through a wonderfully rewarding weekend, yet again.

As I told [my husband] and the others who asked me how the walk went - this one was harder. I didn't train. I bought the wrong shoes (without much support). I said with confidence "I never get blisters" and got several epically huge blisters. By mile 10 on the first day I started to have significant tightness in my legs and difficulty walking with a normal stride. But it's really easy to get over that pain when you walk by a woman clearly in the process of fighting cancer. Suddenly your legs don't hurt as much and you realize how easy your pain is versus theirs.

I can't wait to do it again next year. I'll be signing up tomorrow just because I'm too wiped out to do it right now.

It was such a wonderful experience walking with you all. Looking forward to Avon Chicago!

Beth V.: You people are all so amazing, not only for participating in this amazing walk, but also with the fundraising. For a team of 16 to raise as much money as we did is incredible (obviously a testament to the smarts and savvy of our team, and especially our team leader, Jen!) As for the walk itself, I appreciated the collaborative nature of our team and how we stuck together. I didn't expect that a group our size would--especially in light of the many potty breaks--and was pleasantly surprised. Our solidarity as a team and commitment to an important cause so close to all of our hearts made this weekend particularly special for me.

Thank you all for a fun, positive, successful and memorable experience.

I look forward to seeing everyone again soon!

The kids who brought me to sobs on the trail, with a photo of their mom holding them as toddlers hanging from their capes. She died of metastatic breast cancer last year.

Kacey: My impressions from this weekend all come down to community. I was so moved by how many people came together to make this walk happen for us. I was completely blown away by the donations I received. The number on my personal page is a little off because I shared a lot of the donations I received with team members who were under the minimum a few months ago, but I think I raised a total of close to $8,000. Most of my donations were small amounts - it was a very grassroots effort! And many donors gave more than once.

When Nora and I organized our wine night fundraiser, we ended up with more silent auction prizes than we knew what to do with because businesses and friends were so generous. We were so worried that the night would be a bust and we'd end up giving away these amazing prizes. But we were shocked by how many people came out and the volume and amount of bids we received. It was truly inspiring.

The weekend of the walk, we had so many supporters. Dan and Sarah hosting us for a pre-dinner walk, Tim traveling down from MD to walk a few miles with us, my own husband trekking all over DC to find us so my kids could hold up a sign for a few minutes (and the baby could eat!), plus all the husbands behind-the-scenes who watched little ones for the entire weekend so their Moms could do this. That doesn't even include all of the strangers who stood on street corners, dressed in crazy outfits, cheered, handed out candy, high-fived, and generally kept morale up.

By mile 10 on Day 1 (just 1/4 of the way done), I really didn't think I would be able to keep going. Everything from my waist down hurt. But I thought about everyone who supported my efforts to be there and everyone who was relying on me and I just kept going. It was only two days of my life and nothing some ice and an epsom salt bath couldn't cure.

If being out there and being a part of the community that made this walk possible has in any way helped put an end breast cancer, then I'd walk it a thousand times over (perhaps after training a bit more, though?). Thanks so much for letting me be a part of this incredible team, I really do consider it my privilege to have been there.

Too many names.

Jessica D.: I was inspired to sign up for the Avon 39 in D.C. right after Jen and Team Booby and the Beast completed their 3rd walk in 2014 in San Francisco. I continue to be amazed by Jen’s strength, as well as the advancement of breast cancer treatment, and wanted to do all I could to raise money to continue research efforts in the field.

As I tend to do with any trip, event, or race (guess it’s the engineer, or now the ‘mom’ in me), I plan, make lists, check them twice, and worry about the little details. I set out on a training plan walking miles and miles around Tempe before dawn, rallied lots of support among my family, friends, and co-workers, and made sure I had all the right gear for the big weekend.

However, nothing can quite prepare you enough for how incredibly moving this event is. The support of honking car horns; the spectators providing countless high-fives, candy, baby wipes, and some tunes to put a beat in our steps; and most importantly, the bond among our team members that was solidified throughout the journey were more motivating than words can even describe. I am truly thankful for being a part of this memorable experience, and can’t wait to do it all over again! Thank you, Jen, for letting me be a part of it all!

Shelby: Every year I'm amazed by the impact this walk has on me. To say that walking alongside Jen and an incredible group of amazing women and men, for the third year in a row, is a remarkable experience feels like such an understatement. The weekend is absolutely amazing, emotional, inspiring, challenging, empowering, and rewarding as we raise money for breast cancer research and to fund access to care for those without the means. As soon as we cross the finish line, hand-in-hand with our awe-inspiring Team Captain, I look so forward to next year's walk. Thank you Jen for continuing to share your story, for inspiring so many, and for allowing us to share this incredible experience with you. I feel honored to have been a part and to have walked alongside each and every one of 2015's Team Booby and the Beast. Here's to Chicago 2016!

Gretchen: There isn't much to say that hasn't been said. I just wanted to say THANK YOU, Jen for inspiring us and for the opportunity to walk with you. Team Booby and The Beast is a powerhouse! This amazing group of men and women surrounding you is a testament to the absolutely fabulous person you are. Team, I was honored to walk with each and every one of you.

At the finish line on the National Mall.

What is Team Booby and the Beast All About, Anyway?

Today is a chemo day for me. This means I take Quinn to school, try to get in a workout because I know I won't be feeling up for one for another few days, have a little lunch, and then drive to the infusion center about half an hour away from my house.

Kathy or Wes will gather my vitals: weight, blood pressure, heart rate and oxygen levels, and temperature. Then I'll choose which recliner to sit in and wait for a nurse. Nickole or Angela will access my port as we chat about what we've been up to the past three weeks; mostly, we talk about our kids. "Take a deep breath," one says as she swabs the raised area on my chest with an alcohol pad. "Okay, now exhale," and I do, as a needle goes in and she takes a few vials of blood to test my blood counts, my electrolytes, my liver enzymes, my tumor markers.

Mostly, my labs look good. Then they hook me up to the infusion of pre-meds. I get anti-nausea drugs and steroids. By the time these are finished, I've been at the center about an hour. Then chemo starts. It doesn't feel any different. It takes about thirty minutes. Afterward, they monitor me for another thirty minutes to make sure I don't have any adverse reactions. A week later, I have to return for more blood work, just to make sure I still have enough platelets, still have enough white blood cells, still am not anemic. Mostly, I'm okay.

My routine has been exactly the same, every third Monday and then again the next week, for nearly two years. I've been visiting this infusion center at least as often for three and a half years, since I was first diagnosed with metastatic breast cancer in August 2011.

I know how lucky I am to have the care I do. I am lucky that my infusion center visits only take a couple of hours (plus driving time), that I am able to drive myself to treatment, that my insurance pays for nearly everything, that I have a dear friend who comes to visit with me most treatment days, that my nurses know me and my family and take an interest in our lives, that my treatment is working. I could go on and on. I am so, so lucky.

Not everyone has these luxuries. Too many people don't have ready access to quality healthcare. It's too far to drive or too expensive, or the medicine doesn't work because we still need more answers about more types of breast cancer. I know too many people who've died because of this disease, and many, many more who are hoping their next chemo combination will work so they can have a few more months (or, God-willing, years) with their loved ones.

***

If you've been following my blog for a little while now, you know I've been walking in the Avon Walk for Breast Cancer since 2012. I was bald that first walk and in the middle of some intense treatment, but Avon asked me to be the Survivor Speaker at the opening and closing ceremonies. I'd never spoken in front of 3,000 people before, but that crowd of people gave me courage.

{after my first walk, Santa Barbara, 2012}

As I crossed the finish line that year, holding hands with my unofficial teammates Ginelle, JT, and Sheryl, I was overcome by such a rush of emotion that I immediately signed up for another walk in 2013. And then another.

{after my second walk, San Francisco, 2013}

Why Team Booby & the Beast?

Last year, the three women who walked with me and I decided to form a team, Team Booby and the Beast, which allows us to fundraise together or individually. Mostly, though, it is a way to show our solidarity with one another, to stand and walk and cross finish lines against this disease as a unit.

{following walk number three, San Francisco, 2014}

This year, SIXTEEN of us are on this team: Alana, Amy, Beth, Beth, Daurie, Ginelle, Ginger, Gretchen, Jess, Jessica, Kacey, Leslie, Nora, Rashmi, Shelby, and myself. We have already raised more than $20,000. We are aiming for $50,000.

We will all walk more than 39 miles over the first weekend of May in Washington, DC. We will probably wear obnoxious amounts of pink and undoubtedly there will be signs cheering us on that say things like: "Save the Tatas." I will want to remind those people that it's not about tatas, it's about lives but I won't say anything because after all they're cheering us on on a Saturday when they could be running errands at Costco.

Undoubtedly, some people will walk for a mom or sister they've just lost, and I will start crying, right there on the trail, when I see the emotion on their faces. Most likely, the volunteer who hands out shirts at the end of the walk will be surprised when I ask for a survivor shirt. "You're too young!" she'll say, and I'll think I wish.

I will be reminded over and over again how lucky I am.

Why do I walk?

I was recently asked if my fundraising was to help with my personal medical expenses. It is not. I am remarkably, unquestionably fortunate in that regard. I thank my lucky stars every single day. My husband's job at Arizona State University provides us with exceptional healthcare benefits, and our out-of-pocket expenses over the last few years have been relatively minimal.

Even after I had to leave my career as a lawyer, even given the loss of my income and the inconvenience/nightmare (depending on who you ask) about how we would repay my student loans, we are okay. We don't always repair what needs repairing in our house right away, but we have a house. In a safe neighborhood. We have two cars and a garage to park them in. Our cupboards are full. I can afford to take Quinn to school while I get treatment. This is no small thing.

We also have a strong community of friends and family who've stepped in over and over and over again to support us as we coped with the shock of my diagnosis, navigated less daycare/preschool after I left my job, my ongoing treatment, and a surprise surgery while Chris was on his way to a conference in Tennessee so that he can keep his job and we can keep our healthcare.

So I walk because I owe it to the Universe. I'm not trying to be trite or flippant. I walk because I have been luckier than I ever could have imagined, and this is the best way I know how to give back right now. I walk to help women who are not as fortunate, to raise money for research funds -- for a cure someday, yes, but also for more advancements where they're terribly needed right now, so that more women can have more years with the ones they love. So they can raise their children and love their spouses and drink a glass of wine with their best friends. So they can worry about work deadlines or meal planning or other minutiae instead of cancer and all its devastation.

Why the Avon Walk?

There are many walks/runs that support breast cancer research and education. I chose Avon because of their commitment to funding care for women who wouldn't otherwise have it. Because they give millions of dollars in grants to research. And because they didn't shy away from featuring my story of living with Stage 4 breast cancer; instead, they asked me to tell it to 3,000 people while I shared a stage with Fergie.

Since 2003, the Avon Foundation for Women has organized several walks each year in select cities around the country. The money raised funds local research facilities, services for women in underserved communities (including screening and treatment), and provides support for the families of those affected by breast cancer.

In Washington, DC, grants have been awarded to recipients that include the Johns Hopkins University (my alma mater), the Capital Breast Care Center, and Food & Friends, which provides meals, groceries, and nutrition counseling to people living with life-threatening illnesses such as cancer.

***

I know this has been the longest post ever, but this is important to me. It's my little tiny way of paying it forward. If you'd like to support me or my Team, you can click here, or stay posted for details on an upcoming fundraiser in the Phoenix/Scottsdale area this spring which will be headlined by my friend Jenn, a woman and friend whose generous spirit I strive to emulate. Stay tuned.

{my friend Jenn Chiarelli, photo source}

And thank you. I couldn't do any of this without you all, and I love you all for it.

My Head Is So Far Up in the Clouds...

My head is so far up in the clouds and I don't even have a fun excuse as to why.

There is nothing quite like getting hit with a sinus infection and recovering from chemo to start off a week. I sort of feel like my head is floating above my body somewhere, but somehow it is still throbbing. Unfortunately, it is not too detached for that. Plus, I may have given myself whiplash with the intensity of some of these sneezes. My neck is sore, my eyes feel like they're swimming in slime, even my teeth hurt.

I'm not trying to complain, so much as set out a list of reasons why our house looks like such a wreck (sorry, honey).

A friend recently wondered at how I get everything done, and then I look around my house on a day like today, when I've barely left the couch except to drop Quinn off at school, and I want to set the record straight: I do not even come close to getting everything done.

There are piles of shoes by the door, beds unmade, laundry that needs to be folded, laundry that needs to be washed, and I have no earthly idea what we're having for dinner tonight, but a rotisserie chicken is sounding pretty accessible right now.

I want to do a post about my intentions for the new year, about goal-setting and sugar-reducing and my feeble attempt at the Whole30 thing. But that might have to wait until these antibiotics kick in. Right now, I need a nap (or a cup of coffee).

{5 days ago, when my head was in the clouds for a far different reason}

I just wanted to put it out there that some weeks I do have a decent amount of energy, and I take advantage of it when I can. On those weeks, I go hiking, I go to yoga, I sometimes even fold laundry. I spent a good amount of time over the holidays not thinking a single lick about cancer. I was able to put it so far to the back of my mind that I didn't even care that I had too many glasses of champagne on New Year's Eve, watching Fergie ring in 2015 with some truly awful performances in Times Square. I am so grateful for that. Really.

But on weeks like this one, I barely get out of my pajamas for days in a row. There is no balance, there are just ups and downs. This week, cancer is once again at the forefront, if only in side effects from treatment. At times like these, I remember that I'll feel so much better in a couple of days. (This too shall pass.) I think I said it here before, but the wise words of my sister-in-law bear repeating: You can get through any moment, and eventually, those moments add up and you're on the other side of whatever awful thing you were facing.

The fog will clear, my energy will return, and with any luck I'll be able to breathe through my nose again.

Around the Web

Call me naive, but I didn't know it would be quite this hard to introduce our cat to our dog. The cat has spent the better part of the last week holed up in a closet in one of our bedrooms. But Luna-Dune, as we've all started calling her, is fitting in with our family nicely. Most importantly, she appears to have sated my urge to have/adopt/somehow acquire another child. This is exhausting enough, thank-you-very-much.

(But look how cute she is...)

When I wasn't busy Instagramming photos of my dog, here's what caught my attention on the internet this week.

Breast Cancer Vaccine Shows Promise (but Phase II Trial Will Exclude Advanced-Stage Patients)

This makes me both hopeful and terribly sad that metastatic patients won't be included in the next phase of research.

"If we give the vaccine to patients at the beginning of treatment, the immune systems should not be compromised like in patients with metastatic disease," Gillanders said. "We also will be able to do more informative immune monitoring than we did in this preliminary trial. Now that we have good evidence that the vaccine is safe, we think testing it in newly diagnosed patients will give us a better idea of the effectiveness of the therapy."

Did You Hear What Melissa Etheridge Said About Breast Cancer?

That her words "stirred debate" is a bit of an understatement, at least in the breast cancer community.

"Singer Melissa Etheridge's comments that breast-cancer genes can be turned on or off by diet are being challenged by doctors and others, who say they are hurtful and could mislead millions of people."

And Speaking of Genetic Screening...

"Most patients with triple-negative breast cancer should undergo genetic testing for mutations in known breast cancer predisposition genes, including BRCA1 and BRCA2, a Mayo Clinic-led study has found. The findings come from the largest analysis to date of genetic mutations in this aggressive form of breast cancer. The results of the research appear in the Journal of Clinical Oncology."

And Speaking of Triple Negative Breast Cancer...

"Scientists at A*STAR's Genome Institute of Singapore (GIS), in collaboration with local clinicians and colleagues in the USA, have identified a biomarker which is strongly associated with triple negative breast cancer (TNBC), a highly aggressive carcinoma that often has early relapse and metastasis following chemotherapy. The newly identified biomarker, a gene called RASAL2, provides a target for developing new therapeutics designed to treat this often deadly disease."

Saying Good-Bye Far Too Young

{photo credit}

Another mother gone too soon because of metastatic, triple negative breast cancer.

"And who are the brave ones in the country's breast cancer conversation? They're so quiet as to be all but ignored. They're the women with metastatic disease, especially the young women I get chemo alongside at Dana-Farber Cancer Institute in Boston, the ones who really may not see their children graduate from kindergarten, let alone high school."

Another Reason I'm Lucky: Where I Live

"In the United States, 9 out of 10 kids diagnosed with acute lymphoblastic leukemia will live. In Jordan, the survival rate is 16 percent.

And while cervical cancer patients have a five-year survival rate of over 70 percent in countries like Mauritius and Norway, the rate in Libya is under 40 percent.

That's the sobering news from the largest cancer study ever published. It surveyed more than 25.7 million patients and reveals a huge gulf in cancer survival worldwide."

3D Mammography Improves Cancer Detection in "Dense" Breasts

"Our findings are extremely promising, showing an overall relative increase in the cancer detection rate of about 30 percent," Dr. Skaane said. "Stratifying the results on invasive cancers only, the relative increase in cancer detection was about 40 percent."

Getting Off the Couch Could Save Your Life

"Women with breast cancer who engage in physical activity, even if at moderate level, have a lower risk of death, cancer-specific or not; according to new research presented yesterday at the 2014 World Cancer Congress in Melbourne, Australia."

The Daily Show Takes On "Fracking for the Cure"

The Daily Show
Get More: Daily Show Full Episodes,The Daily Show on Facebook,Daily Show Video Archive

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.

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?

This Crushing Fatigue

I had chemo last Monday. Every three weeks, indefinitely. 

Last Wednesday, I went to a yoga class and ran into one of my regular instructors in the studio's lobby. She asked how I was doing. "Okay, just a little exhausted from chemo this week," I told her. "Oh, is this just maintenance stuff?" she asked me. "Sort of like that," I replied. Most people don't understand that my hair could be growing, I could be in remission, and still need chemo. Most of the time, I don't get into it.

Until scientists find some better detection methods and can tell me definitively that there are no breast cancer cells left, I will probably be on some sort of drug to keep this at bay -- just in case. As well as I'm doing right now, I am not willing to risk taking this safety net away, even if I have been flattened -- crushed -- by the fatigue of it.

According to the website www.chemocare.com, cancer-related fatigue is common: 

What is fatigue?

Fatigue can be confused with tiredness.  Everyone gets tired.  In fact, it is an expected feeling after certain activities or at the end of the day.  Usually, we know why we're tired and a good night's sleep will solve the problem.  Fatigue is less precise, less cause-and-effect.  Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness, not relieved by sleep.  It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or longer).  Fatigue can have a profound negative impact on a person's ability to function and quality of life.

What is cancer-related fatigue?

Cancer-related fatigue (CRF - sometimes simply called "cancer fatigue") is one of the most common side effects of cancer and itstreatments.  It is often described as "paralyzing."  Usually, it comes on suddenly, does not result from activity or exertion, and is not relieved by rest or sleep.  It may not end - even when treatment is complete. 

What I'm on is not as harsh as the toxic chemo-chemo I used to be on. This is no Taxotere or Carboplatin. But it is still cumulative (or I am just getting older and less adept at recovery). After 14 months of Kadcyla and almost three years since my diagnosis, I am wiped out. 

I don't have the words for how tired this chemo makes me. I was never much of a morning person before cancer, but now I am groggy until mid-afternoon. I am cranky and ornery and feel decades older than my thirty-five years. I feel like I'm moving through mud. I am irritable and short-tempered and I cry at the slightest frustrations because I don't have the energy for a more measured reaction.

Anemia isn't to blame; my blood counts consistently look okay, which was confirmed again this morning. I'm getting what most experts say is enough sleep per night: about 7.5 hours, give or take, depending on steroids or Quinn's sleep gymnastics or my anxiety levels. It's too hot to hike, but I'm still making it to a fairly intense yoga class three times a week, most weeks. (Though sometimes I think I go to yoga to spend most of my time in child's pose, resting on my sweaty mat.) I finished my 39.3-mile walk.

{Photo credit}

Am I overdoing it when I feel well? Is it being a parent to the energizer bunny? Is it the heat of the Phoenix summer? Am I not drinking enough water? Enough coffee? And the worst: is the cancer growing again?

I'll feel better in a couple of days. I'll make it to yoga again this evening and spend less time in child's pose than I did last Wednesday. Quinn and I will have the day together tomorrow, inventing new ways to beat the heat (I'm thinking ice-skaing lessons for both of us might be in order soon). We'll go to California for Chris's 20-year high school reunion.

And then I'll have a week and a half of feeling nearly normal before this cycle begins again. Just enough time to almost forget how sluggish I'm feeling now. 

Are you sidelined by chemo-related fatigue? How do you combat it? What other side effects do you take on in order to keep on keepin' on?

And We Walked . . .

We did something a little different this year: we formed an official team for fundraising, Team Booby and the Beast. It was so official, we had shirts made.

My team included my best friend in the world, Alana, who reminded me we've been friends for going on twenty years; Shelby, another amazing woman I've known half my life; and Ginelle, who's married to my husband's best friend from childhood.

The four of us raised an impressive $16,065.29. Yep, that's me tooting our own horn. What can I say? I'm proud of us. Thank you to all our generous supporters for making this happen. The San Francisco walk alone raised $4 million this year for research and support services, including chemo and diagnostic tests for those who can't afford it. 

I want you to know a little more about these teammates of mine, these women who come out year after year to wreck their feet with me and beg their networks for donations so that one day, we can say we helped end this disease.

Alana came to visit me when I had my last round of chemo #1, and got my news that Christmas that my first post-chemo scan was squeaky clean. She is the only person who's been with me to the dingy part of the hospital where I used to have my PET scans (lucky her). On the walk, Alana is the one who will suggest jogging for a bit to change up the muscles you're using (and the thing is, it actually works). She spotted the girls handing out mimosas at mile 24, and made sure we all stopped to grab a cup. When we realized the buses to the start left at 5 a.m. on day one, she suggested we Uber it to the start instead, which meant we got to sleep in until 5:30. Also, she designed our team shirts. In short, she makes my life easier and more fun and far more beautiful.

Shelby is a friend from college, one of the women who cut off her hair to make a wig for me. She is also a researcher at Genentech, and was the first person who made me feel at all better about the fact that I had Stage 4 breast cancer. She talked to me about Herceptin and gave me confidence that I could do this. Shelby is as emotional as I am, and wept with me as we crossed the finish line, the four of us holding hands. We were saved by the guy handing out free It's-its, a San Francisco ice cream cookie treat I'd never experienced but now crave daily. Shelby still reminds me that I'm doing this thing, this beating cancer thing, and almost more than anyone she makes me feel okay about my diagnosis. I'll write more on Shelby and Genentech in another post soon.

Ginelle hardly knew me three years ago, beyond the fact that I'd married her husband's best friend, but when I was diagnosed she left her family to come visit and cook meals for our family. Last fall, she treated me to a weekend at Canyon Ranch, which has to be the most relaxing place on earth. I'm pretty sure we'd have been friends regardless, but cancer sped up that process. Some people run away from the burning building; Ginelle is the type to run straight into it carrying ice water and oxygen masks.

Ginelle is so prepared, we dubbed her the team girl scout. She kept us supplied with electrolyte powders and gummies, bandaids, body glide to prevent blisters, mole skin when we got them anyway, scissors, foam rollers, Advil, Epsom salts, and things we'd never even heard of, like silicone toe caps that I probably should have used, given the state of my toenails right now. She kept us on schedule in the mornings and ahead of the pack so that we were even the first to use some of the port-a-potties on day two.

All four of us, our feet hurt. We had blisters and bruised toenails, sore bunions and throbbing arches. We were chafed where our sports bras rubbed too tightly. Our hips and knees ached, especially walking down those steep Marin County hills. We were so exhausted we were delirious and punch drunk.

Which may explain why we immediately signed up for another year. We'll be going back to my old stomping grounds and walking in DC the first weekend of May, 2015. We'd love it if you'd join us, too.

Training Walks

It's hard to train for endurance when the temperature is already in the 90s by 7 a.m.

I've walked 39.3 miles before, so I'm not terribly worried about my Avon Walk next month, but I'm also prone to being delusional/overly optimistic/a glutton for punishment. Still, I'd like to get a couple of distance walks in in the next few weeks, if only to break in my (yet to be purchased) shoes. You know, to remind my hips and knees and toenails what it's like to plod on and on and on for hours on end.

Chris has a couple of work trips coming up, though, so it will be just Quinn and me for five out of the next six weeks. And, yeah, Quinn has school a couple of days a week, but I am not testing my ability to not melt here. By the time he's in school, it's already in the triple digits. No thank you.

Bottom line: unless we drive to California and find a babysitter, I think my outdoor training walks have come to a close for the summer. Here are some photos of my walk (okay, hike) this morning. Squaw Peak, I'm gonna miss you.

Thirty-Nine Point Three

As you may or may not know, I'm walking in my third Avon Walk for Breast Cancer in San Francisco this July. It is a grueling and exhilarating two-day, thirty-nine-point-three-mile walk through the city, across the Golden Gate Bridge, and up the hills of Marin County (seriously, they never seem to go down).

{photo credit}

When I did my first Avon walk in Santa Barbara in 2012, I was about halfway through six months of high-dose, intense, ugly ugly ugly chemo. I signed up for that walk at the last minute, giving myself just over five weeks to train and raise the $1,800 minimum. I was shocked as the donations poured in and topped out at more than $12,000. Avon took notice and asked me to be the survivor speaker at the closing ceremony that year. I even got to meet Fergie (that's me in the stranglehold in the lower left photo).

I signed up for walk number two almost as soon as I limped across the finish line that year. Last September, I walked San Francisco with eight friends and family. I'd been on my current drug Kadcyla for four months then; I'd just received news it was working, but there were still signs of cancer. I was once again a top ten individual fundraiser, and I vowed I'd keep walking and raising money and awareness for as long as I'm able. I am so lucky I'm still able.

Every year, I have this little seed of hesitation at the back of my mind, wondering whether I should sign up again, whether I'll be around in twelve months or healthy enough to walk. And then I say, "Fuck it," and sign up again, optimistic and hopeful and willing myself to keep doing this year after year, mile after mile, lost toenail after lost toenail.

I walk because I can. Because I believe we are on the precipice of monumental medical innovations and breakthroughs, and I want to do every little thing in my power to help drive that forward. Because Avon gives back to local communities to help under-served women get access to healthcare, gives to charities that support people as they're going through chemo (and I know firsthand how life-changing that is, to have someone else bring your family a meal when you're too sick to manage it), and funds cutting edge research -- the type that is bringing me smart-bomb medicine and ever-so-slowly shifting the tide in our collective fight against cancer.

If you'd like to contribute, you can visit our team page here: Team Booby and the Beast. Every dollar helps. Thank you for your kindness, your unwavering support of me and my family over the years (years!), and for walking with me -- in person and in spirit.

Next year, I'm setting my sights on Washington, DC. Who's with me?