My Tribe Will Understand My Memory Issues

I can’t thank this community enough for your support after my last post. I have cried reading through your comments and emails, Facebook messages and texts. I was scared to share this part of my story. I was worried about what it would mean for my identity (because once you put it on the Internet there’s no going back). I was afraid about what it might mean to break ties with a community that’s become a second home.

I shouldn’t have worried. This is my tribe, and its members are not victims who cry foul when another gets good news. Instead, I mostly heard: this is a miracle, and we love you. One friend said, "We are not kicking you out just because you lucked out!"

I love you all right back.

I still had cancer. I still experienced nearly five years of metastatic cancer. Now I just have different appointments and different doctors to figure out what the best path forward is for me. I’ve got more pain and sometimes even miss the damn steroids. I’ve got similar levels of fatigue (apparently it wasn’t just the chemo). My chemobrain might be slowly retreating, but it’s been replaced by an anxious fear that perhaps none of my doctors know what they’re talking about.

I still feel scatter-brained most days.

And Chris occasionally makes fun of me, but keeping track of it all, then and still: the appointments, kindergarten volunteering, and now, also, a job search, is not something I can seem to manage on my phone. Calendars don’t sync, I fumble with my thumbs when trying to enter new appointments into my device at the end of one doctor’s visit and get frustrated, and inevitably ask for a print out of my follow up visits anyway.

I know. I sound like a dinosaur.

I prefer paper. I prefer a hardcover book, too, although I recognize the convenience of my Kindle for travel. But for my calendar? For keeping track of my life? It’s a spiral-bound monthly planner all the way. My 2016 one has photos of Quinn interspersed throughout, and I'll probably hold onto it forever for that. And because this year has been something else, amiright?

The cover of my 2016 planner. Photo taken by Jodi Lynn Wall, April 2015

A few weeks ago, a woman reached out to me to share her breast cancer story, and to ask if I’d be interested in trying out some of the products she’d designed for the company she works for, Erin Condren. You might have heard of them?

Would I like some paper and pens and organizing pockets and even a journal, too? Yes, please! Sign me up. In ink.

{photo source: www.erincondren.com}

And then I learned that a portion a full FIFTY PERCENT of the proceeds of these products would be donated to the Pink Lotus Foundation, which aims to provide treatments for underserved communities. To help women who don’t have the means or insurance to help themselves when they’re diagnosed with breast cancer. See, corporate America? There IS a way to do Pinktober correctly!

***

Side note: do you know how much DISPARITY exists in breast cancer survival rates? That African American women are more likely to die of the disease, and that women of color are less likely to be given information about reconstruction options? That death rates are falling overall for breast cancer, but not nearly as quickly for women of color?

This is why I’ve walked the Avon Walk these past 5 years, with my team raising more than $100,000 to help underserved communities (and provide money for research). It is a cause near and dear to my heart because I have been fortunate, and I hope I don’t take a dollar of that for granted.

Do you remember my SIX THOUSAND DOLLAR shot? One shot. That I received probably fifteen times for just the cost of my copays.

Cancer is expensive. Treatment is expensive, transportation to/from doctor's offices is costly, and taking time off work to receive and recover from treatment isn't a viable option for many, many women. That's where organizations like the Pink Lotus Foundation and Avon come into play. I will support them as long as I'm able.

***

Last week, I went in to have my thyroid checked, because I’ve gained an unusual amount of weight since stopping treatment. My thyroid appears fine, but my joints all ache. I’ve got an MRI of my knee today, and tomorrow an ultrasound of my right armpit for a painful lymph node (or possibly just the spot where my implant is sewn into scar tissue).

I missed the third presidential debate to be on a flight to Houston to attend a metastatic breast cancer conference as a patient advocate. From what I understand, SNL did a fine job of summarizing the two candidates. I'm going to order my "Nasty Woman" coffee mug as soon as I'm done writing this.

Before my flight to Texas, I helped Quinn's class of 27 kindergarteners plant beet and carrot seeds in their class garden. Friday was a school book fair, this weekend we had two birthday parties, a soccer game, and ASU's homecoming. Tomorrow is our 8th wedding anniversary. I can’t keep track of all that in my head! Pre-chemo, I might have been able to, but now I rely on writing everything down.

And I never do sponsored posts here. I don’t even know if this counts as one. But I did receive some free products, and I am vouching for their awesomeness, so here is my disclaimer. Also, send some love to our tribe member Sam if you get a chance. She’s doing good work, and keeping me a little less scatter-brained in the process.

I Am Out of Words and My Heart is Broken

You'd think that with upwards of 112 of us dying every. single. day, the blows wouldn't be quite so crushing at this point. That perhaps we'd get used to it. Become numb, maybe. Like the rest of the world sometimes seems to be to our plight.

But every so often, a death (or group of deaths) comes along and it feels like we've collectively been punched in the gut. Our hearts ache. We are angry, and scared, and fucking tired. But we know we've got to carry on this fight -- even as we receive chemotherapy and take care of our children and look into clinical trials and try to enjoy every moment because we know more than most how limited time can be -- because who else will fight for us?

Who?

Forty thousand American women lose their lives every year to breast cancer, and yet researchers at the San Antonio Breast Cancer Symposium -- the LARGEST conference in the country addressing breast cancer research -- had almost nothing to say about metastatic disease this year. I was there. I waited for a breakthrough announcement. I listened to the recaps afterward, hoping I'd missed something significant.

Instead: "The mets research isn't ready for prime-time," is what I heard.

How long do we have to wait? Since my diagnosis, approximately 173,333 women have died of breast cancer in the U.S. alone.

"How can we express our urgency?" we asked.

"We get it, just keep doing what you're doing," we were told.

BUT CLEARLY IT IS NOT "GOTTEN" when nearly 8,000 clinicians can gather and have no news about stopping metastatic cancer, the only breast cancer that kills. Instead, we hear case studies about drugs extending our lives by a few months. 

A few months doesn't get me to see Quinn start kindergarten. A few months is not even close to enough. 

A few months ago, my friend Adrienne was told she had no evidence of disease. She took her little boy to Disney World.

On Saturday morning, she died of metastatic breast cancer that caused her liver to fail. Poof -- gone, just like that. Another little boy to grow up without a mom. A dad left to explain how she would have stayed if she could have. Another young woman dead long before she should be.

I am angry, and I am terrified. And this weekend, I felt like maybe we as advocates aren't doing enough to make our voices heard, like we let Adrienne (and about six others in my direct circle this week) down. But we can only do so much. We are exhausted, and doing our best.

Who else will fight with us?

I am at chemo today, 4 days before Christmas, wondering how I'm going to get everything done that needs to be done this week to create magic for my little boy because that's what my parents did for me, but also feeling so very lucky just to be here another holiday season. How deranged is that, to have to wonder about whether this Christmas might be your last because the average lifespan after a metastatic breast cancer diagnosis is 33 months.

At 52 months and counting, I am on high alert for when that other shoe might drop. Yes, I have hope I'll be here long-term. But I also know the realities of this disease. They've been especially hard to face this past week.

Quinn asked me what was wrong several times on Saturday, as I sank to the kitchen floor in my grief or cried as I heard the lyrics, "Home is wherever I'm with you..." on the radio while we tried to get in some last-minute Christmas shopping. He offered me big, strong, bear hugs, and all I could manage to tell him was that a friend of mommy's got some bad news.

What else is there to say to a four-year-old?

The truth is, I do not know what to say anymore. My heart is broken. Shattered in about 112 pieces today alone.

Please, please help us.

Officially Unemployed...And That's Okay

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

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

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

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

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

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

It is okay.

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

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

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

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

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

***

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

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

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

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

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.

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.

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.

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?

Flying Solo

This last week has been rough.


Chris has been out of town, analyzing soil samples twelve hours a day in a lab six floors underground somewhere in Minneapolis. Quinn and I are on our own. Quinn has woken me up most mornings by kicking me shortly after six a.m., moaning and groaning and whining that he wants "bres-feth". Over and over I remind him he has to stop whining, to say please, to not kick me, to no avail.

Mid-week, I told him he could go pour his own cereal and watch a show on his iPad. He responded, "I'm not old enough, mommy." Then: "Get me a waffle."

Me: "Say please."

Q: "Waffle please." Then, when we'd gotten to the kitchen, "I need green juice!"

Me: "Say please."

Q: "Please I need green juice?" he asked. Then he whined, "I don't want that plate! No! The orange one!" He was near hysterics over a damn purple plate. I hadn't even had coffee yet.

Me: "Say please, Quinn." I could feel myself growing more aggravated. I was ready to throw all of his plastic plates away, but I restrained myself. I mean, look at this face. You couldn't stay mad for long, either.



He ate two bites of waffle and told me he was done. I couldn't tell if my eyes were burning because they were so tired or because I was about to cry. Over a three-year-old and his waffle, for chrissake.

This morning, he didn't want to pick out an outfit, but didn't like the one I picked. He wanted to take his brown blanket to school and wrapped himself in it like he is a superhero, but then he didn't want it wrapped around his body in the carseat. He was mad that I couldn't fix it while I drove.

And when I dropped him off, he clung to me like he hasn't in a very long time, begging me to play with him just a little bit more, sobbing when I told him I had to leave because I have a dentist appointment and a doctor's appointment today. My heart ached. I couldn't wait to get a little break after an incredibly rough day yesterday, but when the time came to leave him, all I wanted to do was hold him and apologize for my impatience, my shortcomings as a Lego builder, my lack of energy this week.

I cried to Chris on the phone yesterday (Happy Father's Day!) because I'd seen a little girl in Quinn's class writing her OWN NAME on a piece of artwork last week. She'd drawn a picture of her mom in a red dress, and it looked like an actual mom in a red dress. Quinn scribbles in green and calls it a map to our house. I can't even take the time to get him to hold a crayon correctly, let alone teach him how to write letters. I'm pretty sure he thinks the alphabet goes "A, B, C, Q, R, S, W, X, Y and Z."

I try so hard not to compare, and maybe I wouldn't if I knew what was normal, what it was like to raise a child outside of cancer treatments, what it was like to have energy more than fifty percent of the time.

I had chemo last Monday, the day after Chris left for Minnesota. That night, I was up late because of the steroids, but the rest of the week I went to bed at the same time as Quinn: 8:15 or so. I got more sleep last week than I have in months, and I was still dragging most days. My head felt like it was in a vice, either from the chemo or the triple-digit heat, I'm not sure. Quinn and I watched an excessive amount of television, including "How to Train Your Dragon" at least three times.

Chris is home next week for a week, then off again for a couple of weeks in Kenya on the same day I have my next round of chemo. I was so panicked at the idea of another week like this last one, I called my mom yesterday and begged her to come visit the first week of July.

As Quinn wanted me to know as he clung to my leg this morning, sometimes you just need your mommy.

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.

A Chemo-Week Godsend

Yesterday was one of those days -- this week has been one of those weeks -- when the post-chemo exhaustion catches up with me and knocks me square on my ass, when the steroids (or my hormones) make me weepy (highlight: my yoga instructor played "Stand by Me", my and Chris' wedding song, in class the other day, and I was sobbing in down dog), when it feels like a struggle to get out of bed, let alone play with Quinn or do laundry or pour myself a bowl of cereal. I must have an amazing ability to forget how wiped out each treatment makes me, because all of this never fails to surprise me. Chemo-nesia? Something like that.

Part of it -- a large part of it, actually, I think -- is that the steroids I'm given with my infusion keep me up well well well past my bedtime, my mind and body buzzing like I drank a quadruple venti mocha with dinner (the only time of the week I have any energy). I got four hours of sleep Monday night, which is not nearly enough. Then I spend the rest of the week trying to play catch up, and I am too old for this shit.

***

Did I mention our house is under construction? We're turning our one-car garage into a mother-in-law suite and building ourselves a two-car garage. Well, the construction guys are building it, and it's coming along at a pretty decent pace, from what I can tell. This week they're working on framing the roof.

Quinn loves it when the cement mixer or diggers show up on our front lawn, but after four weeks of activity the novelty of the construction itself has worn off. 

He'd rather watch Rescue Bots (which he calls "Rethcue Botsth to the Rethcue") on his iPad. Because I'm gunning for parent-of-the-year-award (they still give those out, right?) we spent all day Tuesday on the couch watching tv. I couldn't do it again yesterday, not with the incessant ham-ham-hammering going on above our heads, in my head.

***

A friend swooped in and saved my tired butt offered a play date at her house, and it was exactly what Quinn and I both needed. We may have overstayed our welcome (although I hope not). Quinn spent five hours running around their football-field-sized backyard, jumping with his friend on their trampoline, driving a "monster truck" until it ran out of batteries, until he ran out of batteries, too. Also? We've potty trained, so who needs pants when it's 75-degrees outside?

Somehow, parenting is a million times easier with two moms around. Math would insist it should be twice as easy, but no. A million. We visited lazily, the boys were happy, and Quinn came home as pooped as I was last night. It was glorious. And, finally, this week is coming to an end.

Thank you, Shannon. Next time I won't forget the wine.