Life is Amazing

I am in the throes of planning Quinn's FIFTH birthday party, by which I mean I'm browsing Pinterest to see if there's a chance in Hades I could pull off a Star Wars cake (or cupcakes), or if I'm better off ordering them from a professional. I can bake, but pastry decoration is a whole other level of domesticity that I do not possess. Also, do Quinn and his friends really need "Yoda Soda"? Or light sabers made of frosting-dipped pretzel sticks? Who am I kidding???

I'm also trying to make sure he's signed up for the right soccer camps but not too many because I don't want to overdo it. I'm still pretty sure we're over-doing it. And every preschool mom I know is debating kindergartens right now, figuring out where our children have been waitlisted or accepted, attending "meet-the-teachers events," waiting to be interviewed (yes, interviewed), determining which environment will be the best fit for our kiddos, and wondering WHEN THE HECK KINDERGARTEN GOT MORE COMPLICATED THAN CHOOSING A COLLEGE.

In the midst of this beautifully normal life, I've been scheduling doctor's visits -- scans next month, the follow-up with my oncologist, and another for me with my dermatologist last week for something on my elbow, the biopsy of which came back as "needing treatment," although not cancerous. It turns out it probably just needs some steroid cream, but I'll have a follow-up in 3-4 weeks to be sure. 

Because more doctors were what was missing from my life. 

❤️ #itsamazing #itsawful #itsbeautiful #quote

A photo posted by LAYLA GRAYCE (@laylagrayce) on Sep 22, 2015 at 6:29pm PDT

So I'm worrying (just a little) about my elbow, which I should have more info about at the end of this week, wondering whether our puppy is getting enough exercise, trying to teach Quinn about eating the RAINBOW, and occasionally it hits me how lucky I am to be able to worry about things that are not cancer. (Side note: the rainbow thing is legitimately working. He tried red bell peppers, purple sweet potatoes, cauliflower tots, and ants on a celery log and only balked at the red pepper.)

"I LOVE sweet potatoes!" even came out of my son's almost-5-year-old mouth. Parenting for the win.

***

Last week, I finished reading Room, about a 19-year-old woman who is abducted and locked in a room. (The film has been nominated for a few Academy Awards). The woman is repeatedly raped by her abductor, gets pregnant, and has a little boy, who is five years old as he narrates the story. This room and his mom (and the occasional visit from their captor) are all of the world he's ever known. It is a story about how they manage, and eventually how they escape. But more than that, it is about the love between a mom and her son and how that carries them through, how it saves them both.

This book hit my emotions like a ton of bricks, and I can't recommend it enough if you have a five-year-old (or nearly there) in your life. They're pretty special people, and I'm pretty sure their love could save the world. So maybe there will be homemade light sabers at Quinn's party after all.

Heading to the Windy City

As I said, I'm working on a few advocacy endeavors, trying to figure out what I'll do with all my free time once this puppy is potty trained and Quinn is in kindergarten next year. KINDERGARTEN! I swear he was just learning to walk last week. Now look at him go (in the dark green).

Quinn hits the slopes from Jennifer Campisano on Vimeo.

One of the things I've signed up for is an advisory role for a conference taking place in Chicago in April. It's on how to build better online communities for healthcare, how to amplify our voices as patients and find each other as we stumble around in the dark after a devastating diagnosis, waving our little candles of shared experiences at one another.

Can you relate? Have you got an online presence in the healthcare space? Are you living with a disease -- whether cancer, diabetes, mental illness, HIV/AIDS, you name it? If so, I encourage you to apply to attend.

If selected, each participant's airfare, provided meals and hotel costs will be covered by Janssen and you will receive a formal agreement for your review and signature indicating that you agree to these terms. Janssen is accepting applications through February 22, 2016.

"The mission of HealtheVoices is to provide educational tools, resources and inspiration to help you better serve, expand and grow your online communities. We believe our 2015 conference was a great success because of the close connections that were formed across multiple health conditions, and we want to encourage you to consider being part of the conference again this year.

This year’s conference will feature nationally recognized keynote speakers focused on the power of online patient communities. New sessions will highlight the value of video blogging, how to maintain consistent fresh content for your communities, growing your impact as a patient advocate, while returning favorites will dive into new areas in analytics, how to handle compassion fatigue and more!

Janssen will once again be covering costs for travel and hotel accommodations."

You can see my post on last year's conference here, help the folks at Janssen's partner Everyday Health out by taking a survey about why you read my blog (and others) here, and look at some of last year's highlights and SUBMIT YOUR APPLICATION TO ATTEND THIS YEAR'S CONFERENCE HERE. I hope to see you there! And if I miss you in April, I'll be returning to Chicago in June, but that's a post for another day.

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 Can't Thank You Enough

So it appears I really DID run out of words for a bit.

I've calmed down a little, but then I have moments -- frequent, frequent moments -- where I am not okay all over again. My grief and fear come out in irritability, anxiety, and more goddammits than I'd like to admit. I find myself out of patience more often than not, short with Chris (or worse, Quinn) more than I'd like, and then hard on myself for how shitty these episodes make me feel.

This weekend, Chris was out of town and our new puppy peed on the kitchen floor approximately 45 paper towels' worth of times and Quinn might be going through a growth spurt because he wants to eat all of the things all of the time. And -- oh, man -- his whininess. And my grouchiness. And and and.

Our cat is on Prozac, and this weekend, I thought of borrowing a couple of his pills for myself. (I'm joking. Kind of.)

Last night, Quinn needed help brushing his teeth, and called for me. I was moving the dog's crate into my bedroom and didn't respond immediately. My hands were full. Quinn got cranky and snapped at me a couple of seconds later, a full-on yell with a little bit of desperation in his voice: "MOM, I SAID I NEEDED HELP!!" I was already on my way to his bathroom door, showed up a second later, and asked him to remember his patience. "I'm doing the best I can, buddy."

But am I really? I yelled approximately eighteen times yesterday, exhausted and at the end of my rope and just over it.

Quinn is my mirror. These are my faults reflected back at me. Sometimes I really don't like what I see.

My resolution for 2016? Work on my patience. Breathe more. Be mindful in my relationships at home. See less of "mean mommy," who is angry and scared and prone to swearing in front of her 4-year-old, sometimes about dog pee, which is really not his fault in the slightest.

***

On the drive to my oncologist's office this morning, I listened to Diane Rehm interview Carly Simon about her memoir Boys in the Trees. Simon was talking about a song she co-wrote with her son after an argument between them in which he'd said something quite hurtful. He'd immediately followed her upstairs to apologize. She was crying, and sat down with her guitar to come up with the first verse of "I Can't Thank You Enough." When she sang it to him, he asked if he could help write the rest of it.

So of course I was a blubbering idiot driving to my doctor's office (where I'm now sitting getting my thrice-weekly infusion of Kadcyla). But this came exactly when I needed it, and might be the song I request to dance with Quinn at his wedding. In the meantime, I'll listen to it when I need a reminder to be more careful with my words...or a good cry.

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.