The Upside of Down

Sometimes the world feels upside down. It can be scary, but a friend once told me scary isn't always bad. There is fear in letting go, in going beyond the edge of what our minds tell us is safe, in exposing our deepest vulnerabilities, our soft bellies.

Photo by Quinn. My holding a handstand, like me, is a work in progress.

My world has certainly felt upended -- over the last few years since my diagnosis changed, yes, but also very acutely over the past few months. Is it the alignment of the planets? A midlife unraveling a la Brené Brown?

'Many scholars have proposed that the struggle at midlife is about the fear that comes with our first true glimpse of mortality. Again, wishful thinking. Midlife is not about the fear of death. Midlife is death. Tearing down the walls that we spent our entire life building is death. Like it or not, at some point during midlife, you’re going down, and after that there are only two choices: staying down or enduring rebirth.' -- Brené Brown

I suspect the latter is closer to the truth. Having already faced my mortality head-on, the remains of my walls feel as if they're crumbling, and the question staring me in the face is what is it that you're going to DO with your second chance? How are you going to SERVE? As I begin to re-engage with the advocacy community, I have felt a yearning for something...more. A greater impact and deeper meaning to the work I do, which, let's face it, most days just involves laundry, meal-planning, and entertaining a nap-resistant toddler. There is purpose in that, don't get me wrong. But I am exploring options for shifting the balance outward a smidge.

Balance doesn't always come easily. Case in point -->

I can dissect all I'm doing wrong here as far as form goes, but at least I'm laughing.

I have also been intensely focused on the mental health side of my cancer recovery these past few months. And HOLY SMOKES, you guys. I mentioned that I was exploring EMDR, a type of trauma therapy, and I promised to write about it...four months ago.

The sessions have been nothing short of intense. This work is not for sissies. Each hourlong appointment passes in what feels like just a few minutes. Every single time I am jolted back down to earth when my therapist tells me it's time to wrap up. I keep feeling like we're just getting started. Then I have weird dreams and cry at random for a few days, and I call my closest friends and ask why adulting is so damn hard sometimes. DM me if you know the answer to that.

In our first session, she asked me about my trauma, and I talked about cancer. I mentioned in passing how the sound of our bathroom exhaust fan makes my chest feel constricted and my heart race, and THAT is the snippet she wanted to focus on. I still don't know where that angst comes from, but my therapist asked me when else in my life I have felt that way. And some things came up. BOY, DID THEY COME UP. We are working through anxieties that have nothing to do with cancer yet. The unraveling is happening.

In an effort to augment my therapy appointments, and in light of Quinn's existential concerns of late, I've been meditating regularly, hiking a couple of times a week, and trying to make it to yoga on Sundays. My kids have started their own at-home practice.

This weekend, the yoga instructor, Beau, started off the class as he usually does, by imparting some wisdom, some food for thought. He said he wanted to talk to us about sharing. How he gets to know his students pretty well, that we share things with him. He said he had been teaching a class earlier in the week and two of his students were in the front row, next to each other. And he knew they were both facing some pretty tough things in their lives, and the kicker is they were both going through the same hardship but neither one knew it because we don't always open up to the people around us. Then Beau talked about a video circulating in the CrossFit community about one of their own coming out as gay, how the response to the video shows humanity and love at its greatest and most accepting, and how sharing can lead to that. I've seen that here, in this space, how a community can lift a person up when they feel at their most terrified and exposed.

Beau ended his little talk by asking us to share, if not our fears and vulnerabilities, to at least share our gratitude.  I haven't talked about my mental health much here because so much of my recovery is still in process -- but then I'm realizing it may always be, so I should get to discussing it sooner rather than later. I should share, trusting in this community, and that the ground won't be as far away as I think. If I fall, I will stand up again. You guys will help me.

Anxious as a Mother

The other night, Quinn came home from a monthly dinner with his preschool friends and their families, visibly upset, tears pooling in his enormous blue eyes. I pulled him in for a hug and asked what was wrong.

I’d left dinner early to get Noelle to bed, and wondered if I’d missed an incident. As soon as his head was against my chest – when did he get so tall? – his body shook in sobs.

“Oh, buddy, what is it?” I asked. 

“I just don’t want people to keep dying,” he said. 

I racked my brain. Who had died? Had we talked about death recently? We’d just returned from a nine-day trip to Seattle to visit my best friend and her family. Her daughter, my 14-year-old god-daughter, was diagnosed with melanoma in May. That is a whole other post because FOURTEEN ARE YOU KIDDING ME, but two surgeries later and doctors have declared her cancer-free. So we’d talked a little about cancer -- it seems we always talk a little about cancer -- but not about death.

My big-hearted boy

“What brought this up?” I asked Quinn. 

“I’ve been thinking about it since that magazine I read in Seattle,” he said.

What magazine? I wondered. I still don’t know. 

He could see I still looked puzzled. “It was a medical one about people donating their organs, and I just wish people didn’t have to die. I want them to drink from the cup in Indiana Jones.” 

“Remind me what happened in Indiana Jones?” I said. I’d been chatting with Alana on her deck for half the movie, watching the late summer sunset while he’d watched the movie with his cousins. 

Movie night

“There are several cups, and lots of them are deadly poison, but one is a potion that lets you live forever," he explained, his eyes lighting up. "Why can’t we find that and give it to everyone we know, and the people we don’t know, too, so no one else has to die?”

“I don’t know, bud,” I said. “We haven’t figured out how to do that, yet. But hopefully it’s not something we need to worry about for a long, long time," I tried to put an optimistic spin on it, even as I wondered whether I caused this. Is it because he sees me upset about losing friends to cancer? Is it because I had cancer, and his grandpa died of cancer before he was born? Is it because I have other anxieties and fears I'm working through as we speak? Is it just a normal age-appropriate fear that has nothing to do with me? 

And then he surprised me. “I wish I could talk to God about it,” he said.

We are not a particularly religious family. To put it lightly. Chris and I were both raised Catholic, but have stepped away from the church – and any organized religion, really – at different points in our lives. My leaving came more recently, a disillusionment after my cancer diagnosis that I haven't quite figured out how to reconcile.

I don't think I got better because I prayed harder, but I still value the power of prayer. I also respect that millions of people find solace in their churches and church communities. If my son needed this, I would support him.

In parenting, I sometimes have to observe silently and allow my kids to discover their own particular beliefs about how the world works. My job is to support them in a safe, loving, accepting environment as they make sense of this universe in their developing brains. 

So I responded, “Well, you can talk to God, if you want."

"I can?" he asked, like I'd just shown him how to time travel.

"Of course," I answered. "He may not answer back, but we can talk to him. Would that help, do you think? Should we pray?”

“Mmmhmmm,” he answered, and suddenly he seemed so much younger to me than the big kid who just started third grade. 

Of course he needs something external to give him hope and promise that all his worries might be okay, I thought. I don't always have those skills as an adult, and I go to intense therapy every other week. 

I tried to remember how to pray. 

Now I lay me down to sleep. No, too morbid. I asked Chris if he could remember the non-terrifying version of that one. “Nope, that’s all I knew,” he said. 

Ok, The Lord’s Prayer, then. “I used to start with something like this,” I said to Quinn, “something I knew by heart and could repeat every night.” And we went through it, line by line, a matter of rote memorization to me, unfamiliar to him. We finished and he asked a lot of questions about forgiving trespasses and the meaning of temptation.

Am I doing my kids a great disservice by not taking them to church? Why is being an adult so tough?

On Father’s Day, I’d taken both kids to a Mormon Church service. Chris was in Tanzania, and Quinn had requested to go to church where a couple of his friends go. Arrangements were made, we dressed up in our Sunday finest, and listened to the service about a father’s love for his family. Quinn’s friend’s dad gave the sermon, and teared up as he spoke about his dad always being ready to play ball with him, even when he was still in his work clothes and it was still 100 degrees outside. He’d roll up his sleeves and they’d head to the backyard. Such a simple act of love. I thought of all the ways dads show their love, of my own dad, and I wondered if Quinn was absorbing this or just happy to be sitting with his friends eating peanut M&Ms. 

Back to our praying. I recommended that he start with something easy to remember, and then go through what he’s grateful for. “It can be really helpful to think of all the things you’re thankful for. It always makes me feel better,” I explained.

“Everything,” he started. Oh, this boy. My heart. His enormous one. “I’m grateful for my family and friends, for Noelle, for food, our house, clothes, school…”

“For your powerful brain that lets you learn,” I added. “I’m thankful for you,” I said. “And my health.” I was holding him, lying next to him on his bed, our heads resting on stuffed animals.

“I’m thankful for our cars, for our pets…” 

“Yep,” I said. “And then from there, you may want to ask God about what it is that’s bothering you, or what it is you want. When I was little, I would ask God to protect my family, keep soldiers safe and bring them home, make sure children around the world have food, that kind of thing.”

“But what about why we came in here?” he asked. “I want to ask God to stop people from dying.”

Oy.

Our conversations about this have continued for several days now. We've talked about how to cope with our fears, even when we know they won't go away completely. How to use deep breaths and meditation to make the tightness in our chests feel less constricting. We've talked about how I go to therapy, and why that helps.

About how I try to give back to my community in the cancer world to honor those who have died. How Chris aims to be a good dad to keep the memory of his parents alive.

We've talked about how everyone dies, so that what's important is making this life count, and remembering that we are here today.

I've promised him that it is always worth it to love so big, even if it means occasionally losing big, too. To not let his fear shut down his willingness to open his heart.

We've talked about the importance of movement and laughter and, yes, prayer. We've journaled together, written a short story about overcoming fears and finding courage, and have tried dance parties in our kitchen.

But he is just like me in this way. We feel deeply. His empathy knows no limits, as far as I can tell. I only hope we can work through his anxiety a little earlier in life than I started figuring out how to approach mine.

Oof, parenting is exhausting and all-consuming sometimes. (All the time.) AND I HAVEN'T EVEN MENTIONED THE TODDLER.

I'm Just Here for the Endorsements

What a warm welcome back to this space! Thank you guys for being here while I dust things off and clear out the cobwebs and find my voice again. Why did I go silent for so long? Didn't the metastatic breast cancer community still need advocates?

Am I just back because I want your attention (not to mention the bazillions of dollars in endorsements)?

All joking aside, I do want your attention. God knows cancer still needs advocates, especially in the metastatic community. But I also want to shed light on what it's like to survive what I thought was metastatic cancer -- even the ugly parts. Especially the ugly parts, so maybe they can be less ugly for those who come after me. (Because I would fucking love it if all my mets friends suddenly found out they didn't actually have tumors breaking their ribs, filling their lungs, invading their brains, that instead they, too, had an autoimmune disorder.)

I want to talk about the dark parts of facing a major identity change, even if that change is ultimately a positive one. Yay, no cancer! Go on your merry way, we've got other patients to treat! They include your friends, who will continue to die. You should be so HAPPY! I digress, but maybe in talking about it, the darkness can be less jarring and raw going forward.

For so long, I wasn't ready for that amount of processing here, even if I've alluded to some struggles. I wanted to wait until I'd been in therapy long enough not to just dump everything out here without a filter. You guys deserve a little bit of a filter.

Scan-day, December 2018

Also, I haven't exactly known what to say. Should I write that this past year has run me ragged and bowled me over with a strange mix of joy and sorrow all at once? Babies are amazing, exhausting little creatures. Then, seemingly overnight, they turn into toddlers who are bonkers and feisty, and ours also has the gift of fearlessness. She runs and climbs and tackles our cat or practices for the World Rugby Championships twelve hours a day until I think I might pass out from the effort of keeping up with her. In the middle of it she naps, and I am addicted to the sweaty curls at the back of her head when she wakes up. Wash, rinse, repeat.

Should I mention that more than once, I've broken down in sobs while rocking Noelle to sleep because I am immediately transported back to the fear I felt when Quinn was her age? That my brain frequently tells me I may only have a few days/weeks/months left with my children, probably because I spent 5 years thinking my time was severely limited? Is that normal? Are the nightmares?



And I'll pause to reflect on what I know is true: I am very lucky. Not only were my mets not actually tumor cells, but then my body grew something surprising and miraculous and beautiful, even after the assault of chemotherapy on my reproductive system. While I hope that part of my story -- my motherhood story -- offers a bit of hope and resilience about what our bodies are capable of, I know it will also be a painful reminder of what can't be for many of you. And I don't want you coming here to feel triggered. Nobody needs that, and I get it if you can't stick around.

My therapist believes I have PTSD, which I thought was only for soldiers who'd been in war. I don't even like the battle metaphors associated with cancer, but apparently the mental health outcome can be similar. I am working on new therapies to help, and mindfulness practices to lessen the severity and frequency of panic attacks. I am exercising daily, but like a good friend said recently, I can't spend all my time in the gym. I may need other tools. I'm not ruling out medication. I met with a new therapist who is recommending something called EMDR, and I'll write more about that soon.

Should I tell you that I've had to step away from social media upon realizing some people in my circle are no longer closeted bigots, and so I have occasionally missed the news that a friend has gone into hospice, or worse? Not to mention the woman I thought was a friend who seemingly faked having metastatic cancer and has rocked this community? That I still feel intensely and excruciatingly guilty that I appear to have survived am surviving cancer?

Do you want to know that I joined a board to lend my patient voice to improving diagnostic accuracy because medical mistakes kill as many people as breast cancer each year, and my story has a rare, healthier-than-I-started ending?

All of the above?

I do feel like I owe it to myself and my twelve loyal readers (hi, mom!) to write about the emotional fallout of learning of my misdiagnosis, becoming unexpectedly pregnant, and then parenting from a completely different perspective, albeit with somehow just as much anxiety.

It isn't surprising that enormous changes in identity can wreak havoc on one's mental health.

I also feel like I owe it to the MBC community to continue to advocate on behalf of the women and men who are still dying at an alarming rate. At HealtheVoices a few weeks ago, a woman said we need to find our tribe, and all I could think was, "What if your tribe keeps dying?" I looked at the ceiling for awhile to help me blink back tears. I miss my friends.

So I'll be ramping up my advocacy work this summer, and I hope to share my story in more ways, across more platforms, as I heal from the trauma of my misdiagnosis and rediscover myself. I've missed you guys.

Go Home, Anxiety, You're Drunk

Noelle turned five months old yesterday. Quinn asked if we could celebrate with a party, but I can see right through that ploy for cake. So I said we'd do one next month, perhaps with Funfetti cake. I might even spring for balloons and invite some people because it will be the end of the school year here in Arizona, and maybe our legislature will have acted by then to PAY TEACHERS WHAT THEY'RE WORTH and possibly increase per student spending, too. That would be cause for celebration. What? You don't celebrate your babies' 1/2 year birthdays when they coincide with hypothetical legislative victories?

In the meantime, our teachers have voted to strike if the legislature hasn't acted by next Thursday, which I support 100%. I am surprised it took them this long, considering as a state we are $1 BILLION short of education funding compared to a DECADE AGO. Meaning there has not been an increase in education spending here in my son's LIFETIME. There are reports of rats in some classrooms, buildings are falling apart, and our teachers are grossly underpaid. 

So I fully support our educators walking out until our governor signs adequate funding into law, but I will also be at a conference in Chicago starting next Thursday and unable to help with taking care of our children for a few days. SORRY CHRIS'S BOSS.

More on the conference soon, but this post is supposed to be about Noelle. 

For the grandparents and great-aunts and uncles reading: at five months, Noelle is still weighing in at the tenth percentile, the little peanut. We adore her, and at least once a week, I get teary-eyed at how lucky we are to have her, at how unlikely and miraculous it is that she's in our lives. Baby girl spends her days giggling at funny sounds, drooling until her shirts are soaked, watching her older brother like a hawk, almost sleeping through the night, and has rolling onto her side down to a science. She'll figure out rolling all the way over one of these days. I'm not worried. 

Not about her development, anyway. 

On the other hand, I have been an anxious wreck the past couple of weeks leading up to this time period. At first, I couldn't figure out why. Some people talk about how the changing light around the equinox can exacerbate feelings of darkness or cause a certain tightness in your chest, but we are well past that point in the season. What I've been feeling is more than unease. It's more of a crippling foreboding that something terrible must be about to happen. That somehow, despite our five-year journey shit-show with cancer, we still got off too easy. 

That perhaps we don't deserve these incredible moments with our little girl. YES, I KNOW THIS SOUNDS CRAZY. It also makes it really hard to parent happily and with enthusiasm right now. So what's going on with me?

The last time I had a five-month-old infant, I was diagnosed with cancer. 

Photo of Quinn at almost-5-months-old next to Noelle at the same age, in the same seat. My hand looks like a claw.

The simple typing of that sentence has me erupting in sobs, so clearly I have some processing left to do. So much for this post being about Noelle. Related: I am actively accepting recommendations for therapists who take our insurance. They are surprisingly difficult to find. 

I worry about nearly everything lately, with abandon: violence at public schools, which admittedly is a very real fear shared by many, many parents these days; Quinn choking on an apple while I'm in the other room (hasn't happened, but could); whether my occasional night sweats are normal postpartum or a sign of lymphoma; if the dog has thrombosis (was just a scratch, says the vet, so I can cross this one off my list for now); and all kinds of other scenarios that alert me that my anxiety is on a bender right now. Chris tells me worry is rarely ever productive, which, sure, makes sense if you can consider these things logically. 

Is this just some twisted version of survivor's guilt? A fear that history is bound to repeat itself? PTSD? I mean, I can diagnose myself all day long, but sometime soon I've got to stop fearing the past and worrying about the future, right? And contain my worry to very real things like under-funded schools and how to dress for a conference in Chicago this time of year. I mean, plenty of people have five-month-olds without the sky falling, or so I hear. Right?

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.

Getting Our Affairs in Order

Shame on us, really, because we should have done this years ago. Along with finishing Quinn's baby book and organizing our family photos. See, also: throwing away leftover Halloween candy, drinking more water, and stepping up my cardio game.

But with the death of both of Chris's parents in the last few years (his mom just this summer), not to mention my string of luck health-wise in 2011, 2012, and 2013, it became more and more clear we needed to have our affairs in order. It sounds so final, to "get your affairs in order," but really, it's just the smart thing to do. I'm not planning on dying anytime soon, but you never know. That proverbial bus seems to be all over the place these days.

Also, I'm a lawyer. I know it's important to have an estate plan, if only to keep the courts out of things at the end of your life. Lord knows I don't want some Arizona probate court deciding what becomes of this guy, god forbid and fingers crossed and knock on wood. 

So we met with an attorney, who will draft a plan for us and set things up so that Quinn will be okay even if Chris and I both get hit by a bus. 

I held myself together through the meeting, despite having to talk about what happens if Chris (or I) remarries, who makes decisions if one of us is on life-support, who would get custody of Quinn, and whether you can legally enforce requests for certain included elements at a memorial service, such as the singing of "Ave Maria." (I think this last one was Chris's attempt to lighten the mood. I was trying not to choke on the knot growing at the back of my throat.) 

I know in lots of ways these are first-world problems. We have a house, we are educated and have a college fund for our son, and we have family to care for him should something happen to both of us, which is admittedly unlikely. But something about incurable cancer and making very concrete plans for the end of your life and having scans in two weeks came together to have me ugly crying in my husband's arms this weekend, asking him who would remember snack days at school for Quinn, or register him for soccer and swimming (and make sure he gets to both), or put notes in his lunch telling him how much he is loved? And would he remember that I'd done any of these things for him? Would he remember me? 

Oh, yes, I went there. 

My death is not imminent, I don't think. I am getting to be Quinn's mom, which has made me the luckiest person on the planet these last four-and-a-half years. Mostly, things are pretty good here. Other than cancer, I can't complain! Which is along the lines of the question, "Otherwise, Mrs. Lincoln, how was the play?"

But, oh, can mortality be a terrifying thing. 

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.

This is How We Cope

A friend of mine posted something the other day, along the lines of: "Brain MRI day. There better be brains still in there."

It got me thinking about how we -- those of us who've been diagnosed with metastatic breast cancer -- deal with the barrage of treatments, scans, and uncertainty that make up our day-to-day lives. A lot of us resort to humor.

Another friend posted a photo of her SKULL CAP, which had been removed from her head as part of her treatment for metastatic breast cancer that had spread to her brain. In the photo, screws were still attached to the flesh. My friend joked (of course) about having a screw loose.

I thought her post was hilarious, but I also wanted to cry at the absurdity and unfairness of it. In what other world or scenario would I find a photo of a friend's surgically-removed scalp remotely funny? None that I can think of.

My friends and I make jokes about whether we still have brains because we are in fact SCARED OUT OF OUR MINDS.

Metastatic breast cancer is terrifying. 

So we try to find the humor -- or find other ways to cope.

Sometimes, I feel embarrassed about how emotional I get, so I try to pass it off as being the fault of astrological phenomena. My scientist husband loves when I do this. (Note the heavy sarcasm.) A few weeks ago, for example, I tweeted that I was feeling extra emotional about cancer, and suggested that maybe I could blame the full moon. 

Feeling extra emotional about/scared of #MBC reality when I hug my 4yo lately. Can I blame the full moon? #lifer #bcsm

— Jennifer Campisano (@JCampisano) September 27, 2015

A friend who also has a 4yo son responded that she blames her brain mets. She was like: I see your bullshit, and I'mma cut right through it. As far as I know, I don't have brain mets, but I still reeled at the truth of her statement. Some days, there is no way around it. This shit is real.

Because as much as we might try to make light of our various situations, metastatic cancer is actually a heavy load. It is a LOT to process. As I said to another friend I was emailing with this week: you can't expect to remain sane all of the time. 

Why I Won't Be Toasting My Clean Scan This Time Around

I don't even know where to begin, except we have received exceptionally great news this month (my scan was clean, marking twenty months of no evidence of disease), but the occasion was bittersweet, because on July 10th Chris's mom passed away due to complications from advanced Parkinson's Disease. Damn that disease. And this one, too (cancer is not off the hook, no), but mostly that one right now.

Maryann was a beautiful woman, and bitingly funny even toward the end.

The last time I saw her, just before Father's Day, I asked her how she was feeling. She said, "You want the vacation answer or the real one?"

"The real one," I said.

"Like shit," she responded. Those of you who knew her will chuckle a bit at this. She still had so much fight and spunk and spirit, even as her body was failing her. I won't go into details, but the enormity of her spirit was evident in her last few weeks, as she held on for longer than hospice said was possible. In the end, she passed away at home with both her boys and her two favorite nurses there with her.

I loved her deeply, and worried so much about her these last couple of years as her symptoms progressed and her condition seemed to worsen. I tried to cajole her into eating green muffins (made with spinach) along with Quinn, but she couldn't get past the color. Nutrition was easily her least favorite topic as her appetite declined. But she'd smile widely when I would give in and take her to the Dairy Queen drive-thru for "lunch": always a peanut buster parfait. At least there were calories, I reasoned.

I always tried to reassure Maryann (and myself) that the two of us would get through our illnesses together to watch Quinn grow up. "You and me, lady," I used to tell her.

God, how I want to watch Quinn grow up.

***

Quinn told me earlier this week he's going to be an astronaut and fly to the moon, then asked me what I'm going to be when I grow up, when I'm a grandma.

"I don't know. What do you think I should be?" I asked.

"A nurse!" he proclaimed. "To help people."

I just want to be a grandma, but I don't tell him that.

***

Last year, we turned our one-car garage into a mother-in-law suite in the hopes that Maryann would start spending the cooler months here with us (where it is decidedly not cool.) Together with Chris's Aunt Kathie, Maryann and I picked out furniture, decided on bathroom tiles, and went rug shopping together. We bought a painting of a pig to decorate the sitting area.

This week Quinn announced matter-of-factly that Grandma's room is now the "overnight room for when we have other guests."

"I guess you're right, buddy." I tried not to let my voice crack.

It will be awhile before I get around to clearing her toiletries out of the medicine cabinet or taking her robe down from the hook behind the bathroom door.

***

As a family, we are navigating the end-of-life closure, eventually the going-through-and-then-selling the house she'd lived in for 35 years, a memorial service, and down the road, the spreading of her ashes with Chris's dad's (who died of pancreatic cancer six years ago) over the Pacific ocean.

I am trying again to be there for my husband through unthinkable grief. I feel like I have no idea what I'm doing.

***

I am trying to not worry too much when my oncologist tells me: "Your scan was clean, so no cancer, which is great, but..."

... But what?

"Your liver enzymes are a little elevated. We need to take some more blood. Are you on any new medications? Antibiotics?"

No and no.

WTF.

"We had more wine than usual over the weekend?" Chris offers.

"That could be it," my doctor says.

So this happened (extra blood work) because even though my CT was clear, my liver enzymes are mysteriously elevated. Dammit. #scantreatrepeat #stage4needsmore

A photo posted by Jen Campisano (@jencampisano) on Jul 22, 2015 at 4:33pm PDT

I blush and feel like a kid caught sneaking cookies from the cookie jar because in the last four years, I hardly ever drink more than a glass or two of wine, but last week I drank more than I should have while visiting my brother because I wanted to be normal again. I wanted to forget everything we have going on for a minute. I wanted to enjoy a glorious summer night in the northwest, breathing mountain air and curled up under a blanket while visiting with some of my favorite people and not worry about saying no when my glass got refilled more than once.

My older brother and I celebrating another clean scan in January 2013.

I'm trying not to worry too much. My oncologist doesn't seem concerned and he is one of the most cautious physicians I've ever known.

But when you google "elevated liver enzymes" and one of the first results is "metastatic cancer," it's hard not to freak out. Especially given my history. So now I wait, and will try to quell my nerves with yoga and deep breaths and probably a Xanax at night. The plan is to retest next week and see where things stand.

***

I also have, I think, a tendency to panic when I should be grieving. My brain gets emotionally confused -- or something -- and with Maryann's passing I can't help but feel vulnerable myself. I feel it every time a friend goes into hospice. As another blogger and friend put it, "Every time one of my online friends dies and I'm still here, I go through this combination of guilt that I'm here and fear that I'm next."

Is this an actual documented phenomenon? If anyone with a psych degree can explain my extra worries to me, I will pay you (in wine if you want. It looks like we won't be needing so much of ours).

***

I'll keep you guys posted on my liver enzymes. And if I'm posting a little less here lately, this is why, in a nutshell: we have entirely too much shit going on. Please bear with me for a little bit.

In the meantime, there will definitely not be any champagne toasts to celebrate my clean scan this time around. It looks like a peanut buster parfait is in order instead.

Around the Web: Like Clockwork

I've been chewing my nails something fierce lately, and I haven't been able to put my finger on why (no pun intended). Then it hit me when the scheduler from my oncologist's office called this morning: I am due for my three-month scans.

Except this time I'm not having three-month scans. I got bumped to every four months, which apparently in my world is just going to mean an extra month of anxiety. My body is that well-adapted to this cycle. My brain knows just when to start acting on-edge, when nightly Xanax pills might be in order once again. After all, I've been doing this for almost four years now.

{photo credit}

It's like clockwork over here.

Except it isn't.

So now I'm all thrown off schedule, my right thumbnail is bitten to the quick, and I do have scans on the books five weeks from now. So I better figure out how to get this anxiety under control because I can't take five weeks on high alert. I will literally run out of nails.

I also made the mistake of mentioning this article from last week's round-up to my doctor by way of his assistant, and so my doctor promptly ordered a bone density scan for me. I've never had one, so this will provide a baseline. It is also, predictably, adding to my anxiety. I don't know if it's cancer, or parenthood, or just being in my mid-thirties, but my mind worries about every possible thing that could go wrong, and not just when it comes to scans (from our toaster catching fire, to getting car-jacked at a stoplight because of course, to sinkholes even though we live in Arizona not Florida. The list goes on.)

Anyhow, here's what I saw around the web this week (but I'm not asking my doctor about any of them, lest he order any more tests for me).

At Long Last, Answering Some Questions about 'Exceptional Responders'

"Silva is what researchers call an “exceptional responder,” the rare patient who has a surprising, dramatic response to a drug. . .

Silva’s story, and those of other exceptional responders, have led to an intriguing set of questions: Could researchers use technologies such as genetic sequencing to figure out what made Silva’s tumor respond to treatment? Could they mine that data for clues that might help other patients? Could they ultimately find a way to make the exceptional more routine?"

Actually, I'd happily submit to more tests if it was to figure out why I've been so lucky, why I've responded to drugs the way I have, and maybe lead to answers that could pass some of that luck on to someone else. 

Last Week it Was the Bones, This Week the Lungs?

"Scientists at the University of Edinburgh said they have discovered a “trigger” that allows breast cancer cells to spread to the lungs. . .

Prof Jeffrey Pollard, the centre’s director, said: “Our findings open the door to the development of treatments that target the tumour microenvironment, which may stop the deadly progression of breast cancer in its tracks.”"

Will the Breast Cancer Test Kit be Next to the Pregnancy Tests at the Drugstore?

"Researchers at the Department of Obstetrics and Gynecology of the Medical Center -- University of Freiburg have developed an approach for detecting breast cancer by means of urine samples. The method involves determining the concentration of molecules that regulate cell metabolism and that are often dysregulated in cancer cells. These molecules, referred to as microRNAs, enter into the urine over the blood. By determining the composition of microRNAs in the urine, the scientists succeeded in establishing with 91 percent accuracy whether a test subject was healthy or diseased."

A Case of Two Steps Forward, One Step Back (Or Sideways...)

"Countering previously held beliefs, researchers at The University of Texas MD Anderson Cancer Center have discovered that inhibiting the immune receptor protein TLR4 may not be a wise treatment strategy in all cancers. This is because TLR4 can either promote or inhibit breast cancer cell growth depending on mutations in a gene called TP53. . .

"This looks like a promising avenue to develop drugs for the worst kinds of cancers," says Brown. "However, if we wish to target this immune pathway, we better pay attention to the TP53 status of the tumor.""

Finding Relief from Post-Mastectomy Pain

Mine is not so much pain as it is a significant tightness throughout my right pectoral muscle and armpit region (to use the anatomically correct term, I'm sure) that no amount of stretching seems to alleviate (although yoga helps tremendously). Chris, if you're reading, I think monthly spa massages would help, too.

My goal {photo credit}

"“Pain is a psychological trigger for worry about cancer recurrence,” said Julie Silver, an associate professor at Harvard Medical School who specializes in cancer rehabilitation. “Treating PMPS really helps to relieve that anxiety.”

PMPS is generally defined as nerve-related pain that persists for at least three months after breast cancer surgery, though it can take up to six months to develop. It tends to occur in the upper chest or the underside of the arm, causing pain that women often describe as burning or shooting, and it sometimes presents, as it did in my sister, as an unbearable itch."

I Might Have to Ask My Doctor About A Daily Aspirin Regimen

He can't order any tests based on a question about aspirin, can he? 

"A daily dose of aspirin may be effective at blocking breast tumour growth, Indian-origin researchers have claimed.

Dr Sushanta Banerjee, research director of the Cancer Research Unit at the Kansas City Veterans Affairs Medical Center, and his team found that aspirin may be able to ensure that conditions around cancer stem cells are not conducive for reproduction."

And How Law School May Have Led to My Cancer Diagnosis*

"“People really should elevate the importance of sleep to the same level they do diet and exercise to improve their overall health and well-being,” he said."

On that note, I'm going to bed. 

* Allegedly.

Around the Web

I woke up Monday morning to the smell of rotten eggs wafting from a rarely-used shower in the bathroom off our kitchen. Through the frosted glass door, I could see a shadowy mass taking over the shower's floor. I hesitated for a minute before opening the door. To sludge? Sewage? It was black and not quite liquid so much as liquid filled with sediment. I quickly closed the door and tried to make my coffee without gagging.

Is Mercury still in retrograde?

Because our stove's gas leak is also back, even though we thought it had been repaired in November. So I'm relearning how to use a slow cooker while I (again) wait for the appliance company to (again) find a part for our thirty-something-year-old beast of an oven.

Clearly, I'm supposed to stay out of the kitchen this week.

(But if you have any winning crockpot recipes, please pass them along!)

The fourth plumber I called was able to come out to the house that day instead of asking me to wait until Thursday. I had just enough time to drop Quinn off at school, drive over to my oncologist's office for blood work, and get back home to meet the guy who'd climb on my roof to snake our shower, which I still don't fully understand. At least my house no longer smells like burning sulfur.

None of which has anything to do with this week's round-up. Except to maybe say that it pays to be persistent.

Case in Point: Slamon's Tenacity Advances the Field of Breast Cancer Research

"Slamon, now director of Clinical/Translational Research at the Jonsson Comprehensive Cancer Center at the University of California, Los Angeles (UCLA), conducted the laboratory work and testing that resulted in trastuzumab (Herceptin), the first molecularly targeted therapy for breast cancer. 

His is a particularly intriguing story because the scientist had to fight for 12 years to get trastuzumab from development through approval, keeping the project alive despite a nearly crippling early lack of funding."

A Poignant Call for Action on Metastatic Breast Cancer

Watch the video, too, if you can. 

And this article is helpful for background.

"We don’t really collect meaningful statistics on metastatic breast cancer recurrences. US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between—i.e., people currently living with metastatic breast cancer.

Remember, about 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

NCI and SEER database record incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence — which is how the majority of people are thrust into the metastatic breast cancer ranks."

An Interesting Way to Treat Mortality-Induced Anxiety

A long but very worthy read about an experimental therapy. What do you think? Would you try it?

"Every guided psychedelic journey is different, but a few themes seem to recur. Several of the cancer patients I interviewed at N.Y.U. and Hopkins described an experience of either giving birth or being born. Many also described an encounter with their cancer that had the effect of diminishing its power over them. Dinah Bazer, a shy woman in her sixties who had been given a diagnosis of ovarian cancer in 2010, screamed at the black mass of fear she encountered while peering into her rib cage: “Fuck you, I won’t be eaten alive!” Since her session, she says, she has stopped worrying about a recurrence—one of the objectives of the trial."

Chemoprevention Is Not Very Popular

Maybe because risk for breast cancer is not very well understood? 

"Given that these drugs seem to offer some protection, why are they not in widespread use? Serious side effects is one reason. Beyond blood clots and uterine cancer, other known reactions to the drugs include strokes, cataracts, bone pain, hot flashes, nausea and vaginal dryness.

For some women, the risk of such side effects may be worth taking, depending on their particular odds of developing breast cancer. Those odds can be figured by using a commonly used calculator, often called the Gail model, that estimates a woman’s chances of having breast cancer in a five-year period and over a lifetime.

But this is where it gets more complicated. While many experts agree that women at high risk should consider the medications, they do not agree on what Gail score should trigger that consideration."

One Drug's Success Story

"Nobody ever died of cancer cells," says Dr. Larry Norton at the Memorial Sloan Kettering Cancer Center. "You die of tumors."

"I've been doing oncology long enough that I've seen cancers go from incurable to curable at the right moment in history," he says. "It could happen to breast cancer in years; it could happen to breast cancer in days to weeks. We don't know when it's going to happen."

Another Doctor's Visit and a PSA

Sadly, being diagnosed with one type of cancer does not make you immune to other cancers. Radiation treatment can lead to an increased chance of thyroid and skin cancers. Certain genetic mutations mean that some women are prone to getting both breast and ovarian cancers (see: Angelina Jolie). Because my dad was diagnosed with melanoma in 2012, I am at an increased risk of skin cancer, too.

It didn't help that I lived in Hawaii from 1982-85 (although it is still my happy place, sunshine be damned), sandwiched by stints in southeastern Alabama (more sunshine). Later, in high school, I lived in Florida and spent almost every weekend at the beach or the pool. And then a bunch of us in college used to get set for spring break with weekly visits to a cheap tanning bed up the street from our university. For a base tan, we told ourselves.

Then we sat on a catamaran in Jamaica and got fried anyway because base tans don't protect against burns, it turns out. I mean, look at this godawful "tan" line of mine, circa 1998 in Jamaica. (I should have at least kept wearing the same swimsuit every day. Oh, the advice I would like to share with my younger self...)

Here's the thing: I don't remember ever wearing sunscreen until my twenties, although I must have. Right...? Mom?

These days, I'm religious about it, especially living in Arizona. And I am always hopeful that the damage hasn't already been done. Because wouldn't that be the pits? To survive stage four breast cancer only to be taken down by a wayward mole?

So when a spot on my nose started looking weird a couple of weeks ago, I made an appointment with a dermatologist. This spot was pink and looking pinker, and I strongly suspected basal cell carcinoma. Because that's where my mind goes after what I've been through. And even though basal cell carcinoma is a highly treatable form of skin cancer, it's still cancer. On my face.

Except it wasn't. It isn't. The spot on my nose is a sun spot (so damage, yes) combined with a broken capillary underneath that is making it appear pink. Nothing a little concealer can't hide, or -- if I'm feeling really vain -- have fixed by laser treatment down the road. I had a full body scan, too, and everything looks okay.

I was a nervous wreck undressing for that doctor, though. Because I couldn't help thinking about how horrible it was to hear, "You've got cancer," the first time. I was scared out of my wits about living through those three words again.

So here's my little public service announcement: wear sunscreen. Every day. Put it on your kids, too. Don't go to tanning beds, ever. Maybe cover up a bit if you're going to be on a catamaran in Jamaica and drinking too much rum punch. And -- as always -- even if you seem crazy to everyone around you, if something seems weird on your body, please please please get it checked out. Please.

You can now go back to your regularly-scheduled programming.

Around the Web

Quinn and I spent most of the day yesterday on the couch. He was recovering from a minor but necessary surgery that left us both exhausted and me frayed all around my edges. (Quinn on the other hand seemed totally fine, as long as I continued to supply him with jello.)

Recovering from (minor) surgery like a champ with some help from his "pets."

A photo posted by Jen Campisano (@jencampisano) on Jan 12, 2015 at 2:14pm PST

The anesthesiologist allowed me to carry Quinn back to the OR, where I held him while he protested (Quinn, not the anesthesiologist). Quinn was screaming and crying that he didn't want the mask they'd tried to tell him was a superhero mask, while the doctor held it gently above my child's face. I rubbed Quinn's sweaty hair off his forehead and told him how brave he was. Somehow, I held it together until he passed out, then broke out in sobs as I walked out of the room.

Quinn and I watched four -- yes, four -- movies in a row yesterday. Three of which we already owned. I hesitated about paying the money to purchase the fourth one.

"It's twenty dollars, buddy," I said.

"I can handle that," Quinn answered.

HA. Ha ha ha ha ha.

I chuckled so hard that I gave in and paid the money. Well handled, indeed, my little man.

***

On to the news I came across over the last week. Is it just me, or is this week's round-up exceptionally full of good news and hope? Here's to 2015, people.

Why Do Some People Develop Resistance to Cancer Therapies? 

Duke researchers may have the answer, according to a couple of recently-published studies.

"The team managed to map the particular steps that breast cancer cells (along with melanoma and blood cancer cells) use to gain resistance to drugs."

And a Potential New Drug Target for Combating Those Resistant Cells

"Researchers have identified a signaling pathway that contributes to the slow proliferation of difficult-to-kill cancer cells. These cells, which are resistant to current treatments, are believed to be responsible for instances of cancer relapse. The researchers believe that the signaling pathway could therefore provide a potential target for new treatments.

'Most cancer treatments target rapidly dividing cancer cells but leave the slowly dividing ones unharmed and still capable of causing disease recurrence after the initial treatment,' Dr. Ramaswamy adds. 'Our goal has been to understand how these slow proliferators are produced in order to devise ways to eliminate them.'"

FDA Fast-Tracks Drug to Treat Advanced Triple Negative Breast Cancer

"The FDA. . . granted fast track status to sacituzumab govitecan, an antibody–drug conjugate in development for treatment of patients with triple-negative breast cancer who failed prior therapies for metastatic disease, according to the drug’s manufacturer.

The FDA’s Fast Track program is intended to facilitate the development and expedite the review of new drugs intended to treat serious conditions, as well as agents that would fill unmet medical needs.

The FDA based its decision on the efficacy sacituzumab govitecan has shown in patients with advanced triple-negative breast cancer."

Well, This is Potentially HUGE for Her-2+ Breast Cancer Patients...

"Scientists at Dalhousie University’s medical school have found a never-before-used combination of drugs that shut down aggressive breast cancer tumours and prevent the disease from recurring."

(I couldn't not put emphasis on that entire sentence.)

Could This Spell the End of Cancer?

"By tapping into a cell's natural processes, researchers may have found a way to inhibit tumor growth and ultimately kill off cancer cells.

'We believe this small molecule will address an unmet cancer need in an underexplored area that will be rapidly applicable to the clinic,' said Dr. Jerry Shay, vice-chairman and professor of cell biology at the University of Texas Southwestern Medical Center and senior co-author for the study."

New Drug for Hormone-Driven Breast Cancer Set for Approval This Spring

"The first in a new class of cancer medicines, Pfizer's Ibrance, appears poised for approval to treat advanced breast cancer within a few months and could quickly become a blockbuster, some analysts believe.

Those drugs are believed to block enzymes, called CDK4 and 6, that help cancer cells divide uncontrollably."

Breakthrough as Gene Driving Triple Negative Breast Cancer is Discovered

"Scientists have identified the gene behind one of most aggressive forms of breast cancer in a breakthrough which could bring life-saving new treatments.

Triple-negative breast cancer is one of the most deadly forms of the disease and nearly one quarter of patients diagnosed will not survive for more than five years.

Now researchers at Cambridge University and the Wellcome Trust’s Sanger Institute have found that the BCL11A gene is overactive in eight out of ten patients."

Personal Liberty vs. An 85% Chance of Survival for One 17-Year-Old Girl

On the one hand, I'm a strong believer in letting children have some say in what happens to their bodies. Meaning: if Quinn says stop tickling, I stop tickling. And I don't force him to give hugs, much to his grandparents' chagrin. 

HOWEVER, I would certainly make my child receive chemotherapy if there was an 85% chance of survival. There would be no question. She would sit in that infusion center and I would hold her hand through side effects and uncertainty and I would hate it but I would make her fight. (This hypothetical 17-year-old girl child of mine.)

Having gone through what I've gone through to spend more time with my family, I cannot wrap my head around this mother's position one little bit. But I'm curious: what's your take?