Monday, December 21, 2015

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.

Monday, December 7, 2015

The Season for Hope

Many of you know my good news already, that my scans last week before Thanksgiving continued to show no evidence of cancer. What a way to go into the Thanksgiving holiday. And that sound you may have heard? That was Chris and me finally exhaling after 48 hours of holding our breath waiting on results.

As the stress started to dissipate, I came down with another sinus infection and had chemo last week (plus a lunch with Arizona's Governor -- a story for another post, maybe -- and hosted a cookie decorating party with a dozen or so preschoolers over the weekend), so I've disappeared a bit from this space. I've been busy living, which is pretty wonderful. I am so very lucky for this beautiful life.


But I've also been hesitant to talk about my good news too much, in part because so many of my friends are facing disease progression, chemo regimen changes, or the unknown of clinical trials over the last couple of months. These friends post photos from hospital beds of them with their children, and my heart aches for them. Or they post that they have to leave their families -- now, at this time of year, just to emphasize the magnitude of the injustice of it -- to take part in clinical trials to try to put the brakes on their particular form of breast cancer.

Maybe this drug will be the one that finally stops it. 

Maybe this won't be my last Christmas with my kiddos. 

Maybe I can walk today, despite the pain in my bones from cancer's spread. 

I've become a part of this community. These women are my friends. My diagnosis wasn't terribly dissimilar to many of theirs. In some ways, it was worse, since I was metastatic from the outset while many of them thought they were safe with an early-stage diagnosis. My luck could change at any moment, and their stories could be my story. But for now, I'm relatively healthy.

That is no minor thing. As the saying goes, when you have your health, you have everything. I am so very, very lucky. I try to remember that every day.

***


As Quinn and I were putting up Christmas decorations the other day, listening to Holiday Classics on iTunes, "O Holy Night" started playing. We are not a religious family, but it's still my favorite Christmas song. I choked up, watching my son choose where to put ornaments and feeling beyond fortunate that I get to be here to see it.

And then I started crying as I strung the lights, thinking about my friends whose cancer situations are worsening or who are spending this season without family members because of cancer. The music wasn't helping. I'm blaming you, Mariah Carey.

Is this survivor's guilt? Can you really have survivor's guilt when you've been diagnosed with an incurable cancer? Do the holidays make everyone more emotional? Or is it just the sugar highs (and subsequent crashes)? Maybe I just need a break from Chex Mix.

***
Chris is in the town where he grew up the first half of this week, wrapping up things with his mom's estate: a visit to the DMV, a meeting with her accountant, closing of bank accounts, that sort of thing. We have had our own significant loss this year, and it is going to be a tough holiday without my mother-in-law around.

Later this week, I am headed to San Antonio, to attend a program as part of the annual breast cancer symposium there. I am hoping to learn about advances in research and new ideas in the pipeline for eradicating this disease. I am hoping to bring some more good news back to this community of mine, some more reasons for hope.

After all, it is the season for it.

Friday, November 20, 2015

A Million Thousand Hundred Times

The other night, as I was tucking Quinn into bed, I overheard him whispering to his favorite stuffed animal, Bunny.

"Mom, I was telling Bunny how much I love you."

"I heard..."


"I love you a million thousand hundred times," he said. Sometimes it's "to Pluto and back" or "to the Milky Way and back" or "to all of the planets in all of the galaxies." We have a theme.

"I love you that much, too," I replied, my throat catching. Some nights, his sweetness just floors me. Especially when I've got another scan around the corner and he is seeming to grow up more with each passing day. Can I freeze time? Keep that one tender moment locked in the safe space of my heart forever? Keep all of them there?


Quinn Tornado from Jennifer Campisano on Vimeo.

When I was diagnosed, I wasn't entirely sure I'd get to be here right now. In fact, I had a dream shortly after -- sometime in the fall of 2011 -- of  a toddler Quinn holding someone's hand at a funeral I was pretty sure was my own. The statistics said I had a one in five chance of living to see Quinn turn five, let alone see him start kindergarten. Only twenty percent of women in my situation would make it to the five year mark.

This week, Chris and I have toured three different elementary schools trying to decide where to send Quinn for kindergarten next year. For another time: when did choosing a kindergarten get so complicated?

But kindergarten. My boy.

And me. Maybe just maybe going to get the chance to buy him a new backpack next summer, go school supply shopping with him, see all that he has to show us as he learns even more clearly how to express himself.

It could happen.

Monday, November 9, 2015

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. 

Friday, October 30, 2015

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!)


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.

Wednesday, October 21, 2015

Hoping for the Two Percent

Ever since my breast cancer diagnosis, October has become a doozy of a month. I don't know if it's this way for everyone who goes through breast cancer, but I suspect it's tough for most of us who've been told our cancer has spread, that it's no longer considered curable.

It is hard to see the sea of pink -- in the seat-back pockets on my flight home from Missouri on Sunday, there was a flyer telling me I could buy a $2 pink lemonade to support breast cancer awareness. I wanted to scream about how aware I actually am. But Quinn was sleeping on my lap and an elderly woman was sitting beside me, on her way to help her daughter who'd just had hip surgery, so I kept my mouth shut. I raged on the inside.

It was even tough to watch Sunday football with my dad, and not just because the Seahawks keep freezing in the 4th quarter and losing games they should be winning. Pink goal posts and cleats and towels aren't contributing much to the cause they claim to support, and -- at best -- we inch toward better treatments, a few more months of survival (when the average after a mets diagnosis is 3 years), and if we're lucky, milder side effects.

All the while, the general population continues to believe that breast cancer is curable, we need to save the tatas, and early detection saves everyone.

I am exhausted, and it's okay if I blame October for that, right?

To me, this is the great injustice of this sea of pink, these calls to support awareness everywhere you look, most of it not doing much more than marketing products wrapped in pink. I used to think that both awareness and research were important. Now I wonder: Who is not aware?

But also, what do most people really know?

Breast Cancer Education Month doesn't really have the same ring to it.

According to the Story Half Told project I took part in, "Fifty percent of people surveyed said that breast cancer progresses because either patients did not take the right treatments or preventative measures." AND ALSO: "More than 60% say they know little to nothing about metastatic breast cancer." (emphasis mine)

*& %!)%#@!

A man I met a few years ago was saddened to tell me that his mom had beat breast cancer but couldn't beat brain cancer. My bet is that she never had brain cancer, but rather breast cancer that metastasized to her brain. She didn't die of brain cancer, she died of breast cancer. But I did not want to argue with a grieving son, so I simply told him I was sorry.

***

I try to be careful about the language I use. I no longer say I have metastatic breast cancer but rather that I was diagnosed with metastatic breast cancer more than four years ago. Do you see the difference? I don't know whether it changes anything and perhaps it's just superstition. I couldn't even bring myself to participate in a die-in (as proud as I am of the waves these women are making) because I don't want to say I'm dying of breast cancer -- even if 98% of people with this diagnosis do die of it. I have to hope I'll be part of the two percent.

Why does language matter so much? Why do we who've been diagnosed with metastatic breast cancer care whether you know what the word metastatic means?


Why are we over awareness?

We're really tired of our friends dying, for one. We're scared we will be next, even when we hope we'll live to see the next milestone: our child graduating, or getting married, or learning to tie his shoelaces.

I have nightmares about cancer, in the form of unwanted guests, or sharks trying to come onto shore to attack me, or burglars trying to break into my house, and I wake up sobbing and unable to relax enough to fall back asleep without the help of sleep aids.

We want people to understand how scared AND how hopeful we are, more than they will ever learn by purchasing a can of pink lemonade. We hope that one day these campaigns will go beyond awareness and actually do some educating so women (and men) will know their risk, understand what as many as 250,000 of us are living with every day, and maybe start turning some of the pink consumerism into research dollars that will help us have fewer nightmares and celebrate more milestones.

Instead of buying pink stuff this year, please consider donating to a reputable organization that provides money for research. Here are a few I like, in no particular order.

METAvivor.org -- the only organization solely focused on research into metastatic disease
BCRFcure.org -- funds the largest project focused on metastasis in the world; highest rated breast cancer charity in the U.S. according to Charity Watch
Avon Foundation -- contributes to critical research AND provides support services for under-served patient populations
Young Survival Coalition -- support for women diagnosed under the age of 40

Thursday, October 15, 2015

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. 

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. 

Thursday, October 1, 2015

A Story Half Told

So here it is. October is upon us. Tonight, even the lights at the top of the Empire State Building will glow pink.

And Quinn and I are in New York City to experience it. Chris will join us this weekend because he wanted to buy Quinn a hot dog on the Battery Park Staten Island ferry as we make our way to the Statue of Liberty. Still, we're not just here for the cooler temps, the hot dogs, or even the pink lights.

Quinn and I flew out for the launch of a Pfizer-led initiative, A Story Half Told, that aims to change the breast cancer conversation to include stories of those of us living with metastatic breast cancer. The project debuted at Milk Studios last night with a gallery opening of photo essays documenting a day or two in the lives of five of us women, the idea being that photography can make a compelling impact in a way that words often can't or don't express.


Universally, the essays were poignant, raw, and intimately beautiful. You can view them all in their entirety here. In particular, the behind the scenes footage of Holley Kitchen's experience with her photographer, Angelo Merendino, had me completely choked up.

In addition to the photo essay, I was asked to speak at the event.


Here's what I said:

Thank you all so much for being here for the launch of A Story Half Told. My name is Jen Campisano, and this is my son, Quinn — the light of my life.

When Pfizer asked me to be a part of this project a few months ago, I jumped at the opportunity to share my story to a wider audience, to — I hope — give a better idea of what life looks like after a metastatic breast cancer diagnosis. Mostly, it looks like life, with a few more doctor’s appointments.

There are still kids’ birthday parties to attend, laundry to be done, backyard pools to swim in, bedtime stories to be read. There are also port draws, CT scans, chemotherapy appointments, and follow-up visits with my oncologist every few months.

What I want you all to understand from this exhibit is that metastatic breast cancer affects women at all stages of life, from all backgrounds and ethnicities. Cancer does not discriminate.

It is a terrifying, life-altering thing, to be told you have incurable cancer, that you’ll always be in treatment. But I want you to also see how each of us are living in spite of our illnesses.

Most days, we are thriving instead of cowering. We allow ourselves the freedom to rest and recuperate when we need it, but then we get on with the business of life — caring for our children, grandchildren, communities, gardens, and ourselves.

We fall down and then stand up again and again and again, even in the face of grave circumstances. It is what we do.

Quinn doesn’t know any different. I was diagnosed when he was just 5 months old, more than four years ago. I don’t know any different as a mom. We have been together every step of this, he and I.

When I was diagnosed, the statistics said I had a 1 in 5 chance of watching my son start kindergarten. Because of some incredible drugs and my dogged determination (my husband calls it stubbornness) and some very good luck, I have had no evidence of disease for nearly two years now.

I still receive a targeted chemo every three weeks as a sort of insurance policy. I had treatment Monday, then flew out here from Phoenix yesterday when I’d normally be recovering on my couch. I feel a little nauseated, and not just because I’m nervous about speaking in front of all of you.

God willing, I will walk Quinn into his first day of kindergarten next August. With new therapies on the horizon, there’s hope I will dance with him at his wedding, too.

I want that to be the reality for all of us living with metastatic breast cancer. That is my hope for this project: to shed more light and understanding on this disease so more research gets funded so more of us can get back to the business of living.

I am very proud to be a part of this exhibit, which so beautifully portrays the realities of our various lives. With that, here is the incredibly talented photographer who captured my story, Pei Ketron.


***

Maybe we can start to change the conversation about metastatic breast cancer by sharing our stories in new, compelling ways. Please spend some time on the Story Half Told website. Get to know these women, their stories. And then share them, please. The world needs to know, especially as Pinktober descends and pink ribbons fly all around us.

Disclaimer: I worked with Pfizer on a collaboration to raise awareness about metastatic breast cancer. The opinions expressed in this blog post are mine, not Pfizer's.

Monday, September 28, 2015

"How DID you get sick, Mommy?"

To be honest, I'm surprised it took this long. Quinn is a pretty observant four-year-old. He'll often notice the expression on a truck's face in one of his library books and ask me why the truck is angry/sad/has "its face scrunched up like that." He's a master at those find the differences games in his Highlights High Five magazines. And last time I got my hair colored, I joked with my stylist that Quinn would probably notice before Chris. He's an astute kid.

As I was drying him off after his bath Saturday night, Quinn put his finger gently on one of my radiation tattoos, a pin dot in the middle of my chest.

"It's bluish-green, Mommy," and I waited to see what he would say next. Would I correct him if he called it a freckle? How much information should I give?

"How did that happen?" he asked, not quite what I expected to hear, the concern in his face breaking my heart just a bit, but also making me incredibly proud to be this perceptive, empathetic boy's mom. He knew it wasn't something natural.

"It's a tattoo," I said. And I showed him that I have at least three more, two under my armpits and one at the top curve of my right breast. He wanted to see if I had more on my back.

"No, honey," I told him. "There aren't any more."

He didn't ask anything else, so I didn't give him any more information.

***

Quinn and I are preparing for our trip to New York this week (still more on this as soon as I'm able!), for an event at which I've been asked to speak. (By preparing, I mean I've been doing laundry and he's been packing his coloring books and Hot Wheels cars.) I've been asked to share a bit of my breast cancer story at this thing, with Quinn by my side, so I've also been preparing by trying to let him know what to expect.

I've told him I got really sick when he was a baby. That medicine called chemo made me bald, and now I still get medicine to -- we hope -- keep me from getting sick again. I've told him I'm going to talk about that a little.

I haven't told him more because he's only four. I don't want him to know some things yet, if I can help it. I try to only answer the questions he asks. I'm trying to craft a short talk that's appropriate with him by my side but also conveys to a roomful of people the devastation of this disease. I also have chemo tomorrow, so I will be portraying a very real version of what life is like after a metastatic breast cancer diagnosis when I get up to talk two days later.

Please wish me luck.

***

Last night, Quinn and I were looking at pictures of when he was a baby, and came across a couple in which I am bald.




"How did you get sick, Mommy?" Quinn asked, a variation on a themeapparently.

"I don't know, buddy. They don't know that yet."

They don't know.

Wednesday, September 23, 2015

Where to Turn for Help After a Cancer Diagnosis

I've got a few things brewing over here, including an event that's taking Quinn and me to New York City next week (more on that to come) and the fact that I sent my completed manuscript to my agent last week (!!!) I'm excited to share all of this with you guys as it unfolds, and I hope with every ounce of my being that what I'm doing -- all of it -- is of service to the metastatic breast cancer community.

{here's a hint about our NYC trip}
As part of one of these initiatives, I was on the phone the other day with a woman who's working on a story about living with metastatic breast cancer for October, that loaded month, and she asked me whether I felt there had been enough resources and support services when I was first diagnosed.

Um, NO, is the quick answer.

But it got me thinking that I should write about the resources that have emerged and what I've found useful, in case it might help someone else out there. Have any to add? Please leave a note in the comments!
  • One major source of information was Dr. Susan Love's Breast Book,* which is now in its sixth iteration. I especially appreciate that this new edition includes an updated chapter on metastatic disease that offers some hope for emerging therapies and longevity. This book has been called "the bible for women with breast cancer," with good reason. When I was first diagnosed, I wanted to know as much as possible about the cancer inside of me, without the fear that can be brought on by "Dr. Google." Here was my answer, clearly laid out in the pages of this easy-to-read book. Fully indexed and written for the layperson, Dr. Susan Love's Breast Book takes a comprehensive look at breast cancer prevention, staging, treatments, pathology, and emerging research. In a field where new information is always emerging, this book offers a treasure trove of the latest data.

  • I have a love/hate relationship with support groups, both online and in-person. I love the potential of what they have to offer, but participating in them can be an emotional roller coaster. After all, you get close to people and in many cases, you have to face their worsening health or death. For awhile after my first course of treatment -- and every once in awhile since then -- I need a break to let my emotions recover a bit. When I was first diagnosed, a friend referred me to the Young Survival Coalition's Facebook support group. At the time, it was both a treasure trove of other women who were going through the same treatments as I was and a place where I didn't feel I completely fit in because there weren't many women with metastatic disease (fortunately). In the last four-plus years, I think YSC has done more to support metsters, but other groups targeted at young women with Stage 4 breast cancer have also emerged on social media. If you want to be added, find/message me on Facebook (link from the button on my blog). Note that there are fairly strict privacy rules on these boards. 
  • Speaking of social media, you may have heard me mention the Twitter chat with the hashtag #bcsm. This takes place on Monday nights at 6 PM Pacific / 9 EST. Topics range from the invisible scars of breast cancer to parenting with cancer to how to change the conversation around metastatic breast cancer. The chat is for all stages and ages, but is an excellent way to share information and find support. 
  • I have mentioned before how lucky I am to have the health insurance and access to care that I do, but I know everyone isn't so fortunate. I do think that the Affordable Care Act has made significant strides in ensuring access to care. I, for one, am relieved that I can't be denied insurance despite my poor health history. For assistance with co-pays and drug costs, check with the drug company providing your drugs. I know Genentech, the company that makes Kadcyla, has patient assistance programs to offer reduced-cost drugs to patients whose insurance doesn't cover the cost.**
  • On a similar note, the reason I walk in the Avon 39 Walk to End Breast Cancer every year is because of the programs they fund to provide everything from free screenings to women who can't afford them to meals to people who've been diagnosed with cancer. Obviously, services will vary depending on where in the country you are, but here are a few national organizations:
    • Cleaning for a Reason: "Our mission is to give the gift of free house cleaning for women undergoing treatment for any type of cancer. Our goal is to let these brave and strong women focus on their health and treatment while we focus on, and take away the worry and work of, cleaning their homes– free of charge." I reached out to this service early on in my treatment and they didn't have any partnered cleaning companies in Phoenix/Scottsdale, but they may be worth a try in your area.
    • Look Good/Feel Better: Because sometimes a little blush does make it easier to face the day.
    • Little Pink Houses of Hope: Offering family beach vacations/retreats for people directly affected by breast cancer.
    • First Descents: If you're feeling adventurous, First Descents offers surfing, rock climbing, white water rafting, and ice climbing (!!) trips for cancer survivors.
  • Other national organizations offer links to local support services. For example, the American Cancer Society has a location-specific searchable database for everything from free wigs to counseling/therapy. Living Beyond Breast Cancer is another excellent source of information, including a search function for clinical trials specific to metastatic breast cancer. 
  • Finally, I have heard excellent things about the Livestrong Foundation's fertility services, for those of us who've lost ours to cancer and/or cancer treatments.
What resources do you wish there were more of? What have you found especially useful? What have I left off this list?? And PLEASE let me know if you've gone on a surfing trip and/or family retreat -- I'd love to hear how that went!

* Dr. Love recently provided me with a free copy of this 6th edition, but I already had the 4th edition on my bookshelf. All opinions on the book are my own.

** One of my best friends works for Genentech, but I have not talked to her (or the company) about this post.

Friday, September 18, 2015

Here's to More Birthdays

Birthdays post-cancer are a funny thing. I mean, of course they're great and we want more of them, but being diagnosed with cancer doesn't mean you don't notice the lack of collagen as the years pass. Or get irritated by grey hairs you-know-where when another part of you remembers you should just be happy to have hair.

Cancer doesn't give you a free pass when it comes to being weirded out about all the things that happen as you get older. For example, I have what I thought was the makings of a pimple on my chin, but now I'm pretty sure is just an ingrown hair. On my chin. Why? WHY ARE HAIRS GROWING THERE BUT NOT ON MY EYEBROWS!!!

So, I'm ecstatic to have more birthdays but also not going to pretend I don't notice the fine lines around my eyes or the fact that I can't eat peanut butter straight out of the jar (sometimes with a spoon) without then having to get raised eyebrows from the nurse at my oncologist's office as he weighs me in and sees I've gained four pounds. Sigh. But also? I don't really care. Because you only live once, and sometimes peanut butter is worth it.

I'm talking about getting older because my 37th birthday was last weekend. Somehow, that makes FIVE birthdays since I was diagnosed with metastatic breast cancer. SO, YES, I HAD A CUPCAKE. And a bourbon drink. What can I say? I celebrated.

I celebrated with friends and my husband who arranged a small gathering at a local...speakeasy? Hipster dive bar? There was skee ball and air hockey (at least I think. Us parents sat and visited the whole time. We were just happy to have a night of uninterrupted conversations. Even though, sure, ninety percent of those conversations were about our kids.)

We were clearly the early crowd, arriving at seven and ordering menu items like charcuterie and arugula flatbreads. Then around 9:30 things shifted, and we were easily the oldest, quietest, least collagen-ed people in the place. I vaguely remember a time when Chris and I used to leave to go out for the night around 10 p.m. (Here's photographic evidence.)

{circa 2006, celebrating Chris's 30th birthday}
But last weekend, we were home by 11, in bed shortly after, and I was still tired for two days because of it. And here's where I don't know whether to blame cancer treatments or aging or possibly even just being a parent to a little boy who wakes up ready to run and wrestle and do all of the things at seven a.m. But life is short, so why not do all of the things?

Here's to more birthdays and more doing and more celebrating (but maybe less peanut butter).

Wednesday, September 9, 2015

What to Eat During Chemotherapy

I kind of can't believe I've had a blog about living with breast cancer for more than FOUR YEARS now, and I haven't done a post about what to eat when you're going through chemo. I don't think. If I already have, go ahead and chalk it up to chemobrain. I've done posts about that, right?

Hint about what to eat: it's whatever you can stomach. 

Right now, even the word stomach sort of makes me want to vomit. I had treatment yesterday, and even though I'm on antibody-drug conjugate -- a targeted chemotherapy delivery method that isn't nearly as bad as the broad spectrum drugs I used to receive (I'm talking to you, carboplatin and taxotere) -- there are still some side effects. I've talked about the fatigue. I've probably talked about the nausea in passing.

But I don't know if I've talked about any solutions.

Here's what works for me (sometimes).

Zofran and/or Compazine: This is not the time to avoid medicines that can offer serious relief, with the important caveat (and possibly too much information) that anti-nausea meds can cause headaches and constipation, so you may want to do some cost-benefit analyses.

Ginger: Trader Joe's carries a great Ginger Beer (non-alcoholic, don't worry) that works wonders for staving off the waves of nausea. They also have some ginger chews that help when nothing else seems to.

Water: It's about the last thing I want in the days after my treatment (think how terrible a tall glass of water sounds when you're hungover), but water, especially with electrolytes, helps flush your system and is one of the truest ways I've found to feel better faster. When I was on broad-spectrum chemotherapy, I resorted to -- gasp! -- Gatorade or popsicles when my mouth sores were out of control. I know, sugar is evil, but sometimes it's a necessary evil. Kind of like chemo.

Smoothies: Fresh vegetables sound downright repulsive in the days after treatment, as good as I know they are for me and as much as I know my body needs the vitamins and nutrients to heal. So I've jumped on the smoothie bandwagon and make a version many mornings of the week. Bonus: it's one of the only ways I've found to get Quinn to "eat" his greens. Win/win.

Green Smoothie
Serves 1-2

1-2 ripe bananas
large handful of spinach and/or kale leaves
generous splash of orange juice or almond milk
1/2-1 cup other fruit of choice -- pineapple, mango, apple, or a combination
ice cubes

Throw everything in a blender and blend until smooth, then adjust taste to your liking. Sometimes I add a scoop of vanilla protein powder or a handful of raw almonds.

Banana Bread Smoothie
Serves 1-2

1 c. almond milk (I like unsweetened vanilla)
1-2 bananas
1-2 Tbsp. almond butter
ice cubes

Blend until smooth. Top with grated nutmeg, if you like. I serve mine with a colorful straw because it makes me smile.



Comfort Foods: This isn't the time to be concerned about your diet. Of course you want to be as healthy as possible, but sometimes homemade mac-and-cheese or stuffed shells are the only things that sound appetizing. I will say beware of tomatoes and tomato sauces, especially on broad-spectrum chemotherapies that can alter your taste buds and leave you with mouth sores. Acidity is not your friend on those drugs. But some soft pasta in a homemade salty chicken broth with sweet bites of chopped carrots? That could get me through some terrible queasiness.

Medical Marijuana: (NB: I have not tried this because I am prone to anxiety, in the past marijuana has tended to bring out the paranoid in me, and I do not need more of that in my life.) I have heard though that medical marijuana can work wonders for spurring a person's appetite. I am in favor of whatever works so you can keep your strength through treatment.

***

If all else fails, remember this:


What are your go-to recipes when you're feeling hungover from treatment? Do you have any favorite cookbooks? What alternative solutions have you tried to ease your nausea (or other treatment-related side-effects)?

Friday, September 4, 2015

Around the Web: End of Summer Edition

Kids are back in school everywhere, it seems, based on all of the adorable Facebook posts of your kids holding signs about what grade they're entering. This is one of my favorite times of year on social media. Pumpkin patch season is next up, I think.

Anyway, here's my husband (a professor) with his take on the meme (and yes, this is how he typically dresses for work).


It's true: save for this weekend, summer's just about over (even if our thermostat begs to differ). And I owe you all some news. So here's the research I found around the web over the last couple of months. I wasn't just eating bonbons by the pool, you guys. Who am I kidding? I wasn't doing that at all, but a girl can dream.

Scientists Turn Cancer Cells Back to Normal, Could "Switch Off" Disease

WELL, THIS WOULD BE AMAZING. Clinical trials stat, please.

"For the first time, aggressive breast, lung and bladder cancer cells have been turned back into harmless benign cells by restoring the function which prevents them from multiplying excessively and forming dangerous growths.

Scientists at the Mayo Clinic in Florida in the U.S. said it was like applying the brakes to a speeding car.

So far it has only been tested on human cells in the lab, but the researchers are hopeful that the technique could one day be used to target tumours so that cancer could be “switched off” without the need for harsh chemotherapy or surgery."

No Surprise Here: Cancer Drugs Are Freaking Expensive

"[The report] goes on to matter-of-factly lay out the harsh financial realities many people face after a cancer diagnosis, a suite of diseases that will affect 1 in 3 individuals over their lifetime. While the cost of new drugs has soared to well over $100,000 a year, the out-of-pocket expenses patients are expected to bear have also gone up to 20 to 30 percent. Because of these costs, about 10% to 20% of patients with cancer do not take the prescribed treatment or compromise it."

So Here's to Generic Drugs!

"There's new evidence that two inexpensive generic drugs can improve survival rates for women who develop breast cancer after menopause.

In two large studies published Friday in The Lancet, a class of hormone-therapy drugs called aromatase inhibitors and bone-preserving drugs called bisphosphonates improved survival and recurrence rates in postmenopausal women with early breast cancer."

As if You Needed It: Another Reason to Quit Smoking

But none of my readers still smoke, right? 

"Among more than 800 women with breast cancer, those who had smoked for more than two decades had at least triple the odds of dying of any cause, or from breast cancer in particular, compared with women who never used cigarettes."

A "Glimmer of Hope" for Triple-Negative Breast Cancer Patients

"Using mouse models of triple-negative breast cancer, the team reduced expression of IL13RA2 in cancer cells. They found that lowering IL13RA2 was associated with much slower tumor growth, and the cancer cells were much less likely to spread to the lungs.
Based on their findings, Thiagalingam and colleagues believe IL13RA2 plays a role in the growth and spread of triple-negative breast cancer, suggesting the molecule may be an important drug target for the disease. Thiagalingam adds:

"This discovery offers a glimmer of hope for patients stricken with BLBC. Personalized cancer therapies could be developed by targeting breast cancer cells that express copious levels of IL13RA2."

What is more, the researchers say their findings could lead to treatment strategies for other forms of cancer involving high IL13RA2 expression, such as ovarian, brain, colon and pancreatic cancers."

And More Options for Her-2+ Patients (Like Myself)

"Treatment-refractory HER2-positive metastatic breast cancers are becoming increasingly rare due to the recent advent of multitargeted HER2 receptor blockade mechanisms that utilize novel antibodies and antibody–drug conjugates even as the roster of new therapies under study for this patient population continues to expand, according to Mohammed Jahanzeb, MD.

“The landscape is really shifting,” said Jahanzeb, a breast and lung cancer expert.

Jahanzeb said many novel agents including antibody–drug conjugates, bispecific antibodies, and immunotherapies are being evaluated for patients with recurrent disease at a time when outcomes are improving. “The field is very rich,” he said. “Actually, what is not so rich is access to these patients [for clinical trials]. Luckily for them, fewer are relapsing.”"

Further Evidence that Our Immune Systems Have a Role to Play in Fighting Cancer

"A cancer patient's chances of survival seem to depend partly on activity in specific genes and immune system cells, a new study suggests.

Using data from nearly 18,000 people who were treated for cancer, scientists found that particular patterns of gene activity corresponded to patients' survival odds -- across a whole range of cancers, including brain, breast, colon and lung cancers."

Another Novel Approach? Overstimulate Certain Cancer Cells to Kill Them

This is not yet available in a clinical setting, but researchers are optimistic.

"A drug candidate that overstimulates proteins crucial for tumor growth shows promise as a new strategy to treat a wide range of cancers. The demands of rapid cell division put a strain on cancer cells, and the approach works by tipping cell stress over the edge. In the August 10 issue of Cancer Cell, American researchers show that the drug candidate inhibits tumor growth in a mouse model of breast cancer and efficiently kills a broad range of human cancer cells.

"No prior drug has been previously developed or proposed that actually stimulates an oncogene to promote therapy," says co-senior study author David Lonard of Baylor College of Medicine. "Our prototype drug works in multiple types of cancers and encourages us that this could be a more general addition to the cancer drug arsenal.""

Blood Test Could Predict Breast Cancer's Return

I'm not sure if I'd want this, for the same reasons I won't go see a psychic. Would you get the test?

"An experimental blood test may be able to predict whether a woman with breast cancer will suffer a relapse months before new tumors would be detectable on scans, researchers said Wednesday.

The technology, described in the journal Science Translational Medicine, works by detecting cancer DNA that circulates in the bloodstream.

While the test is not yet available to the public, and likely will not be for years to come, researchers are hopeful that it could help refine personalized treatments for cancer and perhaps lead scientists further down the path of finding a cure one day.

"We have shown how a simple blood test has the potential to accurately predict which patients will relapse from breast cancer, much earlier than we can currently," said study author Nicholas Turner, team leader in molecular oncology at The Institute of Cancer Research, London."

Tuesday, September 1, 2015

What I Wish I'd Known When I Was First Diagnosed

A few months ago, after being asked for the umpteenth time what advice I'd give to someone newly diagnosed with advanced breast cancer, I reached out to pose the question to the women in my online support groups.

I can never think of just one answer to this question. I say things like:

  • Be your own advocate.
  • Ask for help from those who love you. 
  • Try to make the most of each day, even when you feel terrible. 

But it never feels like quite enough. So here's what other women who've been down this rough road have to say on the matter.

{photo credit}
Find support! Cancer is hard and stage 4 is even harder. I always suggest breastcancer.org. -- Jenny

Prioritize carefully. -- Jimmie 

I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support". I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa

I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie

The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal

get rid of drama (including people)....simplify.....and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley

Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches - but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann

Learn to advocate for yourself. -- Karen

Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda

Something for anxiety AND a sleep aid. -- Susan

Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily

I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen

Don't just try traditional medication. Go Asian, drink juice, exercise, and pray...pray like never before! -- Melanie

LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa

Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa

Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn


The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany

There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things...always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit

Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna

Mine to share would be to "Expectations breed limitations...be present!" Finding yourself and trusting yourself is very liberating. -- Wendy

You MUST be your own advocate. -- Jody

Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia

I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi

Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne

We never have another chance at today, so make the best of it! -- Catherine

I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi

LIVE every day! -- Kelly

Find a doctor you love and trust. It makes the ride less horrible. -- Beth

Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen

Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet....you're probably going to be around much longer than what you think. -- Annelie

I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura

Don't panic. -- Anne

BREATHE! -- Jessica

Friday, August 28, 2015

The State of My Eyebrows (with Video!)

I never imagined "eyebrows" would be on my birthday list, but there they are, staring me down as sure as age thirty-seven is just around the corner. Nope, I am not complaining. I am happy for every year of it, but it is downright weird to be approaching my late-thirties. I still feel like I should be in law school babysitting for people in their late-thirties in order to have some grocery money.

Yet here I am, thirty-seven on the horizon, and my eyebrow situation has not improved much over the last couple of years. Chris asked me -- over bath time for Quinn, which is when we have time to talk lately -- how much they cost.


"Between $200 and $500, depending on who you go with," I told him.

"I feel like tattoos on your face aren't exactly the time to go with the discount person," he reasoned. "Unless you're Mike Tyson."

True, but even at the costlier, fancier place, the thought of tattoos -- specifically tattoos on my face -- scares me. I'm scared of both the pain and the permanence. I mean, what if I don't like them? What if the artist has a muscle spasm mid-brow? What if I look surprised or angry or any number of emotions expressed by one's eyebrows for the rest of my life?

And then Quinn broke my train of thought and asked why I would need someone to put eyebrows on my face. I could feel the mood shift as Chris waited to see how I would answer.

"Because I had to have some really strong medicine that made all my hair fall out, and all of it grew back except my eyebrows," I explained.

Quinn's eyes grew even more huge as he blinked back shock and processed the idea of something so strong it could make your hair fall out, and I realized he has no recollection of that time in our lives. Most likely because I am light years behind on putting together any kinds of photo albums from his first four years. We don't spend our evenings flipping through and reinforcing memories the way I did with my mom when I was Quinn's age. This is one huge downfall of the digital age, I think, but that's a whole other blog post. 

Have I avoided it because I don't know how to talk to Quinn about cancer? I have a therapy appointment for that exact topic tomorrow. I will let you know how that goes (and whether I have any major breakthroughs because this is still my biggest hurdle, how to explain what I'm living with to my son.)

In any event, here is a little something about my eyebrow process each and every day. In a nutshell, this is why I'm considering tattoos. Have you done them? Considered them? Would you? Let me stop before this gets to Green Eggs and Ham territory. 



Products used in this video and/or products I've found useful:

Makeup Forever's Aquabrow

MAC's brow pencil in Lingering

Anastasia Beverly Hills' Brow Powder Duo

Angled Eyebrow Brush


Tuesday, August 18, 2015

What I Did On My Summer Vacation

Summer's are for leaving Phoenix as much as possible, it's true, but we are outdoing ourselves this year. Quinn is fond of saying we have to leave or we'll burn up (which might not be far off of the truth). One friend on Twitter asked me if I was moving based on this photo I posted about leaving northern California.


No, is the answer. We don't have any plans to move anytime soon. As much as I love northern California, we were there to say farewell to my husband's childhood home, not put down roots (although I have to say those Santa Rosa roots look good on us).


In Santa Rosa, we cried and reminisced and told stories about my mother-in-law's giant heart and proclivity for ice cream and possible hoarder tendencies. We hugged family and old family friends and I tried not to think of how many memorials I've attended in the last several years (too many). We packed up memories and memorabilia stored in a house full of love and a lot of pigs (we could have started a pig museum). We sent a few items with sentimental value home to Phoenix and helped Chris's brother get the house ready to be sold. We said good-bye.

Before Santa Rosa, Quinn and I traveled up to Seattle for some healing time in a place that always soothes my soul, with people who never fail to fill our hearts to overflowing. Chris had a work trip to Mexico so I took the opportunity to leave town as well. We hiked to a waterfall where Q accidentally took a dip in a creek and told me the water was "as cold as that time we went to the snow with Grandma Maryann!" How's that for the opposite of Phoenix?




We rode the ferry up to Vancouver Island, where we built castles out of shells and identified whale bones on the beach and made brownie sundaes with Chris's Aunt Kathie (who always knows how to cheer us up).

Photo taken by Quinn!


We went to the top of the Space Needle, and I fell in love with my home state all over again. I drank a lot of coffee (I've heard it's good for the liver). And we roasted marshmallows to make s'mores and celebrated my best friend Alana's birthday as she and I realized we've been leaning on each other and reading each other's minds for more than two decades now. 




I came home practically begging Chris for a place in Seattle (even despite this article). He said I just need to sell my book. I'm working on that. 


After a blissful week in the northwest and an emotional week in Santa Rosa, we drove south east, my husband tells me, to Sacramento for my college friends' reunion -- which this year included 25 of us, eleven of whom were preschoolers ranging in age from eleven months to five years old. It was blissful in its own way, filled with the giggles and cries and overall adorableness of children who are forging the next generation of friendships amongst my tribe. It's pretty special to see.



I've been absent here because I've been really present among some of my favorite people, something I've learned the importance of over and over again the past four years. There is nothing quite like bookending a memorial service for your mother-in-law with separate visits with your best friends and their children for helping your heart heal.

I am so lucky to have such special people in my life (and fortunate that I've been healthy enough and have the means to travel to see them). I hope I don't take that for granted. I hope you all know how much joy and peace and promise you bring to my life. Thanks a million times over for that.

We got home Sunday night, in time for me to return to reality (and chemo) yesterday. As I put it on one Instagram post, "Home from a beautiful, soul-restoring trip to California that broke our hearts and then mended them in the most beautiful way, surrounded by the love of family and friends who are basically family. We are so blessed."

And today, I got to see Quinn off to his first day of his last year of preschool. Maybe it's the steroids, but I was pretty choked up this morning. I am so grateful to be here, to witness this. Four years ago, when I was diagnosed (cancerversary coming up tomorrow), I didn't quite think it would be possible. I repeat: I am so very lucky.