The After Me... Five Years Later

Five years. FIVE. YEARS! 🎉

This month marks my 5-year milestone of completing adjuvant endocrine therapy. I met with my oncologist today to discuss next steps. We’ve completed standard therapy but due to my age at diagnosis, high risk of recurrence, and current data, we agreed on a plan moving forward.

Five years ago, the thought of making it to this point filled me with overwhelming dread. Five years seemed incredibly far away, and with the whirlwind of diagnosis at 18 weeks pregnant to surgery to chemo to induction to radiation to the end of active treatment at four months postpartum, I hadn’t had much of a chance to sit with my feelings and truly understand what survivorship meant. I didn’t realize that the 𝘣𝘦𝘧𝘰𝘳𝘦 me would cease to exist and how hard it would be to reconcile with the 𝘢𝘧𝘵𝘦𝘳 me.  I didn’t fully grasp how much the side effects of the meds and injections would impact my day to day, that some of the smallest tasks like opening a jar or getting up from the floor would leave me frustrated and in tears. I naively thought that mammograms and screenings each year would become easier, that waiting for results wouldn’t quite literally paralyze me. I definitely didn’t know how incredibly lonely it could feel at times.  

I look back now and acknowledge that I did what I always do when something terrifies me: I kept going. Not a day goes by where the thought of cancer coming back hasn’t come – it lingers, but doesn’t permeate. I haven’t moved on from it, it’s that I accept it as part of my journey now, and choose to share it (because even when it feels lonely, I do know that I’m not alone).

Yes, a lot can happen in five years. I finished my masters. We made it through a pandemic. Our newborn is about to start Kindergarten! I gained three nephews and at the same time, we heartbreakingly lost three friends. I was laid off and started a different career path (exactly one year ago!). We celebrated, we grieved, we traveled, we slowed down (a little). And then earlier this summer, my father was diagnosed with cancer. Accompanying him to his first infusion felt both familiar and foreign, now that I’m on the “other side.” Oh, the fragility of life.

What choice did I have really, then to move forward? To embrace the quiet suffering, the wrath and ugliness that cancer leaves behind? To not allow the fear to overtake me and instead to walk alongside it? I choose this life, both heavy and light.

So as with every milestone, I celebrated it – with a large coffee, listening to new music, and a sushi feast with my family.  If there’s anything I’ve learned, it’s that it’s always been about #thelittlethings. 🎀 #breastcancer #survivor #fiveyears

Opting In

 “Opting In”

Thanksgiving 2024

 

This week, I’ve been running on fumes.  Between Monday and Tuesday, I had barely slept a total of nine hours and was in desperate need of coffee.  I made a quick stop downstairs at our café in the office and when I tried to pay, I was told that the person who had checked out before me had covered it.  It was such a kind and surprising gesture, and changed the trajectory of my entire day.

How often does the simplest of gestures stop us in our tracks?  My answer is, all the time.  I just need to remember to be paying attention.

Last year at this time, I had been marveling about being given the gift of time.  With my go-go-go mentality and constantly moving from one activity to the next, I found a healthy way to slow down.  I donated time and energy to the causes I wanted to support, attended every one of my kids’ events at their schools, immersed myself in nature on long walks, enjoyed leisurely time and uninterrupted conversations (and coffee!) with my family, and allowed myself to rest more than I have over the last decade.  I wrote letters and sent care packages just because.  I was grateful for the simpler things.  I was present.  I was involved.  I was able to say yes more often, and I recognized opportunities as what they were.

So when spring rolled around and we had a once-in-a-lifetime kind of opportunity to join the July cohort in Sintra, Portugal, Anthony and I knew the answer was yes.  With just over two months to prepare, our first order of business was scheduling our kids’ passport appointments and then working to “undo” our schedules in July – camps, Sophia’s birthday bash, a concert.  It was all “small stuff,” Anthony said, and I’m good at logistics.  We cleared our commitments, packed up our most-needed items (it wasn’t easy), and off we went on the most unique adventure to date – excited, anxious, and grateful.

Four weeks abroad did our family good.  We realized, early on, that we didn’t need a lot to experience a whole heck of a lot.  We savored our core family moments walking to and from school, embracing the culture, meeting new people, trying incredible food, and exploring what soon felt like our town.  Anthony and I looked forward to our mornings together to grab pastries and coffee before setting off on a hike to a castle or a hill to climb (there were many) for sweeping views of the lush landscape, with Old City below.  Our kids made us proud with their resilience and bravery.  We said yes (because when would we have another chance?).  We did things that scared us.  We did things that moved us.

Thinking back to that trip, I’m reminded of kindness, of community, of love for one another.  I’m reminded of the small stuff, because in the end it’s those ordinary moments that fill our days.  I’m reminded to do things because they scare me.  And I’m reminded to find that healthy rhythm again that drives and invigorates me.

This Thanksgiving, I’m opting in.  I choose to be thankful.  I say yes to helping my neighbors and paying it forward.  I treasure the time that I’m given… because it truly is a gift.

How often does the simplest of gestures stop us in our tracks?  My answer still is, all the time.  And I’m all in.

Got Screened?

The screenings don't get easier.  My oncology team recommended additional screening in between my mammograms so every 6 months I'll have imaging.  I understand the necessity, but the days leading up to my tests plague me with anxiety, nearly like the kind I felt the night before infusions when I'd be a crying mess at the dinner table.

It's the fear of the unknown, the "what ifs."  What if they find something?  What if the cancer comes back?  What if I have to endure chemo again?  What if... That fear can almost be debilitating.

It doesn't stop me, though.  I never miss my appointments.  I know how important they are, not only for me, but for my family.

I had my first breast MRI a few weeks ago.  If you don't know how breasts MRIs are done, neither did I until it was being explained to me.  You lie flat on your stomach with your breasts hanging down and arms straight up.  The IV didn't bother me.  (Sadly, I'm so used to needles by now).  The prep didn't bother me.  The temperature in the room didn't bother me.  It wasn't until I was in the machine with all the clamoring and beeping that I started to feel panicked and had to take deep breaths (moving as little as possible) to calm myself down.  And afterwards, I felt woozy because I hadn't been able to eat a meal all day because of the nerves.

Minutes later, I had my results: Normal.  No evidence of breast malignancy.

I could breathe again... at least, for another 6 months.

Get those screenings and do those self-exams!  They could save your life.

Timely

"Timely"

Thanksgiving 2023

 

Time is elusive.  We go about our every days in measurable ways – getting the kids off to school, our 9-5s, appointments, dinner, lessons, bedtime, prep for the following day.  Our weekends are packed full of activities.  We find ourselves rushing from one thing/place to the next, and then impossibly the season has changed again, my son has somehow grown out of everything, and my daughter is talking animatedly about the origins of Thanksgiving and how it can be a painful reminder for many Native Americans... so is it okay to celebrate?  [Insert mind blown emoji].  The kids keep growing up and outwards.  We keep moving forward and onwards.  The cycle continues.

 

We may not realize that any of it, or all of it, can be like balancing on a tight rope.

 

I’ve always taken pride in being a working mom; I loved my job, I loved being a leader.  I constantly strived to find ways to become even more efficient with snippets of time throughout a day.  I continually sacrificed sleep and my health at times because I’m a giver – as with anything I set my mind to, I gave it my all.  Work was no exception; I would often be responding to e-mails or messages late into the night or pre-dawn hours, on-call and available whenever I was needed despite having young children or going to grad school or being diagnosed with cancer and undergoing treatments.  Despite those incredibly rough pandemic years.  I was there.  And because it never quite felt like there was enough time, I didn't waste any.

And then one day… I lost my job of 11 years.  It was unexpected and scary, and it hurt, a lot.  It was humbling.  It felt a little like time stood still for a moment.  Everything I once knew, over a decade of our practiced routine, that fragile balance, had toppled over, and I was falling.  There was no safety net to be found.

 

When I found my footing though, I realized, suddenly and remarkably… I was blessed with time.

 

This was an opportunity to decide how to spend my days.  Where to focus my energy.  Truly think about what I want to do long-term.  Tackle projects at home.  Share my talents volunteering.  Ask myself some tough questions about how to be a better partner and supportive wife, daughter, and sister.  And realizing what could wait.

 

This year, I’m grateful for the beauty of nature.  For long walks and companionship, leisurely visits with family.  For extra snuggles and sleeping in.  I’m thankful to be able to attend the kids’ school events and serve on committees, to volunteer at the food pantry, to help organize at church.  I’m enjoying untimed conversations, checking in with friends old and new, sending surprise care packages “just because,” honoring people we’ve lost this year in special ways.  I’m learning to give more while being okay with letting go.  I’m decidedly present, and here, and still have not wasted a minute.  I’m savoring time.

 

I’m savoring momma and daughter dates to an amusement park, art class, or show.  I look forward to daycare pick up when my sweet boy runs across the field into my arms shrieking “Mommy!” with delight; when he holds my face in his hands and tells me I’m “so pretty” and “the best momma in the world.”  I enjoy listening to my bright girl read the elaborate stories she’s written and responding to her rapid-fire questions when she’s curious about a new topic.  I have fun teaching little man to do chores and to dress himself and cheering him on when he gets it just right (on his terms, not mine).  That nagging mom guilt for having to divide my time?  It’s dissipated – I’m all in.

 

It's temporary, I know… but for now, I’ll take it.  I’ll recognize and cherish it for the gift that it is.  I’ll soak up the moments.  I’ll listen for the sounds of my rowdy family gathering at my parents’ house and the side conversations at the ever-growing kids’ table.  I’ll marvel at how we’ll barely make a dent in our traditional-American-meets-Chinese feast.  I’ll catch up with my cousins as we watch our own kids and their cousins play, the volume crescendo-ing usually after they’ve had a taste (or three) of dessert.  And I’ll be so grateful – for togetherness, for family, for time.  For an amazing husband who assured me it would be okay and encouraged me to take the break.  

 

I’m thankful for being given a different lens and a way to refocus.  For the not knowing, and for the finding me, again.

full circle

“Full Circle”

Thanksgiving 2022

Last year at this time, we were in sunny Florida, taking advantage of Sophia’s week-long Thanksgiving break from school with our first big road trip with the kids.  My mother-in-law (Mu) had surprised us after we had arrived, and we spent the next few days soaking up the sun with her and Nan, Aunt Colleen, and Uncle Mark, enjoying seafood outdoors by the water, walking on the beach, visiting Homosassa Springs Wildlife State Park (one of our favorites) and “Monkey Island,” kayaking, and staying up late with the kids.  One day we ordered a Greek feast from Tarpon Springs for dinner and I remember finding ways to use our leftovers with our Thanksgiving meal.  Speaking of Thanksgiving, Eli fell asleep in the stroller before the table was set and then woke up later to share in the festivities with Grandma Carol.  Sophia wrote a story that she asked everyone to read, and I think we’d all agree that Uncle Mark’s interpretation was the best.  The next day, we met up with more extended family and then were on our way to Savannah for an overnight stay on the ride home.  It was such an amazing time together and a memorable trip for the kids.

Leading up to the trip, I started a gratitude tree with the kids where every night in November, we’d write something we were thankful for on one of the leaves to gradually fill the branches.  We were filling up two trees in parallel so we could surprise Aunt Colleen and Uncle Mark with theirs in Florida, and it served as a centerpiece on the table the whole time we were there.  Sophia has still been talking about that exercise so earlier this week, I asked her to decorate the following leaves on her own for a virtual gratitude tree.

Sophia is thankful for: Mama, Dada, Eli, family, and Bianca, her cat.

What this demonstrated to me, so simply, were a few things.  She is thankful for the people around her.  We, essentially, are her circle of trust (yes, a Meet the Parents reference).  She holds those who are gone dear to her heart – we lost Bianca over two years ago, but Sophia still talks about her frequently.  What our seven-year-old depicted so beautifully and easily was what matters most to her.

Thanksgiving has a way of teaching me to reflect and reset my perspective every year.  Amidst the flurry and clamor in the kitchen with every available surface in use, tripping over our kids running through and forging a path where there is none, a cacophony of clanging pots and pans and little feet and oven timers beeping and laughter (and sometimes yelling), I feast on all the welcome noise and delicious smells and unruly scenes before me.  For in this disorganized chaos, I see life – messy, cluttered, unscripted life – and I am reminded of what we try to teach our children all year.

Yes, there are plenty of big events to remember – trips, holidays, birthdays, celebrations.  Yet I’d like to think that our kids can discern those “in-between” moments that fill up our days and the leaves on our gratitude tree.  Sophia’s excitement for school.  The proud look on Eli’s face when he can put on his shoes.  How Sophia says “Eli” (uh-lie).  When Eli watches Sophia do something like a hawk and then attempts to do the exact same thing a second later.  Sophia singing all of the words to a Red Hot Chili Peppers song.  Eli requesting “Dirt” (“Buy Dirt”) and “Wagon Wheel” after reading 23582350 books before bed, no matter how many times you tell him it’s the last one.  Watching Sophia swim or run on the track team or skate on the ice like a natural – she can do whatever she sets her mind to!  Eli with his practiced “please” and “thank you.”  Sophia walking her brother down the aisle at church and to Sunday school.  Listening to Eli sing every song he knows in the car.  Sophia formulating an idea and then creating it out of paper, markers, and a pair of scissors.  Eli exclaiming, “Oh, my gosh!” to literally everything. Sophia climbing the counter like a monkey to grab herself a plate and cup.  How Eli gives the best hugs and still loves to snuggle and hold hands at bedtime.  Realizing Sophia is old enough for play dates on her own and doing math in her head.  Eli embracing his toddlerdom to the max – there is absolutely no reasoning with a two-year-old.  Waking up to both kids in the bed and wondering when and how they got there.  These are our moments, in our circle, that shape and define all that we seek and are grateful for.

So this Thanksgiving, I am thankful for my husband of 15 years.  I am thankful for my beautiful rainbow babies.  I am thankful for family near and far, who will be at our table and those who will be missed.  I am thankful for another year to celebrate our hodgepodge of moments and glimpses and in-betweens, and appreciate them all as sacred and life-giving, as purely as a seven-year-old would.

ninth x 2

After we had lost the twins, I remember having this inexplicable fear that if I started to smile, and heal, and "move on," that somehow I would be leaving them behind.  I learned over the years though that it's possible to move forward and still remember -- to talk about them, cry for them, celebrate and honor them.

I usually try to take off work this time of year to pause around the babies' birthdays.  Nine whole years.  Nine years of memories we've made, with them watching over us, still in my prayers every night.  The other day when both of our kids were seated with us at the kitchen table, I asked out loud, "What if we had had more kids?  There aren't enough chairs."  Sophia replied, "If Lily and Lucas were here, we'd all sit together in the dining room."  Her simple response made my heart smile.

So much has happened in 9 years.  The twins have kept us grounded, remembering to live consciously, not letting the moments pass us by, hugging our rainbow babies a little tighter.  Being truly grateful.  And sharing the love, by cooking a meal or making a porch drop, through a card or a late night phone call to check up on a friend.  This life was meant to be shared and appreciated and celebrated.

(Tonight when we sang happy birthday, Eli joined in, too.  He just learned how to enunciate "happy birthday" with all of the celebrations this week).

We miss you so much, Lucas.  Happy birthday, sweet baby boy.

ninth

Every August 27th for the past 9 years, the ache is there, more pronounced than usual.  I pray for all of our kids every day, and Lily, she was the first.  Our sweet girl.

My best friend, who always remembers, gave me flowers the other night and I could barely stop the tears.  She knows how hard this week always is for Anthony and me.  I told her I was pregnant before I told my parents.  She was there after my water broke and I was on strict bedrest.  She was there after we came home from the hospital without our twins.  So, she knows just what I need... for our children to be remembered.

I'm currently reading Out of the Clear Blue Sky by my favorite author, Kristan Higgins, who captures what it feels like to lose a child so beautifully:

"These things happen.  Oh, they happen all the time.  Everyone's life--especially every woman's life--is marked by something like this, it seems.  Miscarriage, infertility, breast or ovarian or uterine cancer.  It's so personal when our female parts fail us in some way.  So hard not to think that we--that I--had caused this, should've known, should've done something.

...Because she was born after twenty weeks' gestation, my daughter got a fetal death certificate, which meant she needed a name.  We could have left that part blank, but it seemed so cruel not to name her.  But we hadn't settled on one yet, and oh, the deep, aching pain of naming a child who was already gone.  The tragedy of it all.  The absolute, wrenching grief.

...And still, I thought of my poor little baby every day.  I'd held her there in the ambulance....I'd memorized her perfect face.  Every year on the first of December, the day I'd lost her, Brad would bring me flowers, and I'd cry a little (or a lot), remembering the fear and love and grief so pure it was like a scalpel, slicing my heart in half.

But you keep going.  The memory is there every day, but the days grow and multiply until it's years and years.  Her story was so brief, and after a while, there was nothing new to say.  She was branded on my heart, and she always would be.  It became my private loss, spoken of no more.  Brad had lost her, too, but he hadn't grown her inside him, felt every wriggle and kick; hadn't known my secret fear; hadn't seen all that blood or felt her tiny body slide out of me, even as I fought to keep her inside.

...I missed my girl in a way that still surprised me.  That after five years, ten years, twelve, I could still sob, alone in the downstairs bathroom, for my lost little girl.

...We would be best friends, my sweet girl and I....She would be smart and kind and helpful....Popcorn and movie nights, walks around the kettle ponds, kayaking, cooking, baking, laughing.  School events, her friends filling the house with the sound of their laughter...

My daughter would be my closest ally, and I would be hers...She'd lean her head against my shoulder and say, "You're my best friend, Mommy."

The longing...it never goes away.  My little girl.  How wonderful she would have been."

--Kristan Higgins, Out of the Clear Blue Sky

Yes, how wonderful our sweet Lily would have been.  We love you, baby girl.