legacies

"Legacies"

Thanksgiving 2021

To this day, sharing food is at the heart of every family gathering -- meal planning, preparation, dining together, chatting until it is time for more.  Growing up, dinner was always a meal we ate together, free of distractions, a time to recap our days before we split off in our respective directions to finish homework or wind down.  It's shared time we have with our own kids now before bath and bedtime routines, and when any of us miss it due an appointment or obligation, we feel it.

I remember many family dinners from my childhood, sometimes with special guests or with family who was visiting.  We also had a number of family members who lived with us over the years.  My cousin James (aka Ming-Ming), moved in with my family while he attended college in the U.S., and despite our school schedules and extracurriculars, dinner was still an important meal that we shared.  I think back to that time, about how he was a busy college student and eventually met his girlfriend (who became his wife), and yet he still made time for us.

The pattern continued even as we went off to college and met our partners and started our own families.  Dinners would not be so easy to coordinate anymore but we would meet and eat and celebrate milestones -- weddings, birthdays, anniversaries, graduations, holidays.  Thanksgiving was special because if my parents were hosting, chances were that my cousins would join us.  We shared many Thanksgivings together, all over each other in my mom's noisy, warm kitchen, kids running around (and sometimes, to my mom's dismay, with a puppy or cat in the mix).  There was the infamous ice cream cake shaped like a turkey.  There was the piano bench doubling as a seat when we started running out of chairs to extend the table into the living room.  There was Ichi's delicious sticky rice.  There were long discussions about where and when we'd be heading out for Black Friday sales.  There were family photos taken at the kitchen island, with the camera on a stool we'd use as a tripod.  There were early Christmas gifts in case we didn't see each other again before the new year.  There were seemingly endless hugs goodbye when it was time to leave.

Ming would always be in the middle of all of it... usually with a kid or two in his arms or making someone laugh.  He was a big kid at heart, with his trademark black graphic t-shirts, an appreciation for all things Disney, and boundless energy to entertain all of our littles.  We joked about how he was like our cool uncle Jesse, or a big brother who would pull us in for one of his bear hugs, or affectionately  our self-proclaimed "Uncle Grandpa" or "Big James" to our kids.

He will be so incredibly missed this year.

It's hard to remember the last time, because you don't ever know it is the last.  We hadn't gathered for Thanksgiving together in probably close to four years.  Last year, we had a meal swap in my sister's driveway with immediate family only, and the two years prior to that we had missed each other for one reason or another.  The last time we had seen Ming was when we had celebrated my dad's 70th and he had been talking about going overseas during the summer to visit his mom, my aunt, who was very ill and now they're both painfully absent.

I'd like to think they're together now, as we find our footing without them.

I think of Ming often.  I don't always have the words, but as with others we have lost along the way, I carry him, and them, in my heart.  It's what I tell our daughter, when she tries to reconcile what it means when someone is no longer with us: We remember them.  We love them.  We hold them in our hearts.  And we live, because there are no guarantees in this life.

This year, we didn't set out to break tradition... yet we felt spurred by that sense of no longer waiting.  We had to work around Sophia's school schedule for the first time, and she happened to have a week-long fall break.  It suddenly felt like the right time.  We had been talking about heading to Florida to spend it with extended family we don't get time with often, and had already missed what had been becoming an annual trip for the prior two years due to a newborn/cancer treatments/pandemic (in no particular order).  Then Nan decided to join us, and when we made it to our destination, we were surprised by my mother-in-law, so needless to say, have been cherishing our time together.

Time has felt more important than ever.  We're with family in a different way.  This Thanksgiving, I'm thankful for road trips.  I'm thankful for surprises.  I'm thankful for visitors on the dock in the mornings.  I'm thankful for breakfasts we cook together.  I'm thankful for sunshine and amazing sunsets.  I'm thankful for outside dining by the water.  I'm thankful for walks down the street with the kids and car rides with four generations.  I'm thankful for silly jokes by Siri.  I'm thankful for mystery trips.  I'm thankful for late night baking and staying up past bedtimes.  I'm thankful for family dinners.  I'm thankful every day that I'm given time to be present and here, because I have that chance, and I'm taking it.

As we gather this year in our noisy kitchens and around extended tables and the food that brings us together, we say a prayer for those we carry with us and the legacies that are living on.

self-care is health care

Two years ago on Halloween, I had my first (unscheduled) mammogram. I had found a lump about a week earlier and my doctor referred me for an ultrasound which turned into a 4-hour appointment... which turned into "highly suspicious for malignancy." Stunned and a little incredulous, I reached out to a friend who told me to go trick or treating with my daughter, so I got myself together and did just that.

A biopsy followed. Two days later, ahead of my read appointment, I was called into the office to receive my results. In that moment, I knew something was wrong. I was numb when I heard the diagnosis -- ductal invasive carcinoma. I was scheduled with a breast surgeon the next day. And I was 18 weeks pregnant.

My oncologist and I discussed treatment options, what was safe for the baby, and timing. I was already in the high-risk category with the pregnancy, so was feeling overwhelmed and anxious, and utterly powerless. Although I was told to take care of myself, the thought of actually pausing for a moment to do that seemed implausible... I was carrying life inside of me, and it seemed so at odds with the rest of what my body was doing.

For the first time in a long time, I had to refocus on my health, and I had to do it with the same vigor I usually reserved for my family and my career. When I was told not to worry about a thing at work, I placed trust in those words so my energy could go where it was needed.

Time, suddenly, felt more important. There were appointments and schedules as my providers mapped out a plan. There was port placement, surgery, and 2 rounds of chemo, a scheduled induction so I could resume treatments 5 days postpartum. There was a beautiful, healthy baby boy. There was a pandemic. There were treatments alone, with a newborn at home. Then came radiation, and in the whirlwind of 6 months, I had completed active treatments.

Now there was time to take a breath.

The lesson? When I think back to that time, aside from the enormity of it all, I go back to 3 things:

1) Self-care is essential.

2) Refocus, reframe, reprioritize.  

3) When support is offered, take it.

I find myself going back to these things when I'm feeling a little stuck or overwhelmed. I couldn't be at my best, at home or at work, without taking care of me. So take the time to take care of yourself today; give yourself the opportunity to be better.

first son

The evening before Lily's birthday, my in-laws surprised us with an engraved bench to install by the memorial.  It's been 8 years, but they never forget; they leave flowers at the twins' graves every August and have helped keep the area clear of weeds.

I find myself struggling during this time of year and it's not always readily apparent what is going on beneath the surface, even to me.  I'll catch myself feeling more easily irritable and less patient, and have to give myself pep talks before being around others.  At times, the grief can be crushing... and other times, I just want to sit and remember, and cry for my babies.

Every year that passes is another year without them, and time is elusive.

Lucas, you would have been 8 years old today.  Happy birthday, my first little man!  Oh, how I wish that you were here.  I carried your fighting spirit with me especially in this last year, and know you were cheering for me to make it through.  Your absence has taught me to be ever present, to be here with our rainbow babies, to tell them about you and Lily, to remind them of your place in our lives.  I think that you would share that same light I see in their eyes and in their smiles.  

Keep reminding us how incredibly fragile and precious this life is.  We'll sing to you, we'll pray for you, and one day we will see you and your sister again.  We love you, dear son.

big sister

TRIGGER WARNING: Image from video is of our baby born at 21 weeks who did not survive.

Around Christmas time last year, Sophia started asking more questions about Lily and Lucas. She has long understood that she has an older sister and brother, who we have talked about her whole life, and who we sing to on their birthdays. Over the years, we've seen her piece together the story of their arrivals before she was born, acknowledging that her Mommy and Daddy had lives together separate from when she had come into the picture (though still hard for her to admit), and grasping that they were real, live babies, if only for a short while. Feeling that she was ready, we decided to show her their baby books.

She had the most heartfelt, honest reaction.

Afterwards, we had a conversation about how we didn't get to see them grow up, and she said, "That's sad. They were born before me. Do you miss them?"

Every day, Sophia, every day.

It has been 8 years since I had Lily, and I still cry on her birthday. Our journey to parenthood was an extremely difficult one. I reason with myself that if we hadn't had and lost our twins, then we probably wouldn't have had our two rainbow babies, absolute miracles, in every sense. The grief of having to bury our daughter and son, though, doesn't really go away. There are no words for how the constant heartache feels. I once described it as feeling weighed down by the pressure on my chest, but on the other hand, there's an emptiness there, too.

One of my best friends has a daughter who is Lily's age. I remember how excited we were to be pregnant at the same time, thinking how cool it was that our kids would be close. I have a special place in my heart for her daughter, reminded of what Lily and Lucas would be doing today -- subjects they might be inquiring about, activities they may have participated in, and how amazing they would be as older siblings. There is no getting around the wondering about where they would be now, and how their presence has continued to shape our lives.

Happy birthday to my first baby, my pure and sweet Lily girl. I say a prayer for you and your brother every night, thanking God for his true and loving embrace, watching you as I know you are watching over us. I miss you so, so much.

pro...gression

One year ago to the day, I started adjuvant cancer therapy consisting of an aromatase inhibitor in the form of a pill + ovarian suppression in the form of a monthly injection in the stomach. The AI mercilessly gives me joint pain and the injection causes hot flashes; essentially i’m in a clinically induced menopause so get to feel the effects of it.

Last year, I was anxious and overwhelmed, sick of needles (especially after enduring several rounds of IVF) and feeling like there was no end to treatment in sight. This year, I breeze in and out of my infusion appointments, asking for the glove of ice and freezy spray, no longer having to brace myself for the shot. Though not fun, the injections are tolerable (even more so when the nurse doesn’t remind me of how big the needle is or how they don’t particularly like administering the shot), while the side effects remain.. well, pretty unforgiving.

I won’t know until my next hem/onc appointment how much longer I’ll be on this regimen, but I try to no longer associate it with a timeframe or end goal. I’ve managed this first year, as hard as it was. My hair has grown to be the same length that my wig had been. I've made changes to my diet and add activity when I can. I feel like I’ve achieved something, quietly, without the fanfare or notoriety of active treatment. Small steps, and progress.

checking in

Compression gloves.  An electric jar opener.  Shampoo dispensers.  They may appear to be small things, but to me, they're everything.  (Thanks hubby!).

During a fit of frustration this weekend, I told my husband that I was tired.  I was tired of answering questions about my health status with people who couldn't understand.  And while I had said those words from an unhappy place at the time, there was some truth to them.  It's really, really difficult explaining what it feels like to be forced into a menopausal state, to experience hot flashes and joint pain over a decade earlier than expected, to realize that everyday tasks like squeezing toothpaste out of a tube or shampoo from a bottle could hurt.  To become exasperated at myself when my fingers would fail me, that I would drop things or take 15 minutes to tie a knot or struggle with high chair and carseat harnesses (that were impossible to begin with!) or find myself ugly crying in the kitchen when I could no longer open a jar.  It's hard to verbalize that yes, I survived -- I finished chemo, then radiation, in a pandemic, no less -- but this survivorship thing?  Boy, it's hard too, in a whole other way.  On the outside, I look fine.  My hair is growing back (although it's in this weird stage that I don't know what to do with), and we've been gradually re-entering the world and having somewhat of a social life.  Technically, which is what I tell everyone when asked, I'm being managed by medication (an aromatase inhibitor) plus monthly injections at the infusion center (ovarian suppression) as adjuvant therapy, since I'm premenopausal.  I read the literature and studied the side effects when my oncologist had first suggested it.  He warned me about the joint pain and hot flashes, but I was still undergoing chemo at the time so honestly thought, "How could it be worse than it is now?"

I don't know if it's worse.  I remember the bone pain that I had experienced with chemo, barely able to cradle my newborn, trying not to move at all out of fear of dropping him.  Some days, I would camp out on the couch and just pray for the constant, gnawing pain to subside.  Nowadays, it isn't the same type of pain -- it's consistent, but not unbearable -- and it's more like stiffness in my joints until I start moving.  So in other words, it's just annoying enough but not something I would take OTC meds for.  It's tolerable.  The difference here, though, is that there truly is no relief in sight.  And that is the hardest part.  I feel like now, more than ever, I perhaps understand maybe an ounce of what it's like for anyone dealing with a chronic illness.

So I started to make some changes.  A few months ago, I transitioned to more plant-based eating, switching two out of my three meals to be without meat.  I walk when I can during lunch.  The walking has helped my knees and hips, but I still wake up every morning with my fingers and hands in pain.  Still manageable, but it sucks.  It takes reminding myself, every day, that "I wish things could go back to the way before" is no longer an option.  It's an understanding that from the day of my diagnosis, my life changed.  Period.

In the end, I do want to talk about it.  I do want people to ask, check in.  I recognize it must be hard to understand, as with most anything else when you haven't experienced it firsthand, what it's like to feel crappy and push through it every single day.  Is there a moral to this story?  Be thankful for your health.  Take care of your body.  And thank God every day for husbands like mine, who sees me struggling and will do anything he can think of to help, who truly listens and supports me through all of the good AND all of the bad, and who never, ever lets me down.

And also?  It's okay to not be okay.  Check in with yourself too, and allow yourself some grace.

the little things

I’ve been thinking a lot about this time last year, the brief lull between chemo and radiation. It isn’t usually the “big picture” stuff that sticks with you.. It’s random details and facts pieced together a little haphazardly, somewhat like a dream you’re just waking up from. The one where you ask, “Did that really happen?” Yes, yes, it did.

Last year at this time i was dried out from chemo. My eyelashes and eyebrows seemed to all fall out at once. I was still getting used to venturing out in a wig, or even venturing out at all, with a 3-month-old baby at home in the middle of a raging pandemic. When I had seen those sticky notes in the dressing room, I had really needed them. I had barely been holding it together and maybe had shed a few tears. And then I kept going.

A couple of days ago, I was working on something with a coworker, the director of infusion services at the campus where I was treated. After our meeting, I asked her to hang on a few minutes longer so I could properly thank her and her team again for taking such good care of me during the most difficult time in my life and for seeing me through. Even at a year later, I continue to learn from my experience through the eyes of a survivor, and it’s still about the little things. All of those little things getting me through the BIGGEST thing.

So I’ll say it again: Look for the little things. Sometimes they’re everything.

At my CT simulation for radiation last year, 6/24/2020.

year in review

A year ago, my family and friends surprised me with a drive-by parade as I was finishing up chemo (the next day). It was truly a milestone, one of the most important in my life, and serves as a reminder, as milestones do, of what I'm capable of.

A year later, I wake up with aches every morning and my hands and fingers will physically hurt until I start moving them... a fun side effect of my meds. The joint pain continues like it had with chemo, but I push through like I always have.

I know now that it was naive to think that after active treatment, everything would return to "normal."  It was as if that part of my brain which knew it all along and wasn't ready to acknowledge it finally showed itself. I was a few months into taking my maintenance meds when I realized that I wouldn't ever feel the way that I used to, and needed to find a way to accept this part of my survivorship journey. It has truly been a lesson in managing both my physical and mental health. Now a year later, I know that I am strong in body and mind.

Every day is a blessing. I survive, and I live.

the mammogram

Ah, the diagnostic mammogram.  How can this lovely experience be described?  Think of a machine with clear, flat plates.  Then think of being positioned just right to be squished, nice and snug, between those plates, cranking and leaning and hugging and lots of pressure, and then being told not to breathe.

I was anxious about this one.  My first experience had been a nightmare – not the test itself but what had come later.  It was Halloween 2019.  After finding a lump in my left breast and checked by my OB, I was referred to Breast Health Services for an ultrasound only, being that I was almost 16 weeks pregnant at the time.  So a week later, I had had that ultrasound and then was told a mammogram would need to be ordered after all, so had to wait for my doctor to clear it.  What had started as a one-hour appointment eventually stretched to 4, as I proceeded with my first mammogram (ever) and then brought in subsequent times for more and more pictures.  The techs eventually fed me when they realized I hadn't had lunch since I naively thought I'd make it back to the office that afternoon.  My nerves were through the roof as I waited and waited, still in my gown, for the results to be read.  I knew something was amiss as the appointment stretched endlessly, even before I was brought back into the room to finally hear it with my own ears.

Afterwards, I had walked to the car in a daze.  I called my husband and broke down crying.  He told me to stay put so that he could pick me up, but realizing the late time, I had told him that I felt okay to drive home.  I texted my friend who had just been through this the year before, collected myself and took a breath, called the office, and then drove to my daughter's school parade.  Then I went trick-or-treating with her and pushed the nightmare aside for one night.

So yes, after the year I've had, I was anxious about this one.  It was the first mammogram after surgery and treatment, my first as a survivor.

This time, I was told to plan for up to 2 hours.  I was ready for the wait.  It wasn't painless, but it was quick, and I was grateful the results were read and given then and there.  When my name was called and, "It's good news!" followed, only then did my shoulders relax.  Thank. God.

As I walked to the car, it was frigid and windy, but the sun was shining.  I took a moment to collect myself.  I texted my husband and that same friend, and we shared a celebratory meme together, much like how we did after she had gone for hers a couple of months ago.

To all the other pink warriors out there – I feel you.  I'm with you.  I am you.