One month

We got the official diagnosis in September 2020, with an initial prognosis that we’d be lucky to have a year with her.

Here we are, almost two years later. I’m so grateful for the “extra” time we got, but it has been a rollercoaster. A nightmare. We’re now faced with “less than a month” left, but she’s surpassed expectations before so only time will tell what that actually means for us.

You’d think that after more than a year of grappling with this, that I’d be ready — as ready as one can be — but I’m not. I still can’t talk about how I’m doing (or many things, for that matter) without breaking down.

I am still physically, mentally, emotionally as much a wreck as i was September 2020. Maybe more so, because the cumulative weight of the past two years has been crushing. I’ve helped my mom make countless medical decisions. Medical decisions that I painstakingly relive all the time, wondering which ones I could have made differently to have avoided, or at least delayed, some of her immense pain and suffering.

It’s laughable and sad to notice the mental gymnastics my mind will go through, grasping at any sort of plausible denial it can get its hands on, even now when faced with the undeniable and inevitable. This morning I was looking into how much oxycodone we can give her without accidentally overdosing her (though, honestly that might be a better way to go), and I zeroed in on these possible side effects:

drowsiness
trouble sleeping
lack or loss of strength
confusion
body aches and pain
muscle stiffness, tension, tightness, pain, or weakness
weight loss

My heart leapt. Maybe my mom isn’t dying! She’s just taking too much of her painkiller! Then reason quickly enters, disrupting this fleeting (and incredibly stupid) moment of hope.

I’m stepping away from work, so I can focus on taking care of and spending time with my mom.

I’m also possibly going to unleash a lot of messy, raw, half-formed ramblings onto my blog because after 21 months of swallowing them, sitting with them, I might burst. I have countless disorganized journal entries — written in moments of insomnia, grief, anxiety, rage, guilt, or stress — and written out of necessity when I desperately needed to get things out of my godforsaken head.

Cancer

It’s the day before thanksgiving, 3 weeks from my due date, and I’m sitting with my mom at UCSF as she does her first round of chemo. There’s currently a strict no-visitor policy thanks to Covid, but the staff is letting me stay with her. Maybe they’re being kind because of what an absolutely pitiful pair we make: the 73 year old woman who doesn’t speak any English, accompanied by her very-pregnant daughter. Whatever the reason, I’m grateful. I’d hate for my mom to be alone as she gets poked and prodded, and receives this strange cocktail of medication for 6 hours.

There are so many things to keep an eye out for and contradictions to navigate. She’ll be fatigued for a few days, but if she’s too fatigued for too many days, that’s worrisome. She’s 73 with an aggressive cancer, and is still recovering from a very invasive (and sadly unsuccessful) surgery she had just a month ago…what is too fatigued? Flu-like symptoms are expected, but can also be very troubling, depending on when they manifest. Ok…

I woke up at 5am. Well, technically I woke up at 1am, 2am, and, then finally got out of bed at 5am to get ready for the day and drive to the city. I’ve packed her snacks, a blanket, hot tea, hand sanitizer, a notebook and pen in case she has thoughts or questions she wants to remember, an iPad loaded with Chinese movies, and headphones.

She has no appetite these days; what will she even want to eat? What will settle her stomach during her infusion? What will be most caloric and nutrient dense? What will keep in my bag for hours, and not smell, which would bother the staff and other patients? My mind spins endlessly over all of the details. There’s so little I can control these days, but I can make sure she has the right snacks.

I made yet another list last night in my notes app to keep some of today’s details sorted:

Leave my place at 6, leave parents’ at 7:30, labs at 8, chemo at 9.
My backpack: computer, chargers, water, hand sanitizer, airpods, snacks for me.
Mom’s bag: notebook, charged iPad, headphones, blanket, snacks, hand sanitizer, hot water/tea.
Show her how to use Netflix.
Remind her to wear comfy clothes and something short sleeved for IV.
Bring her medications in case they ask about them, her ID, her insurance card.
Figure out which parking garage is closest. Can she walk a few blocks?
Remind her what she should expect and what may be abnormal that she should report to a nurse right away, and say “translator” or “Chinese” or “daughter outside” if the nurse doesn’t realize she doesn’t speak English.
Get thank-you treats for staff.
Give dad printouts and my cheatsheet about what to expect and look out for, after chemo.
Go over Zoom again and have dad write it down, so they can attend appointments without me in case I can’t make it once the baby is here.
Teach dad how to take and send photos in case there are symptoms. Write this down too.
Pick up prescriptions and over the counter items for mom’s care.
Make sure they call me when they get their genetic testing kit so I can walk them through it.

And I came across thoughts I had spewed on my phone at 3am a few weeks ago:

i can’t sleep. i woke up feeling so desperately sad and hopeless.

cancer. a rare, aggressive cancer no less. i’m creating life, and losing the one that gave me mine.

cancer has robbed me of joy, the typical joy i’d experience as i settle into our first home, getting ready to have my first child. instead it’s been supplanted by overwhelming grief and stress.

i’m mourning all the things i’ll never get to do with her. mourning the relationship she and my son will never have.

devastated by the terrible timing of this. what is this stress doing to the baby? how will i be able to care for my mom and take care of a newborn? what does my mom want to do with her all too little remaining time? she doesn’t have many options given her frailty and covid.

my and my baby’s care as well as preparation for the baby has taken a backseat to my mom’s care, and i’m 100% fine with that. it’s the obvious choice. but i know i’ll regret and mourn what i lost there too, in the future. but one sadness at a time is all i can bear right now.

the baby’s room is bleak. we didn’t get to paint the walls or decorate. i didn’t take bump-progression photos, and we definitely don’t have any photos of me glowing with joy with my husband. i haven’t read all the books i wanted to, or learned about everything my doctors told me to.

instead, i’m learning new words in chinese: cancer. tumor. pancreas. bile duct. scans. jaundice. surgery. staples. radiation. chemotherapy. genetic. infection. labs. transfusion. clinical trial. side effects.

i’m learning about their terrifying, sad beliefs about the afterlife.

i’m spending countless hours driving to and from the city, and at doctor’s offices and hospitals, trying to buy her a bit more time and comfort.

WORKHARD.doc

Over the weekend, I was going through an external hard drive from my college days to clean things out and back up old photos. I came across WORKHARD.doc, last modified on May 11, 2006. It said:

Never stop working hard. Mom and dad have worked 1000x harder than you, EVERY DAY of their lives to get you to where you are today. Don’t disappoint them. Don’t let their hard work go to waste. You’re young and have so much opportunity (because of them) and you MUST take advantage of it, to secure your future and theirs. If you want to help them like they’ve helped you, WORK HARD.

I also found this (super low res) image that is probably related. 😂

Adventures in Tech Support

In 2014, I got my parents their first devices; they were now equipped with two shiny new iPad Airs, ready to experience all the wonders that technology had to offer!

It’s a great big world out there, so we started small. First, I showed them how to navigate to the shared photo album so that they could view photos and videos of Lily (my niece, their granddaughter) at any time. Three years later, Dad discovered on his own that he could post comments. 😆

It’s been slow going, but over the past 6 years we’ve covered:

YouTube. “This isn’t your video? But you know this person?”

FaceTime. Yay, video chats with a (then) toddler who has no interest in video chats!

Google Maps. “Wow, that’s your grandmother’s building in China!”

Google Translate and iTranslate. No more confusing and inelegant linguistic gymnastics to try to explain a word or concept in another language. (Huge shoutout to iTranslate for supporting Cantonese for years!)

eBay. This was my least favorite. Dad was lovingly and generously trying to get nice designer gifts for family and friends back home in China, but at slightly discounted prices. Little did he know, people lie online! I cannot count the number of counterfeit items I received and had to return during his eBay phase.

YouTube comments. “Did you know you can view and leave comments on Youtube? People can be wild!” Oh dear. …Hey Siri, how do you say “Trolls” in Chinese?

Charles Schwab. Dad has always enjoyed learning about companies and investing a little where possible. Until a few months ago, he would call Schwab’s automated phone line to make the occasional trade. This was inefficient and costing him money, so I got him set up on the app. Initially, I was hesitant given his inexperience with technology (e.g., “I meant to buy 10 shares, not 100!”), but so far so good.

FaceTime again. This time, Mom wanted to know how to initiate calls. After walking her through it several times one afternoon, I suggested writing down the steps so she could refer back to it later. “Nah, I’ve got it!” The next day, I received a text message from her. Plot twist: she doesn’t know how to text! The text simply contained my phone number — it was clear that this was a failed attempt to FaceTime, and she had not gotten it.

So many concepts like logging in, usernames, passwords, copying, pasting, and text fields. The first time Dad got signed out of an app, I tried to explain how he could sign back in over the phone, thinking it’d be pretty straightforward… nope. Take a moment to consider how you’d explain this to someone who has never signed in to anything, ever. Concepts aside, for us, it involved going over:

What/where/how to press.
Tapping vs. pressing the screen.
Characters (like *, ^, @, ) that I don’t know how to say in Chinese.
Text fields. Take the screen below as an example; Dad had no idea that he could (and was supposed to) enter information into those white areas on the screen.

Icons. When trying to guide Dad to a specific place on an app, I asked him to click on the thing on the bottom of the screen that looks like a bell, or the one that looks like a person. “I don’t have those. I have a hat, and ummm…” We’re all accustomed to icons that look like these and what they represent, but Dad with his new-to-technology eyes, was stumped:

Wifi. For years, their internet would go down randomly and for extended periods of time. “The internet and phone weren’t working all last week; it must be because of the weather or because there were too many other people online.“

The worst part: I had no idea until way after the fact — after they’d been without internet and phone for days or even weeks — because they didn’t want to “bother” me. I installed a mesh network a few months ago, and I’m so grateful that I can use an app to confirm that their wifi is working and speedy. (Thank you so much Eero!).

Needless to say, it’s been a slow, bumpy journey, but now some basic tech is part of their day to day lives, and I’m so grateful. They’re a little more connected and autonomous, and have a slightly better understanding of the very significant and impactful advancements we’ve seen so far in their lifetime.

…What should I show them next?

Automattic GM 2018

I just realized that I didn’t do a photo summary of the 2018 Automattic GM. Since I really like these people and our time together, and Automattic is why I have and try to maintain this site, here it is! Better late than never, right?

This one was extra special because I came straight out of my sabbatical (3 months off of work). It was great to have a week to catch up IRL, recover from vacation-brain, and kick things back into high gear.

These photos are a random, disjointed glimpse of my GM, minus the work stuff. They’re imperfect, but they capture fun moments from a special week. And yes, I tend to get sentimental and excited and make people take selfies. :)

Not pictured: plenty of work and meetings, great speakers (like Cheryl Strayed!), and people I care lots about, but did not have a chance to coerce into taking photos.

GDPaRty complete with cookies!

When I discovered memoji…

and created my own!

Before…

And after he said it’ll be sad that we’ll never see each other again (since we thought this was the last GM)

I’ll never tire of faceswaps.

The happiest.

Trying to figure out how to play my request. :)

Tarot card reading

Cuties

Catching rays in between meetings.

I could not stop laughing at this pitiful dinner plate

Silent disco!

Pizzaaaaaaaaaaaa

White party!

Legal team!

Greeted with cans of budlight and not mad about it

Twinsies

Late night McDonald’s and cupcakes

Peppa Pig Nailed It

This video hit so close to home. Sobbing violently before a shower and coffee is not how I expected to start my day.

The generational gap. The cultural (and sometimes lingual) disconnect. The disparate quality of life and lifestyle. The technological rift. The sacrifice. The heartbreak and unrelenting love.

Travel

Travel changes you. As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life – and travel – leaves marks on you. Most of the time, those marks – on your body or on your heart – are beautiful. Often, though, they hurt.

A Visit to The Burn Center

I burned myself pretty badly two weeks ago, and it wasn’t healing as expected, thanks to my stupid, sensitive body. I was reacting to everything: the antibiotic ointments, the bandaid adhesive, the nonstick pad, etc.

At my husband’s insistence, I saw a doctor. And at my doctor’s insistence, I saw a wound care specialist.

I was expecting an uneventful visit to the Bothin Burn Center this morning, but was surprised by a flood of thoughts and emotions as I waited for the staff to process me as a new patient:

What constant stress the staff must be under.
These poor folks in the waiting room, who had real issues that needed attention.
How absurd it was for me to take up the doctor’s time, which could be used for treating serious burn victims.
How stupid it was of me to be so careless, causing me to waste all this time and money.
And worst of all: What if my carelessness had caused me to burn someone else… or a child? The thought alone brought immediate tears to my eyes, and the concern was later exacerbated when I saw a toddler, cautiously but curiously exploring the hallway with her parents, wearing a compression garment (to apply pressure over healing burns and grafts) around her teeny, adorable face.

But as usual, the bad thoughts brought good ones — details that I can never take for granted:

How lucky that my loved ones and I are in reasonably good health.
How fortunate I am to have the healthcare and resources to take care of any issues that do arise.

Mindfulness

The Calm app sent me this reminder this morning. With all that’s going on in the world right now, I appreciated it.

It also reminded me of a principle that my dad reiterated to me throughout my childhood and young adulthood. It won’t translate as well as I’d like it, but the basic concept was that, especially as a girl/woman (🙄) I should be calm, steady, grounded, and ocean deep. Take a small bowl of water, for example. Any minor disruption (a shake, an object falling in, etc.) can be catastrophic and immediately empty the bowl. On the other hand, it takes much more to cause any noticeable disruption to a large, deep ocean; it can withstand great storms and still return to a state of calm.

Despite its sexist undertones, the lesson was a good one in mindfulness, and one that I’m still trying to practice.

Automattic GM 2017

After 10 days away, I’m home. I’m excited to be with my people here and get back to my routine, but I’m also a little melancholy knowing that I won’t see my coworkers for an entire year, if ever again. (I’ve never been good at goodbyes or finalities.)

I admit that that sounds dark, but it actually makes me very appreciative for the time I do get to spend with them, which is why I do everything I can to make the most of our week together.

Here’s a random, disjointed glimpse of my GM, minus most of the work stuff. Because, well — it’s work. It’s kind of weird to take photos of people in the middle of a meeting or class… though there’s a few of those too. 😀

Gorgeous sights. Face swaps. Surprise doggos. Improvised lobby dance parties. Late-night eats. Catching up 1:1. Prom. Immature jokes. Honest conversations. Peace signs. Homeroom. Twinning. Champagne. Domains. Nodules. Surprise connections.

As someone remarked this week, “You’re really good at burning the candle at both ends.”