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, bothering 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 after I have my baby.
- 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.