What it's like. What is it like living in the in between? The beginning of the in between was so stark but the ending seemed so murky. What would end it? Death? We all die eventually. A diagnosis? But a diagnosis is just the beginning of another in between.
Monday evening. Carla and Daniel opened the front door. Nelly was standing behind the kitchen counter, still. That stood out to Carla. Her mother was always moving in the kitchen; stirring the soup, chopping the vegetables, cleaning. Busy. Carla would have to stop her for a hug. But today Nelly stopped what she was doing when the front door opened. She was wearing a white sweater.
"Guys, I'm not feeling good. I can't breathe."
It was true, almost. She was breathing, but struggling. It sounded like someone had punched her in the gut.
"I called the nurse and they told me to come in and get a blood test and X-ray."
Daniel and Carla immediately thought, "Stroke." But that was ruled out by them, by the nurse.
And the in-between began. So delicately, a slight slope towards what you were not planning. The evidence of the slip was small; a nagging itch, a pound of panic before you got a hold of your senses. Further into the in-between Carla would look back at this moment in the kitchen and pin it in her memory as the start, but she still didn't know what it was the start of. She imagined her life now as a function whose direction she didn't know. As she had been trained, she tried to find a model for this overly-complicated situation. Was their life function one whose slope would soon shoot off into the abyss, with no minimum in sight? Or where they on a gentler decline, slowly but monotonically decreasing? Of course the day to day was too complicated to try and generalize. Full of small swells of hope and drops into despair. Carla's first day in this new school of oscillation started Tuesday.
Nelly spent her day in the ER on Tuesday, by herself because they could not risk baby Charlotte being in the germ covered hospital and the men were off at work. "They took out 1.5 liters of fluid from my lung. It was clear, which was a good sign," her mom texted. A bubble rose in Carla's chest which had been clenched tight all day.
Another text. "I need to wait a couple of hours until they discharge me." Neutral. No new information there.
Carla went to pick her up with Charlotte in the back. The ride to the hospital was strange. "I'm going to pick up my mom from the hospital who could be very sick or not. We don't know. This could be the first of many rides or not. And I need to find a playground for Charlotte." The last fact was definite, so Carla focused on it. Carla had left early to beat the afternoon rush so she had a dead half hour with baby girl.
Nelly called when she was done. The hike back to the car from the park took longer than Carla remembered, so Nelly stood out in the cold for a few more minutes than she had to waiting for Carla. Carla felt bad; her mother hated the cold. But Carla also felt like this was a small inconvenience; like they couldn't worry about these things now. She had to pull into the round-about at a funny angle because of all the cars parked around, so the nose of the car was pointed directly at Nelly. Like a car accident put on pause. Carla honked. Once, twice. People everywhere looked at her. Finally she phoned Nelly. "Oh! I didn't see you." Carla was so sad, the bubble gone. This felt very ominous.
When they passed IKEA Nelly cried. The clear fluid became a bad sign. It meant no infection. Which is good if you think you have infection. Bad if you don't think you have an infection. Then why is it there? The fluid seemed so sinuous now, creeping into her mother's lung like a stupidly perfectly crystal clear poison. Carla gave her mother a quick glance, and hand squeeze.
"Mom, we don't know yet. I know, it's scary." Tears slipped down Carla's face. And she dropped further into despair. Her mother did not waste fear. If she was scared, then their world was changing.
Feb 9, 2019
Breast cancer in her lungs. "This is what it's like," Carla thinks, "to have a mom who is dying."
What is it like?
It's awful not knowing how bad, how long. Two more weeks of waiting until all the tests are back and have been analyzed. Carla feels a high-pitched electrical sound turn on in her life. You know the sound, when the radio is first turned on but isn't quite playing music. Not white noise, but a pressure, a silent sound that pushes against your eardrums and makes you want to shut the radio off. Carla feels like she hears that sound all the time now and everything else around her is muted because of it. The sound of cancer, a silent, pressurized scream.
How are we all doing. How is everyone feeling. Carla wonders why she isn't crying every second, why she isn't spending all her time cherishing every memory and mourning the loss of futures ones. Not yet, she tells herself. I can't do that yet. Time yawned in front of her. Two weeks of waiting appeared as a chasm they would never cross. She couldn't give herself up to her weeping passions just yet.
The night she found out she sent her bat signal. It was urgent, everyone needed to know. Now three days later she wonders why. They had no details about the cancer, nothing to satisfy people's craving for answers. She wasn't even in Berkeley. As a recipient of the email, she wouldn't know what to do with it except express condolences. But she told her whole world. Lori, Alicia, and Laura, Ali and Sarah, office mates, the Primary presidency, her two bosses.
Carla was always a nesting creature. Whenever she went on a trip she unpacked her bag first thing. Carefully laid out her clothes in the dresser, set her shoes in the closet. Like a dog circling and circling before she laid to sleep, Carla circled and circled her new location to feel settled. Here she did the same. The rapid fire emails and texts with the same message to so many people,
"We found out today that my mom has breast cancer and it has spread to her lungs. At this point the cancer isn't curable, just treatable which means the doctors try to prolong her life as much as possible while still giving her the quality of living she desires. We don't know how far it's spread or how aggressive it is, so she could have a few months to many years to live. We'll find out more when she meets with the oncologist later this week or next week.
Everything is very up in the air about what life will look like for us for the next few months, but I will keep you updated. I'm planning to fly back to Berkeley soon to try and be there for the oncologist appointment. Depending on the treatment plan I may or may not go back to Seattle.
My mom is feeling very good physically; she has been watching Charlotte every day and doing her usual routine. She is incredibly grateful for the life she has had so far and the piece that she has left to live. We are all slowing down and taking things one day at a time."
With this message sent again and again, Carla was running the same grooves in her brain that solidified this new fact. Her mom has cancer. Her mom is dying. Carla was turning this every which way, slowly peeling one finger at a time from her eyes as she watched this frightening scene unfold before her. In the coming days she read these messages anytime her mind wandered. Running these sad streets until they reverberated in her bones, until she recognized this new gloomy neighborhood and its forlorn landmarks.
Feb 15, 2019
Yesterday I thought my mom would rot from the inside out before anyone at Kaiser told us anything. Today I'm feeling so much better.
I assumed a fighting stance and sent out a blitz of phone calls yesterday. Guns and ships was playing in my mind as I wielded my phone weapon. "I will organize you information, rise above my station SIR!"
We have located her Utah medical records and had them sent over to Kaiser. We've talked to her case manager three times since yesterday. We got the results from her bone scan and CT scan. All clear except for her lungs which we already knew. The worst has not come, not yet, and for that we shed tears of joy. I laugh when I hear myself say, "Cancer has ONLY spread to her lungs." But that is the best news I have heard for awhile.
Yesterday, before this good news and after my exhausting attack, I sobbed in my pillow thinking of everything that would be lost when my mom is gone. I read unaccustomed earth, bad idea, first story was about a Bengali woman raising a two year old son after her mom died. Her mom cooked, cleaned, was warm, filled the room with her presence. So I cried and cried and cried. Strangely I read a whole other short story before the tears hit. I surprised myself by how passive I was during the first story which was unfolding my future life.
The things I'm the most sad/scared about
1) Her cooking. I know this sounds stupid. But I suck so much at our and my mom is so good at it and it's how she tells us she loves us. And it's how she takes care of us. And it makes me feel Peruvian. It symbolizes the kin keeping my mom does for us. So without it I would feel pretty unmoored.
2) My Dad being alone.
Strange things. I haven't really missed anyone while in Seattle. I've been going crazy because I feel out of the information loop, but I haven't ached to see anyone except my mom a little. I feel like a robot. I've enjoyed my mornings sleeping in, coming home to a clean apartment, slipping into bed when it strikes my fancy. My life in Berkeley feels like too much. Too many responsibilities, too many people trying to arrange things. And every time I see Daniel we just talk about crap we have to do. I feel like I hear static all the time when I'm in Berkeley. I need to learn how to take a step back, to turn off my brain. More walks alone.
I'm on my way to Berkeley right now.
Feb 21, 2019
"How are you liking Amazon?"
"I like it a lot. It's really fun."
"And how you working things out with Charlotte?"
Carla catches her breath. Charlotte and her mom were supposed to come to Seattle last week. The fact that, instead, Carla was in Berkeley was a sign that everything was amiss. Laura didn't know that, but the incongruity felt so glaring to Carla she could no longer gloss over it. And Carla felt Laura's presence pulling the words out of her, because although Laura didn't know, Laura knew. She knew what it was like to have a sick mom, a dead mom. Her mom had passed away three years ago: brain tumor.
"I don't know if you've heard, but my mom was diagnosed with met-"
Carla catches her breath again. She can feel the pressure in her nose, eyes, and throat of tears trying to push themselves out. For a split second she considers how surprised she is that she is about to cry. She has told so many people without shedding a tear. But she puts aside her surprise and stumbles on.
"with metastatic breast cancer last week."
Laura gasps. Tears immediately well in her eyes. She shifts Nadia to her hip and extends her arm while saying,
"Carla, I'm so so sorry. I'm so sorry."
Carla has buried her head in Laura's shoulder and was now letting out small hiccups of weeping.
Carla felt like in this moment she was perfectly understood and perfectly expressed. What a relief to tell someone who knew. Who knew that it was terrifying. Who knew you've already counted all the ways you'll miss your mom. Who knew your anxiety over grieving too soon because you don't know a lot yet. Who knew it was confusing to still be happy sometimes. Who knew that when you told people you were almost emotionless while other times you wept.
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