Cake

March 26, 2022

My parents came to town to visit yesterday. I asked them to come after my surgery/biopsy so that they could enjoy the beginning of Spring here, but also in case I was dealing with any bad news.

I was able to put on a pretty happy face when we went to eat dinner with them at the Airport Marriott they were staying at. I did my makeup for the first time since the surgery and wore my long hair down, styled in waves, covering the shaved spot and big scar on the back of my head. 

There was hardly any parking when we arrived, so we parked in the back of the hotel. I didn't have the energy to walk all the way to the front, so I called my dad and asked him to come find us and open the door. He wasn't finding us, but I finally saw the sign by the door that said "Push button for assistance"  and the door just opened.

The food took a while to come, so we talked and laughed quite a bit. Matt enjoyed hearing funny stories about me as a child. We never seem to run out of things to talk about. By the time the waitress finally dropped off our check, my body, mind, and head were extremely tired. My dad was buying, so Matt took me home.

The next morning, we picked up my parents and brought them to our house for lunch. They had taken a walk that morning and enjoyed the blossom show that the Seattle area offers this time of year. Matt made my dad a turkey sandwich, and I made my mom an egg salad with celery, avocado, and cheese. She said she loved it. Whenever we go to Utah, she makes yummy vegetarian food and makes sure I'm generously fed, so it was nice to finally return the favor.

There's a popular cake shop in Georgetown Matt loves called Deep Sea Sugar and Salt. It looks like an older house, green, with a bay window on the second floor. "Cake Shop" is written in plain letters underneath. There is usually a line out the door. 

This place is so popular that you can pre-order slices online to reserve the flavor you want. It was Matt's idea to do this so that my parents could try a fun place while they were here. Although I planned to go, I was really tired after lunch, so we decided Matt and my dad would pick it up while my mom and I stayed home.

I was thinking about taking a nap, but that wasn't how it went. Through tears, my mom told me my dad has had a really hard time. 

"He's always had a soft spot for you, because you remind him of me," she said in that sad, halting way that is so familiar. 

"I know," I said. 

"He was so sure you were going to be fine," she said.

Will I be fine? I'm trying to tell myself yes, which is one of the hardest things I've ever done. I am still trying to believe it because I don't see any other way to survive.

"Honestly, every morning morning feels like waking up to a nightmare," I said. 

When I'm dreaming, it's a different reality. The fact that I have a brain T-word and the C-word hasn't entered my dreams yet. I hope it never does.

When I was a toddler, I complained to my parents that my head was hurting when I watched TV. For some reason they were worried that I might have a brain t-word. My Mom says that was one of the only times she's seen my dad cry. 

I just needed glasses. 

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Matt and my dad came home with three slices of cake: lemon, nine-pound chocolate porter, and chocolate blackout. We put them on plates and passed them around in the living room, each of us trying the different flavors. 

The lemon had a tangy injection of lemon curd in the middle. I thought it was better than the lemon cake we had at our wedding, but it wasn't my favorite. The chocolate blackout was good, but the nine-pound chocolate porter was the best. It's Matt's favorite--dense, and impossibly moist. Chocolate at its finest.

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When crying kept me from sleeping early this morning, I looked online for the answer to a question that was weighing on my mind. If I die, what will it look like? According to my sources, I will just be tired a lot because of the pressure on my brain. It doesn't sound like I will lose my mind, thank God. Most likely, I will get tired more and more until one day, I will slip out of consciousness while I'm sleeping. 

I hope this is many years off, but it's something I wanted to know. It actually brought me a lot of peace, because I've always said that's how I'd prefer to go if I had a choice. I'm not as afraid of death as I used to be, but I don't want to suffer. Ideally, it will happen when I'm old, laying in bed next to Matt.

I should probably ask Dr. Graber if this is correct considering my type of t-word, but it's not something that is easy for me to talk about. I mean, we're talking about death here. And I'm only 37!

I know people get c-word much younger, or even die. Two friends from my high school had young children diagnosed with it. One of them is still alive. The other is not. 

Years ago, I heard that Alisa, a friend I had growing up, had been diagnosed with Leukemia. Although I was shocked and saddened when I heard, I think that part of me didn't believe it. I hadn't talked to her in who knows how long, and after moving to Spokane and then Seattle, it was something I knew, but didn't think about often.

A few months ago, I was going through an old box of notes that I had taken home from my parents' house. They were mostly the kind we passed to each other in class or in the halls as we laughed and socialized between middle school periods. Many of them were from Alisa, A.K.A. "Al" or "Slimey". Most of them addressed me as "Sexy". Several of them said nice things about me, like that she thought I was pretty, and that all the boys liked me. 

When I visited Salt Lake not long after, I asked my mom if she could text Alisa's mom so that I could get Alisa's number. A couple of days later, as I was about to leave for the airport, I found out that she had passed away. She was a year or so younger than me.

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Part of what is hard is that I feel like life just got started for me. After many years of fairly short relationships, I moved to Spokane for a fresh start, and then to Seattle. Matt and I met a few years ago, but we just got married last Spring. We bought a house in the suburbs at the end of August. We wanted to start a family. 

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The Unpicked Apple

 

A Ripe Apple, deep red

Unpicked, drops into the dirt,

Rots, and unexists.

I wrote this Haiku in January. I was struggling to find meaning in my life, which happened to flip a massive bitch recently. So, this blog will do the same. I will now tell a more current story through my journal entries. 

March 21st, 2022

The doctor just told me I have the C-word. Brain C-word, to be exact. Type II Astrocytoma. This type is not benign. We knew this was a possibility, based on a number of CT's, MRIs, neurosurgeon and oncologist visits. We knew it was near my brain stem, and thus inoperable, which was devastating. But for about a year, the doctors had told us that they didn't know what it was. 

It was "not typical," according to Srinivasan, a neurosurgeon my doctor had sent me to after my first MRI. We saw this as a good thing, and even though I shed some tears, we decided that our only choice was to stay positive and expect the best outcome. 

Whatever this was, it was causing what is called a Chiari malformation. My cerebellum is swollen, so it extends farther than normal into my brain stem, causing a restriction of spinal fluid flow. This was causing my new headaches. After a lot of thinking, we went ahead with the surgery to address these headaches by removing some bone in my C1 to create room for my spinal fluid to flow. To perform a biopsy on the area of concern, they had to make a small hole in my skull, so we did that at the same time. 

Since we previously melted down after reading some MRI results, we asked the doctors not to release my biopsy results online. We decided to believe that the results would be negative and speak with Dr. Graber when they came in. Since Srinivasan had told us it could be an "inflammatory response," we believed that's what it was. Together and separate, we imagined the relief we would experience when the doctor gave us the good news.

After the surgery, my oncologist Dr. Graber specified to his nurse that he wanted to see me in person. Positive thoughts or not, I understood the implications and immediately freaked out. Matt calmed me down by saying that the doctor probably just wanted to look at my incision. 

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Our positive intentions had been wrong. I tried to harness the tears and focus on what the doctor was saying, but my mind was hurtling through a minefield of fears and confusion. It helped that the bottom half of my face was covered by a mask, but most of my emotions showed through my eyes. Dr. Graber spoke calmly, but I broke into small sobs as I asked certain questions. There were times that he seemed to see my sadness and try to finish his thought before I started up again. I apologized multiple times, to which he replied "Why?" He encouraged me to let out my emotion. I don't think he knew what he was asking for.

I collapsed into Matt's arms as we sat down on the couch just outside Dr. Graber's office. 

"What are we going to do now?" I asked.

"We just keep going," Matt said. 

He helped me get myself together just enough to make it to the car. When we got there, I pawed around for my phone, which wasn't in my usual jeans or jacket pocket. 

"I must have left it in the bathroom," I said, too exhausted to get upset. I knew that Matt would go find it for me. He grabbed his "screened for COVID" sticker out of his pocket and slapped it back onto his hoodie.

The parking garage was dark and gloomy. In the safety of our Camry's space, I wept without control. I didn't realize that there was an older man in the car directly facing us. 

It felt like the longest wait of my life. He left his phone with me so that he could call it if he found mine. But there was only silence.

I felt miserable as I wondered what was going on. I waited a few minutes, and then called my phone. No answer.

Finally, the phone buzzed. He had found it in the doctor's office. The office had closed, so Matt talked a security guard into letting him in. When he came back, I saw that his COVID sticker was upside-down.

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About ten months ago, Matt and I were visiting Magnuson park as a recently married couple. It was one of the first hot days of Summer in Seattle. While in the car, I felt a dull pressure in my head, kind of like what you feel when you need to pop your ears on the plane or in the car. 

As we walked along the sidewalk, we saw people playing around on the beach and in the water of Washington Lake. We came to a wooded area to look for birds, and I started to experience something I had never felt before. Looking at a bird, I noticed a foggy, wavy spot on the left side of my field of vision. As we walked and looked around, it grew, becoming a crescent with jagged edges that were constantly moving and flashing. Bewildered, I stopped and told Matt, who became concerned and suggested we walk back to the car. He held my hand as he led me there, and we drove home. 

From that point, often when I had just woken up in bed, I felt a pounding headache that moved from the back of my neck to the front of my head. It would pulse a few times, sometimes eliciting a shout of pain, and then disappear. But then the visual disturbance from the park would appear. It would last about fifteen minutes, and then fade away. I would sometimes experience a version of this when I crouched down or looked up too long.

I made an appointment with my neurologist, Dr. Nago, who medicated me for migraines but seemed concerned about these new headaches. He told me to get a CT scan. At the time, I was just following orders, knowing that they do these things to rule out anything serious. When Dr. Nago called me after the scan, he said that they saw something. He wasn't sure if it was a "shadow" or something else, so we scheduled an MRI. 

Although I was told that someone would call me the Monday after my MRI on Thursday, no one did. I called, but Dr. Nago was on vacation, and after multiple calls and a message on Mychart, another doctor finally messaged me back a week after the scan. "MRI showed nothing acute such as bleeding or a stroke. There are some findings that are similar to what the CT showed. A follow-up with Dr. Nago is recommended to discuss in details about these findings and next steps."

I talked to Nago, who sent me to the neurosurgeon Srinivasan, who sent me to the oncologist Graber, who after surgery and a biopsy told me I had the C-word.

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I promised my Mom that I would call as soon as I knew, so on the drive home, I called the house.  The freeway was noisier than I expected, so it took all my energy to force out the words. Matt helped. 

My mom was audibly emotional, but said "I believe in miracles."  My dad sounded calm and sweet, but he feels far more than he shows. 

After the call, my body filled with anxiety. The initial shock had faded, but calling my parents had made it real. 

The C-word is not supposed to be for me. It is supposed to be for stories you hear about other people.

When I met Matt, his dad had lived with both lung and prostate C-word for over ten years. While we were together, his Mom contracted ovarian. Sadly, Matt's father passed away a couple of years ago due to complications. But he was 75, and his Mom is now 78. I'm only 37. 

Maybe I came too close. It happened to Matt's dad, his mom, then me. I believe that if you think about something a lot, it will manifest. The law of attraction. Thoughts become things. 

My thoughts became darker as night came upon us. 

"You don't have to make your mark on the world, or impress anybody. There's nothing you need to do to justify being alive," Matt said, reading my mind as he usually does. 

"You're not here for the world. The world is here for you. The trees, the birds," he said. 

I cried, tears tumbling off my cheeks as his own made soft, slow trails down his sad but determined face.

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