The Maple Seed

First, an explanation: I use the terms "c-word" and "t-word" because I believe that words are important. I think we give far too much power to these words, so I try not to speak or type them. I'm not in denial that these things are part of my current existence, but they are not who I am. 

March 27, 2020

I didn't wake up in a good mood this morning. As I've mentioned before, it's hard not to feel a little crabby when the reality of what's going on reaches my brain. My mom suggested in a text that I go back to bed, but instead, I tried to find a place for us to eat dinner. 

When we visited Utah in October, my dad had asked if I would like him to give me an LDS blessing. Although I was hesitant at first, I thought about it and decided that I should welcome any form of positive intention. But I forgot to tell him. So when my mom asked while they were visiting Washington, I said yes. 

I wasn't expecting that my dad would explain the process and their beliefs to Matt beforehand. My dad said that a priesthood blessing is based on the "faith in heavenly father" that the priesthood holder and the person getting blessed have. Matt took it in stride and thanked him for the explanation.

I cried during the blessing, not because I felt "the spirit," but because a prayer, especially one that asks to be cured of c-word, is an emotional thing. The ritual also brought me back to my childhood. Although I don't believe in a "heavenly father," I have faith that I'm going to be fine. Hopefully that counts. 

I hugged my mom and dad afterward. When we all sat down, I felt compelled to tell them that I believe God is inside us, and that the God inside me wants me to live. They nodded, even though they probably didn't agree. Thankfully my parents and I have come to a place where, for the most part, we respect and don't criticize each other's beliefs.

While talking and lounging, I brought up the Disney movie Soul again. I had told my mom about it, but neither of my parents had seen it. This movie addresses life, death, and the afterlife in an incredibly unique way, while at the same time leaving things open to interpretation. Since we weren't doing anything else, they agreed to put it on, and we watched the first half. 

(Spoiler alert! If you haven't seen it but plan to, which I highly recommend, skip the next three paragraphs.) 

As I've mentioned in other entries, the main character, Joe Gardner, dies by falling into a manhole right after getting hired by famous Jazz player Dorothea Williams. A band teacher whose mother disapproves of his desire to be a musician, Joe considered this opportunity his "big break," so he is in total denial of his own death. He refuses to follow the path he stands on toward "The Great Beyond." 

 

Joe tries to jump back down to earth, but he accidentally ends up in a place they call "The Great Before." Young spirits are assigned personalities here and attend a "You Seminar" that helps them to find their "spark". Finding their spark completes their "Earth badge," which allows the spirits to jump down to earth and start the adventure of life. 

Joe is accidentally mistaken for a renowned professor who is assigned as a "mentor" for a stubborn soul called "22." 22 has been convinced for some time that life is not worth it, even after being tutored by the likes of Abraham Lincoln and Mother Teresa.

Despite her difficult and rebellious nature, Joe tells 22 his story and convinces her to make a deal with him. She will try to find her spark in order to finish her Earth badge, but then give it to Joe. This seems like a win-win, since 22 has no interest in life and Joe wants to return to his own. 22 shows Joe the Hall of Everything, where she tries out different talents and hobbies like she has before. But even with a passionate Jazz-playing companion, there is nothing 22 is really interested in. Long story short, they find another way to make it to Joe's world, but 22 ends up inside Joe's body, while Joe ends up inside a therapy cat. 

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I paused the movie, and we took my parents to Soos Creek Trail. A friendly man saw our binoculars and gave us directions to a great blue heron rookery (nesting site.) We found it and loaned my parents our binoculars. The nesting herons were high up in some distant trees, thus hard to see with the naked eye.

As we walked the other way, my dad spotted a big nest at the top of a tree, and Matt saw a hawk inside it. Excited that my dad found such a gem, I looked up a little too long and hard, so everything started swirling around me. I lost my balance and fell forward, catching myself with my hands on the black asphalt path. 

No one noticed at first because they were looking at the bird. I regained my balance and started helping myself up when they did. Matt felt really bad and apologized, but it wasn't his fault. I have a tendency to push myself even if I know I shouldn't. 

It was a little upsetting since it reminded me of my situation. I laughed it off and tried not to let it show, but I think it bothered my mom. 

When we got back home, we watched the rest of Soul.

(Secondary spoiler alert: you'll have to skip the rest of the post if you don't want to know what happens. You should just watch the movie now 😉).

22 gets really freaked out as she and Joe escape the hospital and wander New York City, but then she is surprised by certain things: the taste of pizza, the feeling of a vent blowing air against her back, the sight of the sun shining softly through the orange leaves of a maple tree.

Joe and 22 are later caught by an "accountant" and brought back to the Great Before, where we find out that 22's spark symbol has lit up to complete her Earth Pass. Even though this was the goal, Joe gets upset because not only was 22 in his body, but she didn't find her passion, her purpose, her "spark." One of the leaders of the Great Before chuckles and corrects him: 

"A spark isn't a soul's purpose! Oh, you mentors and your passions. Your purposes, your meanings-of-life. So basic."

Joe appears to puzzle over this, but then he jumps back down the Earth with the pass 22 gave him to play jazz with Dorothea Williams. He enjoys himself, but afterward, he notices that he doesn't really feel any different than he did before. 

After taking the gritty Subway home, he sits at his piano and pulls some trinkets out of his pocket. 22 had gathered these souvenirs while in his body, including some pizza crust and a maple seed. Joe starts playing a beautiful, heartfelt song on the piano and thinks about what he saw when 22 experienced these things. Her (his) face lit up each time. Then he thinks about memories of his own life. We see him as a child, looking up at the trees as he rides his bike. Teaching kids to play music at school as an adult. Feeling the ocean water rush past his feet at the beach. 

His eyes well up, and a tear rolls down his cheek. 

I almost cried out loud with emotion as we watched this part. My tears came down like a waterfall, but I suppressed the sound with some halted, heavy breathing as Matt held and comforted me. 

I've had some talents in my life, but I've never been especially good at one thing. I still haven't found my purpose, so there have many times in my life when I've thought it wasn't even worth living.

But it is. Joe realizes at that moment that simply loving life gives us our spark. We don't all have one purpose. In fact, most of us have many. 

Whatever the case, it's good to be reminded to love my life exactly the way it is. 

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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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Jazzing

March 22, 2022

Last night, Matt and I discussed whether I would be okay at home alone the next day. I had no idea how I would handle it, but there was a chance that debilitating anxiety would take over and render me unable to take care of myself. Being home alone made that a lot more likely. He decided to call in sick. 

I took half of a Benadryl to address the itching on my incision and help me sleep. It did, but I woke up again at about 4:30. Matt gets up for work around that time, so he talked to me. 

The anxiety was back, but this time it came with nausea. It was so familiar, like an old friend you always hated. It had been over 4 years since I felt that--about the same time I met Matt. I took half of an Ativan and the other half about thirty minutes later. 

Matt suggested we sit on the front porch. Feeling the fresh, chilly air and watching and hearing the birds sing helped. We have only been together about four years, but he knows me really well. It might have been the Ativan, but I finally started to calm down. 

After coming inside, I called Jordan and told her over the phone. She was pretty calm, although I heard her voice crack a couple of times. Alli was the most emotional of everyone I told, even my mom. It made sense because not only are we close, but her best friend recently lost a sister. She has always been there for me, talking me through moments of sadness and anxiety. She has been there.

I knew I had to tell them at some point, and perhaps I should have called, but I drafted a text to tell everyone else in the family. I fell asleep as Matt watched tv. 

Later that day, Matt and I took Ruby on a walk in the neighborhood. We then went to Clark Lake park, a five-minute drive from our house and one of my favorite places to go since we moved. There is a lake, and plenty of forested space to roam and look for birds. It's a great place to forget your worries.

It was a shoulder-warming, gorgeous day. There were lots of ducks in the lake, including American Coots and what we identified as lesser scaups. We hadn't seen either of those before, and we're always happy to see something different. 

Walking along the boardwalk that goes through a grassy marsh, I heard a splash in the water. It's usually pretty quiet out there, barring the occasional bird call or frog croak. I had heard the splash once before, and both times I assumed it was a big frog or toad jumping into the water. Matt searched with his binoculars and found what he called a "swamp rat" (lol.) 

"What?!" I said incredulously. He pointed it out, and I looked through the lenses. I saw a big head and fur, and the animal was munching on some grass and then slipped back into the water. His tail was difficult to see underwater, but I was pretty sure of what it was. 

"It's a beaver!" I exclaimed. Neither of us had ever seen one in the wild before, and I had always wanted to. We were thrilled.

Nature has always been soothing to me. It almost doesn't matter what I'm doing--I will stop and watch a cat, bird, or even a squirrel if I see one. Usually, I get at least one weird look from a person (which I don't mind.) It's one of the things that will get me "jazzing." If you haven't seen Disney's Soul (which you should, and I don't consider myself a Disney fan), Joe Gardner considers Jazzing to be what he does when he plays Jazz on the piano... forgetting time, place, and everything else in the world because of that thing he loves that puts him "in the zone." Seeing that beaver brought me to that place of joy in my heart that is beyond time, even beyond life. 

Needless to say, it was just what I needed today. 

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The Unpicked Apple

 

A Ripe Apple, deep red

Unpicked, drops into the dirt,

Rots, then disappears.

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, and 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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