MidJourney AI Art

Astrocytoma Blog Chapters 1, 2, 3, 4, 5, 6, 7, 8, 9, 10

“Mortality gives meaning to human life. Love, friendship, these are precious because we know they cannot endure.” - Data

“We have to optimize the management of your depression and anxiety for the rest of your life with medications,” My first Neuro-Oncologist said. “It's hard to look at old data and match it with new molecular information. We’ve only known about these variations over the last few years. It's an evolution process. Like the omicron is a new version of the COVID virus. It’s going to be hard for you because it’s hard for everyone, because all we have is information from the past even though we have new information about the biology. I can’t even estimate the percentage likelihood of a recurrence. The things we worry about the most in Astrocytoma aren’t necessarily in your biology, but we don’t know how it will address your recurrence. Our current understanding of Astrocytoma isn’t well known, and we expect many people with your grade to be able to live between seven to eleven years. We’re just putting the tumor asleep for some time. I hope for decades but I can’t be one hundred percent sure about that. I’m never going to get to a place where I’m not worried and that we don’t need to constantly have scans with you. This treatment isn’t a cure. I’m never going to get to a place where we don’t need to be worried. You shouldn’t either.”

“This is what’s bringing me so much anxiety,” I said. “I realize you’re trying to be supportive and I’m very thankful but…”

“No, I’m realistic,” she interrupted. “I mean I’m giving you my medical experience based on caring for patients with your type of tumor. But the anxiety you’re having is related to the uncertainty of all of this. We know we might be able to extend your life but the time before it grows back, we just don’t have an idea for it.”

What more horrifying things can you hear from a doctor? She thinks I’m supposed to believe I can randomly die from a tumor that has been as nearly 100% removed as scientifically possible, even though this tumor's genealogical parameters are understood to be the least challenging. And she told me this while I was receiving radiation and chemotherapy and not taking any depression or anxiety medication. Why was she saying this, when my Radiologist said things like:

“There's very little unknown about Astrocytoma. Please understand I have no idea when your life is going to be challenged but I can tell you the likelihood of it being from your diagnosis is just statistically unlikely. Even if you were to have a recurrence of the tumor, we’re working on vaccines that will be out of trial and supported by the FDA in the next five years.”

“Everything has gone smoothly. I don’t expect anything else but smoothness for the time to come. I’m talking longitude. I expect to see a good MRI scan in the next couple of weeks and I expect subsequent scans to look good. And at some point, I expect all of this intensity to peter out and you to get back to life feeling normal. Good things are to come, Alex.”

How can these two doctors see things so differently?

At the time, I felt like I was making a mistake by going to Google and reading EVERY paper I could find. Everything I read was just so terrifying for the first few weeks. Diagrams of survivability, breakdowns on treatments, how some countries think they're benign, but others see Astrocytoma as an extreme form of brain cancer. It was so strange to find paperwork from the early 2000’s beginning to predict the average survival rate of 7 years. It is even stranger that the paperwork after 2010 predicts the average survival rate of 14 years. It was only 2016 when they had found all the roles of the genes involved with Astrocytoma. By late 2019 they started working on vaccines. Now the Astrocytoma diagnosis is changing in titles. Ten years ago, mine would have been called “Anaplastic Astrocytoma Grade III”. It is changing its title with the understanding of the genes. Now my diagnosis is called “Astrocytoma, IDH-mutant, CNS WHO Grade 3”. I realize this may be difficult to understand, but the changes in the naming conventions are literally happening because of how rapidly Astrocytoma information and treatment is being discovered.

The very UCSF website says: “Finding information about prognoses and survival rates is a personal decision. The current statistics are only summary data, and don’t necessarily reflect results from new or experimental therapies. These data do not determine how individual patients might respond to their treatment - everyone is different.”

What was so strange by this point was talking to the Neuro-Oncologist and Radiologist in person. It wasn’t just the content of their words, but their facial expressions and attitude. The optimistic radiologist was so casual, making eye contact, smiling, commenting on the superhero shirts my dad was wearing. Our sessions together seemed so… normal. If I asked a question, he explained things deeply but casually. He told me I had a mutation where even though historically, literally through microscope images, it looked malignant but after looking at the genes, it's not going to risk my life anytime soon, that I’m going to live a very, very, long time and there was only some chance of a recurrence. The vaccines are being tested now and would be accessible in the next few years.

The terrifying Neuro-Oncologist had a fake looking expression of concern but no mannerisms of it. She had just a worried look until I asked a question, when her face turned to anger, and she began to sound so… arrogant. I’m incurable, I’d be a fool not to keep coming back to her, she anticipates me living seven to eleven years.

Before I got the good news for my last post, I had been having another crushing event just washing over me for the last six months. It took so long to process this that I'm shocked it's taken this long to post anything about it. I simply never brought it up during my first post because I was dealing with it back then. What I didn’t realize was that I was about to learn so much more about the human condition.

“No, you don’t understand her,” my long-distance girlfriend said. “Look on the UCSF Brain Tumor webpage. Notice how there are only men in Neurosurgery? Women are treated poorly in masculine hierarchies. You need to just listen to her. She's not lying to you, she's telling you the truth, you're trying to avoid it. And you’re just being sexist by only believing your male doctors.”

I was so shocked my girlfriend said this that I began to cry like a frightened little boy. How was I being sexist by wanting to believe in the optimist and not the darkness extremist? The Neuro-Oncologist’s gender had never crossed my mind. Why was my girlfriend making similar facial expressions? Why was she sounding so angry and as arrogant as the Neuro-Oncologist?

“Listen,” my girlfriend continued, “I think you’re going to live a normal length of human life but what are you going to do when you lose all of your hair? Also, most people I know who had cancer lost several or all of their teeth. Have you thought about what you’re going to do? What happens if the radiation makes you retarded in the next few decades? Are you really going to want to live that long?”

I was completely sobbing, like a five-year-old boy who was being crushed by his worst fears. “Did the Neuro-oncologist call you and tell you this was a possibility?”

“No,” my girlfriend said, “I just know she has to be focused on the worst-case scenarios to keep you as safe as possible. It’s just like I had to be focused on what could be the truth because of the way my mother died of cancer all those years ago. Everyone was just sitting next to her in the doctor's office holding her hands and giving her hugs, but I had to focus on her paperwork. I was never lucky enough to be close to her. You should stop thinking of yourself and start thinking about how you’re hurting everyone.”

This was so unlike anything I had ever experienced, or ever heard. Every tiny amount of this was so foreign to me, there was a part of me that felt like I was doing something wrong.

“You need to just stop reading about your diagnosis,” my girlfriend continued. “You need to just start back at work and not tell anyone anything because I’m not going to help you financially when you’re billed millions of dollars for having this treatment.”

I remember sobbing while I checked my medical billing but was totally baffled to read that my insurance had nearly completely covered the bills. What I was expected to pay are just peanuts in comparison to what my girlfriend was strangely expecting. And how was I going to return to work during my radiation and chemo? I was struggling just to speak and write.

Our crushing conversations continued for the next couple of weeks. It was so strange that when I was receiving radiation every day and having to give samples of my blood, my girlfriend was saying things like, “I love you, but I know I can’t trust you. I can tell you’ve already found someone else you’re dating.”

My girlfriend was saying this while my Neuro-Oncologist was saying, “Our current understanding of Astrocytoma isn’t well known, and we expect many people with your grade to be able to live between seven to eleven years. I’m being realistic. You need to start taking medications that can help you with your mental health and report things to me. I need to work with you as long as you can live.”

This was the deepest darkest point from this entire experience. My Neuro-Oncologist was trying to make me believe I was going to die soon, and my girlfriend was telling me she didn’t trust me, that I was cheating on her. I was forty pounds overweight from the plethora of medications I had been receiving after the surgery and now missing hair on the left side of my head. I thought I was going to die, without my girlfriend loving me.

She was terrifying me. How was she coming up with this? Every day I woke up just simply terrified, but I’d find a way to write her some funny joke. She’d be a ghost for days before coming back and talking to me like I had done something wrong. She’d accuse me of cheating on her, accuse me of hurting her, and say incredibly hurtful things while I received radiation every day.

“I think its really stupid you and your dad seem to treat Star Trek like its a religion or something.”

What is she talking about??? We’ve never had anything like this happen before. What she was mad at me for was not having the time to play World of Warcraft with her. Yeah, literally…

… What???

What!!!???

I’m so glad that I found the Facebook support groups. I’ve added so many of them as friends. I’ve had so many truly incredible conversations. They encouraged me to post questions across the Facebook groups about these parts of the experience. I am so surprised about what happened next.

I was not expecting 41 comments. Evidently, the experiences I was having with my Neuro-Oncologist and my girlfriend were not only very common, but very well understood. I was shocked at the volume of links people were sending me, either in the post or by messaging me. There is such a significant volume of information.

“No, you don’t understand her,” my girlfriend said. “Look on the UCSF Brain Tumor webpage. Notice how there are only men in Neurosurgery? Women are treated poorly in masculine hierarchies. You need to just listen to her. She's not lying to you, she's telling you the truth, you're trying to avoid it. And you’re just being sexist by only believing your male doctors.”

My girlfriend's expression when she said this to me, while I was sobbing, was the same facial expression the Neuro-Oncologist made while talking to me.

Then the Trekkies reached out:

No empathy.

No awareness of it. Nothing but self-focus. It had been shaped by a culture. A culture different from mine.

Suddenly the answer was so loud. So well defined by this Trekkie. Here in real life, we have another way to understand it:

WOW… Its like he was in the room with me watch what she did to me.

But wait, there is more!

I recognized an expression, a facial structure while my girlfriend was talking to me. I recognized it in the Neuro-Oncologist as well. It was suddenly so clear what it meant now. Why didn’t I ever consider it? This had never even crossed my mind. Both my girlfriend and my first Neuro-Oncologist were simply trying to control me.

“Narcissism is extreme self-involvement to the degree that it makes a person ignore the needs of those around them. While everyone may show occasional narcissistic behavior, true narcissists frequently disregard others or their feelings. They also do not understand the effect that their behavior has on other people.

It’s important to note that narcissism is a trait, but it can also be a part of a larger personality disorder. Not every narcissist has Narcissistic Personality Disorder (NPD), as narcissism is a spectrum. People who are at the highest end of the spectrum are those that are classified as NPD, but others, still with narcissistic traits, may fall on the lower end of the narcissistic spectrum.

People who show signs of narcissism can often be very charming and charismatic. They often don’t show negative behavior right away, especially in relationships. People who show narcissism often like to surround themselves with people who feed into their ego. They build relationships to reinforce their ideas about themselves, even if these relationships are superficial.” - WebMD

I’m just so shocked I never realized it until I watched several videos and reread through my girlfriends text messages.

Playlists on the subject.

“There is no such thing as the unknown. Only things temporarily hidden.” - James T. Kirk

Neither my Neuro-Oncologist nor girlfriend were thinking of me. Neither of them even considered how they were hurting me. They were only thinking of themselves. I wasn’t a person; I was something to serve them.

“You need to just listen to her. She's not lying to you, she's telling you the truth, you're trying to avoid it. And you’re just being sexist by only believing your male doctors,” my girlfriend said.

I’m not a person. I am there to serve the Neuro-Oncolgist’s research. I am not a boyfriend, someone to care about, I am an animal expected by my girlfriend to protect her from her coping mechanisms.

She and I had been together for just over three years. Because of our distance, most of our time was spent on the app “Discord” while we played video games together. During COVID we spent eight to ten hours a day on Discord video with each other. We talked constantly. I just thought we were in love with each other. It was like we were a married couple. One of us would fly out to visit the other for weeks at a time. We traveled around Texas and California together fifteen or twenty times over the last three years. There were so many times it felt like a totally normal and incredible relationship, while other times, she seemed like two completely different people.

The nights we were gaming and video chatting, she was loving, sweet and supportive. When we were together, she felt like someone trying to rip me apart. Then she would try to reprogram me to worship her. Like she thought she was a queen.

There were so many times we were in person and things were amazing at first. Then out of nowhere she’d be standing over me, pointing at me, telling me how useless I was, even convincing me I was doing something wrong. She would just crush me, crush me to the bone. There were even a few times I told her I loved her but if she wasn’t happy with me, why was she with me? She didn’t need to stay with me. She could find someone else who would love her just as much as I do but might feel more fulfilling to her.

One time she broke up with me completely at random and flew home to Texas. I thought that was that. She blew up my phone, Discord and followed my characters in video games telling me I was ‘supposed to chase her.’

To be honest, I did once. I flew out to Texas in the middle of the night after a long, angry conversation where I had to just hang up on her. I even brought her flowers and asked her not to leave me. She was so smug… I was such a fool.

My girlfriend is 14 years older than me, so her children are all young adults. In the years we dated, spending the entire week on Discord and traveling to see each other in person, she forbid me from tagging her on Facebook. She said she didn’t want her children to find out about me, that she thought I would do something to them. I remember that statement breaking my heart. Why would I do something mean to her children? Even stranger is that she introduced me to her middle child. I’ve been working with her twenty-year-old son for the last year and a half and we’ve even met in person. She ordered me just to act like she and I were friends. I’ve always respected her request; I’ve just never understood it until now.

Just a few weeks after she sent me those text messages I’ve shared, I was shocked by an Instagram suggestion. A post popped up, a post by someone I didn’t follow. I was shocked to see him with my partner who had terrified and abandoned me. The two of them were traveling the world, as boyfriend and girlfriend. From reading the description, it was my partner's ex-husband. I had seen pictures of him and even added him on Facebook when I first met her. Back then I saw her just as a friend, thinking she was married to him.

Over the last three years, she had told me she had divorced her children's father about the time she and I met. She mentioned he had been nothing but controlling and transactional with her. I didn’t quite understand but I thought I had no reason not to believe her. She used to tell me stories about him, about how she had wasted twenty-three years with him. That he was toxic to be around and demanding in ways she was so glad to be away from. I believed her because why else would someone say this about someone? This was three years ago.

Imagine being accused of cheating on her while I’m being told by my Neuro-Oncologist I’d get to live seven to eleven years. It suddenly revealed the character of someone I had been in love with.

She wasn’t conscious or self-aware of what love, real love, is. Her ex-husband had just been an object she used to make herself feel better for twenty-three years. Then I became the object to make herself feel better at some point. She was completely unaware of who and how she had hurt the people around her. We have just been objects to her standard narcissism.

She was accusing me of cheating on her, while my doctor was telling me I was going to die. What are the chances these two people I had trusted could do something like this to me?

Why had I broken down and cried in front of both of them?

There’s a part of me that is hurt by what my girlfriend did but to be honest, I feel bad for her ex-husband. He probably thinks something amazing has happened to get his ex-wife back. She's going to hurt him again. She had no problem hurting me.

Friends

First Neuro-Oncologist

“Narcissists love secrets. For narcissists, secrets are power. It’s something like a little bit of currency or a weapon they can take out down the road. It makes them think they’re getting away with something. It gives them a sense of power and even fuels their grandiosity… That's why narcissists collect people, because you can never have enough supply.” - Doctor Ramani

I started to realize something kind of profound at this point. It's so difficult to convey, so difficult to explain. I’ve been so devastated, so terrified, so crushed, and gone through so many other types of darkness for the last few months. I wanted to believe what my father said about the Neuro-Oncologist being terribly overworked and didn’t know what she was doing. But my interpretation, just from her expressions, started to make me realize something.

There are some people who can’t see the uneasily defined. Some can only see numbers but can’t figure out what they mean. My ex-girlfriend and my first Nero-Oncologist are these types of people. With my diagnosis, they think my life is more than half empty, even though it possesses unique biological numbers. While Google is filled with terrifying results about Astrocytoma, if you pay attention just to the years of advancement, you’ll realize it’s traveling at warp speed. The breakthroughs they’ve had are coming so quickly that they can't define them yet. That's why legally, they must say it's “incurable”.

“You need to just get the idea of seven to eleven years out of your head. There is just no way to predict something like that. You can move on from thinking about it. What happens six and a half years from now when you’re feeling fine but are paranoid about it? There is a very real phenomenon called “Scanxiety'’. It happens to everybody, it doesn’t matter what type of cancer, everyone has Scanxiety. It's always worse in the beginning, and then as you get out from beyond that initial ‘This is my diagnosis, all my treatment’, all of that stress, that eventually goes away. I’ve only been doing this for twenty years, but I have lots of patients I have been following for that long. When I started doing this, I inherited some patients who are now well beyond that. They have been just followed for decades and they’re usually pretty comfortable getting scans. They’re beyond that. I think the most important thing, if I can get you to do it, is to basically live your life to its fullest.” - My new Nuero-Oncologist.

This is what it means to be human. To empathize with other people.

May your pain be in service to many...

Astrocytoma Blogposts 1, 2, 3, 4, 5, 6, 7, 8, 9, 10