MidJourney AI Art

Astrocytoma Blog Chapters 1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11

“Be a positive energy trampoline – absorb what you need and rebound more back.” — Dave Carolan

My Diagnosis:

Astrocytoma, IDH-mutant, CNS WHO Grade 3 - Left Side Insula

ATRX p.K1045* 54%
IDH1 p.R132H 32%
TP53 p.P278S 77%
Ki-67 Proliferation rate is estimated at 3%

No high level amplification or deep deltetions (including CDKN2A) are identified.

It’s not just what I survived that impacted me; it's where my tumor was removed from. I had my Astrocytoma diagnosis in my left-brain structure called “Insula”. I had been researching that part of the brain since I’d had my surgery. It was hard at first to read the complex published papers, but after some time, I was suddenly able to read it clearly.

So much Googling, counseling and being aware of things that seemed like anomalies, I had a new way of processing why I cry on the hardwood floors in the middle of the night. I was having a range of thoughts simultaneously. From time to time, I had trouble just saying certain words.

“You don’t sound like you’re struggling with your voice, everything you’re telling me seems amazing. These days you’re reminding me of the movie Phenomenon.” - My mother during a phone call on Wednesday at 4:12pm.

To my curiosity, I suddenly remembered the movie “Phenomenon”. I saw it shortly after it came out. My family rented it from Blockbuster video in Santa Clara California. Back then, it was on VHS. We rented it Friday night on July 7th, 1997, at 7:32 pm. There was a second time I remember seeing it on DVD on December 14th, 2003. My first girlfriend had mentioned that her grandfather had been in a couple of scenes. Her story was so adorable, we watched it. She’d point him out in every scene he was in. It was a very nice movie that almost felt like Science-Fiction. Strangely enough, the only trailer I could find was in low resolution on YouTube. I could only find the movie on Amazon and it would only let me “rent” it. It seems like everyone has forgotten the movie. I had an overwhelming urge to watch it at 3:26 am.

Pretty cute, right? The movie is about a man who sees a flash of light one night and falls to the ground. Slowly, he starts to have strange abilities.

Here is a 14:56 “movie shortened” video on YouTube. If you can't buy it or rent it, I’d really encourage watching it. I would highly recommend watching either the full version or this short one before continuing reading this blog post. Just FYI, my first girlfriend's grandfather is the man wearing the blue hat at 5:37 in the shortened YouTube video.

Adorable, right? It oversimplifies the story but it's a good way to understand the rest of this post. If you’ve watched it, start it again and listen to what the presenter simplifies at 11:14. In the full movie, that scene is 1:30:44 into the movie. He’s given his diagnosis. Watch one of these, seriously. It’s going to blow your mind.

I was expecting the scene when John Travolta’s character is diagnosed with a form of brain cancer. Unless you’ve watched the full movie, you’re just not going to believe me. I’m going to spoil it though, he has Astrocytoma. Not making that up. This movie was based on an arrangement of actual events with real people who had forms of Astrocytoma. No one could levitate objects, but people learned things amazingly quickly based on where the tumor developed in their brain.

“Neuroplasticity is the brain’s ability to rewire itself by paving new neural pathways when it feels the need to adapt. In simple words, our brain is ever-growing, ever-changing, ever-improving.” - Calm Sage

Mind blowing, right? I’ve had the Astrocytoma for a long time. The doctors at UCSF say I’ve had it for at least ten years, but I can remember related events from much longer ago. I used to have panic attacks out of nowhere as far back as 1998. This now makes sense to me. It's a reaction from the impact of my Insula, the section of my brain where the tumor was slowly constructing itself. Astrocytoma doesn’t only create unique impacts on your brain when it's growing. Since I’ve had mine removed, it’s made a big impact on my consciousness. Notice the time and date details across this post so far? This “ability” seemed to pop up in my head right about the time I received my radiation. I thought I was going crazy.

I can show you something the Astrocytoma has also impacted with its removal: my ability to create computer generated, “CG”, art. Don’t believe me? Just check out the Artwork page on this website.

Since my surgery, my interpretation of reality has changed drastically many times. Like I've said in previous posts, there are days where I feel crazy. There are so many concepts that I feel aware of now and it's so hard to explain.

(Yes, pieces of art I described to an A.I.)

It’s been so difficult to explain so many ideas that have been impacted by my surgery, radiation, and chemotherapy. It's hard to even communicate them. Imagine these images. Imagine the left image is what time used to feel like to you. One day after another. The thick lines could define a day’s happiness and the thin lines could define something like your income after working a hard day. It just feels like there are different days that have some sort of unrelated properties but are linear.

If you can imagine that, now imagine the sphere on the right is how you interpret things now. That space, time and thought are not the separate things that we think they are. I have no idea how to define this to be any closer to a sense of “truth”. But I’m not sure I need it to be a sense of truth, maybe all I need is to interpret things that are more related to each other in some sort of way.

It's almost like patterns, like watching Phenomenon, are related enough that it makes me more aware of the time of elements. I can’t remember what time or what I ate for breakfast, but if I was asked something like “How many times have you eaten eggs this month” I’d immediately know that I’ve eaten eggs 13 days this month and could tell you the exact times.

This has something to do with my tumor having been in my left side “Insula”. That section of the brain is beneath the frontal cortex, the section of the brain that conducts logic.

The frontal lobes are believed to be our behavior and emotional control centres, meaning that this area is activated when needing to control our behaviors to be socially appropriate and with controlling our emotional responses, especially in social situations.

Moreover, the frontal lobes are thought to be the home of our personalities. Alike to most lobes in the brain, there are two frontal lobes, located in the left and right hemispheres.

Each lobe controls the operations on opposite sides of the body: the left hemisphere controls the right side of the body and vice versa.

It is believed the left frontal lobe is the most dominant lobe and works predominantly with language, logical thinking, and analytical reasoning.

The right frontal lobe, on the other hand, is most associated with non-verbal abilities, creativity, imagination, musical, and art skills. - Simply Psychology.org

With a very slowly growing tumor that was putting pressure on this part of my brain, it has made a huge impact with its removal. I started reaching out to many people who had similar Brain Tumors. Its been so inspiring to hear their stories:

Linda Rickford

My name is Linda Rickford and I live in the UK. I got to 'know' Alexander when he asked to join the Astro Brain Tumour Support Low Grade Glioma support group on Facebook, of which I am an administrator, and he asked me to write a few words. Little did he know that 'a few words' is an impossible task for me! Once I start with our story or get on my soap box, it is hard for me to know where to stop. But here we go…

Astro Brain Tumor Find

Around 14 years ago, 28 year old son was diagnosed with a rare type of brain tumour, an ependymoma grade 2. He had surgery and radiotherapy and was left with disabilities as a result. An ependymoma is part of a group of brain tumours known as low grade gliomas, along with astrocytomas, oligoastrocytomas and oligodendrogliomas. I learned that approximately 86% of those diagnosed with a brain tumour will die within the first 5 years; you can imagine how devastating, frightening, scary, terrifying (no end of adjectives to describe it) that was to hear. I learned a lot of other things very quickly, not always good things, and it was a very dark time. The biggest mistake was to Google....all doom and gloom and extremely depressing and disheartening. I also discovered, on the roller coaster ride we were now on, that most brain tumour research funding went to high grade tumours and that low grade gliomas were very rare and were considered 'the underfunded of the underfunded.' I, personally, couldn’t understand that at all; why wait until the tumour changed to a high grade before treating/curing it? Let's get to it when it’s a low grade and stop it changing to a high grade in the first place. Made perfect sense to me! I decided to start fundraising for low grade glioma research as, for me, sitting back and letting it all just happen around me was simply not an option. After raising thousands of pounds Astro Brain Tumour Fund, the only charity in the UK to raise funds for research specifically into low grade gliomas, I was invited to become a trustee.

Well, time has passed and against all the odds, 14 years later, my son is still with us. Along the way, I learned a lot of things that the medical professionals don’t tell you. I learned that doctors have a duty to tell you the prognosis and that they are not always kind in how they share that information. They don’t mean to be intentionally cruel but, actually, there is no gentle way of telling people. especially young people, that they potentially have a life limiting disease. I take a great deal of delight in telling others, new to this journey, that my son is still with us because it gives hope and 'hope' is what is so very important. I learned that statistics do not mean YOU; statistics are just numbers and many people outlive the prognosis. People who outlive the prognosis don’t tend to post in support groups…they are just getting on with their lives. So we don’t hear about them. I learned that when our researchers are packing up their tools, ending their days work and going to bed, others on the other side of the world are just getting up….so research is going on 24 hours a day. I find that incredibly reassuring. I learned that amazing people have galvanised researchers/scientists/medical professionals to work WITH each other instead of in isolation of each other and have formed organisations like the International Brain Tumour Association (IBTA) and now share their learnings with each other. Organisations like Brain Tumour Research in the UK are constantly lobbying MPs to get Government to provide funding for this much neglected disease and to galvanise innovative research. So many people working so hard to sort this!

Most importantly, and I can't stress this enough, I learned that a positive attitude can carry you a long way and I discovered mantras that I repeat to myself often:

“Happiness is a decision you make.”

“Right now, in this moment, things are ok.”

“It’s ok to visit the dark place, just don’t unpack your bags and live there.”

“Stop fighting it, it just wastes your energy. Use that energy instead to accept it and it will give you strength.”

My most important mantra is the one that has really steered me to where I am today: 'It is very hard to be miserable yourself when you are being kind to someone else.' And that is just so very true.

Don't get me wrong, I am not perfect and I have had days where I have just wanted to walk away from it all. When my son was diagnosed, I can recall the feeling of being so dreadfully alone. I used to describe it as like suddenly waking up and finding yourself on a stage, in the middle of a play but without knowing the plot, or the lines you were supposed to speak, the part you were meant to play, who the other characters were…it was just so bewildering, frightening and so alone. I now admin the Facebook support group, hosted by Astro Brain Tumour Fund, and I do my level best to help those going through the trauma of diagnosis and treatments. I happily admit I am no researcher/scientist, the mechanics of tumours escape me, but there are people in the support group who do their own research and are so willing to share what they learn with others. That feeling of being alone just vanished as I was now part of an amazing group of people, all helping each other as best they can. I have made some amazing friends that I would never have met and I have, to be truthful, lost some as well but every one of them left an imprint on my heart.

I look to the future with hope and optimism...it's the only way to go.

If you would like to learn more about Astro Brain Tumour Fund, please visit www.astrofund.org.uk

Isabel's Story

Conquering a Brain Tumor with a Care Team That Feels Like Family

For 33-year-old Isabel C., family means everything. When she learned she had a brain tumor shortly after giving birth, her first concern was for her two young children.

“My world immediately turned upside-down,” says Isabel. “But not once did I think about me. I only thought about my kids, my babies.”

A few weeks after having her son, Isabel began experiencing gastric rising symptoms during her sleep. She said it’s similar to the feeling you get in your stomach when you’re riding a rollercoaster.

Doctors attributed the episodes to stress or potentially postpartum depression. She suspected something else was at play.

The entire team of doctors, nurses and staff treated me like family. They are my angels who cared for me with love. Thanks to them, I’m alive. I’m able to watch my kids grow." - Isabel C., brain tumor patient