We are not alone. Every year, 15,000 people are diagnosed with an Astrocytoma brain tumor. It’s a game of roulette and genetics. We don’t decide which brain tumor we end up with; it’s chosen for us mostly by genetics. We can decide to give up or fight and carry on our legacy in the world today. This is my Astrocytoma experience and I know, I’m not alone!

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

“It is possible that the future may not be in the hands of the scientists, as we often believe. It may well be in the hands of communicators.” - Gene Roddenburry

On Sunday November 28th, 2021, something shocked me awake from the middle of my afternoon nap. I felt like I couldn’t breathe, my stomach roiled with nausea, my mouth felt warm, and the taste of metal had washed over my tongue. In my horror, I ran to the bathroom, thinking I was about to be sick or cough up blood.

Blind terror overcame me.

It reminded me of a specific hue of darkness, the kind where you can’t tell if you’ve closed your eyes or opened them, and you flail around trying to see your hands in front of your face. That type of blind terror is what I kept feeling through the whole experience.

Very similar, but less overwhelming sensations, had woken me up three other times in the last couple of years, but never at this overwhelming level. Just like the previous three times, by the time I got to the bathroom, the sensations stopped. I sat on the floor completely confused.

Was it just a terrible nightmare?

However, this time, the more powerful feeling came back as I sat on the floor. The sensations would return in waves that would last a minute or two then fade away. I would feel normal for up to ten minutes before the feelings would wash over me again. I took a Tylenol and Xanax, hoping to diminish whatever was happening. For several hours it hadn't stop and I thought it was COVID.

I covered my face and knocked on my neighbor’s front door. I explained to him about the flashes of extreme nausea, the metallic tongue feeling, my confusion. I remember asking if he’d be able to take me down the street to an ER here in San Francisco.

It was incredible how quickly he said “of course” and sat me down in his car. Each time these feelings would wash over me, I’d feel confused, have trouble talking, and the right side of my body felt ice-cold and sprung a bunch of goosebumps. I have a vague memory of being brought into the Kaiser ER and trying to explain the situation to someone. Then I awakened in a CT machine hearing the staff talking about the scan.

“See, it’s right there,” one of them said.

“Wow, glad you’re here. I wouldn't have noticed it at all.”

I was shocked to see them looking at X-rays from an CT I didn’t remember receiving. They walked over to me and said they had found something in my brain and were sending me to UCSF.

Again, that feeling of blind terror overcame me. Something had been found in my head. What could it be? I remember being confused as to how a 36-year-old could have something dangerous in his brain. How could that happen? The confusion terrified me, too. Things kept happening so fast, and I felt like I was flailing in that darkness, without any light to see by.

I don’t really remember how, but after being rushed to the UCSF, I woke up and found my father sitting next to me. I felt fine but had a series of electrodes attached to my forehead. The staff mentioned they were monitoring my system to see if I was having a seizure. Before I knew it, friends, coworkers, and family members were visiting me. I had no idea what to expect. But a feeling of gloom washed over me, almost like an instinct predicting something dangerous.

At some time over the next two days, a young woman with a thick accent came into my room. She was difficult to understand. She spoke quickly and nervously, and it seemed like she was still learning English terminology. At one point she said, “I so sorry you have all the brain cancer!”

Brain cancer!? Wait, I have ‘all the’ brain cancer? It was very scary hearing that, but for a second, I thought maybe she didn’t know a better word. As she continued, it seemed like she wanted to know if I would donate my diagnosis to a science research group. I was stunned to hear this from a person who didn't speak English very well but was a staff member of the UCSF.

My father and I glanced at each other, not knowing what I was being told or asked for. The way the lady spoke, everything sounded so terrifying that it crushed me. Is it really brain cancer? What is brain cancer? Could I have ‘all of’ it? As horrified and confused as I felt in that second, I remember replying, “Yes, please take my medical records to the science research team. I hope they can prevent anyone in the future from ever feeling this way.”

What the hell is brain cancer? How the hell did I get it? Did it mean my life was ending soon?

The following morning, Dr. Harvey-Jumper came into my room and had a discussion with me. To my amazement, he let me record the conversation. I’ve posted that recording to a previous blog post here on The Amaranth Chronicles website. As terrifying as this was, this is a brief but very incredible post I had no idea would bring in a bright light of hope:

"To Bear This Worthily Is Good Fortune"

On December 8th, 2021, I had my surgery. While I was terrified, a part of me was also curious about what this next experience was going to be like. When Dr. Harvey-Jumper and his staff arrived, they were very caring and very supportive. I was scared, but after meeting with them just for a few minutes before the surgery, it lifted me away from the overwhelming sense of wanting to run from the building. I have no idea how long the surgery was, but I was awoken at one point and asked to begin reading from a computer screen. At some point I was put under again and the next thing I remember, I woke up in an ER room of the hospital with my mom and dad.

The next two days were kind of a blur. I remember sleeping a lot and having trouble talking. For some reason the nurses had a walker for me and acted like they had to train me how to walk again. It was strange because I didn’t seem to have any trouble, but they wouldn't let me let go of the walker. It was very strange to be sent home with one and never have trouble walking. For several days, maybe even weeks, I remember feeling like a stack of marbles that just didn’t understand what was going on. I was confused and terrified—still flailing in the dark—but my family and friends never left my side. After about a month I was “back together” enough to be talking semi-normally but feeling totally strange with my medicine.

I received my diagnosis back in December 2021 and wish I had been told never to google the word Astrocytoma. I’ve clicked on every link, read every science paper, and seen every survivability graph. I read, and I read, and I read. The vast majority was shockingly confusing. Most countries never treat glioma Astrocytoma. That blew my mind. Imagine your doctor saying, “The grade for your diagnosis is so small, we’re too afraid to try to remove it. We’re just going to let it grow, and we’ll try surgery if it advances into something more deadly.” Imagine some countries giving the surgery and finding some people still passed away early, while others have lived for 40+ years. Imagine finding out that sometimes, the tumor grows fast, and sometimes it grows so slowly it's mistaken for being benign. There was no consistent data or story to understand Astrocytoma.

I learned the genes playing roles in the diagnosis have only been understood since 2016. That blew my mind. How could that understanding be so new? Was it because my diagnosis was really as rare as I was beginning to understand?

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.

While I was trying to learn more about my diagnosis, the panic attacks, depression, and darkness couldn’t take all of my attention, even when it felt like it was trying to. A few truly profound things began to happen very slowly that I never expected. Just the six replies to my post after my surgery surprised me. Check this post out, titled “Fear and Courage”. While the replies were incredible and helped me begin to feel more optimistic, the number six revealed something else. It made me check this website's traffic and I was blown away to find this Amaranth Chronicles website had more visitors in the last month than it had had over the last two years. Somehow, while I was terrified I could die from the tumor, this science fiction series had suddenly become more visible. I’m not sure how people were finding me, or this post, but I saw copies of the book being sold and some other incredible increases in the Instagram following:

I was using buffer.com to schedule Instagram posts to escape depression and anxiety. It was like a little escape from the darkness I was trapped in. It was so strange how some days my phone would be blasted with updates on how many people had liked my Instagram posts. But there was also a set of very small, strange, alignments that were happening. Remember the video I posted at the end of my first blog post after speaking with my surgeon? I was shocked when I started googling videos for Astrocytoma. Look at the bottom of the list:

(Its this video!)

(Check out; Not everyone dies, some people become symbols and Chapter 12: There were Four Lights)

Strange, huh? Some might think this is nothing, but if you’ve worked in software design as long as I have (UI/UX for 16 years) you might understand what I saw here. Part of me was becoming part of the message Google was growing. And if that was the case, I realized Google wasn’t communicating the information from the medical research very well. As inspiring as it was to realize I was becoming more visible on Google and the Amaranth Chronicles was becoming more popular, I realized I needed to change the way I was viewing my diagnosis.

Right when I was starting to have this profound shift in understanding, I had a rather revealing experience with the staff that was treating me at UCSF. While I was receiving radiology and chemotherapy simultaneously, I realized how the concepts and understandings of Astrocytoma were impacted by individuals.

My Nero-Oncologist was the first to tell me that I have “the best diagnosis”. But then she said, “Astrocytoma is still not understood, just like COVID”. How could it be “the best diagnosis” if she thought it wasn’t understood? I remember wondering if I simply couldn’t understand her, but when I listened to the recordings of our conversations, I realized she was talking a strange back and forth nonsense. She continued to tell me that the radiation and chemo was freezing my tumor to extend my life but one day it would be unfrozen and would cause recurrence. She even went on to tell me one day there would be an advancement to malignancy and my life would end.

I was confused. How could my tumor, which was now diagnosed as 99% removed, “thaw” from being frozen? How the hell does radiation and chemotherapy freeze 1% of a tumor? A part of me was stuck between believing her and wondering if she even understood what she was talking about. Any question I asked her, she would sarcastically ask me to call my surgeon, not to ask her. When I told her about some of the science paperwork I had found projecting long lives from my treatment, she estimated I would live between 7 to 11 years based on what she knew.

My eyes filled with tears and my heart began to pound. I couldn’t believe a doctor was telling me this. I just can’t even explain what it feels like to be receiving a death sentence. How she spoke it was so utterly terrifying. She spoke to me like we were students comparing notes, not as a person she projected to be dead within the next decade. I also didn’t understand why I had to pay $600 in cash every time she video spoke to me over the Internet. Why isn’t my insurance grabbing the bill? Had she filled out the paper wrong? Should I even believe anything she’s saying?

As if this wasn’t horrifying enough, her supporting staff were getting all their numbers wrong. They would send me messages written like: “Please let us review your blood by Friday the 1st”, then they'd attach a calendar showing me to go on Wednesday the 18th. If I asked them on which date to give them my blood, they wouldn't respond. The same thing happened when I was supposed to start my chemo and how much I was supposed to take. This was the most terrifying part. This doctor told me I’d likely be gone in the next decade but couldn't even get her calendar right.

I kept finding new bottom to these utterly overwhelming terrors. She sent me to chat with a psychologist who seemed to tell me I could choose to end my life. It was like talking to a bunch of ignorant college kids who were understanding Astrocytoma from Googling it.

“I’ve found references to individuals who have been fine since their surgery more than 25 years ago,” I said, trying to figure out why she was being so extreme.

“Yeah, well I hope you live that far past the average,” she said arrogantly.

As terrifying as this was, truthfully, I expected her to reply like this. I had already found a YouTube video she’d posted last year referencing an older understanding of this diagnosis. Her temperament in this video was drastically different than what she was like one on one. She sounds like a concerned expert during her video, but it's only referencing five-year-old information. It’s like she never read the more current research data. It’s like she was an overworked, under-educated, arrogant person who wanted me to know that I absolutely would die from this diagnosis. And soon…

My legs shook the first time I went to my radiology appointment. I had no idea what to expect. It just looked so terrifying being in the basement of UCSF. If that wasn’t terrifying enough, I had to lay down on a very thin table as a sheet of very warm wax was placed on my face. It cooled down and became a map of my face's layout. Those five to ten minutes were crushing me till I was nearly in tears. I was very thankful my father was standing in the room with me. I felt so claustrophobic, I was shivering until the mask cooled enough to be brought off of my face. But then I had to go into the radiation room. The radiation room had a large metallic door that would seal up during each treatment…

Yup, that’s me.

I had to be down to UCSF every day of the week to get this radiation. Usually, I was in the machine less than the length of three songs. Most of the time I was laying like this, this machine was scanning me, making sure to fire the radiation at the intended places as closely as it could. The radiation itself was never more than a minute or two but this top device was terrifying as it slowly rotated around my head. There was a high-pitched electronic noise as it fired. It wasn’t very loud, but I couldn’t help but focus on it as it did its job. I could see a blue light in the sides of my view even when the device had rotated behind my head. My dad had the staff playing Beach Boy songs, knowing they’d bring me some joy as it scanned and fired on me each day.

Day after day after day I had to do this. It was strange how my first week started with me being the only person in the waiting-room. Was I the only one being treated? If I had a magic wand, I wish it had been that way.

I still remember the Tuesday of my second week. The waiting room was full and my appointment had been pushed back nearly an hour. It was horrifying seeing how many very sick individuals were there for their radiation as well. Everyone in the room just looked so ill, young people just a few years older than me, having to use the type of walker I was given but didn’t seem to need, the way everyone was missing all their hair and their skin looking so burned. I remember being shocked the first time I saw a young, very injured looking, 12-year-old boy. The way he walked and couldn’t control himself was heartbreaking. The way the staff had to group around him to move him to the radiation room was rather haunting. I remembered how the Halo theme song would begin playing when the metal door began to close for that little boy's treatment. That brought me to one of the strangest feelings I’ve ever had, that I just don’t have the words to explain. This little boy's eyes would lock up with mine, and he would stare at my face, his eyes opened so wide. His mother was demanding his attention and talked about why he needed to be there with a mask on and listening to Halo. Why couldn’t our eyes leave each other? He was 12, I was 37, it was like we were communicating a certain type of fear or hope. I just don’t know, and my memory of that little boy will never be forgotten.

Every day I’d be there, a man who looked like he was in his late 50’s was laying in a bed. His eyes were always halfway closed, and his mouth was always hanging open. He was so thin, and his skin was strangely child-like, like he’d been half asleep for so long his muscles had sundered. Several times a younger man, who looked like his son, was there for him. By the end of my the third week into receiving radiation, I remember seeing that man’s son leaving the room in tears. As I rounded the corner, I watched as they placed his father in what looked like a red sleeping bag.

At first, I was so confused. Is this something to help him with his radiation? The staff zipped up the sleeping bag past his face. As they started pushing the bed out, I realized this man had just passed away and this was a body bag. I can’t even explain how everything inside me felt like it was being pulled down to the earth so strongly. I had never seen or experienced anything like this ever before. And I had no idea that the next week, my father and I would see another person in a red bag be wheeled out of the radiation area.

What was there left to be hopeful about?

The next few days I came home sobbing, thinking I was going to pass away like that. If my Nero-Oncologist was expecting me to be dead in a couple years, what was the likelihood of surviving this? By now, my days felt so short ahead of me. Things seemed to get even worse the more I couldn't find any real hopeful outcomes for being treated for having had an Astrocytoma. How did I go from living a perfectly normal life to finding out I had a brain tumor? How had it been 99% removed but the Nero-Oncologist was forcing me to do this just to give me a little more time to live? How the hell could I live if I had literally seen a man pass away from this?

The staff, who had been incredibly supportive and very human with me, started saying strange little things to me.

“How did you get here today?” They asked me.

“I walked here.”

They all looked at each other so confused, “Do you live down the street?”

“No, I live down by Baker Beach.”

I’ll never forget the way they raised their eyebrows. I live just shy of 4 miles away. It often took me just over an hour to walk there and at least as much time to walk back. San Francisco is not a flat town; I was walking both downhill and uphill in both directions.

“Do you take naps every day before or after the radiation?” they asked.

“No. Couple of times I had to take a 45-minute nap though.”

“You’re an anomaly. A lot of the people who are receiving your type of treatment can’t walk here from that far away. They often are so tired they miss sessions with us, too. A lot of them need to be taken care of twenty-four hours a day. We’re kind of shocked to see you doing just fine.”

The first couple of times they told me things like this, I thought they were just being sweet or trying to help me with my anxiety. I remember once, I was half-way through having a nurse check my vitals, and she looked so surprised. “Wow, you’re doing great. Did you realize you’re doing really well?”

I thought she was just being supportive, helping me deal with my panic attacks or something. She continued, “Been taking these vitals for nearly thirty years down here. You’re doing so incredibly well. I hope you know that.”

I didn’t know if she was being serious or not. Just after that, I started having sessions with the leader of the radiology department. From the first conversation we had, he seemed to have a significantly more profound and beneficial interpretation:

“Everything about your tumor is incredibly favorable. I think you’re going to respond very well to all this treatment. Yes, in the universe it would be better not to have had a brain tumor at all, but given the circumstances the features of your particular tumor are as favorable as they get. So, I expect you to do as well as you can do under these circumstances. We don’t have twenty years of follow up on folks like you but, we do know that you’re more likely than not going to live a very long time. I also say that knowing ‘very long’ means something different for a person in their 30’s or 40’s as compared to someone 70 or 80. I expect us to be able to continue the pipeline of research, so if and when this tumor was to come back in a number of years, we would have options then that we don’t have now. I don’t use the word curable but you are having a very durable response.”

Not only was this more optimistic, it also made me realize something I had read on the UCSF website;

“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.”

I remember wondering if I was taking an experimental therapy that just hadn’t been explained to me. Believe it or not, I didn’t know how to ask such a question. Was I just terrified of the answer? Did I want to turn the light on in the dark? Was I afraid of seeming crazy to people after the research I had been doing? Or was the swelling of my brain while receiving radiology making it hard to talk to people? Through the research I had been doing, I noticed the standard of my diagnosis had normally been referred to differently. Google-y speaking, most of the papers referred to my diagnosis of “Astrocytoma, IDH-mutant, Grade 3” as something called “Anaplastic Astrocytoma”.

During one of the meetings with my radiologist, I asked him, “Why is my diagnosis not worded more traditionally as an Anaplastic Astrocytoma?”

I had read many terrifying papers from many different medical facilities about Astrocytoma from over the years. I wasn’t expecting what the Radiologist said next:

“Because of the mutations that you have. You have an IDH mutation and no co-deletion which makes you more favorable. You’re sort of a molecular, lower grade tumor even though under the microscope it looks more aggressive. When we looked at patients years ago we didn’t have the molecular understanding we do now. So now we understand why grade 3 is so heterogeneous. Why do some people with grade 3 not do so great and some people do really really well? The people who did the best had your particular markers, but we weren't looking for them before 2016. How we report it now gives you the best estimate of where you are on the trajectory and treatment. You’re more like a grade 2 than a historical grade 3. Your tumor grew incredibly slowly, the surgeon was able to remove nearly 100% and the radiation and chemo you’re receiving are designed to go after any leftover amount that may be there. It's not going to put your life at any risk any time soon.”

With all the terror I had experienced for the last number of months, now I was encountering a truly optimistic wave hitting me and washing me to a sense of understanding. Through all my research, there were long time survivors who had never had the tumor recur. There were people who were still alive and just fine from just receiving the surgery many, many decades ago. But in some of the papers I had read through, there were also people who were fine for years after surgery just to have the tumor come back. Some people developed an even harder version of the tumor, and some of these tumors had taken people's lives.

That's when I realized. Yes, this is an experimental therapy. Receiving a tumor surgery of nearly 100%, then receiving radiation and chemotherapy simultaneously, and then taking a triple dose of chemo for five days each month over an amount of time was the experimental therapy.

Right about this time, I found several Facebook support groups and was shocked to find out this type of therapy I was receiving was not universal. Many people around the world received no treatment of any kind. Others were receiving surgeries, while even fewer received the rest of the treatment I was receiving. I was shocked to hear people asking me why I had such an extreme treatment. Some people said they were even afraid of radiation or chemo from what they had read somewhere. I was shocked to learn UCSF was the number one research facility for treatment on brain tumors. They had been working on advancing radiation and chemotherapy for the last 20+ years and since then, the most long-term survivors of Astrocytoma were treated with UCSF research. It was shocking to know that UCSF was publishing its research to many different hospitals to advance their treatment to others with Astrocytoma. I’m not kidding, there are people who are still just fine 20+ years after just receiving surgery. Check out this survivors’ Youtube video hosted by researchers. I posted a question on the video, check out their response:

Genes ARE the known roles shaping the treatment for people with Astrocytoma.

My father and I were meeting with the radiologist for several weeks while I was receiving my treatment. I was being zapped with radiation on the left side of my face which was beginning to make it look a little swollen and red.

“Why is his skin looking like he got a sunburn during the day but looks like a black eye at night?” my father asked.

“I think it’s the radiation we’re giving you, Alex. I think, after surgery, there is just a little more space for fluids to rush around. That’s what you’re seeing, that it's a little more poofy.”

“So, this isn’t dangerous?” I asked.

“No, it's not. You’re not going to look this way for the rest of your life. When you’re 80 you’re not going to have a big puffy face.”

For whatever reason I found myself breaking into laughter. His statement felt so much more optimistic than anything else I had heard.

“I really appreciate the joke about living 80 years,” I said.

“It’s not a joke.” He smiled. “It’s a very well understood possibility. 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 to ten years.”

Wait, what? A vaccine for brain tumors!?

“What do you mean vaccines?” Why had I never heard of them with all of my “research”?

“Google Astrocytoma vaccines.” He smiled.

Retrospectively, I was seeing people post about abbreviations and slang words I didn’t understand on the Facebook support groups. I guess while I was reading and working through having an inflamed brain, I never thought to ask anyone what “Anti-IDH1” meant. Oh boy did I start to find out though:

My Radiologist wasn’t exaggerating at all. Evidently, many different countries are working together to design and test vaccines for many different occurrences of Astrocytoma. UCSF is producing one that is profoundly changing how the future of all treatments for Astrocytoma are being anticipated.

After realizing this I started asking questions on the Facebook Astrocytoma groups. I started receiving more direct links to information about the vaccines. As much as I can understand what I’ve read so far, the vaccines are showing truly incredible results. Evidently, the brain barrier makes it difficult to treat any brain tumors with anything less than surgery. But the new vaccines are very successful in treating tumor growth or advancement to something more malignant. From what I understand, the vaccine is literally capable of triggering an immune reaction that decreases or permanently “pauses” the tumor. In some of the research, these vaccines have even been shown to cause the immune system to remove the tumor.

Pretty profound, right? Why weren’t these vaccines popping up while I was searching? How very broken of Google to have The Amaranth Chronicles popping up under Astrocytoma search and not vaccines…

“You’ve done great, Alex.” My Radiologist said during our last meeting, “Everything has gone smooth. I don’t expect anything else but smoothness for the time to come.”

“Are we talking about the next few weeks or…?” I began to ask.

“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.”

“You really believe…?” I started to ask, beginning to break into tears.

“I really do think so.”

“That means the world to me.” I said, smiling and crying, “Thank you so much for saying that, it's touching. You’re an incredible human being.”

“Good things are to come, Alex.”

At about this time, I started to find incredibly unique people on the Facebook support groups. They were either going through incredibly similar challenges and knew better questions to ask their doctors or had been through an extreme of treatment like I was going through and were far ahead of me I started writing back and forth to these people and even speaking over the phone with a few. Even though there are things we’re anxious or challenged with, there is a communication not just of hope and some anxiety but of scientifically supported optimism.

The darkness, that blind terror, had been loudly washed over me in the last few months, but now it began to slip away and a much quieter truth began to whisper. I could hear it, at night, while I tried to sleep but couldn’t without leaving Pluto TV channel 150 on. There is a 24 hour, 7 days a week, TV show that plays on that channel. The show, and its sequels and prequels, have always led my curiosity, imagination, and my understanding of the future with a profound brightness. This one TV show among them had sometimes even scared me, in profound ways it has shaped my experiences. And it has been this way for many people across many generations. While not religious by any means, I find a certain spirituality in this show, and its sequels and prequels, that have been made for over the last 50 years. Frankly, they’ve led to my belief systems. I’ve watched these shows since I was a child with both of my parents, and they are the reason I moved to San Francisco, pursued a job in designing technology, and followed my dream of writing science-fiction. They are the reasons I wanted The Amaranth Chronicles to exist.

"It is the struggle itself that is most important. We must strive to be more than we are. It does not matter that we will not reach our ultimate goal. The effort itself yields its own reward."

Then something happened…

…And then the replies started…

( These were the first two replies. After the next couple of days, many, MANY more people started replying. That’s when I was sent better references to read. They’re aren’t exaggerating:

IDH Inhibitors - Benefit to early surgery - 35 years experience - What does quality of care mean - 40 Years of Progress in Medical Treatment - A journey towards a cure - Scientists May Have Found a Way to Treat All Cancers - Becoming a Neurosurgeon by Dr. Brian Toyota - The beneficial effects of metformin on cancer prevention and therapy )

… And then other replies continued…

… One reply gave me a an idea…

Right about this time, I had an idea buzzing around in my head. That's when my aunt called me and said, “You need to drop that bitch. Years ago, during one of my medical crises, my doctor told me I had five months to live. I’ve been fine for the last six years. Here, I’ll help you find a better Neuro-Oncologist.”

To be honest, I didn’t know I could switch Neuro-Oncologist. Maybe it's the way the world had raised me, but I thought I couldn’t hire a new Oncologist any more than I could “hire” a new DMV person. People who don’t have to challenge themselves to be better at their job, are the people that are uninformed and arrogant. But when I started researching other Oncologists, I was very surprised to see one doing interviews on “Brains for the Cure”. While he isn’t exactly inspiring or loudly optimistic, there was something very human about him. Every one of his videos it's like he’s nearly in tears. That struck me as being many orders of magnitude more human than my previous Nero-oncologist. This guy was capable of being scared. While I hoped he might be able to help me, I was very shocked the morning I was on the phone with my aunt trying to help me find a replacement. She found a patient rating page for all the Oncologists at UCSF that wasn’t hosted by them but by a 3rd party. Evidently the dark, arrogant, terrible bedside manner I had had was scored very low. But this new guy scored much higher. He had been hired by UCSF and to my shock, he was her fucking boss.

“Call the UCSF and say this,” my aunt said, before texting me word for word what to say.

So, I did. I was shocked how quickly his team responded and scheduled me for a meeting. While I was hoping for the guy to be the bold and heroic type, he was a bit of a nervous type like he was in his videos. But he did say this:

“I’m more than happy to take over your care. You can always reach out and talk to me. I tend to be as, you know, I think to address some of your questions. We as a field, we deal with patients with all sorts of different tumor grades. All the way from grade 1 which can be surgically cured, to grade 4, ya know, the stuff you read about online that is also terrifying, and you know you have to walk a pretty fine line. You don’t want to tell someone with a grade 1 tumor they’ve got a year to live, and you don’t want to tell someone with a grade 4 that they’re going to live just fine for fifty years. I think what's most important is yes, we have statistics, but you can look at a bunch of other surveys, they show different statistics. The key thing to know is that you are not a statistic. You’re an individual. So, you don’t know where you are in that statistic. All statistics have a bell-shaped curve. Some people do not do very well and that happens sometimes and then there are people who do amazing for a long, long, long time. It’s very hard as a physician to look at a patient, to look at an MRI, to look at a pathology slide and say, ‘oh yeah, of course, you’re right here like one of these.’ First of all, I used to think I could come close to being right, but I've been proven wrong enough times I’ve just stopped. But it is very true. It's not that it’s up to me. And that it's not really up to you either. There is something you could do, like crawl under a bed and just hide from the world and stop eating well. Then it’s not going to have anything to do with a tumor that's challenging you. You are going to be challenging you. Occasionally something like that happens but your outcome is going to be based on how well I do my job and how well you do yours. There are some people who want to know the data we can provide. We can provide data, but we try to be as realistic as we can because we’re just not at the level of being able to predict stuff.”

I mentioned to him that my radiologist said that I didn’t have to panic or believe that anything was going to happen anytime soon. That the vaccines and treatments were being advanced enough to make Astrocytoma a less and less terrible thing to treat.

“I agree with that,” my new Nero-Oncologist said, “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.”

For some reason, we went dead quiet after his last line. I sat there silently, feeling confused. For whatever reason, I couldn't tell what he meant by that. Was I to live the rest of my life to its fullest because my life was going to be shorter? Or was this some way of possibly suggesting they didn’t think my life was challenging, that it was just the way I interpreted things that would burden me?

“Not because you need to hurry up and live your life because something bad is going to happen,” he said, possibly realizing the type of struggle I was having. He began to laugh, almost realizing he might have scared me, “It's because you need to re-engage with everything you’ve been doing. You need to eat normally, you need to exercise, you need to work, you need to go spend time with friends and family, and you need to travel and those types of things. There’s no reason to wait. I mean I realize you have to wait to do anything for those six weeks of radiation because you can’t travel but you need to engage with everything. You don’t need to live the sick role.”

I was feeling rather perplexed as I walked home that afternoon. The emotional feeling was rather strange, not in any one direction though.

When I got home and looked at myself in the mirror, I was stunned to recognize the look on my face.

It wasn’t that I had ever felt this way before, but clearly this is understood to some degree as a common human struggle. It's common enough you can pay an actor to express this feeling I had while I looked in the mirror. And it dawned on me that I had seen a character, an actor, a human being expressing this feeling before in an episode of the show I left on every night from Pluto TV channel 150. It was the ending scene from the most popular two part ever written for any of the series. It was about a man not just having had his life challenged but having had his senses of reality changed. That now he may be alive and getting back to work while he was healing. That moment when he walked to the window, he felt lucky to live, but knew things would never quite be the same. Some of you may understand what I mean… “The Best of Both Worlds”

The terror and darkness I’d lived in for months had lifted to some degree. But there was something, something so strange still there…

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