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

"Science still knows practically nothing about the real nature of matter, energy, dimension, or time; and even less about those remarkable things called life and thought. But whatever the meaning and purpose of this universe, you are a legitimate part of it." - Gene Roddenburry

Thank you to everyone who read and commented on my blog post from last month; “My Astrocytoma Experience”. I’m just so incredibly inspired by each of you, you’ve led me to so much more optimism and ambition. I am so thankful so many of us have been able to “meet” on Facebook and have had so many truly shaping conversations. I never knew I could meet so many incredibly unique individuals who had experienced something similar to some degree. From the fear to the incredible hope, I didn’t realize I wasn’t alone. I’ve got so much more to tell now. Something so profound has unfolded since my last post, I just had to share this.

Even though last month’s post ended with a type of “to be continued”, part of me is still a little shocked at what happened next. Just days after I posted my blog post on the Facebook groups, my doctors began to stop messaging me one by one. If I wrote my new Neuro-Oncologist a question, I didn’t receive replies from him or his staff. If I messaged the group mailing me my five days a month chemo, they too wouldn’t respond. I didn’t know how to interpret this. Why did it seem like my doctors were disappearing? Having met so many Astrocytoma Survivors on Facebook, I was shocked how few of them had ever experienced their doctors going quiet. Had they read my blog post and were now avoiding me? Was I being punished somehow?

If you remember from the previous blog post, my original Neuro-Oncologist was telling me I might be “lucky enough” to live between seven and eleven years. That's while the surgeon and radiologist had been significantly more optimistic. Why was everyone going quiet right now? I wanted to believe they were just busy treating people. I didn’t want to believe this meant something was wrong. Thankfully, the people who had scenarios like this happen were incredibly knowledgeable and very helpful. Apparently, there is something called “Case Management and Social Work”. I had never heard of this before:

“Social work case management is a method of providing services whereby a professional social worker assesses the needs of the client and the client's family, when appropriate, and arranges, coordinates, monitors, evaluates, and advocates for a package of multiple services to meet the specific client's complex needs.”

In other words, its a government funded program to get a person to help you deal with your doctors. I had just begun to research them and had even left a couple messages at the UCSF Case Management and Social Work when something happened I never expected. Its not just the “what” that happened, it was the timing and the “how” that happened that has blown my mind. Check this out:

So inspiring, right? What are the chances of this happening?

RIGHT when I pressed enter to post this, I received a phone call. I answered it, just thinking it could be a spam call, but no, it wasn’t. To my hope it was in fact a Case Management and Social Worker, but what I heard next I would have never anticipated. It was strange hearing her at first. She was significantly older than me and mentioned she had been in a surgery for a medical condition just a week before. She explained to me that she understood how doctors can just disappear sometimes. She then explained that my insurance, United Health Care, had assigned her as the person to help me. To my amazement, my doctors had disappeared on the insurance providers as well. Apparently this was because of some new paperwork around my diagnosis.

“You’re now listed as the least likely fatal survivor of Astrocytoma.” she said, reading from the paperwork that had been sent to her, “You’re a current anomaly defined by the research foundation. You’re new Neuro-Oncologist would prefer to increase the number of MRI’s you’ll receive this year because the science involved is going to push the researchers forward.”

“Wait, what do you mean?” I asked, feeling a bit confused.

I had read my diagnosis report and even posted the highlights in the last blog. Here they are again:

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.

I had read about the IDH1 being a fairly common gene that significantly slowed down the growth rate of the tumor. But I didn’t understand what the other genes or what the other writing was about.

“What does ‘least likelihood fatal survivor’ mean?” I asked.

“Even though your labeled as a Astrocytoma Grade 3 your genealogy is understood to be the lowest possible risk of anything. The ATRX gene is very rare and understood to increase the effectiveness of radiation and chemotherapy. You’re TP53 gene is understood as one of the genes that can cause this type of tumor but is also known to be one of the lowest risk. The IDH1 is a gene set that causes the tumor to grow very slowly. You’re Ki-67 percentage is typically how they evaluate the growth rate of the tumor. You have the lowest they see. There doesn’t seem to be any infections or necrotic material of any type either. You have the closest to one hundred percent of resection, basically removal, of the tumor. You’re just incredibly unlikely to have this challenge your life at all.”

I just couldn’t believe what she had just said. I was standing there, with this call on speaker phone in front of my dad. He sat there, on the couch casually smiling up at me.

“Apparently, they’ve been assigning six months of the chemotherapy before but now they want to extend it for a year. That is because its least likely to have any sort of side effects for you but also to treat whatever tiny amount of the tumor that could still be there. They believe the year of treatment will advance their research because so few people with your set up has been given a year of treatment before.”

I knew they had only understood the genes for Astrocytoma since 2016. And I could still remember when my radiologist said:

-“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.”-

If this was all true, why were my doctors ignoring me and the insurance company? Why did my first Neuro-Oncologist tell me I was going to pass away in the next decade? Why did she send me to go chat with someone who would help me end my life?

“Sorry, let me be more clear.” this social worker said, “This break down has just been added to your diagnosis. Apparently, the research team has been having conversations on how to treat you.”

“What do you mean?” I asked.

“Well, according to them, there has only been some patients that had their tumors as closely removed who also had your genes. Half the team thinks you’re fine to just monitor. The other half see a reason to increase your chemotherapy from six to twelve months and increase the rate of your MRI’s for the first couple of years because it will advance their science.”

“What do you mean advance their science?”

“There’s been twelve people like you. You’re an anomaly. Of course they want more data of someone like you. They’re just wondering if you will want to do the year of chemo and the more often MRI’s for the first year.”

As incredibly inspiring this was sounding, it was also starting to explain the conversation I was having when they disappeared. I’ve received one MRI scan since I completed my radiation. It was at a brand new building in the research center that was so loud and terrifying. When the staff ended the scan and pulled me from the machine, they were panicking I was having a seizure, I had to raise my voice telling them I was having a panic attack from there horrifying experience. The machine was so claustrophobic and so shockingly loud even though I had headphones on, I was asking if I could be transferred to a different building in the future. Later that afternoon, I had sent them a list of MRI machines that were known to be significantly quieter and asked if they had any. They mentioned something along the lines of knowing of one but didn’t know if it was free at all. That’s when they all started vanishing and not returning emails or phone calls. I mentioned this to this social worker who had just called me. I can’t remember if it was me or her but we realized that now I was in a negotiating place. If they want me to receive more often MRI’s and take six months longer Chemotherapy, then I can be a negotiator.

”Yup, let me three way them” the social worker said.

The social worker began talking with one of my new Neuro-Oncologists assistants, “Yes, I know Alex wanted access to our better machine but we kept calling him back and he doesn’t answer the phone.” she said, not even knowing I was on the phone.

“That’s bullshit.” I said, feeling shocked that someone would lie about something like that.

“Alex, quiet down. We’ll get this.” the social worker said.

The assistant immediately agreed to get me set up with not only the quieter machine but one that is significantly faster. Evidently its literally just in the basement of the building my new Nuero-Oncologist is in. By the end of the call, I thanked this woman for having helped me not only understand what was being added to my diagnosis, but for getting me set up with a new MRI scanner. That I was just so surprised she called me out of the blue when she had.

“What were the chances of this?” I asked my dad who was sitting there listening and smiling.

“Its what I’ve thought from the beginning.” he said, “With how fast these doctors have been moving since they saw something on your first CT scan I figured they’ve just been saying ‘ oh look a goodie for our science.’”

Dad was right, he had been that optimistic from the moment I called him from the ER last year. He had mentioned many times before this that he’s not under the impression my life was going to be shortened. His interpretation of my first Neuro-Oncologist was just that she was overworked and had no idea what she was talking about. That I was just a piece of paper for her, not a person being treated so advancely with genes that were so rare. Dad had been telling me this from the beginning but I just didn’t know what to think with all of these extremes happening simultaneously.

“Just the chances of making that Facebook post, about another strange element going on, what are the chances that…”

My phone began to ring again before I could finish talking. It was the company Gusto, the cloud-based payroll system. They are the ones who pay me each quarter for the number of copies of The Amaranth Chronicles: Deviant Rising that sell. Not only did they need my new bank account information to send me royalties, but they were explaining to me that previous payments had not been received by me. By the end of this phone call I was so surprised by another strange alignment of incredible news. The book Chris and I wrote was selling more copies these days then it had since after the month it came out.

Right when I hung up, I sat down on the couch next to my dad, still strangely overwhelmed but in an impossibly positive way I had never felt before. It was so humbling in a way I had never experienced before.

Even though I’m not religious, but to some degree spiritual, I could suddenly understand why some people think God was just waving his hand, taking the suffering away from me. Honestly, it did feel just so strange that these unlikely events were seemingly scheduled by someone trying to send a message somehow.

That night I had to head home. My dad walked with me over to the BART subway system I use to go back and forth between our homes. Even though I was feeling so inspired and frankly, living again, I was still confused by the challenges that had been a part of the last six months.

"Why did the first Neuro-Oncologist believe I was going to be gone within the next decade?" I asked, hypothetically.

“Like I’ve been telling you, she's just terribly overworked and didn’t know what she was doing.” he said again, smiling.

For whatever reason, that's not the way she seemed to me over the last six months. With how naive this sounds, she seemed like an arrogant expert to me, just focused on something extreme for some reason.

Even though things were looking up for my diagnosis, not everyone in my life mirrored the same positivity. There is a part of me that thought I’d never understand why this was but frankly, I started to ask questions on the Facebook groups. With how many terrified newcomers had come to the groups, to how many horrified people have had recurrences not knowing what to expect. I had to ask a different question. I started by simply asking, “Are there any Trekkies here?”

I was so surprised by what I learned next. I’m just going to need some time to process it before I post it. Stay tuned…

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