I returned home on a fine Sunday evening. I wasn’t allowed to wash my hair until four days after my surgery, so I had to wear a cap in the shower as I used a scrubbrush and some Duke Cannon gritty body wash to remove leftover EKG sensors and the adhesive I left behind.

My family watched me like a hawk those first couple of days. They’d moved me into the guest room where, I assume, my screams for help would be easier to hear.

The next morning, I woke up, got dressed, walked downstairs, had a cup of coffee, sat outside and enjoyed the weather. Nothing beeped at me. It was lovely.

That night, I was upstairs in bed when I stood up, apparently too quickly. I don’t remember how it happened; at one point I was standing up, my hand on a piece of furniture, and the next, I was stumbling backwards. It turns out my screams for help were easier to hear. When my folks came in, I was sitting up on the ground, with a fresh cut on my ass from where I’d gouged it on a nightstand. I started taking my time standing up after that.

I have this app on my phone called Patient Gateway where I receive messages and appointments from the doctors. Before my surgery, Dr. Arnout told me not to look anything up on the post-surgery reports.

What did Professor Idiot do? (That’s me, I’m Professor Idiot.) I looked it up.

The word I should not have looked up is Glioblastoma, because that’s what I have.

Here’s the thing. You know how you go to WebMD and look up your symptoms and no matter what they are, they tell you you might have some kind of cancer?

When you have glioblastoma, every site is WebMD.

Hell, if you look it up on Wikipedia, they will happily give you the average survival rates. Generally, you get the impression that you might as well go buy a coffin and save everybody some time and trouble.

This one-size-fits-all diagnosis from the internet pissed me off so much that I am working my own page; glioblastomahope.com, to collect stories from reliable sources about surviving glioblastoma. So maybe the next poor sap who gets this diagnosis won’t be as scared as I was. (It’s not up yet. Squarespace is being difficult.)

It was hard not to feel hopeless for a while.

This next part of the story is going to be a little muddled, because I can’t remember the dates. Patient Gateway isn’t too helpful on this point. All I know is, I made several visits to Dana-Farber at the requests of Dr. Arnout and my new oncologist. We’ll call the New Oncologist Dr. NO.

I believe my first visit was to see Dr. NO and their team, who started talking to me about clinical trials. This I wasn’t sure about, but I knew I wanted aggressive treatment. Hit me with the radiash, baby, I’m ready for it. Gimme those gamma rays. Hulk me up.

The next day—or perhaps two days later—I had a post-surgery meeting with Dr. Arnout where I had my stitches out. (Yes, I brought both these doctors cookies. No apocalyptic failures this time.)

He showed me my post-op MRI, and the great big hole where the tumor used to be. I needed this like I needed a hole in the head, literally, amIrite people?

I also learned that as a result of the operation, I had something called mid-line shift. My Brain was no longer centered, but would readjust itself in time. So that’s a fun image. My ragged-ass brain with a big hole in it rattling around loose in my headbone with its new titanium plate.

Now, one thing we tried to get across to the doctors is that it takes us four hours to make a round trip to Boston and back, and I was not yet cleared to drive, so I couldn’t do it myself. This meant a lot of leaning on my family; who were happy to do it. (Not “happy,” exactly. “Willing” to do it. Maybe “Resigned” to doing it. I mean, we’re talking four hours in off-Cape Boston traffic in summer here.)

However, I soon had a call from Dr. NO asking if I was interested in taking part in a clinical trial. I asked her to send the paper for me to sign. However, because of lucky special magic reasons, the papers could only be signed in person. This was my first encounter with the vagaries of the clinical trial and how weird the sponsors can be.

This time, I enlisted my…I just tried to look up the proper term for how we’re related and came up snake-eyes on that roll, so I’ll just quote Douglas Adams again and call him my semi-cousin, Brad, who is married to my cousin. Brad’s a professional smart person who could understand whether this trial was going to be good for me or not.

The meeting was for 3:00 pm. The doctor didn’t see us until 4:15 or so. So I was not in a great mood when they started the meeting and didn’t even reference how late they were. Like, I know you were doing important doctor stuff, but acknowledge that you’re over an hour late.

The Doctor discussed the trial and told us I’d be able to receive treatment at the Cape Cod Hospital with a few exceptions. I eventually signed off on it; I can’t say I ever felt particularly strong about this. I just wanted to get rolling. Immediatly following this, I had to get an EKG which was administered using some kind of portable unit which shut down many times. Then I had to give blood. Always the blood with these doctors. Then they demanded urine. I tried to tell them I hadn’t had a drink in hours. They sent me in to the bathroom heedless of my cries. Somehow I managed to squeeze some out. Life finds a way.

Next thing I knew, I had another appointment in Boston to receive some kind of scan at 9:15 in the morning. ...then an MRI at 3:00 PM. So that was gonna be fun. Maybe I could sneak out and go see the extended cut of a Lord of the Rings movie in between.

The next appointment was with my radiation doctor. Let’s call them Doctor Rad.

This was at the Falmouth hospital. Falmouth exists in a non-euclidian space on Cape Cod where it is a huge pain in the ass to get there no matter where you’re coming from. You must take back roads and use GPS to get there. The highway that reaches through the Cape will not bring you there. Which is a shame, because they just got an Aldi’s.

Through dangers unknown and hardships unnumbered, we made our way to the Falmouth Hospital and met Dr. Rad, who laid out how my treatment would be administered. Pretty straightforward stuff. We’ll get into that later.

I had a few days off from Doctors when Dr. NO’s team called to inform me that the sponsors of the trial would not allow me to take part unless I received all of my treatment at Dana-Farber every day for six weeks. Since I’d explained that we couldn’t commute to and from Boston every day, they took it as read that I was dropping the trial and my appointments began to disappear from Patient Gateway. My folks started talking about renting an AirBNB in Boston; but frankly, at this point, I’d had an assful of this trial. After a couple of days, I spoke with Dr. No; they told me instead of doing the trial, I should start my treatment as soon as possible. This was fine with me.

Sometime in between that, I went to the Cape Cod Hospital to be fitted for a mask. So much of this process involves me laying down and being restrained. Here, I lay down on a CAT scan bench and had a roll of plastic tightened over my face. It was like the cheap plastic fencing you see around constriction sites.

Did I mention it was hot? Physically? Yeah, a faceful of hot plastic pulled taut across my head. I then spent the next twenty minutes or so getting scanned while the plastic slowly molded itself to my face. Example below.

This was not as bad as the MRI, but it wasn’t a bowl of ice cream either. The entire time the plastic was tightening, it felt like someone was poking me in the face. Eventually, I was released from this durance vile and set free. Soon I’ll return to start getting irradiated.

I have been warned that as a result of the radiation, I would lose hair in the spot where I was getting zapped. Since I didn’t want to wake up one morning with a giant hank of hair on my pillow, which seems like it could ruin your whole day, I went and paid a professional to make me look like Mr. Jerome Howard.

Mirrors are still a bit startling. This was a terrible time to lose my only hat.

My first real session followed the next Tuesday. I am on two different sets of pills. One’s a nausea pill. I have to take this an hour before I take the chemo pills. Now, they swear to me these chemotherapy pills aren’t radioactive, but I also have to wash my hands before and after I take them. And I can’t keep them with the rest of my meds. They are, quite simply, suspicious. They lurk, these pills.

So after I got all pilled up, I headed up to the hospital for some radiash. Somehow, the mask had grown tighter in the intervening time, leaving me with a Ben Grimm-esque pattern on my forehead.

Two nurses secured me to the table via my mask. With the radiation gizmos swinging around my body, I felt like the guy in The Pit and The Pendulum.

The next day, I hit upon an easier way of enduring this ; I popped two of my don’t-go-crazy pills right before lying down and asked for some music. The staff were happy to allow this. With my internal anxiety dialed down to zero by the meds, and something to distract me, I spent much less time worrying about how many ways there were to get Final Destinationed in this room. Since implementing this procedure, everything’s been going swimmingly.

So… that’s it for the next few weeks. I hope to return with good news around November or so.

My Dumb Brain, Part 4, In Which Lots of People Work On My Bad Brain