Adventures in Radiation: Gamma Knife Surgery

You guys, it’s Mets Monday again! I promised you a description of how my gamma knife surgery went, and today I will deliver on that promise, complete with pictures! If you’re squeamish about people having screws drilled into their skull, you should skip this post.

We arrived at the gamma knife clinic at 6:30AM, which is a brutally early hour of the morning, especially when one isn’t allowed to eat or drink before the procedure starts. And yet I managed to be perky, because that’s how I roll. I mean, being a grouchy jerk when you’re having horribly crazy tortuous things done to your body is perfectly understandable. But when you put on a smile and ask the nurses how their weekend was, I mean, that positive energy sent out into the world has to be a good thing, right? Besides, it’s not the staff’s fault that I’ve got cancer, so why take it out on them?

So. There I am, at the clinic, in the wee hours of the morning, being perky despite a drastic lack of caffeine. This is me hanging out waiting for the show to get started.

Yeah, that’s my t-shirt that says My Oncologist Is My Homeboy. Because he is. 

Next, it was vitals and IV time, and of course, my very favorite thing, Ativan. Ativan works for nausea AND anxiety. Good stuff. See how calm and mildly stoned I look? 

Then came the screwing in the skull part. So, the way gamma knife works is, it’s a very very targeted form of radiation. So, it’s super important that they’re zapping the right spot, so they hit the tumor and not someplace else. Which is why they screw a metal frame to your head, and lock your frame onto the machine. The screws only go in a couple of millimeters, but I mean, they’re drilling in your skull. So they dope you up with fentanyl, and also inject stuff where the screws will go to make it so you aren’t in pain from the screwing. 

So there I am, with screws in my head and this big ass frame on my face. You can see how where they injected the numbing stuff, I’ve got like giant blobby swelling? Yeah, that’s normal for this procedure.  I joked and laughed through this process, and the nurse said it’s the first time she’s seen anyone do that. She kept saying what an easy patient I am. See? Perky.

Next they wheeled me upstairs for an MRI of my brain, to see if anything new had popped up, and to get a very very precise picture of the lesions in there. And THEN I was finally allowed to eat. And drink coffee. The Hubs (who was there for the whole procedure and took these photos–thanks Hubs!) brought me what you all probably know is one of my favorite foods: bacon.

He also brought me a mocha. I was so happy. 

Then we hung out for a bit–a lot of cancer treatment involves hanging out and waiting–and then it was zapping time! The machine looked a lot like a CT machine, and once I was wheeled in there, and my metal frame locked in place, they put on whatever music I wanted. I have a playlist that sounds like a cocktail party in 1963, and that’s what I chose to listen to. Except, I think maybe 5 minutes into the procedure, I fell asleep in the machine, which is apparently very common. I mean, they’ve doped you up on Ativan and given you fentanyl and whatever. Of course you’re going to fall asleep.

My zapping took about 75 minutes, 15 minutes for each spot. So, there were 3 spots in my brain that they were fairly certain were cancer, and then there were 2 spots (one of which was new on the day-of MRI) that were so tiny, they weren’t sure if they were cancer or not. But to be on the safe side, they zapped all 5. 

Then came the unscrewing. They held gauze on each hole to stop the bleeding, and then I took this selfie.

About five minutes after this, I’m laying there waiting to get ready for discharge, when I realize that I have blood gushing out of one of the screw holes in the back of my head. There was a lot of it, and the doctor came in and did the gauze thing again to get it to stop. While she was holding the gauze to my head, we started chatting and realized that we went to the same middle school–she was in 6th grade when I was in 8th grade. Seattle is truly the smallest town in the world.

And then, with the bleeding stopped and my vitals good, off home I went. We were home by 2PM, and one of the first things I did when we got home was make The Hubs pull out my middle school yearbook, so I could look up the picture of the gamma knife doctor, take a picture of it, and send it to my oncologist, along with a picture of my picture from that yearbook. Because I’m an asshole. I won’t share the nice gamma knife doctor’s picture here, because I’m not THAT big of an asshole, but here’s me in 8th grade. Aren’t those earrings epic?

Everything was going fine with recovery–I was a bit more tired than  usual, but not too bad–until my face started swelling up. Which is also a normal thing, as the drugs they injected in your skull start to drain. I looked like this.

WTF. Was I in a bar fight? Was I attacked by bees? The most annoying part was that it was hard to see out of that eye that’s almost swollen shut. Luckily, within a couple days it was better and I was back to looking like me again. I feel like with radiation, it’s a relatively simple procedure, like, this was one day and you’re done, unlike chemo that goes on for months, and it’s not like you’re puking after. But then, your face swells up like a balloon, or with regular radiation, you’ve got a weird shaped suntan that never goes away. Which is why radiation isn’t my favorite thing. I feel like it’s psychologically harder than chemo.

So, that’s gamma knife. This is the reality of metastatic breast cancer. It’s bizarre treatments and blood gushing out of a hole in the back of your skull, and even with all of this crap, it’s still incurable. I’m doing all this to buy myself time, but I’m still going to die with or of this disease. Today 108 Americans will die of metastatic breast cancer, even after having endured treatments like this. We deserve better. We deserve research that will find us a cure.

The Next Cliff

A few months back, I wrote about how being diagnosed with metastatic breast cancer was like falling off a cliff. And that I knew that there would be more cliffs to come–the brain mets cliff, the lung mets cliff, the liver mets cliff, and the “there is nothing more we can do” cliff. Well, one of those cliffs happened last week: the brain mets one. The story of how this has all gone down is quite the tale. You’re going to be horrified and then relieved and then sad. This will be long.

So, a few weeks back, I emailed my oncologist (whom you will have realized by now is one of my favorite people–he’s not just my doctor anymore, he’s my friend) and said “So, I’m having these weird dizzy spells, could it be from the new drug I’m on?” And he wrote back and said it could be, but would I mind going to have a brain MRI out of paranoia? And I said, “Sure” and I had that MRI on April 3. My oncologist got the results almost immediately–everything looked normal. Hooray! We chalked the dizzy spells up to the palbociclib and went back to normal life.

Fast forward to April 13. My oncologist tells the team at the hospital where I get care that he is going to talk about my case during their tumor board that week. So, the radiologist who initially looked at my MRI took a second look, and low and behold, there are four small spots on it that she missed initially. She puts a note into their electronic records system that says “On further review, oh look, it’s brain mets” and says she left a voicemail not for my oncologist, but another oncologist in his office. Which, A, you re-read the scan and decided it’s brain mets and you just leave a voicemail about it, with someone who isn’t my doc? Are you kidding? And B, my oncologist’s office has no record of receiving that voicemail.

Needless to say, my oncologist was livid when he found out. If there hadn’t been a second look at that scan, the most likely scenario is that the tumors would have continued to grow and I would have developed headaches in a couple of months, and my oncologist would probably have said “Well, we just did a scan, so I’m sure you’re fine.” And I would have been screwed.

He began putting together a plan for treating me, along with the radiation oncologist I saw last year, and they put in a referral to a gamma knife clinic. Before my oncologist could call me to tell me I had brain mets and talk to me about the plan, I get a call from the gamma knife clinic. It went something like this:

“Hi, I’m calling from the gamma knife clinic, your radiation oncologist put in a referral for us to see you based on your recent MRI.”

“I’m confused, my recent MRI came back normal.”

“Uh…who talked to you about your scan?”

“My medical oncologist. I haven’t talked to my radiation oncologist since last fall.”

“OK…well…let me see if I can figure out what’s going on, and I’ll call you back, OK?”

“OK, thanks, I guess?”

At this point I send an email to my oncologist, with the subject line “Gamma Knife Clinic WTF” explaining this conversation. Within an hour, I get a phone call from my oncologist, apologizing profusely and explaining the situation. We set up an appointment for the following morning to talk things over. 

At this point, I freaked out. I took a xanax. My girlfriends came over to prop me up. This was landing at the bottom of another cliff.

The next morning, I woke up more calm. The Hubs and I dropped the kids off at daycare and went to buy donuts for the nurses, because we’re shameless suck-ups, and went to the appointment. My oncologist comes in the room and the first word out of his mouth is “Fuck.” (This would be one of the things I like about him–he swears. We’re kindred spirits.) He said he wouldn’t blame me if I decided to go somewhere else for care, he was so horrified about how all this went down. And I told him, “Are you kidding, none of this is your fault. If you hadn’t brought my case up at the tumor board, I’d be screwed. You’re the one cleaning up this crazy mess.” And then we talked about the plan.

So, step one is, I meet with the nice folks at the gamma knife clinic, who were extremely apologetic about their roll in this mess. That happens today. I’ll probably have either gamma knife or cyber knife surgery this week. It isn’t actual surgery-surgery; it’s using a very precise form of radiation to zap the brain tumors. Gamma knife involves screwing a big metal frame to your skull. With cyber knife, you’re in a mask thing that gets bolted to the table. Both are one-day outpatient procedures with few side effects.

Step two is, my oncologist wants to move that PET scan up from next month until now. Let me get sciency for a minute: so, the thing about your brain is, a lot of drugs don’t make it to your brain because of something we call the blood-brain barrier. This is usualy a good thing, because your brain is sensitive, but the problem in cancer is, drugs that may be working perfectly well in the rest of your body don’t ever make it to your brain. So, it’s possible all the drugs I’m on are doing just what they’re supposed to in the rest of my body, but just aren’t reaching my brain. Or, perhaps they aren’t working at all on me, in which case we need to change things up and head back to chemo land. A PET scan should tell us which is the case. 

Both my oncologist and I suspect we’ll see more progression on the PET. I’ve been having abdominal pain that may or may not be liver mets–and we both just have a feeling that the hormonal therapy isn’t working. PerhapsI’m standing on the edge of another cliff right now.

My oncologist said he’ll try to go easy on me with the chemo, but I told him fuck that, I’m balls to the wall on this stuff. He was like “I never have patients say that.” And I was like “I’m a mom of two small kids. It’s what moms do–unpleasant things, for the sake of their families.” Honestly, just taking some pills and hoping for the best was making me crazy anyway. I’ll feel better knowing we’re killing some roaches again.

So. What’s life like at the bottom of this cliff? You know, having fallen off the big cliff already, this one isn’t so horrible. It’s actually more like tripping than falling off a cliff. It hurts when you scrape your knee, but the trees around here are still quite lovely.