Tuesday, February 3, 2015

Gamma Knife Experience

I figured I should probably talk about the experience before I forget- although really I could just blame it on my brain tumors or the fact that I just had radiation on my brain.

It really was completely and totally as advertised. I spent too much time looking at cancer forums and trying to reassure myself that it was going to be OK. But that is part of the process- that is why forums and support groups really do provide an invaluable service during these experiences. Sometimes you just have to hear from someone else that they survived. And sometimes the forums can be a scary place because it is a cross section of the optimists and the pessimists and the optimistically realistics.

I think any time you mess with the brain- things could happen. It is such an integral part of who we are. You wait and wonder- hoping that you are wondering for nothing. You wonder what you should be doing in the case that everything changes and you superstitiously try not to do anything in hopes that it won't.

I was pretty terrified. The jittery nervous making hugely inappropriate jokes kind of terrified. Better living through pharmaceuticals kind of terrified. Knot in stomach, jumpy.

Waiting with the Tools.
We travelled to town. The gamma knife facility is the only one on the island. We walk in and are introduced to my nurse for the day, Trisha - which I take as a good sign since one of my best mutant buddies is Trishia. I like Trisha a lot- especially after she gives me 5 mg of ativan- to take the edge off.  It helps the screws and head gear that are sitting around me feel less ominous. 
The Gamma Knife Head Frame

Screws and syringes of numbness.
We sit for a few minutes, letting the ativan work and the docs come in and say hello. They had already been reviewing my MRI and discussing the plan.  In the few weeks between MRIs, a new, 3rd tumor popped up. It is small, but in my frontal lobe. I can tell this development freaks Phil out. This is a fast moving ballgame we are in. It's hitting him. Wish I could share the ativan- he looks concerned, I just smile so he knows it's gonna be ok. Better it shows up now and we zap it. 

They explain the process to me again. Dr. I is very generous with the novocaine he injects into where the pins will hold the frame on. 2 on my forehead and 2 in the back of the head. I can hear the weird crunching as the needle punctures the tissue, a little stinging and then numbness.  He starts screwing the screws in and I feel the pressure of it- but no pain. They warned me about the pressure and assured me it would pass in a few minutes and it did. 

 They spent a few minutes making sure the placement is correct and aligned.  This is pretty important so that there is a point of reference externally and internally.
 Once I'm officially screwed in- we go down to CT.  They do a brief head CT which is then overlaid on the detailed MRI I had earlier in the week. This helps them visualize all of the structures, tumors and frame placement in order to program the specific coordinates into the gamma knife machine.

We were told the planning can sometimes take hours, but it really felt like mere minutes. It's one of those strange moments that you wonder which is worse- the waiting or the wondering if they should take a little bit more time to plan. They assured us they had done the majority of the planning before we got there- once they had the CT data- it was pretty easy.

We headed down to the basement- to a big open room with a skylight. It's amazing how such a thing like that eases your mind. Well that might have been the ativan.  I did really feel a bit like Dead Man Walking.  But I took lots of deep breaths as they fastened my frame to the machine and tried to get comfortable. I had to be there for 65 minutes.  

 Through this door is where the magic happens.
 I was really glad that the back screws were numbed up good for this part- since my head is resting on  them. I felt a little pressure but the table tilted a bit to support my back, so it wasn't uncomfortable.
 I hoped that I would sleep. But I was awake the whole time. It was noiseless except when the machine changed coordinates. I got to listen to music- I just asked for something relaxing- the last thing I wanted was easy listening and to hear a song that would turn me into an emotional wreck. They chose classical. I probably would go more new age/spa in the future- classical scores tend to blend together and I couldn't gauge how long I'd been in there. Every now and again my back would try to spasm and I'd just breathe through it trying to be super still as I visualized the tumors going up in poofs and the healthy brain being protected.

My friend Cheryl said I needed to make sure I brought my spider along with me. Another friend said he envisioned it like Cerebra from X-men- actually pretty close. Phil said he preferred to think of it like laser cats- shooting the tumors.  I didn't feel anything but numb, yet I know that like a sunburn- radiation effects can take some time to brew. The idea is that with how specific the gamma knife is- the tumor would mostly feel the effects- not the healthy tissue.

When I was done, they unscrewed the frame. That was a surreal feeling.  One of the radiation oncologists gave me a written prescription for steroids. Sometimes the brain swells in response to the tumor dying. Phil looked at the piece of paper and looked at me- what do I do with this? I laughed. You take it to the pharmacy and they give you meds buddy- if you want to have the full experience we can take it to walgreens on the way home.  I still have some "in case" steroids- so we can wait til our next trip to the hospital to fill the prescription.

The holes healed really nicely. I had to keep the bandages on for the night, but I was surprised at how small they were. Bella and Lily were both nice enough to point out that I had zits that were much bigger than the holes. Thanks girls. I felt ok after. The screw hole areas were a little swollen and uncomfortable for a couple days, but nothing major. I had a few minor passing headaches and I notice if I get tired or stressed things feel worse- so I try to avoid that. 

The spots on the back of my head are still sensitive.  I don't lay on them because it feels kind of like a sunburn. But all in all I feel Ok.  I started the Arimidex last week and so far haven't really had too many side effects. Some joint stiffness and GI stuff. I had my new chemo, Kadcyla yesterday and it was entirely uneventful- which we like. It was an hour and a half infusion, but in the future it should only be about 30 minutes plus however long it takes the lab to come back with bloodwork.  I will have to watch my blood counts and for bruising. The nurses say they see low platelets a lot with this chemo. But they also said they have quite a few ladies who have been on Kadcyla for years and doing well. I would very much like to be one of those ladies. 

1 comment:

  1. I am in awe of you. What a trooper your kids have for a mother. Continuing to pray for you, your family and your medical team.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)