The Mappening and the Plan

One of my co-workers came up with the title for this blog post, but chooses to remain anonymous on this public forum. 🙂

I’m behind on the blog, so let me catch everyone up!

Friday last week was the Mappening – when my radiation oncologist mapped my insides with a CT scanner, so that they could design a treatment program for me that maximizes the amount of radiation to the places we’re targeting, and minimizes the amount of “scatter” hitting my heart and lungs. Here are some of the interesting portions (at least to me):

* Getting me perfectly lined up with the machines the same way each time is really critical. So they placed four tattoo dots on me, and then use lasers that are mounted in the ceiling to draw the straight lines to connect them. So I have my first four tattoos! They are all lame. One is smudgy and looks like dirt.
* I am not good at staying perfectly still. The mapping session took about an hour, and I hated it.
* They make a mold to help make sure you stay in the same position each time. It’s not comfortable.
* How you hold your breath impacts the position of your heart within your chest. So part of the program is to find the amount of air I should hold in my lungs to minimize that scatter to my heart. Once this is set, they mount a little device in my visual range that keeps track of my breathing – when I breathe in, a ball goes up on the screen, when I exhale, the ball falls down. They mark the perfect amount of air with a line, and my goal is to hold my breath at that amount. It’s like the world’s stupidest video game. Probably also the most expensive.

Anyway, that was Friday of last week.

Today I had my first actual radiation session and meeting with the oncologist to discuss the plan. But first, I waited a long time in the patient-only waiting room. That’s where I found this:

It’s a knob for setting your mood! Note that I have turned it way down, to reflect my mood after having to wait a long time. (It actually controls the harpsichordy new agey plinky music in the room, which I disliked, and since I was alone in the room, I felt okay about turning it off.) Please note, the MOOD switch is apparently trademarked…

Then there was a long time where I was forced to lie in the machine and stay very, very still again, while they did all their QC checks and imagery to make sure that the program that delivers my radiation was correct before they ran it. Then they ran it. So I’m all radiated now!

A nurse spent a bunch of time talking about side effects. Although I mostly focus on the fatigue that may take me out of work or otherwise impact my life, the nurse mostly focused on radiation burns. These sound dreadful. I was taken aback when she said the burns would likely continue to get worse for several weeks AFTER my last treatment. This seems a bit unfair. But okay, noted. They gave me a ton of samples for skin care products and instructed me on where I can buy more of whichever I like best. (Yay, shopping.)

They also want me to consume a ton of protein, because my body will be working to replace all the healthy cells that are killed by this process. That also surprised me, because as a vegetarian who doesn’t get much exercise, protein hasn’t been a huge factor lately. So if you see me drinking weird protein drinks, this is why.

Finally, I saw my doctor and she showed me all the imagery of the inside of my body with the radiation mapping in layers on top. That was kind of neat. And the good news, I’m in the five-week protocol instead of the six-and-a-half week protocol. I can’t remember (and I’m too lazy to look) if I blogged that I didn’t qualify for the four-week protocol, but that was already known. So five weeks.

I’ll be going every single weekday, and my schedule is a bit of a mess for the first two weeks. Then it will settle into the same time every day, which will simplify planning.

I think those were the highlights and lowlights. And even though I have no idea how I’ll feel through this process, one thing that I am excited about is that there’s an end date. I will finish radiation therapy on May 1st. And after that, it’s just oral drugs – one to keep the estrogen fairy away, and possibly a research drug if I am placed into that study group. That seems pretty simple compared to chemo or daily radiation. 🙂

As always, I continue to appreciate all the warm wishes, unicorn magic and support I get from everyone. Could not do this alone.

Kate