My goodness, it’s been a minute — four months, actually! Despite that gap, it’s important to me to keep documenting my cancer experience. So here’s what happened after chemo.
Consultation
Getting set up for radiation is a multi-step process. First is the initial consultation, where the doctor walks you through your options and you decide whether or not to proceed. Obviously, I decided to proceed. Radiation never really felt optional to me. I was always going to do whatever the docs recommended to help get rid of this cancer and, hopefully, keep it from coming back.
As I mentioned in my last update, I had my initial radiation consultation on January 30. My doctor was very nice and she had sparkly hair, like strands of tinsel. I asked her about it and she said it’s called “fairy hair.” We talked about how once my hair comes back a bit, maybe I could get that done.
She asked a lot of questions about my cancer experience, especially about my surgery. I told her the surgery had gone swimmingly and everything was healing up nicely because my surgeon was amazing — but that I was still having some lingering issues with my breast. Mainly, it’s a touch pinker than it should be, still a bit painful and the nipple doesn’t respond to stimuli (like cold) the way it used to. She examined me and explained that my breast is still swollen internally from the surgery and that’s likely causing those symptoms. Apparently that’s normal and just takes time to resolve. Can you believe there’s still swelling seven months after surgery?
The rest of the appointment involved the doctor explaining radiation in general and what my treatment would look like. Radiation uses high-energy rays aimed directly at the tumor — or, in my case, the place where the tumor used to be. I was prescribed 20 radiation sessions: 16 of them were prone (lying on my belly) and the final four were done on my side.
Doing most of the sessions in a prone position helped protect my heart and lungs. Since the breast hangs away from the chest wall in that position, the radiation can target just the breast without affecting anything behind it.
Simulation: Part One
Next comes the simulation appointment — mine was on February 7. During this session, the techs have you lie on the table and they adjust your position until it’s just right. Then they take photos, give you several tiny dot tattoos and mark you up with a Sharpie. The tattoos are done by hand with ink and a needle — not a tattoo machine. Dip, stab. Dip, stab. I love my little dot tattoos and thought it was neat to experience tattoos being done that way.
The Sharpie marks are covered with durable waterproof stickers to help them stay in place for the duration of treatment. Once you’re marked up, the techs run an initial scan. In my case, somehow my breast was touching the surface under the table during the scan, so I got a call later that day and had to return for a redo scan on February 10. That scan worked, and I was cleared to start radiation.
Radiation
I began radiation on February 17. The first day is a dry run, and all subsequent sessions include radiation. At Johns Hopkins, they give you an orange card with a barcode to scan each time you arrive, so you don’t have to check in with the receptionist. I love that system — saves time and effort for everyone. (They also validate parking, which I appreciate.)
On my first day, I scanned my orange card and my radiation nurse met me beyond the reception area. She made sure I knew where to find gowns and where to change. I only ever needed to remove my clothes above the waist, since that’s where they were working. After changing, I’d wait in the internal radiation waiting room, where the wait was rarely more than a few minutes.
The radiation room itself is big and chilly, with equally big machines. Once I was in the room, things moved quickly. Most of the time was spent getting me into my exact, predetermined position using reference images, scans, my tiny tattoos and Sharpie marks — and even a ruler made of beams of light that can appear on demand. The radiation itself only lasted a few minutes. It doesn’t feel like anything, but the machine does make a lot of noise. It’s not earplug-level noise, but it’s definitely the dominant sound in the room.
Afterward, the techs would help me off the table. I’d change back into my clothes, grab a decaf iced coffee from the cafe most days and head home.
That was the routine for the first 16 sessions. On Mondays, they touched up my Sharpie marks and did new scans. On Fridays, I met with my radiation oncologist immediately following treatment.
Simulation: Part Two
On February 27, I had my second simulation appointment to work out my side-lying position for the final four sessions. They use what I thought was a really interesting tool for patients in the side-lying position — a flat bag filled with air. You lie on part of it to keep it in place, then they let the air out and mold the rest to your back. As the air is released, the mold hardens, leaving you with a perfectly formed backrest. I used that for the final four sessions, which all went smoothly.
Completion
I completed radiation on March 17 — exactly a month after my dry run. My radiation nurse gave me a certificate of completion. They had a tiny gong I could ring on my final day and I did. People clapped. They said it was more clapping than usual. I’m about it.
One of my favorite memories of radiation is how one of the techs pointed out that when they were lowering the table at the end of treatment, I’d often be propped up on my elbows just chillin’. They said most patients complain about the table or the awkward positions. I actually found the table kind of comfy and would sometimes start to fall asleep during treatment. We bantered a lot, and as I approached my final days, they told me I was their favorite patient in a while and that they’d miss me. That made me feel really good.
Side Effects
My radiation side effects were fairly minimal and manageable. My breast became very pink — I was instructed to apply lotion daily during treatment and for six months after. I was also told to stretch my arm daily during treatment and for a year afterward. I’m not sure why radiation made my right arm muscles so tight, but the stretching helps.
The fatigue hit around week three and hasn’t really let up. I’m still sleeping until 10 AM to noonish most days and taking afternoon naps. And we all know, already having ME/CFS and POTS, extra fatigue is the last thing I need. The one upside is that I’ve had 20+ years of practice existing while extremely fatigued. Doesn’t mean I like it any better, though.
Other lingering side effects: my breast is still pink on the outside and swollen on the inside. It itches frequently, but because I still have extensive numbness in my breast, arm, and armpit from surgery, I can’t really scratch the itch in a satisfying way. I try, but it’s like I can’t quite reach it. I also still have occasional breast pain, which I suspect might be from scar tissue pressing on nerves.
Good Stuff
One “side effect” that I truly enjoyed was making a new friend. I treated myself to (decaf) coffee from the café most days, and in doing so, I befriended one of the baristas. On my last day, she paid for my coffee and thanked me for being a bright spot in her day — she said she always felt so much positive energy from me. I was really touched. We’re connected on Instagram now, though we haven’t spoken since. Still, I’m grateful for that little friendship. It made the whole experience a little lighter.