“I like your tattoos,” the waitress said. I was startled. “I’m sorry?” “Your tattoos,” she repeated, pointing to her neck. “Oh.” I self-consciously touched one of the stickers with the sharpie marks underneath it. “They’re not tattoos, actually. They’re marks for radiation – I’m having radiation.”
At the beginning of all of this, radiation was not something I spent a lot of time thinking about. My surgeon told me right away that I’d need it. My plastic surgeon was concerned about its effects on my skin. But for me, surgery and chemo were the big dogs. I’d worry about radiation later, after I’d recovered from major surgery and almost six months of strong anti-cancer drugs being dripped into my veins.
As it turned out, about halfway through chemo I realized that I needed to know when I’d be having radiation. I wanted to plan some vacations, and I needed to let opposing counsel know when we could reschedule the trials that had been delayed since my November diagnosis. Too, I heard about a new kind of radiation – proton therapy, which would cause less damage to the surrounding tissue. It was unlikely that insurance would pay for proton therapy, but there was a center only 20 minutes from my house, so I decided to make an appointment to see if maybe I’d be an exception to that general rule.
Ultimately, I ended up meeting three radiologists – more than I did for any other of my therapies, which seemed odd given that I was the least concerned about this part. First I met Dr. B, the radiologist my plastic surgeon preferred of the three at my cancer center; she’s the youngest and he thought she might be more protective of my skin. Next, I went to the proton center where I learned that my insurance wouldn’t pay for that therapy (we tried, but they declined) because it cost more than twice as much as traditional radiation. But, the proton doctor said, they were starting a clinical trial to compare proton and photon (traditional) radiation for cardiac effects on patients afterwards, and I was eligible for it. If I joined the trial, I had a 50% chance of getting the proton therapy and a 50% chance of getting what I would get anyway, although I’d have to go to a different hospital than my current one.
I thought about it and talked to all of my doctors, and went and met the radiologist I would have been assigned if I joined the trial and didn’t get protons, and decided that the trial was a win-win. Unfortunately, my insurance refused to pay for the clinical trial too! (Wah-wah.) So, it was back to my original hospital and Dr. B. At the end of the day, I’m glad I tried for proton therapy, but I liked Dr. B the best of the three radiologists anyway and I liked that she was at the hospital with my other doctors (in fact, she remembered me from a tumor board session where the thinness of my skin was discussed).
Dr. B and I agreed that in order of importance, my goals are: 1) no cancer recurrence; 2) no heart issues from the radiation, and 3) the ability to complete my reconstructive surgery. With luck, I’ll be able to get all three. I’ve been both lucky and unlucky at times so far with this whole cancer thing, so we’ll see.
So far, I’ve had 6 of 28 sessions. It only takes about 15 minutes and you can’t feel it. The only side effects so far are a feeling like I have a lump in my throat and a bit of reflux (from a lymph node by my clavicle that requires radiating, causing a bit of the radiation to graze my throat), but I can expect skin side effects at the least like being sunburned (possibly pretty badly) and increased fatigue. Still, it’s a little weird to be alone in a room with a 12 inch door due to the high levels of radiation while a machine silently whirs around you. After the social experience of chemo which included my husband and at least one friend per day, plus chatting with nurses and other patients, this feels kind of lonely. A couple of times I find myself lying there with unexplained tears in my eyes.
Still, radiation is the last step in what I think of as “active treatment.” (I need at least 2 more surgeries and will be on hormone suppressing drugs for 10 years at least, but I won’t be at the hospital on such a regular basis and I should be able to get back to my regular work schedule instead of feeling like I’m out of the office half the time.)
Normally, they wait four weeks after chemo is over to start radiation, to make sure the majority of the drugs are out of your system. But my blood counts were so good at the end of chemo that at my request (due to work and the Chicago marathon in October) they started my radiation two weeks early. That means if all goes well I’ll be done in mid-August and by my birthday we can celebrate that we made it through the big three of surgery, chemotherapy, and radiation! With that in mind, I can’t wait to turn 48!