June 14, 2018
The new PET Scan is scheduled for the end of the month – that was the 1st opening. The Radiation Oncologist wants to see what’s going on with my deeper lymph nodes. I’d like to know this, too.
All of what I heard yesterday was overwhelming. Again. I’ve finally reached my point of overload with all of this. I want nothing more than to go somewhere where I can unplug and get away from everything – insurance companies, doctors, dentists, and other people in general. And like November, I can’t. I don’t have the time or stamina to do it, and I hate this.
I will be having radiation every day for the next 5-6 weeks. This wasn’t a surprise. Nor is it a surprise to hear that I’m going to be exhausted again. I’m not looking forward to it. I’m tired of being tired. I will be happy to have this behind me. After this is done, I can “relax” and just have my Herceptin infusions and Physical Therapy (PT) and Occupational Therapy (OT) and all that other stuff that isn’t a procedure for the next 6 months. Knock on wood.
The information regarding the lymph nodes was something of a surprise, and it’s pushed me past my point of overload. The idea of having to be at the hospital every day for radiation was already a lot. I don’t know why I thought that I was going to get any relief from the stress of all of this by being off on leave. I’ve had more appointments than I’ve had free days in the last month, and I’ve been mostly too tired to do much of anything. Now, the RO said I should go back to work for a month or so and then take leave again at the end of radiation because it will take several weeks for the after effects to take hold. I’m not mentally ready to go back to work yet. I’m not getting a choice. I hate this, too.
I emailed all three of my doctors last night – the Surgeon, the Medical Oncologist (MO) and the Radiation Oncologist (RO) – about what was said during my 1st planning session yesterday. I got a response back from the Surgeon pretty quickly. The MO had her nurse call and she’s insisting I make a separate appointment just to discuss this one issue. That’s not going to happen. Between the issues with this nurse blowing me off before and all this new anxiety-producing information, I just can’t do that. I cannot make myself want to go back downtown just for a 2 minute conversation about why she didn’t talk to me about this before and what’s next. If it has to wait for my July appointment with her, so be it.
The Radiation Planning was finished today. There was a lot of measuring. I can’t put my right arm up over my head in the way they need me to for radiation quite yet. It pulls too much on my chest muscles and the nerves in that area where it’s all still pretty swollen from surgery. I’m doing some light stretching, but it’s still pretty tight and sore from all the work the Surgeon needed to do after cutting the tumor and lymph nodes out. The nerve pain is the worst of it. When I reach a certain way I can feel it all the way down in my forearm. It’s not fun.
Fortunately, there are some things that the radiation techs can do to help arrange my arm so that they can do the radiation treatments and I’m won’t be in agonizing pain the whole time. Once they got me in position and verified the measurements a few times, I had a chest CT so that the RO and the planning team can determine the best angles for treatment. With this treatment, I am wishing I’d have stuck with physics into college. Why I didn’t has more to do with a math block than anything else. The Radiation Tech made it sound like something I would have liked to do. Too bad I hated calculus too much.
Anyway… when the scans and everything were done, I got a tat. Well, actually four of them. Four tiny black dots of ink where the lasers will be used to ensure I’m in the right position every time. There is one in the middle of my chest, another near my belly button and the other two are on my sides under my armpits. They’re not particularly noticeable unless you’re looking for them. No, I won’t be showing them off to anyone.
Also during this appointment, I learned more what to expect – from fatigue to lymphedema to skin irritations, what I can and can’t put on my skin while I’m in treatment and which of my current medications/supplements need to be adjusted.
For radiation, I can’t use any kind of scented soap or put anything with alcohol or oil on my skin prior to each treatment. They recommend using Aquaphor, clear aloe vera or calendula cream after treatment. I learned that the green aloe vera has alcohol in it and the clear type doesn’t. Guess I never paid attention before.
I’ve already got Aquaphor. I’ll find some aloe vera and start looking for calendula and/or turmeric cream. The hardest part, I suppose, will be finding a fragrance-free, alcohol-free, oil-free soap. I’m sure there’s something somewhere. Just have to go out and look.