2/21/14 - Neck Problems at Simulation

I had my radiation simulation yesterday. Unfortunately they weren't able to start treatment. I had a difficult time on the table. Now for some back story. Some of you know I have RA of the neck. Due to the severity, I'm supposed to wear a soft cervical collar when I drive (I'm really bad about doing that, and know I have to get better). Apparently if I get in a car accident, I'm at risk for paralysis. My Rheumatologist also instructed me to write instructions on the back of my license in case of an accident. "RA of the neck - DO NOT MANIPULATE." I'm also supposed to tell anyone that drives with me, that if we are in an accident, to let the paramedics know of my condition. My spine and neck bones have slipped down which give me limited movement in my neck. Eventually I will have to have an operation to fuse the stem of the neck to something or another which will limit me further - blah, blah, blah. It's also the reason I have to have fiber optic anesthesia with surgery. This isn't something I like to dwell on,or even think about. So I've been really good at putting it out of my mind, and enjoy living my life of denial. Denial and I have a wonderful relationship. Occasionally I'm reminded of my limitations, yesterday, being one of those days. The plan was to finish my simulation, get tattooed and start zapping. I never considered what it would be like for me to be on the table for such a long period of time. I did really well the first 20 minutes. I was in quite a bit of pain, but I was able to hold still while they did their thing. I'm told I have a long torso so extra x-rays were needed. While my arm was in the holder, I developed an involuntary twitch in my neck and back. Along with the twitch was an unbelievable amount of pain. However I still managed to stay still. However, because of the twitch they had to start all over again. The radiation tech did not seem too happy, and I felt awful for not being able to control the twitching. I'm surprised they didn't read my chart to learn about my neck. They seemed surprised when I told them. It made me question whether or not I can do radiation. I had to rest my arm to get my neck and back to stop twitching, and eventually we started again with the same result. It was very frustrating. After an hour of x-rays, they finally got what they needed. I wasn't going to get the tattoos, but once she explained that we would probably have to do more x-ray sessions without the tattoos, I was convinced. They didn't really hurt - just a slight pinch. I received five tattoos. I had a difficult time getting off the table after being in the same position for so long. I'm embarrassed to say I needed assistance, however, they were really kind about it. Because of the time it took, they scheduled my first treatment for Monday, February 24th. I will receive 25 regular treatments and 6 boosts to the tumor bed. I was told not to put any creams or lotions on my skin for the exception of 100% aloe vera gel. No shaving under the treatment arm, which should really look lovely now that my underarm hair has been growing back with a vengeance.  They also said no deodorant for the exception of one certain kind, which I failed to write down. So not only will I be hairy, but smelly to boot - poor technicians. I was told the daily zaps won't take as much time as the set-up, so hopefully I won't get any more twitching or severe neck pain. I'm anxious to get this treatment behind me.

Hope you all have a fabulous weekend. Thanks for checking on me.



  1. Beppy. I am so sorry that it hurt you so much during the simulation, i started to write, 'stimulation'! so i hope that it is going well for you now. i came through radiation very well, and i did use this stuff called miaderm. it was formulated by radiologists, and even though it was expensive, i loved it for its non greasyness. they sold it in the same room at my treatment center as where they had wigs and scarves etc. i would put some on, as soon as i went to get dressed. When i got home, i would cut open an aloe vera leaf, and slather myself with that. The only other cream they mentioned, was aquaphor, and it was a petroleum product, and was thick and heavy and greasy. And so, some of the other women in there, the ones before & after me, we would compare. several women were badly burned, and they were further along than me, so i became vry concerned. but it didnt, and i told the other two especially, about aloe, aloe, aloe! once an hour, if you can. it is a miraculous plant, and washes off easily. a little stick and messy. i nevr wanted to use even the 100% aloe in a bottle, because i suspected it may have been harmed in the processing of it, but i suppose it would really help, if there was no alternative.
    I am keeping my eyes out, and my heart open for you. you know, you are pretty funny (lumpanoia! i have that too!) and i am so glad you are revealing yourself here.

  2. Kat,

    Thanks so much for the advice! I need all the advice I can get. I will look into Miaderm. I did purchase 100% aloe but haven't used it yet. I've been good so far with no skin problems - not sure how long that will last. I'm glad to hear you had no skin problems when you had your rads. I'll be so glad when it's behind me. Thank you for the comment!