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.

Beppy

2/15/14 - Back to Radiation!

My surgeon called yesterday with the results of my ultrasound. The lump we were feeling was scar tissue. Great news!! I've got a radiation appointment on Thursday for tattoos and I think they will start zapping me on that day. I think I'll take a vacation from lump exploration.

lump.a.noi.a
noun: lumpanoia
A mental condition characterized by delusions of growing lumps which causes excessive lump checking. It may be caused by too many treatments for breast cancer.

lump.a.noid
adjective: lumpanoid
of, characterized by, or suffering from the mental condition of lumpanoia.

Hope you're all having a great weekend so far!!

Cheers,

Beppy

2/12/14 - Update

I've been a bit in limbo while waiting for my ultrasound. It's scheduled for tomorrow. I've given up on trying to predict an outcome. When I first started this process I was sure it wasn't cancer, and was wrong. The last scare I had, I was sure it was back, and I was wrong. I guess if I were to follow a pattern, I should think it's back so I can be wrong again. Yep, I think wrong is a good way to go. I find you can really drive yourself batty. Every little ache and pain makes you wonder if it's progressed. Having rheumatoid arthritis makes it even more challenging. I asked my oncologist how I would know between a progression and RA - he didn't really have an answer for me. I guess the only way to know for sure are biopsies and scans. Fear of progression seems to always be on my mind since these new lumps keep popping up. I'm ready to move forward from limbo land.

On a brighter note, Mike has started his first full-time job. It's a bit odd not having him in-and-out during the day. I'm very excited for him though - he has joined the world of adulthood.

We put our motor home on consignment. Any takers??? Six years of camping has been a blast - I'll miss camping by the beach the most. We made a decision to travel more once my treatment is done, and we really can't afford both. We miss our road trips to Washington and there are so many places we haven't seen. We would also like to take a road trip to see Don and Annie in NC, Aunt Jayne in PA and my hometown in NY. Once we hit the lottery, we will be good to go! Laugh if you want -- it will happen -- somebody has to win :P.

Hope you are all doing well. I will give you an update once I get my results.

Love to All,

Beppy

2/6/14 - Radiation on Hold Again

A few days ago I discovered another lump at 3:00. I went for my appointment yesterday to finish my simulation, get tattooed and possibly start rads. I ended up not doing any of those things. The RO said he can start the radiation, however, he can't say definitively if the new lump is cancer without further testing. I was so tempted to just start the radiation. Seems silly though to go through all of that if there is still cancer in there. He also said it could be a seroma from the core needle biopsy I just had. I'm hopeful that is the case, and I can just move on. I'm starting to feel like a ping pong ball - radiation - US - radiation - US. I'm rethinking my decision to have a lumpectomy. The risk of infection was just so high for me, which is why we chose the lumpectomy. I guess there is no point in second guessing - it is what it is. I'm trying to keep a positive attitude. Here's wishing for a seroma or another fibroadenoma.

Thanks for checking on me.

Beppy