Just a little update of sorts. Nothing too new to report, just enjoying my time before starting radiation. I had an appointment with my Radiology Oncologist on Tuesday July 26th, and they started getting me "prepped" for radiation. My Doctor will decide on the amount of radiation I will receive after she gets my PET scan results, but has decided that I will start radiation on August 8th. My PET scan is on August 6th, so she will have my results by the 8th and decide on my specific radiation plan. During my appointment on Tuesday, I was told that I would get little permanent tattoos of dots on my chest so that they know the area they will be radiating each time. I was so nervous about this since I have no tattoos and was worried it would hurt...such a baby. But it was actually not that bad. They tattooed three very small dots, one right in the middle of my chest (this one hurt the worst), and then one on each side of me (right below my armpits). From what I understand, the tattooed dots just map out the area that they will be radiating. I will keep everybody posted about my PET scan results, and will be sure to write about my experience with radiation. The nurse told me that with radiation to expect major fatigue (already feeling that), a possible sore throat, esophagus pain, trouble swallowing, and a sort of sun burn on the chest and back. Not to mention the possibility of other long term effects that I had to carefully read over and sign a consent for. Usually during radiation they fit a mask to people's faces that basically keeps them in place while receiving the radiation so that they are in the exact same spot every time during treatment, but the nurse said that I will not be needing one...I am a little confused/worried about that since this mask is what keeps people from moving, and helps ensure accuracy. I plan on checking with my Doctor about this...it's not really something that I want them to make a mistake on. I say just give me the mask if it's going to help me from moving while receiving radiation. Above is a picture of what that mask looks like so that you have an idea of what I'm talking about.
Since chemo has ended, I have physically just felt really exhausted. It seems like I am more fatigued and tired now than I was during chemo. I have also just felt really sore and achy...which I am sure is just from the after effects of the chemo. I'm probably just being overly sensitive, but I feel the expectation that now that I am done with chemo that I should feel back to myself right away, and just jump back into normal life. But I don't feel back to myself or "normal," I expect this to take some time. Unless you or somebody close to you has or had cancer, you probably will not understand that it is quite a process that requires a lot of patience. "After treatment" healing is just as important as during....I feel that I have so much healing to do physically, mentally, and emotionally. It is a long transition to getting back to "normal" life. For many years to come, I will constantly be going to Doctor's appointments and cancer will always be on my mind. I know that once I am "clear," I cannot let this take over my life, and I don't plan on it...but it's not something I can just forget and not worry about either. It has changed my life forever. I have noticed that the emotions of all that I have been through have started to catch up with me a lot. During chemo treatment, I was too sick and "drugged" to really think about what I was going through. Now that chemo has stopped and I can think more clearly, all that I have endured in the last 6 months just seems unreal.
I came across this book and ordered it, I only found it available in the UK, but think that it is one of the best books written for people who have had cancer. I wish that everybody who has been through any type of cancer would read this, it helps so much. It was not that badly priced either, I ordered it off of Amazon...I
highly recommend it.
Steph - I'm curious (well actually more like anxious) about starting my own radiation treatment as well. Will the spots ever wear off? I'm just wondering if I'll have to keep those spots forever!
ReplyDelete~ Ashley
Hi Ashley! I was told that they are just like a regular tattoo and are there permanently. I was bummed about that, but the good thing is that they are super tiny, and not very noticeable at all. It looks like a speck of dirt (but is a blue color). I guess we can think of them as reminders of all that we have been through...a sort of battle wound :) I definitely never imagined my first "tattoo" being so uncreative! LOL!
ReplyDeleteWell thank goodness it's only a super tiny dot!! I was kind of mad when I read that you had to get permanent markers on your person. I was like, "seriously????? I already have three unpleasant looking scars from the port/biopsy so do I really get MORE permanent things on my body lol. If no one asked about them I wouldn't care, but whenever I'm wearing a shirt that doesn't cover them I'm ALWAYS asked about them and I really don't feel like regurgitating my life story...lol. Have they said anything about how many times you'll have to go in? I feel like I won't be having a life as it sounds like 5 times a week for like 3 weeks for me (ughhhhh)but I'll let you know when I find out for sure what I'm doing. A family friend of mine suggested that I ask about this cream you can get to put on your skin to help lessen the harsh effects on your skin from the radiation. I don't know what it's called, but I'll have to ask. She recommends that we get it before our skin gets blistered/sore lol.
ReplyDelete~ Ashley
I was upset about it at first too, but after getting them, they aren't that bad. I know what you mean about the unpleasant looking scars!! I feel like mine are SO noticeable! I also have them from my port and biopsy...and am always trying to keep them covered. I was told that I will have 3-4 weeks of radiation (going 5 days a week also), I'm not looking forward to it! If you find out the name of that cream, I'd love to know what it is! :) A Hodgkin's Lymphoma survivor friend of mine got me an aloe vera plant as a gift when I was first diagnosed, and said to use the aloe vera from it during radiation and it helps a lot, you might want to get one as well when you begin radiation :)
ReplyDeleteThanks for the tip, I'll definitely invest in some pure aloe vera when I get to that point. So I was looking in the mirror earlier and I realized I don't look "as bald" as I did earlier this month lol. What's up with hair starting grow even if you're still doing chemo? I discovered this blog tonight and I thought you might find this interesting. I was intrigued as I can't wait to get my hair to at least half my original length! Here's the link:
ReplyDeletehttp://hairgrowthafterchemo.wordpress.com/2010/12/
~ Ashley
My hair grew the entire time during chemo, it almost made me regret shaving it! lol. My Doctor said that it was normal. But after my 8th treatment and up until even now, it has fallen out quite a bit. The other day I was messing with my hair and saw lots of pieces falling out. It seems like during chemo, hair does some sort of weird growing and falling out at the same time sort of thing, lol. I'm just looking forward to mine growing back WITHOUT falling out :) Thank you so much for sharing the blog! What a great idea to take pics to keep track of the hair growing back! :) I've been curious as to when it will start growing back normally? I've heard it takes a few months because the chemo is still in the body and everything.
ReplyDeleteYeah, it probably will take a long time... right now I've got some hair, but it's very fine, like baby hair! lol. I learned today though at my eye exam that the chemo may be messing with the rods in my eyes a little bit. My vision is fine, and he said I wouldn't really notice anything, but he basically explained that they aren't reacting as fast or as they normally would. But he said in his experience, they bounce back to normal once you go off the drugs.
ReplyDelete~ Ashley