So I pretty much suck at updating this thing. But hey I am trying to think up a way to get my thoughts on here more often.
So where did I last leave off, mid-February, hmmmm so much has gone on but what was first. I guess it would be my radiation set-up appointment on February 17th. I meet with the resident and radiation nurse and we talked about radiation side affects and methods to combat them. The common side affects are hair loss and skin burns at the sites of radiation entrance and exit, as well as headaches, nausea, tiredness and perhaps effects on my speech. To combat the hair loss and skin burns I was told to only wash my hair twice a week with a sensitive, fragrance free shampoo and conditioner, like baby shampoo.
Well with long hair I thought this could be bad or a mess. And starting thinking I would have to cut my hair off. Research was done on this and I kept my hair. I actually found an earth science shampoo and conditioner that are pH balanced and fragrance free that are working wonderfully, along with a shower cap worn on the off days.
As far as headaches and nausea went they could give me steroids or pills to combat those. Advil works on my headaches when taken right after my treatment and I did not get the nausea. The tiredness would slowly build up and has, but sleep solves that problem. I also have not noticed any speech issues.
Then I was walked through the radiation treatment area and had a thermoplastic mold of my face made, so my head would be locked in place for each treatment to hit the same spots. Naturally I had to ask what the thermoplastic type was and the techs couldn't tell me, but gave me its consumer name.
I was a bit leary of having to wear a mask locking my head down since I am mildly claustrophobic. However, the plastic is a mesh and they cut eye holes and a mouth hole so it wouldn't be as bad. During the set up they performed a CT scan to allow the doctors and physicists to set up my treatment plan. I didn't freak out during the CT scans, which were longer than my treatment would be so we guessed I would be able to handle treatment drug free.
Next I meet with a clinical trial coordinator to sign up for an MRI study throughout and post radiation to track the effects of radiation to the brain. This study requires an MRI just prior to radiation, 3 weeks into radiation, the last week of radiation, a month after and then several more following. It also requires a neuro-behavioral test and a quality of life questionnaire. Which were all to be completed the following week.
We scheduled the MRI and tests for the following Tuesday. I worked the rest of the week and relaxed all weekend, which was really nice. I cleaned and organized my apartment more and watched movies. Just exactly what I wanted to do. Slowly but surely I am getting more moved into my apartment and making it feel more like my home. I also did my taxes, argh! they are so frustrating, but I did them and am proud to say I figure that beast out. My friend Scottie stopped by on Sunday and we went out to lunch and caught up just like we used to, it was really nice.
The whole week several people were trying to figure out what the neuro-behavioral test would be like and nobody had any idea. So I kinda let that curiosity build up and was surprised to find out it was just like the Nintendo DS game Brain Age, which disappointed me cause it was so easy. I didn't think it was really a test more of a game. Everyone was surprised when I told them what it was. The quality of life questionnaire was equally as easy. My MRI was performed on the research machine, which is nicer and slightly quieter (still need ear plugs though). The MRI took about an hour and a half and was used to set up my IMRT (intensity modulated radiation therapy) treatment plan. I was told my radiation would start 2 weeks later, March 10th, how excited could a girl get to be irradiated?!
I worked 3 days that week and was planning on sleeping in when my boss called me at 7:30 am on Friday and said that he needed me at work since we had a fire and I was needed to solve the issues the fire caused. I got a good adrenaline rush and before I knew it was 12:30 and Cynthia was telling me to stop working and eat (what a good mom!). My boss was very appreciative of me coming into work and I very much enjoyed feeling needed there still. It was very fun since I was able to go out into the mill and see people that I hadn't seen in months.
We left work early that day and I continued on with my busy day going to dinner with my Aunt Terese, Uncle Mike, Carolyn and her housemate Katharine. We then went and saw Mark's band play and he sounded so good. I was very impressed with how well they did. Following the concert Katherine gave my Aunt Terese and I massages, which felt absolutely wonderful and relaxed me for bed.
Scottie had called me during the week and asked if I wanted to attend the Outdoorama with him on Saturday and all I could think was seeing him 2 weekends in a row would be fun. We walked around the Outdoorama for a couple hours Saturday morning talking and looking at trip fliers and boats, eating wild game sausage and talking. It was a lot of fun. Saturday night I went to Hell, Mi, with my Uncle Mike and Carolyn to listen to a family friend play in a bar band. It was really odd sitting in a bar and not ordering a drink, which I am slowly getting use to. We were out until almost 1 am.
On Sunday my cousin Carolyn and I went ice skating, which I was slightly concerned about falling and hitting my head, but none the less I went. I have been skating for 20 some years and figured it would be just like riding a bike. So I went out there and had fun skating laps and doing cross overs and stopping with out using the wall. It was a fun trip. My cousin and I then went out to dinner and talked a bunch.
Through all this I was just doing as much as I could in expectation of the radiation wearing me out.
The following week I worked and dealt with needless apartment problems, like not having full electricity for 2 days. It sure is a blast living on my own, but hey why not learn everything all at one time is my new perspective.
Saturday, March 28, 2009
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