Monday, May 18, 2015


This is about a week late, but wanted to make a post tonight to share a couple of things about what has been happening.  This picture shows how they strapped me down every day for the twenty treatments that I got that ended last Monday, I think I explained it before, but they would lay me down with a foam thing under my forehead and another wedge shaped one under my chest that almost touched my neck and chin, my nose is about 1/2" from the table and I had to be careful about pushing the pad and paper down to the table to give me as much clearance as was possible.  It was only masking tape so I could have moved and broke it if I really needed to.  The yellow pads created a layer for the radiation that kept the treatments from going deeper than they wanted them to go.  Lucky I was only tied down like this for the last 10-15 minutes of each 25-30 minute visit.  The black band really served two purposes, one of course to help me hold still, but the second reason to me was more important.  Alot of people have had MRI's or CT Scans and know how narrow those bed/tables are, this table was that narrow or more so there would have been now way to keep my arms up and still without having the band holding them against my sides.  As I said the scheduled twenty treatments ended last Monday, but Dr. Dean decided to give me two more treatments on a slightly different machine on Tuesday and Wednesday that concentrated just on the crater on the top of my head.  With that machine I only had the band around me and one or maybe two strips of masking tape to just remind me not to move around.  These two treatments took less than 10 minutes total and then I was out of there.  I go back to see him in June to see how I have recovered from the "radiation" sunburn on my head and neck that has me losing layers of skin on a daily basis and at that appointment, I think he will schedule another PET and CT Scan to see if there is anything left hiding in there that made it through this round of treatments, the scans will probably happen about the second week of July because they want everything to settle down and be more normal before they look again, I guess it's like the 100 day tests I had to do after coming back from Salt Lake.  Last time I posted a picture of when I lost some of my hair, well I hung on to what I had for a while, but finally gave in to the inevitable, this next picture shows what will probably be my standard hair situation for quite some time.
Again I only took the shot from the front because no one wants to see what is on top of my head yet, hopefully some day soon I can take a picture of the top of my head that won't be too offensive  I got some prescription stuff to put on my head that is suppose to help it heal and keep the infections away because of my almost constant loss of skin because of the burn.  You can see a touch of pink at the top of my head, that is from the burn.

On to other things, Patty had a pretty good week last week and was feeling so good that Patricia and her went over to Amanda's house last Thursday night when Matt was watching Holden while Ryan and Amanda went to the temple with Ryan's aunt and family.  That started out as a really good thing, but they left the house about 6:00 pm and didn't get back home until after 9:00, it was very good that she could go over, but she has been paying for it most of the weekend.  Then Saturday Amanda gave Ryan a wonderful party to celebrate his graduation and to celebrate him passing his boards to become a doctor of Physical Therapy.  We also stayed a little late at that one and so she was still wore out Sunday when we were suppose to go to Ryan's graduation ceremony.  I couldn't really make it there either because my head burn was driving my crazy all day as well.  We enjoyed seeing everyone at the party and were happy to have Bruce and Cara stay with us Saturday night, I'm afraid we weren't the best hosts we could have been, but I think they understood.  Then today Patty had more fun as Amelia Emett drove down from St. George for the day to take her to see Pitch Perfect 2, they had both been talking about it for months and were determined to go see it.  I'm not sure how long it will take to get her wind back, but hopefully it won't take more than a couple of days.  When she is like she is now, we have to become lip readers because she can't get enough air in and doesn't make much noise.  It has to be inccredibly frustrating to not have the control over your actions that you and I take for granted every day, especially after having such a good week last week.

I haven't seen or talked with Dr. Te's Office yet, I expected to need to get blood work done and see him during the next couple of weeks, I think I probably still will, but I haven't heard from him yet.

Well, until next time, I hope everyone is well and safe, we'll be thinking good thoughts for all of you, until next time.

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