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Blog

Where I document my happenings, my life, and my thoughts.

I made it! Six weeks of driving 2 hours back and forth daily are finally done! I am so happy to be sitting here on my couch at home while the boys run around the house screaming instead of sitting in the car for another 4 hours. I suppose you are wondering about how I am feeling. Honestly, not to bad. I suppose I have a bit of an advantage when it comes to that. I have found that upping my hydrocortisone on days that I am feeling crappy worked out well. Most people at this point are feeling pretty wore out. The side of my face is pretty burned. Just like a sunburn actually. Does it hurt? Not really. Again my advantage lies in the fact that I can't really feel anything on that side of my face from my surgeries. My taste buds are fried. This is probably the hardest part. Nothing tastes good anymore. Eating is more of a chore than an enjoyment. I can still taste sweet a little bit, so switching my foods over to the sweeter variety helps a bit. I like fruit. Pineapple is still quite flavorful, if not dulled a little bit. Pasta, breads, all meats, cheese, and anything that is dry is pretty much out. I can't swallow it. My salivary glands are pretty shot. Water has definitely become my best friend. That is not necessarily a bad thing I suppose. I have a bald spot on the back of my neck. Not noticeable at all unless my hair is in a pony tail, so really, not that big of a deal.

So now I have a good month to live my life worry free, to heal, and enjoy what's left of summer before I go back in to get more scans. I will be sure to keep busy.

Radiation at 6 ...
Radiation at 6 ...
Radiation at 6 ...

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Radiation

I have completed 18 treatments of radiation and so far so good! I am starting to develop a few minor side effects, but nothing to stop my day. So far the worst of it is the lack of taste. EVERYTHING is so bland now. It makes me not want to eat. I have been trying new things to see if I can get any flavour out of it, but so far nothing is too exciting. On the bright side, my taste for sugar is still somewhat ok, so sweet things are better than anything else. Unfortunately, I have never really had a sweet tooth, unless it chocolate was involved, so I'm not going to force it. Besides the taste, I have a bit of a dry mouth and throat. I can't really stand air conditioning as it just makes me cough. I keep water with me at all times for the dry mouth. I keep drinking it and I keep peeing it back out. Ha!

Flooding

If you follow the news at all (which I really don't) you may have heard something about a ton of rain falling upon Burlington, WI and the Fox River. I don't live in Burlington, but I do live next to the Fox River downstream from Burlington. I can't believe how much rain we got! Eight inches actually. It just kept coming down. Streets, yards, and basements were flooded EVERYWHERE! Luckily I don't have a basement, but I do have a yard and live on a street. Both were flooded. But you see the problem with living off a river is the true flooding doesn't happen until all that water flows into the river. They say it was a 100 - 200 year flood. Luckily for me, I live on high enough ground to not have the flood water reach my house. Unfortunately, I live on a dead end street that connects to a street that follows the river and I don't own a truck. If I were smart I would have moved my car to the street somewhere out of the flood area, but if I would have done that I don't think I would have moved it far enough. The river was up higher that the flood maps showed. I'm glad I just kept it parked. I have a couple of awesome parents that picked me up after I trekked through crawfish and turtle infested waters so I could still make my radiation appointments.

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So the type of radiation I am getting is called Tomotherapy. In a lot of ways it is better than traditional radiation because it is a lot more precise. Side effects are lessened and more healthy tissue is left untouched. I did a lot of reading about radiation, as I do with everything, before going in to see what to expect and found that I might need a feeding tube and perhaps have teeth pulled, etc, etc, but my doctor said that I would most likely need none of that. I guess tomotherapy was developed at UW-Madision which makes it the best place to get it me thinks! But on to point, today I had my 9th treatment, and I can say it's going along pretty well. I am starting to get a bit of a sore inside my cheek on the right side, like they said I would, but besides a bit of dulling of my taste buds, I really have nothing to report. They say the side effects don't really start kicking in until after the second week, so I suppose we will see what else will happen. If this is all I have to deal with, besides the drive, bring it on! The lovely Briane joined me for this particular trip as she has a few days off. We spent about 9 days in a car together once and didn't kill each other, so this trip was a piece of cake. We are both on the same level of weirdness. I like that. Here are some pictures from the day.

Me in my mask
All done
Briane on a bea...
Ice cream stop

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I just wanted to quickly chime in to wish everyone a safe and fun Independence Day! For those of you who use IMVU, log in and receive a free gift that I made!! :D 

Cheers!!

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Birthday fun

Happy birthday to me! Yes, on father's day I turned a year older. I decided to have a big bash this year, and even though not everyone I was hoping would show up, showed up, it was still a good time. My parents own an 80 acre farm, so what better place to hold an event such as this! 

Getting ready for it was a bit stressful, but what party isn't. I had to clean out the quonset (large storage shelter) and set up the tables. I bought some burgers and brats and a whole lot of beer. Oh, and don't forget the port-o-potty. My mom decided to get me a My Little Pony cake and some pony ears. :-D Did I mention I turned 36?

The party didn't really kick off until 7, though a few people stopped by earlier. When 9 rolled around it was time to light the BIG bon fire. My dad had a brush pile just aching to be burned. I swear the flames flew 30 feet high! We were up until 4 am watching that thing burn despite the big storms that rolled through and soaked it down. It really was a great party.  I am really happy people were able to celebrate it with me. 

Radiation 

I had my first radiation treatment on Tuesday. It was pretty easy. The mask they made was sitting waiting for me on the scanning bed. They had me lay down and they snapped it over my face. When I was comfortable and the nurses were happy with my placement, the bed slid into the scanner. After about a minute the scan was done and the bed slid back out again. I laid there for a couple minutes while they reviewed the scan. After they made the adjustments to the lasers, my bed slid back in and the radiation began. It kind of sounded like a guy shaking maracas around my head. I could feel a little bit of tingling on the treatment area, but that was about it. After a few minutes the machine turned off and the bed slid back out and that was the end of my treatment. Today was about the same, but this time I had a little bit of a metalic taste in my mouth.

I have to do this every day so I will keep you posted as symptoms emerge. I want to think of this as a journal to keep track of how I am doing as well as give anybody going through it themselves an idea of what to expect. I know I am always looking for experiences, so it is only fair that I share mine. 

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