Sunday, July 7, 2013

Radiation fun !

Radiation fun ! Well, the radiation was stopped 2 weeks ago due to too many side effects and all. First the brain began to swell which caused trouble like head pain and then face numbness. Then the problem with swallowing started and now I'm on a diet by Bob (the tumor) that included lots of soup and grits and anything else that doesn't get stuck. Last week we had the day for the test that tells what's going on and why it isn't working. Can I say I'm not that into doctors ? I feel like I'm going to go and they will say hey, everything's fine and it's all in your head lol yeah I know, that's where Bob lives anyway.. They rushed us off last week for a MRI, turns out they thought I had a stroke. Thank goodness I didn't and that they didn't tell me before we left for Boston that night. So we had a swallow test to see why things aren't working and then discuss if radiation needs to be restarted again or not. Once radiation is done, it can never be done again, so I'm told, so if it's stopped for good, were back to ground zero on letting this thing grow again. Oh and last week, I lost my taste so no matter how much sugar there is in the coffee, it's like drinking water. Very weird ! I'm becoming the soups chef. I've got a small crock pot that every morning I fill with what ever is in the veggie drawer and then cook all day for lunch and dinner. I do love soup so it's been fun but now that I can't taste, it will be odd to be trying so hard to make it good since it won't matter. It weird when everything tastes like old uncooked pie crust. Of course the swallow tests were inconclusive and then swallowing started working again the next day, thanks to the steroids and swapped out for numb feet. Its weird walking on feet that tingle all day long but that is something I can deal with easily. Monday we visit the ENT and they, with the doctor, will make the final decision on if we re-start the radiation or not. We both vote to start it again but we shall see.I think we will find out Wednesday on the final verdict and hopefully if they start again it won't be stopped right away if things start to go down hill again. I still feel quite sparkly from the steroids which make me want to get every chore known to man done around here. They are slowly getting done and the rest planned out on paper lol Once the tired goes away, then we will do something more but the couch calls my name alot these days which I hate because a couch layer, I am not ! So I lay there and make plans for new ceiling Trompe-l'œil designs, bathroom is planned on both floors in new ways, and more lol. Its going to be a busy year with all these ideas in my head. Now I just need to start making jewelry designs because making them at the bench isn't too hard. This woman pulls off sparkling much better than I. I hear my face is swollen and I know that I look redder in the face as well. Oh joy ! But hey, if that's all, I'll take it. Anyway, that's the fun of it all these last couple of weeks.

4 comments:

  1. Lis, you amaze me. I can't begin to imagine what you're going through and I don't know how you manage to deal with it all so well. I know I've been off the grid, so to speak, but I think about you all the time. I see your beautiful jewelry and I wonder "how is she doing all this while dealing with her brain tumor?". I see the horse posts and think, she just keeps going and going. I am learning from you and your determination and ability to see past this to having as much of a life as you can in spite of the brain tumor and all it's evil friends. I have so much respect and admiration for you in addition to the love I've carried in my heart for years for you and Kev. I pray this ends soon and your life becomes amazingly healthy and beautiful. You are one hell of a strong woman.

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  2. Thanks so much Crissy ! I do just try to keep putting one foot in front of the other. Just have to or the pity party would be huge. lol My way to keep the bad thoughts out is keep busy. I have to say that last month a woman I worked with on the horses decided that I just liked to play games with peoples lives and horses lives. I'm not sure where she got that idea or why the other woman agreed with her about how I live or who I am but it hurt to the quick of my heart. Like I have the time or inclination to bother with that kind of crap in my life. She now hates me, never speaks to me and I'm at a loss. I had to move on from that but it hurt. So I keep helping as best I can, keep paying it forward as I can and keep the eyes on the prize in the end. Loving life. ♥ Love you !!

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  3. FYI. I received Stereotactic Radiotherapy in 1992. I was told I could have it again, but I had to wait at least 10 years. I had 6 weeks the first time and 3 weeks 18 years later. You may want to get another opinion about the radiation? I suggest Dr. Leoffler at MGH.

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