Well we took our trip to mayo. My first apt of the day was my swallow test. That went well. It went fast and she said I was doing fine so the tube could come out. I was pretty excited about that.
Next we had our apt with the ENT. The doc that did my surgery wasn't there, he was in meetings, so we saw another doc that we usually see before Dr. Moore anyway, who I like. He took out my tube and did the scope up my nose again and down to my tongue and throat and looked at everything. Said it all looked good and he thought he could see where the doc in Waukesha cauterized my bleeding. Said I would need to come back in 3 months for a follow up. I asked him about Dr. Moore and his decision not to radiate and he said it still stood the same and he agreed.
Then we sat around for a few hours waiting for my apt with the radiation oncologist, to my knowledge I was having this meeting just to know all my facts. Well, when we got in there Kevin and I were both surprised that she said I needed radiation because Dr. Moore had been saying since before surgery I didn't need it! I told her, Dr. Moore said I didn't need radiation, and she said, that is not what he said to me. My guess is what happened was she looked at my pathology reports, and suggested to Dr. Moore that I have radiation. Reason being, there was something called Angiolymphatic invasion, which basically means, he did get all the cancer tumor, and he got all the cancer in the lymph node, but there could be some cancer cells in transit in between the tongue cancer and the lymph node. they don't know for sure if there is or not, but there could be?? They also said lymph nodes that are 3cm or smaller, they don't do radiation. Mine was 3.2cm. so I was right on the border. I was upset. I wanted to talk to Dr. Moore before we drove home 4 hours so we went back upstairs and asked to speak to him. They said he was still in meetings but they got him out, and he came to talk to us.
He said the same thing, that the angiolyphatic invasion bothered him and he agreed with the radiation oncologist that I should have radiation. This upsets me, because he knew exactly what my pathology report was the time before we were there for follow up and he told me he wouldn't do radiation if it were him. So did she talk him into it? I am not sure. But he said he'd rather over treat me then under treat me and it come back because then if it came back, I'd need all three, surgery again, radiation, and chemo.
Needless to say, I cried on the way home. This last few months has been such a long difficult journey already, 3 surgeries , feeding tube, etc, I was just ready to be done and start healing. Now I have to start over again. So yesterday we met with a radiation oncologist at Waukesha memorial. Dr. Jones. He was very nice, personable, and seemed quite knowledgeable. Answered all our questions and he has two other patients right now that are having head/neck radiation. I was trying to get a consult at the medical college of Wisconsin too, just to see what they are like and what they say. I want to make sure I am getting the best care, but hopefully God will lead us to Waukesha so it's easy for me and my dad to go everyday. Please pray for our family during this next 8 to 10 weeks. Pray for strength for Kevin to be able to deal with me, and take care of our family during this time. Pray for my dad, who will be with me every day, taking me to radiation. It's hard for him to see his daughter go through this. Please pray for my kids, not to be too affected by all the people in and out of our house, taking care of them, and their mom not being able to do anything. Please pray for me. For the side effects not to be as terrible as I am anticipating them to be, and the doctors say that will be. Pray that God , the great physician will spare me from some of those bad side effects. We covet your prayers. We appreciate all your help and love and prayers.
love you.
( for some reason, this post didn't post before, but got saved. I wrote this before I wrote my postive list)
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