Well, it has been three weeks now since the end of treatment. The doctors had told me to expect an increase of pain beginning about a week after treatment. They were right. The mouth sores were pretty spectacular. Those began about one week post treatment. Taste buds were gone, of course and pain with eating became pretty intense. Basically my daily routine is to take tylenol and Ibuprophen every 6 hours and then at meal time to rinse with a viscous lidocaine solution and then a second topical anesthetic that is even stronger and then eat quick before the anesthetic wears off. Oh, and I drink an "Ensure Plus" every meal to try and hold onto my weight. After that I run to the sink and try to brush and floss and then spit blood for the next few minutes. Then I rinse with anesthetic again. Even doing all of that I lost about 18 pounds. Frankly eating is no fun anymore. After about two weeks my doctors here determined that I had a herpes infection on top of the mouth sores so they started me on Acyclover and that helped. I was showing some improvement and then started getting worse again. Another visit to the doctor revealed a sinus infection had come up. I started some amoxicillin about two days ago and now I am seriously feeling better. This morning I woke up and thought, "wow, I don't hardly hurt". I haven't eaten breakfast yet but still, that is serious improvement.
My doctor from Mayo has been so nice. He has emailed me multiple times checking on me and suggesting what I should do. I couldn't ask for a more kind, caring doctor than Dr. Foote. So, I think I can see the light at the end of the tunnel. I have been so tired lately too. I'm hoping that in the next few days that begins to grow less as well.
As always, I am so grateful for the prayers and faith of others in my behalf. Thank you! Four weeks ago we were told that there was no hope for my survival. Today I am just dealing with a sore mouth. That is a big step forward in my book. Truly a miracle. Thank you for helping that miracle happen for us.
By the way, here is a picture of the bird back in Minnesota that kept swooping down and grabbing my hair every morning when JoLynne and I were walking. That was really weird. I have cut my curls off now. You just can't walk around with your hair looking like nesting material, it's just too dangerous.