Trach is out!

Monday, March 2, 2009: Ron had an appointment with his Medical Oncologist today to discuss chemo. Unfortunately Ron cannot have more chemo unless we find another MO to agree that chemo would help at this point. Ron's Tumor Board does not believe that more chemo would do any good. Their opinion is to wait until the cancer comes back before doing more chemo. The MO says that he is sure the cancer will come back, it is just a question of how soon. After the last surgery, the cancer was back within two months. So now we have an appointment with an MO up at UW-Madison. If she agrees that we should go for chemo now before the cancer returns, we will do so. Ron's MO wants him to have Carboplatin, Taxol, and 5FU. Very rough chemo for about 4-6 months.
Wednesday, March 4 we went back up to UW-Madison for the swallow study. That was done first and it went great! Absolutely no aspiration issues so we don't have to worry about him swallowing wrong. It is very difficult for him to get things to the back of his mouth though. He is reluctant to drink anything. I have to keep nagging him. I'm afraid if he doesn't keep swallowing liquids, he will never progress to food. After the swallow study we saw the surgeon and he removed the trach. His speech continues to progress also. He still has little control over his tongue, everything is still numb, but he is able to be understood when he talks. He also has quite a drooling problem right now, but he cannot tell when he is drooling because everything is so numb. That embarrases him, but it can't be helped so he deals with it. So our next appointment is for next Tuesday, with an MO in Madison. I am hopeful that she will agree to the chemo.
So that's it for the update. I'm not feeling very well either. I have pneumonia right now, but I am now on medication so I should be better soon. It's always something! I just hope I will be able to go back to work on Monday. I have missed so much time already, I just have to feel better by then!

Ice Chips, Yum!

Thursday, February 26, 2009: Check-up at UW-Madison today with the surgeon. He removed the remaining stitches and staples from Ron's face and neck. Mouth looks great. He was given a plug for his trach, so he can spend longer times with the ability to speak. The doctor said that once he can leave the plug in day and night for at least 3 days, the trach will be removed. Our next appointment is next Wednesday, so that is our goal. They will remove the trach that day and then he will immediately have his swallow study done. He was given some ice chips in the hospital so they could just see if they would make him choke. He did fine with them, so he is to have them at home as often as he wants. The doctor is just sure that he will be able to eat again. We are so excited! I told the team that he was torturing himself yesterday by watching the Food Network. I came in and said "Doesn't that make you hungry to see all that food?" He nodded...and the worst part was that they were making pancakes at the time--one of his very favorite foods! He has lost 14 pounds since right before the surgery. I have ordered 4 cases of Carnation VHC, which is a very high calorie supplement, like Ensure or Boost but the calories and the amount of protein is higher. He was sent home with exercises to do with his tongue and he is to practice swallowing hard. He is very motivated to eat again and I will feel like I can return to work if he gets rid of the trach, so that is what prayers should be directed for at this time. He is feeling as well as can be expected right now. The only problem we haven't been able to solve is that he is getting very little sleep. After discussing with the doctor today, we got a prescription for sleeping pills to use as sparingly as we can. I think he would be happy to get a good nights sleep every other night or even every third night. It would be an improvement! We have an appointment on Monday with the Chemotherapy Oncologist, so I will update after that.