In Limbo...

Sunday, March 22, 2009: After our meeting with the Medical Oncologist up at UW-Madison, we have realized that it is best for Ron right now to not do chemo. She explained that, although it is important to be proactive from now on, chemo right now would do more harm than good to Ron. She agrees with our other MO that the cancer will most likely come back, probably fairly soon. She recommends getting a PET scan again in May and see where he is then. He is still healing from a huge life-altering surgery and still trying to get back to "normal", whatever that may be from now on. He has definitely been through the mill this time. He is tired much of the time, but cannot rest for long. He does a lot of wandering the house. It is so hard for him to sit around. Once in a while he has gone out and talked to the guys in the barn, or gone out to shoot guns, but he is so bored. His main nutrition right now is still through the PEG tube. He gets three meals a day using Carnation VHC and Ensure Plus mixed together. He is also swallowing better everyday. He still has a pocket in his mouth that gathers liquid and he has a lot of trouble trying to get that to the back of his throat. He usually has to spit out a small amount. He also is having a lot of drooling going on. He can't really tell when it is happening, because he can't feel it. His speech is much different also. We do understand him generally, but sometimes he has to repeat himself.
Another problem cropped up unexpectedly, too. When he got home from the hospital, he complained about a sore on his behind. I looked and thought it was a small bedsore from his being in the hospital so long. I kept it clean and covered and for a couple of weeks it didn't bother him anymore. Then one evening he told me that it was really hurting again, so I looked and I was shocked! It was actually a Pilonidal Abscess, which had burst open. I won't get too graphic here but it was a mess! So I called his general doctor the next morning and got him right in. The doctor thought that a surgeon should look at it, as it may have to be surgically drained. Just what he needed! He was put on antibiotics for ten days and we saw a surgeon the following week. Thankfully, he said that it looked really good now, and he felt that the worst part was over, just to keep it clean and not worry too much about it.
The next day, Tuesday, March 17, we saw Ron's original ENT surgeon from three years ago, just for a check-up. He was amazed at how quickly Ron has healed in just a month. He said everything looks good, and we have no reason to see him anymore since we are now being taken care of at UW-Madison. We will miss him, he has been wonderful to Ron.
Wednesday, March 18 we were back at UW-Madison to see the swallow specialist and also to follow up with the surgeon. He is swallowing quite well, and really impressed the swallow therapist. We were told that we could move up to very soupy soft foods. The surgeon also said he is doing great, but he will keep a close eye on him from now on. We will see him again in three weeks. Our appointments are finally slowing down to a manageable level, at least for now. He only has one appointment this week just for blood work. The following week is my school's Spring Break, so we are planning to go to my sister's in MO. for a few days, just to get a change of scenery. Can't wait! Thanks to all for your cards! Ron loves getting them.

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!