Oh, I am so mad! I just spent about two hours typing away, detailing the remaining days that Ron had to spend in the hospital and it disappeared. I am not typing it all again, I will just say that from Sunday, October 5 to Saturday, October 11 was a very long week. Ron had complications with abdominal distention. The doctors tried many different things to try to get rid of it including a Gastrografin enema, an NG tube, and even IV Erythromycin just for the side effect of diarrhea! What a week. By Saturday, he was more than ready to get out of there. His trach had been removed on Thursday, the NG tube on Friday, and by the time I left him on Friday he was eating roast beef for dinner! He had me come up extra early on Saturday morning to take him home, but that went about as well as the previous few days. We finally got out at about 2:30 p.m. and Ron wanted to stop at Omega to have an omelet before we went home. On the way home he had me drive past every field they own to see what had been done while he was gone. He was in the hospital for 11 days, longer than he had ever been away from home or the farm before, or ever wants to be again! We were told to make follow up appointments with Ron's original surgeon (this surgeon's brother) and the plastic surgeon.
Thursday, October 16 we saw the surgeon, who said that he was healing very well, and that the free flap looked good. He told us again that the cancer was much larger than originally thought, but that his brother had removed it all. We knew he would say this, and of course we hope he is right, but that's what he said the first time, too. We then drove up to the plastic surgeon, who removed the 42 staples from Ron's calf where the graft was placed. He told us to leave the donor site on the thigh open to air from now on, but to continue to dress the graft site. In the days following, both sites were really oozing a lot of junky looking stuff, but they never looked infected. I guess it was normal, but the donor site on the thigh continued to look worse each day. I am posting photos (before staple removal), so if you are squeamish, you may want to scroll past quickly.
By Monday evening, the 20th, the bottom half of the donor site was open and oozing and sticking to Ron's clothing, so I cleaned it off and started dressing it again. I called his primary doctor and we went to see him on Tuesday. I was worried that I wasn't taking care of his wounds the way I should but he said they both looked good, and that his thigh just needed a little more time to heal. Other than his leg, Ron is feeling good. He only takes pain medication a couple of times a day. He usually takes two Vicodin to help him sleep at night, also. He is still using the walker in the house, but when we go out he uses his crutches or a cane. He can eat pretty much anything put in front of him, as usual.
Thursday, October 23. We saw Ron's Oncologist today to discuss future treatment. He came in the room and again said that this cancer is incurable. I said that we understood that it would probably come back at some point, but for now Ron is willing to fight it again. He said that he is recommending 10-12 weeks of Erbitux, which I have read is given weekly. I asked about having radiation again, and he paused. I asked if the radiation oncologist was reluctant and he nodded. He said that the RO is worried about radiating the free flap and the damage it may cause. I am not sure if other spouses face this problem, but for us, when we go to see any of Ron's doctors, I am usually the one talking to them and asking all the questions. Ron will just sit there and smile and nod his head, so I feel like I am the one that has to research everything so I will know what to ask and understand what is being discussed. I don't want anyone to think that I take over, but Ron just will not ask anything. He just goes along with whatever they say. I told the doctor that Ron and I have already discussed the point at which he will say enough, but that this is not it. He is ready and willing to fight, and I expect his team to back him up and help him as much as they can. He agreed and said that he would talk to the RO again and try to convince him to treat Ron again. He said that the RO may even call Ron himself and I said I hope he does so Ron can tell him in person that he wants to do whatever he has to again. We are looking for as many years as we can get. The doctor then dropped kind of a bombshell, at least to me. He said that one thing that confused him was that the tonsil was not part of the specimen that he saw from the surgery. He read the surgical report and the tonsil was NOT removed, just "shaved" until pathology said it was clear. He then said that the surgeon would have been a "hero" if he had removed the entire tonsil. Then why didn't he?? This really made me mad and confused. If there was ANY cancer in it, why wasn't the whole thing taken out? I just don't understand, and now we will never see that doctor again, as he gave Ron's case back to his brother for follow up. The doctor finished by saying that he wants Ron to have a PET scan again next week, and then see him again in three weeks, after he has healed some more. I will write again after we get the PET results. I am sure hoping his cheek doesn't light up like it did before surgery.
Tuesday, October 28, 2008
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