In Honor of My Husband, Ron

Tuesday, October 28, 2008

Getting out of the hospital...

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.

Saturday, October 4, 2008

Post Surgery Days

Wednesday, October 1. When we got in to see Ron today, he looked better than expected. He is on a PCA pump set to deliver 1 mg. of Morphine every 10 minutes, and he uses it regularly. The surgeon came in and deflated the cuff on his trach and asked him to count to 10. His voice was very raspy, but it was there. He said that Ron would do this several times a day and that would help wean him off of the trach. He does have to be suctioned because he coughs up thick secretions. The surgeon is hoping to be able to remove the trach on Friday. Ron may be able to leave the SICU tomorrow. The doctor said again that the cancer was a lot larger than they thought. Ron said that his mouth doesn't hurt, it just feels strange. Still the only pain is from the leg.

Thursday, October 2. When I came in today Ron was sitting up in a chair with a smile on his face. He is now able to eat some ice chips. The pain is much the same, though. He is to get out of bed 3 times a day, without putting any weight on his left leg. Later that afternoon, he did start running a fever on and off. He is not leaving SICU today.

Friday, October 3. This morning, Ron still had a fever. He is now taking Tylenol tablets by mouth. They sent a culture of his trach secretions to check for infection. The right side of his neck looks very swollen today. The fever is what worries me, but he is on Vancomycin, a very strong antibiotic. He also got a transfusion this morning, as his blood count was low. The doctor stressed the importance of him getting out of bed to prevent lung complications. I had a frustrating exchange with the surgeon today. I know he is one of the best in his field, but he doesn't encourage conversation. I started to ask him about the cancer and I said, "I know you said that the cancer extended back to the tonsil, " when he interrupted me and said "It was IN the tonsil." So I said, "So you removed the tonsils then?" He looked at me like I was crazy and said, "No, he would be in here for another week if we removed them. He wouldn't be able to swallow at all." ?? I was left puzzled, but he really makes me feel like I should not question anything. I am assuming that he did in fact remove the right tonsil as the cancer was in it. At least I sure hope so! It was decided that the trach would be left in since his neck has so much swelling. Later that afternoon, Ron was transferred to a regular room.

Saturday, October 4. Good news! The fever has stopped. Ron looks much better today. The swelling is down and he just looks like he feels better. He is still using the PCA regularly though. I do worry how he will get along when it is removed. The doctor was in today and removed his central line, so that is one less tube and drain to worry about. Speech therapy came in and put a Passy-Muir Valve on his trach so he can talk for about an hour at a time. He sounded great. It was nice to hear his voice again. It is harder for him to breathe while it is on, so it tires him out. I will be so glad when that trach is removed. He started coughing at one point and blew the valve across the room! Thankfully, a nurse was in the room so she cleaned it off and replaced it. One problem today is that he is not getting up to a chair since he was transferred. The surgeon left orders for him to be up but the plastic surgeon has to agree, and he has not seen Ron since he was transferred. It is maddening! They could certainly get him up to a chair without him having to put any weight on his left leg. If this isn't resolved by tomorrow, I'm going to have to pitch a fit. I worry that he will end up with pneumonia because he isn't moving enough. He is sleeping much better since the move though, which was much needed. Hospitals in general are not very conducive to rest and recuperation. It will be so good to get him home! I am now thinking that if he can get rid of the trach on Monday, I doubt they would discharge him that day too. I hope they do, but I am kind of thinking it will be Tuesday. Tonight my oldest daughter decided to cook a "Thanksgiving" dinner on Tuesday, and I said that at least Ron should be up to mashed potatoes and gravy by then. And we are so thankful to have him with us! I will finish his hospital days in the next blog.

Surgery Day

Tuesday, September 30, 2008. The big day arrives. Ron, myself, our oldest daughter, and my sister (Yes, she came up again to be there for me--I love her) drove up to St. Luke's early in the morning. Ron got all checked in at Same Day Surgery. We did a lot of the sitting around waiting game. The anesthesiologist came in and I must say he was fantastic. He explained every step they would take in great detail, and he was so funny and personable it made all of us relax. The plastic surgeon came in also and explained that he would use Ron's left leg since his right leg had previously had the hip replacement and also had vessels used for his triple bypass. In between these visits we waited. And then we waited some more. The OR nurse finally came in to get Ron, but couldn't since the operation site had not been marked. So we waited some more while she tried to get ahold of one of the doctors to come down and mark him. Finally the plastic surgeon came back, put a small dot on his right cheek and that was it. One final kiss and they wheeled him down the hall. I told him to think of Baywatch and girls on the beach. That got a smile. Only after he was gone did I allow myself a little breakdown. That part of watching him go to the OR and not knowing what's going to happen is so hard.

The rest of us headed to the ICU waiting room, which was very nice. I had been there before for his bypass surgery, so it was comfortable. The minutes just crawled so slowly, though. He went into surgery right about noon. I brought a whole bag of book review magazines to try to select books to order for the high school, but I couldn't concentrate at all, so I gave up. Mainly, I just sat there and worried about what could possibly be happening. At about 4:30 the OR called to give an update. My sister actually took the call, as I had just stepped out. They said that Ron was doing better than they expected. My sister asked if there was bone involvement, but the nurse said that she was not allowed to say. My sister called my cell phone and I came back up right away. When she told me what was said, I was encouraged somewhat, that at least he was doing okay.

Finally at around 9 p.m. we were told that he was in recovery. We then had to wait to speak to the doctors. The plastic surgeon came in and said that he did not require a full reconstruction of the mandible. The bad news was that he had already removed the section of bone from his fibula, so they just threw it away. He did use quite a bit of his leg tissue to create the large flap and then a skin graft from his thigh to top it off. Then the surgeon came in and said that the cancer was more extensive than they originally thought it would be. He said that the lesion extended from the cheek all the way back to the right tonsil. Also, he removed about half of Ron's mandible that contained cancer. He said that since Ron's mandible was quite big, he could lose half of it and still have a functioning jaw. He also scraped down to check the bone marrow, and that was negative. He also got a trach because of possible swelling in his airway. The cancer was now stage IV because of the bone involvement. They said that he did very well and was already awake.

About an hour later we were finally able to see him in the the Surgical Intensive Care Unit. He had tubes coming from almost every orifice. The actual line of stitches was not as bad as I thought it might be. He looked fairly good but was pale. He was still under the influence of the anesthesia and morphine, which I'm sure was for the best. He only complained about pain in the leg, and he was not a very happy camper when I told him that they didn't even use the bone they took out. But truly I cannot fault the plastic surgeon as they really thought they would need it, so it had to be ready to go. His leg was encased in what appeared to be about 800 feet of gauze. He had a drain coming out of it, and his thigh had a large area where they took the skin graft. He also had a Central line, two peripheral IV lines, and an arterial line to monitor his blood pressure. After knowing he was in the best hands, we finally left the hospital.