In Honor of My Husband, Ron

Sunday, September 28, 2008

Deja Vu...

All was well with Ron until July of 2008. He had continued to have CT and PET scans every three months since 2005 and they were all clear. Things had really returned to "normal", at least our new normal. He could and did eat anything, even without teeth. Sometime in July he had eaten some potato chips and felt like one had made a sore in his mouth, on his right cheek. He had me look several times with a flashlight, but I really could not see any obvious wound. There was a small white area, and again, as he was not scheduled for any doctor visits for months, I told him we should go to his surgeon so he could check it out. I made the appointment for August 13, 2008.

I was not at all prepared for what we were told at this appointment. Later that night Ron said that he knew what was happening but didn't want to tell me. So the surgeon looked at Ron's cheek and said "Oh yeah, that doesn't look good at all. I think it's cancer again." He then showed me the lesion, and I swear it was so big I don't have any idea how I could not see it at home. The surgeon felt that this time there would be bone involved, which would have to be reconstructed. Since the local hospital, where Ron had his original surgery, did not have a Plastic Surgeon available, he told us that he was sending us to his brother in Milwaukee. His brother is also an ENT Surgeon, one of the top in his field. We would consult with him and he would bring in a Plastic Surgeon to do the reconstruction part of the surgery. Ron took all of this in stride, as he always does, but I can say that I left there in shock and just devastated.

When we got home, Ron went out to the barn to talk to his brother. I was sitting on the steps outside having a cry when Ron came up and just patted my shoulder. I said "I just didn't want you to have to go through all this again", and he made a dismissive motion with his hand and said "Ah, this is nothing. I'll be fine." He really amazes me. I don't know how, after all he has been through, he can keep his positive attitude. I then went in and called my sister, who is my best friend and counsel. She always helps me cope and helps me think of things to do first. She suggested that we should call Ron's Oncologist and let him know what was happening, and ask for a PET and CT scan immediately. Ron's appointment with the surgeon in Milwaukee was scheduled for the following week, but we felt that we should get scans done first, in case we were looking at more than a localized lesion. The Oncologist agreed, and also wanted to see Ron. Later that evening, I told the kids. Well, they're not really kids anymore, they are all young adults. Our youngest is 20, and we also have a niece living with us who is 19. It went as well as it could, I suppose. They were all very upset. Our oldest daughter is engaged and planning to marry soon, and I told her that she can't change her plans. Life cannot be put on hold, and I told her that if humanly possible, her dad would be there at her wedding.

On Monday, August 18, we saw the Oncologist. He felt the lesion and said it was about 3 cm., a Stage II at this point. He reminded us, as he always did, that this cancer was particularly difficult to "cure." He said that Ron had done so well for three years, he was hoping that he would be one that would make it. Well, didn't we all. Cancer is such an insidious disease in more ways than one. Once you or someone you love has been diagnosed, every single day you think about it. Oh, that pain, could that be the cancer again? Oh, he's so tired, I wonder if the cancer is back. Every little thing brings the thought of cancer to mind. And with every year that passes with the cancer gone, you get a little bolder. Thinking there's no way it could come back now, look he's made it for three years already. I know in my mind, I was waiting for the 5 year mark. His Oncologist had told us that they never consider this cancer "cured" even after 5 years, but in my mind, that was the marker. I thought that if Ron made 5 years, we would be able to relax and perhaps not think about it every day anymore. Ah well...

Ron had a PET scan on the 19th and a CT scan on the 20th. He also had a routine appointment with his Cardiologist on the 20th, where he had an EKG, which was fine. I (kind of) jokingly told the Cardiologist that the low-fat diet was out the window for now, and that I had asked Ron to please gain about 50 pounds in the next week. I just remember how much weight he lost the first time, and with what sounds like even more surgery on his mouth, I imagine he will lose quite a bit of weight. The doctor said not to worry about diet at this point, just warned him to try not to take in too much salt. Okay, that we can do. Ron's weight at this visit was 183 pounds. The doctor wished us all the best with the upcoming ordeal. On the way home we stopped to get a few groceries, and while in the store, the Oncologist's office called Ron. They wanted to see him the following morning as soon as the office opened up. I of course, being the glass half-empty person, thought this must mean that the PET was worse than expected. Unfortunately, we could not go to the Oncologist that early because our appointment with the surgeon in Milwaukee was for 10:30, so we would be leaving at about 9 a.m. They told Ron to call after our appointment was done in Milwaukee, and we could stop to see the Oncologist after that.

Thursday, August 21. The big appointment with the Surgeon was here. I will just say right now that he was nothing like his brother. And in case I haven't said it before, I like and respect his brother very much. He did the usual exam and went over Ron's history. He said that it would be a 6-8 hour operation, and more than likely Ron would have to have a Fibular Free Flap, probably a tracheotomy, a nasal feeding tube, and that he would be in the hospital for a week. He would set up an appointment with the Plastic Surgeon he works with, who could tell Ron more about the reconstructive aspect of the surgery. We left there and went to see the Oncologist again. As soon as he came in the room he said, "Oh Ron, we will not cure this cancer." He went on say that he had talked to the surgeon, and the surgeon basically asked why we were bothering to do the surgery at all. The Oncologist told him that we were going to do everything we could to save Ron. Wow, that reinforced my first impression of the surgeon, that's for sure. He also told us that Ron would have Chemo again, and that he would discuss with the RO the possibility of further radiation. One of the things Ron is dreading if he has chemo again is, the first thing that hits you when you open the clinic door is the stench of really strong, almost burnt coffee. This aroma permeates every inch of the place. Now, Ron loves coffee, but when you are already nauseous, that smell just further turns your stomach. Even I would leave there nauseated. I can't believe that they haven't had tons of complaints about that, with all of the cancer patients they see every day.

Our appointment with the Plastic Surgeon was on August 28. He was a very personable and funny man, which always makes Ron feel more comfortable. He did an exam and took several photos of Ron's mouth. He agreed with the surgeon that it would be about a 6-8 hour operation, possibly longer. He is fully expecting mandible involvement, which means that they will take the middle section of a Fibula bone from his leg to reconstruct the jawbone. He also said he will probably do a free flap from a forearm to fill in the cheek area. The main incision will be from the center of his bottom lip, down through the chin, and over to the right on his neck so they can then basically "peel" this area back to work. Ugh, I hate even writing that. I just can't imagine the pain he will be in. Ron does love his scars though, so he should have plenty to show off after this. He has a very warped sense of humor and I think he loves the shock factor.

So now we wait. Ron got the call the following week that his surgery was scheduled for September 30. I was quite upset by that. It was a whole month away! I felt that there should have been more of a sense of urgency about it. He was also now feeling quite a bit of pain that was keeping him awake at night. I called the Oncologists office and asked for pain medication. I'm not sure who I talked to, but I had never dealt with her before. She acted like we were drug seeking, and said that they would call in a small prescription, but that if he had more pain, he should call the surgeon. The Oncologist also felt that the date for surgery was not too far away, so we left it at that. I still felt quite nervous about that, though. I did end up calling Ron's original surgeon to ask for more pain medication, and he called Ron back personally to tell him how important it was to stay on top of the pain. He ordered a more than adequate supply of Vicodin, thank God. If they only knew that I usually have to practically order him to take it at all! We are now also smarter about opiates and he is also taking Colace, Dulcolax when needed, and prune juice to prevent problems.

We had one more appointment with the Oncologist on September 25. Ron had blood work done, and the doctor did another examination. He was shocked at how much bigger the lesion was, and felt that now for sure there would be bone involvement. This is where my anger comes from. We have waited for over a month now since he was diagnosed with the recurrence, just giving the cancer plenty of time to grow at will. So now, he will have to have a more extensive surgery that may not have been necessary if they would have done it immediately. Sometimes you just want to scream at somebody, but who??? The Oncologist again said that from now on the cancer will be treated, not cured. He said that the surgeon will probably say again that they got it all, but it will not be true. He said that after treatment, we may get another three years. I so hope he is wrong about this, and that Ron can beat the odds. If it were only depending on attitude, Ron would beat it for sure. He is the most positive, ridiculously up-beat person I know. I am naturally kind of a depressive, moody person and he has made me laugh at least once a day for 25 years now. I can't think of anything better than that...except more of it.