Cautiously optimistic...

Tuesday, December 2, 2008. It's Ron's 56th birthday today! Guess what he got to do? Have a colonoscopy. What a lucky guy! We were given the choice between having it on his birthday or the day after, in which case he would have been doing the "prep" on his birthday, and as you all probably know, that is the worst part of the procedure. At least now he can have dinner and have a piece of apple pie (his favorite) for dessert tonight. He has gained another 5 pounds since my last post! We went down to Missouri to see my sister and her family over Thanksgiving and she stuffed him like a Christmas goose. Now to catch everyone up on what's been happening since the last post. On Tuesday, November 18, Ron saw the surgeon. He could not see any areas of concern, and his feeling was that the PET scan was done too soon after surgery to be accurate. He told Ron to go ahead and have the other tests done and come back to see him after that. Our next appointment was on November 21st with a Gastroenterologist, to take Ron's history and schedule the colonoscopy. He also did not think there would be cancer found. On November 25th, Ron had his Thyroid scan done.

Wednesday, November 26th was our big meeting with the Radiation Oncologist. It was good to see him again, after 2 years. He gave Ron a thorough exam, and did find a small nodule under his tongue, and had me come and feel where it was. That was the only area that concerned him. He said that he would not agree to re-radiate until we were sure the cancer was back. He told Ron to go back to the surgeon so he could do a biopsy of the area. Only with positive results would he agree to radiation, and he mentioned that it might be a different type than IMRT. If the results of the biopsy are negative, he wants to wait and repeat the PET in January. He also mentioned that Ron has Perineural Invasion, or PNI. I didn't ask anything about it at the time, but have started to search to find out what that means. From what I understand so far, it acts as a scaffold for the cancer cells to spread. We left the RO's office feeling much more positive about the future. There were now three doctors that thought the PET results would be inaccurate so soon after the surgery. Oh, how we hope they are right. Right after the appointment we drove for 8 hours down to my sister's, and had a wonderful time visiting with all of them until Sunday, the 30th, when we drove back home.

Monday, December 1. Ron had an appointment with the chemotherapy doctor today. He said the Thyroid scan was negative. Thank God! One less area to worry about. He agreed with the RO that the surgeon should biopsy the spot under the tongue. Right after this appointment, we had an appointment with the surgeon. He agreed that the nodule was suspicious, but will not do a needle biopsy. Instead, Ron will have outpatient surgery next Monday, where the surgeon will remove the entire nodule if possible, to send to pathology. He said that he is not as certain that Ron cannot be cured of this cancer again, and said that he thought the oncologist was being too "bleak." We just don't know what to think at this point. Ron is very positive about being able to beat this again. I need to draw on some of that strength of his! Today, December 2, Ron had his colonoscopy. The doctor came out and told me that no cancer was found! He did have some small pockets of diverticulosis, but it shouldn't be a concern. Ron can't eat nuts or popcorn anymore anyway without teeth. He suggested more fiber, so I will pick up some supplements, since he also has trouble eating raw fruits and vegetables. So now we wait until Monday, the 8th, to find out the results of the biopsy. Keep praying, please. So far things are looking up!

Post Surgical PET Results

Monday, November 17. We had our appointment with the Oncologist today. The results were not quite what we were hoping for. Ron's latest PET scan now shows three, possibly four more areas of cancer. There are definite areas in the right parotid position, right sublingual, and left thyroid lobe. There was also FDG uptake in the anal area. What this means is that, since the surgery September 30, the cancer has come back in these three areas, and possibly four. The Oncologist really does not think that the uptake in the anal area is anything, but Ron must now have a Colonoscopy to make sure. He also needs a Thyroid scan. The Tumor Board met, and they all agreed that Ron does need Chemotherapy and Radiation again. He will also have a PORT placement again to receive the chemo and for blood draws. So within the next few weeks, we will be pretty busy with appointments.

The Oncologist stressed again that Ron will no longer be cured, just managed. He is planning to use Erbitux for 10-12 weeks. Radiation has not been set yet, but will be soon. The RO is still reluctant, but since the Tumor Board is recommending radiation again, the Oncologist is sure that he will agree. He also agreed with Ron when Ron told him he did not want the PEG tube again. He said that he had the most trouble with that the last time. It makes me a little worried about him losing too much weight, but this is totally his decision. If we get going and he starts losing too quickly, he can always decide that he should have the PEG again. The good news is that he has gained six pounds since coming home from the hospital. I hope to get that number up before treatment starts. If he could, I would like him to gain at least twenty, but I don't know if that will happen! I also told the Oncologist that at some point, we would like to do some traveling around the country, and asked if he would let us know when we should do that. He smiled and said probably when Ron is done with treatment and recovered a little bit we should start.

I am feeling much more emotionally fragile this time around. I'm not sure why, and it is only when I am alone, and start to think too much. When I am with Ron, especially at appointments, I try not to be emotional at all because I don't want to upset him and I need to keep it together so I can write everything down. I just don't know if I'm ready for this horrible stuff again. Ron is though, and if he can do it again, I can too. The Oncologist did say that from this point on there would be no more surgery, and Ron agreed that he did not want anymore. Treatment now will be only chemo and radiation. Ron is ready to go! He has healed so quickly from the surgery. He is now walking without a cane (okay, limping really). His leg looks fantastic. The only trouble he has occasionally now is that the free flap sometimes swells more than others and it becomes uncomfortably tight around his right ear. He says it feels like an ear-ache, but he knows it's not. He is in good spirits though, as always. He's an amazing guy!