Aftermath...

Ron's last day of treatment was October 28, 2005. While this day was certainly a cause for celebration, it was by no means the end of his problems. In fact, he actually had his worst days in the weeks following. He continued to be in a lot of pain, which meant he was still on the Fentanyl patches, also taking either Tylenol 3's or Vicodin. Now, this is not always explained to patients, but that many painkillers have a bad side effect of bowel impaction. I will try not to get too graphic, but I think caregivers should know that this may happen. Ron did, in fact, get impacted and I had to "assist" him in relieving it. Thankfully, I used to be a Nurses Aide, so I was equipped to handle this. It was not a pleasant experience for either of us, but when your loved one is in pain, you do whatever you can to relieve that pain. He had been taking stool softeners all along to try to prevent this, but they did not. So I'm just pointing out that this may happen. And, as you can imagine, that only adds to any other discomfort that is happening.

Ron also vomited more in the two weeks following treatment, for some reason. He lost a total of about 50 pounds by the time he was all done. He was still also going in for blood tests, and continued to receive Aranesp for low RBC's and Neupogen for low WBC's. I was quite worried at this point about his low immunity, and the possibility of him catching something from either myself, who works in a High School and is constantly around sick teenagers, or one of our own teenagers being ill. I think if he had caught even a common cold at that time, he would have ended up in the hospital. Thankfully, that didn't happen.

By the middle of November, his blood work started coming back in the normal range. He reached his lowest weight of 167. Before cancer, his weight was about 225. He had huge biceps from farming and a fair sized "beer belly", even though he didn't drink all that much beer. At treatments end, he had really no muscle mass left. It would be a long road to build himself up again. The first week of December, he had both PET and CT scans, and they both came back clear! YAY! Looks like all the pain was worth it.

The rest of December and January was spent with the Dentist and Oral Surgeon preparing his mouth for dentures. He had to have some bone shaved from his gums, and let that heal. He got his dentures February 1. His Port and PEG were removed on February 5, 2005. That was a good day, to get that PEG removed. As much as we know he needed it, it was a constant source of irritation to deal with. Two weeks after getting and wearing the dentures, he had a check at the Dentist, and he noticed a "spot" on the floor of Ron's mouth. He was told not to wear the bottom denture to let it heal. On March 1st, at another check, the Dentist found another "spot". Now he was sent to the Oral Surgeon, who in turn sent him to his ENT Surgeon that did the original surgery. It was decided that he could take no chances, so another surgery was done on March 13. Thankfully, it was completely benign!

For the next year, Ron went for CT and PET scans every three months. Nothing ever showed up on any of them, thank God. He continued to struggle with the teeth issue. He now only wears the upper denture, and that is usually only when I "make" him. He would be just as happy to not wear them at all, and can even eat steak with no teeth. Don't ask me how, I don't think I could do that! So 2006 was a year of adapting to a new normal, healing, getting clear scans, frequent doctor visits to make sure no other issues cropped up, and Ron getting back to full-time farming. Oh, by the way, his new hip was working great now, too! So glad he had that hip replacement.

Mid-treatment

Monday, October 3, 2005: Saw the Radiation Oncologist before his IMRT. Ron's mouth is full of small ulcers (called muscositis) from the radiation. Between the nausea and the mouth sores, he is finding it much harder to eat anything. Even drinking liquid hurts. The RO told us that now is the time to depend on the PEG tube to get most of his nutrition. The RO also started Ron on Triple Elixir to swish in his mouth before drinking or taking pills, etc. It consists of xylocaine to numb the area, Zovirax to heal the sores, and Maalox to coat the mouth and throat. Ron said it tastes horrible, so sometimes he just swishes and spits instead of swallowing it, but it does help numb the pain for a little while. He is feeling much more tired and spent these days. Because of his pain though, he does not sleep much. He is still only taking Vicodin or Tylenol 3 and then only when I make him. He is a stubborn one. He continues to do some chores, but by the time we get home from radiation, he is just worn out so he isn't doing the evening milking anymore. Thank goodness he farms with his brother, nephew, and our son.
Wednesday, October 5: Second Chemo. He is getting 20% less Cisplatin this time because his blood work is showing low WBC's and RBC's. This is not at all unusual--just another side effect of chemotherapy. If his numbers get too low, there are medications he can get to help.
Sunday the 9th, Ron is halfway through treatment! He is now down about 30 pounds. His bloodwork on October 12 showed an even lower WBC count, so he was given a shot of Aranesp. On the 14th I called and asked for a prescription for Ambien so he could get some sleep. He had a fairly good weekend. The following week passed fairly normally with IMRT every day, but his mouth was getting worse. He was getting more sores and now white patches also.
Monday, October 24: We saw a different doctor before radiation. He diagnosed Ron with thrush in his mouth, so he was given Diflucan for that. He also prescribed Fentanyl patches for the pain. This worried me a little because I know how powerful Fentanyl is, but it was a godsend. For the first time, I think Ron actually got some pain relief. He was also given Gelclair for his mucositis. These were little miracle packets! The Gelclair actually formed a kind of barrier in his mouth, which allowed him to drink and eat some things much easier. I was kind of glad we had to see a different doctor. I'm not sure his original doctor would have given him so much relief with that one appointment!
Wednesday, October 26, 2005: Last Chemo!! He is given 20% less Cisplatin this time, also. The following morning his blood work showed low WBC's again, so he was given another Aranesp shot. He also got his IV fluids. Friday the 28th was his last IMRT! He got a certificate for completing treatment, and got to ring the bell to celebrate the end! My sister actually came from a different state to be here for the occasion. She has been such a source of strength for me throughout this whole ordeal. She is an RN, and has been there to give sound advice when needed, or just to listen to me cry when I needed to. I could never thank her enough for the support and love she has given to all of us.
Now treatment is over...it's time to start healing!