Chemo to start...

This Monday was Ron's outpatient surgery to get his PORT for chemo. It turned out to be more involved than that. The "cyst" on his behind turned out to be a "fistula in ano", which is a little more serious than a cyst. I am not going to go into great detail, if you want to know more you can look it up. I don't want this to get too graphic. The surgeon opened and drained the area, so he came home with more wounds than we thought he would. The poor guy just can't seem to catch a break. It should resolve itself without too much more intervention. The only worry is that once Ron starts chemo, he will me immuno-compromised, and open to any infections, so that could play a part.
Tuesday was supposed to be his PET scan at Burlington but the machine was not working, so they made us an appointment bright and early Thursday morning at a different hospital. After his PET scan, we came home so he could "eat", and then went to our chemo training appointment. It turned out that he will not be wearing a pack at home at all. He will be starting Erbitux next Thursday, the 23rd. It will then be a weekly process, just until...
It depends on his reaction (or lack of) to the chemo. The MO may also add Cisplatin to the Erbitux. That will depend on the reading of the PET scan from today. The MO is gone for this week, so I'm sure we won't hear anything about the PET results until next week.
On another note, I was surprised this week to find out that our sweet little niece is planning a fundraiser for Ron over Memorial Day weekend at Piggly Wiggly in Lake Geneva. There will be a brat wagon set up for three days, so if you live close by, come out and eat a brat for Ron!
There is not much more to report on his health. He is just very worn out, but he can't sleep for very long at a time, so he is up and down all day and night. I still don't think he takes enough of his pain medication, but he is stubborn! Even though I have had both Doctors and Nurses explain the pain cycle, and how much easier it is to control if you stay on top of the pain, and don't wait until you're in agony to take something, he will not listen. He may need a swift kick in the sore butt :)!

Round Four

This is a post I hoped I would not have to write. The cancer is back. We had an idea that it was, but it wasn't confirmed until yesterday up at UW-Madison. About 2 weeks ago Ron noticed a lump in his right cheek. It seemed to vary in size from day to day and it was very painful. The last week of March was my spring break from work and we did go to Missouri. It was there that I really started to think that something was wrong. Ron slept from 12-16 hours a day the whole time we were there and he didn't even realize he was sleeping that much. And to my sister, the nurse, his fatigue was very telling.
We had a normal check-up with the surgeon scheduled for Wednesday, April 8, and as soon as he came in and examined Ron he said it didn't look good at all. He did a punch biopsy and sent it to pathology to be read immediately. We were then sent to a Radiation Oncologist there, where the possibility of brachytherapy was mentioned. The RO thought that if the tumor was very localized, the therapy would work for Ron. So we left there knowing that although the cancer was back, we had a radiation option, which surprised us.
Thursday, April 9 we had an appointment with Ron's longtime Medical Oncologist. He said that brachytherapy at this point would do Ron more harm than good. It would be good if the tumor was localized, but he said that Ron had cancer all over his mouth at this point and that the therapy would be very hard on him, and give him no benefit. He is going to start Chemotherapy in two weeks. We don't know for how long. We have an appointment on Monday to get a new PORT installed, Tuesday for a PET/CT fusion to see if the cancer has spread, and Thursday for Chemo training. I can only assume by training that it means that Ron will have a portable pump hooked up for days at a time at home. We are not really sure at this point what the Chemo will be. The MO mentioned Carboplatin, Taxol, and 5FU, with the addition of Erbitux possibly.
That is some heavy duty chemo, so of course I am worried about Ron's ability to withstand it. His first chemo session is scheduled for April 23.
This is the second time that the cancer has come back within 8 weeks of a major salvage surgery. Further surgery will probably not be an option, but I can't say for sure. Ron is willing to do much more than I would, but he knows that no matter what, his family is all here for him. We are not giving up by any means. I am just incredibly sad that he has to go through this again. Please pray for everyone with cancer, as they may be closer than you think.

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!