In Honor of My Husband, Ron

Saturday, April 25, 2009

Palliative care...

"Palliative care (from Latin palliare, to cloak) is any form of medical care or treatment that concentrates on reducing the severity of disease symptoms, rather than striving to halt, delay or reverse progression of the disease itself or provide a cure". We have now entered the palliative portion of Ron's care. We met with the MO on Thursday morning. He said that the PET scan showed that the main tumor, in Ron's right cheek, which was less than 1 cm. on April 9, is now about 5 cm. In addition, there is involvement in his left neck nodes, and his trachea. What this boils down to is that there is no longer a surgical or radiation option. Ron started Erbitux that morning. The first infusion lasted about 3 hours, but the remaining weekly infusions will only take about an hour. Erbitux is a form of chemotherapy called targeted therapy. It actually is a highly active IgG1 monoclonal antibody targeting the epidermal growth factor receptor (EGFR).
Erbitux has been well proven to shrink tumors. This is the goal of Ron's care at this point. We would like to be able to buy as much quality time as we can. We all accept that Ron will not be cured of this horrible cancer. There is a possibility that it may have metastasized to his brain. He will go for a brain MRI on Tuesday afternoon. He has been having a lot of bad headaches lately, but we don't know why. After his first Erbitux treatment, he was completely wiped out. I hope that he will be able to handle them better in the future. He is now on Fentanyl patches in addition to his Roxicet for pain. This seems to have really helped so far. He also used the Fentanyl patches when he was going through treatment in 2005, and they worked very well in controlling his pain. Ron did throw up in the middle of the night after the first treatment, so he also started taking Compazine for nausea.
Palliative care is not the same as hospice care. With palliative care, we are still doing whatever treatment we can to keep Ron well for as long as possible. We are not ready to give up yet! If Ron reaches that point then we will involve hospice, but hopefully that won't be for a long, long time. The MO told us that with the Erbitux, patients who get an acne-like rash are responding well to the treatment, so pray for pimples!

Thursday, April 16, 2009

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 :)!

Thursday, April 9, 2009

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.