We went in this morning to have the 5FU drug pump stopped and removed because her nausea was bad all the time. We were originally scheduled to go in around 4 this afternoon, but because of how bad she was feeling plus she was starting to get sores in her mouth, we wanted to try and minimize the side effects over the next couple weeks. It turned out good that we went in as they managed to get us in to see the PA that works on Tuesdays. She was very thorough and did everything she could to try and help with Barbara's problems and discomfort. She was given IV fluids while we were there plus an IV dose of one of the nausea medications. We also got the two we have been using refilled plus one more to try and get the nausea under better control.
In addition to the sores starting to form in her mouth, Barbara has developed a rash and sores on her skin in a couple places that her clothes rub against. The PA looked at that as well as her mouth and prescribed some additional medications to try and help minimize both of those. The rash and sores on her skin are a new issue but it sounds like it is not uncommon given everything Barbara has been going through. Hopefully the medication will help at least the skin sores heal quickly although the mouth sores will likely take longer since it was caused by the Chemo drugs which are still in her system.
We also let her know about Barbara's restless leg syndrome which has been getting worse over the past few days. It turns out this could be caused by low iron levels so they took blood to test her levels. I just got a call indicating that her iron levels are actually above normal, so that is not what is causing the restless leg issue. Not sure what we will do about that now.
Because of her reactions, the PA decided we needed to get in to see the Oncologist (the one leaving in two weeks) and they pushed some scheduling around to get us in to see him on Thursday. Since we have an appointment that day, Barbara will get her Neulasta shot then rather than tomorrow. Doing everything on Thursday means no trip tomorrow and we get to see the Oncologist to talk about the plan going forward. It also probably means no trip next Tuesday to see the PA. At this point I am not sure Barbara is up to going through another treatment unless it is something with much fewer side effects especially if there is limited benefit to these additional cycles. We want to understand better how much real "risk reduction" is involved in additional treatments given the results to date and that she has had one treatment after surgery. With the very positive pathology results from the surgery, it is questionably (in our minds at least) how much benefit the additional treatments would be. Clearly there is always some risk that there are cancer cells that are undetected running around in her body somewhere and that was the purpose of the Chemo after surgery (to clean these up). So there was no question about doing at least one cycle, but I am sure there is some amount of diminishing return on each additional cycle. I doubt anyone can give us any solid numbers on the actual risk reduction of additional treatments, but my gut (and I think the Oncologist's which we will try to confirm on Thursday) is that the actual probability of the additional cycles finding any random cells is pretty low in her case. Of course, the most aggressive thing to do would be to continue the treatments with the strongest drugs available, but with everything she has been through, we are not sure the additional suffering and misery is worth the potentially very small benefit. We will know better after seeing the doctor on Thursday plus we should know better how bad the mouth sores may be this time by then.
A little note from me on all of this: Unless you have gone through what Barbara has gone through with the Chemo and major surgery, it is impossible to understand what it is like. Even though I have been with her every day through it all, I can't really understand myself although I have been trying. However, I know in general how hard some of it has been and how strong she has been to stick it out this long with as good of an attitude as she has had. She clearly has a lot to live for and this has been key to everything she has done. However, everything has a limit and I think she is approaching that limit especially given that (if true) there is a high probability that the cancer has already been destroyed and any additional suffering has a low potential of reducing her risks further. Of course there is always a risk that it will come back and if it does, we will handle it then whether we continue with an additional cycle or two now or not. I hope everyone understands the difficulty of all of this and how hard many decisions we have had to make have been (and will continue to be).
Everyone's prayers and support have been very important through all of this and that continued support and encouragement will be critical no matter what path we chose going forward. However, the last thing she needs would be for anyone to question our decisions over the next couple weeks, so please support whatever we decide, especially to her. The mental toll of all of this has been as great as the physical and her feeling that she has everyone's support in our plans is critical to her continuing to heal. I hope you understand and thanks again to everyone.
I will update everyone on what comes out of our meeting with the Oncologist on Thursday and hopefully we will have at least a basic plan for going forward at that point.
Wayne
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