Stay the Course

It has been quite a week...lots of things to write about (almost TOO much in fact -- my head is spinning.) For now, though, let me share the update on my doctor's appointment and I'll write about the other stuff in a separate entry...

So I met with Dr Gullion on Thursday. The night before, though, I had a long conversation with my neighbor Michael (the one who is a GI oncologist at UCSF). I will weave their comments together below since they are very related:

1. I shared with both Michael and Dr Gullion the fact that I had the really weird hand cramps last week. I thought that this was all part of what they call "neuropathy", but both Michael and Dr G think that the cramps are actually due to an eletrolyte imbalance, not neuropathy. Dr G decided to add tests of my calcium and magnesium levels to the blood work that I am having done on Saturday to check my levels of each of these. I'm not sure what the "fix" is for this other than Dr G said I need to drink lots of Gatorade next week.

2. I also talked with both of them about the chest pains that I have been having. This is really the only symptom that still remains and at this point it's pretty mild. In fact, I was able to go to the gym today and ran a couple miles. But the cramps were bad enough last week to be pretty scary for me and so I wanted to get their advice. Michael thinks that the chest cramps are actually due to the 5-FU drug, not the Oxolyplatin (I assumed that it was the Oxolyplatin because I didn't have anything like this when I was on 5-FU in the beginning.) Michael said that there are some "anti-spasm" drugs that we can try to see if that helps to control the cramping, but first he recommended that I have an EKG stress test done in order to make sure that my heart is doing okay. Dr G totally agreed and I am going in on Monday morning before my chemo appointment to be tested. If everything looks okay, the cardiologist told me today that he will give the "green light" for me to continue chemo, which I guess is fine by me...I told him that I will have an easier time accepting the chemo each week if I know that I am not doing permanent damage to my heart.

3. When I mentioned to Michael that Dr G has been giving me an infusion of calcium-magnesium during each chemo (to help prevent neuropathy) Michael grew quite alarmed. Apparently, there is some extremely recent (within the last week) research which shows that adding this to the chemo cocktail actually makes Oxolyplatin less effective. So while it reduces the neuropathy, it also makes the treatment less powerful. Michael said that UCSF has completely stopped giving cal-mag with each treatment because the research results were so statistically significant. He seemed quite convinced that Dr G would not know of this research and offered to have a phone call with him. Of course, this made me panic. I was thinking "Oh my God, I need to be at UCSF!!!! Thank God I have Michael as my advisor!" But luckily, Dr G was ALL OVER IT! Not only did he know about the study, but apparently the Marin Cancer Center was part of the study. He said that he has also discontinued this part of the treatment for every patient undergoing FOLFOX and so I won't be getting this on Monday. The downside is that I'll likely have even more severe neuropathy, but at least the treatment will be able to do it's job properly.

4. In the end, Dr G said that he really, really wants me to do more doses of FOLFOX. He said that FOLFIRI is too "unproven" (Michael agreed) and that FOLFOX is my best bet. I'll do the EKG stress test first to make sure that my heart is still okay, but assuming that all is fine, he really, really wants for me to stay the course.

I think that I am slowly accepting the fact that I am just going to feel like total crap for the next 3 months and that I need to recalibrate my expectations. In fact, this is exactly what Michael told me on the phone. When I said to him, "Michael, this chemo just doesn't feel right. I feel really, really awful." His reply was, "Julie, I am not surprised. You are not supposed to feel normal. These are really powerful drugs." Oh.

So while the thought of having to "stay the course" for another 12 weeks makes me sooooooo sad (I think that part of me was hoping that Dr G would say, "Oh my! We need to get you off these drugs as quickly as possible!"), at least it helps that I am feeling a bit better this week. And so, if I can just stay focused on the fact that my body really will heal after all of this is over it will be easier for me to make it through each "hell week" (as my friend, Jan, has officially dubbed them.) It's just so damn hard in the moment because I really do feel like I have been poisoned and that I am going to die and it's such a scary feeling!!

In fact, I was thinking about it today and realizing that the fear that I have is just another example of the mind-body connection I have written about in the past....my body is literally being poisoned and so my mind panics because it can sense that things are not right. I told Pete that I would almost prefer to be completely knocked out for a few days so that I don't have to deal with the emotional stress and mind games on top of the physical pain, but I realize that that would be way too scary for the kids and so I just need to find some way to deal. I decided that I am going to schedule more guided imagery appointments -- I am hoping that they will help me to stay focused.

So that's the latest and greatest. Stress test is Monday at 9:45am and then, assuming all goes well, I walk across the street to have my third infusion of bitchy-spawn-killing drugs.