I'm having a lot of trouble with symptom management - in part because we aren't sure what symptoms are due to the cancer in my body, what are due to side effects of medications, and what are due to the brain tumors. This makes treating the symptoms somewhat difficult, because different meds use different pathways to treat various issues.
For instance, one sort of steroid works well for brain mets, because it treats cerebral swelling well, while another might do better for chemo-caused inflammation and symptoms. Unfortunately the steroid I am taking - which treats cerebral swelling - I recently found out decreases the effectiveness of the chemo treatment I am taking. Since we suspect that at least some of the very worst of the symptoms are caused by the chemo drugs, having to double the dosage in order to get the same effectiveness one would expect from the dosage that is already causing problems... well as you can imagine, it's not optimal.
Another steroid might not have that problem of lowering effectiveness, but would not treat any symptoms that might come from the tumors in my brain (perhaps most especially the one that could not be treated and thus not slowed down, whose low position near the brain stem makes brain swelling a major concern).
As you can imagine, this is causing concern and consternation to all concerned. I have an appt. with my palliative care specialist tomorrow, and she has consulted with the neurologist and my oncologist, so hopefully we will figure out some course of action... but she tells me that they may not be able to alleviate my symptoms to anyone's satisfaction, and it may all just be an exercise in trying to balance the horribleness in a way that I can sort of grit my teeth and bear it at least part of the time, rather than getting me to a place where I am functional or comfortable. In other words, I may get to choose which symptoms are most awful (do you want excruciating pain and manageable nausea, or manageable pain but lots of dizziness and vomiting?), but I don't get to choose not to feel awful.
In the meantime, my condition is putting us under a lot of pressure to make decisions about end-of-life care that are difficult to make with the relative dearth of information we have - we don't have a timeline that lets us know what and when my various needs will be, and this causes a lot of practical planning problems. I am under the pressure to get a lot of things done, but I'm not in a condition that lends itself to doing things that require either physical or mental exercise.
All of this is what takes up my time, most of which is spent in bed. Well, that and watching television, which is the only recreational activity I'm capable of at this point.
And that is why I haven't had a lot to say in the last week or two. I'll let you know if I catch a break for a while...