I had my every two week appointment with my oncologist yesterday. I was on my own, something that doesn’t happen too often. There were two things on my agenda - the increased hip pain and the steroid side effects I’m experiencing.
He wanted to go over treatment options and make sure we weren’t missing anything. As for the hip pain, I’ve pretty much decided to leave it be. As long as I use my cane for any distance and stay off it as much as possible the pain is controllable with just a slight increase in my usual rescue oxycodone. No reason to clutter my life right now with scans and appointments to thinkabout the possibility of additional radiation unless it gets to the point where symptom control with pain meds stops me from doing things I want to and could otherwise be doing.
Next, we went through emails, path reports and consults to make sure my tumor had been tested for every single mutation that might qualify me for an active phase II or III trial for my cancer. It has. Not eligible. Phase I is all that’s available. I haven’t ruled that out, but I’m not inclined to put a whole lot of energy into either looking for phase I trials or, especially, committing a lot of time to participating - either for travel or treatment.
Finally, I clarified with him what the steroids are currently treating and we talked about the side effects I’m experiencing - proximal weakness (difficulty getting up out of a chair), weight gain and moon facies. I’m going to very gradually try decreasing the dose to see if I can find a dose that will control the nausea (it also helps with the bone pain) but lightens up on the side effects a little. That’s a 25% reduction per week, so I’ll let you know how that goes.
So I went to the back for my Gemzar. My chemo nurse hooked me all up and after a while sat down for a chat. It was really quiet yesterday afternoon, unusual for a Tuesday, and I was her only patient. She was taking the opportunity to talk to me about what I’m thinking and feeling these days while I was alone. She said she almost never gets to do that because so much of the time families are in denial about their loved one’s terminal cancer up to the very end. I explained to her that she really doesn’t have to wait to ask me these questions while I’m alone because I won’t let myself or my family be in denial. Granted, my family’s had more than a little experience with terminal illness - my mother’s been a hospice nurse and my sister lost her husband to leukemia - but even if that were not the case I would feel that it was my responsibility to be a truthteller for them. I have incurable, terminal cancer. It is progressing. It will take my life in the foreseeable future. So, meanwhile, let’s have some fun. Let’s enjoy each other, eat well and laugh.