Where to start? I guess where I left off is as good as anywhere. Last Wednesday afternoon I started feeling very punk again. No fever, just exhausted and nauseated. It was too much effort to sit at the computer and post or even pick up my quilt. Friday I went to the doctor for counts (fine) and Zometa late in the morning. By 6 pm my fever was once again 102.1 and I was back to just flat out awful. Being the holiday weekend (and my oncologist was out Friday and won't be back in the office until next Monday) I decided to wait and see how I felt Saturday morning before deciding what to do next. Saturday morning my temp was 100.3 and I still felt awful so I called my Albuquerque oncologist friend. He suggested that I take some dexamethasone I have lying around from radiation therapy days. I did and was feeling much better within 3 hours, which I really didn't think steroids could do, but yay!
So I made our lamb cake for Easter dinner and dyed eggs with Hannah and Philip. Sunday morning we had our egg hunt and Hannah and Philip had eggs and candy for breakfast and lunch. I made rack of lamb for dinner and that was delightful. I called Aof on Sunday morning to let him know how much better I was feeling and we agreed that I wouldn't take any more scheduled dexamethasone - just see how I feel and act accordingly. So, of course, I woke up feeling stinky on Monday and took some before Hannah and I headed North for a college visit. That went well and I came home and went to bed. Yesterday I worked before my scan, had the scan and went home.
The scan. Not good, to put it in as few words as possible. Of course, it's never that simple. The #@(%&&*# who read it apparently can't commit himself to a darned thing because the very short body of the report is full of mays and perhaps and such nonsense but the conclusion is clear and one with which, after looking at the scan, I agree completely. Worsening bony disease. Worsening adrenal disease. He thought the big lesion in the liver might be a little better. It's not. He just measured differently than the last doctor. My two favorite radiologists, like my oncologist, are not available because it's April school break week in CT so EVERYONE is off somewhere with their kids.
My oncologist will read the report and say that he considers it to be a "mixed bag" and not clear enough to discontinue treatment. I understand his position - this is really pretty much the end of the line for me unless I have a rare mutation that qualifies me for a clinical study so it's a decision between treatment and no treatment, not one treatment and another. But it's really nasty treatment that leaves me with no real quality of life and it's just not worth it unless it is demonstrably controlling disease, which it is not. So we will argue on Tuesday.
The Dana-Farber radiologists will look at the scans and weigh in on their own, but probably not by Tuesday. I'll drop a disk off at my oncologist's office so he can let the Yale boys take a look, but I'm guessing that will be a limbo opinion because that's what he wants to hear. When one of my trusted radiologists is back I will go over the scan with him/her to make sure that at least WE are in agreement that the scan shows progressive disease.
Bah! At least the Zometa is helping with the already not too bad bone pain I was having. Really, in medical school they taught us that bony metastases were the worst pain we'd ever see to treat. That's how we learned to treat severe pain. I have metastases in my C4, C5, T11, T12, L1 and L4 vertebral bodies, my sacrum and two in my pelvis and pain is just not that big an issue for me. Hallelujah for that.
I won't know for sure until I've heard the Dana-Farber opinion and seen my oncologist face-to-face on Tuesday, but I think this is THAT moment, the point at which I say no more treatment, just make me feel as good as you possibly can for as long as I've got. As always, there's no predicting how long that might be and I don't want to speculate, just shorten my window to 6-8 weeks at a time.
As for how I am today, that would be nauseated, tired and full of uncertainty about the future.