Follow Up Appointment
Thursday we saw my gyn-onc for a quarterly follow up. This was a make-up after last week’s blizzard. He was clearly busy. He said, “Your CA-125 is 8!” with much excitement.
I told him I was feeling well except for this bladder infection. Described it a bit. He said yes it’s common. Didn’t seem concerned. We pressed it a bit more and he offered to refer me to a gynecological urologist. I didn’t know that was a thing! So I’ll do that soonish. I am feeling much better, but not completely normal yet, and Thursday was the last day of antibiotics. Maybe by the time I see said urologist I’ll feel fine and it will be educational and about prevention. If not, then I’ll have that additional resource.
In any case he seemed completely unconcerned about recurrence, acknowledged my “bronze medal” status, said the CA-125 is the marker to watch for recurrence, and said to make another appointment for June. He also said he thinks I’ll get my gold medal, that is, stay in remission and make it to 18 months post-NED.
Grant is feeling like he’d like some more reassurance, that we should remain watchful, not take remission for granted, and continue paying attention. He has read an article somewhere, which I can’t currently find, about how reliable the CA-125 is in detecting recurrence, and it allowed that sometimes it misses it. Therefore if these symptoms don’t clear up he would be concerned. We will be glad to have additional sets of eyes on the proverbial ball in the form of said gyn-urologists. If I don’t get back to normal even after this round of treatment for a bladder infection, then they will be good resources with whom to discuss it further.
I figure I’ll know more soon. As I said, Thursday was the last day of antibiotics. I was feeling better generally, and there was some residual discomfort still. Even today somewhat. Maybe I’m still just healing up. We did ask Dr. G if this particular strain, being known for creating abscesses, would be relevant to a bladder infection, and he said, no, that would be not at all likely for it to create abscesses inside the bladder. So there is that. I was in touch with my primary care nurse practitioner today about the fact that I’m not quite all better so she has reordered testing to see where we’re at. Should know soon.
Another thing Grant found online is that 60% of women diagnosed with ovarian cancer don’t survive the first year. So I’ve beat that statistic. However, I can’t find said article to corroborate that.
So, basically, the gyn-onc is happy with my progress, unconcerned about recurrence, and hopeful for my future. The bladder infection is still in process of being cured but progress seems to be being made.
Volunteer Piano Playing
On another note, I again played the piano as a volunteer at the hospital Thursday before and after my appointment. It’s a lovely experience. Grant enjoys listening.
Nearly every time I play, someone comes up to talk to me about how it is meaningful to them. The awkwardness of that is that they usually want to talk right in the middle of a song. I need to figure out my plan of action for next time about how to handle that best. Continue playing while nodding? Vamp a little bit while chatting? Stop completely and have a real conversation? I don’t seem to be able to really talk and play at the same time.
The song that got the reaction Thursday was Nature Boy, and the gentleman told me how he loved it, and how his mother used to sing it, and how she was an opera singer who travelled in Europe. I suppose I should really just stop, and chat. I would like to know more. *And* I feel some obligation to the rest of the room who are listening to the music too. Hmm. Feedback?
So there it is. The stress and strain of worrying about recurrence were unfounded, apparently. What a relief. And, it was illuminating to see how much cancer-related PTSD we both must have. Instant trigger. That is a place for continued work. I have an appointment set with my counselor for Monday to maybe do some EMDR. Good stuff.