Just got off the phone with Emily, the NP In my surgeon's office. They got the report back from the scans. So, my hernia is pretty effing complicated - apparently ileum, cecum, and appendix are all not where they are supposed to be. According to wikipedia those things are all neighbors. According to Emily, that's a lot of stuff all at once.
Also, turns out they are glad they accidentally took the chest CT because they saw some stuff there too. Yay. The node they tried to biopsy two years ago (that would be the one where I hallucinated I was being eaten by a cylon) is apparently still there, and now it has a friend in my left lung. The old one is 7mm, and the new one is 3mm. I'm not concerned about it - the only thing we knew for sure about the old one is that it isn't cancer. I had no tumor markers in my bloodwork a couple weeks ago when I checked in with the oncologist, and shit happens in your lungs as you get older.
So, next steps for me - get on the phone with Stanford and order up copies of everything to be sent to UCSF. Realistically, that means hand delivering everything.
Next steps for them - surgeon is supposed to consult with GI surgeons on a surgical plan to put all my bits back where they're supposed to be. I asked about wait times for an OR and mentioned that the last couple of times it took 4-5 weeks to get me in. She laughed and said no, they're going to move somebody else to get me in sooner. MUCH sooner. I don't know if I'll have a date by this time tomorrow, but it sure would be nice.
Note - since people tend to assume I'm really upset by all of this - I'm really not upset by all of this. I'm happy and relieved to have answers and a way forward. I have anxiety about it - right now it's 90% about getting to a scheduled surgery date without having an emergency beforehand, and 10% about getting the IV on surgery day, whenever it happens. Surgery itself and recovery? Not concerned at all. Been there. Done that. I know the terrain and how to prepare myself. I'll be fine. I also started trying to meditate a week ago (unrelated to all of this) and I think it's helping me here too.
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I do think it's kind of funny that a couple months ago when this started I described it as "feeling like all my guts fell out." I was not intending to be accurate. Also, I think it's kind of funny how I've been relating to the TV show The Walking Dead. A long time ago there was a comment in the show about zombie smell, and I watched that episode while my chest was rotting off after the mastectomy, and yes, it really didn't smell good. And now, with all this the image that keeps popping into my head is the end of Nicholas a couple weeks ago.
Also, turns out they are glad they accidentally took the chest CT because they saw some stuff there too. Yay. The node they tried to biopsy two years ago (that would be the one where I hallucinated I was being eaten by a cylon) is apparently still there, and now it has a friend in my left lung. The old one is 7mm, and the new one is 3mm. I'm not concerned about it - the only thing we knew for sure about the old one is that it isn't cancer. I had no tumor markers in my bloodwork a couple weeks ago when I checked in with the oncologist, and shit happens in your lungs as you get older.
So, next steps for me - get on the phone with Stanford and order up copies of everything to be sent to UCSF. Realistically, that means hand delivering everything.
Next steps for them - surgeon is supposed to consult with GI surgeons on a surgical plan to put all my bits back where they're supposed to be. I asked about wait times for an OR and mentioned that the last couple of times it took 4-5 weeks to get me in. She laughed and said no, they're going to move somebody else to get me in sooner. MUCH sooner. I don't know if I'll have a date by this time tomorrow, but it sure would be nice.
Note - since people tend to assume I'm really upset by all of this - I'm really not upset by all of this. I'm happy and relieved to have answers and a way forward. I have anxiety about it - right now it's 90% about getting to a scheduled surgery date without having an emergency beforehand, and 10% about getting the IV on surgery day, whenever it happens. Surgery itself and recovery? Not concerned at all. Been there. Done that. I know the terrain and how to prepare myself. I'll be fine. I also started trying to meditate a week ago (unrelated to all of this) and I think it's helping me here too.
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I do think it's kind of funny that a couple months ago when this started I described it as "feeling like all my guts fell out." I was not intending to be accurate. Also, I think it's kind of funny how I've been relating to the TV show The Walking Dead. A long time ago there was a comment in the show about zombie smell, and I watched that episode while my chest was rotting off after the mastectomy, and yes, it really didn't smell good. And now, with all this the image that keeps popping into my head is the end of Nicholas a couple weeks ago.
SOnya, u can buy lidocaine over the counter to help with IV incisional pain. U will still feel the stick but not as much. BEST to u. ~Shirley Cha
ReplyDeleteThanks Shirley, I do have some. I was thinking I'd try wearing a latex glove without powder with the lidocaine in it on the way to surgery to get the right coverage on my hand if they have to go there. If they have to do my foot I'm going to ask for a lidocaine injection before they start digging around in there.
DeleteArgh. I'm sure ur looking forward to getting it done. Enjoy your Thanksgiving meanwhile. Take care.
ReplyDelete