Stein and Scans

My last infusion on Monday, 11/16/20 was a very non-traditional infusion day. 

I am on a 6-week protocol now. Did I mention that? So, now I go to the hospital half the number of times as before. This is great for avoiding covid and for having a little more freedom in my life. It is not good for building a relationship with my new team, or for, ya know, keeping an eye on things. My team made this decision very quickly and without much discussion of pros and cons. (I am a little annoyed, can you tell?)

I was supposed to have a PET-CT scan today. Someone did not do something correctly and it was still pending with insurance. I got that notice late on Friday and was told that I would be called on Monday morning to find out if anything was approved over the weekend. I got the call one minute before I needed to get in the car for the scan and it was cancelled. Ultimately, it got denied.

When I arrived today, I did the infusion first, which meant that I would, of course, wait. I found it hilariously optimistic that my oncology appointment was scheduled for just 40 minutes later. My IV was not even started by the time my appointment came and went. 

When I arrived super-late to my scheduled appointment, I waited in the exam room for over an hour to see my doctor. After a while, I just climbed up on the table, laid down, and rested my eyes. I had not slept most of the night because of the nerve shocks in my knee for most of the night that kept me awake.

I called my pain doctor about the nerve shocks (I had also sent him a message a few days ago, but the system does not really work) and I will be going up on one of the meds. In good news, I got off of the opioids which was a goal because it really messed with my stomach. It took a lot of time because I kept having withdrawal symptoms, but was totally worth it.  

Seeing my doctor was actually fairly pleasant. It was just Kjersten and Dr. Stein--Kjersten has covered for Tiye in the past and we have a good relationship (no idea where Alicia was...). There were no post-docs, or trainee nurses, or whoever else just seemed to pop into my appointment (I swear there were like 9 people in the tiny exam room at one of my recent appointments!).

Dr. Stein was more pleasant today and took the time to be with me. He listened to my questions and we discussed having me do labs and coming in every three weeks regardless of the chemo schedule in order to keep a better eye on things.

At the appointment, he read the EMG results and said that Dr. Haggiagi really needs to be to one to interpret them, but that it seems to confirm what we know: there is a problem with L3, L4, and L5. He also said that he would follow up with Dr. Haggiagi. 

Dr. Stein also wants another MRI, and will continue to fight for the PET. 

After the appointment, I got calls from Dr. Haggiagi who ALSO wants me to have an MRI. 

I can look forward to spending half a day at a radiology center on December 1st. woohooo!