Updates from the last week or so:
I've been feeling really good lately, Burtness is high!
I am on my two-week off chemo phase before I start cycle #8 on the 16th. I am planning to travel around weeks that I am not doing chemo
We had an amazing driving trip to Southern California (home now) to see Eddie, Romy, and my in-laws, Ted, Carolyn, and Tim
The first two days were a little tough, I was up and down a bunch
I tended to be great in the morning and would drive a decent amount (maybe up to 3 hours - before the trip I hadn't driven more than 45 minutes in almost a year)
Then I would take a nap. Post nap, I would be cranky, not very nice, short with Krista, and just not fun to be around. That happened for two days and then I leveled out and got much better. Even the drive home went very well.
My symptoms are pretty consistent. I still have fatigue, and GI stuff, and my skin has been pretty bad lately. I won't go into details unless anyone wants them
My next CT Scan is on March 24th
This is a big week for me coming up:
Dr. Pegna (Medical Oncologist) and blood draw on Monday for check-in and discussions around testing a new PPI so he can test my gastrin levels more accurately (we suspect that my PNET Tumor type is a Gastrinoma (there are 4 types of PNETs) but because I am on ulcer meds we can't confirm it yet. We are going to do a test with switching medication to figure it out
Dermatologist appointment is on Wednesday to help with the skin symptoms. I understand what's causing them but sometimes you just need to address the symptom, you know?
Retina Specialist check-in on Thursday. I do these monthly for 6 months since I have a Retinal Vein Occlusion for her to check and make sure its looking good. If it continues to look good, there are no treatments for me. Yay!
My mental state is great and my Burtness is super high. I am on the Patient Advocacy Committee for the Society for Integrative Oncology, I am on the Advisory Council for the Neuroendocrine Cancer Awareness Network, I am doing calls with OHSU marketing and patient experience teams, and still working on a part-time job. As my brain goes I go!
Next week will be a hell of an update! I also have a few other posts in the works!