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  • Writer's pictureBurt Rosen

Updates from 2/11




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!


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