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  • Writer's pictureBurt Rosen

8/27 Updates


Long time no post. Largely, because not a lot of interesting stuff is going on.

  • I am still doing pretty well overall

  • This past week I've had a lot more fatigue and a little bit of brain fog

    • While you never know why symptoms occur, I have a couple of theories

      • I was reducing the dosage of a drug called Lactulose and trying to wean myself off of it. Lactulose is a drug I've been on for a year. It helped my liver function better and helped resolve the ammonia issues in my brain which caused severe brain fog a year ago. Since I had liver surgery and my liver function #s were good, my Oncologist and I agreed that I could try to take myself off of it.

      • I went on a big hike last week (part of my ICDI Program (I Can Do It) and I might have overdone it a bit which could result in my symptoms getting worse

      • I reintroduced a small amount of dairy into my diet. It's hard to say this caused anything but could be one of many factors. It also might not be but it's something that I've changed recently.

      • Could just be the cancer acting up. Symptoms can flare

    • Luckily, today (8/27) I am feeling much better and more normal (or better Burtness). It wasn't horrible but definitely had a small impact on me so I am happy that I am now improving.

  • So my current symptoms are mostly fatigue, some issues with my skin, minor brain fog, sleep, and some energy (but getting better)

  • Right now, my treatment is just my shot of Octreotide that I am getting monthly. I am fighting with insurance to get a better drug but it hasn't happened yet (Lanreotide). There are things about my Insurance (Regence Blue Cross Blue Shield) that I love (their customer service is great) and things that I don't (like denying medications my oncologist recommends).

  • I get a shot on 9/1 and we will see what med it is. Hopefully, my insurance and medication issues will be cleared up by then.

  • My next CT Scan is on 9/25. That's a big one. My surgeon thinks I need to have the pancreas and spleen surgery soon but I don't want it now. I am hoping the scan shows me shrinking (not likely) or stable in which case I buy myself more time. If I am spreading or growing I will have to consider the surgery.

  • In the meantime, I am focused on more fun stuff. Outside of the fatigue and minor brain fog, I am spending time on my ICDI program. I've gone to the gym a few times, went to the beach for a day by myself, hiked, and am planning more hiking.

  • My big event, if my health agrees, is a drive to Banff to a conference (Society for Integrative Oncology) via Glacier National Park (for 4 days). I am very excited and plan my trip every day. The time by myself in incredible places will be a huge help to my mental health. I am also being realistic. I hope I can go, and if I do, I will certainly not push myself too hard or too far. I am learning to be a lot smarter.

That's it for the update! Any questions at all let me know. I am working on some other blog posts too that I will hopefully post soon. Thanks for reading!

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3 Comments


ojaifarm
Aug 29, 2023

Your trip to Banff and the conference sound exciting! May everything line up for you so that it happens! It's great you're even considering hikes and going to the gym. Your ICDI program is paying off! Thanks for this Burtness update!

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Kevin Soravilla
Kevin Soravilla
Aug 28, 2023

You sound good and optimistic. Hang in there my friend.

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Burt Rosen
Burt Rosen
Aug 28, 2023
Replying to

Thanks Kevin, we got this!

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