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  • Writer's pictureBurt Rosen

5/28 Updates


Ok, before I do anything, SHOUT OUT TO THE ORIGINAL BURTNESS BOOSTER, my amazing mother-in-law, Carolyn Moore. She had hip replacement surgery this week and aced it and is doing great! Quick factoid about Carolyn, she is an avid fan and devoted reader of the blog and the only, as of yet, commenter to earn the coveted Burtness Booster badge.


My updates seem to be getting less frequent and less contentful (I think that might be an incorrect assumption, you can tell me if you read all of this). Why is that? Maybe because I am boring in the world of treatment! Here's the update:


  • Pretty light symptoms.

    • A fair amount of fatigue and sometimes, with the fatigue, comes a little moodiness. There are times that I don't feel like talking or engaging. I allow myself that space when I need it.

    • My skin has been improving and I have only had periodic flare-ups of skin symptoms. I've been doing phototherapy (which I refer to as my tanning booth) 2-3 times a week and that plus topical treatments (when needed) seem to be helping and keeping things under control.

    • My sleep comes in and out. For a couple of weeks, I wasn't sleeping that well, but now it's better. Now my pattern is to go to sleep around 11:30, wake up around 5:45 am, be up for 1.5 hours then fall back asleep for up to an hour.

    • For the most part, my GI symptoms are doing well

  • I consider myself about 85% recovered from lung surgery. There is not much that I can't do right now. I probably do things I shouldn't but no problems when I do.

  • My current treatment for my cancer (just the PNET, nothing currently for the kidney) is my monthly shot. I've had 3 so far. I've asked for another CT Scan so we can see what effect the shots are having before we muck everything up with surgery.

    • I am still on Protonix for ulcers, Eliquis (blood thinner) for clots and Lactulose (world's most disgusting medicine (still, 10 months later)) for liver function

    • For supplements, I am taking 3 multivitamins a day for Men 45+, Vitamin C and Methyl Folate

  • My eyes have been deemed fine so no more retina specialist appointments. It's nice to be able to check something off my list!

  • Still doing acupuncture, therapy, walking when I can, meditating, eating well, etc. I need to get back into yoga.

  • Upcoming:

    • CT Scans for pelvis, abdomen, and chest (my normal set) on 6/2. Scans are always fun but hopefully not full of surprises (unless they are good)

    • A follow-up appointment with Dr. Pegna on 6/5 to review scan results

    • Surgery is on 6/9 so I stop blood thinners on Saturday 6/3 and start getting ready with meds etc.

    • Eddie and Romy coming home tonight for the month of June to visit us and help out.

    • Lisa (sister extraordinaire) comes out on June 8

    • Teri, the world's greatest friend, comes down from Seattle on June 7

That's it for now! I will try to do one more update before surgery after I get my CT Scan results. Thanks for reading!

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