Kathy, Thank you for your peaceful reply (I teared up) =- and the suggestion to check with palliative care sooner rather than later. There is a wonderful hospice site just 9 miles from my home, and I’d planned to wait for the angels to pick me up there. 🙂 Read your profile and messages; really admire what you’ve done to deal with the disease. I know I could not do what you’ve already done. So you’re a nurse! Good for you. I’m discouraged because my male hematologist for the 17+ years with Ess. Thrombo would tell me NOTHING other than that “all was good” by staying on the hydroxy urea. After he ordered a BMB but gave me no info, other than my marrow was developing scar tissue, I dropped him and picked a female hematologist that a friend w/cancer at church really likes. But it’s been 9 mo. and we have not been on the same page. I would show her charts and graphs I’d made to prove that my marrow was acting really wacky over past previous months, and she’d dismiss it, mostly saying my 2 strokes last summer were the cause of the bad blood numbers. I don’t feel she’s taking any time to really look at my MDS symptoms. (sniff) TY again for writing.
