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Thank you for your comments. I have put in a call to my Hematologist for an extra appointment to discuss (scheduled monthly CBCD but appointment each 3/12)
I have to admit to feeling frightened of travelling far but have tonight committed to a 4 day trip in May to Arizona to see my stepdaughter graduate university with a car trip to Grand Canyon. I'm nervous, but will heed all your words of wisdom.
As for Madeira - although it is an island with about 2500 people, there is a teaching hospital, my next door neighbours are a GP and Orthopedic Surgeon and they are friends with one of the two Hematologists on the island. Also, in Lisbon, 1.5 hours by plane, I have an MD friend who studied hematology for 3 years before switching to public health medicine (she wanted a family and felt that hematology would be a 24/7 job, much as it fascinated her.) I should feel safe with this circle around me, but still feel really worried about possibilities. What, I wonder, could happen? My husband says to think positive things and only good things will happen. I want to, but it hasn't worked thus far.
No insurance will cover me for anything related to MDS - and who knows what could be related to it anyway - lots of wiggle room there for the insurance company.
I will now wait to see what the Hematologist says ...
Thanks again, B
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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