Sorry I've been off the radar for awhile, but my health has worsened. One of the really bad things about having 2 forms of incurable cancer is that my symptoms only seem to get worse, and almost never get better.
My latest issue has been anemia. While I've been battling this since I was diagnosed with MDS last summer, it continues to worsen. I was hospitalized three times over the course of 2 weeks, both in Chapel Hill and at home and I have needed red blood and platelet transfusions about every 10 days to 2 weeks. In between the transfusions, I have ZERO energy. Those who know me well know that I love being active. My activity level has dwindled to where going up the stairs in our house is to be avoided because, even shortly after a transfusion, it leaves me lightheaded, dizzy and weak. By the time my hemoglobin is worthy of a transfusion, 8 or lower, I can barely get myself off the bed. A month ago I was trying to do 20 or 30 minute easy yoga or pilates DVDs but I can't even handle that now. Last night, Hadley and I walked the dog about a mile and it resulted in severe shoulder pain. A few days before, our entire family walked the dog the same route and it left me with a stabbing pain in my upper right abdominal area (yes, I have liver mets too). So, exercise is a no go these days and that makes me sad :(
Anyhoo, Geoff and I are going to try and get the family away for a one week stay somewhere in the Caribbean. We want to pull out all the stops, stay somewhere we can almost sleep on the beach but still be waited on hand and foot. We want the family to take one last vacation while I still can -- not to be morose but we're scared that by the end of April I may not have the energy to go anywhere.
The difference in my energy level and overall condition has dramatically worsened since our Paris trip. These weeks have been very difficult for our family. Geoff is exhausted from driving both girls to different gymnastics meets all over the east coast every weekend (by himself). He works all week and then does the bulk of the child care every evening and weekend. The girls are sad because they are watching their mama worsen and spend all day and night in bed, missing their gymnastics meets and everything else. (BTW, my husband rocks, he is my soulmate, and I cannot express how much I love him and how impressed I am by his ability to rise to the occasion!)
As for me, I feel strange when I leave the house. It is very difficult to do so and I do not go anywhere very often as a result. But of course, that is not an exciting life either.
Thus, Geoff and I want to build some happy memories for the spring of 2012. We want to go somewhere warm, luxurious but that is not $30,000 (eek!). I am thinking Jamaica (Half Moon Bay Resort), Andros Island in the Bahamas, St. Martin (rent a villa on the beach this time), Anguilla, or maybe Barbados. I'll get a travel agent this time ;)
Thanks to all who have provided food and rides! We could not make it without you! I hope to have more smiling beach photos to post soon.
Health and happiness to all and God Bless!
Sofie
Wednesday, February 29, 2012
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