Comments on: August 21, 2007 http://www.ConstanceOre.com/2007/08/21/august-21-2007/ Reflections on Living at the End of Life - MDS and Leukemia Sat, 09 Oct 2010 13:56:10 -0400 hourly 1 http://wordpress.org/?v=3.0.5 By: Sheila http://www.ConstanceOre.com/2007/08/21/august-21-2007/comment-page-1/#comment-26428 Sheila Fri, 24 Aug 2007 15:23:36 +0000 http://www.connieore.com/2007/08/21/august-21-2007/#comment-26428 Hi Connie, I stumbled across your website when I was looking up Vidaza treatments. I also have been diagnosed with MDS. I had one bone marrow biopsey that determined my illness. Then I was given the pill "revelimid". With in days of starting that drug I had a terrible rash all over my body. That was discontinued. I chose to go to University of Michigan and have decided to go with one of their studies. I had to be off the "revelimid" for one month first. On Sept. 5 I will have another bone marrow biopsey done and then start vidaza treatments on Sept. 5. I feel so lucky to have come across your website. I have been trying to read everything I can find out about this disease and the treatments. I fall into the category of "don't know why I have this disease". I chose NOT to have the Bone Marrow Transplant. It wasn't for me. I do not know anyone else who has had this disease until you. Once again I am so happy to have stumbled over your website. You are giving me lots of insight of my furture days. I don't have the spunk that you do, sorry to say. I feel in the dumps all the time. My husband and I have been married almost 44 years. He has always been my knight in shinging armor. I must say I wish he could help me through my days ahead. He will try, but it will be hard for both of us. We have a son and his family who live in Alaska and our daughter and her family are only about an hour away. I have lost both of my sibilings to cancer. I also had breast cancer myself almost 22 years ago. However, I never had any type of chemo, so how I got MDS is surely a mystery. Any correspondence from you would be appreciated. But whatever, I will continue to read your updates. Thanks for listening to my problems, when you have as many of your own. Sheila Hi Connie, I stumbled across your website when I was looking up Vidaza treatments. I also have been diagnosed with MDS. I had one bone marrow biopsey that determined my illness. Then I was given the pill “revelimid”. With in days of starting that drug I had a terrible rash all over my body. That was discontinued. I chose to go to University of Michigan and have decided to go with one of their studies. I had to be off the “revelimid” for one month first. On Sept. 5 I will have another bone marrow biopsey done and then start vidaza treatments on Sept. 5. I feel so lucky to have come across your website. I have been trying to read everything I can find out about this disease and the treatments. I fall into the category of “don’t know why I have this disease”. I chose NOT to have the Bone Marrow Transplant. It wasn’t for me. I do not know anyone else who has had this disease until you. Once again I am so happy to have stumbled over your website. You are giving me lots of insight of my furture days. I don’t have the spunk that you do, sorry to say. I feel in the dumps all the time. My husband and I have been married almost 44 years. He has always been my knight in shinging armor. I must say I wish he could help me through my days ahead. He will try, but it will be hard for both of us. We have a son and his family who live in Alaska and our daughter and her family are only about an hour away. I have lost both of my sibilings to cancer. I also had breast cancer myself almost 22 years ago. However, I never had any type of chemo, so how I got MDS is surely a mystery. Any correspondence from you would be appreciated. But whatever, I will continue to read your updates. Thanks for listening to my problems, when you have as many of your own. Sheila

]]> By: heidi ore http://www.ConstanceOre.com/2007/08/21/august-21-2007/comment-page-1/#comment-26341 heidi ore Thu, 23 Aug 2007 12:49:54 +0000 http://www.connieore.com/2007/08/21/august-21-2007/#comment-26341 Dearest Mom May your days be filled with beauty - I'd watch out for that Charles guy - he is wily in his ways! Heidi Dearest Mom

May your days be filled with beauty – I’d watch out for that Charles guy – he is wily in his ways!

Heidi

]]> By: Sharon Struve http://www.ConstanceOre.com/2007/08/21/august-21-2007/comment-page-1/#comment-26303 Sharon Struve Wed, 22 Aug 2007 22:46:18 +0000 http://www.connieore.com/2007/08/21/august-21-2007/#comment-26303 Hi Connie, You are so valiant to endure the treatments for your illness and be so interesting in your writing to update us on such a high level. You have such a gift of expression. I am truly envious... in a good way, though. I really admire your skill. Thank you for sharing it, even on your hard days. The wildflowers at Sanctuary are beautiful. Isn't our Creator awesome? God be with you every minute of everyday. Love, Sharon Struve Hi Connie,
You are so valiant to endure the treatments for your illness and be so interesting in your writing to update us on such a high level. You have such a gift of expression. I am truly envious… in a good way, though. I really admire your skill. Thank you for sharing it, even on your hard days.

The wildflowers at Sanctuary are beautiful. Isn’t our Creator awesome?

God be with you every minute of everyday. Love, Sharon Struve

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