But I feel ok….
Yeah I feel ok….but about a week ago I was told I have an incurable blood disease..
(Essential thrombocythemia (ET, also known as essential thrombocytosis) is a rare chronic blood disorder characterized by the overproduction of platelets by megakaryocytes in the bone marrow in the absence of an alternative cause. In some cases this disorder may be progressive, and rarely may evolve into acute myeloid leukemia or myelofibrosis. It is one of four myeloproliferative disorders…
I didn’t gasp…I haven’t gone why me…yet….I am trying not to go there…. I figured it would be good for me to blog about it…you know express my faults…might help me not get depressed about it all….I didn’t see or feel it coming, but unless the 2nd set of Dr’s and the oncology dept at Rex is wrong I have an incurable blood disease that will manifest itself and take my life. It is a genetic rare disease that makes your blood form too many platelets…the thing that clots your blood (now that is what I really call to much of a good thing) . The top off that good news the Dr told me it was incurable….I have has some bad days, real bad as a matter of fact, but that was a bad day. They good news is that I could ….key word being could….have 10 to 20 years of quality life left….that was actually the statement that shook me a little…putting a number on your life….didn’t really like hearing that. The other good news is…I am going to be 58…if I can make it 20 years….I will be 78…and hell…that ain’t bad…and the longer I can live the more chance they might find a way or something to fix this mess….not counting on that you see, but I am still getting my head around this and thinking a million different things….Lets be clear …I am not a good writer, and I am doing this for me for the most part, you know to write my thoughts down. So I apologize if my words don’t flow….I am too tired to write much more…I have to work tomorrow and it is 12:30…Until next time…good night….I am ok…and I hope you are…
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Hi Greg..
Thanks 4 sharing, mighty corageous of you to do so. I wish you the very best now and through as many days, years, or decades that may be. Life is so unpredictable it’s not even worth worrying about tomorrow. Keep enjoying your life like you do. And heck, remember you met Elvis and Michael!
Hang in there, my friend!
Greg, My first reaction to this is that it just sucks, but then you mention a possibility of 20 years more life to make the most of. As long as it isn’t painful or difficult to deal with until the last couple years, it sounds liveable. So, next question is, what can you do to maximize those years. I look at this myself because my Mom and her Dad both had congestive heart failure and died in their 70′s. You may have heard that the NC Biotechnology Research Campus is here in Kannapolis now. Today I learned that Martin Kohlmeier, MD, of the UNC Nutrition Research Institute is starting a study using a personalized online nutrition guidance program. You can even submit blood and have your genetics considered into it. I am going to do this. Why not? It can only help. If you are interested, the contact information is: Martin Kohlmeier, MD, UNC Nutrition Research Institute, email: mkohlmeier@unc.edu, 919-408-3320, Ext. 23 or 704-250-5023 (Lv Message). Website: http://www.nim.unc.edu/nutrition/guidance.html God Bless you Greg. Maybe God had me attend this luncheon with more than me in mind. I was going to skip it, but then said I’d better go even though I got there late, and I got the last paper on the study. Good luck, I hope they will help you. If you need an address here to get in the study, tell them you stay at 536 Gatsby Place, in Concord, NC 28027.
Greg- Now it’s my turn to lend support to you. We can start by that cup of coffee we talked about the other day. I do chemo tomorrow (tuesday) but am free Wed or thursday afternoon. Friday is always a down day for me. Call me or I’ll call you. Keep strong. Doug
Dear Greg,
Of course this is a shock and the only thing I can do is sending you our love; you know we are with you. Reading about the 20 years is good news but all that counts now is that you feel loved and you have your great family and friends to show you that you are.
XXXX Beppie and Milko