Monday, February 25, 2013

A Journey Into Life?

I am usually trying hard to blog without getting personally involved.  I suppose you could call it hiding.  I have felt the need to step out for a long time.  Now I have been given a little push, and I hope I get better at it as I go along.

I have been ill, perhaps I should say feeling terrible for a long time.  Very exhausted, unable to get over anything I caught, bruising without any injury, and a general feeling of not being well. Then after a CBC was taken my blood count was
5.7  Needless to say I was admitted and given blood.  Many tests, including a bone marrow biopsy were done and the word was, "we don't know what it is, but it is some kind of cancer".

I was sent to a Dr. Cripe in Indy who is a Hematologist/Oncologist at the Simon Cancer Center.  How did I get so lucky to end up with the best?  He is wonderful and I am not the only one that thinks so.  His reviews are great.  Anyway, he did another bone marrow biopsy and diagnosed me a few days before Christmas.  It was High Risk MDS or High Risk Myelodysplastic Syndrome. (For anyone reading this that has the disease, my blasts were 14.  I would love to hear from you!) There are a lot of articles on what High Risk MDS is online so I won't bore you.  I'll talk more about it as I go along.

Last week I was in hospital with a cough and fever.  My platelets were 10 so I was transfused with platelets.  I spent my Sunday getting 2 units of blood.  I no longer make blood.  My body doesn't make mature cells anymore so I am alive only because of blood donors.  If you don't think donating blood saves lives I am here to tell you that you are wrong.  Sunday I had my 18th and 19th units.  If it were not for you I would not be alive now.  You have given me time to get treatment. I do appreciate all of you so much. Thank you.

I have just finished my 2nd cycle of the chemo meds, called Vidaza, and now have 3 weeks off to try to talk myself into eating, getting out of bed, and in general living.  We are lucky in our little town to have Schneck Cancer Center.  Otherwise
I would have to go daily to Indy for treatment.  I think we are also lucky to have such wonderful nurses there and my local Oncologist, Dr. Olivarez, is so wonderful.  

At the end of this journey I will have to have a bone marrow transplant.  I could find very little about that, so I asked my favorite nurse at the cancer center about it.  With my permission she talked to someone that had already gone through it and asked them to call me.  He called me today.  He was so nice.  I am still scared, but scared with knowledge, not that it means anything....:)  One of the things he said was that he didn't feel so alone and depressed when he started talking about his
journey.  So here I am.