The Beginning

For all who want to read and follow this not so very nice Journey, I have decided to do this blog.   From the very beginning I have described this Disease as having the feeling like I am in water, with No Land in sight.  The water is up to my chin and I am in panic mode because most of the time I am fighting the water.  Never, since the diagnosis, have I felt safe and secure.  Sometimes the water is up to my chin, and other times it's up between my mouth and nose, and always I am fighting for control, feeling out of control.
I have my entire life wanted control of every situation and have worked very hard at making everything be very much under my control.  I think that this started way back when my Mom was sick (and believe me when I tell you, my family life was OUT OF CONTROL), and I felt that If I could control the situation before it hurt me, then every situation and person around me would be fine. Can't answer for all my siblings but think they have probably operated in "Control the Situation Mode" all of their lives also.  It was is a survival trait.   So I set out, at a very young age to get CONTROL of everything, and some of you know that I have operated my entire life since making positively SURE that I would cover every situation.  I am still fighting for control of this, but I feel like I am getting very tired of treading water 24/7, never a day or moment off.   I will fight with everything in me for control of this thing, however, it will take the mountain of prayers, family and friends that I have to help.  I am not used to asking for help, and maybe it means I am giving up some control of this thing, but I have learned in the last two weeks that I cannot fight this one alone, and I have lots of help.  I have had a weight lifted off me recently by giving up some control of the money disaster, work worries, and giving decision making of so many things over to more qualified people.  My mind was in overload and it had ceased to function in just try and get well mode.
So that all out of the way, a little history, in July last year went to new Hematologist associated with Jasper Hospital, had been kind of tired, but was getting some age on me and working like a 20 year old, and noticed a lot of bruises.  He took blood, called me back week or so later and told me I needed to have Iron Infusions, (something I had had to have in the past) Anemia.  5 Iron infusions and another Breast Cancer Scare and many more visits and tests later, was called in early Nov. and told I needed to see Oncological Hematologist in Indy.  Diagnosis MDS, not good but manageable with watch and wait.  Dec. started getting very sickly, more tired, continuously catching colds/flu thing, blood tests worse, and more bruises.  Dr. in Indy was still taking the wait and watch mode while my blood work was taking a nose dive.  Late Dec. decided to consult with MDS Specialist in St. Louis, Barnes Jewish Hospital.  This Dr. did Bone Marrow Biopsy and $16,000 dollars of tests in one day at Barnes.  Re-visit January, not good news, was worst form of MDS and ready to go into Leukemia, I was going to need a Bone Marrow Transplant down the road to survive.  Ordered testing of my 3 brothers and 3 sisters for best of all Matches a Sibling.  February news, NO Sibling Matches, this was absolutely devastating news to all of us.  All Siblings stepped up to the plate, willing and ready to donate Bone Marrow, and not one match.  Back to Dr. in St. Louis late February, blood work getting worse so he was setting up plan to find Bone Marrow Unrelated Match, ( a process that takes 2 to 4 months.).  Next visit in March, plan of action to try Chemo that I would go to Barnes 5 days of each month, Out-Patient, and get this under control before planning of Bone Marrow Transplant down to the road.  He preformed my 4th Bone Marrow Biopsy and scheduled 1 week a month Treatments to begin 4/4/11.  April 1, called and told that this had progress into full blown Leukemia and must come on Monday 4th to decide new plan of action.
So, this gets to Monday this week 4/4/11 and most of you know the story from there.  I was admitted, told I will be here at minimum of 4 weeks and possible right through to Transplant.  Donor Search has been expedited cause I need a Match yesterday.  Yesterday was tests and lots of planning for the correct  Chemo combinations and today the Big Blast, kill out the bad guys began.  Today was busy as they took blood every 15 min. first hour, every hour next 2 hours, then a total of 8 more at intervals so often I lost track of just when they took them.  Sounds silly to me that if you need blood so badly why do they take so much, they have assured Miss Hard To Let Go Control here that they know exactly what they are doing.   I am getting a combination of 4 Chemo Drugs for 7 days and then I will be at "0" immune system.  I will have to stay until my counts get back in the safe zone, not good but safe to survive outside of this controlled world.  If we don't get to safe zone, I stay here.  That is where it may go from this to Transplant.  Plan is to have me get into remission, build immune system, maybe release for 4 - 6 additional weeks and back for transplant.  All so dependent upon The Donor and when/if one can be located.
So this covers July to present day.  Plan of action is set in place, just needs to work, and if it does I get to live many more years.  Sounds pretty reasonable, don't you think, and added bonus, I learned to give up my little world of CONTROL.
Goal is to place my feet firmly on solid ground, looking out at the ever distant waters, and Love EVERY minute with my Dear, Dear Family and Friends.