Saturday, May 11, 2013

Mom...!, Kyle is making me itch again...!


Oh my goodness…where do I start?  My ANC this morning was 130!!  We are officially in the triple digits!  I want to shout it from the roof tops.  WOO HOO.  Just gotta keep chuggin along…baby steps.  I also had my first real meal this afternoon.  I had oatmeal and yogurt for breakfast, totally forgot about lunch, and ordered pasta for dinner.  It was terrible but I managed to eat a small portion of it.  First real food in recent memory! J  I still have very little appetite and feel full very quickly but at least my mouth is healing and it doesn’t hurt to eat today! J

Best news yet: (drumroll please)…. The doc used the “d” word for the first time yesterday!  He just casually slipped it in the conversation we were having and I felt like I was in a cartoon where you have all the sound effects and in my head I heard the sound of tires dragging on the street as a car comes screeching to a quick stop.  When he stopped talking he asked me if I had any questions and I said “yep, did I hear you say discharge sometime next week if all goes well?”.  He smiled coyly and said, “you caught that huh?” and then laughed.   Here on the unit, the nurses do 3 “discharge education sessions” and I got my first of 3 sessions with my nurse yesterday who has been working on the BMT unit for 18 years.  She was awesome to explain everything to me, answer all my questions, etc.  Part of the discharge education is how to clean my central line & flush the triple lines.  The entire time I’ve been here, the nurses had been doing it for me, but today, for the first time, I got to do the cleaning while my nurse watched me.  30 seconds (or 2 times singing the alphabet song) of “vigorous scrubbing” with a special q-tip thing that has antimicrobial stuff on it.  My nurse said I did an excellent job J  Rock on!  I have 2 more education sessions (going over the same stuff) and John will need to attend one of them so we are hoping we can do it this weekend when he comes to visit)!
 
Other good news is that we’ve been able to switch my immunosuppressant meds to oral (instead of IV) now that my mouth/throat are healing.  They also switched back all of my other meds (that I’d been getting via IV since my mouth hurt so bad) and they are all oral now as well.  I was able to take everything via pill today (except my magnesium & daily “banana bag” of fluids).  Nurse said she is pretty sure I’ll go home on IV meds & that a home health nurse will have to come to the house each day to help with this, but I’ll take that over being stuck in the hospital anyday!!)

With my ANC counts starting to slowly creep up I’m also starting to experience some GVHD symptoms as Ky’s cells are working hard to kick start the production of my new system.  I’ve got itchy/rashy spots on the back of my hands, my shoulders, my neck and my ears.  The doc said this is common & that GVHD on the skin usually shows up in areas that are more damaged by the sun (previous sunburn areas, etc).  He instructed me to use a special steroid cream on the little spots to see if we can keep them under control.  If not then he’ll “switch to the big guns” and we’ll do oral steroids (which I am hoping to avoid if at all possible because they wreak havoc on my body with raising my blood sugars super high and cause puffy/swelling of my face, but we’ll see).  Fingers crossed we can manage the GVHD with the steroid cream for now!
So, we’ll keep an eye on my counts and my GVHD symptoms and if all goes well then we have a very tentative discharge for the end of next week or early next weekend.  HOLY MOLY, there is finally a light at the end of the tunnel! J
-Chellie

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