Enjoying the Holidays

After my really rough week I have had several really great days.  I was discharged Monday evening following my DLI infusion.  Even though it wasn't home, I was SO happy to be at the Hospitality House for the night and to take a HOT shower with water pressure....something the hospital apparently frowns upon.  At clinic on Tuesday I only needed platelets.  My hemoglobin actually went up.  I think the DLI definitely gave me some energy.  We were able to leave the clinic early and I got home before the school buses and was able to surprise the kids.

Since Tuesday I have been home every night but have "commuted" to clinic in Richmond every other day for platelets and blood (if needed).  My electrolyte levels have been pretty good which is nice because a run of potassium takes one hour to go in and the minimum number of runs is two...so the time can add up quickly!  Dad took me to clinic on Thursday and Brant took me today.  I like to spread the driving time around...lol.

Mom has had a much needed break from me although she hasn't relaxed too much.  Her Food Ministry with the church prepared 117 Christmas food baskets to distribute to families today and that doesn't include the 90+ seniors that she delivered food to at a housing complex on Thursday (a monthly routine).  Hopefully she will take a little rest now.  My sister Ruth has been splitting time helping Mom with her food madness and "babysitting" me and also helping with our kids.

So the holidays are here and although it is a pared down version this year (think one box of decorations instead of 10), we are having a really nice time.  I enjoyed decorating the Christmas tree more than usual this year as each ornament from our 20 years seemed to be extra special.  They are a pretty even mix of ones we have bought to commentate milestones and vacations alongside the ones we have received as gifts from friends and family.  We had a really nice dinner with two of our "beach families" the other night and for just a bit, life seemed pretty normal.  I have sneaked into a few stores (don't report me) thanks to Ruth and Brant, but have pretty much been taking it easy at home.

My pain level is almost zero and I have a decent appetite once again.  I get tired quickly and my low platelets show up with some annoying skin spots (petechia) and bleeding gums, but otherwise I am feeling very good.  I never really reported my November biopsy results because they were kind of inconclusive.  My bone marrow is very "empty" so there isn't much to analyze.  Things can be interpreted as good: the blasts in the marrow only went up slightly, and my chimerisms for blood and T-cells went back to 100% George (some of my material had sneaked in according to the October biopsy).  There are things that could be interpreted as bad: my blasts went up instead of down, my chimerism for bone marrow ticked up slightly from 4.5% me to 7.5% me.  With so little material in the marrow sample, the doctor said it really wasn't enough to hang your hat on one way or the other, but you can always choose to focus on the positives.  The Vidaza treatment is a slow one and it really takes a several months to see if it is working.  At least it does appear to be holding the leukemia at bay for now.  Brant and I will be going to both Duke and Johns Hopkins in January to get consults with Leukemia specialists.  My doctors and the staff at VCU have been great about helping us line this up and getting my information sent to each center.  We look forward to hearing their assessments of my situation.

Sorry to wrap things up with medical stuff, but I knew some of you must be wondering where I was at with things.  For now I am trying to take a mental break from it all and enjoy the holidays.  It has been easier to be positive lately with so few aches/pains and being at HOME with the family.  If I don't get a chance to write again before the 25th, I hope everyone has a very Merry Christmas.  We will be taking time to remember and be thankful for the gift of Christ's birth.