Disappointing Biopsy

After several days of feeling great and having lots of energy (prednisone) I was nervous about my biopsy appointment on Wednesday.  I woke up feeling not so good.  We had to leave earlier than usual for an 8:30 appointment.  I did manage to get in a donut on the way which made me feel a little better.  At clinic I had a low temperature of 99.7 which is probably why I felt kinda bad.  Amazingly my weight was about the same despite my new appetite.  They had to wait for my lab results before I could do my biopsy.  My platelets came up slightly from 22 to 31 which was good.  My WBCs fell a lot though, down from being over 2.0 to 0.6.  I have been tracking my counts and I had this kind of drop last month after Vidaza chemo, but still it was disappointing.  I had hoped maybe my bone marrow would be stronger and get thru things this month.

So the biopsy didn't go well.  Even though they have the best guy who does the procedures, he couldn't find any aspirate.  That is the liquid material in the spongy part of the bone.  He tried 5 spots...after giving me 50 mg of extra phentonol...so the pain wasn't too bad, but I was in tears from disappointment.  I knew that it meant I won't get any results about blasts or whether they see leukemia.....so more weeks of unknown.  It also means my bone marrow is very empty again.

The doctor came to see me and was very sympathetic.  They have so much to try to balance - fighting leukemia with chemo, backing down the graft vs host with prednisone, and trying to build up my bone marrow.  Of course,  treatments for one of these usually means making the other two worse.  They have decided to focus on building up my bone marrow for now.  So I will start photo-pheresis next week to control the graft vs host.  This will allow them to take me off the prednisone and immunosuppressant drugs which are suppressing my bone marrow and limiting the ability of my new immune system to attack leukemia.  They are also switching me to a maintenance level of chemo (still Vidaza).  It will only be half the intensity and for 5 days instead of 7.  It will be less effective at killing leukemia, but it will not hit my marrow so hard.  They are delaying my next treatment a week to give my marrow some extra time to build back up.  They would like to give me more of George's cells, but because of the liver response last time, they are going to wait and see how the other things work.  I don't know too much about photo-pheresis yet.  It is for two days a month for a year.  I sit in a chair for about 4-5 hours each day while they pull my blood out of the port, run it through a special light that kills specific t-cells that cause GVH, and then put it back into the port.  It will be in the same place where George did his stem cell collection.  I go next Wednesday and Thursday for my first treatment.  It is a fairly new treatment method and I think I will actually be part of a clinical trial.

So it was a very long and emotional day.  I also needed a blood transfusion and I just had one 9 days earlier.  But on the way home we hit Steak and Shake, and a good milkshake seemed to make things a little better.  Plus mom, who was upset herself, is always such a good encourager. I think I am pretty well over the disappointment now.  My energy was right back on Thursday and I have been insanely busy again for the last several days. There has been much work done around the house.  I enjoyed a night with some girlfriends at home on Friday.  We went down to the beach today and walked on the boardwalk.  It was chilly but a beautiful day and way to get my walking done!

My family got me a new exercise bike/elliptical as a one year gift so I can do my cardio at home.  No one seems too excited about me going to the gym, especially with my counts low again.  Brant and I talked today and he encouraged me to back it down a few notches.  The prednisone has me feeling like I am normal (or a little super human) and I am doing and eating normal things, but I really shouldn't be pushing the limits so much.  So I am going to try to get back into a more cautious mode again even though I want to do like 10,000 different projects.  It is exhausting for him to just listen to me.....ha!  I wonder what my energy will be like when I come back off the prednisone....?

It is late and I should get off to bed.  Thanks for keeping me in your thoughts and prayers.