Photopheresis Fun

I had another nice week at home after returning last Wednesday from my biopsy.  They gave me the whole week off but I did go to the local oncologist on Monday to get my labs checked.  My white count creeped up from 0.6 to 0.8 and my platelets were rising from 32 up to 46.  Not very big increases, but at least we are headed in the right direction.

Mom and I headed out Wednesday morning - again early for an 8:30 appt and again with me feeling tired and not so energetic.  I think the prednisone gives me a false sense of energy and every few days my body says - "whoa! time to take it a little easy and rest."  It was Nurse Appreciation Week so we stopped at O'Doodle Doos to get two dozen (plus 1) donuts for the nurses.  I did not touch their stash for the 1-1/2 hour ride up.  Very impressive.

I headed over to the Apheresis clinic and got the same nurse that George had on his last day here in February.  I had to be consented by the Resident before beginning the procedure.  He explained the process a little bit more - take out a portion your blood, put it in a spinning machine to separate out the white cells, add some medicine that makes the blood sensitive to light, shine UV lasers thru the white cells, return blood to your system.  Repeat for 3-4 hours. I knew my white count was low, so I asked him how much this dropped your white count.  He wasn't sure...

So I got my labs drawn and they started me on the machine.  Fortunately the port I have installed on my left shoulder will work so no needle sticks in the arm.  The needle they use is VERY large and even with the port it was somewhat uncomfortable.  I felt very badly for George having TWO of these in his arms for two days.  I fell asleep pretty quickly only to be woke up in a hour when the nurse got my labs back and my white cell count was only 0.9.  Well, yeah, I could have told you it would be low. (My platelets were up again to 57 and my HgB was holding). Apparently you are supposed to have a white count of 2.0 or higher (preferred) or at least around 1.5.  This is both for safety and effectiveness.  Since they are treating the white cells, if there are none there, the treatment isn't really doing much.

So there was a flurry of activity and they paged one of the bone marrow doctors.  They went ahead and did the light treatment on what was in the chamber - it only took 10 minutes since there were so few cells.  Then they took me off the machine and cancelled me for Thursday.  Mom was highly annoyed since the whole mishap could have been avoided by several different people in the chain starting with my doctor last week and ending with my nurse that morning.  But it is not a perfect process for sure. 

I headed over to the bone marrow clinic and had a  quick visit with the doctor.  They will do the photopheresis when my counts come back up.  They seem to be a little sluggish this month and so the doctor took me off of the immunosuppressive drug and reduced my prednisone from 50mg to 40mg/day.  My liver numbers are all back in normal range, so hopefully they will stay there as the meds come down.  I am still scheduled to come back on Monday to start my lower dose of Vidaza chemo.  Oddly enough, my counts tend to be the highest the week of and one week after chemo, then they fall for 1-1/2 weeks before starting to climb back up.  They should get high enough to do photopheresis later in the month.

So we gathered our things from the Hospitality House (mom had already unloaded for our overnight) and headed back home.  I have been a little less energectic and had a lot of muscle and bone pain Wednesday night.  I have been exercising both doing the recumbent bike and some light strength training (at home since my counts are still low).  So I don't know if it is soreness from that, or maybe my bone marrow getting busy making cells because that tends to cause aches, too.  They will check me on Monday for graft vs host of the muscles which can happen as well.  It has been a little better and Tylenol works well to keep the discomfort down.

I am looking forward to the weekend even though it will be HOT.  I like heat and am so tired of being cold.  Happy early Mother's Day to all of you moms out there.  I hope you get spoiled rotten!!  I so remember last Mother's Day of being in the hospital.  My doctor came in for rounds and casually mentioned that my biopsy showed empty bone marrow with no leukemia present.  It was such an exciting day and my first good results in this whole process.  But I will enjoy even more this year of being at home with my kids where a mom is supposed to be!