Before I ever had a transfusion, I thought of them as scary, critical and dangerous. I never EVER thought I would need one. At this point, I’ve had 14 of them, and I now equate a transfusion to a chill sesh – relaxing in a lounge chair, reading, watching TV or a movie, and visiting with my nurse friends. I get pillows and warm blankets and Hoag’s fantastic army of volunteers come around with endless treats. Nothing scary about transfusions 🙂
I’ll say it again. NSHLAMOAANFP (Neupogen Shots Hurt Like A Mo Fo And Are Not For Pussies) They are killing me – I’m not sure why they are so f-ing painful, but getting them everyday is really wearing on me. The bone pain from these shots is settling in on my lower back. I’m wondering if all these injection site bruises on my triceps will have subsided a few years from now, when I am living in the retirement home. I’d hate to have black and blue flesh flopping around when I raise my arm, yelling “Bingo!”
My most recent blood counts are down on all 3 fronts. My platelets are moving down in their typical fashion, between 10 and 20 points a day. My latest count was 9 – an all-time low (normal range is 150-440). I’ve been averaging platelet transfusions every 4 days at my HAFH (Hoag Away From Home), with my most recent last Wednesday afternoon. My red cells are low as well, so I had a one unit transfusion on Wednesday afternoon and another on Thursday morning. The low hemoglobin makes me exhausted, weak, short of breath and a little shaky. My white markers are all setting records for the lowest they’ve been since I began this brawl. One of the markers that goes into the white cell count is the MID, and mine measures 0.0, just like Blutarsky’s GPA at Faber College!
The various medications I have tried do not seem to have a positive impact on my blood counts, and my team of docs don’t know what else they can do to keep me alive, so they have decided to send me to the City of Hope in Duarte, CA to meet with their gurus in the field of hematology. They suspect the problem is in my bone marrow, so I will probably have a second bone marrow biopsy soon to see WTF is going on in there. The City of Hope is known for their expertise in this area. I have an appointment there today, thanks to Todd’s tireless efforts to get me in. A few good friends (Tony, Jon and Harold) are well connected there, and they have arranged to get me in front of the top specialists. My case will be presented to a panel of experts next Wednesday.