Roll out of bed and after about three cups of tea, my brain starts to function. Drop my son off at school and then it's back down to MD Anderson with my mom and dad. We need to find out where his hemoglobin is. I hope to get him down and his transfusion started before lunch since I have a lunch date with a buddy that I had been looking forward to. But there's no changing the speed at which MDACC works. It's not until after lunch that we get the results. Two units of blood had only bumped his hemoglobin from 6.6 on Friday up to 7.9 on Monday, still below that critical threshold of 8. Well, that would explain the extreme fatigue and pale pallor. Part of me wonders why the transfusion didn't bump it more but there's nothing to be done about it so I just file it into the Misc. Folder of Medical Observations in the back of my brain. He gets the orders for two more units of blood when my brother calls. He's got an appointment the next morning so my afternoon is spent driving to get him. Fortunately, his father-in-law is willing to drive him halfway so I only have to drive halfway to Dallas. For that small act, I'm extremely grateful because that means we'll get my brother to bed at a decent hour. It continues to amaze me how much effort from multiple people it takes to properly take care of a cancer patient, much less two.
My dad's transfusion is scheduled for 4:30pm, which is later than the lunch start I had hoped for but I feel better knowing the process is in motion. I pick up my brother in Fairfield, Texas and when I call my parents about 6pm, still no transfusion. Uh-oh. They can't find a blood to match my dad. My dad mentions something about an "a-n-t-i-b-o-d-y". He's not sure what that means. Unfortunately, I do. My mom is angry and and frustratedly ponders, "why is it that the biggest cancer center in the world can't find a blood match?" I don't get to be the son right now. I can't shrug my shoulders and commiserate with my mom long distance for the phone. At this point, I envy my oldest brother. He came down, visited with everybody and got to relate purely as a concerned relative (not that that's easy because it's not). And then he got to get on a plane and go back to his life. I do not begrudge him that. He's got his own trials and struggles to wrestle with. Everybody does. But, nonetheless, I still envy him. And putting the son to the side, I formulate the answer to my mom's question as a doctor-in-training. My reply, "the question isn't why they can't find a match. That's not the problem. The question is what is going on in dad that's making it difficult to find a match. We need to bring this up Wednesday with the doc. He may be rejecting the blood transfusions." I hang up my phone and tell my brother, "I hate this f*#&ing disease." But there's nothing I can do about it now so I file it away in the back of mind where I have my list of questions for the doc on Wednesday.
Regarding my brother, it's been awhile since I've written about him because it's been awhile since anything has happened. A couple weeks back, he had the bone marrow biopsy that showed that the tumor cells and scar tissue were crowding out the regular bone marrow cells, hence the severe anemia. We got the news from the hematologist and he pretty much said there was nothing he could do. Back to the oncologist then. Clinical trials are pretty much swept from the table because we can't get his hemoglobin up above the threshold for him to qualify. And in extreme frustration, we wait. We don't hear anything from his oncologist. We try and try to get an appointment but the doc is out of town. Panic starts to set in because absolutely nothing is happening. Just last Friday, my brother receives word from the nurse that the doc is waiting for the final chromosomal analysis before making any decisions. Ahhhh, it all makes sense now. The doc had informed.....holy crap. We're sitting in the waiting room for my brother's PET scan and a dad just rolls a stroller holding a child that can't be older than two years old in for a PET scan. This damned disease is an indiscriminate destroyer. I can't tell you how much I hate cancer......The doc had informed me that he needed to know why my brother's anemia was so bad before initiating treatment. I just assumed once the hematologist said "tumor invasion/myelofibrosis", that was the final word. I completely forgot about the leukemia assessment. That takes 3-4 weeks. So in the end, the doc wasn't ignoring him. He was still being deliberate and methodical in his treatment considerations. Granted, he certainly could've conveyed that better but we finally get an appointment and it'll be back down to MD Anderson for the fourth time in six days.