So, I don't know where I stand.
I suspect when your blood production is so lame that you are rushed in for a transfusion, perhaps the status quo has changed. While I was there they stuck something in my hip bone to get a sample of bone marrow to study. A BMB, bone marrow biopsy. Now we expect to know result tomorrow.
Never did I think I would have, need, or maybe even accept a blood transfusion. Seemed like the right thing to do at the time. My mother would have refused. So would many religions. It is probable that deadly results would have occurred by now.
I kept finding I was winded at the slightest activity, sometimes mild little adventures like walking to my car, ten feet outside my door. Or walking across the room. It had been going on awhile, but was rapidly getting worse, so I finally called the world of medicine.
I don't get these bureaucratic organizations. I call, thinking I am getting the office of my primary care lady, whom I rarely see. I explain the problem and say I want to see what she has to say. Next thing I know they are making an appointment with a pulmonary specialists I have never seen. I tell the girl I want the hematologist in this loop as it is likely the blood issue. Right over her head. She didn't consult the primary either. Nuts.
I decide that approach is no good. So, I go online to the Scripps patient interface and cancel the appointment. I can't make appointments online but I can message these people. So, I shoot one to the hematologist office explaining the symptoms, and since I know their psychology, I tell them I am stopping the chemo pill unless I hear otherwise, because I think maybe we are running deficiencies.
They immediately order a lab for me to do asap. Then late that night I get a call at home urging me in immediately. He seemed a bit miffed that I was even conscious. I negotiate to come in the morning. Etc.
More tests and still hgb levels around 6 or 7. Whites about double what's max good value, and reds about half what's bottom of envelope for OK. Yikes, they say. WTF, I say, except I really knew it was coming. I knew for quite awhile. Just did. But beyond that I know nothing. I have no clue where we go from here, if we even do.
We'll get results of the BMB then what that leaves in the realm of treatment options I do not know. I am not sure I won't have some tough decisions. If a person could come here and make my little 400 sf cabin perfect I would pay $2000 or $3000. Then I'd have peace of mind.
I have taxes to do, but I can handle that once I find the W whatever forms. I'm a little late on filing. I still resent the fact that people have allowed themselves to be normalized into being subjects of the state. It is wrong. It is not the same thing as being a citizen and asset to the community.
It is what it is. Now, I wonder if I will see the next birthday. My number one goal is to get all in order, snatch whatever I have out of grimy government fingers, and not leave work for others. Not much else I can ask at the moment.
There is a remote possibility this stuff can be sort of contained in ways to keep me going for a decade or more. The cool part is that I still look healthy. Better to look good than to be good.
I did three gigs in one weekend after the transfusion. It was shocking how it feels to have energy. I had forgotten--so many months trying to fake it when around people or playing music. So, now I play because I can, and because it clears my mind. I tell myself to play like there is no tomorrow. Dark humor I suppose, but who knows? It may be reality.
I hope I did more good than harm. I know I have hurt people in long ago times, mostly out of complete ignorance and no grasp of the realities of life. I cannot stand to see others in pain, and am horrified at the thought of me being the cause of any of it. With luck I may find that I have done more good.
So, I think they should play this as someone tosses the ashes in the most suitable place--Gulf Stream, Rockies, off my nephew's Seattle boat? I would go the traditional in a box route but that requires buying real estate and God only knows what fees and regulations come in to play. So forget it.