From a doctor's perspective, I am not a good patient. I question everything a doctor tells me ad nauseum. I usually argue with a doctor about prescribed treatments. Often, I choose not to do what the doctor says. I typically am suspicious of doctors' motives, so when I find one that I feel I can trust, I stick with them for life - theirs or mine.
In the beginning, I did not trust my hematologist completely. But because of this strange and unknown factor affecting my body, I was willing to listen to her. At my first appointment, several tubes of blood were drawn from my arm. A nurse ushered me into an examination room where she took the standard stats: body temperature, blood pressure, pulse rate. And then she instructed me to undress and put on a paper gown, open in the back. She left me alone to wait for the doctor. And this is the most uncomfortable moment: being undressed, cold and apprehensive in a sterile and alien environment.
A physician's assistant examined me and spoke to me in soothing tones. I was beginning to feel at ease when the hematologist came in. She had a different air than the physician's assistant: one of brisk efficiency. I tried very hard to admire her for her accomplishment of becoming a specialist in a male-dominated field. I wanted very much to like her. But she was cold and unapproachable. She spat out her assessment of the situation and what I needed to do about it at radid-fire speed. I tried hard to absorb it all as quickly as it was thrown at me.
The reduced platelet count was, in her estimation, the result of a condition called Idiopathic Thrombopoetic Purpura - ITP for short. This is an auto-immune condition - a condition in which the body attacks itself. In my case, my anti-bodies - those nice little mechanisms of defense which clean your blood of any invading substance - were attaching themselves to my platelets as if they were invading substances. Thus marked for destruction, the platelets get absorbed by my spleen where they disappear forever. As the word "idiopathic" implies, no one understands how or why this happens. Likewise, no one really knows what to do to reverse this trend. There are canonized treatment options which are successful to varying degrees. But there's no surefire cure.
The hematologist prescribed a high dose of the steroid prednisone. This is the first line of treatment used across the board whenever a patient is diagnosed with ITP. The point of taking prednisone is to suppress the immune system so it won't interfere with the existence of platelets.
So I took this high dose of prednisone. The side effects of steroids are undeniable. Everyone is affected differently. But I will say this, the phenomenon of "roid rage" is very real. Most of the time, I felt an undercurrent of anger in me which was very much like expecting the Incredible Hulk to burst out of my skin at any moment and wreak havoc.
After several weeks of steroids and weekly platelet counts, the hematologist sat down with me and in a similar rapid-fire way informed me that "we're going to schedule a bone marrow biopsy. You need to have three immunizations (she writes these down). We're looking at having your spleen removed."
The panic and questions arose simultaneously. Eventually I gained my composure enough to argue and question. A splenectomy (the second line of treatment) is only 50% effective in sending an ITP patient into remission. The potential infections one can acquire without a spleen sounded more life-threatening than the low platelet count. I agreed to the bone marrow biopsy for the sake of ruling out any other underlying causes (like leukemia). But I held my tongue about the splenectomy.
I decided I wanted to be a tough guy and go by myself to my biopsy. I practiced a form of meditation that I felt would come to my aid should I begin to feel frightened. I felt a nervous excitement such as one might feel at the start of a great adventure until I got on the table in the examination room. And then, a cold hard fear set in. I was living - in my mind - a dead man walking scenario.
I expected something like a hospital bed, all white with sheets and pillows that I could cling to. But I was placed belly down on a paper-covered vinyl examination table. I didn't even pull my pants all the way down. 'Breathe,' I thought, 'just breathe.' I focused on the air entering my lungs and the carbon dioxide leaving them. In, out, in out.
The hematologist made remarks about cars in the parking lot below, about men with leaf blowers there too. She asked questions about my home, my family. She tried to be amiable as she sterilized my ass cheek and numbed it. And then she plunged the long thin rod - an aspirator - into my flesh, down through my hip and directly into the marrow of my thigh bone.
The pain was brief. But it was the most excruciating sensation I have ever known. Though over as quickly as it began, it sent waves of fear and panic through my body which lingered and maintained the pain. I fought back tears. I was confused. My body and mind were in a form of shock.
The hematologist was with me for about ten minutes. Afterwards, the kind attending nurse lingered to make sure I was alright. She had me lay on my back to put pressure on the wound. She left me alone on the paper-covered vinyl for several minutes. I used this time to try and compose myself. I returned to my breath - in, out, in out.
The nurse returned to see how I was doing. I asked if I could see the piece of marrow that had just been removed from my body. She held up a jar filled with liquid. A tiny spongey mass floated in it. I marveled at the perfection of this substance, this tiny piece of me. It looked like a universe in and of itself. I suddenly felt very protective of it. What will happen to it now? It will be sent to some lab where some anonymous technician will examine it, looking for clues to solve my medical mystery. How could I be sure that the bone marrow taken from my body would be labeled with my name? How could I be sure that the technicians would match my set of lab results with my name? I wanted to accompany my marrow along its journey to be sure it reached the appropriate destination and I was given the correct information. In the end, I submitted myself to a process over which I had no control and trusted that everything would happen exactly as it should.
I slowly lowered myself from the table and picked up my bag to leave. The nurse told me to be sure and take a very long walk this afternoon to avoid potential soreness. I walked past the hematologist's office and said, "thanks, doc." She said, "yes sir! Be sure and take a long walk."
The hematologist had just been up close and personal with my ass. Yet she called me 'sir?' I was still in shock and not completely able to feel indignant at that point. But after the fact I realized that I am not a human being to my hematologist. I am a series of numbers and statistics. I am a problem waiting to be solved. It was at this point that my hematologist ceased having a name. I dubbed her "Dr. Blood."
I did indeed take a long walk the afternoon of my biopsy. I walked to an old cemetary which I used to visit as a child. Back then, I pretended it was haunted and terrified my friends. As a teenager, I found a strange comfort wandering around the ancient graves: some dating back to the eighteenth century. A particular calm overtook me. I experienced this again after my biopsy. The September sky was a brilliant blue and the sun seemed to burst into gold shards across it. In this moment, I was alive and well. And I felt a particular pride in having survived a bone marrow biopsy all by myself.
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