He told me that he and one of his terminal patients played a game every day he visited the patient at the hospice. The hem-onc brought music recordings with him, and he’d try to stump the terminal patient, who knew a lot about classical music. Like, with the slow movement of one of the less famous of Mozart’s piano sonatas. And the terminal patient, who had a lot of records with him, would usually guess correctly what the piece was, and then he would try to stump the hem-onc.
The hem-onc visited his terminal patient first thing in the morning, then visited me, and then saw the rest of his patients.
He had a daughter about my age, and their relationship was not good, and it troubled him. She was a lesbian, and he didn’t know how to talk to a teenaged lesbian daughter.
Talking to me was easy for him. He knew how to talk to people with blood diseases.
One day he told me his terminal patient, the one with all the classical records, had died.
How many other terminal patients did he have? How many deaths had my hem-onc witnessed? Did he feel like a failure when his patients died? And by that metric, what case isn’t a failure, in the end?
What metric is used instead of immortality to judge the success of a hem-onc?
The Sikh
My first central line was implanted in the middle of the night. I needed apheresis right away, and my arm veins were finally blown. That’s a clinical term. They had scarred and narrowed. I still have my tracks. I should have been given a central line earlier, but every apheresis session was declared the last one I’d ever need, so it was a while before anyone noticed it was time to get serious.
Central lines flow through a catheter into a large vein, usually the vena cava. Central lines can deliver more toxic fluids that would irritate smaller veins, and they have room to contain multiple lumens, and they can deliver fluids faster, as the heart distributes them immediately.
My hematologist asked me if I wanted my parents there while it was implanted, and though I’d never have thought of bothering them in the middle of the night, I thought he was telling me that getting a central line was something that one’s parents were supposed to be there for, so I said sure. And so my parents came to watch me get my first central line implanted.
My hematologist might have thought I’d wanted my parents there to help me feel less fearful, but I didn’t know enough about the procedure to feel fearful. Yet I was old enough to have known that watching their child have vascular surgery isn’t something parents should do.
I didn’t have to watch. I was on my back, and the Sikh doctor, who attached his surgical mask behind his head with a bent paper clip, as the tops of his ears were tucked under his white turban, jabbed away at my subclavian vein.
I’d been told I’d be injected with lidocaine, and that a needle would be stuck into my subclavian vein at a point just below my collarbone, and that while the needle was in the vein, a tube would be threaded over it and pushed down, through my skin, and through the hole in the vein, and deep into the vein, over the needle, and that the tube would be taped (and later sewn) to my skin, and that the needle would then be withdrawn, leaving the tube in place.
What if I’d been told someone would be standing over me, massaging my collarbone, while I lay blindfolded? That’s something I would have tolerated. And up to the point that the lidocaine began to wear off, that’s almost what it felt like.
If the procedure had lasted only a couple of minutes, I might have been all right.
But the doctor flubbed the procedure. He kept getting the needle in, but he couldn’t jam the tube over it. The entry angle was too sharp.
So the lidocaine began to wear off, and the doctor kept telling the interns and the surgery residents exactly what the trouble was, and he became frustrated when he couldn’t get the tube into me, and tried another, thinner tube, and sweated onto me, and stunk up the entire room with his frustration.
He tried again and again to jam the tube into my vein. Every now and then he had to stop and apply pressure, as I was bleeding. At one point I thought I felt a jet of blood spurt into my chest cavity, and that’s when I lost my composure.
Months later, after his hair had gone from steel gray to white, my father told me it had looked like a horror movie.
The Taste
The fresh frozen plasma was thawed before it was infused. The four half-liter glass bottles of albumin were left at room temperature.
For the first twenty or thirty apheresis sessions, I lay under several blankets, which didn’t help the cold but helped me think at least I was trying.
The temperature in blood vessels is warmer than room temperature, of course, by about thirty degrees Fahrenheit. I was very slowly infused with several liters of fluid that was thirty degrees colder than the rest of my body.
By the time I had the permanent line, the cold infusions went in very close to my heart. I need to describe that feeling, make a reader stop reading for a moment and think, Now I understand how cold it felt.
But I’m just going to say it felt like liquid, thirty degrees colder than my body, being infused slowly but directly into my heart, for four hours.
The albumin had a taste. To be more specific, the albumin had two tastes, because the hospital bought albumin from two different manufacturers.
Both companies used the same 500 cc clear glass bottles, which were sealed at the narrow end with rubber drums that could be sterilized and punctured with sterile needles and connected to sterile tubing.
One company’s albumin was the color of light beer and the other company’s was the color of lager. And the dark albumin tasted worse.
I never could decide whether it was chemical bad or organic bad.
I had to taste it for three or four hours, unabatedly, and there was nothing I could do to change the taste of it. It wasn’t touching the surface of my tongue, but it was going into the blood in my heart, which pumped it into every cell in my body. It was in my tongue.
The only thing that masked the taste of the albumin was wintergreen-flavored candy.
Tabitha, my favorite apheresis nurse, always arrived with a bag of wintergreen candies, individually wrapped. She picked them out of the mix for me — there were red and yellow and purple candies, too, and different kinds of mint — and left a small pile of them behind, because the taste of the albumin lasted for a while after the infusion was over, and she wanted to make sure I had enough wintergreen to get through the rest of the day without having to taste any albumin. Without that reminder of how I’d spent the morning.
The Cheerleader
I attended a public school with cheerleaders, pep rallies, and powder-puff football. My high school’s mascot was the Red Raider, and he was represented by an American Indian wearing a headdress and waving a tomahawk.
One day every fall, just before Thanksgiving, the principal would remind us over the public address system that today was the biggest pep rally of the year and that our school needed us to show our spirit.