Monday, July 23, 2012

Childhood Flashback 4: Staging

On the day of his admission, the boy's parents drove him an hour up Route 95 to Baltimore and its depressed inner city of red brick public housing developments. Johns Hopkins Hospital in 1981 was a warren of long, windowless, flourescently lit hallways with rust-colored carpets and walls. Rushing crowds of doctors, administrators, patients, and families filled them, each intent on their separate destination.

After check-in, his parents took him to the 8th floor of the pediatrics building which had rows of rooms on either side of a nurses' station. In the boys memory, it would later seem as if everything in ward--the walls, the floors, even the lights--were pale shade of green in never-ending nighttime.

The first step of the process was staging. They knew the nature of the tumor. They did not know its extent. Had it spread to local lymph nodes and to other organs? To the bone marrow? That would determine the boy's chances of survival and his treatment.

Over days, the boy had scans and blood tests. The only tests he would remember years later was the spinal tap the bone marrow biopsy. Paul did them. Both of them were done to his back, where he could not see, and with him curled up on his side like a fetus.

The initial spinal tap was to look for any sign that the tumor had broken the barrier that separated the brain and spinal cord from the rest of the body. The idea of a spinal tap is more painful than it's execution. The spinal cord is bathed in cerebro-spinal fluid contained in the thecal sack. Low in the back, the spinal cord dwindles to a horsetail of separated nerve roots and a tether that anchors it to the base of the spine. There, where there is no longer a risk of impaling the cord itself, a needle can be slipped between the bones of the spine to puncture the thecal sack and draw out a few drops of the fluid. Even with his limited knowledge of anatomy and with Paul's gentle touch the boy quailed at the idea of a needle in such a place, but it was relatively painless as it would be the dozens of times it would be repeated over the next two years to inject chemotherapy.

The bone marrow biopsy is conceptually simpler. The marrow that fills most of the bones of the body is another critical area where cancer may spread. The hip bone is relatively thin and close to the surface. The needle and syringe for the procedure are enormous. When Paul inserted the needle and pulled, the boy felt the horrible suction in his bone, but luckily, his memory was dulled by sedation.

The cerebrospinal fluid and the marrow showed no tumor cells. The only new finding was suspicious mass in the boy's left shoulder

Monday, July 16, 2012

HBO Series Pulled

Friday, July 13th was the first day of the rest of my life.

Of course, that's true every day, but the difference is that I won't be spending any more mornings isolated in a pressurized acrylic tube urinating in my glasses case, or desperately trying to get Nurse Annamarie's* attention to turn the DVD on, because if I have to watch Nate for more than a few minutes again, I'll claw my eyes out. (Why was I urinating in my glasses case? Because the case where I put my glasses was, in fact, a urinal. When I slept, I usually put my glasses in the sterile and unused urinal they always sent in with me, to keep them safe. But I did take my glasses out of it before urinating.)

I almost had a nervous breakdown three days ago when one of the HBO docs suggested that I consult my ENT specialist about having more HBO treatments. So I guess there remains a theoretical possibility that someone might suggest I do even more HBO. I don't know if I would accept that  advice, though. I was beginning to get mighty sick of that tube.

Meanwhile, for at least the next week or two, I will continue to snarf antibiotics every morning and night. Still a time suck, but less so. Let's just all hope I don't breed some new strain of superbacteria that will crawl out of my nose and destroy the world.

*Hi, Annamarie!

Monday, July 2, 2012

Childhood Flashback 3. Realizing

"Do you want to tell him, or would you like me to?"

"Oh, please, you tell him for us."

*                       *                       *

The boy's parents entered his hospital room followed by a stranger. His hair was strawberry blonde. His mustache was bushy.

"I'm Dr. Peebles, but you can call me Paul. I'm going to be your doctor. . ."

Paul spoke, and his lips moved. The stump of Paul's right ring finger waved as the hand gestured back and forth, up and down. The tone of his voice was serious, but he smiled reassuringly. He touched the boy's shoulder.

". . .operation. . .two steps forward, one step back. . . a long, hard road, but we can get through this. Now, do you have any questions?"

"Yes. What happened to your finger?"

*                       *                       *
The ramp spiraled up through the hospital's underground parking lot. A faded red VW station wagon sputtered as it climbed.

"Mom, why do I need another operation?"

She focused ahead, shifting gears. "You have cancer. They need to make sure they got all of it. Paul told you. Don't you remember?"

"No, he didn't! He said I had a tumor," said the boy.

"No, Sweetie. He said you have cancer."

His eyes stung as they emerged into the harsh autumn light.

*                       *                       *

She came in and lay down on the boy's blanket with him. And they wept.

The father entered and sat next to them. He made an unfamiliar keening sound that was almost mocking. But then, his eyes clenched, and tears fell. The father sobbed.