At the beginning of the AIDS epidemic, Pneumocystis carinii pneumonia (PCP) was rapidly recognized as the most frequent and severe respiratory invifecion in HIV-positive patients. Between 1990 and 1997, PCP remained indicative of AIDS in more than 15% of the cases.
Kaposi sarcoma, a common cancer among people living with AIDS, was tied to the patients CD4 and T cell count.
Later that day - April 23, 1994
It was 5:30 p.m. The doctor had cleared the waiting room. We were in Garden Grove – a town that in 1994 felt a bit like being on the other side of the tracks. The neighborhood streets in Garden Grove had no sidewalk curbs and plenty of weeds. We were there because Bob had no health insurance. With the crash and burn of our family business, he’d been forced to give it up. Choices are limited for those with no insurance. Sitting in the waiting room with my nephew, Matt, and my brother felt like a cruel irony. As if we needed any further evidence that our fortunes had turned – our hope now rested with a doctor on Garden Grove Boulevard. The three of us sat and waited. Bob’s dementia was becoming more obvious. He babbled on making no sense. It felt like Matt and I were in an absurdist drama. There was a grave air to this waiting room. The door finally opened and out came Dr. Kooshian. One look at the doctor’s eyes looking at Bob told us that he knew what he was looking at even if we still didn’t.
He led us back into the examining room.
The doctor held Bob’s hand.
My eyes focused on the doctor’s hands. Those comforting, tender hands.
Man to man.
With their touch, I got a glimpse into my brother’s hidden world.
Matt answered the questions.
“Is there a partner?” Dr. Kooshian asked.
“Yes there is a partner,” Matt answered.
“Is he positive?”
“No he is negative.”
At least we assumed he was negative. We’d never discussed it. This conversation had moved beyond the boundaries of anything any of us had ever discussed about any of this. A family with secrets. Or perhaps, to be less harsh, a family that honored Bob’s privacy.
A family that accepted what was without judgment. What, after all was there to talk about?
A partner of over twenty-five years. Healthy.
We had no way of explaining this. Answering for this. Bob’s dementia had made Matt the spokesman for the family.
“Symptoms?” Dr. Kooshian asked.
The list went on.
“Memory loss, head aches, weight loss, shortness of breath, purple spots on his feet, cramping, unquenchable thirst…”
The doctor examines Bob.
Matt’s eyes meet mine as we watch. We look at Bob. We look at each other. We want answers.
The doctor tells Matt and I to go into his office. Bob stays in the examining room.
The doctor tells us that Bob has pneumonia/ cancer/ possibly Toxoplasmosis/ possibly Meningitis/ possibly TB/ Kaposi Sarcoma.
He defines terms: T-Cells, CD 4 Cells
Matt and I sit, pens in hand ready to take notes.
Matt writes three words and stops.
“Dad has cancer.”
“How long does he have?” Matt asks.
The doctor says anywhere from two years to three months.
And then he asks, “Why did it take you so long to bring him in?”
This is a question we cannot answer.
This is a question we will never be able to answer.
This is a question for Bob. But it was too late for him to answer.
“He needs to go to the hospital immediately,” the doctor said.
“There is a problem,” I say.
“Bob has no insurance.”
So the doctor arranges admission as an indigent.
The hospital is next door. We just need to walk him over. Matt and I take Bob’s arms and slowly shuffle to the elevator.
Bob sucks in air. Exhausted.
We sit him on a couch in the lobby of the doctor’s office and Matt goes to find a wheel chair.
Bob’s feet cramp.
I massage them.
We get to the emergency room 7:00 p.m.
We’re starving. It’s going to be a while. I run to Carl’s, Jr. Bob doesn’t eat. I devour my burger.
Bob’s feet cramp.
Matt takes one of Bob’s feet and I take the other and we massage them.
I think, O.K. now what do we do?
“Bob,” I ask, “where is your birth certificate?” It seemed any time there was official business, a person needed their birth certificate. I figured I would need his driver’s license. His social security card.
Bob’s feet cramp.
Matt holds a Carl’s Jr. cup full of ice to them. The cold helps.
“In my closet in the metal case,” he tells me. A moment of lucidity.
Three hours later, Bob is rolled by gurney to room 603.
The nurse shows him the controls on his bed.
Our walk to the elevator in the doctor’s office would turn out to be Bob’s last.
It would be one month before he was released from the hospital.
(Aria-A Sister's Journey With AIDS to be continued in next post The Hospital)