even if i am. (28 page)

chapter forty-six

transatlanticism

I can’t tell you how anyone else feels. But from my point of view as co-patient, cancer is surreal. Waiting at the hospital, I was foggy and confused about why the doctor wanted to admit you. I understood that you lost ten pounds during our trip in Maine. You weren’t eating much, so it made sense. But, now they wanted to give you intravenous food and hydration. It was all happening so fast — your body was losing its ability to maintain itself. Your blood pressure was low, your body temperature fluctuated. There was increased perspiration, clamminess. Your skin was turning a pale yellowish color. Your nail beds, hands and feet were bluish and cold. Your breathing became labored, and you hiccupped for hours. Those hiccups drove me crazy. We tried everything to stop them, and without any reason at all, your breathing would become clear and even.

“Hi, it’s Chas.” I didn’t give your mother the chance to say hello. “I’m calling because they want to admit Anthony into the hospital. Things aren’t good. I think traveling to Maine was taxing. I think you need to be here. You do need to be here. Anthony needs you here…”

“I’ll see if I can get on a flight tomorrow. I call you later.”

I called work next, said I wasn’t coming back to the office anytime soon.

…

From:
stepfather
To:
medical director
CC: mother
CC: [email protected]
CC: [email protected]
Sent:
Wednesday, July 16, 11:18 a.m.
Subject:
Anthony Glass

Again I write to you about the care of our son, Anthony. Please find my letter attached. The matter is quite urgent, and I would be grateful for a prompt reply.

Many thanks, the Glass family

To:
Medical Director, HMO

DATE: July 16

I am Dr. Avery from Washington, DC, father of Anthony Glass, who has widespread metastasis colorectal cancer.
We have spoken and corresponded before about his care.
I remind you that as his cancer proved refractory to chemotherapy, and as the oncologist ran out of therapeutic ammunition, you approved moving his care to Dr. Heinz Lenz at the Norris Cancer Center at USC. We believe he has received excellent care there, but unfortunately his cancer has continued to progress.

Anthony now has metastases in his abdomen, his liver, his lungs, his sacrum and his scapula, and a mass the size of a grapefruit in his neck which is compressing his throat. The result is that he has difficulty swallowing and breathing, and his voice is becoming weak and husky.
He has lost a lot of weight.
His pain is very severe, and adequate pain medication is a major goal of therapy at this time.
Thus the issues today are different, and are very urgent.

From the point of view of Anthony, and of our family, he needs short-term admission to the hospital, intravenous hydration and alimentation for a few days, and deep sedation to allow him to lie flat and quiet enough to permit an MRI, to define the anatomy of the large mass in his neck.
The object is then to irradiate the neck mass and take the pressure off vital structures in his neck. This is Dr. Lenz’s recommendation. He also needs the Fentanyl patches every 48 hours, instead of every 72 hours, as he breaks through and is in agony on the third day.
In the longer run, we are planning to organize hospice care in Anthony’s home.
We do not expect miracles, nor do we want prolonged medical heroics.
But Anthony is desperately uncomfortable and deserves the indicated care without being ground up by the medical system.

We have been told that the HMO may not pay for the hospitalization, or the MRI and neck radiation, or the more frequent Fentanyl patches.
What is the alternative that is being offered?
Is it right that a critically ill patient, a dying patient, should dangle between two medical groups? Is it right that a therapeutic relationship should be severed when it is needed the most?
Imagine if Anthony were your son.
He is our son.

Many thanks for your attention and consideration.
My wife is there with Anthony and Chas, his girlfriend. I would appreciate a call at home, or my cell. I look forward to your reply.

…

Babe, do you remember when you told me about fat love? It was after York and Julie stopped by with a basket full of goodies. Things they personally selected, knowing the treats you’d love like loose leaf tea and chocolate-covered sugar cookies to dip. They knew you preferred green over black teas and the type of raw honey you swore by. When they arrived with a basket in hand, I started the tea kettle.

I remember the two of them telling a story. I don’t remember what the story was about, I just remember the way they told it. I remember York starting a serious tale and after five minutes of us nodding and debating, Julie would interrupt with her soft sweet voice, ‘No, no. Let me tell you what really happened…” Her sweet demeanor now sure and certain of telling the facts, not fiction, had us in stitches. York wore a delighted smirk as he watched Julie’s lips move. He slipped a finger under the edge of her jeans, at her waist, just to touch her skin and be a part of her. His dimples deepened as her story continued. Sipping tea solely in that moment. Watching love perfectly packaged. We said our goodbyes with hugs and kisses and see-you-soons. You said you were so happy to be a part of it.

“A part of what?”

“Fat love.”

“What’s that?”

“It’s when love isn’t about the great highs and epic lows and passionate honeymoon phases. It’s when love grows fat and healthy and full. When love is as nourishing as a good breakfast. To eat your favorite meal every day and never tire of it. That’s fat love. Like chocolate chip cookies and milk. York and Julie are cookies and milk.”

“What are we?” I was still smiling from their visit.

“Chocolate cake and ice cream. No question.”

I laughed.

“Now get over here and cuddle me already, so I can eat you.” You nibbled my bare shoulder.

…

We all felt safe at the hospital. You slept soundly on your back. Intravenous pain medication, morphine… nothing fancy. I liked that it was a drug I had heard of before. I heard that it’s potent and powerful. Any drug that lets you rest easy, I liked it.

You were sleeping most of the time now. You were relaxed at the hospital, and I could literally see the stress lift from your shoulders as you rolled lightly from side to side in bed. Your mother and I stayed in your room, trying not to wake you. We played cards, did the crossword puzzle, read books, watched television. We took turns from the hospital to home, trading nights, feeling weak but determined to stay by your side.

I moved outside myself, watching me watch your mother rub your head and stare at the wall-mounted television. I watched myself have a conversation over your sluggish body about picking up dog food for Gladys. I watched myself watch Superman and Taline walk in. They visited every day, sometimes twice a day, to monitor the many numbers and markers and facts. One day turned into two, into four, and then my birthday.

“I heard it’s your birthday today,” Taline said. “Happy birthday.”

“It is. Thank you.” You winked at me as Taline wrote down your blood pressure results. You thanked her for remembering. She nodded. My heart sunk and rose to her nods. I needed something to go right. Something to hope for. A birthday gift. I followed her out of the hospital room.

“How much longer do we need to be here?” I asked the back of her head.

Taline gazed past me to your mother standing behind me. She crossed her arms, wringing the skin at her elbows, not sure exactly how to say it. She said each word slowly: “It is time.”

I turned to your mother, confused.

“The disease is moving quickly, too quickly. You have maybe a couple of weeks.” There was a brick in my throat, too heavy to swallow. “Hospice is a good idea at this point. I think it’s time to take him home.” She paused. “I’m so sorry.” She looked at me, and then quickly turned, crying as she walked off.

I turned back to your mother. She looked right through me, waiting for Taline to turn around. Her mouth opened and she said to no one, “I thought I could fix him. That’s what mothers do, they fix their sons. I thought I could fix him and he’d be all better.” She looked at me now, unable to hold onto any feelings. None of this was real. I was hugging your mother, but none of it was real. Not my emotions, not this hospital, not your mother, none of it.

I understood your mother more than I ever had. I understood her love, her need to fix you.

“You can’t fix him.” I hugged her tightly. “I know, because I tried. But you know what we can do? We can keep loving him. We can tell him we love him, and that we’re proud of him. We are proud to love him. That we will all be okay. Because we have each other. We’re family.” Your mother softened in my arms. We continued hugging, taking deep breathes to recover.

Her eyes looked startled. “Should we tell him?”

“No. Let’s just go home.”

Her hands were on my shoulders, staring back. “Thank you, Chas.”

I nodded. “You go ahead. I need a minute first.”

Your mother stood at your door for a moment, regaining her composure. I heard her say to you as she entered, “Good morning, sleepyhead. You hungry?” I admired her. I was amazed at her strength and grace. All this time we wanted the same things. We wanted to fix you. I stood there in the hallway, gazing at the chaos and confusion, looking for an answer, leaning on the wall. I slid to the cold tiled floor. I sat on the ground of the busy hospital hugging my knees trying to fuel my thoughts, free my vision of illness, of patterned scrubs, gurneys, clipboards, IV bags; free my eardrums of the noises produced by the nurses and intercoms calling out codes and names and blood and cuts and bruises. I simply sat there talking to God. I doubted him these days, but I prayed anyway, asking him for this test to end. For Superman to come around the corner and tell me Taline is insane, she shouldn’t even be working here, she’s all wrong. I waited, but Superman never came around the corner. I put my head in my lap and did the only think I knew what to do anymore. I cried.

…

I wish I could’ve seen Superman’s face when you asked if you could take me out to dinner for my birthday that night. I bet he grinned like a father does when his teenage son asks to borrow the car for a date. He agreed to a compromise, a night’s walk through the campus gardens. We had a curfew, after which we needed to be back in bed. The doctors unplugged the fluid hydration. We carried only a small pack of pain medication like an old cassette player. You pushed play to receive another dose and joked, “What should we listen to now. A little
Transatlanticism
maybe?”

Even in the July heat you wore a sweater over your hospital gown and a blanket over your legs for warmth. Your mother kissed you good night on the forehead and left for the evening. I nodded at her, remembering what we agreed on. She smiled back knowingly.

I wheeled you to the elevator and ran out the hospital doors. You howled, “Run faster!” The air was warm and soft, the moon shone brightly, lit our path around campus. We found a small park, only the size of a large backyard and lined with buildings and benches. In the center, grass, roses, agapanthus, large liquid ambers, maples and magnolias all in bloom. The air was fragrant and sweet as candy. Night stretched all around us, and bugs flittered in the park lights, dancing with joy. The sky was filled with stars. Everything shined and sparkled and twinkled as I gave you a tour of my hospital and the spots I frequented.

“And here’s where I eat lunch when you’re at chemo, and over there is…”

“Chas. Can you stop for a minute?”

“Sure.” I stood still, locked the wheels of your chair and walked in front to face you. “You okay?”

“Yeah. I just wanted to see you.” Your eyes twinkled. “You’re beautiful. I know I’ve told you that 284 times, but I needed to tell you again. I think you’re absolutely beautiful.”

I knelt on the concrete and kissed you with my nose. “Make that 285 times.” I teased tickling your cheek with mine.

“This is a perfect night isn’t it?”

I looked around. “You took the words right out of my mouth.”

You grabbed my hand and placed it on your cheek. “It’s not the night that makes it perfect…” You kissed my palm. Closed your eyes and nuzzled your features in my hand.

“Don’t get all sappy on me now.” I kissed your cheek softly but firmly, holding back the rising sorrow. “Let’s go sit over there. I sometimes take a nap on that bench when you are at the day hospital. It’s warm in the sun.”

“You do?”

“Yeah.”

“I hate the idea of you sleeping on a bench. I hate the idea of you here at all.” Babe, I didn’t know what you were about to say, but nerves had you looking down. “Chas, I need you to know…” I sat on the bench, spread my legs and pulled your wheelchair in between, leaned forward and kissed the tip of your chin. “I need you to know… I love you.”

You snatched my breath. I pressed my cheek again to yours. I got this urge to wheel you the hell out of there. To get you drunk, have my way with you like we used to. I wanted you close enough to take off all your clothes and bite your skin.