side-effects, schedule, etc.
will keep you informed.
still having some trouble staying regular
(without tipping the scales into diarrhea).
chas and i are carefully treading those waters.
fortunately, it seems my bowel cycle
coincides with the world cup,
so when i am doubled over on the sofa
at least there’s something to watch on TV!
love you very much.
looking forward to seeing you soon.
chapter forty-five
another day without music
Your mother scheduled a wheelchair to get us through airport departures. It was a great idea, but I had to convince you — you were so stubborn. “It’s a lot of walking, babe, and with our carry-ons, it could be helpful.” I was drained empty from packing and now pictured myself lugging three suitcases and you through the gate. The morning we left I was even a tad jealous as I piled the carry-ons onto your lap and wheeled you around.
I tried my best not to crash into things and people. You kept snickering at my poor steering skills, which made me exaggerate the problem. I turned the metal chair and bulldozed a young man just to hear you laugh and apologize. I was so caught up in hearing you giggle that I didn’t notice people were staring. I stuck out my tongue at a little girl who watched us get ushered through security and straight onto the plane like royalty.
Before the plane left the tarmac you got up to use the bathroom. I settled in with books and pills and needed things, close enough to reach. Someone tapped my shoulder. I turned to see an older woman, smiling with kind eyes and wrinkled lips. “God bless you,” she whispered. My automatic response was a pleasant, “Thank you. You, too.”
You came back down the aisle, your once full frame was weathered and wilted. Your skin was ruddy and pocked, transparent and veiny — that’s when I noticed it. That’s when the realization set in. When people looked at you, they saw a sick person. This sounds strange, but I never noticed it. You were always you. The cancer was a separate something, a way of life that was imposed from the outside, but not written on your body. I knew you were tired, but most days, I never stepped back long enough to evaluate the marks it left. Your eye sockets had sunk deep into your thinning face and your jawbones jutted out. With sense of panic, of embarrassment, I looked around the plane. Passengers looked sad, concerned. A man got up from his chair, put his hand on your shoulder and asked if he could help. You smiled and said, “Thank you, but I think I got it.” You walked slow and hunched, pulling at your neck to cover the tumor that collared shirts could no longer hide. I stood up to help you into your seat.
I never looked back at the woman who blessed us but I could feel her praying behind us.
…
It had been a couple of weeks since your parents had seen you last. You collapsed into your mother’s arms at arrivals. Instantly she scooped you up and supported your every move. I can’t imagine what she was going through then. I think so much of her own perspective and direction was considering your seventy-five-year-old stepfather and even her own health concerns. Those are the people who get sick, get cancer. Old people. She was blindsided by your disease and care. You could see it in the way she asked me how to apply ointments to your sores, or her questions about why you kept hiccupping.
“The doctors think it might be a reaction to the pain medication or the new oral chemo — that, or it’s likely from pressure on the diaphragm.”
I don’t think she ever expected her son to get sick, and that she wouldn’t be able to heal you with a Band-Aid or cough medicine or a hug. For her sake, you didn’t want to be sick. You didn’t want her to see you this way. But only two days in Maine and you had worsened, faster than we could track. It felt as if we were running, always running to catch up with the disease. By the time I understood what to do with a new symptom, another appeared, more demanding than the last. Walking up the stairs became almost impossible. Twenty-four steps took twenty-four minutes. Bathing was your only form of relief. Floating reduced the pressure on your lower back. You took two, sometimes three in a day. Baths and naps.
We never really left the cabin in Maine. You wanted to go kayaking and sailing, but you didn’t have enough energy to even walk down to the dock. We never went to your favorite restaurant, The Lobster Pound. There was a gradual decrease in your appetite, even though your mother did her damnedest to get you eating something, preferably healthy somethings. She even tried your favorite, peanut butter and jelly. Nothing tasted good. Cravings for pizza and ice cream came and went. Liquids were better than solids. Your stepfather bought some Ensure.
…
Your brothers and family came to spend some time with you. I know it was disappointing that you couldn’t do the things you had done every summer since childhood. I surely didn’t want to do those things without you. Your stepfather wanted to go hiking, your brother wanted to go antiquing and wine tasting. No and no. That wasn’t why I came. I came to vacation with you. To relax with you. If that meant lounging in bed for an entire week, I was all for it. Yet your mother persuaded me to go into town with your brother and his wife. I think it was more for her sake than my own — she wanted some private time with you.
We went out to lunch and took the boat there. It was lovely to get out of the cabin and be on the lake and in the warmth of the sun. I ordered this amazing, creamy clam chowder.
Your brother talked. “My mom really wants Anthony to come home to DC…” I kept eating my chowder, not really listening but wishing you were here to share a bite. “It makes the most sense for him to move to DC. He can live at the house with her, and she can care for him and still work. I’ll be a lot closer, too, and can help. Anthony needs to move home to DC. You need to convince him of that.”
“I’m sorry, what?” I stared at him confused. “Wait, what? Persuade him to move to DC?” I was no longer hungry. “We need to do a lot of things…” I felt pushed in a corner. I never even thought about moving to DC. It made sense to be closer to family for extra help, but all your doctors were in California, and all your friends. I was there. Why would we move? Because your mother could take care of you? Wasn’t I doing that? I wanted to get back to you that very second, get back to the safety of you. I wanted to go home.
…
In bed snuggling with pillows and blankets, I laid my head in your lap and you moved my hair from my face.
“Did your mother talk to you today? About moving to DC?”
“Yeah.”
“How do you feel about the idea?” I closed my eyes, braced myself for your answer.
“God, no. Never.” I looked up at you.
“Why?”
“All my doctors are in LA, all my friends, and you’re there. My life is in Venice. That’s my home, with you and Gladys in our house. Moving to DC feels like moving in with my parents, to what? Die? I don’t want that. I wouldn’t let you quit work to move to DC, and I’m not going there without you. I wouldn’t even consider that. There’s nothing more to talk about… Why, did my brother talk to you? Did you think I would agree to moving?”
“No. Not for a second.” I couldn’t help but curl up in your lap. You had this way of always taking care of me.
When your mother asked me again that night, and your brother asked again, I said, “No, Anthony doesn’t want to move to DC. I can’t convince him.” Which was the truth. You had made up your mind.
…
This was one of those tub conversations. Those intimate moments where I’m scrubbing your boney, acne-scarred back and shampooing your thinning hair. Tub conversations replaced our after-sex intimate moments. They were ways in which I could touch you, washing your arm with as much love as the soap would allow. It’s when the simplest words and tenderhearted emotions came slipping out in breaths and sighs and sentiments. It’s where we talked about dying and death and the afterlife and God and love. We talked about the things that scared you most about death. It wa
sn’t so much the act of it. What scared you most was leaving.
“The idea of dying isn’t as scary as much as not being there for my family and friends. I hate not being there for you. I want to carry on this love I feel for you. I want to continue carrying on the life we’ve been living.”
I wanted to say so much, but it hurt to even breathe.
“I think I’d like to be cremated.” You’d think I’d flinch at the thought, but it was a discussion we needed to have. One we’d been avoiding. I was thankful I didn’t have to ask.
“Yep, cremated. Let’s burn the shit out of this cancer.” I actually laughed a little. I liked the idea of burning your body. Is that crazy? It tasted like revenge, our way to fight back and win.
“I know where I’d like my ashes spread — ”
“Look at me, I need to wash your face.” You closed your eyes and leaned forward. I couldn’t help but kiss you first, before washing.
“Okay, you fool, where am I going to spread your ashes?” I could feel you smile in my hands. That’s what started me crying. It was our fourth night of Maine tubs and the flood gates opened. You started to cry, too, when you told me where you wanted your ashes spread.
“I’m afraid I’m going to die soon. I am dying. I can feel it…”
You looked deep into my eyes, as I looked deep into yours. They were telling me that nothing else mattered. We were a part of each other. Even though we were crying, I wasn’t afraid anymore. You smiled as if you achieved what you had come here to do.
I kissed your eyelids. “I love you,” I said.
“I love you more.”
…
I poured myself a cup of tea and sat with your mother.
“How is he feeling?”
“Tired, but happy to be here. Happy to be with his family, with you.”
She smiled softly. “He’s never brought a girl to Maine before.”
“He hasn’t?” I swallowed hard.
“Nope. I think he was waiting for the perfect person to share it with.”
I put my face into my hands and started to cry.
Her embrace was strong. “I’m worried that the cancer is winning and the pain he is facing will only get worse,” she said with a shaky voice. “I feel pain for the things he feels he’s missing. He’s not supposed to be doing these things right now. He’s got other things he should be doing, other than dealing with cancer. I fear those things the most, the things he is missing.” Now we were both crying. “I never thought my baby would get cancer…”
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 you
r 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.”
Even if I Am Page 23