even if i am. (27 page)

chapter forty-four

hope there’s someone

From:
mother
To:
[email protected]
Sent:
Monday, June 19, 2:20 p.m.
Subject:
Digestion

Heard the rest of the weekend was not so good. Keep me posted when you can.

I had a thought about his “digestion” (diarrhea + constipation and bloating). GNC has some digestive enzymes (multiple), which I take after every meal, which could really help. He could be intolerant to some of the things he eats or drinks.

I was looking at the calendar and Anthony’s chemo. It looks like he has chemo on the 29
th
and then July 13
th
. Brothers + friends arrive on 15
th
. That would mean Maine sometime in between June 30
th
and July 12
th
. Did I figure that right?

From:
[email protected]
To:
mother
Sent:
Monday, June 19, 4:28 p.m.
Subject:
Re: Digestion

Sunday wasn’t too bad, but Saturday was. He ate very little and had a lot of stomach pains. When he did eat he felt better. It was just a bad-feeling day.

Today he is good. He’s in the shower and somewhat active. Plus his appetite is back to what it was.

I think it might be a good idea, the digestive enzymes. I’ll look at GNC online to see what is available. Also, maybe he should start taking a multivitamin?

the chemo schedule is as follows:

june 22 @ 11 a.m.

july 6 @ 12:30 p.m. (He also sees Dr. Lenz this day.)

But this might ALL change if he is approved for the new chemo.

I think we could go to Maine the 7
th
through the 15
th
… or sometime after?

It was nice having you here, and thank you.

I will keep in touch and let you know how he’s doing whenever I can.

Take care,

Chas

From:
mother
To:
[email protected]
Sent:
Tuesday, June 20, 8:08 a.m.
Subject:
Re: Digestion

I’ll stay flexible on the Maine dates. Anthony said the new chemo was approved by his HMO. I guess it then remains to be seen when it becomes available.

It was Vitamin Shoppe MultiEnzymes (my mistake, not GNC).

My preferred brand, Enzymall (not the “Super” ones), not always available.

He might also try the heating pad on his stomach for “gas,” bloating, etc., on warm, not hot.

Hope you make it through the next two weeks okay.

Your mother and me, we have a complicated relationship, even today. I think I’m a harsh reminder that this all happened, that you got cancer. I remember a time when I wanted to yell at her — shake her straight to understanding. “Your son has goddamned cancer. Don’t leave us.”

Unlike her, I didn’t get to walk away. Every damned day I was faced with cancer, and it’s an ugly disease. Cancer has a way of making pain medications work one hour and not the next. It causes intense pain at times, and movement becomes difficult and slow. Cancer gives you backaches and stomachaches, and achy aches. No matter what you cook, even plain microwaved broccoli, cancer steals your appetite. You merely get by on sips and small bites whenever nausea and pain will allow. I had to keep waking you from your pain-medicated sedation and remind you to drink something so at least you weren’t dehydrated. Cancer had me applying cream to bed sores. Cancer gives you bed sores. Did you know that? I didn’t. I didn’t know, but I certainly learned. I had to, because it was my reality now.

From:
[email protected]
To:
mother
Sent:
Tuesday, June 20, 3:33 p.m.
Subject:
Re: Digestion

The highs and lows of Anthony’s health are something he and I have lived with for the past six months. I’m sure we’ll make it through the next two weeks. It’s an unfortunate routine he and I are all too familiar with. Of course, as he gets weaker (and my work gets busier) it starts to get harder — but we are hanging in there as always.

My mom was GREAT help

(cooking, cleaning, running errands),

though she is not Anthony’s mother.

I talked to Anthony about the enzymes and he wasn’t a fan of the idea. He feels he is putting too many things in his belly already, and doesn’t really like the idea of putting in more. He does think a multivitamin might be beneficial. Maybe we should buy both just in case?

He’s sleeping now with the hot pack on his stomach. It seems to be helping. Good idea.

His spirits are low (obviously ever since we got the news). I REALLY think we should start looking into social worker–type outlets for him to vent. Although he shares with you and I some of his feelings, he’s keeping a lot inside. Afraid he might hurt or scare us. If we could get someone to come by the house once a week, it might help him feel a little better.

Plus I do think we should start considering hospice.

And finally…

Anthony called Taline again today to confirm his schedule.

Chemo (including the new type) two weeks on, one week off.

The dates are as follows:

June 22
nd

July 6
th

July 13
th
.

That is it for now.

I hope you are doing well, and finding your own strength.

Take care and we’ll talk soon,

Chas

From:
mother
To:
[email protected]
Sent:
Wednesday, June 21, 1:54 p.m.
Subject:
Hospice

I think the idea of a therapy outlet is important. I think someone from St. Augustine (the church just down the street from your house) would be good. If it would help, I can call the rector to explain up front. Does Anthony have any ideas how he would like this to work?

How did you want to proceed with the hospice? Might ask Taline for her suggestion. If we can do that, then they would provide a social worker/therapist to come to the home.

Let me know when you can about Maine. I can take off by the middle of next week because people will be coming back from vacation.

...

Our only task was to keep you comfortable and out of pain. You’d think it would be more manageable than it was. Oxycodone was prescribed, then the Fentanyl patch. The patch was easy, nothing to swallow — we merely had to apply it to a fatty part of your body. There wasn’t much fat left, though. I stuck it to your hip and spanked your butt.

We kept a log of pains monitored and lists of timelines and ailments with numbers, scales, descriptions, even smiley or frowning faces. We planned a trip to Maine around pain and appointments. We bought first class tickets and swimsuits and sunscreen. We managed constipation, dry mouth, loss of appetite, sleeplessness.
Glory, Glory Hallelujah
, I’d hum as I applied the patch to your tush. But ahh, the glory of it. My tired heart kissed your pale yellow chest, hoping the Fentanyl patch would make summer go by so slowly.

From:
[email protected]
To:
mother
To:
[email protected]
Sent:
Friday, June 30, 10:01 a.m.
Subject:
flooding

has maine been getting as much rain

as the rest of the mid-atlantic?

very very very excited about coming out next week.

hope it’s dry enough for us.

thanks for talking to the pain specialist at children’s.

it is very helpful to have another perspective,

especially from one
that is a specialist.

it seems so obvious that the better the pain is managed,

the better everything else seems to become.

functioning again in a normal capacity

actually becomes an option.

amazing.

the prescription for the new chemo (nexovar) will arrive today,

and so i’m sure conversations will be soon to follow about

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 wasn’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…”