We stood there. We held on. We let go. We said goodbye.
…
“Hey, babe.”
“Hey you. It’s late.”
“I know. I know. I wanted to call… I have something I need to tell you.”
“Are you okay? Is everything okay?”
“Yeah.” I forgot the words that were in my heart. I wanted to say so much. I wanted to confess everything. “I just wanted to say I miss you. I can’t wait to come home.”
“I can’t wait for you to be home…”
“Okay, go back to bed you sound so sleepy. I love you.”
“I love you more. Goodnight, you.”
chapter forty-three
no song attached
It all moves so fast eventually, life. For a long time, you wake up to catch the school bus and everything is the same for what feels like a lifetime. It’s all the same and then one day you wake and everything is different.
When I got home, I saw the passage of time in the weight you lost, the dark splotches around your eyes, the now jutting cheekbones, the wrinkles gained and the slowness in your pace. Only three days had passed and I could physically see your body’s decline.
My mother witnessed it, too. “Does his mother know her son is dying?”
I didn’t know how to answer the “dying” question. My mom changed the topic by listing what was in the fridge for dinner. “Spinach and some chicken,” she sniffled, holding back tears. She stayed and helped for two more weeks, in time for your mother to arrive for another big test result. In between the change of motherly shifts, we had two nights alone together. Just the two of us, and I was grateful.
…
We made love the night my mom left. Strange that I remember that, but I do. We loved as if it was our first time or our last. We were relaxed on the couch in the comfort of our home, our cozy little home, in the cozy little life we had created together. The life we created for each other. I undressed you slowly, button by button, then tenderly peeled off my own layers. Your movements were timid and weak, unsure of what move to make next. I took the lead, straddled your lap. Your body feeling frail between my thighs, your hold feeble. My hands took hold of your face, my eyes lost in looks as I guided my body over yours gradually, wanting this moment to last as long as possible.
We kissed gently — our breath touched before our lips did. We never closed our eyes, not once. Even in the pleasure we didn’t close our eyes, afraid we might miss a minute. That’s the way I remember you best, your eyes two inches from mine, your smile blurry. Staring at one another, breathing, knowing without saying, feeling without believing, that our love could last forever. We become one, transfixed, staring contently through a soft moan. I began to cry. My life was right there. Right then and right there nothing else mattered. We understood each other perfectly. We were home.
…
Whenever you would get test results of how your cancer was progressing, your mother would fly into town full of energy and optimism. I’m not gonna lie — her energy was absolutely exhausting. I was thankful, though, too. I could handle your day-to-day calorie counting, pain medications, appointment scheduling, and hand-holding during chemo. Test results were foreign. A language I did not speak. Cancer markers, liver functions, PET, CAT scans. I had no idea what it all meant. When your mother or stepfather came, I felt like a pool shark. You couldn’t sink the eight ball, but I knew your mother could. She’d ask the appropriate follow-up questions. We’d win the game.
…
The three of us sat in the waiting room. Your mother typically read a medical journal or medical charts, catching up on her own work. She always wore her game face to the hospital. You and I leaned on each other, held hands, and gossiped about other patients, forever thankful you didn’t look “that” sick.
“Anthony Glass?”
We knew the test result routine as we followed Taline into the exam room. I was eager to see if the new chemo was working. Surely this time. Taline gave us all a blank stare as we sat in our usual seats, you on the exam table. Her face held tight, holding back the results. She smiled at you, then turned her voice stern. She described the results in medical jargon to your mother. It could have been Italian or Morse Code. I nodded as if I understood her beeps and ticks. You did, too.
She talked for a long while, and you and I continued our nodding. It must have been our naive grins. She repeated herself, this time in basic English.
“Your cancer has spread significantly in your lungs, lymph nodes, bones and now liver. At this time treatment options are more about palliative care, and less of a cure.”
Taline’s words were simple, concise and sharp. Black and white. Life and death.
…
I used to have this dream. It was more a nightmare. What made the dream most terrifying, what made childhood nights most terrifying, was that it was a recurring dream and I never knew if that night would be the night I had it again.
Describing the nightmare is hard because there are no objects, but only abstract movements associated by feelings mixed with two basic colors: black and white. Jumpy shapes shifting and changing. Now imagine you are standing in static as it envelops your body. It becomes your mind and vision. You become the static. This is where the dream starts and ends, between the movements of black and white, they dance and sway, pair and separate. Static so defined and harsh it terrified me awake, in tears. I would run to my mother’s arms for rescue and tell her tales of “TV snow,” describing my fears. She never understood my description of the dream and could only console my reactions. “It’s gonna be okay dear. Today is a new day.”
…
I stood there staring at Taline, then at your mother, her face still composed. I felt the black and white motion turning sharp and jagged. Cancer wasn’t going away. It wasn’t getting better. After Taline left the room your mother and I followed her into the hallway.
“How much time do we have?”
Your mother asked straightforward questions. I liked that about her. She always asked the questions I didn’t dare voice.
Taline, choked with tears, applied her game face. Her eyes gave us the news before her words. Static motion filling the space and holes. We all understood the black and white of it. Your mother and I went to see you sitting motionless in the exam room, dazed, simply staring ahead. We said nothing, hugging you at the same time, a three-ringed hug all of us forehead to forehead forming a circle. Surrounding you with as much love as we possibly could. We felt great loss before it was even lost. Felt the black and white of it.
From: [email protected]
To: friends
Sent: Tuesday, June 13, 8:07 a.m.
Subject: hard e-mail
this is a hard e-mail to read
and it’s an even harder e-mail to write.
in fact, it shouldn’t even be written.
it should be a series of phone calls.
but if that were the case, it would be that much harder.
as many of you know, chas, my mother, and i went
to USC yesterday to get the results of my latest CT scan.
seeing as i have felt increasingly shitty the last few weeks,
it wasn’t a surprise to find out the news was bad.
the surprise came in just how bad the news was:
the chemo regimen i have been on didn’t work,
as the established cancer cells have grown significantly.
they have also spread dramatically throughout my body.
we’re preparing to start a new combination
of experimental therapy,
but the strategy now
is more along the lines of extending the fight,
rather than expecting a recovery.
they told me “months.”
“maybe a year.”
and so, an e-mail.
after some time to think, to process and plan,
i hope to speak with each of you,
whether that be in person or on
the phone.
until then, know that i am finding my peace,
and that as my friends and family,
you are all a part of it.
love,
a.
…
When my mom asked me if your mother knew “her son is dying,” I didn’t know what to say.
“Mom, he’s not going to die.”
“Chas, what do you think will happen?”
Hell, I don’t know what I thought would happen. I didn’t think you would get cancer. I didn’t think it would come back, nasty and aggressive, or that at age thirty-one, a person would have to fight for his life against a disease. I didn’t think a tumor could grow to the size of a grapefruit on your shoulder, a physical reminder of the cancer inside you. I thought doctors and surgeons and medications and chemo were cures. Now, all I could think was, “What if I’m not cut out for this? What if I can’t do this alone.? What if I’m no longer patient enough or stupid enough to deal with this? To deal with watching you die?”
There, I said it. Watch you die. That’s what I was doing. Right? Watching. Waiting. I’ve heard dying isn’t easy. That our bodies were built to stay alive with strong heartbeats and keen senses and impeccable immune systems. When the body starts to fail… I’m sorry, I knew you were mad at me. I didn’t mean to be scared, but good God, we were given a deadline.
How would God let something like this happen? I prayed almost every day. At first it was to heal you, kill your cancer. When that didn’t work, I thought I was being too demanding. So I asked God for the comfort and strength to get through this. Maybe it was a selfish prayer, but it was small enough — yet not once did He answer. I felt completely abandoned. It’s a lie, I decided. A barefaced, bullshit lie: God doesn’t answer prayers, because there is no God.
I wanted a life with you. A long, happy, boring life — not “maybe” a year. I kept telling myself there was a chance, miracles do happen. I’d be stupid if I gave up on something as important as love. Yet, watching you sleep, I couldn’t think of anything else but that I missed you. You were next to me, holding me, but I missed you. I missed watching subtitled movies with you, I missed laughing with you, I missed your cold feet finding mine in the night. I missed your eyes on me in the morning. Your smile before you opened them. You were right there, right then and all I could think about was how much I missed you.
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 29th and then July 13th. Brothers + friends arrive on 15th. That would mean Maine sometime in between June 30th and July 12th. 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 7th through the 15th… 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 22nd
July 6th
July 13th.
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 recto
r 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
Even if I Am Page 22