Decisions

Sitting in the oncology exam room, Ben shifts in his body in the small chair trying to get comfortable “So, what do you think the doctor is going to say today?” I ask him quietly trying to break the silence.

“How the hell would I know, Madge?” squirming in his chair. Sounding annoyed he lets out a big breath, “I just want to know how many days I got left.”

“What? That’s crazy, Ben. He’s not going to tell you that. You’ve got more than days left for Pete’s sake.” Lately he has been saying inappropriate things and I brush this one off, too.

Ben looked at me and waves his hand toward the door. “Go see why it’s taking so long, will ya?”

“Good grief, Ben, why? I think–.”

Dr. O’Hara walked in. He shook Ben’s hand and smiled at me. “So, Mr. Johnson, how have you been feeling?”

Ben presses back against his chair, crosses his arms and looks at the floor. “How should I feel, doc? Last time I was here you gave me a death sentence. I’m going to die, just tell me how long I’ve got. That’s all I want to hear.” He scratches his head and adjusts his glasses.

Dr. O’Hara gives a faint laugh as if Ben is joking. “I’ve got the results of your scans and biopsies. Let me explain them to you and we’ll talk about what comes next.”

“Whatever.” Ben’s right leg starts to bounce up and down slightly. He let out a big sigh and nervously lifted his baseball cap off his head and placed it back on his head two times, with a tug at the bill twice.

Dr. O’Hara explained that Ben has a large tumor in his brain and that it is cancerous. He showed us the scans of the rest of his body which showed he had lesions in the liver and pancreas. The results were not good. Ben didn’t seem to be listening and made no attempt to look at the scans. The more Dr. O’Hara said, the larger the lump grew in my throat. I heard the words “stage IV” and “metastatic”, “aggressive” and “not curable.”  I searched Ben’s face for some clue to what he must be thinking. When our eyes met I saw his eyes tear up and one lone tear let loose down his cheek.

When I first met Ben it was love at first sight. I was too starry-eyed to notice how Ben avoided public displays of affection, didn’t like to hold hands, hug or sit close together plus he didn’t like to dance – all of the things I thought part of a normal dating relationship. I expected all men to be just like my father – the protector, provider, and fixer of everything; and like my brother – sociable, funny, hard worker, and life of the party. Ben turned out to be none of these things. I always felt that eventually Ben would change. Having Sabrina, our daughter, was a dream come true until I had to work 2 and 3 jobs sometimes to make ends meet when Ben didn’t have a job. I wore my Big Girl panties more times than I wanted in our married life and eventually grew tired of making excuses for his behavior. I was the mother and the father and had to do absolutely everything. I felt embarrassed, let down, and depressed the farther away we got as a couple. Looking at him now, so sad and helpless, I wish I could hug him and tell him that I still love him.

Dr. O’Hara swings in his stool to face Ben. Quietly he says, “There are treatments to help survival but unfortunately not to cure your cancer.” He looks at me sympathetically. “I have seen different chemotherapy regimens work. Most patients tolerate this type of chemotherapy very –…“

Cutting him off, Ben said, “I don’t want any treatment,” staring into his hands.

I swung myself around in my chair to look at Ben, shocked, “What?” You can’t possibly mean that. Listen to what the doc is saying, Ben. There is treatment for this cancer.” Tears dripped in my purse as I searched for a Kleenex.

Ben looks squarely at the doctor then, “Listen, doc. I. Do. Not. Want. Any. Treatment. End of story.” Dr. O’Hara looked at me raising an eyebrow.

“Why do you want to just give up?” choking back a sob. Ben turns quickly to me, squeezes my arm and says “quit crying Madge” through clenched teeth. Ben looks back and asks Dr. O’Hara again how long he has, still squeezing me arm a little too hard.

Dr. O’Hara shuts his laptop, “Based on how much the cancer has already spread, my guess would be 6 months if you decide to have no treatment.”

Ben slowly gets up, “Thank you for being honest, doc,” and he leaves the room.

“This is a shock for both of you”, Dr. O’Hara said to me as the door closed behind Ben. “It will take time for both of you to process all of this. After he thinks it over, hopefully he will change his mind. This doesn’t have to be a 6 month death sentence for him.”

Outside I see Ben leaning against our car. I hit the key to unlock the door and he slides into the passenger seat. I start the car and head home. Neither one of us says a thing. He leans his head back on the head rest and closes his eyes. For the rest of the day, we avoid passing each other in the house. Later lying in bed, back to back, not touching, neither of us able to sleep he says, “I’ve made a decision.” I wait holding my breath for his next words.  “I don’t want treatment. I don’t want Sabrina to know I have cancer. And when things get bad enough I want you to help put me out of my misery. Can you promise me that?”

It has been a week since seeing Dr. O’Hara. Ben remains adamant about not wanting treatment and finally told me it was more about money than any other reason. He knew insurance would not cover all of the treatment and if it didn’t work, he didn’t want to leave me with a lot of medical bills. What I heard from his words was that he didn’t deserve to be treated, he wasn’t worth the money it would cost. We had discussions about living wills and funerals and he refused to make any plan. He has always been an agnostic while my strong Christian faith cannot imagine a death without some sort of service. He wanted me to promise there would be no funeral. He said no one would come anyway.  He wanted to be cremated and wanted his ashes thrown in Lake Superior up by our favorite place in Grand Marais. When I asked him to write his wishes down in a living will, he told me he didn’t have to because “I knew what he wanted.”

I see Ben from the kitchen window, standing in the garage. He is leaning against his workbench looking at all the items I have placed there over the winter months probably chastising me for not putting them away where they belong. He has always kept the garage organized, as well as his books in his office and his cherished stamp collection. I watch as he turns to stare at the wall where all of our Christmas decorations are kept. I know what he is thinking. He thinks I don’t need all that stuff for our small townhouse. He thinks it is junk and that a lot of it could be thrown away. But he knows better than to ask me to weed it out or get rid of anything. Not now. His tall, lean body moves slowly towards the car, bent slightly forward from the shoulders, his right hand on his hip as if he is holding the bones together as he walks.  He leans his back against the car.  A ray of sunshine settles across his face. I see him quickly touch his eye and then pinch his nose. He is crying. Feeling bad that I am spying on him, I consider going out to hug him and telling him everything is going to be alright.

“Geeze!” I jump as I am caught off guard from the loud ring of my phone in my pocket. I look at the caller and see that it’s Sabrina.

“Hi, how are you Sabrina?”

“Fine, mom” she sighs, taking what I can tell is a drag off of her cigarette. I imagine her sitting on her sunny porch, a coffee mug steaming next to the pack of Camels.

“What’s up?” I ask, knowing I would never be told what’s really happening in her life; it’s just what I say when she calls.

I can hear her blow the smoke from her lungs. Sounding congested from her allergies, Sabrina sniffles and asks “Mom, how is dad doing?” I still haven’t told her anything about the cancer, but she has been around lately when Ben was not acting himself. She is concerned.

I’m about to tell her he’s out in the garage, but when I turn around he’s gone. The car is not there.  My heart skips a beat at the thought of Ben driving. He was told not to. “Mom, is everything okay?”

I tell Sabrina that everything is fine. I tell her not to worry.

“Why can’t they figure out why he is acting so weird? Why doesn’t he see a different doctor?” Sarah asks blowing her nose into the phone.

“He doesn’t want to see any more doctors, Sabrina. He says he feels fine. I keep trying but you know how stubborn he is.”

“He’s so stupid,” Sabrina spits out.

“You know how he gets when it involves doctors and money.”

“Ugh, I know that whole thing word for word unfortunately,” Sabrina sighs. “But seriously, mom, what are you going to do?”

The question hit a nerve and I felt slightly dizzy. “How about if I call you later, honey? Okay? Love you,” I said as my eyes filled with water and I ended the call.

I sat alone in quiet living room and recalled Ben’s long-winded discussions he would get going with anyone who would listen about our medical system, politics and religion, too. Being agnostic he can’t understand how I could believe in a God who allows babies to die and people to suffer. He feels it is unfair that he should go to hell after being a nice person his whole life. He is angry with God and expects me to be angry with him, too. He will never listen to my reasons for believing.  Ben has dealt with undiagnosed depression most of our marriage, stemming from low self-esteem and feeling his future was robbed from him by his overbearing alcoholic father. His worst depression started after being laid off his job during the housing crash and then he became disabled from his diabetes. His days now include watching C-SPAN, political shows and right wing news shows that cause him to be argumentative, irrational and cynical. Sometimes when I’ve heard enough I sit in the bathroom and cry. Thankfully he won’t follow me into the bathroom.

“God damn door!!” My daydream ended as Ben tried to open the front door. He fumbles with his keys and I hear them fall to the ground. There is audible groaning as he bends slowly to retrieve them. Finally, the door is open and he walks in with his arms full of grocery bags. A free hand holds his tall plastic Holiday cup by the lip, the newspaper and the mail. He refuses to take two trips from the car. He is a creature of habit. He has to have 6 ice cubes in his tall plastic cup. He opens a new can of diet orange soda and pours it slowly into his cup, tapping the side of the can exactly 8 times. Then he shakes the empty can over the sink 5 times leaving the empty cans to pile up on the counter. He comes slowly to the living room now carrying his plastic cup and the paper, his jeans hanging loosely over his slim pelvic bones, his polyester golf shirt half tucked in and half out. He has lost at least 20 pounds since we saw Dr. O’Hara and his balance seems to be getting worse. He backs into his wing back chair, landing with a thud, sending the chair sliding back into the corner. His orange pop spills onto his shirt but he makes no gesture to wipe it off. He sets his cup down and turns on the TV. He lifts his baseball cap a little off his head and then puts it back on, tugs the bill of the cap two times. He sighs loudly and says with disgust like so many times before, “you will not believe what happened on that little trip to the store.” Somehow there is always a story about what happened while he was out. Whether its crazy drivers, parking space wars, the checkout line that takes forever or the cost of something he buys that never registers at the correct price – somehow he always runs into a problem that makes him angry. I wait for him to tell me what happened but when I look up from my Iphone he is quiet.  He’s sitting erect in his chair, his long legs stretched out in front of him. Obviously tired he has already fallen asleep in his chair, his chin dropping to his chest. The paper he was holding drops quietly to the floor. I stare at him for a few minutes making sure his chest is moving up and down. He is so still and quiet. My heart twinges with a little pinch of pain as I recall the doctor saying that his brain tumor could take him quickly at any time. Watching his peacefulness now, I am wishing that he would go silently when the time comes.

Sabrina came over a couple of days later. She went to the living room to say hi to Ben. She flopped on the couch with her knees under her body and said, “Hey, dad, how’s it going” a little too cheerfully, sounding forced. Their relationship since she was a teenage has been strained, Sabrina having been disrespectful and rude to Ben most of that time. Ben, rather than confront her, would walk on egg shells whenever she was around. He had no response for her cutting words and rolling eyes. She hurt him the most, however, when she secretly married and took away his chance to be the father of the bride to his only child. Only I knew how much that hurt him because it hurt me, too. Lately she has been trying to reconcile with him. Maybe being married has caused her to see things differently. As much as she wanted to deny it, she and her dad were two peas in a pod in their stubbornness and independence. Every day I wanted to call and tell her about his cancer but I did what Ben asked. Now I hear them talking about the Twins baseball team and the humid weather. He says nothing about his cancer.

“So how are you feeling?” she asks Ben, “have you been to the doctor recently? It looks like you’re losing weight, dad. Are you okay?”

“I’m fine, Bri.” That was all it took for him to start a long-winded rant about our medical system, how they are stealing our money, killing people who don’t have insurance, and how drug companies should be blown up for making us guinea pigs while they rake in billions of dollars. Sabrina has heard it all before… many, many times. We both have. The only opinion you can have in this house is Ben’s.

When Ben got up to use the bathroom, Sabrina came out to the kitchen where I was making coffee. “Dad doesn’t look so good.” Without looking at her, I pour three cups and follow her back into the living room. “I know,” I said. I had decided that since Sabrina was here we should tell her about Ben’s cancer today.

Ben came back and sat down. I gave him his coffee cup. Not sure how to bring it up, I blurted out, “Sabrina, we have something to tell you.” Ben’s eyes shot daggers at me and I looked into my coffee cup hoping and praying that Ben would take my lead and tell his daughter the truth. The room was silent, the kitchen clock.. tick, tock, tick, tock. I could hear the traffic on the street outside. I looked at Ben again. “Ben, please. She needs to know.” Sabrina looked from me to Ben and back again. She shifted her legs on the sofa. “Tell me what?” Ben is staring at me now. I take a sip of my coffee. I reach for Sabrina’s hand and tell her that her father has incurable brain cancer and has only a short time to live. Sabrina takes her hand from mine and stands up slowly. “What? How long have you guys known this? What about treatment? Can’t you get chemo or something, dad? No.  No, this can’t be happening now.” Sabrina moves towards Ben and collapses at his feet. I am just about to tell her that Ben doesn’t want any treatment, when he starts to stroke her long hair. I am so struck by this poignant scene between father and daughter, I cannot speak.  Sabrina starts to cry and takes her father’s hand. “Oh, daddy, I’m so sorry. But I have something to tell you guys, too.”  She wipes her eyes and tells us that she is pregnant; that she is due in 7 months, around Ben’s 60th birthday. I’m wondering if I heard Sabrina right. My elation at the news of our first grandchild is mixed with the sadness that we could lose Ben before the baby is even born. This news is so unexpected but such great news. Sabrina continues to weep as Ben looks at me. I search his eyes hoping to see a change of heart, a new perspective, a reason for him to fight for his life. In the next moment we are all on our feet caught in an embrace full of sorrow, joy and hope.

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