Love Story – May/June 2006

A petite, Asian woman in a hospital gown draped with a starch white robe plays Love Story on the baby grand piano adjacent to the hospital’s automatic doors. A group of people—patients, their loved ones—recline in the sage green couches surrounding the baby grand; all eyes are on the pianist. She scrolls the keys as if she’s reading Braille, her face gently jutting to the music as if she’s in a trance. I’m in the lobby of MD Anderson Cancer Center waiting for the volunteer behind the information arc to issue me a password to log into MD Anderson’s internet. Tears are already forming in my eyes and I haven’t even made my way up to the 12th floor to see my mother. I was sure that I was stronger this time around, that I wouldn’t be the crying mess that I was when I was here in Houston at the hospital last week, but there’s a tragic sadness to this place that arrests me regardless of how in control I believe I may be. Love Story lingers like an overture. The pianist’s execution is eloquent and elevating so that if I close my eyes I can see the notes rise and fall, gliding across the lobby like figure skaters. When she finishes, she remains on the bench with her eyes closed and I wonder if that’s her way of practicing death—closing her eyes in broad daylight in a crowded lobby.

Everyone you encounter at MD Anderson Cancer Center either has cancer or is accompanying a loved one that does. Generally, the people you meet at your hotel in Houston’s medical district or on the shuttle bus from your hotel to the hospital ask a lot of questions, such as, is this your first time here?, what type of cancer?, how long have you been coming to Anderson? (which is the safe way of asking how long have you been able to live with your disease?). There is a camaraderie—a we’re-all-in-it-together mind-set, as if we’re all pledging the same sorority. MD Anderson is massive—there are clinics and testing areas and a hotel and library and gifts shops and Starbucks and a cafeteria as well as an in patient hospital; cul-de-sacs with comfy chairs and couches abound on each floor so that you can hide away and read or work or nap if any of those are an option. Each day at MD Anderson there are herds of new patients checking into the clinic on the eighth floor and I can’t help thinking that there’s an octopus quality to Anderson, as if the hospital’s tentacles are always reaching out and luring in fresh cancer victims.

On April 25th, it was confirmed that my mother had Acute Myelogenous Leukemia (AML), which is a fast-growing cancer of the blood and bone marrow. Her doctor in Boca Raton, FL, sent her to MD Anderson, what’s known to be the premier cancer center in the nation. She was accepted into a clinical trial—number 94 of 108—and admitted into Anderson on May 1st. She was put in a Protective Environment, or PE as it’s called around here—a germ-free environment that no one other than the nurses and docs in their space suits can enter. She was to stay there for roughly 30 days before she began the second phase of her treatment, which consists of monthly visits to MD Anderson, during which time she’d get to be an outpatient for the five or so days of her treatment. During her month in PE, she’d get mega doses of chemotherapy on a daily basis; this would basically destroy her immune system, which was why she needed to be secluded. My father and I would be allowed to sit in an adjoining room and see my mother through a rectangular glass window and communicate with her via an intercom system.

It’s now the end of May. For the past 27 days my mother has inhabited a room that’s roughly 15×12. She is not the type of person to sit still for more than a few hours at a time, if that. She is motion: walking, exercising, traveling, doing. She and my father are daily frequenters of antique auctions and flee markets; they eat dinner out each night. She is always ready to pick up and go, always ready to laugh. A “good time Charley” is what my dad calls her. Seeing her in one room is like watching a bird with clipped wings as he parades his perch. More than that, though, she is not the type of person I would envision with Leukemia; my mother is not a person I associate with any sickness for that matter. She dishes out smart aleck remarks, passes obnoxious comments about waiters in restaurants, and more often than not, she gets her way. In her down time, she and my father lounge around the pool up by their clubhouse each afternoon with their neighbors, enjoying this phase of life. That’s the outward her. The inward her that my father and I know is a very sensitive woman. Someone who listens to you, hears what you’re saying, then lowers her voice and speaks to you very matter of factly, her eyes intent on yours, gearing you in the right direction. She has a way of getting right to the heart of the matter and asking you questions that help you to get back on track—sometimes she’s soft and kind, other times she’s harsh, but always her sentiments match the situation.

In her “cell” as she calls it, my mother uses a makeshift toilet that consists of a handicapped raised toilet seat cover on the floor with a plastic bag wrapped around the edges to catch whatever she lets go. Running water breeds bacteria; thus, toilets or showers are not allowed in her protective environment. She uses a spray-in shampoo to clean her hair and washes her body around with towels, soap, and filtered water; she’s been instructed to use a fresh towel to wash each part of her body, so that each washing uses up about ten towels.

How did she get Leukemia seems to be a common question. I’ve learned from the doctors that no one knows for sure why a person gets Leukemia or most other cancers for that matter; they can speculate, but there’s no absolute reason, no scientific proof. My mother would have never known anything was wrong if she didn’t go for a routine check up during which time they did routine blood work.  Her platelet count came up low and then after some more tests in which her platelet count came up even lower, and a bone marrow test, within three weeks of her routine check up it was confirmed that she had Leukemia. No symptoms, no discomfort—she didn’t feel weak and tired, wasn’t bruising, no hemorrhaging except for an out-of-the-blue nose bleed. Basically, my mother was fine and then a few weeks later some tests told us that she wasn’t fine. It didn’t register with any of us. Some days it still doesn’t seem real to me, doesn’t seem possible. She was fine and then just like that, she wasn’t. Nothing had changed and yet everything had changed. I don’t think I believed my mother was sick until I went over their house one night after the initial diagnosis and felt the sickness in their home—a still, heavy air. In the days that followed, I heard the sickness in her voice when she joked with my father, telling him that if she were gone, all of the single women would start bringing him casseroles. There was a sadness, a loss, a sense of letting go in her jesting that wasn’t defeat, but knowing, acceptance.

It’s cold inside the hospital; so cold that often my hands and feet go numb. The nurses see my blue lips and offer me a blanket, telling me that the coldness is to kill germs and I know this, but I can’t help thinking that there’s more to the coldness—that the numbness on the outside instigates numbness on the inside, which makes it easier for all involved.

This waiting game that cancer is has become a tunnel that I’m walking through, only I don’t see a way out; there is no light peeking through, guiding me. There is no darkness, either, just a sense of being. I find myself gasping for air every now and then, as if I’m going under water, plunging deeper and deeper. Knowing that someone you love is going to die makes you feel powerless. And yet I know, I understand, that we’re all going to die one day, that the end of life as we know it is inevitable and so I’m surprised at how I’m reacting to this situation—the resistance that I’m facing. I try to see what’s going on with my mother from the yogi mindset that I’ve grown into over the last decade—to surrender to the situation, to accept it, remember that we are all on our own path and that this is the path my mother must follow. That there is no good or bad in life, just life and our only job is to be present and to live each moment of our lives, to breathe the moments in and let them go. I know all of this, and still, I’m sad and feel powerless and sometimes anger enters into it, too, although I don’t know who or what I’m angry at. The thing that we forget more often or not when everyone in our lives is healthy is that our time here, together, now, is gift, not a given. The thing we forget when everything in our lives is okay is that in a moment, it can all change. I know that I will get to the other side of this—that I’ll move past the pity and sadness and defeat—that it’s my job in life to keep going, and yet I wish that I could just lie down and close my eyes and if only for ten minutes or an hour, forget that this is real, enter another reality.

Even in her sickness cell, my mother makes me laugh. She says the things that I may think, but never say. She is unpredictable at best; when I asked her if there was anything that she needed me to bring down from Florida this time when I came to visit, she said: “I’d like a wide white belt. You know, with rhinestones on it or something.” I paused and said, “Okay, sure,” not really knowing why she needed it just then while she was in the hospital, or where I was going to get it. With a few hours before I had to head to the airport to head to Houston to see her and keep my father company, I drove around Boca Raton, pulling into strip malls, in search of the item, and I did find a wide white leather belt full of rhinestones, just as she ordered. Right now, listening to my mother through the intercom system as she interacts with one of the nurses, I pause to make sure I’ve heard her correctly. When the nurse leaves I ask: “Did you just ask her to find someone to polish your toenails?” “I could use a good pedicure is her response.” She’s being serious. “I’m sure they could send someone up from a salon,” she says. No one except for the doctors or nurses in their contamination gear is allowed in the room—my father and I aren’t even allowed in the same room as her.  “You’re mother thinks everyone is here to wait on her,” my father says. He smiles. “You should see her with the nurses she doesn’t like,” he says. “This one poor little guy shakes from her.” I ask why he shakes and she chimes in, “Oh, I don’t like that little guy.” She goes on to explain how he’s the only one who turns on all the lights when he comes into her room at 4:00 am to draw blood. “Everyone else puts on the bed-board light, but him. He has to turn on all the lights.” I point out that maybe he needs them on to see. “Oh come on,” she says. “He should get glasses if he can’t see.”

My emotions are a salad of sorrow and hope and hopelessness and peace and wishing. I never know what I’m going to get on my fork each time I dig in. Some moments putting one foot in front of the other to walk baffles me: movement seems like something reserved for other people. Everything in my life is the same, but different. For one thing, I still speak to my mother on the phone a few times a day, whether or not I’m here in Houston visiting her at the hospital. The difference is that she cries a lot during these phone calls. We’ll be discussing something or other, laughing a bit, and then the next thing I know there’ll be silence on the line and I’ll hear her sobbing. I know why she’s crying: because of nothing and everything. Because life is sometimes unfair; because she feels sorry for my father and for me; because she hates inconveniencing us; because there is a whole world going on outside and she’s not a part of it right now; because she got sick and all she wanted to do, more than anything, was live her life, laugh, have a good time.

When I’m down in the lounge on the second floor, what’s called The Park, I’m fascinated by all the people who walk around in their hospital gowns, using their intravenous carts as canes. Most of them are in the midst of losing or have already lost a considerable amount of their hair. Some walk and look around, and I imagine that they’re exercising, or just trying to stay connected to life in some way; others walk around with a family member, not really talking, but being together, and what comes to me is that it’s easy for us all—families, friends—to celebrate together, laugh. But when it comes to suffering, it seems that we suffer alone. When I’m in Houston with my dad, we speak a few hours a day, and I want so badly to be there for him, to love him and comfort him, but the truth is that I don’t know what he’s really thinking or feeling; I don’t know what thoughts are going through his heart or mind or soul. I don’t know what to say or do. The same goes for my mom: I talk to her about daily things—the weather, where my father and I went for dinner the previous night, what she ate for breakfast. I ask her how she feels, and she says okay. There’s an emptiness to our words, a mindlessness. And I don’t know what it is that I really want to say to her, what I should be saying. After a while, telling her that I love her, that I’m so sad about this all seems beside the fact. I’m fortunate to have some great friends to reach out to, and yet more often than not, I don’t these days. I don’t want to be morbid; I don’t want to ramble on about my mother and the brevity of life; we all know these truths without having to discuss them. This experience has reminded me that it’s so hard to articulate what I’m feeling. And what I’m feeling changes moment to moment: desperation, love, peace, confusion, fear, isolation. I don’t know what you’re supposed to talk about when your heart is in the midst of breaking, when your faith hits a low point.

I’m trying to come up with a beginning, a middle, and an end to this story, only I’m not sure where the story begins: with the fact that she was diagnosed with Leukemia a month ago or the first time I realized what it meant to have a mother to reach out to, way back when I was in sleep away camp and I experienced fleeting homesickness, or if it begins with my realization that my mother is not going to be in my life, in the flesh, forever.

My father takes pleasure in the simple things. Each morning he takes a box of cereal from breakfast buffet back to the hotel room to feed the two squirrels who frequent his hotel room’s patio. He takes a roll to feed the birds—miniature red and blue birds. There is a simplicity to my father that can be misjudged. He’s content with so little: seeing my mother through the glass window; a cup of soup; a piece of fruit; a roll with butter, closing his eyes and resting. He never complains, doesn’t blame anyone for anything, and regardless of what is, he endures.  People ask him how he is, and he says, “Fine, doing okay.” He is ready and willing to do anything that’s asked of him, whether it’s attend Leukemia support group meetings, or take classes on how to change the dressing of my mother’s intravenous catheter. Observing my father, experiencing him, I marvel at his strength, his calmness, his balance.

I know that I will never miss Houston or MD Anderson Center. I think this while I jog through the hotel parking lot and then down Kirby Drive in the early morning. It’s still outside, sunrise yet a promise; large black birds fly solo across the great expanse of whitish-blue sky, their wings spread wide, as if they are stretching. My body still sluggish with sleep, I trudge past Reliant Stadium’s West Club, past the underpasses that connect the various parking lots of the Astrodome, past the strip mall with its mega-sized stores—Office Depot, Fiesta, Payless. My breath is unreliable until self consciousness dissipates and I become the movement, my feet pounding pavement, the rhythm keeping me going. Once I begin to sweat, everything always seems to make more sense to me; sweating helps me to feel—my body, the way the air engulfs me, my skin. I run harder and faster, cruising past intersections, racing against myself, against life, against everything that tries to slow me down. I say my daily prayers, thanking the powers that be for all that is, for this new day, for the chance to be here with my mother and father, for all the people who are helping my mother, for everyone I know and love. I breathe it all in, life, and let it go. I coast down Main Street, past the long-stay hotels, past the strip of hospitals before I loop around and head back, my feet leading the way. The sun, newly risen, beats down on me so that my head feels as if it’s close to a fire. Soon I’ll be back at the hotel, a better version of me, more alive, softer, less restless, more emotionally prepared for our day at the hospital.

While I won’t miss Houston or MD Anderson, there are things about it that I’ll remember:  the nurses who kept my mom company in her room when we couldn’t; their chats with her about nail polish and make up and hair and clothes and daily news events. I admired their grace, their compassion. All the days they kept her going and the love they showed her; I understand now that caring for a stranger is love. I’ll remember the afternoon, just a few days back, when she decided, in her very matter of fact but loving way, to tell one of the nurses that she needed a makeover. “Don’t take this the wrong way,” she said, “but you need to get rid of your glasses.” “My glasses?” the nurse said. “They’re very 1980ish. No one wears glasses like that anymore,” my mom said.  My father and I scolded her, told her to behave. “Tomorrow I’ll tell her that she’s going to have to straighten her hair. That frizz doesn’t sit right on her,” was my mom’s answer.

Today, my mother found out that she is going to be let out of the jail cell she’s resided in for 28 days. The previous afternoon we had received bad news—her platelet count was still threateningly low, along with her white blood cell count and hemoglobin; they had to give her yet another blood transfusion. Day number 27had been a rough day—according to her doctor, things weren’t going according to plan; she was going to need to remain in the hospital for another 7-10 days.  So the news of her release came as a shock to all of us. A wonderful, pleasant, shattering shock. Overnight, apparently, her body had jump started and her numbers were on the rise. Her 27th day into treatment my mother was going to have to stay longer, and then on her 28th day, we learned she was going to be released in 24 hours. When the doctor went into her room, she asked him if it was true—if she was going to be as free as Martha Stewart tomorrow, and he told her that it was true, as long as her numbers continued to rise.  Beyond her shenanigans while she was in room 1260 in the PE ward, beyond her tears and her moods, my mother was able to find humor, to be humorous, even during the days that she may have struggled with the injustices of life.

It’s the thought, as selfish as it is, that no one will ever love me the way my mother loves me that makes me cry when I’m alone. But there’s another truth to it: I’ll never love anyone the way that I love my mom. I love her with total acceptance; I love her unconditionally. When we bicker as mother’s and daughters do, the moment I realize that she’s upset, I’m ready to do anything I can to let her “win”; I can never go to sleep at night unless everything is okay between my mother and I. It’s important to me that she knows how much she means to me. She has never let me down, never deserted me, and always had time to talk to me and I aspire to be that person to her, although I’m sure that I may not always live up to it. She’s the person I call when it comes to the simplest decisions in my life: what should I eat for dinner? As well as the person I go to when I have life decisions to make: should I move? She is the voice I hear when any decision to be made comes up in my life.  All through college she would call my roommates and I each day with the weather report; she called me at my office in NYC everyday to fill me in on whatever it was she had to fill me in on—what she had to do that day, what so and so said; and when she won awards at the hospital where she worked as a patient liaison, she gave them to me. One of the hardest things in her life was the loss of her own mother who passed away at 68 years old. I never forgot how hard that loss was for her, is for her. If it were up to me, my mother would never leave this world. In my logical mind I know that there will be a day when I can’t pick up the phone and call her; yet, my spiritual self knows another truth: even when she’s not here in the flesh, she’ll be with me always. My relationship with my mother is a love story.

Sometimes stories aren’t chronological; sometimes living is all over the place and we put pieces of the puzzle of our lives in place as we find them, aspiring perhaps to complete the picture one day so that we can see what all the pieces add up to.  But maybe whether or not we get to see the picture doesn’t really matter as much as finding the pieces—and we do find them, but usually only after we stop looking for them.

After thirty days, my mother’s doctor tells her that she’s in an initial phase of remission. He hugs her and there are tears in her eyes. She’s a success story at this early stage of treatment. She still has a long road ahead—a second phase of treatment, learning how to self administer daily injections of cancer treatment, many more visits to MD Anderson, but for some reason, I believe that it won’t ever be as difficult as it was this past month. As human beings, we learn to accept, adapt. We learn how to survive and keep going. It doesn’t seem possible sometimes, but we do. Each night when we returned to our hotel after our day at the hospital the woman behind the front desk asked: “And how was your day?” It was hard work to smile after each day at the hospital; I needed some time, space, to recover, get my spirits back. “Okay,” I’d say. “Okay,” my father said. She’d smile at us real big and wide and say: “God didn’t make no bad days, so they’re all okay.”  I’m trying to remember that.

 

 

 

 

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