I knew my body would be assaulted by chemotherapy during my transplant, but I was determined to keep my spirit hardy. I wasn’t afraid of being isolated; after all, hadn’t I practiced being solitary on retreats? I was comfortable with quiet and the idea of staying in a sealed room (to protect me from infection) didn’t bother me, although it was important for my spirit to have windows and light. Fortunately, the corner room in the hospital, with two large windows, was avail-able. The bed in it faced the west, with a beautiful view of the historic state hospital that stood like a castle high on a hillside surrounded by greenery.
The transplant unit was on the eighth floor, the top floor of the hospital. If I looked diagonally across and down from my room, I could see the Stress Reduction Clinic’s classroom. I was told later that everyone in the classes used to look up at my window and send me Metta, wishing me to be safe and protected, happy, healthy and at ease.
The room itself was bare, except for a stationary bike on one end, an outlet for a PC, and high tech equipment for my infusions of chemotherapy and stem cells. There was also a small surveillance camera mounted on the ceiling and pointed at the bed. Nearby a TV/VCR was bolted to the wall.
I had read that it was very important to make the environment comfortable and supportive of healing, so I arrived on the unit wheeling a cart borrowed from pediatrics loaded with “stuff.” It included a large framed poster, The Fauve Landscape, that my father had given me years ago, a picture of brightly colored boats moored by the promenade of a fishing village in southern France. It was bright and cheerful. I put it on the floor across from the bed where I could see it. It was painted in vivid blues and greens, oranges and gold, and seemed to shout, “Live, enjoy!” Looking at it, I could feel the verve and life of the scene, a counterbalance to the sterility of the room.
I also brought along the colored pencils I had carried with me to chemotherapy sessions, waiting rooms and my preparatory hospitalization. I had a selection of CDs, earphones, my computer, books, (inspirational ones on meditation, as well as mysteries and science fiction), cards, as well as videos of musicals that a friend had collected and given me to watch. In addition, I had the woven hair of all of my friends from the healing ceremony. I don’t think the nurses or doctors had ever seen anything like this.
My perspective was, “I’ll get through this.” I did not think about death. I focused on being in the moment. Again and again, I remember saying to myself, “This is it. This is what is happening. This moment counts as much as the moments when I am physically healthy and active.”
I knew I had to put aside my doubts and stay present with my experience in order to get through it. Now I understood the importance of staying put on one’s cushion and deepening the ability to be steady, simply observing the show of mind states, feelings and bodily sensations coming and going. I hoped the experience wouldn’t be too bad and I had faith that I’d survive.
“Everything passes,” I told myself. “This, too, shall pass.” And it was wonderfully helpful to gaze out at the sky. It seemed so big and endless and I so small. It helped put my pain and my concerns in perspective.
I only have selected memories of my time on the unit: the warmth and care of the nurses; David’s visits, often spent reading to me; the joy of sucking on an orange popsicle, its cold soothing the sores that lined the inside of my mouth and prevented me from speaking or eating. I remember the warmth and care of people rather than the pain. I remember thinking that even if I were to die, life would continue, babies would be born, children would still laugh and seasons would arrive and go. It was reassuring to hear the sounds of children below my window and outside in the corridor and enjoy the spontaneity of their voices.
With the exception of the first and last couple of days, I was too sick to read, listen to music, or watch TV. My concentration was very short. I spent much of my time looking out the window, finding solace in the sky, watching it change color and observing the clouds. It was absorbing to watch the different formations and watch them float away. I insisted on keeping the blinds up in the room. The sunlight gave hope and its vastness soothed me.
This was especially important when I had pneumonia. Only now, as I write, can I begin to comprehend the fragility of my life during that period. Dr. Becker told me that never in her experience had she seen a person who was as seriously ill as I was, breathing with such difficulty, and receiving the maximum amount of oxygen possible, through a tube in my nose and a mask over my mouth, yet able to hold on without going on a respirator. I believe that is when I had David read me The Little Engine that Could.
“You’re strong,” Dr. Becker said. “A real stoic.”
During this time I was hooked up to machines, dependent on oxygen for breath; I could not struggle. I didn’t have the energy. It didn’t make sense. All of heart, mind, body, will and me were directed toward survival. I remember Kamala Masters, a meditation teacher, and Franz Moeckl, who taught Qi Gong, coming to the room. I had studied with each of them. When they came, I couldn’t talk. My mouth was filled with sores from the chemotherapy. My face was covered with an oxygen mask. The nurses and doctors were fearful that I might not survive.
I remember them entering the room, gazing at me, recognizing my stillness and simply sitting down. It seemed they brought peace with them. They were not afraid. They felt no need to talk to me, cheer me up, or give me anything material. Instead, they sat and meditated. Kamala tells me, now, that she repeated Metta again and again, sending me wishes of love, of health, of safety from harm and of ease of being. Even without words, I felt these wishes and was able to go to sleep. I surrendered. I felt held. I knew I was safe. All was well. Surrender brought peace and with it came all the freedom I ever wished to have.
Later, when I was well, that memory inspired me to return to the transplant unit and sit with others, to give to them what had been so freely given to me. But back then I had no room for thought, or even fight. I believe that I survived because I surrendered and let myself sink deep down into the quiet space I felt as I looked out at the sky. Breath by breath, I let myself be breathed. I sunk deeper down into the bed, into each slow, labored breath, and relaxed.
David came every day and sat on my bed, holding my hand in his gloved one. (Visitors had to wash their hands and don latex gloves and wear a mask over their noses and mouths.) He read aloud a chapter a day from Kitchen Table Wisdom by Rachel Naomi Remen. My friend, Elizabeth Wheeler, a psychologist in behavioral medicine, did hypnosis with me to help me imagine myself becoming stronger and recovering. I appreciated each person who prayed for me and sent me love. Like my father, each morning I felt lucky to be able to say, “I’m here.”
Once, in the middle of the night, a new nurse woke me up to give me medication. I felt her apprehension as she tended to me. Her fear of my dying on her shift was contagious and suddenly I felt scared and became anxious. The darkness outside reflected the feeling inside. I repeated Metta to myself as I followed my breath. Eventually, it passed and I slept.
When the oxygen mask came off, I was very weak. It was a major effort to be able to move from the bed to my commode. When I was able to go to the bathroom, it was a thrill, but difficult. To walk down the corridor with my robe, mask, and IV pole, I needed assistance. I felt like a “big girl” when I could wash my own face and sponge myself off. Diane, my nurse, tells me I loved sitting in the warmth of the sitz bath, which she made for me.
Towards the end of my stay, one of the orderlies learned that my counts (blood cells) were up. As a special treat, she wheeled me outside. I remember the wonder of moving from the confines of my small, air-filtered room, through the hospital corridors and out the lobby door into the air. I felt liberated. I sat in my wheelchair and looked about. I marveled at the leaves now filled with color. I smelled the grass and the leaves. I experienced the sounds of activity and the wind brushing my face. I felt the warm moisture of air touching my bald head. It felt like heaven.
I was awestruck. Appreciation of life filled me with gratitude and wonder. Back on the unit, the doctors and nurses were impressed by my willpower and my equanimity. To me, what I had done was effortless and natural. I had simply relaxed. I felt there had been no other choice. As I became stronger, I wrote in my journal:
October 23
It is now 5:45 am. I haven’t been able to sleep so I decided it was a perfect time to pick up my mail, which has been in cyberspace while I was too sick to turn on the computer. The teachers at the clinic are giving me a present of a foot massage this morning and I am excited. I’m also really ready to go home but I can’t yet. I’m a little scared about what it will be like. I am being slowly weaned off of IV’s. My prayer for each day is that nothing eventful happens. I would love a steady recovery without any surprises.
My eyes are lidded right now but I don’t want to close them. There just seems to be so much feeling that I am holding: sadness, joy, grief, awe and fatigue. I have never come so close to death and I pray that David and I will be able to have many years together. To be able to breathe, to BE AWAKE, TO HAVE SOME ENERGY. Consciousness is a miracle.
I am tired . . . it is hard to concentrate. I look forward to my Cream of Wheat for breakfast and I WANT HOT CHOCOLATE WITH IT. WANT. IT’S GOOD TO WANT AGAIN! I was so quiet, so deep down.
I WANT to be alive. I want to eat. I want to play. A woman I met in the infusion room who will be having a transplant next visited me and asked if I had short-term memory loss. If I do, I don’t know it. (I did.) I do know I’m not sure what it will be like to be home again. Lying in bed, I look at people walking, oblivious to the fact that they are breathing so easily. As I hold on to the rail walking down the hall, I am proud of myself. But I get scared when I look at my body and see my flesh hanging there, like Mom’s did when she was dying with lung cancer. Her lying in bed, unconscious and uncomfortable at the end of her life, is seared in my brain. But then I move my foot, I bend my leg, I wiggle my toes, exercising what I can. It helps me realize that I am 53, not 70. I have Mom’s pluck and Dad’s heart and David’s love. Our love grows larger and larger. My time sitting and being with him is a gift. Precious. I know I am all right.
October 24
I GO HOME TODAY! 5 WEEKS! This has been “it,” this small bright corner windowed room where I have observed wind/leaf/temperature change from the inside. I’ve spent a lot of time gazing out the window at the sky. The room faces south and west. I see the sun setting and observe the changing colors, the movement of clouds, the hues of light, dark and bright, ever changing. Below is busyness, life moving, cars, people, trees. Looking out I feel my connection to the vastness of life, and the rhythm of nature. It is reassuring and calming.
Lying here has been like a long retreat, only here I cannot leave and go outside. I focus on moving my body upright. Walking is an effort. I go slowly and not by choice, one foot and then the other. It’s an achievement to walk up and down through the hall holding on to my IV pole and resting on David’s arm. I feel good when I can move on my own, when I am awake. Today I was even able to watch a video, Hello Dolly. I am alive . . .
Later . . . .
Nurses caring. David worrying. My stomach upset. Me quieter than I’ve ever been. I almost died. (It’s a shock to realize how sick I was.) Now I know, yes, this can, does happen. I will die. I also know I want to recover. Please, let such danger be past for now. Let me heal. Let me get strong. May I have many good productive years with life, and with love. Give me time to be of service to others.
I feel Love as I sit still and warm with David . . . continuing to open our hearts to each other.
Teaching/Learning. Walking/Painting. Breathing in. Breathing out. Growing wiser.
May I use what I am learning selfishly and selflessly.
May we all be well.
May we all be free.
May each breath continue to be precious and appreciated.
May a sip of water hold its purity and the miracle of quenching thirst.
May we be alive.
May we be free.
May we be here.
May we stay well.
Love helped me get through this experience. I thank every person who sent me wishes for healing. I don’t know if the gratitude I feel can ever be fully expressed. The love I received was powerful motivation to stay alive and be well. May I be able to give back to others what they have so richly given to me.
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