I often wonder what doctors think about while sitting on their swivel chairs across from me. Do I frighten them? I am their peer: young, educated, a successful academic, a mother, a wife. I’m not one of “those people,” who drank, smoked, ate poorly, etc. If it could happen to me, it could happen to them. Do I remind them that they are not immune to disease and death by virtue of their academic pedigrees and thick wallets?
Or do I remind them of their impotence? They cannot cure or even control my disease. For certain scleroderma-related problems, like renal crisis and pulmonary hypertension, doctors can offer patients life saving treatments. But for many of scleroderma’s manifestations, there is little doctors can due to ease diseased-associated pain or organ malfunction. And I happen to be one of those patients for whom no useful treatments are available. Along with me, my doctors are often simply waiting to see what course my disease will follow: fast and furious or slow and steady.
But they aren’t impotent. Yes, I am going to die long before I become eligible for AARP membership. For years, my body fell apart little by little. My doctors monitored my disease progression, tweaked medicines to make me more comfortable, and stood at the ready to pull out their arsenal of “big guns” when if I should ever decide that I was desperate enough to try anything. The “good” doctors knew me as a person – a professor fond of teaching and research, a wife, a mother of two young children, an amateur chef and seamstress, a gardener—and, by doing so the gained my trust. To the “so-so” doctors I was just another patient in a long line of many. One refused to call me by my first name despite my repeated requests. I remained “Dr. Mayer” to him until I decided I needed to be on a first name basis with my doctor.
I suppose that health care providers find it difficult to establish personal relationships. Keeping emotional distance makes it easier to bear the inevitability of patient’s demise, especially in life-threatening diseases like scleroderma. Some doctors think it is unprofessional. Others buy into the idea that “Doctors Cure; Nurses Care,” absolving themselves of their duty to their patient, the patients illness, and how it effects their lives.
The inpatient hospice is a small 6-bed facility, which allows patients and staff time to get to know each other a little on this important last leg of life’s journey. Nearly everyday I have a five to ten minute conversation with one of my nurses and learn a little bit about them. They listen to my fears, they offer reassurance, and they share their experiences of helping people through the dying process. They cradle me and kiss my hair, they sit on my bed and talk, they see my as a person, not a patient.
My worst hours are between midnight and two when a nurse named Mary is usually on duty. I awake sometime during those hours drenched in sweat and shivering from head to toe. An angelic figure appearing out of the dark, she dries me off and changes my linens and puts me back to sleep. “You are so caring, Mary,” I told her one night. “You are easy to love,” she answered, “I pray for you every day.”
I used to be a nurse. I was attracted to the field because I was social and, honestly, young girls in Northeast Philly didn’t set their career ambitions too high. Surrounded by so many loving nurses here, I have started t think back to my nursing days. Sometimes I wonder if I was a bad provider. Did I dismiss my patients concerns? Was I rude and uncaring? Was I indifferent to their suffering?
When I was in nursing school, I worked on an adult medical unit. Most of our patients were receiving chemotherapy or early victims of the AIDS epidemic. I spent most of my shifts dressing bedsores that developed from the combination of being chronically ill and bedridden. I can only assume the sores where incredibly painful though most of these patents had grown used to the unrelenting consequences of their disease. I do not recall ever having a patient cry out during a dressing change.
I changed many dressings during that summer, but two patients stand out in my mind. On of them was a tall black man with metastatic cancer; he was thin, dark and tall like a Masaii warrior. When I met him his was on the losing end of a devastating battle. I remember walking into the dimly lit room and thinking that he seemed very sad and very far away. I told him my name and that I was there to change his dressing. As I unraveled the gauze I tried to focus on the task at hand. Having only worked for a couple of months, I was relatively new to doing dressing changes independently. And I secretly dreaded them. After I had removed all the gauze, I saw what remained of the man’s penis. The ulcers had consumed so much of the tissue that in parts, I could see the catheter tubing peeking through the remaining areas of healthy skin. “No wonder he is so sad,” I thought. How horrible to suffer in this way, to lose your dignity as you lose your life. I recall that I changed his dressing in silence and said good-bye.
Another night I was assigned a breast cancer victim in her early 30s. I had developed the habit of reading patients charts, especially their patient histories. I didn’t know what the field of public health was yet, but looking back, I realize that I had been fascinated by epidemiology, the study of diseases in populations. With all my patients I wanted to see if there was some clue to how they arrived at their unfortunate destination. Reading the women’s chart I felt frustrated. She was a healthy aerobics instructor with absolutely no risk factors. She was a model of clean living. “How could that be?” I thought naively, “There has to be a reason.”
I entered her room and greeted her. I’m sure I told her that I was there to dress her wounds and prepared my supplies. When I lifted her gown I was surprised to find that the bandages covered her entire chest. I removed the bandages while the patient lay there quietly. When I reached the final layer, I discovered that the woman’s entire chest wall was covered with tumors. It looked like mushrooms were growing out of her skin. I was shocked and went through the motions of changing the bandages without uttering a word. I felt certain that if I opened my mouth I would not be able to control my emotions. She lay there throughout the dressing change stoic and distant.
I think of those two patients now and then. They must have felt so alone in that room with me as I changed their dressings like some mindless robot. I was trying to be professional; I knew the last thing these patient’s need was to comfort a young nurse. Now I think to my self, “Would it have been so bad to cry?” or to say, “This is not fair.” I wish that I had had the maturity and strength to look these patient’s in the eye, hold their hands and say, “I’m sorry for what you are going through.” I wish I had pulled up a chair and given them the opportunity to share their grief and anger and sadness. But I was too young and stupid and naïve to know how awful it is to be sick and suffering and facing your mortality. I try and remember that when I experience the callousness of providers. I try to remind myself that they don’t understand or know what to say, so they say nothing. Just like I did 16 years ago.
Now on the receiving end of care I realize the healing power of a good nurse. I wish I had see it back in my younger days and used it more effectively.
After experiencing a good week of cough control without nausea, the nausea is back full force. This has always been the pattern a one-week honeymoon on narcotics followed by a week in bed with crippling abdominal pain. I now need help to walk from the bed to the bathroom and I am gasping for breath when I return to bed. I am being to accept that this is a battle that I cannot win.
Perhaps some will think less of my or consider me a quitter, but I can suffer no longer. Today we are going to discuss a plan for slowly backing off the TPN. Eventually we will get to a point where we hydrate for comfort purposes and wait for me to slip away.
I’m tired everyone. I have fought a long and hard fight, but I need a graceful exit strategy now. Of course my heart is broken and my dreams are shattered but I feel in my heart that the most loving thing to do is set myself, Bill, and the kids free. I have to follow my heart.