Most of my hospitalization time was spent at the National Institutes of Health Clinical Center. It's a fine institution that serves as the site for trials of new therapies. The building sits in the middle of a large, busy research campus and features a multistory atrium near the lobby.I stayed on the floor dedicated to surgical oncology. Some of my floor mates were there for the same reasons as me; many others were there for trials involving immunotherapy and had to live in isolation. The patient population there was generally younger than I saw in other hospitals and cancer clinics. They seem to like getting young, strong subjects for their surgical trials since those patients are less likely to suffer from extra complications like heart disease or diabetes. But there was also a population of older, sicker patients. Some of the trials at NIH are in the early phases and little is known about their safety or effectiveness. This is where patients with no more options and little chance of survival go for one last shot at a cure and a contribution of one's own living body to medical research.
A typical day as a patient in the hospital began with a nursing assistant waking me at 6:00am to take vital signs and a weight measurement. Getting out of bed and standing on a scale is hard work for somebody who recently had their belly opened and all their organs poked and sliced. It often left me panting for breath, so maybe getting a little exercise is part of the purpose behind that routine.
The next activity is doctor's rounds at 7:00am. Sometimes I'd order breakfast of yogurt, juice, and cereal while I waited or else I'd watch the early morning news. I liked to be awake when my doctor came by. He would be accompanied by an entourage of senior doctors, medical residents, medical students, and specialty nurses. The doctor in charge of my care would stop outside the door of my room, give a brief background and update to the entourage, and then come in to look, poke, and question the condition of my body. I tried to put on my strongest face of the day — the better I looked the sooner they would let me go home. It was also a good time to ask questions of the doctors and address any problems I was experiencing.
Shortly after the main doctors on my case visited I would often be seen by doctors and staff in auxiliary specialties: pain management and palliative care, physical rehabilitation, psychiatric care, clergy. This is one area where an excellent research hospital really outshines a standard hospital. These people all became familiar with my case, visited often without my needing to request attention, and saw that other parts of my body and mind beside the surgical site were healing.
My mother went on family medical leave from her medical practice to take care of me during my longest hospitalization. She would usually get to the hospital around 11:00am to help bathe me. It's embarrassing to have to rely on one's parents for basic bodily care as a 30-plus year old. But I just wasn't physically capable of filling a tub of warm water and washing all my bits. If my mom were away for the morning then the nurses would help a little in getting me set up with water, soap, and towels. But that meant I was restricted to what I could reach and often had to skip extra steps like washing my feet and powdering my back. Either way, a daily bath would leave me exhausted and I would finish by half napping through a show of The Price Is Right.
During the day the main orders of business were eating sufficient calories and getting up for walks around the floor. Patients and their families got to know each other since many of us were long-term or repeat residents. There was a nice sun room at the end of the floor with sofas, tables, TV, a computer, games, and puzzles. It provided a healthy change of scenery for patients, a place for visitors to retreat when the doctors need some time alone with a patient, and an environment for socializing with fellow patients and visitors. I don't think it's common, but all hospitals should have rooms like that.
My mother also served as an advocate for my health care: tracking down nurses when I needed one, questioning the doctors and pushing for treatment of problems like pain management, and helping to keep me sane by remaining as a link to my normal life. My girlfriend visited me every day — she taught a class in the evenings so she would get to the hospital around 10:00pm and stay for an hour until I fell asleep. That was beyond official visiting hours, but fortunately most of the nurses knew her and me well enough not to give us any trouble.
One hard part of hospitalization is loss of control. My waking time was dictated by the nurses and doctors. Every urination and bowel movement was handled and measured by the nurses to measure my intake/output balance. I was ordered to take pills and had to swallow them while the nurses watched, regardless of whether I was sleeping or feeling nauseated when they came. If I needed medication for pain or nausea I had to call a nurse and wait for the order to get filled by the pharmacy. I depended on nurses or visitors to refill my water cup and on the often unreliable kitchen staff for meals. There were computers in the rooms, but I didn't have the energy or attention span to use them. I was wearing humiliating gowns or, when I was lucky and they had a pair in my size, pajamas. But I couldn't choose the color or pattern. I couldn't open a window or turn up the heat in my room. During my ileostomy reversal I had a roommate and therefore lost privacy and control over noise.
Even the best of hospitals feel more like prison than home. They are also just as likely to make you sicker as they are to make you better. My advice to the loved ones of hospitalized patients is to continue to visit them, send cards and flowers, and advocate for their care. The doctors will attend to the disease, but friends and family are invaluable for supporting the rest of the patient.
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