Tuesday, May 15, 2007


One of the major side effects that chemotherapy has had on me is chemobrain, especially in the aspect of memory impairment. I have a hard time remembering what tasks I have for the week. I write down lists and appointments but that doesn't help much since I don't remember that I've written them down. I just come across the slips of paper and notes in my planner and realize "Oh, yeah, I was supposed to do that yesterday." I have trouble recalling conversations I had a week ago or the plot of a movie I watched recently.

But as my abilities of intentional recall have faded I've become much more aware of unintentional recall. A scent or a sound or a position of my body will instantly remind me of a situation I experienced years ago. The smells of certain papers and inks transport me back to sixth grade science class, sitting at my desk in that windowless room and opening a new textbook. When I was in Michigan earlier this month, the smell of the first grass cutting of the year reminded me of a summer spent at my grandparents' farm along with all the related visions and experiences.

The smell of a certain kind of rubber reminds me of riding an elevator up to my oncologist's office for another dose of chemotherapy and instantly turns my stomach. Walking down the hallway to the bathroom at work reminds me of days when I felt sick and months when going to the bathroom meant opening an ostomy bag and squeezing out the feces.

Hearing snippets of a Muppets song reminds me of a commercial that played while I was in the intensive care unit, along with the feeling of my body in the hospital bed. And the taste of water from my Thermos cup. And the view from my darkened room into the yellow-lit hallway. And the routine of daily X-rays in the morning. And the feel of a blood oxygen monitor on my finger. And the sound from racks of instruments behind my head. My voluntary access to memories is disrupted, but brief sensations can release a torrent of recollections.

It's springtime in Washington, DC with a sprinkling of summer-like days. Many memories are triggered by the smells of blooming plants, the vision of greening foliage, and the angle of sunlight at this time of year. This will be my fourth summer in DC; before that all of my other summers were spent in various parts of Michigan or Missouri. So when environmental sensations trigger memories there is a limited number of experiences tied to these sights and smells.

One summer ago the return of my cancer was being diagnosed and I began a round of chemotherapy that made me feel awful. Two summers ago I was undergoing an enormous and complicated surgery, leaving me hospitalized for one month and struggling to heal for many months after. Three summers ago I was feeling sick, going through the tests that eventually diagnosed my cancer, and undergoing the first normalcy-mutilating surgery.

Until recently I was taking the anti-depressant drug Paxil to help suppress what the doctors call associative nausea. I wanted to try getting off of it to see if I could regain some of the mental sharpness and ambition that I feel I've been missing. My good days have felt better since stopping the drug, but these flashbacks are coming much stronger and more frequently.

Tuesday, May 1, 2007

Radioactive man

I am radioactive man. At times, at least. About every six months I go to a specialized radiology clinic to get a positron emission tomography scan. After starving myself overnight, the technician removes a syringe full of fluorodeoxyglucose from a lead box and injects it into my arm. The glucose-hungry parts of my body such as brain, kidney, and cancer cells consume the fluorodeoxyglucose for energy.

The fluorine (colored green) in fluorodeoxyglucose has an extra neutron, making it unstable and prone to radioactive decay. Every 110 minutes, half of the fluorine atoms emit positrons to transmute into stable oxygen. The positrons zip through my body for a few millimeters until each collides with an electron. Upon collision the positron-electron pairs of particles annihilate each other and emit two gamma rays moving in opposite directions.

During this time, I lay on a mechanized platform that slowly slides me through a detector tunnel. As the gamma rays shoot out from my body the detector notes their position and trajectory. Then a computer compiles the data and constructs a three-dimensional map of the metabolic activity in my body.

I don't feel anything physically except for hunger and muscle cramps from lying still for two hours. But I like to imagine that all of the X-rays, gamma rays, and poisons are imbuing me with super powers.


I have had three lengthy hospitalizations for my cancer treatment: 3 days for the removal of my primary tumor and creation of a colostomy, 8 days for the reversal of an ileostomy, and more than 30 days for the big surgery to remove my peritoneum and all visible tumors on the organs.

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.