Employment

My diagnosis with cancer has had a huge impact on my employment and the development of my career. Right from the beginning, the illness competed with work for my time and attention. I first noticed an increase in bleeding during bowel movements on Christmas Eve 2003. I was 31 years old and had just earned my PhD from the University of Michigan after five years of graduate school. I had moved my belongings to Washington, DC in November and was set to start a new job there in January. When the bleeding happened I knew that I would need to consult a doctor. But it would surely lead to weeks of testing, and I needed to be back in DC by January or else lose my job. So when the symptoms didn't immediately worsen I decided to wait until after the move.

Getting settled took time, and the bleeding was intermittent, so I didn't see a doctor until June. As expected, consultation led to testing and testing led to more testing. Eventually, all of the benign causes were ruled out and a colonoscopy in August 2004 revealed a cancerous tumor.

I needed to leave work for surgery, but as a new employee I had only a few days of sick leave accumulated. Fortunately, my employer offered a leave transfer program and my coworkers generously donated their own sick leave so that I would continue to be paid for the six weeks while I recovered.

After surgery I had to go through six months of chemotherapy. I started back at work full time during chemo minus a few hours per week for doctor's appointments. I did pretty well at putting in the hours, although I was less productive than usual since I felt sick half the time.

By May 2005 the chemo had shrunk the tumors and I returned to the hospital to have the remainder removed. That was a major, major surgery. A series of surgeries, in fact. I was hospitalized for weeks and unable to do significant work for months. Luckily my coworkers donated leave again so that I kept my position and pay while I recovered.

I returned to work full time in November of that year. My postdoc position was a two-year appointment and set to expire in January. Normally a postdoc like me would be busy publishing research papers and searching for a permanent job. But with all the medical treatment I hadn't made much progress. So I asked for and received a one-year extension of my appointment.

In early 2006 I was making rapid progress in my research and applying for permanent jobs. My goal was to be a college professor, possibly after a few years working in the pharmaceutical industry. But by June tests had shown that my cancer was regrowing and I started a second round of chemotherapy. It made me sick, my hair fell out, my energy level dropped, I had painful acne, yet the tumors continued to grow. I tried to continue working but really didn't get much done. More and more of my time was being consumed by doctor's appointments to manage the side effects and investigate other treatments.

I stopped my search for a permanent job since I was unfit to even travel for an interview. And what would I do if I found a new job? I couldn't be as productive as I needed to be and I could not imagine meeting the demands of a new college professor while going through chemotherapy.

In November of that year I flew to Michigan for Thanksgiving and to Boston for a scientific conference. During the travel I developed a pain in my leg that made it difficult to walk. I attended only a few hours of the conference to present my own research and had to skip the rest. When I returned to DC we found that tumors were destroying my pelvic bone and I would need radiation to alleviate the pain.

I quit my job in January 2007. The commencement of daily radiation treatments, on top of the pain and chemo side effects that I was already feeling, meant that I just couldn't be productive anymore. I applied for and received disability retirement and social security benefits. It's a relief to have a continuing source of income and health insurance, although it's half of what I earned while working and far less than I could make if I were healthy.

I'm feeling better these days. Radiation made me sicker for a few months but it did fix my leg. I'm walking normally now and feel well aside from the effects of chemo. I've returned to limited work on research with my former coworkers, only about ten hours per week. Things move slowly as a theoretical scientist; sometimes it's hard to maintain interest in research that will take years to have any practical impact.

Lately I've found it more rewarding to apply myself toward other kinds of creativity. This blog, for one, is something that I hope is significant and helpful to others. I am also spending a larger fraction of my time on hobbies of photography and game design. It's still frustrating and infuriating that so much of the past three years has been spent dealing with cancer while others my age are able to move ahead in their careers and focus on the normal concerns of life.

The face of cancer

In November of 2006 I came across a fascinating video on YouTube called Everyday: Noah Kalina Takes a Photo of Himself Every Day for 6 Years. Since I was in the midst of chemotherapy, I became interested in seeing how my own face changed during my fight with cancer. I have compiled six months of my daily photos into Face of Cancer in high resolution or as a streaming movie from YouTube below.



The concept of daily self-portraits is not original to me nor to Noah. An article in the Boston Globe tells the story of a photographer who has been taking his own picture for twenty years. But I felt that the technique would be particularly well suited for chronicling how cancer affects a person's appearance.

Would I grow visibly sicker as chemotherapy took its toll or as the cancer progressed? Is appearance really a better indicator of health than blood tests and X-rays?

This movie begins with the start of my third round of chemotherapy. The second round had made my hair fall out and gave me terrible acne. I also had great pain with walking, which we would later learn was due to a tumor destroying my pelvic bone. The second and third months of this movie include a period of radiation treatment targeted at that tumor.

As an artist I regret not having photographs of earlier periods in my treatment such as hospitalization and recovery from surgery. But I had not yet conceived of addressing my cancer with art and daily photographs are not the sort of thing that family members usually think of when visiting a sick relative.

Washington, D.C.

I moved to Washington DC seven months before my cancer was diagnosed. I live in Cleveland Park which is a nice residential neighborhood less than three miles from the White House. After the first surgery I was out of work for six weeks to recover. During that time I learned several advantages to being in a big city like Washington when you get sick:

My apartment is just blocks from a business district so I can easily walk down to restaurants, grocery stores, coffee houses, a movie theater, and a Metro subway station. That's been great for post-surgical weeks when I wasn't allowed to drive and had trouble walking. Going to the shops was good exercise for recuperating my strength and having some human contact in a bustling city, even if it's mostly nonverbal, is a big help for maintaining mental health during long periods of convalescence. I can't imagine living with cancer in some of the small towns and quiet suburbs where I have resided before. I would stay indoors for days on end and be left feeling like a helpless patient.

I have a small public park a block away and a real treasure, the National Zoo, three blocks away. Being part of the Smithsonian Instituion, it has free admission so I visit about once a month. It's therapeutic to get outdoors into lush foliage with nice trails and watch the animals play. The Zoo is also where I went with my girlfriend on our fourth date — the day that I told her about my disease and gave her the first chance to run away.


The other attractions around DC give me plenty of excuses for outings and help entertain friends and family who come to visit or caretake. The National Cathedral is nearby; I'm not religious but it is comforting to tour the grounds, relax in the gardens, attend an occasional concert, and bring my visiting relatives to pray in a place that should be close to God, whatever he is.


Another of my favorite places is the National Mall. The museums excite the scientist and artist in me. The memorials help me place my life in the context of history. And I enjoy watching the tourists who are coming to these sights for a once-in-a-lifetime pilgrimage. It makes me feel special to be living in a city that attracts visitors and workers from around the world and makes the national news and talk shows every night.


I'm also fortunate to have easy access to great research hospitals: the National Institutes of Health, Georgetown University, Johns Hopkins. When I've gone there for clinical trials and rare procedures I've seen that many of the other patients have to travel many hundreds of miles to get the same treatment. I'm still struggling with the idea of fate, but if I had to get sick then this was the best place to do it.

There is a dark side to Washington too. This is where the altruistic and ambitious come to serve their country. Unfortunately some are a bit more ambitious than altruistic and some become arrogant, greedy, and corrupt. You can sense the competitiveness and egomania that infects newcomers. Facing cancer seems to vaccinate one against fascination with the petty things. Although I am sometimes bitter about how cancer shoved me off of my intended path in life, I am glad that it has also pulled me out of the rat race.

Flashbacks

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.

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.

Hospitalization

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.

Exploratory surgery

In March 2005 I finished my six-month round of chemotherapy with FOLFOX. One way of measuring effectiveness was blood tests for carcinoembryonic antigen (CEA). It's a protein that is normally found in the blood of a developing fetus but is also produced by certain cancers, especially those in the digestive tract. A normal CEA level is below 2.5 nanograms per milliliter. Mine was around 24 when I was diagnosed, 13 after my first surgery, and less then 2 by the time I finished with FOLFOX. That was good news, suggesting that my metastatic tumors had shrunk or disappeared.

During chemotherapy I also went for scans every two months. Computerized tomography (CAT) scans looked for tumors by measuring physical structure. My CAT scan before surgery only showed the primary tumor — the other tumors throughout my abdomen were too small and flat to show up. Later scans were clear, which was good news since it meant that nothing big had grown but didn't necessarily mean that small tumors didn't remain.

I also had positron emission tomography (PET) scans which look at the metabolism of tissues. After fasting for several hours I would be injected with radioactive glucose and sit quietly for an hour. Cancer cells would be particularly hungry for glucose, so it would become concentrated in those tissues. Then I was slowly scanned through a radioactivity detector to map where the glucose had gone. High concentrations in the brain, heart, and bladder were normal. Bright spots elsewhere could be due to cancer. My PET scans were clear, meaning that my tumors were either too small to be detected or gone.

Going through treatment for cancer is of course unpleasant, but one thing that made it easier for me is the curiosity about how all the tests and treatments work. I am a scientist by education and I'm always curious about how things work, why certain things are popular, and human nature. Studying medicine through the eyes of a patient kept me interested and my abilities as a scientist kept me thinking about how barbaric some modern treatments are and how much better we could do in the future.

Chemotherapy had worn me down a bit physically, I'd lost several pounds, and I was tired of dealing with my colostomy. But in some ways I was actually feeling better than before diagnosis. I hadn't realized that I was feeling sick before since the onset was so gradual. But as surgery and chemotherapy cleared the cancer I began feeling better. And once I finished chemotherapy and recovered for a few weeks I started feeling great.


The doctors gave me two months of rest to recover from chemotherapy and let the side effects clear. I took a trip to Michigan to visit my family, attend my brother's college graduation, and celebrate my 32nd birthday. It was nice to be back, feeling better, and spending happy times with family and friends. Just six months earlier my future was grim and my relationships had gloomy undertones since it seemed that I was dying. It was a triumph to see those people again, feeling better than ever.

Still, we needed to know if there was any cancer left in my body. The surgeon who took out my primary tumor had told me that advanced colon cancer that has spread throughout the body is nearly impossible to cure. It was beyond his ability to remove the metastases, but he knew of a clinical trial at the National Institutes of Health (NIH) on a radical surgery to remove widespread abdominal tumors followed by direct application of heated chemotherapy drugs. The best hope was to shrink the tumors with chemotherapy and then go for that surgery.

Since my CEA was low and my scans were clear, the last step to check for disease was visual examination. So I checked into NIH for exploratory surgery. They sedated me, made a couple small incisions, and put a laparoscope into my belly. When I awoke I was told that, yes, there were still tumors in there. In particular there were a few on my liver and on the bottom of my diaphragm. That was somewhat bad news: colon cancer typically kills not by infiltrating the colon but by migrating to the liver, lungs, or brain. But the doctors were optimistic because the tumors were only the size of grains of rice rather than the size of quarters as seen in my first surgery.

With my otherwise good health and the assistance of chemotherapy, I was a prime candidate for the clinical trial. So I stayed in the hospital and prepared for the big surgery to hopefully get rid of the remaining cancer and cure me.