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.