The face of cancer - 9 months

It has been three years since my diagnosis with Stage IV colon cancer. Three years since my first surgery and three years since my first chemotherapy. And it has been nine months since I began taking daily photographs to chronicle the changes in my appearance.

Three months ago I posted my first Face of Cancer video, and now I have an update. It is available in high resolution or as a low resolution stream from YouTube.



I am still in my third round of chemotherapy, nearing a year on that treatment. I'm feeling pretty well, walking normally, traveling more, and being productive. It's hard to believe that in January I was bald, had a broken pelvis, and was about to go through several months of pain and bleeding due to radiation treatment.

In my eyes the video shows me feeling better as the cancer and treatment effects subside. I hope to continue in that direction and have another, even healthier update at the one year mark.

Infertility

Three years ago tomorrow I was diagnosed with colon cancer. Five days later I had surgery to remove the two-inch tumor that a colonoscopy had found just above my rectum. I was 31 years old, fresh out of graduate school, and dating but unattached.

On the day of the surgery I was still stunned from the diagnosis. I had high hopes that the cancer was localized and could be removed without permanent damage that would curtail a long and ordinary life. But as I woke from sedation after the surgery I learned that the news was much worse. The cancer had spread and was probably incurable. There were unremovable tumors throughout my pelvis and abdomen. To protect the remaining two-thirds of my colon, the surgeon diverted it to an opening in my abdominal wall rather than reattaching it to my rectum. My bowel movements would now exit through that hole into a plastic bag that I must wear, and without a sphincter I would be unable to control when gas and stool would make its exit.

Still, I didn't feel like I was dying. I hoped that chemotherapy or further surgery would yet buy me months and years of good health. I wanted to continue with my life on the path I had been taking before: work, education, recreation, and relationships. I was still young, ambitious, curious, and horny. As I learned about the changes in my body I wondered, "Can I still walk and work and travel like a normal person? Will anybody find me attractive again? And if they do, can I still function sexually?"

That's a big worry for a young man. It might be true that 20% of a man's waking hours are spent thinking about sex. Probably more if you count the time a man spends trying to make himself more attractive in the hopes of winning a mate (grooming, exercising, earning money, improving education, gaining power). It's far from the only important aspect of a relationship, but it would be a big blow to my identity if removed completely.

The worry was fueled by the fact that during my three days in the hospital I never had an erection. Any female reading this will probably laugh, but that's the longest that organ had gone quiet since age 12. A day or two after I got home from the hospital, while I was still in pain from surgery and in shock from everything, my curiosity drove me to test it manually. I was relieved to discover that I could still get an erection and achieve orgasm but, strangely, there was no ejaculate.

I thought it might be a temporary change. After all, my body was full of painkillers and that general area had received some startling rearrangement with a scalpel. Maybe it had reverted to how it worked when I was 12 and would regain full function after a few weeks' recovery.

I didn't ask my surgeon about this symptom. How could I? He was telling me how poor my prognosis was and that in the best case scenario I would need months of chemotherapy, a heroic surgery, and still be left with a brief and uncomfortable life. Should I say, "Yeah that's all fine, and I know that I'm unmarried, but what really worries me is that I can't ejaculate?"

Three years later the situation remains. I have a girlfriend now and appreciate that most things work. And it is convenient to have less mess and no need for extra birth control. But it does make orgasms less intense, and as a man it makes me feel less potent and powerful. And it means I won't ever by having kids, at least not without major medical intervention.

I'm not sure I wanted kids anyway. And I don't think it's responsible for me to try when it still appears unlikely that I would live long enough to raise them. I see my peers becoming parents and it looks like an enormous burden. I know that it's rewarding, but maybe I'm better suited to be a teacher and an uncle than to be a father myself.

Scrambled brain

Chemotherapy continues to wreak havoc with my memory. But the scientist in me has been interested to discover some clues about how memory works.

I've known since my first round of chemotherapy in 2004 that the drugs interfere with my mental function just as much as they produce the usual bodily problems like nausea and diarrhea. On bad days especially I have trouble forming new memories, which is a merciful form of amnesia. But on those days I also have trouble recalling events from good days in the past. That's rather inconvenient since I'm currently on chemo two weeks per month and it's hard to get any work done or keep up with everyday tasks while I have Swiss cheese in my head.

Some of the memories return when I go off of chemo, but many seemed to be lost permanently. However, I have discovered that associated senses can bring back past events. A familiar smell or returning to a particular place can release a flood of related memories. So it's not always a loss of the memory from my brain but a disruption in my ability to access that information at will. I recently learned more about this phenomenon due to the assortment of medications that I take along with cancer treatment.

My Xeloda chemotherapy gives me mild to moderate nausea and I haven't found a good medication to alleviate it. I have medications that work great for severe nausea, but they have side effects like drowsiness, constipation, or unpleasant taste, so I try to avoid them when my nausea is milder. One medication that I sometimes use is Marinol which is synthetic THC, the active chemical in marijuana. It sometimes helps suppress the nausea and give me the munchies so that I can enjoy a good meal. But for me it takes a couple hours to kick in, it doesn't always work, and when it does work it can make me feel a little goofy. Since my main goal is to be able to perform and enjoy my usual activities, most of which are cerebral, I avoid Marinol except on the worst days when I would be debilitated by nausea otherwise.

I thought that maybe the reason I wasn't getting consistent relief from Marinol was that I was taking too low of a dose. The pills are 5 mg and the directions are to take one every 2 to 4 hours for up to 30 mg per day. I had only ever taken a single pill in a day. So on a bad day last week when the first pill didn't have a noticeable effect after two hours I went ahead and took a second one.

Finally my appetite improved and I made myself a nice dinner. But two hours later, when I thought that the first pill should be wearing off, something strange happened. I was playing a video game online and I started having trouble remembering what I was doing. I accidently made a move against my teammate because I forgot he wasn't my opponent.

Then over the next half hour the confusion increased. I kept realizing that I was playing a game as if it were something that I didn't previously know: "Oh yeah, I'm playing Starcraft. I guess I better make a move. Oh yeah, I'm playing Starcraft. I guess I better make a move. Oh yeah, I'm playing Starcraft...."

I had just enough presence of mind to realize that I should probably get off the computer and go lie down on the couch. I think that I won the game, but I can't remember exactly how. For the next few hours I watched movies on TV that I've seen a thousand times before: Saving Private Ryan, Star Wars, etc. But I kept noticing scenes as if I had never seen them. My appetite was better, but I was afraid to eat since I couldn't remember whether I had already eaten and didn't want to get over full.

I started to recall very old memories from my childhood and high school days. I experienced a strange sensation of time — I kept thinking that my present state of watching movies on the couch was also a memory. I couldn't distinguish which memories were closer to the present; they all seemed equally real and relevant to me. It was only intellectually that I could reason that it must be whichever memories in which I was oldest that belonged to the present.

I managed to keep myself planted on the couch for several hours and then go to bed. At least I think I did. My main thoughts at the time were: "If this is how it feels to smoke marijuana then I don't see the attraction" and "Taking two Marinols is something to avoid in the future."

I felt very confused the next day. The newly refreshed memories of my childhood were in my head and I still didn't have an innate sense of what was past and what was present. Ironically, even though I'm going through treatment for cancer, this is actually one of the happier eras in my life. It's disconcerting to feel that I might still be going through the hell of high school and the turbulence of early adulthood.

A week later I am getting a little more convinced that July 2007 is the present. With a few days break from chemo I managed to get my brain back in gear and get some work done. I have also realized that the episode reveals that many memories that I thought were lost due to time and chemotherapy are still stored in there somewhere and await rediscovery.

Kanreki (Second birth)

In May 2005, as I prepared for a major operation to remove the rest of my multitudinous tumors, my girlfriend gave me a birthday card with a clipping of my horoscope from Free Will Astrology:

TAURUS (April 20 - May 20)
On a family member's 60th birthday, the Japanese celebrate a holiday known as kanreki. It's a time of rebirth, when the celebrant ritually becomes a baby again and enters a second childhood. Among the many gifts given on the occasion is a red kimono, which signifies that in a sense the person is now freed from the responsibilities of adulthood. I recommend that you treat yourself to a similar rite of passage, Taurus. Even though you may not be turning 60, you are at the beginning of an extraordinarily fresh new cycle. You deserve a red kimono and at least a temporary respite from adult burdens.

This seemed incredibly appropriate at this point in my fight with cancer. The diagnosis with a life-threatening disease had already put me through a mid-life crisis: What is important to me? Have I been leading my life as I should? What would I do differently if I had the chance to start over? I had decided that I needed to focus on my own goals in life and worry less about how quirky and eccentric I appeared to others. I needed to be more of an independent man, acting decisively and forcefully rather than deferring to the decisions of others.

Going into the hospital for weeks of treatment and months of recovery meant that I should forget about my other worries and focus on my treatment. I hoped that the surgery would mean rejuvenation for me — freedom from cancer and renewed vigor as I start life again but this time with greater wisdom and experience.

I didn't receive a kimono other than a small paper one on the card, but I was dressed in hospital gowns. I suppose that was my garb of kanreki.

After the surgery (which became a series of four, due to complications) I was nearly helpless. I was fed by a machine since I couldn't take food orally. Every day my mother or my girlfriend helped bathe me since I barely had the energy to stand or the muscles to reach my own head and feet. My brain was wiped clean by the chemotherapy drugs and kidney failure; I lost many memories of treatment and earlier times and my intelligence was reduced to that of a toddler. It really was like a second infancy.

As the surgical wounds healed, my body adapted to its new arrangement and my mental abilities gradually returned. Several months later I went back to work and resumed aspects of a normal life. I tried to conduct myself as I had decided I should, but it was hard not to revert to old habits. I still felt embarrassed and uncomfortable around most people and I felt guilty when I worked on my own creative projects rather than spending 9 to 5 at a regular job.

My second infancy was short-lived. Before I had fully recovered from surgeries there were signs that my cancer was returning. I was just making progress along the chosen path of my new life: producing exciting research, applying for a new job to move toward my goal of becoming a college professor, winning an award for my entry in a Science as Art exhibition. But then I had to stop all that to start another debilitating treatment.

I hope that I shall yet get rid of cancer and enjoy a long second (or third) life.

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.