Sunday, December 2, 2007

Friendships

One of the depressing results of cancer is its impact on friendships. When I was first diagnosed I gave the news to some of my closer friends. Many responded supportively, and some who I knew only moderately well became closer and more supportive upon hearing the news.

But others who I thought I had been close with did not respond at all. For a while I thought that it was a case of finding out who your true friends are in a time of crisis. But then in a cancer support group I learned that there is another common explanation. Sometimes people don't know how to react to a person with cancer. They might think that you want to be left alone, or they're not comfortable dealing with illness or intimacy. Especially in a young group of peers many will not have experienced a friend fighting cancer before.

Cancer has also interfered with forming new friendships. After three years I realize that the vast majority of those close to me are people I met before diagnosis. There are many people who I knew casually before and have gotten to know better since, but there are very few who I have met and developed as friends entirely after diagnosis.

I think one reason is that I appear as a different person while I deal with the disease. Chemotherapy, surgery, radiation, and the cancer itself all detract from my well-being and the quality of my personality. There are good days and bad days, most days now I am less capable than most days before I got sick. I can't be as active as I want nor as strong, cheerful, talkative, adventurous, intelligent, or productive.

People who knew me before see me as temporarily handicapped and treat me with patience and compassion. Their impression of me was based on my former personality, and if they've known me long enough then three years of illness hasn't brought down my average too much.

But those who've met me recently see a person who is weaker, slower-witted, constrained by unpleasant bodily maladies like nausea, diarrhea, and fatigue. I'm not around as much for work or education. I don't go to scientific conferences or social gatherings as much as I'd like. I have fewer opportunities to meet new people and to get acquainted with those I do.

Actually I think I've done remarkably well during my illness and I'm grateful for feeling as good as I do. And in many ways what hasn't killed really has made me stronger, wiser, and more compassionate. Yet it's still regrettable to think of how much more I could be doing with good health.

Thursday, November 8, 2007

How cancer starts

My recent genetic testing has rejuvenated my wondering about how cancer starts. I'm not a biologist, but I am a physicist and it's natural for me to try understanding the behavior (and misbehavior) of our bodies and to hypothesize about what mechanism has caused my and other cancers.

First, I'm amazed that the human body works at all. It's an enormously complex machine that actually manages to keep itself alive rather well. It can accept a huge variety of food to maintain its structure and chemical balance. It takes all sorts of abuse and repairs damage to itself for years and years. Mechanically it is far more durable than mankind's best automobiles and airplanes. Computationally it performs tasks easily that sixty plus years of exponential growth in electronic computing has barely touched.

This is all accomplished through interacting chemical systems refined over millions of years of evolution. Our bodies are full of countless tiny chemical reactions tuned by feedback mechanisms to keep the whole system functional. There are systems to detect damage, repair it by regrowing lost cells, and stop when the repair is complete.

If we break a bone then a torrent of cells activates to clean up the mess and fill in the gap. Putting more load on our bones and muscles drives them to strengthen. Spending time in bed or as an astronaut in zero gravity spurs our bodies to save energy by diminishing our bones and muscles.

All of these chemical systems repair not only damage to the body as a whole but also microscopic damage to the systems themselves. We are continually bombarded by solar radiation, chemical poisons, mechanical wear, and the gradual disintegration of molecules over time due to the simple vibrations each atom makes a trillion times a second.

Because of all the interactions and redundancy built into us by the driving force of evolution, it takes many simultaneous failures to lead to death of our whole body. It's similar to how accidents work on a larger scale. A traffic fatality requires several things to go wrong: at least one driver disobeys traffic laws or becomes confused by a poorly designed intersection, the other driver doesn't notice the hazard in time, the brakes slip on rain-soaked pavement, the angle of collision bypasses the crumple zones built into the cars, the seat belts and air bags are unused or ineffective, the injuries go beyond what the passengers bodies can repair themselves, and the paramedics are unable to provide life-saving aid in time.

It's rare that a single mistake — taking one's eyes off the road to dial a cell phone or following the car ahead too closely — is enough to result in a fatality. Our bodies have many more systems to catch errors before they kill us. Faced with the danger of spoiled food we can save ourselves by seeing the discoloration, smelling the foul odors, gagging and spitting at the disgusting taste, vomiting, or neutralizing the ingested toxins through the chemical response of our digestive and immune systems.

Cancer is one way our bodies can fail, and it's particularly cruel since it starts as a way by which our bodies succeed: growth and repair. A cancer originates when a cell suffers damage to its genetic code and forgets to stop growing when its task is complete. But our cells have ways to detect genetic changes, so the change won't take effect unless the error correction system fails first. And our bodies already deal with misbehaving cells all the time by isolating and killing them. So there must also be a failure in recognizing the bad cell and stopping its rampage. Cancerous cells have the advantage that they are closely related to our healthy cells so it's harder for the immune system to recognize them as dangerous.

I used to wonder why cancer wasn't far more common. Ultraviolet light shreds our cells and mutates our DNA, but most of us don't develop skin cancer. Some people smoke for decades and fill their bodies with carcinogenic toxins but never get lung cancer. Now I realize that it takes multiple simultaneous failures for cancer to take hold.

A genetic mutation caused by the environment has a chance to be repaired. Or it might occur in a part of our DNA that's not critical — a skin cell changes its pigmentation. Or it could be immediately lethal to the cell and never spread. Or the cell could be recognized and killed by other cells. Or it could grow unrestrained but too slowly to affect overall health.

Environmental damage to our bodies is cumulative because it damages some part of our safety mechanism and makes it more likely that the next bit of damage will go uncorrected. Some of us are born with hereditary changes that didn't happen to have ill effects in our ancestors or that were beneficial under different circumstances.

This explains why it can be hard to determine which substances in modern life contribute to cancer. Maybe a certain artificial color doesn't cause cancer alone but it lowers the bar for the next toxin. Or it depresses one safety mechanism and becomes dangerous when combined with some other factor. Cigarette smoke must be very, very bad that it can so clearly be shown to be dangerous. The impact of the flood of new chemicals in our environment, after our ancestors have adapted though millions of years of savage evolution in a different environment, will be hard to sort out.

Wednesday, October 31, 2007

Genetic mutant

I went to Baltimore today to get genetic test results from my doctors at Johns Hopkins. The results were somewhat inconclusive. It seems that my case is unusual even among unusual cases of cancer.

The first test was for microsatellite instability. They examined the DNA of my cancer cells to check for excessive repeats in the base sequences. Two of the five markers they examined were unstable, qualifying the specimen as having high microsatellite instability (MSI-H). That result is suggestive of a hereditary factor. It's also correlated with a better prognosis: "Colorectal carcinomas with no indication of microsatellite instability (MSS) have been associated with worse stage-specific survival after surgical and adjuvant therapies than those with MSI-H."

The second test looked at the expression of protein production in the cancer cells. With high microsatellite instability they expect certain proteins to be missing from those cells. However, my results showed that all of the proteins they checked were present. It's possible that the proteins were present but nonfunctional due to mutations or misfolding.

Since these first two tests suggest a hereditary cause but are inconclusive themselves, the next step is to examine certain genes from my normal tissue. There are four genes known to be involved in hereditary colorectal cancers and defects in two of those genes produce 90% of the cases. So they will start by checking those first two genes.

I'm not sure whether being diagnosed with hereditary colorectal cancer would be good news or bad. The average prognosis is better, but it also means a greater chance of recurrence and a greater risk for my relatives. The information is also interesting to the doctors at Johns Hopkins academically and might help direct treatment some day in the future.

Wednesday, October 24, 2007

Reevaluation

After a year on Xeloda plus Avastin, my CEA has reached the normal range and stayed there for a month. I took a week off from chemotherapy to share a vacation with my family (mother, three sisters, two brothers-in-law, one niece, three nephews, and my girlfriend) in Florida.

By the end of the week I felt something surprising: normalcy. My energy level is good, my appetite is solid, my skin condition is closer to normal. My previously tumor-ravaged hip joint didn't give me any trouble in miles of walking per day. My mental capacities are slowly improving enough so that I started a fresh batch of computer simulations for work, something I haven't done since declaring my cancer returned in June 2006. I don't feel like I have cancer anymore.

We are continuing with chemotherapy and that alone will be enough to make me feel sick for the coming months. But we have quietly reached the milestone where it's worthwhile to reevaluate the state of my body and look for a basis of hope that good health can last beyond a few weeks or months.

There will be a flood of information coming and it will keep me busy running medical errands. I will receive genetic test results from Johns Hopkins University next week. The following day I will get a radioactive injection for a full body bone scan. I will return to the National Institutes of Health for CT and PET scans. And we'll continue to watch my CEA and see whether it rebounds or stays low.

I'm starting to think about what to do with myself if we declare my cancer in remission and stop treatment. The first time I reached remission we thought I might be cured and treated it as a cause for celebration. This time I'm reluctant to hope for being cured. But for all the unexpected tragedies in life, isn't it possible to sometimes find an unexpected miracle?

Monday, October 1, 2007

Cancer quantified

Since starting treatment more than three years ago, our main measurement of its effectiveness has been the level of carcinoembryonic antigen (CEA) in my blood. CEA is a protein involved in cell adhesion that is normally present in a developing fetus but not in an adult. A plot of CEA versus time shows the history of my cancer's ebb and flow.


A normal CEA level is below 2.5 ng/mL. Higher levels can be produced by gastrointestinal cancers, and levels above 20 ng/mL are associated with metastatic tumors. Note that the vertical scale is logarithmic, not linear, so each major tick is ten times higher than the one below. My CEA was at 23 when diagnosed in August 2004.

Colectomy (removal of the lower colon) and FOLFOX chemotherapy reduced my CEA to normal. A laparoscopic examination showed that I still had many small tumors remaining, so in May 2005 surgeons removed my peritoneum (a membrane covering organs in the abdomen) and diseased parts of many other organs. Then they applied direct, heated chemotherapy to kill any remaining cancer cells.

The surgery seemed successful, but in early 2006 my CEA shot back up to worrying levels. CAT scans and PET scans confirmed that tumors were growing in several spots, particularly around the pelvis. We started chemotherapy with Erbitux and Camptosar, but the cancer kept growing.

In November 2006 we tried the oral chemotherapy Xeloda plus Avastin. The cancer responded well, and my CEA has dropped from a high of 160 ng/mL down to normal. We are continuing chemotherapy since a normal CEA does not necessarily mean that all the cancer is gone. I'll get scans again in a few weeks to see if those have cleared.

Sunday, September 16, 2007

Interruptions

A new school year is starting, and I happen to be in Michigan as September cools toward October. This is where I spent most of my first days of school, from kindergarten to college and graduate school.

I went to a college football game yesterday, the first one I've attended in person since finishing my last degree in 2003. Being back on campus made me think more intensely about the environment of school: the things I enjoyed, the things I miss, and the things I'm happy to be done with.

I became ill during my graduate schooling, and in retrospect my symptoms were probably caused by my cancer and went misdiagnosed for four years. The illness did slow me down sometimes and stunt my activities, but mostly I chalked it up to aging and a delicate constitution and continued about my business. The cancer was not diagnosed until the symptoms became more intense a few months after leaving school.

I wonder what I would have done if the diagnosis was made while I was still a student. Would I stay enrolled? Skip a semester? Leave entirely? I would probably have wanted to stay, but after experiencing surgery and chemotherapy I can't imagine that it would be possible to keep up while going through those.

And if I took a break when would I know to go back? In reality, doctors never say "Congratulations, we've removed the cancer and you're cured!". The results always feel very fragile — the drugs unpredictably knock the cancer down to immeasurable levels and you hope that it doesn't grow back, at least for a while. The chemotherapy may take months or years, and you have no idea how long a break will last when it comes.

Can you commit to years of schooling when you doubt that you can get through uninterrupted? What do you do if a final project is coming due and you start to feel something funny in your body? Do you push through and see the doctor later, or do you drop the schoolwork to go for consultations, lab tests, and scans? What happens to your social network, coursework, and housing if you get pulled away in the middle of a semester and can't return for a year? Does it even make sense to pursue education when you have a fatal disease?

I've met other young cancer survivors and I feel sad for those who were struck in college or graduate school and had to drop out. Myself, I answered many of those questions consciously before I knew what was making me sick and decided that finishing my doctorate was an invaluable goal. Particularly the final year of school I completed through stubborn determination and health be damned.

I'm realizing now that those issues don't stop with graduation. The intense, planned, compulsory institution of education is past (unless I go back as a teacher, which I'd like). But the freeform development of postgraduate adulthood is still enormously impacted by cancer.

Right now I am on a biweekly chemotherapy cycle. I get an infusion on the first day, take poisonous pills for seven days, and then recover for seven days. Out of that I usually feel pretty good for the last four days of recovery, bad for the last four days of poison, and so-so on the other six. My mental capacity fluctuates from good days to bad. I lose memory, quickness, creativity, and ambition on the low days. I imagine that if I were in school I would forget and disregard my classes on one week and realize how far behind I've fallen the next.

I'm trying to figure out how to plan and evaluate events with the knowledge of what's going on in my body. What in the past three years has been a true reflection of my character and what is a temporary handicap of my illness? It's hard to know in the midst of this great disruption.

Wednesday, September 12, 2007

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.

Saturday, August 11, 2007

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.

Wednesday, July 25, 2007

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.

Tuesday, July 24, 2007

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.

Tuesday, June 26, 2007

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.

Friday, June 15, 2007

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.

Friday, June 8, 2007

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.

Tuesday, May 15, 2007

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.

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.

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.

Friday, April 20, 2007

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.

Friday, April 13, 2007

Bravery


Nine months after diagnosis I was done with my first round of chemotherapy and preparing for a big experimental surgery at the National Institutes of Health. A week before I checked in I was due to give a talk on my research at the National Institute of Standards and Technology. There would be a small audience of around fifteen other scientists. And they were very, very smart people including members of the National Academy of Science. They would catch any faults in my work and not be afraid to ask tough questions, so it was a daunting task.

But as I prepared my slides I realized that I was about to check into a hospital where I would undergo very serious medical treatment and face a significant risk of death. Whatever discomfort my audience could inflict on me was nothing compared to what I was dealing with already. A normally stressful event became relaxed when put into a broader prospective.

The talk went well — although the audience members did give me a hard time on parts of my research they were impressed overall. And by being relaxed I was in a much calmer frame of mind and less concerned about protecting myself from possible embarrassment.

I have applied the same attitude to many other tasks in life. I'm less shy about asking for what I want, whether from the service workers at a grocery store or restaurant or from a personal acquaintance. Knowing that my life expectancy is shorter, I put up with less bureaucracy and will take action more readily without regard to social norms.

Being a cancer patient has also changed my relationship with family and friends. They are often much more accommodating and will defer to my desires on matters like what to eat for dinner or how to spend a holiday. This has put me into the awkward position of being a leader out of proportion to my previous social status. I grew up with three older sisters and was used to following their lead. But now I find myself often having to act as an elder toward them. Likewise, more senior coworkers leave me with more power than would be expected for a young postdoc.

Freedom and power can be frightening. I'm sometimes surprised at the courage I can now muster. Was it there all along, or has the battle with cancer changed my personality? I have always been a calm person. Fear is a rare emotion for me, although I do tend to get anxious over minor events. I think that cancer has freed me from lesser worries and forced me to mature faster than I ever would have otherwise.

Tuesday, April 10, 2007

The body of cancer

This is my body. It is thirty-three years old. A part of my body turned bad and began to spread and devour the good parts. For the past three years, numerous doctors have been helping me to kill the bad part. They have treated me with knives, poison, heat, antibodies, and radiation. My scars tell tales of what it means to do battle with cancer.

Hair. I lost most of the hair on top of my head from my second round of chemotherapy and shaved the rest. It's been growing back for three months now. I also lost half of my pubic hair from radiation to my pelvic bone two months ago.

Skin. I suffered acne on my face and scalp from an immunotherapy drug that proved ineffective. The redness is fading but I still some pockmarks on top of what I acquired during my teenage years.

Hands. My current chemotherapy causes redness, pain, and peeling of the skin on my hands and feet. I try to protect them with lotion, gloves, and soft footwear.

Tattoos. The radiation doctor gave me four pinpoint tattoos so that I could be aligned in the radiation machine for each of twenty doses. Two of the marks are on my midline and two are on my hips.


Port. To save the veins in my arm from frequent poking and the risk of burns from harsh chemotherapy drugs, I had a port installed near my left shoulder. It's a titanium disk placed just beneath the skin through which nurses can draw blood and administer medication.

Peritonectomy. I had a massive experimental surgery to remove the widespread tumors in my abdomen. Doctors took out sections of intestine, tumors on my liver and diaphragm, and the entire membrane surrounding the abdominal organs. I developed an infection with scary bugs so they had to go back in twice during the following week. After all of that surgery they couldn't sew me back up in the conventional way. Instead they covered the wound with plastic sheeting and attached a vacuum pump. Over the course of weeks this pulled the wound together and allowed it to heal, but it left a wide and gnarly scar.


Belly button. I still have a belly button, but with all the rearrangements nearby it's pressed closed and barely visible.

Colostomy. When the first surgeon went to remove a two-inch tumor in my colon, he found that it had escaped the colon and spread to nearby tissues. He didn't want to reattach the good part of my colon near the disease, so he opened a hole to the left of my belly button and attached it there. I had to wear a bag over this hole to collect stool but eventually had my colon reconnected.

Ileostomy. The doctors reconnected my colon after they took out all of the tumors they could find. The spot where it was reattached needed to heal, so they opened up a hole to the right of my belly button for digested food to exit from my small intestine. Later they closed that hole but it developed an infection and had to be reopened to heal, leaving an indentation in the scar.

Feeding tube. I took a turn for the worse after the experimental surgery and suffered from infections and kidney failure. I couldn't eat for three weeks, so the doctors inserted a feeding tube on the upper left of my abdomen. I had to keep it in for two months even after I started eating so that the canal could heal properly.

Drainage tube. I was also left with a tube and reservoir attached to the left side of my abdomen near the belt line. It collected excess fluid as my body healed from surgery.

Muscles and fat. I lost ten pounds from my first round of chemotherapy and another thirty pounds in thirty days from the big surgery. I have regained that thirty, but surgery and inactivity weakened my muscles. I have been feeling better lately and am working on getting my body back into better shape.

Body image. I haven't been to a beach or swimming pool since starting my battle with cancer. For the first year I had to wear bags on my belly to collect stool. That didn't seem too attractive, so I did my best to hide beneath two layers of clothing. Later I still had wounds healing and didn't want to expose them to the elements. But now the scars are fading and I'm getting more comfortable with accepting the state of my body. I hope to return to swimming this summer, maybe accompanied by a tale of how I fought a shark and won.

Monday, April 9, 2007

Chemobrain


One side effect of chemotherapy that I never knew existed until I experienced it myself is chemobrain. I noticed after receiving a few doses that along with feeling physically sick I also felt different mentally. My mind was functioning slower as if the gears in my head were getting gummed up with molasses. The effect would be worse for about a week after each infusion and then gradually improve.

I have experienced chemobrain to varying degrees from all three of the chemotherapy regimens that I've received and from a special chemotherapy dose given during my biggest surgery. The main symptoms are:
  • Impaired memory
  • Difficulty concentrating
  • Reduced intelligence
  • Diminished creativity
  • Lack of ambition
During my FOLFOX chemotherapy I felt crappy from infusion on Wednesdays until I started recovering on Sundays. Fridays and Saturdays were the worst -- I would mostly lie on the couch listening to the TV and eating very little. So when I felt a little better on Sunday I liked to get out of the house to see a movie with my girlfriend. But I discovered that I couldn't remember what I saw! I would see the same movies in the video store a few months later and not be sure whether I had seen them already. When my girlfriend reminded me that we had seen them together then I could recall the outing but still not remember much about the plot.

Failing memory is also a problem with relationships. Family and friends will call to check how I'm doing and I won't be able to remember what events we've already discussed or who has called recently. When presented with evidence I will vaguely recall the conversations but I often forget about events without reminders. I've probably done damage to my credit rating by forgetting that I had received bills in the mail and not getting around to paying them until I feel more clear-headed weeks later.

Beyond memory impairment I also suffer from other mental difficulties. My job is very mentally demanding (theoretical chemical engineering) and my personality is intellectual and introverted. But on days when chemobrain is bad I can barely manage to read and understand a newspaper. It's hard to concentrate on a subject or reason beyond a superficial extent. Television has become a good friend for giving me enough stimulation to keep me entertained without demanding much concentration or analysis.

I feel as though I lose twenty IQ points when I'm on a dose of chemotherapy. When I had a big surgery at the National Institutes of Health and was given a massive infusion of 5-fluorouracil I felt like I lost sixty IQ points. I could barely read and felt like an imbecile. Even many television shows were too challenging. The old game show The Price Is Right became the highlight of my days.

I don't know what the biological mechanism of chemobrain is. Maybe the chemotherapy drugs kill some brain cells along with the cancer, digestive, skin, and hair cells. Maybe it's not the drugs themselves but metabolic byproducts, the chemicals released during breakdown of cells, or changes in body chemistry resulting from the chemical load on the kidneys and liver.

Of course the chemotherapy drugs themselves aren't the only thing in my body during treatment. I take the antianxiety drug Ativan to reduce nausea and apprehension on infusion days and other times when I'm not feeling well. I also take the antianxiety/antidepression drug Paxil to manage associative nausea. I've read that anxiety is a big factor in the conversion of short-term memories to long-term storage. That's why people remember stressful events like the Challenger explosion or September 11th so clearly. Researchers have administered antianxiety drugs to prevent post-traumatic stress disorder in victims of war and accidents. I suspect that the antianxiety drugs that I take for nausea likewise interfere with long-term memory. It can be a blessing, since this aspect of chemobrain dims my memories of hospitalization and sick days.

I feel chemobrain most intensely for about a week after each infusion. It gradually fades away over the next couple weeks, and when I get a break from chemotherapy I start to feel really good as my mental abilities return. I often experience bouts of creativity and ambition as if I've been on vacation and just returned to an old problem with fresh eyes.

From talking to other cancer survivors I've learned that chemobrain can be a long-term problem. Many people experience memory impairment for three years after finishing chemotherapy or never recover completely. Being that my job and personality are so dependant on my mental abilities I was frightened that I would lose my intelligence permanently. But during my period of remission I felt at least as smart as I ever was -- maybe even smarter since I've gained wisdom and coping skills from my struggles. So although I still feel hampered by chemobrain I expect that I'll return to my usual self whenever I can get off of chemo.

Friday, April 6, 2007

What to eat

One of the side effects that everybody expects from chemotherapy is nausea and vomiting. I've been fortunate that in 2-1/2 years and three rounds of treatment I have never vomited from chemotherapy. I have had to deal with nausea ranging from a slight loss of appetite to "ugh I feel sick and can't bear to think of food".

Some of the advice that I was given was to try to stimulate an appetite by preparing my favorite foods. I've learned that that can be a bad idea. My first round of chemotherapy involved 6-hour infusion sessions, so I needed to eat something before and during the infusion. I chose some of my favorite snacks and meals: donuts, bagels, grape juice, applesauce, ham sandwiches. Unfortunately after a few weeks my body began to associate those foods with the sickness that I felt from the infusion. Whenever I saw or thought about them I suffered from associative nausea.

Some of those foods I have managed to disassociate from chemotherapy, but grape juice and applesauce still turn my stomach. I also have strong associations with smells: roasting coffee beans and certain brands of pizza remind me of snacks I ate on the days after chemotherapy.

My advice is to choose foods that you moderately like but not your favorites. For me, this means that if I must eat during chemotherapy I stick to snacks like pretzels, animal crackers, and apple juice. I totally avoid my very favorite foods (sushi, steak, certain desserts) on days when I'm feeling sick from chemotherapy. My current chemotherapy regimen takes only an hour to infuse, so I don't eat anything during that time.

One of the lessons that many people learn from fighting cancer is to enjoy all the little pleasures in life. Eating good food is high on that list, and the threat of weight loss from chemotherapy often means a license to eat as much as you want. Good nutrition is also important for staying healthy, so you should consume wholesome and high-quality foods. When I'm free of nausea, it's nice to be able to indulge in fine meals and desserts. Cost can be a concern, but I economize by getting restaurant meals as takeout (saving on beverages, side dishes, and tips) or learning to cook more myself.

I have also benefited from a couple of medications to alleviate nausea and stimulate appetite on those marginal chemotherapy days: Emend for the severe nausea from Camptosar and Marinol for the mild nausea from Xeloda.

Sunday, April 1, 2007

10% chance of survival

What does my cancer diagnosis mean? Will it be fatal? How long do I have to live? How will I feel as the cancer progresses? How, exactly, does cancer kill?

When I entered chemotherapy in September 2004 I learned that I would be receiving a relatively new anti-cancer drug, Avastin. It had been shown to improve the survival of patients with metastatic colorectal cancer. I looked up the drug information to find out exactly what to expect:


In studies, progression-free survival improved from 4.5 months to 7.5 months. Um, that doesn't sound so good. This new drug would add only 3 months to my life, and half of the patients were dead after 12 months. There's less than a 10% chance of surviving for 36 months. Chemotherapy wasn't likely to cure me, it would only slightly slow down the cancer.

However, these studies covered hundreds of patients. What condition were they in when they started? Most people with colorectal cancer were diagnosed in their 50's or older -- I was only 31. Many of them were probably elderly and not in great health overall. Would my youth buy me a better outcome? Is my cancer the same as theirs, or is mine genetically different and might it react better to treatment?

Maybe I can be in that 10% that outlive the studies. Maybe my youth will let me endure stronger chemotherapy and surgery. I don't feel like I'm dying -- maybe I'll live 2 years, 5 years, 10 years. Of course, even if I beat the odds and hold off the cancer for 5 years, that still means that I'll be dead decades younger than those people who develop cancer later in life.

My strategy is to act like I have 2 years to live. I'm not going to quit my job since I still need to pay for rent and food. I'm not going to be sad on every holiday, imagining that it's the last time I'll ever celebrate Thanksgiving, Christmas, or my birthday. I'm not going to stop dating -- I can still do fun things and get enjoyment out of life. Why should I quit trying to live while I still have things to do? What a waste it would be to act depressed and not make the most of whatever time I have left.

However, I should be realistic and deal with the fact that it's very unlikely that I'll reach old age. There's not much sense in overworking now in pursuit of early retirement. My career path might need to change. I have a PhD in chemical engineering and I want to be a professor. But that takes years of devotion, and the early years as an assistant professor can be rough. Can I live up to expectations while going through treatment? Would it be fair to take on graduate students when I might not be able to support them though to graduation?

Today I've been living 2-1/2 years with cancer. I've outlived my initial assumption of 2 years. In fact, I've kept that idea of 2 years as a sliding expectation. It's not just 2 years, but 2 more years. I'm in my third round of chemotherapy, after a period of remission tumors have reappeared in my pelvis and caused some suffering, but they seem to be responding to these drugs and (aside from the side effects of chemotherapy and radiation) I still feel pretty good and functional. I will continue to act as though I have 2 more years. I'm enjoying the annual National Cherry Blossom Festival this week, not with the sadness that it might be my last but with the knowledge that I've seen it twice before as a colon cancer patient and I'm still here, living my life as well as possible.

Monday, March 26, 2007

Into chemotherapy

After surgery revealed that my colon cancer had spread throughout my abdomen, I started chemotherapy in September 2004. My expectations were formed by what I've seen in movies: chemotherapy means vomiting, hair loss, and misery.

The mechanics of chemotherapy was biweekly visits to a small clinic in Kensington, Maryland. There an intravenous line was connected to an infusion port that had been surgically implanted beneath the skin on my chest. This port led via a small tube into my aorta where the chemotherapy drugs are rapidly mixed into the blood.

The drugs used for chemotherapy vary from cancer to cancer and stage to stage. My regimen was FOLFOX-A: 5-fluorouracil (poison), oxaliplatin (mucks up DNA replication), and Avastin (stops blood vessel growth). I started each infusion session with saline and powerful antinausea medication to prepare me for the toxic drugs. Then the chemotherapy drugs were infused, one by one, over the course of a few hours. Finally I was fitted with a portable pump to continue infusing the 5-fluorouracil for the next 48 hours.

Seeing the other patients in the clinic made me realize that getting cancer at my age really was unusually bad luck. In the 2-1/2 years that I've been going to that clinic, I've seen only one other patient within ten years of my age -- a young woman also on the same treatment for colon cancer. Otherwise about half of the patients look to be in their fifties and the rest are older. It's sometimes uncomfortable feeling the extra attention that I draw as a youngster, and I'm less social with the other patients during my hours of infusion than I would be if they were my peers.

The infusion clinic is a surprisingly upbeat place. Most of the patients are in good spirits and the staff is very nice. Having dealt with many grumpy nurses in hospitals, it's a surprise to see the different personality of oncology nurses. I guess part of it might be that cancer is seen as a tragic disease and it tends to bring out extra compassion in caregivers.

The patients are probably cheerful because these are the people who are actively fighting cancer. Chemotherapy makes us feel sick in the short term, but we all hope that it's making us better and many people start to feel better as the cancer is reduced. And it seems that an optimistic attitude really does improve one's physical health.

But sometimes I see a patient with death in their eyes. They look sick, worn down by chemotherapy or the cancer itself, and in bad spirits. It makes me realize what an ultimately serious disease cancer is and what I might have to experience before long. I don't know if these patients really are at death's door or whether their just at a low point. I know that I've looked like a sick cancer patient myself at times, but then I've improved and looked like a picture of health.

I wonder what it's like for the staff to deal with such sick people every day. How many of their patients are lost to death each year? How does that affect their own lives? I know that we all die eventually, but it's exceptional to know that a person is facing death with immediacy and suffering in the meantime.

Saturday, March 24, 2007

Oh the pills, pills, pills, pills, pills, pills, pills


I've been in my third round of chemotherapy since November 2006. When I was healthy the only pills I regularly swallowed were daily multivitamins. My intake of medication changed drastically when I began my battle with cancer. These are the pills that I had to take last week:

Xeloda (pink, elongated): Poison. The compound in these pills is metabolized into 5-fluorouracil (5FU) in the body. 5FU interferes with DNA replication and kills growing cells. The target, of course, is growing cancer cells but it also hits the digestive system and skin. These pills cause pain and peeling in my hands and feet along with slight nausea, fatigue, and chemobrain.

Marinol (brown, sperical): Synthetic THC, the active ingredient in marijuana. These help eliminate nausea and stimulate my appetite. I take one before dinner on the days when Xeloda is making me feel icky.

Prilosec (darker, shinier pink): Acid reducer. Prevents heartburn and related nausea from stomach irritation caused by Xeloda.

Immodium (pale green): Antidiarrheal, necessary when Xeloda makes my intestines unhappy.

Oxycodone (white, circular): Pain killer. I received four weeks of radiation therapy in January and February to treat a tumor on my pubic bone. The radiation also caused external and internal burns nearby, particularly irritating my rectum. I've been taking oxycodone about once a day when that area gets particularly uncomfortable.

Colace (shiny, red and white): Stool softener. Helps counteract the constipating effects of oxycodone and reduces discomfort during bowel movements.

Simethicone (large, white, circular): Anti-gas tablets to reduce cramping when Xeloda upsets digestion.

Paxil (tiny, orange): Antidepressant. I used to suffer from associative nausea; whenever I went to or even thought about my chemotherapy clinic I would feel like vomiting. The antianxiety effects of Paxil make me feel a little calmer and greatly reduce associative nausea. As is typical with serotonin reuptake inhibitors, it also suppresses my ambition and libido somewhat.

Norvasc (white, angular): A popular anti-hypertensive to counteract the high blood pressure triggered by Avastin.

Oh yeah, I also get an infusion and an injection during my biweekly chemotherapy clinic visits:

Avastin: Deactivates the body's vascular endothelial growth factor to prevent blood vessel growth and starve the tumors.

Aranesp: Promotes the growth of red blood cells to counteract fatigue.

Two of these medication are actively fighting the cancer. The other nine are needed to treat the side effects. It's tiresome to take so many pills, but I'm impressed that oncologists have so many tools for minimizing the illness and suffering from chemotherapy.

Thursday, March 22, 2007

Colostomy

After the surgery to remove the primary tumor in my sigmoid colon, I was left with a colostomy. Normally the digestive system goes: mouth, esophagus, stomach, small intestine, colon, rectum and out. My metastatic tumors threatened to grow back into my colon if it was reattached to my rectum, so instead the end of the colon was brought through the abdominal wall to exit near my belly button.

That meant that I could no longer go to the bathroom in the usual way. There was no sphincter to control bowel movements, so stool spontaneously exited through the stoma as it reached that stage of digestion. I had to wear a plastic pouch to collect the stool; it clipped onto a flange that adhered to my belly like a big bandage and had a clip at the bottom so that I could empty it a couple times a day.

On the upside, one doesn't have to worry about finding clean public restrooms around town when one has a colostomy. That can be liberating for someone who's had trouble with frequent or sudden bowel movements. On the downside, the colostomy needs care, the adhesive can be irritating to the skin, and its presence is socially awkward. It made a visible bulge under my shirt, the lack of a sphincter meant that I couldn't control the sound of passing gas, and it required explaining to anyone who was going to see me shirtless.

I developed a few tactics to minimize the disruption of my lifestyle:

Basic colostomy bags are clear, smooth plastic, but I found that Hollister makes opaque, beige bags with a cloth-like cover. That helped greatly in reducing the visual impact of having a bag of shit hanging from my stomach. The cloth-like cover kept the plastic from getting sweaty and sticking to my skin.

I started wearing white undershirts to help hold the bag close to my body and make my outer shirts lie more normally. A big contributor to the bulge is gas collecting in the sealed bag. I switched to bags with small carbon-filtered vents that let the gas exit odorlessly during the day.

I eventually learned to wear a belt attached to the bag at night to hold it tighter against my skin in bed. That kept the adhesive from peeling off and let me go about five days between changing flanges. Since peeling off the adhesive was a big contributor to skin irritation, that reduced both leakage and discomfort.

After learning to care for the ostomy, my activities were nearly unrestricted. I had to avoid bending too much at the waist and stopped swimming, but everything else I could do normally.

Monday, March 19, 2007

Surgery


I had surgery to remove the tumor from my colon on August 17, 2004. The surgeon said it was likely that the remainder of my colon could be reattached and function normally, but there was a chance that instead I would have to wear a bag to replace the function of my rectum. Eww, I thought, but I felt confident that the surgery would go smoothly and I wouldn't have such a fate.

I was scheduled to go into the operating room in the morning, but due to delays with other patients I didn't get out of the waiting area until late afternoon. I was feeling pretty weak since I hadn't eaten solid foods in two days and had nothing at all since midnight. It was so late that after I was taken to the preparation area there were no more nurses or attendants around. Eventually my surgeon came looking for me and had me moved to the operating room. Things were not going smoothly.

The next thing I remember was waking with terrible pain in my abdomen. I heard my mom talking to the nurses and pressing them to give me more pain medication. Eventually they gave enough to take the edge off -- apparently many common pain killers don't work well on me and I need unusually high doses to get relief. The anesthesiologist had also managed to knock the crown off my front tooth while removing the breathing tube. Again, things were not going smoothly.

Once I was more comfortable my mom asked if she could go back to the hotel since she was very tired. It was around 10pm by now, but it seemed strange that she wouldn't stick around for a little while. I suspected that the news from the surgery was bad and she was having a hard time hiding her reaction from me.

I don't remember whether I got the news that night or in the morning. The surgeon removed the primary tumor but it had already ruptured the intestinal wall and spread dozens of quarter-sized tumors throughout my abdomen. He said tumors like that were beyond his power to remove. My only hopes were chemotherapy and a radical new surgery being tried at the National Institutes of Health.

He had also been unable to reattach the good part of my colon back to my rectum. So the end of my colon was now routed out near my belly button and emptying into a plastic bag. I was not ready to deal with that. The hospital sent an ostomy nurse to teach me how to care for the site but I couldn't watch. Fortunately my mom was there and learned enough to guide me after I was sent home.

My recovery was painful but rapid. Dealing with the ostomy was icky, tricky, and embarrassing. But two weeks later I was able to tour around DC and get drinks at the Sculpture Garden with my sister. Then I flew to Michigan for a couple more weeks of recovery before starting chemotherapy.