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.

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.

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.

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.

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.

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.