Flashbacks

One of the major side effects that chemotherapy has had on me is chemobrain, especially in the aspect of memory impairment. I have a hard time remembering what tasks I have for the week. I write down lists and appointments but that doesn't help much since I don't remember that I've written them down. I just come across the slips of paper and notes in my planner and realize "Oh, yeah, I was supposed to do that yesterday." I have trouble recalling conversations I had a week ago or the plot of a movie I watched recently.

But as my abilities of intentional recall have faded I've become much more aware of unintentional recall. A scent or a sound or a position of my body will instantly remind me of a situation I experienced years ago. The smells of certain papers and inks transport me back to sixth grade science class, sitting at my desk in that windowless room and opening a new textbook. When I was in Michigan earlier this month, the smell of the first grass cutting of the year reminded me of a summer spent at my grandparents' farm along with all the related visions and experiences.

The smell of a certain kind of rubber reminds me of riding an elevator up to my oncologist's office for another dose of chemotherapy and instantly turns my stomach. Walking down the hallway to the bathroom at work reminds me of days when I felt sick and months when going to the bathroom meant opening an ostomy bag and squeezing out the feces.

Hearing snippets of a Muppets song reminds me of a commercial that played while I was in the intensive care unit, along with the feeling of my body in the hospital bed. And the taste of water from my Thermos cup. And the view from my darkened room into the yellow-lit hallway. And the routine of daily X-rays in the morning. And the feel of a blood oxygen monitor on my finger. And the sound from racks of instruments behind my head. My voluntary access to memories is disrupted, but brief sensations can release a torrent of recollections.

It's springtime in Washington, DC with a sprinkling of summer-like days. Many memories are triggered by the smells of blooming plants, the vision of greening foliage, and the angle of sunlight at this time of year. This will be my fourth summer in DC; before that all of my other summers were spent in various parts of Michigan or Missouri. So when environmental sensations trigger memories there is a limited number of experiences tied to these sights and smells.

One summer ago the return of my cancer was being diagnosed and I began a round of chemotherapy that made me feel awful. Two summers ago I was undergoing an enormous and complicated surgery, leaving me hospitalized for one month and struggling to heal for many months after. Three summers ago I was feeling sick, going through the tests that eventually diagnosed my cancer, and undergoing the first normalcy-mutilating surgery.

Until recently I was taking the anti-depressant drug Paxil to help suppress what the doctors call associative nausea. I wanted to try getting off of it to see if I could regain some of the mental sharpness and ambition that I feel I've been missing. My good days have felt better since stopping the drug, but these flashbacks are coming much stronger and more frequently.

Radioactive man

I am radioactive man. At times, at least. About every six months I go to a specialized radiology clinic to get a positron emission tomography scan. After starving myself overnight, the technician removes a syringe full of fluorodeoxyglucose from a lead box and injects it into my arm. The glucose-hungry parts of my body such as brain, kidney, and cancer cells consume the fluorodeoxyglucose for energy.

The fluorine (colored green) in fluorodeoxyglucose has an extra neutron, making it unstable and prone to radioactive decay. Every 110 minutes, half of the fluorine atoms emit positrons to transmute into stable oxygen. The positrons zip through my body for a few millimeters until each collides with an electron. Upon collision the positron-electron pairs of particles annihilate each other and emit two gamma rays moving in opposite directions.

During this time, I lay on a mechanized platform that slowly slides me through a detector tunnel. As the gamma rays shoot out from my body the detector notes their position and trajectory. Then a computer compiles the data and constructs a three-dimensional map of the metabolic activity in my body.

I don't feel anything physically except for hunger and muscle cramps from lying still for two hours. But I like to imagine that all of the X-rays, gamma rays, and poisons are imbuing me with super powers.

Hospitalization

I have had three lengthy hospitalizations for my cancer treatment: 3 days for the removal of my primary tumor and creation of a colostomy, 8 days for the reversal of an ileostomy, and more than 30 days for the big surgery to remove my peritoneum and all visible tumors on the organs.

Most of my hospitalization time was spent at the National Institutes of Health Clinical Center. It's a fine institution that serves as the site for trials of new therapies. The building sits in the middle of a large, busy research campus and features a multistory atrium near the lobby.

I stayed on the floor dedicated to surgical oncology. Some of my floor mates were there for the same reasons as me; many others were there for trials involving immunotherapy and had to live in isolation. The patient population there was generally younger than I saw in other hospitals and cancer clinics. They seem to like getting young, strong subjects for their surgical trials since those patients are less likely to suffer from extra complications like heart disease or diabetes. But there was also a population of older, sicker patients. Some of the trials at NIH are in the early phases and little is known about their safety or effectiveness. This is where patients with no more options and little chance of survival go for one last shot at a cure and a contribution of one's own living body to medical research.

A typical day as a patient in the hospital began with a nursing assistant waking me at 6:00am to take vital signs and a weight measurement. Getting out of bed and standing on a scale is hard work for somebody who recently had their belly opened and all their organs poked and sliced. It often left me panting for breath, so maybe getting a little exercise is part of the purpose behind that routine.

The next activity is doctor's rounds at 7:00am. Sometimes I'd order breakfast of yogurt, juice, and cereal while I waited or else I'd watch the early morning news. I liked to be awake when my doctor came by. He would be accompanied by an entourage of senior doctors, medical residents, medical students, and specialty nurses. The doctor in charge of my care would stop outside the door of my room, give a brief background and update to the entourage, and then come in to look, poke, and question the condition of my body. I tried to put on my strongest face of the day — the better I looked the sooner they would let me go home. It was also a good time to ask questions of the doctors and address any problems I was experiencing.

Shortly after the main doctors on my case visited I would often be seen by doctors and staff in auxiliary specialties: pain management and palliative care, physical rehabilitation, psychiatric care, clergy. This is one area where an excellent research hospital really outshines a standard hospital. These people all became familiar with my case, visited often without my needing to request attention, and saw that other parts of my body and mind beside the surgical site were healing.

My mother went on family medical leave from her medical practice to take care of me during my longest hospitalization. She would usually get to the hospital around 11:00am to help bathe me. It's embarrassing to have to rely on one's parents for basic bodily care as a 30-plus year old. But I just wasn't physically capable of filling a tub of warm water and washing all my bits. If my mom were away for the morning then the nurses would help a little in getting me set up with water, soap, and towels. But that meant I was restricted to what I could reach and often had to skip extra steps like washing my feet and powdering my back. Either way, a daily bath would leave me exhausted and I would finish by half napping through a show of The Price Is Right.

During the day the main orders of business were eating sufficient calories and getting up for walks around the floor. Patients and their families got to know each other since many of us were long-term or repeat residents. There was a nice sun room at the end of the floor with sofas, tables, TV, a computer, games, and puzzles. It provided a healthy change of scenery for patients, a place for visitors to retreat when the doctors need some time alone with a patient, and an environment for socializing with fellow patients and visitors. I don't think it's common, but all hospitals should have rooms like that.

My mother also served as an advocate for my health care: tracking down nurses when I needed one, questioning the doctors and pushing for treatment of problems like pain management, and helping to keep me sane by remaining as a link to my normal life. My girlfriend visited me every day — she taught a class in the evenings so she would get to the hospital around 10:00pm and stay for an hour until I fell asleep. That was beyond official visiting hours, but fortunately most of the nurses knew her and me well enough not to give us any trouble.

One hard part of hospitalization is loss of control. My waking time was dictated by the nurses and doctors. Every urination and bowel movement was handled and measured by the nurses to measure my intake/output balance. I was ordered to take pills and had to swallow them while the nurses watched, regardless of whether I was sleeping or feeling nauseated when they came. If I needed medication for pain or nausea I had to call a nurse and wait for the order to get filled by the pharmacy. I depended on nurses or visitors to refill my water cup and on the often unreliable kitchen staff for meals. There were computers in the rooms, but I didn't have the energy or attention span to use them. I was wearing humiliating gowns or, when I was lucky and they had a pair in my size, pajamas. But I couldn't choose the color or pattern. I couldn't open a window or turn up the heat in my room. During my ileostomy reversal I had a roommate and therefore lost privacy and control over noise.

Even the best of hospitals feel more like prison than home. They are also just as likely to make you sicker as they are to make you better. My advice to the loved ones of hospitalized patients is to continue to visit them, send cards and flowers, and advocate for their care. The doctors will attend to the disease, but friends and family are invaluable for supporting the rest of the patient.

Exploratory surgery

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

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

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

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

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


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

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

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

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

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.