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.

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.

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.

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.

Diagnosis: Cancer

On Christmas Eve, 2003 I went to the bathroom and had a very bloody bowel movement -- much more than I had seen before. I thought about going to the emergency room but realized that it wasn't enough to be immediately fatal. I could call my family doctor, but there was a problem:

I had just defended my doctoral thesis at the University of Michigan and was about to move to Washington, DC the following week to start a prestigious fellowship at the National Institute of Standards and Technology. If I called the doctor then I would have to go through a long series of office visits to diagnose the problem. But my medical insurance in Michigan was about to expire and if I didn't get to NIST by January I would lose my fellowship. So I decided that if the symptoms didn't continue or worsen I would wait until getting a new doctor in Washington.

The bleeding stopped after a day and I thought maybe it was a one-time occurrence. But it returned a few weeks later and recurred on-and-off over the next few months along with bouts of nausea. By June I was settled into my new job and, after changes to my diet to rule out a reaction to certain foods, made an appointment to see my new doctor.

His response was similar to my previous doctor's. The bleeding was probably from something simple like an anal fissure or hemorrhoids. He did a digital exam, found nothing, and sent me home with an occult blood test to check whether I was bleeding even when there was no visible blood.

That test came back positive, so he said that I should see a proctologist for further investigation. The proctologist did another exam and decided that we needed a colonoscopy to see what was going on. I was still 20 years younger than the recommended age for regular colonoscopies, so he expected we'd find something easily treatable like internal hemorrhoids or maybe irritable bowel syndrome.

I had to return to my family doctor for a heart and lung exam since I was going to be sedated for the colonoscopy. My doctor was booked up, so I saw an older doctor instead. Passing the physical was no problem since I was young and otherwise healthy. He reassured me that at my age the colonoscopy wouldn't reveal anything scary like cancer. That'd be a one-in-a-million chance and worthy of a report in a medical journal.

So I went for the colonoscopy expecting to find a benign or easily treatable cause of my bleeding. The preparation wasn't as bad as I feared -- I drank some tasteless powder dissolved in a large bottle of Gatorade and spent most of the evening going to the bathroom. It wasn't accompanied by cramps like regular diarrhea, so it wasn't as unpleasant as it sounds. I checked into the clinic, got an IV for the sedation, and was wheeled into the procedure room.

The next thing I knew I was woken up by a worried-looking nurse in the recovery area. She told me that I still had five good feet of colon and I would recover just fine. (Recover?! What's wrong with the rest of my colon?) Then the anesthesiologist came by looking dour and expressed his sympathy. I was still groggy from the sedation but knew something bad was up.

A few minutes later I went into the counseling room to meet with the doctor in private. He said the results were not good. They found a two-inch tumor in my sigmoid colon, just above the rectum. It was ulcerated and nearly blocking the passage. He showed me pictures from the colonoscopy which really helped me appreciate how bad it looked and understand that it was a real problem despite the fact that I otherwise felt pretty healthy.

He said that I would need surgery to remove a section of colon and sent me home with a list of tasks: schedule the surgery ASAP, get authorization from my insurance company, and get a blood test to check for cancer proteins. We didn't know for sure that the tumor was cancerous, but the doctor would proceed as if it was. My first question was: "Will I be able to take the trip to Italy I have planned in three weeks?". I guess denial really is the first stage of grief.

So I rode home with a friend, in a daze as I processed the expectation that I had a cancerous tumor. I called my mom, a doctor, to tell her the results and she made plans to drive down to Washington for the surgery. I had to make arrangements at work for my absence and realized that I didn't know how to deal with this diagnosis. I often laughed as I explained the situation to coworkers. It was so unexpected that it felt comical.

The colonoscopy was on August 12, 2004 and the surgery would be on August 17. I kept busy with preparations and went for a hike in Great Falls Park with a girl I had just started dating the previous week. I kept the news secret from her so that I could enjoy one more day of normalcy before the surgery.

Before diagnosis

I am a scientist and artist. I graduated from Michigan State University with a degree in Chemical Engineering in 1995. I worked at Ford Motor Company as a Manufacturing Development Engineer from 1996 to 1998. While researching new painting technologies for Ford, I noticed that all the cool research jobs were held by people with PhDs. So in August 1998 I quit my job and enrolled in graduate school at the University of Michigan in Ann Arbor. I earned my PhD in Chemical Engineering in 2004. My research was computer simulations of the growth of silicon germanium quantum dots.

I have enjoyed science since I was a little kid. I always loved going to science museums, playing with chemistry sets, building models, programming computers, and watching science documentaries. I thought that everybody had the same interests -- I didn't realize until high school that my interests and talents in science were noteworthy.

I have also always loved art and music. When I was young I listened to my father and sisters play piano and violin and tried to play myself. Later I studied violin and took art classes, doing well enough that my high school art teacher encouraged me to study art in college. I did take several art classes at Michigan State -- my sculpture professor noted that my kinetic art creations were exceptionally well engineered -- but ultimately I decided that a degree in chemical engineering would be better defense against starvation. While working at Ford I continued to paint and in graduate school I made friends with other art fans. We cofounded the University of Michigan Public Art Underground Society (UMPAUS) and created several projects including Project Easter Bunny.

While in graduate school I also started developing digestive problems. In 1998 I started seeing bright red blood in my stool. That's the sort of thing that health advisors always warn about, so I saw my family doctor. He said it was probably just irritation due to spicy foods and nuts: change my diet and it would go away. I made the changes and still had the symptom, so I went back to see him two more times. He did digital exams of my rectum to look for hemorrhoids and found none. He suggested that it was probably harmless anal fissures; come back if my symptoms changed but otherwise don't worry about it. I kept getting the feeling that the doctors thought I was a hypochondriac or that my problems were self-imposed by doing perverted sexual things. So I stopped bothering the doctors and just lived with the (painless) bleeding.

In 2000 I started having debilitating nausea. I would feel sick to my stomach most of the morning and afternoon every day. It eventually got bad enough that I could barely eat and couldn't concentrate. I stayed home from school most days and layed around trying not to vomit. I saw the doctor repeatedly. I was told to avoid spicy foods, caffeine, and stress; I did but the symptoms continued. I was checked for the bacteria that cause ulcers but none were found. I was prescribed various anti-ulcer medications; none helped until I tried Prilosec and the symptoms slowly went away. When I stopped Prilosec they returned, so the doctor sent me for an upper gastrointestinal endoscopy. They didn't find anything visibily wrong with my esophagus or stomach, so the doctor said there was nothing seriously wrong with me. Continue taking Prilosec as needed and I'd be fine.

These health problems had a big impact on my personal life. I wasn't getting much done at school since I was so often sick, and I felt isolated from my friends since I rarely felt well enough to go on social outings. I had been dating a fellow chemical engineering grad student for several months. During the months when I was feeling the worst we had problems related to my ability to engage in boyfriendly duties like social activities and romance. We had an argument after a movie one night and she left my place in tears. I felt too sick to patch things over, so I let her go. What began as an argument transformed into a breakup and we never returned to the close friendship we had before.

That was a couple months before I discovered that Prilosec would control my symptoms. Eventually I started feeling better, returned to my usual activities, and after much hard work finished my doctoral dissertation. I resolved that I just had a sensitive digestive system and if I could manage the symptoms I would have an otherwise normal life.

Introduction

Hi, my name is Rick. I am a 33-year-old living in Washington, DC. In August 2004, at the age of 31, I was diagnosed with colon cancer. Since then I have been through surgery, chemotherapy, immunotherapy, and radiation to treat the disease. I am currently on my third course of chemotherapy and the initial signs are that it's helping to suppress the cancer.

I am starting this blog to tell my stories of what it's like to live with cancer as a young adult. It can be a lonely situation -- people don't expect to get cancer at a young age. So for one thing it's a total surprise and forces you away from whatever plans you had for adulthood. But beyond that one's peers haven't experienced cancer themselves or among their friends before, so they often don't know how to relate to you as a cancer patient.

My intention is to help guide those who are dealing with cancer in young adulthood, either as a patient or as the friends and family of one. And I hope to connect with others out there who are going through this experience. My stories will be personal; they might not be what you or the average patient should expect. They might also be graphic. I grew up in a family of doctors so I'm fairly comfortable discussing bodily functions. Dealing with cancer treatment has forced me to become even more casual in managing and discussing the sometimes icky things that bodies do.

I will update this blog from time to time with stories of how I got to where I am today as a 2-1/2 year and counting cancer survivor. And I will update it with new stories of how cancer is affecting my life. I hope to spark some degree of enlightenment as we go along.