State of the Body

I figure that my 37th birthday is a good time to take inventory of the state of my body. It's gotten more complicated with accessories lately to compensate for damage done by the cancer (and friendly fire from the treatments).

Left shoulder


I've had a mediport since shortly after diagnosis in 2004 to make it easier to get chemotherapy. Instead of going through arm veins, I have a metal disc placed under the skin with a tube leading into the largest vein entering the heart. This saves the smaller arm veins from being burned by the drugs and simplifies the poking needed to get an IV line going.

Recently I upgraded to a two-disc port so that I can have two IV lines running at the same time without worrying about whether the drugs are compatible for a single line. The bottom line is now devoted to intravenous feeding. I have a small bowel obstruction that prevents food from completing its passage through my digestive system. So anything I try to eat comes back up, accompanied by terrible cramps and nausea. I lost forty pounds while we tried dietary changes to sneak something through the obstruction, but nothing helped. So since I can't eat anything, I'm not receiving total parenteral nutrition (TPN). Every night I get hooked up with a two-liter bag containing all the essential nutrients, and the contents are infused for twelve hours then disconnected in the morning.

The second mediport is being used for continuous infusion of 5-FU. My CEA is sky high again, so we started this chemotherapy to try shrinking whatever tumors are around and hopefully reopening my bowel to digestion. I've done well on 5-FU-based therapies in the past, so perhaps this will work well. I carry a portable pump that infuses the drug very slowly, twenty-four hours a day for four weeks in a row.

Belly

Since anything that enters my small bowel gets pushed back to the stomach for emesis, I had a gastrostomy tube installed to let those contents drain without the unpleasantness of vomiting. I can pop open the tube to let the stomach contents drain by gravity, or I can hook up a non-portable suction pump to pull out the contents and try to relieve cramps and nausea. It's been somewhat successful, but it can be painful, leaky, and an annoyance to care for.

Below the G-tube is my colostomy. I used to think that having an ostomy was a terrible burden in itself, but compared to my newer accessories it's actually fairly simple and habitual to care for. There's not much output of stool since my small bowel is blocked. It's mostly just fluid that the small bowel produces to try clearing the blockage. The biggest annoyance is managing my weekly wafer change with all the other tubes flopping around and tying me to various pumps.

Pelvis

After all the radiation I received, there's not much left working in the pelvis. I can barely feel by bladder, so I have to go to the bathroom regularly during the day to avoid leakage. When I'm sleeping I can't feel the urge at all, so I have to wear Depends pads to catch the leakage. Still, there are accidents when the pads aren't positioned just right or if I fall asleep before putting them on. So I have a big stockpile of pajama bottoms to change into whenever I have an accident.

The sexual function of my penis is pretty non-existent too. I haven't had an erection in months, and the last ones I had were with the help of Cialis. My libido is at zero right now too, probably due to the starvation that led me to needing the IV feedings. With all the tubes I have dangling from my body now, I don't think I could use an erection if I got one.

Summary

It takes a remarkable amount of work and technology to keep me alive and comfortable now. Actually I'm not very comfortable, still suffering from lots of abdominal cramps, nausea, and vomiting. We're trying various medications and drainage techniques to alleviate those. Oxycodone has been a friend to at least ease the pain. But the nausea and such is still too much to let me read, write, or drive comfortably.

I'm still processing the losses that these changes have brought. Being unable to eat is an enormous blow to a common source of happiness and a ubiquitous social activity. I imagine it's possible to live without eating, but it seems to be far from a normal existence and will be a challenge to accept. The mess of tubes and loss of penile function is a blow to any romantic interaction. And the burden of maintaining all these accessories and their functions is a drain on the limited energy I have left. My goal is to at least find fulfillment in work and intellectual activities. But at the moment those are beyond my capabilities.

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.

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.