175,000 calories

I had surgery on August 3rd and the doctor successfully bypassed my bowel obstruction. The problem was mainly radiation damage to a section of small intestine, rather than a bellyful of tumors like almost every doctor assumed. In fact, he couldn't find any new tumors in my abdomen. So now I can eat again!

115 Pounds (August 2010)

I am terribly thin, though. During the months of starvation I lost about 50 pounds from my previous weight of 165 pounds. And while on intravenous feedings I barely maintained what weight I had left. So the doctor's orders are to gain those 50 pounds back.

Since it takes 3,500 calories to gain one pound*, that means I need to take in 175,000 calories above and beyond the 2,500 calories per day it takes just to maintain weight. If the doctor wrote a prescription for all those calories, it might look like one of these:

• 650 McDonald's hamburgers
• 1,200 Stonyfield Farms Strawberries & Cream yogurts
• 1,500 Quaker Chewy Chocolate Chip granola bars
• 4,400 Thin Mint cookies

It's a bit of a struggle to eat all those calories right now. With the shortened digestive system and organs that aren't used to seeing food, whatever I eat tends to pass through quite quickly. Some meals seem to exit into my colostomy pouch in just 12 hours – not much time to absorb all the calories and nutrients. And my stomach has shrunk from months of disuse, so I can't eat much at a time to begin with.

But I'm tired of looking like a skeleton, so I'm working at putting on weight – eating whatever sounds good and getting some light exercise walking and playing Wii.

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.

Bowel obstructions

I haven't been eating well. On New Year's Eve I bought a bunch of snacks to eat while we waited for midnight, but after a couple slices of pizza around 7 o'clock I was full and my appetite didn't return in time to enjoy all the munchies.

A few days later I had terrible abdominal cramps. I've had them a few times in the past several years and found they were caused by intestinal blockages. What happens is that some stool in my colon gets too dry and hard, digested food backs up behind it and the cramps are failed attempts by the intestines to push it all out. Those episodes were solved with saline enemas, so I tried that again, got things moving, and felt better.

But a few days later it happened again. I'm afraid that it's harmful to do frequent enemas (and it's tricky to do enemas without a rectum), but I administered another one and cleared the problem again.

The obstructions kept repeating. Now I didn't have feelings of constipation, just bloating, intestinal gurgling, and nausea. Rather than ending with a stubborn bowel movement, these episodes ended with vomiting.

Such problems are common with patients like me. Abdominal surgery, chemotherapy, and radiation can all lead to scars and inflammation that prevent the intestines from moving normally and resulting in obstructions. My doctors recommended managing the problems through diet – low fiber, low residue, stool softeners, avoiding bulky foods like raw vegetables or nuts.

Yet the obstructions continued. I went to the emergency room, and after a CT scan they diagnosed me with a small bowel obstruction. They put in a nasalgastric (NG) tube to suck out the stomach contents so the bowels could rest for a few days. During five days in the hospital, they transitioned me back to soft foods and sent me home. Then just a day later I obstructed again.

I was getting desperate since I was losing weight rapidly and wasn't accomplishing anything in my life except struggling to eat, feeling sick, lying on the couch, watching TV, and waiting to get better. So I contacted the abdominal cancer specialists who did my big surgery in December 2008 to see if they had any solution.

They were reluctant to operate since they said it's very risky to operate on someone with such an extensive history of treatment as me. If the root cause is scars from previous surgeries, then another surgery is as likely to cause new problems as to fix existing ones. And the doses of radiation since my previous surgery could change the tissues and prevent them from healing properly.

But I couldn't simply continue failing to eat and losing weight, so they admitted me to their hospital to prepare for surgery. I went on a clear liquid diet plus Ensure (a nutritional supplement drink) while we did some gentle bowel preparations over the course of a few days. We also tried putting me on total parenteral (TPN) intravenous nutrition for three nights. During that week I didn't obstruct again, so the surgeons decided it was better to send me home on a diet of Ensure and go searching for an effective chemotherapy. From their perspective, if I could live without surgery it was better not to risk it.

So I continued that diet at home (without TPN) yet continued to lose weight. I added some simple foods like crackers and low-residue cereals which certainly helped stimulate my appetite. But then I began having episodes of obstruction again and continued to lose weight.

My radiation oncologist doubted that these obstructions were symptoms of his radiation treatment, so the prime suspect has become cancer itself. I met with a team of doctors at NIH about enrolling in clinical trials, but most of their drugs are oral so my inability to eat reliably makes me a poor candidate.

December 2009

April 2010

In April my medical oncologist finally decided that we had to do something other than let me continue to starve and wither, so we started chemotherapy with continuous intravenous 5-FU.

So far I've received two weeks of chemo and tolerated it okay, but I'm continuing to suffer obstructions and lose weight. I fear that we'll have to take more drastic steps to get nutrition if this continues. We might set up for home TPN, receiving intravenous feedings at night. But that sounds like a lot of work and inconvenience, making me even more homebound and preventing me from engaging in the travels that are so important to my happiness.

Currently I'm trying the medication Reglan to try getting my intestines to push in the right direction and allow me to get enough nutrition the old-fashioned way.

I want to eat.

Life lost

By early 2008, I had endured 18 months of chemotherapy with Xeloda. My CEA was down to normal and my scans were clear. When my CEA came back up a bit, we decided the chemo had done all the good it could and it was time to set me free. We would just watch closely and hope that cancer would stay away, at least for a while.

It felt great to get away from the grind of chemo. I didn't have to plan my activities around good weeks and bad weeks. I didn't have to avoid favorite foods on chemo days to prevent making bad associations. I had more time and energy, my mind was clear, and I could plan for the future: projects to accomplish, advancing my career, traveling around the world, and pursuing romance as a normal man.

Just a few months later I got bad news. My CEA was not rising gradually but shooting rapidly into the danger zone. And my scans showed new growth – a tumor had resisted all the chemo drugs and was expanding without restraint.

I cried upon receiving that news – something I had rarely done through all my dealings with cancer. The physician's assistant assured me that the doctors had not given up on me; there were still more treatments to try. She must have thought that my tears were from a fear of death. And I should take comfort that there might still be ways to avoid that fate.

But really I cried for the loss of life. The loss of living. I knew that returning to treatment meant more hardships from chemotherapy, the loss of time, and the loss of vigor. Death is inevitable and I do not fear it, but I have things to do before it comes. I cried because I was losing those plans for my future – productivity, strength, happiness, love.

We eventually fought that recurrence with surgery. And when we found that some remnants had survived, we scorched them with radiation. I have been living free since then – watching closely, hoping for a long break from cancer, and planning for the future.

But now my CEA is back in the stratosphere. Though we haven't identified a specific tumor on scans, I have been experiencing bowel obstructions and greatly increased pain. It seems that cancer is back in my life and ready to fight.

I start a new course of chemotherapy on Monday.

Uncertain health

Last summer I wrote about my rising CEA levels as I searched for the best treatment option:

Those fiendish cells

Now that I've finished another round of radiation and had some time to heal, I have another update on my CEA timeline.


My CEA fell after radiation, but not fast enough to suggest that it was heading back down to normal levels. Now it looks like it's rising again, indicating growth of tumors somewhere in my body. As usual, variability in measurements and benign conditions could also cause a rise in CEA. But it's enough to put us on closer watch for any bad guys.

My scans in December were too messy to declare anything definite. The masses in my pelvis showed elevated metabolic activity, but that could be from the radiation itself. The best news was that nothing new was showing up there. My lungs, however, showed some nodules that could become problems in the future.

Overall I'm feeling pretty good. I have a variety of nuisance symptoms including lingering bone pain, fatigue, urological misbehavior, and a fussy tummy. But I'm trying to press ahead with normal life and hoping that I can avoid or overcome any further problems.

Planning for the future is tricky with such uncertain health. As long as my body keeps running my mind must find ways to keep it fed, sheltered, and repaired. Financially, I'm faced with two choices: find a way to earn enough money to live where I have professional, social, and medical opportunities; or give up work completely and find a quiet place to retire and expire.

I am heading down the first path, committing myself to be productive and engaging in the activities that are sensible if I have a long future. But I am becoming familiar with a stress that's characteristic of chronic cancer – the knowledge that disaster could strike again any day and spoil my best laid plans.

Unenlightening

I am now three months post radiation therapy, which was given as followup to a big surgery, which was followup to chemotherapy, which was followup to earlier radiation, which was followup to a previous massive surgery, which was followup to the first round of chemotherapy, which was followup to the first surgery, which was followup to finding a scary tumor during a colonoscopy, which was followup to years of telling doctors that I had rectal bleeding and nausea.


So I had another set of PET/CT scans to see how successful this has all been and check whether I need to follow up with yet more treatment. There are a few reports that one might expect at this point:

Enlightening

You are healthy and we don't see any problems. Go home and enjoy the holidays!

You have a problem here. Let's get moving on taking care of it.

Unenlightening

You might have problems, but we don't know what they are. They might get worse. We can't do anything if they do. Maybe somebody else can, but who knows? Enjoy the holiday!

I got the unenlightening report this time. Having seen my own scans, I realize that it's too much to expect a clean bill of health. I'm such a mess inside that it's beyond the capabilities of modern medical science to decipher just what's in there. The best gauge of how healthy I am is how I feel. But my worry is that I don't feel good enough to be in the clear.

Deferred maintenance

After skipping any visits to my dentist for three years, I've been giving him a lot of business in the weeks since finishing radiation.

Dental care is the kind of thing that gets neglected during cancer treatment. During times when I was undergoing chemotherapy and suffering from nausea, the last thing I wanted was to experience the sounds and smells of another medical office and to have people sticking fingers and instruments in my mouth. While I was recovering from surgery I was too weak and tired to spend my limited energy on something as easy to postpone as a checkup. And when I went through radiation, I was in too much pain to sit in the dental chair for an hour and too busy driving to the hospital every day to get zapped.

I had a couple breaks between treatments. When I finished a long course of chemotherapy in the spring of 2008 and hoped to be done with treatment forever, I started catching up on all the deferred maintenance of my body and my life. I had my hearing checked, got eyeglasses for the first time, had my car's tires rotated, began digging through piles of mail, and spent more time with friends and family. Unfortunately that break was short-lived and a few weeks later I was right back in chemotherapy trying to stop the growth of tumors that were advancing in spite of drugs that had decimated them before.


In the spring of 2009 I had the same experience. Just as I was recovering from surgeries enough to take care of domestic responsibilities and personal ambitions, a tumor stabbed me with pain and threatened my ability to walk. I had to put all of my personal care, job hunting, and travel on hold again to focus on fighting back against the cancer as quickly and strongly as possible.

It's easy to justify putting off tasks like dental care and clothes shopping when you're in survival mode. Do I really need to keep my teeth healthy for fifty years when my body is struggling to stay alive for one? Do I really want to spend my limited cash on a new suit or pair of boots when I'm not likely to have many chances to wear them? I'd probably rather spend that money on a good meal or a short trip – things that I can enjoy today.

What happens when you go through another battle, focusing on the moment, and then emerge on the other side (a bit to everyone's surprise) alive and productive again? My dentist told me when I returned after that long absence that when he first learned of my cancer he thought he might never see me again. When all of your strength and more is taken just to fight off death, you can be left unprepared for life.

It certainly takes a shifting of gears. I've heard that depression is common in cancer survivors. They get through treatment okay on adrenaline, determination, and lots of attention and support. You might expect them to have nothing to do but celebrate when treatment is over. But they can be left directionless, with a war to clean up after and time to finally realize just how much the battles have cost them. They might expect to feel normal and healthy but learn that the body doesn't heal all wounds the moment that injuries stop.

Then there's the lingering fear of recurrence. When we first put my cancer in remission, I hoped that was the end of an intense but brief battle and I was excited to face the future. When the cancer came back I was annoyed but ready to fight and hopeful that a new set of drugs would clear it out. After a couple more repeats of remission and recurrence, it's hard to get excited and optimistic for the future.

When I was in treatment I was doing something active to get better. But now I'm out of treatment and relying on my body to keep itself healthy. It's track record doesn't give me much confidence. I'm having a hard time reassuring myself that this remission will be any longer than the others.

I'm still trying to act as if it will be. To be cured seems too much to hope for, but a year or two without any recurrence would be a delightful change from the past several years. I certainly have plenty to keep me busy including deferred maintenance, relationships, travel, projects, and a career to resurrect.

CyberKnife

Today I finished a course of radiation with CyberKnife. The target was a tumor at the front of my pubic bone. The tumor showed up on PET/CT scans in May. It was a bit of a surprise since it wasn't noticed on previous scans or during my big surgery last December. Unlike the tumor near my tailbone it wasn't painful either and wasn't causing any notable symptoms, but we wanted to zap it before it did become a problem.

After getting CyberKnife to my tailbone and conventional radiation to the rest of my pelvis, I went to an interventional radiologist to have fiducial markers implanted. CyberKnife uses live X-ray imaging during treatment to aim precisely at the tumor, even if it moves day to day or with breathing and digestion (unlike conventional radiation which aims at a wider area based on landmarks on the surface of the body). For my tailbone, the bone itself and metal staples left from surgeries acted as beacons for aiming. But this tumor was in soft tissue so I needed tiny gold springs implanted with a long needle while I was sedated. Then, after waiting a week for the wounds to heal and the markers to settle, another CT scan located the markers relative to the tumor so that the CyberKnife could be programmed.

Two advantages of CyberKnife are that it is targeted more precisely and the targeting responds to internal movement. Another advantage is that the therapeutic X-rays hit the tumor from thousands of angles through the body, rather than just three angles like my conventional radiation treatment. That spreads the incoming X-rays more thinly across healthy tissue, causing less collateral damage.


The CyberKnife machine is set up in an isolated room next to the control station. There's a table to lay on that can lift, slide, and tilt. Detectors near the ceiling look at imaging X-rays cast through the body. And the treatment beam comes from a big box mounted at the end of a massive robot arm – the same kind used in automotive manufacturing plants.

Each day I laid down on the table, got positioned by the technician, and then kept still while the CyberKnife came to life. Despite its mass, the robot moved quickly and precisely. It looked like a giant bird, examining me from different angles to decide if I was edible. It almost tickled to see it moving over me, but it stayed at least several inches away and never actually touched me. If I moved more than a breath – to shift my weight or scratch an itch – the machine detected the movement and stopped. Then the technician checked on me, got me back in alignment, and resumed the treatment.

The actual radiation didn't hurt at all. The only way I knew anything was happening was from the mechanical and electronic noises of the machine. Most of the time I just closed my eyes, listened to my iPod, and tried to nap without moving. That's actually harder than it sounds, since my body prefers to fidget rather than lie perfectly still for a whole hour. During the treatment of my tailbone, it actually got very painful to stay so still because of how that tumor was deforming my muscles and nerves. But by the time of this treatment those problems were gone and the greatest hardship was mere boredom.

The whole course of treatment was five days of one-hour sessions. That's another advantage over conventional radiation which was a less convenient six weeks of ten-minute sessions. I haven't noticed any effects from the radiation yet, but I expect some fatigue, reddened skin, and local hair loss if it's anything like my previous doses.

Hopefully my blood tests and next set of scans will show that this summer of radiation has finally finished the job of last December's surgery and five years of chemotherapy.

Five Years

Today is exactly five years since my diagnosis with colon cancer. The statistics I faced then were a 50% chance of surviving two years and a 5% chance of surviving five.

Some mechanical highlights: surgical tumor removal and colostomy, chemotherapy, exploratory surgery, peritonectomy and continuously heated intra-abdominal chemotherapy, colostomy reversal and temporary loop ileostomy, ileostomy reversal, chemotherapy, radiation, more chemotherapy, more different chemotherapy, tumor reduction and continuously heated intra-abdominal chemotherapy, colostomy, and radiation (ongoing).

Some emotional highlights: time with friends and family, travel, productive work, creativity, games, movies, good food, live music, and new experiences.

The amount of support it took to get me through these five years (and maintain most of my sanity) is illustrated by this collage of just some of the get well cards my girlfriend gave me for nearly every doctor's office visit and treatment session during these years.

Those fiendish cells

The protein called carcinoembryonic antigen (CEA) speaks volumes about my battles with cancer. I wrote about it twice before:

Cancer quantified (2007)
Resurgence (2008)

Today I have an update tracking the concentration of that protein in my body over the past five years.

When chemotherapy stopped holding down the cancer in late 2008, I traveled to Baltimore for a heroic surgery to remove the two big tumors and apply heated chemotherapy drugs to kill any stray cells. My surgeon was pleased that he was able to remove the tumors without too much destruction, but there was one area at the back of my pelvis where he worried that some cancer cells might still be hiding.

So our plan was to let me recover from surgery and then follow up with chemotherapy or radiation to clear out that trouble area. The big drop in CEA in January 2009 shows that the surgery was effective in reducing the tumor load and a CT scan in February looked good (for a person who has been reassembled a couple times already).

In the following months my CEA climbed back up to the limits of normal (5 nanograms per milliliter), solidly abnormal (over 10 ng/mL), and now stratospheric (633 ng/mL). Scans in May showed a tumor at the back of my pelvis eroding my tailbone and another sitting on the pubic bone in front of my bladder.

I've spent the last few weeks scurrying to figure out the current situation and choose the best plan of attack. The leading contender right now is radiation, first to the tailbone and then to the pubic bone. I'm hoping that those areas are the only ones with cancer and that the radiation will be at least as effective as it was on my pelvic mass in 2007.

There are other options to consider too: Taking the chemotherapy drug Xeloda during radiation to increase its effectiveness. Trying another chemotherapy drug like Vectibix (which is related to the drug Erbitux which brought me much suffering and little benefit). Or entering a clinical trial to try re-engineering my immune system to attack the CEA-laced cancer cells.

The rapid rise in CEA and the sudden worsening of pain is spurring me to move quickly. I was looking forward to summer travel, more time with family, and gainful employment; but those plans are postponed now. The next stage of treatment – six weeks of radiation – is scheduled to start in five days.

Pain scale

Whenever I'm at a doctor's office or hospital, the nurses and doctors ask me to rate my pain on a scale of 0 to 10. Apparently pain is a common symptom among cancer patients. Over the years I have experienced different kinds and degrees of pain across the spectrum. And with that experience I have developed a guide to keep my assessment consistent from week to week.

Pain scale

0: No pain.

1 or 2: Noticeable pain. Not enough to be bothersome, but enough to be aware that some part of my body is unhappy.

3 or 4: Distracting pain. It draws attention away from normal tasks and causes discomfort. It is not unbearable, but I would prefer to treat it if possible.

5 or 6: Constant pain. I am continually aware of the pain and unable to concentrate on anything else without great effort.

7 or 8: Writhing pain. Pain that makes me moan, yelp, grimace, and contort.

9 or 10: Blinding pain. Unendurable pain, greater than what I could imagine under normal circumstances.


During most of my treatment the pain has fortunately been in the 0 to 2 range. I have had frequent excursions into the 3 or 4 range with problems such as proctitis or healing after surgeries. When the source of that pain is unknown it can be useful for finding a new problem, but if the source is known then I prefer to medicate to a level where I can function normally.

The tumor that broke my pelvis caused pain in the 5 to 6 range. The radiation to treat it caused rectal pain shooting as high as 8, which made me wonder whether the cure was worse than the disease. After a few months it improved into the range of 1 to 4 which I medicated when necessary.

I am not conscious of experiencing a 9 or 10, but I think I did in the hours and days following major surgeries. Strong drugs or trauma have erased those memories.

A big day

I'm coming up on one of those days that's common in the life of a cancer patient: a Big Day. On Monday I'll check into Mercy Hospital in Baltimore and on Tuesday Dr. Armando Sardi will attempt to remove my chemotherapy-resistant tumors and fry any stray cancer cells with a heated chemotherapy flush.

He told me to expect an average hospital stay of two weeks for this procedure and three months for full recovery. But I know from my big surgery in 2005 that complications could prolong that by at least a factor of three.

I don't know exactly what shape my body will be in after the surgery. I'll probably have a new colostomy. I might have a urinary ostomy. The previously irradiated section of pelvic bone will be removed if it's still harboring malignancy. The doctor might find that there's too much disease to treat when he opens me up and just leave it be. Or all could go wonderfully well and this could finally clear me of the cancer I've been wrestling with for more than four years.


How do you prepare for a day of such uncertainty? I spent extra time with family at Thanksgiving and celebrated some parts of Christmas early since I won't be able to travel to be with them. I have already finished wrapping presents for my girlfriend and my mother who will be in town with me. For my scientific consulting business I have made arrangements to work from home during recovery and put projects in motion to continue in my absence.

But it's hard to predict just what will happen beyond Monday. It's like driving on a strange road in thick fog. There are other times in life when we all experience such uncertainty: the first day of school, the first day of college, the first day at a new job or the first day in the military. Those are days like this where there's a known unknown, an experience which we'll look back at someday and appreciate what changed at that moment. Another big day.

The face of cancer – 2 years

Two years ago I began taking daily photographs of myself to track how my appearance changes as I battle with cancer. During that time I started a different chemotherapy, treated a bone tumor with radiation, knocked the cancer back into remission, finished chemotherapy, diagnosed a recurrence, started another chemotherapy, and found that these drugs that helped before are no longer stopping the cancer's growth.

I previously posted time-lapse movies of these self portraits at the 6 month and 9 month marks. Now I present two years of self portraits as a high resolution download or as a streaming video.



The early months were marred by the severe acne and hair loss from the previous ineffective chemotherapy. Since then I think my appearance has continued to improve even through the latest months of recurrence and unsuccessful return to other drugs.

The best plan of attack now is a big surgery to go after the tumors directly. So I am preparing myself through eating, exercise, relaxation, and planning for months of recovery. The break from chemotherapy at this time might show in the extra twinkle of energy and clarity I feel.

Resurgence

A year ago I graphed my CEA to show how that tumor marker tracked the growth and remission of my cancer. Now it's time for an update:


At the end of 2008 it looked like my cancer was headed toward oblivion as all of my tests were clear and I was feeling good (aside from the chemotherapy side effects). We continued Xeloda and Avastin for a few more months to be safe. My CEA came back up a bit but held steady within the normal range (below 5.0 ng/mL for a cancer survivor). As the cumulative side effects of Xeloda mounted we stopped that drug and planned to continue with just Avastin to keep any tumor growth in check.

A couple months later I had some pain and fevers that led to scans and a sigmoidoscopy which revealed a new tumor in my rectum and another nearby. So I went back on Xeloda, continued Avastin, and added oxaliplatin, an ingredient in the FOLFOX regimen which was my first round of chemotherapy in 2004-2005. The oxaliplatin made me feel awful, but for three months now my CEA has been rising.

So it appears that Xeloda, Avastin, and oxaliplatin have lost their effectiveness. Later this week I will get new PET/CT scan results and discuss plans with my doctor. The leading candidates to try next are mitomycin C (an older chemotherapy drug) and panitumumab (a newer relative of Erbitux, the drug that made me sick and ugly in 2006 but failed to stop my rising CEA at that time).

Symptoms of rectal tumor

Caution: This post deals with graphic details of colon cancer. It's probably of more interest to those experiencing such symptoms than to someone here to learn about cancer in general.

In the 2.5 months since restarting chemotherapy for my colon cancer recurrence I have noticed some new symptoms. Actually, they started a few weeks before the diagnosis and are part of what prompted the tests that found two new tumors, one inside my rectum and one in the adjacent soft tissue.

I often have a feeling of fullness in my rectum like I'm ready for a big bowel movement, but when I go to the bathroom I pass only a little bit of stool. Or sometimes I don't pass any stool but just a couple teaspoons of tan mucus. Whatever I pass removes the urge, but it doesn't seem like enough to produce such an urge in the first place.


Now that we know there's a 1-inch tumor in there, I think that it's crowding my rectum and leaving me 75% full all the time. Then when a little bit of stool comes along I feel like I have a lot. That happens 6 to 12 times a day, and I usually wake up 2 to 4 times each night to relieve myself.

Another problem is that it's gotten harder to pass gas. I used to be able to feel gas enter my rectum and then pass it through my anus, usually without a fart sound. But now it seems to collect further upstream, and when I push it escapes loudly. Or it stays trapped until I pass the little bit of stool blocking the exit. Sometimes after a bowel movement I think I'm done, but when I stand up things shift around and I realize I have a bunch of gas to pass.

The sensation of fullness has also made it hard to determine when I have just an exaggerated feeling and when I really do have a big urgent bowel movement. That's led to some close calls when I wasn't prepared to deposit the unexpected proceeds.

All of these new symptoms make me uncomfortable at times. Most of the day I'm okay and if I'm busy then I'm less aware of the sensations. But it's more difficult to be in a close social situation or away from easy access to a bathroom. I get some relief when I take the pain-killer oxycodone which diminishes the rectal discomfort and slows intestinal motion for a few hours.

It's kind of scary to have symptoms that seem to arise from the cancer rather than the treatment. I'm used to dealing with nausea, fatigue, hair loss, and chemotherapy-induced bowel irregularities. But having new problems due to the cancer which might continue to worsen unless we find a way to shrink the tumors is scary.

Second recurrence

In April my oncologist let me stop chemotherapy with Xeloda. My scans and CEA had been normal for six months and we hoped that I could remain disease-free without continued treatment.

It felt nice to be off of chemo, finally able to spend more time at work and play without the old two-week chemo ickiness cycle. I was still pretty tired and had lingering side effects, but I expected those problems to improve over the coming year.

One day in June I noticed a new pain or fullness in my rectum – nothing too surprising with all the surgery, chemotherapy, and radiation that it had been through. A few days later I developed a 101 degree fever that came and went for the next ten days. My oncologist prescribed an antibiotic and sent me for my three-month PET/CT scan as well as a sigmoidoscopy.

The sigmoidoscopy came first. My colorectal surgeon, the one who diagnosed my colon cancer in 2004 (to his own great surprise), said he saw another tumor like before. It was growing from the site where my colon and rectum were reattached, about an inch wide and beginning to interfere with the passage of stool. He also saw evidence that there was something outside the colon pressing inward.


Two days later I had the PET/CT scans. They showed a one-inch tumor at the reattachment site and a two-inch tumor in the adjacent soft tissue.

This news is very disappointing. Just as I was recovering from eighteen months of chemotherapy plus radiation and making plans for the future, it's all spoiled and I'm thrown back into treatment.

We are now trying oxaliplatin, a drug that was given as part of my first chemotherapy but which my body hasn't seen in three years. We're also throwing in Xeloda and Avastin again for good measure. My radiation oncologist wants to irradiate the tumors to prevent bleeding and protect my leg nerves from intrusion into my tail bone. We'll start five weeks of daily radiation in late August.

Aside from the nausea of my first dose of oxaliplatin I'm feeling pretty good. Energetic, clear headed, strong, and mostly pain-free. But I'm unhappy to be returning to the drag of chemotherapy, especially one harsher than before. And I'm worried that with no new miracle drugs these tumors will become resistant and my health will be all downhill from here.

Professor of Colorectal Cancer

I stumbled across an excellent colon cancer blog by Heinz-Josef Lenz, a scientific director and professor at USC/Norris. He writes about a variety of topics:

• Diagnosis (and commonly misdiagnosis in young people)
• Available therapies
• Clinical trials
• Cancer research
• Common symptoms
• Health insurance
• Issues for family and caretakers

There's lots of advice that I wish I had sooner and information that might be useful in the future.

Clean

My latest PET/CT scan and blood CEA were excellent. Everything is normal; no evidence of disease.

My doctor is considering three more months of chemotherapy just to be aggressive. But chemo also carries risk of further damage to my organs and more lost time from leading a normal life. The problem we have is that there is no medical evidence to say what to do in my situation.

Few stage IV cancer patients survive as long as I have. Of all the ways that people get colon cancer, mine is in the fraction of those that are hereditary, in the sub-fraction that's nonpolyposis, in the sub-sub-fraction that's not caused by one of the known genes for hereditary nonpolyposis. There's not much medical research available on such a rarity, just educated guesswork. The Xeloda + Avastin therapy that has worked so well for me was expected to just slow or shrink the tumors temporarily, not eliminate them completely.

I am hoping to finish chemotherapy by my 35th birthday in May. In the past four years, that is the one month that has always brought improvement and a break from treatment.

But I'm not as excited I might be expected to be right now. I'm very happy to stop chemotherapy and get back to some normalcy. But I'm still afraid that something bad will happen before I get there. Or maybe as soon as I go off chemo some hidden cancer cells will come zooming back.

I've been in remission once before, so I know better than to expect that I'm cured. I just hope for a long break from cancer and time for medical science to catch up. Maybe some months or years down the road I'll feel ready to celebrate, for now I'm just happy to get some time as my normal self.

On the cusp

My cancer treatment is nearing a milestone. In November I had PET, CT, and bone scans that were complicated but mostly clear. My CEA also reached normal levels. With clear tests and no symptoms my doctor declared the cancer to be in remission. Our plan was to continue chemotherapy and then scan again in a few months to see if any suspicious activity arose. If not we planned to finish chemo and hope for good health.

That next set of scans will be in two weeks. My CEA has bounced around a little between 1 and 3 ng/mL but is still in the normal range. I went in for an infusion of Avastin today and started another week of Xeloda. There's a chance that this is my last dose of chemotherapy and I can go treatment-free for months or years. A welcome and long prayed for life change.

Or the blips in my CEA could be regrowing cancer and the scans could show that the questionable spots in my liver from last time are in fact new tumors. That would probably mean that my current treatment has stopped working and it's time to consider something else. A darker change that could make the past year of chemo seem pleasant.

My career is also on a cusp. I am now unemployed again since the grant that paid for my part-time work ran out. My boss is seeking funds for another year, but that depends on budget decisions which are out of our control. I expect a decision any day and it could mean returning to work in my research field, especially if I get off chemo and have a return to normalcy. Or it could be time to seek fresh work.

I'd like to stay in science since it's something that I enjoy, am good at, and am highly trained for. But it's been discouraging to make so little progress while I've been ill, during the very postdoctoral years when a young scientist should be rapidly growing and flourishing. I see other researchers accomplishing work on the ideas I had three years ago but haven't had the time and health to do myself. Maybe science just isn't compatible with unstable health and I should move to a field where results come quicker and without such deep investment.

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.