Soayacs: Stories of a Young Adult Cancer Survivor

175,000 calories

2010-08-30T11:03:00.001-04:00

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

2010-06-02T21:10:00.001-04:00

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

2010-04-26T15:04:00.001-04:00

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

2010-04-10T03:49:00.004-04:00

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.

Ostomy care for sensitive skin

2010-01-19T18:21:00.001-05:00

My skin is sensitive to many adhesives, solvents, and fragrances. So it's been a challenge to keep my skin happy now that I have an ostomy again. I had lots of problems with itchy rashes and irritation with my previous ostomies and during the first couple months with this one, but now I've come up with a routine that keeps my skin happy.

I change my wafer every 6 to 8 days. It hurts to pull it off, so I soften the adhesive my smearing petroleum jelly on the fabric mesh area an hour before I shower. I let it soften up more with warm water while I do my usual showering. Then I slowly peel it from the edges and help it separate from my skin and body hairs by wiping the interface with a soft facial towelette. I typically use sensitive-skin Dove or Oil of Olay towelettes, the kind that are packaged dry and get sudsy with water.

After the wafer is off I let any residues soften up with a couple minutes of warm water over the area. I don't let the water get too hot, though, because I figure that the exposed colon is more delicate than skin. So I try to stay close to body temperature. After the previously covered area has had a good rinse, I get a fresh washcloth soapy with unscented Dove and gently rub the skin to get off all the adhesive and petroleum jelly. I also run the edge of the washcloth along the base of the stoma to remove any residue that built up there.

After a couple of good washes and rinses, I stay in the shower a few minutes longer to let the skin relax and breathe. Then I dry off and dab the skin in the area with another clean, dry washcloth. My new stoma is a couple inches long and hangs down when I'm standing, so I move to my bed where it's in a better position to apply the new wafer.

I like to let the skin air dry for at least fifteen minutes so it's not too pink and raw when I put on the new wafer. I have the wafer opening already cut and then I apply the Adapt paste around the inner edge while I wait. I apply enough paste to cover the few millimeters of exposed skin between the stoma and the semi-rigid wafer. The paste protects the skin from the colostomy output, but the solvents in the paste can also irritate my skin. So I let the paste air out for ten minutes before putting the wafer on.

When the skin is dry and the wafer is ready, I carefully position it to center the stoma in the opening. If the stoma hits against the edges then it'll be uncomfortable as it changes size when stool moves through. And if the gap is too big then skin will be left exposed. I try to keep my belly at a natural position as I stick on the fabric part of the wafer. If I suck in my gut too much then it'll pull when my belly gets full. And if I stick it out too far then the fabric will wrinkle and come loose when the skin contracts.

This routine has been keeping my skin happy and the wafer secure for at least a week at a time. I can usually feel the edges of the fabric and the inner semi-rigid parts loosen up when it gets close to the next changing time. It would probably stay on for longer, but I don't think it's a good idea to leave the area covered and uninspected for much more than a week.

There are various protective skin gels and powders that the ostomy suppliers sell, but every one I've tried has given me a bad and worsening rash. So I find that the best method is to be slow, gentle, and clean. The one exception is when I have a surgical wound or ulcer under the wafer. Then I cover it with Aquacel Ag, a soft fabric that acts like an artificial scab and lets the skin heal without getting further damaged by the wafer. At those times I changed the wafer more often, every 4 to 5 days, to prevent the Aquacel from stewing too long and to check on the healing.

Uncertain health

2010-01-15T15:09:00.004-05:00

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

2009-12-10T09:33:00.006-05:00

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

2009-11-04T20:44:00.005-05:00

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

2009-09-14T17:23:00.004-04:00

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

2009-08-12T13:29:00.003-04:00

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.

Ow, %&#@!

2009-07-12T11:55:00.002-04:00

Scientific American reports that swearing provides pain relief. Now I don't feel so wimpy for moaning and cursing when I've had bad pain. Researchers theorize that swearing taps into ancient parts of the brain that respond to danger with angry vocalizations to intimidate attackers.

I have also found that singing can help with pain endurance too. During my sessions of CyberKnife radiation, my muscles and bones hurt more and more during the hour kept still on the hard table. On the third session, I tried humming along to my iPod and got through the last thirty minutes much easier than with the other sessions.

Oxycodone and OxyContin

2009-06-28T12:38:00.002-04:00

My first experience with medication for cancer pain was around January 2007. A tumor in my pelvic bone made it very painful to walk or lay flat. Then when I went through radiation therapy I got radiation proctitis – burns to my rectum and anus that made bowel movements extremely painful.

We treated those bouts of pain with oxycodone. A typical dose for me was one 5 mg tablet when the pain acted up, repeated every four to six hours if needed. More intense pain from the proctitis needed 10 mg at a time, but that tended to quiet down until the next bowel movement so it was not repeated as frequently. A really bad day might mean a total dosage of 30 mg of oxycodone. A moderate day would mean 5 to 10 mg, and good days none at all.

Then last month we found a tumor growing into my tailbone. So I started back to taking 5 to 10 mg of oxycodone a day. A week later I was taking 20 mg a day and not getting relief. So my radiation oncologist started me on OxyContin, the controlled release formulation of oxycodone. He explained that keeping a constant concentration of oxycodone in my system would prevent the pain from breaking through, and an ounce of prevention is worth a pound of cure.

I started on 10 mg OxyContin twice a day but found that I still needed the oxycodone to knock the pain down. Then we went to 20 mg OxyContin twice a day – still not enough. I tried taking it more often, three or four times a day plus oxycodone as needed, but I was still having debilitating pain. I started keeping notecards of my pill consumption and found I was getting around 120 mg a day of oxycodone in my system. A few hours a day a would feel okay, but at other times I would be moaning or pacing in pain.

I decided I needed to get a handle on how much oxycodone I was getting between the controlled release and immediate release forms. So I started by finding the pharmacokinetic data on oxycodone and OxyContin:

Oxycodone gets into the bloodstream quickly – about one hour to reach peak concentration – and then decays away exponentially. OxyContin takes a couple hours to provide its maximum concentration of oxycodone and that level stays elevated longer as the pill keeps delivering medication while it travels through the intestines.

It happens that 10 mg OxyContin gives about the same peak level as 5 mg oxycodone. Half of that peak is maintained up to six hours with oxycodone or twelve hours with OxyContin. Depending on what concentration your body needs to control the pain, that gives and idea of how long one dose will be effective.

You'll notice that for neither formulation is the concentration stable for any period of time. This was a little surprising to me after reading how OxyContin is supposed to provide twelve hours of continuous relief. That's only true if the concentration out at twelve hours is enough to control your pain, and that means that for most of those hours the oxycodone concentration will be higher than you need. Just how drastically the concentration varies is somewhat masked by the use of a logarithmic scale in the drug literature rather than the linear scale in this reproduction.

I wrote a computer program so that I could combine the effect from multiple doses of oxycodone and OxyContin, either on a regular daily cycle or from my own irregular dosage records. Comparing 5 mg oxycodone taken every six hours to 10 mg OxyContin taken every twelve hours illustrates the theory behind its standard dosage schedule.

As with single doses, the two formulations reach the same peak concentration. With oxycodone it falls off quickly and a second dose is needed to get it back up. By coincidence or skillful formulation, the concentration from either dosage (5 mg oxycodone every six hours or 10 mg OxyContin every twelve hours) is nearly identical at the twelfth hour. Thus OxyContin provides the same peak, minimum, and duration as the equivalent dosage of oxycodone.

When I tried taking OxyContin alone I noticed that, after waiting a couple hours for it to kick in, I would get about six hours of relief. But I was certainly not getting a full twelve hours. Since I had multiple prescription strengths on hand, I decided to compare taking a lower dose more frequently to a higher dose less often.

I felt better with the high frequency dosing because it kept tighter control on the oxycodone concentration. If my threshold for pain were 30 ng/mL, then twelve-hour dosing would leave me below that level for a few hours each cycle whereas six-hour dosing kept me always above. Furthermore, the twelve-hour dosing would also make me higher than necessary for a few hours each dose. For any strength of OxyContin, twelve-hour dosing produces a variation in oxycodone concentration by about a factor of two.

In retrospect it's not too surprising that I don't get get twelve hours of relief from a single dose of OxyContin. I don't get six hours of relief from oxycodone either; usually I feel it fading after four. So any formulation equivalent to six-hour dosing of oxycodone won't cut it. I could use a higher dose to keep the late hours covered, but I seem to be sensitive to the consequent overdose in the early hours.

Finally, I compared my actual dosage records to the baseline OxyContin dosage I was using for a period of four days. I had recently increased to 20 mg OxyContin every six hours and took extra 10 mg OxyContins and 5 mg oxycodones as needed for pain.

Sometimes during this period I felt okay but many times I was in moderate to severe pain. The erratic oxycodone concentration gives a clue why that was. My baseline dosage was not nearly high enough to control my pain. Relying on a lot of immediate release oxycodone produced big spikes and dips in the concentration. And adding irregular 10 mg OxyContin boosters generated delayed responses and lingering effects that were hard to track without a computer.

After seeing this analysis I asked my radiation oncologist for 40 mg OxyContin every six hours. That seemed to be a good baseline that to keep me near the level of pain control and allow for smaller, more predictable doses to manage breakthrough pain.

My pain management since that dosage adjustment has in fact been much better. Some of that relief may be from the radiation doing its job on the cancer, though it's still early in the therapy to expect that. In any case I think that analyzing my pain medication in this way helped to get it under control.

For any computer nerds reading this, the program I wrote is in Python and appears below in microprint. You can copy it to a text editor to read, save, and run. There are two versions. One takes periodic doses on the command line to output twenty-four hours of concentration versus time. The other takes a file with space-delimited time-dose pairs listed one per line. It outputs the concentration from the time of the earliest dose until the last effects of the latest dose.

Oxycontin.py:

#!/usr/bin/env python

# Oxycontin.py  21 June 2009
#
# Python program to simulate plasma concentration of oxycodone from periodic
# doses of OxyContin and oxycodone
#
# Usage:
#   chmod +x Oxycontin.py  [run once to make file executable]
#   ./Oxycontin.py time1 dose1 [time2 dose2] [...]
#   time measured in hr
#   dose measured in mg (5 for oxycodone, any other for OxyContin)
#   outputs concentration (ng/mL) versus time
#
# Examples:
#   ./Oxycontin.py 0 10 12 10           [10 mg of OxyContin every 12 hours]
#   ./Oxycontin.py 0 5 6 5 12 5 18 5    [5 mg of oxycodone every 6 hours]
#   ./Oxycontin.py 0 20 0 5 12 20 12 5  [20 mg OxyContins with 5 mg oxycodones]
#
# Richard J. Wagner, Ph.D.  wagnerr@umich.edu  http://soayacs.blogspot.com/

# ---------------------------------------------------------------------------- #

import sys

# ---------------------------------------------------------------------------- #

# Concentration profile for 20 mg of OxyContin at 30-minute intervals
# Source: Purdue Pharma L.P., Stamford CT (2007) with linear interpolation and
# exponential extrapolation (12.7 hr half-life during 36-hour transit and 3.7 hr
# half-life after excretion)
oxycontin = [ 0.00, 3.80, 12.00, 14.30, 15.00, 15.90, 15.90, 15.40, 14.80,
14.48,14.15, 13.83, 13.50, 12.80, 12.10, 11.40, 10.70, 10.33, 9.95, 9.58, 9.20,
8.85, 8.50, 8.15, 7.80, 7.51, 7.22, 6.94, 6.67, 6.42, 6.17, 5.93, 5.70, 5.48,
5.27, 5.06, 4.87, 4.68, 4.50, 4.32, 4.15, 3.99, 3.84, 3.69, 3.55, 3.41, 3.28,
3.15, 3.03, 2.91, 2.80, 2.69, 2.59, 2.49, 2.39, 2.30, 2.21, 2.12, 2.04, 1.96,
1.89, 1.81, 1.74, 1.68, 1.61, 1.55, 1.49, 1.43, 1.37, 1.32, 1.27, 1.22, 1.17,
0.99, 0.86, 0.75, 0.66, 0.57, 0.50, 0.44, 0.38, 0.33, 0.29, 0.26, 0.22, 0.20,
0.17, 0.15, 0.13, 0.11, 0.10, 0.09, 0.08, 0.07, 0.06, 0.05, 0.04 ]

# Concentration profile for 5 mg of oxycodone at 30-minute intervals
# Source: Roxicodone (oxycodone hydrochloride), Xanodyne Pharmaceuticals, Inc.,
# Newport KY (2009) with linear interpolation
oxycodone = [ 0.00, 4.22, 7.73, 7.30, 6.43, 5.92, 5.40, 5.00, 4.60, 4.43, 4.27,
4.10, 3.93, 3.69, 3.45, 3.21, 2.97, 2.78, 2.59, 2.39, 2.20, 1.96, 1.72, 1.47,
1.23, 1.16, 1.10, 1.03, 0.97, 0.90, 0.83, 0.77, 0.70, 0.64, 0.58, 0.52, 0.47,
0.41, 0.35, 0.29, 0.23, 0.21, 0.18, 0.16, 0.13, 0.11, 0.08, 0.06, 0.03 ]

# ---------------------------------------------------------------------------- #

profile = [ 0.0 ] * 48  # a day of 30-minute intervals

doses = sys.argv[1:]
doses.reverse()
while doses:
 time = int( 2.0 * float(doses.pop()) )
 dose = int(doses.pop())
 if dose == 5:
  for t in range( len(oxycodone) ):
   profile[ (time+t) % 48 ] += oxycodone[t]
 else:
  for t in range( len(oxycontin) ):
   profile[ (time+t) % 48 ] += ( dose / 20.0 ) * oxycontin[t]

for t in range( len(profile) ):
 print t * 0.5, profile[t]
print len(profile) * 0.5, profile[0]

sys.exit()

# ---------------------------------------------------------------------------- #

OxycontinHistory.py:

#!/usr/bin/env python

# OxycontinHistory.py  21 June 2009
#
# Python program to simulate plasma concentration of oxycodone from nonperiodic
# doses of OxyContin and oxycodone
#
# Usage:
#   chmod +x OxycontinHistory.py  [run once to make file executable]
#   ./Oxycontin.py OxyDoses.inp
#   takes input file of dose (mg) vs time (hr)
#   outputs concentration (ng/mL) versus time
#
# Richard J. Wagner, Ph.D.  wagnerr@umich.edu  http://soayacs.blogspot.com/

# ---------------------------------------------------------------------------- #

import string
import sys

# ---------------------------------------------------------------------------- #

# Concentration profile for 20 mg of OxyContin at 30-minute intervals
# Source: Purdue Pharma L.P., Stamford CT (2007) with linear interpolation and
# exponential extrapolation (12.7 hr half-life during 36-hour transit and 3.7 hr
# half-life after excretion)
oxycontin = [ 0.00, 3.80, 12.00, 14.30, 15.00, 15.90, 15.90, 15.40, 14.80,
14.48,14.15, 13.83, 13.50, 12.80, 12.10, 11.40, 10.70, 10.33, 9.95, 9.58, 9.20,
8.85, 8.50, 8.15, 7.80, 7.51, 7.22, 6.94, 6.67, 6.42, 6.17, 5.93, 5.70, 5.48,
5.27, 5.06, 4.87, 4.68, 4.50, 4.32, 4.15, 3.99, 3.84, 3.69, 3.55, 3.41, 3.28,
3.15, 3.03, 2.91, 2.80, 2.69, 2.59, 2.49, 2.39, 2.30, 2.21, 2.12, 2.04, 1.96,
1.89, 1.81, 1.74, 1.68, 1.61, 1.55, 1.49, 1.43, 1.37, 1.32, 1.27, 1.22, 1.17,
0.99, 0.86, 0.75, 0.66, 0.57, 0.50, 0.44, 0.38, 0.33, 0.29, 0.26, 0.22, 0.20,
0.17, 0.15, 0.13, 0.11, 0.10, 0.09, 0.08, 0.07, 0.06, 0.05, 0.04 ]

# Concentration profile for 5 mg of oxycodone at 30-minute intervals
# Source: Roxicodone (oxycodone hydrochloride), Xanodyne Pharmaceuticals, Inc.,
# Newport KY (2009) with linear interpolation
oxycodone = [ 0.00, 4.22, 7.73, 7.30, 6.43, 5.92, 5.40, 5.00, 4.60, 4.43, 4.27,
4.10, 3.93, 3.69, 3.45, 3.21, 2.97, 2.78, 2.59, 2.39, 2.20, 1.96, 1.72, 1.47,
1.23, 1.16, 1.10, 1.03, 0.97, 0.90, 0.83, 0.77, 0.70, 0.64, 0.58, 0.52, 0.47,
0.41, 0.35, 0.29, 0.23, 0.21, 0.18, 0.16, 0.13, 0.11, 0.08, 0.06, 0.03 ]

# ---------------------------------------------------------------------------- #

# Read tab-delimited time(hr)-dose(mg) pairs from the given data file name
doses = []
for line in open(sys.argv[1]).readlines():
 terms = string.split(line)
 doses.append( ( int( 2.0 * float(terms[0]) ), int(terms[1]) ) )
start = doses[0][0]
stop = doses[-1][0]
slack = max( len(oxycontin), len(oxycodone) )
duration = stop - start + slack

profile = [ 0.0 ] * duration

for dose in doses:
 if dose[1] == 5:
  for t in range( len(oxycodone) ):
   profile[ dose[0] - start + t ] += oxycodone[t]
 else:
  for t in range( len(oxycontin) ):
   profile[ dose[0] - start + t ] += ( dose[1] / 20.0 ) * oxycontin[t]

for t in range( len(profile) ):
 print 0.5 * ( start + t ), profile[t]

sys.exit()

# ---------------------------------------------------------------------------- #

Those fiendish cells

2009-06-10T17:24:00.004-04:00

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.

Threads of reincarnation

2009-05-07T08:51:00.003-04:00

I don't believe in an afterlife, but I'm not 100% sure that one does not exist. So sometimes I ponder how it might work. How is the soul tied to the body, and where does the soul go when the body can no longer carry it?

One idea is that there is a whole other realm where souls go after leaving this world – heaven, hell, etc. But a simpler idea is that the souls return to our own world to continue their existence. They are reincarnated with a different body and maybe with different circumstances based upon what the soul did in previous incarnations.

One argument against reincarnation is that there are not enough souls to go around. The population of the world is growing (generally exponentially), so there are many more bodies now than there were a thousand years ago. Where did we get all the souls to inhabit these bodies? Or what were today's billions of souls doing when there were not enough bodies for them to inhabit?

I believe that time is an illusion, so I have an explanation based on the plasticity of time. Think of our world as a sheet of canvas and think of our souls as long threads. With time running from left to right across the front of the canvas, a soul comes into life by piercing the canvas from behind. It lives its life along the front of the canvas and leaves our world by piercing back behind at some point to the right.

If time were immutable then any reincarnation must occur with a return to the front of the canvas somewhere still farther to the right. But if the netherworld is free from our constraints of time, then the thread could run in any direction behind the canvas. It might return to the left, and come back to the front at any point, even one corresponding to a time before its prior life.

If the soul has little or no memory of its previous lives, then it could even make parallel runs across the front of the canvas without any paradoxes of coexistence. This flexibility means that all the living people you see today could be inhabited by any number of souls (up to as many as there are people today). And there could be any number of souls, weaving back and forth through time to inhabit all the bodies that ever have been or ever will be.

So be nice to your neighbors. They might be the other lives woven from the same thread as you.

Wii Fit

2009-04-07T21:19:00.002-04:00

Having been through major surgery before, I knew how hard recovery would be after my big abdominal procedure in December. It's amazing how quickly the muscles atrophy during a week or two in a hospital bed. And the body turns to burning muscle when your digestive system is out of commission for a while.

So I prepared this time by getting Wii Fit. It's a step board with sensors and a game disc that leads you on a variety of exercises. There's yoga, strength training, aerobics, and balance games. My favorites have been hula hoop, step dance aerobics, and ski slalom.

I've never been a regular exerciser, partly because I get bored with the purposeless repetition. Wii Fit helped motivate me by teaching me new exercises, rewarding me with unlocked features, and letting me track my weight and fitness over time.

There's also a social aspect. Before my surgery I tried out the games with my family. We each made our own avatar and competed at the games, setting records for time and quality. Then after surgery when I exercised alone the game put my family and friends in the scene to help motivate me. (That's a few of them with me in the picture above.)

I do think the game helped me recover faster, especially since it was the middle of winter and hard to get outside for long walks. The exercise was plenty to raise my heart rate and strain my muscles. It might also be effective for weight loss, though that was the opposite of my goal post-surgery.

Unfortunately I haven't stuck with Wii Fit like I probably should. Once I was well enough to get out of the house I preferred to go to work or do household chores rather than spend my limited energy on exercise. But now my energy has improved so that I'm trying to keep up with both regular activities and exercise.

My ostomy

2009-03-18T17:12:00.003-04:00

My big surgery in December was prompted by a tumor growing in my rectum and threatening to block the passage of stool. When the doctor removed the tumor he had to remove the rest of my rectum too. The rectum normally sits between the end of the colon and the anus, acting as a warehouse for poop.

With the rectum removed I was left with a short anal stump and the loose end of the colon was redirected to a hole in my abdominal wall (called a stoma). There the stool exits and is collected in a plastic bag taped to my belly. Without a rectum or anus to limit movement through the stoma, gas and stool exit whenever the colon becomes active. That can happen at any time of day or night but is most likely after starting to eat.

My ostomy bag is a two-piece Hollister New Image system. It has an adhesive flange which I tape to my belly and a hole in the center for the stoma to protrude through. On top of that flange I place a special opaque plastic bag to collect stool. It has a charcoal filter to let gasses vent without odor and a clipped opening to allow collected stool to be emptied into a toilet. I replace the bag every two days for freshness and change the flange about once a week to clean the skin underneath and restore adhesion.

My stoma is up to two inches long, depending on whether my colon is in a relaxed or contracted state. It sits upon a crowned region of my belly due to the rearrangement of intestines beneath. So the whole appliance, with the crown, stoma, bag, and contents included protrudes two or three inches compared to the other side of my belly.

I check on the bare stoma when I change a bag or remove the flange and clean the whole area. It's a soft, pink tube that weeps moisture and bleeds easily if touched. It does not have nerves to feel touch but does give a sensation of pressure as stool passes.

It's hard for me to accept having this new body part and associated medical appliance constantly on my body. I'm not eager to go shirtless in front of anybody – no more beaches, pools, or bare backed work in the sun. The lack of control, feeling, and muffling means that I can let out a big fart sound at any time without warning – quiet meeting rooms make me anxious. The appliance takes more time to dry or change after a shower, so it's impossible to jump in for a quick shower.

The protrusion of the stoma makes me uncomfortable trying to lay on my belly in bed. It's not that the stoma hurts from the weight, but I worry that it will be harmed or get stuck trying to pass something out. Likewise, sexual relations are more inhibited. First, I don't feel very sexy with this big bandage-looking thing on my belly. Second, the flap of the bag hangs down right into the area where business gets done. I haven't found a comfortable way to fasten it out of the way. And third, the stoma and any contents of the bag make it uncomfortable to lie belly to belly with another person.

The biggest discouragement to me now is that: the ostomy interferes with intimacy and affection. The second biggest annoyance is with clothing. Now, in the winter, I can cover up the appearance of the appliance with layers of heavy clothes. But still it sometimes looks like I have something hidden under my shirt or that I have a strikingly large beer belly in comparison to my otherwise thin frame. This problem is likely to get worse as the weather warms.

My strategy for now is to get more comfortable with my own body and worry less about how it appears. But I am a person who likes to dress sharp in public, so having half my wardrobe not function and appearing less fit than I am is embarrassing.

I don't want to complain too much. Having the ostomy saves me from the poor function I had before the surgery: unpredictable bowel movements up to twenty times a day, pain, and an impending blockage. I feel lucky that I haven't had to endure worse medical augmentation. And I look forward to taking advantage of the greater freedom for travel and activities.

Pain scale

2009-02-27T21:44:00.003-05:00

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.

Sense of touch

2009-02-06T14:28:00.002-05:00

I lost some feeling in my hands and feet due to the various chemotherapy drugs I've taken over the past five years. I also lost my fingerprints thanks to Xeloda, which irritates the palms and soles in a reaction called hand-foot syndrome.

When I went to Disney World in 2007 I found that the entry gates use fingerprint scanners to ensure that the person using an electronic ticket is the same one who registered it. The scanner choked when I tried to register and an attendant had to override it. I bet that enough of the population has similar issues that it's in their training manual. I suppose it also means that people like me are a headache for anyone else trying to use fingerprints for identification.

Some of the numbness is nerve damage, particularly from the platinum-based drugs. The nerves do slowly heal, so I am getting some feeling back. In fact, now that I've been off of systemic chemo for four months I have enough feeling to realize that I lost more than I appreciated. Except for a period after a massive dose in 2005, the numbness hasn't been enough to interfere with tasks like holding a pen or buttoning a shirt. It's just been a dullness of sensation.

Today I learned that there's another explanation. According to research published in Science, fingerprints enhance the sense of touch. The ridges vibrate as they encounter bumps on a surface and transmit stronger signals to the nerve endings. So part of my numbness to texture is not just the nerve damage but the lack of fingerprints. I wonder if they, too, will regrow over time.

Holiday missed

2009-01-05T11:21:00.003-05:00

One of the downsides of my big surgery is that it had to be done in December. I delayed it a week or two so that I could enjoy Thanksgiving with my family and some early Christmas activities. For the past few years of cancer treatment I have tried to schedule a break for Christmas so that I could enjoy the festivities and time with family.

But I didn't think it would be wise to delay this surgery any longer. And from my surgeon's description the tumor in my rectum was on the verge of becoming life-threatening any day. So I sucked it up and focused on surviving the surgery, sacrificing what is regularly the happiest time of the year for family, friends, and me.

Now that my body is finding it's new normal, the holidays are over and the first full week of January marks a return to sober routines of work and non-festive cold weather. It's all a little more depressing without fresh memories of a fun Christmas break.

At least there is one more holiday to celebrate. Since I was little my family celebrated Epiphany, or Little Christmas, on January 6th with a nice meal and a small gift exchange. I will try to enjoy that again this year in the company of my girlfriend and companions.

Bearded man

2008-12-31T17:31:00.002-05:00

I'm out of the hospital after my big surgery. It went well – the surgeon found only the two known tumors to be removed. The one in my rectum had grown to the size of a lemon and was very near complete obstruction, so I'm lucky that I didn't need a half-assed emergency surgery in the weeks leading up to the one we planned.

The rest of my abdomen looked clean, so they took out the tumors, applied heated chemotherapy, and sewed me back together. My rectum was lost to the tumor, so now I have a permanent colostomy. The tumor was also attached to my bladder but fortunately the surgeon was able to separate them and save my urinary tract.

I've been back home for a week, enjoying the peace and privacy that lack during any hospitalization. I skipped shaving in protest, as an energy-saving measure, and out of curiosity for how I'd look with two weeks' growth. My energy and appetite are slowly improving; my brain is still a bowl of mush.

A big day

2008-12-04T17:34:00.007-05:00

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

2008-12-01T20:26:00.007-05:00

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.

Avastin hypertension

2008-10-23T10:40:00.003-04:00

I am now off of Avastin in preparation for surgery in December. Since Avastin prevents blood vessel growth, it needs to be removed so that the surgical wounds can heal properly.

Another side effect is hypertension. My blood pressure lately is around 155/90 and that's even with 10 mg per day of Norvasc. I haven't noticed any problems with the high blood pressure, but I know that long term it should be lower. I was curious how long it takes to return to normal after stopping Avastin, so I did a little Googling.

There's a good amount of information now about how to identify and manage Avastin-induced hypertension, but I haven't yet found any data about how patients respond after stopping it. Then it occurred to me – Avastin is usually given to patients with late stage cancer, so there's probably not much chance to track patients for years after stopping therapy.

It's just another little reminder that I'm sailing in uncharted waters and heading further from shore every year. Fortunately I deal well with uncertainty so it doesn't bother me emotionally, but as a scientist it's striking to me how difficult it is in medicine to get enough data to make informed decisions.

Resurgence

2008-09-29T13:50:00.005-04:00

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).

Died young

2008-09-25T10:42:00.004-04:00

In the past day I learned that two of my friends with cancer died this week. Both were a little younger than me and struck with the disease while still in school.

One of them I met while I was getting treatment for my first recurrence, two years after my own initial diagnosis. She had a very similar medical history and even shared the same surgeon and oncologist. I tried to offer some encouragement and advice as she began her own battle. Unfortunately she had more trouble with the treatment and her cancer was more aggressive.

The other I met earlier this year through a support group for young adults with cancer. He had a rough time with repeated and painful metastases, but kept fighting, organized the support group, and enrolled in graduate school.

They say that people with cancer are living longer and that cancer is becoming a manageable long-term disease like diabetes. But with the recent loss of these two friends and the high profile loss of Tony Snow and Randy Pausch, it's apparent that cancer is still efficient at dishing out tragedy.

Symptoms of rectal tumor

2008-09-17T20:54:00.004-04:00

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.

You won't give up

2008-08-04T15:22:00.003-04:00

A few days after my recurrence was diagnosed, I woke up one morning to a voice saying: "You won't give up. You've been through so much already."

My first impression was that it was my mom talking to me – nevermind that she was in Europe at the time and I hadn't yet told my family about the return of cancer. But it wasn't exactly her voice and I had a sense that it was someone else speaking, and not necessarily somebody that I knew very well.

Of course being the moment between sleep and wakefulness I can attribute the message to a dream. And I'm not very spiritual so it's hard for me to say that it could be supernatural. But it's also hard for me to believe that that particular message came from my own mind.

In particular, the message wasn't "Don't give up" or "You'll be fine". It was "You won't give up", which is something I wasn't very confident about. It's taken a tremendous amount of effort to get through four years of treatment, and I'm not as young, naive, and cheerful as I was at the beginning. I have been hopeful, but this recurrence and return to treatment has come sooner and harder than I was ready for.

So I'm not sure that everything is going to be fine. And I'm not confident that I have a plan ready to get through another round of chemotherapy and radiation. But it is somehow reassuring (as well as exhausting) to be told that I still have a fight left in me.

Second recurrence

2008-07-23T21:29:00.003-04:00

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.

Writing about cancer

2008-07-08T15:09:00.004-04:00

I haven't published anything here in a while. At first that was because I had just finished with Xeloda and wanted to focus on non-cancer things for a while.

Later I did write some partial posts but never finished them. I felt that they sounded too optimistic, too preachy, or too pathetic, so I wasn't comfortable sharing them.

Then in June I felt sick for a couple weeks and got busy with tests to figure out what's wrong. I have some news to share from those in a few days, after I know more about what's going to happen.

In the meantime, I was pointed to a blog called My Cancer. It's by Leroy Sievers, a journalist dealing with advanced colon cancer. It's frightening for me to read his recent posts as he's suffering from the effects of widespread metastases that are likely to be in my future.

But it's an interesting, voluminous, and insightful blog. He even has a post on this same topic called Put On a Happy Face?.

Professor of Colorectal Cancer

2008-05-28T22:42:00.004-04:00

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.

Passing

2008-04-21T06:52:00.004-04:00

Life doesn't stop for cancer. When you or a loved one is diagnosed it seems like your world and all your plans are upended. But the world doesn't stop.

Housework still needs doing. Bills still need paying. Icy weather still causes car accidents. Hurricanes strike. Votes are counted. Relationships grow, strain, and regenerate. Nephews are born. And loved ones die.

My cat Alexander passed away yesterday. He was mine since high school, eighteen years ago. His favorite job was playing guard, over the garden or outside the shower. He is missed already.

The continuation of life after diagnosis can feel good and bad. There's comfort in normalcy and moments of joy even in dark days. But time keeps marching and won't give you a break from changing, aging, yearning, growing, grieving.

Chemotion

2008-03-30T14:24:00.003-04:00

Last week I took a week off from chemotherapy to celebrate Easter and regain strength for the last few weeks of chemotherapy. I noticed that I've been feeling more emotional lately, about the experience of cancer, toward personal relationships, and even in response to television shows and news stories.

Other cancer survivors have warned me that the period after treatment can be harder emotionally than treatment itself. The common belief, I think, is that one has to act strong and determined to tolerate the stress of treatment. After treatment, patients let their guard down and all the repressed feelings resurface. My increased emotion could be anticipation of finishing treatment and greater openness from discussing the experiences in support groups.

But this week as another dose of chemo builds in my system I feel the emotional numbness and detachment returning. I think now that it may in fact be another aspect of chemobrain. Just as memory, concentration, and agility are gummed up by therapeutic poisons, maybe emotion is too.

I have been looking forward to regaining my full intellectual abilities after two long years of chemotherapy. It will be interesting to see how my emotional state could change with recovery too.

Clean

2008-03-14T06:17:00.005-04:00

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.

Hippo

2008-02-20T20:00:00.004-05:00

This is Hippo. He came into my life a year ago, a gift from my girlfriend, Kiki. When I don't feel up to writing about the weighty matters in this blog, I help chronicle his adventures and discoveries at a site we call Hippograms.

It feels silly to admit but Hippo has been a helpful little guy. When I'm home alone due to treatment and unemployment he's always there looking happy. He's never scared, except of things like pythons and crocodiles. He's been a good outlet for happy thoughts and youthful innocence.

He's also been helpful in my relationship with Kiki. He has become our travel companion and frequent excuse for photographs when neither of us humans wants to be photographed ourselves. He even wrote a book about all our adventures (with a little help from Kiki). He's been a catalyst for creative collaboration and a neutral arbitrator when his humans get a little frazzled.

Everybody should have a Hippo.

On the cusp

2008-02-20T14:02:00.003-05:00

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.

Friendships

2007-12-02T14:00:00.000-05:00

One of the depressing results of cancer is its impact on friendships. When I was first diagnosed I gave the news to some of my closer friends. Many responded supportively, and some who I knew only moderately well became closer and more supportive upon hearing the news.

But others who I thought I had been close with did not respond at all. For a while I thought that it was a case of finding out who your true friends are in a time of crisis. But then in a cancer support group I learned that there is another common explanation. Sometimes people don't know how to react to a person with cancer. They might think that you want to be left alone, or they're not comfortable dealing with illness or intimacy. Especially in a young group of peers many will not have experienced a friend fighting cancer before.

Cancer has also interfered with forming new friendships. After three years I realize that the vast majority of those close to me are people I met before diagnosis. There are many people who I knew casually before and have gotten to know better since, but there are very few who I have met and developed as friends entirely after diagnosis.

I think one reason is that I appear as a different person while I deal with the disease. Chemotherapy, surgery, radiation, and the cancer itself all detract from my well-being and the quality of my personality. There are good days and bad days, most days now I am less capable than most days before I got sick. I can't be as active as I want nor as strong, cheerful, talkative, adventurous, intelligent, or productive.

People who knew me before see me as temporarily handicapped and treat me with patience and compassion. Their impression of me was based on my former personality, and if they've known me long enough then three years of illness hasn't brought down my average too much.

But those who've met me recently see a person who is weaker, slower-witted, constrained by unpleasant bodily maladies like nausea, diarrhea, and fatigue. I'm not around as much for work or education. I don't go to scientific conferences or social gatherings as much as I'd like. I have fewer opportunities to meet new people and to get acquainted with those I do.

Actually I think I've done remarkably well during my illness and I'm grateful for feeling as good as I do. And in many ways what hasn't killed really has made me stronger, wiser, and more compassionate. Yet it's still regrettable to think of how much more I could be doing with good health.

How cancer starts

2007-11-08T13:14:00.000-05:00

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.

Genetic mutant

2007-10-31T17:39:00.000-04:00

I went to Baltimore today to get genetic test results from my doctors at Johns Hopkins. The results were somewhat inconclusive. It seems that my case is unusual even among unusual cases of cancer.

The first test was for microsatellite instability. They examined the DNA of my cancer cells to check for excessive repeats in the base sequences. Two of the five markers they examined were unstable, qualifying the specimen as having high microsatellite instability (MSI-H). That result is suggestive of a hereditary factor. It's also correlated with a better prognosis: "Colorectal carcinomas with no indication of microsatellite instability (MSS) have been associated with worse stage-specific survival after surgical and adjuvant therapies than those with MSI-H."

The second test looked at the expression of protein production in the cancer cells. With high microsatellite instability they expect certain proteins to be missing from those cells. However, my results showed that all of the proteins they checked were present. It's possible that the proteins were present but nonfunctional due to mutations or misfolding.

Since these first two tests suggest a hereditary cause but are inconclusive themselves, the next step is to examine certain genes from my normal tissue. There are four genes known to be involved in hereditary colorectal cancers and defects in two of those genes produce 90% of the cases. So they will start by checking those first two genes.

I'm not sure whether being diagnosed with hereditary colorectal cancer would be good news or bad. The average prognosis is better, but it also means a greater chance of recurrence and a greater risk for my relatives. The information is also interesting to the doctors at Johns Hopkins academically and might help direct treatment some day in the future.

Reevaluation

2007-10-24T14:52:00.001-04:00

After a year on Xeloda plus Avastin, my CEA has reached the normal range and stayed there for a month. I took a week off from chemotherapy to share a vacation with my family (mother, three sisters, two brothers-in-law, one niece, three nephews, and my girlfriend) in Florida.

By the end of the week I felt something surprising: normalcy. My energy level is good, my appetite is solid, my skin condition is closer to normal. My previously tumor-ravaged hip joint didn't give me any trouble in miles of walking per day. My mental capacities are slowly improving enough so that I started a fresh batch of computer simulations for work, something I haven't done since declaring my cancer returned in June 2006. I don't feel like I have cancer anymore.

We are continuing with chemotherapy and that alone will be enough to make me feel sick for the coming months. But we have quietly reached the milestone where it's worthwhile to reevaluate the state of my body and look for a basis of hope that good health can last beyond a few weeks or months.

There will be a flood of information coming and it will keep me busy running medical errands. I will receive genetic test results from Johns Hopkins University next week. The following day I will get a radioactive injection for a full body bone scan. I will return to the National Institutes of Health for CT and PET scans. And we'll continue to watch my CEA and see whether it rebounds or stays low.

I'm starting to think about what to do with myself if we declare my cancer in remission and stop treatment. The first time I reached remission we thought I might be cured and treated it as a cause for celebration. This time I'm reluctant to hope for being cured. But for all the unexpected tragedies in life, isn't it possible to sometimes find an unexpected miracle?

Cancer quantified

2007-10-01T16:37:00.000-04:00

Since starting treatment more than three years ago, our main measurement of its effectiveness has been the level of carcinoembryonic antigen (CEA) in my blood. CEA is a protein involved in cell adhesion that is normally present in a developing fetus but not in an adult. A plot of CEA versus time shows the history of my cancer's ebb and flow.

A normal CEA level is below 2.5 ng/mL. Higher levels can be produced by gastrointestinal cancers, and levels above 20 ng/mL are associated with metastatic tumors. Note that the vertical scale is logarithmic, not linear, so each major tick is ten times higher than the one below. My CEA was at 23 when diagnosed in August 2004.

Colectomy (removal of the lower colon) and FOLFOX chemotherapy reduced my CEA to normal. A laparoscopic examination showed that I still had many small tumors remaining, so in May 2005 surgeons removed my peritoneum (a membrane covering organs in the abdomen) and diseased parts of many other organs. Then they applied direct, heated chemotherapy to kill any remaining cancer cells.

The surgery seemed successful, but in early 2006 my CEA shot back up to worrying levels. CAT scans and PET scans confirmed that tumors were growing in several spots, particularly around the pelvis. We started chemotherapy with Erbitux and Camptosar, but the cancer kept growing.

In November 2006 we tried the oral chemotherapy Xeloda plus Avastin. The cancer responded well, and my CEA has dropped from a high of 160 ng/mL down to normal. We are continuing chemotherapy since a normal CEA does not necessarily mean that all the cancer is gone. I'll get scans again in a few weeks to see if those have cleared.

Interruptions

2007-09-16T09:34:00.000-04:00

A new school year is starting, and I happen to be in Michigan as September cools toward October. This is where I spent most of my first days of school, from kindergarten to college and graduate school.

I went to a college football game yesterday, the first one I've attended in person since finishing my last degree in 2003. Being back on campus made me think more intensely about the environment of school: the things I enjoyed, the things I miss, and the things I'm happy to be done with.

I became ill during my graduate schooling, and in retrospect my symptoms were probably caused by my cancer and went misdiagnosed for four years. The illness did slow me down sometimes and stunt my activities, but mostly I chalked it up to aging and a delicate constitution and continued about my business. The cancer was not diagnosed until the symptoms became more intense a few months after leaving school.

I wonder what I would have done if the diagnosis was made while I was still a student. Would I stay enrolled? Skip a semester? Leave entirely? I would probably have wanted to stay, but after experiencing surgery and chemotherapy I can't imagine that it would be possible to keep up while going through those.

And if I took a break when would I know to go back? In reality, doctors never say "Congratulations, we've removed the cancer and you're cured!". The results always feel very fragile — the drugs unpredictably knock the cancer down to immeasurable levels and you hope that it doesn't grow back, at least for a while. The chemotherapy may take months or years, and you have no idea how long a break will last when it comes.

Can you commit to years of schooling when you doubt that you can get through uninterrupted? What do you do if a final project is coming due and you start to feel something funny in your body? Do you push through and see the doctor later, or do you drop the schoolwork to go for consultations, lab tests, and scans? What happens to your social network, coursework, and housing if you get pulled away in the middle of a semester and can't return for a year? Does it even make sense to pursue education when you have a fatal disease?

I've met other young cancer survivors and I feel sad for those who were struck in college or graduate school and had to drop out. Myself, I answered many of those questions consciously before I knew what was making me sick and decided that finishing my doctorate was an invaluable goal. Particularly the final year of school I completed through stubborn determination and health be damned.

I'm realizing now that those issues don't stop with graduation. The intense, planned, compulsory institution of education is past (unless I go back as a teacher, which I'd like). But the freeform development of postgraduate adulthood is still enormously impacted by cancer.

Right now I am on a biweekly chemotherapy cycle. I get an infusion on the first day, take poisonous pills for seven days, and then recover for seven days. Out of that I usually feel pretty good for the last four days of recovery, bad for the last four days of poison, and so-so on the other six. My mental capacity fluctuates from good days to bad. I lose memory, quickness, creativity, and ambition on the low days. I imagine that if I were in school I would forget and disregard my classes on one week and realize how far behind I've fallen the next.

I'm trying to figure out how to plan and evaluate events with the knowledge of what's going on in my body. What in the past three years has been a true reflection of my character and what is a temporary handicap of my illness? It's hard to know in the midst of this great disruption.

The face of cancer - 9 months

2007-09-12T22:03:00.000-04:00

It has been three years since my diagnosis with Stage IV colon cancer. Three years since my first surgery and three years since my first chemotherapy. And it has been nine months since I began taking daily photographs to chronicle the changes in my appearance.

Three months ago I posted my first Face of Cancer video, and now I have an update. It is available in high resolution or as a low resolution stream from YouTube.

I am still in my third round of chemotherapy, nearing a year on that treatment. I'm feeling pretty well, walking normally, traveling more, and being productive. It's hard to believe that in January I was bald, had a broken pelvis, and was about to go through several months of pain and bleeding due to radiation treatment.

In my eyes the video shows me feeling better as the cancer and treatment effects subside. I hope to continue in that direction and have another, even healthier update at the one year mark.

Infertility

2007-08-11T16:21:00.000-04:00

Three years ago tomorrow I was diagnosed with colon cancer. Five days later I had surgery to remove the two-inch tumor that a colonoscopy had found just above my rectum. I was 31 years old, fresh out of graduate school, and dating but unattached.

On the day of the surgery I was still stunned from the diagnosis. I had high hopes that the cancer was localized and could be removed without permanent damage that would curtail a long and ordinary life. But as I woke from sedation after the surgery I learned that the news was much worse. The cancer had spread and was probably incurable. There were unremovable tumors throughout my pelvis and abdomen. To protect the remaining two-thirds of my colon, the surgeon diverted it to an opening in my abdominal wall rather than reattaching it to my rectum. My bowel movements would now exit through that hole into a plastic bag that I must wear, and without a sphincter I would be unable to control when gas and stool would make its exit.

Still, I didn't feel like I was dying. I hoped that chemotherapy or further surgery would yet buy me months and years of good health. I wanted to continue with my life on the path I had been taking before: work, education, recreation, and relationships. I was still young, ambitious, curious, and horny. As I learned about the changes in my body I wondered, "Can I still walk and work and travel like a normal person? Will anybody find me attractive again? And if they do, can I still function sexually?"

That's a big worry for a young man. It might be true that 20% of a man's waking hours are spent thinking about sex. Probably more if you count the time a man spends trying to make himself more attractive in the hopes of winning a mate (grooming, exercising, earning money, improving education, gaining power). It's far from the only important aspect of a relationship, but it would be a big blow to my identity if removed completely.

The worry was fueled by the fact that during my three days in the hospital I never had an erection. Any female reading this will probably laugh, but that's the longest that organ had gone quiet since age 12. A day or two after I got home from the hospital, while I was still in pain from surgery and in shock from everything, my curiosity drove me to test it manually. I was relieved to discover that I could still get an erection and achieve orgasm but, strangely, there was no ejaculate.

I thought it might be a temporary change. After all, my body was full of painkillers and that general area had received some startling rearrangement with a scalpel. Maybe it had reverted to how it worked when I was 12 and would regain full function after a few weeks' recovery.

I didn't ask my surgeon about this symptom. How could I? He was telling me how poor my prognosis was and that in the best case scenario I would need months of chemotherapy, a heroic surgery, and still be left with a brief and uncomfortable life. Should I say, "Yeah that's all fine, and I know that I'm unmarried, but what really worries me is that I can't ejaculate?"

Three years later the situation remains. I have a girlfriend now and appreciate that most things work. And it is convenient to have less mess and no need for extra birth control. But it does make orgasms less intense, and as a man it makes me feel less potent and powerful. And it means I won't ever by having kids, at least not without major medical intervention.

I'm not sure I wanted kids anyway. And I don't think it's responsible for me to try when it still appears unlikely that I would live long enough to raise them. I see my peers becoming parents and it looks like an enormous burden. I know that it's rewarding, but maybe I'm better suited to be a teacher and an uncle than to be a father myself.

Scrambled brain

2007-07-25T12:11:00.000-04:00

Chemotherapy continues to wreak havoc with my memory. But the scientist in me has been interested to discover some clues about how memory works.

I've known since my first round of chemotherapy in 2004 that the drugs interfere with my mental function just as much as they produce the usual bodily problems like nausea and diarrhea. On bad days especially I have trouble forming new memories, which is a merciful form of amnesia. But on those days I also have trouble recalling events from good days in the past. That's rather inconvenient since I'm currently on chemo two weeks per month and it's hard to get any work done or keep up with everyday tasks while I have Swiss cheese in my head.

Some of the memories return when I go off of chemo, but many seemed to be lost permanently. However, I have discovered that associated senses can bring back past events. A familiar smell or returning to a particular place can release a flood of related memories. So it's not always a loss of the memory from my brain but a disruption in my ability to access that information at will. I recently learned more about this phenomenon due to the assortment of medications that I take along with cancer treatment.

My Xeloda chemotherapy gives me mild to moderate nausea and I haven't found a good medication to alleviate it. I have medications that work great for severe nausea, but they have side effects like drowsiness, constipation, or unpleasant taste, so I try to avoid them when my nausea is milder. One medication that I sometimes use is Marinol which is synthetic THC, the active chemical in marijuana. It sometimes helps suppress the nausea and give me the munchies so that I can enjoy a good meal. But for me it takes a couple hours to kick in, it doesn't always work, and when it does work it can make me feel a little goofy. Since my main goal is to be able to perform and enjoy my usual activities, most of which are cerebral, I avoid Marinol except on the worst days when I would be debilitated by nausea otherwise.

I thought that maybe the reason I wasn't getting consistent relief from Marinol was that I was taking too low of a dose. The pills are 5 mg and the directions are to take one every 2 to 4 hours for up to 30 mg per day. I had only ever taken a single pill in a day. So on a bad day last week when the first pill didn't have a noticeable effect after two hours I went ahead and took a second one.

Finally my appetite improved and I made myself a nice dinner. But two hours later, when I thought that the first pill should be wearing off, something strange happened. I was playing a video game online and I started having trouble remembering what I was doing. I accidently made a move against my teammate because I forgot he wasn't my opponent.

Then over the next half hour the confusion increased. I kept realizing that I was playing a game as if it were something that I didn't previously know: "Oh yeah, I'm playing Starcraft. I guess I better make a move. Oh yeah, I'm playing Starcraft. I guess I better make a move. Oh yeah, I'm playing Starcraft...."

I had just enough presence of mind to realize that I should probably get off the computer and go lie down on the couch. I think that I won the game, but I can't remember exactly how. For the next few hours I watched movies on TV that I've seen a thousand times before: Saving Private Ryan, Star Wars, etc. But I kept noticing scenes as if I had never seen them. My appetite was better, but I was afraid to eat since I couldn't remember whether I had already eaten and didn't want to get over full.

I started to recall very old memories from my childhood and high school days. I experienced a strange sensation of time — I kept thinking that my present state of watching movies on the couch was also a memory. I couldn't distinguish which memories were closer to the present; they all seemed equally real and relevant to me. It was only intellectually that I could reason that it must be whichever memories in which I was oldest that belonged to the present.

I managed to keep myself planted on the couch for several hours and then go to bed. At least I think I did. My main thoughts at the time were: "If this is how it feels to smoke marijuana then I don't see the attraction" and "Taking two Marinols is something to avoid in the future."

I felt very confused the next day. The newly refreshed memories of my childhood were in my head and I still didn't have an innate sense of what was past and what was present. Ironically, even though I'm going through treatment for cancer, this is actually one of the happier eras in my life. It's disconcerting to feel that I might still be going through the hell of high school and the turbulence of early adulthood.

A week later I am getting a little more convinced that July 2007 is the present. With a few days break from chemo I managed to get my brain back in gear and get some work done. I have also realized that the episode reveals that many memories that I thought were lost due to time and chemotherapy are still stored in there somewhere and await rediscovery.

Kanreki (Second birth)

2007-07-24T14:26:00.000-04:00

In May 2005, as I prepared for a major operation to remove the rest of my multitudinous tumors, my girlfriend gave me a birthday card with a clipping of my horoscope from Free Will Astrology:

TAURUS (April 20 - May 20)
On a family member's 60th birthday, the Japanese celebrate a holiday known as kanreki. It's a time of rebirth, when the celebrant ritually becomes a baby again and enters a second childhood. Among the many gifts given on the occasion is a red kimono, which signifies that in a sense the person is now freed from the responsibilities of adulthood. I recommend that you treat yourself to a similar rite of passage, Taurus. Even though you may not be turning 60, you are at the beginning of an extraordinarily fresh new cycle. You deserve a red kimono and at least a temporary respite from adult burdens.

This seemed incredibly appropriate at this point in my fight with cancer. The diagnosis with a life-threatening disease had already put me through a mid-life crisis: What is important to me? Have I been leading my life as I should? What would I do differently if I had the chance to start over? I had decided that I needed to focus on my own goals in life and worry less about how quirky and eccentric I appeared to others. I needed to be more of an independent man, acting decisively and forcefully rather than deferring to the decisions of others.

Going into the hospital for weeks of treatment and months of recovery meant that I should forget about my other worries and focus on my treatment. I hoped that the surgery would mean rejuvenation for me — freedom from cancer and renewed vigor as I start life again but this time with greater wisdom and experience.

I didn't receive a kimono other than a small paper one on the card, but I was dressed in hospital gowns. I suppose that was my garb of kanreki.

After the surgery (which became a series of four, due to complications) I was nearly helpless. I was fed by a machine since I couldn't take food orally. Every day my mother or my girlfriend helped bathe me since I barely had the energy to stand or the muscles to reach my own head and feet. My brain was wiped clean by the chemotherapy drugs and kidney failure; I lost many memories of treatment and earlier times and my intelligence was reduced to that of a toddler. It really was like a second infancy.

As the surgical wounds healed, my body adapted to its new arrangement and my mental abilities gradually returned. Several months later I went back to work and resumed aspects of a normal life. I tried to conduct myself as I had decided I should, but it was hard not to revert to old habits. I still felt embarrassed and uncomfortable around most people and I felt guilty when I worked on my own creative projects rather than spending 9 to 5 at a regular job.

My second infancy was short-lived. Before I had fully recovered from surgeries there were signs that my cancer was returning. I was just making progress along the chosen path of my new life: producing exciting research, applying for a new job to move toward my goal of becoming a college professor, winning an award for my entry in a Science as Art exhibition. But then I had to stop all that to start another debilitating treatment.

I hope that I shall yet get rid of cancer and enjoy a long second (or third) life.

Employment

2007-06-26T14:50:00.000-04:00

My diagnosis with cancer has had a huge impact on my employment and the development of my career. Right from the beginning, the illness competed with work for my time and attention. I first noticed an increase in bleeding during bowel movements on Christmas Eve 2003. I was 31 years old and had just earned my PhD from the University of Michigan after five years of graduate school. I had moved my belongings to Washington, DC in November and was set to start a new job there in January. When the bleeding happened I knew that I would need to consult a doctor. But it would surely lead to weeks of testing, and I needed to be back in DC by January or else lose my job. So when the symptoms didn't immediately worsen I decided to wait until after the move.

Getting settled took time, and the bleeding was intermittent, so I didn't see a doctor until June. As expected, consultation led to testing and testing led to more testing. Eventually, all of the benign causes were ruled out and a colonoscopy in August 2004 revealed a cancerous tumor.

I needed to leave work for surgery, but as a new employee I had only a few days of sick leave accumulated. Fortunately, my employer offered a leave transfer program and my coworkers generously donated their own sick leave so that I would continue to be paid for the six weeks while I recovered.

After surgery I had to go through six months of chemotherapy. I started back at work full time during chemo minus a few hours per week for doctor's appointments. I did pretty well at putting in the hours, although I was less productive than usual since I felt sick half the time.

By May 2005 the chemo had shrunk the tumors and I returned to the hospital to have the remainder removed. That was a major, major surgery. A series of surgeries, in fact. I was hospitalized for weeks and unable to do significant work for months. Luckily my coworkers donated leave again so that I kept my position and pay while I recovered.

I returned to work full time in November of that year. My postdoc position was a two-year appointment and set to expire in January. Normally a postdoc like me would be busy publishing research papers and searching for a permanent job. But with all the medical treatment I hadn't made much progress. So I asked for and received a one-year extension of my appointment.

In early 2006 I was making rapid progress in my research and applying for permanent jobs. My goal was to be a college professor, possibly after a few years working in the pharmaceutical industry. But by June tests had shown that my cancer was regrowing and I started a second round of chemotherapy. It made me sick, my hair fell out, my energy level dropped, I had painful acne, yet the tumors continued to grow. I tried to continue working but really didn't get much done. More and more of my time was being consumed by doctor's appointments to manage the side effects and investigate other treatments.

I stopped my search for a permanent job since I was unfit to even travel for an interview. And what would I do if I found a new job? I couldn't be as productive as I needed to be and I could not imagine meeting the demands of a new college professor while going through chemotherapy.

In November of that year I flew to Michigan for Thanksgiving and to Boston for a scientific conference. During the travel I developed a pain in my leg that made it difficult to walk. I attended only a few hours of the conference to present my own research and had to skip the rest. When I returned to DC we found that tumors were destroying my pelvic bone and I would need radiation to alleviate the pain.

I quit my job in January 2007. The commencement of daily radiation treatments, on top of the pain and chemo side effects that I was already feeling, meant that I just couldn't be productive anymore. I applied for and received disability retirement and social security benefits. It's a relief to have a continuing source of income and health insurance, although it's half of what I earned while working and far less than I could make if I were healthy.

I'm feeling better these days. Radiation made me sicker for a few months but it did fix my leg. I'm walking normally now and feel well aside from the effects of chemo. I've returned to limited work on research with my former coworkers, only about ten hours per week. Things move slowly as a theoretical scientist; sometimes it's hard to maintain interest in research that will take years to have any practical impact.

Lately I've found it more rewarding to apply myself toward other kinds of creativity. This blog, for one, is something that I hope is significant and helpful to others. I am also spending a larger fraction of my time on hobbies of photography and game design. It's still frustrating and infuriating that so much of the past three years has been spent dealing with cancer while others my age are able to move ahead in their careers and focus on the normal concerns of life.

The face of cancer

2007-06-15T10:23:00.000-04:00

In November of 2006 I came across a fascinating video on YouTube called Everyday: Noah Kalina Takes a Photo of Himself Every Day for 6 Years. Since I was in the midst of chemotherapy, I became interested in seeing how my own face changed during my fight with cancer. I have compiled six months of my daily photos into Face of Cancer in high resolution or as a streaming movie from YouTube below.

The concept of daily self-portraits is not original to me nor to Noah. An article in the Boston Globe tells the story of a photographer who has been taking his own picture for twenty years. But I felt that the technique would be particularly well suited for chronicling how cancer affects a person's appearance.

Would I grow visibly sicker as chemotherapy took its toll or as the cancer progressed? Is appearance really a better indicator of health than blood tests and X-rays?

This movie begins with the start of my third round of chemotherapy. The second round had made my hair fall out and gave me terrible acne. I also had great pain with walking, which we would later learn was due to a tumor destroying my pelvic bone. The second and third months of this movie include a period of radiation treatment targeted at that tumor.

As an artist I regret not having photographs of earlier periods in my treatment such as hospitalization and recovery from surgery. But I had not yet conceived of addressing my cancer with art and daily photographs are not the sort of thing that family members usually think of when visiting a sick relative.

Washington, D.C.

2007-06-08T08:37:00.001-04:00

I moved to Washington DC seven months before my cancer was diagnosed. I live in Cleveland Park which is a nice residential neighborhood less than three miles from the White House. After the first surgery I was out of work for six weeks to recover. During that time I learned several advantages to being in a big city like Washington when you get sick:

My apartment is just blocks from a business district so I can easily walk down to restaurants, grocery stores, coffee houses, a movie theater, and a Metro subway station. That's been great for post-surgical weeks when I wasn't allowed to drive and had trouble walking. Going to the shops was good exercise for recuperating my strength and having some human contact in a bustling city, even if it's mostly nonverbal, is a big help for maintaining mental health during long periods of convalescence. I can't imagine living with cancer in some of the small towns and quiet suburbs where I have resided before. I would stay indoors for days on end and be left feeling like a helpless patient.

I have a small public park a block away and a real treasure, the National Zoo, three blocks away. Being part of the Smithsonian Instituion, it has free admission so I visit about once a month. It's therapeutic to get outdoors into lush foliage with nice trails and watch the animals play. The Zoo is also where I went with my girlfriend on our fourth date — the day that I told her about my disease and gave her the first chance to run away.

The other attractions around DC give me plenty of excuses for outings and help entertain friends and family who come to visit or caretake. The National Cathedral is nearby; I'm not religious but it is comforting to tour the grounds, relax in the gardens, attend an occasional concert, and bring my visiting relatives to pray in a place that should be close to God, whatever he is.

Another of my favorite places is the National Mall. The museums excite the scientist and artist in me. The memorials help me place my life in the context of history. And I enjoy watching the tourists who are coming to these sights for a once-in-a-lifetime pilgrimage. It makes me feel special to be living in a city that attracts visitors and workers from around the world and makes the national news and talk shows every night.

I'm also fortunate to have easy access to great research hospitals: the National Institutes of Health, Georgetown University, Johns Hopkins. When I've gone there for clinical trials and rare procedures I've seen that many of the other patients have to travel many hundreds of miles to get the same treatment. I'm still struggling with the idea of fate, but if I had to get sick then this was the best place to do it.

There is a dark side to Washington too. This is where the altruistic and ambitious come to serve their country. Unfortunately some are a bit more ambitious than altruistic and some become arrogant, greedy, and corrupt. You can sense the competitiveness and egomania that infects newcomers. Facing cancer seems to vaccinate one against fascination with the petty things. Although I am sometimes bitter about how cancer shoved me off of my intended path in life, I am glad that it has also pulled me out of the rat race.

Flashbacks

2007-05-15T22:12:00.000-04:00

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

2007-05-01T11:07:00.000-04:00

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

2007-05-01T08:05:00.000-04:00

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

2007-04-20T09:56:00.000-04:00

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

2007-04-13T16:04:00.000-04:00

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

2007-04-10T22:36:00.000-04:00

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

2007-04-09T15:47:00.000-04:00

One side effect of chemotherapy that I never knew existed until I experienced it myself is chemobrain. I noticed after receiving a few doses that along with feeling physically sick I also felt different mentally. My mind was functioning slower as if the gears in my head were getting gummed up with molasses. The effect would be worse for about a week after each infusion and then gradually improve.

I have experienced chemobrain to varying degrees from all three of the chemotherapy regimens that I've received and from a special chemotherapy dose given during my biggest surgery. The main symptoms are:

Impaired memory
Difficulty concentrating
Reduced intelligence
Diminished creativity
Lack of ambition

During my FOLFOX chemotherapy I felt crappy from infusion on Wednesdays until I started recovering on Sundays. Fridays and Saturdays were the worst -- I would mostly lie on the couch listening to the TV and eating very little. So when I felt a little better on Sunday I liked to get out of the house to see a movie with my girlfriend. But I discovered that I couldn't remember what I saw! I would see the same movies in the video store a few months later and not be sure whether I had seen them already. When my girlfriend reminded me that we had seen them together then I could recall the outing but still not remember much about the plot.

Failing memory is also a problem with relationships. Family and friends will call to check how I'm doing and I won't be able to remember what events we've already discussed or who has called recently. When presented with evidence I will vaguely recall the conversations but I often forget about events without reminders. I've probably done damage to my credit rating by forgetting that I had received bills in the mail and not getting around to paying them until I feel more clear-headed weeks later.

Beyond memory impairment I also suffer from other mental difficulties. My job is very mentally demanding (theoretical chemical engineering) and my personality is intellectual and introverted. But on days when chemobrain is bad I can barely manage to read and understand a newspaper. It's hard to concentrate on a subject or reason beyond a superficial extent. Television has become a good friend for giving me enough stimulation to keep me entertained without demanding much concentration or analysis.

I feel as though I lose twenty IQ points when I'm on a dose of chemotherapy. When I had a big surgery at the National Institutes of Health and was given a massive infusion of 5-fluorouracil I felt like I lost sixty IQ points. I could barely read and felt like an imbecile. Even many television shows were too challenging. The old game show The Price Is Right became the highlight of my days.

I don't know what the biological mechanism of chemobrain is. Maybe the chemotherapy drugs kill some brain cells along with the cancer, digestive, skin, and hair cells. Maybe it's not the drugs themselves but metabolic byproducts, the chemicals released during breakdown of cells, or changes in body chemistry resulting from the chemical load on the kidneys and liver.

Of course the chemotherapy drugs themselves aren't the only thing in my body during treatment. I take the antianxiety drug Ativan to reduce nausea and apprehension on infusion days and other times when I'm not feeling well. I also take the antianxiety/antidepression drug Paxil to manage associative nausea. I've read that anxiety is a big factor in the conversion of short-term memories to long-term storage. That's why people remember stressful events like the Challenger explosion or September 11th so clearly. Researchers have administered antianxiety drugs to prevent post-traumatic stress disorder in victims of war and accidents. I suspect that the antianxiety drugs that I take for nausea likewise interfere with long-term memory. It can be a blessing, since this aspect of chemobrain dims my memories of hospitalization and sick days.

I feel chemobrain most intensely for about a week after each infusion. It gradually fades away over the next couple weeks, and when I get a break from chemotherapy I start to feel really good as my mental abilities return. I often experience bouts of creativity and ambition as if I've been on vacation and just returned to an old problem with fresh eyes.

From talking to other cancer survivors I've learned that chemobrain can be a long-term problem. Many people experience memory impairment for three years after finishing chemotherapy or never recover completely. Being that my job and personality are so dependant on my mental abilities I was frightened that I would lose my intelligence permanently. But during my period of remission I felt at least as smart as I ever was -- maybe even smarter since I've gained wisdom and coping skills from my struggles. So although I still feel hampered by chemobrain I expect that I'll return to my usual self whenever I can get off of chemo.

What to eat

2007-04-06T13:21:00.000-04:00

One of the side effects that everybody expects from chemotherapy is nausea and vomiting. I've been fortunate that in 2-1/2 years and three rounds of treatment I have never vomited from chemotherapy. I have had to deal with nausea ranging from a slight loss of appetite to "ugh I feel sick and can't bear to think of food".

Some of the advice that I was given was to try to stimulate an appetite by preparing my favorite foods. I've learned that that can be a bad idea. My first round of chemotherapy involved 6-hour infusion sessions, so I needed to eat something before and during the infusion. I chose some of my favorite snacks and meals: donuts, bagels, grape juice, applesauce, ham sandwiches. Unfortunately after a few weeks my body began to associate those foods with the sickness that I felt from the infusion. Whenever I saw or thought about them I suffered from associative nausea.

Some of those foods I have managed to disassociate from chemotherapy, but grape juice and applesauce still turn my stomach. I also have strong associations with smells: roasting coffee beans and certain brands of pizza remind me of snacks I ate on the days after chemotherapy.

My advice is to choose foods that you moderately like but not your favorites. For me, this means that if I must eat during chemotherapy I stick to snacks like pretzels, animal crackers, and apple juice. I totally avoid my very favorite foods (sushi, steak, certain desserts) on days when I'm feeling sick from chemotherapy. My current chemotherapy regimen takes only an hour to infuse, so I don't eat anything during that time.

One of the lessons that many people learn from fighting cancer is to enjoy all the little pleasures in life. Eating good food is high on that list, and the threat of weight loss from chemotherapy often means a license to eat as much as you want. Good nutrition is also important for staying healthy, so you should consume wholesome and high-quality foods. When I'm free of nausea, it's nice to be able to indulge in fine meals and desserts. Cost can be a concern, but I economize by getting restaurant meals as takeout (saving on beverages, side dishes, and tips) or learning to cook more myself.

I have also benefited from a couple of medications to alleviate nausea and stimulate appetite on those marginal chemotherapy days: Emend for the severe nausea from Camptosar and Marinol for the mild nausea from Xeloda.

10% chance of survival

2007-04-01T17:17:00.000-04:00

What does my cancer diagnosis mean? Will it be fatal? How long do I have to live? How will I feel as the cancer progresses? How, exactly, does cancer kill?

When I entered chemotherapy in September 2004 I learned that I would be receiving a relatively new anti-cancer drug, Avastin. It had been shown to improve the survival of patients with metastatic colorectal cancer. I looked up the drug information to find out exactly what to expect:

In studies, progression-free survival improved from 4.5 months to 7.5 months. Um, that doesn't sound so good. This new drug would add only 3 months to my life, and half of the patients were dead after 12 months. There's less than a 10% chance of surviving for 36 months. Chemotherapy wasn't likely to cure me, it would only slightly slow down the cancer.

However, these studies covered hundreds of patients. What condition were they in when they started? Most people with colorectal cancer were diagnosed in their 50's or older -- I was only 31. Many of them were probably elderly and not in great health overall. Would my youth buy me a better outcome? Is my cancer the same as theirs, or is mine genetically different and might it react better to treatment?

Maybe I can be in that 10% that outlive the studies. Maybe my youth will let me endure stronger chemotherapy and surgery. I don't feel like I'm dying -- maybe I'll live 2 years, 5 years, 10 years. Of course, even if I beat the odds and hold off the cancer for 5 years, that still means that I'll be dead decades younger than those people who develop cancer later in life.

My strategy is to act like I have 2 years to live. I'm not going to quit my job since I still need to pay for rent and food. I'm not going to be sad on every holiday, imagining that it's the last time I'll ever celebrate Thanksgiving, Christmas, or my birthday. I'm not going to stop dating -- I can still do fun things and get enjoyment out of life. Why should I quit trying to live while I still have things to do? What a waste it would be to act depressed and not make the most of whatever time I have left.

However, I should be realistic and deal with the fact that it's very unlikely that I'll reach old age. There's not much sense in overworking now in pursuit of early retirement. My career path might need to change. I have a PhD in chemical engineering and I want to be a professor. But that takes years of devotion, and the early years as an assistant professor can be rough. Can I live up to expectations while going through treatment? Would it be fair to take on graduate students when I might not be able to support them though to graduation?

Today I've been living 2-1/2 years with cancer. I've outlived my initial assumption of 2 years. In fact, I've kept that idea of 2 years as a sliding expectation. It's not just 2 years, but 2 more years. I'm in my third round of chemotherapy, after a period of remission tumors have reappeared in my pelvis and caused some suffering, but they seem to be responding to these drugs and (aside from the side effects of chemotherapy and radiation) I still feel pretty good and functional. I will continue to act as though I have 2 more years. I'm enjoying the annual National Cherry Blossom Festival this week, not with the sadness that it might be my last but with the knowledge that I've seen it twice before as a colon cancer patient and I'm still here, living my life as well as possible.

Into chemotherapy

2007-03-26T11:05:00.000-04:00

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

2007-03-24T08:18:00.000-04:00

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

2007-03-22T11:00:00.000-04:00

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

2007-03-19T11:43:00.000-04:00

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

2007-03-16T10:55:00.000-04:00

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

2007-03-13T17:45:00.000-04:00

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

2007-03-13T16:20:00.000-04:00

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.