Uncertain health

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

Those fiendish cells

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


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

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

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

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

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

CyberKnife

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

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

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


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

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

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

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

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

Those fiendish cells

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

Cancer quantified (2007)
Resurgence (2008)

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

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

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

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

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

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

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

The face of cancer – 2 years

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

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



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

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

Resurgence

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


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

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

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

Symptoms of rectal tumor

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

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

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


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

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

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

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

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

Professor of Colorectal Cancer

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

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

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

Surgery

I had surgery to remove the tumor from my colon on August 17, 2004. The surgeon said it was likely that the remainder of my colon could be reattached and function normally, but there was a chance that instead I would have to wear a bag to replace the function of my rectum. Eww, I thought, but I felt confident that the surgery would go smoothly and I wouldn't have such a fate.

I was scheduled to go into the operating room in the morning, but due to delays with other patients I didn't get out of the waiting area until late afternoon. I was feeling pretty weak since I hadn't eaten solid foods in two days and had nothing at all since midnight. It was so late that after I was taken to the preparation area there were no more nurses or attendants around. Eventually my surgeon came looking for me and had me moved to the operating room. Things were not going smoothly.

The next thing I remember was waking with terrible pain in my abdomen. I heard my mom talking to the nurses and pressing them to give me more pain medication. Eventually they gave enough to take the edge off -- apparently many common pain killers don't work well on me and I need unusually high doses to get relief. The anesthesiologist had also managed to knock the crown off my front tooth while removing the breathing tube. Again, things were not going smoothly.

Once I was more comfortable my mom asked if she could go back to the hotel since she was very tired. It was around 10pm by now, but it seemed strange that she wouldn't stick around for a little while. I suspected that the news from the surgery was bad and she was having a hard time hiding her reaction from me.

I don't remember whether I got the news that night or in the morning. The surgeon removed the primary tumor but it had already ruptured the intestinal wall and spread dozens of quarter-sized tumors throughout my abdomen. He said tumors like that were beyond his power to remove. My only hopes were chemotherapy and a radical new surgery being tried at the National Institutes of Health.

He had also been unable to reattach the good part of my colon back to my rectum. So the end of my colon was now routed out near my belly button and emptying into a plastic bag. I was not ready to deal with that. The hospital sent an ostomy nurse to teach me how to care for the site but I couldn't watch. Fortunately my mom was there and learned enough to guide me after I was sent home.

My recovery was painful but rapid. Dealing with the ostomy was icky, tricky, and embarrassing. But two weeks later I was able to tour around DC and get drinks at the Sculpture Garden with my sister. Then I flew to Michigan for a couple more weeks of recovery before starting chemotherapy.

Diagnosis: Cancer

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

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

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

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

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

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

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

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

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

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

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

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