Bowel obstructions

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

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

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

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

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

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

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

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

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

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

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

December 2009

April 2010

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

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

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

I want to eat.

Life lost

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

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

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

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

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

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

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

I start a new course of chemotherapy on Monday.

Ostomy care for sensitive skin

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

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

Those fiendish cells

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


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

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

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

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

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

Unenlightening

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


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

Enlightening

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

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

Unenlightening

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

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

Deferred maintenance

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

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

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


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

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

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

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

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

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

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

CyberKnife

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

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

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


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

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

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

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

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