175,000 calories

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

115 Pounds (August 2010)

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

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

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

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

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

State of the Body

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

Left shoulder


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

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

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

Belly

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

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

Pelvis

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

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

Summary

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

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

Bowel obstructions

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

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

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

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

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

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

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

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

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

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

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

December 2009

April 2010

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

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

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

I want to eat.

Life lost

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

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

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

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

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

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

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

I start a new course of chemotherapy on Monday.

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.