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.

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.

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).

Second recurrence

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

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

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

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


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

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

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

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