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.

Clean

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.

On the cusp

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.

Reevaluation

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?