I was not much a fan of Ebert the movie critic, though I did rely on his reviews from time to time. I became a fan of Ebert the writer when I saw this post, “Nil By Mouth,” on his blog in January, 2010. He wrote about losing the ability to eat, drink and speak after his cancer surgery. He wrote about the sadness that came with not being able to jump into a conversation, to talk over dinner with a friend, and concluded with this note to his readers: “You don’t realize it, but we’re at dinner now.”

Writing, for Mr. Ebert, whether on his blog or in short bursts on Twitter, was a connection to the world, a conversation with his readers. And he did it beautifully. He wrote about his thoughts on politics, religion, art, and the favorite candies of his childhood. I found much of it fascinating, some of it irritating, all of it an education. He was clearly a man who loved to think about his life. I came back to “Nil By Mouth” a year after it was written, when I’d been diagnosed with cancer. Ebert’s attitude helped me. He didn’t write about soldiering on as a warrior in a battle against cancer. He just went on living. He found a voice even after he couldn’t talk, and he used it well. I liked that.

On April 2, Ebert announced that he was taking a “leave of presence” from his work, and would be cutting back but still actively writing and developing new projects. On April 3, he died.

I learned about his death on my Twitter feed. I read the announcement and said, “Not yet!” out loud, in a room by myself. I’ve said that too many times in the past couple of years, seen too many people make that transition into the final stage of an illness, preparing themselves for their last weeks or months, and then die too soon.

When I read about Roger Ebert, I sat down and thought about Jessica, who was in her twenties and had a beautiful 3 year old daughter. She told me, “What I hate most about all this is that my little girl probably won’t remember me.” Then she talked about trying to do a few more things to create memories for her child, and two days later she was gone. I thought about Bill, who took his son’s boy scout troop camping after his sixth round of chemo and made me think I could keep on going in the middle of mine. He had a recurrence a few months later, and started to talk about approaching the end, and then…there it was. I thought about Sherri. She was 35, with two young kids. She blogged on October 30 about not feeling so great and planning a talk with her doctors about treatment options for some new lesions on her spine, and on November 5, she was gone.

Too fast. I know there’s no real way to prepare for death, no way to predict when it will happen, but I’m reeling from this one.

The day before he died, Ebert wrote:

At this point in my life, in addition to writing about movies, I may write about what it’s like to cope with health challenges and the limitations they can force upon you. It really stinks that the cancer has returned and that I have spent too many days in the hospital. So on bad days I may write about the vulnerability that accompanies illness. On good days, I may wax ecstatic about a movie so good it transports me beyond illness.

I would have liked to read all of that.

This spring, I’m in surveillance mode. We cancer patients spend lots of time with doctors, even after active treatment. But my check-ups are gradually becoming fewer and farther between (that’s a good thing). Here’s the pattern:

I see my medical oncologist every three months. These appointments include bloodwork to monitor things like liver function and total blood count, and to monitor my CEA (carcinoembryonic antigen) level, which can be an indicator of tumor development. My CEA has never been higher than 2 (under 5 is usually normal, and patients with active tumors can see numbers in the hundreds or thousands), so it’s probably not a great marker for me, but it’s worth a check. I expect that I’ll continue to see my oncologist every three to six months for the next few years, and then less often once I’ve passed the five-year mark. Colorectal cancer, unlike some other major cancers, can be slow-moving, so I’ll be monitored closely for eight to ten years instead of just five.

For the first year, I had CT scans every three months as well, and then in November when things looked clear we decided to wait six months to do another scan. If this one (in May) is clear, we’ll probably wait a full year to repeat. There are no universal standards for this post-treatment surveillance. Some doctors may insist on three month scans for a while, some six – and some may want to start out with yearly scans. There are serious risks at play here. A CT scan is essentially a collection of lots of x-ray images, and that means the radiation exposure multiples accordingly – perhaps a hundredfold. It’s not something to take lightly, and there are people who develop secondary cancers as a result of all that radiation. I would be very angry indeed to learn that I had cancer because I’d been successfully treated for cancer. No thanks.

Then there’s the surgical follow-up. These appointments are with my colorectal surgeon, and I’ve been seeing him every six months. He started with a sigmoidoscopy to check post-surgical healing, did a full colonoscopy a year after my diagnosis, and has repeated the sigmoidoscopies twice since then. I had one yesterday, and got to watch the process on a monitor (the inside of my disgestive tract is now quite familiar to me). My anastomosis site has healed very well, and there are absolutely no signs of cancer in the area where it originally appeared. Well, that’s not quite accurate, as that original piece is now gone – but the surrounding area is clear. This is a very good thing indeed, because about 75% of local recurrences of rectal cancer occur in the first two years after diagnosis. 85% occur in the first three years, so if next year’s scope is clear, then my odds, in that respect at least, are excellent.

Let me just say that, while I very much enjoy my surgeon’s company, I am fine with seeing him every twelve months instead of six. The unpleasant part of a colonoscopy is the prep, which feels unending, but patients are typically sedated during the procedure, so once you’ve cleared the decks, you’re pretty much done. Sigmoid scopes don’t look at the full colon, just the first part, so they are office procedures. Upside – a bit less preparation. Down side – you get to see and feel the whole thing. The scope takes only a couple of minutes, but during that time the little camera is inserted in a tube, and in order to better visualize the area, the tube pumps air in. Air that has to, at some point, go back out. This means that the aftermath of the procedure is both painful and, eventually…loud. While my children find this amusing to no end, I’m not sure the other passengers on the subway would agree (when I decided to take public transportation, I clearly wasn’t thinking ahead).

At any rate, things are fine today, and I’m moving past a critical milestone in the process. What I think of as the “nuisance” problems – neuropathy in my feet and frequent flyer status in the bathroom – are continuing, and won’t likely change much. But it’s good to be alive.

I’ve been thinking about what I would write today for weeks now, considering all sorts of approaches to this date, and you know what? At the moment, I don’t have much to say. Two years feels, at once, like a long time and like no time at all. My life is essentially normal now, and while my continuing side effects remind me every day that I had cancer, I don’t live with the constant nagging fear that it will recur.

Last year on January 7, I ran a 5K and felt that I’d marked the occasion by proving that I was strong enough to run.

This year, I think I’ll mark the occasion by having a completely ordinary, unexciting Monday. I think that’s an even bigger sign of victory than crossing a finish line.

In the year and a half since my diagnosis, I’ve met lots of other people who have it much worse than I do. Two friends who were diagnosed at about the same time, and the same stage, as I was had recurrences and died over the summer. That makes my aching feet and bowel problems seem pretty trivial.

I don’t spend a lot of time thinking that what has happened to me isn’t fair. It could be a whole lot worse. It’s just that, for the past few weeks, I’ve been feeling kind of lousy, and it’s wearing me down. So if I seem grumpy or distant, I hope you’ll understand. This is nothing serious, nothing unexpected, nothing new, nothing to worry about. It’s a bump in a long road. It’s part of the tradeoff for survival, and I know it’s worth it. Every now and then, the residual effects from my treatment get in the way of my ordinary life. I don’t want to spend a lot of time talking about it. I don’t need everyone to listen to my woes; I get tired of thinking about them, and can only imagine you’d get tired of hearing about them. I’m writing this now only to give the people who are part of my day to day life a little context.

This cycle will finish, as it always does, and I’ll be feeling better soon, and I’ll get on with my (really very good) life. In the mean time, if I haven’t quite managed to offer my friends and family the kind of attention you deserve, I hope you’ll understand. I’ll be back soon, I promise.

And, in the end, it’s pretty great to know that I can make that promise. A year ago, I wasn’t so sure.

I had my 3-month checkup last Friday. It was completely uneventful, which is how I like ‘em. Bloodwork all looked good including my CEA, which was a lovely 1.2. And it looks like we’re going to move to yearly CT scans instead of zapping me with all that radiation every six months.

Neuropathy is still there, waxing and waning, but lingering nonetheless. I’ve come to accept the fact that my feet will never be the same (according to my oncologist, feet are less likely to improve than hands). It’s strange to think that I don’t quite remember what it was like to have “quiet” nerves. I’ve become used to a certain level of background discomfort that comes with the buzzing sensation. There are some tricks I can use to minimize it, and they work well – except at 2 a.m., when no amount of shifting my weight, shaking my feet or flexing my toes seems to settle things down.

My feet are mostly just annoying. The neuropathy in my hands is more frustrating because it inhibits my fine motor control. I drop things. I have trouble holding a knife steady. I fear that I’m going to have some unpleasant kitchen accident one of these days. I take some small comfort in the knowledge that large knives are the easiest ones for me to handle, so if I do cut myself, it’s more likely to be a nick with a paring knife than a full-out digital amputation.

The other consequence of this is a bit more difficult. I hoped that I would be able to get back to my jewelry work after my Cancer Year was over, but I just can’t do it well or safely right now. A jeweler’s saw is *very* sharp, and very small. Jewelry-sized metal stamps make a mess unless one holds them perfectly steady. Tiny connections in earrings and clasps are tricky to make with fingers that can’t feel what they’re doing. I tried to fix one of my own necklaces last week and mangled it – badly.

So, for the moment and perhaps forever, Stone Soup Jewelry will remain dormant. Things like this pendant are far beyond my fingers.

Someday, perhaps. If not, it’s still a reasonable tradeoff for survival.

One year ago today, I was in an operating room, anesthetized and oblivious to the hard work of a team of surgeons who removed a substantial part of my anatomy and (I hope), all the cancer with it.

It seems quite odd to think that a year has passed since that morning, a morning that was both frightening (will I die on the table? will they find more cancer that they didn’t expect?) and exhilarating (the bad stuff will be GONE, and I’ll be that much closer to survival). Some days, the memory of my hospital stay is incredibly vivid, and some little noise or scent will trigger a clear image of that week. Other days, I can barely remember what happened last year, and it seems as if it was all some sort of odd dream.

May 23, 2011 was a pretty momentous day. May 23, 2012 is perfectly ordinary. I’ve been doing some organizing and cleaning, working on figuring out the kids’ summer schedules, finishing laundry…mundane tasks that don’t ever seem to end. And that’s just fine with me.

I still find myself wondering, at times, how all this happened. I still catch myself waiting for cancer to be “over,” and I have to remember that there’s really no endpoint here. But with each one-year milestone, I feel as if I can put a bit more of the experience behind me.

What a difference a year makes, indeed.

My birthday’s on Sunday. This is a pretty terrific gift.

The emotional fallout from this cancer experience continues to surprise me. I was blindsided by the wave of depression and fear that hit just after treatment; I’d expected to feel a huge sense of relief as I walked out of my last chemo infusion, but that never really happened. Now, as I await the results of another scan and the possibility of bad news to follow, I feel oddly relaxed. I anticipated that this would be the most difficult part of “survivorship.” I was sure that I’d have to live with a few weeks of escalating anxiety before each scan, that the days between the testing and results would make me crazy with worry. Not this time, anyway. We’ll see whether my intuition is right when I get my results.

I did get a little bit of advance information that has helped me stay calm. I’ve seen my blood test results. I have blood drawn before every scan, to double check my counts and liver enzymes, and to check my CEA level. CEA is an acronym for carcinoembryonic antigen, which is a type of protein that’s often produced by cancerous tumors and also, strangely enough, by a developing fetus (hence the “embryonic” part of the name). Normal levels are generally under 3 ng/ml, and my CEA level this time was 0.7. That’s the lowest it’s ever been, so I’m feeling pretty good about my chances for clear scan results.

The catch, however, is that CEA may not really be a good marker for me, because I’ve never had a level higher than 2 ng/ml; that was the reading when I was diagnosed last January. Some tumors just don’t produce much CEA. Still, if I had a recurrence, it’s likely that my CEA would at least be trending upwards, or that my liver enzymes might be elevated if I had anything going on there. But blood tests might not indicate anything about a lung met, and rectal cancer does seem to like to head to the lungs first (unlike colon cancer, which seems to hit the liver and then the lungs). We’ll see. At least the first round of information I have looks pretty good.

So – I’ll sleep just fine tonight. I’ll probably have one rush of anxiety as I head into MGH, and I’ll be a little jumpy as I wait for my oncologist, but all in all I’m feeling strangely confident that I’ve seen the last of cancer. It’s possible that I’ve dug myself a nice deep well of denial here, but even if I have, I’m OK with that.

I’ll keep you posted. Right now I’m just happy to have the scan – and the nasty barium cocktail I have to drink beforehand – out of the way. (Why must it be that every major diagnostic test for CRC requires us to drink large quantities of some really foul liquid?)

If someone has a gun to your head, you’ll surrender your wallet pretty quickly and hope that you don’t get shot. It’s only later that you realize that you’ve not only lost the cash you had, but that you’ve got to replace all your credit cards, your drivers’ license, the photos of your kids…that takes a while, and it’s more work than you expected. Plus you now have to worry that the mugger knows where you live.

This is what it’s like for cancer patients. Immediately after my diagnosis, I was in desperation mode. Tell me what I have to do to survive, and I’ll do it, consequences be damned. Now that the bad guy is gone (as far as I know), I have to face the aftermath.

There’s no way around it: chemotherapy drugs are, basically, poison. The hazard warning labels all over the pump and infusion bags and needles drove that point home. Here’s some evidence: last June, early in my treatment, I managed to stick myself with the needle from my port as I disconnected my 5-FU pump. Just a tiny bump – it didn’t even hurt. But there was a drop of chemo left there.

See that little black spot on my thumb? That’s the spot that the needle hit – I think I killed part of my finger. It’s tiny, but it’s been there for almost a year, so I doubt it’s going away. No ordinary needle stick, this one.

This is my long-winded way of saying that chemo is serious stuff, so it’s not surprising that it should wreak some havoc along the way. What that means is that, even if we think we’ve left cancer behind, most of us are left with some reminders. I don’t think I knew much about this before I was diagnosed, so in the interest of education, here are some of the basics.

Neuropathy

I’ve written quite a bit about the nerve damage caused by Oxaliplatin, one of the chemo drugs in the FOLFOX regimen. I expect that I’ll have some degree of numbness in my hands and feet for the rest of my life, though it’s still possible that it will fade a bit more. Most colorectal cancer patients have FOLFOX as a first-line chemotherapy treatment, so there are a lot of us out there with numb hands and feet. We’re not the only ones; some chemo agents that treat lung, breast, ovarian and prostate cancer, as well as multiple myeloma and Hodgkin’s disease, also cause peripheral neuropathy. There are lots of cancer survivors out there stumbling around and wearing ugly shoes because of this.

Bowel Management

Another part of the colorectal cancer journey, as you’d expect. Many CRC patients are left with permanent colostomies/ileostomies. Those of us who don’t have to live with a bag usually face other challenges, including incontinence, excessive flatulence (this is amusing for kids, but the novelty wears off after a while), painful bowel obstructions, radiation colitis, and painful hemorrhoids/skin irritation. Sometimes it’s a real adventure to face a meal and wonder what will happen next.

Damage to the Reproductive System

This is a big one. Radiation treatments are targeted, of course, but those rays can still do some damage along the way. Add chemo to the mix, and many women end up with damaged ovaries, which means they’re thrown into premature menopause. This can be devastating for younger women who have to add infertility to the list of cancer-related losses. It also means that some of us face serious concerns about bone health, and experience menopause symptoms like hot flashes, mood swings and significant sleep deprivation that are more severe than usual. Men who undergo radiation for CRC often experience erectile dysfunction and urinary incontinence, as well as some altered hormone levels and possible infertility. Then there’s the whole spectrum of sexual issues that come along with cancer treatment in general; that’s a huge topic deserving a post of its own, and not something I want to address now, but I know that these worries are significant for almost everyone who’s lived with cancer.

Lymphedema

A problem for many breast cancer survivors, this is a possible consequence for anyone who loses a number of lymph nodes during cancer surgery or radiation. Lymphedema is a build up of fluid that can cause painful swelling, restriction of movement, and irritating feelings of itchiness or tightness in the skin. It doesn’t tend to arise for many CRC survivors, but it’s a problem after lots of other cancer treatments.

Chemo Brain

I’ve written about this. It’s real, and it’s the excuse I use for my consistent inability to find things, remember what day it is, or finish reading an article in the New York Times magazine.

Depression

I’ve written a little bit about this, too. It ambushes lots of cancer survivors, and it can be tough to face depression when you think you’re supposed to be thrilled to be alive, rejoicing in your survival. There’s help out there. If you know someone who’s lived with cancer and can reach out to talk about feeling depressed, do it. Sometimes it’s not easy to recognize what’s happening in your own brain.

Fatigue

This one seems logical. Cancer treatment ravages the body. We don’t just walk out of our last chemo infusion and dance down the hall; it can take months, or even years, for some survivors to get past the fatigue. Sometimes it’s a component of depression. Fatigue also comes hand in hand with hormonal changes, anemia, pain and some of the other souvenirs of cancer treatment. Good nutrition and exercise can really help here.

There are more lasting effects to consider, but these are some of the big ones. I’ve faced some of them and been lucky to escape others. And what I’ve learned along the way is that it’s critical to be a strong advocate for yourself whenever you’re thrown into the health care system. Lots of these post-treatment effects can be managed with medication, physical therapy, psychotherapy, and diet. Finding the solutions is a matter of asking the right questions, which isn’t always easy. I want to write more about that.

I’ve managed to escape from the guy with the gun. I’m still replacing the things he stole. But I’m gradually learning that I can live without some of those things, and live pretty well. I’ll take that.

I’m working on it, I promise. It’s just that right now, I’m facing the small challenge presented by some sort of virus that has me dragging around, and the larger challenge presented by some of the consequences of treatment that are going to require more management than I expected. I’ve got another scan coming up at the beginning of May. I hope it will bring good news to remind me that the challenges I’m facing now are a reasonable price to pay for getting to live.

So, in the works: a post about managing the many medical decisions that come after cancer treatment ends. There are still lots of them facing most patients, and I, for one, wasn’t prepared for that. More soon.