my semicolon

Not sure that word really works, but I’ll go with it.

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.

And…breathe. My last set of scans showed no signs of cancer.

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

I had a CT scan on Tuesday, as a 6 month follow up to my November post-chemo scans. I’ll get results tomorrow (Friday) afternoon. I thought I’d be a nervous wreck right about now, but, strangely, I’m not.

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?)

Imagine that you’re out for an evening walk. You pass a dark corner, and an armed man leaps out and says, “Your money or your life!”

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.

More and more often these days, I find myself thinking through part of a blog post, considering it for a while, and then getting distracted and moving on. It’s a good thing that life is getting in the way of my thoughts about cancer, and that I’m able to do things now that keep me busy enough to be distracted. But it also means that I’m not doing what I resolved to when I started this blog: chronicling the process for myself, and sharing information to help other people whose lives are interrupted by a cancer diagnosis.

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.

If you have a few minutes, please take the time to call your Congressional representative about H.R. 4120. This is a small provision introduced by Charlie Dent, a Republican from Pennsylvania, and cosponsored by representatives of both parties (it actually made my day to see some evidence of real cooperation between parties, even if it is on an isolated issue). I can promise you that there’s no political controversy here. The bill is very simple – it proposes a waiver of coinsurance fees for Medicare patients whose screening colonoscopies involve the removal of a polyp.

In a nutshell, this is the problem:

There’s a provision in the Affordable Care Act that guarantees full coverage of preventive screening services such as mammograms and colonoscopies. That’s good. We want to remove barriers to those tests, to make them accessible to as many people as possible.

But here’s the catch. If, during the course of one of these screenings, a doctor finds a polyp, a lesion, or a mass that needs to be removed or biopsied, then some insurance companies consider the procedure a “treatment” rather than a screening, and copays can kick in. That sometimes means a surprise charge of a few hundred dollars – enough to deter some patients from having the test in the first place. This situation is confusing for doctors and patients, and really defeats the purpose of the “free screening” guarantee.

H.R. 4120 would remove that obstacle for Medicare patients, and because most people having colonoscopies are over 50, this is the critical patient population. Senior citizens shouldn’t have to worry about coverage for a potentially life-saving procedure.

The phone call takes about three minutes. I called my representative this morning and spoke with one of her aides, who was not familiar with the bill. I’m willing to bet that a series of calls within a few hours will make sure the issue gets some attention. The advocacy organization Fight Colorectal Cancer outlines the very simple steps for making the call on their website here. Click away, and thanks for taking the time to make the call.

I know, I promised you a post about colonoscopies. But the past few days have been unseasonably warm – 70 and 80 degree temps in mid-March – and so I’ve been a bit distracted.

I had a rough morning getting my kids out the door (I’m sure everyone is settled in at school and is just fine now), and was feeling really frustrated. Then I looked back at my blog archives and realized that, at this time last year, I had just finished chemo/radiation and was thinking about my upcoming surgery. No matter what, this March is MUCH better than the last one.

With that in mind, I’m heading outside for a bit to enjoy the sun and warm air. I think that, after surviving cancer, I’m supposed to take advantage of days like this. I can sit inside and write tonight.

Happy Spring!

Ok, I’m back. My next couple of posts will be written with my goal of colon cancer “awareness” in mind. To that end, I’m going to give you some very basic information that will, I hope, help you understand why it’s so important to think about preventing colon cancer.

An article I read yesterday referenced a recent study sponsored by a health advocacy group in which 39% of the people polled did not know what their colon was. They didn’t even recognize the word. How on earth are we going to get people to understand colon cancer prevention if they’re not even sure what body part is involved? Yikes.

I’m going to try to give you some very basic information about what your colon does. Now – I understand that the anatomy and function of the digestive system is not exactly cocktail party conversation. Perhaps you’d rather not think about what goes on in that part of your body. But here’s the thing. Body parts are there for a reason, and the human body is a pretty incredible system. In the normal course of business, your body does some things that don’t look or smell very pretty. You blow your nose. You have ear wax. You bleed. You burp. And, of course, you urinate and defecate. These are not recreational activites (well, not for most people). They’re vital functions that keep you alive and healthy. So get over any embarrassment you’ve got about it, because everyone does this stuff, and needs to. Despite the fact that poop is the butt of all kinds of bad puns and jokes (see what I did there?), it’s actually pretty important.

Let’s talk about our friend the colon. It’s the last part of your digestive system, and is about 4 to 5 feet long. After you’ve chewed and swallowed your food, your stomach produces acid that begins to break the food down. Next, your small intestine produces enzymes that continue the breakdown process and allow your body to absorb critical nutrients. After that, the colon (large intestine) finishes the job. Your colon absorbs the last of the water and synthesizes most of the electrolytes that you need to function. The good bacteria in your colon help your body process some important vitamins and help protect you from “bad” bacteria that might cause disease. Your colon helps you keep the important stuff that comes from your food, and filters out the bad stuff. It’s really quite useful.

Of course, the other thing your colon does is eliminate waste. As partially digested food moves through your intestinal tract, it changes from liquid to solid and then leaves. Getting rid of fecal matter means getting rid of potentially harmful bacteria and all the things that your body doesn’t need from your food. Your colon does the cleanup work that no one else wants to do. Your rectum, which is the last piece of the colon, is like a holding tank for waste, storing it until the last bits of water are absorbed and until there’s enough solid waste to eliminate, and once it fills up, your rectal muscles go to work and you have a bowel movement. That’s that. It’s important for the rectum to do its job, because you don’t want to have to run to the bathroom dozens of times a day to eliminate waste; it’s much more efficient to let it collect and get rid of it in larger quantities.

If anything in this process goes wrong, there are consequences. If your body doesn’t absorb enough water, you’ll have diarrhea. Yuck, right? Also potentially dangerous, because dehydration is a very, very bad thing. If your body doesn’t absorb enough water and/or electrolytes, your muscles can’t work properly, and neither can your brain. You can become disoriented, or lethargic, or can faint, or have a seizure. If you become constipated and your body can’t properly eliminate waste, all kinds of nasty things can build up in your system, leading to infection and disease, not to mention pain. It’s serious stuff, and should not be ignored.

This brings us back to the embarrassment issue. Lots of people have lots of different gastrointestinal issues, most of which are easily solved, and some of which are pretty dangerous if left untreated. But, because we’re so often embarrassed to talk about these problems, many of us don’t mention them during medical exams. I’ll let you in on a little secret: your doctor does not mind talking about poop. People don’t practice medicine if they’re squeamish about these things. Doctors and nurses have seen all kinds of bodies, and all kinds of body parts, and have seen and smelled and heard all kinds of unpleasant things. It’s really OK. Are you embarrassed to tell a doctor that you’re having trouble breathing? Of course not. You shouldn’t be embarrassed to talk about bowel probems, either.

Cancerous tumors in the colon and rectum grow very slowly, which makes them easy to prevent. These tumors usually begin their development as polyps (small growths), and those polyps can be discovered and removed during a colonoscopy before they become real threats. Left unchecked, they can grow through the intestinal wall, and then cancer cells can spread to other parts of the body – if that happens, then you’re in real trouble. If you start to notice symptoms like blood in your stool, or difficulty/discomfort with bowel movements, or changes in the frequency, size, consistency or color of your bowel movements, TELL A DOCTOR. I know – this is gross. But, trust me: it’s much better to spend a few minutes thinking about these things than to spend months in chemotherapy. It’s much better to have what you think is an embarrassing conversation with your doctor than to end up facing surgery that will force you to spend hours of your time managing your bathroom habits. That business about the rectum? If your rectum isn’t around to do its job, you will miss it dearly. You will start to contemplate a major bathroom renovation because it feels as if you spend the majority of your time there. An hour spent in the doctor’s office beats hours lost to bathroom time.

Tomorrow? Colonoscopy 101. It’s really nowhere near as bad as you think.

March is Colorectal Cancer Awareness Month.

I will confess that the word “awareness” is quite often a switch that turns off my attention. The plethora of awareness days, weeks, and months becomes so overwhelming that most of us are inclined to ignore anything but the causes that most directly affect us. On top of that, the concept of “awareness” as it’s most often applied seems virtually useless to me. It doesn’t do much good to be “aware” of something, especially a disease, if you don’t know anything else about it.

So, in the spirit of true “awareness,” I’m going to try to get some information out there about colorectal cancer this month. We’ll start simple, as I’m dealing with some other minor practical issues including a neuropathy-related foot problem – but more on that later.

Let’s begin with this. Tomorrow – Friday, March 2 – is Dress in Blue Day. You can get more information on the Colon Cancer Alliance’s web site here. If you can find something blue to wear tomorrow, please do it. And tell people why. We’ll take it from there.

I decided not to blog about the recent Susan G. Komen foundation/Planned Parenthood uproar as it was happening. I didn’t think I had anything really useful to add to the discussion.

I am, however, quite happy to participate in some of the conversation arising from the ashes of the scandal – a conversation about the way that the Komen organization and the pink ribbon campaign has taken the breast cancer cause way off track, because I think that affects all cancer patients.

It starts with money. There’s now a justified skepticism among consumers around the feel-good marketing that so many companies undertake by slapping a pink ribbon on their products. I think people are finally starting to understand that their money might be better spent on direct donations to cancer-related charities.

It’s not just about the money that’s undoubtedly wasted on “pink” products. The distortion arising from pink ribbon culture is just as much emotional and intellectual as it is economic. Pink ribbons are pretty. Breast cancer is not. Bracelets that say, “I Love Boobies” are (arguably) silly and fun. Breast cancer is not. Facebook campaigns that encourage women to post a cryptic status update about the color of their bras do not raise “awareness.” All of these things trivialize a devastating, life-threatening disease.

Pink ribbons aren’t all bad – they have been powerful tools. There was a time, thirty years ago, when newspapers wouldn’t publish stories about breast cancer, referring to it as “female” cancer instead. Thanks in large part to Betty Ford’s openness about her cancer treatment, and women who followed her example and encouraged a public conversation, that aversion is gone. Now, most people can talk about mammograms and breast reconstruction surgery without embarrassment. But taking away the embarrassment didn’t necessarily increase the understanding. The reality of breast cancer treatment can get lost in the pretty pink haze. Breast cancer chemo is pretty awful. Mastectomies can be horribly disfiguring. Reconstruction, and preparation for it, is a long and painful process; it isn’t just quick cosmetic surgery. And breast cancer still kills far too many women. We’re still a long way from a “cure.”

On top of that, the pervasiveness of pink has diverted the public’s attention away from other cancers. There’s a letter to the editor in today’s Washington Post that says what so many of us feel quite strongly: what about “my” cancer?

In a couple of weeks, it will be March, which is Colorectal Cancer Awareness Month. That finds me struggling to define what I want “awareness” to mean. It’s not good enough for me just to wear blue, or to plaster blue ribbons everywhere. I want people to understand what CRC is. I want them to know how to prevent it and how to recognize it. I want people to get over their embarrassment and talk about it. I know it’s a little easier to contemplate a mammogram than a colonoscopy. It’s a little more comfortable to talk about feeling a breast lump than it is to talk about seeing blood in bowel movements. But bodies are bodies, and they do things that aren’t always nice. I keep telling people who squirm at the prospect of a colonoscopy not to embarrass themselves to death.

And I want awareness to lead to action. That means encouraging people to consider changing their diets, to schedule colonoscopies, to talk to their doctors about possible symptoms. It means raising money for some specific purpose – to help families through the Blue Note Fund, or for charities that spend the bulk of their donations on research, not on administration and marketing. It means finding ways to volunteer my time to help other patients. Wearing blue – or pink, or red, or whatever color – is nice, but it’s not worth much if you don’t do something to back it up.

And, ultimately, what I’d really like to see is an end to the colored ribbons as a way of separating cancer patients from each other. I am not part of the pink sisterhood. But I would like to think that I have a pretty strong bond with my friend who is slogging through breast cancer treatment nevertheless. I would like to join forces with the women who are frustrated with pink, and work together to increase real “awareness” of all kinds of cancers, and to support research towards a cure for all of us.