Three Years and Counting

Three years ago today, I was in an operating room at Mass General with a team of people who were busy saving my life. Apologies for the melodrama, but I really don’t think it’s an exaggeration.

I remember that the morning of my surgery was beautiful and sunny. My husband and I arrived at the hospital by 6 am; my mother did her best to comfort my worried kids and get them off to school. Some time in the early afternoon, I woke up in the recovery room and asked the nurse whether I had a colostomy bag (I didn’t). I had a few struggles, and wrote about them here, but ultimately made it through just fine.

It feels at times as if the surgery was a lifetime ago and at others as if it happened just yesterday. Ultimately, though, this is a good milestone. 80 percent of rectal cancer recurrences are discovered within two to three years of diagnosis, and 95 percent within five years. While I will never consider myself definitively cured, my odds are getting better every day. My last round of scans in early May were clear, and my CEA level was as low as it’s ever been.

So I’m healthy and grateful and moving on, doing all kinds of things that I love. My friendship garden is waking up again. I’m writing about food and food policy on a new blog, I’m working part-time at a specialty cheese shop in Concord, MA and learning something new every time I’m there, and I’m doing recipe development and social media content management for the Massachusetts Cheese Guild. And I’m enjoying my family, looking forward to summer strawberries (soon!) and awaiting the arrival of our new puppy, who joins us tomorrow as a reminder that life really does go on. I do not – ever – take it for granted.

He's 4 weeks old here; he'll be a little bit bigger when we finally bring him home.

He’s 4 weeks old here; he’ll be a little bit bigger when we bring him home on Saturday.

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Does Anyone Know How to Do This Right?

The Internet is a dangerous place, my friends. It’s risky to put your words out there.

There’s been an interesting and, to me, disappointing little scuffle in the world of social media and editorial opinion over the blog and Twitter presence of Lisa Adams, who is in treatment for metastatic breast cancer. Ms. Adams has shared a great many of the details of her disease and medical care. She has written about her disappointment with “pinkwashing” and the misallocation of resources associated with awareness campaigns. She has said countless times that she appreciates expressions of love and support, but reminds us that those things will not change the fact that she’s going to die from this disease. She is in the hospital now, in treatment for some severe pain caused by bone metastasis (important note: her current hospital stay is about palliative care – pain management – but not about end of life care), and she’s Tweeting about it. A lot.

On January 8, Emma Keller wrote a piece for the Guardian that questioned the value of Lisa’s tweets and blog posts and the ethics of “dying out loud.” Apparently Ms. Keller thinks that Ms. Adams’ writing is a cry for attention rather than an honest attempt to educate readers. I’m not sure that matters. Ms. Adams is simply telling her story to anyone who’s interested.

Today, Ms. Keller’s husband Bill (who happens to be a pretty formidable voice in the publishing world, what with that stint as executive editor of the New York Times) has joined the fray. He seems to want to get in another little punch, and apparently resents what he sees as Lisa’s “warrior” approach to cancer (that’s a fundamental misunderstanding of her thinking, by the way). I’m not quite certain what other points Mr. Keller is trying to make; he seems to find it a bit fishy that Ms. Adams won’t tell us how much her treatment at Sloan Kettering costs, and that her doctors won’t offer an estimate about how long the treatment may extend her life (which is, of course, impossible to know). Where’s the problem here? I can’t imagine that this single cancer patient is the root of some deep-seated conspiracy at MSK to raise and then waste money on ineffective treatment. Are there legitimate questions about the cost of health care in the U.S., and about whether end-of-life choices might be informed by cost? Are there inequities in access to good medical care? Certainly. Is Lisa Adams doing something wrong? Not that I can see.

I find myself thinking, “Why are the Kellers picking on Lisa?” I suppose this is fair game, and that Ms. Adams chose to participate in a much larger conversation about cancer treatment and how it affects all of us, but this little round of written bullying seems strangely petty, and I’m sorry to watch it unfold.

I also feel as if I’d better clarify some of my own thoughts, lest anyone misunderstand this little blog. Here are the basics:

1) Cancer is bad. Having cancer is frightening. It is often, but not always, fatal. There’s not really any way to know how that will work out, which is also bad and frightening.

2) As I said just last week, different patients have different experiences. Some people decide from the get-go that they will take a warrior stance and remain optimistic to the end. Some people are immediately devastated and frightened and see no hope. Most of us, I think, end up somewhere in the middle, working to preserve and appreciate the strength we have, and sometimes feeling really lousy. There is no right way to have cancer.

3) Some cancer patients find expressions of positive thought, offers of prayer, and suggestions about treatment to be uplifting and useful. Some people resent them. In general, statements like, “Keep up the good fight! We know you can beat this!” are both inaccurate and ineffective, but they are usually well-intentioned. It’s not really possible to say the right thing, because – here we go again – there’s no right way to think about cancer.

4) Cancer treatment is very expensive. The fact that lots of people die because they can’t afford good treatment is heartbreaking. The fact that a great deal of money is spent on “awareness” campaigns and pink merchandise is disappointing, because that money would most likely be better spent on research or perhaps on funding the care of patients who can’t afford things like chemotherapy co-payments. There are legitimate questions to be raised about whether some patients are over-treated, and whether the value of a few extra weeks of life justifies the financial and emotional cost of that treatment. I do not believe there are “right” answers to those questions, either.

5) I can’t speak for anyone else. I write this blog because it helps me to work through my thoughts, and because I enjoy writing it. I share only things that I’m willing to make public, and I try not to share anything that I think could be embarrassing to me or my family. Social media is a gift to people who seek connections that can’t be made otherwise, and the virtual communities that support cancer patients and their families are essential to many of us. My blog gives me a way to offer some information to other cancer patients, which I do because I had lots of questions about what would happen and how I’d feel that my doctors couldn’t answer. I found answers to some of those questions in other cancer patients’ blogs, and for that I am grateful.

We’re all just out there doing the best we can.

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3rd Cancerversary

Today – January 7, 2014 – is the third anniversary of my cancer diagnosis. Depending on my mood, three years either feels like an eternity (was it really that long ago?) or like a fleeting moment (three years isn’t much in cancer time).

The results of my quarterly blood test are in, and everything looks more or less normal, with a CEA of 1.4. Good news for a cancerversary. Once again, life marches on, and ordinary is something to celebrate.

Still, it’s been hard for me to feel celebratory. I learned yesterday that Gloria Borges, one of the people I was lucky enough to encounter during the course of my treatment, died on January 5. She was 32. Gloria attacked her diagnosis with humor and determination, and directed her considerable energy towards making a difference. She was unflappable. She once told me that she’d come east and run/walk/crawl the Mount Desert Island Marathon with me if I could get myself in gear to do it (never questioning whether she’d be able to get through 26 miles, despite her Stage IV diagnosis and dozens of chemo treatments).

There were times, though, when I was cynical about Gloria’s attitude. She was quick to label herself a “cancer warrior” and talked a lot about the fact that she wasn’t going to let cancer defeat her or prevent her from doing everything she wanted, and she certainly lived by those words. But that doesn’t work for some people, and I am always mindful of the fact that, no matter how determined we are to fight, or how many positive thoughts and affirmations we use, some people just can’t “win.” Some people can’t muster the energy to get out of bed, and when we praise the people who dance before surgery, we need to be careful not to condemn the people who cry. There’s no right or wrong on this journey, and being angry or frustrated or sad about your illness is OK, too. I think Gloria fully understood that, and she treated other patients with kindness and grace, even while she continued to insist that cancer wasn’t going to slow her down for a moment.

Once again, I find myself wondering why or how another beautiful young person had to die. I didn’t know Gloria well, but I am one of the thousands of people she reached with her advocacy and energy. I’ll miss reading about her exploits and seeing her silly photos. And I’ll try to honor her memory by remembering how very lucky I am to have this wonderful life.

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Pain

Here I am again, popping in sporadically as life marches on. I think about cancer pretty much every day, but usually fleetingly, and almost never with fear. More and more often I’ll remember some part of my treatment and have the strange sense that all of that happened to someone else, or that I dreamt it.

Occasionally, though, I’ll get a little reminder that it was all too real when I have a few days of pain. Usually, what that means is just that my bottom is sore, and most often the discomfort is easily managed. Every now and then, though, the pain flares up and it gets pretty serious, and that’s when I wax philosophical about it.

Let me say two things up front: a) I’m just fine today, lest anyone be worried and b) I fully understand that whatever I’m experiencing bears very little resemblance in severity or frequency to the chronic, significant pain that end stage cancer patients face. But it does give me some insight about what it means to live with pain, and, I hope, some sympathy for people who suffer it.

It’s fascinating to me that physical pain can have such a profound psychological effect. When it’s bad enough, pain shuts down the brain, making it seem impossible to function in anything but the most minimal way. It becomes difficult to think past the sensation, difficult to focus on anything other than finding some sort of relief. I’ve had moments when I can feel myself trying to hold as still as possible, as if that paralysis will stop the pain in its tracks. I close my eyes, trying to shut it out, but this is akin to what young children do when they cover their faces to “hide,” figuring that if they can’t see you, you can’t see them. Nice try, but no.

While I feel OK now, last night was one of those cover-your-eyes-and-hope times. While I neither have nor want a large supply of prescription pain meds, I can see how easily people become addicted to them. In moments of acute pain it seems that nothing else matters, that you’d sell your soul to the devil for just a bit of respite. I can talk myself through that when I know that I need simply breathe through a moment of pain, or when my rational mind is still intact enough to remind me that I’ll be fine in the morning. I don’t know how I’d do it if I were facing the prospect of hours or days of unrelenting pain. I’ve had only two experiences that truly brought me to what I imagine that point is like: the spinal headache I faced after my surgery, and the night I had what was most likely a blockage caused by post-surgical adhesions. Those experiences were exhausting, not just because of the physical stress, but because the feelings of desperation and loss of control left me so overwhelmed that I couldn’t imagine doing or thinking about anything else.

I find it frightening to have these glimpses into the way that pain can utterly take over the body and mind, can steal hope and rationality, can make everything seem impossible. I understand why some tribal cultures conduct rites of passage involving significant pain. The overwhelming sensation that pushes aside all other thought and feeling offers a kind of cleansing, a temporary eradication of self. In the right context, tolerating extreme pain might ultimately feel like an achievement.

I don’t often talk about pain when I’m experiencing it, because it feels like I need to direct every spare ounce of energy towards breathing through it and doing the bare minimum I need to function. And once it has passed, I’m always amazed by the way the human brain can’t truly remember pain. I know that it happened, and I know its emotional impact, but there’s no way to recall the physical sensation. Which is a good thing.

Lest you think I’ve wandered too far with this contemplation, I’ll leave you with a smile from the inimitable Allie Brosh of Hyperbole and a Half. She re-imagines hospital “rate your pain” charts in this very funny piece (warning – contains a tiny bit of profanity). I think she got it just right.

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Thinking Through the Fog

Here I sit, on a Friday morning, surrounded by lists of half-finished tasks and a calendar that looks far too full, interrupting my ridiculous day to write something, or at least to try.

I thought of this blog for the first time in a long while precisely because I’m feeling so overscheduled and overwhelmed. I think it’s the cancer’s fault that I’m so scatterbrained. Of course, it’s in some ways a good thing that I entirely failed to notice or commemorate the two-year anniversary of my resection surgery on May 23. I’d thought about that approaching anniversary during the first week of May, in which I had surveillance CT scans and bloodwork that all turned up clear (see? I didn’t even remember to announce that here), and then let it drift by.

The fact that I let those milestones pass unnoticed must mean that cancer does not dominate my thoughts, and that I’m not consumed with worry about how long I’ll survive. It does mean that.

Sort of.

It also means that I find myself wondering more and more about just how many brain cells that chemo zapped, how much of my cognitive function was lost as collateral damage while the chemotherapy was doing away with lingering cancer cells. I spend far more time than I’d like re-reading sentences, abandoning newspaper articles and books part way through because I realize I’ve lost track of what I’m reading, pausing in my own writing to look up, shake my head, and search for a word or a phrase. This post is going to be a short one, and yet when I finish it I know I’ll feel wiped out and won’t be fully satisfied. I just can’t seem to untangle my thoughts. I can’t seem to think clearly for more than a minute or two before something else catches my attention, or before I start to feel overwhelmed.

I’ve written about chemo brain before. Things are pretty much still happening the way I described them in October, 2011. I don’t quite know whether to find that reassuring or frightening. I’ve read a bit about a study that suggests this kind of cognitive “fog” can last for five years, perhaps even longer, and so I’m not panicking yet. On the days when life marches along in an ordinary way, cancer treatment feels like ancient history, but when I stop and look at a calendar I realize that it’s only been about a year and a half since my last chemo infusion. So I will forgive myself for not yet being fully functional.

My experience with colorectal cancer is mostly behind me (I’ll pause for a moment so you can appreciate my clever little word play). I have some souvenirs that I’d just as soon not keep, but numb feet and an unreliable digestive system are manageable. I’d just like my brain back, please.

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Roger Ebert: 1942-2013

Roger Ebert is gone, and I’m really sad about that.

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.

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Surveillance

May 23 – just a bit more than two months away – will be the second anniversary of my TME surgery. Depending on my mood, it seems impossible that it’s been only two years, and equally impossible that it was so long ago. While I’ll never use the word “cured,” as time passes, my odds of cancer-free survival continue to increase, and that feels pretty good.

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.

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2nd Cancerversary

Today is the second anniversary of my cancer diagnosis. I thought milestones like this would carry some substantial emotional weight, but, strangely, today doesn’t feel particularly significant to me. I guess that’s good.

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.

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Just so you know…

So here’s my current problem, in a nutshell: I’m uncomfortable a lot of the time right now, but I feel that I can’t justify complaining about it. So I may seem a bit quieter than usual.

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. :)

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Still Standing

Sound the all clear signal once again.

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.

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