Archive for November, 2009

Knowledge is power. Also disheartening.

November 30, 2009

After the first pathology report came in almost three weeks ago, I asked for a second opinion from University of Michigan on the theory that it wouldn’t hurt to have two people looking over the slides.

The U-M report came in today, and basically confirmed the findings of the first report. But in looking over the two reports together, and doing a bunch  of Google searches, I came to the sickening realization that I’m probably not at Stage 11A as I thought, but Stage IIIb, based on the size of the tumor and the possibility that the two pea-sized clumps found in the fat tissue of the colon got there because the original tumor was shedding cancer cells into the bloodstream — which means other cancer cells still might be lurking elsewhere in my abdomen and beyond.

(For those interested, I figured this out by looking closer at the code on the path reports, which lists this cancer at T3 N1c — T3 means it was a tumor of 5 cm or larger and N1c means that 1 to 3 cancer nodes were found outside the colon. Check out page 27 in this file to see how I came up with the IIIb designation. Previously, I came up with Stage IIa based on the fact that no lymph nodes were involved, but from what I can tell from this text, those two little clumps of cancer are, in their own way, just as nasty.)

Well. This pretty much nails the need for chemo. But the bigger issue here, really, is psychological. Stage IIA cancer didn’t sound so bad. Stage IIIb sounds much worse — and it is; just check out the survival rates here — they go from an 85-percent five-year survival rate for Stage IIa to 64 percent for Stage IIIb. (I should note those survival-rate numbers were from a study published in 2004, so those numbers might be better now.)

Of course, a big problem here is that this is a major case of self-diagnosis. While I’m pulling the T3 N1c code right off the path report, no doctor has actually told me what stage I’m at or said anything about mortality rates. So I may have my facts all screwed up.

I was actually suppose to meet with an oncologist last week, but that got cancelled because she had a medical emergency. Now I’ve got an appointment with another local oncologist on Monday in Kalamazoo and an appointment with another at University of Michigan on Tuesday. I’ll be very interested to hear what they have to say.

Getting a shoutout from the boss

November 29, 2009

After three weeks of scarcely giving my workplace a thought, I was both giver and recipient today of the Gazette’s news operation.

On the giver front: On the New York Times website today, I found an online, interactive graphic about food stamps that, if you clicked on the right link, provides county-by-county statistics for Michigan, including Kalamazoo. So I called the news desk to give them a heads up, and turns out that the Times food-stamp story is the lead story for Monday’s paper and the editor in charge tonight cheerfully agreed the local stats would make a very quick and fine addition to that story.

As we were chatting about this, he asked if I had read the column in today’s Sunday Gazette by editor Becky Pierce. Umm, no, I said.

“You don’t read the editor’s column?” he said. “Well, she talks about what a great reporter you are.”

Really?? Well, sort of. Here’s the column.

Post-surgery fashion

November 28, 2009

One reason going back to work right now would be a problem: I still can’t wear most of my clothes — or at least the pants.

The issue is the five-inch-or-so scar that runs from my navel to my pubic bone and is still tender. I also still have bruises sprinkled across my stomach from the twice-daily shots they gave me in the hospital to prevent blood clots.

For the first week, all I could stand to wear was a hospital gown or one of the nightgowns that Marcia bought me. Since then, I’m alternated between two sweatsuits that my mother purchased and Marcia altered — and, when the occasion calls for it, a pair of black dress pants with an elastic waistband.  I haven’t put on a pair of jeans in three weeks, or any pants with a front zipper.

For some people, the clothing restriction might be one of the more difficult aspects of the recuperation process. But for me, it’s more like a dream come true — the chance to wear completely comfortable clothes and have a perfectly valid reason other than laziness.

 

 

Happy Thanksgiving!

November 26, 2009

Here’s a column in today’s Gazette that I wrote for Thanksgiving,

Usually I’m the Thanksgiving czarina in the family, but surgery took me out of the service this year and Marcia offered to do in my place. She put on an impressive spread: Turkey, dressing, mashed potatoes, sweet potatoes, corn pudding, green beans w/ the fried onions on top, cranberries — and three kinds of pie: Pumpkin, apple and chocolate pecan. (The apple came from Colleen, who also there with her family.)

There were about 20 of us in all, including Colin Marshall — a family friend from Minnesota who is a freshman at Michigan State this year. He didn’t have the time and money to go home, so is spending the holiday weekend at our house. One draw: He and Kat have struck up a friendship through various family visits over the years, so he has somebody to keep him entertained.

There also is an interesting backstory to all this. Colin’s mother, Karen, was one of my best friends in high school. His father, Richard, is one of my best friends from college. Twenty-eight years ago this Thanksgiving, my then-husband and I introduced Karen and Richard, hoping they would hit it off. They did. They got married in 1985, now live in St. Paul, Minn., and Colin is the younger of their two sons.

I picked him up from MSU on Wednesday, and on the drive home, we talked about how I actually knew his mom and dad before they knew each other. He had a lot of questions about what they were like at his age now and about the early days of their romance. I had lots of fond memories of those days, and he was eager to hear them.

Of course, we took Colin to Marcia’s house, and I think he was surprised to meet a bunch of people — i.e., my sisters and parents — who remembered Karen very well. So instead of being in a house of strangers, it was more a group of people who felt a connection to him — and he felt a connection to them. It was very much a circle-of-life sort of experience.

 

 

The end of an era

November 24, 2009

Tonight was Kathryn’s cross-country banquet, and I debated about going. Sitting on hard benches in the school cafeteria for a couple hours sounded a little dicey, but this is Kat’s senior year, her last cross-country banquet and she’s team captain.

So I went, and it was worth it. She’s not the best runner on the team, but she’s clearly the Leader of the Pack for both the boys and girls. (When they called her up for her fourth-year varsity award, the coach said, “Somebody who needs no introduction …” to rauccous cheers from team members.)

She ended up with the award for the female runner “who best exemplifies the spirit of Kalamazoo Central cross country,” and her cousin, my sister Colleen’s son, won the male version of the award. Colleen took a picture of two together for Grandma and Grandpa Mack.

“What a beautiful daughter you have,” another mom said to me, and she was right. Long and lean with blonde hair and blue eyes, Kat can just sparkle — and she was sparkling tonight.

As we walked out, she got a little teary thinking about the end of her cross-country career. She’ll be at Michigan State next year, and competing at a Big 10 level is not in her future. I’m sure she’ll continue to run, but she knows it won’t be the same. “It’s the end of an era,” she sighed, and added, “I’m glad you came.”

I’m glad, too. When I initially got the cancer news, one of the first things that flashed through my mind was the fear that it would mess up Kat’s senior year.  Of all three of my children, Kat has been the social and the most involved in high school life, which makes this  last year all that more important. I really, really, REALLY don’t want it overshadowed by what’s happening to me. And tonight was all about her — as it should have been.

It’s all about the nap

November 23, 2009

People who’ve seen me in the last few days are duly impressed by my appearance — with the 10-pound weight loss in the past two weeks, I actually look better post-surgery. I’m also moving around surprising well. (Take that, hospital doc who predicted that I’d be walking like an old lady for a month!)

But while my recovery is zipping along nicely, I’m still far from 100 percent. Today, for instance, I didn’t get out of bed until 10 a.m. and then was back in bed by 3 for a 2-hour-plus nap. I still haven’t gone grocery shopping — all that walking seems a little daunting. And my appetite is about half of what it normally is. 

All that said, I’m definitely transitioning out of the most painful part of the recuperation process and moving into the more fun part. In the past two days, for instance, I’ve watched five episodes of “The Wire” on DVD and the next three episodes are teed up for Tuesday.’

 

Thinking about the power of prayer

November 22, 2009

As part of a very large, very Catholic family, it’s no surprise that I’ve been the subject of a lot of prayers this past month. And it’s gone beyond family — both my deskmate at the Gazette and a high school friend who now lives in South Carolina have added me to the prayer circles at their respective churches and more than one friend has sent me a get-well card urging me to rely on Jesus in my time of need.

To be honest, I feel a little ambivilent about the prayer thing, or at least with the notion that I can pray my way to a cancer cure. I buy into the vision that God’s will is not our will. As such, I’ve long been skeptical of the notion that God serves as an appeals court; I don’t believe that if you just pray hard enough, your wishes will be granted. To me, faith is about accepting what comes, rather than trying to persuade God to change course.

(The research also shows that prayer has limited ability to change outcomes. In 2006, the federal government concluded a six-year, $2.3 million study in which they tracked the impact of prayer on 1,000 patients with heart conditions, some of whom were assigned to prayer groups and some of whom were not. The people who got the prayers actually had slightly worse outcomes than the others — which the researchers attributed to statistical noise or performance anxiety.)

Moreover, I’ve always been perplexed at the fear of death among so many people who fervently believe in the concept of heaven. A central article of faith, it seems to me, is ready acceptance of the circle of life, the inevitability of death and a belief in life-everlasting.  My Catholic faith is certainly a reason that I don’t fear death. I fully accept that God is calling the shots on all of this, and it’s not my place to second-guess it.

All that said, it’s certainly a comfort to know that people care enough to send warm thoughts my way, and I do think that especially for some people — my parents, in particular — prayer allows them to feel they are doing something. It’s a comfort for both the recipient and the person doing the praying. So even though I don’t believe prayers will  MAKE me better in terms of zapping away cancer cells,  they do make me FEEL better.

Good grades from the surgeon

November 20, 2009

Had an appointment with the surgeon today, and it was basically good news. He’s very pleased with my recovery and said I was doing “10 times better” than the average bowel resection patient at this stage of the game.

I asked him why he thought I was doing so well.  My relative youth compared to his average patient? My good health? “I think it’s because you had such a good surgeon,” he cracked.

(There may be something to that.  My sisters Marcia and Colleen are OR nurses at Bronson Methodist Hospital, and they handpicked the surgeon –Daniel Stewart — as well as the rest of surgical crew. Certainly, I got the impression that everybody was putting forth extra effort, from the anesthesiology/pain management to the stitching of the incision. It was, I’m told, an textbook-perfect operation.)

Stewart and I also talked about where I go from here. I asked him: What’s the worst-case scenario? His candid response: That microscopic cancer cells got left behind in my belly fat or have already migrated to my liver.

That certainly makes a case for chemotherapy. But Stewart offered another concern: Chemo works best against aggressive, fast-growing cancer — which mine is not. So it’s possible that even if there are microscopic cancer cells in my liver and even if I have chemo, that won’t solve the problem. (A stat that I found tonight: 20 percent of Stage II colon cancer patients experience a reoccurance, usually in the liver.)

Of course, as the above statistic also suggests there’s an 80 percent that my cancer is over, done, finite.

So what to do, what to do? Stewart and I decided that his office will make an appointment for me with a local oconologist as well as an oconologist at University of Michigan, so I can get two opinions on what to do.

 

Mulling the Big C

November 19, 2009

One of the many lessons that I’ve learned in the past month is that cancer has a special dramatic punch in the health-news scheme of things.

A high school friend, for instance, was telling me last night how her parents freaked out about my diagnosis, even though my friend assured them that my prognosis is good.  But the c-word alone was enough to put them over the edge.

I’m not the only cancer patient who has noticed this. Sean Holton,  a 50-year-old with terminal brain cancer, and the friend of a friend, wrote about this on his blog. Here’s what he had to say:

I’ve been thinking lately about why the idea of the individual case of terminal cancer commands such enduring dramatic interest in our society. There are plenty of other life-ending cards people are dealt that are just as horrible and way more tragic in the end. People can be struck dead in a random instant in all kinds of ways — by lightning, in a car or airplane crash, in a shooting or fire, in an accidental fall from a great height. There are other incurable diseases that are equally or more debilitating over the long haul – those who suffer from multiple sclerosis and amyotrophic lateral sclerosis come right to mind. People have heart attacks and die on the sidewalk all the time. They get hit by buses. Or they suffer from mental illnesses that lead to suicide or fatal substance abuse. Or they waste away with Alzheimer’s disease.  And let’s not even get ourselves started on the tragedy of the individual deaths that pour forth from wars, genocides and natural disasters.

Right now, I’d rather be dealing with my terminal but potentially manageable brain cancer than to be in any of the situations I just listed. In that twisted sense, I feel lucky.

So what is it about terminal cancer, then, that seems to set it apart and get people so wound up, so personally invested, time after time? How is it that there is this ready-made narrative that people seem to know by heart and are able to latch onto so instinctively? I think it’s because people naturally respond to drama, and lots of cancer cases have all the classic elements that make for the best drama. At the core of the cancer drama is that it is viewed paradoxically as “incurable” but at the same time is known to be ”beatable.” There is sadness, yet it is mixed with hope. From that essential conflict, you can just cue up the basic, five-act narrative structure that has been a bankable formula for packing cinema multiplexes and theater houses since Shakespeare made it so popular in Elizabethan England, and going back even further than that to when it was perfected by the ancient Greeks. Act One unfolds by introducing us to both the too-young-to-die protagonist and the evil villain that is the devastating diagnosis. Then Act Two carries things forward by bringing in more complexity and texture, more medical details, the rallying of doctors, family and friends, the wearing of yellow bracelets and bandanas or the shaving of heads in solidarity. In Act Three, we get the marshalling of all available scientific resources to confront the dark force as we approach the climax of the uphill battle against all odds to “beat” the “unbeatable” disease. But dramatic tension is preserved because the final outcome is still unknown (this is crucial). Acts Four and Five take us through either the heroic recovery of the protagonist or his tragic death and the resulting fallout from either outcome. And either ending does make for a good story in a strictly dramaturgical sense. So that’s that.

Now let’s look at the other examples I mentioned of how death commonly expresses itself in individual human stories and consider how they fail on the level of sustainable drama:

1. Sudden accidental death of any kind. Failing: The play is over before it can begin.

2. Wasting incurable, diseases of all sorts. Failing: The outcome is known from the start, there’s not a lot of action to follow and the movie runs too long.

3. Mental illness, substance abuse and suicide. Failing: Too dark. People don’t like talking about it, and they just turn away. Nobody’s going to buy tickets for that.

4. Alzheimer’s and old age: See #2 and #3. 

5. Wars and natural disasters. Failing: These make good action movies, but individual human lives are mere props here. (See Joe Stalin: “An individual death is a tragedy. A million deaths is a statistic.”)

I don’t go into all of this to be blithe about the nature of my specific illness, nor to minimize the real human pain that cancer doles out to its individual victims and their loved ones. But all of those other manifestations of individual death and disability I mentioned deal out equally intense human pain at all of the very same levels. I saw a slice of this myself when I was coming out of my fog in the intensive care unit after the surgery to remove my tumor. Whole families would file past my door and down the hall, wide-eyed and wondering what they would find when they stepped past a curtain into their loved-one’s room — a loved one who most likely had suffered a sudden, unexpected heart attack or been mortally wounded in a common accident or shooting. And often I would see those families going back the other direction a few minutes later in tears, adults and kids devastated and crying, holding up each other for support as they walked away. Chances are, I thought, there is to be no further drama in those sad stories. The outcomes have already been written. No one will be shaving their heads in solidarity with those people. They’ll just be going to a funeral in the next day or two and scattering some ashes or shoveling dirt on a grave.

People ask me how I can remain so positive and upbeat about my situation in the face of such uncertainty. Part of the reason is that I don’t see my cancer diagnosis as a drama. I don’t conceive of it as an uphill battle against all odds to beat something that is unbeatable. As a 49-year-old man who already has experienced a lot to be grateful for and who has no immediate dependents, I’m not really interested in that kind of story right now anyway. Right now I see my diagnosis as something else entirely. It is a gift that will give me the opportunity to learn more than I thought I would ever know about the mysterious line between life and death. In the meantime, it will teach me to love the people I love even more, and to hold them more closely than ever. It will bring me incredible amounts of life-giving strength from the support of friends, past acquaintances and even total strangers. Many people don’t ever get that chance. They either just live, or they just die, and they never get to see what’s in between. But my diagnosis puts the idea of death in slow motion. It lets me pick up death in my hand and turn it over again and again to study it in its every small detail. I can hold it up to the sunlight each precious day that I remain alive and see it illuminated from any angle I choose.

It is as if Death has softly perched itself on my shoulder in the form of a wild and rare bird. In this form it will neither kill me immediately nor has it yet chosen to kill me slowly and inevitably – as it routinely does to so many people in its so many other, more fearsome forms. Instead, it will allow me to hold it for awhile and to look it calmly in the eye. It may even talk to me. After that, of course, the Death Bird may decide to burrow itself into my head and build another nest to lay a second egg-shaped tumor in my brain — and so kill me in that fashion. Or it may just fly away from me as unexpectedly as it landed, never to visit again until the time comes for it to return to me years or even decades from now; not as a bird, but in another of its myriad forms.

I hope the bird does fly away one day, and I think there is a pretty good chance it might. I guess then I will be able to say I have “beaten” cancer. But I will not gloat, because I will not have beaten Death. No one ever does.

 

Being an outlier

November 18, 2009

I was looking up stats today on colon cancer, and finally understood why the doctor was so shocked after my colonoscopy. 

Seven percent of Americans are diagnosed with colon cancer at some point in their life  but the median age of diagnosis is 71, and most patients are in awhile, so this really was a flukey thing.

Moreover, I don’t seem to have any of the risk factors: Smoker, heavy drinker, obese, heavy consumer of red meat. True, I have that pesky family history — great aunt, uncle and cousin, all from the same branch of the family, have had colon cancer, and there’s also a history of colon polyps in the immediate family. Yet the pathology report from my surgery says my particular cancer is nonheriditary.

From what I can tell from my Internet meanderings, my cancer would be classified as Stage IIA, and it appears that chemo usually isn’t recommended.  But my youth, at least in relative colon-cancer terms, is likely to alter that recommendation, I’m told.

I’m anxious to talk to an oncologist about all this. But I got a call today that my oncology appointment for Monday got canceled because of a medical emergency involving the doctor, who’s out for the next two weeks.  That’s turned her December schedule into a train wreck, and now I have a dilemma. Do I wait for a month or so for another appointment? Or go to Ann Arbor? There’s no real urgency here from a physical health standpoint but from a mental-health standpoint, I’ve got lots of questions I’d like answered.