We headed Up North the day after Christmas, and stayed there until January 2. On New Year’s Eve we went to a new restaurant in downtown Traverse City called The Franklin, and participated in their loud, raucous and typically exuberant New Year’s celebration. We got to see the cherry drop, and the fireworks fly, and hug and kiss perfect strangers while shouting, well, you get the idea.
I spent much of the week describing various activities as “A Journey, Not a Destination.” Losing weight, recovering from the cold Emily and I both came down with four days before Christmas, chopping wood, they were all journeys, not destinations. Why? I suppose because Mary and Emily reacted in a particularly negatively manner. They do that sometimes, and I always seem to know when and how to get under their skin. Call it a gift.
The holidays were busy, packed with visits and gatherings and parties, parties, parties. It’s a form of economic indicator, I believe. As the economy improves more people want to share their good fortune, or at least support the joys of the season. And there were plenty of reasons to be joyful. Mary’s continuing good health, Matt and Nora planning for their wedding, Emily enjoying her condo and working hard on the winery project, having a family business and starting to get the feeling we’ll all be around for a long time to enjoy it.
Even though Mary’s CEA count had risen at her previous blood test, to 590, up considerably from 510, but still down dramatically from the 1290 it reached before starting this particular course, Dr. Agnone maintained she is in remission. She feels good, and is presenting no symptoms.
Yesterday we had an appointment, and learned her CEA count had dropped to 550. Now, to keep things in perspective, that’s still twice what her count was when she started her first course of chemotherapy back in 2010, and 250 times a normal count. But she feels good, and we expect the next CT Scan will show that her tumors continue to diminish.
I’ve been doing some reading about advances being made in immunotherapy. Intrigued, and compelled by the CEA uptick, I created an online profile for Mary and discovered there are some 66 clinical trials for which she might qualify, many of which are in the Detroit area.
I discussed it with our friend Paul, the radiation oncologist, and he thought it was a good idea. One thing he explained was we didn’t have to move to Houston or New York to get into a clinical trial at M. D. Anderson or Sloan Kettering. We would just go for three or four days while they run tests, and then they would set up a program that can be administered here in Detroit.
That’s an encouraging sign, though Dr. Agnone told us yesterday that we probably wouldn’t qualify for any of the tests right now. The reason? They want active cancer cells so they can better gauge the effectiveness of the trial. Maybe one day, he told us, we can pursue that, but not now, because we don’t need to.
One thing we do know is we are just two months away from an amazing milestone. It will be five years since Mary was first diagnosed. Since we sat there, gobsmacked, looking at the bleak prognosis, the chemotherapy and hope for the best, the maybe you’ll get lucky and can have surgery, the horrific, unblinking, black-and-white numbers stating that the chance of her being alive in five years was a paltry 6%.
That may be what the experts said (it has since gone up to 12%, incidentally, which shows what great progress is being made in fighting this disease), but it’s starting to look more and more like we beat those odds. And if we can beat those odds, who knows what other odds we can tackle?
It’s a new year, one filled with hope and plenty of plans for the future. One thing we know for certain as we move into 2015 is surviving cancer is both a journey and a destination.
Last time I checked in, you may recall, Mary was on a new medicine, called Xeloda, which she took in pill form, along with one infusion of Avastin every three weeks. The treatment was working, but the side effects included blistering hands and feet which made walking excruciatingly painful. Dr. Agnone reduced the dosage by a third. This had the desired result of greatly diminishing the side effects, but it left a serious question begging. Would Xeloda work at the lower dosage?
This week we visited the doctor and got our answer. Yes. Mary’s CEA count dropped by another 300 points, and is down to 460, which is still high, but is definitely going in the right direction. Dr. Agnone explained there are three kinds of remission: stable remission, where the cancer has stopped growing; remission, where the cancer isn’t growing, and in fact the tumors are shrinking; and total remission, in which there is no evidence of cancer at all.
We’re at the midpoint, just plain old remission. Cancer isn’t active, the tumors are shrinking, and if all goes well in a couple months they will be too small to read with an x-ray. Maybe Mary will have another CT Scan at that time, and then she can take some time off for the holidays.
We’ve been busy, juggling work in the vineyard up north with chemo appointments. I’ve been cutting down trees. Mary and Emily dealt with Sophia, the last of our chickens. Maintaining her became untenable since Emily has moved into a condo in Traverse City, and Matt and Nora have bought a house there. Emily resolved to do the deed herself, and with Mary’s assistance, killed, plucked and cleaned the bird, and cooked it in Riesling. Circle of life indeed.
We’ve been busy, traveling to Montreal, and hosting friends from Williamsburg, VA and Wisconsin. Next month Mary’s going to Los Angeles for a few days, to see old friends and catch up. Maybe she will be able to tell them she’s done with chemo for the foreseeable future. That would be a nice development as she heads toward her fifth anniversary.
September 9, 2014
Before Mary started her new chemo regimen in July, her CEA count, which for the past four years had fluctuated in a range between 60 and 130, and had never before tested above 238, soared to 1046. I had missed that doctor’s visit, being up north trying to help out with the vineyard. When Mary told me that piece of news it brought me to a very dark place. But, for most of us, most of the time, the light comes back on eventually.
Mary’s new routine is a lot more user friendly, involving just one half-hour infusion of Avastin every three weeks. She is also taking a new drug, called Xeloda, in pill form twice a day for two weeks, and then has one week off. It has allowed us to keep to a busy summer schedule. Happily, in the early going especially, Mary wasn’t feeling any side effects at all. In fact, she began to doubt the treatment was even very effective.
So in a sense it was almost a relief when side effects did appear. Her hands had turned a brilliant red, looking, according to the marketing mythology, as though she was washing dishes without using Ivory Liquid. Worse, her feet became very sensitive. It felt, she said, as if her soles were covered with blisters. Walking became a painful experience. It also, Mary being Mary, became an excuse to go shoe shopping.
After consulting with Dr. Agnone they agreed to cut the dosage from six pills a day to four, and to take a second week off. Which means Mary returned to chemo yesterday, on her 60th birthday. She wore a pair of glasses in the shape of the number 60, and the nurses got together and sang “Happy Birthday” to her. Some of the other patients joined in. A sweet moment. Even sweeter, Dr. Agnone says Mary’s CEA count has plummeted more than 300 points, and her latest x rays indicate that the tumors in her lungs have shrunk. Her liver markers are solid, and all her other counts are right where they should be.
He ushered us out of his office with the phrase, “You’re on the road to remission.”
So, very good news. Of course, to keep things in perspective, 745 is still extremely high for a CEA count which is normally 2.5 - 5; the tumors may be smaller, but they’re still visible to the naked eye; and though being on the road to remission is a very fine ride, we’ve gone down that road before, only to hit a detour before we reached out destination. So we can temper our hope with realism.
Mary has always been so skilled at compartmentalizing her cancer, accepting it, dealing with it, fighting it, yet not letting it control her life. It was the same this summer, spending time Up North, hosting friends from both near and far. We went to Burlington, Vermont for a wedding, and chose to drive, staying in Oswego, NY, then driving through Adirondack State Park before taking a ferry from Port Kent to Burlington. A perfect three days in Vermont before a leisurely drive home, the only damper being Mary’s tender feet.
Since then it’s been one event after another, culminating tomorrow in a trip to Montreal. The Montreal Racquet Club is putting on a five-day commemoration of its 125th anniversary. I told Mary it was officially called the MRC 125th Anniversary and Mary Northcutt 60th Birthday Extravaganza. I suspect she doesn’t believe that’s true, but she’s going along with it to humor me.
Mary’s hanging in there, living life to the fullest. We attended a Garden Party fund raiser for the Belle Isle Conservancy this evening, and I just stood back and watched all the affection flood her way. Same with her birthday party last Saturday. When you are surrounded by friends, and love, maybe that is the best cancer treatment. It certainly helps you understand what makes life worth living.
July 14, 2014
Welcome to the New World
Mary had an appointment with Dr. Agnone today, where we learned the results of her latest CT Scan. Tumors in both lungs and the left lobe of her liver continue to grow. The largest one, in her left lung, can be measured in centimeters now, and not millimeters, and they seem to have grown by 25 to 50% since her last scan. If that weren’t enough, Mary admitted for the first time to feeling some discomfort. She said maybe it was just sore muscles, but she hasn’t really been doing anything physical. (Actually, she has been working in the garden, so maybe she did strain a muscle. Time will answer that question).
Obviously this wasn’t a good report, though Dr. Agnone still considers the growth to be slow. The next big test comes when Mary resumes treatment, probably next week. She’ll be going on a new regimen, involving a pill called xeloda, or capecitabine. She’ll take the pill every day for three weeks, and have one week off. In addition, she’ll get avastin by infusion every other Monday. There’s some question whether our insurance company will pay for this particular drug, and how much our copay will be if they do, but that’s okay. I haven’t really had much chance to talk to the nice BCBS Customer Service people since our insurance got cancelled last December. It will be nice to resume old friendships.
Speaking of which, we did just that last month when we took advantage of Mary’s “summer break” to spend some time in California. She and Emily attended the Herb Society of America’s Annual Meeting, along with my mothe,r whom Mary invited to join them. My Dad and I got to go golfing, which actually turned out to be fun (amazing what a different game it is when you aren’t consistently hitting balls into the woods).
We got to spend time with old friends and, miraculously, revive a friendship I had feared lost forever. We spent two nights in San Francisco, toured Napa a couple of times and had one amazing, memorable dinner which we will be talking about for years to come. When we came back we headed up to Glen Lake for the Fourth of July. Emily’s friends Matt and Laura joined Bryan and Rachel John and Peachy for a good and proper celebration.
We’ve been working hard on the vineyard property, putting in rock and water gardens and developing a landscaping plan. Emily is getting intimately involved with the viticultural aspects of the operation, which is what she has wanted to do. Matthew is pitching in when he can. He and Nora went off to Italy to attend a wedding and maybe plan one of their own. Before they left they bought a house in Traverse City. Emily is about to move into a condo there, as soon as they finish building it.
I think in some ways this is a case of Mary tiding up her kids’ affairs, just in case things head south. I don’t know for sure, but it feels that way. We like the shape of her new chemo schedule as it will give us a little more freedom for being Up North and traveling to Vermont and Montreal, two big events in the offing for August and September. Of course, the key to the treatment is its effectiveness and not its convenience. One reason we’re doing this one is to avoid oxiliplatin, because that caused neuropathy in Mary’s feet, and we don’t want that.
It this works, great. We can do that. If not, then we’ll enter the horse-trading stage, where Mary will have to decide how much sacrificing she wants to do to keep on living. In a way, it’s the sort of negotiations all of us do each day as we give up a little bit more of our dreams in exchange for the gifts of the day to day which constitute our existence. With cancer things are different. The sacrifices are greater, the consequences more severe, and the negotiator is always happy to just walk away from the table. In other words, cancer is Putin and we’re the Ukranian army.
For the time being, we move ahead. Pray that this regimen works and that Mary continues to enjoy good health. Well, good health except for that obnoxious thing called cancer.
May 9, 2014
I had planned to entitle this update “School’s Out For Summer,” as we approached a second annual summer off for good behavior, a stage where Mary’s tumors having been beaten down to the point of near invisibility, and her cancer having reentered the stage of stable remission, she could take three or four months off. It evoked a sense of normalcy reminiscent of our youth, when each year we were released from the stuffy old school room, bursting into the open to relish the freedoms of summer.
That was the plan, and there was no reason to think it wouldn’t have played out that way. Mary had her CT scan, and we waited for the results. A call from Dr. Agnone’s office that there had been only minimal changes since the last scan. Mary made some joke about how those minimal changes had better not be for the worse. We could joke about that sort of thing because we had this cancer thing down to a science. It was just routine, and we had made a lot of plans for the summer.
Then came the doctor’s visit, and the news that the change was in fact for the worse. The tumors were larger, which meant the chemo was no longer working. It was a reminder from cancer about who is in fact in charge. It isn’t Mary. It isn’t us, it isn’t Dr. Agnone, or nurses, or surgeons. It is cancer. Cancer is like a very good pitcher who changes speeds and angles, always keeping the batter off balance and off his game. Cancer lets you get used to one program, and then it changes the rules. Cancer never lets you rest.
Cancer is the most passive-aggressive of diseases.
And now cancer has messed up our summer. Mary will still take some time off, until probably mid-July, after another CT scan to see how rapidly the tumors are growing, and while Dr. Agnone comes up with another chemotherapy cocktail. Then we’ll start up again, and see how it goes. It’s a tough process, going from first thinking we’d licked this thing, only to learn that wasn’t true. Then we reached a point where we had it under control. Mary was living with cancer, and living well. Now, we’re entering a new phase, one where cancer, after taking a couple years off, is starting to flex its muscles again.
Just to be clear, the prognosis is not dire. There are other chemo options, and some new drugs that have come on the market, and if those don’t work there are always clinical studies. In fact, there was in article in today’s Wall Street Journal discussing a new procedure which shows a lot of promise. Even if nothing works, which is to say if Mary strikes out in every at bat, the tumors are growing so slowly that Mary has plenty of time left to enjoy the vineyard, gardening, travel, sunsets by the lake, living well and getting her revenge.
So that’s where we stand. To borrow from Winston Churchill, “This is not the end, this is not even the beginning of the end; but it is, perhaps, the end of the beginning.” Now, Churchill was referring to a different war, one which many might say was more significant than the personal battle Mary is fighting, and they would be right, from the perspective of history. But though we are just two little people piling up a hill of beans, this war is the big one. This battle is the only one that counts.
March 6, 2014
We celebrated a birthday this week, but we didn’t throw a party. Even if we had, the guest of honor would not have been invited. Not that it matters. He would have shown up anyway. He’s always there but he’s never welcome. He doesn’t need an invitation because he already lives in your house. In fact, he lives inside us, literally and figuratively.
The guest is cancer and the birthday was his fourth. It was four years ago this past Monday that Mary was first diagnosed with Stage 4 Colorectal cancer, and next week will mark four years since the doctor said she had about a year to live. So this definitely falls into the category of good news.
Mary has been in chemotherapy since October, and will probably be there through the end of April. After that, perhaps another summer off. She had a CT scan last month which indicated that the tumors in her lungs and liver have stopped growing, and in fact are shrinking, and in some cases breaking up. These are all good things. The only negative is her CEA count, which remained high, and while it fluctuates, its trajectory is ever higher.
Which means there really isn’t any new news. She still has cancer, and probably always will, but so far we have a regimen we can live with. She continues to handle chemo extraordinarily well. She has yet to get that washed-out “I’ve got cancer” pallor to her skin. And, as she jokes, she seems to be the only person in the world who gains weight while on chemo.
The challenge will come if the cancer adapts to the drugs she’s receiving, or she can no longer tolerate the treatment. That will constitute the next step in our journey. Fortunately, for the time being, there are no indications that this will happen any time soon. So we will beat on, looking forward to a few months off, with a number of weddings to attend, and a conference in California which will enable us to visit my folks, and of course, hours of labor in the vineyard Up North. It’s hard to think about summer when there are still three feet of snow on the ground, but it will be here soon enough, and soon enough ended as well, and before we know it there will be a fifth birthday, and maybe when we hit number five we will have a party.
December 19, 2013
In the Tall Weeds
It seems cancer has been springing up like weeds around us of late. Two invitees to our Christmas Party said they would attend if they weren’t knocked out from chemo. In one case that was the first we heard they were sick. It comes up quickly, and sometimes strikes you down completely, as happened to a friend’s brother. Just ten days between diagnosis and death. He never had a chance. His family was still in the information-management phase, the one where you try to decide who needs to know and how soon, before you figure out that it really doesn’t matter. Everybody is going to know because life as you once knew it has ended.
Another long-term cancer survivor was telling me about an article he read about changing attitudes toward cancer treatment, and how to keep people alive. I asked, “It’s just a matter of quality of life then?”
“No it’s a matter of quantity of life,” he stressed, meaning the longer you stay alive, the better your chances that they might have figured out how to beat the particular strain you’re fighting.
A fresh perspective. I’m not sure if I could do it. I don’t think I’m strong enough to put up with all the pain, the stress and the inconvenience; the trading of quality for quantity. Then again, I don’t have to. Because this story isn’t about me, it’s about Mary. She doesn’t seem to have those issues. She just trudges along the path God carved out for her. She successfully negotiated a successful Christmas Week program, so she won’t be wearing the pump on Christmas Day.
Her counts are going down and her markers remain quiescent. Dr. Agnone is pleased, and so are we. Our insurance was cancelled, but we found a new plan which will allow her to keep her doctors. So Mary is pleased. Our premiums went up by 50%, so Blue Cross Blue Shield is pleased. My new novel is being published tomorrow so maybe I can pay for those premiums. Everybody seems to be happy. There’s snow on the ground and lights on the tree, presents under and everybody coming home. We’ll go Up North until the New Year and start at the chemo lab just three months shy of four years of survival.
We stand here, on the threshold of the new year, surrounded by tall weeds as friends right and left get laid low. We can be there to encourage them, to help them back to their feet, and to assure them, well most of them, that there is life after diagnosis; it’s not just quantity, nor quality, but a combination of both that we strive for. It was Gerald Murphy who said “Living well is the best revenge,” but maybe we can change it to, “Living long is the best revenge.”
We’ll see how that one goes. In the mean time, Merry Christmas, everybody.
October 1, 2013
No doubt most people have already figured it out. We haven’t been reticent in our confidence that sooner or later Mary was going back to chemo. Her CEA count rose steadily all summer. Now, we’ve been over this several times. We all know that it isn’t the most reliable count, that the numbers can vary with each test, and that the rule of thumb is CEA +/- 30. But when it goes up all the time, that’s not a good sign.
And so it was as we reached the end our summer of fun and friends and hard labor in the vineyard, of travel to new places, making new friends and reconnecting with the old, as the days shortened so too did our sense of reprieve diminish. Last month we went back to Dr. Agnone’s office where we learned Mary’s CEA count was up to 250, the highest it’s been since she was first diagnosed. The CT Scan was ordered. I told Mary to study hard for this one. She just gave me one of those looks, the one that means “You can study for a CT Scan, you idiot.” I’m sure she meant it affectionately though.
We got the results last Thursday, the day after we returned from Tucson, a working vacation to spruce up Mary’s mom’s house in another bid to sell it, but also time spent with Martha and Becky, Mary’s oldest friends, and with the Babbs, our former neighbors. Frank has published a novel, so it was kind of a treat to have dinner and compare our publishers and our sales experiences.
The test results weren’t good. The tumors in Mary’s lungs are growing again, at an increased rate, and the activity in her liver, which we were always able to dismiss as likely ongoing post-operative healing activity, has finally defined itself as a tumor. The good news is no new colorectal activity. It is important to stress here that Mary doesn’t have lung or liver cancer, just colorectal cancer in those organs. The other good news is we can resume the same treatment we ended last May. Mary has a proven tolerance to this treatment, and more important, she has responded well to this particular cocktail of poisons.
So there’s no reason not to expect a return to stable remission a few months down the road, and maybe another long, fun-filled summer vacation. Mary remains upbeat and symptom free, her major complaint is the hassle of scheduling her chemo sessions around her book club, herb society and garden club meetings. Not to mention the holidays which are rapidly approaching. When should we have the tree trimming party? And the big Christmas Party? And can you believe it? She’s supposed to have chemo Christmas week! What a nuisance.
I suggest to her that maybe she’s got her priorities wrong. That she should focus more on the treatments and less on the ancillary activities. She gives me one of those looks again. And she’s probably right. Last update I mentioned the survivor’s guilt she’s been feeling, as people who have been stricken after her, whom she has counseled and consoled, have lost their fight too soon.
Then there are the others, the old hands like Bruce (whom we were privileged to visit this summer) and Tom, who are in the same boat as Mary. Their cancer will never go away, but they continue to live because that’s just what you do. It struck me, thinking of them, and of Mary too, that cancer isn’t just a way of dying, it is also a way of life.
July 13, 2013
Thursday we went to Dr. Agnone’s office for a routine check up. We discussed our strategy going forward. In a word, our strategy consists of doing nothing, which proves that, when it comes to cancer, the old cliche rings true. No news really is good news.
Dr. Agnone says Mary continues to be asymptomatic. All her markers are where they’re supposed to be, except for that pesky CEA count, which has ticked up again. But the CEA is notoriously fickle. The rule of thumb in the cancer world is CEA=+/-30. So since Mary’s count went up about 30 points, we’ll disregard it. Unless Thursday’s blood test shows another rise, in which case we’ll schedule another Pet Scan.
In the meantime, we continue in our summer of contentment. After we left the doctor’s office I suggested a late lunch on the water. We went to Brownie’s on a pleasant, not too warm day. There were just enough clouds to hold off the sun’s merciless rays while we sat on the deck and watched a flotilla of boats, large, small and gargantuan, float by.
Then last night we were on a boat ourselves, with John and Diane and Bryan and Rachel. They took us across the lake and down the river, to Bayview, where we sat dockside dining al fresco and listening to soft jazz under the sunset-turning-starlit sky, on a night which couldn’t have been more perfect if we’d personally drawn up the plans.
Today we head back Up North where Emily will put us to work in the vineyard, and the following week we’re off to Canada for a week of visiting friends and relaxing on the shore of the St. Lawrence River.
So the perfect summer continues, a time of contentment marred only by occasional loss, regret, and for Mary, a curious reversal of that standard cancer victim’s plaint. “Why me?” she wonders, though in this case it’s not the self-pitying question why she’s been selected for this challenge. Rather, the inquiry, posed with a sense of wonder, is why am I still here?
We’ve seen too many since Mary was diagnosed, whom she has comforted, counseled and encouraged, who have finished their race ahead of her. “Why me? Is this even real? Why do I feel so good? Why have I cheated the odds, and is it right or even safe to wonder?” Because one of the worst things about cancer is the way like time’s swift arrow it ever lingers at your back. It’s never over, but sometimes it goes away for awhile.
And sometimes others go away forever. Mary’s sense of survivor’s guilt was heightened when our friend Bonnie finished her fight. It came quickly, almost without warning, and took her just as fast. She was always so bright and lively, so alive, that just knowing her made you feel like a better person. Cheerful and upbeat, almost to the end, the world was a lesser place when she left it. She left Mary wondering, “Why me?”
Maybe the lesson, if there must be a lesson, is to never lose sight of the wonders that comprise our existence. Each sunset, each newborn day, every minute and every mile, should be met with wonder, should be greeted with the question, why me? Why have I been granted this gift of life?
May 16, 2013
I’m writing this in an empty house. No dog, no chickens, no people. It’s quiet, and gloriously empty. One of the reasons the emptiness feels so good is because it volitional emptiness. The house is empty because Mary has made her annual Mother’s Day retreat to Glen Lake. She took the dog and the chickens, and life is good. Volitional departure is so much better than that arbitrary form which is so cruel, so remorseless, and inevitable; though it will be a retreat we all must one day take, most of feel, as the Nubian slave did when he told Maximus, “But not yet, not yet.”
Yet it will come, and often not at a time of our choosing. A young friend lies in critical condition after an auto accident last Saturday. One moment his life is unfolding before him, the next, the subject has changed, for him, his family and friends. It can be so arbitrary when it comes, whether its taking is sudden or steady. It is the background noise to our existence, the sound track to our personal movie. Whether we think of it or not, it is there. What we do with our time while it lies at bay is what determines whether or not we have lived successfully.
Maybe, as Gerald and Sara Murphy were wont to say, living well is the best revenge. But don’t wait for life to sink its claws into you, exact anticipatory vengeance. Live well now, and all the rest will follow.
Mary was late for her Mother’s Day retreat because the first three days of the week were occupied with chemotherapy. When she finished on Wednesday she was finished indefinitely. Her CEA count, though still elevated, is dropping. Her liver enzymes are perfect, Dr. Agnone says. Her health is solid, her energy is good, and so, after nine long, boring months, her latest bout with chemo has come to an end. We will have a busy, active summer, flying to Minneapolis for a wedding, driving to Toronto to see friends and then flying to the Gaspe Peninsula, which is, well, one hopes the pilot will know.
We’ll spend much of the summer up north, putting down roots and digging up trees, watching our adventure unfold, living as well as we possibly can. If you’re around this summer, try to make plans to drop in for a picnic in the vineyard.
As for the future, only time will tell. The cancer is still lurking in Mary’s body, hiding out behind the occasional cell. How long it will stay hidden is anybody’s guess. We left the doctor’s office with the unspoken expectation that we’ll be back, maybe by the end of summer, but who knows? It’s not written in stone. There’s no law that says it can’t stay away, this time. But we might as well live as if it’s gone, gone for good. If it’s only on vacation, no problem. So are we.
March 7, 2013
Last Sunday, somewhere around noon, we passed the Third Anniversary of Mary’s diagnosis. Yes, it’s been three years since Doctor Doom-and-Gloom gave Mary a year, and offered “chemotherapy and hope it works.” The surprising thing is, the anniversary happened without either of us realizing it. Actually, that’s happened with our wedding anniversary, too. As a general rule, if both parties forget it, there is no harm done.
Mary had another CT Scan last month, and the radiologist who read the scan, our friend Paul who read it for a second opinion, and Dr. Agnone, Mary’s oncologist, all agree that the current regimen is working. She still has cancer, primarily in her lungs, and as everybody seems to delight in reminding her, it will probably be with her forever, and is incurable. But the chemo is knocking the tumors down. They started small and are getting smaller. This is a good thing.
The other good thing is Mary continues to tolerate chemo in remarkable ways. She just finished her thirteenth biweekly course, and after she left the lab she went straight to the Garden Club Luncheon, for which she had baked a Key Lime Pie and Gingerbread before going off to chemo. I remain amazed at Mary’s resilience. I am also stunned by how seamlessly Mary’s cancer has been woven into the fabric of our lives.
I still recall the chill, the terror and the utter foreboding of the first diagnosis. I will close with the first thing I ever wrote about Mary’s cancer. I wrote this one primarily for myself, as a way for me to try to deal with what had come out of the blue. This is how far we’ve come on our journey. There will be many more milestones before we are done.
The World Shifted
I'm sitting here surrounded by people sprawled enthralled by the omnipresent television. I’m killing time in the waiting room while my wife undergoes a routine colonoscopy. Turns out my buddy Dan is the anesthesiologist. He comes out and says “I just knocked out your wife,” and we share a laugh. I ask him when he’s moving in because he just bought a house around the corner. “Next week,” he says.
“No loud parties,” I joke. “I will call the cops. And tell your kids to stay off my land.”
He laughs and says “I already told them, ‘Remember the guy in Gran Torino?’”
He leaves, laughing. I leave in search of the cafeteria where I drink tepid coffee and eat a stale bran muffin, thinking how glad I am how little time I have to spend in places like this. Then I go back to the waiting room and discover the world has shifted on its axis.
They call my name. I go in. The doctor is there with color photos of all those places we’re not meant to go. “It’s cancer,” he says, abruptly and emphatically. I go back to the waiting room and read the same paragraph 20 times and find it interesting how the magazine flutters in my hands. Dan comes out, claps me on the shoulder and tells me, “Anything you need, any time, call me.”
She wakes up. I go in with the doctor. He barges straight in. I want to go first, hold her hand, but he’s in the way. I hold her foot instead. He says it’s cancer. She says, “Okay,” blandly, as if he’d just told her she needed a haircut.
I think, “Whoa, where did that come from? It wasn’t routine and why am I the last to know?’
At home she asks me to research rectal cancer online. It doesn’t take long to learn that colorectal cancer is about the best kind of cancer to get, if you’re going to get cancer. Very good survivability rates, depending on which stage you have. We agree she is probably Stage 1, maybe 2; 3 at the worst.
Next comes a battery of tests. No way to study for them, and she flunks every one; our life is already in transition, the days a mad swirl. It’s out of control; we go where we’re told to go, and do what we’re told to do. Monday Cat Scan. Wednesday pelvic sonogram. Before the latter, a visit to her primary care physician. She thinks it’s to talk about the cancer. He thinks it’s for a physical, which is why he’s so surprised when I accompany her into the examining room. “ No time for that,” we say. “We need to get to the hospital for more tests.” He brings up the Cat scan results, glances at us in dismay, and says “No charge for this visit. Here, I’ll give you copies of the report.”
At the hospital we read them. It catches my eye, “Findings in keeping with rectal cancer and hepatic metastases.” I’m not a doctor, nor do I play one on TV, but I don’t like the sound of this.
She goes in for the procedure. I text a doctor friend. “Is this as bad as it sounds?” He texts right back, “Call me if you can.”
The procedure over, I go in. The doctor comes. More bad news. Now things are really speeding up. We go home. I make her some soup. We sit in front of the computer again and look at our new, revised prospects. She keeps saying, “Well, it’s Stage 3 then. Not as good as 2 or 1, but we can get through this.”
I know that’s not right, but I don’t argue. This is not an argument I want to win. She keeps looking, then she says, dully, “Oh, it’s Stage 4.”
We go back to the survival odds page, as if maybe, who knows, they refreshed it while we were gone, new results from outlying precincts or something.
But no, it’s the same as before: Stage 4 – only 6% survive Stage 4.
December 31, 2012
It’s New Year’s Eve, and we have big plans. Sit around, maybe watch a movie, possibly a bowl game (I think there’s a new one on tonight, the Tidy Bowl–but I could be wrong). Maybe around midnight we’ll open a bottle of champagne, and switch channels to see if there’s any coverage of the “D Drop.” It’s the third year the City will commemorate the closing of a year with its own mid-city celebration.
It’s also the third year that we will have celebrated New Year’s Eve since we got the dreadful news. It’s the third calendar we’ve torn from the wall since we read those horrific words, “5% survival rate.” We sat numb. We wept. We prayed. We moved on. We lived. And now, another year has passed, and Mary is feeling as fine as ever. Dr. Agnone says she is handling her chemotherapy so well, he wants her to keep going. So she’ll start her fourth month of three treatments every two weeks. Her markers continue to drop, and there is no liver activity whatsoever. These are all good things. We won’t know what effect the treatments have had on the tumors in her lungs until we do another Cat Scan, probably toward the end of January. But the important thing is, we are alive, and we continue to live.
Mary got a dog for Christmas, a Black Scottie named Mason McDuff. We spend hours just laughing together, watching the dog tear up the house, pulling tablecloths and lamps to the floor, chewing up Mary’s mother’s fine china. Oh, the fun we will have! (More good news–three New Years later, and I still have my sense of sarcasm).
So many friends have seen their cancer return over the course of the last year. Bruce, Chris, Dave, Diane. For others, like Bonnie, the diagnosis is new; the journey is just beginning. For still others, the diagnosis is the same; the cancer remains. Some of them should be dead by now, but they refuse to cooperate. They just keep plugging away.
I ran into an acquaintance at a Holiday Party whose remission ended in May, around the same time Mary’s did. Quite a change from last year’s party, when he was exultant at his remission, and I was sure that Mary was finally, well and truly cured. He wasn’t happy when he learned it had returned. We talked about this. And about his feelings, his mood, his loss of hope and subsequent resignation. And then we talked some more. And some more. And I realized what a gift I’ve been given, to be able to stand there and listen to someone pour out his soul on a subject most people can’t wait to avoid. Oh sure, you want to ask “How’s it going?” and maybe get a thumbnail report on status and prospects, but you don’t want the unabridged version.
I know. I used to be that guy. In fact, I was the guy who was afraid even to ask the question Now things are different. For Mary and for me. Because, as PJ put it a couple summers ago, I “have Mary’s cancer, too.” And it’s not bad. We both move forward. We both take hope from the flipping of another calendar page. We’ll drink a toast to the year gone by, and to tomorrow, and then on January 6 we’ll meet the new year, same as the old year, and I’ll drive Mary to chemo. And then I’ll drive her home, and we’ll start to undecorate the Christmas tree, and friends will call her and invite her to lunch and go on walks and we will go on. We will continue to look death in the eye, and laugh at death when it finally blinks, again.
Happy New Year.
October 12, 2012
This past Monday, while I was sitting in the chemo lab with Mary, the man in the chair to my right kept remarking how slowly the day seemed to be moving. He knew all the nurses by name and showed complete familiarity with the system and scene. He wasn’t acting like one of those people who blame the entire world for their having contracted cancer, and are sworn to make everybody else’s life as miserable as their own. He was merely stating a fact as he saw it. Mary was sleeping and I was drowsing, and so I agreed with him that something did seem off.
“Well, I’ve been doing this for twelve years,.” he said, blankly, a statement of fact, an assessment of the reality of his world. I knew instantly what he meant, and understood why his day was moving so slowly. He was hooked up to the bags and was stuck there until they finished dripping. There was nothing interesting there. The thrill had long since passed for him. This was just the way things were. This was how he was consigned to live his life. I got that in an instant because I have been reeling with dealing with the same blunt reality. Even though I’m not hooked up to the bags, I might as well be because this is the brutal fact of my life as well as Mary’s.
The thrill may well be gone, but at least the process gives us, or him and Mary at least, a fighting chance. So I said, “It beats the alternative,” as much for my benefit as his. He gave me a look after I said that. It wasn’t hostile. It wasn’t argumentative. If anything, it was probably closer to pitying. As if to say, you really think that, eh? Give it time, my friend. This is as good as it gets.
Already halfway down that road, I wasn’t necessarily surprised by the sentiment though it did seem to violate the unwritten rule of always pretending that a day at the chemo lab was fun, fun, fun. Maybe he just recognized a fellow traveler.
Ever since Dr. Agnone pronounced Mary cancer to be “incurable” back in July, this is the way the world has rolled with me. The thrill is gone. There is no longer any there there. This is just the way our life will be. The doctor was confident that Mary could continue to live a good, quality life for many, many years. She tolerates chemo well, and the cocktail of drugs has been effective in the past, and there’s no reason to think it won’t be in the future. In fact, Mary got a call today from the doctor’s office informing her of the results of Tuesday’s blood test. Her CEA count has dropped precipitously, from 160 when she started this latest round of chemo, to 100.
No doubt you all recall that CEA stands for carcinoembryonic antigen, and that the normal count is somewhere between 2 and 5. Which means Mary isn’t out of the woods just yet, but the chemo seems to be doing its job again, and we have every reason to believe that by December her cancer will be back in remission.
That’s our expectation, because we are much too busy to allow this cancer thing to get in the way. Mary has been moving pretty much nonstop since she resumed treatments. She claims it is affecting her more than it did last time, though Emily and I both know this isn’t true. Last fall every other Monday, which was her long day then and is still now, Mary would come home and would be asleep before I could finish making her soup. And the soup was Top Ramen, so it’s not like making it was a long, drawn out affair. This time, she hasn’t even napped on Mondays. She just keeps going.
This was actually rather fortunate since Mary had agreed to allow our house to be included on a tour for a group called Questers during their recent convention. A couple hundred people passed through the house. In addition to cleaning furiously, and getting a lot of plastering and painting done, Mary also decided she wanted to serve refreshments for the tourists. Which she did. A massive job performed as a matter of course.
This weekend she is hosting an Alsatian Feast for some of the people who built the Equipment Storage Facility on our vineyard property Up North, along with some local vintners and some close friends. We’ll serve Choucroute Garnie and Backeoffe, and Tartes Flambees, washed down with local Dry Rieslings, in the newly finished building. Not quite a stone table overlooking acre after rolling acre of vineyard, which is the setting for feasts in every winery-themed romantic comedy ever filmed, but it’s a start.
Mary has a couple of meetings scheduled for later next week, and a Herb Society Tea on Saturday. After that she’s driving to Grand Rapids, where she will meet me at the conclusion of my bicycle trip from Traverse City. It’s just a short one this year, only 160 miles, but circumstances having prevented me from taking one at all last year, it will be a relief. We look forward to a nice dinner, and a pleasant evening at the Amway Grand Hotel, then it’s back home for another round of chemo. After that, a week on the Outer Banks with our friend Lori, then we descend into the maelstrom of holiday obligations and events.
And so we beat on, like boats against the shore–hmm, I rather like that. Kind of catchy, don’t you thin? We are rich in friendships and blessed with the warmth of faith and hope. Thanks for your support. Keep Mary in your prayers, and give her a call from time to time. Again, she’s handling chemo well and is always happy to go out
August 6, 2012
In my last update I mentioned that Mary’s CEA count had risen, which suggested her cancer had returned. It wasn’t definite, and according to all our doctors and advisors, not worth changing our travel plans. So we didn’t. We had a marvelous time, visiting wineries and staying in quaint German and Alsatian inns. We caught up with our English friends, Malcolm and Caroline and Nigel and Sabine. Emily was with us and Matthew joined us for four days.
There were times, especially after our friends had returned home, when Mary basically spent a day flat on her back, when Emily and I shared our fears that Mary’s cancer was back. I viewed with increasing trepidation a raven which seemed to lift off from a roadside meadow whenever I rounded a curve in our rental car, or we emerged from a stand of trees on another hike. I’m not given to superstition, but the symbolism grew irksome.
As our trip continued though, through Champagne and into Paris, Mary seemed stronger every day. Maybe the pace of the visit had been just too much. Maybe we all needed a day to unwind, and Mary was just more susceptible to the nap. After we returned home her energy continued to be high, and we never really slowed down.
Bryan and Rachel’s wedding was at the end of June, and we hosted Ron and Shelley from Montreal. There were cancer survivors from Toronto and Boston, and when we joined them for an impromptu swim party at Mark and Molly’s on the Saturday before the wedding, it was a case of A Cavalcade of Scars, all worn triumphantly by those emigres from CancerLand.
After the wedding there was the little matter of a colonoscopy before we headed up to Glen Lake for the Fourth of July. The test revealed no hint of cancer, and Mary’s blood tests were good. Plus our friend Paul told us the rule of oncological thumb regarding CEA counts was “plus or minus 30,” which was how much Mary’s count had jumped. So on to the cottage, where Chuck and Ruth Anne joined us.
Then we threw ourselves into the vineyard property, clearing a road through the woods and starting to work on a stone wall at the entrance. Meanwhile, Mary headed out to Tucson to get her mother’s house ready for sale. We’d rented it for a year-and-a-half, but now it was time to test the market again. But first a little TLC was in order to refreshen it. Mary was there for ten days, up at dawn each day, and working through. Her energy was tremendous, so much so that my inability to accompany her to her Pet Scan on the 24th was barely a blip on the radar. Mary Beth stepped up, and they spent a pleasant afternoon together afterwards.
I wasn’t really all that concerned about the test, telling someone I couldn’t imagine how it could possibly be positive–I hadn’t seen a raven in weeks. Mary was feeling too good, was too energetic, and we had a full summer planned working on the vineyard property. Such is the case with hubris.
We didn’t even bother inquiring about the results until we returned home last Monday. Mary called Dr. Reickert’s office, and the secretary said he had sent her a letter, and to follow up with her oncologist. “That doesn’t sound very good,” Mary said.
We pawed through the piled of accumulated mail until we found the letter. Among other things it said “There are multiple nodules throughout both lungs.” The largest of them showed “intense FDG activity.” FDG stands for fluorodeoxyglucose, which is the sugar most commonly used during a Pet Scan. The sugar goes wherever cells are most actively growing; the brighter the spots, the more intense the activity. The report said the “remaining nodules throughout both lungs are mildly increased in size from comparison and demonstrate range of FDG activity from none through moderate.”
There is also some indication that there may be some activity in the liver, though based on my reading, it is not definitive. But the lungs are pretty straightforward. Of course, it’s important to remember that Mary doesn’t have lung cancer, or liver cancer. She has colorectal cancer which has spread to those organs. Ironically, there is no indication whatsoever of any active cancer cells in the colorectal region.
We met with Dr. Agnone today and began to chart a response to this latest news. He has an interesting manner about him, treating cancer as a routine matter. He always cites someone he’s just finished seeing who has been at this twice as long as Mary has, and is doing fine. It’s all very reassuring.
Next Monday Mary has an appointment to get a new mediport installed. She had her last one removed in the spring. That was back when we had this thing well and truly licked and were only looking forward. Now, we’re back into it. Mary’s a little disappointed as it will be another scar, but as Emily told her while we were in Europe when Mary noticed that her blouse had slipped to reveal a scar, “That’s a war wound, not a blemish.”
And when Mary resumes chemotherapy on August 20, it will be a strategic repositioning of troops and neither a defeat nor a retreat. If all goes well we’ll be at this for four months, which means she’ll be off chemo in time to host our annual Christmas Party. In the meantime, I’ll be spending less time up north. There are a number of encroaching trees I was planning to cut down which just might have received a reprieve. At least for awhile. Few things in life are certain, but two of them are as soon as Mary finishes this round of chemo she’s going to resume beating the drums for that New Zealand trip, and those trees coming down, sooner or later.
In the meantime, polish off those prayer beads and get back to work. We’ll be in touch.
May 10, 2012
At first I was hesitant to use this title because I thought it might convey the wrong message, that we were back fighting cancer again, instead of the one I wanted to send, which was after nearly six months of remission, things had gotten to be so normal that we had returned to doing the sort of things normal couples do, like having little spats from time to time. Cancer was no longer a day-to-day companion, a parrot on Mary’s shoulder, squawking, “Awwwk! That she grows.” If anything, cancer had receded to the point of being something of an inside joke.
Then during a routine appointment with Dr. Agnone yesterday, Mary mentioned having a little colorectal discomfort. Agnone agreed she should make an appointment with Dr. Reickert. In the meantime, he took some blood to run some tests. He called today, saying he he’d considered waiting until we got back from our big anniversary trip to Alsace next month, but decided it would better to call now, to let us know that Mary’s CEA count has gone up, from 69 to 100.
This doesn’t automatically mean that the cancer is back, as we have noted previously and repeatedly that the test is not fool proof, that the counts can fluctuate dramatically with each test, and even though normal CEA counts should be below 5, they aren’t always, and we don’t know what Mary’s normal count was since they were never counted until after she got sick. On the other hand, it isn’t the most positive sign, either.
Our plan now is to go ahead with our trip–I just paid the non-refundable balance on the house we’re renting in Riquewihr today–and expect the best. Then sometime in July Mary will have another CT Scan, and then we shall see what we shall see. Probably the worst case would be that Mary would have to undergo another round of chemotherapy. Dr. Agnone mentioned during Mary’s visit yesterday that the woman in the next room had been given a diagnosis similar to Mary’s ten years ago, which means, though it can be a real nuisance, this sort of cancer isn’t an automatic death sentence. People can and do live with it, for a very long time.
I’ll let you know what happens next just as soon as we know it.
January 11, 2012
Mary had a busy week this week. Monday was her last really long chemo day. She couldn’t go home and nap though, because she had a lot of work to do planning a brunch for 15 set for Tuesday morning. Tuesday morning came, and Mary and Emily were making quiches and baking brie, and setting out tables and chairs. Okay, I was setting out tables and chairs. I pitched in where I could until the guests arrived. (I find that I become more like a cat with each passing year–when people start coming through the door, I sneak down to the basement and hide until they’re gone).
After the brunch ladies left we went back to chemo, then over to the produce market so Mary could buy herbs with which to make bouquets garnie for the Herb Society’s Annual Dinner on Wednesday night. Then, after chemo yesterday she met Kelly, Josephine, Kate and Emily at the Dirty Dog Jazz Café for lunch. The HSA dinner at Dylan’s followed that night, and, as Mary said to me this morning, “What a wonderful night of sleep that was.”
So we’re done with chemo. For the time being, Mary says. Forever, I correct her. We’re done forever. Her cancer is in remission, and it won’t be coming back. You can trust me on this one, because I’m a doctor. Well, not really, but let’s just pretend. We have a full winter, spring and summer planned, because you should always strike while the iron is hot, while both the spirit and flesh remain willing. We are gifted with today, but who knows about tomorrow, my medical pretension aside.
The other day Mary received a call from a friend at church who wondered if she could speak to another friend who had just been diagnosed with Stage 4 colorectal cancer. Mary was happy to do so, and called and gave her as much encouragement as she could. There is something about hearing what is going to happen from someone who has been there, someone whose voice is strong and cheerful, who has been to the precipice, stepped back and decided you might as well live.
It was a gift Mary has been given, to have this kind of knowledge, and a gift she willingly shared, to shine a light on the trail on which her friend has just embarked. It’s bizarre, really, that at any time there are some five million people in this country fighting cancer, yet when you get that diagnosis, you feel so alone. The world continues to spin, but somehow you aren’t part of its normal functioning. Everyone looks different to you, and you know, in time, they will look at you differently as well.
Yesterday counts for nothing, and tomorrow is a mystery beyond utterance. You have noone but yourself, and maybe your spouse and your children, though really, even if they’re there, their understanding is only on the most shallow of levels. They really can’t know what you are going through, what you are thinking, and what streams of consciousness flow through your brain. It is such a gift at a time like that to be able to hear from someone exactly what is going to happen, when and why, and to make the offer, “Feel free to call me anytime, for anything.”
That is a gift Mary has been given, and a gift she now is able to give.
Every year, when the press of the holiday season starts to wear, and the rampant consumerism rankles even more than it usually does, at the point just before I start crying, or throwing things, I’ll sit down and watch “It’s a Wonderful Life.” It’s the one time in the year when I allow myself to be emotionally manipulated. I go into it knowing my heart will be tugged, and tears will form in the corners of my eyes. More than knowing it, I expect it, and the year I don’t get that little catch in the back of the throat is the year I’ll have to start seriously thinking about hanging up the stirrups.
The preceding, in journalism speak, is known as “burying the lede,” because attempting to make the title choice pop-culturally relevant is not the real point of this update. No, the real point is to report on Mary’s visit with Dr. Agnone. As you may recall, her recent CT scan results showed nodules in her lungs had increased in size since January, and were “consistent with metastatic disease.” The doctor noted that the fact that the nodules had grown since January gave no indication whether the chemotherapy we began in August was working. He prescribed a Pet Scan, and the results were the reason for the visit.
According to the Pet scan, “tiny right upper lung nodules are seen without abnormal activity. These are too small to characterize on PET images.” Or, to quote Dr. Agnone, “Mary is in complete remission.”
“It’s always good to get good news heading into the holidays,” was Mary’s reaction, along with, “I knew I was feeling too good to be sick.” My own reaction was a little more muted, perhaps skeptical would be a better term. I’m still sitting here waiting for the other shoe to drop, for fate to stick the knife in just as soon as I let down my guard. Or maybe it’s just shame at having been so defeated since the middle of last summer when we found out we weren’t done after all.
For now, we are, although we’ll have another month or two of chemo. Agnone says Mary isn’t cured, and the cancer most likely will come back, but as long as she is handling it, we might as well finish the course. The further we knock it down, the longer her remission might be. Makes sense to me.
After all, there’s nothing sporting about cancer. There are no Marquis of Queensbury rules, no good sports principles. With cancer, you do want to hit him when he’s down. Rabbit punch? Just fine. Blindside hit? No problem. What the heck, we’ll even taunt cancer. We’ll run him out of town on a rail. Cancer will never eat lunch in Mary’s body again. There’s no law against bullying cancer, and when speaking to cancer, hate speech is not just accepted, it is mandatory.
I wonder now how long before our lives get back to normal, whatever that was or will be again. Or maybe they never will. Maybe we will never take another sunset, or sunrise, or friendship or family member for granted. Maybe we will continue to approach each Christmas as if it might be our last together. Or perhaps, in time, life will subside and the commonplace becomes ordinary becomes unremarkable, and we will forget what a difference a day makes.
Maybe, in time, we will forget these crucial lessons forged in the hearth of mortality. And maybe, just in case we do lapse into complacency, that won’t be such a bad thing after all.
We will never forget the kindness, support, prayers and love from so many friends, new, old and rediscovered. This has been the most amazing gift of all, and definitely one which won’t be taken for granted. As I type these words I can feel the tension finally slipping away, and I am starting to believe it’s okay to believe.
November 23, 2001
When the world shifts you learn to look at life in a different way. The little things that once caused so much frustration, the way someone cuts you off in traffic, or the cashier in a grocery store who would have to pick up the pace a bit to earn the title of automaton, somehow they don’t matter as much anymore. You learn to appreciate friendship, and to value those who show you that they really are. You learn to be awestruck by their many random kindnesses, the little gestures, the extension of a hand, or the offer of a shoulder to cry on.
Sunsets, though they never passed unremarked, become little miracles, the better to be savored. The clarity of late afternoon light, cutting through the haze to set a maple tree ablaze, to cast the autumnal brown of the oak tree vivid against the slate gray sky, you learn to treasure those moments. One came a few days ago, when Mary called me up from my office to “see the light,” and worthy is was of wonder.
The sight of the children across the street, acting out the storybook of their young lives, reminding us so much of our own children at that age, become a gift to be treasured. We stand behind our windows and spy on them, and want to give them the gift of eternal youth. Though we know, of course, that it is a false hope, a faulty dream. We learn to value the embrace of the church, the comfort of ritual, and the miracle of prayer.
There is so much to be thankful for. The kids are both home for Thanksgiving, and Mary will be cooking it again. That is a tradition we definitely want to preserve for years to come. We can be thankful that we are eight months and counting past the date our first doctor told us would be the end of counting. We can be thankful that today Mary told me not to bother going with her to chemo, because she planned to go shopping afterwards, for supplies for Thanksgiving, and for the Tree Trimming party we’ll host this Saturday.
I did meet her at the doctor’s office in the afternoon, to review the Cat Scan she had last Thursday. The good news is her liver is stable. There are no new lesions or growths, and what abnormalities there are are “related to surgery.” There is no sign of cancer in Mary’s liver, lymph nodes, colon or rectum. Unfortunately, the report also says “Several pulmonary nodules in the right lung have enlarged since January 2011, consistent with progressive metastatic disease.”
Dr. Agnone asks, “How large are the nodules?” The report doesn’t say. It says they’ve grown since January, but what have they done since July? That is the latest urgent question we need to answer, which is why Mary is going to get a Pet Scan next week. We can compare that to the one she had in July, and decide where to go from there.
Basically, it’s bad the nodules have grown since January, but it will be good if they have shrunk since she began her latest course of chemotherapy. Sometimes it seems like nothing more than a game, a cruel game refereed by a sadistic fate, who dangles the promise of release, only to push the goal line a little bit further down the field. Or, to put it another way, Mary is Charlie Brown, the football is remission, and cancer’s wearing Lucy’s dress.
So, we have something else to look forward to, another test, another exam, another consultation. But we do have things to be thankful for, not least, I suppose, is the fact that when I visited Frankisha at the Blue Cross Blue Shield walk-in Customer Service office today, she remembered me, remembered Mary, and remembered our case. Sadly, she asked, “Didn’t someone call you?” Apparently the person she spoke to who promised to resolve the issue called back to say she couldn’t do it. Frankisha called someone else while I was there, who said she’d take care of it. It is a process. How kind of the insurance company to provide these distractions, to take my mind of the battle with cancer.
Mary continues to run on all cylinders. She sleeps a bit more than usual, though she maintains she’s always been a napper. And that’s true. She continues to make plans for the winery, and I continue to dream of remission. Here’s wishing you, one and all, a Happy Thanksgiving. Don’t forget to savor the miracle of life, and the gifts of beauty God offers us each day.
September 16, 2011When I start receiving emails and phone calls and questions during casual conversations asking how Mary is doing, it’s an indication that it’s time for another update. Usually that means an opportunity to compose another upbeat, cheerful progress report. In a strictly physical sense, that is what this one should be, too.
July 11, 2011That’s how we’re choosing to deal with this, as a bump in the road. Things were sailing along smoothly, Mary’s appointment with Dr. Reickert ending with laughter, and not quite high fives, but close enough as he laid out the game plan for the ostomy reversal. He also tossed in yet another surgery option, that of removing Mary’s medport, which would well and truly mark the victorious end of her battle. First she needed another bout with radiology, as they checked to make sure the sutures from the original resection were holding, to make sure there were no leaks, in other words. She passed that with flying colors, naturally.
June 3, 2011
Jeanine, Dr. Agnone’s PA, phoned and left a message today. Mary’s CT Scan was “Overall a good. One. Everything is stable. There’s nothing new for you to worry about.” Mary called to get clarification, and finally asked, “Is it safe to say I’m cancer-free for the moment?”
Jeanine replied that she was in stable remission.
That’s incredibly good news, tempered only by the fact that when I Googled “Stable remission,” I couldn’t come up with a good definition. I did find one site which listed the terms oncologists use to describe their patients’ status vis-a-vis cancer. Included among them are partial remission, stable disease and complete remission. Of the three, complete remission is the best one. That’s the brass ring of cancer outcomes, the one where there are no signs whatsoever.
Partial remission means tumors have shrunk by 50% or more. Stable disease means the cancers are no longer growing, nor are they shrinking. Maybe she used stable remission because there are a couple nodules on Mary’s liver and lungs. They are small, and the same size as in the last CT Scans.
The doctors doubted they were cancerous then, and we can assume, they doubt they are now. But they are still there, which might be why the term is stable remission.
We’ll know in a couple weeks exactly what Dr. Agnone, and Dr. Reickert, think of the results, and what terms they might wish to use or make up.( They might have a good laugh if I show them this flourish of medical analysis, but I don’t think I’ll give them that chance). It’s nice to head out on our trip without this hanging over our heads, though. Knowing is always better than not knowing, and doubly so when what you know is good.
While researching oncological terminology, I came upon a meditation called “Just Listening: Narrative and Deep Illness,” by Arthur W. Frank. His thoughts on deep illness struck me. That’s what Mary has been under for 15 months, and when one member of the family is, so are the rest. It’s true for me, and also for Matthew and Emily, and even our extended family, and all our friends.
“Deep illness may be critical or chronic, immediately life-threatening or long-term,” Frank writes. “Levels of functional impairment vary: some of the deeply ill are seriously disabled, in pain, and require intense and constant medical treatment. Others are in stable remission, with their illnesses effectively invisible to strangers and even to work associates. What counts is the person's own perception of illness: illness is "deep" when perceived as lasting, as affecting virtually all life choices and decisions, and as altering identity. The essence of deep illness is to be always there for the ill person, and the person believes it always will be there. If illness moves temporarily to the background of awareness, that shift is only provisional.
“For as long as one is deeply ill, there is no end in sight. Deep illness is lived in the certainty that it will be permanent and the fear of this permanence.”
Notice his use of stable remission. We’ll hang onto that diagnosis, we’ll work to uproot the deep illness of cancer. We’ll move forward now, eyes fixed on the horizon, where there is a turnstile, and a sign saying, “Thank you for visiting Cancerland. Don’t come back soon.”
May 31, 2011After predicting it for two days, Mary came down with a sinus infection, which then developed into a head cold. No doubt this was brought on by all the pollen in the air, which the plants have released with a vengeance every time there has been a break in the rain. I remarked to Mary that this was the first time she’s been sick since she got sick, and she agreed.
December 31, 2010
Put a tick mark next to the latest milestone. We finished the year. I wouldn’t have given you good odds on that one back in March, when our world came crashing down. But there you have it. The miracle of life, the power of prayer, and the wonders of modern medicine combined to create the greatest Christmas gift possible.
Having both kids home made it special. Opening their gifts to us made me stop and think how thoughtful their presents were, and to wonder how on earth we managed to convey that message to them. We exchanged gifts, we went to late church, where Mary sang in the choir, and we passed the flame and sang “Silent Night” by candle light, and what a Holy moment that was.
The week before we flew to Arizona where we met Emily and my parents, and watched Matthew graduate from the University. He was proud, and so were we, and relieved, and excited about the new career he is careening toward in New Orleans. Funny how sometimes people grow up suddenly. At times I wonder how much Mary’s illness contributed to his turning the corner so abruptly.
Mary was still feeling the effects of radiation when we flew to Tucson. She was uncomfortable, and often in pain, and I responded at times with impatience. It reminded me of what my job is here, to give her the care and support she so badly needs. Only, of course, as you may have gathered from these reports, demand for those duties were in short supply over the previous nine months. Mary handled the procedures and treatments so well that I grew complacent. Only in the past month has she been sick, and it has been a revelation. As she struggles now I am all the more amazed at how well she has done.
When we returned we had our annual Christmas party, with some 50 or so people passing through the house and staying as late as they wished. It was a wonderful time, and everyone kept remarking how well Mary looked. And she did. She’s lost a bit of weight from the last bout of chemo and radiation, and it reflects nicely on her. You may recall after the first chemo session she complained that she hadn’t lost weight.
Lately Mary is having good days and bad days. Christmas Eve was a good day. Christmas Day was not. She asked if we minded if she didn’t cook Christmas Dinner. No, we didn’t mind. We could have tried it ourselves, but she wanted to do it, and she didn’t feel like eating it that day if we did manage to make it. The next day, she was fine, and we had our Christmas Dinner one day late.
The question we confront now is what is causing this discomfort. It’s hard to know, without further testing, because the region where the radiation was focused, is, naturally the region where the cancer remains. Is Mary’s discomfort simply a side effect, or is it a sign that the radiation didn’t work? That’s a hard question to ask, and, though we hope for the best, I fear the worst sort of answer.
Sometimes it feels as if we’ve been abandoned by the medical profession. We’ve passed from one side, treatment, to the next, surgery. Only the surgeon isn’t ready to see us. That will happen on the 13th. Then what? Is a physical exam enough, or do we need another CT Scan? If the latter, will there be enough time to schedule it before the optimal time for surgery passes? What about blood tests? Shouldn’t someone be checking for CEA or any other markers? Is there something I was supposed to do which I forgot about?
The questions are the hardest part, and the fear that things are no longer going as well as they have been, and as we have said they have been going.
This morning I read an email from our friends Nigel and Sabine, wondering if we were planning to visit England any time soon, or if they should be planning to come over here next year. I wrote back to say we didn’t know what our plans were. We weren’t sure when we would be going to Australia, though probably it would be next fall, and if we would come back via Europe if we did. I said “It's hard to make plans when you don't know what the future holds, or it's easy to make plans when you don't know what the future holds. On the one hand, you can't really commit, on the other, you can commit to everything knowing you possibly won't or can't do anything.”
And that’s pretty much where we stand at this point, on the precipice of a New Year, ready and willing to face the challenges that lie ahead, eager to embrace the victories, unsettled at times by the uncertainties, but grateful for the love and support and prayers of friends near and far.
Happy New Year.
December 7, 2010With the exception of the week immediately following her surgery, the past two weeks have probably been the hardest Mary has faced. This might come as a surprise to those of you who have spent any time with her during that period. The fact that she did everything on her calendar, including cooking Thanksgiving Dinner for seven (with a big assist from Emily and her friends, Shreya and Swetcha), and hosting 40 or so for that Saturday’s Tree Trimming Party, reinforces what I’ve come to understand. Mary is a very strong person.
November 9, 2010Lately I’ve been caught by surprise when people ask about Mary. Wherever I go friends approach, and with that profoundly sincere expression, ask, “How is Mary doing?” I respond, reflexively, “Fine,” while wondering why the special emphasis. Then I catch up with reality and realize, of course, it’s because she has cancer.
October 20, 2010Back when Mary was thriving while pregnant with our first child, I remarked in jest that she was born to be pregnant. She was not amused, my quip smacking of kitchens and unshod feet. The other day I made a similar comment, that she seemed to have been born to have cancer. I didn’t mean it as a joke. It just blurted out when we were talking with friends about how amazing her experience has been.
October 5, 2010
Lately I’ve started feeling like Gary Cooper or Randolph Scott in one of those old Hollywood westerns. The ones where they circle the wagon train and everyone holds their positions, rifle at the ready, waiting for the indigenous peoples to register their displeasure with the illegal immigrants in their midst. Cooper says to Scott, “It’s quiet out there,” and Scott replies, “Yeah–too quiet.”
Mary handled her surgery about as well as she’s handled everything else in the last six months. Aside from that one blip last Tuesday, her recovery was ahead of schedule. Dr. Yoshida dropped in last Thursday, just before Mary was discharged, to tell her she was about the best patient he’d ever seen. Our ride home was punctuated with heavy traffic, and a large number of drivers exhibiting substandard motoring skills. At one point, as we avoided another mishap, Mary murmured, “Wouldn’t that be ironic.”
As I had some post-discharge errands to run, we arranged for Laura, aka “Nine,” to meet us at the house. When I returned I found Mary making her friend some tea. She stood in the kitchen as she went through the 20 or so cards and care packages that had accumulated. Meanwhile I savored my one piece of mail, a “Thank You” card from Janis, the salesclerk at the furniture store where I bought the recliner.
The next morning, Mary got up and made her own breakfast. The next evening, we went on a half-mile walk. Yesterday she stretched it out to a mile, made her own lunch, and dropped in at the Herb Society Board Meeting in the afternoon. It isn’t a case of pushing things, though. She gets tired in the evening, and sleeps in most mornings, and is happy to have things done for her. But the sense I had before surgery, that now the fun times were over, and we were going to learn what it was like to be really sick, that hasn’t happened.
It’s really uncanny. So much so that I’ve started to wonder, can it really be this easy? Can we have gone from a statistical death sentence, and a doctor saying there was no prospect of surgery, “We’ll do chemo and hope it works,” to a situation where we are looking total remission in the eyes and are not even tempted to blink? All in the space of just six short months? It’s quiet. Too quiet.
Of course, there’s still another course of chemo, this time with radiation, and then another major surgery in three or four months, so it’s not like Mary’s ready to start training for a marathon or anything like that. (Though Sunday morning she suggested we might ride our bikes up to Provencal. I demurred, pointing to the risks of falling off the bike). Still, Mary has handled everything they’ve thrown at her, and this includes the diagnosis, with aplomb. It’s been inspirational to be around her, not just for me, but for so many of our friends as well.
September 30, 2010
September 28, 2010
Today was a lousy day to drive to the hospital. A steady rain was falling, the kind that lays on the freeways allowing every truck to create its own impermeable weather system. While driving, alternately accelerating out of trouble then braking to avoid the next spin out, and trying to figure out what it is about inclement weather than makes people think, “This looks like a good day to forget everything I ever knew about operating a motor vehicle,” I wondered what the day would bring. How would Mary feel today? Would her spirits be better? Is she more comfortable with the idea of going home? Has that gaseous, bloated feeling begun to ease?
When I got there she was hooked back up to an IV, and a nurse was telling her the tests were scheduled for 1:00. It turns out she had a bad night, very little sleep, bad nausea. She’s back on a liquid diet while they determine whether there are intestinal problems. In short, she won’t be coming home today. She is still getting stronger, though, and her hallway walks are getting faster and faster. So this is just a setback, an understandable complication, but nothing that should inhibit a proper recovery.
When Emily showed up around 1:30, as they were wheeling Mary to the X-Ray department, I headed out into the deluge to buy a reclining lift chair. What an exciting lifestyle breakthrough! Unfortunately, they informed me that I couldn’t get it in naugahyde, as naugas are now listed as an endangered species. I decided to forego the beverage holder option. No doubt when Mary is fully recovered and I rescind my NFL boycott, that decision will come back to haunt me.
September 28, 2010
Mary and I were strolling down the hallway outside her room Sunday afternoon, she with her hand resting on my crooked arm, for security rather than support. We moved at a gentle, almost serene pace, like some mutant Seurat painting of perambulating Parisians, the other patrons dressed in matching blue or white scrubs, and the duck pond replaced with darkened rooms inhabited by people slowly coming back to life, or trying to retain their hold on it. If that scene weren’t bizarre enough, I was reminded of some of the lyrics from Tom Waits’ song, “Walking Spanish Down the Hall.”
Walking Spanish is slang for the act of escorting someone by the nape of his neck and the seat of his pants, synonymous with giving one the bum’s rush. Which I guess is what this massive, invasive surgery was all about, an unceremonious eviction of the interloping cancer. In the days to come we shall see how effective that strategy has been.
When Dr. Yoshida came in to see Mary Saturday, the day after surgery, he cried “You look fantastic!” A glance at the surprise in his eyes upon seeing her proved that his enthusiasm wasn’t just for show. She looked surprisingly well, and her physical condition was also beyond expectation. We all thought it was good news when he said she would probably go home Tuesday, “if not Monday.”
The nurses’ goal for her that first day was to get her out of bed twice, and to sit in a chair for an hour or two. Her first walk down the hall was her idea, and the staff was highly supportive in their approval. Sunday, Mary was up almost as often as she was down. Her spirits were good, and she ate a larger portion of her meals, and things were definitely looking up when I left.
Then came yesterday. Not a good day as these things go. Physically Mary is continuing to improve. In fact, by the time Emily and I got there almost all the various iv’s, catheters and other mysterious tubes had been removed from her body. She had already been up and walking unassisted three times, and the night before had repeatedly gotten out of bed without any help. Yet Mary felt miserable, and there was nothing anyone could do to make her feel better.
It wasn’t really pain, more a general discomfort, and a horrible bloated, gassy feeling. I told it that was natural, since her insides had undergone such terrible trauma just two days before. She was, however, basically unconsolable, and began talking about having to stay in the hospital until Friday, if not through the following weekend.
I think mainly what she was feeling was depression, which, given the seriousness of the surgery, and the range of drugs coursing through her blood–not to mention they took away her morphine button– seems like a natural outcome. Of course Mary, not being subject to depression, has a little trouble recognizing it. If it were me, I’d know who depression was while he was walking up the sidewalk. I’d meet him at the door, usher him in. “Grab a chair, sit down, take a load off.” Mary doesn’t have that luxury, and was not at all pleased when they told her last night she’ll probably be going home today.
I’m heading down to the hospital now, and hope she’s feeling better. I wonder if hospitals should focus exclusively on physical recuperation in this sort of situation? Surely the emotional component is almost as important in achieving a satisfactory recovery. Even if Mary were physically able to do cartwheels down the hall, would she be ready for release if she thought her body was about to explode? Well, we shall see what her condition is today, and whether any one has changed their mind.
September 24, 2010
A couple of updates back I mentioned how our friend Paul threw a curveball into our plans, suggesting an alternative approach to surgery. His idea was to focus first on the liver cancer, since that was the cancer that could kill. After a flurry of discussions, and second guessing, and rethinking, we, and our surgeons, with Paul’s concurrence, decided to stick with our original plan.
Imagine our surprise then, when Dr. Reickert came out of surgery around 10:00 this morning to tell us plans had changed. Naturally, our initial reaction was less than positive, as the one thing we knew was the surgery was supposed to go five or six hours. Anything less, definitely, something less than two hours in, was bad news.
Not so, the surgeon assured us. During the laparoscopic probe they discovered a couple of things. One, the cancer had not spread through the pelvic region, which was good news. Two, there was no sign of cancer in the left lobe of the liver. The right one, though, had three tumors. After detailed discussion, the surgeons agreed that, instead of doing the Low Anterior Resection and removing the left lobe of the liver with RFA on the tumors on the right, Dr. Yoshida would remove the right lobe. This is a much more complex surgery than removing the left, and because of the stress on the body, it mitigated against doing the rectal surgery.
In other words, once they saw what they were dealing with, they decided to go with the curveball. After Mary recovers from this surgery, she will undergo two or three more months of chemo, along with radiation. Then, maybe four months from now, she will undergo further surgery, to remove the rectal tumor. This has a couple advantages. One, she won’t have to deal with an ileostomy or colostomy while recovering from this major surgery. Two, one of the risks involved in doing chemo after the resection was the inhibiting effect it would have on the healing of the tissues. This increases the chances of success for that surgery. (Plus, as an added bonus, Dr. Reickert determined it was possible to attach the colon to the sphincter, which means Mary could have a temporary ileostomy, and not be saddled with a permanent colostomy).
But that is further down the road. First comes recovery. This was major, major surgery, and it took more than six hours to complete. By the time Mary left the recovery room and was installed in her own room, we had been at the hospital for more than 13 hours. By the time we got in to see her, all she wanted to do was sleep. Which is how we left her. We’ll go back tomorrow, planning to spend the day.
At this point, I’m not sure whether non-family visitors are even allowed, though certainly she isn’t up to receiving them anyway. I’ll let you know if this changes after the weekend. We don’t know when she will be coming home, as it is, of course, very early in the recovery process. The important thing to know is Mary survived the surgery. She came out of it in very good shape. She was coherent, and miserable, and ready to move on to the next stage.
Thursday night we had visitors, Bruce and Nancy from Toronto, and Denis and Janey from Boston. That was a total of three cancer survivors, which was not a bad sendoff for surgery. The ride to the hospital, at 5:00 this morning, was as tense as you might imagine. But we were armed with the support of friends, and the preop process was filled with laughter and love.
Emily was there, with her friend, Laura. Kate came in later, with a dozen bagels, and Cindy dropped by in the afternoon. From our contemporaries, Margaret, Izzy and Laura, aka “Nine” were there. They kept things light, and fun, and we all supported each other during the seemingly interminable wait. Best news of all? The waiting room was divided between a room with televisions, and a designated quiet area. The quiet area was anything but, filled with laughter, conversation and groups huddled together to share their affections.
Our world did change today, in a manner different than we expected. We have a new game plan, one which I am confident Mary will execute as successfully as the last ones. We’re moving ahead with renewed hope, and the comfort and confidence inspired by the love and support of friends too numerous to count.
September 23, 2010
Our yard was infested with Gill Over the Ground, a highly invasive ground cover which spreads via runners. Also known as Creeping Charlie, if left untended, it can completely overwhelm a lawn. While small concentrations can be controlled through hand weeding, we were advised that herbicides were our best option.
A couple weeks ago I took it upon myself to eradicate the pest by hand. Mary suggested it was therapeutic, and I think she was right. The other day I was sprawled on the lawn, pulling strands of grass apart as I uprooted runners as long as two-feet in length. In the process I pulled up some grass, and left huge bare patches in the lawn, where the weed had completely taken over. By the time I finished, the lawn looked far worse than when I had started, which meant I had to put down new topsoil and grass seed, and hope it takes root before winter comes.
This, I realized, is a lot like fighting cancer. Our surgeons and oncologists are trying to uproot this highly invasive species, and in the process they’re uprooting good tissue as well. Cancer treatment has come a long, long ways, but in its essence it is still a race to destroy the cancer before you destroy the body. Once removed, we can plant new seeds and work to recreate the healthy landscape which existed before the invasion.
I know I was successful in stopping Creeping Charlie’s advance. I also know I will have to remain vigilant next spring and in the coming years to inspect the lawn, and to act at the first sign of its return. In the same way, with Mary, if the uprooting is successful, she will undergo frequent tests in the future to make sure it doesn’t return.
Things have proceeded swimmingly for the past six months. Mary’s health has been surprisingly good. She has tolerated her treatments, and we just finished what was, in so many ways, one of the best summers of our lives. But now the serious uprooting begins. Henry Ford Hospital just called, to inform us we need to arrive at 5:30 tomorrow morning. Surgery is scheduled to begin at 7:00. If all goes well it will go on for several hours.
We are no longer playing at make believe. In less than 24 hours the landscape of our lives will be completely disrupted, and the task of healing will begin in earnest. The last two weeks of not knowing have been hard, harder it seems, on me than on Mary. Maybe because she has a deeper well of inner strength, or a more placid outlook on life and its possibilities.
The way she spent her day is a compelling example of the equanimity with which she faces her challenge. She had a hair appointment today, because, of course, everyone wants to look good for their surgeons. Then she decided it would be fun to invite some friends to come along for manicures, pedicures and facials.
What better way to get ready for surgery than a Spa Party?
Emily flew in on the Red Eye from Sacramento yesterday, and will drive back west one day next week to begin her classes a couple weeks late. Matthew, though willing to come, is racing against time in a bid to complete his undergrad studies by January. We told him to stay in Arizona. Thanksgiving break will be here soon enough. Better to reflect Dr. Yoshida’s philosophy, that this is no big deal. A few hours under the knife, and then we’re back on our way. After all, it’s not like it’s rocket surgery or anything, just a simple procedure involving a rectum, a liver, and two surgeons.
With 10 days to go until surgery, it’s time for some housekeeping. Our friend Mary Beth has set up a page called “lend mary a hand,” at a website called “Lotsa Helping Hands.” One of the main features of this site is a calendar, on which we can list things we might need, be it a meal, a ride, or just company. Not knowing how Mary will respond to surgery, we don’t know how extensive her needs will be, but the site provides a resource both for us and for our friends who want to help. It eliminates the problem of too much help when it isn’t needed, and not enough when it is.
As I understand it, you need to join the community if you want to offer yourself as a resource. Granted, this doesn’t really apply to those of you who aren’t local, but I thought it was easier to just include this information in an update. To join the community, click on the following link, https://www.lotsahelpinghands.com/c/630677/. Please let me know if you’re having trouble getting to the website.
One the community is populated, we will be able to post a need to the calendar, and you will be notified. Once someone responds, that need is no longer outstanding. This is all new to me, so we will have to see how it goes, but Mary Beth said one of her sisters used it when she had cancer, and it was a life saver.
I was just humming the words to that old Beatles song, to which the title of this piece allude, and I started to laugh. “When I’m Sixty-Four?” It doesn’t seem that long ago that sixty-four seemed a long ways away. Not so much anymore. Of course getting there is what this is all about now.
We’re ten days away from surgery. I don’t know how Mary’s doing, but I’m a wreck. I mentioned to a friend I was having trouble sleeping, being frequently awakened by vivid dreams detailing various obstacles to my getting Mary to the hospital for surgery. He noted that was no doubt a reflection of my feeling helpless. There is some truth to that. I can help support her, do what I can to encourage her, and after surgery, do whatever it takes to help her recover, but at the end of the day this is a matter for Mary first of all, and then the abilities of her surgeons. If something goes wrong with either of those factors, I can have the best attitude in the world, and the most selfless intentions, and they will mean nothing.
So we move forward. The reason I don’t know how Mary is doing is she has spent the last few days in Oklahoma, with her friend Cordelia, the loss of whose husband I mentioned in the last update. Peter fought cancer for twenty years, which is pretty amazing. Cordelia told me, “We had twenty years to plan Peter’s funeral, and we never said one word about it.” Mary just called, waiting for her return flight, and said the visit was good. It was important for her to be there. Important for Cordelia, and also for herself, I’m sure. One good way to keep from hearing the footsteps is to keep moving.
After surgery Mary will be in the hospital for 4 - 7 days. When she comes home we will be in an unfamiliar country. Neither of us has any experience with invasive surgery, so we really don’t know what the recovery process will entail. One thing we do know, though, is for the first time since our adventure began, Mary will definitely be sick. That’s where my work will begin. It’s easy to be a supportive cancer spouse when the full extent of your duties are to coordinate her visitors and her travels. Now, though, things will be different.
This is where our friends come in, because, folks keep telling me, this is where I’ll need help. Curiously, my initial reaction to talk of coordinating schedules for food, and care, and company, was one of resistance. I’m not one of those husbands who is helpless in the kitchen, the type of guy who might starve if his wife wasn’t there to cook for him. I wasn’t sure how much help we were going to need, and I definitely didn’t like the idea of being shunted off to the side. But gradually others have convinced me of the importance of taking a day or two a week off, and to rely on others to prepare dinner and offer company, as needed.
(You may find it interesting that Mary has been one of the strongest advocates of my taking time out for myself. Rather than an indication of concern for my well being, I suspect this has more to do with her dread of being restricted to her bed, unable to escape my jokes, my humorous, fact-based anecdotes, my creative reminiscences, or my cogent, insightful analyses of world affairs and domestic politics).
Mary’s surgery has been postponed until September 24. This is mainly due to her acknowledging her Scottish roots and seeking to save time and money by having both surgeries at once. Actually, that was the plan all along, but it turns out the 24th is the first day both surgeons are free. At first Dr. Agnone, Mary’s oncologist, was not thrilled with the delay. It was too long to be optimal. Ideally the surgery would take place on the 3rd, or sometime the following week. In the end, though, he didn’t see it as a major cause for concern.
The delay actually gave us some time to do some serious rethinking of the whole affair. An oncologist friend called with some alternative ideas, which led to the unusual experience of sitting by the side of the road somewhere near Au Gres (on our way to East Tawas), and talking on speaker phone with him. The reception kept going in and out, so we stopped in a live zone.
Paul’s idea, which represents some of the cutting edge thinking coming out of Houston’s D. M. Anderson, is to focus on the liver first. This is the complete opposite of everything we’ve been hearing, which is to get rid of the primary cancer before it can spread further. This alternative targets the liver, because that’s the cancer that can kill, while holding the rectal tumor at bay with radiation. In a nutshell, if you can’t control the liver, why put the patient through the inconvenience and possibly ignominy of a colostomy?
It gave us something to think about, and some time in which to do it. The main thing we realized, is that this new approach, with its Plan B quality, and its palliative nature, implies a sense of giving in to cancer. In Mary’s eyes, and in mine, giving in sounds a lot like giving up. It’s the same with her preferring the inconvenience and potential complications of an iliostomy over a the relative simplicity of a colostomy. Anything less than going after a cure is surrender.
We have friends who have faced multiple bouts with cancer, and are still here to talk about it, and to encourage us. It is a great resource for Mary to talk with people who are authorities by virtue of their still walking the planet.
Sadly, we also saw cancer claim new victims. A friend lost her son, too soon, too much younger than we are. Then shortly after, Peter, husband to one of Mary’s oldest friends from Tucson, fell, after a long, furious, heroic battle which he should have and could have lost years ago. Now Mary’s trying to work out a time to go visit her. And that’s one good outcome of the delay.
Another was that Mary got to go out to Tucson last week, to finish dealing with her mother’s affairs. While she was gone, I rode my bike down from East Tawas to Grosse Pointe. I spent a lot of time on the bike questioning my motives, wondering if this trip was simply a matter of running away. Was it in some sense a betrayal? I had to answer in the negative. It’s what I’ve done every year for a decade now, and I already shifted the timing several times to accommodate Mary’s scheduling needs. Plus I needed it for my mental health. And finally, Mary didn’t mind.
August 19, 2010
What a frustrating day of doctors and decisions. This morning we saw Dr. Yoshida, who told us, basically, that he wouldn’t know what he was going to do until he knew what Dr. Reickert was going to do. Dr. Reickert, on the other hand, wasn’t sure what he wanted to do, and though he was pretty confident that he would do something, he left a huge decision in Mary’s lap. Which, of course, is where the decision has to be left. After all, she’s the one who has to live (at least, that’s the plan), with her decision.
Not only do we have to choose between an iliostomy and a colostomy, or between a low anterior recision with possible ostomy and a transanal excision, we also had to decide on the date. Would it be September 3 or September 24? There were arguments in favor of both dates, in terms of timing, travel, training and obligations, but ultimately we decided on September 3. Guess who won’t be golfing this Labor Day weekend.
Dr. Yoshida explained to us that the more complicated the colorectal surgery, the less likely he would be to do major liver surgery. The way things look right now, we’re leaning toward the most radical surgery, as that offers the best chance for a cure. If you don’t cut out the primary cancer, you’ll never do more than tread water with the secondary tumors. Mary has, from the beginning, vowed to beat this thing, “to kill this thing.” Which means she’ll probably undergo Radio Frequency Ablation on both lobes of her liver.
It really is astounding to sit with surgeons and discuss possibilities and options, all wrapped up inside a five-to-eight- hour surgical marathon--unless the surgeons find things are worse than they expected, at which point they’ll just sew her back up and we’ll move on to Plan B–so blithely tossing out possibilities and scenarios as if they didn’t all have mortality as the underlying narrative.
So we’re set, as of right now, for surgery on September 3. Here’s the best case scenario: Surgery followed by 4 - 6 weeks of recovery, followed by 4 - 6 weeks of chemotherapy and radiation, followed by 4 - 6 months of chemo, followed by 6 - 8 weeks of recovery, followed, if we’re lucky, by another surgery.
The good news? We might have to put that Australia trip off til next fall.
It’s been a whirlwind month since I last sent an update, filled with visits and boat rides and plane rides and more visits with old friends and new, here, Up North, in Vermont. And it isn’t over yet. Tomorrow we’re off to East Tawas for a day, to spend with one of Mary’s college roommates, who married a guy from Bay City. Mary drives home Saturday, while I will be riding my bike along the Lake Huron coastline back to Grosse Pointe. I’ll get back on Tuesday, just missing Mary, who will be flying to Tucson about two hours before I get home.
The social schedule has been exhausting, at least for me, the ostensibly healthy one. Mary has taken it, as she’s taken just about everything else in this affair, in stride. Basically we’ve packed a lifetime of travel and friends into two short months, just in case.
July 20, 2010
Yesterday Mary started her eighth chemotherapy cycle. We don’t know if it is her last. Originally she was slated to go six or eight cycles, but since she’s tolerated it so amazingly well, and had such positive results, the doctors may decide to have her go a bit longer. She told me she wouldn’t mind, since that would increase the likelihood that surgery would be delayed past the middle of September. She’d prefer that because all her various Garden Clubs have important meetings in the first two weeks of the month. When I suggested she might have her priorities a bit off, she just gave me one of those looks.
One of the other patients was having a small party at the chemo lab. It was her last session, and she had several friends and family members who came bearing balloons and a life-sized cardboard cutout of Elvis Presley. Naturally, we were all happy for her. She has maintained an impressively spunky, upbeat attitude, and wears her baseball cap jauntily. I was glad that Jeanelle wasn’t there, though. She is a tall, graceful woman with fine white hair, who has carried herself with a quiet dignity. She has also steadily declined physically, so much so that the last time I saw her I thought we wouldn’t be seeing her much longer. These two women define the spectrum of cancer, its effects and treatments.
It is truly a life or death struggle. We’re pleased that Mary seems likely to land on the life end of the spectrum, but mortality remains an ever-present specter. In fact, it reared its ugly head in a most personal manner yesterday morning, when Matthew called from Tucson, where he had been awakened at 5:30 by a phone call from the Forum, Mary’s mother’s assisted living center. Many of you have already heard, and the rest of you are no doubt guessing the news correctly. Matthew had the unpleasant task of informing us that Mary’s mother had passed away during the night. It was, he texted me later, “a crappy day.”
She lived a good life for most of her 89 years, though much of the joy went away with her husband nearly seven years ago. She was loving and kind, and amassed a fortune in friendships. In the last few years attrition whittled away that lifetime’s collection, so that there were not too many phone calls to be made to her contemporaries. One of her goals, her final one, was to die in her sleep, and so her life ended the way she lived it, on her terms. Now she is reunited with Val.
Mary is handling it well, having already twice said good bye to her. She regrets not calling her Sunday night when she had the urge to, reasoning it was 7:30 in Tucson, and her mother was probably going to sleep. A missed call, never to be made now. That’s something to keep in mind.
We will be flying to Tucson after chemo tomorrow, and having a small funeral service Saturday morning before returning Sunday evening. Next week starts our triumphant tour of doctor s’ offices, with hosannas and high fives all around, while we start to work out our strategies for the next phase.
July 14, 2010
Back in the early days, which seem at once so long ago and so recent, when I was still weepy and sobbing, and snuffling things to Mary like, “If you’re strong enough, you can help me get through this,” she made an observation which I found perplexing at the time. “I wonder why I can’t cry,” she mused.
Maybe, just maybe, the reason she couldn’t cry was there was nothing for her to cry about.
Yesterday Mary had her CT Scan. Afterwards we had lunch at a place called Dockside Jack’s, a ramshackle restaurant plunked down in the midst of a vast marina. It was overcast, and refreshingly cool, so we sat outside, beside the glass-smooth water. All around us overgrown boats occupied their slips, and warehouses, cranes and gas docks littered the horizon. It was peaceful, simultaneously maritime and industrial. We had the place to ourselves, in contrast to the mighty pulsing nautical nightlife the establishment seemed designed to accommodate. I was trying to figure out the best way to find out what the test had revealed, though Mary seemed inclined to wait for our doctors’ appointments in two weeks’ time. This patient acquiescence in whatever the future holds is something that constantly amazes me.
That evening, however, she received a call from Dr. Agnone, who had no compunction about waiting around to give her the news. Short of “There is no cancer,” his news was about as good as it was possible to hear. The short version is that the chemo is working. The tumors in her liver have shrunk. As for the primary cancer, the report reads, “The rectal mass is no longer identified,” which means that ugly tumor, the one of which Dr. Barbe said, while flourishing the photo in my face four months ago, while Mary was coming up from the colonoscopy anesthesia, “It is cancer. I have no doubt. Even if the biopsy comes back negative, I can tell you, it’s cancer,” is not visible to the naked eye.
What this means is Mary will probably have surgery in a month or two. One of the worst things about cancer is that the prospect of undergoing a six-to-eight hour operation is unalloyed good news. What this means is perhaps we have turned a corner. It is as Churchill said about another great battle, “Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”
In other words, we aren’t out of the woods just yet, but shafts of sunlight are beginning to slice through gaps in the canopy. Since a CT Scan doesn’t work on a microscopic level, the absence of visual evidence doesn’t mean the cancer is gone. In all likelihood it isn’t. But if it is no longer visible, it increases the chances that Mary can have surgery with no permanent damage. As for the liver tumors, we still don’t know what that involves, but since Dr. Yoshida was reasonably optimistic about the prospects of success from a combination of surgery and radio frequency ablation when they were larger and still growing, the fact that they have been reduced makes those prospects all the more appealing.
We have gone into this battle with the love and support of friends and families, and with ranks of self-described “Prayer Warriors” leading the charge. Thus far the forces for truth, justice and the American Way are routing the forces arrayed against us. We are reinforced by justifiable optimism as we approach the next phase.
Mary, being Mary, upon hearing the news from Dr. Agnone, said, “No, congratulations to you.” As for me, I’m seriously searching for a sedative to help me endure a 20-hour flight to Australia next spring.
July 7, 2010
So it was Tuesday, after the long holiday weekend, that Rachel took Mary to chemo. I had a conflict. A small one, taking Matthew to the airport, but a conflict just the same. And Rachel got to help. She got to lend a hand, and Mary was the beneficiary of another’s kindness.
I’ll keep trying to take this lesson to heart as we continue on our journey. As for the journey itself, we sort of stubbed our toe today, when Mary got her latest CEA count. It had gone up slightly, from last month, though it’s still down from the first one. Dr. Agnone says the numbers aren’t entirely reliable, that he could take five different samples from the same person, and probably get five different counts. We’ll go with that one. It makes sense and it sounds good.
However, next Tuesday, the 13th, Mary will take another test, a CT Scan, and it will be very important for her to pass that one. Unfortunately, there’s no way to study for these kinds of tests, and there are no shortcuts.
June 4, 2010
Yesterday we consulted with Dr. Agnone. He is pleased that Mary’s blood counts have held up so well after four courses of chemotherapy. The side effects continue to be mild, and he explained the difference between the neuropathy Mary thought she had and the sensitivity to cold which was actually bothering her. They are two completely different things, and the sensitivity should go away when she completes chemotherapy. Also, we agreed that the reason she felt so slammed by the last cycle might have more to do with the fact that she kept busy even during the chemo days, visiting nurseries and helping to plant gardens at the War Memorial. We agreed she needs to give chemo the respect it requires, for as long as the cycles continues.
Then again, she may not be finished with chemo as quickly as we had expected. The doctor suggested we might want to stick with it longer than the original plan, especially if it appears to be working. As long as she can handle it, she should keep going.
When we left, I said it was great to get good news. Mary wondered what that was, so I said being able to take chemo longer than planned. “That’s the good news?” she responded. Actually, it is. It may make her feel lousy, but it isn’t making her sick, and it’s not wearing her down as much as it could be. The longer we can do it, the more likely it is to beat down the tumors, and the better chance she has to have surgery, and to have a good outcome from it.
Mary stopped by the lab to have some blood drawn, so we could get a CEA reading. CEA, or carcinoembryonic antigens, are molecules occurring in the blood which serve as markers for cancer, especially colorectal cancer. Normal CEA levels are around 2.5 for nonsmokers, or 5.0 for smokers. Although testing for CEA hasn’t proved to be a reliable method of cancer screening, it can give some indication of the effectiveness of a particular course of treatment.
When Mary started chemo, her CEA was 238. After her appointment today, we walked down to The Hill to meet Dick and Susan, friends who had invited us out for lunch. When we returned home there was a message from Jeanine at Dr. Agnone’s office, calling to say she had “Good news” about Mary’s lab tests. Naturally, Mary decided to forestall her nap long enough to make the call. The news? Her CEA count is down to 186, a 22% reduction.
So that’s the good news. It doesn’t mean she’s out of the woods yet, but it is definitely pointing in the right direction. It makes us more inclined to use “The Other C-Word.” It makes our plans to visit Charlie and Kelly in Australia next spring, or to move up north and open a winery, or even, come on, to finish reroofing the house, less of an act of denial, a show of the sort of bravado shown by the man who refuses a blindfold when facing a firing squad, and more of the kind of practical long range planning in which normal couples engage. (A word of advice to others who share my abhorrence of flying, who might find themselves in my situation: consider waiting for that first CEA test before committing to a 20-plus hour long flight across the South Pacific).
The bottom line is, the chemo appears to be working, and Mary is tolerating it remarkably well. We find ourselves surrounded by loving friends, and we continue to make plans, for next week, next month, and next year.
I hope, once we lick this thing, that we will always remember the value of friends, and the importance of reaching out, constantly reaffirming and refreshing them. It’s so easy in our day to day lives to give in to the convenient friend, the acquaintance in place, and to neglect the possibly more valuable friendship which, owing to geography or conflicting schedules, is harder to connect with. But there is nothing more valuable in life than spending time with the ones you love. Maybe that’s why we have to go through this, so we can learn that lesson all over again.
March 13, 2010
I'm sitting here smugly superior to the other people staring blankly at the obnoxiously omnipresent television, killing time in the waiting room while my wife undergoes a routine colonoscopy. Turns out my buddy Dan is the anesthesiologist. He comes out and says “I just knocked her out,” and we laugh and exchange small talk. I ask him when he’s moving in because he just bought a house around the corner. “Next week,” he says. “No loud parties,” I say. “I will call the cops. And tell your kids to stay off my land.” He laughs and says “I already told them, ‘Remember the guy in Gran Torino?’”
He leaves, laughing. I leave in search of the cafeteria where I drink tepid coffee and eat a stale bran muffin. Then I go back to the waiting room and discover the world has shifted on its axis.
They call my name. I go in. The doctor is there with color photos of all those places we’re not meant to go. “It’s cancer,” he says. I go back to the waiting room and read the same paragraph 20 times and find it interesting how the magazine flutters in my hands. Dan comes out, claps me on the shoulder and tells me, “Anything you need, any time, call me.”
She wakes up. I go in with the doctor. He barges straight in. I want to go first, hold her hand, but he’s in the way. I hold her foot instead. He says it’s cancer. She says, “Okay.”
I think, “Whoa, where did that come from? It wasn’t routine and why am I the last to know?’
At home she asks me to research rectal cancer online. I do some work and discover rectal cancer is about the best kind of cancer to get, if you’re going to get cancer. Very good survivability rates, depending on which stage you have. We agree she is probably 1, maybe 2, 3 at the worst.
Next comes a battery of tests, and our life is already in transition. Monday Cat Scans. Wednesday pelvic sonogram. Before the latter, a visit to her primary care physician. She thinks it’s to talk about the cancer. He thinks it’s a physical. No time for that, we need to get to the hospital for more tests. He brings up the Cat scan results and says no charge for this visit. “Here, I’ll give you copies.”
At the hospital we read them. It catches my eye, “Findings in keeping with rectal cancer and hepatic metastases.” I’m not a doctor, nor do I play one on TV, but I don’t like the sound of this.
She goes in for the procedure. I text a doctor friend. “Is this as bad as it sounds?” He texts right back, “Call me if you can.”
The procedure over, I go in. The doctor comes. More bad news. Now things have started speeding up. We go home. I make her some soup. We sit in front of the computer again and look at our new, revised prospects. She keeps saying, “Well, it’s Stage 3 then, not as good as 2 or 1, but we knew it might happen.”
I know that’s not right, but I don’t argue. That’s not an argument I want to win. She keeps looking, then she says, “Oh, it’s Stage 4.”
We go back to the survival odds page, as if maybe, who knows, they refreshed it while we were gone, new results from outlying precincts or something.
But no, it’s the same as before: Stage 4 – 6%.