July 18, 2017
As a general rule, doctors don’t call you on their own time with good news. So when Dr. Brown began his call with I don’t have all the details because I’m driving to the airport, I figured he wasn’t going to say “The results came back, there’s nothing to worry about.”
It started as a red rash on my left temple and rapidly changed to a scaly surface. Naturally I was concerned, so I made an appointment with a dermatologist. All it took was a glance for him to say, “That’s nothing. My nurse will spray it. But that,” he added, pointing at the giant freckle on my right temple which has been there since the beginning of recorded history, or thereabouts, “I’d like to take a look at that.”
He said it’s probably nothing. Cue sinister music. I think that’s what the Skipper said when Thurston Howell asked about those dark clouds on the horizon.
Anyway, back to the phone call. “You’ve got melanoma,” he told me. He also said it was very early stage melanoma, so it wasn’t that big of a deal, but I would need to get checked every six months, after the surgical excision, and could not go out in the sun without a wide-brimmed hat and sunblock. So much for my new career as unpaid field hand. Actually, when I told Matthew the news his reaction was “You’ll do anything to get out of working in the vineyard, won’t you.”
Emily was a little more sympathetic, as befits someone who doesn’t need dark clouds on the horizon to turn The Minnow around. She knows, even on a sunny day, there are dark clouds looming just over the horizon. Renee had a pretty good attitude, deciding that going hat shopping with me would be a good way to pass the time.
Even though it is minor, no big deal, nothing to worry about with a 98% survival rate, just the fact that it’s cancer threw me for a loop. Throughout that first day, every few minutes or so, whenever in repose, the word “cancer” would pop into my brain. Now, as you know, I’m no stranger to the cancer game. I know a whole lot about its treatment and its cure. I’ve read volumes and researched for hours. In other words, this isn’t my first rodeo.
Still, I can tell you, it’s hard not to feel like damaged goods. Even for something as inconsequential as a little bit of slicing and dicing and sewing back together without even a scar (unless I can convince the plastic surgeon to give me at least a little one), it brings back the shock of Mary’s diagnosis, the battle she fought and the horror of the end when cancer, realizing it had won, did a victory dance on her grave.
I’m scheduled for surgery on August 14. It’s outpatient and that should be the end of the treatment. No chemo, no radiation, no meds. Just a follow up dermatologist appointment every six months. Still, the world has shifted, if only slightly. My outlook is different. I’m the same person I was before, only not quite. Maybe I’m making a mountain out of a molehill, but as a rule, if you find your molehill has changed in shape or size, it’s best to get it checked out right away.
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October 6, 2016
With many a winding turn, that leads us to who knows where. It’s been three months now, and this is what I’m reduced to, quoting the lyrics of sappy sixties-era pop ballads.
It has been a whirlwind of activity, life best spent in a haze of busyness. I bought a house, cut down trees, built a fence, went to California, harvested grapes and went to funerals. Three funerals in four weeks; one, Larry’s, two weeks after Mary’s, in the same church with most of the same people in attendance. Then Bruce, his long fight against cancer undermined by an infection. Cancer is a vindictive bug. Five times it came at Bruce, and five times it failed, but like the intrepid spider in Robert the Bruce’s hovel, it would not give up.
I thought, at Larry’s funeral, that I wasn’t really there, but rather reliving Mary’s. I thought then it had cost me two weeks of recovery. But I was wrong. This isn’t the kind of thing you can recover from on a schedule. You don’t heal, as from a wound, or an injury. You don’t start to get better once treatment begins. Rather than scar tissue forming, the more apt analogy is the phantom pain the amputee suffers in that foot or leg or arm, or in this case the heart, that has been surgically removed.
The unexpected thing as that with the passage of time it grows harder, not easier. I suppose in part it’s because the burst of energy dissipates in time. The, one doesn’t want to call it excitement, but in a way it is, especially when you’re heading down a path you’ve never walked before. Everything is new, and you can spend your time learning a new language, solving puzzles you never knew existed, spending seemingly hours on the phone reciting strings of numbers, her birthday, the date of her death, “the last four of her social,” (which is, incidentally, a phrase the repetition of which ought to be a felony), your phone number, your date of birth, etc., etc, etc.
In time, funeral arrangements finalized, guest housing secured, ceremony done, wake concluded, hugs exchanged, the last friend or sibling or offspring departed, and you settle down to an empty house.
Keep busy, they say. Good advice, that, as far as it goes. You can stay busy, and active, and it is good, but in the end all you’re trying to do is outrun the grief, and sooner or later, you have to pause to catch your breath, and it is there. Grief, you learn eventually, is a lot like cancer. It can afford to be patient because it knows in time you will let down your guard and then it will strike.
Never turn down an invitation, they say. Maybe, though I have turned down some. Sometimes you need to be alone. You can be alone, I’ve always known, and not be lonely, but I’ve come to understand that you can be lonely when surrounded by friends. Sometimes, I wonder, is this becoming a habit? Here’s something odd I’ve discovered. My entire life I’ve been perfectly comfortable dining out alone. I haven’t felt strange, or lonely or anything other than content to sit at a table by myself, with maybe a book or magazine to amuse me between courses. Since Mary died I’ve done it only rarely. It just doesn’t feel right.
Yes, I’ve turned down invitations to join others. Not always, but often. There remains a cautionary voice, warning me that if I don’t say yes some time, in time they will stop asking.
I’ve declined offers of food. I don’t need someone to cook for me. In fact, preparing food has been a form of spiritual sustenance. I’ve developed the habit of walking the aisles of a grocery store, waiting for things to jump off the shelf, and deciding how to put them together. Sort of my own private Cooking Channel reality show.
I spoke with a recent widow who told me one of the hardest parts is the words of condolence. I get it. After three months it’s still so fresh, those you see who haven’t said it feel obligated to say they’re sorry. Of course they do, it would be unnatural not to. But how are we, the grieving, supposed to respond? The reflexive response, the one best choked back and suppressed, is “What? Did you think I’d forgotten?” Unnecessary, of course. That’s not what they meant, that’s not what they meant at all.
So why does it keep getting harder? Because, I suppose, all those things that once reminded you of her still do, not with diminishing impact, but with a sort of cumulative weight. “No, she’s not here,” they seem to say. “She’s not here, and she never will be.”
With the exception of one book review, and the occasional Facebook post, I hadn’t written a single word since Mary died. I was mystified by that development. Would I ever write again, I wondered? Would it be so bad if I didn’t? Then, a couple of weeks ago, I started thinking “That would make a good story,” or “Here’s a nice turn of phrase.” So maybe I’m starting to come out of it. I do know I woke up today and felt the need to file an update to the Cancer Blog.
Maybe that’s a good thing, or maybe you’re thinking, “Oh no. He’s back.”
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July 1, 2016
Someone said, “It’s nice the weather cooperated,” as we awoke to a gray, rainy day. The house has been filled with friends, family and well-wishers these past few days, in a sort of rolling pre-wake celebration of Mary and her life and the impact she had on all of us. A convocation of laughter and tears, of fondest reminiscences and those sights which will, for years to come constitute for some our bitterest memories.
Yes, she is gone. At 12:21 she breathed her last. She held on all day yesterday, refusing to even take morphine, waiting for Matthew and Emily to reach home.
We were together at the end, the four of us. Emily, Matthew and me holding Mary and holding each other, and I never really realized until today what a family truly is. They have been like rocks in this time of their loss, so much stronger than I have been. In part, I realize, this is because they have lived the bulk of their adult lives with her death sentence looming over their heads. They have said their goodbyes intellectually and spiritually, the final departure lacking only the physical, spoken farewell.
Emily asked only one thing of her mother as we approached the end days, and that was for her not to die on her birthday. For the past week Mary frequently asked what day it was, because she wished to comply with her wishes. And so she did, lasting two days past Emily’s 32nd birthday.
Several of her friends have visited, or written either notes or long, heartfelt letters to Mary, to their second Mom, recounting what a tremendously positive influence she has been in their lives. One of them wrote, “Thank you for making us all better women.”
She touched so many people in so many ways. One thing you cannot cheat is another person’s heart, and this she never even tried. She thought the best of everyone, and tried to temper those less charitable impulses in me. She never took, only gave. She was depressed, to the best of my memory, exactly once in her life, and was mystified by that experience. I remember thinking, “Welcome to my world.”
I don’t know that I ever let her fully in to that world. I’m not sure she ever would have really understood the maelstrom which is my consciousness. I don’t regret it. I don’t regret looking at her, back in college those decades back, and thinking, and saying to my friend Tim Jones, “I’m going to marry that girl.”
I told her, too, on our first date, and for some reason that failed to scare her away. So maybe she saw something too. Maybe she somehow ferreted out some inner quality that made her think it would perhaps be worthwhile for her to allow me to tag along with her in life.
Mary always thought the best of everyone, and if she didn’t, then you were a particularly useless piece of human flotsam.
I remember once, when I lived in San Francisco, and was going through a particularly difficult period in my life, I made a new friend, Bob Houseman, let us call him, who rapidly became my best friend. What a wonderful man he was, a boundless personality, someone who lifted you up and made you shine.
When Mary came for a visit I couldn’t wait for them to meet. I couldn’t wait to show off the friend in whose presence I reflected so brightly. I remember so vividly riding down Lincoln Boulevard on a brilliant sun-spanked day, in Bob’s Fiat Spitfire convertible, cherry red, of course, with Mary in the passenger seat and me sprawled across the back seat, tooling alongside Golden Gate Park. It is a memory which remains inedibly imprinted on my mind.
I don’t remember where we went next, or what we did, but it was a perfect day. Until he dropped us off, and I said to Mary, “Isn’t Bob great?” And she said no. No, he wasn’t great. She thought he was false. She thought he was dishonest. I was hurt by her lack of regard, by her blatant hostility. I questioned her judgment and thought she was wrong, wrong, wrong. Until just a matter of days later, when Bob proved how right she was. I don’t even remember what he did, or what he said, but whatever he did was the kind of thing that friends didn’t do to friends. It was the kind of betrayal that fundamentally dishonest people commit.
Bob had entered not just my life. He had become that person to so many of us, and none of us recognized he was a fundamentally dishonest person, except Mary. Mary, who never judged anyone, judged him, and found him wanting.
That’s what I lost today. She left a Mary-sized hole in my soul that memories alone can never fill. She left two wonderful kids with a future bright and beautiful. She left a life she filled with beauty and grace. She left a circle of friends, a circle larger than she ever knew of people of who loved and valued her.
And she left me. The doctor gave her a year. She took six, and they were wonderful years together. I told her early in this journey if she was strong enough, she could help me get through this. She was. Strong enough for us both. I know life goes on, and so will I. But for now, I want just want to sit alone in the dark for a month or two, or maybe three. And then we’ll see.
June 28, 2016
“Don’t be sad.” That’s what Mary told Dr. DeBono when he dropped in for a visit before she got discharged from the hospital yesterday. His demeanor is one of empathetic sadness. It is as if he is absorbing all his patient’s paint and sorrow. Mary asked him once if he could turn it off when he went home. “I try to,” he replied.
“Don’t be sad,” she told him yesterday. “I’ve had a wonderful six years.”
Last Thursday we went to Karmanos for a consultation with Dr. Paximadis, the radiation oncologist. The plan was to do a course of radiation on her jaw before we brought in hospice but the consultation turned into a more wide-ranging examination, and when he heard about her fall the week before, coupled with the weakness in her legs, the doctor ordered an emergency MRI.
Then followed a few hours of being shunted from hallway to hallway, room to room, with some nurses not quite successfully communicating with other nurses. Finally she disappeared through the doorway to the big magnetic machine, and I went to get a bite to eat.
When I returned she was lying on a bed, rather loopy, and no one really saying much of anything. Finally one of the nurses explained we were waiting for a room to open and someone from transport to take her there. Turns out they were admitting her, but no one could say why.
We got to the room. The nurses were, as nurses usually are, cheerful and helpful, but no one could explain why she’d been admitted. Finally around 9:00 a doctor came in and explained that the cancer had gone to Mary’s spine, and there were three small fractures. They were going to start radiation on her jaw the next day, and run CT Scans so they could set up a framework for spinal radiation as well.
Matt and Nora had come down to spend the weekend with Mary, and ended up sharing time with her in her room. Actually, Nora subbed for Mary at the Garden Center’s Garden Tour. She had been scheduled to work at one of the houses as cashier from 1:00 to 4:00 on Friday. I thought it might be nice if Nora could be there with her, since she wouldn’t be able to do it herself. As it turned out, Nora ended up doing it by herself.
Saturday another doctor came in and informed me that the cancer was in Mary’s brain. I sort of thought it might be, given Mary’s intermittent lucidity. She, of course, maintained it was Matthew and I who were having lucidity problems. She was perfectly fine.
Sunday was another story. I went to church. People asked about Mary. I tried to give them an update but suddenly I found it hard to talk, or breathe, or see, for that matter. It was as if I were seeing everything from under water. Weird, huh? I saw Bill Wrobel and he gave me a big hug, and I cried a little, but was unable to say what I wanted to say, which was, that Mary had held it at bay for six years, but now it was in control. Cancer was taking a victory lap. Cancer was having its revenge. A vengeful beast, cancer is.
But when I got to the hospital, Mary was much, much better. So much so that Matt and Nora, who had decided not to return to Traverse City, decided they could, and did, with my blessings. Monday she went for radiation, and then we sat around for hours waiting for the doctor who was coming to fit her with a back brace. He finally showed up around 5, and we were out of there around 6:00 pm.
Laura was at the house to meet us, and Margaret had brought milkshakes by. We watched the Detroit fireworks on tv, reminiscing about the times when we went downtown to see them. A spectacular show, even though television can never do them justice. The picture was on the screen, the sound came through the window ten seconds later.
Then this morning Mary was very tired, and not too connected to reality. Laura and Therese came over, just about the time I completely lost it. After trying for a couple of hours to get Mary dressed to make her radiation appointment, I realized there really wasn’t any use in trying to get there. I called. They called back, and we agreed it’s time to bring in hospice.
Maybe she’ll continue to alternate, good days for bad. Maybe hospice can get her medications right. Maybe we can go on for a little while longer.
June 16, 2016
Such a Complainer
It has been a busy three weeks since my last update. My parents came in for a five-day visit from California, followed by Mary Lou and Cordelia, two of Mary’s friends from college days. I picked them up from the airport and left town the next day to go up north and put some much needed work in the vineyard and grounds, leaving them to spend some quality, though sadly also good-bye time together.
Back when I first got to know then like then love Mary, Mary Lou and Cordelia and I didn’t exactly get along. It was some years later when we finally understood we had all been jealous of Mary’s affections. They didn’t want to lose her to “some boy,” and I didn’t want to share her attentions with anyone. It’s nice to know we can change and improve as we grow more mature.
When they left, our friend Rachel drove Mary up to Glen Lake, where she stayed for a couple of days. Mary and I remained until our return trip Saturday. We spent one afternoon at the brand spanking new Cowell Family Cancer Center in Traverse City when Mary hit another low hydration wall. A doctor friend in town made some calls which allowed us to get into the infusion center without long delays or another blizzard of paperwork.
Matthew, Nora and Emily spent the next three nights at Glen Lake, spending valuable one-on-one time with their mother and mother-in-law. It is heartbreaking to realize every interaction has a valedictory air about it these days.
We drove home on Saturday, taking a three-hour detour so Mary could visit Pond Hill Farm, north of Harbor Springs. Driving up the Michigan coast is such a wonderful experience. It is truly beautiful countryside, very settled and tamed in the English manner, with blocks of wildness interspersed. People with vision have done their part to ensure that much of what remains will continue to do so as the landscape is dotted with signs declaring this stand of trees, that meadow, and the marshland next to it are designated nature preserves.
We had a long drive home, and the following day, our anniversary, we spent alone, at home. I recalled, vaguely as in the distant past, our night on the town for Valentine’s Day, staying at the aLoft Hotel on Grand Circus Park, and having dinner at Joe Muers. Was it really just four months ago? We watched a James Bond marathon. It’s what you do for your 34th. Go ahead, check the traditional anniversary gift chart. 25th is silver, 30th is pearl, and 34th is vodka, shaken, not stirred.
On Monday Mary had an appointment with Dr. Raza to review the Cat Scan of her jaw and discuss options. It was set for 8:45. Unfortunately, we had to cancel. Mary couldn’t answer the bell. In fact, she didn’t get up until around 4:00 pm. She was up much of the night coughing and taking various medications while I lay in bed wondering if she would make it through the week, and if she had bought my Father’s Day gift early.
When I got up the next day I found an email from my sister informing that my father was in the hospital with a series of bacteriological infections. Sometimes you just laugh because that’s all they’ve left you.
That afternoon we met with Dr. Wiese to discuss the immunotherapy trial. At first she was all gung-ho about getting Mary started, well, maybe after a course of radiation to reduce the tumor in her mouth. Okay, maybe, upon consideration, we should think this through. Basically, what it comes down to, is even though Mary qualifies genetically, she really isn’t strong enough to survive the treatment.
That was one of the reasons we kept the appointment, out of curiosity as to what it would entail. And Dr. Wiese told us. It would take about 3 months of unpleasantness before any positive results would show, if any positive results would show. She would get worse before she got better, and we reluctantly agreed Mary couldn’t afford to get much worse. But we made a follow-up appointment in a month, and if Mary rallies and is so inclined, she can still get into the trial. Had a bit of the wink-wink, nudge-nudge to it, that last bit.
Today we saw Dr. DeBono, the supportive care physician. He is a unique figure, so somber, it’s as if he is absorbing the weight of his patient’s pain. Mary asked him if he was able to turn it off when he went home. He said he tried to. We discussed Mary’s condition, worsening, and her options, not so many, and not so rosy. He used the term tipping point in reference to her chances of getting strong enough to enter the trial.
We talked about an interview with hospice. We talked about the tumor in her mouth. We looked at the strange lump on her shin. I would point to places on her body and remind her to mention what was going on there. It was around then that Mary apologized, “I’m sorry to be such a complainer,” she said.
I remember hearing a violinist draw high notes of such exquisite clarity from the strings that my eyes watered, without reference to my emotional state. I’m pretty sure it was the same case at that instance, something about the sound of her voice at the perfect pitch, that’s what made my eyes well up. I’m sure of it.
So, we are well into those days of days. It is a matter of days, or weeks, or months. We don’t know. It’s the knowing but not knowing which is the hardest part. On her good days we still make plans. On her bad days, she wonders why she bothers.
Somebody told me he thought in some ways it must be harder on me than on her. I thought, “No, it’s not even close.”
May 25, 2016
There have been good days and bad days. Good days, when friends make a point of calling, then dropping by, or sending flowers, or inviting themselves over for dinner, and bringing dinner with them. And bad days, when Mary can’t get out of bed, and feels guilty for “being so lazy.” “I feel like I’m sleeping my whole life away,” she complained the other day.
That’s one way of looking at it, I thought. Another is you’re sleeping away so you can enjoy the life you have left.
Last Thursday was a not so good day because Dr. DeBono shared the biopsy report with us. This is the one from the sore in Mary’s mouth, the one that half the experts thought might be, and the other half were adamant it wasn’t cancer. Well, it was. Not much they can do about it. Maybe radiation for palliative purposes.
Then somebody in the field told me hospice often doesn’t like it if the patient undergoes radiation. I said it wasn’t curative treatment. He said it didn’t matter. It wasn’t a procedural issue as much as a financial one. Apparently hospice is paid for their services, and treatments like radiation come out of their share. Well, maybe we won’t go that route, then. After all, it has been Mary’s goal ever since she got diagnosed with cancer to make sure as many people could get as wealthy as possible.
Yesterday was a good day. Mary went to book club, then in the evening there was a reception at the Services For Older Citizens, or SOC Center, where Mary and her friend Molly had designed a culinary herb garden. One of the members of the Herb Society thought it would be a good idea to present her with a commemorative bench. About 50 people were there, on a perfect evening. Mary was suitably gratified. How much nicer it is to be present at the installation of a commemorative bench than to be remembered with a memorial one.
Also yesterday I received a called from Karmanos regarding a Phase 1 Clinical Trial that has opened up. It involves immunotherapy, the Holy Grail of cancer research. There haven’t been a lot of immunotherapy options for colorectal cancer, so this would represent cutting edge treatment, with a chance for substantial and dramatic improvement.
Mary qualifies genetically. Whether she does physically is open to question. She has an appointment on June 14 with Dr. Wiese, the Clinical Trial doctor, to see if she is in good enough shape to handle the treatment. Of course, we will want to know as much about the process as possible. Even if she qualifies, she may not want to do it. Mary’s first reaction when I told her about it was, “They want me to take another drug?” Her experience with Stivarga has put her off drugs, at least for the time being.
In a way this last-second extension of a sliver of hope reminds me of those old melodramatic serials, which used to play in what were known as movie houses, each episode of which would end with our heroine tied to the railroad tracks, a locomotive charging down the track at her. (I read a book about the history of cinema, that’s how I know about this. How old do you think I am?) Anyway, here we are at death’s door, and Dudley Dooright comes racing in to save the day. Or not. Time will tell.
Meanwhile, my parents arrive for a few days’ visit tonight, then Mary Lou and Cordelia, two of Mary’s old college friends will be here for a few days. I will take advantage of the latter interlude to head up north for some intensive work with weed whacker, chain saw, mower and hoe. Mary will join me on the 6th for a few days.
We continue to make plans, because that’s what you do. Don’t be afraid to visit. Call first, to see if Mary is up to it. don’t be offended if the answer is no. It’s nothing personal (in most cases), just not the right day. Thanks for being there to support us. It means more than you will ever know.
May 16, 2016
My last post ended on a down beat. It was written without a lot of enthusiasm, and with less hope. The following week suggested, if anything, I had succumbed to an excess of optimism. That week was, without question, the worst of Mary’s life. It seemed we were spending half our time at the Karmanos Acute Care Center, where Mary received infusions of pain killers and saline solution to rehydrate her.
She couldn’t, or wouldn’t eat, because food made her sick, and it hurt her to swallow so she wasn’t drinking enough fluids. It was on Monday, May 2 that she hit bottom. She was crying out in pain. This is a woman who gave birth to two children without making a sound, and she was crying out in pain. We kept wondering whether to go to an emergency room, and if so, which one.
Eventually, though, morning came, and and we drove to the clinic, and they started doing things that made her feel better. Dr. DeBono, the supportive care specialist came in. He prescribed a stronger dose of morphine to manage Mary’s general pain, with norco to address more acute pain. He also suggested hospice. He said hospice gets a bad rep, with people assuming they only come in at the very end. That’s not true, he observed. They come in when there is nothing left to do, but that doesn’t mean it’s the end.
So Mary got out of the hospital that Tuesday, and by Wednesday morning two very worried kids and one worried daughter-in-law were burning up the airwaves and texting up a blizzard trying to find out what was going on. This is what happens when you leave someone like me in charge of communications.
After that horrible night on the 2nd, I wasn’t sure Mary would survive until Friday, when the kids were planning to come down from Traverse City, for a rugby match and Mother’s Day Brunch. So I texted a heads up to them from the hospital. Once Mary stabilized and it looked like things were going to be okay, I relaxed. Relaxing is good. Completely forgetting to let them know things were better? Not so good.
The weekend was very nice. We collaborated on Mother’s Day brunch, after everyone went to church together. Better than any restaurant in town was my verdict, though the string quartet or soft jazz combo was noticeable by their absence.
Before the weekend, however, we got to work on necessary housekeeping. We met with Pastor Justin to review funeral plans. When discussing possible hymns, neither Mary nor I could come up with the name, “Amazing Grace,” which was ironic since it was while singing that hymn, some six years ago, we realized there is no such thing as information management. Everybody will know soon enough that you have cancer. Cancer doesn’t just move into your house, cancer becomes the house you live in. We realized that because by the end of the hymn we both had tears streaming down our cheeks, and it was obvious to everyone around us that something was wrong.
That something is more wrong now than ever before, but thanks to this new drug regimen, Mary feels more comfortable. Her appetite is back, though her sense of humor, sadly has not returned. I’m delivering some of my best material and, nothing. She doesn’t laugh. She doesn’t react at all, except for a brief roll of the eyes and a martyred shrug. Come to think of it, that’s how she’s always reacted . . .
Seriously, two weeks ago we were discussing the likelihood of her still being here when my parents came to visit at the end of the month. She thought maybe she would be. “Then our next target is our anniversary, June 12,” I said.
“I don’t think I’ll make it that far.”
Now, however, we’re making plans for that day. So we have been granted an amazing grace period. For how long, who knows. But we’ll keep taking it until it stops coming. We went Up North last week, to see the lake house, and the vineyard. At first it was just a distant goal that we could go. Then, when it appeared likely it would work, it assumed in our minds the stature of a poignant tour, a chance to say good bye. By the time we headed back downstate on Friday, we were already making plans for when we would return.
So there is hope, in the short term. Yesterday we were back at Karmanos for a follow up visit with Dr. Raza, the oral doctor, who had prescribed a drug to deal with the sore on her gum. One doctor, a periodontist, had been afraid to touch it, theorizing it might be cancer. Others, dentists and Dr. Raza, discounted that likelihood. Yesterday he said he didn’t like the way it was growing. It didn’t look like an infection, so he was going to take a biopsy.
It really doesn’t matter, was basically what he told us, since even if it were cancer they probably wouldn’t do anything to treat it. I asked if it he suspected it was further metastacization. He didn’t know. It could be an entirely new cancer, but it wouldn’t change things. The treatment would involve rather serious surgery, major discomfort, and it wouldn’t have any effect on the underlying condition.
We’re going back to Karmanos to see Dr. DeBono on Thursday, with a stop on the way at Elmwood Cemetery to pick out a plot. By then we should know if the biopsy is positive or negative.
But let me leave you with a positive note. When Emily was here before Mother’s Day she accompanied us to the funeral home so Mary could pick out her casket and funeral arrangements—okay, maybe it doesn’t sound all that positive, but work with me on this one. We looked at different plans, and different price ranges, and then we went into the showroom where we could see the actual coffins. We looked at prayer cards and visitation options, and discussed all the various logistics of the “death care industry.”
When we were finally done, with everything in place, Mary said, “Yay,” which is how she always characterizes a successful shopping outing. And that’s the spirit we’re going to keep going as long as we possibly can.
April 27, 2016
We were supposed to fly to Cancun today, for Jean and Chris’ wedding. Instead, we’re at home, monitoring Mary’s condition, trying to decide whether to go to the hospital, trying to decide if the nurse we saw Monday is right, and these are side effects of Stivarga, or if Mary is right and there’s some serious blockage inside her. She was certainly right about running a fever, and the nurse appeared to be more invested in accurate note taking than in the well-being of her patient.
Maybe Mary is just fighting a bug, on top of everything else. After all, the fever seems to have broken last night. This all started last Tuesday, when she woke up in serious pain. Gas pains, she called it. Maybe yes, maybe no. Our friends James and Sophie came in from Montreal on Wednesday, for the Racquets Weekend at the DRC, and there was a whole series of events planned. Mary made most of them, though often not for long, and often not until the last minute, when she decided she was strong enough to attend.
Then, on Sunday, she failed to answer the bell. She didn’t feel up to getting out of bed. She was in pain, and nauseous, and didn’t want to eat or drink. We thought about the hospital, but didn’t know which one we should go to, and no one was returning our calls. Finally we called Katherine, a friend and nurse practitioner, who came over and got Mary to drink some liquids, showing me in the process that I shouldn’t be so respectful of Mary’s wishes. If she needs to eat or drink, she has to.
Now Katherine’s style is one of cajoling and couching requests in the form of a challenge. “I bet you can take another three sips of water,” and things like that. Me, I went for barking orders. Yesterday morning I scrambled an egg for Mary. She sat with it in front of her for awhile. “Eat your eggs!” I commanded. She looked at me, rolled her eyes, and said, “Did you really think that was going to work?” But she did eat some.
It was great to spend time with James and Sophie. I told Mary, Monday morning while driving in to Karmanos for a handful of appointments and what turned into two hours in the infusion center on a saline drip to rehydrate her, how much strength I’d gained from their visit.
Eight hours later, driving away from the center, all that strength was gone. So much so that, after sitting behind a car which failed to move for most of a green light, and then slid indifferently into the left turn lane, oblivious to my screaming “Quit your damn texting!” I pulled up next to him and glared at him until Mary said, “Oh, please don’t get into a fight!” Highly unlikely that, since it would have required the guy to look up from his phone, and who wants to do that in the middle of rush hour traffic?
So, here’s a tip to keep in mind if you ever find yourself in our situation. If they ask you if you want to watch TV when they usher you into the examination room, you can bet you’re going to be there for a long, long time before some CPN comes in and tells you she’s up to speed on your case because she sat across the table from one of the other nurses at lunch last Friday.
Which treatment kind of makes me think maybe it isn’t a side effect, and maybe it isn’t a bug, but maybe we’re starting the homestretch, and this is the way it’s going to be from now on, however long now on will be, and it won’t be pleasant and it won’t be pretty.
I wouldn’t mind being wrong. After all, there are some arguments you just don’t want to win. We’ll know more in the next few days. If it’s a bug or side effects, Mar will start to get better. If it isn’t, she won’t and then we shall see what we shall see.
April 15, 2016
So these are the days of long constraint, of late night wakening and sudden sorrows. These are the days when, if someone asks you how you’re doing, and it seems everybody does, you sigh and say “All right.” These are the days when you gather strength from a gesture, a pat on the back, a note in the mail, a pot of white chicken chili that magically appears in the fridge while you were at a movie (with tears clouding your eyes because you looked at the laughable old couple in the silly rom-com, and thought how unfair that you would not be growing old together like that).
We went to see Dr. Debono at Karmanos Cancer Center. He is a supportive care doctor, the specialist who helps you when nobody else can. The one who brings in hospice, at the end. Mary asked, “Realistically, how long have I got.” He said, “We should think in months, not years.” He also said if we had any plans, we shouldn’t put them off.
That’s hard to take, but it is something we always knew was there. High fives and trash-talking cancer was fun, and laughing in cancer’s face was cathartic, but we also knew cancer has a way of biding its time. It didn’t need to claim its pound of flesh all at once. It was content to lie in wait, confident at some point we would lay down our guard, and then it would pounce.
Mary has a lost a lot of weight, and looks really good, right now. But satisfying as it might be to lose weight without trying, there is something disconcerting about it, too. It means yes, something is very wrong.
She has started a new drug called Stivarga. The doctor said it’s not meant to cure her cancer, at best it will retard the tumors’ growth. It comes with a long list of side effects, far more than Lonsurf, that clinical trial she was on, the place holder drug that’s supposed to take Stivarga’s place. The one that didn’t work for her. So far, the side effects have been mild, and Mary will tell you she believes it is working. She can feel it, she says. Which is nice to hear.
A woman from the pharmaceutical company told me Blue Cross Blue Shield said there would be a $600 copay for the drug. I asked how that could be since we had already reached the maximum out of pocket expense. She told me she had asked the same question, and was told, “I don’t know, maybe it’s a penalty or something.”
So I called Blue Cross Blue Shield and quoted that remark. I said, “I don’t know, maybe it’s me, but I think having cancer is penalty enough. You don’t have to go around adding more.”
I kept asking how there could be a copay when we had already reached our maximum out-of-pocket expense. She kept trying to come up with something that sounded good. I finally said, “Maybe it’s a language thing. I’m dealing with English, in which maximum means the most you have to pay. But maybe in insurance language maximum means the very least you can expect to pay. Is that what it is? A language problem?”
She said she’s get back to me. I said, “Yeah, right,” because that’s what they all say to get me off the phone. She actually seemed offended, repeating, “I said I will call you back.” She sounded even more offended two hours later when I told her how surprised I was that she actually had called back. It was as if I had impugned her integrity. Who knew?
Anyway, she concluded we didn’t have to pay a copay because we had in fact met our maximum out-of-pocket expense. It’s always nice when you win one, though sometimes it would be nice not to have to fight them.
Last weekend Mary helped put on a tea for fifty at the Ford House. It was the annual Herb Society tea. A speaker came in from Virginia, and stayed at our house for three days. Mary was very busy, though she had more help than she usually does for this kind of event. She was up early and stayed up all day. I kept expecting her to crash. She never did. Sunday afternoon we were supposed to visit friends for a cocktail. I fully expected to call and cancel. But we didn’t. I started thinking maybe I was too pessimistic. Maybe she had more in reserve than I thought. The next day she was supposed to go to Partridge Creek to look for resort wear for our trip to Cancun at the end of the month. She was going to leave at 10:00. Then 11:00. Then, she thought, maybe 1:00. Since she was still in her night gown I suggested maybe it was okay if she didn’t go that day. Maybe it was okay if she did nothing all day.
We went on Wednesday, and walked in and out of a bunch of stores. She didn’t buy anything. Today she’s going to another mall with a friend to walk around and look at more clothes. I told her it would have been a very disappointing trip if that had happened to me, but she seemed to feel it was a successful day. I think I’ve actually shopped successfully maybe three times in my life.
So, the trip to Cancun is still on. We received an invitation to another destination wedding, this one at Lake Tahoe, in July. It came with a beautiful note from the bride-to-be, about the inspiration Mary’s courage and grace has given her, and how she wants our relationship to be the standard she and her husband aspire to in their own marriage. It made me cry.
We’re thinking about that one. Maybe. It’s not far from my folks, so we could go to the wedding and spend a couple days in Lodi. If Mary’s up to it. We’ll buy trip insurance again, because that’s how we do it now. It’s tough not knowing whether Mary will be up to it, but like the doctor said, we’ll keep making plans.
March 10, 2016
Thank You, God
We had the opportunity to spend a long weekend with our friends down in Florida so naturally, we took it. A beautiful home, on Sanibel Island, with access to the beach through a wild stretch of seaside vegetation. Mary told me one day, while she was walking through this miniature jungle, she stopped and said a prayer.
“I said ‘Thank you, God, for letting me come here.’ For this weekend, our friends, just for everything.”
“Everything, except the cancer,” I said.
“No, I even thanked Him for the cancer. It has made me appreciate life so much.”
I guess it does do that, it helps you focus. and we have been the recipients of that distinctive outlook for six years now. Or, to put it in perspective, Mary has now survived a full five years longer than the one year her original Dr. Doom gave her. So, yes, let’s be grateful. And let’s continue to accept those invitations, no matter how distant, no matter how far away.
We were looking at a destination wedding in Cancun, at the end of April. Mary said she wasn’t sure. It was too far in the future to plan with confidence. So I said we’d buy trip insurance. And we did, and we’re going.
We had a setback of sorts, a couple weeks ago, in the treatment realm, when, after Mary’s successful bronchoscopies, Dr. Philip said he didn’t think she should go back on Lonsurf, because it wasn’t fully working. This was the opposite of what he’d said before the procedures, but I’m getting used to this by now. Anyway, he suggested something called Stivarga, which is similar to Xeloda, the drug which didn’t really work for Mary but gave her serious foot and hand pain.
First, he said, he wanted to do a CT Scan. This was on a Monday in mid-February. Mary was very much hoping to leave that Thursday for Tucson. Luckily, we managed to snag a spot on Wednesday, so she could have her scan and beat it, too.
The next Monday we were back at Karmanos, at 2:15. At 3:15 we were still waiting. At 3:30 we were dumped in a room where we were informed Dr. Philip wouldn’t be seeing Mary, but his assistant Lynette would be. At 4:15 a Nurse Practitioner came in, introduced herself and proceeded to ask all the questions a health care provider asks during an introductory visit.
I started to get the sense that the CT Scan wasn't very positive, and that Dr. Philip was basically punting on Mary. That sense grew when the nurse said Dr. Philip had left us with two options at the last visit, and she was wondering which one we’d chosen.
This was a tad confusing as neither Mary nor I remembered receiving that assignment. He did suggest Stivarga, I said.
“Stivarga?” she said, sounding perplexed. That wasn’t one of the options.
“”Well, maybe you can find someone who is familiar with Mary’s case,” I suggested.
She did, eventually, manage to locate Dr. Philip, who made an appearance around 5:00, and told Mary he didn’t think Stivarga was a very good idea, that it probably wouldn’t work, and what she needed to do was try to get into a Phase 1 Clinical Trial.
We had that appointment last week, where we met the staff and learned the ins and outs, of Clinical Trials. We also learned that because of the length and progression of Mary’s disease, she doesn’t qualify for second or third phases, only for the preliminary trials. Dr. Wiese was very informative, very professional, and promised their Clinical Trial committee would review Mary’s status, and have an answer for us by this week.
So we went back this past Tuesday to learn that there isn’t anything suitable right now. There is a promising immunotherapy trial which should be starting in two months or so, and Mary is on a wait list for that one. Not the best of developments, but the good news is Mary still feels pretty good, her cough, while still harsh and present, has diminished some since her procedures. It doesn’t impose itself on her as much, and as a result, her spirits are far, far better than they were a month ago. As she says, “I feel like it’s given me months.”
Next week we’ll go back to see Dr. Philip, or whichever surrogate he deems appropriate, and find out if, as Dr. Wiese suggested, Mary starts taking Stivarga. In the meantime, it might be time for another call to M.D. Anderson, to see if they have any clinical trials for us to consider.
But here’s a thought to leave you with in closing. if Mary can thank God for her cancer, surely there are many more things you can be thankful for, as well.
February 5, 2016
Thank You, We’ll Be Here All Week
Mary underwent her second Endobronchial Argon Plasma Coagulation. (Incidentally, I thought I was going to have to publicly correct myself because everybody kept referring to it as a laser procedure, while my understanding was they didn’t use laser any more—however, yesterday just before they wheeled Mary into the Operating Room, Dr. Jahania responded impatiently to someone who used the term laser, saying, “It’s not laser. I wish people would keep saying it is.” Ah, vindication. Never gets old).
While we were waiting in the preop room for the team to get settled, Mary’s nurse came in to explain why she had to take more blood. For some reason the pre-admission blood tests taken at Karma's are good for a month, but post-admission blood taken at Harper expires in three days. Mary and I glanced at each other. The nurse said, “What?”
And Mary, right on cue, said, “Never say ‘expire’ to a patient in the Operating Room.”
That took me back to the wit she flashed at her first surgery, when friends said, “We’d better go. I think they want to close these curtains,” and she said, “Never say curtains in the operating room,” and, laughing, one of them said, “Okay, we’ll see you on the other side,” and she said, “Never say on the other side . . .”
A rare talent, this OR Standup, especially since she had to do the Standup lying down.
So, we had that going for us. And a nurse willing to share a laugh with us. An hour or so later, the doctor came out to tell me the procedure was a success, he had opened two air passages, and there was no need to do anything else at this time. He has no need to see Mary, but she should feel free to call him with any questions.
It took about an hour longer this week for Mary to recover enough to go home, but she bounced back in the evening, and had a very good appetite. Today we went back to Karma's where she had an appointment with an Ear, Nose and Throat specialist who prescribed some pills and thought even though her cough probably was caused by her lung tumors, there was enough congestion in her head and throat that it likely exacerbated the problem.
Between the new medication, and her rapid recovery today, we’re fairly optimistic that her cough will be, if not defeated, certainly beaten well back. Which will be a very good outcome indeed. In fact, except for that whole incurable cancer thing, she’s in really good shape.
We’re looking forward to finishing the month with trips to Arizona and Florida, and in just four weeks, celebrating her 6th anniversary. Never thought we’d get there, and haven’t felt this positive about pushing the finish line further down the road for quite some time.
January 28, 2016
My, That Was Fun
Today was basically a good news/bad news sort of day. The good news? Mary went under, underwent the procedure, and came back to us. The bad news? She has to do it again, at least one more time.
You’ve heard the saying, that was fun, let’s do it again. That’s pretty much what Dr. Jahania told me this afternoon after Mary’s procedure. He said it was successful, with no complications or other problems. He did say the tumor was larger than he expected, and had almost completely closed one airway. It was too large to handle in one procedure, so he would like to do it again, maybe next Thursday, if there is an OR opening.
He stressed that he wouldn’t suggest this if he didn’t think it would do some good. Which means, basically, he is optimistic. It’s hard to tell sometimes with Dr. Jahania. He doesn’t give a lot away. Sort of like House, I suppose, without the cane. But at least he thought things over before he started cutting. (I know if I were ever in the emergency room with some non-defined malady and I saw House enter the room, I would flee, because he would immediately diagnose some rare disease, amputate my leg, remove my spleen, accidentally blind me, and then decide it was “just a cold.” But I don’t think he’s on the air any more, so we’re probably safe).
Anyway, we’ll do this a couple more times, and if all is successful, Mary won’t be coughing as much, and the quality of her life will greatly improve.
As we got Mary prepared for surgery, as a steady stream of nurses, doctors, interns and trainees passed through the room, asking her the same questions, and making the same notes on the same sheets of paper, it struck me again what amazing people nurses are. For the last almost six years we have been meeting all kinds of nurses as Mary has undergone a vast array of procedures and processes, and all of them, male or female, have been so kind, so considerate, so ready and willing to put her at ease (and to tell me to just shut up). They are a rare breed. Nursing is a gift, and we are lucky to be beneficiaries.
While Mary was in surgery I got to meet Nanci Burrows, the Karmanos Cancer Center Director of Customer Service, who had received a copy of my horrible, awful, no good day at Karmanos update. She had called, apologized, and promised to get to the bottom of things. I stressed at the time that I hadn’t written it to complain, rather just to share a day-in-the-life-of experience, and that what made the day so bad was not the experience itself, but the bad news at the end of it.
I also told her I would be satisfied if Karmanos would give a copy of my novel to each new patient. She asked me about it, and I gave her a brief description. Then she asked if I thought it would help the patients. I replied, “I don’t know and I don’t care. I just want to sell a lot of copies.”
Well, she came to visit me in the waiting lounge today, and bought a copy of REBOUND. Which I thought was very nice. No word on whether Karmanos will be buying several thousand copies, but don’t hold your breath.
I’ll let you know what next week will bring, but in the meantime, thanks so much for your thoughts, prayers, hopes and words of encouragement. They mean so much and they last so long.
January 15, 2016
That Boat Has Already Sailed
On January 28 Mary will undergo a surgical procedure called Endobronchial Argon Plasma Coagulation, which involves inserting a tube called a bronchoscope into her lung, expelling some argon gas which is then zapped with a high-voltage electric current. If all goes well, this should result in the breakup of a tumor in her right lung which is currently encroaching on her air passage, causing a really painful sounding cough, and interfering with her ability to breathe.
We got the ball rolling this week when we met with Dr. Soubani, the Karma's Cancer Center lung specialist, who after examination recommended a course of radiation. Naturally, Mary was concerned about when this could start and how long it would last, pointing out that we had plans to go to Arizona and Florida next month.
I suggested perhaps fixing her lungs might have a higher priority. The attending health care specialists seemed to agree with me. Anyway, after exploring our options, it looked like the course would be finished before the middle of next month, so our travel plans were intact, except for a visit up north to taste our wine and help make a final determination on the style we wanted to see in the bottle, which we would have to cancel.
Unfortunately, the next day, the radiation specialist, Dr. Paximadis, told us he couldn’t provide radiation because of serious and potentially fatal side effects arising from her previous courses of Avastin. So it was back to the drawing board, with a new doctor, and a new procedure.
It was during her meeting with Dr. Soubani that Mary mentioned she sometimes coughed up blood. That was one of the reasons the doctors and nurses were so intent on finding a treatment for her. It was also the first time I had heard about it.
Mary said she didn’t want to tell me, because she didn’t want me to worry. I told her, “That ship sailed a long time ago.” And it has. In case you’re wondering, it’s not a cruise ship, rather a battleship, and it keeps circling the harbor, firing salvos of dread and despair at the hapless defendants.
Having been downtown most of this past week, we’ve taken advantage of it by finally starting to hit some of Detroit’s myriad new restaurants for lunch. It’s something new, this knowing there are some restaurants we’ll never get to. It’s been a long, long time since Detroit has had this sort of problem.
So, this is how we live now, making the best of the situation, trying to find opportunities in the challenges; making plans, sometimes changing them, sometimes cancelling. Mary suggested maybe we could fly from Arizona, where we would be staying with Wendy and Tom, straight to Florida, to meet Mark and Molly and Bryan and Rachel in three days’ time. I suggested we could rent a car, maybe drive to Miami, see my Uncle Peter, or go to Key West, which I’ve never seen.
Mary listened to my planning, not really commenting, as she does sometimes. So I asked her if she had a problem with it. After all, it was her idea. She said she wasn’t sure. Maybe she wouldn’t feel well enough to go. I told her we should just make our plans. We can cancel them if we have to. Because, that’s what you do.
Anyway, that’s the plan. Surgery on the 28th. It’s supposed to be pretty basic, an outpatient procedure. But I doubt we’ll be checking out one of the new restaurants that day.
I’ll keep you posted. Don’t be afraid to drop by or call.
December 22, 2015
I had a blemish on my face last week, which was threatening to come to a head. Suffice it to say, it wasn’t pretty. Since we were getting ready to return to Karma's Cancer Center, to see what options they might have for Mary, I thought maybe I should put a bandage on my face. Or not, I mused. Maybe they would see it and inform me I had megalomanialsarcomaticmelanoma or something, to which Mary replied, “Oh no you don’t. You’re not dying before me.”
And I said, “More than five-and-a-half years in, and we’re still joking about cancer.”
Which is probably one reason Mary’s still here five-and-a-half years later. I can’t say she doesn’t take it seriously, because it’s hard not to, but she refuses to let it wear her down. We could all learn from her. I could learn from her. I wish I had last Tuesday when I broke down and cried on her shoulder. I apologized. She said it was okay. But it wasn’t.
I tried to explain it to my friend Dave, whom I see once a year during the holidays, and he gives me an update on his cancer, and I give him one on Mary’s, when he told me it was okay, saying, “I probably cry once every three days.”
“It’s okay for you to cry,” I said. “You have cancer. But it’s not okay for me to cry because that means I’ve given up, and the only job I have is to believe.”
Anyway, we went back to Karmanos, and things worked more smoothly. Dr. Philip was back, though still fighting a cold. He told us, after reviewing the CT Scan, that he wanted Mary to stay on the medication. Even though a couple of the tumors had grown, including the one in her lung which encroaches on her air passage and causes her to cough, most of the others stayed the same size.
He explained that with this drug they don’t really look for shrinkage, and, frankly, there just aren’t any good alternatives out there. So Mary’s back on the best option available. It may not be working perfectly, but it’s doing its primary job, which is keeping her alive.
We had our Christmas party last Saturday. Emily’s friend Claire, and our friend Katharine came over to help Mary and Emily with the preparations. It was good they were both there, because Mary took a couple of breaks, which she’s never ever done before. But she stayed on her feet until we said goodbye to the last of the guests (except for those who didn’t leave for hours) sometime after midnight.
As I clarified to the doctor when he asked Mary if she had energy, and she said, no, not really, her energy is good. It just doesn’t last very long. But this is our new normal. Short term plans include Christmas with the kids, a trip for Mary to Arizona in February, and then down to Florida with friends. March is cooking in Ireland with Emily and Nora, and then, in April, a friend’s daughter’s destination wedding in sunny Mexico.
Those are the plans. I expect us to keep them.
December 8, 2015
A Day in the Life
Yesterday we drove through thick fog in rush hour traffic to reach Karmanos by 9:00. We had a long day scheduled, maybe four or five hours, we thought, with labs, a CT Scan and then doctors’ appointments. The blood-drawing went off without a hitch, and we left the lab accompanied by a blue-shirted navigator who would guide us through the warrens of the complex to a place called The Rock, where Mary would get her scan.
Only when we got there the receptionist couldn’t find a record of Mary’s existence. Her attitude suggested this was somehow Mary’s fault. She asked for paperwork and Mary handed over what she had. A few minutes tapping away at the computer and she said, “Okay, there you are. Just go down this hall, they’ll take care of you.” She added, looking at me, “You can go too, there’s chairs down there.”
There were, too, about four of them, each of which had a wheelchair in front of it, on which the wheelchair occupant’s companion, looking like he or she should be in one too, was seated. So I wandered back down the hall. No sooner was I settled in than another navigator appeared to tell me my wife was waiting at the end of the hall.
She informed me that this particular CT Scanner wasn’t set up to scan clinical trial patients, so we headed back, feeling like rats caught in a maze. Our navigators guided us, and soon we were back on terra firma. We entered a new waiting room where the receptionist seemed much more interested in doing her job. We sat next to Mr. Johnson, who would turn out to be our companion for much of the day. He looked remarkably like Morgan Freeman, and viewed life with a healthy dose of whimsy.
They called his name, I said, “Good luck,” and two more patients entered the waiting room. One of them, a young girl in some pain, said she wanted some water. Her mother scowled and growled and finally complied. Then Mr. Johnson came back, and said the machine was broken.
We sat there for a couple of hours, while the room steadily filled, while Mr. Johnson’s name got called again, and I wished him luck again and then he returned again because the machine was still broken. We called Angel, Mary’s primary nurse, to find out what we should do. She told us to come to the clinic, they’d do her exam and order the next course of medicine, though she couldn’t start taking them until after the doctor had reviewed the scan.
We headed to the clinic lobby and waited for them to call Mary’s name. Over five-and-a-half years of sitting in chemotherapy labs and cancer clinics, waiting rooms and lobbies, you get used to seeing things which ordinarily might give you pause. You learn to accept grotesqueries with equanimity.
For some reason on this day nature pulled out all her stops. Every piece of freak show imagery imaginable was on display. There was the girl in the wheelchair with the face of a woman and the body of a little girl, whose mother rocked her and cooed, and whispered to her. There was the woman in the hijab who stared so boldly and so blatantly at the the girl with the face of a woman and the body of a little girl, whose face bore an expression which was in itself a hate crime.
There were the morbidly obese, the painfully bent, the gnarled and twisted, and those of indeterminate sex; they were there en masse, as if depravity had announced a casting call. There was nowhere to avert your eyes, and you felt guilty just for being alive. It was that kind of day. We finally received our summons and went behind the magic wall to visit Mary’s nurses and doctors. They reiterated Angel’s message that Mary could take the next course with her, but she couldn’t start until they saw the results of the CT Scan. Her doctor said she ordinarily didn’t like to discuss things like scans over the phone, but she was confident that the results would be good, so if Mary didn’t mind, that’s what she would do.
Then it was 2:00, and time to return to radiology. Now, Mary had drunk the contrast liquid at 10:00, and hadn’t had a bite to eat since 8:00. She couldn’t eat now because it might interfere with the scan. When we returned to the waiting room Mr. Johnson was still there, and greeted us with a rueful smile. But then the preternaturally cheerful nurse popped up to announced that the scanner was finally fixed.
She summoned Mr. Johnson. I told him I wasn’t going to wish him good luck this time. He chuckled. And left. And came back ten minutes later as the receptionist got on the phone with Harper Hospital to report our scanner was having “glitches,” so could she send some patients over there?
More navigators appeared, pushing wheelchairs for those who needed them. We set off, like refugees from the cancer wars, as we made our way through a warren of subterranean tunnels which connected the entire medical center. When we arrived at Harper’s radiology lab the receptionist acted as if he’d had no warning we were on the way.
One of the patients already waiting there, his skin as black as freshly-laid asphalt, his manner and diction equally evocative of the street, leapt to his feet and asked if we were going to go before him. The receptionist just glared at him, and he replied, “I jes ast one question. Thass all. Damn doctor tryin’ to take money from my insurance, sheeit.”
Moments later they called his name and he sprinted for the door, determined not to lose his place in line. While he was gone the rest of the patients got punctured and poked and ready for their own scans. They called Mary’s name, so she was gone when the complainer came out. He announced he was gone, “Like a rolling stone,” he said. “Like Papa was a rolling stone,” he clarified.
“Wherever he laid his hat was his home,” I observed.
He turned to me. “You know dat? The Temptations?”
He started to sing. I joined him. We got to “When he died,” and I finished with a flourish, “All he left us was alo-o-o-o-o-one.” He said, “Oh yeah, you a Detroit boy. Oh yeah.”
I glanced over at Mr. Johnson. His bemused expression made him look even more like Morgan Freeman.
Then Mary came out, we said our good byes and nine hours after we arrived, we headed back out into the fog and rush hour traffic. We got home around 5:30 and I reheated some spaghetti.
And that’s where this one was going to end, only while I was working on it, Mary got a call from the doctor who told her not to take the pills. The scan showed that they aren’t working. She says Mary’s still in good shape, and she’s confident there will be a trial she can take part in. She’s got an appointment for next Monday.
We’re moving ahead with our Christmas plans. Parties and dinners, and the kids coming down from Traverse City. The house is decorated and everything looks great, except for the lack of snow. We’ll keep moving ahead and defying the future. I’ll let you know what next Monday brings.
September 15, 2015
Actually, just two choices, but that’s two better than none. After returning from Houston we met with Dr. Philip at Karmanos Cancer Center, in the Detroit Medical Center. We were there to determine whether Mary qualified for adjuvant testing of TAS-102. The initial indications were positive, so we began the process of assembling the myriad of test results and procedures Mary has undergone over the past five years.
One of the most important players was her oncologist, who needed to provide documentation that each of Mary’s chemotherapy regimens had eventually failed to work, thereby qualifying her for refractory status, a necessary precursor for taking TAS-102. He tried to dismiss this obligation with a brief, two paragraph note. Dr. Philip’s team required a bit more, so I took on the task of reading through more than five years’ of insurance claims (a stack five inches high), to delineate the start and end dates of each treatment, and the course of drugs administered during them.
In theory, all those records should have been on a computer, and it would have been the work of a few moments to press the right key and transmit everything to the appropriate office. But, apparently no one could be bothered to do that. It is discouraging, though perhaps not surprising to learn that, though they may at first present themselves as hearty and upbeat, encouraging and seemingly committed to their patient’s well-being, or at least survival, at the end of the day medicine is a business, and when doctors can no longer see their patient as a revenue source, then, sometimes they can no longer see their patient.
Or maybe they just grow calloused. Having lost so many patients over the years, maybe they just learn one day that there is a point beyond which they cannot not expend their emotions; there is a point where they have to let go, where they have to stop caring, because caring no longer works.
Maybe that’s the case, but they could still fill out the forms in a timely manner.
At any rate, once the results were compiled and assembled, Mary was told she was likely in. Just one more interview, which took place yesterday, when a nurse came in to ask Mary about herself, and how she was doing. One of the PA’s popped in from time to time, “just to listen.”
When question time ended, one looked at the other and said, “She’s a 1?” The other agreed. Mary asked what that meant, and they said it was her ECOG score. They thought 1 was acceptable, though 0 was preferable. The ECOG score, developed by the Eastern Cooperative Oncology Group, is a scale ranging from 0 to 5, with 0 meaning normal, no complaints, and 5 standing for dead. A score of 1 means Mary is “Symptomatic, but completely ambulatory. (Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature. For example, light house work or office work).”
It’s rather chilling to see a chart developed to so clinically gauge a patient’s status. But the important thing is, Mary left Karmanos yesterday with a package of pills which she will take, four at a time, morning and evening, for five days. After two days off, she will repeat the dosage. Then, after 16 days off, she will return to Karmanos, have more tests, and get a second dose. This will continue for as long as it is viewed effective.
We’re planning for this to go on for quite awhile, as we won’t start building our tasting room until next spring, and before that, Mary is taking Emily and Nora to Ireland for a cooking class. (I know, I know, going to Ireland to learn how to cook? I mean, isn’t this the place where a plate of french fries and a six-pack of Guinness comprises a seven-course dinner?)
During the run up to the Clinical Trial, Dr. Dasari called from M. D. Anderson to say Mary had qualified for a Phase I Clinical Trial. He agreed that she would be better served by beginning the TAS-102 treatment. It was refreshing to have someone view Mary’s disease as the focus of treatment, rather than as a revenue stream. Not that Anderson gives their treatment away. They aren’t cheap, in fact they seem to feel they can charge a premium. It will be interesting to see how much our insurance company respects their front-running status.
The bottom line, though, is Mary will be receiving treatment at Karmanos for the time being. Incidentally, yesterday we also got the results of the microsatellite instability test, which, as you may recall, is a form of genetic hypermutability which results from impaired DNA mismatch repair, or MMR. Unfortunately, Mary tested negative, which means she doesn’t qualify for immunotherapy treatment. Which is a shame, because they are seeing success rates of 40 - 70%, as opposed to the 27% one year survival rate for TAS-102.
But those are just numbers, and they don’t really count. You’re either here, or you’re not, and nothing else matters. Mary’s here, and the quality of her life is good (except for the nagging cough), and we share laughs and sunsets, and two great kids and scores of wonderful friends. We’re still making plans, and that’s the important thing.
August 28, 2015
Houston on the Seine
Of all the surprises to come out of our visit to Houston, the number of very good French restaurants has to rank among the top. We expected barbecue, Tex-Mex, and Vietnamese restaurants, and there were plenty of them, but we didn’t expect to dine out in bistros, brasseries and cafes.
Of course, we weren’t exactly there as tourists, and starting out talking about dining options is known in journalistic circles as “burying the lede.” So we’ll leave cuisine aside for the moment and get to the heart of the matter.
MD Anderson turned out to be everything everyone said it would. A massive complex packed with patients, doctors and technicians, Anderson is proof that cancer is big, big business. This is not surprising because, despite all the amazing research being done, and breakthroughs announced or on the horizon, cancer remains a growth industry. We have never been thrilled with the idea of chasing a fad, but still, there was something exciting about being part of an enterprise such as MD Anderson.
We arrived in Houston late Tuesday night thanks to a three hour delay in Dallas-Fort Worth. American Airlines was having a really bad hair day, canceling or rescheduling flights and moving them from one gate to another. At the gate next to ours the attendant announced that the flight had been relocated from Gate 27 to Gate 49. All the passengers moved disgruntledly down the hall, including three soldiers dressed in their desert camo. Twenty minutes later they came back.
I asked the soldiers if they really had marched twenty-some gates away only to be sent back to their original gate. Yes, they had. So I told them I hadn’t realized the US Army had taken over American Airlines. Lucky for me, they found this remark as amusing as I expected them to.
But, back to the update. We got to our hotel around 9:30. The restaurant was closed. The last shuttle to Rice Village was about to depart. We caught it, and discovered just about everything there shuts down at 9:00. Luckily there was a Tapas bar open, so we did get to eat.
Next morning we presented ourselves at check in, where Mary got to fill out reams of reports. Then a brief meeting with Dr. Dasari before being shunted off for tests. We were done by 4:00 pm Wednesday, with our next appointment not scheduled until Monday afternoon. Which gave us time to explore.
When the time came we met with Dr. Dasari again. He reviewed Mary’s CT Scan and blood work, which showed her tumors are getting larger and her CEA count continues to rise. No surprises there. After all, that’s why we’re here. Then came the part where he discussed options. The good news, the main news, is that there are options.
One is to take regorafenib, or Stivarga, which is an oral treatment. It was approved by the FDA for treatment of colorectal cancer in 2012. Among its side effects are nausea, fatigue and hand-foot syndrome. These are similar to what Mary experienced while taking Xeloda last summer. The initial dose made it almost impossible for her to walk because, she said, it felt like her feet were one giant blister. The lower dose was more tolerable, but it didn’t work. Needless to say, she wasn’t excited about option number one.
Next on the list: TAS-102. Recently completed Phase III clinical trials show TAS-102 to be effective in extending life, with one-year-survival 50% higher for those taking the drug over those receiving a placebo. That the survival rate was only 27% gives one pause, but then again, Mary’s all about beating the odds.
TAS-102, or tipiracil hydrochloride, is a combination of two agents, trifluridine and tipiracil hydrochloride. It is taken orally, once a day for three weeks, then one week off. The drug was first synthesized over fifty years ago, in the form of trifluridine, but early tests were disappointing. Although the drug was effective in reducing tumors, it had a very short half-life, requiring patients to take a pill every three hours, and it stopped working shortly after the medication ended.
Years later, researchers discovered combining trifluridine with tipiracil hydrochloride served to extend and enhance the drug’s effectiveness, which resulted in the FDA putting the drug on a fast track to approval. The target date is in December of this year. In the interim certain cancer centers have been allowed to conduct supplemental clinical trials.
MD Anderson isn’t one of those centers, but Karmanos Cancer Center, in the Detroit Medical Center is. And this is where Dr. Dasari thinks Mary should go. As he said, “We aren’t competing with each other. We all want to cure cancer.” It certainly will be more convenient to get treatment fifteen minutes away by car rather than six hours away by plane.
Mary has an appointment with Dr. Philip on Monday, at which time we should know if she will be part of the trial. I don’t know why she wouldn’t be, having achieved refractory status--that’s a new term I’ve learned, it means her cancer isn’t responding to any known treatment.
Option 3 is to look into other clinical trials. Again, Dr. Dasari recommended Karmanos of University of Michigan, so we’ll consider that. The final option, which would have to take place at MD Anderson, is immunotherapy. Dr. Dasari is going to test on Mary’s cancer cells for microsatellite instability, or msi, which is, of course, a form of genetic hypermutability which results from impaired DNA mismatch repair, or MMR.
The good news is that immuotherapy has a success rate of 40 - 70% for those with msi. The bad news is only 3 to 5% of patients test positive. But, as our old friend Tom Shumaker used to say, Mary isn’t interested in those percentages. The only ones that really matter are 0 and 100%.
So, the good news is, we like so many others went down to Houston like pilgrims flocking to Lourdes, seeking, if not a cure, at least a way forward. I met a fellow there whose wife is in a clinical trial for breast cancer. He said we were seeking a Silver Bullet. And that’s exactly right. And we found our Silver Bullet. Now we can see whether it can hit the heart of this ghoulish cancer, and whether it can strike it dead.
During our time off in Houston we went shopping, ate French food, spent part of three days at the Houston Museum of Fine Arts. It was interesting to note the similarities between the MFAH and the DIA (Detroit Institute of Art), in terms of the breadth and depth of their collections. It makes sense though, as the impetus for the surge of wealth in Detroit, the auto industry, coincided with the profits of the oilmen who fueled those cars.
We drove to Galveston one afternoon, and went to Needless, where, coincidentally, my sister, Rebecca lived for a few years, to see one of Mary’s oldest childhood friends. We had a good old Texas barbecue and enjoyed their down home hospitality. We had Sunday brunch with my Erin, my niece, and only missed Rebecca because she and her husband are traveling in Costa Rica.
I mention all this only to illustrate what Mary said about how much fun it is to travel together. No matter why we find ourselves wherever we do, we both want to get out and explore. Walk or drive around, look at houses and neighborhoods, hit a few gardens and a museum or two, and get a feel for this new city. Oh, and eat.
So we did that, and we learned a lot, and we enjoyed ourselves, and now we are home, ready to begin the next stage of our journey. It’s good to know we won’t be taking it alone, surrounded as we are with supportive family and friends. Your words of encouragement, your gifts of time and interest, are the dividends Mary has earned for being a good person and a good friend over the course of her life.
Now we’re getting ready to fire that Silver Bullet, and hoping the course of her life extends outward as far as the eye can see.
August 12, 2015
Houston, We Have A Problem
It’s been a month-and-a-half since my last update which ended, as you may recall, with Rick and Louie walking across a fog-shrouded runway in Casablanca, speculating about the breadth and scope of their nascent friendship. A bit of a cliffhanger, that one, promising enlightenment following Mary’s latest CT Scan. A bit of a tease, since more than a month has passed since she had it.
So to bring you up to date. Mary hasn’t had chemo since the end of June, and she feels, all things considered, great. The bad news is the reason she stopped taking chemo. It wasn’t working. All the bad counts keep getting worse, and her tumors are getting bigger. She has developed a painful sounding wracking cough which she insists is allergy related, but deep inside even Mary has to acknowledge it’s due to the tumors in her lungs.
Well, these are the days we didn’t exactly sign up for, but we accept in due course as the terms of the contract are never clearly spelled out when you enter the arrangement called life. Here we face the challenges of the next step in our adventure, this one involving a trip to MD Anderson, to undergo a battery of tests in the hopes that there might be some promising study looking for subjects just like Mary.
We leave next Tuesday, and will be gone until the 26th of August. Mary’s first day schedule has the feel of the first day at college, with orientation and registration, followed by a series of exams. They even call their complex a campus, just in case the analogy wasn’t getting through.
As everybody knows, there is no more desirable place on the planet than Houston in mid-August. Temperatures in the 90’s, with humidity to match. We wanted to stay in the hotel across the street from MD Anderson, connected by an enclosed walkway. Unfortunately, they were fully booked. We’re in a hotel .4 miles away. I told Mary we would drive, “Because I don’t know if you’ll be in any condition to walk that far.” She laughed and said she was sure I was the one who wouldn’t be in any kind of condition.
She was right. I have no doubt upon walking out the door of Houston Hobby Airport I will wilt like Blanche Dubois (means white wood) once Stanley Kowalski unleashed his macho charm.
We have come to this point because there is nothing left in the standard oncological bag of tricks. There are no viable surgeries. There is nothing but hope and resiliency, which Mary has in spades. Me, I just stagger along and try not to wake up in the middle of the night.
One positive, we discovered while filling out the lengthy New Patient Profile online, is the Mary is in remarkably good health for someone who has basically had incurable cancer for five years. We think some researcher might find her status appealing as a subject of one of his or her trials. That’s the hope, anyway.
We’ll let you know how things go. Maybe I’ll even file a report from Houston.
In other news, we experienced the Megastorm of 2015 at Glen Lake on August 2. We saw our 60-foot-tall Blue Spruce snap off and fall to the ground, followed by our screens blowing in and the trees beginning to dance. It was then we decided to run to the basement. (It was then our dog, Mason, decided to play keep away). We thought we were victims until we learned what had happened in Glen Arbor, on the other side of the lake. Nature’s power is awesome.
The next day we went to the vineyard and learned that, though we were spared the winds, we had had 3.5 inches of rain in an hour. That was enough to wash out our roads, but we were spared structural damage. Then we learned that the rain was mixed with hail, and that took out almost our entire grape harvest.
Truly, this has been our Summer of Discontent.
June 22, 2015
A Hill of Beans
Mary had a small crisis at chemo today. Just the usual Oxaliplatin blues, but this time a bit more severe. Tightness in her chest and down her arms drew a cluster of nurses and the PA to her side. Her temperature rose and her blood pressure spiked, and the experts were scurrying around, doing what they could do to stabilize her, which they did. They cut off the oxaliplatin and infused her with meds until she was able to finish the treatment.
What made this one different was the large number of newbies in for their first visit to the chemo lab. I could feel their eyes on us, and their trepidation, their wondering “Is this what it’s like?’
Unlike other influxes of newbies, neither of us felt much like showing them the ropes. We kind of left them hanging, knowing they too would, if they were lucky, become old hands, watching other rookies come in and feel their way.
Looking at them, reading their doubts and their fears, I felt like Rick Blaine at the Cafe Americain, responding to the desperate young Bulgarian bride with a stern, “Everybody has problems, maybe yours will work out.”
The thing is, unlike Bogie, cancer rarely has a change of heart. We keep going through the motions, keeping our appointments, taking those tests, all the while pretty certain cancer isn’t going to come into the casino, put his finger on the roulette wheel, and rescue us from a visit to an oleaginous Captain Renault.
Cancer’s going to kill Major Strasser all right, but he won’t let Ilsa Lund get on that plane with Victor Laszlo. Cancer’s going to get the girl in the end. He always does.
Come to think of it, cancer got Bogie, too.
As I write this the sky pulses with lightning. I watch the flashes through the window wells leading to my basement office, and I think that is highly appropriate. Sometimes it just gets you that way.
But that’s my status report. Though Mary continues to suffer through this particular regimen, as she has through none of the others, losing one and sometimes two days of every fortnight, she is, otherwise continuing to do well. Even though her bad numbers continue to climb, they are, as Dr. Agnone says, climbing more slowly, and her tumors seem to be relatively stable. In a couple of weeks she’ll go in for another CT Scan. While making the arrangements I remarked to myself how effortless it is to deal with hospitals and receptionists now. It used to be such an ordeal, but now I know who to call and what to say and can answer their questions reflexively. We’ve come so far.
We’ll know more after the scan. Then we’ll decide what to do next. There are still some clinical trials out there, and other medical systems to explore, but how long we’ll stick with this particular regimen, I don’t know. I realized the other day that next month will mark a full year that Mary has been receiving chemo without a break.
It’s amazing she can handle it as well as she has, even though each week seems to be worse than the last one When she isn’t flat on her back every other Monday, she remains remarkably busy, hosting dinners and meetings, installing new gardens and tending the established ones, while developing the landscaping at the vineyard property Up North.
Her energy level is amazing, except when it isn’t. She naps frequently, has developed a nagging cough, but happily, she doesn’t have any pain. And so we beat on. Every day a new beginning, another challenge, another milestone. We always try to keep in mind that our problems don’t amount to a hill of beans in this crazy world.
We have a full summer of work ahead of us, between treatments, and look forward to Bryan and Rachel and Bruce and Nancy joining us for the Fourth. Friends from California will be visiting in August, and Malcolm and Caroline (and maybe Nigel and Sabena) will travel from England to help with the harvest in October. Maybe we’ll see you around, either here or there, for a light supper or a lunch date, or, if you find yourself in Leelanau County this summer, for a lakeside visit.
March 17, 2015
A Joyful Noise
It started heading south when Matthew reached the front of the room and turned to face the assembled guests. I stood and gave him a hug. His eyes showed he was moved, and I felt the waterworks begin. I sat down and said to Mary, “That was a mistake.”
Mary always reminds me to take a handkerchief with me when I go to a wedding, because one never knows when a lady might be overcome with emotion. Still wedded to the belief that I am a cold-hearted, stoical rock of a human being, not given to outbursts of emotion, I will, unless reminded, neglect to bring one along.
As I did for Matthew’s wedding. When I remarked on this oversight, Mary mentioned she had a handkerchief, “with flowers on it,” if I wanted to use that. I declined, and wiped the tears away with my hand, and regained my composure before it was time to participate in the parents’ reading.
I wasn’t alone. A great many of the guests were equally tearful, leading me later to wonder, how it could be so joyful when so many tears were being shed. It was such a wonderful time, seeing all of Matt and Nora’s friends, from all over the world, gathering to share in their special day. And so many of our friends were there as well, as well as my parents and my brother and his family.
When our friends thanked us for inviting them I tried to make it clear that I had nothing to do with the invitation list. Violating the basic rule that, once you find yourself in a hole you should stop digging, I continued plugging away at my explanation. It wasn’t that I didn’t want them there, or wouldn’t have invited them if I had had the choice, but to me it seemed it would be more special for them to know they were at the wedding because the bride and groom wanted them there.
Amidst the festivities was Mary, celebrating her fifth year cancer anniversary, a once-unlikely always improbable guest at her own celebration. Not just the mother of the groom, Mary took it upon herself to do all the floral arrangements for the wedding and reception. Granted, she had help, including Emily, whose condo rapidly took on the aroma and appearance of a florist shop--a very small florist shop. A florist shop that had outgrown its space.
Emily’s friend Barb, whose wedding we attended a couple of years ago in St. Paul, was also a great help. They got the arrangements done on Friday, then Mary was up before dawn on Saturday to deliver the arrangements to the Opera House. I kept waiting for her to collapse, to surrender to fatigue. I expected we’d make an early night of it. I certainly didn’t expect to be dancing with her following dinner, nor did I expect her dance card to be filled for the rest of the night.
I also didn’t plan on removing all the directions from the Opera House at the end of the night, but those were the rules, and we complied, Mary plugging away with the rest of us. We returned to the hotel well past midnight, but made it up to greet the newlyweds at brunch the next day.
So here we are, five years and one day from my first entry, and still we take things one day at a time. Still we move forward with a death sentence hanging over us. The other day I decided this is an approximation of a death row inmate -- though, of course, Mary has committed no crime -- the sentence weighing over his head, the execution stayed for years through legal maneuvers, appeals and pleas. Except in our case there is no governor to commute the sentence. We’ve been convicted and she will have to face the masked man on the gallows. We know this. We’ve accepted this. The one thing we don’t know is when this is going to happen.
The amazing thing is, as long as Mary is around there is no one to remind me of her fate. She continues blithely along, refusing to even nod at time’s winged chariot. Life is for the living, and by God, she chooses to be among them, and if I want to tag along, I’m welcome, and so are you.
March 4, 2015
Preaching to the Choir
Last Sunday, as church was letting out, one of the members, having noticed me sitting by myself, approached, and asked with some concern how Mary was doing. “She’s fine,” I replied, pointing at the choir loft where she sat enrobed.
“That’s a wonderful reason to be sitting alone,” she exclaimed. And it was. It certainly beat a number of alternatives for sitting alone, as others are learning now.
A month or so age our friend Tom surrendered after an eighteen year fight with cancer. How courageously he fought was summed up best by an oncologist friend who said Tom’s cancer should have taken him after just six months. So he added more than seventeen years to the balance sheet.
Tom was the one who told me Mary didn’t care about 6% odds, or 20%. “There are only two numbers she cares about,” he told me in no uncertain terms. “0% or 100%.”
One of Tom’s sons mentioned that rule during his funeral. It was an amazing cerfemony, filled with outpourings of love. Everyone there realized no matter how well they knew Tom, with the exception of a lucky few, they only knew a small part of the complete man.
It is rare indeed to hear people say after a funeral that they envied the man whose passing they just commemorated. In death as in life Tom epitomized the iconic words of Gerald and Sara Murphy, that living well is the best revenge.
Cancer never stops giving. It is forever reaching out, welcoming new friends with open arms. Shortly after losing Tom we learned another friend has been diagnosed. His dispensation: another eight years. Well, we shall see.
Mary and I are getting ever more excited as Matthew’s wedding day approaches. Mary is elbow deep in preparations, arranging for the centerpieces, buying flowers for the arrangements. Family and friends will be coming in from all over the country, and even from abroad. It should be a fine celebration of love and joy.
Mary’s in Lansing this week, with Emily, attending the Michigan Grape and Wine Conference. It’s been another disastrous winter, with record low temperatures. It has been so severe we may not have any harvest whatsoever. As a result we’ve put off building the tasting room for another year.
Mary wasn’t thrilled with that idea, “and I think you know why.” I did, and do, but it can’t be helped. I told her she’ll just have to plan on sticking around a little while longer.
After the wedding we have some decisions to make regarding Mary’s treatment. Her current regimen, while not an utter failure, seems to fighting a rear-guard action against the disease. Call it an orderly retreat if you will. While the tumors appear to be growing at an exceedingly slow rate, the number of tumors isn’t increasing.
However, her CEA count soared in the last test. It had been drifting around in the 500 hundred range, up or down 30 or 40 points, which meant it was basically stable. Since a normal CEA count is somewhere around 2 1/2, the 500 range is not great, but it’s far better than a 1,000, which is where it jumped to at the last reading.
We’ll sit down with Dr. Agnone the week after the wedding and discuss our options. We might go back to one of the previous regimens. Sometimes they can regain effectiveness as the cancer continues to change. There remains, too, the exciting world of clinical trials. This would involve some travel, and a new realm of experience.
We’ll keep you informed. In the meantime, we are barreling down the home stretch of the first leg of our journey, with our eyes focused on the future, and with a renewed commitment to live just as well, and as long, as we can.
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%.