I was scheduled for chest surgery in Boston at 7:30 a.m., so we had to leave the house at 4. They needed me there early for prep. They were expecting to find cancer.
My older brother, Hugh, had flown in from Chicago to come along with my wife and me. He figured someone should be with her when she was given the news. I would still be under anesthesia.
I felt the center of my chest. The lump was just off my lower right sternum. It was a third the size of a baseball, and almost as hard. It had been there for almost a year. I had seen three thoracic surgeons, and all agreed I likely had a sarcoma, a malignant growth.
The plan was to confirm this with an open-chest biopsy. It was due to take place at Brigham and Women's Hospital. They would cut into the mass and take samples. The surgeon said it would be a few days before pathology came but there in the operating room, he probably would know what he was looking at.
If it was cancer, they would have to cut me open again. The medical phrase was "wide excision." They would remove not only the tumor, but a substantial section of my chest wall as well, so as to leave "wide margins" around bad cells.
They would remove some or all of my sternum, two to three ribs and a good portion of my pectoral muscle. They could replace the bone with a hard composite, but it would still leave me partly disabled and disfigured. Depending on whether the cancer had spread, there could be a need for chemotherapy or radiation.
My wife was driving, my brother following. It was dark out. We were among few cars on the road. I tried to picture taking this same route in a few weeks, to have the actual cancer surgery. How do you head to the hospital knowing that afterward, you will no longer be whole? It made me wonder about women who face mastectomies. I tried to picture the moment when you leave your house to have part of your body removed. How does anyone do that?
.
It was just past 5 a.m. when we pulled into Brigham and Women's. Soon, I was in pre-op, with an intravenous line in.
I thought I would be physically tense, but mostly, I felt resigned. Then a nurse took my blood pressure. It was 188 over 130. I'd never had a reading nearly that high. She took it again, and it came out the same. The nurse explained that people can be far more stressed than they realize.
My wife and my brother were escorted in. I embraced them both.
Hugh is a businessman and lawyer. His philosophy is that life has problems, but problems can be solved. He told me that surgery can cure this. They could rebuild whatever they took out. I'd be fine in the end.
"You're right," I said. But I didn't believe it. I wouldn't be fine. I would never be able to hit fly balls to my Little League team again, or lift my 9-year-old. This would change the way I saw myself. I was 50 years old and about to confront limitations I had not thought I'd face until I was elderly.
They began my anesthesia. They told me to relax. They rolled my gurney into the operating room. The date was Oct. 6, 2003.
I HAD FIRST NOTICED something wrong the previous October.
I woke up with a biting pain just off the right center of my chest. It felt like a muscle strain. I'd played squash the night before, and figured I'd pulled something.
I did a morning workout, including pushups, which sharpened the pain. A few days later, I played tennis, which made it much worse. I'm not sure why I kept pushing it.
After another week, the pain and swelling were no better, so I went to see an orthopedist. He ordered a CAT scan, to make sure it wasn't a growth. The images from the scan told him it was probably a swollen muscle.
A month later, there was still no change, so I went to see a sports orthodepist. He guessed the problem to be a pectoral tear, but he was miffed. "Of the few hundred things I see," he told me, "this isn't one of them."
He ordered an MRI and even a mammogram. Neither indicated suspicious tissue, just swollen muscle.
After two months, the mass seemed to calm a bit. Tired of being sidelined, I tried some tennis.
It swelled back up.
It had calmed again by a month later, so I tried snow-shoveling. Again it swelled. I found that even small things made it worse.
It went like that for six months.
In May, I got angry at myself, convinced I'd reinjured the muscle so much it had scarred badly and might need surgical repair.
Several orthopedists told me it's a tricky area to fix; to try it could just be meddling. But they also told me they had little experience in this area, there being no such thing as a chest orthopedist.
So, I made an appointment with a Providence cardiac surgeon named Arun Singh. Unlike the orthopedists, he cuts through chest muscles all the time. I took off my shirt in his exam room, feeling optimistic. Singh grew quiet as he felt the swelling. Then he used a word you don't want to hear from a doctor.
"It's impressive," he said. He'd never seen such a swelling. He referred me to a Providence thoracic surgeon, Dr. Thomas Ng -- pronounced "ing" -- who sent me for a new set of CAT scans, this time with dye.
A few days later, there was a message on my machine at home. It was from Ng. He was concerned by the images from the new CAT scans. He wanted me to get a needle biopsy.
The message unnerved me. I'd never before heard a doctor use the phrase, "I'm concerned."
By now, it was June. The needle biopsy was scheduled at Rhode Island Hospital, in Providence.
I had thought it would be like drawing blood, but the mass was so fibrous, they had to use a needle gun to drive through it. Each time they pulled the trigger, it was like being kicked in the chest. Afterward, as I lay on the gurney, I was told the tiny samples they'd just taken did not appear normal. But I would have to wait for the pathology report to know what it was.
A few days later, I went to see Ng in the Medical Office Building across from Rhode Island Hospital. I tried to make some banter, but he was extremely serious. He put my films on the light board.
The swelling, Ng said, was worse than in the previous scan six months before in November. That worried him.
Then, he pointed to a spot on one of my lungs that had not been there before. That worried him, too.
He used the word "sarcoma" -- a cancerous tumor growing off the soft tissue, bone or cartilage.
He told me the solution was to remove my sternum, several ribs and pectoral muscle.
I tried to talk him into it being a likely muscle injury, but his response was solemn:
"I'm really worried."
I left the building and dialed my wife. It was hard to keep from crying. I went back to my office and just sat at my desk. After a few hours, I got an unexpected message to call back Ng.
The needle biopsy results had come back early. They were negative.
The samples were only scar tissue. That convinced me that the swelling was what I had hoped -- a muscle tear that was taking forever to heal.
But Ng was stern. This was still a problematic injury. No tennis or sports of any kind, he said -- nothing for three months.
It was late June, the summer just beginning.
I WROTE a column about the needle biopsy, thinking that the ordeal was over. I heard from many readers who shared stories of cancer. I felt lucky to have had only a scare.
The column brought an e-mail from a doctor in Rhode Island. He said that negative needle biopsy results weren't reliable. He suggested I get an open-chest biopsy, to test the whole mass.
I chose to ignore the e-mail.
Hadn't the needle biopsy results proved it was a muscle injury? And hadn't Ng told me to rest? I vowed to do that. No sports, no lifting anything heavy. My goal was to have this injury behind me by September.
Two weeks later, I got another phone call from Ng.
He asked if the lump still there.
Yes, why?
He'd submitted my case to a group of other doctors at Rhode Island Hospital. None were satisfied with the needle biopsy, which sampled only a fraction of the mass. They were worried by my MRIs and CAT scans. They suspected cancer and recommended an open chest biopsy, to have the whole mass removed and tested.
I hesitated.
"I thought the needle biopsy showed it was scar tissue?"
Ng told me that cancer can cause scar tissue.
But the area often swells with activity, I said -- does cancer do that?
It can, said Ng -- a sarcoma can infiltrate and weaken muscle, making it behave like an injury. He added: "Anything can happen in medicine."
He wanted to remove the mass the following week. It was just when my family had planned a summer vacation.
I told him I'd call him back.
I felt my chest. It was still badly swollen. If I waited a few months, I told myself, it would heal, or at least shrink. If they cut out a chunk of the muscle now, at its most swollen, it could compromise me, long-term.
I called back and said I wanted to delay. Could I schedule an appointment in two months, early September, and see where things stood then?
"I can't force you to do this," Ng said, "but it's against my advice to put it off. If this is a cancer, it shouldn't wait."
I felt torn, even sick to my stomach. But I stuck with the September appointment.
"OK, Mark."
At times, I asked myself whether it was smart to delay. Wouldn't each hour increase the risk of it spreading? But I wasn't ready to face it. Couldn't I at least hold onto this final summer before having my life changed? I felt it was a safe bet. I'd done enough reading to know that certain sarcomas grow slowly, and it seemed clear this was one of them.
My wife, parents and my brothers said they understood.
But I didn't tell any of them about the spot on one of my lungs. If I did, I knew they'd pressure me into surgery. A contained cancerous mass was one thing, a disease that was metastasizing was a different situation.
It doesn't seem to make sense that I would hide such a thing with so much at stake.
But that's what I did.
MY SONS ASKED me to toss around the football; I said no. Let's play that wrestling game, Dad; no. In 15 years of parenting, I'd never said no to such things. But I was ready to do whatever it took to make this heal. That meant zero physical activity.
I tried biking, but found that didn't work either -- leaning on handlebars strains your pectorals. I was realizing how central your chest is to almost everything you do.
I started opening doors with my left hand, and steering the car that way, too.
Mostly, I did nothing. It got harder and harder. I began to feel on the edge of life.
Midsummer, we decided to build a tree house. Normally, I'd have pounded most nails and measured most cuts. This time, I had no choice but to have my children do everything. Their work was imprecise, and took much longer. But they loved swinging a hammer. I told my wife that perhaps it wasn't so bad to be forced to step back.
In other areas, I still felt distant from my kids. Friends told me there are better ways to be a dad than to throw a ball. I knew they were right, but I spent most of my time regretting what I couldn't do.
I even grew embarrassed about my condition. Toss around the football? I can't, Sport, Dad's chest still hurts; maybe you can ask Mom. I didn't want to have to give that answer, or explain again that Daddy couldn't lift this suitcase, or those boxes. So I pushed away.
AFTER A MONTH, I swear the swelling seemed smaller.
In September, more hopeful, I went to see Ng.
I was escorted into an exam room. I took my shirt off.
I waited for Ng to say it was going in the right direction.
But his expression was solemn.
It had been 10 months, he said, and the mass was still there. If it was an injury, it should have healed by now. Instead, he said, it felt more rigid and worrisome than before.
He put up the images from the June CAT scans and pointed out that the swelling was also extending down into my chest. Muscle injuries don't do that.
Could it be anything besides cancer?
Yes. He said it could be an infection -- but that would be extremely rare, and I'd had no signs, such as fever. It could also be a benign growth. But the majority of chest masses like this were malignant.
There was another change he didn't like: there was now discoloration on the skin above the mass. His implication was that this could be a sign of spreading cancer.
The conversation left me stripped of hope.
I asked how limited I would be, without a sternum, ribs and right pectoral muscle.
Ng did not sugarcoat things. The pectoral was a big muscle. I would still be able to use my right arm, but motion would be somewhat limited, and there would be many athletic things I could not do.
Afterward, outside, I paused to call my wife.
"He's still convinced it's cancer," I said. More than ever, really. I told her about the skin discoloration. For some reason, that seemed to seal it in my mind.
She was quiet a moment. "We'll just get through it," she said.
I hung up, and for long seconds, stared at a big construction project going on across the street. I called my parents, and then some of my four brothers. Then I called a friend. That's what I did, called people. I'm not even sure why, but that's what I felt I had to do.
I HAD CONFIDENCE in Ng, but I needed to hear how other surgeons might approach it.
I drove to Boston to see Dr. Cameron Wright, one of the main thoracic surgeons at Massachusetts General Hospital. I sat down in his office, which overlooked the Charles River. He spent 20 minutes chatting about my work and family. I liked Wright immediately.
I began to tell him about the swelling. He didn't seem alarmed. I felt a weight lift. Maybe it wasn't cancer after all.
"Well," he finally said, "let's take a look."
As he studied my CAT scans, he began to look grave. Then he examined me physically. He was silent as he felt the mass in my chest.
I sat back down across from his desk.
I looked at his face. It reminded me of Ng's expression.
"This is not inconsistent with a sarcoma," said Wright.
He had noticed that the latest CAT scans showed a new spot on one lung. He also pointed out where the mass was growing down.
Couldn't that mean an injured muscle was swelling in both directions?
Not possible, said Wright; the downward swelling was beneath the ribs and cartilage.
And if this proved to be cancer?
The solution, he said, would be very serious -- the removal of part of my sternum, two ribs and much of the pectoral muscle. His voice was almost apologetic. He understood that to me, this wasn't a mechanical fix as much as mutilation.
I focused on him saying "part" of the sternum instead of "all."
Wright told me I was comparatively young, with a family. The important thing was to be able to see my children grow up. I needed to deal with this.
He suggested one more set of MRIs. He would use those to guide him on an "incisional" biopsy. Instead of cutting out the whole mass, his approach would be to cut into it and take samples that way.
It was Tuesday, Sept. 16.
THE NEW MRIs -- my first films since June -- were scheduled at Mass. General for Monday, Sept. 29, at 10 p.m.
I drove up to Boston alone. My wife wanted to come, but I urged her to stay home with our daughter, 15, and our sons, 12 and 9. I'd decided not to tell them yet; I wanted them to think Dad was getting routine treatments for a muscle injury.
I parked in the Mass. General garage and walked to the hospital. Both the streets and lobby were weirdly empty.
Soon, I was inside the MRI machine, my nose just inches from the chamber's ceiling. As it began to take pictures, the machine generated a buzzing sound as loud as a fire alarm. Usually, I don't get claustrophobic, but I began to picture myself trapped in an underground pipe. After 90 seconds or so, I had to shut my eyes. I was in there for 45 minutes.
I didn't finish and leave the hospital until 11:30 p.m. Outside, it was cold and windy, and too late to call anyone.
A part of me got to thinking, I should be writing columns about this; sometimes, that can help me cope. Instead, over the past months, I'd been picking lighthearted subjects. There was no sign in my work that this was one of the lowest periods of my life. I couldn't do it. I even hid this from most of my colleagues. I'm not sure why.
THE NEXT MORNING, with little sleep, I was in Boston again for a third opinion. My older brother, Hugh, knew of someone in Chicago who had searched the country for a chest-cancer surgeon and settled on a Brigham doctor named David Sugarbaker. I later learned that patients routinely come from around the world to see him.
He's a big man in his 50s who from behind, looks like a linebacker. He studied my films and had the same reaction as Wright and Ng. It looked like a sarcoma, he said -- probably a chondrosarcoma, which grows out of the cartilage. It had to be biopsied. He would do it the way Wright had proposed -- cutting into it, instead of cutting out the whole mass. If it was cancer, he, too, would remove part of the sternum, part of the pectoral muscle and several ribs.
Losing so much of my chest would limit me a little, he said, but he didn't treat it as catastrophic. I did. Still, I liked his attitude.
Later, I called Sugarbaker's Chicago patient, an architect who had had mesothelioma, an often-terminal lung cancer. The architect told me Sugarbaker took the creative approach of removing not just his lung, but the lining around it, half his diaphragm and other chest tissue. It had been five years, and he was doing fine -- an exceptional outcome.
I would have been comfortable picking Ng for the surgery; he did something none of my other doctors did: he chased me. I was a resistant patient, but he kept tracking me down, until I faced this.
I'd have been comfortable with Wright, too. He saw me not as a patient, but a person.
In the end, though, I chose Sugarbaker. He struck me as having the most confidence, and the most experience. I scheduled the biopsy with him in two weeks -- mid-October.
A FEW DAYS later, I was at work when Mass. General's Wright called. He had just gotten the films from my MRIs.
My chest lesion, said Wright, had grown bigger. He mentioned its size in millimeters.
"Bad things do happen to good people," Wright told me. "Whichever way you go, don't put your head in the sand on this one."
He said that at this point, he would be inclined to remove not two ribs but three.
That shocked me. It convinced me I'd waited so long that the cancer was indeed spreading. Had I acted earlier, it may have meant two ribs, perhaps even one. What had I done?
Suddenly, after a season of delaying, I wanted the biopsy immediately.
I called Sugarbaker's scheduling aide and begged to get in sooner.
They had me come up to Brigham for pre-op tests, including a close-up CAT scan of the swollen area. A half-hour later, when I was ready to check out of his office, an aide called me back in for a second CAT scan.
I asked why.
He said that after looking at the first scan, Sugarbaker's office had asked for a wider chest view.
I decided that meant they were worried the cancer had metastasized -- that there were more spots like the one on the lung. The technician said he hadn't heard that, but I was convinced it was true.
I went to the corridor to call my wife.
As soon as I heard her voice, I had to pause to keep from breaking down. I had to do that a half dozen times during the conversation. I turned my face against the wall so no one would see.
It was a Wednesday. They found a slot for me the following Monday -- Oct. 6, Columbus Day. It was almost precisely a year after I first noticed something was wrong.
I was at last going to have my first of what would likely be two surgeries.
Soon, finally, I would know.
I SHARED MY condition with a few colleagues, one of whom mentioned a friend in California who'd had chest cancer. The friend's name was Jon Peterson. He's 51, my age, and works as a national park ranger. It turned out he had precisely what I'd been diagnosed with -- a sarcoma to the right of the sternum.
A few weeks after they confirmed his mass was cancerous, Peterson told me, they removed his entire sternum, 80 percent of his right pectoral muscle, four ribs and some of his lung.
They covered the space with marlex mesh, mixed with special resin that hardened like a surfboard. The procedure was called plastic skeleton replacement. His recovery, he said, was rough, and six months later, a CAT scan found a cancerous spot on one of his lungs, which had to be removed from the back with more surgery.
Peterson said he can now kayak and swim at a moderate pace, but riding a bike is tough because leaning over causes him chest compression.
He was upbeat. He said he had no interest in cosmetic surgery to refill the sizable chest hollow from the pectoral removal; appearance wasn't important to him. I knew it would be to me.
My father reminded me that his own brother had been hurt during World War II in a way that compromised his right side. He taught himself to use his left arm instead -- even to write left-handed. I experimented the next time I took out our dogs, trying to throw a stick left-handed. I tried it a dozen times. It felt foreign and impossibly awkward.
I SUPPOSE I've never been the kind to reach out when burdened. I keep my needs in. People usually sense this, and respect it. But something happens in illness. They don't let you pull away.
My rabbi is Les Gutterman. He called to say he'd heard I was going through something. Soon after, he had me sitting with him on the back deck of his Providence home.
I knew that part of his job was to counsel those facing medical procedures. I asked how other people handle fear of cancer. Do they accept that it's inevitable, so that bad news won't be a shock? Or do they keep hoping they'll be cleared? Often, Rabbi Gutterman said, it's both. Some days, it helps to deny it, some days to accept it. He said I'd probably go back and forth. The main thing, he said, is to not try to do it alone.
THERE ARE SOME guys I play squash with whom I hadn't seen in almost a year, being sidelined. Up to now, I'd told them by e-mail that I had a sports injury. I wasn't ready to share the truth. But finally, I did tell one of them. Pretty soon, I got a dozen e-mails from other players, some of whom I barely knew, and I found myself buoyed by each one.
The same thing happened with old college friends. I told one -- and pretty soon, I'd heard from a dozen. I began to send almost daily e-mail updates to each group. It's not as if they were able to offer tangible solace. But it lifted the weight a little bit, to sit down at a keyboard and simply share what I faced.
THE DAY BEFORE the biopsy, when I went to pick up my kids at Sunday school, my 9-year-old's teacher came up to ask if I was OK.
Yes, why?
Because she had her class list things they would want to pray for, and my young son said he'd pray for me because I was having chest surgery.
I hadn't told him yet, but obviously, he had heard it around the edges. Worse, he'd somehow gotten the message that it wasn't to be talked about. So he was mostly alone with it.
Later that day, I sat my children down and explained that Daddy was going to have an operation to see if I had cancer. If I did, they would take out some of my ribs, and it might mean I couldn't do certain athletic things afterwards, but I'd be OK. I said that maybe I'd learn to throw a ball left-handed. They didn't say much.
MY MOTHER had wanted to fly east from Chicago for the biopsy. I told her to hold off. The main cancer operation would probably be in two weeks or so. No reason to go back and forth twice, in so short a time.
So now, at Brigham and Women's, it was just my brother, my wife and myself.
I looked back at them as a nurse rolled my gurney toward the operating room.
I tried to tell myself it was the right decision, to have put this off for so many months -- at least now, I'd come to accept that I had cancer. But I hadn't.
I remember the bright lights of the operating room. And then I drifted off.
I OPENED MY eyes. It was three hours later. They had finished the surgery and I was coming out of anesthesia. I was still groggy.
My wife was on one side of me, my brother on the other.
Sugarbaker was next to them in his scrubs.
He said they had found something unexpected.
They had found an infected abscess between my sternum and ribs. It was bigger than a golf ball.
He said that sarcomas don't cause that kind of thing.
He said he had taken dozens of tissue samples from the swollen area for pathology, but at this point, he was guessing that my year-long ordeal had been caused not by cancer, but by a bizarre infection.
As he had told my brother and wife earlier: "Chondro-sarcs usually shout at you." This didn't look like one.
He was 80-percent sure I did not have cancer.
I thanked him. And thanked him again. Then I caught my brother's eye and briefly laughed. Then I could not stop crying.
IT TOOK FIVE days for the pathology report to confirm that there was no cancer. As for the spot on my lung, it was probably a tiny scarred nodule; it happens with age. Since it had not gotten bigger, Sugarbaker said, there was no reason to be alarmed by it.
He declared me "an interesting patient."
I later told the other orthopedists and thoracic surgeons, and they, too, said it was a unique case.
The bacteria proved to be pseudomonas, often found on the skin of burn victims. It is also found in the lungs of cystic fibrosis patients, where it can grow resistant to antibiotics and contribute to their deaths.
The infectious-disease doctors were stumped as to how I might have contracted the infection, since I had not suffered any recent wound that might have let the bacteria in. However, I have had several bruising chest collisions in my life -- one on a toboggan, the other while boating -- that broke and separated ribs in that same area.
The theory now is that those injuries left untidy tissue by the sternum where a few normal pseudonomas bacteria that should have been killed by my immune system began to grow. As they did, my body's reaction was to wall them off, but every time I jarred the area with activity, the capsule broke down, allowing the infection to roil the muscles around it. The doctors are stumped as to why it never caused fever or signs of systemic infection.
The bacteria did, however, gravitate to the rib, causing osteomyelitis -- a bone infection. During the biopsy, Sugarbaker did his best to debride the bone.
The infectious-disease people ordered an intravenous line anchored in my arm, and with the help of a visiting nurse, had me administer an hour of antibiotics every day for two weeks.
Now, more than two months later, I am still on a backup oral antibiotic. I am soon due to have an MRI to check for any lingering signs of infection. To the touch, the swelling does seem to be gone, but the area is still a bit tender. I've been told that bone infections can be very stubborn.
I'D COME HOME from the hospital expecting to be instantly reembracing life. I had dodged cancer. It would change the way I lived.
It did not happen.
After work, I found myself greeting my family at home, then sneaking to the bedroom, where I would lay in the dark until called for dinner. Sometimes, I snuck back up there, midevening.
I did that for two weeks. At work, I felt lackluster.
It's better now, but I still sometimes feel like a car trying to start on a cold morning. I'm angry at myself over it. Every day, people find they have cancer. I was one of the lucky ones. How could I possibly have gotten depressed after such good news?
I have only theories.
Perhaps it's that after a year of fighting, no matter what the outcome, you tend to collapse for a while when it's over.
Perhaps the past year has made me face the fragileness of the body.
Perhaps, embarrassingly, there is even a sense of loss at no longer receiving so much attention and concern.
Slowly, though, I'm feeling better.
In some ways, I'm feeling the way I used to; In a few ways, I'm not.
Each morning, I stare at the mirror and see the scar and know that something has changed.
Mark Patinkin can be reached at mpatinkin@projo.com
