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Summer 1999 was a whirlwind for Randy and Linda Gauger. In June they flew to Littleton, Colorado, to house-sit for a couple whose daughter had been killed in the recent Columbine massacre; in July they returned home to the Bruderhof in Farmington, Pennsylvania, where their oldest son, Matt, lived. In August they were in the air once again, this time heading for Danthonia, the community's new branch in Australia.
Expecting to be away for a minimum of several months — Randy was to oversee the legal affairs of the new venture — they asked Jonathan, a fellow Bruderhof member and family physician, if he would mind looking out for Matt while they were away. (Nick, their second child, had left Farmington after high school and was starting his third year of college in Pittsburgh.)
After his parents left, Matt began eating breakfasts with Jonathan and his wife, and he was soon stopping by to read bedtime stories to their children as well. During the day he worked in the IS (information services) department at Community Playthings, the Bruderhof's main business. Life was unremarkable — until a memorable Saturday in late November. As Jonathan later recounted:
We were finishing up the breakfast dishes on the 20th when Matt told me that he had noticed lumps in his groin two days earlier. He wondered whether they could ever indicate a serious problem. I said no, because they are almost always associated with infections, and infections can be taken care of with antibiotics. But I told him that if he was having pain, heshould keep me in touch. The same evening the phone rang at six o'clock; it was Matt, and he asked me to bring a hefty dose of Motrin for him when I came to the community dining room that night. He met me at the door and snatched the Motrin from my hands. He was very uncomfortable. At ten o'clock he came by our apartment and begged to be examined, so I took him to my office and did so. He said he had a great deal of pain in his left groin and was sure it was a hernia. On examination I found several tender, marble-sized lymph nodes in the left groin. I recommended a high dose of Motrin, but did not start an antibiotic as there was no sign of infection on the left leg or foot.
On Sunday Matt felt fairly well. On Monday, however, while driving home alone from Pittsburgh, where he had dropped off a friend at the airport, he was in such pain that he debated calling home and asking for someone to come pick him up. At home, he went straight to the doctor's office. A second exam showed nothing new, but Jonathan started him on an antibiotic anyway. That night at the members' meeting — a daily gathering for dialogue and worship — Jonathan noticed that Matt sat in the back row, slouching to keep his groin comfortable.
Tuesday afternoon Matt's pain worsened, and he complained of backache. At nine in the evening, Jonathan found him lying on the living room couch. Matt begged to be re-examined. Once again they went to the office, and once again no significant problem was found. Jonathan offered Ultram, a stronger painkiller, but Matt still called him after midnight, asking if it was okay to up the frequency of his dosage.
On Wednesday Matt was seen by a specialist at the local hospital. Nothing new was found, but the doctor felt he should continue the antibiotic. Matt was reassured and spoke of canceling the follow-up appointment.
At story time that night, Jonathan's four-year-old Alan was hurt when Matt wouldn't let him sit on his lap. At bedtime, however, he prayed that Matt would soon feel better. It was then that it first crossed Jonathan's mind that Matt's problem might be something serious.
On Thursday night Matt was so uncomfortable that Jonathan had to give him sleeping pills at one a.m.; by breakfast the next day, he was complaining of severe back pain. By Friday evening he was in such agony that Jonathan stopped the Ultram and put him on codeine, but when he asked Matt if he'd called his parents about the last four days, Matt shot back, "Why should I tell them anything? They'll only worry about me." Jonathan worried, though. Twelve years earlier, while treating a cancer patient in New York, he'd written in his journal: "She began her week on Tylenol, and ended it on morphine." Matt, too, had started the week the same way, and he was ending it on narcotics.
Back in Matt's room, a handful of friends was trying to cheer Matt up with a little good-natured ribbing. "Matt," Tim intoned, "I've been asked to break the news to you. You have ... cancer." Everyone laughed, but Matt winged a book and pair of socks at Tim and told everyone to get the hell out of his room.
By mid-morning the next day, Matt was in the local hospital for a CT scan of his abdomen and pelvis. To Jonathan's shock, the scan revealed enlarged lymph nodes deep in the abdomen. Infection was still a possibility, the radiologist assured him, but there were two other possibilities as well: metastatic testicular carcinoma or a lymphoma. Jonathan broke the news to Matt, and on the way home they discussed a plan of action: continue the painkillers and antibiotics, but if there's no improvement in a day or two, biopsy a node from the left groin. The hours that followed are burned into Jonathan's memory:
Matt moped around our house, lying on the couch or on my son's bed, crouching in funny positions, pacing the floor, trying to get comfortable. I offered to do something more — to take him back to the hospital, to do something — but he was adamant that we had to "give it some time" before proceeding further.
Matt joined our family for dinner. Around eleven I went to his room to check on him and found that he had a fever. This worried me, because nocturnal fevers are sometimes associated with malignancy, so I decided then and there that Matt needed to be under closer observation. I brought him to our apartment and settled him in an extra room.
Around midnight he called through our bedroom door to say that he wanted to take his narcotic again. I reminded him that the usual prescription was "every four hours," and that he had just had a tablet one hour go, but I let him take another. An hour later he was banging on the door again. This time I gave him a shot of Demerol. It did nothing to relieve his condition. By three a.m. — after another dose of Demerol — he was inconsolable, alternately pacing the living room and curling up on the floor, weeping. I called the hospital, and we were soon in the car, heading down the highway to the emergency room ...
Halfway around the globe, Randy and Linda were sitting at the phone, trying to get through to the Bruderhof in Pennsylvania. Someone had relayed a message that Matt was sick, but Linda was sure it was a mistake. "Matt never got sick," she recalled. "Nick was the one always coming down with something strange. I almost wanted it to be Nick, because I had been with him when he had pain, or when he was nervous and scared. I know how he reacts and handles things. But how would Matt deal with it? He had no experience with pain." Little did she know what he was going through that very moment — one wave of pain after another, so brutal and searing that before long his morphine injections were abandoned in favor of a continuous intravenous drip.
On Sunday Tim visited Matt with Brian, another friend, and they decided to stay at the hospital overnight. The experience was pure hell, but Tim felt he was doing penance for his joke two days before:
I'll tell you, it was the most agonizing hours I've ever spent with anyone. Matt was getting morphine shots when I arrived, but he was in such pain that they didn't help. Every half hour he'd start writhing around in bed. He was fidgeting with his sheets, biting his lips, and drawing deep breaths. Then he'd get up, because he couldn't sit any more, and pace wildly or crawl around on the floor. He was bellowing, "Oh God, please help me!"
Sometimes his pain was so bad that he would bend over double and claw at the walls. I've never seen anyone in such agony. He'd try one position after the next — squatting on the floor, sitting on the heater, lying on the bed. Every position caused excruciating pain.
At one point Matt was lying in bed, and he looked at me and said, "You know, Tim, it would really suck if this was cancer, wouldn't it?" I said, "Yeah, it would." Later a football game came on. Matt said, "Just so you guys know, I am not the entertainment. Watch the TV."
But they couldn't. Brian remembers:
For six long hours we sat next to Matt in relative silence. There's nothing worse than sitting there helplessly, watching someone's face contort with pain and knowing you can't do a thing to alleviate it. We put our arms around him and rubbed his back and told him to hang in there. We wiped his face and forehead and adjusted his pillow. We gave him water to drink and tried to tidy up the room. When a nurse brought him prune juice (he had trouble going to the bathroom) he tried to laugh, but the next moment he was balling up his sheet and biting at it in pain.
During one of his worst episodes — he was lying on the floor, gasping for breath — his parents called in from Australia, and he was saying, "No, I'm all right; I'm fine." That's when I started crying.
On Monday, Matt's second day in the hospital, he underwent a bone marrow aspiration. During the procedure, a hollow, eighth-inch bit is drilled into the patient's hip bone — first on one side of the base of the spine, and then on the other. Following this, suction is applied in order to extract marrow for testing. Jonathan calls that moment the mule kick — the point at which the patient, who is normally howling in pain despite local anesthesia, will suddenly "go through the ceiling." Jonathan remembered later:
Matt was very dubious about the whole thing, if only because it would require lying flat on his belly for a long time, a position he had not been able to attain in more than a week. As it was, the 45-minute procedure was sheer hell. Matt was kicking and screaming. I told him to squeeze my fingers, and squeeze them he did! My fingers ached for days afterward, and my knuckles were purple and bruised. Matt's pillowcase was so saturated with tears that I could have literally wrung it out. And I cannot say how many tears I shed, to see him in this condition. If anyone thinks he can tolerate pain, he should try a bone marrow aspiration.
Jonathan drove in to see Matt multiple times over the next few days:
One time I dropped by and found Frank and another guy pacing the room with Matt. He would yell, and they would yell with him; he would cry and they would cry. He would grasp their hands, embrace them in bear hugs and squeeze them till they could hardly breathe. Then he'd collapse on the bed and fall asleep.
Another time when I came in, Frank was sitting on the floor. His face was beet red from hours of crying and rubbing his eyes. Matt was dozing peacefully, but Frank said that every time his fever spiked, his pain would drive him up the wall, and he'd be completely out of control for the next hour or so. Frank had been through two of these episodes when I found him, and he was an emotional wreck.
In one sense, the young men who endured Matt's first days of agony with him were only observers; in another, they were — as one of them put it later — being "laid low" along with him. Suddenly, life had been stripped to the bare essentials, to a battle for survival. "It totally threw me," recalls Frank. "Matt had been living a normal life just days before all this! Now he was hooked up to monitors and IV lines and needed help getting in and out of a bathroom."
Jonathan noted the same thing, but what really struck him was the change in Matt's demeanor. Just one week ago he had been a capable, happy-go-lucky adult. Now he was more like a frightened, clinging child:
It was striking how quickly his confidence was toppled by his pain. He willingly let me — no, begged me — pull him up in bed, smooth out his sheets, change his pajamas, bathe him, rub his legs, scratch his back, hold a glass of water to his mouth, run a damp washcloth between his toes, and dry his feet with a towel.
When I accompanied him to the OR for a lymph node excision, he was quite frightened, as he had never undergone an operation before. He asked a hundred questions over the next hour and begged me not to leave his side. I promised him I wouldn't. I also reminded him of a conversation we had had the night before: that no matter how things turned out, we had to pray that it would be according to God's will.
On Monday Matt asked me point blank whether I thought he had cancer. I told him that it was indeed looking more and more like it. He sat silent, aghast, and then looked me straight in the eye, tears streaming down his cheeks: "Do you think I will die before New Year's?" "Only God knows," I told him.
It was at this point that I decided to tell Matt that the community had bought tickets for his parents, and that they were probably on their way from Sydney as we spoke. "That's bad!" he grimaced. "It is," I agreed. "But you are in a bad way, and we have to face it and fight it." He then said resignedly that if his parents were coming home all the way from Australia, it must be clear that he had cancer. All I could do was remind him that there was no firm diagnosis, and that there was nothing I knew that he didn't.
The next days were a blur. Tuesday morning the pathology reports had come in: Matt had lymphoma, and it appeared to be an anaplastic, large-cell type. Further, the cancer seemed to have spread from the abdomen to the chest. At noon Matt was transferred by ambulance to the university hospital in nearby Morgantown, West Virginia. Later that afternoon an oncologist came by. His report confirmed everyone's worst fears: Matt had anaplastic, large-cell lymphoma. Chemo could help him, but it would have to be started the very next day.
Meanwhile, Randy and Linda were on the way home, flying first from rural New South Wales to Sydney, then on to Los Angeles — a flight of twenty-one hours — then to New York, and finally to Morgantown. As Randy remembers the grueling trip:
We had a five-hour layover in Sydney and were already totally exhausted. We hadn't slept for two nights. At first the airline couldn't find our tickets, but after a few calls back and forth, they located them. An agent noticed how distraught we were and asked why we were going home. When she found out, she arranged for us to travel business class.
We knew that Matt was having tests but had not heard the outcome, so I called home. I broke down on the phone when I heard the diagnosis, and when I returned to Linda, I was barely able to talk. I said something like, "It's cancer and it's bad." We both just sat there and cried. We were unable to talk for a long time. Later we got up and walked aimlessly around the airport, tears falling from our faces. Linda finally asked me if we would get home in time to see Matt. I told her I didn't know. "Numb" is the only way I can describe my feelings at the time.
Once in the air, we talked very little. We mostly held hands, and cried. I do remember talking about how good it was that Matt was in the arms of our church, with people who knew him — with brothers and sisters. That was a tremendous comfort. We also read off and on from a little book we'd brought along, Now Is Eternity. We needed to hold on to something other than our fear.
Back at the hospital, Matt's fever was spiking again. More blood was drawn, and additional morphine was administered, along with intravenous steroids. Matt mumbled, "Sure hope Dad and Mom don't see me like this." But a few minutes later they did. In Linda's words:
Matt was in bed when we walked in, an IV pump in his arm. We hugged and cried and told him how glad we were to be there with him, and he said he was glad we'd come. There was little else to say. Later we went down the street to a motel room the community had booked for us to try to get some rest. We couldn't. Everywhere we looked, there were flowers, food, and greetings from brothers and sisters at home. We stayed up for two hours reading them, and the love they expressed overwhelmed us. But Matt's situation kept tugging at us too. Why was this happening? We still couldn't really believe it or take it in. Our son — our son — had cancer.