"In these past months I've often wondered how it would feel to be the well one watching the other tread through an illness." Shea, Suzanne Strempek. Songs from a Lead-Lined Room: Notes - High and Low - from My Journey Through Breast Cancer and Radiation. Beacon Press. Boston 2002.

I was on my way to pick up my cousin Emma. The odometer on my 1987 GMC Jimmy turned 300,000 miles when I passed Jordan's Store in East Sebago early in the morning on March 21st. The Saint John Regional Hospital in New Brunswick, Canada, was 400 miles and 7 1/2 hours north. There were about 6 inches of new snow on the ground from last night's storm, and the roads were slick. This was a long trip for a car with so many miles on it, but it was in good shape and up to it.

The Jimmy became mine as a used car in 1990, when it had only 38,000 miles on the odometer. Since then it has been a dependable, steady vehicle. It has faithfully hauled us and our stuff all over, including back and forth across the country. Along the way, it has had some serious problems that have required "major surgery". When an engine bearing went, Phil at P&M Auto here in Sebago took the engine apart and rebuilt it with all new components. An AAMCO shop in Sacramento rebuilt the transmission several years ago when it starting missing gears. The old car has recovered nicely from all these repairs, and gets regular "check ups" and preventative maintenance. It runs like a new car and I'd like to think it has many more miles ahead of it.

Unfortunately, changing the spark plugs on your car is not like treating a major illness in your body. While the medical profession may seem like mechanics, with their sometimes "trial and error" approach to treatment of what ails you, you only have one body for them to work on. If the treatment fails you can't trade the old body in on a new model. Bodies don't come with a warranty.

Of all the illnesses that attack our bodies, cancer is one of the scariest. Just the word cancer evokes strong emotions. Cancer attacks both the body and soul, treatment is traumatic, and a "cure" is never assured.

When my cousin Emma was diagnosed with breast cancer I learned that the trauma of cancer doesn't just affect the patient, but also family and friends.

Emma and I outside her home in New Denmark

Emma lives alone in a small town in New Brunswick, Canada. She has no immediate family. She is also my second cousin and I am her closest relation.

She and I are related through our common great-grandparents, Lars and Dorothe Marie Petersen. They and their children emigrated from Denmark in 1883 to New Denmark, a Danish immigrant colony in the wilds of New Brunswick. There the Petersen family settled into a new life as Canadians.

The family connection was broken for nearly half a century, when my grandmother Laurina moved to Maine and married my grandfather. My mother and father reconnected with the Canadian relations in 1949, and we have kept in touch since. Emma and another second cousin Madeline are all that remain of my immediate family in New Denmark.

Emma has not had an easy life. She has been the care-giver for her family for the last 40 or more years. She took care of her grandfather Hans Peter in his old age until his death in 1961. She then looked after her mother Clara (died 1987) and her two uncles James (died 1983) and Wilfred (died 1981). For the last 15 years she has lived alone. She has never married, and has devoted her life to her family in lieu of a job or career or travel. She doesn't own a car, and has never driven. Emma is not to be pitied, however, because she has proven herself to be very tough. Everyone in New Denmark knows Emma, and she has no end of friends and neighbors who drive her places and look out for her. She has learned to deal with what life dishes out to her with humour and resilience.

Emma and I keep in touch by phone. In our frequent phone calls I usually do the listening and Emma does the talking, but that is fine. When the phone rings at 10:00 or 10:30 at night, I can almost guarantee that it will be Emma, with some news from New Denmark for me. Her call last spring, however, was different.

"I've been to the doctors in Great Falls" Emma began. "They have found some lumps, and are going to do some tests"

"What do you think it might be?" I asked.

"Maybe cancer. I'll know next week when I go back in for my tests."

I thought that a week to wait until they did the biopsy and testing meant that the likelihood of cancer was low. I was wrong. About a week later, Emma called again. "It is cancer" she said. "They are going to operate ." she said.

"Are you worried?" I asked. She said no. Emma talked about her new surgeon in Great Falls, Dr. Rajendra Chowdhry. She talked at length about the nurses at the hospital, and how Dr. Chowdhry had joked with her going into the operating room.

He told her that she had "backbone and courage", but he was perceptive enough to see beneath her brave face to her vulnerability. Dr. Chowdhry was there by her side when she went under anesthesia. After the operation, he was there holding her hand in recovery when she came out of anesthesia. It was a wonderful gesture on his part.

Much later, Emma confided to me that she had been scared going into the operation. She felt very alone. I would have been surprised if she hadn't felt this way. Ultimately, no matter how much support there is from family and friends, the patient must bear this burden alone.

Recovery from surgery was fairly rapid, and she regained the use of her right arm over the next few weeks. Emma can raise it over her head, but the strength has not returned even ten months after her surgery. A Red Cross worker comes to her home weekly to help out with the cleaning, and provide a little companionship for Emma.

Her chemotherapy was a mixed series of out-patience visits over the summer and fall to the hospitals at Great Falls and Plaster Rock, plus a week in residence at the Saint John Regional Hospital. Emma took the chemo treatments in her stride and put on a brave face. She insisted that the chemo treatments "weren't too bad" and joked about losing her hair. In our talks she went on about her new wigs, and how she got along with her doctors.

Emma models one of her new wigs

I didn't know if this was denial by Emma or not, but I worried about her. I contacted my stepsister Barbara in Lowell, Mass. Barbara was also in treatment for breast cancer, and was nearing the end of her radiation treatments. "Could you call Emma and just talk to her about your treatments?" I asked. "I'm worried about her, and how she is dealing with all this." Barbara had gone through an emotional roller coaster ride, and had a good feel for what Emma was going through. Barbara called Emma but met a stoic facade. They talked several times over the next few months, which probably was good for Emma. Talked about everything under the sun, except her cancer and its treatment.

Penny and I went up to New Denmark to visit Emma just before Christmas, when she was nearly through her chemotherapy. She was in good spirits, and she took us around to visit friends in the little community. Emma showed us her wigs, and talked about her doctors, but said little about the progress of her treatment.

Emma called in January. "They are going to send me to the Regional Hospital at Saint John for a month of radiation treatments."

"Then the chemo went well and your white blood count is OK to begin the radiation?" I asked.

"Yes, I think so. Can you bring me down to Saint John?"

"I'd be happy to. Just let me know when you need to be there, and I'll drive you." "Is there someone to look after your place while you are gone?" I asked.

"A neighbor will look in and water my plants. The Mounted Police out of Plaster Rock will keep an eye on my place." she said. "I've given my cat away,...." and she went on talking about how she had pared down her life to focus on her treatment. The Friday before she left for Saint John, the group that gathers weekly for a community sing-a-long all contributed to a "Sunshine Basket" of gifts and goodies for her. She was the center of attention.

The drive to Saint John is about four hours from New Denmark, and we drove it at the end of February. On the long drive south we followed the Saint John River, retracing in reverse the route that Lars and his family had taken on that spring day more than a century before. Emma talked the whole way. She was clearly looking forward to meeting the nurses and doctors at the Regional Hospital again, and being the center of attention there as she had been the summer before. This time she would stay for a month, and would received 16 radiation treatments and additional tests.

The Saint John Regional Hospital

We arrived in Saint John to grey skies, with gusting winds and a cold driving rain. The snow was nearly gone, and the day couldn't have been more foreboding. The Regional Hospital is huge. It perches on a granite ledge overlooking Great Bay. The parking lot was full of cars from New Brunswick, Nova Scotia, Prince Edward Island, and Newfoundland - and one car from Maine.

Emma checked herself in, and I hauled her bags up to her room on the 5th floor, South Wing. It was called a "Hospice Ward", and nearly all the patients staying there were at the hospital for cancer treatment of one sort or another. Emma was assigned the same room and the same bed, next to the window, that she had when she was here for a week in July last year for treatments.

Emma was in her glory! She recognized several nurses and one of the doctors, and they remembered her. She met a former police officer from Great Falls that she knew. She remembered where the cafeteria is, and the hospital schedule. We unpacked her bags, and she settled herself in for her month's stay.

I walked with Emma down to the Oncology Department, a long trip through winding hospital corridors. About the time I thought we should be arriving in Halifax, we got to the place where Emma would be receiving her radiation treatments. There was a waiting room full of people, most of them in bathrobes and looking a little apprehensive. There were a lot of wigged heads in the room, and a few hairless ones. No one was talking or joking. One or two were reading, but most were just staring into space. Everyone seemed lost in their own universe, and the whole atmosphere was depressing.

We logged Emma in and sat down with the group of somber patients. After a short wait, Emma was called by one of the nurses and taken into the back. She was not due to get any radiation treatments that day, but did need to have her body "painted".

While Emma was gone, I left the waiting area and went back to the information kiosk in the cavernous hospital entry hall. They recommended a local florist, and I called and arranged a bouquet of flowers each week of Emma's stay. By the time I got back to Oncology, I only had a few minutes to wait before Emma returned. I noticed that she had what looked like purple magic marker on her shoulder. Emma later showed me some of the purple markings they had drawn on her shoulder and chest.

"These marks are to guide the technician when he gives me the radiation treatments" she said. "He is supposed to point his machine here, to get at the cancer cells. I am not supposed to wash them off until my treatments are finished."

I stayed for a couple of days, just to make sure Emma was settled in OK. Emma and I went to the New Brunswick Museum and drove around the old town. We tried out a couple of restaurants, and I found out that Emma would eat Chinese food three times a day if she could.

She kept up a brave front the whole time, as if she were in Saint John as a tourist instead of a patient. I noticed, however, that it was hard to get her to focus on things. When we drove to the docks where our grandparents and great-grandparents had arrived more than a hundred years ago from Denmark, it made an impression on me. She hardly seemed to notice. That was not really too surprising. I was sure that the hospital ordeal ahead of her was foremost in her mind, even if she wasn't going to admit it to me.

I left her at her room on the ward and drove home. Over the next several weeks, Emma and I kept in touch. The flowers were a pleasant surprise, and she was delighted that a new bouquet came every week. She was full of tales to tell about the hospital staff and her fellow patients.

"And how are the treatments going?" I asked every time.

She insisted that she was suffering no ill effects from her radiation treatments. I wondered how she was spending her time, since each treatment took less than an hour. Once, she said, the weather had been good and she had joined one of the nurses and another patient on a walk outside, around the hospital. But, she said that the treatments made her very tired. "I sleep" she said, "and watch TV with the other patients on the ward, and knit."

Emma was proud of the fact that she was one of the few patients from her ward who was allowed to go to their Oncology appointments unescorted. She was also intimidated, however, by the big and noisy metal radiation machine that moved around her body from front to back during treatments. The staff and technicians in Oncology were pleasant, but the machine was frightening each time they turned it on for another treatment.

Finally she called and let me know that she was nearing the end of her treatments. There were a couple of tests that needed to be run, but she had a date when it all would be over and she could leave the hospital. I told her that I'd be there to pick her up and drive her home.

I went back to Saint John on March 21 to drive Emma home to New Denmark. A late winter snowstorm had fallen the night before, and all the trees were cloaked in white. It was like driving through a Christmas Card all the way to the Canadian border. Arriving at the Regional Hospital, I loaded her bags into the Jimmy and we drove north through the snow.

"Are you feeling OK?" I asked. "Any side effects from the radiation?"

"No, I am fine. I was just a little sleepy sometimes. It was much easier than the chemo. Sometimes the chemo treatments were painful and I'd get sick."

Emma back home, her treatments complete and her hair growing back!

On the long drive up the Saint John river valley, Emma shared with me that she had dreaded the chemo treatments. They had left her weak and ill, and got worse as she worked her way through the course of treatments. They had exhausted her. But she also was grateful that they were behind her. Besides, she said "My hair will grow back." I was encouraged that now that the treatments were behind her, she has begun to feel better about sharing her feelings - not for me, but to herself.

Dr. Chowdhry was right. Emma does have "backbone and courage", and that has carried her a long way through her trials. I was happy that she was now coming to terms with her cancer and the emotional as well as physical impacts of it, because the toughest trials were still ahead of her, the period that Suzanne Shea called the "now what" or the "big meadow" period.

"I muddled through the next few months in what I've since heard is the "now what?" period. You are done with surgery, treatment, the daily checks by health professionals. Now what? Nobody knows. You are turned out into the big meadow of the world to fend for yourself." Shea, Suzanne Strempek. Songs from a Lead-Lined Room: Notes - High and Low - from My Journey Through Breast Cancer and Radiation. Beacon Press. Boston 2002.

Emma has learned from her follow-up tests that the cancer appears to be completely gone. This is wonderful news, and something that we all had hoped and prayed for. However, Emma still has some major emotional challenges ahead of her. Now that her treatments are over, she will be seeing her doctor only infrequently, for semi-annual checkups. I suggested that she get involved with one of the cancer survivor support groups in the area that are available.

"Yes" she said. Dr. Chowdhry had told her about these groups, but Emma was not interested.

"You could offer some very positive message of your own experiences" I said, "and you could be of help to the others in the group." Emma said that she would think about it, but it didn't sound like she was very enthusiastic about the idea. I doubted that she would.

I probably shouldn't worry so much. Emma's approach to coping with her cancer mirrors her stoic attitude towards life in general. She is not ignoring the situation, only dealing with it in her own way. She has her own "support group" in the friends and neighbors of her little community, many of whom have had their own bouts with cancer.

And as for being "turned out into the big meadow of the world" to fend for herself, that probably will not be a problem either. I received a call from Emma about six weeks after our drive from Saint John to New Denmark. It was typical "Emma".

"I stopped wearing my wig on May 1" she said. "My hair is about a half-inch long, and I told Dr. Chowdhry that I was going to give my wig to him. He needed it more than I did, and he could cover up his bald spot with it."

I started this piece out talking about how different auto repairs and "people repairs" are. Maybe they aren't all that different, cars and people. Like my old Jimmy, Emma has had her share of "repairs", and like my Jimmy, she has proven to be steady and dependable, even now as she lives out her "extended" life.

I worried about Emma on my long drive home alone. I shouldn't have. Everyone deals with their cancer in their own way, and Emma has shown me she has things well in hand. She has led a fairly unremarkable life. Her bout with cancer, however, has been a remarkable challenge, and she has met it and survived in her own way. I think she'll be OK.

Helpful information on Breast Cancer Treatment can be found in these books: Kaye, Ronnie. Spinning Straw into Gold - your emotional recovery from breast cancer. Simon & Schuster. NY 1991 Porter, Margit Esser. Hope is Contagious. The breast cancer treatment survival handbook. Simon & Schuster. NY 1997 Shea, Suzanne Strempek. Songs from a Lead-Lined Room: Notes - High and Low - from My Journey Through Breast Cancer and Radiation. Beacon Press. Boston 2002.

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Last updated May 17, 2002

Copyright © 2002, Allen Crabtree