LONG ROAD, MANY TWISTS AND TURNS

By Dick Wright

Several weeks before my wife Anne would succumb to the ravages of cancer, she suggested that I "should write a story about our experiences because it might be helpful for other couples". It was the first and only time that she would ask that I write anything. She had always been blase about my literary efforts. Recognizing the urgency in her voice, I acted on her wishes and submitted copy to The Toronto Star. Unfortunately, The Star only used excerpts from my story in an article carrying the byline of a staff writer. Disappointed, I just filed away the text with some other unpublished material. In memory of Anne and as a tribute to her spirit and strength over an extremely difficult nine-year struggle with cancer, I hereby fulfill her wishes with the following revised and updated version of the original story that had her blessing before she passed away.

W. ANNE WRIGHT, 1940-2000

...mother, banker, friend, free spirit

For several months I had been noticing something different about my wife Anne -- subtle things like uncharacteristic evasiveness, a change in her posture, the way she would position herself in bed at night, her declining energy level and a far away look in her eyes. There were also husband and wife issues developing between us that I could not explain. I was reluctant to ask questions, because I was afraid of what the answers might be. The answer, however, came in bolt of lightening fashion one Monday morning in May, 1991, as we were getting dressed for work.

Generally the first one dressed and downstairs preparing coffee, Anne was dragging herself at a snail's pace. When I had to help her from the bathroom into the bedroom, I knew we had a problem. "That's it," I said firmly. "You are not going to work this morning and I'm going to call the doctor." Anne collapsed into a chair and with a weak voice said: "Okay, but maybe you should have a look at something before we go."

"Do you think you can handle it?" she asked as she shifted her brassier to reveal to me for the first time an ugly red mass about the size of a baseball right in the middle of her chest. I felt faint and gasped the obvious question: "My God, how long have you had it?"

"I'm embarrassed to admit it, but I first noticed something about a year ago. I didn't say anything because I kept hoping it would go away. I wanted to spare you the anguish because all I can think of is what we went through with my mother when she died of cancer," she confessed.

I could not believe what I was seeing and hearing. I actually pinched myself just in case I was dreaming. We sat on the edge of the bed, minds racing, saying nothing, crying. Anne finally broke the silence. "You know, I actually feel like a great weight has been lifted. I don't have to keep this a secret any more...No more hiding it...No more pretending."

The worry and stress that she kept bottled up all those months was beyond comprehension. I more or less understood why she decided to ignore early detection signs, but a wave of guilt came over me because rather than confide in me, she chose to shut me out. How insensitive of me not to have put two and two together.

Four hours later, seated in his office, our family doctor gave Anne a hug and confirmed our worst fears. It was the first time that we gave in to the nasty C-word. Our lives would never be the same again. For the next nine-plus years we would literally and figuratively be consumed by the most insidious of diseases -- cancer.

At 51 years of age, Anne was supposed to be in the prime of her life. She had a fulfilling career in banking and had successfully raised two fine daughters. Now this. Our world as we knew it had just crumbled around us and we were about to embark on a journey that would test our commitment, our strength and our resolve.

Anne was immediately referred to an oncologist at Peel Memorial Hospital in Brampton. After preliminary tests and a hastily arranged mammogram, it was determined that her cancer had advanced to the inoperable stage, leaving chemotherapy as the only treatment option. The cancer was starting to engulf her left breast and was also showing up in her lungs. Her long-term prognosis was not good, but the oncologist told her that he could "buy" her at least a year of good quality time.

For the next five months she would endure bi-weekly chemotherapy drips as a hospital outpatient. From the very first treatment she was extremely sick. She would come home from the hospital completely drained and sleep for most of the next 24 hours. It would take five or six days for her to regain her strength and then it would be time for another treatment. It was a cruel, vicious cycle.

After the third treatment her beautiful dark brown hair started to fall out by the handful. Without question, this was completely devastating for her. Within two weeks she was almost completely bald and a wig was in order, a gift from her sister Roberta. Anne would divulge later that this was the beginning of the end of her dignity.

The worst part of our trips to the clinic would be the long waits for treatment, sometimes upward of four hours. I could not help but marvel at the level of patience displayed by those waiting along with us. Most had come to terms with their cancer and you could sense a quiet resolve. Competent, sensitive and friendly clinic staff members also contributed to an overall relaxed atmosphere in the clinic and helped make a stressful experience at least tolerable.

Most days the waiting room was filled to overflowing -- children, teenagers, adults of all ages, people in wheelchairs, people on oxygen ventilators -- all bravely hoping for the best. We would get to know some of the regulars on a first name basis and then after a while we would not see them again. We couldn't help but wonder...

A mystery paralysis, just to complicate matters 

Several days after her fourth chemo treatment Anne experienced a strange paralysis on the right side of her face, affecting her ability to speak and eventually working its way down to her shoulder, arm and hand. We were at a loss to know what to do, but after about 10 minutes the "freeze up", as she called it, stopped as suddenly as it had begun. Over the course of the next 48 hours she would have 10 similar attacks of the paralysis on the right side of her body.

Needless to say, her oncologist was consulted but he was unable to offer an explanation for the unusual attacks, except to say that he was convinced that they were not as a result of the chemotherapy. He immediately ordered x-rays, ultrasound and a spinal tap and arranged for Anne to see a neurologist.

The neurologist was equally puzzled and and promptly arranged for an MRI scan at Toronto General Hospital. The paralysing attacks continued and chemotherapy treatment was suspended pending reports on the various tests and examinations. We were on pins and needles.

After two unsettled weeks the unexplained hit-and-run paralysis began to subside. Coincidentally, and much to his credit, a conscientious x-ray technician at Peel Memorial remembered an article he had seen in a medical journal reporting on a case in the U.S. similar to Anne's. He contacted the American doctor and obtained further information. A re-examination of Anne's x-rays revealed a culprit blood clot in the front portion of her brain.

Much to our relief, follow up x-rays revealed that the blood clot had dissipated and we were told that chances of it ever happening again were extremely remote. Anne waited another three weeks before she was physically and mentally ready to resume chemotherapy. It took most of 1992 for her to start feeling reasonably well again, but she was never able to return to work and was declared permanently disabled. Little by little she was able to do some light housekeeping and eventually join friends for lunch outings and shopping. Her tumor even appeared to have shrunk a bit. In spite of everything, we had a lot for which to be thankful.

Her smile and appearance were "deceiving"

While she feared death, Anne became an advocate of the power of positive thinking. She shrugged off sympathy and patronization. She had a cheerful word for everyone, which was more often than not a cover for how sick she really was. People would remark on how good she looked, to which she would laughingly respond: "Well, looks can be deceiving." On check up visits, her doctors would marvel at how well she had done. "We don't know what you're doing, but just keep doing it," they would say. She was dubbed "the miracle lady".

Out of necessity we adjusted our lifestyle considerably and established certain priorities. I began taking on part-time freelance work that enabled me to spend more time at home with Anne. Little by little, I became chief cook and bottle washer. The role of primary caregiver was soon to follow.

In some convoluted way, the hiatus enabled us to divert attention to our oldest daughter, Debbie, who was diagnosed with cancer of the cervix, just a year after giving birth to her second child. Debbie underwent a radical hysterectomy and after an anxious few months her recovery was uncomplicated and complete.

We began to notice disturbing changes in Anne's tumor in the spring of 1995 and it became necessary for us to apply bandages in order to contain drainage. Her breathing was heavy again and she had to rely more and more on her "puffers". Fatigue set in once more and some days she just stayed in bed around the clock.

As if it wasn't enough that we had Anne's deteriorating condition to worry about, my 92-year-old mother's health was also rapidly failing and it became necessary for her to be moved into a nursing home. I felt as though I was the rope in a tug of war that no one could win. Four months after entering the nursing home and five days after stubbornly insisting that she be returned to her home in Dresden, my mother passed away. As an only child and sole survivor, it fell on me to settle affairs of the estate and to sell the family home, leaving Anne behind in Brampton for several hours or a day at a time. I couldn't go through that again for love nor money.

Funny, isn't it, how just when you think things can't get any worse, they always seem to? But on the other hand, we all have a reserve of strength that we can call on in times of difficulty. If we hold on to our spirituality we can rise to any occasion. That is the miracle of humankind.

Following a heart-to-heart talk with her oncologist, and convinced that there was no other course open to her, Anne hesitantly agreed to another eight rounds of chemotherapy. She was told that this would be a new form of chemo with few side affects. What really turned the trick for her was the oncologist's assurance that she would not lose her hair again. Well, famous last words!...Her hair began falling out after the second treatment and the wig that she hoped to never see again was resurrected. Losing a head of hair, not once but twice in a four-year period, was a cruel twist of fate.

Her reaction to the new chemo was more severe than before. Once tipping the scales at a "pleasing" 160, her weight plummeted to 90 pounds. The chemo was doing to her what up to then the cancer had been unable to do -- kill her. After the fifth treatment the oncologist agreed that she might not survive a sixth. "We just can't do this to you any more," he sighed.

Community Care services helped greatly

To complicate matters even further, the tumor was now the size of a football and subject to massive hemorrhaging. Her breathing became so labored that fluid had to be removed from her lungs, by no means a pleasant procedure. Through the Community Care Access Centre of Peel we were granted daily home care nursing assistance. Many of Anne's extremely expensive drugs and all tumor dressing materials were also provided under the program, affording us a quality of care that would otherwise have been beyond the reach of our fast-dwindling resources. Similarly, she was tested and qualified for a Canada Department of Health program that provided a crucial in-home oxygen service.

By now, Anne was spending much of her time in bed and because of the tumor bleeding problem and other personal needs, she could no longer be left alone. I had no choice but to phase myself out of a number of personal involvements and to completely stop working so that I could devote myself fully to the role of caregiver. We could not afford to lose my income but sometimes in life you have to make trade offs. If only Revenue Canada would recognize the financial implications of such trade offs, but that's another story.

Meal preparation, house cleaning, laundry and grocery shopping were easy chores compared to the cram course I had to take in learning about catheters and bed pans, patient hygiene, equipment sterilization, changing a bed with a person still in it, oxygen management, duragesic patch application, tumor dressings and, most importantly, how to stay calm in an emergency situation.

Initially I wanted to do everything for Anne myself and looked on any offer of assistance as an encroachment on our life and my responsibility. I was told that this is a natural reaction for most care givers in the early stages. I changed my do-it-all attitude, however, when I realized that if I wore myself out we most assuredly would both go down the tubes. They don't have courses in care giving for husbands who suddenly find themselves in such unfamiliar territory. Perhaps they should.

We managed to get through Christmas "97 and New Year's Day, but she was so uncomfortable that it became obvious to both of us that hospital care was again immanent. The first night back in hospital Anne was hooked up to a morphine drip without verification as to what her tolerance level might be or what other pain killer drugs she had been taking. She spent the next 48 hours totally out of it and as a precautionary measure was moved to palliative care where she was under 24-hour watch. We almost lost her because of that oversight but I chose not to press the issue with hospital authorities. I just wanted Anne to get better.

It was ironic that at home Anne had carefully monitored her medication, making a written note of every pill and the time she had taken it. She arrived at a very fine line, choosing to put up with more pain than the average person so that she could keep a clear mind and remain in control of her faculties. She hated the "spaced out" feeling.

It took the better part of a week for her to stabilize. After a series of tests it was decided that her tumor should be given priority. Thus began a two-week endurance test of 10 daily ambulance trips to the Ontario Cancer Centre at Sunnybrook Hospital in Toronto for palliative radiation treatments.

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Believe it or not, Anne shared one ambulance trip with a second patient who had been picked up at a private residence and was destined for another hospital in Toronto. Much to our horror, we learned the next day that the other party was a carrier of the highly contagious and deadly MRSA bacteria (Methicllin Resistant Staphylococcus Aureus). Anne was immediately quarantined for 48 hours and subjected to a series of precautionary tests which, luckily for all concerned, came back negative. Given Anne's rock bottom immune system, this was just another in a long list of minor miracles for her.

Surprisingly and miraculously, Anne suffered no ill effects from the exhausting two-week ordeal, other than a sore throat from the carefully aimed radiation target so dangerously close to vital organs. She improved enough over the course of the next month that she could return home once again. I hurriedly arranged for a special bed for her and converted our dining room into a glorified hospital room, complete with all her familiar things including family photographs, privacy curtains, a television and comfortable chairs for visitors. The contents of a china cabinet were removed and replaced with medical supplies.

Unfortunately, on her fifth night at home she attempted to make her way to the bathroom alone in the dark. She somehow got tangled up in her oxygen tubing and fell, twisting her already weakened spine. Luckily, she did not break any bones but, sadly, she would never walk again.

Several days later she experienced excruciating stomach pain and was rushed to Mississauga Hospital as a redirect patient. After a series of tests and injections the hospital's head surgeon was sitting in front of us explaining that x-rays had shown air in Anne's bowel, probably the result of a perforation caused by the assortment of heavy cancer related drugs she had been
given in the previous five or six years.

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Photo: Three-in-one birthday celebrations a tradition

for Dick, Anne and her father Preston

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"There are rare cases such as yours where symptoms for an ulcer don't show up until it perforates, penetrating the wall or membrane of the stomach. It's a life-threatening situation, one that generally requires immediate surgery and a colostomy." he explained matter-of-factly. "With your cancer and weakened condition, however, you would never survive the surgery and I'd advise against it. We'll put you on a strong dose of antibiotics to slow down the poison that will gradually spread through your system, but you can expect the worst in about 72 hours. So if you have arrangements to make..."

"Am I hearing correctly?" I asked, to which Anne added: "Are you saying that I'm going to die?"

The words "yes, I'm afraid so" still ring in my ears. While Anne accepted her death forecast with relative resignation, I went into a state of shock and premature grief that lasted for days. I resolved to remain at her side in hospital to the bitter end.

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In a telephone conversation with our family doctor the next morning, he expressed dismay over what had happened. "...But think of it this way, Dick, the poor dear girl has suffered more than enough. This may well be an out for her. Hang tough!"

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To make my extended stay as comfortable as possible, a very attentive nurse provided me with a pillow, extra sheets and a pad for the recliner chair in Anne's room that would be my bed for the next 28 days. Our assigned doctor was extremely caring and interested in Anne's case, visiting her daily and making sure she was properly attended to as the antibiotics and increased dosage of morphine took effect. She would slip in and out of consciousness with periods of delirium, but generally she was responsive and knew what was happening.

She defied the odds once again

At approximately the 60-hour mark, with our two daughters at her side, I thought Anne might be slipping away and each one of us, in our own way, said our goodbyes. Suddenly, however, I detected a change in her breathing and her body seemed to relax. She squeezed my hand and reached out to the two girls on either side of her, saying in a weak voice: "It's okay."

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A glimmer of hope. Another miracle in the making? Seventy-two hours came and went. Then another 48 hours and Anne seemed to be slightly improved -- stronger, more alert. "Well, since you're still here, maybe we should take some more x-rays and see what's happening," the doctor said as he shook his head in wonder.

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The smile on his face as he entered the room the next afternoon spoke volumes. "It's nothing short of a miracle," were the first words out of his mouth. "The x-rays are clear, showing that there has been a spontaneous healing of the perforation. It's virtually unheard of, but the antibiotics obviously did their job. You are really one strong lady," he added.

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He went on to say that they did find a small ulcer near the bend in her stomach and that he would be prescribing medication that she probably would have to take for the rest of her life. "Otherwise, we'll just start working on getting you strong enough so that you can go home again in a couple of weeks. I'm just so happy for you."

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The depths of grief and despair one minute and sheer euphoria the next. I hardly knew how to react. I remember uttering a "thank you", but beyond that I was rendered speechless. Anne's reaction was typically off-handed: "I knew all along that I wasn't going to die." She was no doubt telling the truth, but why did she keep us guessing for so long?

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Somehow, several nurses found out that Anne's birthday was February 28 and that mine was the next day (March 1). All the night nurses in palliative care got together and brought us a cake, complete with candles, and sang happy birthday. They knew that we were celebrating more than just our birthdays and it was their way of sharing their feelings with us. I hope they understood how much we appreciated their thoughtfulness.

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On the 26th day of her stay, it was suggested that there was nothing more that could be done for Anne in hospital and she could be released the following day if she felt comfortable with the idea.

A palliative care patient in two different hospitals in a three-month period and she was still alive to talk about it? Unheard of...Once again Anne had beaten the odds.

Health care system worked for us

When I think about our exposure to three hospitals, it all seems like an unbelievable dream. We experienced the good and the bad in our over-extended health care system, but on balance there were more pluses than minuses and we were thankful for that. Maybe we were lucky. And when today I hear about waiting periods for MRIs and radiation and cancer patients travelling to various parts of the province and into the U.S. for treatment, I have nothing but sympathy.

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Realistically, however, it is not a perfect world and there are limits to the health care services our tax dollars can provide. The Canada Health Act aside, we have to take responsibility for our own health and that of our loved ones. Ultimately, when illness comes, it behooves us to be prepared to be flexible in our attitude and expectations, knowing that life is only as good as we make it.

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Unbelievable as it may seem, Anne survived another three years of her physical and emotional roller coaster ride. Totally invalided and with the creepy crawly cancer working its way through her body, she would have two good days and then two bad ones. Sometimes we laughed and sometimes we would cry. Sometimes we would disagree and then we would agree. Sometimes we would agree to disagree. Sometimes we felt like giving up, then we would try all the harder to carry on.

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We were so engrossed in today that we would forget about yesterday. We faced tomorrow when it came. We marvelled at each new sunrise and we embraced the day.

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The thread of living one day at a time is woven throughout the fabric of the ages. It is a lesson we all learn with difficulty, but it is one that held the key to a peaceful existence for the Wrights as they faced an uncertain future. We came to the understanding that we were unduly hard on ourselves when we attempted to bear tomorrow's burdens with today's strength.

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In quiet moments I studied Anne as she slept with life-sustaining oxygen tubes hissing up her nostrils. I often wished that I could crawl into her frail head to find out what it was really like to just lay there, day in and day out, totally dependent on others for every need -- what it was really like to have accepted the fact that right now is about as good as it is ever going to get.

More than once she opened her eyes and caught me watching her, prompting a groggy scolding: "Don't you know you can wake a person up by staring at them?" She always had a knack for disarming me. I would later test her theory one more time but, sadly, it didn't work.

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While she fought against constant stomach and bowel distress and the tumor which had gradually spread across her entire chest and started to hemorrhage again (blood sometimes spurting to the ceiling and requiring me to apply finger tip pressure to the wound opening for upward of an hour), Anne continued to be an astute manager of her pain, preferring to stay with two Duragesic (fentanyl) 100 mcg/h patches supplemented sparingly with Statex (morphine sulfate) for breakthrough relief. To stay as alert as possible through the day, she resisted other sedatives until ready to settle down for the night. Her blood count dipped to dangerously low levels and she received transfusions on two occasions.

She was the only person I know who when asked if she was feeling pain would say "yes, but it is a good pain because it lets me know that I am still alive."

"I don't know why I'm still here," she would often add, "God must have a reason."

One thing for certain, we would not have made it as far as we did without the prayers and support of family and friends. We were also the benefactors of a wonderful home care network that included nurses who tended to Anne for an hour each day, a doctor who visited periodically and volunteers who sat with Anne while I looked after grocery shopping and other necessary chores outside the home. Our two daughters, a number of close friends and a sister and father in London, were just a phone call away whenever we needed them.

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There was comfort and security for Anne in the warmth and tranquility of our home. From her bed in our former dining room, she had her finger on the pulse of the household. She scrutinized just about every move I made, particularly in the kitchen. While our roles were somewhat reversed, I needed no reminder of who was still "the boss".

Joy came in the form of grandchildren, three of which Anne originally thought she would never see. She enjoyed visitors but as time wore on she was reluctant to have anyone see her. "I just look so terrible and it takes so much out of me trying to have a conversation," she would explain. "I'm tired of living and I'm tired of dying."

I knew exactly what she meant.

We were both paying a toll. I began to experience varying degrees of melancholy. I would cry at sad things and it would be the same with happy things -- music, children, acts of kindness, you name it and I would well up. On several occasions I broke down, collapsing to the floor and weeping uncontrollably for extended periods. Our doctor prescribed the anti-depressant Celexa and it helped in leveling out my emotions. It still does.

I do not recall Anne crying even once in the last year of her life. I can't help but think that she needed a different form of release -- a more permanent one. Previously a sensitive, feeling person, it was almost as if she did not want to waste her precious time and energy on trivial earthly matters and just closed her mind to most of it. At one point she did hint that she could not allow herself to cry because it just took too much out of her and if she ever started she would never stop. That, in my book, is what you call control. Typically Anne.

We purposely did not make long-range plans toward the end, but we marked one date on the calendar, July 16, the day we would celebrate our 40th wedding anniversary. Anne and I made a wager. I bet that she would make it through to the 16th and beyond. She bet that she would not.

Unable to hang on any longer, Anne slipped away quietly and mercifully on the evening of July 6th., and won the bet by a mere 10 days.

I don't remember if we actually put a dollar amount on the wager. It was a life or death kind of thing and I guess I'll always be indebted to her, never knowing how much I owe.

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Sincere gratitude to Rosanne for her love, support and understanding as I worked my way through this project. 

*Sept. 14, 2014: By means of update, the second Mrs. Wright is now in her fourth year of a debilitating health disorder and I once again find myself in the role of primary care-giver...Who said that lightening never strikes twice?

Life is not always fair!

**APROPOS UPDATE:  Rosanne Wright passed away June 24, 2018, in her 71st year. We were married September 15, 2002.

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