Ron Ryckman's Story

Personal History:

My name is Ron Ryckman; I am a male of Icelandic, Dutch, and Anglo-Saxon ancestry, born in 1935. I live with my wife, Agnes in Winnipeg, Manitoba, Canada. Winnipeg is 60 miles north of the Canada/USA border with North Dakota and at the horizontal centre of Canada. I was born in Winnipeg and have lived in Manitoba all my life. The only cancer in my large family affected an aunt on my Mother's side who survived breast cancer, and an aunt and an uncle on my father's side who both died of lung cancer. They were both heavy smokers. There is great longevity in my family, most members surviving from 75 - 100 years.

Lifestyle:

I have suffered from a hiatus hernia for over 20 years. It was diagnosed in 1975; many nights have been spent sitting upright in a chair. Although I had found that the symptoms almost disappeared if I brought my weight down to 210 pounds, it seemed natural for me to be 225 - 235. At 6 foot 2 inches, this weight was at least 30 pounds too much. By 1993, the reflux was severe enough that acid had been entering the bronchial tubes and causing chronic bronchitis and pneumonia with blood streaked sputum. Neither I nor the doctors were alert enough to link the lung problems with the reflux.

My employment was with the Province of Manitoba Electric Utility. I had been a hydro-electric generating station operator who moved into water management and generation planning. At age 55, with 37 years service, I was eligible for a pension (60% of my last year's income after deductions and income tax).

My bronchitis and pneumonia was chronic and very troubling. I took an early retirement in 1990 thinking my lung problems would limit my years of good health. Shortly after, it was linked with the reflux, and with tagamet (cimetidine) and copious amounts Maalox, it was brought under some measure of control.

In 1993 as a result of intense chest and back pain, it was found that my esophagus was severely ulcerated. Biopsies of seven ulcers indicated no cancer. The doctor issued me prilosec (omeprazole) and sent me home with no follow up. When I asked him if I was at risk for cancer of the esophagus, his reply was "What are the chances of getting cancer anywhere in the body?". I left his office relieved and assured. I have since learned that this condition put me at 30 to 50 times greater risk for esophageal cancer. In the Eastern countries where this cancer is more common, they have screening techniques which discover this cancer while it is still treatable.

I quit smoking in 1980 after 25 years of heavy smoking; I was an occasional social drinker. Nine years of my employment was in a high voltage environment from 1954 to 1962. The remaining years were in an office building containing asbestos as insulation, which was removed in 1978. My work environment, I believe was not a factor.

The five years of retirement before diagnosis was spent doing the things I liked to do. Reading, researching, lecturing in the winter, and travel, kayaking, swimming etc in the summer. My wife Agnes and I spent much time with our large family, (10 children and 8 grandchildren - an extended family). Before I was diagnosed I had just eliminated my heavy commitments to the fraternity of Freemasonry, and we were making plans for more travel with our motor home. The plans were to spend the 6 winter months of 95/96 in Southern Texas and Mexico.

Diagnosis:

The ulcers and the hiatus hernia continued to cause me occasional pain, reflux and discomfort. When I experienced occasional difficulty eating in June of 1995, I wasn't alarmed. The literature lists difficulty swallowing as a symptom of esophageal cancer. I would never have described my problem that way. In a man of my size, the esophagus is probably about 14 inches long. My difficulty was a long way past the point of swallowing. I began taking smaller mouthfuls, chewing more, and taking sips of liquid with each mouthful.

In early September, Agnes and I, accompanied by my parents (age 85 and 82) travelled by motorhome to Fort St. John, British Columbia (mile 50 on the Alaska Highway), to visit my youngest daughter, her husband and our newest grandson.

While away the difficulty eating was more severe. There seemed to be a buildup of gas in the stomach causing pain. The only relief was through burping. Occasionally burping was most difficult. When a burp could be forced, some food and/or liquids would come up with it.

We returned on September 22 and I visited my family doctor the next day. She scheduled an immediate barium X-ray. The results were back very quickly. It was diagnosed as cancer of the esophagus; the tumour was 2.4 inches long, completely encircling the esophagus, reducing the passage to .6 inches in diameter. The tumour was at the bottom of the esophagus and involving the hiatus hernia.

On October 10 an endoscopic examination confirmed the cancer diagnosis. The tumour was found to be adenocarcinoma, poorly differentiated. On October 16th a CT scan showed that lymph nodes in the chest and near the tumour were enlarged, as where some celiac nodes near the stomach. Determination of malignancy in the nodes would have to wait until surgical removal and pathological examination.

Treatment:

In my case, there was never any consideration of chemotherapy or radiation prior to surgery. I had consulted with 2 surgeons, one who specialized in abdominal surgery, the other specializing in chest surgery. Both recommended surgery as soon as possible. Consultation by telephone with 2 radiologists brought agreement to the plan for surgery only. Photodynamic therapy was investigated, but I learned that surgery precludes this treatment option.

Surgery:

My research indicated that chest entry surgery was preferable to abdominal entry, and that left side chest entry resulted in less complications than right side entry. I sought out the best thoracic surgeon in Winnipeg. He performs left side chest entry.

The surgery was on October 30th. The day before we hosted a family Thanksgiving dinner with 26 immediate family attending. Many of these loving family members were to stand vigil near the operating room the next day. The surgery lasted 5 1/2 hours, and I was sent to the ward about 4 hours later. When I was conscious, I found I was constrained by an oxygen tube, intravenous, catheter, a feeding tube, a stomach drain, and two chest drains. A self-administered morphine pump was attached to the intravenous.

I was horrified when they told me to get up the next morning for a chest x-ray, but in the afternoon I was walking the ward with a physiotherapist. Recovery was swift and uneventful except for an occurrence of severe pain in the right side, which did not respond to morphine. It was a mystery to the doctors who decided it was likely from inflammation. It took them 20 hours to identify the source of the pain and treat it.

I was tube fed for 6 days, and started on a soft diet on day 7, and sent home on day 10. My capacity to eat was extremely diminished. The hospital staff did not explain "dumping" so I had constant cramps and diarrhea during my last few days in the hospital, because I was eating too much. They treated the diarrhea with some form of medication which didn't work, of course.

There were no dilations necessary. When I arrived home my capacity to eat was still severely reduced. Most of the time I had no appetite, in fact the thought of food made me sick. There is no indication as when to stop eating. It was trial and error, combined with pushing the limit so as increase capacity. The feeding tube was left in place, with a plan to remove it one month after the surgery. I was provided with a nurse who was scheduled to visit every day to change the dressing, and to irrigate the tube. The plan was to have my wife take over these duties, but two days after I was home she fell down the basement stairs and severely dislocated her shoulder. The visits with the nurse continued daily for 30 days.

The first 6 weeks at home were very miserable, with occasional dumping and associated diarrhea, cramps and occasional loose bowels from too much fibre in my diet, pain and vomiting occasionally from eating too much, lung infections, and infection about the feeding tube. Many days were spent with feelings of depression from the constant problems. The daily services of the nurse was appreciated, and I consulted in this period with a nutritionalist who specializes with advising cancer patients. I could not sleep in my bed, mostly because of acid reflux, so I used a Lazy-boy chair.

After 6 weeks at home, I was eating a fairly good portion (4 to 6 portions per day = 2300 calories), and my weight stabilized at 222 pounds. Only a 12 pound loss from the date of the surgery. I did not like the food supplements (ensure, etc) so I did not use them. For quite some time I ate every 2 hours.

At the time of writing this (Jan 2, 1996) it has been 7 weeks since I was released from the hospital. I eat 4 times a day. There is an occasional problem with reflux. I start out sleeping in bed with my wife . The bed that is elevated 4 inches. Many nights, reflux drives me out after 2 - 5 hours. I almost feel as good as before the surgery, although heavy work like shovelling snow, etc is still limited. I am walking 3 1/2 miles a day, outside in our Canadian winter, and exercising my arms and shoulders to build up my paddling muscles.

Radiation:

I had my first appointment with a radiologist, about 2 weeks after returning home from surgery. He said that my cancer was quite advanced, that it had perforated the esophagus, and had entered some of the paraoesophageal and mediastinal lymph glands. The celiac nodes were negative at biopsy following surgery, but he said that it is probable that it was a false negative or that they would become affected at a later date. He said my cancer was stage III, and that there was no statistical evidence to indicate that any treatment would result in a cure or extend life.

I didn't ask him for a prognosis, but my reading of medical books indicate that 75% in Stage III won't survive 1 year; 10% will last 5 years and some of them, more. He told me that if he were in my situation, he would decline all treatment and maximize the quality of life remaining. On the other hand, the Canadian medical care system will provide me with any treatment I choose, that is available anywhere in Canada.

After a few weeks of contemplation and a consultation with a chemotherapist, I elected to receive 25 radiation treatments over a 5 week period. The decision was based on the probability that it may slow the advancement of the disease. Another factor was the sense that, if I was doing something, I would feel more optimistic and positive.

My first radiation treatment won't start until about Jan 25. An update will be sent later.

Dealing With Cancer:

We were given the diagnosis at 3 PM on a beautiful fall day. We drove to lovely park by the river and sat with a cup of coffee and talked - but mostly just held each other. After a short while we drove home and prepared supper. Immediately after supper we went to the public library and loaded up with books on cancer, especially esophageal cancer. We soon learned just how deadly this disease is. By 8 PM we had an overwhelming need to share this with our loved ones. Before the day ended we had told some brothers and sisters by phone, and my parents and my 4 children in person. The next day we started on my wifes family and her 6 children.

We had some ambivalent feelings about sharing with them, but soon realized that it was too large a burden to carry alone. The love and support of family and friends gives so much strength and comfort. It took 5 days to speak to all in both families. When possible we wanted to talk to our loved ones in person. The hugs and tears are needed, both for comfort and to aid the grieving process.

Six days after the diagnosis we attended our first cancer support group meeting. What a great source of comfort to meet others with cancer and share thoughts and feelings with them. In a very short time we came to value these meetings and the friendships we are developing there. One young man we met there took us to the Medical School library the very next day. With his help we came away with copies of all they had on oesophageal cancer in the medical text books. The next month was spent in learning as much as we could about oesophageal cancer. To me, knowledge is strength, and fear of the unknown is a terrible burden.

We have since joined a group which teaches visualization and relaxation techniques. I wish to pursue other directions, such as Yoga and alternative therapies, but it has been too soon to research them.

My thirst for knowledge has been a vital part of the decision making and healing process. It has kept me out of the devastation phase. The knowledge that I gained gave me a confidence to be part of my treatment process and decision making. I had the confidence to consult with the doctors as a member of the team.

Now that I've had the surgery and the doctors say they can't cure me, it's now up to me to deal with it, and find the inner resources to resist the disease and find myself in the 25% who survive beyond the norm. I believe that to be a survivor one must live a balanced life which is physically, spiritually, socially and mentally active. In any case, I intend to live every day and enjoy every day. One soon learns to stop taking life, loved ones and health for granted. There is nothing like a discouraging diagnosis to help you decide what is important in life.

Experience with the doctors:

When I was diagnosed, I requested a particular oncologist who specializes in internal medicine and abdominal surgery. He set up all the necessary tests, and attempted to answer my questions. He was very sympathetic, but only answered my direct questions, and then very briefly. He wouldn't discus the relative merits of abdominal vs chest entry. As the test results came in (endoscopic biopsy, CT) he was reluctant to communicate their significance.

In the meantime, I had decided I wanted chest entry surgery and received recommendations as to who was the best. They all pointed to the same doctor. He is an excellent surgeon - the best, but he too was reluctant to talk about future prospects and the significance of test results. Because of my research, I knew what I was dealing with but it was frustrating to not get confirmation from the doctor.

Psychological and Spiritual:

My wife Agnes and I consulted with an oncology social worker, but didn't feel we got much out of it. With our large family, we have plenty of loving supporting family members in four generations. They are a great source of love and support. We found a cancer support group within a week of the diagnosis; we would never miss the weekly sessions. Valued friendships have come from this group. The support of fellow patients is of a quality that can't be found anywhere else, because these are people with the same fears and experiences.

Prayer is a powerful tool for finding strength and peace. The hospital where I will receive treatment, sponsor a weekly meeting to practice relaxation, therapeutic touch, and imagery. These sessions are very helpful in reducing tension. I am in the process of organizing a meditation workshop - will report on it later.

Books have been of great help. The public library has a large section of good books on all aspects of cancer and healing. The hospitals and treatment centres have lending libraries as well. To see a list of my favorite books, see the book list on the main Web page.

I kept a detailed diary from the day of diagnosis until the surgery. It was too much effort to keep it in detail after surgery, but I have since maintained a journal of how I felt, and everything I ate. This has been very helpful in adjusting to the new stomach and esophagus and the eating problems.

What is Life Like Today?

At the time of this writing (the first week of 1996) I am 9 weeks out of surgery. My recovery so far has been excellent. I am eating well; large enough quantity at each meal to maintain my weight with 4 meals a day. If I don't eat after 8 PM, reflux problems are under control with the help of an H2 blocker, Axid (nizatidine).

My day is spent primarily with, reading, researching, walking, exercising, keeping in touch with family members and friends, attending support groups, relaxation, etc, and surfing the net.

Most of my friends and close family have reacted with sympathy and support. As I begin to get back on my feet after the surgery, I long to be treated as before. I don't want to be treated as a sick or dying person. I want to live well, enjoy each day, and be treated as a well person. The people I most like to be with are those who talk about the same things we used to and don't treat me any differently, except of course for making allowances for my current deficiencies.

Some family members are taking a long time to get over the grieving process, but most have picked up on my optimism and desire to live well and happy. The more contact we have with them the quicker they are getting over their grieving.

I can see that I will lose some friends, who don't feel comfortable with my situation, but most are accepting and helpful.

From the moment of the diagnosis, life changed dramatically. And it will never be the same again. My life is completely wrapped up in my cancer. Firstly the priority was learning about it and telling family and friends. The 8 week period after surgery was dominated by the physical and mental aspects of recovery and contemplating the future course. Agnes and I spend more time together and cherish the time we have to be with one another. This goes for all family; there is a need to be in closer contact than before. There is now only one priority - and that is in achieving wellness and gaining peace of mind. Except when a loved one has an important need, the only priority is us - Agnes and I.

I see death as the natural consequence of life. Life has been a great adventure, and it will continue to be. Life is for the living and I intend to live as long as I can, and live well. When death comes, (and there is no guarantee that it will be from cancer), I pray that I will accept it as the entrance to a new life and a great new adventure. Life is complex and mysterious and nothing is more mysterious than cancer. I may not be able to overcome it forever, but with a healthy lifestyle, a positive attitude, peace of mind, loving support, and an active mind and social life, I intend to be among the 25% who survive the longest, and I intend to survive in peace and happiness.

Freemasonry has taught me that happiness is living in harmony with God, nature, and man. Cancer has imposed new challenges and relationships, but I am confident that a new harmony to suit the present circumstance can be found. The survival statistics are grim, but I have never been average before, and I don't intend to start now.

Ron passed away on April 3, 1997