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My Story

by Steven Wenzel

In February 2000, I began experiencing severe back pain, between my shoulder blades, which always occurred late at night, sometimes waking me from deep sleep in screaming agony - never have I known such pain. It was sporadic, maybe once a week at first, and gradually increased in frequency. Nothing I did had any effect on it - yoga, exercise, physiotherapy, weights, painkillers, so I resolved to see a chiropractor upon my return home; I was working in the orchestra of a cruise ship at the time, a very enjoyable and exciting lifestyle, living the Life of Riley. I felt I was on top of the world, and had no idea what was in store for me.

Before I could get to the chiropractor, I put my back out one night on the ship doing a headstand (a yoga posture), in a deserted crew stairwell, which was excruciatingly painful. I collapsed to the floor, and was unable to move for what seemed an eternity, finally managing to stagger to my cabin, in the hopes I could just sleep this one off. No such luck…

Once I began chiropractics, I felt better, the pain lessened, and things were looking up, until one day things got dramatically worse, and the chiropractor suggested I go to see my GP, as she'd done all she could do, and the pain, if it was structural, should have disappeared long ago.

I had had some blood work done when I came back from the ships in March 2000, and it was a bit odd, but no cause for alarm; it was thought that it may have been a low grade infection I picked up on my travels through the tropics. When I returned to my GP in late July, the blood work was still odd, so more tests were ordered - ultrasound, x-ray, more blood work. The ultrasound revealed many enlarged lymph nodes in my chest and abdomen; my sternum was being eroded, which was rather painful, and my entire chest had been pushed out considerably, due to the nodes.

I vividly recall sitting on the examining table in my GP’s office, looking out the window, and knowing that something was very, very wrong, though it would be some time later that we would find out exactly what it was. I had only 2 days before I was to meet a ship to go to Alaska, and had to go, though I promised to return as soon as I could to follow up.

In September, after being medically disembarked from the ship I was on, I went to Princess Margaret Hospital here in Toronto, to do more tests - bone marrow biopsy CTScan, x-rays, fine needle aspiration biopsy, bone scan, none of which were conclusive, and I was finally hospitalized with pneumonia on September 25, 2000. My breathing had become laboured, the expanded nodes were putting pressure on my wind pipe, and it was becoming apparent that this was a VERY serious illness. During my hospital stay, a biopsy was performed, and on October 6 2000 I was diagnosed with Stage 4B Hodgkin's Lymphoma. cancer.

Aside from back pain, I was virtually asymptomatic, something I've heard from many other survivors, though in retrospect I realize that fatigue was becoming an issue, and I had night sweats, though not enough for me to consider them to be problematic. It wasn't until I got pneumonia that I realized something was VERY wrong.

Today

My life today, 6 years after diagnosis, has resumed a relatively normal, pre-cancer appearance, for the most part, after undergoing a LOT of treatment:

• 6 months of ABVD chemotherapy
• relapse
• clinical trial
• stem cell transplant

I am a work in progress, as are any other survivors. You just never know if you’re free of cancer for the short-term or long-term, it’s something you live with every day of your life. I don’t think about it too much, really, though when I feel out of sorts, or notice any suspicious developments in my body, that’s the first thing that springs to my mind – it’s back.

I will never be the same after having had such an experience, though I’m back out on the ships, playing in the orchestra, and now running the entire music department on board, something I really enjoy doing. I still carry on with the things that were important before cancer – biking, hiking, travelling, yoga, meditation, SCUBA diving, exercising, hanging out with friends, landscaping, etc, though now it has all become much more intense and vivid. Life has become much more precious, and the day to day things that I once took for granted I now treasure, and laugh at people obsessing over the banal trivialities of their lives – office politics, traffic, weather, etc, it’s endlessly entertaining.

I go back to the hospital every 12 months to do follow-ups, which allows me to continue doing ships and whatever else I want to do with my life, and gives everyone involved a break. I feel great, I’m very active, and fully engrossed in my life, so grateful to be alive, in awe of the miracle of life. I have some BIG plans for the near future, among them:

• Speaking to other survivors about my cancer experience, showing by example what is possible
• Travelling around the world
• Spending more time on ashrams, doing nothing but yoga and meditating
• Writing and performing in my own show

I have already achieved many of the goals I set during my treatment:

• Spending time with HH the Dalai Lama
• Learning Spanish
• Buying a condo in Toronto
• Going on biking/hiking adventures to Banff and elsewhere
• Backpacking through Central America for 2 months

The “Gift” of cancer

My life didn’t end with cancer; on the contrary, in many ways it began. Facing cancer and my own mortality was the proverbial wake up call that so many others have experienced, that awakens them to the treasure and gift that life really is, in a way that nothing else can. Not a day goes by where I’m not thankful to be alive, aware, and completely awed by the miracle that is my life.

I understand that cancer is not a death sentence. I’m living proof that it is possible not only to survive cancer, but to grow through the experience, and come out of it a stronger, more compassionate, fully-functioning human being.

“FRIENDSHIP DOUBLES OUR JOY AND DIVIDES OUR GRIEF”

A story about best friends surviving cancer….

by Mary Grogan and Barb Sheedy

It was 10:30 a.m. on October 4, 2002, and the simple act of untangling my necklace that was snagged on the high collared blouse, changed my life forever. I felt a lump in my neck! Four months later after many tests, and much anxiety, I was diagnosed with B cell follicular non-Hodgkins lymphoma. To say that I was relieved with finally getting a diagnosis would be a lie. I truly felt I was looking down the barrel of a shotgun, even though I was only a 53 years old wife, mother, and teacher with plans to do more living. Now my only choice was how I was going to react to the diagnosis. That has made all the difference in the world. I knew that I could not do this alone. Although family, colleagues and friends were all supportive, I consciously chose to limit the family’s burden of shock and grief. My natural response was to protect my husband and children. Therefore, I reached out and grabbed my best friend Mary for main support and balance.

From the moment of the first frantic call describing the lumps in her neck, to the period of speculative testing and diagnosis, I had significant moments whereby I wondered not only if I had the strength to support Barb, but if I was willing to pay the price that such support would entail. How would I handle my own feelings of fear and anger? How would I handle the burden of knowing that this slow moving B cell follicular lymphoma would cause me to share the painful “wait and watch” stroll? How could I safely encourage Barb to refocus her mind and energy to wider possibilities? How would I handle the imbalance in our friendship whereby, her shock, anxieties and needs became a force that had seldom surfaced in her previous pre-lymphoma life of stability, and predictability? How would I manage to ensure that our friendship continued to offer a place of safety, honesty, and laughter when so much time was spent discussing the serious topics, the latest research , the fears of chemo, the persistent fatigue, the impact on her family-in particular her husband and children, and the possibility of suffering and an early death ?

The first thing I did was openly and directly affirmed my commitment to our friendship. Our 35 year old bond of love, loyalty, and laughter is a testament to the truth, “friendship doubles our joy and divides our grief.” Since it has been built on shared realities and secrets related to personal and professional growth, marital and family experiences, dreams and disappointments, births and deaths, then it will embrace, not deny, the reality of lymphoma as another one of life’s challenges to be shared.

I was willing to share the emotional roller coaster of “living with lymphoma” through the many stages and changes, but I made it clear that I would not let it define the friendship. Despite the disturbance that invaded on the balance of give and take, laughter and tears, I related to Barb that same way as always, as a person, not a disease. Certainly, I continued to cajole, and to challenge her thoughts or idiosyncricities (even her belief that she should have the job of the Leaf’s Scout or Don Cherry’s side kick) whenever necessary.

Mary was always calmly present to listen to me with daily phone calls about the incessant fear and anxieties related to lymphoma, treatment possibilities, life style, quality and longevity of life, decisions about career, alternate therapies, and current stressors, like the death of my mother and possible loss of my work life. Mary gave names to my feelings and affirmed that my wild responses were normal and healthy reactions to shock and to losses.

Laughter, always the laughter, truly is the best medicine. We decided that in the event of chemo, I would become a blond and Mary would become a red head. What a truly scary thought! Since this was promised during our conversation at my mother’s wake, a few days after my diagnosis, she has hinted that a red head may not be in her best interests.

Mary has not sidestepped any issues and has always been honest, direct, patient and encouraging. Each and every day, she has told me how proud she is of me for each baby step I take in living with the disease. By making decisions, I gained some sense of control and progression so I could move from shock to action.

I have weekly acupuncture and craniolsacral treatments at a wellness clinic. I have retired from my teaching position, after 31 years of fulltime work to teaching on a part time basis. I have returned to the gym on days when my energy allows a workout. I continue our regular girls’ dinner dates. We have resumed our double featured movies with the large popcorn. I have spent more time with my sister and 86 year old father, walking, lunching and even going on our first Caribbean cruise together. In December, I went to my godson’s wedding on the beach, in Costa Rica. It was a wonderful experience to be introduced by my son David at King’s University College in London, as the keynote speaker for a non Hodgkin’s Lymphoma fundraiser. This has motivated me to use my teaching talent to assist with the public speaking tasks set by the Lymphoma Foundation of Canada. This summer I have a European trip planned with Mary and our husbands to see Ireland, Scotland, England and France. Without the open and honest and fun aspects of my friendship, I do not think that I would have been able to move forward and live life with a sense of optimism and wellness.

This lymphoma cruelly disturbed the balance of our friendship, at least initially, so there was little time to get a sense of control. Barb’s overwhelming feelings sometimes made me want to withdraw but to retreat any point when Barb was reeling from the shock of diagnosis and grief would have been selfish and cowardly. As well, Barb wisely never gave me a chance to get away. She never apologized for reaching out and expecting me to be there just like any other crises that we have shared over the years.

I believe that life’s fragility has slapped our consciousness in a serious, threatening way forcing our communication to be honest, direct and meaningful, refusing to waste any time of petty issues. That sense of urgency that comes with diagnosis forced intense dialogue whereby perspectives on family, career, travel, research, chemo stories, funeral songs, hospitalization experiences, dreams, and fears of the future were shared with raw honesty and freedom. It seemed to facilitate Barb to move from a passive helpless victim to an active participant in her life. Our fun times together with family and friends limited the focus on isolation and self absorption. The new periods of fatigue were acknowledged and respected in simple adjustments of time changes and rest periods. I expected that Barb would address her needs and negotiate for any necessary changes that would be required because I am not a mind reader. She has sleep-overs when we have activities in the west end. Our priority is to spend more time together because this is a well time, without treatment complications. There are more spontaneous movies, more trips to the bank withdrawal machine, more walks through the park and more intimate family dinners. When her new found knowledge of research gets translated into an authoritative teaching performance, I will continue to raise questions or to challenge the information, regardless of my need to protect her from stress and conflict.

What do we really gain in this world if we just seek out the good times with friends and avoid the painful parts? I love the Sicilian proverb that states “Only your real friends tell you when your face is dirty,” because in truth we all want to look good, altogether and whole. We need good friends to do that successfully!

So our friendship is a precious treasure that offers all the good things in life…love, compassion, forgiveness, tolerance, adventure, and laughter. Thus, it needs to be nurtured with the simple things so that we can face the rest of the world with strength, courage, confidence, laughter and hope. It is only when we are connected by friendship, and tested by adversity, that we are truly alive and living with rich meaning and sacred purpose.

 

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