The Beginning of the Story
Cancer has always been present in my family history, an ugly lichen on the family tree. Inevitable.
I remember our mother’s aunt staying at our house for a bit when she was in her final stages of the disease. And our beloved Auntie Lynda, my mother’s youngest sister as she went through her own struggle. The doctor told her the lump under her arm was nothing to worry about as she was too young to get cancer. She later had a mastectomy and chemo, all to no avail. She met with traditional healers but ultimately lost her battle, leaving behind my sister Sandra and her brothers Douglas, Gerald and Dwayne.
Our own mother had her first brush with cancer in the late 60’s and had a hysterectomy. It was therefore no surprise when she got breast cancer in 1982. It was a complicated time as she had left my father two years before so relations were a bit strained. Truthfully, the cancer diagnosis brought us together again. She came to the house the evening before her operation and didn’t talk about it but sighed a lot. I imagine she had her sister on her mind.
The next brush with cancer was our father, who had prostate cancer in 1987. I lived in Ottawa then so just heard from him about his radiation treatment in Saskatoon. It tired him out but he seemed to weather it well.
So, in January 1998 I had a mammogram and got the all clear. The following week I was in a hotel in Geneva and looked down to my right breast and saw a shadow. Touching it, I realized it was a lump. When I got back to Ottawa, I contacted my doctor and had an ultrasound. Nothing showed up. The doctors weren’t worried and neither was I. As a precaution, though, they decided that the lump should be taken out. As it was not urgent and I was travelling for work, day surgery ended up being scheduled for early May. Everything went along well until the breast surgeon showed up in recovery and said “It does not look good”. The malignancy was later confirmed by the pathology report. I had to have a second surgery in early June to be sure they got it all out. It was diagnosed as Stage 1 Ductal Carcinoma in Situ.
I had been talking to my mother and father during this process and they decided to come down for the surgery, which happened to be the same week that I received my LL.M and received a couple of work awards. So, a fairly stressful period. It was actually nice to have them and other family members around as they provided a wonderful distraction. At one point, Mom said to me “Why did you wait so long?” I still don’t know how to answer that - work or I didn’t know how to question the doctors or that I didn’t know enough to ask for a biopsy.
At that stage, I was scheduled to move to Geneva for a four year posting and I was determined that this would not change my life or my plans. So, I went ahead with chemo treatment. At the same time I had a month of radiation and a procedure called brachytherapy that involved skewering my breasts with Wolverine-like needles that contained radioactive isotopes. The oncologists would speak about success in terms of percentages - with this treatment, there is a 92% rate of non-recurrence and with the other 94%. It was hard to know what this would mean in real terms, particularly with all the treatments being taken together.
At my chemo sessions, I wore a blue ice cap to prevent my hair from falling out. A truth-telling nurse once came up to me while I was in the chemo chair to say “Your hair is going to fall out”. Thanks, lady for that love and care. It didn’t fall out, though it did thin considerably. The only hiccup was a reaction I had to an anti-nausea drug, stemetil. I felt I was moving in slow motion, one beat behind everyone else. I couldn’t sleep and after a few nights, I was in despair thinking I could not make it through chemo. Finally as I was throwing out the box the medicine came in, I saw that it was an anti-psychotic medication and I was exhibiting the classic signs of a medicated psychotic. Luckily there were alternative medications.
In September 1998 I moved to Geneva to start the new job. I took a day or two off for the remaining chemo treatments but mostly just focused on settling into my new life there. I finished my treatments in Dec 1998, thanks to the support of colleagues and friends in both Ottawa and Geneva.
But, this is a family story. Shortly after I finished my treatment, my sister Verla was diagnosed with both breast and ovarian cancer. Once she was done, Sandra was diagnosed with breast cancer. They both survived and have thrived, becoming breast cancer advocates in the process. Sandra worked with young women who had breast cancer, which was fitting as all three of us were in our 30’s when we had it.
In 2001, Dad had a spot of lung cancer but these were taken out with the biopsy. Around the same time, Mom had problems with her intestinal tract, bloating etc. All classic symptoms of ovarian cancer that was, unfortunately, diagnosed too late. She had surgery to remove the cancer but they couldn’t get it all out. Her oncologist said that it would be a chronic disease for her, the first time I had heard of cancer being a chronic disease. She had two series of chemo sessions over two years which was very difficult on her physically. It kept the cancer at bay for a while but kept coming back. She slipped away from us before she could start the third series.
The geneticists at the university were interested in my mother and her family given the high incidence of cancer. We were tested and Mom, Verla and Sandra were found to carry the BRAC1 genetic mutation which indicates a higher risk of various cancers, including breast and ovarian cancer. Apparently there is a higher incidence of this genetic mutation in Indigenous and other ethnic minority communities. Sandra did a documentary on the subject and the impact on the family.
Although I had had breast cancer and both ovaries removed because of cysts, including a huge one, I didn’t have the mutation. Something I did not have to worry about.
So, that was my breast cancer story, in short. The cancer was caught early, treated aggressively, I survived and got the (Race for the Cure) t-shirt. I was extremely thankful for that.
In the fall of 2014, I noticed that I had a cough that would not go away. I went to my doctor and she began treating me for reflux. An endoscopy a few months later showed that my esophagus was normal. I kept taking the medication which would work for a bit then the cough would start again. When I was getting ready for a posting to Guatemala in 2015, I told the doctors I would follow up in Guatemala.
Shortly after I arrived, I lost my voice and the cough continued. Over months, I saw various specialists and was treated for reflux, allergies, asthma and a lung spasm. (Having seen a series of specialists, I was reminded of the saying “When all you have is a hammer, everything is a nail.”)
My family doctor ordered a series of tests and consulted with his circle of colleagues on what could be causing the cough. They came up with various hypothesis including radiation damage and a neuromuscular disorder which affected the esophagus. I had more tests, including neurological tests in Canada, and the general consensus was that it was related to myasthenia graves, a neuromuscular disorder. I took some medication for this and while the reflux quit, I had increasing problems swallowing food. I started losing weight, mostly because I adopted a liquid diet. Occasionally food or medication would get stuck in my esophagus but would eventually clear in a few minutes, hours or in some cases a day or two.
At the same time, I started having back pain that was radiating to my hips. I went to a doctor who ordered X-rays and an MRI that showed that my scoliosis was getting worse and one of my disks was compressed. He ordered physical therapy treatments which, frankly, did nothing to help the situation.
I came home for Christmas to spend it with my family. At a dinner on Christmas Eve, I swallowed something that got stuck until the next evening (pig in a blanket - should have known better). No Christmas dinner for me, nor on Boxing Day as something else got stuck (a piece of mandarin orange). My brother-in-law, a general surgeon, was concerned so encouraged/nagged me to an endoscopy.
I went to the hospital in Prince Albert on the 28th and had the procedure which was incredibly uncomfortable and ultimately not useful as my esophagus was very constricted. The doctor ordered a CT scan to find out what was happening and I went home. The next morning as I was getting coffee, my brother-in-law told me that the CT scan showed I had a tumour near my esophagus, nodes in my lung and a spot on my liver.
The following week, I had biopsies done at the hospital in Saskatoon. The tumour turned about to be fibrosis, possibly related to the earlier radiation. The nodes in the lung were malignant, consistent with breast cancer. Further tests have confirmed that I have Stage 4 metastatic breast cancer and the cancer has spread to my bones, liver and lungs. Yup, every cancer survivor’s nightmare. The oncologist said 95% recurs within 5-10 years but there are outliers, like me. I was on tamoxifen for 5 years and letrazole for a further 5. So, it was at some point after that that the cancer cells reactivated. Mutant sleeper cells.
As I mentioned to friends, my plans for a 20 year cancer free party had to be shelved.
As the oncologist noted, the disease is not curable but manageable. I’ve started treatment recently with the medication in oral form.
I expect that I will be under close medical care for a while so I am thinking about early or medical retirement. The fibrosis that is around my esophagus can’t be removed so I will always have voice and swallowing challenges. It’s difficult to be an Ambassador if you can’t speak in public.
Of course this is very difficult as I have enjoyed my career in the foreign service and feel that it has all come together in my head of mission positions. I loved being a representative of Canada overseas. However, the calculus is a bit different at the end of my career as the standard prognosis for someone with State 4 metastatic breast cancer is 3 to 5 years. I hope to be an outlier once again and stretch that out as long as possible. My goal is to enjoy the remainder of my life, spend time with family and friends, focus on being healthy.
I am very mindful how news like this affects someone who has had breast cancer, especially those at a young age. A friend of mine was dealing with her diagnosis of metastatic breast cancer in 1998 when I was first diagnosed. She had a stem cell transplant and was not doing well. I must have looked pretty worried because a friend said to me “Don’t worry, that is not you.” And here we are, 20 years later and it is me. Of course we can’t say who will get breast cancer and if it will metastasize. The best thing one can do is life a happy, healthy life and continue to get medical care on a regular basis. Having been through this, though, I would recommend that if you have had cancer before, get a CT scan, MRI and/or bone scan every couple of years. I always thought I was being paranoid or overly dramatic when a seemingly minor medical issue prompted thoughts of cancer, for example, a cough or sore back, but, as it turns out, it could be cancer.
A few weeks ago, I finally read “When Breath Becomes Air” by Paul Kalanithi, a neurosurgeon who had terminal lung cancer. A funny book for someone with metastatic breast cancer to read but I am glad that I did. It is a beautiful book about coming to grips with the end of life. Very inspirational as I contemplate the road ahead. The line that stuck out for me (for obvious reasons) was: “Death may be a one-time event , but living with terminal illness is a process.”
I drove down Broadway in Saskatoon recently and saw a store where my parents bought me a gift before I moved to Beijing. It is a stained glass prairie scene, very beautiful. Mom said that it was so that I would remember home. I know that she and Dad would be so, so happy that I have finally returned home, to spend time with the family as I go through this next adventure.
