Living like I’m dying

By Cindy Barka

I’m from Ottawa. I was diagnosed de novo in March 2011 with metastatic breast cancer and metastasis to the bone. I am 53 years old. I am a mother, daughter, sister, artist, lesbian, atheist, and gardener.

In my previous life, I was a dispute resolution specialist with the City of Ottawa, a member of the Law Society of Upper Canada, a paralegal in the province of Ontario, and a bargaining negotiator for a national union. Luckily, I was blessed with the tenacity to argue a point because I had to become my own advocate in my journey to diagnosis and beyond.

In February of 2009, I fell and was diagnosed with concussion but I couldn’t seem to recover. I was always tired; I ached all over, and I had ghost pain that would come and go. My family doctor sent me for head scans, tested for Lyme disease and fibromyalgia, and sent me to a rheumatologist and neurologist.

My workplace insurance decided that I needed to see a psychiatrist, who diagnosed me with depression in the absence of any other diagnosis.

After the depression diagnosis, it was extremely difficult to get any doctor to take me seriously. Even before shaking my hand or introducing himself, the neurologist asked, “Why are you so reluctant to take antidepressants?”

My answer was simply, “Because I’m not depressed. There is something wrong with me and it’s your job to find out what that is.” I was labeled as a difficult patient. I continued to seek a diagnosis for two years as I was continuously brushed off and told my pain was likely caused by depression.

I was sent to a “return to work” physical rehabilitation program twice that included lots of physical activity, sessions with a psychiatrist, and a weekly visit with a psychologist. I was told to exercise it out, take brisk walks, and meditate through my depression pain by well-meaning staff who did not have a full diagnosis and were acting on what was reported to them.

I believe that the diagnosis of depression hindered the discovery of my cancer. Ironically, I’ve never been diagnosed with depression since the cancer was found. A lesson for our medical system that will go unnoticed.

It wasn’t until my family doctor asked for an X-ray that my spinal fractures were discovered.  My L3, L4, and L5 vertebrae had both macro and micro fractures, along with cancer lesions and signs of significant healing to the bone fragments, meaning they had been fractured for quite some time.

My family doctor called me in on Sunday, March 6, 2011 to tell me that she had received the results of my back X-ray. Being called out on Sunday is never a good thing.

The family doctor explained that this type of fracture is usually caused by one of three things, the first being osteoporosis, except I didn’t have any other signs of osteoporosis. The second: it can be caused by severe infection; however, my blood test had shown a normal white blood count. The third and most likely was some form of cancer.

My family doctor asked me if she could call an ambulance to take me to the emergency department at the local hospital. I opted to drive as I had been working through my pain for many months and another hour wasn’t going to make a difference.

In the hospital, I was told that it was definitely cancer, but the medical team didn’t know what kind or where the primary site might be. I was admitted and scheduled for a biopsy of the spine.

Eleven days later, I had grafts from my left hip bone transplanted to my spine and bone fusion completed along with a cage to protect my spinal column. My back is oddly flat for about three inches now where vertebrae used to be. I have minor manageable back pain but my hip is always sore.

Recovering from the hip grafts seemed to be the worst at the time. I was admitted to hospital on March 6 and released in late May. I spent another month in bed at home.

While in hospital, I was told that I had metastatic breast cancer and that there was no cure. I was transported to and from the Civic Hospital to the General Hospital across town by patient transport. I received radiation and in addition to the drugs I was already taking for the spinal surgery/hip graft, I was put on tamoxifen.

I was bombarded by information and pamphlets that I was incapable of comprehending nor could I physically manage them. I was in shock and medicated better than a 70s rock band.

While in hospital, I lost my job as the position was contractually reposted after two years’ absence and I went to full medical retirement.

I still had a lot of recovering to do once my spine had healed enough to start a physiotherapy program. I had to learn to sit, walk, and care for myself after such a major surgery.

I was in no condition to return to work, although that did not prevent my insurance company from calling me while I was in the hospital, in a body brace and bedridden, to yell at me that I wasn’t taking advantage of the employee return-to-work program.

I tried to explain that despite the modifications my employer was willing to make so that I could return to work, it was impossible as I was in a body brace with a catheter, a morphine drip, hip surgery, not to mention a broken back and a metastatic cancer diagnosis.

Since the representative was unwilling to listen and kept saying I was making excuses to not return to work, I said I was prepared to work with some modifications. I asked for the hallways in the courts to be widened so that my gurney would fit into the court room. I asked to have a medically licensed nurse on hand to administer the narcotics, provide a bed pan, to clean my catheters, and provide the controlled narcotics that I required for pain. I asked for an increase in my work insurance in case I made poor decisions because of the narcotics I was on so I would not face the repercussions of those decisions.

My insurance agent quite literally was screaming so loudly on the phone that I was being ridiculous as I lay in a hospital bed with IV tubes, catheters, a body brace, and a diagnosis of Stage IV cancer. She did not appreciate the irony. Luckily, a nurse and a visiting member of the surgical team were there to hear this exchange.

My insurance denied my claim for a body brace as they didn’t feel it was necessary or that it would “contribute to my overall healing.” The head of the neurological department wrote them a letter.

I had issues in the hospital with decisions being made by the medical team without consulting me. The medication was causing suicidal ideation, which was completely ignored until I saw an outpatient pain management specialist. One night I had a nurse tell me that I needed to get out of bed and use the bathroom instead of a bed pan until I asked if that was okay with spinal fractures.

On another occasion, post-surgery, the doctor was encouraging me to use my narcotic pump more frequently as I was experiencing pain. The nurse, on the other hand, said to me, “You can’t continue to depend on narcotics so you should try to minimize the use unless you really need it.“ My friend who was helping me that day said it was no wonder I was confused about my care and next steps.

During my visits via patient transfer to the cancer centre, my sister was told that I had approximately 22 months to live.

I had no reason to doubt the prognosis so I made financial decisions based on the fact that I would live 22 months or thereabouts. I sold my house. I cashed out my RRSPs. I took trips. I bought gifts for my children and generally lived like I was dying.

After two years and then three years then four years and now seven, I am living with the repercussions of not having made better financial decisions for longer-term living. I learned more about metastatic breast cancer and that there are many people who have lived beyond their prognosis.

That prognosis, and the decisions made because of it, seven years later, have impacted me financially in a very serious way. I am forced into existing financially instead of living my end days, weeks, months as large as I would like to. Almost every expense has to be calculated.

My children made decisions based on my diagnosis as well. My oldest son left the military to be closer to home. My daughter moved back to Ottawa from Toronto, abandoning her education. My youngest son also quit university.

I didn’t realize at the time that they were also going through stress and trauma because of my diagnosis. I mean, I knew, but didn’t appreciate the full impact.

I can’t believe how much I withdrew from them. I was in so much pain and emotional turmoil, coping with the dissolution of my relationship, finding validation outside of work and determination to walk again, searching out cures for cancer, and pursuing my end-of-life dreams, that it took me almost two years to realize that I had also abandoned them. Possibly to protect them from my eventual demise?

Things are much better now. The kids have pursued new careers, returned to school, and generally started to build and live their lives, even though this diagnosis hangs over all of us.

My already tenuous eight-year relationship fell apart as my partner could not handle my cancer diagnosis nor was she able to cope with a person who may be physically disabled.

While breaking away from that relationship was a good thing, it was just one more difficulty in a series of many that created isolation.

I was no longer able to play softball or volleyball. I was no longer working. Friends drifted away and my relationship ended. Both my dogs died less than six months apart, coincidentally from two different cancers. I was extremely isolated. There are very few people who want to start a relationship with a metastatic cancer patient. Perhaps it’s an undiscovered niche dating market: unemployed lesbians with metastatic cancer?

Once a year or so my insurance asks if I’m getting any better and what steps I am taking in trying to ameliorate my situation. They have stopped asking in their ever so polite way why I’m not dead yet: “You have exceeded our life expectancy clause; please advise us of any changes to your medical prognosis.” Depending on whether I’m amused or not, sometimes I just write STILL ALIVE and STILL HAVE CANCER and return the forms. I do have a very warped sense of humour.

I’ve had the usual ups and downs in the last seven years, but cancer has also given me an opportunity to try new things, travel to new places, mend broken relationships, and dissolve bad ones, and to recognize the difference and to have the courage to try.

I adopted a senior dog at Christmas and I have been honing my painting skills, a passion that I really didn’t pursue pre-diagnosis. I recently took a trip to Turkey with my daughter, and both my sons and I share a house.

I underwent additional radiation therapy for new lesions on my hip and pelvic area in November 2017, and I will be switched to the Ibrance/fulvestrant combination next.

Beyond that, who knows? I’m spontaneous and will take every opportunity that comes my way, so maybe I will find myself sipping coffee in Istanbul again or becoming an urban artist and taking up graffiti. I’m going to live like I’m dying.