A snowy day, mid-December, 2015, I was sitting in my car. The receptionist at my family doctor’s office had called to let me know that the results of yesterday’s bone scan were in and I needed to come in to discuss them. I asked if I should bring someone with me for the appointment. She said yes and my heart sank. I knew that meant my breast cancer had returned. The intermittent, revolving pain I had been experiencing for months was cancer that had now spread to my bones – this spread is called bone metastases. I took a few moments to collect myself, then I walked into music class with my five-year-old. Overwhelmed. Scared. Unable to concentrate, I could barely breathe.
Three years prior, I thought I had beat breast cancer. Diagnosed at stage II, I had surgeries and chemo. Radiation wasn’t necessary. The physical effects in the grand scheme of things were very mild. The psychosocial and spiritual recovery was much more difficult. I had a toddler at home then, and struggled to pull myself out of the post-treatment blues. Eventually I saw a psychologist to help me cope and make sense of what I had just been through. It helped me put the pieces back together, to pick up my life again.
During that first visit with my oncologist to discuss my metastases (also known as mets), in less than an hour I discovered that there is no cure for bone mets. I will be on treatment for life. The treatment goals had shifted from curative to disease containment and symptom management. “So… from here on in, everything is palliative.” I said. My oncologist replied, “Well, there is palliative, and there is PALLIATIVE.” I did not mean that I thought I was dying, just that I was aware of what “disease containment and symptom management” meant. I also learned that I would switch to a new treatment and begin five radiation treatments. Because of the fragility of my bones, I was not to lift more than 10 pounds, run, jump or do any activity other than walking.
My husband and I walked out of the office in shock. I scrambled to learn what this meant for my life. For my future. For my family. I was in pain and couldn’t walk without limping. I couldn’t lift my young child, my cat, a full laundry basket. I had to avoid slipping and falling…. and this was December in Canada. At that time, I had no idea if these restrictions were permanent or temporary. I had no clue if I would ever feel better again.
The question I did not ask, (and have never asked) was “how long do I have?” No one has a crystal ball, and the answer to that question was not going to help me live better now. My physician had assured me that people could live for years with bone mets, that there were many treatments available for my type of cancer. He told me that metastatic breast cancer can be like a chronic disease for some. I eyed him suspiciously, thinking he was just telling me that to soften the blow. I attended to my “disaster plan” – updated my will and powers of attorney, and had many hard conversations with my husband.
Bone mets came just as I was getting back on my feet again. The littlest one was now in school. I was a few years from my breast cancer experience and doing well… except for the unexplained pain. I wanted to get back to work. But in an instant, my world was turned upside down, again. However, this time I became one of the women that others in the cancer support groups tend to shy away from. I now represented a survivor’s greatest fear. Recurrence. Spread. Metastases. The term “survivor” no longer fit my experience. I felt like a failed survivor. Surviving now became an everyday event that I could not escape. I had to grapple with my own mortality, the truth that without a cure, my intention of living to be one hundred years old was not likely to happen.
I had to learn how to live with bone mets, how to live in my new reality. I wanted to maintain and optimize my health, but I didn’t know how. Never having been a particularly body aware or athletic person, I worried that in my ignorance I would do something really stupid and hurt myself. I didn’t know how to nourish my body, how to move safely or exercise.
I had questions – lots and lots of questions. Every appointment, I asked more questions of my oncologist, oncology nurse, and family physician. I consulted with a dietitian and a pharmacist. I accessed social work and spiritual care to process my grief. I knew I needed the expertise of a physiotherapist, but it was not easy finding one who would work with me and the complexities of my bone mets. At my cancer centre, physiotherapists only worked with inpatients. A physiotherapist at a cancer rehab clinic took one look at my bone scan report and immediately referred me to someone more experienced – and a good 90 minute drive from my house! Eventually, I found a well-experienced local physiotherapist with a specialty in pelvic health. Her contribution has been invaluable to my wellbeing!
I looked online for information, research and resources that could help me learn to live with bone mets. What little information I found didn’t seem to speak to my age or circumstances. They talked about good slippers, clear hallways, canes and walkers. I was in my 40s, chasing a five year old.
That was over two years ago.
I kept asking my doctors what exercises I could do. With treatment, my functioning returned and bone health improved. In the two years since my diagnosis, I have literally travelled around the world and back. My pain has been mostly absent. I have gone for months without needing any pain medication at all! These days, the pain comes and goes, mostly managed with over the counter pain meds. I do have bone mets after all. I move as much as possible, with an average daily step count of over 9,000 for the past year. You would never guess that I have any ailments at all from watching me. I nourish and care for my body to the best of my ability. I seek to manage my stress and care for my soul. I focus on people and experiences that are most important to me, and that will help me live well and thrive in the here and now. I am finding my voice as an advocate, facilitator and educator, and am doing my best to make my corner of the world a little bit better.
As a person living with bone mets, I am learning, engaging with other patients and discovering some of the gaps in the resources and education materials we need. I am researching resilience – the integrated resilience of the patient living with a life threatening illness, their family and the healthcare professionals that care for them. I am discovering how very little research has been done on the impact of exercise on people living with bone mets… it would seem the fragility of our bones excludes us from many studies. The net result, though, is for both the clinicians and the many people living with bone mets, whether it is for months or years – and some are living 10, 15 or even 20 years with bone mets, we are left to figure it out on our own.
Exercise is much more than a vigorous, heart pumping workout. Exercise is moving our bodies in ways to promote physical and emotional health, flexibility, strength, endurance and balance. From babies doing tummy time to people doing gentle seated stretches at a hospice – and everything in between, safe movement has potential benefits.
The population of people living with bone mets is diverse. It includes women and men, young and old, people who are physically active, those who are no longer able to be active and those experiencing progressive disability. There are individuals who experience little to no pain, and those who struggle with chronic pain. People who are parents of young children, and people who are grandparents. Individuals who have mets to the bones as well as to other organs. Some with many bone mets throughout their spine, pelvis, ribs, etc., and some with a single metastatic spot.
We need cancer rehab programs that include professionals comfortable and competent with assessing, educating and working with people with bone mets on how to maintain and optimize their health, on how to move and exercise safely at every stage of disease progression. We need information on nutrition for bone health, and to be included in community initiatives that educate on how to prevent falls. Information regarding spinal compression fractures, and when to seek emergency care. We need research that looks at how exercise and nutrition impact quality of life and disease progression. We need patients and family members collaboratively working with healthcare professionals and researchers to develop needs assessments, research initiatives and patient education materials to ensure that the needs and questions of patients are being addressed.
We learn to live with bone mets. It is an ongoing process as our emotional and physical health changes and our needs change too. We learn how to nurture our bodies, how to cope with ongoing daily risk assessment, with grief and loss.
A diagnosis of bone mets is life changing, but it doesn’t necessarily mean it is game over.
Eileen Dahl is a Registered Psychotherapist, Certified Spiritual Care Practitioner, an Independent Resilience Researcher as well as Speaker, Educator and Consultant. She has been living with bone mets since 2015.