I have stage 4 metastatic breast cancer. It’s in my liver and bones, maybe my lungs and thyroid.
Every week I run into and get messages from people who’ve heard the news. I can tell by the tone of their words or the look in their eyes: they think I’m dying. Of course they’re right, I am dying. But what is often less obvious is that the reality of impermanence applies to them as well. It’s simply a matter of time. We’re all dying.
This blog post is dedicated to my cancer story.
I find solace in reading about other people’s cancer stories. I hope others find solace in my story.
I was first diagnosed with stage 3 breast cancer on Friday April 13, 2012.
(To read that part of the story visit, Living through Cancer)
Fast forward 7.5 years, on the Friday of the Labour Day long weekend in September 2019 received a call from my oncologist. My family doctor had just sent him my file. The oncologist told me to go immediately to the closest emergency department. My heart began to race as my thoughts rushed ahead to worst case scenario outcomes.
Could it be the cancer coming back? The last time I saw my oncologist in 2012 I asked him how I would know that the cancer had come back, he said ‘you’ll get very sick, you won’t get better, and then you’ll come see me’. Could this be what he meant?
I had gone to my doctor because I was losing my appetite and had noticed that my urine was dark. My doctor thought I was jaundiced. She said the skin and whites of my eyes were yellowish. I hadn’t noticed. She sent me for an ultrasound and blood work. The very next day she told me that they had found some sort of obstruction blocking the bile duct. I asked what the most common reason for a blocked bile duct was. Her words are etched in stone in my mind: pancreatic cancer.
After waiting in emerg for 6 hours, I was finally seen. The doctor was easy going, he kept saying he’d have me out by the morning. He ordered a CT scan because he assumed it was a gallstone blocking my bile duct.
At 3:00 am, the doctor came to my bedside and said, “I’m sorry, I have some bad news. The scan is showing masses in the liver. It looks like cancer. We’re going to admit you right now.” Then he just walked out of the room. His job was done. The nurse who was checking my vitals when the doctor came into the room began to console me. She told me that I should feel comforted in knowing that I was in good hands in the care of the hospital. She said that the blocked bile duct brought me to the hospital and this could be a blessing in disguise. “At least now you know you have cancer,” she said. I looked into her eyes, I could feel the compassion oozing out of her, I remember thinking to myself she has the hardest job and most meaningful job, like a shaman she guided me into another world.
In the hours leading up to the doctors pronouncement, I was lying in the emergency room making plans in my head. Planning my next holiday, the workshop I was looking forward to attending, my next visit with my daughter… We fill our lives with plans until one day plans have no meaning. Left alone in the cubicle after the nurse left, my mind shifted gears. I began to remember and feel all the sources of love in my life. My thoughts drifted from person to person. The plans faded away. All that remained for the next few hours was a feeling of grace. It was quite surreal. In retrospect, I’m not sure what took place in those hours. It was as if I entered another state, one where frivolous plans had no meaning and the only thing that mattered was the memory of what it feels like to love and be loved.
Once diagnosed with cancer, fear that the cancer will reappear becomes a daily recurrence.
30% of breast cancers come back within 10 years.
Mine took 7 years, but in retrospect I think I have been living with cancer for about 3 years. More on that later. When cancer reappears, it’s called metastatic breast cancer (MBC), stage 4. There is no stage 5. Stages 1-3 are curable. Stage 4 is considered a terminal disease that can be managed but not cured.
I was admitted into the hospital at 4 am.
At 8 am, after being awake all night in emerg, the doctor came into my room. My husband had gone home to get some sleep and, alone in my room, the doctor told me that I had an incurable, terminal cancer. He went on to say that I had the right to refuse treatment and to ask for assisted dying. He said that he does not always talk about these subjects with patients but in my situation, he felt it was appropriate. I wasn’t sure what he meant.
As soon as he left the room, my cell phone rang. It was just after 8 am and the name on the phone was Ronnie O, an old yoga student who I had not spoken to in five years.
He said, “Diane, is that you?” and immediately he launched into a dream that he had just woken up remembering. He felt compelled to call me and tell me about it. He said I went to him in his dream and surrounded him in light and love. He wanted to tell me how much I had helped at a time in his life when he needed support, he needed me to know how much he had appreciated everything I did to help him.
I started to cry. Ronnie said, “Diane, are you ok? What’s going on?”
When I told him that the doctor had just left my room and that I was in the hospital and had just been diagnosed with a terminal disease, he was shocked.
Timing is everything. I needed to have a big cry.
I stayed in the hospital for a week. By the time I left, I weighed 106 lbs. I was shriveling up.
I had been scanned from toe to skull multiple times with various radioactive and iodine solutions pumping through my veins.
I logged into my hospital records after a few days.
The radiologist report that I saw in my inbox described my situation as ‘likely cholangiocarcinoma’. I googled this and found out that it’s a rare and deadly bile duct cancer. My prognosis was “months.” No wonder the doctor on the first morning had been talking to me about assisted dying. I wish he had told me they suspected cholangiocarcinoma, instead of me having to read the report on my own.
A few days into my stay at the hospital, I had to have a procedure called an endoscope. They gave me a general anesthetic and put a probe down my throat, into my stomach, across the small intestine and up the bile duct. They put in a plastic stent to open up the bile duct.
While they were placing the stent, they took cells from inside the bile duct and sent them to the pathologist.
On the day that I was leaving the hospital, the oncology nurse came in to explain the next steps to me and told me that the cells taken from the bile duct were not malignant. This ruled out cholangiocarcinoma (bile duct cancer.) This was good news!
It was confirmed with a biopsy and CT scans that the cancer in the liver and bones was the old breast cancer that had metastasized, meaning it had spread to other sites in the body. So even though it’s in the liver or bones it’s still called breast cancer.
When I learned that I had metastatic breast cancer, I joined some FB groups for MBC. My own FB group (Yoga and Movement Research Community) moved to the back burner and I spent my social media time reading about other women who were dealing with the same diagnosis.
Their stories both inspire and terrify me. Some women in the groups have been living with MBC for over 10 years, one woman 22 years, while some die in less than 2 years.
The prognosis for MBC is vague. Living in a perpetual state of uncertainty is the new normal for me and thousands of other women dealing with this disease.
Four years ago a new drug called Ibrance was approved to treat estrogen positive HER2 negative metastatic breast cancer. Ibrance slows down or stops the proliferation of cancer cells. It’s a capsule, I take it once a day for 21 days and then I take one week off. The worst side effect of Ibrance is that it lowers white blood cell counts. The one week off gives the body time to recover.
Some women who started to take Ibrance 4 years ago are still alive today. Doctors have no idea how long they’ll live.
The old statistics for MBC are no longer accurate. Clearly, women can live for years if the drugs work. Once the cancer outsmarts the drug, it’s replaced with a new drug, and thus the battle with cancer ensues. The advances in cancer research are encouraging. The trend is moving towards treating cancer with more specificity and a new class of drugs called immunotherapy drugs. In order to qualify for these new drug trials I’ll have to get my genes tested for mutations. This gene panel is not available in Canada. It is being used in the USA and Europe but it is not covered by OHIP, our universal health care in Ontario.
I will be scanned every 3 months to determine if the cancer has progressed, regressed or remained unchanged. If the drugs I am currently taking don’t work, then the next round of drugs are chemo drugs or a combination of chemo and immunotherapy drugs.
Cancer has hacked my system.
Signals from my body to brain are confused. My sense of proprioception has been seriously compromised.
The radiation oncologist that reviewed my images told me that she was surprised I could even walk given the severity of the cancer in the bones of my pelvis. She said that I was at risk of pathological fracture. My daughter Kathryn, who was with me for that appointment, asked what would I have to do to break the bone. The doctor replied, “Any fast movement, like sitting on the couch too quickly.”
This doctor, and the doctor who came into my room that first morning, instilled a deep sense of fear into me. Up until that point, I had been walking with a small limp. Soon after that appointment, my condition worsened at an alarming rate.
I understand the importance of providing patients with all the information, but instilling fear instead of hope can have lasting negative implications.
I recently had 5 doses of radiation to the right hip. I don’t think it helped, but maybe it takes time. Apparently bones can remodel with radiation treatment.
I need a cane, crutch, walker, fingertips on walls or counters, or holding someone’s hand, to help me walk.
Sometimes, on a good day, and after a lot of rest, I practice walking slowly without a support. It takes all of my concentration.
Looking back, it’s clear to me now that the cancer started to come back a few years ago. I had been having minor hip issues for a while — they would come and go. I never once thought it was cancer. I was studying gait mechanics during this time and managed to always find an alternative pathway in my gait patterning, one that avoided pain. The limp I describe was my way of compensating for the pain I was feeling. I’m not sure if my prognosis would be any different if I had known I had cancer 3 years ago. I have no regrets, I’m glad I didn’t know. Living blissfully unaware was wonderful.
The first 2 months post diagnosis have been extremely challenging. I was moving less every day, afraid of the pain, I became very protective of any movement that caused even the slightest amount of pain.
I decided I needed help. I couldn’t trust my own sensations anymore, so I sought out a movement therapist. She helps me move through the pain with sensitivity. I am reminded that my body is clenching and gripping out of fear. She helps me to unwind the tension by offering support when necessary. Slowly I am recovering my sense of proprioception which has been seriously hacked by the cancer.
Aside from my mobility and associated pain, my overall health is good. I have a good appetite. I’ve put on weight and I am sleeping well.
One day, when I was feeling sad about the deterioration in my body, my daughter reminded me that there were so many movements that were still accessible. We went through them together: push ups, downdog, squats, bridge, core work, etc.
As long as I’m still alive I will continue to do my practice, which is another way of saying that I will practice being mindful, regardless of what ‘it’ looks like. I’ve gone through many iterations of styles and techniques only to come to the realization that self-realization has nothing to do with tradition, lineage, systems or gurus. All of these techniques were simply organized opportunities to feel and focus on the present moment.
Funny how sometimes it takes almost a whole lifetime to realize that everything was perfect just the way it was — not to say that this perfection does not include hardships and suffering. No one is immune from tough times. Suffering is not something I would ever wish on anyone, and yet it is during our darkest hours that we come closer to connecting with our deeper purpose.
When everything else fades away, what matters stays.
If you are interested and would like to reach out to me please leave me a message, I’d love to hear from you.