Chemotherapy first!?! When I heard this from the surgeon, I was shocked. I had gone into that first appointment thinking “just cut it out of me and everything will be fine!” But the tumour was too big. They needed to shrink it before surgery. I heard the words, “It’s advanced but localized”. I clung to the word “localized”. I wasn’t thinking stages at this point.
To be honest, I was more afraid of the chemo than the cancer itself.
It brought to mind images of people with no hair, pasty white skin, throwing up, stick thin figures on death’s doorstep. I was terrified. That was October.
Then came the waiting. After a biopsy and MRI, the doctors weren’t sure if it was in fact breast cancer. Maybe it was coming from another site, a vital organ. More tests: bone scan, CT scan, another MRI. The waiting, not knowing, is excruciating. Finally in early December, I had my first appointment with the radiation oncologist at the cancer clinic. Up until that point, I’m not sure I even knew that a doctor specializing in cancer is called an oncologist.
It was walking into the cancer clinic for the first time and looking around the waiting room that I felt like I had officially arrived into the cancer world. There was no denying it now. It was staring me in the face. I was part of this tribe now, soon to have no hair.
And it was at this first visit that the oncologist confirmed…finally…a diagnosis of breast cancer. I thought this is good news…right?...it’s not liver or bone cancer that has metastasized to my breast.
Then the radiation oncologist said “Stage 3” and that hit me like a ton of bricks
…only one step away from Stage 4. In looking back now, I am not sure why it was so shocking. I knew it was advanced but localized. I guess that’s where I had chosen to ignore the word “advanced”, just pretend it wasn’t there. And that, was Denial with a capital D.
A few days later, I saw the medical oncologist. He examined me and said, “It’s not as bad as I thought. The tumour is large but I can move it around”. He did not mention a stage and never did throughout my treatment. It wasn’t until I was all done that I even realized that fact.
He did confirm that he would follow a systemic approach to my cancer treatment and start with neoadjuvant chemotherapy. I had no idea what the term “neoadjuvant” meant at the time but I knew I would be starting with chemo and that is exactly what it means, chemotherapy before the main treatment of surgery rather than after.
What followed was more waiting which meant more time to imagine the worst. It was a rather stressful Christmas that year. At long last, I started chemotherapy on December 29th. Both my sisters had arrived to provide emotional and logistical support. I remember coming home after that initial treatment and everyone watching me as though they were waiting for the other shoe to drop. And drop it did. The first 24 hours were great, I felt fine. So fine, that the next morning I went for a long walk with a friend and didn’t drink enough water. I got very dehydrated even though I knew better. I had been warned about dehydration. I was so nauseated and sick. My body ached all over. I could barely move. A nurse came out to the house and put me on an IV. It got better after that. You learn from experience.
I was on a clinical trial so I did 4 rounds of AC known as the red devil, and then another 4 rounds of Taxol in conjunction with Pazopanib pills. There were the typical side effects: hair loss including eyebrows and eyelashes, nausea, mouth sores, neuropathy, black nails, and so on. And then the not so typical: skyrocketing blood pressure from the Pazopanib. In the end, or should I say middle, they had to take me off the study early.
What I found most difficult though was how those powerful drugs coursing through my body made me feel.
It’s hard to put into words but I felt like I was not grounded. Sometimes, it felt like I was outside my body, as if looking down on myself, and not being in control. I really, REALLY did not like feeling that way. There was one particularly rough day when I actually said to myself, “I think it would be easier to be dead”. I know that sounds terrible. Please be assured, I never wanted to be dead, I just thought it would be easier.
That day, I caught a small glimpse, just a glimmer of understanding, of why people who suffer with mental illness sometimes go off their medication. I think they probably just want to feel like themselves again and not be living their life in a numb, fog-like, out of body way. I have told very few people about this, only those closest to me. I guess it’s because it’s difficult to explain and I feel like it’s not the norm. Maybe it is, we just don’t talk about it. We cancer survivors talk a lot about our experience, side effects, chemo brain, etc. but I have not met anyone yet who describes their experience like this. Is there anyone out there who can relate? It would be good to hear from you.
What helped me through this was a book by Jon Kabat-Zinn called Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. It was given to me by a dear friend’s husband and it came with a Mindfulness Meditation Practice CD. Many days I lay in bed and listened to the body scan meditation.
And before I even started chemo, I met a friend of a friend who had been through breast cancer. I wanted to hear about her experience firsthand. I wanted to know what to expect. She told me everyone reacts differently, everyone has their own experience, some better than others. Her one bit of advice which I carried with me the whole way through and I now pass on to others starting chemo, “Just remember you will get through it. It will come to an end”. And she was right.
One whole year after hearing my radiation oncologist say I was Stage 3, my medical oncologist told me it was Stage 2. Wow, so weird to hear that after the fact. Even now, I still think of it as Stage 3 because that was my belief through the whole experience. Would it have been better to know it was Stage 2? I still would have had the same treatment, the same side effects, the same outcome. Mentally and emotionally, would it have been easier?
…I’m not sure…perhaps. The truth is, after the initial shock, I didn’t think much about the stage. I just put my head down, took it one day at a time, and got through it.
Colleen at the end of her treatments with Dr. Verma, her Medical Oncologist
Colleen Kanna is a breast cancer champion and creator of coKANna designs, a line of bamboo knit, Canadian-made adaptive clothing for women touched by breast cancer.