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It All Started at The Drake Hotel is a five-part series chronicling one woman's cancer journey. Elizabeth gives us an uncut, uncensored version of her breast cancer story – and how food, family, friends and a little bit of Prosecco can go a long way.
After surgery on my spinal cord, the lymph node dissection seemed like a walk in the park. But a devastating pathology report was about to change everything – and give me a newfound sense of strength.
Did you miss part four? Click here to read.
After finishing my last dance of chemotherapy, I was elated.
I met with my surgeon, David McCready, who informed me that my next surgery, an axillary lymph node dissection, had been scheduled four weeks following my last chemo treatment.
"No," I told him. "The chemo has slowed down the healing from my spinal cord surgery. I need to recover. I want eight weeks." He agreed. The lymph node surgery was scheduled eight weeks, to the date, from the last chemo treatment.
The other piece of the upcoming surgery was to remove more tissue from my left breast, because one of the margins was less than the standard minimum of one millimeter.
'I like my breasts just as they are'
I must give David credit, because I requested three consultations with him before the November surgery. In our third meeting, I withdrew my consent for further breast surgery. "I like my breasts just as they are. No more body modification for me."
David protested. "You're focusing on small differences. Your breasts are fine."
"Actually, I think my breasts are spectacular."
David and his fellow both laughed, but I insisted. No more breast surgery.
I spent those weeks resting—a lot—and spending time with friends and family, and dating.
Fortunately for me, bald chicks with cancer are in now. Go figure! Honestly, I couldn't walk into an espresso bar or a grocery store without a guy striking up a conversation with me.
I was suspicious at first, but I was also regularly complimented by women on the shape of my head.
In September, Emily left Toronto for the start of her Masters in Family Medicine at McGill University. I had separation anxiety when she left, but she called and visited often.
Solomon, a 17-year-old genius and gifted musician, took up the role of caregiver, and did (and still does) a bang-up job! He actually asks "Can I do anything for you?" before he goes up to his room or out with friends.
He doesn't like to talk about his feelings, but he plays guitar and composes music for several hours a day. His vice principal told me that he's expressing himself through music.
For the lymph node surgery, Emily came from Montreal, and my father came from New York. My son, Solomon, and Emily's dad, Stephen Parkinson, were there, too. My brother, an infectious disease specialist, was on call.
I was so used to the routine that I was probably the calmest person in the group. Again I wrote a message on my right (unaffected) breast to the surgical team with a pink sharpie: "Not even a movie?"
I was allowed to listen to music from my iPhone as I was put under anesthesia. When a nurse removed my earbuds, my surgeon, David McCready saw that it was playing "Fix You" by Coldplay. He told the nurse to put it on the speakers, and they listened to my entire "OR Playlist." On some subconscious level, I'm sure it helped.
After surgery on my spinal cord, the lymph node dissection seemed like a walk in the park.
The steroids I was given to manage the anticipated nausea of chemo led me to put on 16 pounds, more than 10 per cent of my body weight. I was bald and freaky and so very tired of being a patient. When was this going to end?
Two weeks after the surgery, I had an appointment with David. I had been checking for the pathology report on the patient portal, Infowell, where patients can pick up reports and results, but the results weren't available until that morning.
There was no way I could have prepared myself for this report.
I hadn't asked a friend to come with me to the appointment. Big mistake. As I walked from the car to the hospital, I started making calls and sending texts to friends, "Bad news. I shouldn't be alone. Can you come to the Princess Margaret?" I couldn't reach anyone. I left messages.
The breast surgery fellow met with me first. After a few pieces of information, which I didn't even hear, he mentioned the pathology report.
"So the chemo didn't work, right?"
"Have you spoken to someone already?" he asked, surprised.
"I got my results online this morning."
Not only was every node but one positive, but there was "extensive extranodal extension," cancer throughout the tissue, outside of the lymph nodes, and a random piece of "unidentified" fibrous adipose tissue that also tested positive.
It was like a Carcinoma Festival, with an open bar.
"What was the point of all that chemo?" I asked.
"It would have been worse if you hadn't had it."
He could tell I was freaked out. He left to get David, during which time my dear friend Steve Roy called me back. "I'm jumping in a cab."
David came in, with the fellow. He agreed that the chemo probably kept the cancer from spreading to distant organs.
I was beside myself.
"What percentage of your patients have pathology like mine post chemo?"
It seemed like a simple enough question, and yet, it went unanswered, until I pushed. "How many cases do you see like this?"
The answer was, "Not many."
Both he and the fellow insisted that they have seen patients with the same disease live as long as 10 years, or longer. There was no reason to think that I wouldn't live another 10 years.
But I knew the patients they were referring to were the outliers.
Steve arrived at the end of the appointment. I introduced everyone before David and his fellow left.
I repeated what David had said, that other patients of his have lived 10 years.
Steve just looked at me and asked, "Seriously, are you trying to make
me feel better?"
I fell into his arms. "Go ahead and cry," he said, holding me. I so rarely do.
He then treated me to lunch a nearby Italian restaurant, with Prosecco, and back to his condo for more.
The pathology report was hard news for me to deliver and for my loved ones to receive. It seemed that every time I went to the hospital, I got more bad news.
It occurred to me that maybe I should just stay out of the hospital.
Solomon continued to keep his feelings to himself. I told him it's not healthy to keep everything in. "You never talk about how you're feeling."
"Neither do you," he replied. He was right.
When he came home from school the following day, I asked him if we could talk for a few minutes. We sat down in the living room.
"You said I never talked about my feelings. Well, this is how I feel right now: [bleep bleep bleep]. "I did everything I was supposed to. I did the chemo. I exercised. I ate all the right foods. I meditated every day and practiced yoga. And it didn't work!"
"It's seriously !&$!@-ed," he said, and added, ."It really sucks." It was a start.
There simply is no silver bullet, as we all know. It's a crap shoot! But consider this: patients who are depressed by their diagnosis—and all that goes with it—tend to survive fewer years than those with a positive outlook.
Back to basics: taking care of my mental health
After a solid week of reading abstracts on Scholar Google, I was jolted back to the Health Promoting Hospitals conference in Gothenburg, Sweden back in the summer. What did I learn? Psychoneuroimmunology, the impact of mental health status on the immune response. My best chance at surviving, as long as possible, is within my control: I need to take care of my mental health.
And back to my original experiment. I started a blog,
The Mental Breast to document my experience and my quest to improve my psychological health. I started attending classes to feed my soul: meditation, yoga, dance, music. I spent time with people I love and doing things I enjoy. I radically changed my diet to inhibit cancer cell growth.
I also realized that I had to minimize my stress, or at least my response to it, and that included my response to my pathology report.
I led a healthy lifestyle before my diagnosis, but after the pathology report I got serious. I started seeing two Traditional Chinese Medicine practitioners, Angela Warburton and David Bray, and a naturopath, David Dennis, in addition to my psychotherapist, Barbara Brown, two lymphedema specialists, Lisa Chau and Pamela Hammond, my myofascial massage therapist, Carla Jenson, and my cervical spine rehabilitation physiotherapist, Aaron Stewart.
I continued to exercise five to six days each week. Exercise is mental and physical therapy. I think my commitment to be active had a lot to do with my good mental state.
Regularly I reminded myself,
The problem isn't the cancer. The problem is my immune system.
A new chapter for Elizabeth
I was overjoyed to learn that Pamela Catton was my radiation oncologist. She used to head up the Radiation Medicine program and is the founder of the Survivorship Clinic. She is also very patient-centred and was respectful enough to be honest with me about the pathology report. It was indeed a rare, and unexpected, outcome.
Compared with chemotherapy or any of the surgeries, radiation therapy was a breeze, albeit tedious. Monday to Friday for six weeks. And somewhat scary, considering what was actually happening to my body. But the radiation therapists were exceptionally caring and supportive. A remarkable team!
I kept calm by listening to my own tunes during the treatments, and singing along.
An unscheduled mammogram in the middle of my radiation treatment revealed a cluster of microcalcifications (an early sign of breast cancer) by the original tumour site. A biopsy was recommended, or an MRI then a biopsy. I said neither. I'll wait until the radiation is over and cleared from my system.
I continued to focus on feeding my soul with joyful experiences.
When my treatment was over, the recovery period began. I was a wreck. My gastrointestinal system had shut down entirely. The chemo fog, a cognitive deficit that is a common side effect, made it hard for me to function, and drove my kids to frustration. I had no short term memory. I was like Guy Pearce's character in the film
Memento, without the Polaroid camera.
With my numb legs and feet, I fell regularly, including down a flight of stairs (five times!). The beauty of peripheral neuropathy, however, is that you don't feel the pain. Every time I fell, I got right up and said, "Wow, I can't believe I didn't hurt myself," only to discover a massive hematoma on my butt or a missing toenail later.
One of the hardest parts of treatment and recovery is accepting the current state, to learn to have patience with yourself. I so wanted to be, and feel, the way I used to: confident, clever, active and in control. Yet I was a mere shadow of my former self. I had to learn to love that shadow.
Emily came back to Toronto as soon as her term was over.
The June mammogram
My next mammogram was on June 4. I asked that the appointment for the results be delayed until Solomon's final exams were over. I didn't want to risk more bad news, which would certainly affect his ability to concentrate.
On Sunday, June 22, one day before the appointment we were all dreading, I logged into the patient portal, InfoWell.
I had to read the report several times:
The breasts show scattered fibroglandular densities. There are no dominant nodules or suspicious calcifications seen in either breast. IMPRESSION: No evidence of malignancy. Routine follow-up is recommended.
Emily and Solomon were both home, and I asked them to come downstairs.
"My mammogram is clear." I showed them the report.
It took them a few moments for it to sink in. And when it did, we were all crying, and we held each other and cried and cried and cried with relief. We skyped my Dad, in the middle of a golf game, and he cried. I sent an email to the entire family.
The next day at the Breast Clinic, my surgeon, David McCready, confirmed the results. It was the most wonderful news ever. My next mammogram is in one year.
Now I understand that feeding my soul has to become a way of life. Not only will it improve my outcomes, but it will ensure that the time I have on this earth will be fulfilling and meaningful.
My life before diagnosis was rich and full—and continues to be. My breast cancer diagnosis didn't prevent me from being grateful for everything else in my life.
I don't believe things happen for a reason. Things just happen. However, they happen more often to people living with chronic stress.
Fully living means spending time with people I love, enjoying lovingly prepared food with others, and experiencing pleasurable things such as music, laughter, mindful sex, dancing, good books and films, and freshly steamed espresso drinks--in bed.
Since my diagnosis, I've cranked up the concept of fully living a few notches. In the words of Tom Cochrane: Life is a highway. I want to ride it all night long.
This experience led to some life lessons:
I'm so, so glad I didn't cancel the cruise or any of my other plans, because carrying forward in spite of cancer made me feel as though I was in control. And I had more fun than I imagined possible.
Mine is a case of love winning out. In addition to two outstanding medical teams at University Health Network, I give the credit to all of the amazing people in my life who care for me and inspired me to get through this. Without their love, support and healing wishes, I wouldn't be in the place I am now.
My family, my friends, and my partners and lovers (past and present) have my deepest gratitude.
My children and primary caregivers, Emily and Solomon, deserve special recognition for their strength, endurance and courage. I am lucky to be related to them.
I have a high risk of recurrence, it's true, but for now I'm "on parole," as my friend Dr. David Ingleby puts it.
How very sweet it is, to be on the other side.
*Special thanks to Elizabeth for sharing her story with such wit, elegance and candour.