The remarkable Kris Carr, Crazy Sexy Cancer documentary filmmaker, bestselling author, cancer ass-kicker and wellness advocate recommends that everyone with a cancer diagnosis to recruit a posse, a power team to provide guidance and emotional support through treatment and survivorship.
My family and family-of-friends have been doing just that.
However, in addition to my Power Team at Princess Margaret Cancer Centre–breast surgeon extraordinaire David McCready, the most genuine and competent medical oncologist Eitan Amir, and the infinitely compassionate radiation oncologist Pamela Catton, and at Toronto Western Hospital, the shining star of spinal cord tumours, Michael Fehlings–I recruited a team of alternative healthcare practitioners.
My PMCC team addresses my disease. The members of my Posse address my soul and manage the side effects of the treatments.
Debbie Honickman, Family Physician, Queen West Community Health Centre, 168 Bathurst Street (at Queen)
Although she is technically not an alternative care practitioner, Debbie Honickman practices medicine in an alternative–holistic–way. Debbie has been my family’s doctor for over 17 years. We all love her.
My respect for her increased exponentially when she asked my son, then 11 years old, if he had any girlfriends. He giggled and replied no. Her follow-up question: “Any boyfriends?” Solomon, surprised, again answered no. “Well,” Debbie said, “I don’t want to make any assumptions.” And there it was. A health professional has made it clear to him that it’s perfectly ok to love anyone he wants. In other words, she normalized sexual diversity for him. Hallelujah.
Debbie feels responsible for both physical and mental health, and always checks in. It was her advocacy that moved the neuro team to book my spinal cord surgery, after my limbs went numb, by sending me to Emergency. It was Debbie who told me I would need time to recover from treatment. And she still asks about my head and soul.
Debbie and I have the same birthday. She is older than me, but in much better shape. She and her husband are avid cyclists and they spend their holidays cycling in mountainous regions of France and Italy. She is a role model and an inspiration, both to me and my daughter, Emily, who will enter McGill Medical School in 2015.
Barbara Brown, Pyschotherapist, Private Practice and Queen West Community Health Centre, 168 Bathurst Street (at Queen)
When I first met Barbara, before my lymph node surgery, I was in bad shape. I saw her at her private clinic, knowing that I would only be able to see her once or twice because of my limited resources.
The upcoming surgery was to remove my lymph nodes and more breast tissue, because the margins surrounding the original breast tumour were too narrow. Much of my anxiety about the breast cancer diagnosis was around my sexuality, how I perceived myself, and how others perceived me, clothed and unclothed.
Barbara affirmed my concerns and fears as normal. While the majority of patients just “want it out” and will do whatever the doctor recommends, it’s perfectly legitimate to want to preserve myself, intact, even if it means living fewer years. She helped me to frame the conversation with my surgeon by letting him know that I understand the risks, and that most people just want to keep living, and asking him to join me in my goal of preserving my slightly modified self, just as I am.
To my great fortune, in December, the team at Queen West Community Health Centre, where Barbara works one day a week, agreed to accommodate me in Barbara’s very full schedule, where the service is covered. We worked together to define my goal, which was to become comfortable with uncertainty. Barbara also does body and energy work, and fear release work. Her care, openness and wisdom led me to a new, safe place.
Thanks to Barbara, I am comfortable with uncertainty and, like the Buddhists, acutely aware of the preciousness of life.
Pamela Hammond, Registered Massage Therapist and Certified in Manual Lymphatic Drainage, Spadina Bloor Massage Therapy Clinic, 572 Bloor Street West, Suite 202 (across from Honest Ed’s)
I met Pamela through the Lymphedema Clinic at Princess Margaret Cancer Centre. I had already been diagnosed with trunk lymphedema by a clinican. Pamela simultaneously provided lymphatic drainage therapy and counselling. She listened to my fears and concerns, she comforted me, she encouraged me. As she treated me, she taught me how to self-massage, which I would have to do daily.
I saw her once or twice more at the hospital before I started seeing her in her private clinic, where I get an hour instead of 30 minutes. Her technique incorporates European practice as well as kinesio taping.
On the last visit before I left on my Recovery Tour, Pamela gave me a gift: she said instead of charging me for the session, I should buy myself an amulet instead, something that would have meaning for me.
Because of Pam’s blessing, I’m convinced, I finally found a silver snake rink in an antique market, that fits perfectly. Both my daughter and I were born in the year of the snake on the Chinese zodiac, and I was diagnosed in 2013, the Year of the Snake, which was supposed to be a “power year” for me. I guess the power helped me survive a double diagnosis of breast cancer and a spinal cord tumour.
Susan Himel, Health Promotion Specialist and Knowledge Broker, Cancer Care Ontario
Aside from being a dear friend, Susan Himel is highly resourceful when it comes to cancer treatment and support, and she is very generous with her time. She informs of things I didn’t know I need, and tells me what questions I need to ask. She could be a professional patient advocate, but she is helping capacitate many more people in her role as a Knowledge Broker at Cancer Care Ontario.
I’m sure I have been leaning on Susan since shortly after my diagnosis. I have been feeding on her referrals to books, practitioners specializing in breast surgery patients and breast cancer resources on the web.
Lisa Chau, Registered Massage Therapist and Certified in Manual Lymphatic Drainage and Complex Decongestive Therapy, Toronto Physiotherapy, 741 Broadview Avenue (at Danforth)
Susan Himel recommended Lisa Chau, a lymphedema specialist, when I noticed the swelling in my back. Lisa’s and Pamela’s techniques are different enough that they complement each other. While I am usually quiet with Pamela (getting into a meditative zone), Lisa and I are often chatting, or laughing, through the treatment.
When Lisa asked me what my goal was, besides managing lymphedema, I told her I wanted to improve my immune system. She integrated moxibustion (or Moxa) into the treatments. It’s a plant formed into sticks that are placed on acupuncture points. She uses Moxa when she volunteers at centre for people with HIV. It’s a bit mysterious, but it smells nice. And hey, it can’t hurt.
In my third session with Lisa, I tentatively asked her if she thought my lymphedema was treatable. She answered confidently, “Absolutely!” And she was right. With daily self-massage, regular treatments and compression bras/garments, the swelling subsided.
Following a flight in the spring, I developed lymphedema in my left arm. I was anxious but with the help of professionals, it is now under control.
Angela Warburton, Traditional Chinese Medicine Practitioner and Registered Acupuncturist, Urban Wellness, 489 College Street, Suite 301 (College and Bathurst)
Angela was another referral from Susan Himel, who got Angela’s information from Lisa Chau. Angela studied integrative cancer care, and Urban Wellness is a one-stop shop for healing. They even have free group meditation on Fridays at noon.
The clinic is lovely and serene, with high ceilings and soft, warm colours. Lots of natural light.
Angela’s consultations are long and thorough, covering every aspect of my health: diet, exercise, social support, mental health, sources of strength. She has helped me to reframe things, for example, my daily massage routine. I told her that having to massage my upper body and arm, to stay on top of my lymphedema, and the scar tissue, was a daily reminder of my diagnosis that I was becoming resentful of. Angela suggested I look at it another way. “Try to think of this act of self-care as a loving touch.” It took a while, but I eventually adopted this attitude and, as a result, I’m generating positive energy when I do this.
She also told me that my afternoon nap should be the one appointment with myself that doesn’t get cancelled.
David Dennis, Naturopathic Doctor, Urban Wellness, Urban Wellness, 489 College Street, Suite 301 (College and Bathurst)
After I entered the beautiful place known as Remission, I decided to get proactive and try Vitamin C Infusion Therapy: 50,000 mg of ascorbic acid through IV, twice a week for three months. An aggressive protocol to get me started.
There is a lot of controversy about this therapy. There is no way to patent Vitamin C, so there is no motivation for drug companies to invest millions in clinical trials. According to the American Cancer Society, there is evidence to support the theory that intravenous Vitamin C helps create an alkaline environment which discourages cancer cell growth. And yet. There is enough anecdotal evidence, from people I know, that convinced me to try it. Howie Simon (see below) is on the side of the ACS, but he admits that it can’t hurt me.
So, what the hell.
When we started, David used the left arm, because the most of the veins in my right arm had sclerosed during chemotherapy. After four or five sessions, I withdrew, fearing the 600 ml of fluid into my left arm might result in a flare up of lymphedema. After a month or so, I went back to David and asked if we can try the right arm. It’s not easy, but I’m moving forward, hoping it will reduce my risk of recurrence.
David also teaches and leads meditation classes outside of Urban Wellness.
Aaron Stewart, Registered Physiotherapist, MSc, MScPT, Cornerstone Physiotherapy, 2 Carlton Street, Suite 1800 (at Yonge)
Aaron, who also spells her name Erin, is the best rehabilitation physiotherapist I have worked with. She identified my challenges and worked with me to identify my goals, which were reducing pain, increasing strength in my shoulders, in order to support my over-strained neck and trapezius muscles, and maximize rotation of my neck. Since the first three vertebrae are fused with hardware, I will never regain full rotation. But I wanted to be able to drive and ride my bike again.
Aaron’s approach is specific and scientific, explaining as she works. She works on mobilizing the lower, unfused cervical vertebrae. When she introduces new exercises, she sends me a follow-up email describing them.
It was Aaron that identified left-sided weakness in my left abductor muscles. She referred me back to my neurosurgeon for testing.
Between visits, I do my exercises assigned to me, as I am able. It’s hard work. It hurts sometimes. And if I do the neck exercises in the gym instead of at home, it looks weird. But it’s working.
Carla Jensen, Registered Massage Therapist specializing in Myofascial Release, Harbord Health Centre, 100 Harbord Street (west of Spadina)
Susan Himel also recommended me to Carla Jensen, who specializes in myofascial massage, defined in Wikipedia as “ a soft tissue therapy for the treatment of skeletal muscle immobility and pain.” It is especially useful for breaking down scar tissue beneath the skin, where adhesions often form and limit range of motion or circulation or both.
“Women are usually repulsed by their breast scars,” Susan had told me. So true! I went wild on the scar on my neck after the spinal cord surgery, massaging it twice a day with silicon gel, the best treatment available. But not my breast. It was and still is difficult for me to even look at my affected breast. Yes, David did an awesome job, but this was no longer a familiar part of my body.
I saw Carla twice before my lymph node surgery, and prioritizing appropriately, she chose to work on my lower cervical spine and my problem left shoulder, weakened by the spinal cord surgery. Sometimes I experience pain with the treatment, but the results are the proof of the pudding. My neck rotation has definitely increased. And she taught me a variation of the neck exercises I had been doing, to get more reach.
Since the spring, she has been working on the scars on my breast and under my arm, and I, too, finally became comfortable with self-massaging my scar tissue.
Very recently, she started working on the scar down my cervical spine, an area she couldn’t have touched even six months ago. It wasn’t just that we needed time to heal from surgery. There was a lot of fear embedded in that area.
“We hold things in our body where they can’t be touched,” Carla told me.
I wonder what other emotions I might be holding, hiding in my body.
Ryan Hayes, Registered Massage Therapist, Toronto Healing Arts Centre, 715 Bloor Street West (at Christie)
I’ve been seeing Ryan since 2006, when he was at Sutherland Chan.
He practices integrated massage therapy, incorporating elements of craniosacral massage, osteopathy, Reiki and other techniques. You can find traditional Swedish anywhere. What Ryan offers is another level of body treatment.
Coincidentally, I recently had dinner with two people who were also clients of Ryan’s. We were all in agreement that he is truly remarkable.
Harriet Wichin, Assistant Executive Director and Director of the Community Choir, Miles Nadal Jewish Community Centre, 750 Spadina Avenue (at Bloor)
While Harriet is not an alternative healthcare practitioner, she is a healer. Harriet has directed the Community Choir at the MNJCC for 17 years. This is my fourth year with the large, audition choir. There is a waiting list made up of people who passed the audition. It’s that good.
The choir is so special because Harriet is so special. She is a gifted conductor, feeding us inspiration and drawing out beautiful song from our often weary souls. We love her metaphors and analogies. She makes us laugh. Choir is a combination of yoga and therapy. The choristers, themselves, are an exceptional group of people. At any given time, a number of us are suffering—a loss, a diagnosis, a death—and everyone is there to rally with offers of help, or just to listen.
When I was diagnosed in March, a couple of months before the 2013, I withdrew from the choir. It would not be possible for me to sing in the concert, but I attended a dress rehearsal and cried throughout. Harriet turns hay into gold, and sitting in the audience, it was the first time I could truly appreciate it.
During the summer of my chemotherapy and spinal cord surgery, I was working out daily at the gym in Trinity Bellwoods Park. A bit grotty, but cheap. In September, Harriet gave me a pile of guest passes for the beautiful gym at the MNJCC, complete with state of the art equipment, yoga classes, and a Jacuzzi, sauna and steam room. It was like heaven. “Let me know when you run out, I’ve got plenty.”
And just like that, I transitioned to the MNJCC gym community, a welcoming and safe space. I could walk around the women’s locker rooms with a towel around my waist, with my slightly deformed left boob, and no one cared. I felt, and still feel, completely comfortable.
Howie Simon, Researcher of Alternative and Experimental Cancer Treatments, North Toronto
I was introduced to Howie by my dear friend, Rosemary Frei. After my lymph node surgery results came in, I was freaking. Rosemary said I should talk to Howie.
I sent Howie my pathology report and he wrote back, suggesting I ask for further tests on my tissue. These were not available at Princess Margaret, unfortunately.
Eventually, we met in a cafe near Bloor and Spadina. He explained, or tried to explain, cancer at the cellular level. He drew pictures. He even called an immunologist, whom he considered to be the best in the world, during lunch. The immunologist lives and works in Tel Aviv.
Howie has been a great help and friend to me over the last 10 months. He knows who is doing what in all types of cancer: new drugs, clinical trials, experimental therapies. I ask questions. I try to understand.
At one of our first meetings, he named a couple of researchers and told me about their promising work. That’s how I connected with Paolo Lissoni.
Paolo Lissoni, Oncologist, San Gerardo Hospital, Monza, Milan, Italy
After reading several of Paolo’s articles on breast cancer research, I started taking 10 mg of melatonin. Since contact information of the principal investigator is available, I figured, what the hell? So I emailed him my pathology reports, a brief summary of my history, and I asked if I was eligible for Interleukin-2 therapy, used for malignant melanoma and renal cell cancers. And I waited for a response.
A week later, after I had given up waiting, the imminent and prolific neuroendoimmunologist (who also holds a Ph.D. in Theology and has published books on everything from cancer to the split of the church to sexual spirituality to human rights) responded to my message. No, I was not eligible for IL-2 therapy, as it is not approved for breast cancer patients. But I didn’t need it, he said. All I had to do was take 20 mg of melatonin every night and 500 mg of honokiol, an extract of magnolia, each morning, without interruption, for at least one year. I started immediately.
He also encouraged me to write to him about anything at all. So I sent him a link to The Mental Breast, and he sent me an article he wrote that affirmed I was on the right path: conditioning my immune system by focusing on joy and pleasure. In other words, stimulating and supporting the pineal gland and suppressing the nasty hormones released by the adrenal gland, namely cortisol, the stress hormone.
I had the honour of dining with Paolo in April of this year. We spoke in Italian and English, as we were able; not just about my case, but about research ethics boards, the survival of the human race, and the path to world peace. No leukocyte trafficking for me, as sexy as it sounds. He firmly believes in psychoneuroimmunology. I’m already on it.