Thursday, January 29, 2015

The Healing Circle Book Chapter Blog: Before the Beginning

Join us by reading one chapter per week of our book The Healing Circle which includes inspiring true stories and teaching from the ‘Skills for Healing’ Cancer Weekend Retreats. Each week we will post the next chapter of our book, links to related video, and a blog about the chapter. Learn about recent scientific advances in the body-mind-spirit connection, updates of the people featured in our book, and our reflections on each chapter. Read the whole book for free by accessing the previous blog posts. Please send us your comments and questions! Deep peace and healing,Rob Rutledge, MD and Timothy Walker, PhD

Read the introductory chapter: The Healing Circle – Before the Beginning Watch the Documentary: The Skills for Healing Retreat Documentary (45 minutes) This documentary follows the journey of five remarkable people through their experience of joining forty other cancer survivors and family members – all strangers during a cancer weekend support group. Watch their transformation, the power of new friendships, and the realization that the strength and wisdom they were seeking lay deep within each of them.

Blog by Dr. Rob Rutledge The sunlight is streaming through the window in my office at the Cancer Centre. I am sitting in silence with a dear friend, psychotherapist and teacher, Dr. Timothy Walker, who co-authored The Healing Circle with me. Tim and I are planning a day-long seminar for people affected by cancer. We close the door to a bustling clinic starting our planning session with five minutes of grounding meditation, and then setting an intention to create the best possible seminar.

Like I describe in the introduction to the Healing Circle (link above), something mysterious happens when Tim and I meld in meditation. Sometimes the feeling is peaceful and clear, and at other times, I am drawn deep into another dimension of our shared consciousness. But I am always energized and inspired to share the overwhelming love I feel in my heart with the world. I am also left feeling unsettled in some way. As an oncologist practicing conventional medicine, I waver between trying to be overly scientific (I can’t say anything my physician colleagues would disapprove of) and realizing there is a level of consciousness that we share which is both mysterious and powerful. I wonder ‘how can tapping into this level of spirit facilitate healing in the rest of our lives?’ This is a piece of life’s puzzle I hope to explore through this blog about our book, and other programs we’re producing at the Healing and Cancer Foundation.

With this blog, you’ll be able to read our book one chapter at a time over the next 42 weeks. In addition, we hope you enjoy learning more about the people featured in the book, their backgrounds and updates on their lives today, as well as how our perspective on healing may have changed since writing the book more than 5 years ago. We hope you’ll send your reflections and questions about the chapters or our reflections so we can keep the conversation going. Thank you for joining us. Blessings from Halifax.

Dr. Rob Rutledge is a Radiation Oncologist in Halifax, Nova Scotia, specializing in breast, prostate and pediatric cancers. He is also an Associate Professor in the Faculty of Medicine at Dalhousie University.

In 1999, Rob co-created the ‘Skills for Healing’ Cancer Weekend Retreats. These weekend support groups teach a powerful and integrated approach to the cancer diagnosis and ways to heal at levels of body, mind and spirit. To date, more than 1,600 people have attended the retreats in over 20 cities across Canada and abroad.

Rob also leads the Healing and Cancer Foundation, a Registered Charity, that freely offers educational videos, documentaries, and webcasting seminars – and he is co-author of a book called The Healing Circle, which captures the teachings and inspirational stories from the weekend retreats.

In 2010, Rob received Cancer Care Nova Scotia’s Award for Excellence in Patient Care and, in 2006 Doctors Nova Scotia presented him with the Health Promotion Award in recognition of his contribution to physician health and health promotion in cancer patients.

Blog by Dr. Timothy Walker Thinking back to when Rob and I first met in 1998 there was a strong energy of excitement and an open sky of possibilities. I had been working for years to bring mindfulness into healthcare, often meeting a lot of blank stares from many people in the medical establishment. With Rob, here was a physician that truly bridged both worlds; he had an open mind and really understood the power of helping people to empower themselves from the inside out on their cancer journey. Right from the beginning we integrated meditation and the prayerful intentions of loving-kindness and healing into each of our planning meetings. Enjoying this peaceful and powerful time of simple presence and healing intentions set the tone for everything we were doing. A powerful moment for me came just before the first retreat in 1999. We were both feeling nervous about the success of our bold plan. Would it really help people in the way that they needed? Would they be open to it? Were we up to the task of presenting our program to them in a way that would inspire and empower them? With all of this coursing through our minds we stopped early on that Friday afternoon before the retreat began, to take the time to go over each participant’s diagnosis and review some of their story as presented on their registration form. Then we held the whole group in our hearts, contemplating their suffering, and sending them a prayer for healing. There were logistical details of the audio, power point presentations, security for the building, catering and many other last minute details to look after. But taking that time to contemplate each person’s unique struggle and send them our deepest healing intentions felt to me like a breakthrough in integrating the practical and the visionary. Since then Rob and I have continued sending our healing intentions even from the first moment that we book a retreat.

Timothy Walker Ph.D. is a mindfulness teacher and psychotherapist living in Halifax Nova Scotia with over 30 years experience integrating mindfulness into counselling, education and healthcare. He is co-author of the The Healing Circle: integrating science, wisdom and compassion in reclaiming wholeness on the cancer journey and co-founded with Dr Rob Rutledge the Healing and Cancer Foundation. He designed and has taught with Dr. Rutledge the Skills for Healing Weekend Retreats for people living with cancer and their family members 42 times since 1999 in 20 cities across North America touching the lives of more than 1600 people. He has taught at Dalhousie University, Acadia University, and Mount St. Vincent University as well as hundreds of workshops, seminars and retreats Internationally. In his private practice, The Healing Circle, Timothy sees individuals, couples and families and welcomes distant consultations.

Tuesday, January 20, 2015

Cancer Narratives: Cracks and Raw Edges

Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives (click here to learn more about narratives) that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about Depression.

by Anne Marie Cerato, CKN Young Adult Co-Editor, Living with Cancer

I have cracks and they are starting to show. Actually I’m crumbling. I tried an experiment, it failed. Or maybe it was a raging success, because I’ve come to the grim realization that for the rest of my life I will depend on anti-depressants to regulate my mood. I suppose that you should be careful what you wish for, because you just might get it.

I wanted to see how I would fare weaning myself off of my meds just to see what it would be like to feel normal. Maybe I’d be happy and satisfied and in control of my emotions, because for 4 years I’ve felt numb. It felt like I wasn’t experiencing my life as fully as I should. I missed the raw edges because I wasn’t sure if what I was feeling was as intense as it should be. I was sad and happy but never “really happy” or “really sad”, which is why I suppose I began taking meds in the first place. The highs and lows were just so intense that I was a walking minefield.

Afterwards though I was even keel, but dulled somehow, at least I felt like I was dulled. So I thought could it hurt?

It’s been almost a month and I’m feeling. Feeling angry and bitter, sad and depressed. I actually hate myself right now. I don’t like wallowing in self-pity, but that’s exactly what I’ve been doing. I want to curl up into a ball and sleep. I want the world to go away and just leave me alone. I hate feeling this way! I hate that I can’t be happy for others without feeling sorry for myself. I hate thinking that my life has been a series of tragedies that I just happen to scrape through. I hate thinking that I should be happy because I’m alive. I hate not getting what I want, what I’ve worked hard for. I hate self-pity!

So on Monday I will fill my prescription again and hope that the edges will become dulled so I can be the person I was a month ago before this brainchild of mine, before I became myself. I will become comfortably numb like the song says and I will feel…less. I won’t hate myself so much, and I’ll go on. I just wish I didn’t need pills to keep me from being me, a me who apparently is bitter and angry even if I am grateful to be alive, because sometimes even that isn’t enough.

Anne Marie is a 36 year old lung cancer survivor. Originally diagnosed at the age of 30, she put her career as an educator on hold for treatment. After experiencing a recurrence at 32 she was forced to face what it meant to be incurable. Since then, she has become a patient advocate for both the young adult and lung cancer communities. She has spoken internationally about her experience as a young adult living with lung cancer in the hopes of changing the public’s perception of the disease. Anne Marie currently volunteers as a peer supporter and is a sitting board member of Lung Cancer Canada. “My goal as CKN’s Young Adult Editor is to represent the whole cancer experience and the range of challenges young adults face at all stages of the cancer journey, from diagnosis to remission to end of life.”

A note from Dr. Rob Rutledge, MD, FRCPC

Dear Cracked and Raw,

Thank you for your bravery. Thank you for your authenticity. Thank you for offering something real.

So many thoughts at once.

Firstly, I’m energized by the truth in this piece – something we don’t hear often. We walk around with masks on, pretending we’re fine – when, in fact, most of us are hurting. One of the benefits of the cancer weekend retreats (or any support group) is that people feel a lot less isolated and lonely when they hear others speak their truth. Suddenly, it’s not just me suffering through depression or anxiety or fear or awfulness – it’s lots of other people. If we extend the idea further we realize that it is part of the human journey. We can see it as a pattern – so we don’t need to take it so personally. The feeling of ‘my pain’ turns to ‘the pain’. Somehow that can lessen the sting as we begin to see ourselves as if from above.

Secondly, the Leonard Cohen quote comes to mind: “There is a crack in everything, that’s how the light gets in”. My heart swells somehow when I think about this idea that we are all perfectly imperfect. On the retreats we teach about ‘our already existing wholeness’ -and this wholeness contains every aspect of our personality. We are whole already – whether or not we take meds to balance our chemicals in our brains.

Lastly, I don’t see it as any type of failure to take medication to control mood. In fact, I think it shows great courage and insight to go to your Doc to have the discussion. Look at the pros and cons when deciding to take an anti-depressant. Try going on and coming off. Figure out what works for you – and keep experimenting – keep learning. Life will change again (that’s the only constant). Bless you for working at it – trying to figure it out.

I hope your piece is an inspiration for others to continue on their healing journey – which includes seeking professional help.

Thanks again C+R for being real.

Dr. Rob Rutledge

Cancer Narratives: The Danger of Denial

Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives (click here to learn more about narratives) that will improve the quality of life for patients and offer deeper understanding and connection for physicians. Please join this Doctor-Patient conversation about the Dangers of Denial

by Melinda Marchiano

Walking to my second class of the day, I see a friend across campus and quickly veer to take an alternate route. It’s that time of the day—the time when I’d be dishonest about how well I’m doing, the time where I simply don’t feel well enough to talk to people. I haven’t decided which feels worse, avoiding people I genuinely care about, or saying hello and only drawing more attention to the frustrating fact that I don’t have enough in me to give them what I truly desire to. These moments always seem to be a lose-lose situation. Sometimes, I figure it best to choose the route of total honesty:

“I’m actually not feeling the best, but it’s ok.” To this they often inquire if I’m sick or getting sick, to which my reply is inevitably vague and confusing. “Um, well not really… but kinda.”

Do they know I had cancer? Do I tell them? I have to get to class soon and that might take a while. Plus, it might scare them. Is it even late effects making me sick? Should I see a doctor? I don’t know. I don’t know what’s what anymore—what I just have to “deal with” and what can be helped by a doctor. I most often walk away feeling as though a chaotic flurry of physical distraction hindered true representation of me or my care for them.

I assume that this frequent “non-illness sickness” is common among survivors. It seems that the overbearing physical trauma of one’s past cancer experience must be behind each bout of nausea or extreme fatigue. It’s hard to think otherwise, really, hard to know if those “normal” people walking around you are experiencing and “just dealing with” some of the same things. Maybe you’re a wimp. Maybe you actually are healthy. Maybe this is just life. I lost my gauge of “normal” long ago, months before diagnosis. The onset was slow and deceiving, degrading my memory of what it feels like to experience life through an energized body and mind. I can now only imagine what it’s like to not feel certain ways—to not have the incessant distraction of physical discomfort; to not awake fatigued each day, to not have the anxious voice in my mind saying, “but what if you don’t feel well?”.

Melinda Marchiano Photo Credit: Carlos Guana

Cancer has been my life’s greatest avenue of instruction. It has taught me the power, yet fragility, of the human body and spirit. It has demonstrated that even in tremendous suffering there is abundant beauty, joy, and laughter to be had. It has shown me how to look into the face of great difficulty and step in with a peaceful heart. However, it has also handed me a double-edged sword—it has taught me how to lie. In all of its unique, all-encompassing pain, cancer has taught me the deep intricacies of how to deceive both others and myself. I suppose it originates from denial—coping, a wonderful skill that allows one to maintain sanity amid what the mind would otherwise deem as impossible, terrifying, or simply, “the end”. But after the battle has been won, I believe it takes years of mental “reprogramming” to realize that you no longer have to deny. Instead, you now have the seemingly undeserved luxury of acknowledgment and even, seeking help.

Despite this, it is often easier to go on in a state of denial, to continue the now effortless and almost robotic act of telling yourself and others that everything’s ok, that you feel ok, and that you’re “doing great”. I believe this can lead to a lack of health proactivity among survivors. It is now seven years after I began my battle with cancer, and I am just now considering my lack of acknowledgement and consistent denial of health issues that, whether caused by late effects or not, could potentially be helped. While I do believe a small, healthy dose of denial now and then helps optimists like me to maintain a bit of their sunshine, I am now beginning to see the dangers of carrying the automatic coping skills of cancer forward in my life. However, I believe it is through this recognition of denial, the search for honesty to oneself, and consequent reaching out that we survivors can get help, know exactly what we have to just “deal with”, and reach our optimal quality of life post-cancer.

On December 18th, 2007, at age thirteen, Melinda Marchiano was diagnosed with Hodgkin lymphoma. Two days after Christmas, she began her first of four rounds of chemotherapy, followed by three weeks of daily radiation. When treatment ended, Melinda struggled with post-treatment effects; horrible digestive problems morphed into a life-threatening eating disorder that destroyed her physically, spiritually, and emotionally. During this time of recovery, she began writing her story in spiral notebooks.

In October, 2010, Melinda’s book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, was published. Her powerful book, which received the Benjamin Franklin Award- Bill Fisher Award for Best First Book, and IPPY Award- gives a one-of-a-kind perspective on childhood cancer. It is the real-life stories of childhood cancer survivors that give a face to statistics and spur action among individuals, communities, and our nation’s leaders.

Melinda regularly brings her message of hope to others as an inspirational speaker. During the summer of 2011, Melinda traveled over 7,000 miles, through 28 states, and visited 15 children’s hospitals. She named her trip Children’s Hospitals Hope Tour. The following summer of 2012, Make-A-Wish made Melinda’s wish of visiting children’s hospitals and bringing awareness for childhood cancer come true. This month-long journey, called Melinda’s Make-A-Wish Hope Tour, sought to bring hope and joy to pediatric cancer patients throughout the Western United States. Melinda visited patients, gave presentations at hospitals, and spoke with the media to raise awareness for childhood cancer.

Melinda gives generously of her time– out of her passion to help others fighting cancer. She hosted the influential childhood cancer documentary, The Truth 365, and speaks to help benefit numerous foundations, children’s hospitals, schools, churches, and community groups. Her focus has expanded to include advocating on Capitol Hill for more funding for childhood cancer research. For her tireless work in childhood cancer advocacy, Melinda received the “Hope Award” in 2013 from Arms Wide Open Childhood Cancer Foundation.

Currently a junior at Pepperdine University, Melinda is a Creative Writing major and is deeply involved with the university’s dance company as student director, choreographer, and performer in Dance in Flight: The Film. She is excited about her future plans to continue dancing, writing, and working to end childhood cancer. Melinda’s life mission has just begun…

A Note from Dr. Timothy Walker…

Wow! You have articulated so well in your piece this complex labrynth of feelings and inner struggles, I know to be all too familiar to so many people on the cancer journey. “What do I say to my friends and family when I’m torn up inside with worry that these current symptoms could be a relapse or signs of worsening late effects?” “How much do I say in a casual greeting to a friend while passing them on a busy day?” “Where do I draw the line or find the balance between the kind of healthy denial and stoic tolerance of physical discomfort that helps me to get on with life and the wisdom of seeking help to alleviate the problems that might have easy or even not so easy solutions?”

Awareness of these inner struggles is itself a kind of powerful medicine. Seeing the struggles in oneself, writing about it in a blog, sharing it with others gives voice to something that could otherwise be lost in the shadows of our busy minds. It is so true that denial can easily become a pattern that habitually repeats itself gradually blotting out more and more of our potential for self-empowerment and optimal wellbeing. Awareness, the opposite of denial, is like sunlight dispelling the shadows and will gradually uncover a powerful inner resource. When we humbly acknowledge our creeping denial we uncover innate intuitive wisdom, wisdom into ourselves, our wellbeing and our relationships.

I love your ruthless honesty on this path of self-inquiry and I love your sense of commitment to moving forward “through this recognition of denial”. Whether we acknowledge it or not the challenges of life with cancer, or as in your case life post-cancer, are the grinding stones honing the sharpness of our wisdom blade. In our weekend retreats for people living with cancer and their family members we are often reminded of the famous serenity prayer: “Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” Heightened self-awareness in the face of challenges hones our deep intuition that knows the difference. I believe we can all come back to our true heart of wisdom that knows. And we can also be kind to ourselves because sometimes a little denial is an appropriate tack on our forward journey, (like a sailboat heading into the wind) and sometimes a quick “I’m fine” to a passing colleague is a concise condensation of much that is actually true.

Wisdom has to do with being in tune with each situation, each moment as a totally unique arising, and therefore not relying on rules, should-s, musts, have-to-s or any of our old programming. When we can put to rest some of the extra suffering we cause ourselves by trying so hard to align ourselves with some kind of image of who we think we should be, we find that we have in fact always had this clarity of mind and heart. We already have this clarity that can see the difference between opportunities open to empowerment and the proactive ability to make a difference and those situations that are asking for our patient forbearance and acceptance. One man who has had several different cancers over a period of 30 years puts it simply this way. “My body tells me when I need to seek medical treatment and when it is something that I just need to play with until it changes into something else.”

This entry was posted in all, Living with Cancer, Young Adults and tagged cancer denial, melinda marchiano, timothy walker, young adult cancer. Bookmark the permalink.

2 Responses to Cancer Narratives: The Danger of Denial

John N Gavin says:

January 16, 2015 at 3:43 pm

Beautifully put as usual. We all deal with some if the same struggles I agree. We do put on a happy face many times even though we’re hurting inside. Whether it be physical pain or mental, it’s one of life’s challenges to walk the tightrope so to speak. Always know that you can vent on us at anytime. Sometimes in helping you with your pain, we are helping to ease our own
Love and hugz

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Ron Langley says:

January 16, 2015 at 8:48 pm

As a 4 year survivor of nonhodgkins’ lymphoma and CCL I can relate to a lot of feelings stated on this site. You don’t really want to tell people how you truly feel because you don’t want to have people thinking “it’s been long enough your in remission”. It makes one think everyone thinks I should be fine all the time. My wife says I don’t ever want to do anything and she knows I get tired out very easily and am not able to do a lot of what I used to do. At times I don’t know if it is after effects of treatments or something else. I just wish there was a way to have people understand that it is something that is always on your mind.

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