From me to you.

From December 2010- May 2011 it was-and had to be- all about me.

As I wrote my own story- you listened.

As I paved my own path- you guided.

As I fell down and got back up- you cheered.

Cancer left me with no choice. I had to take to survive, I had to take to live, I had to take to heal.

From a life of giving to a life of taking.

The paradigm had shifted- and I hated her for it.

Me. Me. Me-Calling on You. You. You.

For help-for support- for hope.

When I finished treatment, I was desperate to shift the focus from me to you.

I was sick of me. Sick of my own voice. Sick of my own story. Sick of sickness.

As space and time entered, my mind started to calm, and my body started to heal.

As I started to rebuild, there was an insatiable need to take what I had learned, to take what you had given me, and put it somewhere.

I needed to give.

How could my story, my narrative, my journey serve as the backdrop for giving to others?

It could no longer be about my twist- but had to be about yours.

In the last week- Twist Out Cancer has once again shifted.

We have seen bravery, resilience, love and support from all corners of the world.

We have seen survivors supporting survivors, strangers supporting strangers, loved ones connecting and creating in ways they never anticipated.

Slow and steady- we are building and growing- creating a community based on sharing and giving- from me to you.

Thank you to those that have contributed. Your participation means more than you will ever know.

 

Social Media- A Mechanism to Effectuate Real and Meaningful Change

The Chicago Tribune recently published an article titled “ Social Media a Godsend For Those with Rare Disease” which featured a Chicago area woman who retreated into cyberspace when diagnosed with a rare heart condition called SCAD- Spontaneous Coronary Artery Dissection.  Using the mouse as her guide, within a few moments, she was able to find support, encouragement and relevant information about her disease.

Now more than ever, individuals with rare diseases are finding the critical and necessary information and support to better manage illness.  When health care providers are unable to fulfill those needs, the web-based community ready and willing steps in.

In December 2010, I was diagnosed with a rare type of blood cancer called Gray Zone Lymphoma, a disease that has only been officially recognized since 2008, and affects less than 300 people in the United State.  As a result of the newness and rarity of this cancer, my doctors and team of specialists were unable to provide me with statistics that could provide further insight into my illness.

In this case, not only did the medical community have little information to offer about my disease, but the web-based community was unusually quiet. After many sleepless nights and hours spent scouring the internet, I was finally able to connect with 4 other “Gray Zoners” on Facebook.

The lack of research, statistics, and evidence-based practice related to my disease, led me to feel empowered to write my own story. Instead of becoming overwhelmed by the lack of viable information, I made the conscience decision to educate, inform, and raise awareness about this disease.  Social media in essence was my soapbox.

Throughout treatment I used various social media platforms to open up about my hopes and dreams and everything in between. I discussed the hardships and triumphs while undergoing various procedures, scans, and 720 hours of chemotherapy. I discussed fertility issues, relationships, and the complexities surrounding re-emerging into the world after enduring a year of profound sickness and isolation.

Nothing was off limits. There was no topic I wasn’t willing to discuss or share. And through sharing came increased vulnerability-and through increased vulnerability- the world opened up.

Upon completing treatment in May of 2011, I was determined to give back and in a big way. On June 3, 2012, also known as National Cancer Survivors Day, “Twist Out Cancer- a support community with a twist on cancer” was officially launched.

Twist Out Cancer (TOC) leverages social media to help survivors and their loved ones combat the feelings of isolation, loneliness, and helplessness that often accompany cancer diagnoses and treatment. TOC provides a forum through which anyone affected by cancer can share thoughts, experiences, stories, and insights, allowing for the exchange of ideas, encouragement, and wisdom from one community member to another.  Twist Out Cancer provides survivors and supporters with the necessary information and support that they may not be able to get through their health care providers.  It meets the need that I recognized early on, and creates a community of shared experiences and hope.

This past week I have had the opportunity and privilege to participate in the ROI Summit in Jerusalem which brings together 150 young social innovators from around the world. These selected ambassadors have been given a unique set of tools to help enable them to turn their innovative ideas into meaningful change.

Throughout the summit, social media has been the primary focus and mechanism to create community, establish strategic networks, and turn a vision into reality.  Over the last few days it has become apparent that while social media may be a tremendous resource for information and support, it also has the potential to create meaningful relationships characterized by sharing and reciprocity.

The power of social media is boundless. It not only has the ability to create psycho-social support for individuals with rare diseases and/or cancer, but it should be seen as the primary mechanism to repair the world.

While cancer may have been the catalyst for me to learn about and leverage social media, it is the ROI Community of change agents who are continuing to show me how our journeys may be different and unique but are inextricably linked and dependent upon each other. With social media as our means to connect- anything is possible.

 

 

Thank You Chubby.

It has been a year since I was tied up, strapped down, locked in.

A year since I finished treatment- a year since I tiptoed out of the shadows and into the sunlight -and a year since I left the hospital for what I hoped would be the very last time.

In the past year, I have chosen to experience the world in oscillating states of hyper-color. These moments are cherished, savored, and readily accessible.

These moments give me strength, provide guidance, and most importantly provide hope.

On Thursday May 10, 2012- one year after finishing treatment, we held a Twist Out Cancer fundraiser in Montreal – a city that I called home for nearly 7 years. In the last year this community nurtured and supported me in a way that I did not know was possible. With nearly 200 people in attendance- we were able to raise awareness and funds to help further Twist Out Cancer’s mission, and perhaps more importantly- I was finally able to say thank you.

As fate would have it- the same weekend Twist Out Cancer Touched Down in Montreal,- Chubby Checker planned to celebrate 50 years of the Twist.

This past Saturday night, at the Rialto Theatre, I took the stage with the man that helped inspire a movement- with the man that has been the focal point of my narrative-with the man that has helped show me that “life is not about waiting for the storm to pass but its about learning to dance in the rain.”

As we twisted- Cancer moved from center stage into the chorus.

As we twisted- the heaviness of the last year was lifted.

As we twisted- the pain that I endured softened.

Thank you Chubby for being a part of my past- but more importantly a part of my present and future.

Dancing with you was one of the best moments of my life.

You helped me find meaning in the suffering- and for that I am incredible grateful.

 

To My Seder Sisters

It has been a year.

A year since I was tied up, strapped down, locked in.

A year since I was on Floor 16, staring aimlessly at the lakefront path, hoping and praying that one day I would be able to move, bend, run and twist with the outside world.

A year since my parents and I quickly read through the Passover Seder, retelling the story of the Jews enslavement while in Egypt and eventual exodus into a land of freedom and hope.

From tied up to untied-from enslaved to set free- the Passover story in many ways is reflective of my journey with cancer.

As I sit down with family, friends and loved ones this holiday, may I remember what it was like to be enslaved by this disease, trapped in my own body, and tied up for year. May I remember what it was like to feel isolated and removed from the world around me, and what strategies I chose to implore in order to hold on to hope. And may I remember what freedom felt like and tasted like when I breathed in that first breath of fresh air after leaving the hospital for the very last time. May I remember what it was like to slowly tiptoe from the shadows into the light, from sickness into health, from enslavement into freedom.

And may I remember my life saving team that helped shepherd me into this new chapter.

I am forever grateful to you.

To my seder sisters.
[youtube=http://www.youtube.com/watch?v=HeHgiYdhGOE]

Ann

Meet Ann.

Ann and I first met at Birch Trail Camp for Girls located in Minong, Wisconsin. We were ten.  I remember Ann as a bright eyed, energetic, and talkative camper who appeared older and wiser than her age. Her energy was explosive.  Unlike Ann, I was painfully shy, timid, and terribly homesick. 

My interactions with Ann were limited. We were in different cabins, with a similar circle of friends.  Her and I exchanged a few hits during a competitive game of Biffer, which resulted in us being covered head to toe in flower and paste.

We were distant acquaintances nothing more.

This past December when I was diagnosed with Lymphoma, my fifth grade- far removed friend- reached out and slowly told me about her journey with Cancer.

Thanks to Facebook, Ann and I twenty years later were able to start a deep friendship that helped me get through my diagnosis, treatment and perhaps more importantly the months, days and moments thereafter.

Ann was my “unofficial angel”, my soul sister, my 9/11 call in the middle of the night when I was managing a new side effect, or when the fears of my mortality had become unbearable.

Ann was my voice of reason, the “your going to be ok, better than ok, and when you realize this I am going to tell you- I told you so.”

I asked Ann to share her “Twist on Cancer.” 

I share this with you because I think it is important that you know just how special Ann is.

Thank you Birch Trail, thank you Facebook, and perhaps thank you cancer for bringing us together.  I don’t know what I would do without you.

Meet Ann.

One will often hear cancer patients or survivors say that their diagnosis was the best thing that ever happened to them. While I wouldn’t say it quite so starkly, I will say that having cancer changed my perspective and my life for the better. It made me Grateful.
I pulled myself through my diagnosis, treatment and healing process by reminding myself, and others, every day, that if Hodgkin’s Lymphoma, 6 months of chemotherapy and its’ after-effects were the worst thing that ever happened to me, I continued to be one of the luckiest people I knew.
And I knew, I knew exactly how lucky I was – to be otherwise young and strong, to have great health insurance, to have my sister nearby and parents in the position to travel 1,300 miles every other week for my treatment, to have patient and adoring friends, and to have a disease classified as eminently treatable and most-likely curable – I was Grateful every day.
Yes, I cried when I was diagnosed. Yes, I cried when I lost my hair. Yes, I cried every day because I felt crappy, or had to go to another doctor, or was just plain scared. I wasn’t brave. I wanted my early-20s back. I didn’t want to worry. But every day, I counted up all of the things for which I was Grateful. The list was so long. Even now, 8 years later, I still do this.
Being Grateful when I was sick taught me to be Grateful now that I am well. My Twist on Cancer is an attitude of deep Gratitude.

Seeing All My Colors Beyond the Shade of Grey.

It has been quite a year. Less than I year ago I was in the beggining of my fight against cancer- unsure if I was going to make it to my 30th birthday. It was bald, underweight, and praying that my Pet Scan would show a reduction in the cancerous cells that had ravaged my body. I held my loved ones tight, I wrote, and I reached out to my world for love and support.
As I called to you- you answered me with open arms- open hearts- and you were there- ready to brace my fall.
During some of my most vulnerable moments you reminded me that I am stronger today than yesterday- but not as strong as I will be tomorrow.
A year ago I was desperatly holding on to moments, praying for more time, and trying to find meaning amongst all of the the suffering.

This saturday- March 3rd I am turning one.
One year of being in remission.
One year of seeing and living in hypercolor.
One year of living in a state of overwhelming gratitude.

When I finished treatment this past May and slowly tiptoed out of the shadows and into the real world- I found myself negotiating a lot of fears.
The further I moved away from the trauma- the more I started to rebuild- and the more I felt I had to lose.
I was constantly waiting for the ball to drop.

During this period of overwhelming what-if’s- I also wondered if I would ever find love again.
Would I ever meet someone that could see beyond my physical scars and the navigate their way through the scars that lay beneath.
Would I ever be able to meet someone that saw my cancer experience as a strength as opposed to a handicap?
Would I ever be able to meet someone that saw cancer as one piece of me- as opposed to all of me.

Well.
I met someone-and not just someone.
The person I was hoping to one day meet- happened to be there all along.
It took ten years of living in close proximity to one another for us to be able to see each other for who we really are.

I not only found someone that is able to see beyond the scars, and beyond cancer, but I found somone that appreciates all my quirks, my excentricity, and all the colors beyond the shade of grey.

My dear friend, soul sister, and fellow survivor Ann wrote ” With trauma comes perseverance, empathy, an open mind and most importantly an open heart.”

I wholeheartedly believe that my journey with cancer is what has brought me here- which is exactly where I am supposed to be.

As I approach my one year birthday- and I reflect on what it means to be tied up and untied, I am reminded the importance of holding on to hope, of dreaming big, and believing that miracles can and do happen.

Mindful Social Warriors: Gentle Yogasana, Pranayama and Meditation to Help Battle Cancer Related Stress

I met Becky in round one. She showed up at Hotel Prentice with bright eyes, a smile that extends for miles- and a purple lipstick in hand.

She had started reading my blog a few weeks before and she was taken with my latest entry that revealed my love affair with lipstick and my intention of wearing it during every round. 

I didn’t know Becky, but she felt that she knew me. It took very little time for that feeling to become mutual.

Becky took me on a journey through mindfulness, a journey through mediation, a journey through the mind-body connection.

She showed me how to slow down my breath, to clear my head, and to connect with a body that I no longer understood.

She taught me to honor and embrace what I was feeling-as well as to enter each round, each day, each moment with a renewed intention.

Becky became my guru, my confidant, my guide throughout last year’s twists and turns, triumphs and falls.

Becky is and continues to be a tremendous source of strength- and she serves as a constant reminder that I have the tool kit necessary to handle the most dire of circumstances.

Inhale one, two, three, four, five.

Exhale one, two, three, four, five, six.

Here is Becky’s academic review of our work together.

I think you will soon see that she is nothing short of remarkable. 

Mindful Social Warriors:

One MSW Student’s Approach to Using

Gentle Yogasana, Pranayama, and Meditation

to Help a Young Woman Battle Cancer-related Stress

Rebecca J. Strauss, Registered Yoga Teacher (RYT)

Masters in Social Work (MSW) Candidate, Matriculation – May 2012

Loyola University Chicago

2/10/12

ABSTRACT:  It is widely published that physical, psychological, and social stressors adversely affect many individuals who are diagnosed with cancer, influencing their experience of treatment and perhaps, their medical outcome. No one is prepared for this battle, yet most patients are forced to make split-second decisions that are critical to their care. This case study highlights the mindfulness approach taken by one Masters of Social Work (MSW) student/yoga teacher to help a young woman during her journey with Grey Zone Lymphoma.  By guiding her through gentle yoga postures, pranayama (yoga breathing), and meditation this patient learned how to regain some degree of control in managing her illness-related stress, and perhaps improve the quality of her life during treatment.  As more hospitals combine conventional treatments with complementary healing therapies, they provide tools any patient can use to instill hope and promote wellness during this most challenging time and beyond.

KEY WORDS:  cancer; onco-fertility; yoga; pranayama; meditation; complementary and alternative medicine.

INTRODUCTION

            Receiving a diagnosis of cancer can seem like stepping into active battle without any basic training.  The disease sneaks up on most individuals by way of a suspicious lump, night sweats, unexpected weight loss, headaches, or extreme fatigue that one assumes is due to working too hard or other life stressors.  No one is prepared for this battle, yet most patients are forced to make split-second decisions that are critical to their care.  Once the decisions are made, the treatment begins and the patient is faced with the need to accept, surrender to their circumstances, and fight for their life.  The world becomes their basic training, navigating responsibilities related to their health, their own perception of self as well as the perceptions of their family, friends, and work colleagues.

CANCER-RELATED STRESSORS

            Despite medical advancements, 12.2% of women born today will be diagnosed with breast cancer alone at some point in their life (National Institute of Health, 2010). At least 20% of patients continue to suffer severe distress for two years or more post-surgery, experiencing recurrent anxiety, depression, and somatic preoccupation (Spiegel, 1997).  Although traditional medicine has made tremendous progress in alleviating cancer-related stressors by minimizing treatment side effects and extending one’s life, prolonged stress can weaken the immune system, effectively reducing the body’s defenses against future tumors, bacteria, and other viral infections (Palmer, 2000).  Consequently, anything that can enhance a patient’s ability to minimize stress may have a positive effect on treatment outcome.

Cancer is a complicated diagnosis for any person, but for younger women, cancer treatment means surrendering to uncertainty in many significant areas of their life. Cancer-related stress results from a genuine loss of control over treatment procedures and scheduling, fear of death, physical side effects, issues related to dating and intimacy, and interruptions in career or family life. Young women feel victimized and vulnerable as hair loss chips away at their femininity.  They continue to experience body betrayal in extreme fatigue, mental fog, and permanent scarring. Chemotherapy compromises one’s immune system and often forces isolation, adding another layer to one’s grief over the loss of their former healthy and independent self.  As more young women fully recover from their respective cancer treatments, future fertility has become a very relevant issue in their long-term quality of life. Cancer therapies can have a profound impact on ovarian functioning, often reducing the window of reproductive opportunity (Stroud, Mutch, Rader, Powell, Thaker, & Grigsby, 2009). Almost immediately after diagnosis, critical decisions have to be made regarding fertility preservation yet logistical barriers and inadequate financial resources prevent timely patient referrals and coordination of such care, adding yet another layer of stress and anxiety to the illness (Woodruff, 2010).

The good news is that all is not lost. Perhaps the antidote to one’s healing is finding that internal space where one can regain some degree of control in their recovery.   With an acceptance of their diagnosis and an awareness of their body and mind, all patients can be partners in their healing, and reconnect with survival and a promising future. Young women with cancer have every reason to take such a proactive stance, as they are not only fighting for their life, but for the lives of their unborn children.  They are fighting for a future with their young families, their careers, their need to physically and mentally heal, and their need to redefine their perception of self in many areas of their life. As a social worker in the field of mental health, it is important to help our clients access this internal space that allows for healing, either on the emotional level through a more refined state of awareness, or on the physical level through the reduction of stress, or both.

YOGA AS A COMPLEMENTARY INTERVENTION

            Yoga is an ancient practice that encompasses various domains of physical and mindful experiences.  The practice of yoga includes ethical and moral disciplines, asanas (physical postures), breathing techniques, meditation, and the emphasis of uniting the mind and body for health and a more profound awareness of self (Smith & Pukall, 2009).  In the asana portion, each yoga posture is linked to the next one by a succession of transitional movements, synchronized with the inhalations and exhalations of one’s breath.  The union of mind and body then takes place with the breath acting as the harness (Ramaswami, 2005).  When one integrates yoga movement with the breath, the mind stops its obsessive thinking and begins to slow down.  It is an ideal way to preserve health and longevity in the body, regulate the nervous system, and allow the mind to withdraw inward towards relaxation (Raman, 1998).  A regular yoga practice does not free a person from stress but it may train the body to respond to stress differently.

Pranayama, or yoga breathing, has been repeatedly shown to be a valuable resource for people suffering from stress by directly addressing one’s physical and emotional body (Somerstein, 2010).  As breathing is intricately related to one’s nervous system, deep breathing and the lengthening of one’s breath not only improves lung capacity, but it slows down the heart rate and stimulates the relaxation response (Brown & Gerbard, 2005). Breathing is the only function of the autonomic nervous system that can be automatically and consciously controlled, effectively becoming a bridge between mind and body, and therefore a powerful mechanism in reducing stress (Somerstein, 2010).  For many individuals, breathing practices are often the most rapidly effective method to engage the relaxation response and balance the nervous system (Brown, Gerbard, Muskin, 2009).

The quieting of the mind also occurs in meditation, the practice of focusing the mind’s attention on either the sensation of one’s breathing, or a mantra, a sacred word or prayer that has special meaning (Iyengar, 1979).  The goal of meditation is to become aware of one’s thoughts or worries as they enter the mind, and learn to move through them without getting stuck.  This awareness allows one to harness distractions, without judgment, and bring attention back to the here and now.   The inward concentration of meditation trains the mind to focus on the present moment.  In doing so, meditation may help one develop greater capacity to accept, rather than be consumed by their illness.

In recent years, gentle yoga postures, pranayama, and meditation have received growing recognition as powerful tools in promoting one’s quality of life during and after cancer treatment.  Yoga-based approaches have very practical implications for individuals with cancer as they view the body as the gateway to the mind. These approaches prioritize making the connection at the somatic level first through a gentle asana practice, and subsequently move to the emotional and cognitive levels through deep breathing and meditation (Emerson & Hopper, 2011). They help to cultivate one’s ability to remain present and build a new connection with the self, especially when one’s perception of self is changed through illness.  They teach individuals to listen to their body and make accommodations when it needs a little extra help.

CLIENT HISTORY AND METHODOLOGY

            In this case study, the client was 29 years old, female, professionally engaged in the field of community activism, and enjoying a robust social life.  With one phone call from her doctor, confirming a diagnosis of Grey Zone Lymphoma, this client was frozen in fear and uncertainty.  Within days she had endured many tests to establish a preferred treatment regime.  Before treatment began however, and with great surrender, she met with onco-fertility specialists in order to preserve her future fertility. The unknown was almost too much to bear.

Warriors fight by nature and this young woman chose to be a warrior by being proactive and fighting the Grey Zone Lymphoma that invaded her body.  As a precautionary measure to ensure her safety, I requested that she get her doctor’s permission before we began our work together.  More specifically, she needed permission from her oncologist to breathe deeply, lift her arms up over her head, and perform gentle extensions and twists of the spine while in a standing or seated position.  I have been a registered yoga teacher (RYT) for four years, a practitioner of yoga and meditation for eight years. Within this framework, I began my therapeutic work combining my current Masters in Social Work training at Loyola University-Chicago, with my experience in teaching yoga and meditation, to help someone overcome their unique personal challenge in living.

Each session was structured with 10 minutes of pranayama, 20 minutes of gentle asana practice, 10 minutes of meditation, and 10 minutes of processing thoughts and feeling states.  Although the structure of each class was the same, the content varied depending on how the client was feeling at that particular moment. The pranayama technique of slow yoga breathing was chosen because of its ease of use and its ability to calm the nervous system (Bernardi, Porta, Spicuzza, & Sleight, 2005; Somerstein, 2010). The normal breathing rate for most individuals is about fifteen breaths per minute (Ramaswami, 2005).  For the purpose of this study, the rate of breathing was reduced considerably to six breaths per minute, or to a five second inhale, five second exhale, pace (Bernardi et al, 2005).  The asana portion consisted of a sequence of gentle postures taken from the Vinyasa Krama system, a style of yoga passed on by legendary teacher, Sri Krisnamacharya. This system encourages one to focus on the slow inward and outward movement of breath, while simultaneously performing simple movements of the arms and torso (Ramaswami, 2005).  At other times, we integrated simpler hand gestures or mudras with slow breathing, bringing awareness to the connection of the fingertips and the warmth that followed by pressing hands to the heart.

The meditation portion further encouraged the client’s awareness of her thoughts, fears, or concerns.  There were many conversations about feeling judged, either by herself or perceived judgment by others.  About half way through treatment, tests revealed that the client was cancer free.  This was such extraordinary news, met with joy from all her friends, family, and work colleagues.  But with that joy came an odd sense that she was supposed to be healed and ready to reenter normal life.  Nothing was farther from the truth.  Meditation provided a means to access that internal space in which she could observe her thoughts, rather than being consumed by them, accept her challenges rather than be a victim to them, and find a sense of control that she could harness in her battle to survive.

CLINICAL ADAPTATIONS

            Working with individuals with cancer requires flexibility in the clinician’s approach as sessions have to be altered in length or location to accommodate fatigue or other symptoms related to their illness (Spira & Kenemore, 2002).  In one situation, our plan was to conduct our session at her home, however blood tests showed that her immune counts were too low to have visitors.  I suggested that we connect via Skype, a real-time online interactive tool that allows individuals to meet virtually.  She agreed and we did our session seamlessly.  She was in her home, I was in my home, and neither of us felt as though anything was missing from the session, except for our final hug. Another adaptation occurred during one of our hospital sessions when the client’s energy was extremely depleted.  I asked if she would like to try doing, “yoga in the mind.”  She agreed and we proceeded to conduct our session while she was lying on her bed, eyes closed, covered up and as comfortable as possible.  As I verbally instructed the pranayama and asana portions of our session, she imagined doing everything in her mind at the same pace, same time.  The client engaged in the meditation and the final processing of thoughts and feelings and reported feeling stronger after the session, even though it was done without any observable movement on her part.

DISCUSSION

            As a graduate student in the field of clinical social work and an RYT, helping this client find her internal space where she could collect some measure of control during illness was very powerful to witness.  In the reflections portion of each session, emotions often surfaced as she would describe the release of tightness or stress that had been lodged in the area around her heart.  At times she would reflect on her surprise at how light she felt afterwards, as the numbing in her fingertips or heaviness in her arms seemed to be less obvious.  Other times she focused on how freeing it was to work through her personal challenges without judgment.  She reported that when waiting for test results, she would engage her secret weapon of slow, yoga breathing to reduce her anxious feelings and find a sense of calm.  When she found herself feeling out of control, she responded with silent meditation, as a means to harness her fears and strengthen her will to fight.

Traditional medicine treats the specific physical symptoms of one’s illness through various drug interventions, surgical procedures, and other therapeutic means.  Yoga is a more holistic system that optimizes every function of the body including the muscles, digestion, circulation, the immune system, and the nervous system in order to enhance physical and emotional well-being (McCall, 2007). Although the gifts of yoga are tangible, they are often more subtle and accessible only by experiencing the practice on some level. Elements of yoga, such as gentle postures, pranayama, and meditation are not just interventions, they are part of a philosophy that permeates one’s thinking over time.  This philosophical component requires one to develop a deeper sense of their body, breath, and mind. Through awareness, one may be able to cultivate his/her ability to act, instead of react under stressful circumstances, and may be in a better position to regain a sense of control during illness and other life challenges. The practice of yoga won’t change one’s diagnosis but it may reduce one’s reactivity to diagnosis, treatment, and resulting side effects. When offered in a slow and deliberate way, yoga interventions may calm the nervous system, quiet the mind, and allow the physical body to let go of stress and heal.

LIMITATIONS

            There are numerous limitations to this case study that prevent the findings from being generalized to larger populations.  All outcomes were based on self-reporting measures taken from a single case study. Although the positive psychological and physical effects of yoga interventions are noted, it is not clear which aspect of the intervention(s) may have been responsible for such improvements. Although the structure of each session was kept constant, the content of each session varied due to the patient’s health or other psychosocial stressors at that time, reducing yet another layer of reliability.  And unlike many other patients, the subject was physically fit prior to her diagnosis and very open to the idea of integrating mind and body for the purposes of her own health and recovery.  The subject also used many other tools to fight her disease, in addition to practicing mind/body interventions.  She actively engaged in her treatment options, published regularly in an online blog, gathered strength from her family, faith, and friends, and found meaning in reaching out to other cancer patients in need of support.  Although any medical or mental health practitioner can engage a client in slow breathing techniques, an additional limitation is that not every clinician is trained in the instruction of yoga and mindfulness meditation, a qualification that would be essential to offering this type of intervention.

CONCLUSION

            The mind/body interventions presented in this case were chosen specifically to help a young woman manage her cancer-related stress during chemotherapy. Additional research is needed to specify which cancer patients benefit from yoga interventions, given the various types of cancer and the different treatment protocols that patients face as a result of their diagnosis. Further research may be necessary to identify which aspects of these mind/body interventions lead to positive outcomes such as relaxation, stress reduction, increased coping skills, and acceptance.   The positive feedback reported by the patient in this case may indicate that aspects of a yoga practice, such as gentle asana, pranayama, and meditation may have future value as part of other clinical interventions.  As a clinical social worker in the field of mental health, future research may be pursued to support the possible link between yoga postures, pranayama, and/or meditative practices as a means to reduce stress (Brown & Gerbarg, 2005), manage anxiety (Somerstein, 2010), and mitigate effects of trauma (Emerson & Hopper, 2011).  By integrating holistic approaches that are intrinsic to the practice of yoga and mindfulness, perhaps we can provide our clients with tools to regain emotional and psychological control in their life, regardless of unexpected challenges.

After six months, the young woman in this case study is healthy and cancer free.  As originally feared, however, chemotherapy profoundly impacted her ovarian functioning, leading to premature menopause and loss of fertility.  But due to her diligence in seeking onco-fertility treatment prior to chemotherapy, this client will find her way to motherhood, perhaps through in vitro fertilization, surrogacy, or adoption.  With her gentle yogasana practice, yoga breathing, and meditation tools in place, it is certain that she will fight this pending battle with the power of a warrior and a young woman’s grace. It was truly an honor to combine the healing powers of yoga with my clinical social work training to help this individual regain a sense of control and promote her own wellness under such a challenging circumstance.

For more information on this young warrior’s efforts to help others fight cancer, please visit her website at http://twistoutcancer.org/ .

To contact Becky Strauss please email jenna@twistoutcancer.org

References:

American Cancer Society (2011). Cancer Facts & Figures. Retrieved on 11/26/11 from                         http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/            document/acspc-029771.pdf

Bernardi, L., Porta, C., Spicuzza, L., & Sleight, P. (2005). Cardiorespiratory interactions to external stimuli. Archives Italiennes de Biologie, 143: 215-221.

Brown, R., & Gerbarg, P. (2005). Sudarshan kriya yogic breathing in the treatment of stress, anxiety, and depression: Part I– neurophysiologic model. Journal of Alternative and Complementary Medicine, 11, 1: 189-201.

Brown, R., & Gerbarg, P. (2005). Sudarshan kriya yogic breathing in the treatment of stress, anxiety, and depression: Part II – clinical applications and guidelines. Journal of Alternative and Complementary Medicine, 11, 4: 711-717.

Brown R., Gerbarg, P., & Muskin, P. (2009). How to Use Herbs, Nutrients, and Yoga in             Mental             Health Care. New York: W.W. Norton & Company.

Emerson, D., & Hopper, E. (2011). Overcoming Trauma through Yoga. Berkeley, CA:             North             Atlantic Books.

Gerbarg, P. (2011). How Can Breathing Balance the Stress Response System?  Retrieved             from             http://www.haveahealthymind.com/articles/stress-response-system.html

Iyengar, B. (1979). Light on Yoga. New York: Schocken Books.

McCall, T. (2007). Yoga as Medicine: The Yogic Prescription for Health and Healing. New             York: Bantam Dell.

National Institute of Health. (2010). National Cancer Institute Fact Sheet. Retrieved from             http://www.cancer.gov/cancertopics/factsheet/detection/probability-breast-cancer

Palmer, S. (2000). Physiology of the stress response. Retrieved from Center for Stress             Management website at http://www.managingstress.com/articles/physiology.htm

Raman, K. (1998). A Matter of Health: Integration of Yoga and Western Medicine for             Prevention and Cure. Aminjikarai, Chennai: Westand Limited.

Ramaswami, S. (2005). The Complete Book of Vinyasa Yoga. New York: Marlowe &             Company.

Smith, K., & Pukall, C. (2009).  An evidence-based review of yoga as a complementary intervention for patients with cancer. Psycho-Oncology, 18, 465-475.

Somerstein, L. (2010). Together in a room to alleviate anxiety:  Yoga breathing and             psychotherapy. Procedia Social And Behavioral Sciences, 5, 267-271.

Spiegel, D. (1997). Psychosocial aspects of breast cancer treatment. Seminars in Oncology, 24, 1, S1/36 – S1/37.

Spira, M., & Kenemore, A. (2002). Cancer as a life transition: a relational approach to cancer wellness in women. Clinical Social Work Journal, 30, 2, 173-186

Stroud, J., Mutch, D., Rader, J., Powell, M, Thaker, P, & Grigsby, P. (2009).  Effects of cancer  treatment on ovarian function. Fertility and Sterility, 92, 2, 417-427.

Woodruff, T. (2010).  The oncofertility consortium-addressing fertility in young people with  cancer. Nature Reviews Clinical Oncology, 7, 8, , 466-475.

Tiny Twister Spotlight:Jonny Imerman, Founder of Imerman’s Angels

In the last year I have met some extraordinary Cancer survivors that all have their own unique “Twist on Cancer”.  Jonny Imerman is one of the most charismatic, dynamic, and inspirational survivors I have had the privilege of befriending.

Jonny is a 2x cancer survivor who started Imerman’s Angels, an organization that carefully matches a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers, such as spouses, parents, children, and friends, can also benefit from one-on-one connections with other caregivers and survivors. The service is free and available to anyone touched by any type of cancer, at any stage, any age, living anywhere in the world.

Pretty remarkable right?

Jonny is a force to be reckoned with! He has created a unique support system for survivors, caregivers and friends. He also has drawn considerable attention to the importance of devoting significant resources to delivering psychosocial support to those in need.

Jonny Imerman, not only showed me how to fight, but he has shown me how to live.  Jonny was at Hotel Prentice for the delivery of my first round of chemotherapy and he was there to celebrate with me as I was disconnected from the pump this past May. Jonny is not only my mentor and role model he is also a dear friend.

Check out Jonny’s “Twist on Cancer“.

My name is Jonny, I am a 2x young adult testicular cancer survivor and my TOC is a challenge that EACH and EVERY cancer survivor looks at their cancer experience with a TWIST ;)   What that means is that EACH one of us has lived through cancer, experienced the highs and lows, knows the good and the bad, the hard and the good days – and through this experience we have learned the system and discovered the cracks.  And there are always cracks.  We survivors need to view the system “with a twist,” isolate the cracks in the system, then DO something to fill these cracks and make the system better for those who fight after us!  Only then… ONLY THEN – will we make this cancer world a better place!  Who better than us to improve the system!!  It’s our duty- our obligation- our purpose.   That’s my twist :)   And I’m excited to befriend and work with SO many amazing survivors to get the job done!

To learn more about Imerman’s Angels

Jonny Imerman
Testicular Cancer Survivor (2x)IMERMAN ANGELS – Chief Mission Officer
www.ImermanAngels.org
1-on-1 Cancer SupportArm of Lance Armstrong F. / LIVESTRONG
O:  (312)  274-5529
400 W. Erie Street, Suite #405
Chicago, IL 60654

Here’s My Twist On Cancer- Now What’s Yours?

Everyone is touched by Cancer.

And everyone has their own “Twist on Cancer (TM)”.

How you choose to fight this disease and support others that are affected by it- is completely up to you.

I chose to fight Cancer with the Twist.

As the disease tried to rob me of my spirit, I chose to Twist my way through the disease.

So what does it mean to “Twist out Cancer” (TM)?

Throughout my journey as I documented my journey through my blog, I realized the critical importance of movement during a time when I felt trapped and betrayed by my body.  During the days when I was immuno-suppressed and unable to live in outside world, I danced alone in my room, dreaming about what it would be like to be joined on the dance floor by my family and friends.

As the moments, days, and months wore on- the lonliness and isolation worsened. While I was increasingly disconnected from the world around me- I was determined to figure out a way to bring the people I cared about most into my world.

I decided to put out a challenge.

I asked my family, friends, and loved ones to twist for me.

While I was unable to physically do the running man, or the electric slide, I could do the Twist. I figured if I could do the Twist with poison running through my veins, those I cared about could do it too.

And so we twisted.

Within a few days I had countless videos from tiny twisters around the world- who were determined to Twist out Cancer.

And this is how the movement was born!

twisted in order to reconnect with a body I no longer understood.

twisted in order to raise awareness about my disease.

twisted to give others hope that were fighting.

continue to twist because I can, because I should, and because I must.

I hope you will join me.

I want to know your “Twist on Cancer”. I want to know how you are embracing this experience and making it your own. Together our stories, our “Twists on Cancer” will help support those that need it most, and enable us to pay it forward.

If you are interested in sharing your “Twist On Cancer” through writing, audio or video- please email Jenna at Jenna@twistoutcancer.org

Here’s My Twist On Cancer- Now What’s Yours?

[vimeo http://vimeo.com/24738804]

This Valentines Day.

This Valentines Day my heart is heavy.

A year ago my cousin Polly lost her battle to Lung Cancer. She fought valiantly, courageously, and gracefully for 14 months.

Today, we buried my  childhood friend’s mother who lost her battle to Kidney Cancer. She fought valiantly, courageously, and gracefully for 14 months.

And here we are today- on February 14th-remembering two lives that were cut short too soon.

It was a year ago this week that I ran into you in the waiting room of Northwestern Hospital’s Lurie Cancer Center. I was waiting for blood work and you were waiting to start treatment.

My heart was heavy as I had just learned of Polly’s passing.

Your heart was heavy from the weight of a new cancer diagnosis.

During our brief and unexpected encounter, you made me realize the profound power of touch.  There was nothing you or I could say that would calm our fears or take away the pain.

Instead all we could do was hold each other.  At that moment I felt your strength, your determination, and your desire to live.

It was that strength, that determination, that desire to live that fueled my fight.

With Polly at my back, and you right in front of me, you both guided me through the darkest of nights, and carried me from the shadows into the light.

On this Valentines Day, as I mourn and celebrate the lives of these two remarkable women, I am reminded that sometimes the greatest lessons learned are not spoken but felt.

May you both continue to live in our hearts, and continue to touch the lives of many.