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Why me?

Helen P. — Tue, 29 May 2012 13:00:41 +0000

By Cathy Williams Cathy Williams is a cancer survivor and former patient at MD Anderson. She and a group of volunteers paint storefront windows with pink ribbons every October to raise awareness and funds for inflammatory breast cancer (IBC) . Williams began painting the ribbons on business windows in exchange for donations to breast cancer research in 2006. Despite her own diagnosis of IBC in April 2008, she has continued her efforts but now focuses solely on highlighting IBC. I'm an inflammatory breast cancer survivor. Easter Sunday, I celebrated four years since my diagnosis . Immediately after diagnosis, before the shock wore off, I found myself asking, "Why me?" I have the answers I've always been an advocate for breast cancer awareness. My mom was diagnosed with breast cancer at 32, died at 43, and two of her sisters also died of breast cancer.

The girl who has it all

Helen P. — Fri, 25 May 2012 13:38:30 +0000

By Rachel Midgett My story begins in January of 2009. My husband and I had been married for 11 years and I was about to turn 37.

What we call ourselves — finding the right term for cancer part II

Helen P. — Thu, 24 May 2012 13:04:00 +0000

By Andrew Griffith Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com , is working on a book on his journey, and can be followed on Twitter @lymphomajourney . Part II of yesterday's post : What we call ourselves -- finding the right term for cancer The new beginning We stop looking back. We get on with our life post-recovery. We come to terms with what's the same and what's changed. We define our "new normal." We keep in the back of our minds that time is precious, may be limited and that our cancer could come back. We use a number of terms to describe ourselves, reflecting in part who we are as much as what we've gone through. Intern, student and graduate: As our treatment progresses, so does our transition. We progress from being interns (diagnosis), to students (treatment) to graduate (recovery and post-recovery). We've learned how to be a patient and studied far too much information on our cancer and treatment. At the end, we have a mix of theoretical and "living through it" knowledge that allows us to graduate. This transition also takes place on an emotional level. As an intern, we may be angry and frustrated. As a graduate, we have largely come to terms with what our cancer means for the future. We still need to define what "graduation" means (normal or new normal). And given the incurable (but not necessarily untreatable) nature of many cancers, our graduation may be more emotional in nature. Survivor: We have undergone difficult and harsh treatment, along with the emotions and life lessons that go with it. We made it through and are back to hopefully a normal, or near normal life. However, we are privileged survivors. We had the care and support of our medical teams, family and friends. In response to the widespread use of survivors, some of us use alternate names: "alive-rs" or "thrive-rs" (to have a more positive and active tone, some element of warriors) or "die-rs" (for some who are terminally ill and reject optimistic language). Veteran: We undergo harsh and unforgiving chemo and radiation treatment, where the "war" metaphor applies, lasting six months to a year or even longer. Relapse can lengthen this. Recovery takes time, at both the physical and emotional level. As veterans we're marked by our experience, given its intensity and the life-altering change in perspective and related life lessons. Similar to survivors we feel solidarity with others in a similar experience, whether cancer or another disease, and are recognized in return. One's personal "war against cancer" may or may not be over, depending on whether one's cancer is in remission or whether one has suffered ongoing "collateral damage" in the form of chronic conditions or psychological issues. We either accept this or not. Not accepting is akin to remaining a warrior, struggling and fighting. Living with cancer As I thought about and worked through these terms, it became more and more clear that there was no one term that worked throughout the three phases of endings, neutral zone and new beginning, and that each person had to find the terms that best helped them at each stage, or the mixture of terms that continue to resonate. My preferred term is "living with cancer" or, to use Christopher Hitchens' irreverent expression, "a touch of cancer." I have largely accepted my "new beginning" with equanimity. But other elements remain. I started as a victim and the warrior or fighter metaphor has helped drive my recovery through exercise and other activities. I also consider myself a veteran. I have more knowledge and experience than desired and this continues to mark me in many ways. I feel uncomfortable with the terms hero and survivor, as these may diminish heroes and survivors of more dramatic or worse experiences. However, every now and then, the power of the survivor metaphor hits me, captured by the song, "I Will Survive": Go on now go, Walk out the door, Just turn around now, Cause you're not welcome anymore, Weren't you the one who tried to hurt me with goodbyes Do you think I'd crumble? Do you think I'd lay down and die? Oh no not I I will survive Oh as long as I know how to love

What we call ourselves — finding the right term for cancer

Helen P. — Wed, 23 May 2012 13:03:37 +0000

By Andrew Griffith Andrew Griffith has mantle cell lymphoma and had an auto (November 2009) and an allo (August 2011) stem cell transplant. He lives in Canada and is married with two young adult children. He blogs at www.lymphomajourney.wordpress.com , is working on a book on his journey and can be followed on Twitter @lymphomajourney . During the past few years, I've reflected on the terms people use to describe their life with cancer . Initially, I tried to write a glossary of the terms: hero, warrior, fighter, veteran, graduate, survivor, victim or living with cancer. In trying this out with a few friends, one having gone through a comparable experience, one not, it didn't work. People adopt different terms at different stages; a journey approach captures this better than an analytical approach. Rather than the Kubler-Ross five stages (denial, anger, bargaining, depression, acceptance), written for the terminally ill, I find the William Bridges framework in "Transitions: Making Sense of Life's Changes" more helpful. Bridges talks about three phases: ending (or losing and letting go), the neutral zone (in between, or ambiguous phase) and the new beginning (acceptance and embracing). Circumstances change quickly, transitions take time. This provides a convenient frame for cancer: from "normal" to a new "normal," which we can accept, if not embrace. Ending, losing and letting go Our life falls apart when we are diagnosed with cancer . Our normal view is shattered, our expectations crushed and we have an overwhelming sense of loss. Cancer isn't a pink ribbon; a slogan like "cancer sucks" captures our mood. We tend to be inward focused, coming to terms with our thoughts and feelings. Victim: We may see ourselves as victims. We have lost our previous healthy life. We are angry (why me?). We feel injured, destroyed and even sacrificed, without any reason or cause. Viewing ourselves as victims can be part of our first defense and resistance. Cancer happened to us: we are powerless, we cede control to medical experts to do "things" to us (chemo, radiation, other); our role is limited to understanding and consent. Remaining a "victim" can reduce responsibility for lifestyle factors (tobacco, diet, exercise) and for how we handle and respond to cancer, its treatment and ones around us. The neutral zone: This is the period of realignment and repatterning, and helping us get through it. As we come to terms with our diagnosis and proceed to treatment , war metaphors come into play. "I'm going to beat/fight/conquer this." We choose accordingly, agreeing to the most aggressive treatment our bodies can withstand. We learn our new identity as a patient, and drift away from our previous professional and personal identity. We start to form our response, focus on what to do, seek meaning in the face of the fear of dying and assess what it all means for one's relationships with those closest. Two terms "warrior" and "hero" best reflect this stage. Warrior or fighter (or conqueror, activist): We adopt the "war against cancer" metaphors. We try to "will" ourselves through each chemo or radiation round. We fight the side effects (helped by meds). While we know that cancer is the body fighting itself, we often consider cancer as somehow external to assist the "battle." We are drawn to the primal nature of the will to survive, given the life and death struggle we are in. Fighting empowers us, we feel more in control and have the goal of "beating" this. We take a more positive attitude to the "slings and arrows" of treatment, and are more active in recovery (e.g., exercise etc.). Although the treatment and medical team do most of the work, we view them, along with family and friends, as our "platoon" or "allies" supporting us. We risk sometimes not knowing when to give up, when further treatment will not improve our quality of life and longevity. Hero: Similarly as warriors, we are admired for our courage in how we deal with cancer, particularly the character we demonstrate through rough treatments and side effects. However, we don't choose cancer, it chooses us. We haven't voluntarily or professionally thrown ourselves into a dangerous situation (e.g., fire fighters, military), we just find ourselves there. We do, however, choose how we react to our cancer. The term hero reflects that some reactions are more motivating and admirable to those around us. As we go through the transition phase, we likely are starting to identify our future identity. Part II tomorrow Read more posts by Andrew Griffith

Combining art forms: spirit masks and poems

Helen P. — Tue, 22 May 2012 13:00:30 +0000

By Janet Ruffin Janet Hull Ruffin is an artist, arts educator and poet. She is finishing a book of poems showing what it's like to work with critically ill children in a major cancer center. She focuses on hospital culture, the therapeutic nature of art and spirituality. She retired from MD Anderson in January 2009 after serving as the art teacher in the Children's Cancer Hospital for more than 10 years. Her position was special because the time she spent with patients and their families was not about diagnoses, examinations or treatments. They made art together. Currently, she volunteers with the Children's Art Project working with pediatric patients. One of the most powerful forms of creative expression is achieved by combining art forms. I practiced this concept working on a spirit guides mask project with the pediatric patients in the Children's Cancer Hospital. Spirit guide is a term used to describe an entity that remains a spirit in order to act as a guide or protector to a person. The children and I began by reading a story about spirit guides and discussing what kind of information we would want from our guide. Next, we brainstormed to decide what our guides would look like. Adhering plaster gauze to plastic molds of the human face made the masks. It was necessary to build out features on some of the masks, like the dragon and cobra masks. An eagle and angel mask had wings attached. There were also bear, clown and a superhero masks.

Panel Introduces Final Recommendation on PSA Screening Guidelines

Helen P. — Mon, 21 May 2012 22:17:29 +0000

By: Will

Breathe Deeply & Repeat

Helen P. — Mon, 21 May 2012 14:54:18 +0000

Heather Purdin, M.Ed., RYT Guest Blogger I have no idea when it started and for the longest time, I was unaware that I even did it until I was given the solution by an incredible art therapist. “Breathe. Just breathe. Your only job in this moment is to breathe!” When I get nervous, I forget to breathe. I hold my breath and tighten my tummy. My entire body clenches. My limbs do a tap dance as I bite my lip and become flushed. This can provoke my heart to palpitate and my palms to sweat… Most of us have experienced this “fight or flight” response, where the mind and body prepare to adapt to potential stress. This protective response radiates the genius of our nervous system at work, protecting us from danger! Of course, when you are in the middle of it, it can feel rather uncomfortable. Unfortunately, I seem to have a highly sensitive and active nervous system. I manage an incredible amount of anxiety on a daily basis. I am learning to work with this as part of my nature by accepting that this is how my biology works. With that being said, I am also learning how to bring my mind and body back to a state of balance using this biology to my advantage. A simple, effective practice… During the last blog, “Where ever you go, there you are,” I promised to introduce you to a recovery skill that also always travels with you everywhere you go… Sit down and brace yourself, for this may sound ridiculously oversimplified. The most profound coping skill I have discovered on this recovery journey is breathing. When I practice breath work, stress dissipates as reliably as ice melts at room temperature. In fact, I have never found anything to work with such consistency and simplicity, at least in the moment I am practicing. Accept the possibility… Before you roll your eyes and stop reading, please hear my plea. “Breathe. Just breathe. Your only job in this moment is to breathe!” When I first heard these words, I actually had mixed feelings. On one hand, I wanted this idea to be true. It gives permission to place all of life’s pressures, peoples’ expectations, and personal responsibilities on the back burner, at least for a moment. When the stress trigger is pulled, all I have to do in any one moment is breathe? Really? On the other hand, I could not fathom that this would really help. How could something so natural and simple work? Eating disorders and the underlying web of contributing factors are incredibly COMPLEX. Those pressures, expectations, and responsibilities are not going anywhere, either. I am still going to have to face them, right? Although I was too stubborn and suspicious to implement the practice the art therapist taught me, intuitively, I knew she was on to something. Hence, those words began to spring to mind during tough times, rather relentlessly. At some point, I at least accepted the possibility that this breathing thing might help. While I had not yet embodied the practice of attending to my breath, I began telling myself in some moments of fear, panic, and sadness, “I am OK right now. I’m alive. I am still breathing.” Fast forward several years. After hitting a plateau in talk therapy and hoping for a reprieve from severely impairing anxiety, I began taking private yoga sessions. Yoga was the only place where I felt comfortable in my own skin. I looked forward to that one hour a week, where I could be in my body with calmness and clear my mind enough to make space for a little bit of hope. Every class began and ended with a focus on breath work. This allowed me to step away from “thinking” and “intellectualizing” the practice by immersing myself within it, physically. I had that ah-ha moment, “This is what she was talking about! Right now, my only job is to breathe!” Breath work is a recovery resource that is always accessible no matter where you are! It is paying attention and learning to control the breath. In yoga, we call this practice, pranayama. It is considered such an important life practice that it makes up one of the eight limbs of yoga. If you are willing to take my word for it, please feel free to skip over the following explanation of HOW it works, and just allow yourself to EXPERIENCE it. Otherwise, perhaps a little fact sharing will entice you to practice the exercise at the end of this blog. Regulating the Body… Breathing is one of the few bodily functions controlled both unconsciously and consciously. If you do not consciously breathe, eventually nerve impulses will travel to the diaphragm and stimulate respiration. Perhaps this explains why most of us go through life with so little awareness of our breath. We do not really have to pay attention to it. However, when we do, there are genuine physiological payoffs! The nervous system is incredibly complex, so we’re just going to examine the autonomic nervous system (ANS) and its relevance to the breath. The ANS regulates smooth muscles, the cardiac muscle, glandular effects, and – respiration! When out of balance, the ANS regulates through stimulating either the sympathetic nervous system (SNS) or the parasympathetic nervous system (PSNS). Think of the SNS as an accelerator (fight or flight) and the PSNS as the brake (rest and digest)! Have you ever felt completely stressed out, as in stressed to the core? The pupils dilate, the heart accelerates, and the digestive system slows. The SNS releases hormones and neurotransmitters that activate the fight or flight response, again, to protect us from pending danger. Unfortunately, chronic stress can make for a very touchy accelerator, and in my case, a very shaky body! Luckily, there is a way to trigger the PSNS response in order to bring the mind and body back to balance. I wish I had not gone so long without knowledge of how to use my breath as a buffer against stress and anxiety. Practicing conscious control of the breath is one of the quickest and most effective methods of self-regulating. Deep, relaxed breathing circulates a nourishing supply of oxygen throughout the entire body. This allows your blood pressure and heart rate to drop, digestion to resume, and adrenal glands to balance hormone levels, together relieving tension and evoking a state of relaxation. The next time you feel stressed ask yourself, “Do I need my accelerator or my brake?” When you need a break… It is very difficult to put into words the healing power of attending to your breath…so just try it. We could offer an entire series of blogs for various breathing practices, but here is a simple practice to begin. 1. Find a comfortable seated position, whether sitting in a chair or taking easy pose on the floor. 2. Allow the heart to lift and shoulders relax as you sit tall and lengthen the spine. 3. Without making effort to change anything, just begin to pay attention to your inhale and exhale, noticing the subtle movements that occur within the body with the rise and fall of the breath. 4. Now, begin breathing in and out of the nose. Maybe you can feel the air entering with a crisp coolness and existing with moist warmth. 5. Breathing in and out of the nose is not typical for most of us. If this is a challenge for you, be kind and patient. Just note this is a new pattern. Continue to practice until you can do this with ease. 6. Next, bring your awareness to your belly. Allow the belly to soften and expand on the inhale and the navel to draw toward the spine on the exhale. If you prefer a visual, you can imagine that the belly is a balloon inflating on the inhale and deflating on the exhale. 7. Note the rhythm of the breath as you inhale and exhale. As you settle into the rhythm of your breath, you may find comfort in slowly extending the length of the breath. 8. You may enjoy practicing equal inhale and exhale. Counting the length of the inhale and exhale is great way to begin tracking the pace of the breath. 9. “Breathing in, I know I am breathing in. Breathing out, I know I am breathing out.” 10. The ONLY way this works is by DOING it! Sometimes, it just takes one minute of effort before noticing the calming effects. This practice will not make your life perfect or even promise a stress-free future. However, it will allow you to slow down, regroup, and face the moment ahead with more clarity and calmness. I hope you allow yourself to experience the profound healing effects of your breath. It just takes practice. You do not have to reinvent the wheel for this one. If you watch a newborn baby or relaxed animal breathe, you will notice their belly rise and fall with their breath. It is our nature. Do not get in the way of your own healing nature! Just settle into your breath, where ever you are! emBODY it. enJOY it! Breathe deeply & repeat!

Patients turned advocates: Staying involved to help others

Helen P. — Mon, 21 May 2012 13:01:50 +0000

Getting through cancer treatment is like surviving a siege. When it's over, many patients resume their lives and don't look back. For others, though, the experience compels them to help others in the same situation. So they keep a foot in the world of cancer treatment by helping new patients individually, by staying involved with support groups, or by supporting research or advocacy efforts. Here are brief profiles of three people who felt called to speak up for cancer patients. One lobbies for more research and awareness of pediatric cancers , another works one-on-one with patients and contributes to research, and the third counsels patients through the Anderson Network Telephone Support Line and a national foundation. From the personal to the political Val Marshall is the mother of a pediatric cancer patient, though pediatric hardly seems to apply to her tall, athletic son Addison, who will enroll at Texas A&M University this fall. Since Addison was diagnosed with acute lymphocytic leukemia (ALL) nearly three years ago at the age of 15, Marshall has accompanied him to countless appointments and treatments. A professional organizer, Marshall became involved with other parents while they passed time in waiting rooms. "They noticed my binder," she says. Marshall's customized binder keeps track of Addison's appointments, medications, treatment requirements and more. Knowing how overwhelming this task can be for parents already under stress, Marshall offered to make binders for other parents. Later, through her involvement with the childhood cancer support group Candlelighters, Marshall heard about and signed up for Advocacy Day in Washington, D.C. A former pharmaceutical rep, she knew the drill of visiting congressional offices, making her case and trying to make an impression. But now she was lobbying for the "medical orphans," as she calls them -- the 13,500 children diagnosed with pediatric cancers each year in the United States. Because these are relatively few diagnoses, research funding is lacking, she says. MD Anderson is the "last station of hope" for many families, she says.There are so many kids who don't make it." She has great compassion for the families of pediatric patients, as well as the patients themselves. This compassion serves her well on the steering committee of Anderson Network , where she represents the parents of pediatric patients. She recalls that when a longtime friend who is a pediatric nurse saw her soon after Addison's diagnosis, she hugged Marshall and said, "Addy will be fine, but you will never be the same." Survivor emphasizes humanity of fellow patients From the moment he arrived at MD Anderson, Tom Touzel showed the tenacity he brings to advocacy for bladder cancer patients. After receiving his diagnosis -- and a poor prognosis --

Patients turned advocates: Staying involved to help others

Helen P. — Mon, 21 May 2012 13:01:50 +0000

When ‘good’ tans go bad: confessions of a tanaholic

Helen P. — Fri, 18 May 2012 13:05:07 +0000

By Kim Benz Once upon a time, there was a girl who grew up on the beaches of Gulf Shores, Ala. As a teenager she would bask in the warm summer sun, her skin glistening with baby oil. Fast forward a few years. At age 17, the girl discovered tanning beds and was instantly addicted. The girl I'm talking about is me.