Monthly Archives: February 2015

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Meet Laura, a Cancer Support Helpline counselor

This is a guest blog post by the Cancer Support Community (CSC). 

Are you newly diagnosed with cancer and unsure of what to do next? Or a longtime survivor looking for new resources? CSC’s toll-free Cancer Support Helpline (1-888-793-9355) is available to help you navigate every step of your cancer journey. Professionals like Laura, one of the Helpline’s licensed mental health professionals, are equipped to help you find the support you need!

CSC spoke with Laura to learn more about how she got involved with the Cancer Support Helpline and how it makes a difference in the lives of people touched by cancer.

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Laura, a Cancer Support Helpline professional

CSC: How did you become so interested in the cancer experience?

Laura: I found my passion for oncology work when I did my internship for my Master’s in Social Work degree at the Cancer Support Community (then The Wellness Community) in 1999-2000. While co-facilitating support groups and working one on one with cancer patients and their support persons, I began to understand how enriching this work really is. I’ve worked in the field of oncology social work ever since.

CSC: What type of training did you receive to become a call counselor for the Helpline?

Laura: First of all, I had my Master’s in Social Work degree and am a Licensed Clinical Social Worker. I also have extensive experience in the field of oncology social work, including pediatric oncology, support group facilitation, program development and evaluation as a former Program Director, and hospice experience. Once hired, though, I went through a specific and intensive training to become a call center counselor. We continue to be trained on some of the more technical aspects of the job, but also learn more of the clinical pieces, as we continue to expand on the services that we provide (i.e. Distress Screening, Open to Options, etc.)

CSC: What services does the Cancer Support Helpline provide?

Laura: We provide support for callers, in general. What that looks like from one call to the next, though, may vary. Some people are looking for resources. We try to assess their needs and educate them about both national and local resources that they could benefit from. Others are just looking for someone to talk to and process with. While we do not provide ongoing intensive counseling, we can provide people with compassion and understanding and sometimes just talk them through a difficult moment and then try to link them to those resources that will help them in the long term.

Outside of the “general”, we also have some more specific things that we can provide for callers. We can offer distress screening, which is a brief tool that is done online and helps identify where people are experiencing the most difficulty. That allows the caller to have better insight about their own distress and also allows us to more appropriately intervene. We also can provide our Open to Options program to those who have an upcoming doctor’s appointment where they will be deciding on some aspect of their treatment. The Open to Options tool is designed to help “fine tune” their questions and help them feel more organized for their appointment, in hopes of maximizing the time they have with the doctor.

CSC: What are some of the most common questions you receive on the Helpline?

Laura: There isn’t a specific question, per se, that comes to mind. What’s common, though, is the underlying “theme” of the questions, which is often the idea of “normalizing.” People need to know that what they are experiencing is “normal.” That alone seems to decrease anxiety and the sense of isolation that people feel when going through cancer.

Sometimes even reframing their perceptions can be helpful. For example, someone may express feeling “depressed.” While this can be “normal” depression, it might also be grief. Sometimes it helps people to think about things in a different way that doesn’t seem as “diagnostic.”

CSC: What do you find most rewarding about working for the Helpline?

Laura: To me, it’s the fact that people share their story and feelings with me during such a difficult time. It’s also the fact that, whether it’s through sharing information, offering support, or just listening, I might have some sort of positive impact on a person’s cancer journey. In a nutshell…it’s the connection with people that’s most rewarding.

CSC: Can you tell us about a particularly rewarding moment from working on the Helpline?

Laura: It may sound simple, but the most rewarding thing was when someone said to me, “My anxiety level has decreased significantly after talking to you.” I think this statement underscores the importance of people having a place they can call into where they feel safe and where they feel heard.

CSC: What is your favorite piece of advice to give to those who call the Helpline?

Laura: One piece of advice that would apply to everyone would be to simply give themselves “permission.” Whether that’s permission to grieve the many losses that come with a cancer diagnosis, permission to ask a question multiple times until they really understand the answer, permission to feel OK about getting a second opinion, permission to care for themselves in a way they never have before (such as join a support group or set limits with others)….the list goes on. I think people begin to cope better when they give themselves “permission.”

CSC: Why is the Cancer Support Helpline so important?

Laura: Because it gives people access to information and support who might not otherwise have access to it, knowledge of it, or feel comfortable reaching out in person.

Hopefully we can not only educate people about resources, but also help to “normalize” what they’re feeling in such a way that it helps them feel OK about seeking out the support that can help them along the way.

CSC: Who should call the Helpline?

Laura: Anyone who is touched by cancer in any way.

About Cancer Support Community: The mission of the Cancer Support Community (CSC) is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. As the largest, professionally led nonprofit network of cancer support worldwide, the Cancer Support Community delivers a comprehensive menu of personalized and essential services including support groups, educational workshops and social activities for the entire family at more than 100 locations and online. To learn more, call the Cancer Support Helpline at 888-793-9355 and check out the CSC blog.

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A Board Member’s Voice

This week’s blog post is by Barb Findlay, a member of MyLifeLine.org’s Board of Directors.

Cancer has touched all of our lives in different ways. Over 20 years ago, my father’s sister, Ruby, passed away from metastatic breast cancer. While my aunt lived in the same state, it was still a distance to go to visit her and calling could have been overwhelming to her. My aunt’s passing made me realize how precious life is and how much communication during an illness is so necessary. While that is not my only connection to cancer, it was the one that affected me the most to make changes in my life and get involved.

When thinking of MyLifeLine.org, the quote by Norman Vincent Peale, ‘Throw your heart over the fence and the rest will follow,’ comes to mind. While it has never been stated by Marcia Donziger, the founder of MyLifeLine.org, I believe that it was through her heart that this organization came to life. I met Marcia and was immediately drawn to the organization because it has a huge heart.

At MyLifeLine.org, it is all about the best way we can use technology to provide a service to help the members, whether it is a family member, caregiver or cancer patient. Most friends and family want to be supportive as we try not to interfere during a challenging time, but we wonder what we can do to help. MyLifeLine.org allows us to stay connected, be supportive and offer help where it is needed most.

As a board member, it has been my privilege and honor to work with the staff and watch this organization grow from the small staff of the founder and one technology person to a staff of seven. Giving back by being a board member is a small contribution for what the staff does daily with helping cancer patients and caregivers stay connected to their circle of friends and family. If you know someone affected by cancer, I urge you to share MyLifeLine.org with them, get involved, check in with their helping calendar and post messages of support…Your act of kindness might be just what they need to get through the day.

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Not your average love story

This week’s blog post is by Jen Garza, Executive Director of Texas4000 and friend of MyLifeLine.org.

A wonderful man proposed to me and I happily accepted. WARNING: this is NOT your average “boy meets girl” scenario. I’ve been told on more than one occasion that our story resembles a Hallmark movie. I’m not sure exactly what that means, but I think it implies tragedy, heartbreak, growth and a slightly far-fetched happily-ever-after. Personal experience has taught me that you can never know when or how a story will begin or end. Bad things happen to good people. Wonderful things happen to good people. Ever-after is fictitious, but fairy tales are real. Allow me to share a bit of our prologue.

Let me begin with the summer of 2009 – when monumental events altered our paths forever. That July in Denver, Colorado, Britton Thomas received the news that his wife of four years, Jaqueline “Jax” Arcaris, was diagnosed with an aggressive form of breast cancer. Suddenly what seemed like a future guaranteed to last well into old age together was not as certain. Around that same time, Ruben Garza was on a trip to Washington, DC to represent cancer survivors at a White House event. And I (Jen Snavely, back then) was adjusting to a new life in Austin, Texas and wondering why, at age 32, I still hadn’t met “the one.” Until August 30th… the day I met Ruben and our love story began.

Many of you know this part. We both fell hard and fast. I knew he was a cancer survivor but learned on our second date that he was not actually in remission. He had been fighting Hodgkin’s Lymphoma for about 12 years at that point and the goal was to “keep a lid on it.” We had a few months of the cancer staying in check, unaware that the roller coaster was slowly and steadily climbing to the summit. Then a set of bad scans sent Ruben down the familiar path of appointments, treatment, illness, and uncertainty. This time with a girlfriend who loved him in tow.

Jen and Ruben

Jen and Ruben

About ten months after we met, Ruben asked me to marry him, and on November 6, 2010 we became husband and wife. I’ve said many times, the arc of our cancer narrative never lined up with the arc of our personal story. I’m sure Britton and Jax had a similar experience. We would go straight from chemo infusion to a concert. They would go from a round of radiation to the ski slopes. While on separate paths, the four of us packed more laughter, life, travel, love and adventure into a few years than most will in decades.

Many of you may recall that after Ruben entered into hospice care in June of 2011, we turned to MyLifeLine.org to keep our friends and family updated on our needs and to share some of our highs and lows. Less than two months after Ruben passed away, at the end of 2011, I had the opportunity to meet Marcia, the founder of MyLifeLine, and thank her in person for the invaluable support her service provided. We shared a strong connection and stayed in touch.

Britton and Jax met Marcia shortly after Jax’s diagnosis. MyLifeLine was a powerful outlet for Jax to share her journey through the honest and candid writing that their large network came to rely on. Marcia, living in and operating out of Denver, soon became a close friend and was, like so many others, devastated by Jax’s death in early 2012.

Fast forward a few months. I received an email from Marcia asking me if I’d be open to corresponding with Britton, a young and recent cancer widower who desperately needed to connect with someone he could relate to. I was in dire need of the same thing and could hardly wait for the first email. Correspondence was slow to start, but we reached out to one another for advice during the hardest times. “How did you get through the first wedding you attended after he died?” “What was I supposed to wish for when I blew my birthday candles out when my only wish couldn’t come true?” It wasn’t long before we were a lifeline for one another.

One of Ruben’s primary passions was live music. Red Rocks Amphitheater outside of Denver is one of the ultimate live music venues and one he had always hoped to get to, but never had the chance. I once overheard someone ask him, “If you could choose any show to see there, what would it be?” and after giving it some thought, he answered with certainty: My Morning Jacket. One random day I had the urge to look up the Red Rocks schedule and my heart stopped when I saw MMJ on the lineup. I immediately bought two tickets and told myself I’d figure the guest out later or just go alone. Living in the moment was the only way I could function back then.

Britton and Jax

Britton and Jax

Soon after booking the tickets, I decided I should really make an adventure out of the trip. I had always wanted to go skydiving, and the Rocky Mountains seemed like a better backdrop than the Texas Hill Country. A few weeks later when I was trying to figure out who I knew in Denver who I could offer the extra ticket to, it occurred to me that my “widow pen-pal” (as I’d come to affectionately refer to Britton as) lived somewhere near there. Imagine his surprise when I posed the question, “want to jump out of a plane and catch a show with me?”

The first time I actually heard his voice was on the phone a few hours before we met up in person for dinner the night before our big day. I was in the parking lot of the MyLifeLine offices after visiting with a few of their staff members and sharing more about my journey. They assured me that Britton was one of the nicest people they’d ever met – the words “a gentle teddy bear” may have been uttered. Friends back home couldn’t believe I was going to have such an intimate experience with a “stranger” who I hadn’t even spoken to. I kid you not, at least two different people said, “he could sound like Mickey Mouse.” ??? Luckily, he didn’t. His voice was perfectly normal. And hugging him when I first stepped out of the car felt like I was reuniting with a long lost friend.

We spent a few minutes in his living room where memorial collages still hung before we ventured out to dinner. A little nervous at first, we quickly opened up and began pouring out our hearts, talking about things that would make the average person extremely uncomfortable. Sometimes we’d catch ourselves delving into topics like chemo side effects, end of life concerns, saying goodbye forever – then we’d glance around at surrounding tables and observe people who seemed to be without a care in the world. What would they think if they could actually hear what we were saying?

After dinner we walked all over the city of Denver. Sometimes in conversation, sometimes silently lost in thought, but always comfortably in stride with one another. No pressure to be someone we weren’t. No need to put on a brave smile just to put the other person at ease. No need for sugarcoating or editing. No chance of a romantic interest because neither one of us were even remotely ready for something like that. We finally said goodnight and made plans for the next morning: breakfast, lunch, skydiving, dinner, and the Red Rocks concert. You know – your average first non-date.

What can I say other than that August 4th, 2012 was a magical day? Allow me to share a few highlights:

Just before skydiving we realized we were terrified of losing our wedding rings, so we went out to the car to nervously lock them away. And we shared an understanding.

We overheard an older man being asked why he wanted to jump and he said, “it’s as close to heaven as you can get without dying.” And we both knew exactly what he meant.

When our cameramen interviewed us separately about why we were doing this, we answered in our own ways but saying the same thing. We had people we needed to get closer to up there.

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Skydiving in Longmont, Colorado

Britton pointed out to me that any other summer day in the mountains it would have stormed right around the time we stepped onto the plane. But on this day, it never rained. The sky was perfectly blue. And we thanked Ruben and Jax for giving us a beautiful day.

Later that evening we had dinner and ventured over to Red Rocks Amphitheater midway through the opener. One of the first things we noticed were two large crows circling overhead. A symbol of higher perspective, fearlessness, and magic. Messengers of foretelling, seers of souls, and teachers of change.

Just as My Morning Jacket walked on, a full moon began to rise behind the stage. I was overcome by how much Ruben would have loved every last detail. At one point we turned to one another and I said, “the only thing missing is fireworks. He loved fireworks. But it’s the beginning of August. Pretty unlikely.” I kid you not, a few moments later we saw fireworks off in the distance. His presence was undeniable.

For those of you who are MMJ fans, the 3.5 hour show had a phenomenal set list. They did a 17 minute version of Dondante (a song about loss) during which Jim James whispered “everything changes” over and over again. In those moments and during the chorus of I Will Be There When You Die, among others, tears streamed down my face. At one point I finally broke down enough to cry on Britton’s shoulder.

When we tried to say goodbye at the end of that night, we realized we couldn’t let go of one another. Something very unexpected and powerful was happening and we decided to remain open to all possibilities. Neither of us was looking for love that day. But without even knowing it at the time, that’s exactly what we found.

The next day I “somewhat accidentally” missed my flight back to Austin and we spent more time together. The following night we spoke on the phone for hours. And again every night after that. Three weeks later I went back to Colorado and we climbed a mountain. A few weeks after that, Britton visited me in Austin. We talked every night for months and took things one baby step at a time. Thankfully, back then and ever since, our personal low points never seem to coincide. While one is in tears, the other can be the strong one, assuring that the pain will lessen. We were never alone.

One day we were texting about how much we each needed a break from our everyday lives where we didn’t feel quite as understood as we did when we were together. Britton had been laid off from his job (talk about being kicked when you’re down) and I worked for an organization who supported my need to take some belated bereavement time, so we began planning a month-long trip through the southwest. Thirty days of nature, beauty, rare cell phone service, companionship, adventure, discovery, grief, journaling, healing, laughter, tears, and stepping into the unknown together ensued.

Sometime after this trip we came to terms with the fact that we were officially dating one another and that we deserved to be happy. This is not an easy concept to grasp when you’ve been through what we’ve been through. We already had the loves of our lives. We didn’t want to lose them. We didn’t want to move on. We didn’t want the memories to fade. We didn’t want to diminish what we had with them in any way. But we faced the new territory together and we made an unspoken pact to always make space for Ruben and Jax. And we gave ourselves a second chance at love.

We both knew when I accepted the job with Texas 4000 that I was making a commitment to staying put in Austin for at least a little while. Bridging the distance seemed impossible but necessary for a long time. After making sure that the foundation of our relationship was built solidly on much more than just shared experience of loss, Britton ultimately made an enormous sacrifice. He left friends, mountains, skis, and familiarity behind and moved to Austin, Texas to be with me. Finally living in the same city under the same roof has been an incredible gift. It wasn’t long before we knew we wanted to be together for as long as life grants us the opportunity and to hopefully have a family one day. And on October 28, 2014, Britton asked me to marry him.

Jen and Britton

Jen and Britton

Everyone is so quick to ask, “how did he do it?” So here’s the story… the end of this blog post… and the beginning of a new chapter. A few months back we looked at some rings so he could try to better understand my extreme pickiness when it comes to jewelry. I figured the question might be coming sometime around the holidays or early next year, but really had no idea. It turns out he had ordered the ring a day after we first saw it and had been waiting for weeks for it to arrive. When he finally got the call that it was ready, he went to the jewelry store that day. As he exited the store with ring in hand, the store owner called after his dog, “Jax, come back here.” Britton froze in his tracks. “What did you say your dog’s name is?” To which the owner replied, “Jax.” Britton confirmed the spelling and couldn’t believe the sign he was receiving. His Jax was trying so hard to get his attention, to tell him that “it’s okay” and “I want you to be happy,” that these were the lengths she had to go to in order for him to take notice. And he did.

That night when Britton came home from work we were discussing what to do for “date night” and agreed upon a new yoga class, although he didn’t want me to buy the passes online. He walked out onto our balcony, sat on top of the picnic table and I followed to join him. We sat and looked out on the Greenbelt as the sun began to set. He made some excuse to run inside for a second and emerged back on the deck soon after. He put his arm around me and asked me what I was thinking about. Neither of us remember what I said. I asked him what he was thinking about and he shyly replied, “I’m thinking about how to give you this and ask you to marry me” as he pulled the ring from his pocket. He later admitted that he just couldn’t wait to do it so he didn’t have a formal plan and doesn’t know what he would’ve done if I hadn’t asked him back. Sweet, simple, honest, and authentic. We could hardly wait to tell our families and friends.

We know better than most that the future is not guaranteed. That the reward is in the risk. That there is no time like the present. I try not to use the word “lucky” because it really doesn’t seem to apply to two individuals who lost their adored spouses decades too soon. But we do feel incredibly blessed that our paths crossed, that the stars aligned, and that we were given just enough courage to keep saying yes. Whatever lies ahead, I know I have a partner and a best friend in Britton and I am eternally grateful to have him by my side.

One day at a time, I will continue to live by my motto – choose love over fear – and I encourage you to do the same. And to pass it on.

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About the Author:

Jen Garza, Executive Director for Texas 4000, has been a nonprofit professional for 12 years and a passionate volunteer her entire life. Her love for nonprofit work was cultivated in her years at Penn State University and further developed throughout her time in Philadelphia and Austin. Jen’s loyalty to cancer causes and connecting people with the resources they so direly need was strengthened when she met, married, and ultimately lost her husband, Ruben Garza, to Hodgkin’s Lymphoma.

Texas 4000 is a leadership development organization for University of Texas students cycling 4,000+ miles from Texas to Alaska, raising money and awareness for the fight against cancer. In addition to working for Texas 4000, Jen currently serves on the Leukemia and Lymphoma Society’s Patient Advisory Committee and is a member of Goodwill Staffing Group’s Board of Directors as well as a member of the Seton Forum. Outside of taking risks and conquering fears, Jen enjoys live music, Barton Springs, road trips, Avalon NJ, yoga, rock-climbing, triathlon training, connecting others, and finding strength and hope in adversity.

 

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Today is World Cancer Day

Every year on February 4, World Cancer Day connects organizations and people around the world to unite in the global fight against cancer. World Cancer Day aims to raise awareness that there has been substantial progress made but there is also much to be done at an individual, community and government level to enact positive change for all people affected by cancer.

World Cancer Day 2015 is taking place under the tagline ‘Not beyond us’ and addresses the challenges that cancer patients and caregivers face and how solutions exist that are in reach. One key area of focus on World Cancer Day 2015 is maximizing quality of life by understanding and responding to the full impact of cancer on the emotional and mental well-being level.

A cancer diagnosis can have serious impact on a person’s emotional, mental and physical state. To meet this challenge, all people affected by cancer must be empowered to maximize their quality of life by reaching out to others for support. With providing social and emotional support at the core of MyLifeLine.org’s mission, we help address this need by equipping cancer patients and caregivers with a comprehensive tool to receive necessary support from their family and friends.

Under the World Cancer Day 2015 tagline, it is ‘Not beyond us’ to meet the challenge if the emotional and social impacts of cancer are taken as seriously as the physical impacts and individuals feel empowered to talk about their needs and reach out for support. Cancer patients and their caregivers can utilize MyLifeLine.org to build a social support network and help address the emotional and mental challenges that come with a cancer diagnosis.

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