What I’ve learned from being an oncology social worker- #31DaysofSW

March is National Social Work Month. In honor of our many social workers, CSC is featuring a new blog every day this week from a different CSC social worker. You can also send out your own tribute to any social worker who has made a difference during your cancer journey on social media with the hashtag #31DaysofSW. Today’s #31DaysofSW blog post is from Sara Goldberger, LCSW-R. Sara is the Senior Director of Programs at the Cancer Support Community Headquarters. 

Sara headshot dec v3

I have been an oncology social worker for 25 years.  There are many lessons I have learned but probably the one that has transformed my life is to try to live each day with as much presence in the moment as I can.  I admit that this isn’t always easy but the closer I stay to living in the moment, the more I experience the joy of being alive and the less I worry about what’s to come or trying to control what’s beyond my control.

I began my career in Oncology Social Work in a hospital that provided palliative care for terminally ill cancer patients in an acute care setting.  In my case load I had close to 300 deaths each year.  My experiences here were certainly challenging, but I knew what the outcome would be for all my patients.  Everyone died. I listened to their stories about regret, love, loss, triumph and tragedy.  Their attempt to make meaning of their lives.

My next job was as a Program Director at a Gilda’s Club. There the outcome was less certain and very unpredictable.  The woman with early stage breast cancer who I expected to be fine had a swift recurrence and died.  The man with a stage 4 colon cancer is still alive today and enjoying his life.  I saw our members including the families struggle to live lives with very uncertain futures.  Some did this well; others not so well.  I tried to discern what it was that helped people to face the uncertain future with grace and dignity, and came to understand that it was those who accepted this uncertainty and lived their lives as fully as possible, whatever that meant to them.  I learned about living with uncertainty. I learned from those who had more difficulty accepting the uncertainty that this was not the path for me.

Over time I realized that the only way for me to make sense of both these experiences and in a small way honor all of those “teachers” who didn’t have the luxury of living long and happy lives was to be present as possible in my own life.  For me this means that my awareness is focused on what’s happening right here and right now.  I try not to worry about the future, obsess about the past, or hope for things that are beyond my control.  In practicing this way of living, I believe it helps me to be a better mother, sister, aunt, friend, co-worker and yes, Oncology Social Worker.

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Why I became a social worker- #31DaysofSW

March is National Social Work Month. In honor of our many social workers, CSC is featuring a new blog every day this week from a different CSC social worker. You can also send out your own tribute to any social worker who has made a difference during your cancer journey on social media with the hashtag #31DaysofSW. Today’s #31DaysofSW blog post is from Jim McManus, LCSW, BCD, DCSW, OSW-R. Jim is a Cancer Support Helpline counselor. 

Jim McManusBack in the 1960’s , as a young, newly married man, I felt a sense of hope for the future – if someone would just do something. I felt that I was up for the challenge. I was naïve. Had no idea of what would lie ahead; how my “liberalism,” idealism and good wishes were no match for engrained experiences and intractable behaviors that resulted in often disastrous consequences. I started my career in what is now the “Murder Capital” of the U.S.—Camden, New Jersey.  Crime was rampant then but not in the same way it is today. There is a sense of hopelessness about Camden. Too much poverty, not enough opportunities for kids, too much easy access to drugs and weapons. When I started, the other young social workers were pretty much in the same boat; idealistic, cocky; to use a cliché, it felt like we could make a difference. Sometimes on protective services calls we went with the police. They were members of the “team” back then, Much as were the prosecutors , judges and the all-important, judges’ scheduler. The scheduler could slip you into chambers to lobby for a client. We saw family issues as system problems and acted accordingly. On TV today, some police dialogue denigrates the role of the social workers. Back then a policeman told me how sometimes he didn’t know how we did our jobs. I said I felt the same way about him. He responded by saying, “…you go into madhouses carrying a notebook, I go in carrying a gun.”  We respected one another’s roles and connected accordingly.

Mother Theresa of Calcutta said, to work with anyone, it is vital to be aware of their dignity as human beings. This message proved its validity time and again. It was exciting to work with families adjudged as “delinquent” and see the impact of not judging and not pretending to know how it was for them. Many of the people we worked with were seldom afforded the opportunity to vent frustration, discuss options and consequences. Talking with someone with no axe to grind was a novel experience for many of our contacts. Working with families as the “State” was a tricky proposition. Our motives were suspect. We were felt to be the people who took children and separated families. Unfortunately, sometimes this was what happened. In many cases, as time went on, trust was established, shields were lowered and positive relationships were able to be developed. People sometimes would decide to discard historically dysfunctional approaches to consider issues and chart a course for themselves that was out of their established comfort zone. No better feeling than experiencing people let themselves loose in the possible. Great stuff. I dove into Social Work and have never looked back. Times have changed, systems are far more complicated, but the need to be mindful of each of our dignity remains the same.

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Love your social workers: #31DaysofSW

Helping HandsPrimary care physicians, surgeons, oncologists, radiologists, nurses, oncology nurses…the list of people you can interact with during your cancer journey is seemingly endless—and it can change constantly. Each one of these professionals plays a different role in treating your cancer. But, add one more to the list, the oncology social worker—the person responsible for treating YOU.

A social worker seeks to improve the quality of life and well-being of individuals, families, couples, groups and communities through research, policy, community organizing, direct practice, crisis intervention and teaching.

For someone impacted by cancer, a social worker can make all the difference. Oncology social workers support patients and their loved ones in a myriad of ways, including providing available resources, information regarding medical and insurance coverage and tips for how to talk to your loved ones about your diagnosis. Oncology social workers often offer relaxation techniques to reduce anxiety, lead support groups and help identify areas of distress. They’re not just advocates for the patient, but for the whole family.

With 170 locations across the country and around the world, the Cancer Support Community is the largest employer of oncology mental health professionals, including many licensed social workers. At CSC we strive to ensure that cancer care is high-quality and patient-centered, and social workers are the core of this, as they focus on the whole patient in their every-day work.

All this month, CSC is saying a BIG thank you to our social workers for the unending support they provide to people impacted by cancer. Through our #31DaysofSW campaign on Twitter, you can read our daily tributes to our social workers, and this week you can learn more about some of them on our blog when we take you through a day in the life of 4 CSC social workers.

How have social workers changed your cancer journey? This month we are inviting you to share your story with us, and say a special thank you to your social worker by using the hashtag #31DaysofSW on our Facebook page and Twitter account. You can also share your story here.

For more resources, information about CSC’s programs and services and to speak to a licensed-mental health professional, please call the Cancer Support Helpline at 1-888-793-9355. The Helpline is available Monday through Friday, 9 a.m. to 9.p.m. ET.

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Healing—it takes a community

Today’s blog is from Judy Pearson. Judy has written nearly two decades worth of newspaper and magazine articles, and has published three books. In 2014, she was named one the most inspirational women in Chicago. A triple-negative breast cancer survivor, she is the co-founder of the Women Survivors Alliance, and the editor of NOU Magazine.

Judy WSA headshot

Being a long time freelance writer and published author, research and writing were important to me as I traveled my breast cancer journey four years ago. “Cancer University” has taught me a great deal about life, as you’ll soon see.

For centuries, a typical day for the men and older boys of Israel’s Negev Desert Bedouins consisted of herding and farming and other manly pursuits. And as soon as the men left each morning, the women and girls pulled up the sides of their living tents and went about their chores. They laundered together, cooked together and oversaw their children together. Most importantly, they learned from one another.  Elder to younger, experienced to inexperienced, the women shared their knowledge and life’s stories.

In the 1960’s, in an effort to better the Bedouins’ lives, the Israeli government began moving them from their tents into government-created towns and houses. The men’s lives continued as they had, but the women’s lives vastly changed. They found themselves isolated by their houses’ walls. The communal style with which they were familiar and upon which they relied, had completely evaporated.

Then, the government created community centers in the housing settlements for the women to make and sell their crafts on the open market. However, these centers added something entirely unforeseen. The women were once again in a communal setting where learning and sharing could be passed from one to another. The centers became the heartbeat of life and empowerment for the Bedouin women.

Yes, this little story has nothing to do with cancer. But it makes a very important point: women are communal creatures. And that’s never more important than when we are healing.

As medicine and science recognize more and more, men’s and women’s bodies behave differently with respect to diseases and treatments. And why wouldn’t they? Our bodies are fueled by different hormones, and those little guys (and girls) make all the difference.

A woman’s communal instinct has a great deal to do with the neuro-hormone oxytocin—secreted in both men and women as a response to stress (and healing from cancer is stressful, right?). Oxytocin reduces stress and enhances affiliation. Here’s the kicker: male hormones reduce the effect of oxytocin. But estrogen amplifies it.

Communing has been the topic of myriad studies as well. Shelley E. Taylor, author of The Tending Instinct, talks about women “befriending” one another. Under stress, Taylor says, the desire to be with others is much greater among females than among males. We girls crave networks that provide us with resources and protection.

In The New Feminine Brain, Mona Lisa Schultz and Christiane Northrup discuss that many women find biological comfort in one another’s company. Language is the glue that connects one female to another. No surprise since we know that women, on average, talk and listen a lot more than men.

No wonder so many cancer support groups are begun by women! I know from personal experience that cancer can be very isolating. Even encircled by loving family and friends, there is great need to also be with others who “get it.” The type of cancer doesn’t matter, but clearly gender does.

SURVIVORville picture

A crowd enjoying last year’s SURVIVORville event. Don’t miss this year’s event, June 5-7, 2015.

My co-founder and I created the Women Survivors Alliance because we couldn’t find anything else like it for ourselves. We bring women together for education, inspiration and motivation in three ways:

  • www.SURVIVORville.org – an annual event, held in Nashville, with Cancer Support Community as an important partner. This year’s can’t-miss event is June 5 – 7. Click the link above to register.
  • www.NOUMagazine.org – our free, online magazine, with articles covering nutrition, exercise, intimacy, finance and more.
  •  www.Survivors2ndAct.org – recognizing that helping is healing, this platform welcomes essays from women around the world, sharing how they’re using their gifts of time and experience to give back to society for the greater good.

So ladies, here are the take home lessons:

  1. Get as much information as you can—from the internet, your health care team and others who have gone down the same road as you. Useful information comes in all shapes and sizes, from all walks of life!
  2. Find support groups in your area and try them out. Like the perfect pair of shoes, if one doesn’t fit, try another.
  3. Start your own group with one or more like-minded survivors. You’ll be amazed how many other women have the same needs you do.

I promise you will travel the healing path much more easily – regardless of how long it has been since you heard the words, “You have cancer” – in the company of others.

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Gratitude for Cancer?

This week’s blog post is a guest blog post by Marcia Donziger, Founder and Chief Mission Officer of MyLifeLine.org Cancer Foundation

Marcia

As a woman diagnosed at the age of 27 with Stage IIIc ovarian cancer, I went through a dark time.  According the stats, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my Diagnosis Day (D-Day).

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.  Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No,” my doctor said confidently. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom,” he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim, “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have ovarian cancer.  You’ve had a complete hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was, “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was crumbling.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – age 28, ravaged physically and emotionally, divorced, and dreading life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

Today I am the proud mother of twin boys – now age 8 – who were born with the help of an egg donor and surrogate mom, Katrese.  She and I became fast friends during the pregnancy, which was very healing for me.  She was even one of the founding board members of MyLifeLine.org.

Today, I feel grateful.  Grateful for that traumatic day the C-Word crashed into my life and burned up the future I’d planned.

Today, I get to rebuild my future and help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.

Today, I get to be a Mom to 2 incredible children.

Yes, that’s right.  Today, I am grateful for the ovarian cancer diagnosis that turned my life upside down and caused me to go down a new, uncharted path.

Today, I am confident there is beauty beyond the pain and the fear.

Today, I ask you, what are you grateful for?

About MyLifeLine.org

The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community through free, personalized websites. MyLifeLine.org is the only personal website service that consolidates all community communication needs in one place, while focusing 100% on people affected by cancer. Research shows that increased social support during a cancer diagnosis can improve outcomes. Every day, MyLifeLine.org provides free, personal and private websites to patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

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