What I’ve learned from watching “Cancer: The Emperor of All Maladies”

emperor of all maladies imageCancer is commonly called a thief, a villain, a plague and a few “NSFW” words I won’t use here. But its latest nickname is “The Emperor.” When it comes to an illness, cancer truly is the emperor. It rules all others, makes no exception to who it targets, is powerful, greedy and does not want to be stopped.

When I first started watching the PBS documentary Cancer: The Emperor of All Maladies on Monday night I wasn’t sure I agreed with calling cancer an emperor. It seemed to be such a positive and powerful term to place on something with such a negative impact. But after two nights of tuning in and live tweeting, and as I get ready for the third, I get it. Cancer is a disease like no other, even within itself it never seems to be the same way twice—it’s smarter than that. Giving a powerful disease a powerful name pays respect to the millions of people who take on “The Emperor” every year–a respect greatly earned by all who are affected.

But that isn’t the only thing that struck me while watching the first two nights of the film. For anyone who hasn’t watched yet, it takes us back to decades ago and walks us through the progression of treatment and innovation–from when we first treated childhood leukemia with chemicals (an extremely radical idea in its day), to the first radiation therapy treatment given by a homemade x-ray, to using a form of mustard gas, and then the inspiring success of the Herceptin clinical trial. However, cancer treatment isn’t the only thing that progressed during the film. We have come leaps and bounds from the early days when it comes to patient support. Cancer was once believed to be a communicable disease, where patients were sent away from society upon their diagnosis. People lived in fear that they could catch the disease, or worse, give it to their friends, family members or neighbors. Treatment decisions were made by the physician, not the patient. And social and emotional distress was just an unfortunate side effect to be overlooked.

Today, the landscape is different, but there are still strides to be made, not just in searching for a cure, but in improving the entire patient experience. Until cancer is history, the Cancer Support Community and countless others will be working tirelessly to support all who are impacted by this malady.

Cancer: The Emperor of All Maladies airs at 9 p.m. ET on your local PBS channel. CSC and countless others will be tweeting our thoughts throughout the film with the hashtag #CancerFilm. Follow us at @CancerSupportcm to join in the conversation. To learn more about this important documentary, listen to this episode of Frankly Speaking About Cancer with two of the men behind the film, Executive Producer Ken Burns and Director Barak Goodman.

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What we can learn from Angelina Jolie Pitt

Angelina Jolie“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this.…There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.” – Angelina Jolie Pitt 

Yesterday, Angelina Jolie Pitt made headlines when she revealed her decision to surgically remove her ovaries and fallopian tubes, due to an estimated 50% risk that she would develop ovarian cancer. The risk stems from a hereditary mutated gene, the BRCA1, which not only affected Jolie’s ovaries, but gave her an 87% chance of developing breast cancer as well (before her double mastectomy in 2013).

We sometimes forget that even celebrities face challenges which can make them feel lost and without control, but the emotional effects of cancer are universal. People say cancer doesn’t discriminate, but that’s not true; cancer is an unfair disease which affects the population unequally, and the sad truth is that some of us are more at risk for certain cancers based on our genetic backgrounds than others. But just because you carry a gene doesn’t mean that you don’t have options.

CSC has talked in the past about the importance of staying informed about your own personal circumstance, but this has never been more important than with regards to your genetic inheritance. So what are the steps to determining your next move?

  1. Study your situation: Find out about the history of cancer in your family. If you’re worried that you might be a gene carrier, consult a doctor. The earlier you know about your risk and the more you know about your risk, the faster you can start brainstorming your choices.
  2. Lay out all your options: Talk to your doctor, family, friends and loved ones about the realities that you are facing and the best course of action. Utilize CSC’s Open to Options to formulate a list of targeted questions to ask your oncologist about treatment choices, and feel empowered to make the choice that best fits your personal needs.  Talk to other people about the routes they took and their experiences through the Living Room, our online community. Now is the time to put everything on the table.
  3. Reflect: Don’t jump to conclusions, be judgmental or rule anything out; take your time and really evaluate each possibility with an open mind. Don’t let yourself be ruled by any fears you may have, and remember that the best decisions are made with a calm and clear head.
  4. Choose the best option for YOU: When it comes down to it, you are the one who knows yourself best, and you are the one who should make the call.

Facing your fears to make this decision can be intimidating, even for stars like Angelina Jolie. But, as Karen Hurley, a clinical psychologist specializing in hereditary cancer risk noted, “Ms. Jolie’s story beautifully illustrates a hidden truth about making big decisions (medical or otherwise):  the process of listening to yourself and deciding what it right for you creates that peaceful center that will help you through the ups and downs of screening, surgery and treatment.”

We know you’ve got what it takes. And you know you’re not alone.

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3 things to know about oncology social work: #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 Justin Short, MPH, MSW, LCSW. Justin is a Cancer Support Helpline counselor. 

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Q: How do you help patients cope with all the stress and emotional turmoil of the cancer experience?

Justin: First and foremost, I try to just listen to what they have to say with empathy, compassion and no judgment. I let them know they are not alone and whatever they are feeling at the moment is exactly what they should be feeling.  Furthermore, I always mention it takes a tremendous amount of courage and strength to ask for help and show vulnerability. It is these traits that will help them become more active and involved in their treatment and result in more positive outcomes.

Q: How do you cope with the emotional rollercoaster that your job can put you through?

Justin: I cope in several ways:

  1. Trail-running in the mountains around my home as often as I can.
  2. Fly-fishing in Yellowstone National Park.
  3. Regularly sharing my emotions with my co-workers, family and good friends.
  4. Hiking with my wife and dog to our local brewery.
  5. Mindfulness meditation and creative drawing.

Q: What is the number one thing you have learned from being an oncology social worker?

Justin: The number one thing I have learned from being an oncology social worker is actually sort of a selfish thing. I love learning how to face my own adversity in life from the clients, patients and families I have the honor of meeting and working with every single day. Being regularly exposed to people exhibiting an awe-inspiring level of resilience, strength and fortitude in the light of one of life’s biggest challenges humbles me to the core – and makes me want to be a better person and not take a single moment for granted.

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A Day in the Life: #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 Charli Prather, MSW, LCSW. Charli is a Cancer Support Helpline counselor. 

cpc headshotQ: Why did you choose to work with people impacted by cancer?

Charli: This is my 2nd career.  I decided to work with hospice and oncology patients after my first cancer diagnosis at age 27.  When I was diagnosed a 2nd time at age 35, I KNEW that working with cancer patients was going to be challenging, so I worked with hospice patients first.  I wanted to put a few years between me and my diagnosis so that I could be an effective practitioner to those who were in need of professional support.

Q: Have you ever had a specific experience where you felt, “This is why I do this”?

Charli: Just ONE?  I get many at each and every shift.  I should keep count at each shift how many people THANK ME for simply returning their call, or listening to them rather than passing them on to another resource if we can’t help them with their particular issue.  Some days callers just need a place to put their pain.  We are that place.  

Q: How do you help patients cope with all the stress and emotional turmoil of the cancer experience?

Charli: I never try to “fix it” for them with platitudes.  Cancer patients need to hear that what they are going through stinks.  The call line is a place for them to find refuge, to be heard, to vent.  Finding them resources is only part of our job on the call line.  We have a commitment to each and every caller to hear them out, and if we can’t find an answer for them, we’ll at least listen to their story and try to find an organization that may be able to link them to someone who CAN assist them.  Some days, when nothing is there to help them out of their situation, I have to remember that some times, all we can do is hold that painful space for them. If they aren’t open to really sharing their story, I may just ask them “how are you holding up” or what are you going to do for yourself when you hang up?”

Q: How do you cope with the emotional rollercoaster that your job can put you through?

Charli: I have a daily yoga and meditation practice.  I also teach yoga and meditation to special populations (Veterans, cancer patients, MS patients, bigger bodied yogis).  Becoming a Registered yoga Teacher was just part of my journey to better self care after realizing I wasn’t “walking my talk” after several years of survivorship.  When we take on another’s pain, the only way to shed that pain is through movement and acts of joy.

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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. 

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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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