Monthly Archives: September 2014

Coach George Karl reflects on life after cancer

George Karl and his partner Kim VanDeraa used MyLifeLine.org during George's head and neck cancer experience. They continue to be supporters of MyLifeLine.org and Kim serves on the Board of Directors.

George Karl and his partner Kim VanDeraa used MyLifeLine.org during George’s head and neck cancer experience. They continue to be supporters of MyLifeLine.org and Kim serves on the board of directors.

This week’s blog post is by  former Denver Nuggets head coach and MyLifeLine.org supporter, George Karl.

It’s been 4 ½ years since I finished my Head and Neck cancer treatment. My experiences and interactions have been filled with incredibly talented people and organizations, amazing cancer miracles and some stories that are very mysterious.

First my health is on a strong recovery but as a cancer survivor staying alert and aware is the best way to stay a survivor. The fact of what you eat has become a daily journey and I try to feed my immune system better and better knowing our nutrition is the biggest key to better health and cancer survivorship.

Committing to finding ways to help navigate cancer patients in their journey has been Kim and I’s strongest advocacy in the last four years.  MyLifeLine.org and their commitment to the cancer patient and caregiver have blessed us. Kim serves on their board of directors and seeing them grow and become stronger has been a gift.

My belief is that we are on the verge of some amazing cancer successes. Cures, improved treatments and partnerships are all very close to some spectacular findings and answers. My only wish is we would find more unity and more teamwork to all the talented people, doctors and committed organizations that I’ve meet and talked with in the last four years.

I hope that we in the future can find more dollars and innovation for the aftercare of treated patients. I believe this has been an area that has been left behind and we need to gift the cancer patient more love after treatment. His or her hand still needs to be held and given guidance on what their bodies are going through and how to be strong and confident in finding answers to questions after treatment.

It has been a great 4 ½ years of learning, but I today stand amazed how much work is still to be done.  Cancer is a mutation and we must constantly work to get ahead and stay ahead of its changing personality.  From stem cells, bone morrow, integrative care, navigation, nutrition and many more cancer situations, I hope to continue to grow and find ways to help the cancer patient. Many cancer patients have become better and stronger because of their journey. I know I have!

GEORGE

MyLifeLine.org Ribbon

Got Oncology Social Work?

This blog post is by Ann Fairchild, LCSW and member of the Oncology Advisory Council for MyLifeLine.org.

The Oncology Advisory Council is comprised of professionals in the field of Oncology including Oncology Doctors, Nurses and Social Workers. This group provides advice and guidance on our program offerings to people affected by cancer, vets our cancer resources to ensure the information we are providing is from solid and appropriate resources and offer education  and awareness about the trends in the area of Oncology, so we may better serve the patients, friends and families using MyLifeLine.org.

“I wish I had known you were here sooner.” That was an oft heard heartbreaking message I heard from patients and family members as an Oncology Social Worker. Here is the deal: (start eerie music..) Oncology Social Work is shrouded in mystery in many cancer treatment centers. I could have neon posters, flyers and brochures promoting Oncology Social Work (OSW) services and they were too easily passed over for the medical information available in a resource room. That was my rude awakening when I was lucky to score a full-time job in a physician practice in Austin in the late 1980′s. Cancer treatment was just moving out of inpatient settings for many patients, and physicians discovered the need to have a Social Worker on site to address the issues that often fall through the cracks in a medical setting. I quickly developed a lot of humility recognizing that people were not at the oncology clinic to visit me! The much more urgent medical needs trumped my offerings for good reason.

Who needs an OSW, anyway?

At the risk of academic boredom, Social Work theory views a person within the multiple systems that define their lives. We view a person’s constitution as a result of their communities, homes, families, schools, spirituality, job status, financial situations, friends, etc. When making an assessment, a SW cannot separate a person from his/her environment. This is the most important distinction one can make about how a social worker can be of help in a medical setting. Cancer can devastate one’s life upon diagnosis. Even if a person is feeling well, most of the treatments they will undergo will create challenges in their day to day lives.

There are significant emotional reactions as well, for a patient and their loved one. There are practical concerns like managing to continue in ones role prior to diagnosis: Will I be able to work? Will I be able to take care of my children? Will I be able to stay in school? How will my family cope with my illness? How will my illness affect my financial situation? Will I be disabled? Will I be disfigured? Am I eligible for any support services? What if I cannot drive myself to treatment? What if I have no insurance? Should I apply for disability? Will my doctor discontinue treatment if I cannot pay? These are concerns that can be addressed by an OSW. As well, a good part of my practice is spending time with caregivers and loved ones of patients. Matter of fact, there was a consensus among the couples I worked with that posited that the cancer experience is harder on the caregiver/loved one than it is on the patient.

Can we talk about that Elephant in the Room?

“I am not satisfied with my doctor but I am afraid if I change doctors he/she will be mad.” “I intend to live to 100, but just in case, can we talk about what my disease will be like at the end?” “I want to create a legacy project for my infant daughter, should I not survive.” “My sex drive is on a road trip somewhere, how can I get it back?” “I am so exhausted, I am thinking of quitting treatment.” “Would you help me write my will and get power of attorney documents?” “My friends say I look great since finishing treatment…. Why don’t I feel so great?”

Oncology Social Workers are counselors. Most have a master’s degree in Social Work and a tremendous amount of expertise in therapy and counseling. Due to heavy caseloads, most OSW’s focus on brief format counseling and group work which is most compatible with people with cancer. The shock, anxiety, fear and grieving can be addressed by an OSW. Should more significant needs arise, your social worker can refer you to a professional in the community. Good news is that most OSW’s salaries are covered by the physician practice so there are no charges for OSW services.

OSW

Why pay attention to Prostate Cancer in September?

This blog post is brought to you by our friends at ZERO – The End of Prostate Cancer.

At ZERO – The End of Prostate Cancer, September is a busy time because it’s Prostate Cancer Awareness Month. To help save lives and keep families together, we are hosting 19 Run/Walk fundraising events, launching new educational programs for men and families, training leaders in our communities, visiting Capitol Hill, and sharing stories from our ZERO’s Heroes across the nation.

September is also Blood Cancers Awareness Month, Ovarian Cancer Awareness Month, Childhood Cancer Awareness Month, and a flurry of other activities that come along with the unofficial end of summer. So, why stop and give your time and attention to prostate cancer this month amidst all of these other important and honorable causes? It’s simple really; having a prostate puts every man at risk of developing prostate cancer at some point in his lifetime. As men age, their risk significantly increases and 97 percent of all new cases are in men older than 50. African American men are 2.5 times more likely to develop the disease and men with a family history of prostate cancer are also at greater risk.

This year, the American Cancer Society estimates that 233,000 men will be diagnosed with prostate cancer. If you know seven men, that means that most likely one of them will be diagnosed at some point in their lifetime. We will also lose nearly 30,000 men, one every 18 minutes.

The good news about prostate cancer is that when diagnosed at an early stage, nearly 100 percent of men will be alive in five years. As with all cancers the chances of surviving for five years decreases as men are diagnosed with more advanced disease. That is why it’s important for men to know the risk factors for prostate cancer – including age, race, and family history — and talk to their doctor about their own individual risk so they can work together to develop a strategy and plan.

We invite you to join us in our mission to end this disease that robs too many families of a father, husband, brother, friend, grandfather, or loved one. Check out our 10 Things Everyone Should Know About Prostate Cancer fact sheet and spread the word! To learn more about our activities this month, visit our website www.zerocancer.org and get involved.

We’d like to thank MyLifeLine.org for this opportunity to share.

1in7-infographic ZERO

One in seven men will be diagnosed with prostate cancer in their lifetime. For more information, visit ZERO – The End of Prostate Cancer.

Roberta picture

Healing Spaces

This week’s guest blogger is Roberta Aberle, a MyLifeLine.org member. Born in Rapid City, South Dakota, but raised in Fort Collins, Colorado, Roberta Aberle has been surrounded by cancer her entire life. Diagnosed with the rare cancer, Primary Peritoneal Carcinoma Stage IIIC, on Leap Day, 2012; after a total hysterectomy in 2009 was performed to reduce her risk for developing cancer, Roberta has been both a fighter and advocate for rare, sub-types of cancer. “I’d love to see other cancers reach the level of awareness and fundraising that breast cancer has with the Susan G. Komen Foundation,” she says. Roberta has been on multiple treatment regimens since her diagnosis in 2012, with the goal remaining to see some phase of remission. Her treatment has included clinical studies, surgery, intraperitoneal/hyperthermic chemotherapy, but has also incorporated many holistic approaches such as journaling, meditation, aquatics and nutritional strategies. Her primary goal is to not only reach remission but to use her experience to help demystify the cloak around cancer for caregivers by speaking honestly and authentically about the insights gained living the role of a cancer patient.

In my travels this week, it was a huge reminder of how radical the pace of life truly is. Especially in places of mass transit, like an airport, the flurry of people racing one from place to another is astounding.  I used to be one of those people.  My life revolved around the next trip, the next big project, the next deadline, the next …. whatever.  I didn’t sleep enough hours a night, I worked too many long days, in fact, at this time of day on Friday, you’d sometimes still find me chained to my desk.

My weekends were ruled by all the errands and “need to do’s”, I would often say it was as if my weekends just ‘evaporated’ before I found myself back at work on a Monday morning far too fast.

It’s exhausting to even write about.

Then I got my diagnosis and so much of that life came to a screeching halt.  Of course, it picked up pace with other types of activities; tests, scans, labs, treatments, etc. And before I knew it I was back living a frenetic pace.  I even worked some days before my chemotherapy because I had a few hours beforehand.  That’s a little extreme even I can finally admit.

For some reason, this week I realized that I cannot possibly keep up with my old pace now.  I am too worn out from all of the tests, labs and appointments, too fatigued by the treatments, too weak from the assaults on my body.

But rather than feeling discouraged by these restrictions, I understand their purpose.

I need to heal.  I have taken in about as much chemotherapy as a person can and I kept right on functioning to a degree.  I have been out of weekly treatments for barely a month and yet I keep asking myself when I am going to feel stronger and more energetic.

Talk about expecting too much too soon.

This week I stumbled upon a variety of ways to help myself heal in the most unexpected ways.  Whether staring at a long stretch of road or even waiting out airport delays; there is the opportunity to focus on healing.  We have the power to create our own healing space in the midst of whatever surrounds us.  It doesn’t have to be a place, it doesn’t require tons of effort nor does it have to consume a great amount of time.

Instead of getting sucked into the stride of others, the nuisances of public places, the inevitable down time that comes with any commute, job or nearly any endeavor these days, I let my mind drift to a mantra or literally just focused on the purity of the moment to avoid the headache associated with racing around.  You don’t have to be able to go to a spa or sanctuary to escape the busyness of life. You can escape into your own healing space.

In flight, scrunched into a window seat, the flight oversold, overhead bins burgeoning and the requisite crying baby in the seat directly in front of me, I focused on the plumes of clouds that we climbed through, marveling at their majesty. The billows stretched as far as you could see, a virtual ocean of white, formations crafted from the swirling and fluid mist. It was like flying through a piece of art. The beauty of it brought tears to my eyes. Those big tears that literally cascade from your eyes and saturate your face.  I found a space to heal.

At nightfall with the satiny feel of cool linen against my skin, atop a cushiony bed with the comforting smell of the night air wafting in the window brought another brief moment to reflect on healing.  Breathing in the scent of fresh-brewed coffee before turning on any technological gadget, yet another space to think about healing.

Woven in throughout the day, in the simplest of acts, it is possible to escape the rat race.

It doesn’t feel like an effort, it doesn’t feel forced, it doesn’t even feel like another thing I should make myself do.  It feels natural and welcome.  By sheer observation and trying not to contrive something else to add to my routine as a goal or a task, it is possible to just use awareness of your surrounding as a means to heal.  The colors, the sights, the scents, the patterns, the vibrancy, the sounds, the tastes, are all facets to appreciate in any situation.

All it takes is the recognition to pause, to find what is unique in every moment that can contribute toward healing and remind myself, “I am healing.  I am healing.  I am healing.”healing spaces