Monthly Archives: October 2014

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Maintaining a Career During Cancer

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.

I have always been the type of person whose identity is deeply entwined in her profession. When asked who I am or what I do, invariably, my answer would be about my role, my employer or my latest project.  My largest friendship base is by far comprised of people I’ve worked with, some I regret to admit from over a decade or more ago you know who you are and how old you are too).

I’ve always taken great pride in my work and more specifically, my work ethic – a gift from my father – and work I have, like a dog at times.

It was a radical life change 6 years ago when I completely uprooted myself from my old profession (my “old” profession not the “oldest” profession) into healthcare. I left the high pay, the extravagant lifestyle, the travel (ok, so it is sounding a bit like the oldest profession in the world…) of marketing for some of the most prestigious companies in the country to go back to school, volunteer and earn only entry level salary. Ouch.

It was a disorienting and humbling period for me. I was all of sudden a novice. Had limited marketable skills and education in the grand scheme of hospitals and healthcare. The new landscape in which I worked was dizzying, not only about clinical care, procedures, equipment, medications and 10 different types of facilities, but government regulation, legalities, operations and the dreaded billing & claims. I was truly on foreign sands.

There were many days when I questioned my sanity about making the shift. I never thought I could be a master of such a large, complex puzzle like healthcare.

But in time, I gained ground.  I got versed, I could sometimes spew a span of words that some people would ask what type of medicine I practiced, as if I were a doctor or nurse. How flattering.  I built a solid reputation for myself again in a new work environment and educated myself tirelessly in my goal of becoming a competent, capable, healthcare quality improvement consultant.  Before I knew it, the pay was back on par and the exotic lifestyle went back to what it was.  Traveling coast to coast for work, working long irregular hours, weekends, nights but truly relishing every minute of it.  I love to work.  I love my work.

But then I got cancer.

Work was still primary in my life, but I had to come to work in the context of my disease. At first I went about it like I could manage it all, Oncology appointments, procedures, treatments, tests, labs, etc. until it was clear I couldn’t.  I missed a day here and there and then more days and then more.  Finally we established a schedule of what days I could and couldn’t work.

My best fortune in this past year has been my job at University of Colorado Hospital, where they have allowed me to function in whatever way I have needed. To shift and juggle, to be here or not, to do the work on my timetable and structure and never once pressuring me into doing too much, too soon.

For that, I’ve had it easy.  For that, I am grateful to have my work.

It provides the right degree of distraction and normalcy as my colleague Susan said today.

And it does.  Thank God it does.  Because for a woman like me who is so wrapped up in her career, it is essential to who I am.

But yet, work is harder than ever.

I am right back to the point of feeling disoriented and humbled every day. It takes more focus, more concentration, more energy, more attention that I can sometimes muster.

I need, no, require, the distraction and normalcy, but I can never predict what my body and mind choose to feel on any given day.

I can be right in the middle of crafting an e-mail and go entirely blank on the topic or the purpose.

I freeze in a presentation or meeting.

I take notes that I cannot decipher an hour later.

I make errors that I would never have made a year ago.

All due to the side effects of treatment and the preoccupation with a disease that can take every ounce of your energy to beat.

How do you do both?  How do you maintain a career and beat cancer?

I find myself working 10x harder now to accomplish about half of what I normally could. I get frustrated with myself, I get down on myself, I feel less capable.  No one is putting these pressures on me, I do it to myself. I cannot name a single person at work who thinks less of me or is unsatisfied with what I can do, which is a lot less than usual.

So why can’t I adjust my own expectations accordingly?

Why am I so driven to continue to perform at the level I used, when it is emotionally and physically impossible?  There is no person breathing down my neck telling me to do or be more than I can right now. Some days the body is willing but the mind just can’t function.  Some days it’s the exact opposite.

When it’s a matter of life and death, does work really even merit the stress it harbors?  Of course, you need the income to pay the medical bills, but setting that aside, is it important to spend your days working or living?

Maybe that’s why so many people change their careers after a life altering illness. Maybe it’s different for me because my work always has equated to so much of who I am.

It’s a part of my essence.

I don’t punch a time clock.

I don’t do the same job, over and over, day after day.

My job is not 9 – 5 with the luxury of an hour for lunch.

My work is not something I can do halfheartedly.

Never has been like that and I have never wanted that.

My job is consistently ambiguous, consistently demanding, consistently complex, and consistently intricate.

But in the framework of cancer at the forefront, it is harder and harder for me to do what I do.

Yet, I can’t walk away from it.  I love my work.  I have to figure out how to adapt to what I can do. I’ve done the career change; I don’t want to do it again.

I have been in this battle for 9 months, my treatments will last another 10 months. I am not even at the point of no return.  How much harder will it get to do my job?  How much more time will I miss?

What do you do, when you can no longer do what you are meant to do? You adapt, you modify, you redefine expectations. Not an easy task for a woman like me.

I’ll keep you posted as I figure it all out…..

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New Beginnings After Breast Cancer – A Survivor’s Story

Gina Costa-Goldfarb is a breast cancer survivor and Certified Professional Coach and Energy Leadership Master Practitioner. She is the founder of New Beginnings Coaching Services, LLC. Gina helps women diagnosed with breast cancer cope, step-by-step, with the emotional and physical challenges they experience, so they gain confidence and feel in control of their life again. You can connect with Gina on her website, Facebook, or email gina@newbeginningswithgina.com.

So much comes up when we receive our initial cancer diagnosis. I remember receiving mine and I immediately reframed it to taking cancer out of the equation. I told my husband right there in the moment: “this isn’t cancer, this is the boob job I always wanted.” And yes, the tears definitely fell from my eyes throughout the experience, but I kept an Rx of humor in my back pocket along with many other coping skills I had collected over the years.

For me personally I was able to embrace a positive mindset immediately because of the lengthy and rocky relationship I had with cancer. I was caregiver to my mother who died of complications of being treated with chemo for her stage 4 ovarian cancer in 2001. She passed away and 3 days later I gave birth to my first born. To say the least, this was a very dark period for me but when I came out of it I vowed to turn all of my negative life events into positive ones. This was a conscious choice that I made on how I wanted to live my life moving forward. It helped me shed so much of the negativity that surrounded me as a child. It further lead me to being very proactive in my own health, pursuing genetic testing and becoming a top individual fundraiser for women’s cancers for an organization based in NYC and LA. Then I had the experience of my sister being diagnosed with breast cancer and a year later I received the same diagnosis.

I had a lot of tools to get me through my diagnosis and treatment. However, I still went through the entire process. Initially, I had feelings of being overwhelmed and anxious, followed by doubt and a little depression which ultimately lead me to acceptance. I had doubts on what my life would look like “after cancer” and how people would receive me. Getting through and to all of these emotions is key to getting to a place of peace and acceptance. When you get to that point you are fully able to accept what has been placed on your doorstep so that you can put your efforts into working on what you can control in your life and letting go of what you can’t. What you can do is take control of your health and your life from this point on.

Giving up control of “doing it all” for the sake of others and getting support is also critical, followed by self-care. There is no other way to fully heal unless you learn to go down this path. So many of my clients have trouble giving up the old mindset of: “If I don’t do it myself, it won’t get done” or finally coming to the place where they realize everything they have done up until this point in their lives has been to please others and they rarely do anything for themselves first. They get to a place where they realize that it is “OK” to allow them to receive!

You see, with a cancer diagnosis, not only do thoughts and emotions come up around a diagnosis and treatment, they also come up about who you are at your core. I am not one to minimize the impact of a cancer diagnosis (I saw my mother through her last days in hospice, they are forever etched in my mind and I have had my own physical and emotional journey with breast cancer) but I try to help my clients come to a place where they can see the opportunity to create awareness of who they are,  how they are living and how they can use this life altering experiencing to reassess their lives to reduce stress which feeds not only physical healing but in the mind as well and making choices to pursue the life you have always wanted to live. This can include looking at yourself and why you act as you do on a deeper level, looking at your relationships to see which serve you and those that do not, looking at the patterns in your lifestyle that have kept you on the same page and left you wondering why you are still there and so much more. When you go to your core to find out who you really are vs. who you think you should be, magical things can happen.

The next step is taking action and making choices to change your life. The choice is yours!

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Gina is the founder of New Beginnings Coaching Services where she helps women diagnosed with breast cancer cope with the emotional challenges they face.

 

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MyLifeLine.org Announces Connecting for Cancer

MyLifeLine.org launched a new project this October, called Connecting for Cancer. The project was designed to honor MyLifeLine.org’s members, raise vital funds to support our mission and increase awareness about the programs and services offered by our organization to cancer patients, caregivers, family and friends. We chose the month of October to show our support for Breast Cancer Awareness Month and also to honor all people affected by cancer.

 Connecting for Cancer connects philanthropic businesses with cancer patients to match them with their greatest needs. All of the patients matched for the program are members of MyLifeLine.org and use our site regularly to update family and friends on their progress, treatment updates and overall wellbeing, as well as coordinate volunteers and raise funds for their medical costs. The goal of the project was multifaceted; the participating businesses made a donation to MyLifeLine.org to support our mission of providing free, personal and private websites to people affected by cancer. In addition, they donated their services to the patient they were matched with by MyLifeLine.org.

To read about the patient’s stories and more about the philanthropic businesses, visit the Connecting for Cancer website. You’ll hear about how Roberta Aberle, a featured blogger for MyLifeLine.org, got a new hair style from Harmony Salon, located in the Denver Highlands, as years of chemotherapy have left her hair in need of a makeover. The story of Kelley Gleason in featured as well, and how frequent trips to treatment facilities have left her car is need of help, and how Shortline Auto Group of Aurora, CO is donating new tires to her car. Another patient participating in Connecting for Cancer is Kris Pogue, who is connected to ClIintel, for meal delivery and professional family photography in honor of her brave fight with ovarian cancer. Our fourth patient in Connecting for Cancer is MyLifeLine.org’s very own, Tricia McEuen, in honor of her five year anniversary as a cancer survivor. Adjusting to her normal, Tricia was paired with Crestone Capital Advisors for financial advising and expertise to get back on track after her breast cancer diagnosis.

MyLifeLine.org is grateful for the participation of businesses in Connecting for Cancer and invite you to learn more about the project!

Connecting for Cancer MyLifeLine.org patients

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Study Finds Cancer Diagnosis Can Lead to Mental Health Disorders

A study published Monday in U.S. News and World Report, found that one in three people diagnosed with cancer experience a mental health disorder, such as anxiety or depression. Researchers in the study conducted interviews with more than 2,100 individuals with cancer between the ages of 18 and 75. This study reinforces the importance of the mental health of cancer patients—the core of MyLifeLine.org’s mission; to provide the online platform for social and emotional support for all people affected by cancer.

Here is a summary of the findings from the study published on Oct. 6 in the Health section of U.S. News and World Report:

  • About 32% of cancer patients experience a mental health disorder, while general population mental disorder rate is much lower at 20%
  • More than 40% of patients with breast, head and neck cancer and malignant melanoma had at least one mental health disorder
  • The lowest rates of mental disorder, around 20%, occurred among patients with pancreatic, prostate, stomach or esophageal cancers
  • Anxiety disorders is one of the most common mental health disorders affecting cancer patients
  • Breast cancer patients were twice as likely to experience a mental disorder than people with typically more fatal types of cancer, such as pancreatic or stomach cancer

MyLifeLine.org believes social and emotional support is as important as medical care in the face of a cancer diagnosis and provides anyone affected by cancer with a place to receive support for their mental health. Because every cancer patient should feel supported, every day we provide free, personal and private websites to help them easily connect with family and friends.

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You’re Not Alone. A Patient Advocate Can Help.

This week’s guest blog post is brought to us by the experts at Patient Advocate Foundation. Patient Advocate Foundation is a nonprofit providing professional case management services to those with life threatening and debilitating diseases by acting on behalf of the patient.

As most of us know, navigating the healthcare realm isn’t always easy. It can become especially difficult when a patient not only doesn’t know their options; they don’t even know where to begin. Often times when patients are diagnosed with a serious illness, they might not be familiar with available resources and payment avenues available to them.

That’s where a patient advocate comes in. Professional patient advocates support patients by working on their behalf to alleviate healthcare road blocks and barriers. Many professional

Professional Case Managers at Patient Advocate Foundation assist patients 8 AM-8PM EST Monday thru Friday.

Professional Case Managers at Patient Advocate Foundation assist patients 8AM-8PM EST Monday thru Thursday and 8AM-7PM EST on Fridays.

patient advocates specialize in a particular area of expertise, allowing them to further benefit the patient.  Patient advocates can be also found in the form of a caregiver, family member, or close friend who acts as a liaison on behalf of a patient dealing with healthcare issues. With the help of an advocate, patients and their families are able to focus primarily on the medical recovery process.

There are many different avenues an advocate can use to help a patient. By researching the specific skills and services offered by various advocates, the patient will be better informed in their decision to choose which private advocate or advocacy group is right for them.

Patient advocates will commonly help patients address healthcare barriers by:

  • Mediating payment options between patient and providers including debt reduction and payment plans,
  • Navigating complex healthcare processes like the insurance reimbursement system,
  • Exploring opportunities for drug coverage, including connecting patients with the appropriate resources,
  • Ensuring patients are informed about their employee rights as related to their healthcare,
  • Assisting with insurance appeal submissions after coverage is denied,
  • Providing educational resources regarding patient options,
  • Evaluating eligibility for various insurance coverage options for uninsured patients,
  • Matching patients with potential clinical trials applicable to them.

Depending on the advocate or advocacy group, there may occasionally be a fee associated with these services. Patients should ask the advocate up front how fees are calculated before using their services to avoid financial surprises and ensure a line of communication is open at the start of the relationship.  A good patient resource to consult before hiring a paid advocate is The Alliance of Professional Health Advocates or the Professional Patient Advocate Institute. The Alliance of Professional Health Advocates provides patients with the average cost when hiring an independent patient advocate or navigation service.  The Professional patient Advocate Institute provides a search tool to help you find private for-profit patient advocates in your local area.

Patient Advocate Foundation (PAF) is another option to consider when searching for patient advocates. PAF helps those with cancer or other chronic, life threatening, or debilitating diseases with issues involving access to care, maintenance of employment and preservation of their financial stability.  By helping the patient navigate through their healthcare obstacles, they can maximize their physical and emotional well-being. All services are offered free of charge, and can be initiated by the patient, caregiver or even a patient’s provider.  PAF’s case managers are skilled mediators and assist patients of all ages, including pediatrics, no matter what insurance status they have, nor where they are located in the country.

No matter which option you choose, a patient advocate has the knowledge to guide you through complicated and difficult healthcare roadblocks. You are not alone in your fight. A patient advocate can help.

For more information about Patient Advocate Foundation please visit www.patientadvocate.org/gethelp or call toll free at (800) 532-5274.

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