Balanced Living with Cancer

One young family’s quest to find balance while living with cancer

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My Silver Cloak

January 7, 2012 | 14 Comments

I met my Mom and Dad at our local hospital’s emergency room (ER) the other night because she had developed an infection in her arm that was causing her to get septic.  For most people a simple cut on a finger would not be a big deal, but my Mom has lymphedema, a result of surgery for breast cancer 13 years ago.  She spends much of her time working on her arm to keep the lymph fluid draining to prevent such infections.  It’s a daily annoyance for her; I am sure a reminder of her experience with cancer.  The same type of cancer that took her mother’s life, the same type my younger sister has had to endure.

I’ve had my fair share of ER experiences over the past nine years, ranging from my husband’s spontaneous intestinal bleed to his numerous unexplained high fevers.  I could write the book on how to be an engaged waiting room participant without losing one’s cool.  The wait this time wasn’t too bad.  There was an air of distraction, I think, because of the ensuing holiday weekend.

What caught my attention wasn’t the anxious child with an apparent ear infection, or the woman who was visibly uncomfortable pacing in the corner, or the teenager in the wheelchair looking despondent, or the woman in pain sitting across from us with tears covering her cheeks.  It was the loved ones with their ill family member that held my attention this time.

It was the worn out mother with the child, the hawkish husband with the woman walking in pain, the withdrawn parents of the teenager in the wheelchair, and the anxious parents with the woman crying.  It was my Father, with my Mother.

Physical hurt is, for the most part, apparent.  It presents with visible signs and symptoms.  It gives medical professionals information to work with and visibly objective measures for improvement.   Emotional strain, however, is relatively silent, insidious, relentless and nearly impossible to quantify.  If left unattended it changes moods, behavior, breaks down communication, strains relationships, isolates, contributes to feelings of anxiety and worry, and causes long-term, often permanent negative physiological changes in the body increasing one’s risk for diabetes, heart disease, and, yes, even cancer.

Three years ago I was asked to present the results of a national survey on American’s views of food and nutrition at a large conference.  From the airport to the convention center I found myself riding in a cab with a well-respected colleague and researcher in the field of aging.  She asked how my husband was doing and I shared we had just returned from four months away for his bone marrow transplant.  She paused, twisted around in her seat and looking straight at me told me I needed to pay attention to my own health.  Her words were riveting and those I will never forget.  She shared that her research had consistently shown within 18 months of resolution of a loved one’s illness, the primary caregiver typically finds themselves newly diagnosed with their own health problem, often cancer.  What she also found was the level of intensity and duration of the loved ones illness, the greater the risk and more severe the caregiver’s ensuing health problems.

Her findings, although unnerving, are not surprising given the short and long-term effects of stress hormones on the body.  Our body is designed to experience stress and react to it.  Stress can be positive, keeping us alert and ready to avoid danger.  However, stress can have negative long-term health effects when a person faces continuous challenges without periods of relief between the challenges.  The dangerous thing about high levels of chronic stress is how easily it starts to feel familiar, even normal.  You stop noticing its role in your life, even as it takes a heavy toll – affecting your mind, body, and behavior.

There is a lot written for caretakers most in the vein of “take care of yourself first so you are there for your ill loved one.” Sounds good, even true, but the realities are most caretakers don’t have the time or resources to care for themselves in the capacity needed to offset the long-term health consequences of shouldering the emotional strain that comes with constantly picking up the pieces surrounding a sick loved one.   If the loved one’s illness is chronic and wrapped in unpredictability, such is often the case with some cancers, it can be nearly impossible to gain emotional relief when the potential for crisis is always lurking.

Many have said there is a silver lining in adversity.  I say life becomes draped in a silver cloak when you live with cancer.  My cloak – I have had to adjust my approach to life. I now pick my battles.  I have learned that I cannot lead the charge on every one of my husband’s health struggles. I am finally accepting that my emotional drain will always be open as long as he is struggling.  I am learning how to wait patiently in an ER.

 

Copyright © 2012 Jeannie Moloo. All Rights Reserved

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Connecting the Dots

October 12, 2011 | 8 Comments

It was a week ago today that our 13-year old son shouted from the computer downstairs, “Mom, Steve Jobs died.”  A silence fell among the children and myself.  Their dad was not home.  He was in the hospital for his third surgery, in as many weeks, to rid an infection that has plagued him for 16 months.

Our 16-year old daughter came for a hug, our son at the computer came to the base of the stairs looking up with disbelief and confusion, our youngest began talking about his latest Lego creation, trying to bring life to the silence.

Mr. Jobs was diagnosed in 2004 with pancreatic cancer, had a liver transplant in 2007, and obviously a rocky road since.  He and his life with cancer had often been a part of our family conversations.   How did he and his family manage?  What was it like for his children to see their father ill yet carry on as if life were normal?

One of my husband’s physicians was a neighbor of Steve Jobs.  Over the years we had heard stories about their children’s shared sports activities, and smile, in an odd sort of way, knowing that Mr. Jobs too knew life with cancer.   He brought to our family this image of hope as he continued doing what he appeared to be doing well, create, invent, and live, with cancer.  In a strange sort of way his life provided a bit of reassurance for my family and me.  Now he is gone and collectively we feel his absence.

Last night I listened to his 2005 commencement address to Stanford University graduates.  If you haven’t had the chance I highly recommend listening to his inspiring speech.  There are many quotable thoughts that he shared, some of which have been circulating in the media since his death.  He told the graduates that the entrepreneurial spirit is about connecting the dots and he gave examples in his life where significant events connected together to enable him to create Apple Computers, NeXT, and Pixar companies.

His words, “You can’t connect the dots looking forward; you can only connect them looking backwards.  So you have to trust that the dots will somehow connect in your future.  You have to trust in something – your gut, destiny, life, karma, whatever.  This approach has never let me down, and it has made all the difference in my life.”

Living with cancer and its treatments can be challenging. Steve Jobs and his family knew this all too well.  I wonder the picture our life will draw when I look back years from now and connect the dots.

 

Copyright © 2011 Jeannie Moloo. All Rights Reserved.

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