The "New Normal"

This week we're sharing a piece originally posted last year by one of Hope Cancer Resources' Oncology Social Workers, Lisa Manzini-Pace, LCSW.

The term "New Normal" has a special connotation for people undergoing treatment and/or survivors of cancer.  Without their consent, they have been inducted into an intense and often baffling treatment regimen, one that changes their daily routines, expectations, interactions with others and ability to predict how they will fare during and after prescribed treatments.  This is a daunting trajectory and one best faced in small doses.

As human beings we seek to predict, quantify and control.  These instincts, while often previously successful, can be impediments to smoothly navigating the cancer treatment labyrinth.  Oncologists, who the patient seeks to trust implicitly, are often the first to admit that treatment involves commonalities but that each individual tends to respond in a somewhat unique manner.  The truth is that none of us working with cancer treatment have a crystal ball.  That said, here are a few observations noted by this writer courtesy of cancer patient wisdom and research.

Undergoing chemotherapy and/or radiation will test one’s metal.  Chemo induces various side effects but the overwhelming one mentioned is fatigue.  And a close second is chemo brain.  The former is a bone weary fatigue and the latter is a passing state of impaired memory and clarity.  It is essential that one lower his/her triathlon or quiz show expectations during these phases.  There will be good days and not-so-good days.  Learning to be gentle with oneself is as crucial as any pill one may swallow.  It is an art to be cultivated along with a stalwart sense of humor. 

One’s entire arsenal of healthy coping is there to be used.  This may include but is not limited to eating well, exercise (physical, mental and spiritual), common sense, resourcefulness, courage, compassion (self first!), joyfulness, intelligence, mirth, humility, faith, hope and love.  These are the aspects of you—unlike cells—that cancer cannot touch.  Use them in large doses.

Priorities will change.  Things that once seemed important are relegated to the back seat of the caboose.  To quote Arthur Golden in Memoirs of a Geisha, “Adversity is a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.”  Most  patients say that such experiences were the awakening of new strength and understanding.

Avoid the naysayers.  Cancer, rather like pregnancy, invites unsolicited confidences from others.  Some will be little gems to be treasured while other “stories” will be about fear, pain and darkness.  You get to choose who you will listen to and who you will wish well and send on their merry way.

Simply, remember that your "new normal" may vary greatly from that of another person who has dealt with a cancer diagnosis. Find your comfort zone and surround yourself with people who are going to help you stay there. 

Defining "New Normal"

This week we're sharing a piece written by one of Hope Cancer Resources' Oncology Social Workers, Lisa Manzini-Pace, LCSW.

The term "New Normal" has a special connotation for people undergoing treatment and/or survivors of cancer.  Without their consent, they have been inducted into an intense and often baffling treatment regimen, one that changes their daily routines, expectations, interactions with others and ability to predict how they will fare during and after prescribed treatments.  This is a daunting trajectory and one best faced in small doses.

As human beings we seek to predict, quantify and control.  These instincts, while often previously successful, can be impediments to smoothly navigating the cancer treatment labyrinth.  Oncologists, who the patient seeks to trust implicitly, are often the first to admit that treatment involves commonalities but that each individual tends to respond in a somewhat unique manner.  The truth is that none of us working with cancer treatment have a crystal ball.  That said, here are a few observations noted by this writer courtesy of cancer patient wisdom and research.

Undergoing chemotherapy and/or radiation will test one’s metal.  Chemo induces various side effects but the overwhelming one mentioned is fatigue.  And a close second is chemo brain.  The former is a bone weary fatigue and the latter is a passing state of impaired memory and clarity.  It is essential that one lower his/her triathlon or quiz show expectations during these phases.  There will be good days and not-so-good days.  Learning to be gentle with oneself is as crucial as any pill one may swallow.  It is an art to be cultivated along with a stalwart sense of humor. 

One’s entire arsenal of healthy coping is there to be used.  This may include but is not limited to eating well, exercise (physical, mental and spiritual), common sense, resourcefulness, courage, compassion (self first!), joyfulness, intelligence, mirth, humility, faith, hope and love.  These are the aspects of you—unlike cells—that cancer cannot touch.  Use them in large doses.

Priorities will change.  Things that once seemed important are relegated to the back seat of the caboose.  To quote Arthur Golden in Memoirs of a Geisha, “Adversity is a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.”  Most  patients say that such experiences were the awakening of new strength and understanding.

Avoid the naysayers.  Cancer, rather like pregnancy, invites unsolicited confidences from others.  Some will be little gems to be treasured while other “stories” will be about fear, pain and darkness.  You get to choose who you will listen to and who you will wish well and send on their merry way.

This disease touches everyone in contact with it:  patient, family, friends, co-workers, medical staff, clergy, etc.  For most of us this process is humbling and awe-inspiring.  We strive to take something substantive from it, many of us again and again.  There is one certainty - It will change us.  Let your new normal reflect your hope and courage as we begin this 2012.

"When will things be back to NORMAL?"

Many cancer patients and their families find themselves asking this question. Sometimes it's one of the first questions asked by new patients of doctors, counselors, and friends who have experienced their own cancer journey. Many times the question is asked over and over throughout the battle, and the available answers are few or unsatisfactory.

The problem with looking for a "normal" life after cancer treatment is that each individual's experience can be vastly different from another individual's experience, even when those individuals received the same diagnosis. Differences in socioeconomic issues, support (or lack thereof) from family and friends, location of treatment facilities and whether or not one decides to enter a research trial... all of these things, and many more, can contribute to the length of time it takes for patients to get back to a "normal" way of life after battling cancer and what that life eventually looks like.

Cognitive
One of the most-discussed long-term effects of cancer treatment involves cognitive functioning. Commonly known as "Chemo Brain", these effects are frustrating enough to make them one of the first things survivors bring up to counselors who are working with them to smooth transition from patient to survivor. Some common complaints patients share include:

• Forgetting things that they usually have no trouble recalling;
• Trouble concentrating, inability to focus, or being easily distracted;
• Trouble remembering details like names, dates, and sometimes larger events;
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task;
• Taking longer to finish things due to slower thinking & processing or disorganized thoughts;
• Trouble remembering common words.

There has traditionally been no real help for these cognitive challenges, and in fact, there's not really any clear evidence that they're caused by chemotherapy. Some people who suffer from memory problems after cancer treatment still score well on cognitive testing, and many of the things mentioned by patients are not even noticed by most of their friends and family. Many doctors will only "diagnose" Chemo Brain if the symptoms don't go away over time, but the reality is that many patients do find a certain amount of memory loss and difficulty completing tasks or learning new skills to be part of life after cancer treatment.

Physical
Fatigue is another issue that many patients think will only be a short-term problem as they are undergoing their treatments. In reality, the speed at which our bodies recover from the onslaught of medications, surgeries and radiation treatments it has been put through over the course of several months also varies greatly from individual to individual. The one constant that most patients agree on is that the recovery doesn't happen fast enough! It's important for patients (and their loved ones) to recognize that support may be needed for many months after treatments end, and that it's okay to take it easy for as long as necessary. If there has been a need to take time off work, going back on a full-time schedule might need to be delayed or done a little at a time. A healthy diet and exercise routine will continue to be important, as well as getting plenty of rest. (i.e. don't do away with those naps just yet!)

For some survivors, there are also physical scars from surgery and radiation and/or long-term physical impairments and alterations made to their bodies. A former cancer patient may have to become comfortable with a new appearance or learn new ways of performing common daily functions the rest of us take for granted. These kinds of changes can be challenging at best, and their emotional toll can be heavier than the physical scars themselves.

Emotional
1 in 4 people will be diagnosed with cancer in 2011 according to American Cancer Society estimates. That means it's highly likely that you or someone you know will hear the words, "You have cancer." this year. Nothing can prepare a person to receive a diagnosis that can be potentially fatal. And even when a patient has successfully made it through treatment and is declared "cancer free" there is still a tremendous amount of residual worry and frustration to deal with.

The fear of recurrence is also a very real emotional burden for every cancer survivor. Some cancer diagnoses, like bladder and some brain cancers, carry a high probability of recurrence. Others require regular follow-up for many years after treatment ends. Every single time that patient goes in for a follow-up, there is a worry that doctors could find something that will cause the patient to require another round of treatments. Even common aches and pains that have nothing to do with cancer can bring on fearful speculation and worry.

So, how can a patient find their way to their own "new normal"? 
It's important from the very start to have a strong support network. Friends, family, church groups, or even followers of a blog or Facebook page can be a tremendous source of strength, advice, and "good vibes" during cancer treatment and beyond. Support groups are a great place to start building some of these helpful relationships if a patient doesn't already have them in place. If you're in Northwest Arkansas, our social workers are tremendous resources. We also provide a list a local support groups on our website. National organizations such as StupidCancer.com and LiveStrong.org have navigation and support services available if you're unable to find a group close to you.

As a patient becomes a survivor, the support doesn't have to end. Many groups are populated by survivors who are willing to provide the encouragement and advice a newly diagnosed patient needs. A person living with regular follow-up appointments can find a great deal of comfort in that kind of group as well, as they continue to deal with the "new normal". Perhaps one of the most important things a cancer survivor can do is give them selves time to redefine themselves. Time may not really heal all wounds, as the old adage says, but it does provide a good lens with which to examine what life should look like in the wake of cancer treatment.