Coping With Cancer: RECALCULATING Your Life

(Guest blog by Judith Zamost Grossman)

In July 2011, my Garmin became my best friend. Visiting the Hudson River Valley for the first time, without a map or computer directions, my husband and I knew that our GPS system, affectionately known as Hope, was our only hope. Each day I typed in the addresses or names of places we planned to visit, and Hope came through every time.

  

Occasionally we would decide to go to a local restaurant or store, and when we swayed from Hope’s directions we would hear her say, “recalculating.” She would figure out where we were and set us on a new path. At one of those moments, I looked at my husband and said, “Recalculating – That’s how I’ve had to lead my life for almost two years.”

I am a cancer patient fighting a very rare form of cancer, known as liposarcoma, which is a soft tissue sarcoma. I fought and won battles against liposarcomas in my right thigh and groin in 1995 and 1999, and for ten years I lived a wonderful, normal life with my husband and two daughters.

In 2009, another liposarcoma was found in my groin, beginning a journey involving chemotherapy (with the requisite hair and weight loss, low blood counts, blood transfusions, mouth sores, hemorrhoids, sleeplessness…) followed by a 10-hour surgery, hospital stay, recuperation, physical therapy, weight gain, hair growth and entry back into the world. Would I have ever believed then that there could be a recurrence of the cancer? Well that’s what happened - this time with surface tumors on my thigh and one on my right lung. Back for more surgeries, 40 rounds of radiation of my thigh, and then a post-radiation MRI and CAT scan, which revealed a new tumor on my lung. On to more chemotherapy, which unfortunately still didn’t get rid of (or even shrink) the tumor. And then on to Cyberknife, which may be slowly working.  My journey continues…

So why do I say that recalculating is how I’ve had to lead my life? Because it’s the only way I’ve been able to remain sane through this nightmare I’ve been living. Let me explain.

Although I would say I am, regrettably, a pessimist at heart, I believed last year that I would be in remission following the months of chemo and difficult surgery I endured. I never thought otherwise. I expected to pick up with my life.

I was wrong and had to deal with the cancer returning just a few months later. This time I realized my life would not be the same, and I think I subconsciously started to recalculate my thoughts and the way I approached my life.

I want to share my philosophy on recalculating with other cancer patients and those living with serious disease. Maybe what I have learned will provide some help and solace to you.

RECALCULATING Treatment: It’s important to understand that certain treatments work better on some people than others. Forget about the numbers you’re given (“it works on 50%, so the odds are good”), because the odds aren’t often good enough. Cancer is an evil intruder that is often stubborn and difficult to beat. Be prepared to change treatments mid-stream and go with the flow. Maybe one of them will work.

RECALCUTING Expectations: So the doctor told you that your treatment will start in a week. The sooner the better, you think. Then you learn that your insurance company is questioning the treatment, asking for all kinds of documentation, and dragging its feet. Next week becomes three or four weeks later, while your tumors seize the opportunity to grow larger. Recalculate your expectations because things usually don’t go the way you imagined.

RECALCULATING Daily Routines:  I feel fortunate that I haven’t had to recalculate my daily routine much of the time.  For me, being able to continue working (except for the times when I feel sick from treatments or am post surgery), is a welcome relief.  Focusing on things other than my illness helps me get through the day, and work is a reason for me to get out of bed in the morning.  However if work isn’t for you, recalculate and try to find something you enjoy doing when you’re feeling well, whether reading a good book, watching old movies, seeing friends – maybe attending a support group – whatever is right for you.  

RECALCULATING Friendships and Relationships:  Having cancer affects your relationships with others. Normal conversation changes when you’re worried about your next treatment, another tumor, whether you’ll be here next year… It’s harder to talk with others about things that were once normal, because your life has changed so dramatically. It’s okay to tell friends and loved ones that you need your privacy and will be back in touch when the time feels right. Sending an occasional email update (always best to blind copy the recipients) can be an easier way to stay in touch. Or writing a blog if you’re up to it. Taking care of yourself and your emotions, and being less concerned about others, is paramount now.

RECALCULATING Plans:  Planning vacations, buying theater tickets, and making dinner reservations is a normal part of life for many. Looking ahead to good things keeps you going when work gets tough, kids are demanding, and the everyday stresses of life take over. It’s best, however, to forgo planning when dealing with cancer. With changes in treatments and schedules, unexpected side effects, and many doctor appointments (just to mention a few kinds of interruptions), it’s difficult to know your schedule a week in advance, no less months in advance. Recalculate your thinking and enjoy a last-minute getaway (good deals can often be found online) or take a trip by car. (It can be a relief not to have to go through airport security, and packing is so much easier when traveling by auto.) Want to go to the theater or a sporting event? It’s not necessary to always buy tickets in advance – see what’s available the day-of, and you may be nicely surprised.

When I first started writing this piece, I read some of it to a dear friend who had battled another rare type of sarcoma. Much of what I wrote resonated with her, and something she said particularly resonated with me. She said that to get through many of life’s challenges (not just illness), individuals need to recalculate their thinking – whether to cope with the death of a loved one, handle unemployment for a prolonged period of time, or get through a divorce. Without recalculating, we are more apt to get stuck in a myriad of emotions that could end up paralyzing us. Recalculating is a way to rebalance oneself to survive whatever the challenge.  

HOPE for the future is the only thing I will not recalculate. I need to keep this resolve for all of the battles I have yet to fight.

I hope you try recalculating in your life. It might just help you find your way.

If you wish to reach me, email judyzgrossman@gmail.com.

© 2011 Judith Zamost Grossman   All rights reserved.

Therapy is a Partnership

Last week I wrote shared that therapy works. This week I write about the necessity and power of the therapeutic partnership.  

Individuals seeking healthcare often take a passive approach to recovery. Our pharmacologically dependent society directs us to “Get a pill to make it go away”.  In therapeutic situations we expect practitioners to, “Do what they do so we will get better.” However, when we delve into this thinking, we know nothing is that easy. Experiencing a quality of life takes work. Recovery takes work. Maintaining and improving our health also takes work. Few things of worth come automatically and if they do, keeping them, also takes work.

At Healthrough Action, we work to create a partnership in recovery and health maintenance. We as practitioners listen to the individuals, educate them about their condition/s and how they can be proactive in addressing the illness and its’ consequences. The skillfulness of the practitioner is essential yet regardless of how skillful a therapist is, without the participation of the “patient”, less will be gained and little will be sustained.  

Ask yourself the following questions. “What does recovery mean for me?”  ”What can I do to help myself feel better?”  “What interferes with my participation in my therapy program or for that matter, managing my overall health?”  When we explore the answers to these questions, together we work to overcome your barriers to restored and sustained health.   

Be your own hero by following a home exercise program and assert your newly learned skills and abilities into your everyday life.  Remember, recovery is measured not by range of motion but by how successfully you re-engage in your life. As Helen Keller said, “Life is an adventure or nothing”.

Occupational Therapy Works

Positive results abound! This past week has been both satisfying and gratifying. My patients are indeed moving better, thinking better, feeling better and participating more fully in their lives.

The first case is a 6 year old girl who was referred to occupational therapy for what is termed, “tactile defensiveness.” When someone experiences this sensory processing disorder, s/he has a limited tolerance for things rubbing against their skin and sometimes things in their mouth. Each case is different. In this case this young girl has been unable to tolerate clothing around her neckline, waist, groin, and feet. Straps of bike helmets bother her so much that as much as she loves to ride her bike, she chooses a less irritating activity. Getting dressed and arriving at school on time has been traumatic for both this child and her mother. Desperate and exasperated, the mother called several weeks ago for an immediate appointment. Treatment began including both the development of a sensory diet and behavior management. Each week the dressing got a bit easier but the last frontier was her feet. Seamless socks and carefully chosen sneakers, put on only once her sensory system was primed, allowed the breakthrough. I received a breathless, excited, telephone message from this little girl thrilled to have her socks and new sneakers on her feet. This week we will have a race down the hall both clad in our sneakers and socks.

  

On a completely different front, a woman came to my office, again about 3 weeks ago, with complaints of daily headaches.  The doctor felt sure it was not coming from her cervical spine and sent her a headache specialist. Before seeing this specialist, we did an assessment and found severe tightness of the muscles around her neck and upper back, an asymmetry in her posture, and generalized weakness. We began with soft tissue mobilization and neck exercises.  After two such treatments she reported that she hadn’t had a headache in three days although she did have more neck pain. She also reports improved awareness of her posture and neck position. Medication that she has been using over the last six months was not needed. The appointment with the headache specialists was cancelled.  

Three treatments have eliminated the need for expensive testing and money for pharmacological solutions. Back and neck health move to the forefront. A woman, who came with certain hesitancy, now leaves with a smile.  

Therapy works.  It is a partnership between the therapist and the individual.  It calls for hope and draws on resiliency. The result is the ability to step back into life more fully and with less effort.

Life through the Lens of Learning

For the past 3 weeks I have been immersed in both teaching and learning. For five years I have been teaching Temple University OT students about motor learning and neurodevelopmental treatment.    It is an intense 2 weeks, equaling 20 hours of teaching, and though it creates mild havoc in my schedule, I love it. 

Why, with all the added intensity of preparation and teaching do I enjoy teaching so much?”  By asking myself this, I realize that teaching helps me assess what I know, what I don’t know, how I can learn what I don’t know, and what is important to teach. It is exciting to read and learn in my profession as well as other related fields.  Then I enter the classroom.  Thirty-four graduate students open up and engage with me and their own learning.  

A day later I am a participant in a workshop on ADHD and a week later a certification program for a skill building program for caregivers of individuals with Alzheimer’s and other related dementias.  The tables are turned, I am the student; I open up and engage and learn.  

I complete this period with new energy, information and ideas.  I immediately begin to apply my new learning, testing it, playing with it and integrating it into my knowledge-base.  This exchange as teacher/learning is the perfect paradigm for life, regardless of your occupational roles, whether you are a teacher, parent, student or worker.  Every day offers us lessons to learn and opportunities to teach, directly or through role-modeling, and in doing so we grow and flourish, find satisfaction and contribute to those around us.  

Actions Speak Louder Than Words

In my last blog I wrote about balancing work, rest and play and gave several suggestions. Theoretically and intellectually we know what we “should” do, but actually doing it is often a very different challenge.  Building positive habits and routines have been a part of occupational therapy from its beginnings.  During difficult times in our lives we often lose the ability to participate in the positive habits that had previously been part of our lives.  

When visiting a health spa several years ago a health education said it took two weeks to create a habit or routine and three days to lose that same routine.  It hardly seems fair but life and health is not about being fair.  It is about being proactive, responsible and consistent.  The uses of action plans have been used in various forms to help individuals create positive habits and achieve the goals they set for themselves.  

The action plan that I have been trained in is from the Chronic Disease Self Management Program created by Kate Lorig, at University of Southern California.  The formula, slightly modified, is as follows:  

1. What positive habit do you want to achieve?
2. Where do you intend to carry out this habit? (gym, pool, track, kitchen, etc.)
3. How often do you intend to do this?
4. How long do you plan to do this activity? (10 minutes, one hour, etc.)
5. How confident are you in integrating this new habit? (Use a scale from 1-10)

*If your confidence is less than 70% then you ought to look at the barriers that are present that will limit your success. Creating a positive network of support is critical for success.  Once you declare it, tell others in your support network and let them know how they can support you.

An example to follow might be:  

I will cook three healthy meals at home each week (Monday, Wednesday, Friday) when I get home from work. My confidence level is 60%.  

What are my obstacles? I get home from work too late and I don’t always have the right ingredients in the kitchen. Solution:

1. Shop for the three specific meals you intend to cook
2. Make all or part of the meal the night before.

My confidence level is now  80%. Make a declaration, follow the formula, and go for it. You will be thrilled that you did!

Holding Life in Balance

For many of us holding life in balance is a challenging endeavor.  Life moves quickly and there are endless activities and commitments that vie for our time and attention.  Mary Reilly, one of the early pioneers in occupational therapy discussed the need to balance work, rest and play and this has never been more relevant than it is now.  I thought it might be beneficial for all of us to take stock and assess how successful we are at achieving that balance.

The first challenge, at least in my life, is to untangle work, rest and play.  For many of us we bring our work home and sometimes bring home to work.  While searching for work related information on the computer, we become sidetracked and look up something we need for the house or the kids.  Groupon, Living Social and RueLa La send daily emails touting new fashion deals and social options.  Cultural and educational options also appear on our screen and before we know it we are emailing our friends to see if they want to take advantage of one the activities that are enticing us via email.  Conversely, when we are at home on our laptops or iPads, we just as easily get tied up in planning endless activities that keep us on the go.  Some may be more focused than I, and can therefore avoid getting bounced around from one thing to the next.  Scheduling play can become a job in itself.  Perhaps the underlying problem is that our work and play often include our computers and further entangle our lives.

Work demands seem to take up more time than ever. Companies are operating with fewer employers and the employees are picking up the slack and for many of us, we are happy to have a job at all.  We run from work to family answering everyone else’s needs and ignoring our own. It becomes challenging to find time to work out or go out with friends. Our health can deteriorate without us really noticing.  Sound grim?  The solution isn’t that difficult; it just takes some consciousness and commitment.  Here are a few suggestions:

Keep work at work.   If possible, stay a little later or go in a bit earlier.  If that is not possible, allocate a fixed amount of time at home so you don’t neglect the other parts of your life.

Schedule time to exercise.  Declare it.  If you have fixed times to exercise, you won’t let others activities upstage it. It is now believed that to optimize our health, we should exercise for at least ½ hour to one hour, every day. If you don’t have that much time, use the time you have.  

Find something truly restful to do each day and enjoy it.  You can take a walk, listen to music, read a book, play games, or watch a favorite TV show. Don’t end up spending hours watching things that don’t move you or inspire you.  

Watch a limited amount of news.  The 24 hour news cycle is meant to draw you in through continuous news cycles.  It often agitates the viewer and creates an undertone of anxiety.  

Get enough rest.  Sleep hygiene refers to the proper amount of rest, at fairly consistent times.  Develop a simple routine before sleep to prepare for sleep, signaling your body that it is time to shut down.  Avoid violent TV or computer work before going to sleep.  

Unplug from your technology at least once a week. Oh yes, and remember to stop, take a few deep breaths, and smell the flowers.

Masks

As Halloween approaches many of us are considering what kind of mask to don, in order to be, what we want to “be”.   What I know for sure is that nobody wants to be someone who is sick, unable or unwell.  At Healthough Action Inc., I see people put on many different masks to hide what is not right and not well. 

A man, who has lost much of his short term memory, hides behind the mask of “I don’t care.”  Regardless of what he is asked, whether it is his inability to return to work, having to sell his home, or his overall increased reliance on his wife, he responds with “I don’t care”.  Of course I know after working with him for 5 years, that he does care and cares deeply.  I help him reconnect with all that he loves and values.

A 6 year old boy who struggles with sensory problems and core weakness, problems which make it hard to sustain activities in school, hides behind the mask of “class clown”.  Why admit to having difficulty when you can get a few laughs.  Unfortunately, without the proper help, his poor behavior overshadows his skill development and it becomes hard to catch up.

There are those who may struggle to complete their daily tasks without becoming short of breath and others who may not be able to make a full fist due to arthritic pain.  These people wear the mask of their younger selves, denying encroaching health problems and becoming resigned to this diminished level of health.  Without intervention, they wake up one morning and wonder how they became so limited in movement and function. 

When celebrating Halloween it is fun to try on different masks.  Once the holiday is over we have to remember to take our masks off and face the challenges life presents.  In doing so we actually increase our ability to take control, choice from the available options and move toward a healthy and satisfying life.

Healthrough Action Inc helps you think better, move better, feel better and participate more meaningful in your life.