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Coping with Bone Marrow Failure Disease: Strategies for Maintaining

Your Emotional Health

Teri Pipe, PhD, RN

Mayo Clinic Arizona

March 26, 2011

Opening Intention

• En-joy our time

―Graciousness is acting on the belief that we have been given adequate time and ability to care for one another‖ (Victoria Moran)

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What We Know About the Symptoms and Quality of Life of

MDS Patients

FATIGUE 89% Bruising/bleeding 55%Night sweats 43%Bone pain 39%Fever 28%Skin rash 25%Weight loss 25%Work disabled 25% Restricted social & physical activities Most

Steensma et al. Leukemia Research, 2008, 691-698 (N=359)

QOL: Perception of Overall Health

Steensma et al. et Leukemia ResearchLeukemia Research, 2008, 691, 691-698

Stress and Coping

• Most people with MDS are psychologically healthy before and during treatment.

• Stress is a ‘normal’ response to difficulty, especially when potentially life threatening or life shortening illness has been diagnosed.

• Not a question of getting rid of stress/anxiety…it’s about learning how to manage or cope with stress.

(Schurermeyer & Scribner, 2009)

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What Causes Distress in MDS

Patients?

• Uncertainty - Not knowing what the future will bring

• Thinking about things that could go wrong

• Family - Wondering about the emotional toll. Not having the same responsibilities. Role change/confusion

• Worry about long-term effects of treatment

• Changes in physical appearance - Not feeling as masculine or feminine

• Medical System - Dealing with the medical system & insurance

• Finances - How to support myself and my family

(Schurermeyer & Scribner, 2009)

What We Know About Coping

• Each person has their own coping strategies

• Not every coping strategy is going to work for every person

• Some coping strategies are healthier than others

• What has worked for you in the past is likely to work now - so stick to what works and try to further strengthen the healthiest of your coping skills

(Schurermeyer & Scribner, 2009)

Less Healthy Coping

What doesn’t work well?

Deny or avoid crisis

All or none thinking

Avoid information

Repress negative emotion

Remain isolated

Remain passive

Focus on what is lost without balancing with gains

(Schurermeyer & Scribner, 2009)

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Healthy Coping

• Taking one day at a time & focus on the real

issues

• Realistic optimism

• Keeping a sense of balance

• Manage stress levels

• Accepting your feelings

• Using your support network and asking for

help when you need to

• Working with your healthcare team(Schurermeyer & Scribner, 2009)

When is it Depression?

•2 weeks or longer of depressed mood or not enjoying things like you used to along with

•Sleep disturbance

•Decreased interests

• Feelings of guilt

• Fatigue

• Impaired concentration

•Change in appetite

• Feeling slowed or speed up internally

• Thoughts of death or suicide

When is it an Anxiety Disorder?

•Worrying more often than not or problems controlling your worries

•Muscle tension

•Inability to relax

•Fatigue

•Irritability

•Inability to concentrate

•Sleep disturbance

•Having physical symptoms of anxiety = panic attacks

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Recall a time when you felt very well nurtured and cared for. Relive that

experience as fully as you can.

• What was it like for you?

• Performance

• Relationships

• Physical/emotional/mental experiences

What Gets in the Way of Living Like This?

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What Gets in the Way?

Obstacles

• Deadlines/lack of time

• Other people

• Money/resources

• Health concerns

• Unrealistic expectations

What is the Impact of These Obstacles?

Obstacles

• Deadlines/Lack of Time

• Other People

• Money/Resources

• Health Concerns

• Unrealistic Expectations

Impact

• Anger

• Anxious

• Tired

• Headaches

• Confused

• Irritable

…Stress commonly expresses itself as

resistance, tension, frustration and

negative emotions such as anxiety, anger

and sadness. This upsets our

physiological and psychological

equilibrium, keeping us out of sync

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Resilience

• John Reich, a social psychologist on the ASU team, adds this dimension:

“At the heart of human adaptation is

resilience, the ability to create a

positive world for ourselves, often in

the face of stressful life experiences,

and the ability to resist being overtaken

by negative experiences when they

seem to be overwhelming‖

Some good news: increasing our

resilience and positive coping

strategies can be learned and

practiced

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Mindfulness Meditation

Mindfulness meditation has been described as an awareness of moment-by-moment experiences that arises from intentional attention, along with a non-judgmental acceptance of the experience (Kabat-Zinn, 2005; Leigh, Bowen & Marlatt, 2005).

Mindfulness Based Stress Reduction (MBSR)

• MBSR is a structured educational program founded in 1979 by Jon Kabat-Zinn at the University of Massachusetts Medical Center

• MBSR focuses on mindfulness meditation training as a way to enhance individuals’ ability to cope with stress, pain and illness

• It’s about being ―here‖ – learning how to be totally focused on the moment and on the person or task with which we are engaged

“True silence is the rest of the mind; it is to the spirit what sleep is to the body, nourishment and refreshment."– William Penn

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Attitudinal Foundations of Mindfulness

• Non-judging: Impartial witness to your own experience

• Patience: Sometimes things must emerge in their own time

• Beginner’s mind: Willing to see everything for the first time

• Trust: Listening to your own inner self

• Non-striving: Back off

• Acceptance: Seeing things as they actually are in the present

• Letting go: Our minds like to hold on to thoughts, patterns, judgments. (JKZ)

Resonant Leadership (Boyatzis & McKee, 2005)

• Taking the time to dwell within, with our own thoughts, dreams and visions it places us in a position of strength

• From here we can navigate our strategies and actions more effectively

Mindful Ways of Being

―Living in a state of full conscious awareness of one’s whole self, other people, and the context in which we live and work‖

• Alive: awake, aware, attending to

• Hope: believe our vision is attainable

• Compassion: convey a sense of understanding

• (From Resonant Leadership, Boyantzis & McKee, 2005)

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Demonstration

• Breath awareness

• Positive emotion/ relive a positive moment

• Mindful eating

• Kindness tracking

• Gratitude practice

• Gentle movement

Practice the Power of Positive Emotion

• Choose a time when you had a positive emotion

• Re-experience it in your mind, heart and senses

• Dwell in that experience for several minutes

Application to ―Real Life‖

• Pick one of these practices to learn and incorporate

• Notice what happens

• Write it down

• Do you think you could use this with other people?

• What are the possibilities?

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What you have to share is

You.

Lasting Intention

• Gratitude for the ways we have available for caring for ourselves and each other

• Acknowledging that each individual has a path

• Dwelling in the stillness helps us know ourselves better and can make us more effective and loving in our many roles

Additional Tools for your Toolbox

• You have heard much of this before

• These tools are linked to science

• There are many common themes

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Follow Your Heart

Don’t ask what the world needs. Ask what makes you come alive and go do it. Because what the world needs is people who have come alive.

-Howard Thurman

Shift Perspective

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“I can't believe I was doing it wrong all these years. We must get the word out.”

How to Weigh Yourself

Simplify

None of us will ever accomplish anything excellent or commanding except when he listens to this whisper

which is heard by him alone." – Ralph Waldo Emerson

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Have Hope

“If it were not for hopes, the heart would break.”

-Thomas Fuller

Connect

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“We cannot hold a torch to light another person's path without brightening our

own.”

Ben Sweetland

Appreciate

“We tend to forget that happiness doesn’t come as a result of getting

something we don’t have, but rather of recognizing and appreciating what

we do have.”

-Frederick Koenig

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Forgive

“The more anger towards the past you carry in your heart, the less capable you

are of loving in the present.”

-Barbara DeAngelis

Be Compassionate

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“When we are being compassionate, we consider another’s circumstance with love

rather than judgment.”

-Jill Bolte Taylor, PhD

Speak from—and Listen With--Your Heart

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Believe

"Do not spoil what you have by desiring what you have not; but remember

that what you now have was once among the

things you only hoped for."- Epicurus

Choose your Attitude

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"We are people who need to love, because love is the soul's life,

love is simply creation’s greatest joy.”

- Hafiz

Love

"The individual is

capable of both

great compassion

and great

indifference. He

has it within his

means to nourish

the former

and outgrow the

latter."

Norman Cousins

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Start Now!

“Nobody can go back and start a new beginning, but anyone

can start today and make a new ending.”

-Marla Robinson

The picture below has two identicaldolphins in it. It was used in a case study on stress levels.

Look at both dolphins jumping out of the water. A closely monitored, scientific study revealed that, in spite of the fact that the dolphins are identical, a person under stress would find differences in the two dolphins. The more differences a person finds between the dolphins, the more stress that person is experiencing.

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Look at the photograph and if

you find more than one or two

differences you may want to take

a vacation

Thank you!

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References

Boyatzis, R & McKee, A: Resonant Leadership. Boston, MA, Harvard Business School Press, 2005.

Caruso, E., Cisar, N, Pipe, T. (2008). Creating a Healing Environment: An Innovative Educational Approach for Adopting Jean Watson’s Theory of Human Caring, Nursing Administration Quarterly, 32:2, 126-132.

Foster, R & Hicks, G: How we choose to be happy. New York, NY ,Berkeley Publishing Group, 2004.

Fredrickson, B. Positivity: Groundbreaking research reveals how to embrace the hidden strength of positive emotions, overcome negativity, and thrive. New York: Crown, 2009.

Frost, M., Johnson, M., Atherton, P., Petersen, W., Dose, A., Kasner, M., Sloan, J & Pipe, T. (under review). Spiritual well-being and quality of life of women with ovarian cancer and their spouses.

Johnson, M., Frost, M., Dose AM, Petersen, W and Pipe, T. (2009). Centering Prayer for Women Receiving Chemotherapy for Ovarian Cancer. Oncology Nursing Forum, 36(4): 421-428.

Pipe, T., Bortz, J, Chen, J., Dueck, A., Zomok, M., Summers, J., Autry, L. (under review). Mindfulness-based stress reduction in spouse caregivers of patients with dementia: An exploration of caregiver burden and rate of telomere shortening.

Pipe, T. Bortz, J.J., Dueck, A., Summers, J., Pendergast, D. and Buchda, V. (2009). A randomized controlled trial: Evaluating an Intensive Mindfulness Meditation Program for stress management in nurse leaders. Journal of Nursing Administration, 39 (3) 130-137.

References

Pipe, T. & Bortz, J.J. (2009). Mindful leadership as Healing Practice: Nurturing Self to Better Serve Others. International Journal for Human Caring, 13(2): 34-38.

Pipe. T., Buchda, V., Launder, S., Hudak, B., Hulvey, L., Karns, K. and Pendergast, D. (in press). Building personal and professional resources of resilience and agility in the workplace

Pipe, T. (2008). Illuminating the Inner Leadership Journey by Engaging Intention and Mindfulness as Guided by Caring Theory. Nursing Administration Quarterly, 32:2, 117-125.

Watson, J. (2008). Nursing. The Philosophy and Science of Caring. Revised & Updated Edition. Boulder: University Press of Colorado

http://www.mayoclinic.com/health/stress/SR99999

http://www.mayoclinic.com/health/stress-management/SR00041