The Joy List

My husband was dying of cancer and I had cancer again.  (There was more but this is a joy, not a sob story.) 

I was distraught, grieving, overwhelmed, and exhausted.  

I honed down my daily goals to: 

1. Spend time with my husband
2. Exercise (sometimes achieved by walking up hospital stairs)
3. Work on one job (always done—this goal became permission to do one job only instead of all of them on the “to do” list)
4. Connect with someone (could be a 30 second conversation in an elevator)
5. Write down three things/events/observations that brought joy

 I added number 5 because I noticed I was barging though life without experiencing joy.   I had read about and kept a “Gratitude List” years before, but there seemed to be a “should” with that practice.   I should be grateful that I had food and friends, wasn’t destitute, or maimed, etc.    I was, sometimes, but that list brought no peace. 

Looking for joy brought me the present.   Pausing to enjoy the sun’s warmth on my cheek, a scurrying chipmunk’s chattering, my husband’s relaxation when I arrived to his room, a stranger’s smile on an elevator, the delicious gooeyness of a Snicker’s bar…these all brought feelings which I came to call “joy.”    

I kept my list in my planner, which I have with me at all times.  At first, it was difficult to find three joyful moments every day.  I’d have to walk around looking for them.  But the habit took hold, and eventually there wasn’t enough room, even on a “bad” day, to write down all the joyful moments.   

I still cry during crisis or chaos, but this list leads me to happier days of living in the present. 

If you’d like, you could start your own joy list right here: 

1.

2.

3.

                                                                                                                                                                        – A Grateful Life with Cancer Client

My Year at Life with Cancer – Reflections and Thoughts

As I reflect on my year at Life with Cancer as a Counseling Intern, I am moved by the number of incredible individuals I met through interactions with patients, family members, and LWC staff.  I feel both honored and blessed to have been a support to patients, as well as having been part of the LWC “team”.  

I began the year filled with both excitement and anxiety…anticipating all the new experiences and challenges the year would bring.  My previous internship had been on an oncology unit of an urban hospital.  While I gained a tremendous amount of knowledge at this placement, I knew Life with Cancer’s mission of improving the quality of life of those affected by cancer through education and counseling support was unique. This important aspect of holistic care is lacking in so many healthcare settings due to the adopted case management model.  I felt privileged to have joined an organization that recognized those educational and emotional needs.  My role as a LWC Counseling Intern offered me the opportunity to provide continuity of care through an established emotional relationship with patients and family members.  

I initially “shadowed” oncology nurse educators and counselors in order to expand my knowledge base, but was also able to observe the empathy they each provided to patients.  This display of compassion alone often decreased anxiety and improved mood in patients.  As I began to independently work with individuals affected by cancer, I was in awe of the strength and fortitude with which so many faced the disease.  Many were not aware of the gifts they exhibited because their lives had become so clouded by the moment to moment challenges of the illness and treatment; I often found my role to encompass helping them become more aware of what they already had to offer themselves.  I aspired to show the same love and compassion I had witnessed in other LWC staff, and believe I was able to be truly “present” and supportive to patients and families this year in both the inpatient and outpatient setting.  

Now that my year is coming to a close, I realize I have gained much more from this experience than I have given.  I have learned many educational aspects with regards to cancer and treatment, I have become more therapeutically skilled, I have grown and evolved emotionally, but I have also become more confident in the gifts I have to offer others.  As my graduation nears, I certainly hope my life’s path allows me to continue to provide this care on a professional level. 

I want to end with a quote that sums up my personal perspective on my life, my work, and my time at Life with Cancer.  

“Do your little bit of good where you are; its those little bits of good put together that overwhelm the world”. ~Desmond Tutu

Darah Curran, MSW Candidate, Catholic University, School of Social Services

What Can An Oncology Nurse Educator, Do For You?

When I first went to nursing school, I thought I would specialize in something “manly” like trauma, ER, or critical care.  But that first week of school, our assignment was to read a book called Life Stories, by Suzanne Gordon.  She was an investigative journalist who followed four different nurses for a few years and wrote their stories.  Totally by chance, I picked the Oncology nurse.  I read how she followed one patient, a young woman with breast cancer, over a three-year period, from diagnosis to death.  That was when I knew, I was meant to be an Oncology Nurse, connecting with people at a time and place where very few people are willing or able too.  Teaching them, motivating them, laughing with them through their triumphs, crying at their defeats, and sometimes, comforting them through death.  It is truly a privilege for me, to know them this way.

 

The best part of what I did as a bedside nurse was the education and support.  I used to want to sit down in the room and talk to them about their disease, review with them the why’s and how’s and what’s…. talk about the treatment plan, normalize the obstacles that might come up, answer any questions.  But the sad truth is, I didn’t get to do that very often.  I was too busy.  I had four other patients to give medicines too or confirm physician test orders, to change dressings on or draw blood from.  There just weren’t enough minutes within the twelve hours, to get it all in.  And that is why my role as Oncology Patient Educator is so important.  Because it gives me the opportunity to sit with patients and families and answer all of there questions in a way that neither the physician nor the bedside nurse can fully do.

 

The first thing that I try to do as an educator is to meet the person and family and assess where they are and what needs they have.  In the hospital, I can and always do, review their chart so that I know exactly what’s going on.  Some people want to know everything, while others don’t want to know anything.  Sometimes all I am really doing is making other resources and myself available to them for future use.  Typically, we will talk about the process of the disease, their particular treatment plan, the specific chemotherapies they will be getting, the side effects of the treatment and how to manage those side effects.  If they ask about particular things they have seen or read about, then I will address those things.  It is not uncommon for people to come to the hospital completely confused about items they have seen on the internet or things that family has told them, clinical trials, herbal supplements, comprehensive cancer centers are all among the most frequently asked questions.

 

Another aspect of my role is referring people to appropriate resources, for instance to our Children’s programs, or our Oncology counselors for free short term individual counseling or group counseling.  I frequently will speak with their oncologist or other physicians to help keep everyone on the same page or to advocate for them.  I also lead an education support group for Lymphoma, do talks on cancer issues, like managing the side effects of chemotherapy, whenever the opportunity arises.  I am very happy and proud to be a patient educator, and an Oncology certified nurse.

Managing Cancer in the Workplace—Know Your Rights

True or False: When applying for a job, you’re obligated to tell a potential employer you’re being treated for cancer. The answer is false. “It’s none of their business,” says employment attorney Patricia Smith, who spoke at a Life with Cancer program called “Working it Out: Managing Cancer in the Workplace.”  Not only are you not obligated to tell prospective employers about your medical condition, she adds, but they have no legal right to ask about it.

 

Nor do you have to offer a detailed explanation of gaps in your job history caused by illness, says Kimberly Fischer, a human resources director who also spoke at the session. Ms. Fischer suggests you simply say you were not working because of medical or personal reasons. And she says employers are less likely to be concerned about such gaps these days, because so many people are taking time off between jobs to get additional training or education for a new career.

 

If you are already working when diagnosed with cancer, Patricia Smith says your condition becomes your employer’s business only if your illness leaves you disabled in ways that require special accommodation, if your absences are causing strained relations with co-workers that could put your job in jeopardy, or if you want to request an extended period of leave from work. Under the terms of the Family  and Medical Leave Act, companies with fifty employees or more are legally required to hold jobs open for up to twelve weeks within a twelve month period for workers who need time off for medical reasons.  The leave must be justified by a physician, and the worker must have been employed for at least twelve months.

 

While you have a right to confidentiality about your condition, Ms. Fischer says it is important to establish good communication with supervisors, so they have whatever information they need to keep the workplace running smoothly. Think about what you want to accomplish when you sit down to talk with your supervisor, she advises, and if you feel unable to perform your duties as you did in the past, come prepared to talk about options—part time work, for example, or job sharing. If you go on extended medical leave, be sure and provide updates on your plans, so your supervisor knows what to expect when the twelve week leave period is over.

 

Knowing your rights, and knowing where to find the resources to exercise those rights, can be critical to balancing a job and cancer treatment.

Heart, Mind, Spirit Influence the Course of Your Illness: Writing and Life with Cancer

How can you write a poem when you are fighting a diagnosis like cancer?  How can you write anything when you are in a battle for your life?  Dorothy Britt, a cancer survivor and regular group member at Life with Cancer events shows us it is possible.  During an August creativity workshop at Life with Cancer, she wrote the following poem:

 

Life Lines

 

I am alive.

 

I wake to the sunshine each morning,

Stretch my body,

Sit in the sun.

 

I walk in the park, along the stream,

Hear its babbling waters–

A song to accompany me on my journey.

 

I feel my muscles strengthen as I walk.

I move to the rhythms of life and the world of nature.

I feel the animal of my body.

 

My spirit fills under the trees and their healing greenness.

I too feel rooted in the earth

And stretch myself to the sky.

 

Birdsong is the music I dance to.

Deer and squirrels are my companions.

In this moment I am free.

 

I am alive.

 

Dorothy Britt 8/11/06

 

Dorothy was among ten other group members attending this writing workshop.  With the help of Georgia Robertson, oncology counselor and certified poetry therapist, each was able to quickly write equally wonderful material that captured their strength and passion for living deeply, despite their cancer diagnosis. 

 

Life with Cancer offers many opportunities for participants to use writing as another way of caring for yourself through the cancer journey.  Recent studies published in medical journals have shown that writing about events in your life, particularly traumatic ones such as a cancer diagnosis, can improve your immune function and enhance your overall wellbeing.  For example, women with breast cancer who wrote regularly experienced fewer physical symptoms than those who did not.  Even five or ten minutes a day has been shown to be helpful (Journal of Oncology, 2002). 

 

To learn more about using writing as another avenue of healing, contact Sabine at 703-698-2526.  She will let you know about the writing workshops being offered. That’s what Dorothy did! She went home and created http://joyjourney.livejournal.com which captures her daily life in beautiful detail.  It is the ongoing story of a survivor who is writing her way to inner wellness.

Challenges of Caregiving: Navigating Role Changes

When a loved one has cancer, healthy family members often take on the strenuous role of caregiver. As a result, roles that had previously defined your relationship to a family member who now has cancer may shift. This can be especially challenging in the context of a partner relationship, where equal partners suddenly find themselves in an unequal patient-caregiver relationship. Older children who become caregivers for their parents may experience an even greater shift or complete role reversal, where the parent upon whom they have relied for support their entire lives is suddenly no longer available to them and instead requires their support.

 By setting clear caregiver-patient boundaries and identifying ways in which each individual can fulfill some of his/her traditional relationship roles, even while undergoing cancer treatment, families can bolster healthy functioning. It may be helpful for caregivers and their loved ones to distinguish between tasks or responsibilities that the patient can continue to complete/maintain him or herself and those that genuinely require the caregiver. This will help facilitate healthy boundaries, where caregivers’ sympathies and good will do not breed over-dependence on the caregiver.

Questions that can help guide such decisions include: “Do I need to do this for my loved one or can she do this for herself? Is this a priority? How do I feel about doing this? Am I doing this out of guilt or necessity? Am I the only one capable of helping my loved one?”

Find ways to validate and empower the cancer patient’s role as spouse, parent, sibling, etc. This will allow for a renewed sense of partnership in what may feel like an unbalanced relationship, as well as for some of the caregivers’ needs to be met. For example, if your spouse typically took care of the bills, and still has the capacity and energy to write the checks, ask him/her to do so. If your spouse was the one who did the grocery shopping, ask him/her to do the coupon cutting. If your parent was the one you turned to for advice regarding a challenging professional or relationship situation, continue to ask for their advice.

Taking on the role of caregiver does not automatically transform one into a superhuman. As evidenced by the team of professionals that treat cancer patients, (oncologists, radiologists, nurses, social workers, dieticians, etc.), caregiving is not a one-person job. Caregivers do not need to and cannot do it all themselves. Identifying tasks that others (friends, extended family members, colleagues, neighbors, volunteers) can take on to relieve the caregiver is also important.

Several resources exist to help facilitate delegation of such tasks. Two examples include www.lotsahelpinghands.com and www.carepages/inova.org. These web-based resources allow you to create a group calendar that is designed to help organize helpers engaged in an array of tasks (meals, yard work, errands, transportation, etc) and offer caregivers an easy way to provide updates on the family member’s health status, their availability and energy level for visitors, and more.

 Caregiver role strain can result in resentment, anger, or depression. It can also lead an individual with cancer to feel guilty, a burden, or as if they are preventing their caregiver from living a full life and enjoying the things they love to do. Life with Cancer offers a Caregivers Support Group, and individual counseling to help caregivers navigate role changes.

By Molly McKenna, Graduate Counseling Intern

Cancer Care for the Whole Person

Along with many other national professional organizations involved in cancer care, Life with Cancer was invited by the American Psychosocial Oncology Society to participate in a Roundtable discussion on the implementation of the recommendations for psychosocial oncology care by the Institute of Medicine’s report issued last fall, entitled Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs.

 

The report was compiled by a large panel of experts and emphasized the national need for effective delivery of psychosocial health services, based on a “growing body of scientific evidence demonstrating that the psychological and social (psychosocial) problems created or exacerbated by cancer (e.g. depression, other emotional problems, or a lack of information or skills needed to manage illness) can be effectively addressed by a number of services and interventions”, many of which Life with Cancer has already been offering.  These psychosocial services are designed to optimize the biomedical healthcare, helping patients to better collaborate with their medical team, and to manage psychological/behavioral and social aspects of illness and its consequences.

 

Main psychosocial needs of cancer patients as identified by the panel are:

1. Understanding of illness, treatments, and services
2. Coping with emotions surrounding illness and treatment
3. Managing illness and health
4. Behavioral change to minimize disease impact
5. managing disruptions in work, school, and family life
6. Financial assistance 

The report recommends that identifying these needs in a very consistent and systematic way, such as initial “assessment” of every patient along with provision of information on available services, should become routine practice in cancer care.  Psychosocial care should (come to) be an expectation, not a choice.

 

Along with facilitating effective communication between patients and care providers, the new recommended standard of care for effective delivery of psychosocial services includes:

1. Identifying the individual’s  psychosocial needs (such as through screening)
2. Linking patient and families to needed psychosocial services
3. Engaging and supporting patients and families in managing illness experiences
4. Coordinating psychosocial and biomedical health care
5. Following up on care delivery to monitor and adjust effectiveness of services 

The above has indeed been the mission of LWC, collaborating with and supporting the physicians and allied health care professionals treating men and women with cancer. Attending to psychosocial needs of patients is seen as an integral part of quality cancer care, which all involved in cancer care should explicitly incorporate into their policies, practices, and standards. i.e. making it “a right, not a choice”. LWC nurses and oncology counselors have long been providing psychosocial and educational support services, with our patients and families as our main teachers for the needs they face and the ways of meeting them.   We plan to be part of this nationwide effort to continue to deliver and improve care to cancer patients, providing “cancer care for the whole patient”.

 

By Sabine Gnesdiloff, MSW, LCSW, OSW-C

Life with Cancer Program Manager

 

 

 

 

 

Spirituality and Cancer

“Who am I?”  “Why am I here?”  “Where am I going?” “What really matters in life?”  These are all questions that each and every one of us asks ourselves from time to time, but particularly when a person has been diagnosed with an illness such as cancer, these questions become paramount .  We have a tendency to go through life shielding ourselves from certain realities such as our mortality, but cancer brings us to that door where we can either open it or close it, open it to be in touch with our vulnerability or close it to all the possibilities that our present life has to offer in our relationships with each other and to a higher authority, the horizontal and vertical so to speak.

 

A diagnosis of cancer leads people on a search for meaning which has more to do with a growing need for spirituality rather than religion.  Some people use the words spirituality and religion synonymously, but really they are different.  Religion may be defined as a specific set of beliefs and practices, usually associated with an organized group, in other words, grounded in specific rules.  Spirituality on the other hand has no ground rules, no formal belief system or doctrine; it is a connection to all that is universal. Spirituality may be defined as an individual’s sense of peace, purpose, connection to others, and beliefs about the meaning of life.  While many find solace, comfort and support in their particular religion, there tends to be a greater opportunity to find meaning in one’s personal spirituality, and it indeed is personal.

 

A wonderful analogy I discovered for one’s spirituality was from nurse and author of Mind, Body, and Soul:  A Guide to Living with Cancer, Nancy Hassett Dahm.  She likened the depth of one’s spiritual connection to being in the shallow end of a pool. “You may explore various depths, and often marvel at seemingly limitless unanswered questions and mysteries, until you accept that the far end of the pool is really the boundless, deep end of a magnificent ocean.”   Ms. Dahm asks the question “Why is it important to have a sense of spirituality?” Personally, and in my years of being an oncology nurse, I agree with her that it definitely is important, because it will help you live better and to live with a heightened sense of hope and meaning. There is a beauty to spirituality as it “enables you to create your own private place of being”.  It is “contemplating anything and everything in relation to your sense of being; finding personal significance in the seemingly insignificant, to that which holds the greatest significance” however that is defined by you. 

 

Author Dahm has used philosophy to give her a greater sense of spirituality, such as the works of Socrates, Plato and Marcus Aurelius.  Because philosophy is “grounded in logic” and is “universal, non-sectarian and speaks to the soul of most of us who are uncertain or fearful of the mysteries of life and death”, the ideas of these philosophers are what folks may need to find connection to each other and to the universe.  “Philosophy serves as a moral compass, teaching us the many ideals of a meaningful and purposeful life and the permanence of the soul.” Ms. Dahm says that by reading these philosophers, you may be taken “from the shallow end of the pool to the deep end of spiritual comfort”.

  

As you may have guessed by now, I was so moved and touched by this author.  I so identified with Ms. Dahm as she verbalized, as a noted author could, that which I could not in all my own years as an oncology nurse.  Rather than paraphrase, I will quote her directly:  “I realized long ago (in our caring for those with cancer) that people need to feel their life mattered in a significant way.  I felt a responsibility to show them that indeed, they are loved and part of us all.  Finding a way to bring them the peace of mind they could not give themselves took me on a search for greater spirituality.  It was for myself as much as for them.  In helping others I was finding my own way, my own road to understanding.”

 

Herein lies my involvement with Life with Cancer’s Spirituality Quest Group that meets monthly at our Life with Cancer® Family Center.  Fifteen years ago when the group originated, we started appropriately with discussion of the book Man’s Search for Meaning by psychiatrist and Holocaust survivor Viktor Frankl.  He firmly believed that every human person is a being who is transcendent and that the basic drive for a person is not pleasure or power but meaning. That is the essence of the Spirituality Quest Group.  We are on a quest for the meaning in our lives, both personally and collectively; we look at how a cancer diagnosis impacts that meaning and how we can find peace in the midst of chaos and crisis.  We have many storms of life that darken our skies and have to be buffeted:  physical, mental, financial, the list goes on, but when we can find a place to feel grounded, supported and safe, wherever that place may be, maybe at our group, you will find a sense of peace and comfort and feel transcended! 

 

Respectfully and lovingly,

Marsha Komandt, RN, BSN, OCN^®

Oncology Education Coordinator

One Women’s Remarkable Journey

Her passions were soccer and dance.  At 22, with a crisp new degree in child psychology in hand, Shara Gaites set off to make her mark on the world.  Life was great, except for that nagging knee injury, and as insurance coverage under her parent’s policy was about to end, Shara gave in to her mother’s pestering to “get that knee looked at.

She healed quickly from the surgery to remove the “cyst” and simply anticipating a quick post op visit, Shara ambled on crutches into the orthopedics’s office, greeting the staff, her smile lighting up the room.  The doctor entered, gently touched her legs, then delivered the devastating news.  “You have cancer.  A synovial sarcoma in your knee.  This is a grade IV aggressive tumor that can spread to the lungs and groin.  We may have to amputate your leg.  If this hadn’t been caught, you would have been dead within the year.”

“Die? Cut off my leg? I’m only 22!”Life rapidly became a bizarre vortex of consults and complicated treatments.  Unlike today, fifteen years ago radiation left severe burns on Shara’s leg, there were fewer medications to minimize the side effects of chemotherapy and she had to beg the surgeon, planning to biopsy the spots on her lung, not to cut her from neck to waist but rather do a smaller incision under her arm.  Shara protested, “I don’t want to look in the mirror every day and be reminded of this nightmare!”Shara’s mother quit her job and together with Shara’s father, brother, family and friends a team rallied, dedicated to the mission to help Shara fight for her life.And…along this journey Shara and her family met Sabine Gnesdiloff, then one of only two Life with Cancer staff, who provided support and education to help manage the challenges of this disease.  So affected by Sabine’s purpose, Shara volunteered to help start the Young Adult Group (the first in the area), spoke at fundraisers and presented on panels.Against the odds, she didn’t die or lose her leg but with Sabine’s mentoring, earned a graduate degree in social work, married and had babies of her own.  During the past eight years, Shara has been an integral part of Life with Cancer. She facilitates various support groups for adults, children and teens as well as provides individual counseling. 

Shara and Family Today

 

Sexuality, Intimacy and Cancer

Often in the healthcare setting, sexuality is overlooked as an important topic of discussion.  Sexuality does not just mean the act of sex; it refers to all the beautiful and wonderful traits that encompass and make up who you are– how one perceives him/her self as a man or woman, husband, wife, partner, lover, friend, employee, etc. Oftentimes, these areas are impacted when one receives a diagnosis of cancer. Many of the side effects of cancer treatment (such as pain, fatigue, nausea, skin irritation, headaches, and hormone changes) affect sexuality and intimacy.  Medications used to treat cancer related depression and anxiety can also have an impact on sexuality. The impact not only comes from the disease, treatments, and side effects but also from the emotional complexities that arise for the person living with cancer as well as their partners and families.  When an individual is not taking care of his/her physical, emotional and spiritual health, intimate and sexual relationships are often negatively impacted.

 

Maintaining intimate relationships, the connection between two people that involves trust, honesty and communication, is a critical part of our relatedness as humans. Intimate relationships are not necessarily sexual relationships; however, some might argue that a sexual relationship could not be a fully satisfying relationship without an intimate connection. Sensuality and sexuality are quality of life issues.

 

For the Couple:

• It is important to talk about your sexual expectations. Disagreements can occur simply as the result of misunderstandings or lack of communication leading to one or both partners feeling rejected or misunderstood.
• Take turns individually to discuss your sexual expectations – how often, time of day that you feel at your best, etc.
• Remember to maintain intimacy and recall the thoughts and feelings when you first fell in love:
  • Write love notes to remind your partner how much you love and appreciate him/her
  • Set the mood: light candles, play music, take turns offering each other a massage
  • Take your time: appreciate and enjoy each other and the gift of being able to be fully open and intimate with one another
  • Talk about your “love language” or what speaks/shows love to you so that your partner is clearly able to respond to your needs
• Sometimes, sex becomes difficult or is no longer an important part of a relationship. If sex is not an option, find other ways to be intimate – cuddle, kiss, touch, hold hands, massage, talk, play a game, watch a movie or go dancing.  Sometimes just being naked is the most intimate act we share with our partners.
• If one or both partners is experiencing sexual dysfunction or having difficulties with sexual desire or performance; consult your physician to rule out physiological problems and a sex therapist. The American Association for Sex Educators, Counselors and Therapists is a wonderful resource and you can locate a therapist by going to www. AASECT.org.

 

For the Adult Single Person:

 Maintaining intimate relationships is an important part of your overall well-being. That does not mean having a lot of friends, but rather having a few relationships that you can be open and honest with. 

• Remember sexuality and intimacy is not just about sex.  Think of the ways in which you could connect with your friends and family in a meaningful way.
• Take time to reconnect with yourself and find enjoyment in activities or interactions with loved ones
• Find a support group where you can talk with people who are struggling with some of the same ups and downs that you are
• Choose one friend who you will meet with once a week

 

Final Thoughts

We, as human beings, crave interaction. We have the natural desire to be touched, hugged, caressed and loved. Sexuality and intimacy are not life or death issues but are essential to quality of life.

 

Sage Bolte, ABD, MSW, LCSW, OSW-C
Life with Cancer Oncology Counselor