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

Life with Cancer Video

To see the full video’s click the link “In Their Own Words”

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

Allogeneic Transplant: The Right Match Can Spark a Cure

“You need a bone marrow transplant but there is no match.” are among the most frightening words a person may hear. 

For certain types of cancer (multiple myeloma, lymphoma, or leukemia, myelodysplastic syndrome, amyloidosis) and non-malignant diseases (myelofibrosis and aplasic anemia) a blood stem cell transplant (BMT) may be the best chance for a cure.  Although there are two types of transplant; autologous where the patient receives their own stem cells and allogeneic where the patient needs stem cells from a donor, this article is focused only on the challenges that are unique to the allogeneic transplant.

In order for the patient who has one of the diseases listed above, to be able to undergo an allogeneic stem cell transplant, he/she must have a donor who is a genetic match. The best chance for a match is a full sibling, since ½ of our genes are inherited from each of our parents. When the patient either has no siblings or none of the siblings are a match, an unrelated donor must be found. The National Marrow Donor Program (NMDP) is an organization that has facilitated over 25,000 unrelated stem cell transplants since 1987. The NMDP maintains a registry of over 6 million potential unrelated donors world wide.

In spite of this huge number of potential unrelated donors, there are still many patients who do not have a suitable “match” in order to proceed to transplant. Since genes are inherited, the most likely source of a match who is not a sibling is from someone of the same racial and ethnic group. Unfortunately, many minority populations are sorely under-represented in the donor registry, limiting the opportunity for some patients to receive their best chance at a cure. There is a great need to recruit additional donors but in particular, those who identify themselves as American Indian, Alaska Native, Asian, Black or African American, Hispanic or Latino, native Hawaiian, Other Pacific Islander and multiple race are in most need.

Becoming a possible stem cell donor is easy – a few swabs of the inside of your mouth is all it takes to get a sample that will include you in the NMDP registry, and you can do it in the comfort of your own home. The next time someone asks you or a family member what they can do to help you through your cancer journey, ask them to join the NMDP stem cell donor registry. Contact the NMDP registry by going to www.marrow.org  and clicking on the link to Donor Resources/How to Join or call 703-970-3180 for more information about becoming a stem cell donor.

Becoming a donor can be very rewarding. After a certain period of time, donors and recipients have an opportunity to meet, if both agree. Such meetings are always an emotional experience for all involved.  Recently, one patient who received a transplant from an unrelated donor said in an anonymous note to her donor “My husband and I want to thank you for your generous gift…a new chance at life!”- a simple, but powerful, message. You too can give the gift of life.  I invite you to consider being part of the National Marrow Donor Program registry.

 

By Donna Eichna, MSN, AP-RN, OCN

In-Patient Stem Cell Transplant Coordinator

Inova Fairfax Hospital Stem Cell Transplant Program

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

 

 

 

 

 

Complementary and Alternative Modalities Offer Benefits to People with Cancer

Most nurses start off in the hard sciences and might then gravitate towards complementary and alternative modalities (CAM) such as therapeutic touch and massage, but my experience was quite the opposite. I was a trained Reiki master; practiced meditation and breathing; studied herbs and aromatherapy; and never thought of entering into the realm of conventional medicine. I inched closer by earning a master’s in public health, but my plan was to focus on refugee children. However, when my mother, Nora, became diagnosed with inflammatory breast cancer stage IIIc, that focus was spun on its head. I realized how CAM could improve the quality of life for women with breast cancer.

CAM is becoming more commonplace in Americans’ lives. According to the 2002 National Health Interview Survey, 36% of U.S. adults are using some form of CAM. When megavitamin therapy and prayer for health reasons are included in the definition of CAM, that percentage rises to 62% (NCCAM, 2007). The survey found that rates of CAM use are especially high among patients with serious illnesses such as cancer. Reiki is one CAM that is becoming more accepted in the medical setting. Researchers at the University of Saskatchewan, under a grant from the National Cancer Institute of Canada, are exploring the use of Reiki to combat the side effects of chemotherapy and anxiety in patients with breast cancer (Jackson, 2004). As part of a pilot program, Washington Hospital Center evaluated the effects of Reiki on patients with cancer to see if it could reduce tension,  stress, fatigue, pain, and anxiety (NBC-4, 2006). Reiki and other alternative modalities are now accepted as being within the scope of nursing practice and were accepted by 47% of U.S. state nursing boards in 2001 (Sparber, 2001).

Several smaller studies of CAM use by patients with cancer have been conducted. A study of CAM use in patients with cancer in the July 2000 issue of the Journal of Clinical Oncology found that 69% of 453 patients with cancer had used at least one CAM therapy as part of their cancer treatment. A study published in the December 2004 issue of the Journal of Clinical Oncology reported that 88% of 102 patients with cancer who were enrolled in phase I clinical trials at the Mayo Comprehensive Cancer Center had used at least one CAM therapy (NCCAM, 2007). The Office of Cancer Complementary and Alternative Medicine at the National Institutes of Health has broken down CAM into six major categories: alternative medical systems, energy therapies, mind and body interventions, manipulative, body-based methods, and nutritional therapies (NCCOM). Reiki falls under “energy therapies.” Although many of these modalities can spill over into several of the categories, dividing them up to better understand them is helpful.

The only way that I felt I was being proactive in my mother’s care was by using what I knew. She began coming to my home to receive Reiki on the days that she was to receive her chemotherapy treatments—adriamycin and cytoxan. Reiki, which means “universal energy,” helps reduce stress and promotes relaxation and healing; it is non-invasive, non-manipulative, and administered by placing the hands on and over several areas of the body.

Initially, my mother had a lot of trepidation regarding her treatment, so we scheduled her one-hour sessions right before the chemotherapy. The music that I played while giving her Reiki was taped so she could listen to it as she received the chemo; this helped place her in another frame of mind. Her white blood count was unaffected, much to the surprise of the physicians and nurses; she did not experience much nausea; and she had no vomiting and no infections. Although she was battling an aggressive cancer that required pre- and post-surgery chemotherapy and radiation, she remained positive and determined to fight. She is now eight years away from the diagnosis and dedicates herself as a caregiver to my father and enjoys painting and writing. The Reiki was not the only contributing factor to her well-being, but it certainly made a difference.

A year after Nora’s initial diagnosis I had a daughter, and four years after that I began feeling disconnected from the patients that I was serving as a public health professional. Thus, I decided to return to school once again to become an oncology nurse. Although it was a huge decision, I had come full circle after realizing how well CAM enriches the oncology field. When I worked as a floor nurse at the hospital, I often gave Reiki to patients who felt anxious, nauseated, or in pain. I also incorporated breathing and visualizations. Now as an oncology nurse educator, I am fortunate to work in an organization that supports my efforts in leading a mindfulness meditation group and presenting talks to groups, individuals, and families regarding what CAM is exactly and how it can be safely integrated into their treatment.

I see patients in and out of the hospital in our family center. With the patients in hospitals, I am often asked by physicians to do Reiki for pain or nausea. While receiving education on the illness, patients and their families may feel anxious or afraid so I have them do deep breathing. I have also done meditation with them. I do not go in with a set idea of what to offer; I just let it flow. I let the patients know about our CAM offerings in the family center. Many are already taking herbs or supplements and are highly educated about CAM. They usually want more information and research findings on the effectiveness of these herbs and supplements and their safety during treatment.

In our family center, I facilitate a mindfulness meditation group, gynecological cancer group, lung cancer group, and general education series. For the mindfulness meditation group, I give them a didactic on shamata meditation and a Tibetan mindfulness technique; other times, I have incorporated mandalas to color, etc. In the gynecological and lung cancer groups, my co-facilitators are oncology counselors, so we bring in speakers and talk about psychosocial issues; I talk about chakras, meditation, and Reiki. I even met with a prostate and breast group on two different occasions to give a CAM overview and explain how they relate to the specific illness. People love those, especially when it is more tailored and palpable. In the monthly educational series, I have given talks on yoga, Reiki, chakras, and polarity. Even when I am talking about chemo-brain, menopause, and side effects from chemo, I always incorporate a CAM. At work, I tend to send out tips to my colleagues about the benefits of deep breathing, healthy foods, meditation, smiling, and relaxation.

At Life with Cancer*, we work very well with our counselors. Two other counselors and I are developing a mind and body series for our outpatients, including an intro to mind and body therapies (i.e., guided imagery, breathing, meditation, sound therapy). Integrating CAM in this setting is well supported by a flexible organization with a goal of helping people face the challenges of cancer.

 

Geronima Cortese-Jimenez, RN, MPH, OCN
http://www.lifewithcancer.org

References

Jackson, K. (2004). Reiki: Rising star in complementary
cancer care. For the Record, 16(7), 32. Retrieved April 15, 2008 from http://www.fortherecordmag.com/archives/ftr_040504p32.shtml

National Center for Complementary and Alternative Medicine. (2007). Cancer and CAM. Retrieved April 15, 2008, from http://nccam.nih.gov/health/camcancer/#use

NBC-4. (2006). Cancer patients, survivors find relief through ancient practice. Retrieved April 15, 2008 from http://www.nbc4.com/health/8694928/detail.html

Sparber, A. (2001). State boards of nursing and scope of practice of registered nurses performing complementary therapies. Online Journal of Issues In Nursing, 6(3), 10.

Office of Cancer Complementary and Alternative Medicine. (2007). Understanding CAM. Retrieved April 15, 2008, from http://www.cancer.gov/cam/health_understanding.html