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 is on YouTube!

How Long has Radiation Been Used to Treat Cancer?  Much more to come in the near future!

Genetic Testing for Hereditary Melanoma

According to the American Cancer Society, skin cancer is the most common form of cancer. In fact, nearly half of all cancers are some form of skin cancer. The different forms of skin cancer are basal cell, squamous cell and melanoma.  Melanoma is considered the most serious form of skin cancer.

The majority of cancers occur with no specific explanation but may be due in part to environmental factors. However, about 5 to 10 percent of all cancers are hereditary and linked to genes that are passed from one generation to the next in a family. Genes have been discovered that are associated with the formation of melanomas. One of these genes is called p16. Mutations in the p16 gene cause about 20 to 40 percent of hereditary melanomas. Individuals who inherit a p16 mutation have an increased risk to develop melanoma. Researchers have found that the risk to develop pancreatic cancer is also increased in individuals who have a p16 mutation.

Families that have more than one relative with melanoma are considered “at-risk” to have a p16 mutation. Families are also considered “at-risk” to have a p16 mutation if there are relatives with melanoma and pancreatic cancer. Genetic testing to detect p16 mutations is available for “at-risk” families. Genetic testing involves isolating and analyzing the p16 gene from cells found in a blood sample. Someone who has a p16 mutation is more likely to get cancer than someone who does not have the mutation. However, having the mutation is not a 100% guarantee that cancer will occur. Recommendations for cancer screening and medical management can be based on genetic test results and family history.

Genetic testing for Hereditary Melanoma is not routinely ordered unless there is a family history that suggests the presence of a p16 mutation. Typically, the first person to undergo genetic testing in the family is a relative who has had cancer. Therefore, a family member with melanoma or pancreatic cancer should be tested before testing other family members who have not developed cancer.

Although genetic testing for cancer risk has implications for the entire family, the decision to test is personal and should be carefully considered. Genetic testing can be discussed with a specialist, such as a cancer genetic counselor, who is familiar with hereditary cancer syndromes. If you are concerned about your family history of melanoma or of any other cancers, call 703-776-8748 to speak with Grace-Ann Fasaye, Certified Genetic Counselor and Manager of Cancer Genetic Services at Inova Fairfax Hospital.

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