By Shelley Nally, LCSW, ACSW, OSW-C
Nine years ago, Shelley Nally discovered a new social work career opportunity at James Graham Brown Cancer Center (JGBCC). She initially worked with a breast cancer grant and then remained at JGBCC continuing to provide services to patients as an oncology social worker. Currently, her responsibilities include addressing the needs of patients in the specialty groups including bone marrow transplant, GYN cancers and genitourinary (GU) cancers. Prior to coming to JGBCC, Shelley worked in direct service for 25 years in the area of mental health, with a focus on children and families. Additionally, she was involved in supervisory roles in middle-management positions; served as a faculty field liaison with Kent School of Social Work at the University of Louisville and was also involved with LCSW training and supervision. A particular passion of Shelley’s is mentoring social work graduate students in the growing field of psychosocial oncology.
Oncology social workers focus on removing barriers to care and providing support and guidance with the patient’s cancer journey. Social workers are trained to screen for distress and emotional challenges related to a cancer diagnosis. Patients facing a transplant have particular needs to satisfy in order to become comfortable with their treatment plan and face time away from their loved ones and routine.
Support is critical to any cancer patient. It is important to delineate between the different types of support, which includes practical, social and emotional. Practical support by caregivers often includes offering assistance related to transportation, oversight and access to medication, and assistance with addressing any financial concerns of the patient. Being present for the patient is essential to ensure that comfort needs are addressed throughout the entire treatment process as survivors are discovering their “new normal”. Social support includes teaching patients to reach out to professionals for information regarding support groups, behavioral oncology (counseling/therapy options), complementary therapies, and other related assistance. Emotional support relates to the person(s) on whom we rely for comfort, caring, connection and communication. I frequently stress to patients and caregivers that it is important to ask for help if they need it, especially if the person is not someone who is used to accepting assistance.
One of the ways social workers are able to assist patients is by advocating for financial assistance through The Bone Marrow Foundation’s (The BMF) Lifeline Fund. Recently, I successfully obtained a grant for a patient who had some unique challenges. She needed a stem cell transplant; however, she postponed it due to missing so much work during the calendar year and not having any remaining FMLA time. The transplant was essential to her ability to achieve a cure. She is single, self-supporting and her savings had been depleted. The grant awarded by The BMF provided her with the funds to pay her household bills, which offered her the comfort she needed to move forward with her transplant. She was grateful for the assistance and had a positive health outcome. As a result of the transplant made possible through The BMF, she is now enjoying good health and an improved emotional state of mind.
It is common for social workers to develop a strong connection to their patients and caregivers. Our hope is that every situation will have a positive outcome. We strive to assist patients in having a positive treatment experience so they do not feel encumbered by practical and other concerns. We delight in knowing that something we said, facilitated, or recommended made a difference in the quality of someone’s treatment journey.
One of the most difficult aspects about oncology social work is learning to accept the line between something we can and cannot do to improve a stressful situation for someone. With each patient and family, we hope the stars align to yield an optimal treatment outcome. When that does not happen, it is very disappointing.
In spite of the challenges presented with oncology social work, I always consider it a privilege to be present for someone facing something as difficult as a cancer diagnosis. I feel honored each time I am able to help address a person’s fears by offering hope and encouragement, and I hope my presence promotes a sense of comfort and peace in his/her spirit. It is my goal that through our partnership, I am able to empower patients and their families to feel more in control during a time when so many feel powerless.
Taking an active role in your healthcare journey
By Stephen Bess
I am an acute lymphoblastic leukemia (ALL) survivor, matched unrelated donor bone marrow transplant survivor, and a volunteer with The Bone Marrow Foundation. I received my treatment at City of Hope in Los Angeles and will celebrate my two year re-birthday (two years post transplant) in April 2015.
I hope my experience can help you and your loved ones attack the challenges you face with confidence and, above all, a sense of optimism and hope. You are your #1 ally, and you can do this!
Self-Advocacy: What does this term really mean?
For patients undergoing medical treatment of any kind, not to mention the intense treatment protocols that bone marrow transplant patients endure, self-advocacy means — at its very core — taking an active role in your healthcare journey. In the short time between diagnosis and treatment, so many parts of life may feel out of your control. As a leukemia survivor, I remember having feelings of helplessness after diagnosis, as though the world was moving too quickly for me to process it all. Fortunately, these feelings may be replaced with knowledge and confidence as you begin to interact more closely with your healthcare team. Being your own strongest advocate will help reduce these stresses, by getting you and your caregivers more involved in your treatment plans.
Everyone’s diagnosis is different. Everyone’s healthcare team is different. And everyone’s overall journey is highly personal. Yet for us to make it through the tough times, I’ve learned that it helps to stand up for yourself, become your #1 advocate, and take part in educating yourself on your diagnosis and treatment process.
Here are some tips I learned during my leukemia and bone marrow transplant journey that may help you as well.
Ask questions and slow down the conversation. I cannot stress this enough — confidently ask your nurses and doctors lots of questions. Don’t allow them to speak too quickly or overload you with too much at once. Slow down the conversation when terms and words get confusing. Ask your doctor to explain him or herself in a different way if you don’t understand—that’s why they’re there. When it comes to your medical care, there is no wrong question. There are no “stupid” questions. It’s your life, your healthcare, and you have the right to ask all the questions in the world about your treatment.
Maintain an open dialogue with your caregivers. Get to know your nurses, and your primary care doctor/oncologist. During my treatment, my confidence grew as my relationship with my hematologist grew closer; I felt like the more she knew me, the more she advocated for my best care, and kept my well-being at the top of her priority list. Tell your doctor what scares you, or what part of your treatment plan you don’t fully understand. Talk with them regularly about how you feel, physically and mentally. The more information you share with your healthcare team, the better prepared they will be to react appropriately when you aren’t feeling well. Ask them to explain your medications, procedures and treatment to you and your caregiver on a regular basis.
Take plenty of notes. I know from experience that you will be overwhelmed with the amount of information dropped on you after diagnosis and during treatment. The overload of information can make your head spin, especially when you’re on powerful chemos. If you don’t feel well enough to take notes in a notebook, have a caregiver write notes for you. Ask them to write down the medications you’re on, the treatment protocol/plan, and what side effects to expect. You will find the notes extremely helpful down the line, when you’re not feeling well or second-guessing what your doctor may have said. When it’s in writing, you don’t have to remember it.
Set small, attainable daily goals. Tell your healthcare team that you want to set small, but significant, daily goals that are attainable and safe. During my induction chemo, which lasted 30 days inpatient, I was so exhausted I could hardly get out of bed. My daily goal was simply to stand up, walk to the bathroom to freshen up, and return to bed without requiring assistance. It may be the smallest of tasks but setting and attaining basic goals empowers you, it feels good, it encourages recovery, and it gives you something to look forward to. Take charge of your goals and allow your healthcare team to guide you regarding what goals are the safest and best options.
Be honest with yourself. I learned quickly during treatment that I needed to listen to my body, trust my instincts, and tell my nurses and doctor when I felt that something wasn’t right. Some patients may feel embarrassed or timid to mention what may seem like a small issue, but my suggestion is to always mention it to a nurse or doctor. They will know what’s significant and what isn’t. What you believe to be a life-threatening pain may be a simple gas pain, or vice versa. Don’t second-guess yourself — be honest with yourself. Tell your doctor how you feel and have no regrets at the end of the day.
Educate yourself but only to an extent. Ask your doctors and nurses for resources that will help educate you and your loved ones about your diagnosis and treatment plan. I highly urge you to avoid the internet, from personal experience. If you search long enough, you’ll eventually find data and information that will discourage you. Resist the temptation to “research” information that is upsetting. The internet is full of misinformation and data that rarely applies to your personal situation. Being your own advocate means rooting for yourself, standing up for yourself, and maintaining the healthiest mental attitude possible. Discuss the details of your diagnosis and treatment with your doctor, ask lots of questions, and leave it at that.
Stay in front of your pain management. You know your body but you may not know how quickly pain can creep into your system before it overwhelms you. Undergoing a bone marrow transplant is painful, and this is no time to be a hero or to be stubborn. When the nurses and doctors offer you pain medications, they will usually schedule them on a regular basis around the clock. Take your pain meds regularly to stay in front of the pain. If you wait until the pain intensifies, you’ve waited too long. Being an advocate for yourself also means making sure you are as comfortable as possible at all times. If your pain meds aren’t working, tell your doctor and nurse. They will find something else that will help.
For more resources, visit The Bone Marrow Foundation’s website at www.bonemarrow.org. To speak with a social worker at The Bone Marrow Foundation, please call 1-800-365-1336.
Meet Mathew, Jennifer, and Shaunta. They are the latest Lifeline Project participants to be profiled in our ongoing series highlighting the needs of transplant patients.
In 2009 at 28 years old, Mathew, a talented concrete finisher with a bright future, was diagnosed with acute myeloid leukemia (AML). He underwent an emergency bone marrow transplant to treat the disease. As a result of treatment he is unable to do many of the things he loves like being out in the sun and working in construction. He also was required to have all of his teeth removed, but his insurance only covered extractions and not the cost of dentures. Mathew would appreciate assistance with the cost of dentures.
Jennifer and her husband have been married for 18 years and have two daughters who are almost eight and ten years old. Jennifer is currently receiving a stem cell transplant to treat her diagnosis of multiple myeloma. Since Jennifer and her family live over 600 miles from a transplant center, they have all needed to move while she undergoes treatment. Jennifer used to work as a teacher’s aid, but when she was diagnosed she had to stop working because of her compromised immune system. Her husband has also needed to stop working in order to be with their daughters and stay with Jennifer as she undergoes treatment.
Shaunta was diagnosed with acute myelogenous leukemia (AML) and must undergo blood and platelet transfusions twice a week as well as routine chemotherapy treatments. She spends a lot of time in the hospital as a result of the treatments and the multiple side-effects they cause. A bone marrow transplant is her best chance for a cure and Shaunta sees it as an opportunity to get back to “fulfilling the ministries that God has called me to do such as preaching, teaching, singing, web designing, and media planning.” She is challenged by the many medical bills not covered by insurance and would be appreciative of any support.
To help these or any of the Lifeline Project participants, click here.