The Importance of Self-Advocacy

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.

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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.

Child violin prodigy with sickle cell anemia

Caesar Sant

Caesar playing the National Anthem at a Greensboro Grasshoppers’ game.

Caesar is a 5-year-old violin prodigy with incredible skill and joy. Caesar was born with sickle cell anemia, has suffered two strokes and is in need of a stem cell transplant. His parents will do anything possible to help their son overcome this life-threatening disease. They have partnered with The Bone Marrow Foundation and set up a One-to-One Fund to help raise much needed funding for Caesar’s medical expenses.

Read about Caesar and his extraordinary talent in an article featured in Our State Magazine.

Bone marrow recipient meets life-saving donor

John Ciempa, a 66-year-old husband and father of two, and his bone marrow donor, New York City firefighter Christopher Howard, met for the first time this past January – nearly two years after John’s bone marrow transplant.

John Ciempa

John and Christopher sharing some New York slices after the ceremony.

John was diagnosed in 2010 with myelodysplastic syndrome(MDS) and underwent multiple rounds of chemotherapy and several blood transfusions. He was given only several months to live without a bone marrow transplant. In 2012, John received Christopher’s marrow and later opened a One-to-One Fund at The Bone Marrow Foundation to help pay for medical and living expenses, like insurance and rent.

During his lengthy course of treatment, John remained upbeat and positive – especially with the support of his family. He was finally able to go home after doctors gave him the great news that he was in remission. John wanted to thank the donor who saved his life, which he found out was the son of a police officer who died on 9/11 trying to save lives. It was a lifelong dream of Christopher’s to be able to help others and follow in his father’s footsteps.

“I just want to give him a big hug. I’ve been extremely grateful that someone gave me the gift of life back”, John said.

Read more about John meeting his donor:

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