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.
Nile Price fought a difficult battle with sickle cell disease, but he has come through it victorious.
While he suffered the pains and multiple hospitalizations caused by the disease, Nile’s family reached out to the community for assistance. They encouraged potential bone marrow donors to be tested. They held local fundraisers and opened a One-to-One Fund at The Bone Marrow Foundation to help pay for medical expenses, like doctors visits and medications.
Their efforts were successful. Two donors were found, and at the age of 13, Nile underwent an allogeneic bone marrow transplant. Two years later, Nile and his family met the woman whose donation cured his sickle cell disease.
In the years following his transplant, Nile suffered graft versus host disease (GVHD) which has affected his skin and muscles. Fortunately, with the support of his family, Nile is growing stronger. His doctors are reducing his medications and have released him from physical therapy.
Nile is proud of the progress he has made, saying, “I knew I was going to get back to where I was. I just didn’t know how long it would take.”
Read more about Nile and his transplant journey:
Katie has significant expenses, as she will need to re-locate near the transplant center for 3 months. Her rent at home is $800/month. Though she can be reimbursed $1,500/month for lodging at the transplant center from insurance, she needs to come up with the money up front and does not have it….The patient is in desperate need of funding to help pay for her portion of lodging ($1,500 for 3 months = $4,500)
Katie’s doctors decided that an allogeneic transplant was the best course of treatment for her aplastic anemia. In addition to housing, she also listed transportation and co-pays/insurance premiums as her areas of greatest need.
In order to give a more clear idea of the depth of need faced by bone marrow, stem cell, and cord blood transplant patients and their families, we are sharing excerpts from actual applications to The Bone Marrow Foundation’s Patient Aid Program. The names have been changed to maintain confidentially, but the stories are straight from the applications.
To learn how you can make a gift to support the Foundation’s efforts to help transplant patients and their families, click here.