MPN Caregiver Shares Strategies to Cope & Stay Organized
Photo by Peter Lam for Unsplash
I always make sure to ask questions and not worry about being pushy or annoying, whether they are questions for the care team, social workers, or insurance company.
Myeloproliferative neoplasms (MPNs) are a group of blood cancers that happen when the body makes too many white or red blood cells, or platelets. This overproduction of blood cells in the bone marrow can create problems with blood flow and lead to several complications. The diagnosis of MPNs includes many tests, and treatment can be a long process that requires support.
Having the support of a cancer caregiver is extremely important for people living with an MPN diagnosis. To learn more about what it means to be an MPN caregiver, we spoke with Kyle, a member of our MPN advisory board* and a caregiver to her mother who is navigating an unclassified MPN diagnosis.
As rare diseases, MPNs require specialized treatment, and specialists may recommend a variety of treatments for an individual patient. In what ways were you able to partner with your mom to gather information, learn about treatment options, and make treatment decisions?
Kyle: In the beginning, I went to every appointment with my mom and took notes. This was very helpful as it's sometimes difficult to process information in the moment. Especially if you are the patient. We were and still are committed to not being shy in asking questions from her medical team. If her disease (an unclassified MPN) is mysterious to experts in this field, it makes sense that it is confusing to us as non-medical professionals.
What strategies have you found helpful in maintaining your own well-being while being a caregiver?
Kyle: Trying to prioritize my own health is a constant struggle but something I strive to do. I am in therapy and try to exercise and meditate as much as I can. I also try to lean on my own support system as I need them.
What support systems or resources have you found most beneficial in your role as a caregiver for someone with MPNs?
Kyle: When [my mom] left the hospital, she needed to take a lot of medication (almost 40 pills per day), so we created a color-coded calendar to help us stay on track.
I also found a support group for young adult caregivers, which helped me feel less alone in the journey of caregiving. The support group was very helpful to me. Talking to other people who are going through something similar helped me find ways to cope with what was in front of me.
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How do you maintain open communication with your loved one about their MPNs diagnosis and treatment plan?
Kyle: It is tough since I am caring for my mom and she wants to protect my sister and me, and vice versa, but we try to maintain an open dialogue, and I continue to attend appointments when things seem to be shifting so I can ask my own questions of the care team.
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What advice would you give to other caregivers who are new to caring for someone with MPNs?
Kyle: Make sure to lean on your support system since you can only care for someone else if you are caring for yourself — as cliche as it sounds, and as hard as that is for me to personally embrace. Try to stay organized and do one thing at a time.
Have you encountered any unexpected challenges as a caregiver for someone with MPNs, and how did you overcome them?
Kyle: Always! There is always something new and when I think I understand something there is a curveball that makes me question my understanding. There have been challenges with grants for medications and insurance as well. I always make sure to ask questions and not worry about being pushy or annoying, whether they are questions for the care team, social workers, or insurance company.
How do you advocate for both your loved one's needs and your own needs within the healthcare system?
Kyle: This is a tough one no matter which hospital you are at, since the healthcare system is very bureaucratic, and you need to be strong in advocating your needs.
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About Kyle
Kyle is based in NYC and works as a General Manager for Broadway and touring productions. Along with her sister Danielle, she is a caregiver for her mother, who has an unclassified MPN.
*Editor's Note
CSC utilizes advisory boards for the development of each of our Frankly Speaking About Cancer resources. By sourcing medical professionals, people navigating their own cancer diagnoses, and caregivers, we are able to inform and elevate our resources. We are grateful for these connections and the privilege of gaining new knowledge, insights, and, in some cases, lived experiences from each advisory board member. If you or someone you know has been impacted by cancer and is interested in serving on an advisory board, please contact our toll-free Cancer Support Helpline at 888-793-9355.