AML Survivor Lela Prewitt Talks GVHD Tips

Lela Prewitt was diagnosed with Acute Myeloid Leukemia (AML) n February of 2021.  She walks us through her diagnosis and transplant process.  This includes having to move with her wife from their small community to Seattle, so they could have access to the Fred Hutchinson Cancer Center, also known as "The Hutch."

Lela's transplant in June 2021 went well, but she developed Graft Versus Host Disease, and with it came many complications. She talks about the need for education about survivorship post-transplant.  Often, patients are so focused on the procedure itself, the time following isn't given as much consideration.  But this period is crucial.   It can involve balancing medication and GVHD symptoms.

We cover the importance of building you own team. In Lela's case, that includes her team at The Hutch, but also her physicians back home in Port Angeles.  Communication between you and your team - and between the team itself - is key.  Also, medication cost can be a factor.  Lela talks about advocating for yourself with different drug companies.

While you may be facing a "new normal," perspective is key.  Lela says there are days where "doing" is less important than being alive.  You may only have a finite amount of energy, and you need to prioritize.  She cites the "spoon theory" from Christine Miserandino, that we referenced in a previous episode with Meredith Cowden - that you can listen to here: https://marrowmasters.simplecast.com/episodes/meredithcowden2

There will be changes and adjustments in your day-to-day life.  For example, the long walks Lela enjoyed with her wife Carol are now aided by a wheelchair, depending on her energy level.  And now her wife makes her a warm mocha every morning to watch the sunrise.

Mental health is crucial - Lela talks about everything from positive self talk to meditation and yoga.  Also, know what you and your support system are comfortable talking about.   Lela finds comfort in books written by cancer patients who have since passed, but her spouse isn't comfortable thinking about Lela's mortality. It's important to understand these dynamics.

We close with Lela's positive attitude and her hope to recover her strength, fight through her GVHD, and resume those long walks.

Resources

National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.

nbmtLINK Website: https://www.nbmtlink.org/

nbmtLINK Facebook Page:  https://www.facebook.com/nbmtLINK

nbmtLINK YouTube Page can be found by clicking here.

Thank you to this season's sponsors:

The Leukemia & Lymphoma Society, www.lls.org

Sanofi: https://www.sanofi.com/