Practicing Self-Advocacy During My PTCL Journey

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The LLS Blog invites Aaron, who was diagnosed with peripheral T-cell lymphoma (PTCL), to share his reflections on becoming a self-advocate throughout his cancer experience. Read his powerful first-hand account below.

My exact cancer diagnosis was not immediately clear. In 2017, I began experiencing intestinal issues after Thanksgiving. I visited my doctor and was shocked to learn of a mass blocking my lower colon. My doctor believed it was colon cancer, as I had been largely asymptomatic up until that point. After a four-hour procedure, we still did not have an answer for what the diagnosis might be. Over the next two months, I continued to see specialists at many medical institutions. It was then that I learned I had a very rare, aggressive, and advanced-stage form of lymphoma known as peripheral T-cell lymphoma, or PTCL.

My doctors explained that PTCL is not a well-understood cancer. Since it is similar to other non-Hodgkin lymphomas, they recommended treating it as such, as there were very few treatment options available for PTCL at the time.

Coping After Diagnosis: Control What You Can

Considering how rare PTCL is and the poor prognosis for many patients, I was disheartened and scared by my diagnosis. My fear of uncertainty motivated me to attend a blood cancer conference hosted by The Leukemia & Lymphoma Society (LLS), where my hematologist was presenting. I was thankful for the opportunity to learn about the latest advances in PTCL treatment and what was coming down the pipeline. Having an open dialogue with my doctors was also key to educating myself about PTCL and knowing what options may be available for me.

To help keep me centered, I chose to focus on four aspects of my life that I could immediately control: nutrition, sleep, exercise, and managing stress. I paid more attention to what I was eating, committed myself to regular exercise, and realized the importance of my spirituality and mindfulness.

Being diagnosed with PTCL can be overwhelming and confusing for patients and caregivers. By focusing on these specific areas, I learned that while PTCL may be complicated to treat, I could control my emotional response to my diagnosis. I told myself that being grumpy is a choice, and I committed myself to staying as positive as possible for my overall well-being.

Preparing for Treatment: Develop Guiding Principles

Through all the uncertainty of diagnosis and treatment, I looked to my Native American heritage for stories and teachings that would help me through this difficult time. I became a self-advocate for my health, which for me, relied on three guiding principles that motivated me to focus on only what mattered as I started treatment:

  • I reminded myself to imagine how much worse it could be rather than how much better it could be.
  • I told myself to change what you can and accept what you cannot.
  • I accepted that I cannot let fear rule my life.

These principles helped me build up my resilience and emotional strength. I ultimately came out of treatment feeling an abundance of gratitude toward my ancestors, family, friends and care team who supported and lifted me up from the start of my PTCL experience.

I also took the time to write down what I learned during each cycle of my treatment, with the hope that I could manage it better during the next round. I learned how certain foods made me feel, what I needed to take with me to my appointments to offer a distraction (like books or music) and what I could do afterward to help mitigate some of the side effects.

Managing PTCL: Lean on Your Support System

Asking for help may look different for everyone, but know that it’s okay to lean on others while facing PTCL. My wife was my backbone throughout my diagnosis and treatment, taking on the responsibility to educate herself about PTCL and my treatment options, even when I wasn’t willing or open to learning. She took copious notes during doctor visits, asked questions, and advocated for me when it came down to choosing my treatment. The role she played was essential, and it strengthened our relationship in the end.

Taking It Day by Day

No matter what, feelings of anxiety and fear are bound to creep up while living with PTCL, but it’s important not to get consumed by these emotions and remember to take it day by day. During treatment, I began experiencing memory loss and a lack of concentration. I decided to put my insecurities aside, and proactively requested accommodations at work and started seeing an occupational therapist to help me work on strategies to strengthen my cognitive abilities.

While you may not be able to understand all of the ins and outs of your PTCL diagnosis (or a loved one’s), finding resources that can inform and support you are very helpful. Whether that means downloading apps that allow you to track your sleep or treatment schedule, journaling, meditation or seeking mental health services, figure out what you need to make each day a bit easier to get through and manage your PTCL.

LLS offers a wide array of free education and support for blood cancer patients, survivors, caregivers, and loved ones. Contact LLS Information Specialists – highly trained oncology professionals – for one-on-one support today at 800-955-4572 or by email/chat here.

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