One-In-A-Million and No Cure?

Eight years ago, I was relaxing at a resort and noticed a few odd spots on my arms and legs. At first, I didn’t think much of it. The next day, there were more spots, and my face winced at the thought that it could be bed bug bites from an unsavory traveler who may have checked out of the hotel room just before me.

As the week progressed, so did the spots. These spots were also quite painful and would start off looking like a simple mosquito bite, then within hours build pressure under them until they finally erupted and scabbed over. By the end of the week, these little spots covered thirty percent of my body and looked a lot like chicken pox.

A Trip to the Dermatologist

When I got to the dermatologist, she assured me that it was probably something benign, took a punch biopsy, and sent me home with hydrocortisone cream.

Fast forward three weeks later, I’m sitting in my doctor’s office with my husband at my follow-up appointment. The look on my doctor’s face said it all and I heard her words in slow motion.

“You have cancer. It’s a one-in-a-million form of Lymphoma,” followed by “, and there is no known cure.”

When you the hear words "YOU HAVE CANCER", life seemingly flashes before your eyes. I know it did for me. Those three words sounded surreal and certainly not anything I imagined hearing next to my name. "NO KNOWN CURE" felt like a kick when I was already down.

Diagnosed with Lymphomatoid Papulosis

As I learned more about this one-in-a-million form of Lymphoma, my fears calmed. The medical term for my skin cancer is Lymphomatoid Papulosis (LyP). It’s known as Cutaneous T-Cell Lymphoma. It’s not a blood-based cancer, but in some versions of LyP, it can progress into other forms of Lymphoma that do involve blood cells.

Treatment can include various techniques to bring relief from an outbreak of lesions including low-dose methotrexate and UV light therapy, but there is no known cure.

My Self-Care Journey

With no known cure for lymphomatoid papulosis, I started to research anything that was linked to cancer and lifestyle. Healthy nutrition was my starting point. I gradually added in nutrient-rich foods and the more I added, I naturally had less room for junk foods. I’m not a medical professional by any means. I simply let my lesions be my guide. In my case, less junk meant fewer lesions.

I continued seeking other ways to "nourish myself." I learned that health issues sometimes run deeper than simple diet and exercise changes. Typically, what shows up on our plate reflects what is going on in our lives. In my case, I was trying to be super-mom, super-wife, super-homemaker, super-chef, super-chauffeur, and working insane hours in a highly stressful job. From the outside, it looked like I was crushing life but on the inside life was crushing me.

Once I was able to pause and focus on my own self-care, healing became a journey of self-discovery and personal breakthroughs. Seeing firsthand, the power these changes had on my journey led me to help others by sharing my story and talking openly about the positive impact cancer had on my life.

Life with Lymphomatoid Papulosis

At this point, I’m happy to say I’m living with my LyP and doing great! I do get some lesions from time to time when stress is high or some junk food creeps back into my diet, but it’s ok. I like to say I have a little built-in “health meter” that keeps me in check.

I hope my story helps others on their skin cancer journey, to see the silver lining in everything we face. If anyone has any questions about lymphomatoid papulosis or is dealing with something similar, please feel free to reach out!