Living La Vida Lymphoma: Jodi's Story

This two-part article was written exclusively for LymphomaInfo.net by Jodi Sykes, a writer and blogger. She is the author of "Living La Vida (Lymphoma)" and other books. She shares her experience with lymphoma and how it inspired her to write.

In March of 2009, I woke up one morning to find a red lump on my right shoulder. That was the start of my “Medical Mystery Tour.”

It wasn’t until October 26, 2009, that I received my diagnosis of Subcutaneous Paniculitis-like T-Cell Lymphoma, or SPTCL for short. I began blogging about my experiences, first, as a way to deal with what I was going through. Writing has always been therapeutic for me. My followers started to urge me to turn the blog into a book.

I took heed and the blog became my manuscript for "Living La Vida (Lymphoma)," which was published in February of 2013. I re-started the blog in August of last year while I was doing the final edits. Right from the start, I realized that I provided a few minutes each day to lift the spirits of those who read my blog, and I made that my mission – “to offer love, hope, support and empowerment to those who are living with lymphoma.”

L-Word Challenges

As soon as I received the news, my survivor instincts and will to live kicked in. Those first few months were a struggle. Not only was I at my lowest health-wise, but waiting for the diagnosis tested every last nerve I had left. Up until then, my doctors didn’t even know what they were dealing with.

With the first biopsy I had in August, the pathologist told me he didn’t think it was lymphoma. My slides were sent to two of the top pathologists in the U.S. and they were able to give ‘it’ a name, SPTCL, which is the rarest of the rare – it accounts for less than 1 percent of all lymphomas. My oncologist told me that I had a better chance of winning the lottery than of getting this disease. (I’m still trying to hit the big one!)

Not only did I have to deal with some personal problems at the same time, but I was put on high doses of Prednisone, which immediately changed everything about me – the steroids wreaked havoc on me and made my face and body unrecognizably bloated. I had chronic insomnia, developed neuropathy and was extremely fatigued.

All my life, I only took a Tylenol if I was in extreme pain. Now I was being forced to take these powerful meds. In January of 2010, a drug called Cyclosporine was added to the regimen of Prednisone. Cyclosporine is an anti-organ rejection drug that is given to transplant patients. It took months to learn the best dosage for me, which meant lots of lab work and close monitoring.

In Part II, Jodi shares how she learned to see her diagnosis as a gift.