Inspirational Stories

I first learned of the Leukemia & Lymphoma Society (LLS) when I participated in a Team in Training (TNT) event to walk a half marathon in San Francisco in October 2004. My friend in Michigan had lost her dad to lymphoma earlier that year, and she was training for the event from her home in Michigan. My training and participation were a way to support her during the loss of her dad. I never thought I could walk that far, and, through the support of the trainers and the motivation to support my friend, I had an awesome time completing that walk. My wonderful experience in participating in that event stayed with me over the years, and I had always planned to do another half marathon—or maybe even something more challenging!   

After my own diagnosis of chronic myeloid leukemia (CML) in 2022, I remembered my experience with LLS. I first reached out to LLS for some nutritional support and resources, seeking information on how to change my eating habits and lifestyle best to be the healthiest I could be during the initial stages of my treatment and beyond. I also reached out to the Patti Robinson Kaufmann First Connection® Program so that I could be in contact with someone else who had CML. The LLS went out of their way to connect me not only with someone with CML but also with someone who took the same medication I take. This was especially important to me because I had a lot of difficult side effects at the beginning, and it really helped me to talk to someone who shared my experience.

Her name was Deb, and she validated my experience and fears more than anyone else could. She has also been living with CML for over 15 years, and she gave me a sense of hope that I really could live a happy life with this scary diagnosis and chronic cancer that can be treated but never cured. Following that conversation, I attended an in-person LLS event in Santa Barbara in the Spring of 2023, where I learned more about nutrition and lifestyle management support for blood cancer patients. This was my first in-person meeting where I was fully identified as being a cancer survivor, and my attendance at that event was quite meaningful to me.   

I later found support on the LLS Community page. I joined the CML group and began to learn about my cancer from fellow survivors. I found that could ask questions and get immediate support that I could trust. Through LLS Community, I signed up for the Pen My Path group that was scheduled for the winter of 2024. When I received an email that the groups were full due to the many people interested in that program, I reached out to see if I could help. I have loved writing all my life and wanted to support other survivors who could use writing as a path to healing. I was welcomed to offer workshops for Pen My Path and facilitated two cohorts in 2024. It was an amazing part of my own healing journey to support others who shared a similar experience and had a willingness to open themselves to the emotions around living life with a cancer diagnosis (or being a caregiver of a blood cancer patient) through writing.  

I am excited to work with LLS Community to offer two new Pen My Path cohorts for 2025. I am still a user of the CML forum on the LLS Community page and have recently reached out to the advocacy arm of LLS for some support with medication co-pay assistance advocacy. I had utilized a co-pay card from Bristol Myers Squibb when my medication, Sprycel, was not available as a generic, as my co-pay was $250 per month. Sprycel is now available as a generic, but the drug manufacturer is not allowing co-pay cards to be used for residents of California, due to a law surrounding generic medications, I am now back to paying $250 per month for my medication. I hope LLS can help advocate for a review of the application of the law, as I do not believe it is being interpreted correctly by the manufacturer or the specialty pharmacy that distributes the medication.   

I am so grateful for all of the LLS services and supports that have supported me on my journey with CML. I recommend to anyone looking to support organizations financially or through volunteering to consider LLS, because LLS has such a wide scope of services and advocacy support for blood cancer survivors and their families. It is an incredible organization and I feel so blessed to be connected in so many ways.