As a part of our Faces of Courage series, we are featuring a patient story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for June is Piga Fernández. Here is her story:
I received my first cancer diagnosis in 1995, when not much was known about GIST. My first diagnosis was a leiomyosarcoma (LMS), and for seven years I was treated with aggressive procedures: surgeries, several rounds of radiotherapy and brachytherapy, which meant living a poor quality of life.
In 2002, whilst looking for a second opinion after having a liver metastasis for a second time and when there were no more options for me, I finally had the correct diagnosis: GIST.
At this point I had a new challenge besides living: it was having access to Gleevec, the drug that could allow me to continue living. At that time in 2002, in Chile, GIST treatments were not covered by any health system, not private nor public. But life had a big surprise for me: my son, who a few months before I was correctly diagnosed, had started to work with Novartis in Guatemala, and as I lived part-time there, I could have access to the GIPAP program. Thus, 16 years ago, I started receiving the correct treatment, which allowed me to see my kids grow, be a part of their lives, see them get married, and allowed me to be able to be a grandmother of nine wonderful grandchildren; and as one of my sons said: “allowed us to look at the future with different eyes: eyes of hope”.
Once I started taking Gleevec, I just wanted to take my pill and live. I didn´t want to know anything about other patients, nor of cancer. But this was a short (and a necessary) period of time. I was soon looking on the internet for information about this rare type of cancer and I found the Life Raft Group. To make the story short, I started to work with LRG remotely as a volunteer, then taking care of Latin America and finally as a Global Relations Coordinator. The next step was to create Fundación GIST Chile, an organization where we work for GIST and other gastrointestinal cancer patients and caregivers, giving them support, education, information, collaborating with research and also advocating for their rights.
It has been a long journey living with GIST. It’s sometimes hard, sometimes frustrating, sometimes sad, and I am realistic: although having a cancer diagnosis is not fun, It has given me a great gift: the gift of being able to help others, making their journey with GIST a little easier, and not having to go through the same difficult times that I went through.
Coping with GIST
I feel GIST is a part of me and I am responsible for taking care of my treatments and regular checkups, but besides that, I try not to think much about it and live a normal life.
I enjoy being with my kids and grandchildren, family and friends. I enjoy cooking, painting, my work and being part of my Catholic community of a Monastery in Chile, where I have found the spiritual support during my journey living with GIST.
Advice to Fellow GISTers
Thank every day for the gift of life. Try to be aware of all the gifts you receive during the day, and also be aware of the gift of this second chance life has given you.
Criteria for Patient of the Month
- Patient must be a member of the LRG Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has a GIST/PRiME account
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Interested? Contact Denisse Montoya, LRG Patient Registry Director for more information: firstname.lastname@example.org