Today we are continuing with one of our features, personal interviews! You can read our past interviews here. Today Lacuna Loft talks with cancer survivor, Erinn. She is an adrenal cancer survivor who talks to us about her diagnosis, her support system, and so much more!
Lacuna Loft: When were you diagnosed and what is your diagnosis?
Erinn: It was September 8, 2014, after weeks of blood test, urine samples and CT Scans, I received a phone call while at work from my Endocrinologist. Prior to the full work up, I originally went to a Dermatologist because I was breaking out on my arms. While at that appointment, she referred me to an Endocrinologist who took a pint of blood from me to run tests. After I was told that my cortisol levels were through the roof, she scheduled me for a CT Scan. I was told at my scan that the results should be in within a few days. Maybe 3 hours after my CT Scan my doctor called me at work and told me she had scheduled an appointment with a Surgical Oncologist that week. Once I was at the appointment, my surgeon told me that I was diagnosed with Adrenal Cancer, and she had already scheduled my surgery for October 1, 2014. After removing a tumor the size of a grapefruit from my left adrenal gland, it was confirmed that I was diagnosed with Adrenocortical carcinoma.
Months later, after being in and out of the hospital for pain and weakness, I had a PET Scan done in May 2015. It was then that several masses were found on my pancreas. June 8, 2015, I had a endoscopy biopsy, in which they tested the masses on my pancreas. On June 10, my fathers birthday, I was diagnosed with Pancreatic Neuroendocrine Tumors, a rare type of Pancreatic Cancer.
LL: How did you feel when you were first diagnosed (physically, mentally, emotionally)?
E: When I was first diagnosed with Adrenal cancer I was in shock, disbelief, and numb all at the same time. Everything from that moment on moved extremely fast. I was unusually calm prior to my surgery, but the day of my surgery I was nervous. The second time around, I hit rock bottom. That was one of my lowest moments.
LL: How did you choose to share your diagnosis with your friends/co-workers?
E: I told my friends as soon as my surgery was scheduled. I am very active on my campus, so I couldn’t go missing for a month and not have people ask questions. I told those that were close to me, one on one. I wanted until my recovery to tell my coworkers what was going on, because life changes completely after surgery. The second go round, it worked the same way. My friends were a little more in tune with my health, so they were ready to support me. My co-workers didn’t know until my tentative surgery date.
LL: Who/what/where did you turn to?
E: I turned to my family and my friends the most. They are an amazing support system. They are the original eBelievers. EBelievers is a non profit that I founded and am currently in the process of getting off the ground. I had my bad days and I turned to music those days. I absolutely love music, from the instrumentation to the lyrics and over all production.
LL: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
E: My first go round with Adrenal Cancer, I didn’t get a second opinion. Hind sight is always 20-20. If I could go back and get a second opinion, I would.
LL: What kinds of things did you do to distract yourself when you were going through treatments (either at home or at the hospital… Or both)?
E: I always have my headphones with me. They are the perfect distraction. I also usually hace a journal or notebook that I take notes on, or just draw in. While in the Palliative Care Unit, they allow me to paint ceiling tiles, as well as music therapy, and pet therapy.
LL: Have you chosen to share your story through video, blog, or radio? And if so, could you describe how sharing your story has affected your journey with Cancer?
E: I have shared my story in almost every medium you mentioned. Sharing my story has become my way of helping others with family members have hope. I am big on family, and once you tell me someone you care about is sick, but my story inspired them, we become family at that point.
LL: Where are you now in your journey with Cancer?
E: Right now I am a one year Adrenal Cancer survivor and we a currently watching my Pancreatic Cancer for any new developments. Things could be better, but they have been worse so I count each new day as a blessing.
LL: What do you like to do in your spare time?
E: In my spare time, I love to go out with my friends, catch a movie, and do anything to enjoy every moment outside of the hospital.
LL: What “words of wisdom” and/or advice would you give any young adult facing Cancer or another life-threatening illness?
E: Always do your own personal research and don’t just listen to your doctors. Ask questions, it’s your life, take it by the horns. But most importantly, don’t lose your smile.
Thank you for sharing your story with us, Erinn!
Are you a young adult cancer survivor, caregiver, or do you have a long term illness? Interested in being interviewed by Lacuna Loft? Let us know! We’d love to hear from you!