Tell us a little bit about yourself.
My name is Sanan, and I am 27 years old. I am a daughter, sister, student, friend, mentee, mentor, and lover of life. I was raised in a tight-knit Lebanese-Armenian household. With that said, it doesn't come as a surprise that I attended an Armenian school up until college. Right after high school, I attended Loyola Marymount University, where I received my bachelor's degree in Sociology, with a focus on Medical Sociology. Upon graduation, I started working for Tower Cancer Research Foundation, where I was able to assist other cancer survivors with their survivorship journey. Being able to see the difference I made in people's lives motivated me to pursue a degree that can provide the skills and resources for me to be in a position where I can continue to impact lives on a grander scale. As such, I am currently finishing my Master's in Public Health from UCLA and will be extending my summer internship at CHLA into the year, working with their Strategic Services team.
What is sarcoma?
Sarcoma is a very rare cancer of the bones and connective tissue. I had not heard of a sarcoma until the day I got diagnosed.
How did you first become aware of your diagnosis?
Growing up, I had the opportunity to try out many extra-curricular activities – from dance, piano, gymnastics to basketball. Ultimately, as I got older and my time became scarce, the only sport I was able to commit to was basketball. You may ask yourself, "why is she talking about basketball?" Well, it played a significant role in my diagnosis. After playing four years in varsity basketball during high school, I continued to play for my intermural team. However, right after graduating high school, a pain in my hip started, and I was limping. I went to get it checked out – we did the blood tests, x-rays, etc. and every test came back negative. So, we didn't think to follow up. As the pain persisted, I tried to go to physical therapy, swimming sessions, chiropractors, and massages to alleviate the pain. However, nothing took it away. One day, during a game, I tried to go up for a lay-up and couldn't get my leg to move, and at that moment, we knew something was not right. Coincidentally, at the same time, a benign tumor had popped up on my right humerus, and I was sent to see an orthopedic oncologist at USC. Once he checked that out, I realized it would be a wise decision to ask him to check out my hip too. Expectedly, he asked for an MRI, and a gray shadow showed up sitting right on top of my right iliac bone. He was still unsure of what it could be at that moment and assured me that the entire orthopeic board was 99% sure the thing in my hip was benign, but he wanted to be 100% sure and asked to do a biopsy. So, you can imagine the shock we both experienced when I woke up from my procedure to be told that I had stage 4 Ewing's Sarcoma.
Did you experience any symptoms before you were diagnosed with sarcoma?
Looking back, my only significant symptom was consistently pain in my hip that got worse over time. However, as I read up on sarcomas, I saw that a fever might also be a symptom. There was an instance during the time I was limping that my entire body was in shock, and I could not stop shaking with the chills. I also had a 103-degree fever and went to the ER, where I was given Tylenol and sent home.
Where and how did you seek information about sarcomas?
Mainly through the internet and from my physicians.
What treatments have you received?
Over the last seven years, I have received a myriad of chemotherapies, 45 sessions of radiation, four different surgeries, immunotherapies, maintenance drugs, and multiple clinical trials.
Whatʼs the best piece of advice, you received once you received your diagnosis?
The best piece of advice I received once I was diagnosed was to trust in my own strength and ability and to know that if I ever get tired, I have people around me who will not let me quit the fight.
What do you do to deal with the stress that comes with a cancer diagnosis?
Stress and trauma are very real things that come along a cancer diagnosis and, more so, living with cancer. I have recently started to take care of my mental health to help mitigate a lot of the symptoms that come along with the stress/trauma. I also keep myself busy – whether it's with work, school, or hanging out with friends. On multiple occasions, I have been told to let the doctor's stress about it. However, I don't operate that way. I like to be in control of my health trajectory, so the fact that I don't have power in this situation consistently stresses me out. With that said, as much as I try to deal with the stress, it won't ever go away.
What makes you feel strong?
My support system – I wouldn't be here without them.
Whatʼs your biggest fear?
Dying too soon – I have worked so hard and know I have so much to give back to the world, and I don't want to be stripped of that opportunity.
Whatʼs the most annoying thing people say to you?
I made it a point to never fall victim to my disease. Unfortunately, though, people associate cancer with looking frail, pale, and sick. So the most annoying thing people say is, "oh wow, but you don't look sick."
What helps keep your spirits up?
My friends, boyfriend, family and surprisingly school. They give me a sense of the normal I used to have and being able to accomplish something makes me feel like I still have the independence I once wanted.
What gives you hope during this time?
Medicine and my support system which also includes my family at my sarcoma clinic. The advancements that have come around in medicine and that keep coming around are incredible. When I got diagnosed, my only options were chemo, radiation, and surgery. Now, when one treatment doesn't work, I am given at least three other options, and that, to me, is the greatest source of hope and peace of mind anyone can ask for.