Samantha Ulloa

Spotlight on Samantha Ulloa

We are proud to introduce Samantha (Sammy) Ulloa as our incoming MIB Agents Junior Advisory Board President!  Sammy has been a member of the Junior Advisory Board and panelist on both our OsteoBites webinar series and our osTEAo AYA podcast. A native Californian, Sammy was diagnosed in 2022 when she was 19 and is NED now at 21 years old. We asked Sammy to share her thoughts on the transition from treatment to monitoring, her experiences this year on the Junior Advisory Board, and what she hopes to accomplish in the next year in her leadership role.

‍

Can you share your osteosarcoma story with us? How were you diagnosed, what was your treatment, and what kind of surgery did you have?

Prior to my diagnosis I was a division 1 cross country and track athlete. I began experiencing pain in my right upper tibia a year before my tumor was found. I continued to train despite the pain until an MRI was taken that confirmed I had a malignant tumor. I was diagnosed on August 19th, 2022 at the age of 19 just 5 days shy of my 20th birthday. I began treatment at Loma Linda in the pediatric oncology unit immediately following my diagnosis. The chemotherapy drugs that I received throughout my treatment were high dose Doxorubicin, Methotrexate, and Cisplatin. After a few months of treatment on November 22nd, 2022 I underwent an extensive limb salvage surgery and now have an internal prosthetic in my leg. I completed treatment May 7th, 2023 and am currently 1 year and 3 months NED.

‍

You are now two years out from diagnosis and over a year out of treatment! What advice/tips would you give to newly diagnosed Osteosarcoma Warriors to help them get through the first year of treatment?

I would say to try to not lose hope despite how daunting it all can feel. Throughout my treatment I held onto myself so tight and refused to let my light dim when things felt tough. I would try to remind myself that I am still me even with all the change that was out of my control and that there's always hope beyond what you see. Our worth does not diminish because of cancer. We are still important, we still deserve love, and life can still be beautiful. Find the things that bring you joy and do those things. One of those things for me was coloring which sounds super basic but I found peace doing something simple like that. My hands would shake from being weak and I would color outside of the lines, it wasn't alway the prettiest but it made me happy so I never stopped. Another thing is to surround yourself with people that make you feel loved. My favorite hospital days were when my two best friends would come visit me, to them I wasn’t just my cancer I was still me and that was so refreshing to feel. Embrace your support system, my sister and my mom were my constants during all the uncertainty and I felt so safe knowing they were unconditionally there for me. It’s all easier said than done, just remember that cancer’s tough but you’re tougher.

What tips would you give to family/friends on how to best support the OsteoWarriors in their lives?

I cannot stress enough how important consistency is for us cancer patients. Everything feels up in the air but to know that you have people in your life who provide unwavering support means a lot. Sometimes we want space to process it all so don’t take it personally if your loved one asks for time to themself every once in a while. And for friends and family who maybe can’t be present in person for their unloved one there are definitely ways to make your warrior not feel forgotten and feel supported. I had friends and family who would send me care packages or letters and I remember how much I would look forward to receiving those things. As a young adult another way my friends would help me smile was sending me silly videos on TikTok or memes on Instagram. It seems small but being isolated in the hospital for days/weeks at a time can be lonely and boring so I would feel special when they would share things that would take my mind off my cancer and make me laugh.

The first year after completing treatment can be challenging for many reasons - the constant scanxiety and the transition from being constantly in the hospital for treatment to just monitoring. How has this first year of transition been for you?

The adjustment has been tricky to navigate, I am still trying to grapple with my new reality and it’s been over a year. I struggle a lot with anxiety post-cancer, it can sometimes feel so overwhelming it can be debilitating. Cancer is never truly done with us, we carry it everyday in ways that most people probably don’t think about. Especially leading up to scans or appointments I have to fight to not allow myself to shut down. I tend to be very talkative but when my anxiety worsens you know it's bad because I go non-verbal. I regularly consult with a therapist which has been so helpful and I am currently trying to figure out my medication situation. There is a negative stigma surrounding mental health but it's absolutely nothing to be ashamed of. At the end of the day, I’m just a girl trying to navigate life best I can. I am still young and just trying to find my place in the world after cancer. I am bound to make mistakes, but as I adjust to the transition I remind myself constantly that I am very lucky to be here. Everyday is a blessing and everyday is a new opportunity to better myself.

You joined the MIB Junior Advisory Board earlier this year. What have been some of your more meaningful and/or memorable experiences as a JAB member so far?

The most memorable experience for me has been FACTOR. I left the conference with new friendships, unforgettable memories, and a stronger internal drive to make a difference within the oseto-community. Prior to FACTOR I had only met one individual who has had osteosarcoma and meeting so many amazing warriors gave me a sense of belonging that I had been searching for since my diagnosis. Being surrounded by individuals who understood my experience was incredible beyond words, I don’t feel alone anymore. I had no idea that I was lost and FACTOR helped me find myself again. I am on a journey to better myself and impact the world in a meaningful way and I have everyone I met there to thank. Being a part of the JAB is such an honor, those on the board aren’t just board members to me they’re my friends and I care for each one of them so deeply. They’re all so amazing and I will never stop being grateful for the opportunity to make it better alongside all of them. Shoutout to Ann for making this all possible, I cannot thank her enough for bringing us all together. She is truly one of the purest souls I have ever met.

As incoming President of the Junior Advisory Board, what do you hope to accomplish and are there specific AYA topics that are especially important to you?

I try my best to move with love on the forefront of my mind in every aspect of my life and I am going to approach this role with that same mindset. My goal is to spread happiness and positivity in any way I can. I want everyone who I have the privilege of interacting with to feel that they are important, loved, heard, and seen. I will use this platform to continue to advocate and spread awareness about osteosarcoma and AYA cancer as a whole. There are a lot of topics that seem to be tiptoed around because of how intrusive or vulnerable they can be and my goal is to talk about all those unasked topics. Sharing my experience can help improve care for AYA patients that come after me so I am an open book when it comes to the tough questions. Specifically I feel very strongly about the way mental health is not given enough attention at times when it comes to young adults with cancer. Cancer affects us mentally, physically, and emotionally both during and after treatment so I will advocate for discussions to be had surrounding that. It is not enough to just throw medication at us, the approach needs to be changed we need to do better.

What else are you currently up to and what do you like to do in your downtime to relax and decompress?

I really enjoy reading in my down time or listening to music and self-reflecting. I am currently still working towards earning a degree in biology but in my down time I spend a lot of time out and about with friends and family. The post-treatment sense of freedom is something I’ve come to cherish very much. I remember being in the hospital and feeling trapped, everything was repetitive and my mind, body, and soul suffered a lot because of it. Now although I am disabled I live my life to the fullest, I have traveled quite a bit this summer and I constantly find myself in awe with how beautiful life can be. I see it all through a new lens, I feel it all so intensely, and I recognize how blessed I am to still be here to experience it all.