Meet the incomparable duo Camille and Mia, who are OsteoWarriors and co-hosts of the MIB Agents osTEAo AYA podcast which drops the third Thursday each month. Camille and Mia delve into heavy topics with honesty, humor and compassion. We asked them to share their osteo stories with us, how living with cancer has affected their identities, and what inspired them to start osTEAo.
How were you initiated into the osteosarcoma club? How were you diagnosed?
Camille: Growing up I was a competitive Irish dancer, training up to 16 hours a week and competing at a championship level. In 2012, I had just turned 10 years old. I was training for the New England Regional competition and started struggling with immense pain in my right shin. I shrugged it off as a common dancer’s injury and competed at the competition where my team placed 5th out of a competition of 50+ entries. Soon, I felt a bump over my right shin one day at class and knew something wasn’t right. I told my parents, which prompted a visit to my pediatrician, an x-ray, MRI, and bone biopsy. Within a few weeks, by late January of 2013, I was diagnosed with metastatic osteosarcoma in my right tibia and with mets to both of my lungs.
Mia: I had knee pain throughout my freshman year of college, and after multiple misdiagnoses, my doctor found a 2 and a half inch tumor in my right tibia. I was diagnosed with osteosarcoma in September 2018 and had a limb salvage surgery, followed by the MAP protocol. Multiple surgeries and chemo/immunotherapy regimens later, I’m now deemed incurable but stable.
You have both been in treatment for many years, during the most developmental years of your lives. How has growing up with osteosarcoma affected your identity and your outlook on life?
Camille: Growing up with osteosarcoma has definitely impacted how I view myself and the outside world (for better or for worse), especially considering how young I was at diagnosis. I was constantly relapsing, and in and out of the hospital during middle and high school. I never felt a part of the school community or greater community because as a limb salvage recipient, I couldn’t play school sports or Irish dance anymore. I felt hated, isolated, and depressed.
However, it also allowed me to figure out alternative ways to enjoy life. I took up voice lessons and started landing leading roles in local musical theater productions (Johanna in Sweeney Todd, Cinderella in Into The Woods, and Anna in Frozen to name a few). I created a club in my high school called Reach Leadership that fundraises for families struggling with the financial burdens of cancer. It also has a mentorship program that I created, which has ensured its legacy long after my departure from high school (and it’s still going strong!).
To me, it’s important to remind myself that both of these feelings can be true at the same time. I can feel immense grief and sadness for osteosarcoma coming in and completely changing my life path, AND also gratitude for the discoveries I’ve made along the way on this new path.
Mia: My identity was most closely tied to my academic prowess and ambition. I also invest a lot into my platonic relationships. My osteosarcoma journey has caused me to reprioritize by focusing on what I’m grateful for, including the amazing relationships and support in my life. I now know that school will always be there, but my mental well being and loved ones come first. As does seeing the world!
What are your hobbies, what do you do to decompress and what gives you the most joy?
Camille: One of my favorite ways to decompress is to make art. I currently own and operate my own Etsy shop, Camille’s Own, where I sell stickers with original artwork, jewelry, and crochet items. Another way I stay creative is actually through pen paling! I have a few national and international pen pals that I write to and we exchange art and little goodies. Theater and singing have also been a big part of my life after I could no longer Irish dance. I’ve performed in shows, as well as assistant directed and choreographed, and music directed. costumed, and stage-managed several community children’s productions.
Mia: I really love a good espionage/political thriller. I’m a huge Daniel Silva fan and love getting sucked into a great book. I also love watching football, doing my makeup, spending time with my loved ones, and traveling the world (when my medical schedule allows me to).
If you have a mantra that gets you through your bad days, can you share what it is?
Camille: “All things in time. / If not today, if not tomorrow, / Then all things in time – / We can’t predict / What comes to pass. / All we control is how we react / And how we recover. / Something like faith, / Deep in our skin: / Everything in its time.”– Jason Robert Brown, from the song All Things in Time
These lyrics remind me that life can hand us pretty awful situations, but it’s about surviving and coping through the emotions, however that may be. For me, in really hard times, it’s making sure I’m taking care of my basic needs, getting out of the house, and staying connected with friends and family. It’s also making sure I feel my feelings, but not getting sucked down a rabbit hole and having them prevent me from living my life. Feelings aren’t forever. Everything comes together, in time.
Mia: Take it slay by slay!
How did you get the idea to start osTEAo?
Camille: I decided to start osTEAo because I know there are so many patients out there, newly diagnosed or well into their journey, that are scared and looking for answers that Google cannot provide. I decided to start it for the younger versions of myself, so scared, shell-shocked, depressed and hopeless, looking for anyone to speak the language of osteosarcoma and frankly, medical trauma. There was nothing out there, other than meaningless statistics and cold, raw facts about this disease. On osTEAo, we dive much deeper than this.
Mia: Camille is the true mastermind behind it. But the moment she suggested we start a podcast based on our experiences as young adults with osteosarcoma, I was immediately on board. There are more AYA cancer patients than people realize, and our voices are underrepresented. We knew that this podcast was a way to make our voices heard and allow caregivers or doctors to understand our perspectives more.
How do you come up with what topics to cover?
Camille: The topics we focus on are things that Mia and I both have struggled with and have some insight into.
Mia: We have a list of potential topics that we add on to periodically. Most of the topics stem from issues that we think are the least talked about or most prevalent for AYA cancer patients. Usually it’s just Camille and I throwing out ideas and seeing what sticks!
Many of the osTEAo topics are pretty heavy and require you to not only dig deep but put yourselves in a vulnerable place by sharing a lot of very personal feelings with lots of people you don't know. How do you gear up for that and is that something that comes easily to you, or is it a challenge?
Camille: The topics are definitely heavy, and I can say with certainty that therapy has been a huge help in allowing my brain to not follow through on the urge to crawl into a ball and hide, but to get raw, real, and emotional when it’s helpful to myself and others. I am not ashamed to say I’ve been in therapy for all of my years of being an osteosarcoma patient. It’s helped me to feel more comfortable diving in on these hard topics.
Mia: I have four cats and two dogs who provide very silly yet crucial emotional support and entertainment. Spending time with them, talking to my therapist, and running my thoughts by my loved ones (including my MIB pals) keeps me centered. My mom and I have a very open communicative relationship, so being vulnerable comes more naturally to me. It definitely can be emotionally draining, but the experience is so rewarding that I could do it every day if need be.
What are some unexplored topics you plan to cover in the future?
Camille: Some topics we’re thinking about include what it’s like to be on a clinical trial, cancer friends, and medical trauma.
Mia: I’d really love to talk about more taboo topics that are prevalent in the AYA community. Subjects like sex, medical marijuana, and how to approach party scenes I think would be extremely valuable.
What do you hope your audience gets out of osTEAo?
Camille: I hope that osTEAo reaches cancer patients out there that feel lost facing their diagnosis and that Mia, our guests, and I can help remind them that their experience is real and they are not alone.
Mia: I just hope that we can help other AYA cancer patients feel seen and understood. Hopefully, our advice can help caregivers and medical providers understand prevalent issues that our community faces and our perspectives. Even if one person feels more seen, more supported, or more confident during their cancer journey, our efforts are more than worth it.