I was 22 years old when my doctor found a mass the size of a grapefruit in my belly. At the time, I had just graduated college and was living in Arizona. I’ll never forget sitting in that doctor’s office by myself, thousands of miles away from close friends and family. It was the beginning of a whirlwind. Between the ages of 22 and 26, life was filled with three surgeries, trying to win the game of taming my beast of a tumor, and managing my chronic cancer.
It’s been ten years — a decade — that I’ve been living with this extremely rare pelvic sarcoma. There are about 350 reported cases in the world. Following my first surgery and a lot of research, I landed at Dana Farber in Boston for my treatment, where they had seen two other cases. Eventually, my doctors got me on a combination of hormonal suppressants that shrunk the tumor and kept it dormant, a task we’ll be working on for the rest of my life.
When the roller coaster of cancer’s gone, cancer’s back, surgery is scheduled, tumor’s back, and so forth, started to slow down, I realized I was not only alone in my cancer because it was so rare, but I was also alone in the fact that I was in my early 20s and having to deal with something completely atypical for someone my age. But thanks to my nurse, I discovered First Descents, and that is when everything shifted for me.
“I realized I was not only alone in my cancer because it was so rare, but I was also alone in the fact that I was in my early 20s and having to deal with something completely atypical for someone my age.”
In the summer of 2015, I found myself in Estes Park, Colorado rock climbing with a bunch of other bad ass young adult cancer survivors. I was doing things that I would have previously said “no way” to. I was pushing past my fears all because First Descents showed me how, and the people I met could bear the weight of my story and be in my grief with me. After that I found myself on more FD adventures: rappelling caves in Thailand and paddling whitewater in Montana. I still hold on to the rush, the shock and the pride that I’ve felt with First Descents. It’s a magic you discover when you push past what you think is possible.
On my FD adventures I learned what it meant to be present – to be “in it.” All the beauty, and all of the weight. Prior to cancer, prior to First Descents, I never really knew the meaning of being “in it.” I was just moving along, checking off all of the life accomplishments I thought I should. I think a lot of people are scared to sit in deep, dark moments. I also think a lot of our loved ones are scared to see us there, and let us be there. The thing is – to really cope, accept and deal with what you are going through you have to get comfortable sitting in it. Even if it’s pitch black. Ultimately, I think practicing this presence helps us become better versions of ourselves and prepares us for the inevitable curveballs life is going to throw.
For me, one of those curveballs came on a Friday morning in September of 2018. I woke up in excruciating pain, vomiting, and with a temperature of 103 degrees. When I tried to walk, my legs gave out and began spasming. I was alone and terrified, and dialed 911 for an ambulance. I had to drag myself on my butt to open the door for the EMTs.
Surprisingly, it was my first ambulance ride. I got to the emergency room at 8 a.m. and they didn’t figure out what was wrong until 4 p.m. Many painful tests later, I learned that I had an abscess on my right ovary. I was terrified because if an abscess ruptures you can get sepsis. I was also scared because I had already lost my left ovary in one of my previous surgeries, and was devastated by the idea of losing the one remaining.
They admitted me to the hospital for a few days to simultaneously pump me with two antibiotics through an IV. They sent me home on even more antibiotics and, following yet another trip to the emergency room about a week and a half later, the abscess started to resolve.
Physically I was getting better, but mentally I was not. After this whole incident, I faced mental health challenges like I’d never experienced before. As my nurse said, “my well was dry.” The trauma from being so sick and calling the ambulance, combined with all of the antibiotics they pumped into me, depleted my body of everything. I also think my system was just shot from living in fight or flight mode for eight years with chronic cancer. Suddenly, I was having panic attacks and feeling extremely depressed. I felt so, so, so out of control. On top of it all, I have no estrogen in my body due to the cancer medications I am on, which further heightened my depression and anxiety.
Needless to say, October 2018 through January 2019 were the hardest months of my life. I remember telling my mom I would rather have another surgery than feel how I was feeling. I took a leave from work, and the week I came back, it took every ounce of my being to get through the days. At the end of each day, I would make it to my car feeling like my legs were going to give out, and call my parents hyperventilating.
But – I survived. I enlisted my army of resources and support, and I fought. The journey was extremely hard for me because I couldn’t attack it like other things in life. It was new, it was not something I could put a plan in place for, and it was not a linear recovery. I had to develop different skills and take advantage of new support systems to navigate it all. Most days, I felt like I wanted to jump out of my skin. But, little by little, I learned to be in it.
“It was not something I could put a plan in place for, and it was not a linear recovery…but, little by little, I learned to be in it.”
Come the spring of 2019, I had turned a corner, and I was feeling ready for another First Descents adventure. This time, I fundraised to attend an international FDX program in Ireland. I had lots of anxieties and fears, but after everything I had endured that winter, I knew I had the tools to take on this challenge. I also knew I would have my FD family to lean on.
The biggest test for me came on our “choose your own adventure” day in Ireland. My friend and I randomly fell into this opportunity to rock climb. When we got to the climbing area, we realized we would be scaling exposed Irish sea cliffs… Holy ****! It was breathtakingly beautiful, but I was so nervous. My anxiety was presenting itself in new ways, and I found myself facing questions like: will my legs hold up? Will I have a panic attack?
Soon, our Irish guides helped us traverse down to the ledge and then we got geared up. The plan was for us to rappel down and climb back up while they belayed us from the top of the cliff. I offered to go first – mainly to save myself the anticipation of waiting, but also because I knew I could do it. I went for it…and it was wild; rappelling down as I heard the waves crashing below…surreal.
Once I gave the signal that I was at the bottom, I adjusted my ropes and began to climb back up. Pure adrenaline. One of the most unreal experiences I’ve ever had. I thought to myself, “Totes you just climbed Irish sea cliffs, and less than a year ago you were scared to go to the grocery store because you thought your legs would fail you.”
I really can’t put the power of that day into words. I don’t think – I know – that I was able to experience those moments of power and release because I lived in the grief and the pain of the previous year, stayed present in it, and ultimately worked through it – and am still working through it. On those cliffs, all I had been coping with came to a head, and I had embraced the opportunity to push past my limits so I could really be in this life.
Staying present has been on my mind a lot lately, given the pandemic we are living through. Much like cancer, this time is beyond strange – an incomprehensible situation that we never expected to experience in our lifetime. I hate that life is on pause right now. I hate the global grieving, and the unfairness we’re facing. But, I am in it. We all are. I hope to look back on this time and be proud of how I showed up for others, connected with old friends, helped our healthcare heroes through my job – but most importantly showed up for myself, because I’m no good to anyone or anything unless I do that first.
In the end, I think First Descents has helped prepare me for this time of uncertainty, and has given me coping skills to get through it. My time with FD has extended well beyond the moment-in-time trips; it is now a way of living for me. I am more comfortable accepting the harsh realities of this pandemic, and I am not running from it. I am sitting in the weird. I’m trying to be just a little comfortable in the uncomfortable, because I have learned that pretending this isn’t happening, being angry about it, or being in denial won’t serve me. Not today, and not later in life. Day by day, breath by breath, I’m staying in it.
16 thoughts on “To Be In It”
What an inspiration! My favorite quote that so many people can likely relate to right now, “I’m trying to be just a little comfortable in the uncomfortable, because I have learned that pretending this isn’t happening, being angry about it, or being in denial won’t serve me.” Thanks for sharing your story, Totes.
Thanks for reading 🙂 xoxoxo
Totes! Thanks for sharing your story! You were an awesome camp mom and it was a pleasure to kayak with you 🙂
Pi!! Thank you for reading and it was such a pleasure to kayak with you too xoxo
Thank you for sharing your story, Totes! It says a great deal that you were able to be so present for me and our fellow FDers on our trip last year. Thank you for letting me — and helping me — be “in it.” <3
Wombat! Thank you for reading…I love seeing you out living it on Facebook. We are all “in it” together. Sending love. xoxox
Totes, how incredible! I am in awe of you and the strength you show everyday. You are fierce and take on new challenges head on every time! I’m so glad we met through FD <3
Back at you my friend! So grateful to have you in my life thanks to FD xo.
Totes, you are truly a role model and someone who has touched my life forever. I am grateful for all the moments FD has given us and the memories I cherish from our week on the river. You taught me how to be courageous and brave because YOU are courageous and brave. I simply
Learned from the best. I can’t wait till we meet again! Love ya totes aka mom
My Thena girl! Thank you so much for these sweet words. Being able to watch your FD journey that week was SUCH a gift to me that I will take with me everywhere I go. Keep being you and spreading your light in this world. xoxoxo
My sweet angel Totes!!!! Proud to know you is an understatement. Your daily strength always amazes me. I love you so much my beautiful friend xoxo Athena
Aww, back at you! Love you tons!!
QUEEEEEEN!!!! I am so endlessly inspired by you. YOU are the gift that keeps on giving. I love you and your grit and bravery to share your story, climb mountains, ride rapids, and smile and hug and laugh and start dance parties with everyone in FD. EVERYONE. Your energy is so infectious. You keep us all in it. I’m smiling ear to ear just writing this and thinking about you. LOVE YOU SO MUCH!
OMG! Mo – love you tons!! So, so lucky and happy to have shared space and amazing FD experiences with you. xoxo
Love all of this so much!! You are such an inspiration. Love youuuu!
awww thanks, my love!! love you!!