desmoid tumor
support, post-traumatic stress, and vulnerability
I originally wasn’t going to write about my full experience, from getting diagnosed with this rare benign tumor to scheduling the cryoablation procedure, to healing, to having a tumor recurrence, to post-traumatic stress and post-traumatic growth.
I didn’t want to focus on my challenges as much as positive noticings in the world. Then, through my 2nd recovery cycle, I reached a point where I felt it was important to share this side of life. I started looking for other people’s stories who have gone through desmoid tumor experiences and found several online that made me feel less alone in this.
Through some self-reflection, I realized I should also put my story out there with some resources that have been helping me. Maybe something I share will connect with someone else, even if I never hear of it directly. We’re not alone. And I named this substack “desmoid tumor” to make it easier for someone looking to find it. I did search and didn’t find content that really matched what I was looking for so I’m hopeful this works for others.
Throughout this process, I have been blown away by my partner’s support, friend support, and family support (my parents flew across country for each procedure providing emotional support, physical support, and provided me with the most nourishing food even for weeks after). There were and are days that I get really frustrated. I grieve the exercise I once was able to do and love - the frictionless days. During these times, I am reminded of the continuous love and support that surrounds me - when I need someone to listen, to distract, to provide advice, to sit with me, and more. These people have lifted me up and it brings me joy to know I would do the same for them.
I am currently going through coping motions. I laugh and connect with friends over the phone and the next moment, remember I won’t be able to run like I used to and cry. One moment, I curl up to read a feel-good book and the next, I find a podcast explaining someone else’s experience with desmoid tumors.
Diagnosis > Shock and survival mode > Anxious preparation > Procedure > Recovery > Slow healing > Physical Therapy > Workout classes > Peace > Discomfort > 2nd diagnosis > Shock and survival mode > Anxious what ifs > Procedure > Recovery > Even slower healing > New reality
During this “even slower healing” stage, I’m beginning to learn about what the new reality looks like. There’s fear in the reality not looking like what I expected for myself - filled with running another half marathon one day, hiking tall mountains, and going to a HIIT class to let out pent up energy. The new reality will need to include some accommodations and some new avenues to find excitement in the world.
I’m feeling the motions of pain and confusion after the slightest sidewalk incline. I’m slowing down and still feeling a bit stuck in the new reality. The tumor may take 10 years to fully go away and I still want to live life to my fullest.
I’ve reached a low and the good news is that there is only up from here, although coping and post-traumatic stress comes in waves. I’m beginning to grasp onto a direction, any direction, so I’ll consider this stage the Learning stage.
There’s a podcast I found online through The Injured Athletes Club. So far, I’ve listened to two in the series and I’ll share some of what I learned below:
Olympic High Jumper Priscilla Loomis: Owning Your Narrative
In this session, Priscilla copes with long-Covid which affects her heart and she’s unable to compete in the World Olympics. She experiences uncertainty and doctors give different advice.
Priscilla focuses on owning your narrative. As a star, National Geographic and other headliners came to her during the uncertain time. Sadness and pain may tell a good story but that wasn’t her story. Her narrative was positive with a focus on moving forward with what she can do, not focused on what others believe she should or should not do.
Paralympic Rugby Player and Coach Joe Delagrave: Defining Yourself (Highly recommend a listen)
In this session, Joe tells his story of experiencing a life-altering boat related injury when he was 19, causing him to become quadriplegic.
Joe describes himself as an athlete, a father, a husband, and more. His identity isn’t limited to his disability. He shares his experience of identity loss through not being able to be part of his athletic community, a turning point, and a newfound paralympic rugby group where he becomes the coach. He’s also a keynote speaker and supports many people going through loss and change.
I also did some Desmoid Community research and found the Desmoid Tumor Research Foundation.
Through some exploring, I found Mental Health Tools for the Desmoid Patient.
There are webinars led by Licensed Clinical Social Worker (LCSW) and desmoid tumor patient, Ashley Williams.
She teaches about how the brain processes post-traumatic stress and articulately walks through coping strategies. I suggest anyone going through this to listen. I also suggest caregivers and friends to listen too as there is advice on how to support someone going through medical trauma, which is helpful beyond the desmoid community.
Here are a couple screenshots that showcase the type of content shared in these webinars:
I also plan to share this foundation with my community and for my birthday, ask for donations to the Desmoid Tumor Research Foundation (DTRF). September is National Desmoid Tumor Awareness month and I plan to make this month special as a desmoid tumor survivor.
My partner and I have discussed all of this at great length. There are a few topics that we really dove into.
Support and empathy
What does this look like for us and in different moments through recovery? What does support look like during the lows and during the highs? What do I need and how can I express that with clarity to be kind? When do I need space and time alone to process? What does my partner need and how can I support him? These questions initiate real, authentic conversations and the answers will likely change over time, especially as we gain new information to base our answers from.
Spirituality
We are both more science-led people in our decision making. We both want to gain as much research and evidence to make the best decision with the information we have, especially when it comes to health and medical procedures. Recently, I have tapped more into my spiritual side. My partner fully supports my finding myself through this experience (and I’ll always say, relationships are strong when both people can grow independently and together). I’m exploring the idea that experiences are meant to happen and you are meant to grow and learn. We debate this because there are examples in the world that could lead people to do horrible things and argue that they were meant to do that. But in whole, believing in a sense of fate makes it easier to feel connected to the world (a broader community than self), and release any blame - more of the it is what it is, we do what we can, we try our best, we move forward perspective on life. I’m beginning to read more books around Buddhism and again, am in a Learning stage figuring out how I want to respond to medical trauma. My substacks are all time-stamped. I’ll never complete my learning and my writing showcases the process of growth.
Past, Present, and Future
We are at an interesting time - planning our beautiful wedding, overcoming medical challenges (clearly), and both work remote jobs with flexibility (just a year into my work-from-home role). There are many experiences that led us to where we are today. So many travels together matched with so many homemade breakfasts we eat together every morning. Job changes matched with making our apartment a home. Getting engaged matched with all our dates and non-dates getting to know each other. We really don’t know what our future looks like and we are working together, making decisions one step at a time.
I do want to take a moment to really explain what happened in the hopes this may make someone feel seen and understood, even if for just the few minutes spent reading this.
When I began working from home, it took some time to find a new routine. I fell out of sorts because when I was teaching, I was up and about all day coming home ready for a nap at 4pm. Working from home, I’m sitting more and had to take more advantage of going to workout classes, which is the best way for me to stay excited about exercise, besides running outside.
I ramped up kind of quickly, and there’s a few moments I pushed myself too hard. One was riding the 5-boro bike tour (60 miles of biking having practiced a portion in advance thinking I was in shape and could do it, which I did) and another was a substitute teacher teaching a workout class at my local gym. The sub had us do lunges back and forth across the room more than what was physically possible for most of the people in the group. I felt some hip/glute pain after this and figured I should rest and it would recover. I rested-ish and then did a bootcamp class, taking it easy because part of my body was strained.
Typically, people feel this strain and after rest, everything recovers. I did rest. Over time, my pain got worse, instead of better. I went to a doctor with this weird feeling, hard mass around my right hip. After a quick run-through, the doctor admitted he didn’t know what it was and that I should go get an MRI. My immediate reaction was that this doctor was incompetent.
I tried another physician. Same result. But this one helped me book the MRI. I was told I had to wait months. I needed to know what it was so I advocated for myself. I consistently called, explained I needed an MRI fast and that my walking mobility was decreasing. I was feeling pain.
Eventually, my advocating magically opened up an MRI availability the next week.
I was told to get an MRI with and without contrast so I did. The results showed a mass, a tumor, and it was unclear whether the tumor was cancerous or not. Wanting the best of the best, I again advocated and became a patient at Memorial Sloan Kettering (MSK) where the top-notch doctors are for people with cancer.
I received a biopsy, an experience I’d like to not go through again, and the results came back benign. A benign desmoid tumor that was growing and pushing on muscles, causing me consistent pain.
Through this, I was connected with a World Desmoid Tumor Leader (a surgeon) who knows as much as there is about desmoids, given there is little data around desmoids. Desmoid tumors happen to about 5 out of 1 million people. Very rare! They are more common in pregnant women in abdomens but can happen when there is a specific, random mutation of cells (typically caused from injury) anywhere in the body, like my right hip/glute area.
After learning about the options of surgery, cryoablation, and chemo pills, I decided to go through with cryoablation. Many people go with surgery because cryoablation is cutting edge and not always available. Some try surgery, have a recurrence (since there’s a 50-60% chance of the tumor regrowing), and then chemo. I’m very fortunate to live where I do and have the access to cryoablation (where the surgeon goes in and creates a frozen ball around the tumor to kill the cells and eventually, the tumor decreases in size, less like to recur). There’s still a 30% chance of reoccurrence from cryoablation, which I experienced, but it’s typically much smaller and requires a smaller 2nd cryoablation procedure, not as difficult as surgery which could continue to cause reoccurrence.
I trust my surgeon too. When going through this process, it’s important to be able to ask any question you have and get as much information as is out there when making a medical decision.
The recovery process will take time. I will take about a year off if not longer from exercise in my lower body especially. I am still working on coping and figuring out what I can do and finding joy in my new reality. I have asked my friends to support me in virtual arm/ab workouts which I am mustering up the courage to begin. I plan to start small and build up, allowing myself grace and the excitement of goals when I’m ready.
A big lesson I learned early on and I hope others use too is how important your voice is. If a doctor says they’ll call you and don’t, call them. Leave a message with their assistant and follow up the next day. You’re not being annoying when you are advocating for medical support you deserve. Hold people to their word and always leave a conversation with a clear next step and time frame. I was able to catch my tumor, although unknown in the beginning, because I was consistent in asking for an MRI as soon as possible.
Part of my new reality are 3-6 month MRI updates. This is when I check to see how I’m doing. Am I healing? Is there another tumor? Has the original tumor shrunk after cryoablation? Is there inflammation around it that may cause concern?
Along with advocating, I also learned there are multiple types of MRI machines. I expressed how the faster one (20 minutes) wasn’t as intense as the 45 minute machine that had more magnetic pull. I asked about the difference, which was minuscule and didn’t impact my specific situation with a tiny bit less clear image. I asked for this machine to be noted in my chart for future use.
Ask. Ask. Ask. No one will do it for you (except do include your closest support system because they may ask questions you didn’t think of). It’s tough to know all the questions to ask when you are in the “shock + survival mode.” Prepare a google doc in advance to jot down ideas and write everything down so you can look back when you can better process.
It’s vulnerable - sharing all this. It makes me appreciate all the writers out there who have shared a challenge with the world. I’m thinking about the stories I read online to make me feel like part of the desmoid community. There was one story about a woman who underwent surgery 6 weeks before her wedding and there didn’t seem to be access to cryoablation in that part of the US. This made me upset because I wish this woman had the cutting edge technology access too - another reason I will ask for donations for this community.
Although I am figuring things out, experiencing the highs and lows, I am grateful to have a strong support system, a strong education to speak to people in the medical field with confidence, and the ability to rest and recover before my next stage in life.
Thank you for reading my story.
