Myxofibrosarcoma Warrior Shares her Story with SarcomaStrong

Interview completed February 2022 with Aileen Flach by Alvarho Guzman, Albany Medical College student

I live in Castleton with my husband Kolby and our two teenage sons, Luca (15) and Landon (17). Our whole family is pretty active, and we spend a lot of time on the sidelines of our boys’ various sports teams, they both play soccer, basketball and tennis. As a family, tennis is the one activity we all tend to like to do together. Before my diagnosis, I had been practicing yoga every day.

How did you first notice the sarcoma? I was visiting with a friend one night, having a cocktail after a long week, and I just happened to feel a strange lump on my thigh. At first I thought maybe I pulled something doing yoga, but it was strange that it was painless. I saw a provider at my worksite clinic, and she mentioned that I might need an ultrasound if it didn’t start to resolve. I promptly scheduled an appointment with my primary care doctor and within one week’s time I had an ultrasound, and MRI and my first appointment and needle biopsy with Dr. DiCaprio and Brad.

Have you ever heard of sarcoma before your diagnosis? I had heard of it and knew that it was cancer. I didn’t realize how rare it was.

Did you have anxiety initially? Absolutely. I was terrified. I was 48 at the time of my diagnosis and had no idea how to feel. Knowing how rare sarcoma is added to the stress. This all happened right around our oldest son’s birthday. We canceled our first family vacation in 3 years so I could start radiation right away. I immediately started envisioning all of the milestones in my boys’ lives that I would miss. I won’t lie and say I didn’t catastrophize in my head because I absolutely did. Leading up to initial treatment? Once my treatments started, I felt better. Knowing I was doing something to treat it made me feel focused and productive. I had a surgery date so there was an end-game. Once I started treating Post procedure/now? I had a little bit of a setback after my first surgery and elected to have a second procedure to address it. I’m looking forward to healing up and moving forward!

How did sarcoma impact your daily life (physical and psychological)? I didn’t realize how long the recovery would be. I’m pretty young and healthy, I’ve always bounced right back from illness, surgery, you name it. This experience has definitely humbled me in some ways. I’ve learned that healing takes time and patience, and I am definitely not a patient person. Having my kids help me put my shoes and socks on is a bit of a role reversal! I do give myself credit though. I’ve continued to work, see my friends, live my life- some days I feel scared, but most days I feel like titanium! Sarcoma has forced me to put what’s really important into perspective- I’ve learned to put more focus on my family and making sure I’m physically and mentally present as much as possible!

How did sarcoma impact any long-term goals you had? Not really, I’m pretty focused on living in the moment right now. It’s my oldest son’s senior year of high school. We’re looking forward to his graduation and next step to college. All of that has been a fun focal point and distraction.

How are you doing post-surgery? Do you have any functional deficits? Able to do most things beforehand? I’m now post 2nd surgery, so I still have a post-op drain and stitches. I’m getting around quite well though, and I’m easing my way back into the office more and more each week. I do have some functional deficits, I’ve lost some range of motion in my hamstrings which limits my flexibility…I can tie my shoe on my right foot but just barely. I hope to be able to run around and play tennis again, go to the gym and work out- I just can’t quite push it that far yet.

This is totally extra. I have to tell you how much the support of the people around me has kept me afloat. My husband should win an award. When I’ve been feeling stuck he pushes me forward. He’s been at almost every appointment, acted as my therapist, slept in hospital chairs and driven me everywhere I needed to go for treatment and surgery. My friends have been AMAZING and have showed up for me like crazy- spending time with me, bringing food, gifts, helping with anything I needed, sending messages of support. My surgery was only a few weeks after the Sarcoma Strong 5k, but somehow out of nowhere, I had over 30 people show up at my house that weekend to do the race! I also had a bunch of friends do it remotely. It was awesome. Dr. DiCaprio and his team have been so good to me- truly engaged in getting to know me as a person, putting me at ease as much as they could. I’ve worked with great a team at Dana Farber recently, too but the Albany Med/Bone & Joint Center crew has been top notch. I also have to mention my boss CJ and my coworkers at DeCrescente. They have been so amazing, to this day- they’ve been flexible, interested, supportive and so very kind to me- I’ll never forget it. When you haven’t ever really needed serious support in your life, you learn very quickly how much it actually means to be pulled up by others- it’s life changing!

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