My Journey with MFS: Seeing Boston’s Top Doctors

*MFS stands for myxofibrosarcoma (mix-O-fibro-sarcoma)*

Unfortunately, I have known too many friends and colleagues who have “made the trip” down to Boston.  The trip to see some of the best doctors in the world to get answers and treatments for cancer, rare diagnoses, and many other ailments.

I always, for better or worse, considered myself lucky; lucky that I didn’t need to see experts or have any complicated diagnoses.  But now, I have joined the club of those that have made the trek down to Boston for medical reasons.  

As we drive down to Boston, I am distinctly aware of the place that I am in; a limbo of sorts between what was and what is going to be.  An official departure of life as I knew it but not yet at an arrival of what life is going to be.  This feeling is familiar but I can’t place where I have felt this before.  It’s only once my husband parks the car in the hospital parking garage, and we grab a quick bite of our packed lunches, do I remember where I have felt this before: arriving at the labor and delivery unit for the pending birth of our daughter.  

While nostalgia draws me into that time and lets me linger, it also distorts my memories.  Today, the memory of that limbo is heavily filtered where everything about that time seems perfect and synced to some Enya song from her Memory of Trees soundtrack because we were able to have the outcome we desired; the healthy arrival of our daughter.  In reality, I was as scared back then as I felt parked in the truck today. 

Anyway, I digress…

I am under the care of a team of doctors at Mass General Bridgham, specifically the Orthopaedic Oncology Department and Center for Sarcoma.

I wasn’t sure what to expect from this initial team meeting.  I had images in my mind of sitting in big oversized chairs with a doctor behind a dark stained mahogany desk surrounded by academic textbooks handing out a rigid, void-of-emotion, treatment plan. 

In reality, it was the complete opposite. 

We were brought into a sterile, small exam room where my vitals were checked like I was being seen for strep throat and then a series of casual, yet overwhelming, conversations took place.  

If you swapped out the sterile exam room for a campfire and replaced the notebooks and pens in our hands with beers, you would have never guessed that we were talking about treatment for a rare sarcoma.  It was THAT casual.

Needless to say, we were really impressed by the team.  Impressed, of course, by their expertise but also for their sincere empathy and compassion about this journey I would soon be embarking on.

So, who makes up my medical team?

• An Orthopaedic Oncologist:  This is captain of the team, so to speak.  He will be overseeing my entire care, along with my surgery (more on that later).
• A Plastic Surgeon: Part of the Surgery Team.
• A Chemotherapy Oncologist:  While I will not be receiving chemotherapy, this Oncologist will follow my journey, receive updates on my care, and be there should I need that course of treatment.
• A Radiation Oncologist:  I will be working with this Oncologist later on in my treatment.
• A Social Worker:  I will be working with a social worker to navigate some of the internal systems of care like housing, gas cards, etc.

I feel like I have the BEST team to help tackle this cancer shit.  It feels like a rock star team, the best minds working together to give me the best possible outcome. More to come on treatment in the next post.

As always, thanks for following along! ~ Natalie