Navigating My Cancer Journey: Insights from Boston

I’ll be honest…I’m kind of dragging my feet putting my thoughts together after my last Boston visit.  Not because we received any bad news (actually, the opposite) but because it’s all starting to get real.  Like real, real.

And with the reality of the treatments beginning soon, grief has been hiding around more corners than I would care to admit.  Grief can sometimes be rude, very rude, sneaking up at the most inopportune times, like when I am about to start a squat set at the gym or blowing out birthday candles.  And it’s for petty and serious things alike; like changing up all our summer camping or for finding/making plans to support my daughter through a journey I thought she would never have to go on.

I digress…

Our Boston visit, complete with seeing a car on fire and then watching it explode on the side of the highway, a SUV crushing their Thule car rack, and subsequently getting stuck in the parking garage, and an 18-wheeler tire in the middle of the turnpike, is always eventful, even without the medical stuff.

Ok..let’s talk about where we are at with MFS:

We learned that MFS has NOT metastasized to my lungs (yah for that!) and that the sarcoma is grade 3 (the most aggressive).  My oncologist tends not to stage this type of cancer in the way I’ve come to know of “traditional” cancer staging but rather has it metastasized or not.  The treatment plan remains the same as previously discussed, with the first surgery to come in just a couple of weeks, and we shared with the Boston team that we intend to pursue radiation treatments in Boston later this year.

Because MFS has a high recurrent rate, I punched my ticket for lots of MRI and CT scans.  MRIs for my elbow and CT scans of my lungs will be every 3 months for 2 years, then every 6 months for 3 years, and then once a year for what feels like, and probably is, for the rest of my life to monitor whether or not MFS decides to return or not.

The high recurrent rate is also the reason we are pursuing radiation treatments in Boston.

I also think it’s worth noting that while we were awaiting the results of the images and this visit to Boston, I had annual blood work completed with the medical provider who oversees my autoimmune disorder (Hashimoto’s Disease).  

Now, you would think that all the inflammation markers we test for would be off the charts (or at least somewhat wacky) because of MFS but..NOPE. 

My inflammation markers are the LOWEST they have been in 7 YEARS!  And… every other test is in an appropriate range of normal!  

These numbers deserve some acknowledgement because this just didn’t happen by chance.  Not a single bit.  20 months ago, I recommitted to a mostly gluten and dairy free diet (because a good french baguette, crunchy spicy tuna rolls, and cheese are worth a little bloat), no more alcohol, weekly strength training, conditioning classes when I can, and better sleep habits.  

What this past week has shown me is that I’m a HEALTHY and STRONG person with cancer and this diagnosis is such a loud reminder to continue to keep my body healthy and strong.

And that brings me to another thing…I am beginning to re-think the term “fighting cancer”.  I know I used this phrase a couple of times in my first blog; probably because it’s the cliche thing to say when you are diagnosed with it. But it just doesn’t fit me. I wanted it to, just like I wanted low rise boot cut jeans to work for me in the early 2000s, but it just doesn’t. Truthfully, I don’t even know how cancer fits into my identity at all right now.

All I know is this: I can. I will. End of Story.

Thanks for reading!

~Natalie