Baby Steps on the Desmoid Journey

Fingers crossed, but it seems like spring has finally sprung and is here to stay.

This was a long winter in more ways than one. But as winter has begun to fade, so have some of the hardest days of the last few months.

While we experienced some dark, dreary days, we have high hope that some of the toughest days are in the past. And just as spring is finally beginning to bloom, brighter days are indeed on the horizon.

The last month has been one of significant progress, but before diving into the details, first, I want to share a few things I’ve come to know about Desmoids.

Desmoid tumors are benign, meaning they do not metastasize and spread to other parts of the body. However, they can move within the area where they first developed. Let me explain.

I had a single tumor in my left leg, which was surgically removed in April 2015. About a year later, we discovered that I had not one tumor, but two along the scar line of my previous tumor – one at the beginning and one at the end. Why? In part because Desmoids are made up of fibroblast cells. In the simplest terms, fibroblasts are cells in the body that help to heal our cuts and scrapes. Once our cut or scrape is healed, our body signals to the cells that they can stop working.

When my tumor was surgically removed in 2015, my body told my cells to heal the wound, but even when their job was done, my body failed to let them know they could stop doing their job. Thus, I ended up with two tumors – one higher up in my left calf and one lower down my leg than the previous tumor.

The higher tumor is very near the back of my knee, and as it grew last year, it caused my gastrocnemius muscle to constrict and, eventually, is what caused my inability to fully straighten my left leg – eliminating the ability to put weight on the leg.

Fast forward to where we are today. Since January, I’ve undergone three rounds of chemo, and while we are uncertain whether or not the tumor has shrunk, my quality of life has drastically improved – our ultimate goal. The battle against Desmoids is a long-term one. With that being the case, my doctor has focused on helping to increase my quality of life so that I can live as normally as possible. And while we sure hope the tumor is shrinking in the process, here is the good news:

My pain is under control. There are good days and bad days still, but there are parts of every day where I feel fairly “normal” and pain-free – a feeling I had quite honestly failed to believe I would ever feel again.

Two weeks ago, I began to be able to walk (on a bent leg) around the house with the aid of one crutch. After doing that for about a week, I decided I could start to walk around at work from time to time. At the end of the week, I was hardly using my knee scooter, a previous lifeline. And as of this week, I have managed a full day with the aid of only one crutch. Again, this doesn’t come without hardship – days start out with significantly sore muscles. And walking on a bent leg isn’t easy, but it’s progress. And it’s progress that will build up over time to get me to where I need to be.

And finally, just last week I met with a physiatrist, and we are building a plan where I will work with a physical therapist to gain increased mobility. There is a full mix of emotions that come with this – namely fear and excitement. Excitement because we are in a spot that I wasn’t sure we’d be at until the fall of this year. Fear because regaining muscle and learning to walk again will not be a simple task. And because Desmoids can grow via injury, there is the fear that injury will occur and spur the growth of my tumor. This may be the most significant obstacle I currently face.

While we are taking baby steps on this journey, the last few weeks have left me extremely optimistic. On hard days, all I have to do is think back on the darkest days in December and it doesn’t take long to realize just how far we’ve come. Here are to brighter days ahead.