A Six-Month Progress Report

Last Wednesday (June 27th) marked my sixth round of treatment.

That statement doesn’t feel real in many ways. It is hard to believe we are six months into this new treatment plan, yet it also feels like yesterday that this path was presented as our next best step.

These past six months have been filled with progress. Forward motion. So for these past six months, I am very grateful. 

Last week proved to be one of the best weeks within the past six months yet, so it seems fitting to share a progress report.

When we started this journey, my oncologist shared that for the treatment option we were pursuing, the standard route would mean treatment on an every four-week basis for eighteen to twenty-four months. So, sticking to that schedule, I’m potentially one-third to one-fourth of the way through treatment. I’d say that’s a good enough reason to do a little happy dance, but we’ll wait until I’m through sharing all the good news. 🙂

Physical Therapy Update

First, the week started off with a trip to my physical therapist. It was my third official visit with my PT (currently, I go once a week) and I’ve known he is an exceptional doctor since my initial consult.

Starting physical therapy, I was extremely nervous. We needed to strike a delicate balance of getting my leg moving again while not disrupting my tumor too much and causing it to grow. From day one, my physical therapist eased my fears, researched what PTs have done in the past related to desmoids, and gave me the confidence to put my full trust in him. This helped me move forward on a path of pushing myself to be as productive as I could be.

Every appointment I’ve gone to, we’ve made progress. And we’ve come to the conclusion that while my knee is pretty pliable and straightening, my ankle is the one giving us a run for our money. It’s extremely tight so our main goal is to loosen it up. But the muscle we are working on runs the full length of my leg, so every bit of progress helps.

There is one particular highlight of my appointment last week I want to share. After my PT worked through some manual therapy (aka loosened up my leg), I did some work on the balance bars. With the assistance of some PT tools, I was able to flatten my foot (still with a bent knee). This may not seem like much, but this was the very first time I’ve had my foot flat on the ground while applying weight on my left leg since the end of November/early December. It was a powerful moment for me.

And that was only Monday.

Oncology Update

On Wednesday, I went in for my normal set of appointments on chemo day (bloodwork, a checkup with my oncologist, and then my chemo infusion).

During my last visit with my oncologist, he had mentioned that following this next round of chemo, he wanted to schedule an MRI. But before we did, he wanted to make one message very clear: we shouldn’t put too much stock in the results of the MRI.

At my last appointment, he repeated the same message. Now, I for one love concrete answers. It’s only human to want some good hard facts every once in a while – especially when dealing with something rare that is linked to a lot of unknowns.

But his point was this: an MRI image doesn’t tell you the full story. The last six months tell the true story of progress. Essentially, he didn’t want me to get too caught up in believing a test was going to tell me more than I already knew.

The MRI is scheduled before my next round of chemo. But instead of focusing on the results, we’ll be celebrating all of the past progress made. There hasn’t been a single month of backward motion, only forward. No matter what the test shows, as long as steady progress continues, we are on the right path.

[And in fact, as all is going well, it may actually present additional options like trying another oral chemo (though it has worse side effects) or taking a month off of infusions just to see how it goes (the chemo could continue to work even with a break).]

When I shared all of this with my family, they weren’t quite as convinced. And I get it. However, for many reasons, I know my oncologist is right. It does not require much effort to think back through Jan / Feb / March / April / May / June and list exactly how life has steadily improved. Life certainly isn’t back to normal, but it is getting closer and closer with every passing day.

Another milestone happened just today. I walked into work crutch in hand only to drop it at my desk and go about my day free of any type of required support. That is progress. And it feels so good.

Physiatrist Update

Finally, I met with my physiatrist last week. It had been about six weeks since we last met, so she caught up on notes from my oncologist and PT, and then we talked through everything. She was excited, but then came the true test. She asked me to walk around so she could evaluate my leg. When I told her I was comfortable moving around without my crutch, she said to go for it.

She stared in disbelief as I walked down the hallway and then said, “I’ve never seen anyone make this much progress in this short of a timeframe.” Those words were music to my ears.

Some Realities / Limitations

There has been a lot of progress. And for that, I am beyond grateful. But as we enter the rehabilitation component of this journey, the going has gotten tough. And so, while I’m excited about the progress, I want to share a few realities as well.

Rehabilitation is a long, difficult process. In fact, nothing about it has been easy. Some examples:

My kneecap hasn’t functioned properly in over six months. When I put pressure on my leg to work through straightening exercises, it’s painful. And when I talked to my physiatrist about it, she said that realistically, I’ll be dealing with that pain for a solid nine months while we work through healing my leg.

In general, physical therapy and stretching are hard. But it has caused me to be forever grateful for my years as a dancer. Those years taught me the difference between pain and discomfort. Let me tell you, there is a lot of discomfort. But without discomfort, progress cannot be made.

This phase of the journey is taking a lot of mental energy. Doing my stretches isn’t easy so I often spend several minutes just telling myself to get my butt in gear and do it, but the reality is, it’s up to me how quickly or slowly we get through this rehabilitation phase. And if I want to get better, I have to keep pushing.

The next step? 

For now, we’ll continue along the current treatment path. Soon, the hope is to start using a dynamic leg brace to help slowly stretch out my leg and ankle and get them back into shape.

The little by little progress is adding up and we continue to celebrate every victory, big and small.