Hi, there – long time, no see!
Things have been quiet on the blog for the sheer fact that with life itself has been relatively quiet, for which I’m grateful. You truly learn to love quiet when you’ve been on a roller coaster for almost a year. The past month and change was a mix of good days and bad days, with the good far outnumbering the bad. Here are some updates on the important stuff – with other updates to come.
Back before my birthday, I asked for donations to the Desmoid Tumor Research Foundation. The DTRF is the only organization in the world dedicated to the research and treatment of desmoid tumors, and it’s been a critical resource since I was diagnosed in February. I set a team donation goal of $500 and shared the link here on the blog and on my personal facebook page.
In a matter of days, I adjusted that goal to $1,000, then raised it again to $2,500. Here we are, three months later, and you have generously donated over $9,300. Never in a million years did I think I’d be fortunate enough to receive that kind of generosity and financial support.
I do not believe that money solves problems, but it certainly makes some issues more manageable. In this instance, your donations are primarily funding grants for research – some of which I’ll be able to hear about in September at the annual Patient Meeting. I mean it when I say that each dollar is one step closer to figuring out how we can treat this and be tumor-free once and for all. I can’t thank you enough.
Running for Answers 5k
The Running for Answers 5k in Fairmount Park is the day following the annual patient meeting in Philadelphia. I’ve seen photos of this event, and if I could design a 5k, this would be it. There is a “crazy socks” contest and post-run yoga. And to sweeten the deal a bit more, there’s free cheesesteaks and ice cream as well. If there is a more Philly way to do a 5k, I haven’t yet heard of it.
What I’m really excited to share is that I have been asked to be the Featured Speaker before the 5k this year (!!) I’ll be sharing a bit about my story, kicking off the race, and doing my best to put all those articulation exercises from years of rehearsal to good use.
I guess this opportunity officially makes me a motivational speaker! I will be drawing inspiration from one of my favorites, Matt Foley.
Our team, the Unicorn Squad, met the 15 x 15 challenge, which means that since we had 15 team members by June 15, all the team members will be getting a custom designed Unicorn Squad tshirt. I’ve picked out the color myself and am working with our graphic designer to come up with something fun and memorable!
Heads up: If you want to register for the 5k AND get the Unicorn Squad tshirt, you have to register by August 1. (That’s this Wednesday, in case you don’t have a calendar close.) You can sign up here by clicking “Join Team.” You’re of course welcome to register after August 1, but you won’t be able to receive the tshirt.
*Please note that when you register, a fundraising page will be automatically created for you. Please feel no obligation to raise additional funds. Just having you join us is gift enough!
With my treatment now stabilized, I asked my doctor for a script for physical therapy. My amazing PT, Alexandra, certainly had her work cut out for her. It’s hard to pinpoint what is realistic, since I’m not recovering from a specific injury. Since September, I’ve had a loss in my range of motion as well as little remaining strength in my rotator cuff muscles and arm. I felt like I was “picking up” my shoulder and putting it into its socket all day, which quickly tired out and aggravated the muscles around it. In addition to shoulder pain, I had a lot of tumor pain and neck pain as well.
Let’s talk anatomy for a second. You have a group of muscles that contribute to shoulder movement. My tumor is in my pectoralis major and has pushed my pectoralis minor out, towards my armpit. It measured on my last scan 2.2 in by 4.1 in by 2.8 inches. (As a point of comparison, that’s the size of the screen on an iPhone 7 – but 11 times thicker.) So my pectoralis major and minor can’t pull their weight – literally – when doing the work to help my muscles move properly.
What is it like when two muscles have been hijacked and can’t function normally? Imagine you hire a bunch of people to move a piano. They’re all pros, they’ve been in the business for nearly 30 years. They come highly recommended – “the only ones to do the job right!” – and move that baby grand expertly every time. But when they show up to your house, two of the movers have anvils strapped to their backs. The other movers have to try and compensate, get tired out more quickly, and can’t move that piano as well as they did before. Lots of pinched fingers and toes, and maybe a couple of drops. Ouch.
Yet in a little over a month, the gains I’ve made have been extraordinary. I’m now able to reach my right arm up over my head almost as fully as I normally do on my left. It’s my latest party trick! (This may seem small, but getting dressed just got a heck of a lot easier! I can lift my arm out to my side with less pain and just more of a “click” in the joint. My neck pain is virtually gone. My need for painkillers has decreased immensely, with the stretches and strengthening exercises now helping with feelings of soreness and pain. I’m now able to manage the pain effectively with ibuprofen and the heavy duty meds around once a week, at most.
These small gains make the ordinary seem extraordinary. Before I got out of bed earlier last week, I did one of those big stretches where I stretched from my toes to the tips of my fingers. And it actually felt satisfying. Not like I was holding back or tiptoeing around, hoping not to be in pain. It was the stretch my body had been needing since September.
I think I actually laughed out loud before promptly bursting into tears.
After 28 years of normalcy, my life has been thrust in a different direction. It’s easy for me to look around and see the missing pieces. There’s the empty space on my calendar which used to be filled with rehearsals and plans crossed out on days I wasn’t feeling well. I’ve got a pile of wrappers in the trash from ginger candy, which I rely on to get me through days full of nausea. As I cheered my friends who were nominated for Perry Awards this year, I couldn’t help but feel a twinge of sadness that I wasn’t able to perform this past season.
But what’s left is important. It’s not the kind of triumph I’ve celebrated before, but the stakes have changed.
Lately, I’ve been reading a lot of Mary Oliver – she’s one of my favorites. This poem, in particular, spoke to me on a recent morning:
Be still, my soul, and steadfast.
Earth and heaven both are still watching
though time is draining from the clock
and your walk, that was confident and quick,
has become slow.
So, be slow if you must, but let
the heart still play its true part.
Love still as once you loved, deeply
and without patience. Let God and the world
know you are grateful. That the gift has been given.
I lose my way and I keep my head turned to the past. We all do, sometimes. I will stare at my empty plate and ignore the bountiful table set before me. I need to walk slowly when I used to run, and I fill with sadness knowing there might not be a day when I can run again.
But then I catch sight of fireflies in a field, or a sunset in its full glory, or someone will say something so funny I will laugh until my stomach hurts.
I have slowed down. But I am grateful.