Hi! It’s been a while.
I’ve been meaning to sit down for a few weeks now and get my thoughts on paper, but there simply hasn’t been the time. Since I’ve written last, I started the 2018-2019 school year, cast two productions, began to choreograph one musical, started on directing a full-length play, and started teaching a musical theater class at a local regional theater- all while adjusting to my new daily medication dose. (So, you know, staying busy.)
In all the semi-controlled chaos, there’s been some notable events along the way.
2018 DTRF Patient Meeting
Saturday, September 22 was the 2018 DTRF Patient’s Meeting in Philly. It’s a time for doctors, researchers, and patients to come together to discuss new treatments, studies, and personal experiences. I learned about the patient meeting shortly after my diagnosis and was excited that it was so close to home.
The day before the meeting, I started to feel unwell. I had a cold brewing and the zinc tablets which I normally take to shorten my cold inadvertently made me nauseous. Shortly after lunch, I left work and went home, where I promptly laid down on the couch. I stayed for the rest of the day, only getting up to take Daisy out and fill my water bottle. My stomach hurt, my feet were throbbing, and I felt as though my bones had been replaced with lead pipes. The next morning, I dragged myself out of bed and headed for the meeting. I couldn’t believe it: the one day a year I actually get to meet other patients, and I was in absolutely no mood to socialize. I arrived feeling less than chipper, but miraculously, I turned a corner by the first break. (I’m convinced it was the bagel I was able to eat on the ride over.)
During the presentations, I was learned about recent advancements in treatment. Unfortunately, many of the presentations didn’t apply to me. The most promising study in the Desmoid world is on Nexavar, the drug I’m currently taking. The researcher said that the marker for success is when tumors have shrunk by 30%. Sitting there, I couldn’t help but feel defeated. While it’s exciting for so many others, after 6 months mine has only grown. I’d be happy with only 1% shrinkage, or just for this thing to stop taking over my body! I kept myself from falling into a sour mood with soft pretzels and passing notes to my mom to make her laugh. (Both worked wonders.) There were other two studies which seemed promising on treatments called HIFU and cryoablation, but the researchers mentioned that tumors over 10 cm were usually too large for treatment. In addition, tumors needed to be at least 1 cm away from major nerves for HIFU, and mine is next to my brachial plexus. There was one presentation on a clinical trial that’s coming to Sloan Kettering for which I may be a candidate. The medication works on beta catenin, which is one of the main proteins in the body, through weekly infusions. That trial isn’t launching until next fall, but could be something to consider.
What was most interesting was how even the researchers differed on their approach to desmoid tumors things and their categorization. There was a whole “is it cancer?” segment where one doctor was clear on how these are benign and can be harmless. Another doctor who presented shortly later rebutted with photos of patients with extremely large desmoids and that, while desmoids are “by pathology, benign, they are effectively clinically malignant.” My mom’s assessment: “They’re just so weird!” When I saw my oncologist the following week, he agreed. “After this time of treating them, nothing surprises me about these anymore. They’re completely unpredictable.” We left armed with more information… which, if possible, seemed to make this diagnosis even more strange. I got to see a few people I’d only met via email and get some hugs that were a long time coming! All in all, it was cool to be part of a day that was just about this usually undiscussed diagnosis.
2018 Running for Answers 5k
The next morning, we awoke for the 5k. It was a miserable day, cold and rainy, but I was so focused on my speech and not making a fool of myself that I didn’t pay the weather much attention. I packed my Unicorn Headband, tutu, put on my unicorn socks, and off we went to the race.
We arrived early, and I was due to speak a bit after 8 AM. I got hugs from friends and new friends who traveled to be a part of Race Day and paced nervously around until it was my time to get on stage. I hit the stage and left my notes in my bag. I don’t believe in them, unless you’re delivering the State of the Union or needing to quote historical research. I brought mine as a security blanket, in case I panicked. I decided to swallow my nerves and make the speech happen.
“I don’t remember much of what I said and didn’t say, really. I’ve copied and pasted my speech below so you can read it for yourself – just be sure to imagine the thunderous applause after I’m introduced and the chants of “CHRIS-TI-NA! CHRIS-TI-NA!” once it’s concluded.
Thank you so much for that introduction! I’m Christina. I’m 29 years old and I am a desmoid tumor patient. I’m also an elementary school teacher, director, and choreographer. I’m used to standing in front of groups of people, but usually they’re under four feet tall. Please forgive me if I ask you to sit criss-cross applesauce and give me listening ears.
I started my desmoid journey months before I was actually diagnosed. I went into surgery a year ago next week and when I was out, the doctors told me they didn’t find anything. I started pinballing back and forth from doctor to doctor. On January 30, the doctor told me he believed it was a sarcoma. And he sent me the next day for a biopsy and an MRI. Two weeks later, I found out I was a desmoid tumor patient.
I got the low down from my doctor on how rare this was and scheduled a lineup of appointments, but hadn’t yet found the DTRF. At one point, I even joked to my friends that it was so rare, there probably wasn’t a 5k! That a 5k would just be me, running down the street.
But then I started doing more googling on desmoid tumors and the DTRF came up. I’m so grateful I found it in those early days. I meticulously poured over each and every page. I was thrilled. And there WAS a gathering for people like me! As agonizing as it was to wait the nearly two weeks for a diagnosis, I finally had a name to rally myself behind. I had my first answer. And I like answers. I’m a teacher – when I ask questions, I expect answers.
That’s why I truly love the name of this 5k. This name tells you exactly what we are all about. There’s a million reasons we could say we are running. We are not running for hope – we’ve got that. We heard about advances in research yesterday at the patient meeting. We are not running to make a community – we’ve got that too, as anyone who’s been on the Desmoidian Facebook group will tell you. We are running for answers. The answers we have are not enough. Ask any patient here and they’ll tell you the same thing. We listened yesterday at the Patient’s Meeting to how the answers are showing more promise, but we’re not where we want to be.
I love imagining the answers we are running for in the future. A future where, when a patient asks how we treat these things, a doctor can reply: “Here’s exactly how we’re going to beat this.”A future where, when a patient asks if these tumors come back, a doctor says “no.” Even a future where, someday, when someone says they’ve never heard of a desmoid tumor, we can say: “I know. That’s because we found a cure.” You are contributing to finding those answers by being here today.
If you’re here and didn’t know what a desmoid tumor was when you showed up, THANK YOU. If you’re here because you like to run, and you heard about the cheesesteaks, THANK YOU. Because as great as those are, you could get them elsewhere. Your decision to be here is making a difference.
If you are here because you love someone with a desmoid diagnosis, THANK YOU. You drive us to appointments, sit with us during treatments, make us toast when we’re nauseous, and hold our hands when we tell you we are scared. Because of you, we are reminded of why we fight.
And if you are here as a desmoid tumor patient, THANK YOU. Thank you for not letting fear run your life. You are not just a diagnosis. You are a parent, a child, a friend, a coworker, and so much more than just a pathology report. You are a warrior.
Together, we are the ones we have been waiting for. We are the answer to facing this disease.
With my speech happily over, it was time to walk in the rain. Everyone who walked and ran or just came to hang out was a true champ about it! Once upon a time, before Nexavar started to kick my butt, I had hoped to run the race, but walking it meant that I could chat with my friends who had moved mountains to be there. The route itself was rather pretty, and I’ll be back on Saturday (hopefully this time with sunshine!) for the Lisa’s Army 5k.
After the race, it was time for awards. I had been tracking our fundraising page, so it came as no surprise to me that we won the award for the highest total raised. With $20,551 as our total, we raised 10% of the entire foundation’s goal for the weekend! It was truly incredible to see the fruits of our efforts – truly more yours than mine – become such a spectacular achievement. I’m so grateful to all of you who donated, shared the link, or have been talking about Desmoid Tumors. The more awareness we raise, and the more funds we can allocate for research, the closer we are to finding a way to make the lives of us rare disease patients better.
When it was all said and done, I felt a bit like I was a part of a wedding. I hear from my friends that are married how the day you’ve been planning for ages can go by so quickly. That was definitely my experience – I was so focused on making sure other people were happy or knew where to go that I forgot to take a moment to soak it all in. When I realized this at the end of the day, as the stage was being taken down, I smiled. “Thank goodness there’s next year!” I said out loud to no one in particular, and I shuffled off to get ice cream, satisfied that my work there was done (for now.)