Month: April 2018

treatment

Detour.

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Did you know chemo can cause issues with your teeth? I didn’t- But now I do!

Because I need a root canal.

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Musical theatre reference courtesy of Steve Martin. Image courtesy of pinterest.

Here’s the scoop: I’ve had a spot of sensitivity since my last cleaning in December or January. (Who really knows when; it’s all a blur.) Then I got diagnosed, started my medication, and bam!  Excruciating pain since last Friday. My oncologist advised me to hold off on my medication to see if it was a side effect. No such luck. I went to the dentist this past Wednesday. I was x-rayed and the proclamation was made: it was time for a good old-fashioned drill party. (But first, I needed my doctor’s approval and over a week of antibiotics to make sure an infection doesn’t occur.)

Evidently, when you are on my medication, it can cause dry mouth. Not a huge deal, but your saliva is actually a key player in making sure debris doesn’t hang out in your teeth for too long. (Everything bagel or not, all food needs some help.) No saliva leads to more hidden issues, which leads to more cavities. Or in my case, do not pass go, do not collect $200, get a root canal.

This Thursday, I’ll have my tooth root-canaled (is that a verb?), head into school to run a 1 PM rehearsal, then hopefully get cleared to start my medication again.

By the time I get started again, I’ll have been off my chemo meds for about two weeks. That doesn’t seem like a lot, but even if my tumor hangs out and doesn’t grow in that time, my body already has no idea which way is up or down. Right now, it’s having a full out MTV Spring Break of a time. “No medication?! Awesome! Here’s your energy and appetite back! Go wild!” Next week, I’m anticipating a bit of a challenge as I get acclimated all over again.

I’m trying to think of this as less like a road block and more like a detour. I have a lot of great things to focus on: the astounding progress we’ve made with the DTRF Fundraiser, the great retreat I went on this past weekend, and a musical opening this Friday that I’ve been working on since November. I’ll be honest though: even when I feel Pollyanna about it, I’m still in more pain than I’d like and have developed a borderline addiction to Orajel.

The moral of the story: if you have a diagnosis like mine, even when you brush and floss, expect the unexpected. The detour will arise inevitably. Best advice I’ve got at this point: pack easy-to-chew snacks and have people you like along for the ride.

Uncategorized

#unicornsquad birthday fundraiser!

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My Unicorn Squad shirt is my go-to. It never fails to spark a conversation or a smile!

My birthday is coming up in two weeks. (Thanks Mom for giving me an easy-for-others-to-recall “Cinco de Mayo” birthday! Also, I’m sorry for hanging around for so long when I was due in mid-April.) I’m turning 29, which is not a milestone birthday by any stretch of the imagination, but it’s the most special birthday to me so far because I’m alive. And that means an entirely different, more wonderful thing than it has in years past.

I kindly decline presents or cards, but if you feel inclined and are able, I’d truly appreciate donations to my fundraiser for the Desmoid Tumor Research Foundation.

This post is hard for me. I don’t like asking for things and just writing about this makes me feel vulnerable and a little of self-serving. But the DTRF is the best chance I’ve got for effective treatment and long-term care, since they’re the only organization in the world dedicated to the research of my diagnosis.

The DTRF is a small organization and fundraising is key. Here’s why every dollar counts:

  • There is no FDA recommended treatment for Desmoids.
  • My doctors don’t know how Nexavar, my chemo medication, works.
  • Currently, the most “cutting edge” research is that Nexavar is more effective than a placebo.
  • I believe that with more funding, we can do better than that… and truthfully, I need us to do better than that.

There is no such thing as “only $5.“ Trust me, that’s $5 closer to me keeping several bones and muscles, figuring out a way I can get treated, and even making it possible for me to do a cartwheel again or not get stuck in a hoodie as I try to take it off.

I’ve created a fundraising page where you can make a donation to the DTRF and their annual 5k, Running for Answers. There are so many worthwhile charities and causes out there, but this one in particular has been my lifeline since February. I would love to make sure all patients with this rare diagnosis are served in the same way.

Most importantly: thank you, thank you, thank you for all of your constant kindness and support. Your comments, text messages, and phone calls have proven to me, time and time again, that it’s possible to live an extraordinary life even when your life has been turned upside down by a diagnosis. I am unfathomably lucky.

Click here to donate – and l will do a dance in your honor! (Honest to goodness. Footage available upon request.)