Tie Dye Love

TieIt’s been 3 years since I made that life changing trip to the ER. This was something that especially stood out to me as I stared at the clown fish mural on the wall of one of the pediatric emergency room bays recently. I remember staring at that same cartoon sea creature painting 3 years ago when I was receiving some painful, devastating news. “Dad…this is THE room”, I pointed out to him as we both blinked our bleary eyes. However, that memory is not the only thing coming up on an anniversary. On a more exciting and cheerful note, the 4Nathalie Tie Dye Event is about to take place this weekend, Saturday May 2nd!

After a pretty crushing blow that turned out to be cancer, there wasn’t a whole lot that could really and truly cheer me up. I didn’t know that such a fun and light hearted event could be possible, but the first 4Nathalie tie-dye held in a garage was exactly that!  An undeniable feeling of hope was in the air that I couldn’t ignore.  But this year, I’m really HOPING that the tie dye can be more than just an incredibly fun event, though. This year it means a little more.

Being diagnosed with cancer is never, ever, an easy process. But the thing that pushed the dial from ‘hard’ to ‘devastating’ for my family was the specific type of cancer diagnosis. I pretty much always end up explaining ASPS as 1% of sarcomas, which occur 1% of the time in all cancers. To say that it’s rare is kind of an understatement. After clarifying that the biopsy matched ASPS, our old oncologist proceeded to list all the different cancer treatments in existence, then explained why each and every one of them didn’t work for my cancer until we were left with none.  It was a tough appointment, but after the initial feeling of helplessness, my mom and dad started researching every possibility under the sun. I couldn’t be more grateful that they did that, because they’re the reason I’m even having a 3 year anniversary.

However, the tough truth is that there really isn’t much for ASPS, whether it’s in terms of funding, research, or treatments. Because ASPS is so rare, there isn’t a clear survival rate percentage. Some people get lucky, and some…don’t. Even though I’m pretty biased, I believe that just because something’s rare doesn’t mean it doesn’t deserve attention. Focusing on all different types of cancers will only just get us one step closer to curing it overall.

Back when I was first given my diagnosis, my family connected online with another girl 2 years older than me in Seattle who also had ASPS. Even though we never got to meet each other in person, we both felt almost like sisters, sharing a bond as we went through the roller coaster that is ASPS together. From what I knew about her, she sounded like a girl I’d aspire to be. She fought courageously for 7 YEARS, always with a beautiful smile, positive outlook, and a heart filled with faith for the Lord. Unfortunately, she went to join him too early in April last year. It wasn’t because she didn’t have enough strength or hope. It was because there weren’t enough effective options available for her at the time. I don’t like the phrase “lost their battle” when talking about fighting cancer because it implies that the situation was in their control, which it obviously isn’t for so many.

Karina is still really hard for me to talk about, because I find myself questioning why certain things happen and why they’re so unfair. However, she has inspired me to work as hard as I can to raise both awareness and funding for ASPS. She’s the definition of a fighter, and in her honor I’d like to try and make stories like hers more and more scarce. I can only hope that sharing her story and mine will in turn inspire anyone reading this to be more passionate about finding solutions for ASPS.

Like my dad has mentioned, we’ve finally found something promising to get behind. Dr, Kevin Jones is leading an ASPS targeted study, but it won’t happen without a little help. We’re planning to send the proceeds from the tie dye event his way. As much as I love interacting with people in person, not everyone can make it to the event. And that’s okay, because if you’re interested in lending a hand to us,  a friend is hard at work setting up a donation page on the 4Nathalie website.

I’m really excited for this weekend. Tie dye can do more than you think.


These battle scars, don’t look like they’re fading,

Don’t look like they’re ever going away

They ain’t never gonna change

These battle… -Lupe Fiasco, “Battle Scars”

When I first got diagnosed with cancer, I heard that “you never come out of the battle unscarred.” I definitely believe this is true. Not just in terms of physical ones, but emotional ones as well. But most importantly, they don’t have to be your own personal burden to bear.  Back then, I had never considered the possibility that scars don’t necessarily have to be bad things. Scars can be signs of change, strength, or memories. I now look back and remember the first scar that seemed like a huge deal to me.

When I was in 8th grade, I traveled to Bethesda, Maryland to NIH (National Institutes Of Health) for a surgery that would save my life and most certainly change it, for better or for worse. It was a risky thoracic operation that had sent many surgeons here in Portland running away with their tails tucked between their legs at the mere thought of it. I was lucky enough to come across someone during a clinical trial who had both the courage and kindness to attempt something so maverick.

The night before it happened was filled with fear and uncertainty. Though the surgeon had agreed to try his best, I had gone through a few surgeries at that point. I knew there were no guarantees in the operating room. After about 12 hours in the OR, I miraculously emerged out alive. Sure, I was on a ventilator and had 6 chest tubes, but hey! I wasn’t going to be focusing on those small details in contrast to the enormity of the situation. I made the best of it, gradually shedding tubes as I recovered and explored all over the enormous campus. One of my favorite places to go was Au Bon  Pain, a delicious coffee shop and bakery, that my dad liked to joke was an “au bon pain in his wallet!”

However, when the immediate crisis started to pass, I was finally aware of more trivial matters. Case in point: the startling appearance of the sizable incision running down the middle of my chest. Though it’s not like I refused to wear anything but turtlenecks, I was still definitely more self conscious and aware of myself. Cancer isn’t something that you can see from the outside, but once it affects your appearance (such as losing your hair), all patients say the reality of the situation becomes harder and more believable. It was and still is a major deal to me, but not in the way that it used to be.

The truth is, outward scars fade. I’m now confident enough to wear anything I want to. But inner ones don’t always fade. This may seem like a bad thing when it comes to tough or scary experiences, but the scar doesn’t have to be the particular memory that goes along with it. It can be whatever you take from the experience, and most people are more in control of that then they think. Although my surgery at NIH was scary and hard, I learned a lot from the month I spent recovering there.

My family and I were able to meet amazing people in similar situations smiling in the face of hardship. Though everyone there was dealing with something equally sucky, they didn’t let it affect their outlook. We shared groceries on the clinical center’s trips to the unfamiliar East coast supermarkets. We helped and connected with others that were facing some of the exact challenges we were. And just like that, a person who was previously a stranger becomes a friendly face. Someone to pray with or pray for. Someone to commiserate with. Someone who knows. There’s a special bond that you share with someone when you go through the same things. It can be as simple as relating to the annoyances caused by little sisters, 🙂 the difficulty of a challenge problem on a math test, or just how unfair your soccer coach is being when he assigns yet another set of G.I. Joes. Being able to really, truly know what it’s like creates something that the two of you share, and it’s amazing how much closer that can bring you to someone. I believe this is especially true for cancer patients, a point that I discussed in my earlier post about Camp Ukandu. DCHfriends

So now, after learning this important lesson, if someone were to ask me if I regretted my time at NIH…I could honestly say no. The time there gave me an enormous gift. Besides the obvious of saving my life, it taught me the importance of connecting with others. There really isn’t a need to suffer alone. You’d be surprised how much bearable your problems become after being able to share an experience with someone. Because of this, instead of holing up in my room at Doernbecher 10 South, I go out to to the common areas to meet other patients, especially those who are the same age. I try to do this even when I’m having a not so great day, because otherwise I’d be missing out on so many relationships. I’m forever grateful for this scar. The picture above is living proof.