Chapter 22: Duke, ADPi, and Sarcoma. It’s a hodge podge post.


‘Tis the season for all wonderful things Duke. Basketball season is in full swing as Duke goes head to head with ACC foes for the remainder of the season. I’d really rather not discuss Duke’s last 2 appearances beyond saying hats off to the Tigers and the Irish. Come on Devils, at least pretend like you won a national championship last year?

More excitingly, it’s SWIM SEASON and I have the privilege of watching my team crush it locally here in Atlanta not once but twice this year. In case you don’t follow swimming other than every 4 years to find out what kind of new antics Michael is up to and see him come, once again, out of retirement, then you probably find this paragraph boring. But what’s really exciting is that the Duke Women’s Swim & Dive team is fully funded for the first time in program history. This means that they can attract not only the brightest and smartest swimmers in the country (duh, that was already a given), but also the fastest. They’ve flirted with Top 25 rankings all season and most awesomely nearly beat rival UNC in an invitational meet (this means big championship meet) in November. To me, that’s like the tortoise beating the hare, or David finally beating up on Goliath. In my lifetime I’ve never seen Duke even come close to beating UNC. So coming close is basically a win in my book. Watch out, Tarheels.

Anyway, enough of that. I spent the weekend reliving my swim days by catching up with the DSDT coaching staff, local fellow swim alums, and watching Duke compete against ACC foe Georgia Tech and Big Ten teams Michigan and Indiana–both of whom are ranked pretty high. Duke held their own and it was really exciting to see just how far they’ve come…minus the FOUR heats each of the 1000 and 500 free. I’ve determined that sitting at a swim meet is actually more tiring than competing in the meet. Can’t wait to see how they do at the ACC Championship AND when they return to Atlanta for the NCAA Championship in March! Given that it is an Olympic year, that means big things for the NCAA meet. You better believe I’ll be buying tickets when they go on sale tomorrow.

So what about Benedict? Since my frequently asked questions/cliff notes post-not much has changed. No news is good news I suppose! I saw Dr. D’Amato last week and the visit was uneventful. This is a good thing at the oncologist. She told me I was too healthy to be there. This is a good thing at the oncologist. So I no longer have to see her monthly. This is a good thing at the oncologist. I go for labs next month just to keep an eye on all my counts, then it’s picture day again in March (I can’t believe I already scheduled that-whaaaaat!?).I already have my fancy berry smoothie barium cocktail chilling in my fridge for March 7. Don’t act like you’re not jealous.

After picture day we’ll revisit the “what’s next?” discussion a few days later after we see the results. “What’s next” could mean anything: keep on keepin’ on with the crizotinib, or pack up my things and get ready for surgery. Or radiation. Who knows? No point in worrying over that right now–just gotta keep rolling with it.

I was struck deep in my core reading about a fellow ADPi sister who lost her brave fight with sarcoma yesterday morning, January 16. Thanks to sister Sara Portwood for sharing her story. Erin Levitas was 22 and just graduated with honors from Wake Forest. She was diagnosed with an extremely rare (just as rare as mine) sarcoma last March and fought an extremely courageous fight with a smile on her face amidst the struggle. I found myself feeling angry, sick, and repulsed when reading her story, begging and pleading with the universe to “not let the ending turn out the way I knew it would” as I binge read her entire blog from start to finish last night. She posted pictures of herself and her friends/family proudly wearing yellow in honor of sarcoma awareness, and I can’t help but feel such a connection to her not only as a sorority sister but also as a sarcoma sister. I can’t even imagine the pain her family is experiencing and feel so lucky to be going down the path that I am. I’m in a very different boat than Erin was, but I found myself nodding vehemently and smiling at many of the same cancer jokes she and I both have made in our blogs.

Sarcomas—ESPECIALLY the rare ones—are so poorly understood. In fact, I just did a little literature review tonight (because let’s be honest, what is sexier to do on a Sunday night than scour PubMed for the latest and greatest on inflammatory myofibroblastic tumor?) and seriously–there is really not much out there that is current. In fact, there are still some schools of thought saying IMT is not a sarcoma and is not a cancer. Others say it is. Whether it is or it isn’t, it is rare and poorly studied. There are no protocols for how to treat it. Erin’s tumor was so rare too she had to go to 3 different amazing cancer hospitals to get a definitive diagnosis (Johns Hopkins, Dana Farber, and Sloan Kettering). And from what it sounds-even then they still didn’t quite have the right algorithm to treat her. A lot of it was trial and error, guess and check (you know, everyone’s favorite game to play with their health!) We’re playing that game with me and so far, fortunately, it looks like our trials and guesses are working my favor. This is a good thing at the oncologist.

Sorry I’m not sorry, Benedict.

So just do me a favor and put Erin and her family in your thoughts in honor and memory of all those fighting with sarcoma and other rare and poorly understood cancers out there. Visit the Sarcoma Alliance page to get a green and yellow wristband, make a donation, or just learn a little bit more about sarcoma.

And as I keep begging each and every one of you–please, please PLEASE don’t take anything for granted. Don’t sweat the small stuff–and if you do, it better be only because you’re actually sweating and doing something active that you truly love. When you find yourself stressing over meaningless drama, stop for even just a millisecond and promise yourself that you’ll just let it go. Kid President says “throw kindness around like confetti.” Brene Brown says “Everyone is just doing the best they can.” All of life’s drama is actually a blessing–reminders that we are alive and fortunate to have small stuff to sweat about. So when your friend, coworker or family member is driving you crazy–take a moment to breathe and remember that we are all just doing the best we can, and we’re thankful to feel the way we feel because it just means that we are alive.

And in the great words of Dr. King in honor of tomorrow, his day:

But there is something that I must say to my people, who stand on the warm threshold which leads into the palace of justice: In the process of gaining our rightful place, we must not be guilty of wrongful deeds. Let us not seek to satisfy our thirst for freedom by drinking from the cup of bitterness and hatred. We must forever conduct our struggle on the high plane of dignity and discipline. We must not allow our creative protest to degenerate into physical violence. Again and again, we must rise to the majestic heights of meeting physical force with soul force.

Rest in peace, Erin. Your fight isn’t over. I’ll continue to fight your fight as part of my own. We live for each other.

Kicking ass and taking names in Chapter 23