Chapter 32: The Waiting Game, Part 3

If you’re like me you probably thought I was all finished with the Waiting Game. I mean, we’ve had  Part 1 and Part 2 already. But true to form, Benedict’s little journey to doom has been anything but straightforward and simple. I think he’s in cahoots with my insurance company and now he’s trying to get revenge from me totally kicking his butt to the curb 2 months ago. Well, most of his butt, that is. He’s a stubborn fellow, as we know, so it’s only fitting he would conspire with the Stubborn Insurance Giant and delay his demise even more.

So as I mentioned previously, after surgery there was still a microscopic sliver of Benedict hanging on for dear life to the nerves in my neck and shoulder (the brachial plexus). This was not resectable with surgery unless we wanted to risk making my shoulder and arm useless. But since everyone on my medical team, myself included, is a perfectionist and/or recovering perfectionist, we’ve all concluded having a useless arm is not really an option and I’m not allowed to move forward with anything too exciting in life until he’s 100 percent demolished, disintegrated, peaced out…and gone for good.

So for that reason we have had a lot of appointments and filled out lots of paperwork to figure out what is next. Back in early June Dr. D’Amato and Dr. Moore recommended I pursue proton radiation therapy due to the proximity of Slivered Benedict to sensitive tissues (blood vessels, nerves, my spinal cord, to name a few). That was really (not) great news, because as luck would(n’t) have it, there is not a proton radiation treatment center here in good old humongous Hotlanta. Small town Shreveport? Yep. Knoxville? Oh yes. But Atlanta? Not until 2017 at a pretty cool institution called Emory. Come on Emory, build your particle accelerator faster!

Anywho, after seeing a local radiation oncologist here (Dr. Williams at Northside) and talking with some friends who happen to know a lot about radiation oncology (shout out to friend Becca and her awesomely smart Dad!), it was recommended that I pursue proton radiation at a center with radiation oncologists who specialize in sarcoma. So that narrowed it down to Boston (MGH) and Houston (MD Anderson).

With all due respect to anyone reading who lives in Houston–your town was out of the question as soon as it came out of the doctor’s mouth. If I was to have radiation in the dead middle of summer AND have to live there for 1-2 months, there was really no question. That and I lived in Houston for 3 months back in PT school for an internship and I feel like I’ve had my fill. The opportunity to live in Boston (IMHO, one of the greatest towns on the planet except maybe in January-February) was completely alluring to me.

So I contacted the MGH team and got the ball rolling. A month ago. I had to go on a wild goose chase and round up every scan I’ve had in the last year–which comes out to about half a million–and every physician note, hospital record, lab test, blog post, grocery list, tax form…whew. Just kidding on those last few things, but they seriously did want to know everything there was to know about me. I learned that just to get my foot into the door my records had to get accepted by the medical director, followed by all the people in Rounds #1, followed by all the people in Rounds #2 , then it had to get approved by my insurance. This is an Ivy League hospital after all (for a little school called Harvard, for anyone wondering). They are choosy with their students and apparently their patients, too. I prayed I would make the cut.

So about 3 weeks later (end of June) I finally heard back and learned I was accepted to the program and that my insurance initially denied the authorization for proton therapy because it is “experimental” for my diagnosis. I’ve heard this before (see previous blog about my PET scan being denied for the same reason). So what did I do? Turn to twitter, naturally. Because that’s the only way to get anyone to listen to me these days. My snarky tweet earned an immediate response, followed by an email. I spent an entire Friday evening writing a literal dissertation on exactly why proton therapy is not experimental. I presented about 7 research articles and a cost-benefit analysis to them. Seriously, maybe I need to work for an insurance company.

This past Tuesday I heard from the MGH Proton Therapy Center medical director who told me they were filing an appeal and I would likely have to go through a few more sets of denials/appeals before Aetna finally gets their act together. Because that’s efficient, right? She also recommended that because Aetna is taking so long and it is going to be a longer time between surgery and radiation than what is recommended for most patients, that I begin chemo again to bridge the gap between surgery and radiation. Talk about a letdown. Fortunately this time the light at the end of the tunnel is still there and it will hopefully not be too long on the chemo.

Radiation will last a total of 9.5 weeks. We don’t have a date or timeline yet since we can’t schedule until insurance approves. I mean life’s already kind of on hold for me, what’s a few more months? On the bright side–now that I’m feeling better it means lots of play time!

Soooo…that’s where we are on the “what’s next?” question.

As for the “how are you feeling?” question–great! Yesterday marked 8 weeks post-op and I’ve been able to return to Pilates and swimming. Swimming is not easy by any means and it feels somewhere between a sinking tugboat and a suffocating dolphin, but there is forward propulsion in the water happening. I’ll take it! It’s just nice to be back in the water.

My awesome medical team is pretty amazed at my progress (so am I) and I just have to brag on them a little bit too. I shared this on instagram about a week ago, but I’m so proud that every single member of my team who has played a big role in #takethatbenedict was voted into Atlanta’s Top Doctors for 2016! Dr. Moore (thoracic surgeon), Dr. D’Amato (oncology), Dr. Mackay (plastic surgeon), Dr. Williams (radiation oncology), Dr. Golusinski (primary care), Dr. Sheerin (Allergy & Asthma). So cool right? I mean, I knew they were awesome all along, but I’m glad the rest of the Atlanta medical community finally agrees with me.

So not much else is going on around here as I continue to become the master of the waiting game. Daniel is back to work, I’m pretty much feeling back to normal. I’m not working since I could be headed north any day now, but I’m filling my time with plenty of important things. And naps (which ARE important things). Time to continue to hurry up and wait! Maybe 3rd time is a charm, eh?

Hope everyone had a happy 4th!