Chapter 35: Honey, I shrunk the ribcage

Someone help me out: I have been having an internal debate over whether it’s “I shrank the ribcage” vs. “I shrunk the ribcage” for about 4 days now as I drafted this post in my head. To all of my former English teachers (here’s looking at you, Mom): I’m sorry if I got it wrong. I’m just copying the famous movie title (I.E. It’s not me, it’s them).

I had 4 days to draft this post in my head because 4 days ago I lay half naked on the radiation oncology treatment table for the 3rd time in less than a week while being gawked at by about 10 brilliant physicians and physicists who told me, yet again, “well, your treatment can’t start because we’re having problems, so you’ll have to wait.”

WAIT. That damned FOUR LETTER word. It really is a dirty word these days. Let me back up so you can see why I am cursing 😉

So, in my last post I wrote about how I was waiting, yet again for radiation to start, after waiting, yet again, for radiation to start after surgery #2, after waiting, yet again for radiation to start because my insurance is a big bunch of poop heads, after waiting, yet again for radiation to start after surgery #1.

Well, fortune would have it that I didn’t start radiation until after Swim Across America (which I’ll tell you all about in just a sec…). The Wednesday after Swim Across America (1 week-ish ago) I went in for the verification test, where basically they did a “dry run” of my radiation treatment without actually delivering the radiation. This was to make sure that all the fancy physics they had spent over a month doing was going to work out for me and they weren’t going to needlessly radiate parts of my body that didn’t deserve it. Only Benedict deserves that.

So I was told that went well and to come back the next day, Thursday the 22nd, for my first treatment. I was PUMPED–like total-kid-on-Christmas-Eve pumped–to say the least. I had practiced holding a very deep breath every day for weeks because that is what I needed to do to ensure that only Benedict–and nothing else–would get fried by the radiation machine. And anyone who knows me knows that I was 180% ready for this.

So I bounced in to Northside on Sept 22 with a huge smile on my face. It was the bell lap of this crazy #adiosbenedict marathon. I put on the cool kimono-like robe they gave me to keep (much more stylish than the awful hospital gowns) and hopped onto the table ready to go. Wooohooo! Life was grand!

So they had me take my big breath and hold, and I was all ready and proud of all the hard work I’d put in (this is not easy to do with 1.5 lungs, 3 missing ribs, rearranged chest muscles and only half a diaphragm), so I did what I would consider an AMAZING breath.

Nothing happened.

We repeated this for 45 minutes, which included the radiation techs coming in and trying to coach me on how to breathe correctly. Out of the goodness of her heart one of them tried to tell me NOT to breathe with my diaphragm and only breathe with my upper chest. One of them asked If I was actually trying.

Cue an incredibly salty and snarky voice in my head screaming back at them “1) YOU KNOW THAT DOESN’T MAKE ANY SENSE ANATOMICALLY RIGHT? YOU CAN’T BREATHE IN THE UPPER CHEST WITHOUT USING THE DIAPHRAGM! 2) DO YOU WHO I AM and WHAT I DO FOR A LIVING? I FREAKING TEACH BREATHING! AND 3) DID YOU NOTICE THAT HALF OF MY CHEST AND ITS MUSCLES ARE MISSING? OF COURSE I AM TRYING!!!”

RARRRRRRRRRRRRR!

Turns out the radiation machine is incredibly smart. It senses when your chest wall reaches a certain circumference via a mixture of about a million infrared lasers and cameras pointed at you, and it absolutely WILL NOT delivery any radiation treatment unless you reach a certain threshold in size AND can hold your breath there for about 30+ seconds. I was not reaching that size. The size we were comparing to was the size of my chest when I held a deep breath during my CT Simulation about 6 weeks ago, just after my 2nd surgery.

The techs explained to me that “WE” were having trouble getting my chest to expand to that size (Excuse me, I’m pretty sure WE are not breathing here, and you’re referring to ME) and that I was unable to have treatment.

So we had to scrub the treatment. My incredibly inflated and excited bubble was literally burst. It burst into a puddle of tears in the dressing room. I was so confused.  I grew from upset to irate because it made NO sense.

I consulted with every neuron in my PT brain (and every neuron in a few friends’ PT brains too) to figure out how on earth I could not have physically performed the right chest expansion as well as I did 4 days after chest wall surgery, after 6 weeks of dedicated practice and PT, and less than a week after I easily swam a mile in a lake (which, by the way, requires a lot of breathing!).

I guess it didn’t make sense to my radiation oncologist, Dr. Williams, either. He was not in the office that day and called me later to profusely apologize for the fumbling and confusion. He reassured me that we would figure it all out 4 days later when he was back in the office on Monday.

So with a breath of relief I showed up on Monday, still somewhat shaken from my dramatic attempt at radiation, and pretty nervous.

But you better believe I spent every spare minute of the 4 days in between attempt #1 and attempt #2 kicking some major @$$ at breathing like a champ. You tell me I’m not good enough? I’ll show YOU.

So again I’m half naked on the table (something I’ll be enjoying for the next 6 weeks) and this time the entire team–radiation techs, therapists, physicians, physicists, nurses– was in there watching me take the world’s best big breaths. This brings us back to the beginning of this blog post.

Dr. Williams watched me breathe and turned to his team and said “What’s wrong with that? That was perfect!” then got into conversation with the super smart therapists and physics people (side note-I’m so glad that someone did well enough in physics, unlike me, to be able to design radiation treatments for a living) and they determined that despite my “perfect” efforts and appearance, it still was not reaching the threshold to get the machine to turn on. And there was no way to override the machine because that would mean they could harm me.

No thanks, I’m not interested in harming anything but Benedict.

But they all agreed there was NO WAY it was physically possible that I was not breathing as big or as well as I did 4 days post-op. Until Dr. Williams took a look at me and called some of his partners over and started pointing at my chest. He said “WAIT. You had a LOT of swelling here before, and now you don’t.” I said “Yep, I got rid of it all because my PTs are awesome.” There was a collective “Ohhhhhhhhhhhhhhhhhhhhhhhhh” among all the smart physics people in the room. It was that simple: my chest circumference was literally a different size because of swelling. I’d shrunken since my post-op scan on August 16.

Duh. So there you have it–Honey, I shrunk (isn’t it shrank!?!?! this grammar thing is killing me today!) the ribcage.

Dr. Williams saw me today and said “Wow! You lost a lot of weight! Specifically right there (pointing to my upper chest and armpit)!” Ha ha.

So they redid another CT Simulation on Monday, proved that I did indeed shrink and no longer have swelling, and then fast-tracked my treatment planning to ensure I could start ASAP. This time I only had to wait 3 days!

That means………………..I’m SO EXCITED TO SAY that TREATMENT 1 is IN THE BOOKS! PEACE OUT BENEDICT!

I have 27 more treatments (28 total) to go. I go every day to Northside for radiation. Today wasn’t without its minor drama though. The first breath hold was pretty long and hard but it definitely got easier as I went. I’ve found that singing to myself 99 bottles of beer on the wall is helpful. It gives me a benchmark to know how long I’ve been holding and how much more I need to hold, but I’m not just counting seconds, which is much more agonizing when you feel like your eyes are going to pop out and the world starts to go a little dark from breath holding.

That song is in your head now, isn’t it? You’re welcome. And as a bonus, you can sing it every day at 1:40 PM and help me out in spirit!

In other drama, because again, no first day of treatment is allowed to just be uneventful and smooth for me-I also ended up with a parking ticket on my car for parking in the parking spots specifically designated to radiation oncology patients. I had my permit displayed on my dashboard as instructed, and the security guard even double checked with me as I exited my car to make sure I had it. This time there was no crying or salty conversations in my head. I promptly called the security office and told them what i thought of the parking ticket that has now left that horrible sticky residue all over my driver’s window (Yep, one of THOSE parking tickets). WTF NORTHSIDE?!?!?! GET IT TOGETHER! You’ve been so good to me up until now!

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If all goes according to plan then I will finish radiation on November 7. But we know that nothing in this entire journey has gone according to anyone’s plan, so I’m just going to say that I’m going to be done in November-ish. Just in time for my birthday! After that I will have a few more weeks of being on a blood thinner and then there will be a BIG PARTY!

Speaking of big party…

As promised, I figured I’d save the best part for last on this post.

On September 16-17 I participated in the much anticipated Swim Across America event here in Atlanta. I still cannot put into many words just what that event meant to me, how proud I am of our organizing committee and the junior advisory board, how proud I am of myself, how exciting it was to meet the Olympians who joined us (including having dinner with Missy Franklin! OMG!), the incredible experience of touring the AFLAC Cancer Center at Egleston and hearing their stories, hearing the amazing survival stories of others battling or formerly battling cancer at the SAA event, participating in a swim clinic with Olympians, raising $5000 towards our total Atlanta fundraising amount of over $400,000, and being given a literal platform upon which to share my story with the group and give a voice to so many who have fought cancer and both won and lost.

My heart continues to burst, and I continue to “suffer” from the Swim Across America hangover. It was an amazing experience. I was pretty darn nervous for the swim itself despite all the visualization and meditation I had done to keep my mind calm and focused. I was just 37 days post-op from surgery #2 and had really not been feeling super well physically for about the 1.5 weeks leading up to the swim. I was exhausted all the time, felt like I’d been hit by a train, for really no discernable reason. I showed up to the event on Saturday morning and was nervous but also calm–I figured that just like both surgeriees, a year of illness, and just like everything else I’d been through, I’d figure out a way to get the job done, even if it wasn’t perfect or pretty. And I did. I hopped into the lake alongside longtime Duke swimming pal Julia and got in the zone.

The one thing that’s nice about swimming in a lake is how murky and dark it is. Most people find that disconcerting (and don’t get me wrong, it would be more ideal to see where I was swimming at all times). However, in my case, especially this time around, it was the exact sensory calming thing that I needed. I couldn’t see anyone else, I couldn’t see the shore except for when I lifted my eyes to sight where I was going. I just focused on my breathing (still not physically easy for me), staying incredibly calm and relaxed, and thinking only about why I was swimming in the first place. The half mile/halfway point came quicker than I imagined, and I stopped to float for a bit and look back over the course and just take it in. I was pleased to feel that I didn’t really even NEED the rest break, but glad that I gave myself the opportunity to stop and reflect on the entire experience that got me to that point. It was also confidence-boosting to know that if I made it halfway with a smile on my face, there was no doubt I could finish that swim without a hitch.

And I did! Julia finished WAY before me (because she is just that awesome) but hopped back into the lake to cross the finish line with me. It was a very meaningful moment.

I can’t wait for next year!

I was fortunate to have been able to share my Swim Across America story in a few places. I gave a speech at the event called “Why I Swim” just before my 1 mile swim. You can read it here (and read more of an account of my experience with SAA) or watch it here:

The Gwinnett Daily Post and Will Hammock did an amazing sports feature story on me 2 days before the event which you can read here (and below is one of the photos from the article).julie saa4.jpeg

 

Atlanta Intown Paper did a feature story on me in June. Read it here.

And the Gainesville Times covered the event and picked some pretty awesome quotes from my speech to highlight in their article here. They snappedthis awesome photo of me at the finish:

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I think the swim itself was a great metaphor to all that I have been through, and all that many many others go through as well. I hope that MANY of you reading will join Team #TakeThatBenedict next year (yes, I already picked a team name) and come swim with me. Believe me, if I can do it 37 days after surgery, you can too! You better believe that if you have any swimming experience I WILL BE HARASSING YOU. So you may as well start training now. 😉

1 radiation treatment down, 27 to go!

I’ll update along the way of radiation treatments. I’m currently taking suggestions for what to name the radiation machine because “radiation machine” is wordy. Since I named Benedict after the traitor Benedict Arnold, I’m thinking maybe one of Benedict Arnold’s nemesis….nemeses? nemesises? Oh man, it’s a struggle today. And sorry, Coach King, but I absolutely do not remember what would be the most appropriate name for Benedict Arnold’s nemesis. George Washington? (!?!?!)

Below is the official uniform of Team #TakeThatBenedict. Pilates Reformer not required:

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And lastly, speaking of Pilates (and the studio pictured above, The Daily), I will be teaching a charity Pilates class at the Daily once a month to benefit a cancer charity that is near and dear to me. Last month I raised nearly $300 for Swim Across America. On October 15, November 19, and December 10 I will teach at 11:30 AM to benefit The Lauren Beam Foundation. This foundation provides financial assistance to young, active and athletic adults undergoing cancer treatment and was formed in memory of fellow swimmer and coach Lauren Beam who lost her battle with stage IV colon cancer in her early 30’s. I received generous financial assistance from this foundation to help out with many of my medical expenses and I am so excited to give back to them! Come join me at the Daily!