Chapter 34: The Waiting Game, Part 4 and #makingwavestofightcancer with SAA

seed swim

You read that right. Third time was not a charm as I once wrote. It’s another waiting game. Except this time I’ve just given up on thinking about what I’m waiting on–so much so that I keep forgetting I’m even waiting on anything.

What are we waiting on again?

Oh yeah, that’s right.


Remember that time I wrote about waiting on radiation 2 months ago? And then wrote a little more on it in my last post? We’re still waiting.

Thanks to a few more twists in the plot–because God forbid this get even the slightest bit boring–I had surgery to remove both of my titanium struts on Thursday, August 11. What was really fun was that I found out I was having surgery less than 24 hours before that. At least THAT time they didn’t keep me waiting!!

Surgery was about as smooth as could be. It took an hour, I was in recovery for 2 hours, then went back home and never quite felt like I got kicked down like the marathon surgery #1 I had this year. So that was good. They ended up removing not only my broken strut but also the intact one. The medical supply reps were in the surgery and reasoned that since I did the “impossible” and broke one, I was likely to break the other. Finally, people are catching on to my tendency to be the exception to most rules.

So now I have a sunken upper chest that is officially ribless and collarboneless, covered only with skin and muscle. There’s nothing under it either since they removed my lung. Well, except for this little thing called my heart, which I can now feel beating quite clearly. It’s definitely creepy (the being able to feel it part, not the heart beating part. That part is great!)

Dr. Moore gave me the green light to “return to normal” within 2 weeks after surgery, so I counted down the days to return to the pool. In the meantime I did my radiation CT simulation (the one that we originally postponed) about 5 days after surgery, and they told me we would start radiation by August 29.

I was SO EXCITED! Who gets excited about radiation? This girl. The light was at the end of the tunnel–I could see it, taste it–especially because it tasted deliciously chemo-free. Starting radiation would mean the END of chemo! For realskies this time.

But as things have seemed to go, I really should have known better than to believe them.

3 days later Dr. Williams-my awesome and very thorough radiation oncologist-called and said they wanted to redo my CT Simulation. Surgery twice: check. Radiation testing twice: check. It turns out after the first test, they realized that the plan that had recommended by my “team” in Boston (the team I never got to meet) was going to cause an enormous amount of lung damage. So they wanted to re-scan me and see just how much damage they could potentially cause.

This is the thing about cancer treatment. Many of the therapies are designed to get rid of nasty cancer tissue. Yay cancer therapy! But they also get rid of happy, healthy, innocent tissue that just happens to be in the wrong place at the wrong time. Boo cancer therapy!

So Dr. Williams, in considering that I’m a pretty active person (i.e. one who breaks titanium struts) who is, in fact, an exception to most rules, was concerned that causing irreparable lung damage would sincerely affect my ability to swim and do other active fun things I like to do. I was told something along the lines of “If you were a couch potato with no aspirations to exercise or be a physical therapist for the rest of your life, we’d just go ahead and fry your lung.” I always knew there was a reason I exercised beyond–oh I don’t know–all the other million health benefits that exercise has to offer. Those 4 AM swim practice wake up calls DO pay off! Now I can hopefully add Fried Lung Prevention to the reasons for that!

So after that scan, they made this cool colorful video of all my CT scans from the last year (all 1000 of them) embedded on each other and opened a big debate. My case got presented at the Thoracic Oncology rounds on August 23 for about the billionth time–Great news! My career as a case study continues to blossom!– and a bunch of brilliant minds, including my entire award winning care team–put their heads together to see if they could figure out how to prevent torching my remaining lung tissue.

The original plan from MGH was to do radiation to all of the original tumor bed and all of its the margins (remember way back when my tumor took up 10-11 cm of diameter space in my chest?) PLUS the residual disease that remained. But the problem there was that MGH was going to use proton beam radiation, a far more precise and less tissue-frying treatment option. Here in Hotlanta, the magical radiation equipment isn’t quite as precise, so there would be potential for much more damage. This was the whole reason we had a major insurance battle in the first place.

In addition, since Dr. Moore was able to get almost completely clear surgical margins (IE the tissue that he took out surrounding the tissue appeared to be healthy and cancer free), it was not believed that I necessarily needed the extent of radiation once recommended by the MGH team. But they wanted to be sure, so they held a meeting about it. The determination from rounds was to only do radiation to my remaining tumor (near where the front of my chest and my neck meet–where I no longer have a collarbone) in addition to some tissue along the right side of my breastbone (mediastinum) where there is some debate as to whether the tumor originally invaded nearby tissue or not. This would mean straying from the “traditional” plan of always doing radiation to not only the original but also the remaining tumor bed but also cutting down the amount of radiation area and total treatment I’d be getting. Sounded like a GREAT idea to me!

But there was still a bit of a hangup–Dr. Williams wanted to run the plan by the MGH team to be absolutely sure it was what all the experts agreed upon.

So that’s what I’m waiting on–everyone to get on board, and then develop my treatment plan once they’re on board.

In the meantime I have managed to find a way to get back in the pool despite these cool clear stickers they put on me to help cover up the marks that they drew on me to help them eventually line up the radiation equipment. They aren’t waterproof and I was told not to submerge them in water, but Daniel and I have gotten really good at finding ways to waterproof them and/or re-draw the marks with our trusty friend The Magic Marker. For you rule followers out there, don’t worry, I ran this plan by the radiation team first. As my plastic surgeon said last week “You’re going to swim whether we want you to or not, regardless of the fact that you are 2 weeks post-chest surgery. We may as well just embrace it and make it work for you.” He couldn’t be more right! So I’m armed with Sharpies and waterproof dressings in the meantime!

To get me moving, we took a little voyage up to Lake Seed in the beautiful north Georgia mountains and I got in some paddleboarding and FINALLY an open water swim. I’ve been trying to swim in open water all summer but a few little bumps called surgery kept getting in the way. Swim Across America-Atlanta is TWO WEEKS from tomorrow and I have been hoping since February to be able to participate in the 1 mile swim at Lake Lanier on September 17. I think I’m going to be able to pull it off–by the skin of my teeth–but I’m going to give it my best shot and thankfully will have my own personal support team!

I have been so unbelievably honored to participate in this swim, volunteer on the planning committee and serve as an advisor to our SAA Junior Advisory Board. Moreover, I am SO humbled and grateful with all of the support I’ve received so far towards my own swim. It’s hard to believe I’ve been able to raise over $2700 toward my goal of $3000. All of the proceeds from Swim Across America-Atlanta go directly towards pediatric leukemia research at the AFLAC Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta. It’s also Pediatric Cancer Awareness Month in September, so what better time to raise money and awareness for our hometown pediatric cancer center? Given that I have a rare pediatric cancer–this cause is near and dear to me–especially as only 2% of all funds donated toward cancer research to the National Institutes of Health go toward pediatric cancer. TWO. PERCENT. Add that to sarcoma (my cancer type) being only 1% and 15% of adult and pediatric cancers, respectively, and also being poorly funded–and you better believe I’m on a mission to raise those percentages.


To support Swim Across America, the AFLAC Cancer & Blood Disorders Center, Pediatric Cancer Reserach and my **hopeful** swim, you can visit this link here below! Help me reach my fundraising goal! I’m almost there!

Support my swim with Swim Across America-Atlanta!

Hopefully the next post I write will be all about how I’ve started radiation and how I totally dominated that 1 mile swim. Either way I’ll be #makingwavestofightcancer, whether for kids with leukemia or for my own radiation treatment. Stay tuned!