Chapter 21: Blowing out the Candles

Well, it’s about that time.

Today I celebrate another year of life and tomorrow I will welcome in the next year. This time a year ago I was in Blue Ridge at our cabin with good friends and celebrating what then seemed a tumultuous year of age 30. I didn’t know what I was in for, let alone that I would have the strength and perseverance to put up with it all.

Life lesson: you really never know what is about to hit you, so be grateful for the relatively easy life you have and don’t sweat the small stuff. No really- I beg you-don’t sweat the small stuff. You know you do it. We all do. But we can overcome that AND BONUS-you don’t need a crazy life changing event to help you see that! Perhaps the next time you find yourself freaking out about the length of the Starbucks line or that coworker who drives you crazy, instead stop and reflect on how blessed you are to ONLY have small stuff to be sweating about!

Fortunately I don’t have to write much about the past year in this post because I’ve already done that in this whole blog series. Journaling is a wonderful thing. I keep a private journal for myself. If you’ve been a faithful reader then you are aware I may divulge some things in quite a bit of detail, but believe me, you don’t want to know everything that goes on in this head. It’s enlightening to look back and see just how far I’ve come. If you don’t keep a journal, I highly recommend it. Sometimes you just need to physically write things out and they will sort themselves out on the paper. We all get a little stuck sometimes.

I know for certain that 32 is going to be a breeze. I had dinner with a good friend/colleague this week who asked me how hard it was to deal with all of the unknowns and scary things surrounding my health this year. I hadn’t really stopped to reflect on that until she asked. To be honest—and I’m really not downplaying the truth—it’s almost hard to remember any struggle. Sure, there were some very tough and dark times, but now I can totally understand some of the advice I’d been given by old friends: “If you’ve survived some of the toughest swim workouts, you can survive this.”

It’s SOOOOOOOO true!

Sure, those workouts are only temporary and living with cancer and all of its unknowns lasts a lot longer than 14 X 400’s IM. Thank you, Ed Spencer, for giving me a benchmark from which to judge all tough things in life. This is not a swim workout, but it takes the same type of grit and determination that get me through both. Just take it stroke by stroke, day by day, and do your best. Even all of the pain of cancer treatment is temporary. I’m thankful to have that experience to fall back upon.

On that note, I’m reading an incredible book, inspired by an incredible swimmer I met a few weeks ago. I had watched Diana Nyad’s TED talk and sent a message to my friend Alexis (a fellow marathon swimmer) asking if she had seen the TED talk. I had to share because it was, in fact, AMAZING—and something I needed to hear on an evening I was having a particular struggle with inspiration and motivation. Alexis replied that yes, she had just listened to it and oh-by-the-way Diana was going to be in Atlanta in 5 days on her book tour for her newly released book, Find a Way. She invited me to join her. Duhhhh. In the flash of about 20 seconds and a quick credit card transaction, I had tickets. I could go on for hours about the amazingness of Diana’s talk, but I’ll spare you my endless banter and direct you to her TED talk (a good summary of the longer speech she gave at the book signing). If you prefer inspiration of the literary variety—here is her book.

You absolutely do not need to know anything about swimming to want to read the book or watch the talk. But if you’ve been wondering about some of the thoughts and feelings I’ve been experiencing throughout this journey-then go check out Diana’s stuff. There are some parallels!

I had the honor of speaking with Diana after her talk as she autographed my book with her famous homage to Winston Churchill: “Julie-never, ever give up.” It’s funny when you meet someone you admire and you know you only have a few minutes to make an impression that’s meaningful to you without getting lost in nervousness.

As you may have learned from reading this blog, you probably have figured out I’m not a huge fan of using Benedict to my advantage, or “pulling the cancer card” so to speak. I don’t think that I’m special or unique just because of my little journey or that I deserve inordinate amounts of attention because of it. Many people have struggles that are much worse than mine, and I have arguably been through times in my life that are much more challenging (albeit more trivial from a life-or-death standpoint, but challenging nonetheless). But this time, it just made sense to me to bring up Benedict as the reason I watched her TED talk several days before. That night I was in a moment of struggle when Benedict was trying to take over my mind and her talk happened to pull me out of it.

So I told her my little story about how fortuitous it was that her talk happened to come across my facebook feed that evening and how I learned that she would be in Atlanta just a few days later. She listened to the brief version of my Benedict saga (how do you make a 16+ year saga “brief” anyway?) and her face dropped. She was surprised and exclaimed “and you’re telling this story with a huge smile on your face!?”

That’s not the first time someone has said that to me. I don’t know why I smile about it when I tell the story. Maybe it’s that “awkward, I’m in trouble” smile/laugh as Brene Brown (another amazing inspiration to me) puts it. You know that smile/laugh-we all do it. But I don’t think that’s it. I think it’s because this journey has been nothing but an inspiration to me. It’s been a springboard to recreate and/or address goals and dreams I had been putting off for the elusive “some day, when I am _____” scenario.

Life lesson: don’t put anything off! I’m starting to realize this blog post is riddled with life lessons and cliches. Maybe this is not a product of having cancer and a LOT of time to think and reflect, but just a product of getting old. Thank you, Birthday, for pointing that out to me.

But I digress. Back to that smile. Diana said “With that smile, I don’t just think, rather I KNOW you will beat this thing with no problem.” My response was a simple “Yes! I agree. I know too.” For someone who has been through the trials, tribulations, hardship, and incredible journey that Diana has—she knew that smile, and she knew what it meant. She carries the same smile. It was nice to finally find someone who recognized it and knew what it meant without wondering why on earth I was smiling.

Meeting Diana was another springboard for me to make a plan for a goal I didn’t even know I had. It turns out Diana and her best friend Bonnie are leading a movement next year called EverWalk, where the two of them are joining with millions of Americans and walking literally across the United States, from LA to DC. Anyone can join and walk with them for all or part of the way. They are being sponsored by FitBit and anyone who officially registers with them will get a FitBit so they can log their steps and put their data into a huge database. Diana plans to use this data in addition to her fortunate position as a well-known “celebrity” and health advocate to begin a quasi-grassroots petition to our nation’s leaders to provide the infrastructure necessary to make this a “walking” nation.

Diana, like many of us, is troubled by the effects of America’s sedentary lifestyle and obesity epidemics and realizes it will take a village, a nation, and obviously lots of funding to change the mindset. The mindset can’t change without proper roads, paths, and sidewalks. Even with the best intentions, you can’t expect people to walk to the store when there is no safe way to do so in a suburban sprawling neighborhood with 6 lane highways surrounding the neighborhood’s perimeter. So she’s working to change that. And the best part—the walk begins in Disneyland with 10,000 kids who are making a stand to change American’s mindsets in the youngest generation.

You know I love any purpose to help change the health and mindset of America’s youth. She said that only kids will walk from Disneyland for the first part of the walk. I asked why I couldn’t join too. She didn’t have an answer :).

I told Diana I’m really hoping to be able to join in the walk at some point as it’s an awesome manifestation of my return from surgery and recovery, not to mention walking is my main form of exercise these days and it’s relatively easy to “train” for. So here’s to making that happen!

Quick health update:

No news is good news. All of my labs have stabilized for the most part except some low white blood cells which we expected, so I’m doing my best to avoid terribly diseased masses of people. Except for that recent airplane trip to Dallas and spending time with my unfortunately two sick nieces (who are both better now!). I think (fingers crossed) I managed to escape the illness, mainly because I spent both flights with my face covered with my turtleneck and washed my hands no less than 300+ times per day while I was visiting.

My most recent x-ray 1 week ago didn’t show any change in Benedict, but we also didn’t really expect any. In fact, Dr. D’Amato didn’t really have much insight to offer. This is a good thing! I will get my first official follow up CT scan December 14, follow up with Dr. D’Amato on December 15, then with Dr. Moore (the surgeon) on December 21. Then we will decide if it’s appropriate to have surgery (IE if we can do so less invasively than previously planned) or if we continue with the crizotinib for 3 more months until the next follow up CT in March.

Everyone has asked my what I THINK will happen. I’ve stopped forming an opinion because honestly, the last time I did that—I somehow ended up fainting, in the hospital, and being told that my benign tumor was not in fact benign. I’m learning the awesome (and very empowering) lesson of being PRESENT and just living each day to the fullest and not really worrying or trying to predict what will happen. It sounds cliché, but there’s a reason why that’s a cliché. It’s TRUE.

Sorry I’m not sorry for all the life lessons/cliches.

The only thing over which I have control is how I live each day AND the way I set myself up for surgery—whenever that will be. I’ve modified my diet (again…I know. It’s an endless saga) back to a no gluten and no dairy regimen. It’s not because I’m crazy obsessed with a Paleo lifestyle, but because I have noticed skin breakouts and some other yucky symptoms. As soon as I eliminated these inflammatory foods, my skin immediately began to clear. In case you don’t keep up with integrative and functional medicine like I do, skin is often the looking glass into what’s really going on inside of us.

With chemo blasting my body full of delicious poison, it’s pretty necessary I don’t add to the mix with other things. Poison is good in this case, but clearly my body is freaking out. So, taking out other inflammatory things is not only right, but encouraged. That’s not just an opinion or some fad diet—it’s fact. I’m going to consult with my colleague Jessica Drummond soon to build a great nutrition plan to set my body up for success. I think I’ve mentioned Jessica, but if I haven’t–she is a veritable magician and genius when it comes to health coaching and nutrition. And oh-by-the-way she is a PT too. We’re a pretty awesome breed of professionals, I have to say.

Even though I still have to watch my sugar intake, I’m not fighting Candida anymore. Thank GOD that is over! I’m allowing myself some “time outs” from the diet this time. Birthday and Thanksgiving this week mean some special treats and I am allowing myself to “cheat” out of compassion for being a normal, happy human being! Ice cream and cheese are just too amazing and sometimes, they heal all wounds.

Otherwise, life is charging ahead and I’m feeling pretty good! The retina specialist I saw a few weeks ago didn’t know what was wrong with me so I’m seeing a different specialist at Emory soon. I just had a bizarre retina test today-an ERG for anyone keeping track and wanting to know the nitty gritty details. Just like my PET scan back in July, the best part of the test was the 20 minutes where I was forced to sit in the dark and do nothing. Perfect time for meditation! I’ll get those results back next week.

The good news is there are numerous studies that discuss the side effects of crizotinib on the retina and it doesn’t seem concerning. Hopefully the Emory retina specialist (also a Duke guy!) will give me the all clear.

Hopefully everyone has a wonderful Thanksgiving! I was born on Thanksgiving so this is obviously the best holiday ever. I’m counting numerous blessings and I am continually so grateful for all the love and support that everyone has provided to my family and me. We couldn’t do this without all of you!

So as of tomorrow I will say so long 31, and hello 32! Time to go enjoy the last hours of 31!

Peace out 31 in Chapter 21, Peace out 2015 in the year-end finale: My Year with Benedict: The Cliff Notes Version