Chapter 38: My First Surviversary!

This first birthday/anniversary probably won’t feature a high chair, a bib, and a smash cake (though I suppose anything is possible), but we do have an awful lot to celebrate today.

At this time (7:49 AM) on May 19 one year ago today I was asleep in the operating room and my #takethatbenedict dream team was just setting out on an extraordinary voyage–one even they didn’t know would take some unexpected twists and turns that day. I’d spent about 2 months getting my game face on and my heart and mind ready for the marathon I didn’t know I was about to face. 2 months prior to this day I was busy having meltdown after meltdown. Despite the fact that I knew surgery was coming–when I was told those magical words “It’s time….” I was not ready to hear them.  I did a LOT of inward diving and reflecting, a LOT of mindful listening to what I really needed, and the day had finally come. I was a new person. I had put on my Official Uniform of the #takethatbenedict Task Force. I had tattooed myself. I was at peace, I was (dare I say) excited, and I was not scared. I had surrendered.

Cue tears. Yes, I’m talking about mine. #sorrynotsorry if you’re crying too. Believe me, you’re not alone! I get it!

10 hours later I woke up in the recovery room–and let me just go out on a limb and surmise that most people don’t remember much about the recovery room–but I remember something quite vividly. One anesthesiologist was standing over me and speaking to my PACU nurse, and said “WOW, you have GOT to hear about THIS surgery. THIS patient is DEFINITELY going to the ICU.”

Uh, well…that is not the first thing anyone wants to hear when they wake up. But wait, I am awake, which means…it’s over. And I made it through. And…I’m here. And…oh wow. Benedict is gone. Well, I hope he is. I wonder what they ended up doing? I don’t know and I can’t really talk right now because I am SO. DAMN. TIRED. I’ll find out later.

Then I glanced at the clock.

That clock says 5:30 PM. Huh, that clock must be totally wrong. They should fix their clock because it should be around 12:30 PM since my surgery was only supposed to be 5 hours long.

2 hours and a few respiratory treatments later in the PACU–because when you have a large part of your lung removed, that will quickly become a part of your life—they wheeled me to–yes–the ICU. Hmm…I still don’t know why they’re taking me here?

By this point it was about 8 pm and I. WAS. STARVING.

My nurse came in and introduced herself, told me no–I still could not eat or drink anything until the Speech Therapist cleared me to do so. NOOOOOOOO—not the “you have to wait on the therapist” argument! I AM a therapist and I KNOW why you’re telling me that! She also told me that it would shape up to be a LONG night and I should not expect to sleep. Well that’s fine, I just slept for what appears to be 10 hours. Let’s party!

She was kind enough to bring me a sponge on a lollipop that was soaked in water. Mmm….lollipop sponge. Hey, maybe I’ll celebrate today with one of those! I quickly learned these would be my best friend for the next 24 hours. I had 2-3 respiratory treatments and as the anesthesia started to wear off, quickly started requesting LOTS of ice and pain meds. Ouch.

Daniel and my parents finally came in. I looked at Daniel and said “WHAT HAPPENED?”

Well…so the original plan was to remove some ribs, remove my lung, patch me up with gore tex-ish material, add some metal ribs, move a chest wall muscle, and that would be that.

Daniel said “Welllllllll……so they did the original plan….but they also had to take your phrenic nerve.”

FUCK.

Seriously, he may as well have just said “Voldemort did your surgery.” Without boring you with all of my nerdy professional passions–lemme just say that this physical therapist was NOT thrilled that they took out the nerve that goes to my diaphragm. In that moment, in my mind, it couldn’t have gotten any worse.

Grasping for hope, I said: “Well…did they put it back?”

Daniel didn’t know, so I put that on the top of my list of questions to grill the surgeon with when I saw him next. Speaking of surgeon–Daniel also informed me that the surgery took 10 hours–not the original 5 that had been proposed. Oh, I guess that clock wasn’t wrong.

He said that at the end of the surgery, Dr. Moore looked completely beat. Dr. Mackay had been cheerful (because he always is) and I had been through a lot.

For the rest of the night I got very little sleep, attempted to be sat up (no, I couldn’t sit myself up) on the edge of the bed with the nurses and failed that MISERABLY, did a little more respiratory therapy, and dreamed of eating and drinking. #hanger

The next day was a busy one in the ICU. Attempt #2 to get me out of bed with the PTs was much more successful, and I even walked up and down the hall then sat up in the chair for a while. BOOM. No sweat.

This repeated again. And eventually, I got to ask all my questions. No, they didn’t replace the phrenic nerve. Yes, they sewed up my diaphragm. No, it would no longer function on its own. Yes, I would be fine. Fine?! You think I’ll be fine!? Are you aware that muscle does more than help you breathe!? 

I did PT again and then they transferred me to the pulmonary unit. Turns out Daniel knew one of my nurses and we were most definitely in good hands. AND–I got to eat….wait for it…JELLO! BEST NEWS EVER!

My hospital course had a few twists and turns after that, complete with an arrythmia, a blood clot, and 5 more days in the hospital than we planned, but it turned out to be quite a catalyst for transformation.

Here’s the highlight reel:

  • Within 32 days of going home, I was back into the pool allowed to float and kick.
  • 45 days–“real swimming”.
  • 13 weeks: Surgery #2 to remove the metal ribs I’d broken.
  • 4 months: I met a huge goal of completing a 1 mile open water swim in Swim Across America-Atlanta, all while raising $5000 to benefit the AFLAC Cancer & Blood Disorders Center at Children’s Healthcare of Atlanta.
  • 4 months: I began radiation.
  • 5.5 months: Election Day: I finished radiation.
  • December 8: I finished treatment for the blood clot.
  • December 10: first glass of wine in 2 years!
  • January 31-Feb 26: I earned my prize trip to New Zealand and Fiji. Daniel had asked me in the hospital where I wanted to go if I could go anywhere–and that’s what we ended up manifesting. It was a month long life changing trip, and I am so grateful for that. Also worth noting–on the way back from our trip we stopped in LA and I met one of my rock star lung cancer heroes: Emily Bennett Taylor. We coined the new hashtag #makelungsgreatagain.

So one year later–what am I up to now?

I’ve still got a few health “kinks” to work out that sometimes really get in the way — including some anemia and fatigue. You may have read before that a teensy piece of Benedict is still hanging around (it’s dead and meaningless to me–but it’s still there). As of my last scan in early March 2017, it has neither grown nor shrunken. So we’re just keeping a distant watchful eye out for that. My old pal Candida Esophagitis came back to visit, but he didn’t stay long because I’m now a self professed Certified Candida Crime Fighting Expert. That does mean I’m still on–yep–you guessed it–a pretty restricted diet (no gluten, dairy, sugar, alcohol caffeine, soy, etc) but in stark comparison to my Candida Crime Fighting escapades of yesteryear–it is really no big deal to me. That’s ok though. This is where I am, and I’m perfectly happy to be here and honor myself. Everyone asks how I do it, do I feel deprived, do I miss chocolate and coffee and pizza and cheese, etc. Yes of course I do–but feeling good is so much more worth it. It’s easy to make that choice!

Otherwise–I’m doing great! I’m back to building up my business, PRISM Wellness Center, I’m pioneering a movement to honor and champion the health and wellness of athletic and active girls called PRISM STRONGirls, and I’m training — albeit slowly and gradually — for Swim Across America-Atlanta this year. There have been a few set backs but hey–I’m no stranger to set backs keeping me from swimming–and I can do this. I’m also volunteering in a big way to help coordinate and plan our event this year–and I couldn’t be more excited to do so alongside some of my biggest supporters.

I also have begun recruiting ANYONE and EVERYONE to join and support Team #TakethatBenedict and we are also swimming alongside and in honor of one of my other big heroes: Grace Bunke. Grace is a 14 year old fellow sarcoma survivor who has undergone a myriad of heroic journeys herself, and is currently on track to train for the Tokyo Paralympics in 2020. She is truly the embodiment of Amazing Grace.

So, in honor of my my 1st birthday/surviversary–I’m putting out a BIG ASK.

Will you please donate to support my fundraising efforts and my swim this year?

I’ve set a goal to BEAT my $5000 fundraising total from last year (I’m a little competitive…what can I say) and I NEED your help! I couldn’t have gotten there last year without your help, and I need it in a big way this year! All funds benefit the children undergoing cancer treatment at the AFLAC Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta. Children like Grace. Children like the kids I see at Egleston when I work as an inpatient PT one day per week. THEY need our help, and it’s the least I can do to swim in their honor. I can’t do it without you!

You can visit my page to make a donation here!

I can’t wait to jump in and #makewavestofightcancer, and I hope you can join me in the quest!

Perhaps most excitingly—I spent several of the last weeks reflecting on the quest I’ve been on the last few years. There have been a lot of tears. There have been a lot of triumphs and smiles. I am SO SO overwhelmed with gratitude for all of it and the beautiful transformation it has made on my life. I pondered what would be the best way to honor myself and this journey I’ve been on. What “present” would I give myself. Finally, the answer came, and I present to you the following movie I made depicting the story itself. These are all photos and videos we took along the way–in chronological order–complete with the songs that really got me through the whole thing.

I hope you can reflect on this journey with me, maybe find a little inspiration and a smile as well! I make no promises your eyes won’t feel a little damp. Enjoy!

Watch the #takethatbenedict 1 year movie masterpiece here!

(FYI: The movie is 48 minutes long–so be sure to get a glass of wine, a bucket of popcorn, and ENJOY! It’s worth it!)

Can’t wait until my 2nd birthday!

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