World NETs Day

Friday, November 10th is World Neuroendocrine Tumor (NET) Awareness Day, where those impacted by the disease take to the streets, cafes, medical facilities and, most of all, social media to raise awareness about a relatively unknown disease with an increasingly high incidence rate.

Last year, I attended a luncheon hosted by the Healing NET Foundation featuring a popular specialist, Dr. Eric Liu. Up until that point, I had only met one other person in real life with the same disease, so it was pretty neat to be in a whole room of fellow zebras*. While there, I quickly noted that myself and another girl were the youngest people in attendance, so naturally, we gravitated together and exchanged info.

Let’s just call her, “That Girl”.

Over the past year, we’ve gone on regular lunch dates and supported each other through trying times, both cancer and not cancer related. While our “cases” are completely different we share similar mindsets, aches and pains. BUT, we also have a lot of fun and are both willing to yell “YES” to things outside our comfort zone.  For example, at our first lunch, I also told her about First Descents, a group that takes young adult cancer survivors on adventure trips. The next time I saw her, she was signed up to spend a week whitewater kayaking with organization. And not only did she embrace kayaking like a badass, but she returned from the week to face some hard, life changing decisions. She’s a fellow dream chaser, giver of zero fucks and is pretty darn inspiring.

NET Cancer Day is technically our anniversary, I figured we should do more than lunch. Plus, since we are both First Descent Alumni, we needed to fulfill the “Outliving It” motto. So, with “That Girl’s” signed permission slip of, “if you do it, I will too,” I planned our day, which was a surprise to her until she showed up at my house Friday morning….to go hang gliding.

We drove two hours away to Chattanooga, talking, excited, nervous and not knowing what to expect. Upon arrival, we were both relieved I didn’t buy the “run and jump off a mountain” package. Instead a plane pulled the glider from the ground. It was a cold, but beautiful, clear day and we were lucky enough to catch the last weekend of gorgeous fall colors as we sailed through the sky from 2000 ft. above Tennessee, Georgia and Alabama. It was a lot of fun and I would love to do it again.

After a lunch of laughs, sandwiches and hot soup, we walked around downtown Chattanooga enjoying the sunshine and city before making a last stop at Pointe Park to watch the sun slide behind the mountain. With both of us content and exhausted, the two hour drive home went fast thanks to podcasts, gummy bears and one of the most gorgeous sunsets I can remember.

I hate that I even know NET Cancer Day exists, but love that I got to spend an absolutely perfect day with That Girl. We’re already planning for November 10th, 2018.

*Why zebras? “When you hear hoofbeats, sometimes it’s a zebra and not a horse.” The NET Cancer community has adopted this animal as a mascot and international symbol, because in the medical community it is universally used to reference a rare disease or condition. As a personal disclaimer, I dislike the reference but can’t quite articulate why…

To learn more about Neuroendocrine Tumors (NETs) visit www.carcinoid.org.

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Review: Everyday I Fight

51zYCKX2OoL._SX332_BO1,204,203,200_I’ve been hoarding this book from my public library for months and received word they want it back, so I’ve spent the last few days immersed. Disclaimer: I love Stuart Scott and first remember him, not from ESPN, but the VH1 documentary series, “I Love the 70s/80s/90s”. He was hilarious and those are totally worth watching on YouTube. They are hysterical and will remind you of all the forgotten pop culture trends of your youth.

I digress.

I fell even more in awe of Scott when his 2014 ESPY Award speech went viral around the time when I was diagnosed with a Pancreatic Neuroendocrine Tumor.  In his inspiring speech he encouraged those “in the fight” to cry, “Live. Fight like hell. And when you get to tired to fight, then lay down and let somebody else fight for you.” I still can’t watch it without sobbing. And when he died in January 2015, I took it personal. So, I should’ve known that reading his words would hit me right in the feels and leave a puddle of tears and tissues on the floor next to the couch.

‘Everyday I Fight’ expressed many of the thoughts that pass through my brain regularly. Let me share a few passages and sentiments I found powerful:

“Once you’re told you have it, cancer is never not with you. My life was now forever divided between the before and the after of my diagnosis. I’d look at people walking by and I’d think: ‘You don’t have cancer.’” Then, “I came to realize what I was really doing making these observations: I was noting the innocence of others. And on some level, I was mourning my loss of the same. I would never have that again. That carefree, total immersion in simple moments. From now on, whenever I laughed, it would no longer be an innocent laugh;” Wow.

“There’s not any time of any day that you forget you have cancer. You never have a moment when you say to yourself, ‘Hey, wow, I forgot I have cancer.’” I feel like this could be applied to situations where family or friends don’t mention the word in my presence. Perhaps they are thinking it will only remind me. And I’m here to echo Scott – I am NEVER unaware that cancer is a part of my life. It’s better to acknowledge it and move on than to be silent.

Later he describes his surprising indifference when his doctor told him his body showed no signs of disease. His response to the “good news”: “that anxiety never leaves you. In fact, it only gets worse – because you’re no longer taking proactive steps to combat the disease.” Man, I have been there. In fact, I’ve notice my anxiety is heightened when I am classified as “No Evidence of Disease”.

Scott reached out to Lance Armstrong for advice who told Stuart it took 12 years of clear scans for that anxiety to fade. 12 years where he didn’t have cancer on his mind every second of everyday. 12 years! That’s over a decade where Armstrong was killing it on the bike – okay, say what you will, but the man is an endurance athlete through and through.

After the inspiring ESPY moment, Stuart wrote of the most impactful review of his performance written by then Slate intern, Eliza Berman, “The Most Moving Thing About Stuart Scott’s Speech at the ESPYs,” where she writes, “Cancer is a ‘battle’ People with cancer are ‘fighters’ and if they don’t die from the disease, they are ‘survivors’…The problem is one of language. We have a tendency to foist heroism upon people with cancer in a way that might, at first glance, seem generous and celebratory. But it can also be damaging…Saddling people with cancer with Herculean expectations fails to acknowledge that it is absolutely normal to feel afraid, to feel like you can’t go on, to actually want to give up…This guy (Stuart Scott) who the video showed in the (literal) boxing ring, and on the sidelines of his daughter’s soccer game – even this guy sometimes can’t fight…The world needed to hear that. Scott’s public ambivalence about the superhero cape he’s been given was a gift to all those who don’t always feel like superheros.”

Truer words have never been spoken on the subject of cancer. To read the whole article, click here and if you need a little inspiration or perspective today, (re)watch Stuart Scott.

May he be upstairs screaming “BOOYAH” and jamming to “Rappers Delight”.

 

Hands in the Air if You’ve Had Radiation

The last week of September I took advantage of a cheap flight and travelled to my home state of Michigan for a week of visiting with family, friends, my beloved home yoga studio, all the yummy food I miss and cooler fall weather.

I also decided to take this opportunity of proximity to drive to Toronto and visit my dear friend, Kevin. Those of you who read my blog regularly might recognize him as the main character from my days on the El Camino de Santiago. (Catch-up on those here)

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Kevin in his natural habitat

Toronto is only a few hours drive from Detroit. As I crossed over the border, I texted Kevin giving him my ETA and joking that I had successfully duped border agents because I won’t be coming back to the United States. I mean, how could I resist affordable healthcare, sane leadership and Tim Hortons? I’ll tell you how – snow and cold weather. Politics, healthcare, coffee and hypothermia aside, Kevin, I and his partner had a lovely evening catching up, followed by Kevin and I spending the next day eating and walking around his Toronto neighborhood (a la Camino style).

On the way home, I enjoyed the drive and opportunity to catch up on my podcasts. Thankful for only one car ahead of me in the US Customs line, I pulled up to the Border Agent window and handed him my passport, ignorantly thinking I’d be home soon for a nap before evening yoga.

“Ma’am, have you had any recent medical procedures?” How much time do you have? Was my first thought. Then I looked in my rearview mirror to see six Border Agents and two German Shepherds.

I explained that I had a radiation procedure three weeks ago and the group of agents asked me to pull over to Secondary Inspection. It was a little surprising to find I’m still emitting radiation even though I’m well out of the quarantine period of six days for pregnant women and children and two days for general public.

In Secondary Inspection I retrieved the card provided to me by Excel Diagnostics – Thank God I kept it. They asked me several questions about the procedure all the while scanning me with a radiation detector, which first indicated I was emitting “Plutonium”. The following several scans revealed an “Unknown” substance.

Since they couldn’t determine the isotope, Border Agents asked me to come into the US Border Customs & Immigration building while they “called it in”.

While I sat and waited in the lobby, the only other person who entered the building for Secondary Inspection was a man with a turban, who was held by Agents at his wrists and taken into a room. I have no idea why he was selected for additional questioning, but the skeptical liberal in me drew some conclusions. The Agents never doubted my story and were only following protocols when I was told they’d have to “call it in”. There was no holding of my wrists and I wasn’t taken into a room, even after testing positive for Plutonium. Instead the Agents offered me a bathroom, let me hold onto my passport, called me “Ma’am” and promised they would be quick. I’m not trying to make a moral of the story case here, but a large part of me felt for this man and others who endure this type of treatment throughout their lives.

For those of you who have travelled to other countries for PRRT or another radiation procedure, this story is not unique. Had this experience occurred while I was a cancer underclassman, it might have upset me, but as I enter my senior year as a survivor, I was able to call my husband laughing as Agents cleared me 30 minutes later.

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Cloudy with a high chance of affordable healthcare