The Season of Grief, Gratitude & Compassion

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As featured on curetoday.com

The last few years fall has been a season of challenge for me. In 2014 I was recovering from a distal pancreatectomy and splenectomy after my pancreatic neuroendocrine tumor diagnosis. In 2015 I was recovering from a liver resection, months of chemotherapy and a serious case of PTSD. In 2016 I had a surprise surgery due to a bowel obstruction, a complication from my previous abdominal surgeries. And this year, I am undergoing an experimental treatment, but overall, doing well and grateful to not be watching leaves change through a hospital window.

I admit I tiptoed into autumn holding my breath with optimism I would exit without a traumatic event. While there are still a few days of the season left, I, personally have been spared, but others have not been so lucky, creating a new kind of trauma.

Between September and today, there were four people in my circle who died from cancer. They were all young and all women, making their deaths too close to home. One was a young mother I met in a luncheon in New York City who had a very similar case to mine. We exchanged emails regularly and I got scared when the messages stopped coming only to find my fears realized when I logged onto Facebook after a hiatus to see she had passed away. Another was Beth Caldwell, who died from neuroendocrine breast cancer. I only knew her from social media, where she was revered for changing the advocacy game. And most recently, a friend of friend, who died from pancreatic cancer.

Another one of these new angels was a fellow Cure Magazine contributor, Jen Sotham. I also never met her, but enjoyed reading her blog and being Twitter friends. I always thought she sounded pretty cool and someone I’d be friends with in real life even if we both didn’t have cancer. When I read her last blog, Don’t Think Twice, It’s Alright, I could not help but smile and be sad at the same time because she did it – she won. She didn’t die while still living and she didn’t let the disease break her to the point of bitterness. In fact, Jen got to say goodbye, in a pretty cool way.

Unfortunately, cancer wasn’t the only grim reaper to make an appearance this fall. There was a tragic death of a friend of a friend whose family was already grieving a huge loss. Also, my husband came home one day with terrible news of a colleague that passed away, from a massive heart attack leaving a wife and two daughters. He simply left in the morning to go hunting and didn’t come back. I think of both these families and am heartbroken to think they are left replaying last, perhaps mundane, meaningless conversations and without “I love yous” or important words said. It definitely makes me ask, where is the justice?

With each death I lit a candle and sat for a quiet few minutes processing my feelings. Of course there was sadness, but more than anything there was appreciation for my own life and the people close to me. I feel gratitude for still being here, having an excellent quality of life and for the warning cancer gives.

These losses also have me treading into the holiday season with renewed compassion as I encounter angry traffic, tired crowds and over booked schedules. Knowing the chances are high that the person in front of me experienced loss and hardship this year. I find myself pausing, slowing down and truly appreciating, like never before, the intangible gifts of life, family, friends and my fellow-man. My only wish this year is the same realizations for everyone (hopefully without experiencing death and cancer). And may we all take a moment to light a candle for those empty spaces in our life and the lives of others.

For some inspiration, watch the Jen Sotham’s TEDx talk here, which she gave days before passing away:

Check out my other articles on Curetoday.com

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.

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”.