Tag: cancer suvivorship

Journal of My 10-Day Silent Vipassana Meditation Course

6 Comments

I learned of Vipassana meditation during yoga teacher training (YTT) in 2016 where I struggled to sit still and hold in the scream wanting to escape my mouth. The others in my YTT class will attest that I was the least likely of the group to take a 10-day course, so I surprised myself when I signed up.

While I continue to process the more serious lessons learned over the 10-days, I thought it would be fun to share a daily log of this often hysterical experience.

Day 0: Nervous road-trippin’. Matthew, the LSU college student, arrived at my house early for the eight-hour drive from Nashville to Jesup, Georgia. We’d been texting for a couple of weeks about our nervousness and excitement. While driving we got to know each other and shared our expectations for the coming days. He learned of the course through a friend and decided it would be a good way to kill time before leaving for a study abroad program. When we arrived at the Dhamma Patapa Center, Matthew and I said our goodbyes. Not only was there no talking, but men and women are separate throughout the course.

Day 1: Flammable meditation hall. My 10-day journey had a delightful start. I and the rest of the group looked like Walking Dead walkers who took magic mushrooms. We slowly shuffled around the property with our heads cocked to the side and stupid smiles on our faces. However, everyone made the rookie mistake of overeating at breakfast, lunch and “dinner”, which was only fruit and tea. By evening the hall was inflated with so much gas.

Day 2: Nauseous freak out. Dare I say I was having fun? I was destroying and dominating my meditations. My focus was laser sharp and I tingled at the end of every sitting. Before this, my eyes were an iPhone 2 and now they are an iPhone X. This was short-lived because by bedtime I was freaking out so much I became nauseous after the evening discourse instructed us to no longer give importance to aches and pains. The determination mediation was starting. I took an anti-nausea pill even though it violated the no intoxicants policy because I assumed vomiting all night will get me sent home.

Day 3: Premature torture. I made it through each session without moving, but the pain was intense and my mind and body had several bloody fights. “I don’t know if I can do this.” At the end of the day, I approached to the teacher who explained, “We don’t start Vipassana until tomorrow.” I misunderstood the instructions.

Day 4: Super Bowl Sunday. It was Vipassana day and everyone is traumatized after an hour of sitting without reacting to itches, sensations, aches and pains. To deal with the PTSD, I spent the late afternoon comparing Vipassana to the Super Bowl. I created a fantasy that the teacher and other staff were having a Super Bowl Party. I pictured them in the hall, sprawled out on our cushions, eating queso and chicken wings in their respective Patriots and Eagles gear.

Day 5: Miserably bored. Even though I am walking around with a perma-grin after breaking noble silence with Matthew via eye contact and a smile, the day ends bad. The evening discourse discussed how life is full of miseries. I decided, “I am miserable. Not in my outside life, but in this moment. Miserable because I am so bored. Bored to depths I could have never imagined.”

Day 6: Save Matthew. The 10.5 hours of daily meditation was getting to me, so I decided to give myself some PTO. I traded the 4am sitting for extra sleep and instead of meditating in my room I spent the afternoon walking in the woods and laying on the dock. This works and my spirits rebound. At “dinner”,  I see Matthew through the dining room window. He was barefoot and staring into his tea-cup for at least three minutes. I have an urge to call his devout catholic mother who feared he was being indoctrinated into a cult. “Mrs. Matthew’s mother? Hurry. Come fast. They got him.”

Day 7: Fireworks in my brain. A storm was brewing. I noticed agitation growing during the morning sitting. Then within minutes of closing my eyes in the afternoon session I was crying. A terrible event was, as the teacher says, coming to the surface and something real is happening. Inside my left ear, I felt popping and heard, what sounded like, distant fireworks. Per the instructions, I didn’t react, but observed and at the end of the hour, my face and clothes were soaked with tears.

Day 8: So much anger. I met with the teacher and asked about the pops and fireworks. She shrugged her shoulders. Great. Thanks for the insight, guidance and encouragement. My frustration with her grew when at the last sitting of the day, I hung my head low to stretch my neck and back. The Course Manager, Marie, approached me with a message, “Teacher says for you to go take rest.” With attitude and anger, I said, “No.” This was the first time I felt singled out because of cancer and I wanted no part of it.

Day 9: So much anger (Part 2). When I entered the mediation hall that morning, there was a chair holding my pillow next to my meditation cushion. With severe rage, I wanted to punt the plastic chair across the room. I stomped over, angrily return the pillow to my cushion and sat for the hour with fury and indignation. Afterwards, I walked to lunch and saw the Course Manager, Marie, coming toward me. My blood was boiling. I planned to tell her, “I didn’t ask for the God expletive mother expletive chair and I don’t expletive want it.” As her eyes grab mine, I’m stopped in my tracks. Marie has the most beautiful eyes I have ever gazed into. They are every color and shade an eye could be – blue, green, hazel and brown. I realized I have not looked into anyone’s eyes for over nine days. She says, “Stacie, that chair is there for you if you need or want it at anytime. If not, that’s okay too.” Still lost in her disarming eyes, I say, “Thank you.” Immediately, I realized their voodoo got me. I have remained equanimous. I know what I need to do. That evening, I sat in the chair out of acceptance of the compassion (and not pity) it represented and out of gratitude. When I went to bed, I noticed for the first time in days, I was not angry.

Day 10: A happy day. At 10am, noble silence ended and I was never so ready for anything in all my life. Instantly, I was met with high-pitched squeals, laughs, voices and excitement. It was overwhelming, loud, chaotic and disorienting. The rest of the day I gravitated towards smaller, more quiet groups. It was wonderful getting to know the stories of the strong, badass, women I sat in a room with for nearly 110 hours. Hearing their experiences I realized I wasn’t the only one in pain, anger, boredom and euphoria. We spent the warm, sunny afternoon reuniting with the mens group, eating, talking and laughing in the grass around the pond. It will remain one of the most treasured, memorable and happy days in the record of my life.

Day 11: Breaking out. After a final 4am wake-up gong and two-hour meditation, we were paroled from the self-imposed prison. Matthew and I partook in the symphony of squealing tires – everybody could not get out of there fast enough. He and I drove back to reality, talking and not talking the whole way. After a quick stop in Atlanta for tacos, we both agreed the outside world felt like a video game. As for Matthew, I could not have chosen a better person to spent 16 hours in a car with. Who knew I’d develop a connection with a 20-year old southern college student? Certainly not me, but I have learned that some of the most special bonds in my life have been created with those in unexpected packages. Tacos and video games aside, I could not to wait to get home to Fabien, who I longed to talk to thousands of times in the past ten days. I am so lucky to have a partner who not only encourages, but supports my crazy pursuits. I arrived home to a clean house, flowers and a thoughtful card. After retelling the day-by-day play-by-play, we went out for long-awaited wings and queso.

Stay tuned for my next blog post where I’ll hash out the insights and lessons learned.

World NETs Day

4 Comments

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

6 Comments

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”.