I have mixed emotions about these “holidays”. Part of me thinks they’re important to acknowledge what we’ve endured, those we’ve lost and how far we’ve come. The other part of me hates that I even know about World Cancer Day and have yet to figure out the greatest epidemic in human history when we walk around with computers in our pockets, shoot cars into space and create lab grown meat. But, I’m also grateful to be living with neuroendocrine cancer now and not 20 years ago.
Since I was diagnosed in 2014 nearly every drug responsible for keeping me here wasn’t even an option. In fact, this afternoon I’m heading to the cancer center for my Lanreotide injection – a medicine that keeps my symptoms in check and was FDA approved three months after my initial diagnosis.
With some luck, I’ll be able to make it through cross town traffic to my yoga class to sweat, breathe and move in a way foreign to even the healthiest of people. At the end of class, as I always so, I’ll thank my body for giving me another day.
In honor of World Cancer Day, I’d like to take the opportunity to share this little video I put together for Neuroendocrine Cancer Awareness Day (November 10th).
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…
This blog was featured on First Descent’s Out Living It blog. First Descent’s is a non-profit that offers young adult cancer survivors (FREE) adventure trips where they learn the healing power of community and nature through participating in activities such as kayaking, rock climbing and surfing. In September 2016, I attended a First Descents Surf Program in Santa Cruz, California. Read about that here. If you’re interested in learning more about this wonderful organization, check out their website, https://firstdescents.org.
If you’re reading this, you don’t need me to tell you that cancer is a sneaky trickster. The disease invaded every corner of my life and just when I think I’ve got it figured out, it jumps up and grabs me from behind. It’s latest surprise – anxiety.
I was diagnosed three years ago. In retrospect, it’s pretty incredible anxiety only recently crept into the equation. For some reason, I thought I would get by unscathed by this common side effect of cancer.
My relationship with anxiety started one morning in March. I woke up to a missed call from my doctor’s office. It wasn’t even my oncologists office, but the mere presence of a doctor’s number in my call log triggered a misfire in my brain causing me paralyzing fear. I could not do anything the entire day but obsess about how I was going to suffer and die. Instead, I spent my waking hours crying, clenching every muscle and felt as if my lungs were closing in on themselves. The next day, I was fine.
A few weeks later, it happened again.
I often see articles suggesting anxiety victims to relax, exercise, meditate, get enough sleep, focus on the positive, etc. Admittedly, I might have even doled out some of this terrible advice myself in the past. After much thought, I realized the reason this is bad advice is because it’s not specific enough. Talking with my therapist, she explained that in the midst of anxiety, our brains do not function sufficiently where we can even come up with ideas to make ourselves feel better. She then urged me to create an Anxiety Reduction Plan consisting of specific activities I can execute when anxiety strikes. Here’s what I came up with for myself:
Go for a walk, run or to yoga
Call a friend to hang out
Memorize, write out and repeat to myself (I can now recite three Maya Angelou poems, the seven axioms of yoga teacher training and countless famous quotes)
Do a (yoga) forward fold (this pose has been proven to reduce anxiety)
Close my eyes and take 10 (or 100) deep breaths
Write a reminder message on my hand (“You’re okay,” is my go-to)
Write a list of 100 things I’m grateful for
Clean the fridge, floors, garage (I love organizing)
Go to a park with some markers and a coloring book
Send a card or gift to someone I’m thinking about
Do a random act of kindness
Take a bath or shower (something about water and being clean makes me happy)
Create and execute a schedule (7-7:30 drink coffee and catch-up on news, 7:30-8 shower and get ready, 8-12 work, 12-1 lunch, etc., etc. Sometimes, I just go through the motions, but it’s better than obsessing all day)
Now, when I wake up and feel the walls closing in, I pull out my sheet of paper and start running down the list. As a disclaimer, I’ll admit that going through these motions does not always take away or reduce the anxiety, but for stretches of time I am redirected, which provides doses of solace.
As it turns out, my therapist and I are not on the brink of discovering a new physiological method. I recently listened to the Good Life Project podcast and later found a Ted Talk describing the approach the American Psychological Association calls, Positive Activity Interventions. Their studies also show being told or trained to “think positive” and/or confronting past trauma isn’t enough. Instead, their research revealed consistent simple actions, such as those listed above, not only make the miserable less miserable, but, over time, reinforce positive states of mind and improve levels of happiness.
So, what’s on your plan? Now, write it down, fold it up and put it in your wallet. Hopefully you’ll never have to use it.