Tag: young adult cancer

Learning to Breathe

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fullsizeoutput_1546Carcinoid NETs Health Storylines presents Zebra Tales! This is a brand new feature which will allow you to learn from the experiences of others within the NETs community. For our first Zebra Tale, Stacie Chevrier shares her journey with NETs and how her dedication to yoga has enhanced her own life.

When I walked into my first yoga class in 2007, I was confused. During 60 minutes, the teacher lead students through a long sequence of postures followed by moments of no instruction. I was uncomfortably close to my neighbors and everyone was breathing funny. I can’t remember why I went back, but I did and with diligent practice I learned the physical poses. Little did I know it would become so much more than exercise.

In 2014, I was diagnosed with a metastatic pancreatic neuroendocrine tumor, the same cancer that killed Steve Jobs. Through surgeries, chemotherapy and radiation, I continue to use the valuable lessons contained in that one hour yoga class to navigate the disease.

Some instructors start class by telling students to leave their problems at the door, which I find impossible. Yoga has taught me the mental strength to sit with things that are uncomfortable. Sometimes this is a yoga pose, a 45 minute MRI, anxiety, etc.

During my early days of yoga, I often became frustrated by forgetting the long sequence, but eventually realized that was by design. I now understand the teacher’s intention was to empower students to figure out what is best for them on their own. This method taught me to follow my instincts and that I don’t need to follow someone else’s plan because I am in charge of my body.

Another important concept this practice has gifted me is the ability to truly be present. During my practice I become so focused on breathing and the series of poses that I don’t have time to think about cancer, the uncertainty of the future or the traumas of the past. I have been able to translate this while off the yoga mat. When I notice anxiety building, I stop and tell myself, “Right now, in this moment, you’re okay.” Because in the grandest scheme of life, the present moment is all any of us are guaranteed.

Last summer in class, I had an incredible moment of clarity in an uncomfortable core pose, when my teacher said, we hold our issues in our tissues. I realized after years of always avoiding core work, that I didn’t avoid core work because I was weak, but I avoided it because that’s where I hold my stress, emotion and issues. After a lifetime of avoiding this area, it’s no wonder that’s where disease developed.

However, the lesson that has been most valuable to me is that yoga taught me to breathe. Through a one hour class, I take approximately 600 big, intentional, long, strong, cleansing, releasing breaths. Before yoga, I’m not sure I took one deep breath a day. Through my most difficult moments, I remind myself that the only requirement is to breathe. As long as I can accept air in and out of my lungs, I am still here living.

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Photo: Emmy Singer, Inner Light Yoga

I am grateful for the teachers at the Center for Yoga, Inner Light Yoga and Lifepower Yoga who have taught me to breathe through a life with chronic cancer.

 

fullsizeoutput_1545Do you want to share your own experience with NETs? Email: linda@selfcarecatalysts.com

Log into Carcinoid NETs Health Storylines App and click on the Zebra Tales icon or click here to create and access the tool online.

Click here for the Carcinoid Cancer Foundation’s announcement.

 

 

PRRT Diary #3: Magic

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My blog has been quiet lately. I’ve been working on other projects and enjoying fall, which I haven’t been able to do in years because of surgeries. The fun, productive days sailed by and before I could get my fill of pumpkin spice everything, it was time for my 3rd Peptide Receptor Radionuclide Therapy (PRRT).

My pre-tests revealed normal blood counts, a falling tumor marker and no need for short acting octreotide injections. Smiles all around. Therefore, the husband and I decided a weekend of fun was in order before a week of not-fun.

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IDK, but I hardly look like a cancer patient, no?

With a late arrival in Austin, followed by a long night of sleep, we ventured downtown Saturday morning for breakfast, a walk to the Texas State capitol and a city Duck Tour. Disclaimer: we’ve never done one of these cheesey tours and I can say with 200% certainty that we never will again. OMG – it was awful. First, it was so damn cold. Second, we didn’t learn anything about the city. Third, the guide’s jokes were not funny. Fourth, they gave everyone duck kazoos, including the kid behind me who has permanently impacted my ability to hear from my left ear. Lesson learned. Newly impaired hearing aside, afterwards, we hit up a local recommended food truck (Torchys) for tacos and they did not disappoint. In fact, I think they were the best I’ve ever had and I am serious AF about tacos. The rest of the day was spent walking around South Congress and 6th Street enjoying the Halloween costumes.

Sunday was warmer and a picture perfect fall day. We rented bikes and rode around the city for hours stopping only for an hour long kayak adventure on Lady Bird Lake. In the evening we ventured outside our comfort zone to a Haunted House, which was good fun.

The following morning we took the Megabus to Houston – queue the jeers and boos.

Early Tuesday I reported to Excel Diagnostics for a full poking (port access), scanning (MRI, PET and Chest CT) and starvation test (I think exit pizza should be legally mandated if you’re forced to fast for anything over 4 hours). I even had to return Wednesday morning for a renal test.

I have to be honest – I was kind of a basket case. These tests were more lengthy than usual because my doctors thought we should do a halfway check-in. While I waited for the results my mind filled with all the worst case scenarios. Fortunately, my husband is very good at talking me off the ledge. But still, scanxiety is a real, tangible thing, people.

Wednesday afternoon we returned for the results. And with much excitement, my doctors shared that I’m tracking at 20% shrinkage. BUT, I re-did their math and it’s actually 22%, so I’m taking the Goddamn extra 2%.

Let me emphasize something, because I understand why some of you might not be impressed with 22% at the half way point – THIS IS HUGE. Medicine has never done anything but stabilize me in the past. Surgery has always been most effective on me, so it feels incredible to have found something that works and doesn’t result in cutting me open.

Later Wednesday night, the Houston Astros won the World Series, so it is with 300% certainty that I say there was some special magic floating around Houston and I am so grateful to have received some of it.

But, the celebration was fizzled because Thursday I still had to be infused and thank God some of that magic from Wednesday carried over because, finally, I avoided nausea and vomiting from the amino acids they give me to protect my kidneys.

Friday, I was back at Excel for a quick scan to reveal the medicine was in place and we headed home to Nashville that afternoon.

The only negative thing that came out of Houston this visit was a cold my husband and I both picked up during our travels. Fortunately, it wasn’t too bad. We pretty much spent the weekend watching Netflix on the couch, ordering take-out, which is probably what we would’ve done anyway.

Once Monday rolled around, we were both feeling better and the only agenda item for the day was a trip to Vanderbilt University Medical Center for my Lanreotide. I’ll admit, I was pretty tired on Monday, but in a psychic stroke of genius I planned my appointment for 6pm, which allowed me to avoid traffic, wait times and rising early, which is no bueno for me. Each day I woke up with more energy and by Thursday, I was fully back to the land of the living. So much that Friday, I went hang gliding for World NETs Day. Read about that here.

Even better, I am officially free from cancer treatment until the 2nd week of January and we are off for fun in the sun and a European holiday.

Ciao!

World NETs Day

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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.