The Blurry Lines of Cancer

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As featured on curetoday.com

Those of us in cancerland know that cancer isn’t always black or white, and the line separating cancer and cancer-free isn’t always thick and dark. We know that the word remission is a bit taboo, so the goal of this post is to educate the cancer muggles on the gray area where this disease can sometimes rest.

After being diagnosed with a pancreatic neuroendocrine tumor in September 2014, I underwent surgeries and treatments until my body showed no evidence of disease (a favorite term among oncologists). I went along for a year, crossing my fingers the illness would leave my life, but also knowing the statistics behind this cancer and that it would probably make an appearance again.

During those months, I was free of any signs of disease, when a questionable spot popped up in my liver. Radiologists debated whether it was contrast build up, a new tumor, but even the tumor board (an oversight committee) couldn’t come up with a definitive conclusion. My (usually very sensitive) tumor marker remained normal, so they threw me into a dreaded strategy of, “watch and wait.”

I asked my doctor, “So, do I have cancer?” and in a nutshell, he said, “I don’t know. Maybe. Maybe not. Go live your life and come back in a few months. We’ll scan you again.”

Easier said than done.

Three of months later, I was thrilled when the radiology report concluded the previous spot was gone. “Yup, it was contrast build up. It’s resolved, and everything looks good. Come back in a few months.”

And so I did, but this time, one of my symptoms had begun to reappearing and my blood tumor marker was crawling towards abnormal range. To my surprise, the scans were clear. “Come back in a few months.”

Eventually the uncertainty and anxiety became too much to bare. I decided to reach out to a specialist, who told me his hospital had a new, more precise diagnostic machine that would hopefully help us find the source of the symptoms and blood results. The scan uncovered microscopic tumors too small to show up on an MRI or CT. The news was bittersweet. Bad news: I had cancer. Good news: I now had a definitive answer and could move forward with a new treatment plan, which I executed faithfully over the next year.

I tolerated the new therapy well and it barely impacted my life. Those tiny tumors got even tinier and the blood tumor marker became normal again. At the end of the treatment, I was advised to have a precise scan again, so doctors could see the before and after. However, when I did, the radiology report indicated all the tumors were gone, except one that had progressed. My oncologist and I were both thoroughly confused and sent the images to the specialist for another opinion. His interpretation completely opposed that of radiology report – the disease had indeed shrunk and I was classified as a partial response. “Come back in a few months.”

Ever a faithful patient, I did and was happy to have all doctors agree that the disease continued to retreat. “Come back in six months.”

Navigating opposing interpretations of scans, watch-and-wait scenarios and living life in three-to-six-month increments are a few examples of the uncertainties cancer patients experience. It’s important for cancer muggles to know the true complexity of this disease and that many of us who have walked down cancer street are not always strolling on one side of the boulevard or the other. Sometimes we tread, with caution, down the middle of the road, unsure if we should be on the left or right side.

 

Read my other articles with Cure.

 

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No. 3 Can-Sur-Thrive

Welcome to a segment in my blog where I’ll share podcasts, books, videos, products, etc. that (I feel) help me not just survive, but thrive along this crazy road called life.

Words to Live by
This is old news, but worth sharing, watching or reading, everyday or when you’re having a bad day. It comes from Holly Butcher and, yes, it’s a little sad, but it’ll also give you a kick in the pants if you need one.

Here is a passage that captures the essence of the piece:

“Once you do that, get out there and take a freaking big breath of that fresh Aussie air deep in your lungs, look at how blue the sky is and how green the trees are; It is so beautiful. Think how lucky you are to be able to do just that – breathe.

You might have got caught in bad traffic today, or had a bad sleep because your beautiful babies kept you awake, or your hairdresser cut your hair too short. Your new fake nails might have got a chip, your boobs are too small, or you have cellulite on your arse and your belly is wobbling.

Let all that shit go.. I swear you will not be thinking of those things when it is your turn to go. It is all SO insignificant when you look at life as a whole.”

If you’re a reader, the entire Facebook post is here.

If you prefer to watch, an inspired YouTuber, created this beautiful video.

Until we meet again, Hol!

The Anatomy of Trust
Is there anything that comes out of Brene Brown’s mouth that doesn’t make me scream, “Amen,” in response? The answer, No. Not only did it have me think differently about my relationships, but created awareness of some of my own distrustful actions or words.

You can listen or watch the entire talk here.

Anti-Cancer books
A book for those who want to know what to do to prevent cancer… so, basically, everyone. My tumor twin recommended, “Anti-Cancer: A New Way of Life”. I have read many books on cancer, but this one is the most all-encompassing. I love that it does not discount traditional therapies such as chemo, surgery and radiation.  Instead it recommends lifestyle choices patients can adopt to compliment these treatments. Some of these things include upping your intake of Omega 3s, why “grass-fed” is so important, a list of specific chemicals to avoid, etc. Over the past few months, I have read a few pages each day. Then last month, a sequel came out titled, “Anti-Cancer Living”. Read carefully and a fellow NET cancer survivor makes an appearance in the new book.

The Immortal Life of Henrietta Lacks
Anyone ever impacted by cancer, AIDs, lupus or another life threatening disease would find this story interesting. Science-y stuff not your thing? No worries, it’s also a great story of a family and their quest for truth. Not a reader? Again, no worries. There’s a movie too.

Upright Go
I fell prey to an Instagram ad for Upright Go, a posture training device that vibrates when you slouch. I bought one instantly out of fear for becoming Quasimodo. I’ve also become motivated to stand straighter after my annual physical revealed I’d grown 3/4 inches since last year. Thank you, yoga.

 

Previous Can-Sur-Thrives:
No. 2
Charged: The Eduardo Garcia Story
Emily McDowell cards and gifts
10 Regrets Too Many People Will Have in 10 Years
Friends From College
Headspace

No. 1
Mitch Albom: The Dying Know the Secrets to a Good Life, Super Soul Podcast
Tony Robbins: Overcome Suffering and Live in a Beautiful State, Super Soul Podcast
Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandberg and Adam Grant
Soul Analyse
What Really Matters at the End of Life, TED Talk by BJ Miller

Journal of My 10-Day Silent Vipassana Meditation Course

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.