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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Learning to Breathe

 

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.

 

 

Another Crazy Christmas in France

I love going to my in-laws in the French Loire Valley for Christmas, which is a sacred familial time for them.

This year getting out of Nashville was a bit exhausting due to all the normal get-out-of-town craziness and preparations for my last Peptide Receptor Radionuclide Therapy (PRRT) which is scheduled for this week (January 9-12). I’ve been feeling good, but I was definitely burning the candle at both ends. Even so, I was a little surprised that my therapy clearance blood work showed my red blood cells and platelets plummeted. Sure, it’s not unusual for this to happen and there’s a good chance I even sabotaged myself.

I’d been hearing so much hoopla around the ketogenic diet, including that it is good for cancer patients since it starves cancer cells of the glucose they need to grow.  BUT, as it turns out, guess what red blood cells need to reproduce? If you guessed glucose, then you are correct. Oopsy!

Fortunately, the counts were still well above the therapy minimums and gave me a self signed permission slip to reinstated carbs, which would’ve been an epic failure (and just all together wrong) in France and Italy anyways.

Enough cancer.

Flying to Paris and arriving was a shit show but no more than usual. Travel in Europe is a physical work out, but I was happy to arrive to my beloved village of St. Cyr en Val to be greeted by droves of family. Also, it was extra fun this year since my friend from Nashville joined to experience a French Christmas.

We spent the first few days getting adjusted to the time, visiting Chateau de Chambord and locating a few Camino shells throughout Orleans, a potential stop for those walking to Santiago from Paris.

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In the hot seat!

Christmas Eve was the big event! This is when 50 of my crazy french in-laws drink oodles of champagne, sing, dance and eat platters of oysters.  This year the chaos was amplified by a photo booth, introducing them to white elephant/dirty santa and CLR….until 4am. It was really fun and I can officially say that I am completely acclimated (it only took nine years). We even ventured off to midnight mass where Father Jean-Baptiste called me to the pew for a little interview. I was throughly embarrassed, but also touched since I know he prays for my health often. Last year he blessed me and this year he expressed excitement about my trip to Rome to see his boss, Pope Francis.

The following days after Christmas Eve shenanigans were filled with gifts and visits and food and drinks and naps. I was tired and my brain hurt from french but I think it was my favorite Christmas in a long time.

On the 27th, we were off to Paris for a couple of days. Day one was spent walking around Galerie Lafayette, seeing the sights on a Bateaux Mouche, a comedy show and a long, late dinner at a tapas restaurant. My Nashville friend also had a great time with the exception of the last night where she was hit with food poisoning and spent the whole night sick. With her night reminding me of the months I spent laying on the bathroom floor I felt so bad for her having to travel all day feeling like that. Fortunately, I don’t leave home without  a couple Zofran, which helped her make it home after a looooooong hard day.

img_5268As she soldiered through, my husband and I got to experience something really special at the Paris Zoo. His cousin is the giraffe keeper and invited us for a private visit with her 15 giraffes. We got to feed and pet them and take pictures. It was incredible and it took everything I had not to steal one. With the day spent fawning over giraffes, we walked around the Champs Elysées and met an old friend for dinner. We haven’t seen him in seven years and wow a lot has happened and changed. Satisfied with a wonderful time in France, we went back to our friends tiny apartment for a long sleep before jetting off to Italy in the morning.

Cheers to many more Christmas celebrations in the Loire Valley!

See…they cray!