Summertime will always put me in a reflective state. It seems to be my season of challenge, transition and transformation after being diagnosed with a Pancreatic Neuroendocrine Tumor in 2014.
This time last year, I was deep into my 30-day, 200 hour yoga teacher training “intensive”, which is the most accurate description of the experience. I have never pushed myself more physically, mentally, spiritually and emotionally. I cried therapeutic tears everyday and was surprised how much unresolved trauma I had stored in my body because of cancer. It was the best gift I have given myself and I graduated the program with so much more than a deeper understanding of the physical practice.
One of the many concepts that resonated with me during the 30 days was the Seven Axioms of Teacher Training. Over the last year, as I’ve continued to ride the rollercoaster of illness, these universal truths have been comforting reminders.
You’re exactly where you’re suppose to be. This is a hard one to accept when an illness is involved. When I was sick, if someone said this to me, I probably would’ve punched them in the face, but now, I get it. I would give back cancer in a nano-second, but that means I would also have to give back the meaningful friendships I’ve created, the completion of the El Camino de Santiago, yoga teacher training, my career as a writer, my role at the FDA, my thirst for adventure, etcetera. All these wonderful things are a result of cancer. So, am I exactly where I’m suppose to be? Unfortunately and fortunately, yes.
Fear and pain are life’s greatest teachers. Do I need to say anything more? I have learned so much from illness because it has brought on fear and pain I never realize existed and through that same fear and pain, I have learned how to live and not just exist. Cancer has taught me that I am so very strong, resilient and courageous, a word that makes me roll my eyes. I have been able to do things I never thought I’d be able to do because of cancer. For instance, before cancer I coward at the idea of needles. Now, I could give myself an injection while climbing a mountain at the same time. Cancer has also taught me deep compassion for my fellow humans. Others are often shocked when I tell them how the disease has impacted my life because I look like a normal, healthy, 37-year-old. This is proof we never know what others have going on based on outward appearances and for that, I am kinder to people.
Laughter and play are the fountains of youth. I find nothing fun about cancer. I often say it is the opposite of fun. But, I think within the non-fun, it is important to keep laughing and retain a childlike sense of play. In moments where it’s too hard to keep things light, call for backup. My husband is a major source of keeping me laughing and has succeed to make me smile in dark moments. When he’s not around, I watch YouTube and am surprised how much time I can spend watching puppy videos.
Exercise and rest are the keys to vibrant health. We all know this, yet, so many of us ignore it. Before cancer, I exercised like crazy, at the expense of sleep. I believe, sleep deprivation was a contributing factor to my diagnosis. Now, I make sure I get at least eight hours and move my body every day. I wouldn’t describe myself as having vibrant health, but I would say I am more fit that the average person, which has been one of my secrets to managing a chronic illness.
Touch and intimacy are basic human needs. We’ve all seen the study about babies who do not thrive when they are not touched and cuddled, yet, as we grow older, we assume that need dwindles. If you’re unwell, you should double-up the hugs and love.
Everything is impermanent. For me, this is the most powerful axiom. It’s context is that everything is temporary. We all walk around with an illusion of control, which is not the case. When you look deeply, you will see that there are no guarantees. Health is temporary. Sickness is temporary. Happiness is temporary. Sadness is temporary. One of the reasons loss of anything is so hard to accept is because we do not expect change. We want our lives to continue on without any uncomfortable interruption. And when the interruption occurs, we are surprised and hurt. Accepting that everything is impermanent has given me great comfort. It has made the natural ups and downs easier to accept. And most important, it has taught me to live each day as if tomorrow is not guaranteed, because it is not.
Everything is connected. I vividly remember the days and weeks after surgeries and chemotherapy concluded. I felt this euphoric connection to everyone and everything down to the core of my bones. Perhaps it was a high level of relief, trauma or PTSD, but I was so happy to be alive and enthralled with everything. I would go for a walk in my neighborhood and notice the tiniest, most beautiful things I never realized were there. I’d often come home with tears streaming down my face and my husband looking at me as if I’d lost my marbles. Everything seemed magical. While some of the feeling has faded, the memories remain evidence that we are all connected to everyone and everything whether we notice it or not.
Whether you are impacted by cancer, another illness or life challenge, I hope these axioms give you the same pause, solace and perspective they have for me.
First – sorry for the long post. If you don’t have time to read, here’s the cliff notes on how I’m doing…Treatment went great and I’m feeling good. (:
Now – if you’ve got time and are interested, the details of my first experience with Peptide Receptor Radionuclide Therapy (PRRT) are below. I’ve tried to provide as much detail for other NET patients with a potential investment in this up and coming therapy.
I’m always surprised at how much coordinating there is with cancer. It is a full-time job sometimes and I feel for those who don’t have the time, energy or know-how to navigate it successfully. Fortunately, I was born with persistence in my DNA. Here’s a journal of the steps it took to get to Peptide Receptor Radionuclide Therapy, the week of treatment and the week after. Consider this a glimpse into the life of someone living with a chronic illness.
Before I start that, I’ll share this video showing how PRRT targets cancer cells:
Pretty cool, huh?!?!
5/23/17 – Referred
After I got the results of my Ga-68 and my specialist recommended PRRT, he made the referral call to Excel Diagnostics while I was sitting in front of him which I was happy since I know how many directions he’ll be pulled once he leaves my vision. The Therapy Coordinator at Excel Diagnostics is Susan Cork and she immediately sent me an email indicating the documents and images I would need to be considered. This included:
Surgical pathology report that diagnosed NET or Carcinoid
Diagnostic reports from the last six months
Last Octreoscan report and images
Last Ga-68 PET/CT report and images
Most recent lab results
Last consultation report from the referring physician
Last four office visit notes from current oncologist
Current medication list
Contact information and copy of front and back of insurance card
New patient questionnaire
5/25/17 – Applying
I arrived home from New York City, gathered the remaining documents from my local oncologist, emailed the entire package to Susan and overnighted the image discs, which she confirmed receipt a couple of days later and indicated I should have a response by June 7th.
6/1/17 – Last Lanreotide
I was scheduled at Vanderbilt University Medical Center for my monthly Lanreotide injection. I debated on whether I should go since I knew there was a 6-week waiting period for PRRT once I received Lanreotide. But I figured I should and I did. If you’re curious about that process, click here.
6/9/17 – Accepted
I had not heard back from Excel Diagnostics and did not want to go into the weekend without hearing something, so I called Susan, who indicated I was eligible for treatment, but that she had not gotten a chance to get back with me. While I had her attention, she answered some questions and scheduled my first treatment. It was a relief to finally have a date. She said I would receive an email with lab orders and a prescription for Emend that I could take on my therapy day to help with nausea.
6/12/17 – Officially Accepted
I received the lab order and Emend prescription along with important dates to be aware of before my therapy (ie, payment due, lab deadlines, etc.)
6/13/17 – Schedule Appointment with Local Oncologist
I scheduled an appointment with my local oncologist to discuss the lab order and additional prescriptions I would need (ie, short acting Octreotide).
6/14/17 – Appointment with Local Oncologist
For the first time ever, Vanderbilt University Medical Center (VUMC) got me in fast. I met with my local oncologist, Dr. Berlin, and he was “excited” (this word again) about me undergoing PRRT. We discussed his involvement in the NETTER-1 clinical trial and scheduled the lab orders, which included:
Comprehensive Metabolic Panel with Glomerular Filtration Rate, Estimated (eGFR)
CBC with differentials and platelets
Chromogranin A
Pancreatic Polypeptide
Serotonin Whole blood or serum
I was a little concerned they didn’t ast for a Vasoactive Intestinal Peptide reading because that is the most sensitive indicator for me. BUT, Dr. Berlin knows that, so he went ahead and threw that in for good measure.
Then he calculated the dosage for short acting Octreotide injections, which he recommended I start taking 6/30 when my Lanreotide runs out.
A beautiful day at Cummins Falls
6/26-6/29/17 – Family Visit
My brother and nephew arrived and brought a much welcomed distraction to the road ahead. We spent the days going to the pool, racing go-karts, hiking, having water balloon fights, going to Cummins Falls and trying to convince my nephew to eat something other than Dinosaur Chicken Nuggets.
6/29/17 – Labs
I woke up early and headed to VUMC to get my labs. Per Excel’s instructions the blood needed to be drawn today, two weeks before therapy to green light treatment. Once those are cleared, they order the expensive, fancy, unapproved radioisotope to be injected into my body.
6/30/17 – Start Short Acting Octreotide Injections
Started short acting Octreotide injections. I can’t say I was too excited about giving myself a shot three times a day, but I’ll take that over the intestinal distress associated with Neuroendocrine Tumors any day. Before cancer, I couldn’t even get a flu shot without a major meltdown. The fact that I can now give myself an injection is proof that sometimes you just gotta do what you gotta do and it’s fine.
7/6/17 – Payment
Called in my $7,998 payment, which I put on my United MileagePlus credit card. On our next trip to Houston we’ll use all our miles to pay for the flights and hotels.
7/6/17 – 7/8/17 – Climb a Mountain
Drive to the Smokies with my husband and friend (and fellow cancer survivor), who I met in the Vanderbilt Creative Writing Workshop. We met 10 others at a cabin close to the National Park to hike the tallest mountain in Tennessee and stay at the Mount LeConte Lodge. Even though I was off the grid, I was very happy to arrive back to civilization and find an email from Amber Gonzalez at Excel Diagnostics detailing my schedule for the week. The full story of the hike is here.
7/9/17 – Arrive in Houston
Fly to Houston and lay out at the pool all day for a much deserved rest day. We decided to get a room at the Residence Inn Westchase. It was a little more expensive than standard hotel rooms, but there was a separate bedroom, which I thought would be nice if I wanted to nap while my husband worked. Also, once I received the treatment, we would have to sleep in separate beds for three nights to minimize any radiation exposure to him.
7/10/17 – Day 1 Tests
Walked 15 minutes from the Residence Inn to Excel Diagnostics for a MRI and renal scan to measure the filtration rate of my kidney’s. The renal scan came with a bit of drama after they wanted me to take a pregnancy test. The first two indicated a symbol that didn’t match one of the two possibilities. Perhaps I would be the first human to be pregnant with a kitten? In a dramatic conclusion, he third test confirmed I was not with child (or kitten). I walked back to the hotel in the Houston heat just in time for lunch. I was instructed to not eat any sugar or carbs for dinner that could possibly impact the next day’s PET/CT scan. That evening, we Uber-ed over to the massive Galleria shopping mall for dinner and then walked to the Waterwall, where I serenaded Fabien with a new version of Oasis’s “Wonderwall”. “And after all, you’re my water wall….”
7/11/17 – Day 2 Tests
Walked to the clinic again for a PET/CT scan where they measure the glucose concentrations. They did this by injecting of something (getting a little tired of keeping track at this point), waiting an hour, then scanning for 30 minutes. Then I got a chest CT with and without contrast, which only takes a few minutes. Done for the day. Walked back to the hotel for lunch and then to a nearby nail salon. Can’t be going into radiation with skanky toes and fingernails.
7/12/17 – Meetings & Stop Octreotide
Met with Dr. Armaghany, a very nice oncologist at Westchase Clinical Associates. She indicated that she would be my oncologist should I need anything while I’m in Houston. After lunch we watched an informational video from Dr. Deplassand and then met with him and two others doctors. They reviewed the results of the tests. Fortunately, there was nothing new, no tumor growth compared to my previous images. They also called me a robust candidate based on my tumor burden, blood profile and fitness. We then met with the Therapy Coordinators, Amber & Susan to schedule my next treatment, which will be 8/31 (conveniently scheduled before the price increase of $9,750 that occurs 9/1). We were a little bummed since this was the first we were hearing of the increase, but what’s another few thousand dollars at this point. That night, we met my old neighbor Barb for dinner, which was a welcomed distraction. This was also the day I was instructed to stop the three times daily Octreotide injections. There was a little debate over this after a friend getting treatment in Basel indicated injections should stop 72 hours before treatment, but Excel Diagnostics says 24 hours. Dr. Berlin indicated 24 hours is sufficient based on the fact that Octreotide has a life of 16 hours. Evidence if you ask 10 doctors the same question, you’ll get 7 different answers.
7/13/13 – Treatment Day
I arrived at 9am and they quickly brought me to the treatment suite. Another doctor appeared and we talked about nausea management. A hot topic for me since I am so prone. They started an IV of a steroid and Zofran and gave me a pill of Compazine. I also took the Emend prescription before arriving at the clinic. And guess what? I still got nauseous. It didn’t start until an hour after the amino acid drip began, but it came in waves and lasted until the amino acids were done (about 3 hours). The actual treatment was run for 30 minutes and was run with the amino acids 30 minutes after those started. Eventually, I fell asleep and that helped with the nausea. Fortunately, I was able to keep everything in. Before leaving, the nurse reviewed the safety precautions. I went and had my port de-accessed and we called the hotel shuttle to come pick us up. By 3:30, I was napping in my room. I woke up starving – thank you steroids. With radiation safety procedures went into effect, Fabien slept on the couch bed, I triple flushed the toilet, washed my hands faithfully and kept six feet away from people for 48 hours. The rule extends to 6 days for pregnant women and children.
7/14/17 – Last Test
Arrived back at Excel for a follow-up PET/CT, which showed the medication is exactly where it’s suppose to be. Yay! Three cheers for modern medicine. By 9:30 I was back at the Residence Inn lounging at the pool. I took a nap in the afternoon and then we went Downtown for a nice dinner and walk to Eleanor Tinsley park to watch the sunset on this trip to Houston. I did have some lingering nausea, so I took an Emend in the morning. It did linger most of the day, but was not life affecting. My only symptom, facial flushing, pretty much vanished. Magic!
7/15/17 – Home
Hooray for sleeping in until 8am. We had a leisurely morning of breakfast, laying at the pool, doing some laundry and packing up for our 2:50 flight, which was delayed five hours due to storms. I splurged on a blanket and pillow and caught up on some sleep. I had to move several times in the airport and on the plane since I seemed to be a magnet for pregnant women, babies and children.
Since arriving home, I’ve been doing pretty good. The morning queasiness lingered for about five days. I had one night where I threw-up, which was rough. Once that past, I did have some uncomfortable digestion. However, I’m happy to report that today is the first day I feel like my normal self again.
Our next trip to Houston is scheduled for 8/31 and we are planning on hitting up Galveston the weekend before for a little beach time. This 2nd trip will be shorter since I won’t have to complete the massive amount of baseline testing.
For those of you interested in the finances, shoot me a message and I’d be happy to share a breakdown of everything. Note, we did not rent a car and took the shuttle or Uber pretty much everywhere we wanted to go and it worked out just fine. And because our room had a kitchen, we made many meals and saved money by not eating out.
Prayers for insurance are welcomed and accepted. Also, THANK YOU for the good vibes during the past few weeks.
In his book “Information Anxiety” (1989), Richard Wurman claims that the weekday edition of The New York Times contains more information than the average person in 17th-century England was likely to come across in a lifetime. I am curious how that statement would change given the speed of information and life in 2017. Of course, I am so grateful for the significant impact this surge of information has created in the cancer world. However, the biggest downside of the increased velocity is a world with so much noise. Add cancer to this equation and it’s no wonder anxiety accompanies the disease.
Gandhi said, “There’s more to life than increasing it’s speed,” and it took a cancer diagnosis in September 2014 for me to understand the meaning of this quote. Information overload and busyness has become a chronic disease in our society. It seems as though everyone wants to move through life as fast as possible and news pours on us before we can formulate our own thoughts. I think it’s quite sad. None of us will be on our deathbed wishing we moved through this world more rapidly. Everybody and everything wants our time and attention, which are two of the most precious commodities for a cancer survivor.
Illness did not just force me to slow down – there was a chunk of time where it pretty much stopped me in my tracks. I went from endurance athlete to bed ridden in a matter of months, which was humbling and an experience filled with valuable lessons. As a result, I learned that the slower I go, the more I can actually accomplish well. Slowing down allows me to live with quality, in the moment. And most importantly, decreasing my pace has made me acutely aware of the outside noise that distracts us from the life’s most important things, which aren’t things at all. They are our relationships and health.
I am very fortunate that I did not have (or want) to jump back into a busy life after going through active treatment. My life gives me the option to say, “no,” which I do often. When I’m in a particularly noisy period, I don’t just slow down the intake of information and activities, but do my best to pause all together in order to put all my time and attention into my personal self-care. I give myself the time and space to do my favorite things which include writing, yoga, reading, sleeping 8-9 hours, taking naps, meditating daily, writing my prayer and gratitude list, taking walks (gasp) without a device and reduce my time on the internet.
Whether you’re a cancer survivor or not, EVERYONE could benefit from slowing down, pausing and reducing the noise to enjoy the only guarantee any of us have, which is the present moment we are in.
7/10/17 – Day 1 Tests
Stacie Chevrier 