4 Years Since Diagnosis

September 1st, 2018 marked four years since I was diagnosed with a Pancreatic Neuroendocrine Tumor.

It was Labor Day weekend 2014 and I found myself in the hospital for the third time in two weeks. Originally sent home with discharge papers listing my diagnosis as, “superbug” (seriously) with instructions that I should drink plenty of fluids and rest. The next day, I felt just as terrible and returned to the emergency room. When they took my blood, my potassium was so low doctors were shocked I had not gone into cardiac arrest. I was admitted and told they would do a CT scan in the morning. I had no idea what a CT scan was or that it’s often used to find tumors. Seconds after returning to returning from the scan, a doctor rushed into my room. “You have a mass on your pancreas, but I don’t think it’s pancreatic cancer. I think it’s something called a Neuroendocrine Tumor that’s producing vasoactive intestinal peptide, but in order to confirm this, we need to transfer you to another hospital where they can do a biopsy.” And the ride began…

In retrospect, I should probably call this doctor and thank him. He hit the nail on the head, down to the one and ten million diagnosis that was, most likely, given a 30 second explanation in a medical school lecture hall decades ago.

Days later as the suspicion was confirmed, a surgeon gave me an (old) research paper titled, “A Needle in the Haystack,” where I read the 5-year survival rate was 50%. While I think this statistic is quite dated, I can’t help but take some pride in the fact that I’m closing in on the positive side of that prognosis. Actually, I’m probably already there given my suspicion that I had the disease a few years before diagnosis.

So, it seems like a good time for an update.

July marked six months post-therapy and usually where I’m told, “It looks like there might be a little something regrowing,” or, “Your tumor marker is slightly elevated,” or, when symptoms start to reappear.

Six months is also the check-point where PRRT is deemed a failure or success. If declared successful, I could be eligible for more of the same therapy in the future, should a need occur.

I walked through these past months distracting myself with a new puppy, going to yoga daily, overbooking my schedule and when I wasn’t sprinting through tasks, telling myself that I was okay and trying not to freak the fuck out. I felt good, but I couldn’t help but brace myself for a routine impact.

I had my exams and fled to California for a week until my results appointment. I tried to forget my fate was sitting in the online records portal. When I returned home from California, I couldn’t take the torturous wait anymore.

The report said stable, but I didn’t believe it. I referred to my spreadsheet where I was tracking tumor measurements. Yes, I have a spreadsheet. I completed my own analysis (as if I have any training to read MRIs) and prepared some challenging questions for my doctor.

He walked into the exam room and cut right to the chase like I knew he would, “Well, your scans look good.” I presented my questions. He answered them. I asked about my blood tumor marker. He replied that it was normal. I asked him to review my images at tumor board just to be sure. He said he would, but there wasn’t much to review or debate. He advised me to come back in four months, a luxury I’ve never experienced. Before I left the appointment, I got a copy of the disc to send off to my doctors in Houston. They agreed that all was well and recommended my next scans take place in six months.

This is all good news and yet, I’m processing it like neutral news. I want to believe it, but it’s hard. What do you mean I can go and life my life for the next six months without so much as an MRI, CT or PET Scan?  It is a strange and welcomed feeling.

So, I guess I’ll do just that – live, as much as I can. This means, more writing, more yoga, more pumpkin spice lattes, more travels (direction South America), more puppies, more, more, more.

 

The morning of September 1st, 2018 was very different compared to 2014:

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Sadie’s Playbook

riThis piece was featured in Retrieving Independence’s July Volunteer spotlight. In my short time as a volunteer for this organization, it and Sadie have already done so much for me. If you’re interested in learning more about them, volunteering (ie, raising a puppy or having a dog for a weekend) or contributing financially to their cause, check out their website

Earlier this year, my husband and I decided to remodel our kitchen.  As a friendly contractor measured our cabinets, he casually asked if we had any pets.  I explained the sad story, that all animal lovers inevitably experience. We had lost our beloved 15-year-old German Shepherd, Bear, in 2016 and had not been able to wrap our heads around another (at least) decade long commitment. The contractor then began telling me about an organization his daughter volunteers with called, Retrieving Independence. Immediately my interest was ignited.

Within the week I visited the Retrieving Independence website, followed them on social media and submitted my application to become a Furlough Volunteer. After exchanging a few emails, I was asked if I might be interested in raising one of the nine puppies from Bella’s litter. Before I had a chance to think, my heart screamed, “YES” and a few weeks later, my husband and I drove away from the Farm at Natchez Trace with a sweet little pup in my arms named Sadie.

sadie-header-crop

Sweet Sadie

Over the next two months of puppy raising Sadie, she taught me much more than I taught her.  Sadie tackles each day, outing, encounter and task with so much joy and enthusiasm. She wants to be friends with everyone. I admire her ability to both follow her intuition and sometimes be fearless when facing uncertainty. Sadie enjoys food and eats without worrying about getting fat.  She sleeps when she’s tired – typically rising and resting with the sun. Sadie is comfortable with stillness and doesn’t always feel the need to go-go-go. She lives in the present, forgives easily and loves fully. We could all take a few lessons from Sadie’s playbook.

Putting her on the bus to start her training at Turney Correctional Facility on June 12th was bittersweet. Naturally, I was sad to see her go, but knew she was ready to begin the next chapter. In honor of her departure, I decided to hold a Facebook fundraiser and with the generous contributions of friends and family, we raised nearly $700 for Retrieving Independence.

sadieBetween our furlough weekends, I miss her, but take much solace knowing that she is in the process of spreading her playbook teachings to her trainers and future recipient.

 

 

 

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