Intro to NETs

~Paola Palmieri

Have you ever Googled what the acronym NET stands for? There are over one hundred definitions! Interestingly, Neuroendocrine Tumors does not appear on the list. This sneaky bastard wants to remain unknown, unseen, and undetected. This is how it got me. For five or ten years, this son of a bitch was growing and multiplying inside me without warning. Until I caught it!

Allow me to tell you a little about me. I am a thriver, and like Alanis said (or was it Meredith?) I am bitch, I am lover, I am child, I am a mother…well, not much of a bitch and mostly a lover. I am also a 42-year-old cancer ninja living with stage 4 Neuroendocrine cancer. 

Before I was diagnosed, I was in my glory early motherhood years. My first son was four, and my second was one and a half. I was in a good place, having gotten over the newborn stage and learning how to handle two deliciously demanding, active toddlers.

 I used to think that taking care of both a toddler and a newborn was the hardest thing I had ever done. Now, I think it is the second hardest thing I’ve ever done. This epiphany occurred to me one day when I had to wipe my two-year-old’s dirty butt while breastfeeding the baby (he was literally attached to my boob). I had been reduced to an ass-wiping, milk-dispensing humanoid, but despite all the sleepless nights, tantrums, and nervous breakdowns, becoming a mother was the best thing that happened to me. 

So, there I was, sleeves rolled up and hands deep in the dirt, taking care of my two angels, my home, and working part-time teaching at a local college. It was natural that anything abnormal happening to my body was immediately dismissed. I did not have time to worry about my chronic diarrhea, abdominal pain, and random flushing.  All of these strange symptoms were thought to be due put down to the two c-section surgeries, lack of sleep, and anxiety I had been going through for the past four years. It never once crossed my mind that I had some uninvited guests colonizing my liver and wreaking havoc in my body. 

One day, when I thought I had it together, I made an appointment to see a GI doctor, and this is where the path to discovery started. The GI ordered a few tests and an ultrasound, and boom! There it was, showing its ugly face! 

It was June 1^st, 2017. After weeks of blood tests, scans, and biopsies, my husband, sister, and I faced the oncologist and heard the word “cancer.” This doctor had an interesting way of delivering the news, though. He said, “I have good news and bad news. Bad news is that it IS cancer. Good news is that you have the good cancer. It is stage 4 and incurable, but you are going to live a long time.” 

What the fuck is a “good cancer,” first of all?! That is the biggest oxymoron ever, but, man, I was happy to hear that! 

Second, there is nothing good about stage 4 incurable cancer, so what the hell was he talking about?! After going over the plan of action, I honestly left the hospital jumping up and down. I was the happiest newly diagnosed cancer patient ever. I almost felt bad I had it so good. 

The treatment seemed like a piece of cake, and I felt just fine despite a few symptoms that were totally manageable. Of course, it is never that easy. The first treatment was a liver embolization, which is a targeted therapy to debulk the tumor load in my liver. Thankfully, this treatment worked wonders, and my tumors were reduced by 50%. 

In addition to this, I also started my monthly injections of Lanreotide, a synthetic hormone that keeps tumors at bay and helps manage the symptoms. This is an ongoing therapy that will hopefully keep me stable for years to come.  

For me, knowing that I have advanced cancer, even though it is slow-growing and well-behaved for now, takes a toll on my mental and emotional well-being more so than physically. Thankfully, I am able to live a fully active life (with a few minor adjustments), take care of my family, work part-time, and enjoy life as much as I possibly can. 

The biggest challenge so far has been controlling my thoughts that, from time to time, divert to a dark place. I am working on focusing on the good things, which there are plenty of, and redirecting negative thoughts out of my mind. 

I like to think that, in essence, I am the same person I was pre-diagnosis. My dad told me once not to let what I was going through change my spirit, and I always think about those words. My father is a wise man disguised as a silly, friendly old teddy bear. From that moment, I knew I had to follow his advice and not let this stupid cancer change who I was for the worse. 

I consider myself an easy-going and caring individual with a great sense of humor. (This totally sounds like a dating ad!) I believe that I am still that person, but of course, this kind of wake-up call changes you in many ways. I am now more focused on the present, being kind, making the most out of what life brings, and helping others. 

I read a quote a while back that perfectly sums up how I have changed: “Cancer changes people. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly, and lives more passionately.” 

Watching the sunset or sunrise, kissing my boys good night, and even opening my eyes in the morning all have a different, more powerful meaning. I welcome each day with open arms, and I am grateful for the opportunities that have been given to me. So, bring it on, universe! What else you got for me because I am knocking all your curve balls out of the park!!

This is my story with Neuroendocrine Cancer. We have been knowingly living together for five years, and things are not so bad. We have gotten to know each other and decided we will play nice and not piss each other off.  However, if things were to change, it knows who the real boss of the house is, and even though I cannot evict it, I will make it very hard for it to cause more damage. 

Paola Palmieri is a language educator living in Miami Beach with her husband and two sons. She was diagnosed with stage 4 neuroendocrine cancer in 2017 at age 37. Since then, Paola has been involved with the AYA community with organizations such as Stupid Cancer and Elephants and Tea, whether writing articles, sharing her story in open mic events, or participating in talks or interviews, leading meet-ups, and just getting to know other fellow AYA’s. Paola’s passions include yoga, salsa dancing, reading, the beach, and raising her two wild little ones. You can connect to Paola on Facebook and Instagram.