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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What I Know for Sure about My Survivorship

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I wrote this piece for the Neuroendocrine Tumor Research Foundation’s June Survivorship Issue. Click here for the full eUpdate on topics including research, finding a NET specialist, living with NETs and more. Thank you to NETRF for the important work they do.

Every Sunday on the O Network’s Super Soul Sunday, Oprah asks her guest, “What do you know for sure?” This question has stayed with me and my answers stem from my diagnosis of a pancreatic neuroendocrine tumor in 2014.

However, before diving in, it’s important I preface this post by declaring that being diagnosed with a Neuroendocrine Tumor is  awful. The pain and suffering proceeding this disease is real. I do not want to discount anyone’s experience, so please know that I see you and all of us impacted by this disease see you.

What I know for sure is that cancer will be the greatest teacher of my life. The lessons are vast, innumerable and constantly evolving. Those that come to the top of my mind are resilience, perseverance, humility, strength, letting go, being uncomfortable, grateful, mindful, kind and compassionate. I’m sure I would have eventually learned all of these things, but cancer gave me a crash course and I am better person for it.

I know in the extensive world of cancer, I’ve got it pretty good. A slow-growing disease, where patients are living decades. And not just living long – many are living well. I know NET survivors who have accomplished some incredible physical feats – marathons, triathlons, cross-country hikes, 100-mile bike rides, scuba diving, to name a few. I know it’s not all sunshine and rainbows, but I could see where other cancers and diseases could be envious.

I know this statement may ruffle some feathers, but I’m happy I don’t look sick. I would rather be sick, without looking sick, than be sick and look sick.

I know my doctor is the right person to lead my care team. With only a handful of true specialists, choosing a doctor isn’t too difficult. Other cancers have hundreds, if not thousands of specialists, which I would find overwhelming. With our small NETs community, it’s easy to know whether you’re in the right hands or not.

I know who my friends are and are not. Those who stood by my side are true, loving, genuine, caring people. They are the kind of humSians I want in my life. I also know what a surprise it was to develop new friendships with fellow survivors with whom I share an indescribable kinship.

And what I know for sure is that every sunrise, new moon, holiday, birthday, etc. is a gift. This is true for all of us – cancer or not, but living with NETs – I know it and I live it, everyday.

 

Days of Distraction

Life has been brimming with buckets of happiness and busyness, which has been a welcomed distraction from my April tests, scheduled three months after my last PRRT in Houston at Excel Diagnostics.

Upon returning from The ENETs conference in Spain, we started remodeling our kitchen and sprucing up our living-room. It was a time-consuming, but fun project. We are still searching for a few furnishings, art and appliances, but so far, it looks pretty good.

 

In the midst of remodeling, a talented filmmaker (and now, friend) flew to Nashville to shoot a short film on me for the Carcinoid Cancer Foundation’s 50th anniversary. I am one of several featured patients in a series called “Fit to Fight”. The film will highlight my yoga practice and the lessons I’ve learned along this crazy path. It’ll be out this month and, of course, I will share it here.

8f181893-3f5c-40a8-b76b-525932a99139IMG_0086Two days after the remodel wrapped, my dear friend Christine and I joined forces on a cute, cuddly project. Ever since our beloved German Shepherd, Bear, passed away in 2016, I have been pining for another dog. I’ve hesitated because dogs are a big commitment. Enter an organization called Retrieving Independence. They train service dogs in a local prison for people with disabilities. Originally I signed up for their furlough program, which would give me a dog twice a month to expose them to experiences they can’t receive in the prison. BUT then a big litter of puppies was born and the organization was searching for puppy raisers. Without much thought, my hand shot up. A few weeks later, I had a sweet puppy named Sadie in my arms. She’ll be split between my house and Christi’s, who happily joined us in this venture. Our main responsibilities are to potty train, socialize and just let her be a puppy for the next two months until she turns 16 weeks and heads off to Turney Correctional Facility. From there we’ll get her on furlough until she’s 18 months and is (hopefully) a service dog matched with someone who really needs her. Am I worried about getting attached? Sure, but I also feel good about having a role her changing someone’s life. In the meantime, I am soaking up the puppy snuggles. If you need more Sadie (and let’s face it, you do), click here for her photo stream.

So, you see – much goodness to distract us from my upcoming tests in Houston, but eventually the days came and there was no more avoiding it.

The bad news…  even after stuffing myself full of anemia fighting foods, my red blood cells and platelets barely budged compared to February’s check-in.

The good news… my white blood cells moved back into normal territory.

The annoying news… I did not get the most revealing scan, called a Gallium-68 because hours before my appointment, the machine broke. So, I still have to do that in Nashville.

The great news… the blood tumor marker is in normal territory and the MRI and CT scans showed that tumors continue to shrink. Woot woot! The team of doctors in Houston were so encouraged that they released me to my local oncologist for follow-up.

I can’t say the shrinkage news was surprising. I know my body well enough after years of this to know when something is up. And even with low blood counts, I’ve been feeling great and full of energy. In a premeditated stroke of confidence, Fabien and I planned to leave for nine days of fun in the Costa Rican sun. Having our healthy suspicions confirmed, it was incredible switching into vacation mode with the only weight on our shoulders being backpacks.

Read more about my journey with PRRT here.