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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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.

 

PRRT Diary #4: Finally

We arrived home from a wonderful couple weeks in Europe late January 3rd. I was eager to jump back into my daily routine of yoga, writing and freelance projects, however, before I could unpack my suitcase and enjoy sleeping in my own bed, it was time to leave for my last PRRT in Houston on January 8th.

I sat on the plane in disbelief I was traveling again, let alone to cancer treatment – I’m four years in and wondering when the shock will dissipate. That and the fact that Donald Trump is President are the two things I still can’t wrap my brain around sometime. But, I put my big girl panties on and hopped to it.

Wednesday morning I walked to Excel Diagnostics for a check-up and scans of my abdomen, chest and kidneys. I hate these days not just because of the obvious, but also because these tests require I fast. Also, I’m pumped full of contrast fluid that leaves me dehydrated and with a yucky taste in my mouth. This time took extra long because the staff at local oncologists office could not access my port. After two unsuccessful stabs in the chest, they sent me to the interventional radiologist in the building because, in their opinion, the port had flipped. This angered me because, I’ve had my port for two and a half years without having a problem getting it accessed anywhere…except their office. It’s a bit unusual for a Neuroendocrine Tumor patient to have a port, but I got mine due to terrible, tiny, magically disappearing veins. Pre-port a simple blood draw usually meant 4-5 sticks, leaving me traumatized so the port has been a handy tool for someone who gets frequent blood draws. Back at the interventional radiologist’s office, they had me disrobe and hooked me up to an ultrasound machine where I was stabbed two more times in the chest. The fourth unsuccessful access left me in tears prompting them to numb me with lidocaine. Attempt five was successful and their ultrasound machine confirmed the port did not flip making the two-hour long traumatic process completely unnecessary, in addition to making me late for the rest of my appointments. And have I mentioned that I’m not allowed to eat until all the scans are complete? That didn’t happen until 2pm and hangry was an understatement. Fortunately, my husband had lunch hot and ready for my arrival back at the hotel. Smart man.

Thursday was therapy day, which did bring on some manageable nausea. This was easier to deal with after Dr. Ali explained my scans are continuing to show shrinkage. Woot! Woot! I haven’t calculated the percentages, but the doctors are thrilled with my response. He explained the next step would be to return in three months for a Gallium-68 scan.  The hope is that the medicine will continue to shrink the tumors even after I’ve concluded the therapy. They have seen shrinkage in patients up to a year, post-therapy. Basically, keep the prayers and good vibes coming my way as I move into this period where I’m no longer taking pro-active steps against the disease, which can be unsettling.

Friday, we returned to Excel Diagnostics for one last test to confirm the medicine is in place. I also nerded out with Dr. Ali about a new clinical trial they announced that week called Targeted Alpha Therapy. He described it as similar to PRRT, but instead of breaking down the cancer cell piece by piece, the radioisotope destroys the entire cell – at least it has in the animal tests researchers have conducted. The trial is in phase one where the goal is to find the appropriate dosage. Currently, it is not open to those who have received PRRT, but they hope to explore this in later phases. So, if you are a NET patient and interested in learning more, shoot me a message and I’ll share the contact information of the Excel Diagnostics Therapy Coordinator.

By mid-morning, we were on our way to the airport and hoping our flight would land as scheduled due to the snow and ice storm hitting Nashville that afternoon. Fortunately, all went as planned and we were home in our jammies by the late afternoon watching a rare, Nashville snow fall through the windows of our bonus room.

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The USAs cutest new citizen

I confess, the following days were filled with lingering nausea, Netflix binges and many, many naps. The only interruptions to this schedule were a trip to Vanderbilt for my Lanreotide injection and a long-awaited court date where my husband (finally) became a naturalized US citizen.

It may have been the accumulation of traveling with the therapy, but this last treatment took more recovery time that numbers two and three. As usual, I powered through and found myself back on my yoga mat, kicking ass by post-therapy day number ten.

Two weeks and one day after my final PRRT, the FDA (finally) approved this treatment, which is a huge milestone for the Neuroendocrine Tumor community. I had anticipated this day after my contact at the FDA reached out last fall searching for my input since I am the NET Patient Representative. Unfortunately, because I was currently undergoing the treatment, I was deemed to have a conflicting interest and therefore not permitted to participate in the approval hearing. Oh well. I am thrilled that more patients will now have access to this therapy without having to travel across the world or country and that insurance companies should (hopefully) begin covering the cost.

With my health back on track, I figure it was time to do something special for myself. This post has been pre-scheduled because from January 31st – February 11th I am off to a Vipassana meditation course in Jesup, Georgia where I’ll be meditating for ten days, 11+ hours a day, with no talking or distractions such as books, journals or smart phones. I know – I must be crazy?!?! I first learned of this meditation technique during my yoga teacher training in the summer of 2016. However, since then, my meditation practice has been sporadic and inconsistent, at best. I know I should do it, but always find an excuse not to. I’m trying not to enter the experience with too many expectations, but my intentions are to (1) make myself mentally stronger, (2) release repressed stress that is disserving my body and (3) detox from my technology addiction. BUT, we’ll see what happens and I look forward to sharing my experience and insights with you. To learn more about Vipassana meditation, click here.