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.

 

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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.

PRRT Diary #3: Magic

My blog has been quiet lately. I’ve been working on other projects and enjoying fall, which I haven’t been able to do in years because of surgeries. The fun, productive days sailed by and before I could get my fill of pumpkin spice everything, it was time for my 3rd Peptide Receptor Radionuclide Therapy (PRRT).

My pre-tests revealed normal blood counts, a falling tumor marker and no need for short acting octreotide injections. Smiles all around. Therefore, the husband and I decided a weekend of fun was in order before a week of not-fun.

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IDK, but I hardly look like a cancer patient, no?

With a late arrival in Austin, followed by a long night of sleep, we ventured downtown Saturday morning for breakfast, a walk to the Texas State capitol and a city Duck Tour. Disclaimer: we’ve never done one of these cheesey tours and I can say with 200% certainty that we never will again. OMG – it was awful. First, it was so damn cold. Second, we didn’t learn anything about the city. Third, the guide’s jokes were not funny. Fourth, they gave everyone duck kazoos, including the kid behind me who has permanently impacted my ability to hear from my left ear. Lesson learned. Newly impaired hearing aside, afterwards, we hit up a local recommended food truck (Torchys) for tacos and they did not disappoint. In fact, I think they were the best I’ve ever had and I am serious AF about tacos. The rest of the day was spent walking around South Congress and 6th Street enjoying the Halloween costumes.

Sunday was warmer and a picture perfect fall day. We rented bikes and rode around the city for hours stopping only for an hour long kayak adventure on Lady Bird Lake. In the evening we ventured outside our comfort zone to a Haunted House, which was good fun.

The following morning we took the Megabus to Houston – queue the jeers and boos.

Early Tuesday I reported to Excel Diagnostics for a full poking (port access), scanning (MRI, PET and Chest CT) and starvation test (I think exit pizza should be legally mandated if you’re forced to fast for anything over 4 hours). I even had to return Wednesday morning for a renal test.

I have to be honest – I was kind of a basket case. These tests were more lengthy than usual because my doctors thought we should do a halfway check-in. While I waited for the results my mind filled with all the worst case scenarios. Fortunately, my husband is very good at talking me off the ledge. But still, scanxiety is a real, tangible thing, people.

Wednesday afternoon we returned for the results. And with much excitement, my doctors shared that I’m tracking at 20% shrinkage. BUT, I re-did their math and it’s actually 22%, so I’m taking the Goddamn extra 2%.

Let me emphasize something, because I understand why some of you might not be impressed with 22% at the half way point – THIS IS HUGE. Medicine has never done anything but stabilize me in the past. Surgery has always been most effective on me, so it feels incredible to have found something that works and doesn’t result in cutting me open.

Later Wednesday night, the Houston Astros won the World Series, so it is with 300% certainty that I say there was some special magic floating around Houston and I am so grateful to have received some of it.

But, the celebration was fizzled because Thursday I still had to be infused and thank God some of that magic from Wednesday carried over because, finally, I avoided nausea and vomiting from the amino acids they give me to protect my kidneys.

Friday, I was back at Excel for a quick scan to reveal the medicine was in place and we headed home to Nashville that afternoon.

The only negative thing that came out of Houston this visit was a cold my husband and I both picked up during our travels. Fortunately, it wasn’t too bad. We pretty much spent the weekend watching Netflix on the couch, ordering take-out, which is probably what we would’ve done anyway.

Once Monday rolled around, we were both feeling better and the only agenda item for the day was a trip to Vanderbilt University Medical Center for my Lanreotide. I’ll admit, I was pretty tired on Monday, but in a psychic stroke of genius I planned my appointment for 6pm, which allowed me to avoid traffic, wait times and rising early, which is no bueno for me. Each day I woke up with more energy and by Thursday, I was fully back to the land of the living. So much that Friday, I went hang gliding for World NETs Day. Read about that here.

Even better, I am officially free from cancer treatment until the 2nd week of January and we are off for fun in the sun and a European holiday.

Ciao!