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.

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Pope Francis Fever

I pride myself on being fairly well traveled, so it is with some embarrassment I confess that I have never been to Italy.  I know, gasp. In my defense, I’ve wanted to go for years, but was always kiboshed by my love and loyalty to my french husband. Let me explain.

It’s 2006, in Berlin, Germany. France versus Italy in the World Cup Finals. Tensions and stakes between the rival teams have never been higher. The score is tied when Italian player, Marco Materazzi, decides to play a psychological game and begins provoking France’s soccer king, Zinedine Zidane. Something about mothers, sisters and sexual atrocities. Zidane reacts as any hot blooded, Latin man would. Click here for a visual. Chaos ensues. Zidane gets a red card and is ejected from the final, most important game of his career. Italy scores, wins the World Cup. Even the statue France erected in Zidane’s honor (seriously) could not erase the decade long grudge my husband has held against the country.

Fortunately, time has started to heal his wounds (and it didn’t hurt that Italy did not qualify for the next World Cup) – I talk him into a few days in Rome in exchange for my pledge that I will cheers all my drinks to Zidane and allow him to vent while in the city (ie, allow him to call Italians dishonorable cheaters a few times a day). Deal.

We did all the things one does, when in Rome, however, my favorite was Vatican City. I booked a “Highlights” tour weeks in advance, which was three hours containing an overwhelming amount of interesting history and information. I was most touched by the story of Michelangelo, who was called on by Pope Julius II to bring the story of Genesis to the ceiling of the Sistine Chapel. See, Michelangelo wanted nothing to do with painting. He was a sculptor, but after several refusals, he eventually submitted, agreed and created one of the most important works of art in the world. His story was another testament to the Hero’s Journey and how we are often called to do things we don’t want to do.  And it is in those answers of the call that we find our greatest life’s work and purpose.

No photos were allowed of the ceiling and if there were, I wouldn’t have taken any. It is just one of those things you have to see with your own eyes and not through a screen or crappy smart phone photo.

We did return to the Vatican on Sunday to take part in Pope Francis’s weekly angelus (blessing) which resulted in me contracting Pope Francis fever. As a striving minimalist, I threw my values out the window and bought way too many trinkets dedicated to his Holiness. Basically, if you need a statue, rosary, pin and/or postcard with the Pope’s face on it for the next decade – I am your gal.

IMG_5337The rest of the time in Rome was spent walking around, watching fireworks over the Colosseum on New Year’s Eve, leaving no carb behind, dodging crowds and coughing at the clouds of cigarette smoke they must be pumping out of the sewers. Haven’t you gotten the memo Romans?

On January 3rd, it was time to return to reality, the United States and specifically Houston for my last Peptide Receptor Radionuclide Therapy on January 11th…to give cancer another head-butt.

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Long live the King

Another Crazy Christmas in France

I love going to my in-laws in the French Loire Valley for Christmas, which is a sacred familial time for them.

This year getting out of Nashville was a bit exhausting due to all the normal get-out-of-town craziness and preparations for my last Peptide Receptor Radionuclide Therapy (PRRT) which is scheduled for this week (January 9-12). I’ve been feeling good, but I was definitely burning the candle at both ends. Even so, I was a little surprised that my therapy clearance blood work showed my red blood cells and platelets plummeted. Sure, it’s not unusual for this to happen and there’s a good chance I even sabotaged myself.

I’d been hearing so much hoopla around the ketogenic diet, including that it is good for cancer patients since it starves cancer cells of the glucose they need to grow.  BUT, as it turns out, guess what red blood cells need to reproduce? If you guessed glucose, then you are correct. Oopsy!

Fortunately, the counts were still well above the therapy minimums and gave me a self signed permission slip to reinstated carbs, which would’ve been an epic failure (and just all together wrong) in France and Italy anyways.

Enough cancer.

Flying to Paris and arriving was a shit show but no more than usual. Travel in Europe is a physical work out, but I was happy to arrive to my beloved village of St. Cyr en Val to be greeted by droves of family. Also, it was extra fun this year since my friend from Nashville joined to experience a French Christmas.

We spent the first few days getting adjusted to the time, visiting Chateau de Chambord and locating a few Camino shells throughout Orleans, a potential stop for those walking to Santiago from Paris.

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In the hot seat!

Christmas Eve was the big event! This is when 50 of my crazy french in-laws drink oodles of champagne, sing, dance and eat platters of oysters.  This year the chaos was amplified by a photo booth, introducing them to white elephant/dirty santa and CLR….until 4am. It was really fun and I can officially say that I am completely acclimated (it only took nine years). We even ventured off to midnight mass where Father Jean-Baptiste called me to the pew for a little interview. I was throughly embarrassed, but also touched since I know he prays for my health often. Last year he blessed me and this year he expressed excitement about my trip to Rome to see his boss, Pope Francis.

The following days after Christmas Eve shenanigans were filled with gifts and visits and food and drinks and naps. I was tired and my brain hurt from french but I think it was my favorite Christmas in a long time.

On the 27th, we were off to Paris for a couple of days. Day one was spent walking around Galerie Lafayette, seeing the sights on a Bateaux Mouche, a comedy show and a long, late dinner at a tapas restaurant. My Nashville friend also had a great time with the exception of the last night where she was hit with food poisoning and spent the whole night sick. With her night reminding me of the months I spent laying on the bathroom floor I felt so bad for her having to travel all day feeling like that. Fortunately, I don’t leave home without  a couple Zofran, which helped her make it home after a looooooong hard day.

img_5268As she soldiered through, my husband and I got to experience something really special at the Paris Zoo. His cousin is the giraffe keeper and invited us for a private visit with her 15 giraffes. We got to feed and pet them and take pictures. It was incredible and it took everything I had not to steal one. With the day spent fawning over giraffes, we walked around the Champs Elysées and met an old friend for dinner. We haven’t seen him in seven years and wow a lot has happened and changed. Satisfied with a wonderful time in France, we went back to our friends tiny apartment for a long sleep before jetting off to Italy in the morning.

Cheers to many more Christmas celebrations in the Loire Valley!

See…they cray!