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!

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Review: Everyday I Fight

51zYCKX2OoL._SX332_BO1,204,203,200_I’ve been hoarding this book from my public library for months and received word they want it back, so I’ve spent the last few days immersed. Disclaimer: I love Stuart Scott and first remember him, not from ESPN, but the VH1 documentary series, “I Love the 70s/80s/90s”. He was hilarious and those are totally worth watching on YouTube. They are hysterical and will remind you of all the forgotten pop culture trends of your youth.

I digress.

I fell even more in awe of Scott when his 2014 ESPY Award speech went viral around the time when I was diagnosed with a Pancreatic Neuroendocrine Tumor.  In his inspiring speech he encouraged those “in the fight” to cry, “Live. Fight like hell. And when you get to tired to fight, then lay down and let somebody else fight for you.” I still can’t watch it without sobbing. And when he died in January 2015, I took it personal. So, I should’ve known that reading his words would hit me right in the feels and leave a puddle of tears and tissues on the floor next to the couch.

‘Everyday I Fight’ expressed many of the thoughts that pass through my brain regularly. Let me share a few passages and sentiments I found powerful:

“Once you’re told you have it, cancer is never not with you. My life was now forever divided between the before and the after of my diagnosis. I’d look at people walking by and I’d think: ‘You don’t have cancer.’” Then, “I came to realize what I was really doing making these observations: I was noting the innocence of others. And on some level, I was mourning my loss of the same. I would never have that again. That carefree, total immersion in simple moments. From now on, whenever I laughed, it would no longer be an innocent laugh;” Wow.

“There’s not any time of any day that you forget you have cancer. You never have a moment when you say to yourself, ‘Hey, wow, I forgot I have cancer.’” I feel like this could be applied to situations where family or friends don’t mention the word in my presence. Perhaps they are thinking it will only remind me. And I’m here to echo Scott – I am NEVER unaware that cancer is a part of my life. It’s better to acknowledge it and move on than to be silent.

Later he describes his surprising indifference when his doctor told him his body showed no signs of disease. His response to the “good news”: “that anxiety never leaves you. In fact, it only gets worse – because you’re no longer taking proactive steps to combat the disease.” Man, I have been there. In fact, I’ve notice my anxiety is heightened when I am classified as “No Evidence of Disease”.

Scott reached out to Lance Armstrong for advice who told Stuart it took 12 years of clear scans for that anxiety to fade. 12 years where he didn’t have cancer on his mind every second of everyday. 12 years! That’s over a decade where Armstrong was killing it on the bike – okay, say what you will, but the man is an endurance athlete through and through.

After the inspiring ESPY moment, Stuart wrote of the most impactful review of his performance written by then Slate intern, Eliza Berman, “The Most Moving Thing About Stuart Scott’s Speech at the ESPYs,” where she writes, “Cancer is a ‘battle’ People with cancer are ‘fighters’ and if they don’t die from the disease, they are ‘survivors’…The problem is one of language. We have a tendency to foist heroism upon people with cancer in a way that might, at first glance, seem generous and celebratory. But it can also be damaging…Saddling people with cancer with Herculean expectations fails to acknowledge that it is absolutely normal to feel afraid, to feel like you can’t go on, to actually want to give up…This guy (Stuart Scott) who the video showed in the (literal) boxing ring, and on the sidelines of his daughter’s soccer game – even this guy sometimes can’t fight…The world needed to hear that. Scott’s public ambivalence about the superhero cape he’s been given was a gift to all those who don’t always feel like superheros.”

Truer words have never been spoken on the subject of cancer. To read the whole article, click here and if you need a little inspiration or perspective today, (re)watch Stuart Scott.

May he be upstairs screaming “BOOYAH” and jamming to “Rappers Delight”.

 

Can My Cat Detect Cancer?

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As featured on curetoday.com

I know this might make me sound crazier than a crazy cat lady, but, I think my cat might be able to detect cancer.

Before someone orders a straight jacket to be sent to my house, let me explain….

In 2012 my cat started licking and eating the hair off her belly. Thinking she might have an allergy or an invisible strain of fleas, I took her to the vet. After several swipes of my Visa and many tests, the doctor ruled out any physical problem and told me he believed my cat had a mental disorder called Psychogenic Alopecia. Basically, the feline equivalent of Obsessive Compulsive Disorder. Instead of washing her hands a million times a day, she overgrooms. They sent me home with a version of kitty Xanax, which failed miserably. (Those of you who have ever tried to give a cat a pill understand.)

2012 is also when I began experiencing symptoms of Neuroendocrine Cancer. These initial symptoms of this rare, silent cancer included facial flushing, occasional heart palpitations, bloating and trouble digesting food.

After a couple years of my cat obsessively licking her belly and my symptoms increasing, eventually I became symptomatic enough to prompt my doctor to perform a myriad of tests. Neuroendocrine Cancer is often misdiagnosed for five to seven years, but I was “lucky” enough to be diagnosed with a Pancreatic Neuroendocrine Tumor a month after my first doctor’s visit. Weeks following the diagnosis, I had a distal pancreatectomy and splenectomy and was sent home to recover without any additional treatment. My cat stopped licking her belly for a couple of months and then started again. Soon after some spots were found in my liver. And the cycle has repeated itself a few times. When all is well in my body, her overgrooming ceases and when something’s astray, the licking commences.

Could it be a coincidence? Sure, but if scientists are beginning to research dogs’ abilities to detect cancer, perhaps they should explore the secret power of cats as well. And should scientists accept my invitation, I know a certain tabby feline who would happily raise her soft, over-groomed paw in exchange for a couple servings of Fancy Feast.

Neuroendocrine Cancer (sometimes referred to as NET or Carcinoid Cancer) has the largest growing incident increase rate of all cancers. To learn more about this cancer and it’s symptoms, visit www.carcinoid.org.

Read my other articles with Cure.

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My own personal PET Scan