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!

World NETs Day

Friday, November 10th is World Neuroendocrine Tumor (NET) Awareness Day, where those impacted by the disease take to the streets, cafes, medical facilities and, most of all, social media to raise awareness about a relatively unknown disease with an increasingly high incidence rate.

Last year, I attended a luncheon hosted by the Healing NET Foundation featuring a popular specialist, Dr. Eric Liu. Up until that point, I had only met one other person in real life with the same disease, so it was pretty neat to be in a whole room of fellow zebras*. While there, I quickly noted that myself and another girl were the youngest people in attendance, so naturally, we gravitated together and exchanged info.

Let’s just call her, “That Girl”.

Over the past year, we’ve gone on regular lunch dates and supported each other through trying times, both cancer and not cancer related. While our “cases” are completely different we share similar mindsets, aches and pains. BUT, we also have a lot of fun and are both willing to yell “YES” to things outside our comfort zone.  For example, at our first lunch, I also told her about First Descents, a group that takes young adult cancer survivors on adventure trips. The next time I saw her, she was signed up to spend a week whitewater kayaking with organization. And not only did she embrace kayaking like a badass, but she returned from the week to face some hard, life changing decisions. She’s a fellow dream chaser, giver of zero fucks and is pretty darn inspiring.

NET Cancer Day is technically our anniversary, I figured we should do more than lunch. Plus, since we are both First Descent Alumni, we needed to fulfill the “Outliving It” motto. So, with “That Girl’s” signed permission slip of, “if you do it, I will too,” I planned our day, which was a surprise to her until she showed up at my house Friday morning….to go hang gliding.

We drove two hours away to Chattanooga, talking, excited, nervous and not knowing what to expect. Upon arrival, we were both relieved I didn’t buy the “run and jump off a mountain” package. Instead a plane pulled the glider from the ground. It was a cold, but beautiful, clear day and we were lucky enough to catch the last weekend of gorgeous fall colors as we sailed through the sky from 2000 ft. above Tennessee, Georgia and Alabama. It was a lot of fun and I would love to do it again.

After a lunch of laughs, sandwiches and hot soup, we walked around downtown Chattanooga enjoying the sunshine and city before making a last stop at Pointe Park to watch the sun slide behind the mountain. With both of us content and exhausted, the two hour drive home went fast thanks to podcasts, gummy bears and one of the most gorgeous sunsets I can remember.

I hate that I even know NET Cancer Day exists, but love that I got to spend an absolutely perfect day with That Girl. We’re already planning for November 10th, 2018.

*Why zebras? “When you hear hoofbeats, sometimes it’s a zebra and not a horse.” The NET Cancer community has adopted this animal as a mascot and international symbol, because in the medical community it is universally used to reference a rare disease or condition. As a personal disclaimer, I dislike the reference but can’t quite articulate why…

To learn more about Neuroendocrine Tumors (NETs) visit www.carcinoid.org.

Things Are Not Always as They Appear


(Yes, I know it’s long, but I promise it will be worth your time)

I know…
…that surgery and scar on my belly.
…that uncertainty, wondering and wanting.
…that search for the expert and regular trip to New York City.
…that feeling of just not wanting to exist, but to live.
…that desire to have children and not being confident it will happen.
…how to say, fuck it, and keep going when people tell you to slow down.
…wanting to be normal, but also not wanting to be normal.
…the art of balancing cancer treatment and dream chasing.
…wanting to be anxious for something other than cancer.
…rare disease.
…the wait for more research and treatment options.
…getting through and not giving up.

Yes, I know I’m not Gabe or a runner of her caliber. Actually, I wouldn’t even call myself a runner anymore. I don’t personally know Gabe.  I don’t know exactly what she is going through.

But, I do know there is so much I can relate to in her story. And I know there are many out there who can relate. I applaud her openness when it would be so easy to go quietly into treatment. Instead she chose to share and I feel a little less alone and grateful for the stereotype she is shattering.

I also know if you passed her (or I) on the street, you might (incorrectly) assume we are healthy because we are young and fit. Then, once our truth was revealed, you might (incorrectly) assume we should be at home with a scarf covering a bald head, cup of tea in hand, while staring out a window.

Cancer’s teachings are infinite and this documentary of Gabe’s race reinforces a truth I know all to well.  Things are not always as they appear.

 

Gabe Grunewald is a professional runner and an adenoid cystic carcinoma survivor. Follow her on Twitter, Instagram her website.

 

And if you needed more evidence that things are not always as they appear: