The Season of Grief, Gratitude & Compassion

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As featured on curetoday.com

The last few years fall has been a season of challenge for me. In 2014 I was recovering from a distal pancreatectomy and splenectomy after my pancreatic neuroendocrine tumor diagnosis. In 2015 I was recovering from a liver resection, months of chemotherapy and a serious case of PTSD. In 2016 I had a surprise surgery due to a bowel obstruction, a complication from my previous abdominal surgeries. And this year, I am undergoing an experimental treatment, but overall, doing well and grateful to not be watching leaves change through a hospital window.

I admit I tiptoed into autumn holding my breath with optimism I would exit without a traumatic event. While there are still a few days of the season left, I, personally have been spared, but others have not been so lucky, creating a new kind of trauma.

Between September and today, there were four people in my circle who died from cancer. They were all young and all women, making their deaths too close to home. One was a young mother I met in a luncheon in New York City who had a very similar case to mine. We exchanged emails regularly and I got scared when the messages stopped coming only to find my fears realized when I logged onto Facebook after a hiatus to see she had passed away. Another was Beth Caldwell, who died from neuroendocrine breast cancer. I only knew her from social media, where she was revered for changing the advocacy game. And most recently, a friend of friend, who died from pancreatic cancer.

Another one of these new angels was a fellow Cure Magazine contributor, Jen Sotham. I also never met her, but enjoyed reading her blog and being Twitter friends. I always thought she sounded pretty cool and someone I’d be friends with in real life even if we both didn’t have cancer. When I read her last blog, Don’t Think Twice, It’s Alright, I could not help but smile and be sad at the same time because she did it – she won. She didn’t die while still living and she didn’t let the disease break her to the point of bitterness. In fact, Jen got to say goodbye, in a pretty cool way.

Unfortunately, cancer wasn’t the only grim reaper to make an appearance this fall. There was a tragic death of a friend of a friend whose family was already grieving a huge loss. Also, my husband came home one day with terrible news of a colleague that passed away, from a massive heart attack leaving a wife and two daughters. He simply left in the morning to go hunting and didn’t come back. I think of both these families and am heartbroken to think they are left replaying last, perhaps mundane, meaningless conversations and without “I love yous” or important words said. It definitely makes me ask, where is the justice?

With each death I lit a candle and sat for a quiet few minutes processing my feelings. Of course there was sadness, but more than anything there was appreciation for my own life and the people close to me. I feel gratitude for still being here, having an excellent quality of life and for the warning cancer gives.

These losses also have me treading into the holiday season with renewed compassion as I encounter angry traffic, tired crowds and over booked schedules. Knowing the chances are high that the person in front of me experienced loss and hardship this year. I find myself pausing, slowing down and truly appreciating, like never before, the intangible gifts of life, family, friends and my fellow-man. My only wish this year is the same realizations for everyone (hopefully without experiencing death and cancer). And may we all take a moment to light a candle for those empty spaces in our life and the lives of others.

For some inspiration, watch the Jen Sotham’s TEDx talk here, which she gave days before passing away:

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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.