Tag: netcancer

World Cancer Day

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February 4th is World Cancer Day.

I have mixed emotions about these “holidays”. Part of me thinks they’re important to acknowledge what we’ve endured, those we’ve lost and how far we’ve come. The other part of me hates that I even know about World Cancer Day and have yet to figure out the greatest epidemic in human history when we walk around with computers in our pockets, shoot cars into space and create lab grown meat. But, I’m also grateful to be living with neuroendocrine cancer now and not 20 years ago.

Since I was diagnosed in 2014 nearly every drug responsible for keeping me here wasn’t even an option. In fact, this afternoon I’m heading to the cancer center for my Lanreotide injection – a medicine that keeps my symptoms in check and was FDA approved three months after my initial diagnosis.

With some luck, I’ll be able to make it through cross town traffic to my yoga class to sweat, breathe and move in a way foreign to even the healthiest of people. At the end of class, as I always so, I’ll thank my body for giving me another day.

In honor of World Cancer Day, I’d like to take the opportunity to share this little video I put together for Neuroendocrine Cancer Awareness Day (November 10th).

Cheers to Outliving It another year!

The Season of Grief, Gratitude & Compassion

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87WSyMSm

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:

Check out my other articles on Curetoday.com

PRRT Diary #3: Magic

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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!