Cancer Survivor

Trick or Treat, Halloween Will Bring Surprises

By on October 28, 2016

Halloween is right around the corner, and it conjures up so many memories and emotions. One cannot deny that fear is a central tenet of this “holiday” and, simultaneously, the emotion I’m working so hard to control. FEAR. To add insult to injury, I will be traveling again.

I am headed to Cancer Cure Headquarters – the National Cancer Institute at the National Institutes of Health. It’s time for my quarterly journey to visit with my clinical team to get poked, prodded, scanned, and scanned again to discover how well my magic meds are working.

I began this clinical trial on Dec 9, 2013 and have blissfully watched my tumor shrink by 47 percent. The tumor is located in my pelvic/hip region – a.k.a. my booty – which, conveniently, has also followed the shrinking trend. So yes, I have taken a little white pill twice a day and my ass has gotten smaller. Truly magic meds.

With all that great news, you’d think I would look forward to these visits, right? But that’s the trouble with PTSD – we are deeply, deeply trained to let fear rule us, to prepare and expect the worst so we won’t be disappointed when they tell you IT is bigger. Even when IT starts to get better, because now you worry even more: When will IT stop getting better? How long will this last? Am I ok? Why can’t I just enjoy being a little bit better? Some of us have a nickname for this particular type of fear – we call it “scanxiety.” Whether that fear is rational or not, anyone who has had cancer or a chronic illness monitored knows exactly what I mean.

I believe that each of us has something we’re afraid of, and it’s always relative to our own lives. Am I financially secure? Are my children safe? Is my job locked in? For us cancer folk, the stakes run high: When will I die? Will it be horribly painful like it was for others I’ve witnessed, like it was for my parents’ at their end stages?

The list of questions seems never ending. Will I get a chance to finish my bucket list? If I’m lucky enough to survive my first tango with cancer, will I live in constant fear of when it will return? How can I go through those rigorous treatments again? How can my family go through this again? What will we do? Just recently two of my cancer sisters died from our disease. So  why am I being saved while others are dying? Why can’t I just be happy all the time? As far as the mind’s eye can see, fear is a bottomless pit, and the more we dedicate our time, energy and thoughts to it, the deeper the chasm becomes.

Me with my dad, whose birthday is on Halloween.

Me with my dad, whose birthday is on Halloween.

A few weeks ago, I found myself hanging out deep in the well of fear and wondering how the hell to get out. I could see the light at the top, but the bridge to reach it just seemed infinite. And then a funny thing happened one Friday morning: An EF2 tornado roared past our cozy, seaside home in Manzanita, Oregon. Literally.

After 20 years in Florida and countless hurricanes in the Keys, we were blessed to experience our new home state’s fourth ever tornado of this magnitude. In other words, this kind of weather event is super rare here. And yes, I said blessed. There’s nothing like exploring your crawl space while the lights flicker, then go out, and the sound of a freight train rumbles in your chest while your husband is screaming about flying debris and twisting clouds to snap you back to reality. I mean, really, was I going to let a little trip to D.C. and a few scans I could (and do) sleep through take over my life?

So thank you, Mother Nature, for providing the perfect antidote to my personal fear factor. I had allowed it to cripple me and take over my thoughts, but you spurred me back into action. Gratefully, no one in our town was seriously injured or killed, although there is extensive damage. But I have found that survivors are the same everywhere, and this community banded together within minutes after the storm to begin helping their neighbors recover. In times of fear and struggle, we survivors unite. We know we are much stronger together than alone. And we take that nervous, chaotic energy and channel it into positive action.

My forward motion didn’t stop there. I had an a-ha moment while blow-drying my hair the other day, too. (You know how we Jersey girls love our hair dryers.) Post-tornado, I couldn’t wait for the power to be restored for many reasons, but high among among them were a hot shower and blow dry. Honestly, I do some of my best thinking when I’m drying my hair. Call it #JerseyZen.

As I methodically worked on my blow out, my dad’s birthday – which falls on Halloween – was on my mind. Since I was always Daddy’s Little Girl and I don’t believe in coincidence (remember the Red-Shouldered hawk?), I figured there must be something incredible in store for me next Monday. I firmly believe that my parents did not lose their battle with cancer; they just joined me in mine. So I figured I should get dressed up in costume to make a normally stressful, scanxiety-ridden appointment a little less clinically routine. But what would I be?

Then it came to me. As I neared the end of my hair-drying Zen moment, it all became perfectly clear. I would dress as a desmoid tumor! I will use the day at Cancer Cure Headquarters to spread awareness about our disease and the incredible clinical trial that Pfizer, the Desmoid Tumor Research Foundation and NIH are supporting that is literally saving my life! We are all working so hard to expand the research so that more of my cancer brothers and sisters can join me on this incredible journey. Just imagine how many questions a one-legged tumor with eyes will generate throughout the day!!

tumor-kernels

I’ve collected my costume supplies!

And then I thought, What if I write about this on my blog? What if I post about my day on social media and keep everyone apprised of my progress? From gorey blood work to scary scans to the pinnacle of the fear factor, I will deliver the RESULTS. I will post it all! Maybe I could start a social media sensation and raise even more awareness about desmoids and DTRF!

And then I thought, Why keep this to myself? Like the Manzanita community, we desmoid patients have a whole Facebook community page where we post, share stories and support one another. As I mentioned above, many of us are struggling with the recent loss of two of our cancer sisters and we just want to DO SOMETHING.

So I shared my idea, and now there is a whole group of brave desmoid patients dressing up as tumors for Halloween! We will have desmoid ambassadors trick-or-treating all over the country and educating people everywhere about our cancer along the way.

deaann-desi

My enthusiastic friend DeaAnn has already built her tumor costume!

It’s amazing to see the amount of positive energy that has been sparked by this idea. My fellow desmoidians will post pictures of their costumes and share ideas about how to make the biggest impact with the this purposeful costume.

So maybe it was the tornado itself. Maybe it was the amazing positive energy I saw in response to the chaotic whirlwind that tore through our town. Or maybe it was the low-heat setting on the blow dryer that permitted an extended #JerseyZen moment. Whatever it was, I have crawled out of that dark space beneath and have taken action to conquer my fear. I can’t wait to share all of my results with you on Monday! Be sure to like the Dana Pounds Facebook page to get updates on Halloween – the good, the bad and the scary!

desi-tumor-costume-diy

That’s one mean-looking tumor.

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