What I Know for Sure about My Survivorship

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I wrote this piece for the Neuroendocrine Tumor Research Foundation’s June Survivorship Issue. Click here for the full eUpdate on topics including research, finding a NET specialist, living with NETs and more. Thank you to NETRF for the important work they do.

Every Sunday on the O Network’s Super Soul Sunday, Oprah asks her guest, “What do you know for sure?” This question has stayed with me and my answers stem from my diagnosis of a pancreatic neuroendocrine tumor in 2014.

However, before diving in, it’s important I preface this post by declaring that being diagnosed with a Neuroendocrine Tumor is  awful. The pain and suffering proceeding this disease is real. I do not want to discount anyone’s experience, so please know that I see you and all of us impacted by this disease see you.

What I know for sure is that cancer will be the greatest teacher of my life. The lessons are vast, innumerable and constantly evolving. Those that come to the top of my mind are resilience, perseverance, humility, strength, letting go, being uncomfortable, grateful, mindful, kind and compassionate. I’m sure I would have eventually learned all of these things, but cancer gave me a crash course and I am better person for it.

I know in the extensive world of cancer, I’ve got it pretty good. A slow-growing disease, where patients are living decades. And not just living long – many are living well. I know NET survivors who have accomplished some incredible physical feats – marathons, triathlons, cross-country hikes, 100-mile bike rides, scuba diving, to name a few. I know it’s not all sunshine and rainbows, but I could see where other cancers and diseases could be envious.

I know this statement may ruffle some feathers, but I’m happy I don’t look sick. I would rather be sick, without looking sick, than be sick and look sick.

I know my doctor is the right person to lead my care team. With only a handful of true specialists, choosing a doctor isn’t too difficult. Other cancers have hundreds, if not thousands of specialists, which I would find overwhelming. With our small NETs community, it’s easy to know whether you’re in the right hands or not.

I know who my friends are and are not. Those who stood by my side are true, loving, genuine, caring people. They are the kind of humSians I want in my life. I also know what a surprise it was to develop new friendships with fellow survivors with whom I share an indescribable kinship.

And what I know for sure is that every sunrise, new moon, holiday, birthday, etc. is a gift. This is true for all of us – cancer or not, but living with NETs – I know it and I live it, everyday.

 

Letting Go & Looking Forward

In March, film maker (and now friend), Rain Bennett traveled to Nashville to spend the day with me. We talked about cancer and a few of the lessons its taught me since my diagnosis in 2014. From our time together, he created this video which is one in a series called Fit to Fight sponsored by Lexicon Pharmaceuticals celebrating the Carcinoid Cancer Foundation’s 50th anniversary. I am so grateful to this organization for all it’s done for me and those impacted by Neuroendocrine Tumors.

And a huge thank you to my yoga teacher, Michelle, who runs the yoga program at Lifetime Athletica in Franklin, TN.  Coincidentally (or not) her yoga practice was born from the same yoga studio as me, in Detroit, The Center for Yoga. The teachings from this specific and unique style have (literally) saved my life.

Check it out:

 

Back to Spain

Spain will always hold a special place in my heart from my treasured days on the Camino de Santiago in 2012 and 2016. Having spent weeks in the country, it’s unusual that I’m more comfortable following a yellow arrow through the mountains than navigating the streets of Madrid or Barcelona. While the primary purpose of my visit was attending the European Neuroendocrine Tumor Society’s (ENETs) annual conference, this trip wasn’t without fun and yellow arrows.

In December, the Carcinoid Cancer Foundation and the International Neuroendocrine Cancer Alliance invited me to the ENETs meeting in Barcelona. It was quite an honor given the few number of patients invited to this meeting attended by 1,500 medical professionals.

As I was sharing this with one of my best friends, Lara, she told me by pure coincidence she would also be in Spain at the same time for a wedding. So, we coordinated our travel plans to spend some time together.

Lara has been a mainstay in life since she moved across the street from me in 3rd grade. Initially bonding over our love of New Kids on the Block and Beverly Hills 90210, I’m happy to say that our tastes have improved and our friendship has grown into more of a sisterhood. In fact, we were born two days a part. We have seen each other through so many bookmarks and chapters. It’s wonderful to have not just a friend and sister, but someone who has bore witness to your life as we have for each other. Lara is now living in London and while we talk often, it had been over a year since we’ve seen one another.

Her college friend who was getting married, graciously invited me to her wedding.  It  was, hands down, the nicest wedding I’ll ever attend. The Spanish women resembled royalty with their stylish dresses and elaborate hats. The bride was stunning and pulled off a dress that was both modern and timeless. The reception was at the Casino of Madrid, a gorgeous venue containing art, sparkly chandeliers and dramatic staircases. The festivities began at 1pm, but I was contending with cancer and jet lag, so I happily took a taxi home at 11pm while Lara partied until 4am.

After the wedding festivities, we walked around Madrid talking and snapping pictures, followed by laying in bed and snacking to Frankie and Grace on Netflix. Monday morning, we both flew to Barcelona for more of the same. Our trip highlight was going inside Sagrada Familia. It’s difficult to express, but the interior is a dream – the stained glass, the light, the colors, the simple and intricate angles, curves and coves. I don’t say this lightly, but Gaudi was a genius.

After a couple of days running around the city, it was time for Lara to get back to London and the ENETs conference began.

The first day I attended was interesting. Meeting some of the doctors, patients and organizations I’ve only known through the internet was awesome. The downside to the meeting – perhaps it was a bit too much information. Let me share an example. Walking through the exhibit area containing case posters, I crossed a situation similar to mine. Okay, the 34-year-old male was diagnosed, he had this surgery, this treatment, that treatment, was doing well, oh, and then he died. I did the math and based on his path, I died a couple of years ago. So, I was able to talk myself off the ledge, but it was a little disheartening.

However, the second day and the highlight of the conference was meeting a patient I’ve dubbed, my tumor twin. Being a rare case of NETs (1 in 10 million), I’ve never met another person like me and it took travelling to the european continent for it to finally happen. And, I’m happy to report that not only is he alive, 12 years post diagnosis, but very well. He and I ate lunch together where he shared the stops along his path and the lifestyle activities he’s adopted. It meant the world to me and spotlighted the realization that I should focus on the thriving person in front of me rather than poster guy….may he rest in peace.

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Montseratt

Once ENETs ended, I had one last free day on Saturday before flying home on Sunday. Having fulfilled my Barcelona bucket list, I opted to head out of the city to Montseratt, a monastery in the mountains most famous for its black Madonna statue and children’s choir. Another conference attendee joined me and it was a gorgeous and fun day outside the city. I did the math and thanks to my time on the Camino de Santiago, this was my fourth monastery in Spain. In fact, the grounds were riddled with yellow arrows and Camino signs because this is a stop on the Catalan Camino de Santiago.

After a long day in the mountains and the city that night, I was content, spent and grateful for another adventure in Spain.