Giving Up the (Cancer) Ghost

My left leg bobbing involuntarily up and down, I tried distracting myself at the loading gate before boarding my red eye flight by concentrating my mental faculties on a dense book about the role of imperialism in the development of contemporary Latin America (in retrospect, a selection from my Calvin and Hobbes collection would have been more apropos). I don’t typically get so anxious before I fly, but this particular journey occurred during an anomalous cyclone of circumstances.

At that very moment, just before my flight, I was expecting my first child, who technically could have been born at any moment. In the middle of the week, in the middle of a brisk Los Angeles night, I was trekking across the continent to the warm, damp airs of Orlando to give a speech – something I once absolutely paranoid to do – to a major pharmaceutical company, on behalf of something I used to never really enjoy talking about: being a cancer survivor.

survivor

Also, to stiffen up that curious cocktail of atypical circumstances, a self-aggrandizing reality show star had recently decided to make air travel a little less expedient for many people by throwing out a ban disguised as an executive order that quickly smashed into a constitutional crisis of a wall. I was really hoping that in the case my baby boy decided to scrape his way into this wild world earlier than anticipated, there would be no delay in getting aboard the next flight and sliding into home in time to catch his debut into my reality.

ban

Despite my anxiety, I hopped aboard, fell right asleep, and blinked my eyes open when the tires were thudding, then squeaking across the tarmac at Orlando International Airport. I slept straight through the flight. I hope I didn’t snore and keep the people around me away from slumberland. For what I truly believe was the first time in my life, a person was waiting for me at the end of the exit gate with my name scrawled across a sheet of paper. Sweet. He was a Colombian (my mom and wife are from there), so he and I connected fast and were soon-after-meeting talking about the difficulties he had coping with the fact that he still deeply loves his ex-wife but he lost her to religion. She was apparently more devoted to spending time in, around, and about her place of worship, to the point where she told him she didn’t have enough time to devote to him. One of the main rifts that caused their separation to ensue was based upon a hardship involving a failed childbirth and the inability to try another. I told him his story reminded me of the melancholic lyrics of a folkloric Vallenato song; a Colombian staple. He responded by telling me that the lyrics for his song were so sad, though, that they didn’t have any music that wanted to accompany them, and that the song kept playing on and on in his head, regardless. This was at around 6 in the morning.

music

I pulled into the Walt Disney Resort, bid farewell to my driving companion, and met a nice woman in the lobby who helped me get everything I needed ready to get into my room and catch some more zzz’s before my speech. By 4 P.M. that day, I was in front of 60 or so pharmaceutical salespeople, reps, execs, and other employees for the chemotherapy drug division of a big pharmaceutical company named Shire.

shire

They wanted to hear about my experience as a young adult cancer survivor. They wanted to get a better idea of how to connect on a more interpersonal basis with teen and young adult cancer patients. Teen Cancer America has exclusively been working to help bring that age group into a brighter spotlight. One of the great friends I have at Teen Cancer America, Hilary Gan, connected me with some of the company’s patient advocates to give the speech I gave that day.

When I was first contacted by the endlessly thoughtful representatives from the company, Wendy Poage and Christie Cioffi, I told them a bit about my past and they wanted to know more. So I told them more, and they had some colleagues listen in the next time to hear what I had to say. They all agreed that my story was going to help shed some fresh light on the perspective that their customers face when they unfortunately have to become one of their customers.

Surreal is a good word to use to describe the experience leading up to my speech. I guess it seems like a good word to use to describe life with and after having cancer, too. It’s always a good thing, I suppose, to pull the discord in one’s life out from the shadows, stare it in the eye, understand it, accept it, and pull it apart until it’s not so burdensome that it’s constantly trying to pull you back into the shadows.

Giving the speech was cathartic for me in that way. I will elaborate more on its contents (my life before, during, and after cancer) in the following installment.

fuel

After delivering my speech, I walked around Disney’s Boardwalk – a collection of small stores, restaurants, and bars which hugs up against a Victorian-esque beach resort and the Epcot Center. I reflected upon the story I shared, the life I’ve lived, and the people who gave me that life.

reflected

Our mom and dad used to bring my brothers and sisters and I to Disneyland frequently; a direct result of my dad having a special admiration for all things Disney. Nostalgia was camping out in my brain that day, as I reflected upon my family; especially my father.

My father, Frank Charles Eck, was a soft-yet-outspoken man who sprinkled his innocent, gentle humor into any topic of conversation. He was an active listener, an enabler of great ideas, and a steadfast supporter of everything that I did. My brothers, sisters, wife, mother, and I sang and cried during his peaceful so long, farewell, auf wiedersehen, goodbye to the world nearly one year ago. He did not know I would be in Florida that day, taking a leap away from fears that once held me back – some of which not even he was aware of – and carrying on his legacy of standing up in front of crowds and telling them a story they might find interesting.

Screen Shot 2017-05-02 at 10.33.03 AM

As I watched the fireworks from Epcot Center from the comfort of my hotel balcony, I pondered, “Dad did not know that he was going to be the grandfather of a child born to his child that cancer tried to strike down and out. He would have loved him more than he loved horse racing, Disney, and the Sound of Music combined, times infinity.”

On February 26th, 2017, in the heart of the San Fernando Valley of Los Angeles, I showed cancer who is boss by welcoming Max Nicolas Eck into this wacky, wonderful world. I also added another milestone to my father’s proud Eck Family Legacy.

Vallenato means “born in the valley.” The sound of spirited vallenato music is now resonating throughout our home.

child

 

Giving Up the (Cancer) Ghost – Part 2

When Shire Pharmaceuticals tapped me to swing by the Walt Disney Resort and talk to some of their employees, I found myself anything but hesitant. Reflecting upon the lopsided state my mind was in throughout and even long after my cancer treatment experience, being anything but hesitant to go talk in front of a group of strangers about that very experience was something I would have run away from and hid if I had been asked 10 years ago.

child

Multiple Choice Quiz:

This is my reaction, 10 years ago, to which of the following questions:

  • “Hey, do you want to hang out?”
  • “What did you do today?”
  • “Do you want to be the class valedictorian?
  • “Care to share a little about your experience?”
  • All of the above

Cancer not only took its toll on my physical health, but it delivered some heavy blows to my mental health as well. After facing a huge shift in body image, an 8 month gap in attendance from “normal” life, and the hazy confusion caused by all the meds and the whole ving-to-deal-with-mortality-when-I-should-have-been-a-carefree-teenager thing, one of the myriad side effects was the development of a social anxiety order that made speaking to everyone – even my own family – a challenge. I was so anxious to talk to anyone about anything that I would literally have spells that made me feel like I was having a mini-seizure or fainting. That was part of the story I shared with the people at that conference that day in Florida.

Florida

I won’t go into every detail of what I told them. Being the son of a wonderfully long-winded father, that would take up a lot of space and time. I’ll try to cram the main points in here. I’d also like to reassert why I decided to participate that day. When I was contacted, it became very clear to me that Shire Pharmaceuticals was genuinely interested in learning about something that Teen Cancer America has focused on for so many years: Getting adolescents and young adults the type of recognition, care, treatment facilities, and patient experiences that they deserve. I was all in. So, in a nutshell, here’s what  I shared about being a teen/young adult who had to run through the cancer gauntlet and had the fortune of a great hospital, home, and family networks to work myself through the aftermath: 

I break my cancer experience down into the 3 main stages:

  1. Life before cancer
  2. Life during cancer
  3. Life after cancer (I’ll talk about this stage in the next article.)

 

Stage 1: Life Before Cancer


I was raised by a pair of loving, fun, and supportive parents, along with some amazing brothers and sisters. I did fairly well throughout school in terms of academics. I loved going to concerts, the beach, and playing guitar. I didn’t have a girlfriend at the time, but I was a young man with those kinds of relationship desires in mind. Overall, I would say I was growing into being a good person, except for one tragic flaw in particular.

ph
Photos of my family and I in random assortments of clothing styles from that transition from the 80s to the 90s. In that last picture: That’s me in the black shirt and sideburns.

I had a small group of friends, which was probably because I had adopted the habits of a bully: I used to verbally tease people for no good reason. It’s not exactly something I harbor any ounce of pride about, but it became part of the overall lesson life taught me when I got hit with the thing that threatened to take life from me.

Gazing through the lens of hindsight, I find deep regret in that negative quality I developed in an otherwise pleasant personality. I know that I may have compromised the future livelihoods of growing people who were just as frightened as I was to come of age in a strange, daunting, critical, competitive, individualistic, materialistic first world high school environment. I now find bullying on all levels to be the trigger of a shocking memory to cope with, as I better understand what it does to people, individually and as groups. Cancer helped me see that.

I turned the page from Stage 1 to Stage 2 after my lymph nodes began swelling, my younger sister told my mom, who made me get blood tests, which showed high white blood cell counts, which made my mom take me to the ER at UCLA, where they did a bone marrow biopsy and a spinal tap, which confirmed that I was up against Acute Lymphoblastic Leukemia.

ucla

Many thanks to the team of intelligent and empathetic people who saved my life!

Stage 2: Life During Cancer


The first experience I recall from this stage of life was watching the words come out of the doctor’s mouths and seeing them guide the tears out of my parents’ eyes. At that moment, I slapped on a brave face and decided to suppress my emotions and confront the cancer like an easy project. I told the doctors to tell me exactly what I had to do, and I personally instructed myself to pull the brave face out anytime anyone else was around. I did not want to think or make it look like I was scared (Even though I was… and I don’t think I should have tried to bury it the way I did).

Putting on a brave face
Putting on a brave face

I responded to the subpar news by having all items of interest removed from my bedroom. I just had a bed, a nightstand, and a lamp. I didn’t care to look at my computer, read books, listen to music, or watch TV. I just sort of spent a lot of time at home: thinking about life, thinking about death, and thinking about thinking.

Semi-Voluntary
Semi-Voluntary Thought Prison

My family were my caregivers. My mother and father took me to treatment, cleaned picc lines, and even gave me sponge baths, when necessary. I went from 205 pretty lean pounds of young male down to 135 pounds of bone and organ and depleted ego within 2 months. The atrophy made walking difficult and playing guitar nearly impossible. I only vomited once throughout therapy, and my hair did fall out. I didn’t go out much, but heard plenty about what was going on around me as everyone else’s world kept turning. 

I homeschooled, slept a lot, and thought a lot about who I was, why I am here, and what I had done. Thinking about being one of the bullies at school was a source of lamentation. I was visited pretty often by friends and family, who offered love, support, and lots of food. 

Despite all those changes, I was consistent about wearing my brave face and not letting anyone into my head. I wanted to believe I was being strong and I wanted to project that to everyone else. From the look of it, everyone bought it – even myself, for some time. 

From that moment on, I would put that same brave face on whenever I was in the company of others. I found it to be an effective coping mechanism. I now believe it was not the right choice.

accepted

I should have cried. I should have wept. I should have done so every time I felt afraid or confused. I needed my emotions to be intact more than ever throughout my treatment, yet from that moment on, I shelved them in favor of a more technical approach. I should have reached out and accepted

more offers for help. And it came back to haunt me once I got to stage 3.
Stage 2 proved to be a jarring experience, to say the least.

Being a teenager is already a crazy journey. All of the developmental stages of life are vital to growing up to be a stable, strong, genuine, kind, productive, compassionate, empathetic, and successful human being. However, there is nothing quite like the gauntlet of being a teenager: We have everything we’ve been exposed to and that has shaped us from day one and then we get swarmed with hormones, self-realizations, social awareness and high school. Competition and the stress of doing well – or staying out of trouble – shape the way our minds twist and turn and look back at the world that they were placed in. We spend more time with peers and friends than with anyone else. We learn to admire friends, and abhor our enemies.

In my own case – I compensated for my own inhibitions by putting others down. Nothing quite prepares us for adulthood like that crazy journey of being a teenager and transforming into being a young adult.

adulthood
Not exactly what the bridge to adulthood looked like for me.

However, when you are a teenager, or young adult, and cancer comes out from under your bed, something happens. That bridge, crazy and lopsided as it may be, that leads us from adolescence to adulthood, gets torn down. You go from social interactions throughout the day to almost none. Your food of choice becomes limited. Your leisure time activities become limited. Your love interests become limited. In my case, almost everything became limited.

any

It was a period of my life that was void of passion (I now believe passion is everything).

However, if you asked anyone who came by to give me a visit during that time, they will tell you that I was happy, strong, excited, and courageous. Taking it like a Spartan. I can attest to the fact that my brave face was always on when I was in their presence. When it was just me, myself, and I, my state of mind was completely different. But I hid that for many years during stage 3 – life after cancer – from everyone, including myself.

At clinic, I was usually getting treated at the UCLA pediatric hematology/oncology outpatient clinic, so I was constantly surrounded by an environment that was suited more for younger children than 17 year old teens. There was never really a patient who was my age around.

I did use to enjoy keeping company with the nurses, doctors, and other healthcare providers who were always around and cheering me up. I still love seeing them every time I stop by to get a routine blood draw and checkup.

Cancer was the savage monster that broke down the bridge to adulthood, living inside me and destroying my body, terrifying my family, and satiating its desire to destroy my peace of mind.

I killed that monster, with the help of my medical team and support network. I buried it.

Just when I thought I put the final nail in the coffin, however, cancer’s ghost slipped out and continued to haunt me. It took me a while to figure that out and fight back.

ghost
Some monsters never let go.

A Call To Action