When it Comes to Cancer: Some Days You Cry and Some Days You Dance

Two weeks after my boyfriend was diagnosed with advanced esophageal cancer, I sat on the side of a frozen Chicago sidewalk – and I completely lost my mind.

I was surrounded by healthy, cancer-fighting produce that had suddenly burst from the bottom of my grocery bag, and the sight of organic avocados spinning down the icy hill sent me into an utterly unexpected rage.

Some Days You Cry

I threw my stupid, useless, eco-friendly bag into a nearby skateboarding park and let angry, unstoppable tears pour down my face. I remember the noise that I made because the guttural howl actually made the huddled and bundled men who sleep in that park take a few steps away from me.

I still feel that rage sometimes. I tend to take it out on food – once throwing popsicles angrily around my kitchen because I couldn’t fit the box into the freezer.

I think it is because food used to be a favorite thing for Jeff and for me. For us. We loved to cook together and to explore new restaurants together. In fact, it was over half-priced wine and a bevy of $1 oysters that we determined that something was really, really wrong with Jeff.

Just before he was diagnosed with cancer, Jeff weighed a healthy 200 pounds.

Something is Very Wrong

It was late January and we had hopped into a West Loop bar to warm up. I was telling one of my long-winded stories and settling into a glass of pinot noir when I noticed his eyes watering. He had tossed back an oyster with hot sauce and the thing was just sitting there in his throat. He actually listened to the end of my story before he went to the bathroom to throw up.

Jeff and me before an Eagles v. Seahawks game in Seattle. (My Hawks won!)

On that day, Jeff was 200 pounds, a good weight for his six-foot-three-inch frame. He was healthy and robust, with the exception of a nagging cough that started over the Holidays.

A week later, Jeff’s beloved Eagles won the Super Bowl and he barely saw it happen. Curled beneath a host of blankets and a good 15 pounds lighter from the “flu” he was battling, he held up a victorious fist when the Patriots fatefully fumbled, sweated through the final Hail Mary, ever so briefly relished the long-awaited championship…and he went back to sleep.

The Start of the Doctors Visits

Jeff actually had to advocate and fight to get an endoscopy. At 40 years old, the doctors weren’t really concerned about a throat cancer that typically ensnares older men who are drinkers or smokers.

When he did get the endoscopy on Valentine’s Day (two weeks after the oyster and 10 days after the Eagles won the Super Bowl), the doctors could barely fit a pediatric scope down his throat. They described the tumor as a pulsating mass, five centimeters in length. It blocked most of his esophagus.

 A Whirlwind of Tests

We had never heard the words “you have cancer,” so we didn’t understand what was coming.

If you had asked me in January about the difference between a CT or PET scan, I would have shrugged, sipped some wine, and tossed back an oyster. Today, we know about endoscopies, biopsies, CT scans, ultrasounds, PET scans, cancer boards, second and third opinions, esophageal stent placements, chemo port placements, PEG (feeding) tube placements, MRI scans, and every type of blood test you can imagine.

Today, we also know that Stage IV means that the cancer is no longer “localized”. In Jeff’s case, it has metastasized, spreading to the pelvis, spine, and lymph nodes. After three devastating rounds of chemo and a total loss of 55 pounds, we learned this week that his cancer actually doubled down and spread further into his liver, kidneys, and lungs.

Still my Rock

Jeff receiving chemo at Northwestern Hospital

Through it all, Jeff has been unbelievably upbeat – far more concerned about those of us who love him. Though he weighs just 150 pounds now and the chemotherapy leaves him fetal for days at a time, he finds a way to hold me. He still sings in the shower, even when he can’t stand up in the shower. He still makes me laugh every, single day. He makes a point to do so.

When Jeff discovered that he was not selected to receive immunotherapy through a clinical trial, I raged about losing the “life lottery.” Jeff, on the other hand, said simply “well, what can you do, babe?” And so we moved on.

When Jeff discovered that the next round of chemo would take his curly hair, he simply asked that we call a barber to come over to his hospital room to proactively shave his head and trademark beard. He refuses to let cancer define him.

Sick as he is, Jeff remains my rock.

Some Days You Dance

This isn’t the best week for Jeff. He hasn’t left the hospital since Monday and he received a shocking setback when he learned that the cancer had grown despite his best efforts. Before entering the hospital, he carved another hole into his belt so that he could keep his pants from falling off his body.

Despite it all, just last Saturday, Jeff woke up humming Dire Straits. So, we woke up the neighbors with some early morning classic rock – and we danced.

Jeff has a hell of a battle before him, but I know that he will keep laughing and he will keep dancing. Because life is too damn short not to dance.

Postscript: Sometimes You Have to Say Goodbye

UPDATE: Jeff died on June 4, 2018, just four months after his cancer diagnosis and one month after I wrote this post. He talked of dancing and barbequing with friends until the last day. He never wavered in his commitment to life or to his friends. He is an inspiration.

Jeff’s family set up the Jeff Elko Memorial Fund to continue the field trips that Jeff once organized for at-risk youth and children with disabilities. It’s a beautiful thing to see the kids exploring sled hockey and the disabled adults who aged out of his program participating in goat yoga. He would have laughed and cried. It is a fitting tribute to a man who laughed as easily as he loved.

I have left this raw post untouched in the case it helps anyone whose loved one is diagnosed with cancer. Your rage is understandable.

Here is a recent post I wrote on Medium about the lessons I learned from Jeff’s death:

Watching My Fiance Die Taught Me How to Live: On Grieving

My best piece of advice other than making time for yourself and to see a therapist? Find a remote place outdoors where you can scream at the top of your lungs to whomever it is that is listening up there.

For those dealing with the loss of a loved one, please see my page on grieving, and please know that you are not alone in your grief. 

While I am not a therapist, I am here for you if you would like to tell me your story.

I also recommend the Hot Young Widows Club. The group has an inclusive interpretation of the word “widow”. If you lost your person, whether you were married or not, you can join and feel the love and support of others.

 

38 Comments on “When it Comes to Cancer: Some Days You Cry and Some Days You Dance”

  1. So sorry to hear this. I worked with Jeff at Camelot Hoffman Estates for a couple years. I respected the hell out of him, his work ethic, and the heart he showed to kids who did not make his life easy (to say the least). Does anyone know if there is a GoFundMe set up?

    • Hey Dan,

      I’m sorry for the long delay. Appreciate both of your messages throughout the hard days.

      After Jeff died on June 4, we set up the Jeff Elko Memorial Fund, which provides support to the kids at Camelot. We want to make sure that the field trips and life experiences that Jeff coordinated still happen even though he no longer there to coordinate.

      So many people responded that we are able to bring on a professional fund manager and donations will be tax deductible. In the meantime, here is the info:

      SEND DONATION TO VENMO
      @JeffElko-MemorialFund
      Please indicate your name in the comment section

      2. SEND DONATION VIA CHECK TO
      Jeff Elko Memorial Fund
      516 St. Anne’s Lane
      Exton, PA 19341

      Thank you!
      Jen

  2. Jen, The Lens of Jen is beautifully written. I am a friend of Jeff’s Mother and Aunt Donna. I will keep all of you in my thoughts and prayers. Keep faith and keep dancing!

    • Hi Kim,

      Thanks for your support in those hard days. And thanks for being a friend to Karen and Donna, two wonderful people who are now family to me.

      I know that Jeff is somewhere dancing. 🙂

      Sending love,
      Jen

  3. It is so hard to know what to say but know I am sending good good thoughts to both of you!

    • Hey Toby,

      There really aren’t words. But the little messages of support during those hard days meant SO much. Thank you for reaching out.

      Sending love in return,
      Jen

  4. We are friends of Alan and Susan- two wonderful people Having read your blog, I can tell you and Jeff are in the same category. Getting into this new clinical trail may be life changing.

    • Thanks for your support Linda.

      One of the many gifts that Jeff gave me was a new family. I’m lucky because Alan and Susan are amazing. And they tend to have amazing friends!

      Thanks again for your support,
      Jen

  5. I’m not on Facebook, but Nicole brought this to my attention…you both are in our thoughts and I know you will fight this and never give up. I know a lot of the guys from the team would want to you to know we are here for you and pulling for you. Beat it.

    • Jason,

      Thanks for your support during those hard days. Jeff did see these comments and they meant a lot. He knew you and the guys were pulling for him.

      -Jen

    • Thank you for your support during those hard days. Jeff did see these comments and they meant a lot.

      All the best,
      Jen

  6. I know Jeff since the day he was born. I am close friends with his Mom and Aunt Donna. Thank you for loving him and for the courage this takes. I pray daily that you will have a long life ahead. Much love coming your way.

  7. Hi Jenn!
    I don’t know you but I do know Deb Dobler who posted this. I can relate to your entire story! My husband has stage 4 renal cancer…..I get it all! Wish I didn’t! Would love to keep in touch with you guys as we all walk this journey of cancer!!

    • Hi Beth,

      Thank you for sending this message of unity during a hard time. I’m not sure if you saw, but Jeff passed away on June 4th. He was strong, dignified and loving until the last breath.

      If you ever need a bit of support, I’m here for you.

      -Jen

  8. Jen, The Lens of Jen is beautifully written. Karen is my best friend and I have known about Jeff’s battle. My husband and I are so glad you are with him fighting this horrible disease together. He is so lucky to have you and we hope you dance for a long time. Our prayers go out to you, Jeff, and Karen multiple times daily.

    • We are lucky to have YOU as a solid support and friend. Karen is family now…so I guess that makes you family now, too!

      Thank you for sending so much consistent love and support during those hard times.

  9. Hi Jen, Karen and I are friends living in the same development. I am so sorry that Jeff has been diagnosed with cancer and has a tough battle. Your support, love and devotion to Jeff is heartwarming and I will keep all of you in my prayers.

    • Elissa,

      Thank you for your support during those dark days. Jeff saw many of these comments and it meant a lot.

      Karen is family now. One of the many gifts that Jeff gave me.

      -Jen

  10. Jen, The Lens of Jen, was introduced to me by Jeff’s mom, Karen. She and I were friends in high school and now simply on FB. Through your LENS is the first I heard of Jeff’s illness. I will be praying for both you and Jeff that there are much fewer tears and many more dances.

    • Hi Bonnie,

      Karen is family now – one of the many gifts that Jeff gave me. We appreciated – and still appreciate – the love and prayers during a hard time.

      -Jen

  11. This is beautiful. I will pray for you and Jeff and Karen. Taught with her for a number of years at ETC. Cancer sucks. Three people in my immediate family had and have it. Know all too well the terms you used and the to frequent trips to the doctors and cancer centers.

  12. Jen, you are a strong, amazing woman. Jeff is so lucky to have you by his side as he fights this battle. I am lifting both of you up in prayer. Jeff is a strong young man — he’s got this!

  13. Beautifully written. So happy Jeff has your love. (Jeff’s mom and my husband are cousins. Know that we care. Hugs.)

    • Hi Anne,

      I’m sorry for the long delay.

      Karen is family now – one of the many gifts that Jeff gave me. I guess that makes you family now, too. 🙂

      Thanks for your support during a tough time.

      -Jen

  14. Jen
    So beautifully expressed. I am thinking of you and Jeff. I’m sure you are his graceful strength now.
    With love
    Jeanne Arens

  15. We love you, Jen, and are sending love to you and Jeff. I believe massive amounts of good will and healing love can change the cosmos. We’re adding our love to the tidal wave coming your way.
    Aunt Cindy, Uncle Bob, Joe

  16. God, Jen… You are so amazing. Jeff is amazing. Bless both of you amaizing humans who found each other. I’m insprired and grateful to know you both. As always, whatever, anything you need, I’m here. So much love and light being sent your way. Oxox

    • Well, Jeff was certainly amazing. And now we’re all amazing because he’s looking after us. Thanks for your love and support along the way.

  17. I am so very sorry for both of you and o incredibly glad you have each other. So much love to you.

    • Thank you for your support, Shana. I’m sorry for the delay in getting back to you. But all of the comments were seen by Jeff and he was moved by the support and love.

  18. Looks like you moved – thinking of you always = reach out and I will be there. I am so sorry.

    • Hi Megan,

      I didn’t move until Jeff passed away on June 4th. But then I did pack up my stuff and buy a one-way ticket to Europe. I’m in a remote village in France now, recovering, writing and reflecting.

      I hope to see you when I get back in November!

      Jen

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