Updated April 23, 2019 — one year ago today on April 23, 2018, my father was diagnosed with terminal pancreatic cancer and given only two weeks – two months to live. The following essay dives into the last 71 days of my father’s life and my emotions surrounding elder care, death and love. While the ending is indeed sad, it is ultimately a story of hope and survival. I hope that by sharing that you are inspired to deal with and then overcome whatever is in your path. Our best days lie ahead.
On April 18, 2018, I received the phone call from Chicago that I knew was coming: “My father did not have long to live.” Ironically, it was a bright, beautiful Spring day where I lived in New York City. I stood in the kitchen watching the sunlight stream through the windows as I listened to my father tell me that his doctors have found lesions on his pancreas and liver. We are never prepared to see our loved ones die. However, this call was not a pure shock because over the last year I watched my dad’s health steadily decline.
Turning back the clock a mere 12 months to April 2017 when I turned 40 years’ old, Dad was doing reasonably well considering his ongoing health problems with kidney disease, diabetes, cholesterol and obesity (so many in my father’s generation suffer from preventable diseases that these illnesses are regrettably normalized in today’s society). My darling husband threw an epic 40th birthday in Miami, Florida to celebrate this milestone birthday. Over the 4-day party, my father shared in every aspect of the fun including walking out to the beach to hang in a cabana, enjoying several cocktails and delivering a father-daughter speech that left no dry eye in the room during the masquerade fete.
In June 2017 on Father’s Day, a few months following the birthday party in Miami, my husband and I surprised Daddy and my step-mom in Chicago with dinner, a stay at a fancy hotel and really just our presence. Although we had a great time on that short trip, I took note of Dad’s slower gait and that he couldn’t walk more than a short city block.
In August 2017, just 2 months following Father’s Day, Dad endured another long hospital stay where doctor’s thought he had caught pneumonia. Around that same time, I was booked on a short trip to Paris with friends and also had my annual Martha’s Vineyard family vacation scheduled. For years, my dad’s health had been declining so the ever present question when caring for an elder is always, “Do I stay or do I go?” There is no right or wrong answer here. No matter what path you choose, there is anger, guilt and the underlying question, “Have I done enough?”
I imagine that many children who leave their childhood home to grow and then make a life away feel this angst. One of my favorite sayings is that, “even the best decisions have unintended bad consequences.” When I graduated from Georgetown Law School in 2003, I decided not to return to Chicago but rather practice law in New York City. As a 25 year old, New York was vibrant, full of new opportunities and exciting (happy to share party stories another day). However, I balanced this city life with the very real obligation I felt to remain present with my father in Chicago.
As the years passed, my father’s heath steadily declined. He was constantly in and out of the hospital or sick for one reason or another. I often dropped everything jumping on a plane to Chicago to be by his side. When I didn’t make the trip, I felt the guilt that I could not be in two places at once. By the time my father was diagnosed with “the big C” in August 2017, these conflicting emotions of both the very real obligation to care for my elderly father, the existential guilt that what I was doing was never enough and the constant worrying about a situation of which I had no control had begun to take its toll on me mentally and physically. How could it not?
As summer 2017 wound down, my father finally came home after a lengthy hospital stay. While he was happy to be back home, he had lost a lot of strength. My father’s wife took September and October off from work to help care for Dad. Thank god for that woman. I truly believe my mother who now lives in heaven hand picked my father’s last wife from a poppy field of daisies to love him and provide me with a little breathing room to grow and mature.
Once dad survived the August 2017 hospital stay, my inner voice whispered that his time was running out so I vowed to spend both Thanksgiving and Christmas with him, talking, soaking up his stories and grabbing a few extra memories. For Thanksgiving, I visited our childhood lake house in rural Michigan for the first time in years. Dad drove me around the country dirt roads as I snapped hundreds of pictures while he told stories of his youth like racing to vacation bible school on his bike to spend time with the pretty girls. I say frequently on social media, “To thine own self be true.” My father always appreciated beautiful women. He would curse up a storm when you told him to stop calling the ladies “baby” and “sugar.” My father would do anything for the people he loved but he was a “crotechy” old man very set in his ways. Nonetheless, on this Thanksgiving trip, he played along as I took hours of video and asked a million questions. He never complained and seemed to enjoy the conversation. Although the cancer diagnosis was 5 months in the future, I think a piece of his soul knew that the end was near so he was pleased I wanted to soak up the family history. The trip to Michigan that brisk sunny Thanksgiving was awesome in every way; but even then, I knew we were cheating time.
Up until Christmas Day 2017, while my father was spry, talkative and his ol’ cranky, lovable self, we can now see looking back that the cancer was stealing his spark. He played along with the holiday fanfare but complained of being tired and never got out of his bathrobe Christmas Day, spending most of the holiday on the sofa. Even still, he desperately wanted to have a cocktail or Bloody Mary on Christmas Eve with my husband as he hadn’t had a drink since before that August hospital stay. My stepmother and I adamantly refused because the alcohol aggravated his kidneys. Looking back, we should have just let him have the damn drink! Who knew he only had 6 months left to live?
Just 4 short months later, on April 18, 2018, I received the phone call where my father said to me from his hospital room, “My time is running out. The doctors have found lesions and masses on my pancreas and liver. Jacqueline (he never once called me Jackie), I’m too frail and unhealthy for any additional measures.” The doctors and nurses asked him where his family was and my stepmother called me. She didn’t have to say, “it’s time.” I could hear it in her voice.
I finished a few errands, packed a bag, left my New York City house super clean (that was strangely important to me at the time) and made the trip to Chicago O’Hare International airport. As I already told you above, it’s a flight I have made more times than I can count since leaving home for Spelman College at 18 years old.
A few agonizing and gut wrenching days later on April 23, 2018, the surgeon walked into a small and unattractive hospital waiting room to tell us that my father had Stage 4 pancreatic cancer. Our hearts collectively broke and shattered into a million little pieces. Within 48 hours, I stood in the corner of his hospital room silently sobbing, unable to catch my breath as the oncologist told my dad he only had 2 week to 2 months to live. Just as the doctors warned, Dad declined quickly but he squeezed a hell-of-a-lot living out of the next 71 days: visits with best friends who flew in from all over the country, an impromptu family barbecue, house-calls with middle school classmates, long and deep conversations with all his close family members and even moving to his beloved lake house in Michigan on “Paradise Lake.”
The last time I saw Dad alive was in June 2018 for Father’s Day, we were lucky enough to take his final boat ride on “the lake” as our family and friends affectionally call it. It’s the same small lake I learned to swim around 3 years old and the same lake he first jumped in at 4 years old.
My dad’s best friend Dave halted his yard work and graciously chauffeured us through Paradise Lake’s calm waters and those secret nooks and crannies holding so many memories for us all. Our hearts were full even though we knew our time with Victor Hugo Howell, Sr. was nearly done. In a way, on that boat, as the sun peeked through the weeping willows and the wind whipped my hair back and forth, I could feel God’s caress on each of our souls.
Later that day after the boat ride, despite the fact he could no longer even leave the hospice bed to use the restroom or hardly even sit up for long, Dad was determined to ride in the car to take me to the airport. As I hugged him through the window in the airport’s departure lane, I sobbed because I knew our “cheating days” were over. My guess was that he knew this as well but, nonetheless, his final words as I kissed him one last time were, “Don’t cry baby. I’m not giving up. I’m still fighting.” He passed away a few weeks later on July 3, 2018.
For 21 years following the accident when my 49 year old mother choked to death in 1997, I had the honor and privilege to stand by my father’s side. We supported each other, loved each other and shared the pain of losing my mother. My father was fiery, funny, loving, brash at times, and as the elders would say, “a Chicago South-Side playa” through and through. But my father’s most noble quality was that when he made you a promise, you can, as he would say, “take it the bank.”
As I have tried to explain in this essay, I spent the last year of Daddy’s life trying to say “I love you” with both my words and actions. Trying to spend the time with him creating memories and letting him know he’s not alone. I have always said that when the day comes for my Dad to go home with his God, I want no regrets. Knowing all of this, the 71 days of saying good-bye from diagnosis to death was gut wrenchingly hard. Cancer is an ugly disease. We watched it slowly steal everything from him. As he fought the tumors ripping through his body, I knew that one of my jobs was to give him the assurance that it’s okay to leave. I needed to make sure he knew that I would be okay. It was my job to let him know that I was so thankful that he also took care of me the last 21 years. That even when we fought like old married people, we always had each other’s backs. My father gave me the greatest gift you can ever give a person. He believed in me. In those final 71 days of his life, my goal was to pour that support back into him.
I write this story not for your sympathy but to say elder care is hard. At only 42 years of age, I have seen two sides of death. I experienced the shock of a parent dying suddenly when my mother passed. And now, at middle-age, I watched my father literally melt away for years before my very eyes. Neither is easier. One rips the bandaid off taking skin with it that never fully heals and one is like having your heart painfully eaten bit by bit. I tell you my story in hopes that it might help someone else out there struggling. There is this cloak of silence around death, dying, mortality, anxiety, mental health, grief, loss, hospice, estate planning and so on. I’m ripping the cape off the elephant in the room so that maybe it might inspire just one more person to keep going. Keep hoping. Keep living. Keep searching for the light through the darkness.
Once my father was diagnosed, I stopped writing and posting on JackieUnfiltered.com. For 5 months, I didn’t write. So much time passed that I considering letting the whole damn blog go. After everything that’s happened, what will I write? How do I properly emerge from the shadows and back into this happy space I created with Sikia about “Fashion, Food, & Fitness?” Where do I even begin? The Jackie in the images below is profoundly different from the Jackie I knew on April 17, 2017. She is flawed but wiser because, once again, she allowed herself the privilege to feel the pain of being broken open. With this unimaginable pain, she also had the chance to re-learn that she is kind, blessed to be loved by many and courageous enough to begin again.
So today, as I board a plane back to NYC to experience Spring and all it’s possibilities, I have decided that instead of worrying about where and what to write, I will just start because I know that my best storytelling is yet to come. How can I tell? Because even after all the dark days where I thought I would lose everything that make me Jackie, I find myself once again in the light….still standing.
Xoxo,
Jackie
