“I lost him little by little, and then all at once. Like an hourglass slowly spilling sand until everything had passed into the other side. Time is weird that way. It looks like there is so much, but then the funnel wanes. The sand moves more rapidly.
You get desperate. You see it slipping away. But there’s nothing you can do to fix it. Then the final grain drops to the bottom.
It’s over. They’re gone. It stops.
It wasn’t like that at first. When I met Nick, we were young. Time spread in front of us like a bright horizon. Nick had danced with Cancer once before. We met on the other side of break ups, me with a 5-month-old daughter in tow, and fell hopelessly in love.
Cliché, I know. But we had been through the toils of life early and felt like we were reaping our rewards. We built a home together. We married on the beach, exchanging vows we wrote ourselves.
‘I promise to be strong for you in your moments of weakness, and to allow you to be strong for me in mine,’ I said. I could say I didn’t realize how much that vow would be tested, but I did. I knew that Cancer could come back into our lives. But I loved Nick endlessly, without limit, without hesitation. And I chose to marry him despite the chance of Cancer’s return.
We went through in vitro fertilization and two years after we married, Vera Darlene joined our family.
Then came August. Five weeks after she was born, Nick woke up with agonizing back pain.
I remember the day so vividly.
He went to the doctor and they ordered a CT scan. We packed up our newborn in her seat, wheeled her into the waiting room, and smiled at each other. Our hands anxiously fumbling between holding each other, filling out papers, adjusting a pacifier.
I’ll never forget the fear I felt as I watched through the window while he was pulled into the machine, the hope that it would be alright, my postpartum hormones swinging my moods wildly, feeling like I was in a dream, my gut twisting and turning with the anxiety of the unknown.
I sat with the technician, who had so nonchalantly invited me into the back room, and watched the screen fill with images. Pictures of the inside. I scanned them helplessly, with no idea what I was looking for.
Then trying to have a normal day, taking our 4-year-old, Ella, to ballet, struggling with a crying newborn and trying to nurse while preschoolers twirled. Buckling car seats, then the phone call that changed everything.
My heart broke driving down the road towards home with a little girl in a tutu and a screaming baby in the back seat.
There was a softball sized tumor in his abdomen – wrapped around his pancreas, his liver, his colon.
I sat in the Walgreens with my baby strapped to my chest, waiting for what felt like an eternity for the painkillers he needed. I felt like I was sinking through the floor. The sand draining faster through the funnel of the hourglass now. I thought to myself, ‘can anyone else see the pain I am in? Do my eyes show that I am broken irreparably?’ I often wonder this now when I look at a person. Is this the worst day of their life too? Have they had the worst day of their life yet?
The days went by in a blur. I remember coming home and just sobbing. Sobbing for days. Every second I was alone, I just cried and cried. He would find me curled up on the floor in the bathroom where I tried to hide, pretending I was just washing my face or cleaning pump parts.
I apologized so profusely. I just couldn’t stop. I knew deep in my soul that he was going to die. But what could I say to him? We were never able to be honest about his mortality. Not until the sand was almost gone.
Nick was endlessly calm, patient, and faithful. He always believed there was no wrong that couldn’t be righted. I only saw him cry once after his diagnosis. He was holding Vera and tears slid down his cheeks. He said to me, ‘I just can’t believe this is happening again.’
But he was stoic and hopeful. Even when the oncologist told us he didn’t know what he was looking at, even when the surgeon at Johns Hopkins didn’t know what he was looking at either, but was sure he couldn’t remove it. They had as little understanding of this tumor as I did standing in that back room watching his CT scan images appear on the screen. There were no answers. We were all helpless in those early days.
But we continued to live. Amidst all of it, we kept living. We always did. Our story together was one filled with moments where it felt impossible to even breathe. But our devotion to each other and our daughters always brought us the strength to keep going forward. So we read bedtime stories, went to breweries, visited the zoo. We did everything exactly as we would have done without the guillotine over our necks.
Nick’s case had been put for review at Johns Hopkins and someone knew what it was. Nick had a teratoma with somatic type malignancy. A rare type of testicular cancer that can morph into any tissue type in the body. Nick’s had changed into adenocarcinoma. Teratomas don’t respond to traditional chemotherapy or radiation. Resection is the protocol, and we had been told Nick’s tumor was inoperable.
We sat in the basement exam room, deep in the bowels of Johns Hopkins, as the words came spilling out of this surgeon’s mouth. I had our baby strapped tight to my chest in a sling, I looked desperately between the surgeon, Nick, and our baby.
It was the first of many times the darkness came in to our lives. It was like a knife to my heart. Every time, I would sit in that doctor’s office and instantly feel like my whole body could sink through the chair and fall into the pits of hell. A heaviness and detachment, then the stabbing, raw pain.
I asked, ‘can you fix this?’ But there were no promises to be made. They would ‘try.’
Just under two months after he was diagnosed, Nick had his surgery. I laid on the gurney with him, as I would come to do many times, and when it was time for him to go, I said, like I would also come to do many times, ‘I’ll see you on the other side.’ My promise to him, on Earth or in heaven.
Nine hours later, the other side was the ICU. They had performed the miracle. They had removed the entire tumor, along with parts of his pancreas, liver, and colon. The recovery wasn’t easy. Nick spent over a month in the hospital in Baltimore with complications ranging from pneumonia to retained sutures to a bowel obstruction.
Just before the holidays, he came home. Every day, he got a bit better. He was able to move with less pain, he was enjoying food again, and for the first time in a long time, we were looking forward with hope. We felt light. We told our daughter, Ella, that we would take her to Disney World to celebrate once he had healed more. We celebrated Christmas with our family and soaked up the wonder of the season with a gratitude we had never known before. Even though the fatigue and pain still left him weak, he took up residence on our couch and was still as engaged as he could be in every moment with our daughters, trimming the tree, reading ‘The Night Before Christmas,’ driving around town looking at the lights, picking out treats for Santa, and basking in the magic of children at Christmastime. The lightness was the greatest gift we could ask for.
But January came, and with it, Nick’s post-operative scans.
It was back. It was everywhere. The doctor walked into the room and said, ‘You are young, we aren’t going to stop trying to fight this.’
The melting. It happened again. The hole in the floor opened up and I was falling, falling, falling.
Sand was filling the bottom of the hourglass. The time we thought we would have was falling away from us so quickly.
I couldn’t even look at him. I was completely blindsided. How could I have missed it? How could I not see that Cancer had once again invaded his body? My husband, the man who I had just shared jokes and a pastry with in the cafeteria while waiting for the doctor, was riddled with Cancer. Lungs, abdomen, lymph nodes, and bones. It had taken all of him.
As soon as we got in the car, Nick reached out to me and grabbed my hand. ‘I’m not going to die. I’m not leaving,’ he said. I don’t know if he was telling me or himself.
But his resolve was as solid as ever. Nick, again, remained certain he would beat it. It angered me at times. He was delusional. He didn’t hear what the doctors would say. He just tuned out anything that didn’t go along with the narrative he had created in his own mind.
Very rapidly, Cancer took control of his body. He was hospitalized with a bowel obstruction caused by the tumors spread throughout his abdomen. For weeks, he was in a hospital bed, no longer able to eat or drink, with a NG tube coming from his stomach through his nose to suction the contents out because his body no longer could. The surgeons came in and told us that if things didn’t improve soon, Nick would live out the rest of his days with bags draining his kidneys and his colon and IV nutrition running through his veins. But still, even in these dark days we thought would be our last, Nick had a smile on his face. He would walk laps around the hospital halls every day. He visited with our girls, even when all they could do was sit and color with him. He continued to work full time from his hospital bed. Nick was never a victim of his circumstances. He never felt sorry for himself.
After a couple of weeks, his oncologist came into the room beaming. The oncologist who we jokingly called Eeyore because he always walked in the room grim with bad news to share. The genetic testing results had come in and Nick’s tumor was HER-2 positive. There was a treatment for this. Nick immediately began targeted therapy, and within weeks, he was able to have the NG tube removed and started to eat small bits of food.
I brought him home and became his nurse in addition to his wife. I ran antibiotics, fluids, and TPN, a form of IV nutrition, for him.
These were some of the happiest and hardest days. I got so overwhelmed the first night trying to remember the order of the meds, the alcohol swabs, the saline injections, the heparin lock, and the stupid TPN monitor that never worked right.
My older daughter kept getting out of bed. The baby was crying to be nursed for the millionth time.
I went to the basement stairwell, curled in a ball, and screamed.
I screamed for all of it. My anger, my sadness, my exhaustion. And then I stood up, got his IVs running, fed the baby, tucked in my daughter, and kept going.
We always kept going.
Everyone talks about how strong I was. How amazing it was that he was getting better. They didn’t know the hell of surviving.
The treatment was working, and with it, Nick started to come back. We went on trips to the beach, we saw the Foo Fighters in concert, went on a ropes course, and celebrated our daughter’s first birthday. We bickered like married couples do and worked with a counselor to sort out how we could handle life with Cancer.
We lived so presently in every day that summer. But by fall, Nick was winding down. The treatment stopped working, another treatment was tried and failed, and the only options left were a chemotherapy that would only buy him a bit of time, a clinical trial with virtually no chance of working, or hospice.
Nick wasn’t ready to let go. He enrolled in the clinical trial. Those were the darkest days. Nick was slipping away. He was often confused, hardly able to eat, too weak to walk farther than across the room. His body was a 93- pound shell propped up on pillows on our couch.
Our daughter’s sixth birthday came. I pleaded with him to please try for her. To give her that day. I gave him extra fluids, medicated him, and hoped. We surprised her with a trip to Chuck E Cheese. And he was Daddy again. I don’t know how he did it. He played games, he ate pizza, he sang happy birthday, he gave her all of it, despite all his suffering.
Less than a week later, I came home to find him nearly unconscious on the couch.
I remember looking out the back window of the ambulance and knowing it was the end. The last grains of sand were falling into the bottom of the hourglass.
Nick’s liver was failing. There were no more options left.
It was hard to even picture the light and fire in his eyes when he was halfway to the other side. Until you have watched a loved one go, you can’t understand what it is like to live through the in between. Life and death is filled with a grey space. We were in the grey.
He spent a couple of days in the ICU, then had a surgery to replace stents in his kidneys to try and ease his pain. He hadn’t eaten or drank anything in days, but before the procedure, he said, ‘I’m going to have a pudding when I wake up. I promise, I’m going to eat again so I can get stronger to go to treatment next week.’
When he woke up from the procedure, his pain was agonizing. He wasn’t lucid most of the time, and when he was, he just repeated, ‘it hurts. I just want to sleep.’
I told him it was okay to not eat again. It was okay to rest. It was okay to let go.
I asked him if he understood now. He said, ‘yes.’ I asked him if he was scared. He said, ‘no.’
So I had him transferred to the hospice house. He only woke once when the secretions began and he could barely breathe.
He reached for me, I leaned in, and he whispered, ‘this shouldn’t be happening.’ He was right. It shouldn’t be happening. But it did.
After that, he fell asleep. He never woke back up again. As his face softened with peace and his breathing slowed, I filled the room with words of gratitude, pride, and love.
I walked with him through every bit of the journey, held his hand and rubbed his head though the pain, the treatments, the fear. Then the suffocating, the shallowing, the spasms, and the end.
Nick died on March 8, 2019.
I always thought of heaven as a place you go in the sky. A place where you twinkled like a star, watching your loved ones down below you while your soul sat at peace. Waiting for them to come be with you again. But it didn’t feel like his soul floated away when his last breath escaped. It felt like his spirit slipped behind the veil to the other side. A side I don’t know. Like he is right here next to me. Like there is a force as thin and weak as a curtain separating him from me. As if I was strong enough, I could just peel it away and be with him again. I feel him in the breeze, in the sunshine, in the moonlight. Like he surrounds me. At times, that feels like an aching loneliness. And at other times, it feels like a deep comfort.
He was the man who held me up, then held my hand while I rose. He was the most selfless person I’ve ever met. And then Cancer ate away at all of him. Mind, body, and soul.
But Cancer wasn’t what defined Nick. Nick was a vibrant soul who brought light everywhere he went. We didn’t just lose a husband, a father, a son, a friend. The world got a little dimmer when he left.
The first few months of widowhood were filled with a raw, visceral pain. I had to become vulnerable and dependent on others in a way I had never been before. Not only was my husband gone, but my entire identity was redefined.
As time passed, I began to feel awakened. His loss left me scared, hopeless, lonely, angry, heartbroken, lost. But it also empowered me. I have journeyed through some of the greatest depths of suffering, and I have survived. I got tattoos, I went skydiving, I enrolled in college, I deepened my yoga practice, and I pour love into my daughters.
I choose to look at life in the way that Nick did. In the present, without reservation. Because here and now is all there really is. We each live in an hourglass, none of us sure if there is more sand in the top or the bottom. Nick knew this. And instead of feeling sorrow when reasoning with his mortality, he rejoiced in it.
Anyone who has been through trauma has heard, ‘I don’t know how you do it. I don’t know how you’re so strong.’ I’m able to be strong because Nick taught me how.
It was the honor of my life to be married to him.”
This story was submitted to Love What Matters by Nina Mihelcic Butler of Ashburn, Virginia. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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