Gail shared her story in January of 2021.
I watched my husband, the love of my life, drown in his own fluids as he succumbed to his cancer. As he fell asleep that Sunday night, his stomach was bloated, his chest was hard. I pushed my recliner against his hospital bed, my pillow against his bed, my arm around him. A few hours later, I awoke to him screaming with his arms out. I jumped out of my chair and around the bed to get him his morphine. He hit my hand out of the way and yelled and kept yelling with his arms out. My daughter came running down the stairs and begged me to leave the room, trying to shield me from the sight.
Fluid was coming out of Chad’s ears. It was coming out of his mouth. He kept reaching for me and yelling, unable to talk. Then his head tilted and he was gone.
It was not only horrific, but a brutal experience that no one should have to endure. Chad Lutz was a warm, good-hearted person, wise beyond his years. There wasn’t one person who didn’t love him. He was a rugged, outdoors type of man. He loved camping, skiing and mountain biking – anything that got his adrenaline pumping. He was an old soul and the best hugger. Chad was everything to me and I feel very thankful for the years we spent together. I wish his death would have honored his life and the special and kind person he was.
Chad endured a difficult journey through his illness. He was diagnosed with stage 4 colon cancer in early August 2017. He wasn’t the type to go to the doctor but after suffering from severe constipation, accompanied by my nagging him to see a doctor, he scheduled an appointment. We never anticipated it would be cancer.
After PET scans revealed cancer throughout his liver, rectum, lymph nodes and prostate, Chad’s primary care physician broke the news. We cried. We couldn’t stop crying. Chad’s doctor urged us to prioritize having fun together before all his appointments and treatments would start. It was clear that once treatment started, life would only get harder.
Chad was evaluated by an oncology surgeon first to see if surgery could be an avenue to slow the cancer. But his liver was already severely damaged by the cancer, that surgery was never an option. The surgeon further broke our hearts, “You’re lucky if you live two years.” It was devastating. Chad’s oncologist nor his family doctor had shared a prognosis.
At only 43 years of age when he was diagnosed, Chad wasn’t going down without a fight. He went through nearly a year of chemo, of which the outcome felt promising. He also endured 28 rounds of radiation for the tumor in his rectum, which ended up causing an abnormal rash in his scrotum area. The tumor had shrunk considerably. We were hopeful.
But the relief we felt did not last long. Chad developed severe symptoms of lymphedema, a build-up of lymph fluid in the fatty tissues just under the skin – commonly caused by cancer and cancer treatments. He sought medical attention, but nothing helped. The prescribed treatments only escalated the discomfort.
Then, within months of Chad’s cancer seeming like it had taken a positive turn, Chad was told his cancer was active again. He tried the same chemo treatment as before, but the side effects this time around were horrible. He developed terrible neuropathy that was destroying his hands and feet. His fingers were red, sore, and peeling, and he eventually lost his fingerprints. He couldn't hold or touch anything cold. So he stopped chemo not too long after. We were both very scared by his elevated pain and symptoms.
Chad, determined to get ahead of his cancer, asked his oncologist for a different treatment plan. He started a new chemo treatment, but only got through the second round. He felt sick, lacked appetite, was losing weight quickly and his lymphedema was exacerbated. The lymphedema caused intense pain and embarrassing symptoms. You could see the fluid oozing through his pant legs. Nothing was working to alleviate his suffering.
Things were getting worse by the day. By November of 2020, Chad had about 45 pounds of lymph fluid accumulated in his bottom half and he could barely walk.
I thought back to early into Chad’s diagnosis. We'd watched a TV show where a nurse would visit terminally ill people and help them pass peacefully. We both hated the show and appreciated the concept. Chad was afraid of the unknown intensity of suffering he would face at the end of his life and the fact that his family may have to witness it, helplessly. He didn’t want to think of his death, but the idea of receiving help at the end to transition peacefully was a comforting thought and an option he wished existed in Pennsylvania.
Chad was nearing the end of his life, but we didn’t yet know it. All we knew was that he was continually suffering from distressing symptoms and pain. We had an appointment with his oncologist and a phone visit with the nurse two weeks prior to discuss what could be done to ease his suffering.
When we met with the oncologist on December 21, 2020, he told us that Chad was not healthy enough and it was time to decide if we would move forward with hospice. That night, as Chad and I sat crying together in his man cave he asked, “I gotta ask you. Remember how the doctor said hospice can make this pain go away and make me comfortable?” I responded with a yes. Then Chad said, “Doesn’t that sound so nice?”
I called hospice the following day, but they said they weren’t going to be able to send someone out for another four days. Within minutes of hanging up, Chad was in such devastating pain that I decided to call back and beg that someone come out that same day. Hospice came two days later and evaluated Chad’s condition, asked us about our goals - we wanted one last day trip together to Gettysburg.
On Christmas eve, the hospice nurse informed us that Chad would likely die within 48 hours to a week at most. I was angry. Not at hospice. Not at the fact that we would never go to Gettysburg together. I was angry that I was going to lose my best friend. I was going to lose the warmth of Chad’s hug forever – a hug no one could compete with.
The truth is, Chad was robbed of his life by the beginning of November. He was in immeasurable pain and severe discomfort. His skin was leathery and raw in places from the lymphedema. You knew his pain if you just looked at him. He was pale, all his muscle mass had been wilting away for months, and his eyes were so big and he just stared, like it took all his concentration to endure the agony.
Hospice helped somewhat with Chad’s pain, but then his mind was fogged. He wasn’t himself on the pain medications.
Chad should have been afforded the freedom to choose when he had endured enough and was ready to say goodbye. Had medical aid in dying been available in Pennsylvania, we would have asked his doctor about it proactively in September when Chad’s health was quickly declining and he was forced to go on disability. He wouldn’t have had to suffer in excruciating pain for those additional weeks.
Watching Chad during his last months of life, I have no idea how he dealt with the pain. It was horrific, and then the way he went out was gut-wrenching. Hearing Chad’s guttural yelling in his last moments of life and watching as he drowned in his own fluids was traumatizing.
It is too late for my husband to have the peaceful death he deserved, but I won’t stand for others suffering needlessly in my home state. Chad’s painful demise has inspired me to advocate for medical aid in dying. There is no way I’m putting my daughter through this again. If Pennsylvania legislators don’t do right by their terminally ill constituents, and I am ever diagnosed with stage 4 cancer, I will move to another state where people are trusted to make their own end-of-life care decisions. No one should be forced to suffer like this, especially with the heartbreaking reality that things could be drastically different if they just lived in a different zip code.
