THE LONG(ER) STORY
My husband, Mark, died of a brain tumor on February 2, 2014.
I was 44 and our boys were 8 and 10-years-old.
That’s the short story. Now let’s get comfortable and settle in for the longer version…
Our Perfect Family
My self-employed husband owned a business selling chemicals for the metal processing and finishing industries in Detroit. I worked as a technical writer until our kids were born and then I was a stay-at-home mom.
We lived in an idyllic subdivision in an idyllic town and had two beautiful boys and a little miniature dachshund who made our lives complete.
We had a perfect life.
Until we didn’t.
Missing the Signs
The earliest signs of Mark forgetting things started in the fall of 2012. He complained of forgetting how to drive to his customers’ businesses. He couldn’t remember how to get from Point A to Point B on routes he’d been driving for over 20 years. He also forgot things like how to back up his trailer into the garage or the name of our next-door neighbor. I chalked all of it up to him working too hard and/or getting older. The forgetting was weird, but I didn’t pay much attention to it.
In November 2012, Mark tried to purchase a camera bag online for me as an early birthday gift because we were going on vacation. After spending an hour on the website and asking me 15,231 questions about which camera bag I wanted, he said he didn’t know how to put the camera bag in the shopping cart.
I’m thinking …For real? C’mon, man! This is simple stuff!
So I said, very calmly, “just click the ‘add to cart’ button.” But, he didn’t understand my instructions. He couldn’t find the add to cart button. Out of frustration and to save time, I ordered my own birthday gift. That was weird, too. But, I didn’t pay much attention to it.
When my actual birthday rolled around later that month, he forgot all about it. I seriously thought I had an Alzheimer’s patient on my hands. I mean, who forgets his wife’s birthday? And how to back his trailer into the storage garage? And how to drive?
On Valentine’s Day in 2013, after the boys got on the school bus, Mark broke down in tears. In between muffled sobs, he said, “something is terribly wrong.” He couldn’t write his name on the Valentine’s Day Card he bought me. He showed me the squiggly vertical lines where his name should have been.
I paid attention this time.
We hightailed it to the emergency room where we discovered the awful truth about his memory lapses.
My husband had a brain tumor.
The Death Sentence
Mark’s brain tumor diagnosis was terminal. A Stage 4 Glioblastoma is a death sentence and the doctor made no attempt to hide the truth. After reviewing the CT scan he said, “you have 12-15 months to live. Please treat each day going forward as a gift.”
We looked at each other and shook our heads. I asked the doctor, “What do you mean he only has 12-15 months to live? What the fuck does that even mean?”
The doctor explained that Mark’s brain tumor was the kind that keeps coming back no matter how many times you cut it out. No matter how much or what kind of chemo and radiation therapy you choose, the tumor grows and wraps its tentacles around parts of the brain no doctor can touch.
The kind of tumor that makes you cram 30 years worth of living into as many months as the most aggressive, lethal kind of brain tumor allows.
The kind of brain tumor that kills you.
Drastic Changes to Our Family
Because Mark was self-employed and supported our family he asked me to take over running his business while he was sick. To say I was vehemently opposed is an understatement. I knew nothing about chemicals, nothing about the metal finishing industry and nothing about sales.
But, we had to pay the bills and his customers needed products. A death sentence doesn’t give you much time for contemplation, so I jumped in and started from scratch by reorganizing and electronically enabling Mark’s accounting system. I learned about the raw materials and emulsifiers that went into his rust preventative products, how to order material, and what was required to blend it.
Math isn’t my strong suit, but I learned how to translate formulas from pounds to gallons and how to price products based on ingredients, container types, and shipping times.
I made sales calls knowing virtually nothing about the chemistry side of the business.
I learned how to run the business at the same time I was trying to keep my husband alive. We still had to deal with surgeries and doctor visits and chemo pills and radiation appointments.
While I’m typically more of a “glass-half-full” optimist, it was admittedly difficult to remain upbeat while working in addition to navigating the cruel world of insurance coverage, prescription medication charts, clinical trials, and all things medical.
I experienced workloads most people will never know from running the business, taking care of a dying husband and trying to keep my kids’ lives as normal as possible. I went from a stay-at-home mom who cooked homemade meals and incessantly volunteered at school to a working mom who made boxed macaroni and cheese for dinner and barely knew my sons’ teachers.
Our lives would never be the same.
The Countdown to Death
Mark had surgery to remove the tumor, but, like the doctor said, it grew back. He tried chemo and radiation, but it did little to deter the rapid growth. He wasn’t a viable candidate for the relatively few clinical trials available because he had the worst mutation of the worst tumor.
We told the kids their dad had a brain tumor and they knew all about his doctor visits and treatments, but we didn’t tell them at first that his diagnosis was terminal. We knew he’d die from the tumor but we didn’t want to put that burden of knowledge on the kids until absolutely necessary.
I evaded questions from my kids about their dad’s prognosis. However, I knew our timeframe was getting shorter and shorter when my older son said, “Mom, I think you need to find a new doctor. The doctor you have isn’t doing a very good job. If he’s not fixing the brain tumor you need to find a doctor who will.”
In December of 2013, almost nine months after his diagnosis and subsequent non-working treatments, it was time to tell the boys. Mark’s demeanor changed day-by-day from nice and helpful to mean and derogatory. His tumor encroached on his brain and affected his functioning, coherence, and mood. Mark yelled and screamed a lot and I didn’t want the boys to be mad at their dad and then regret not being more sympathetic once they knew the truth. We had to tell them.
I went to a grief counselor who instructed me to tell the boys in plain English that their dad was going to die. She said to use the words death and dying. Speak clearly, she said. Don’t beat around the bush, she said. I practiced what I would say.
We sat down after dinner one night and I started to explain to the boys how their dad’s tumor would never go away. It would keep growing and growing. I said there was no way to fix it. No way to stop it. No cure.
“What do you mean it won’t go away?” the boys asked.
“What do you mean there’s no cure?”
As many times as I prepared myself for this conversation, I stumbled on my words. Either I mumbled or no words came out at all. I couldn’t say what I planned to say. I couldn’t say what the grief counselor told me to say. I tried.
I opened my mouth and nothing came out.
When my older son pressed me again and again, “Mom, what does this mean?” my husband’s voice took over the conversation.
“It means I’m going to die,” he said.
His words smacked into us like a sucker punch to the gut and sucked the air clean out of the room.
For a split second the boys looked to me for reassurance that their dad couldn’t possibly be serious. They searched my eyes for signs that what they heard wasn’t true. When I closed my eyes and started to rub my temples, they screamed. I’ll never forget the sickening sounds of their sobs and wails.
No words exist to describe the horror of telling your children their dad is going to die. I don’t wish that conversation on my worst enemy.
On December 30, 2013, we saw Mark’s doctor who told me he only had about 2-3 months left to live. His scans showed remarkable tumor growth. The doctor held up a pen and asked Mark what it was. “I don’t understand the question,” Mark said. The doctor held up a glass and asked Mark what it was. “I don’t know what you mean,” he said.
Mark was unable to identify a tie, desk chair or his shoes.
The Beginning of the End
In January 2014, my anxiety grew exponentially knowing that Mark’s days were numbered. He was clear and coherent one day and completely despondent the next. It was getting harder to take care of him and I dreaded the potential for seizures. The doctor said if he started to have seizures I should not call 911 because they couldn’t do anything for him. The doctor assured me I should let the seizure run its course.
On January 16th we spent three hours at the University of Michigan for one of Mark’s chemotherapy injections. The usual 45-minute drive home took three hours because of icy roads and snow-related backups. The boys were scheduled for ski lessons that night and Mark didn’t want to cancel.
The ski hill is only five minutes from our house, so after we got home and grabbed a quick dinner, we packed the boys up and headed out for the lesson. Mark was talkative and in his element surrounded by the other dad’s schlepping their kids to ski lessons every week.
After we go home we put the kids straight to bed. Mark decided to stay up and watch TV. I went to bed around 10:00 p.m. because I was exhausted and freezing cold. I fell asleep quickly.
A little after 11:00 p.m., my older son woke me up and said, “Mom, I heard a really loud thump. I don’t know if Dad’s OK.”
I looked over and Mark wasn’t in bed so we headed downstairs to see what was going on. All the lights were off and Mark wasn’t watching TV in the living room where I left him. The basement door was ajar but the lights were off down there, too. I heard what I thought was loud snoring and I figured Mark went down there to sleep. But, my son insisted he heard a loud thump so he wanted to check it out.
When I turned on the basement lights we saw Mark lying at the base of the stairs.
“Mom, we need to call 911,” my son said.
I didn’t know whether or not Mark was having a seizure. I remembered the doctor’s advice about not calling 911 for a seizure. I ran to the bottom of the stairs, tried to decipher the situation and realized the snoring I heard was actually Mark’s impaired breathing. I turned him on his side, saw a pool of blood beneath his head and reached for the phone.
The EMTs rushed Mark to the nearest trauma center. He suffered from an acute subdural hematoma for which the doctor performed a craniotomy and removed part of his skull. The ER doctor said this type of hematoma often results in brain injury and may lead to death. He also said if he Mark made it through the surgery he would require months of rehabilitation.
Only we knew he didn’t have months to spare.
Mark made it through the surgery but his right side was paralyzed and he couldn’t eat, drink or swallow on his own. He couldn’t talk. The nurses tied Mark’s left hand to the hospital bed because he kept trying to remove all of his tubes with his one free hand.
Why We All Need Advanced Directives
After a week, I grew increasingly concerned about Mark’s demeanor. He had a rectal catheter and his room smelled like feces all day. He couldn’t communicate. Feeding tubes provided nourishment because he couldn’t eat on his own. No one could really assess his mental ability because there was no way to run any tests in his condition. He stared off into space most days.
I tried holding Mark’s hand one day but he swatted my hand away.
“Please don’t be mad at me,” I whispered. “I’m doing the best I can.”
Mark couldn’t talk but his eyes told me everything I needed to know. He glared at me and pointed with his left, un-paralyzed, pointer finger. He smacked his hand on the bed, pointed his finger at me again and moved his hand from side-to-side as if to say, “enough.”
I went home that night and reread Mark’s Health Care Declaration. I knew what his wishes were because we talked about it so many times. I knew what he wanted. But I had to read it about twenty-five times to let it really sink in.
Mark signed a statement that read:
“I do not want to prolong my life by providing life-sustaining treatment if I am terminally ill and life-sustaining procedures would serve only to artificially delay my death or under any circumstances where my medical condition is such that the burdens of treatment outweigh expected benefits. In weighing the burdens and benefits of treatment, I want my Patient Advocate to consider the relief of suffering and the quality of my life as well as the extent of possibly prolonging my life. I understand that this decision could or would allow me to die.”
I was his Patient Advocate.
He told me with his eyes and his finger-pointing that I wasn’t doing my job. He was terminally ill. The feeding tube artificially delayed his death. The burdens of treatment outweighed the expected benefits. This was not a gray area. His wishes were all laid out right there in black and white.
The next day I went to the hospital and began filling out the paperwork to release him and bring him home with Hospice.
A Peaceful Death
Mark smiled for the first time when he saw the hospital bed we had set up in the basement. He was so glad to be home. He fell into a deep sleep and I continued to administer the medications the hospice nurse gave me.
The boys and I and Mark’s parents each took turns sitting with him, holding his hand and telling stories. He never opened his eyes again after that first day home.
He died four days later.
I knew Mark wasn’t in pain. I knew he was at peace. And, I knew I did the right thing leaving the hospital. He died a quiet, tranquil death because he was where he was supposed to be.
Happy at home and surrounded by his loved ones.
What’s Happening Now
Mark’s death left a gaping hole in our hearts and the boys and I are navigating our grief journey the best we can. We have good days and bad days just like everyone else.
I’m still running the chemical business. I can’t stand the thought of closing the company he established and worked so hard to build.
You can read about how I’m navigating widowhood by perusing the rest of the site. I think Mark would be very proud of the website I’ve built. He’d be so glad to know I’m writing again.
He was always a big fan of my stories.