Dad was known for pushing the envelope. To him, a little risk made for a lot more fun. Like walking boldly past the giant signs with the words “STOP Risk of Death” on a glacier in Canada, my brother and I happily in tow. And he was a “doer.” He always wanted to participate, not much for sitting around. When my equestrian drill team needed a dad to volunteer for part of the performance crew, not only did he step in but he took the whole crew over and made it even better. He kept himself fit and healthy so he could be as hands-on as he preferred. Majoring in all things “handyman,” there wasn’t a project he wouldn’t tackle. From being the general contractor in building our home to welding projects to farming, his skillset was broad and his work ethic ambitious. Living such an active life, he was known to say “I’ll never slow down, just keep going at 100% until I keel over!”
Despite Dad’s insistence and preparation to keep on living the life he loved, cancer had other plans. His fight started in 2012 when a car accident revealed a tumor on his kidney. It was large, but contained and after a full kidney removal he was deemed “cancer free.”
We were told that with renal cell cancer, symptoms don’t typically arise until survival rates are dismal. A truly silent killer. The doctors confirmed that without the car accident and resulting full-body MRI to look for additional injuries, Dad wouldn’t have lived more than a couple years. Cue giant sigh of relief, many thankful prayers, and renewed faith that everything happens for a reason.
Protocol is to continue cancer screenings annually for three years, then decrease in frequency or stop screenings altogether. For us, that protocol wasn’t enough. Year four, in 2016, Dad had the smallest of symptoms while visiting family in Texas. A lack of muscle control in his tongue that would come and go. Nothing overly concerning or problematic, more a nuisance. My older brother Ben was with him and relentlessly pushed for Dad to get it checked out.
Come to find, the intermittent numbness was being caused by a small tumor on his spine. One of six they eventually found throughout his upper body: spine, lungs and ribs. The cancer had returned and traveled through his blood stream, spreading in small, unperceivable ways.
Over the next almost two years, the most accurate term that describes our lives is: a roller coaster. With lots of lulls between the big highs and lows. Dad had already taken early retirement and when the diagnoses came, he turned cancer research into his new job. Professionally, he’d been an engineer, so one can imagine the detail and pragmatism involved. We were told his condition was terminal. That this would be what killed him, it was just a matter of how long it would take.
I remember the day I received that news. It was after the initial scans that showed the mass on his spine. The doctors had ordered a full body PET scan to follow the MRI and CAT scan as that would be able to tell us what we were really looking at. A meeting was set with his oncologist to discuss those results. Mom and Dad would attend. Ben was living out of state and I had responsibilities at work so we would both be phoned after the meeting. I anxiously waited for a call with the news while trying to stay productive at my desk. It could be nothing. It could be cancer. The pet scan was the only test that could definitively tell us. If it was the latter, I knew work would be the last place I’d want to be, so I covered my bases and warned my team that if the news was bad I’d be leaving for the day. The afternoon came and I hadn’t heard from Dad, so I called. Then I understood why he hadn’t made the call yet.
The news was bad. That was the only time I really witnessed an emotional response from my then 63-year-old father. He choked up as he shared his reaction: that it looked like his grandkids would grow up without a granddad, just like my brother and I.
How unfair is that?
Dad would have been an amazing grandpa. Gosh, would he have loved on those kids. I can just picture all the weekends they would have spent working on projects on the farm and baking Dad’s secret recipes. And he would have been at every activity, on top of all the times he’d volunteer to babysit.
As he said those words to me, the tone in his voice shared exactly what being a grandpa would have meant to him. And I lost it. I had shut my office door prior to making the call, and I kept it together long enough to hang up and then just sat alone and sobbed. After I don’t know how long, I sent a message to my team, left through a side door, and went home.
From then on, I felt different. I started waking up at night, not always with thoughts of Dad, just restless. I felt misaligned. Unsteady. I still don’t know exactly how to describe it. The closest I can get is that I just didn’t feel like “me” anymore.
Treatment began in the form of chemotherapy. Dad was lucky in that he faced few side effects for most of his fight. Looking at him, he sure didn’t look like he had cancer. He still had a full head of hair, felt pretty good, and was able to keep up with a lot of the activities he loved.
At this time the real thing that was slowing him down was a bum ankle. In his 2012 car accident, his entire ankle was fractured, requiring a lot of metal to put it back together. Even after the metal was removed and everything healed, it still caused him pain. He pursued various treatments such as stem cell shots and other therapies, but the more active he was, the more it gave him trouble. This was the first phase we had to watch of Dad’s compromised health. His project list grew shorter, more help was asked for, and he made the big switch of walking the golf course to always getting a cart.
Less than a year into treatment, we got results from an MRI scan after the culmination of a chemo regimen. And the doctor couldn’t believe it. All of Dad’s tumors had shrank in size, some rather significantly. It was on his birthday, August 18th, 2017, and we celebrated hearing the words that he may actually beat this thing.
Just four months later, Dad experienced what appeared to be a stroke. I got a call from Mom after he’d been admitted into the E.R., she explained the symptoms and I headed straight in. All we knew at that point was that it wasn’t a stroke and we were waiting on more tests. By this time, I was building my online business full-time so I packed up what I needed and set up shop at Dad’s bedside. The next day brought with it test results and the worst case scenario: we had a new tumor. And this time, it was in his brain.
Are you understanding the “roller coaster” reference I mentioned earlier yet?
For any of you who have had cancer touch your lives, you may know that when it spreads to the brain, that’s typically the last place it goes. It’s a sign that we’re nearing the end of the battle.
But Dad never did fall into the usual category.
The location of this tumor allowed for a surgical option. And sure enough, when they got in there, it was completely contained and they got it all. Minor, targeted radiation followed and we were back on track.
I should say, we were now on a different track. The damage to his brain from both the presence of the tumor and the resulting treatments took a toll. The left side of his body was severely hindered, and he began the process of retraining his muscles to do the most minor of movements. He received some guidance from a physical therapist but didn’t need any motivating, he was more eager to get better than anyone.
While Dad complained very little, this is where it began to hurt me to watch him struggle. Managing a bum ankle was one thing, but this was so much more than that. His balance, strength, cognitive function, it was all compromised. And through it all, he was able to demonstrate to me another lesson of mindset. I never saw him angry. Or withdrawn or resentful. He approached his increasing limitations with a heavy dose of realism. He accepted help. He adjusted his expectations. He gave himself three tries to figure something out or get something done. He laughed, or simply shook his head, at the increasing amount of little mistakes he would made.
As cancer treatment progressed, his body continued to weaken. While he did recover a large amount of function on his left side, it was never 100%. His gym routine was not yielding the same results and he was losing more strength, as his body was putting all it had left into fighting the disease.
Over this time, I was spending time at my parent’s house on a regular basis. Sometimes just for dinner or more often to help on a project. Ben, who was living outside Seattle at the time, was visiting home more frequently. We went on more trips as a family. We were preparing.
We’ve all heard the sentiment “live like you were dying.” It was eye opening to actually get to exist in that sentiment. It’s all true too. I’ve gained a much healthier respect for time now. And it makes me a little sad that it took this event for me to truly take it all to heart.
The start of summer 2018 brought with it the culmination of another chemo regimen and a new scan which revealed nine small tumors in his brain. In addition, new tumors and tumor growth were evident throughout his body. All of this was proof that the treatment was no longer working. The decision was made to do full-brain radiation and begin a new treatment plan.
Shortly into our new treatment, Dad developed pneumonia. Again, for anyone familiar, most cancer patients don’t actually die from the disease, but instead from complications; pneumonia being a prominent culprit. This was the week prior to a family reunion and county roundup in Dad’s hometown of Vega, Texas and there was no way he was going to miss it. He convinced the hospital to release him with the rest of his antibiotic treatment and that was that.
Understanding what the pneumonia may mean, Mom and I accompanied Dad and Ben to Texas. Normally we wait to see everyone at Christmas, but we knew this trip was going to be special. It hadn’t even been two weeks since I had last seen Dad, but it was jarring and incredibly emotional to see how quickly he had declined. Because of the aggressive radiation, all his hair was gone. He’d lost weight. It was starting to be difficult to carry on a conversation. He was spending more time resting. He now needed assistance to walk 100% of the time. He looked the part of a dying cancer patient, aside from his white cowboy hat and leather vest that he always traveled in, that is.
The time in Texas was so special. So incredibly hard and emotional, but such a gift. We were given one more opportunity for family pictures. One more game of Rumikub. One last weekend all together.
The most special event of the weekend was watching Dad drive a 1940s tractor he’d restored in the county parade. What made it so special? Knowing what it meant to him.
He’d spent hours rebuilding that old John Deere. And he’d been in that parade, pulling our family’s historic coal wagon for the kids to ride on, for years. He had decided that this tractor was just the upgrade we needed to round out the parade entry and he went to work. With the help of Ben and his brother James, they’d gotten it running and ready to debut in time for last year’s parade! But as luck would have it, a part broke on the way to the parade start and they had to revert back to the pickup to pull the wagon. No way was that going to happen twice.
We arrived in Texas on Thursday, August 9th and the parade was on Saturday. We settled in to our usual rooms at Grandma’s house. On Friday, Dad made sure to carve out time to test the tractor and make sure we we wouldn’t have a repeat of the year before. He was also testing to make sure he had the strength to drive it. James came over to Grandma’s and the two brothers, Mom and I headed out to get the thing started.
It turned out, it needed a bit of a jump start. But with some adjustments to the throttle and a tow from James’ truck, we had the engine going. For any who are unfamiliar with farm equipment, particularly old farm equipment, there’s nothing smooth about the ride. And in order to get this tractor on the road, rubber shells were installed on the back tires as to not leave divots in the pavement. Good for the asphalt, terrible for the driver. This caused the tractor to constantly bounce, and the seat sure didn’t have springs like it used to.
As I mentioned, Dad was already really weak at this time. We had to push while he pulled just to get himself into the seat of this dang thing. So Mom and I held our breath a bit watching Dad bounce around on the seat and use all his strength to turn the almost 80-year-old steering wheel. But he got it done and was confident to take the driver’s seat for the parade.
The drive from Grandma’s house to the parade start was a handful of blocks. James, Mom and I discussed and arranged a car to take Dad to the start so that he could preserve his strength for the parade itself, not spend it bouncing around some side streets with no one to wave at.
Saturday morning arrives. The house is bustling with more family showing up, candy being sorted to throw from the wagon and drinks planned for the lunchtime festivities. It came time to head to the start of the parade and James is set to deliver the tractor, wagon in tow. It was then that we suggested to Dad that he hop in the car and meet James in order to save his strength.
Now, it may seem very reasonable and even wise to follow this plan. It sure did to us. Anyone that observed Dad could see how weak he was. He was now relying on a walker the majority of the time and we’d even rounded up a wheelchair to use for that afternoon’s festivities, knowing there would be plenty of extra ground to cover. But ultimately, none of that mattered. That reality was irrelevant to this man who’s day consisted of one goal: to drive that tractor in his beloved parade for his friends and family to see. And in the process maintaining a tradition, maybe for the last time.
Our proposition was met with resistance, so much so that Ben spoke over the group and asked the only question that mattered: “Dad, would you like to drive the tractor down to the parade start?”
With a simple “Yes,” we were out the door.
It wasn’t about what made sense to us. Or what we thought we would do if we were him. Or ultimately what would make us feel better. His reaction said it all: our proposition was taking something away from him. Something that we had no right to take.
The parade, and the drive down, went wonderfully. Dad smiled and waved, absolutely beaming from atop that tractor. And Ben got to follow behind on a tractor of his own, making it a true family affair. Watching them both was such a gift and I will forever hold that picture in my mind. It truly was the most special part of the trip.
The most emotional part however, rocked me to my core.
The weekend’s festivities also included a golf tournament. Loving the game and having played all his life, this was always on Dad’s list, and Ben always played as well. Dad had brought his clubs but expressed some concerns about being able to play well, given his physical decline, so he wanted to go hit some balls before the tournament. We arrived in town on Thursday afternoon and the tournament was set to kick off that evening. So after a quick stop at Grandma’s to drop off some bags and say hello, Dad, Mom and I set out to the course.
By now, I knew the motions of setting the walker and helping Dad out of the car. He immediately pushed the walker to the side and headed straight for the driving range. Knowing his instability, and being closer, I walked alongside him and Mom followed with the clubs. We made it out of the parking lot and onto the grass where a small incline caused a few stumbling steps.
Up to this point, Dad had tripped, fallen or lost his balance a handful of times particularly since last December when they found the first brain tumor. I’d been there to catch him once, on the 4th of July, while we were standing in line at a BBQ truck. He was standing just off a curb. He stepped backward, caught his heel on the curb and luckily I was standing just behind him. Even at that point I weighed more than he did so I was able to get him back upright and we went on with our afternoon.
This time, he was walking ahead of me and the best I could do was slow the fall. Which, by itself, wasn’t a big deal. He kind of rolled into it and didn’t even come away with a scratch. What was a big deal, was all over his face.
He laid on the grass, flat on his back, eyes closed, catching his breath and not saying a word. I just sat down next to him. Mom rushed over and after seeing no blood, looked at me and neither one of us knew what to do. I watched his face as this newest realization washed over him: he would never play golf again.
What do you say in that moment?
He shed no tears. No significant words were spoken. We brought the walker over and helped him up. Mom suggested trying the putting green so we took a few steps that way. Dad just stopped and said “I don’t want to do this.” So we loaded up and headed back to Grandma’s.
On the drive he made a couple phone calls to let the guys know he wouldn’t be able to play. He was pretty matter of fact about it, that he was just too weak and that he’d see them at the parade. Listening to his side of the conversation was so difficult. The reality continuing to sink in.
Back at the house Dad was quiet. I got him settled on the couch and excused myself upstairs for a few minutes alone to let what just happened catch up with me. I had developed a skill of keeping it pretty together in front of Dad, and sometimes Mom, wanting to protect them from my sadness because they already had enough of their own. As soon as I closed the bedroom door upstairs I let the tears take over. This was bad. He was so much worse. And losing this sport he loved felt like a gut punch.
After my tears dried and eyes were almost back to white instead of red, I came back down to discover that Dad too had made his way upstairs. Unusual given the effort required, even with the installed lift chair, and that it meant he’d be alone. I did a quick check and found him leaving a voicemail for a good friend of his, asking to call as soon as he could. Understanding his desire for privacy, I headed back downstairs. It was about start time for the golf tournament, which Ben was still set to play in, so he headed out the door. On his way out, he had checked on Dad and called to share that Dad seemed to not be in a good place. It appeared the events of the afternoon were hitting him hard too. I talked with Mom and she planned to give him a bit more time then head up to see her husband.
In his rush to get to the tournament, Ben had forgotten his fee to play so he called again asking if someone could bring the money to him. I volunteered and headed to the course. Him and I hadn’t spoken about what had happened there earlier that afternoon, but I assumed Mom had filled him in. I arrived, cash in hand. Through the car window Ben asked how I was doing and I couldn’t even get a word out before I started crying. It was all so fresh and the significance of the physical decline I’d seen that day was still sinking in. I remember being able to say something about how scary this rapid progression was and Ben just hugged me.
Seeing him alone on his cart, next to Dad’s empty seat, I asked if he wanted any company. He quickly said yes and I headed to the clubhouse to stock up on some beer and meet him at the next hole. Turns out, it was a private club where you bring your own booze, but the manager knew Dad (everybody in Vega did) and was actually one of the people Dad had called earlier that day. So he insisted on giving Ben and I beers out of his own cooler and wouldn’t take any of the cash I’d brought, not for drinks or for the tournament fees.
The tournament ended up getting rained out just a few holes later, but just being on that course, with Ben and some of Dad’s long time friends, was still pretty great.
On Monday, Dad, Mom and I returned to Idaho and Ben to Seattle. I resumed work Tuesday and was hitting a good groove by Thursday, when we had a conference call with the doctor. This had been scheduled prior to the trip and with Dad’s significant physical decline we knew it’d be an important one. Ben and I arranged to conference in while Mom was alongside Dad in the room.
The doctor tried to be hopeful but the facts simply weren’t in our favor. Mom shared that even since arriving back home Dad was needing more and more support. Such a rapid decline indicated that the latest treatment wasn’t slowing the progression of the disease either. The only way we’d know for sure would be with new tests. So we got those scheduled for the following week as well as some physical and cognitive therapies for the very next day. Mom and I discussed our schedules and established that between the two of us, we’d begin providing round-the-clock care for Dad. So the next day I packed up a bag, and my Great Dane named Lucy, and moved back in to my childhood home.
That Saturday was Dad’s birthday. In addition to cards, gifts and dessert, it was tradition to always head to the county fair. While Dad seemed fatigued at the very thought, we made plans to go.
The fatigue was so hard to watch. A man, once so active and full of life, was fading in front of me. He was losing his ability to focus. A simple conversation was tiresome. He had been able to move around on his own with the walker, but that quickly transitioned to a wheelchair and then requiring assistance to just sit down and stand up. His body was failing him on every front. And I was losing pieces of the father I knew.
It was hard to tell, but I think he enjoyed our time at the fair that day.
That following Monday morning, we went in for the first of our scheduled tests. From that appointment, they sent us straight to the emergency room. Dad’s oxygen level was dangerously low. Come to find, the pneumonia had never resolved and ultimately worsened, and we prepared for another hospital stay.
The initial evaluations were not positive. Ben and Mom immediately planned leave from work and we took up residency at St Al’s. Those five and a half days in the hospital were the hardest days I’ve ever faced. Each day, we watched Dad get worse. The progression was almost methodical. We learned what each number on the monitors meant, and saw each one become worse and worse. We heard the update each day that the pneumonia had progressed. He developed additional complications with his heart and another infection. His body had no defenses left. He could no longer carry a conversation, but could provide a few word answers to direct questions. He recognized familiar faces and would show a small reaction on his face when stories were shared.
This cognitive decline was possibly the hardest part of those days. Watching the physical decline was one thing. It had been hard at home when I was helping him through his physical and cognitive therapy exercises, I felt like a cheerleader having to fake my positivity and encouragement as I asked him to complete the simplest of tasks. Until even that progressed to where he only wanted to lay down and rest all day. Then at the hospital when I had to feed him because he didn’t have the strength. All of that was hard.
But when I couldn’t talk to my Dad anymore, that was something entirely different.
I’ll never forget the conversations we had to have about ending Dad’s life. I would not wish that particular conversation on anyone. Dad was clear in his advance directive that no artificial life support be used. And given his cognitive decline, it was evident that there may come a time he wouldn’t be able to make his own decision.
We spoke as a family, as a family with the doctor, with Dad and the doctor, and then even just Dad and the doctor, covering the same information, answering questions and gaining clarity. Mom, Ben and I understood the progression ahead of us: Dad’s body was using every ounce of energy and strength just to breath. In time, it was going to simply give out. They were using a breathing machine, called a BiPAP, which was helping to do some of the work for him, but there was nothing more they could do, the next step would be considered artificial life support. The doctor was clear that when we get to that point, where he would typically make the switch to a ventilator, that’s when we should begin preparing for the end; that it could come in a matter of minutes to hours.
This was Friday. Dad was still somewhat responsive to direct questions and therefore still able to direct his own medical care. In the conversations with the doctor, both privately and with the rest of us in the room, Dad was unable to acknowledge the reality. The questions were asked, but Dad formed no words in response. He eventually asked a couple questions, but they were about different cancer treatment options that simply weren’t relevant anymore. The doctor was looking for an answer regarding immediate treatment: would Dad prefer to continue the aggressive pneumonia treatments or stop those and focus on comfort care only. We explained both options a few different ways. That his fate was sealed, it came down to how he wanted to live his final days. And still, we did not receive an answer. Another conversation with the doctor outside of Dad’s room revealed this to be common. A man is facing death and you’re asking him if he wants to keep fighting in discomfort/pain and live a little longer or die sooner but with more comfort.
How are you supposed to answer that? Either way requires acceptance of death. And soon.
So we stopped asking. We went back in to just be with Dad. The BiPAP machine required a large mask that made it difficult for Dad to communicate and impossible to eat, with the alternative being a small nasal oxygen tube. The day before we had switched off the BiPAP for dinner and within 10 minutes his oxygen levels were so low the nurse made us switch back, prioritizing breathing over eating. Those were the kind of realities we were facing. So instead of asking the same big question, we simply asked if he’d rather have the nasal oxygen so he could communicate better. He said yes.
We knew that that, in itself, was making a decision. And it was one we – Ben, Mom and I – accepted the consequences of. We’d rather his time left be spent how he wanted it. He had friends and family coming by to see him and those appeared to be the only highlights in his days anymore. So that mattered more. Even if that meant our clock had started.
Or so we thought. In true Dad fashion, he defied the doctor and his levels stayed just fine! He remained stable all of Friday. We still faced elements of decline such as a fever and inability to eat, but he stayed with us. Two good friends had driven in from Colorado that day, and we gathered as a group late that night telling stories and reminiscing. Dad was responsive and present.
And then everyone left for the night. Except Mom; she’d been staying on the makeshift bed in his room.
And then Dad went to sleep.
And he never woke up.
His levels began to decline overnight. The next morning, the time came. The doctor was clear and compassionate. He told us again what to expect as Dad passed, and we prepared.
It all happened so fast. So peacefully. Not in hours, truly just minutes. It was crushing.
And just like that, it was over.
The hardest week of my life came to a close, with a full gamut of emotions. Among them, relief. Dad was no longer living a life that wasn’t his. And we were no longer observers of his suffering.
It was a long, slow goodbye. Dad was never one to openly discuss feelings or emotions, so our story didn’t include any tearful final sentiments. He lived his life in a way that showed you how he felt so for me, that wasn’t needed. And we all knew where this was taking us, so I guess we’d already been preparing for goodbye in our own ways. Preparing yes, but still not ready. However, we knew it was time and that was all the comfort we could hope for.