Daughtering - Part 1 of the Behind the Scenes Story

The term parenting is technically defined as the act of being a mother or father to a child; it means to take care of the person or people to whom you serve as the parent.

So why isn’t there a parallel term for taking care of one’s parent – sonning, or, in my case, daughtering?

The way I can daughter my dad now is by telling his story.  Not just the one from the ten weeks when he was sick, but his whole story, or at least what I know of it. 

During the time my dad was sick, I posted updates regularly on CarePages for friends and family members to keep up with what was going on with Dad.   As I said here, for the first nine weeks after Dad was diagnosed with cancer, we chose to view his illness as a challenge instead of a catastrophe. The CarePages updates focused on what was going right and on the Hope for which we were so very desperate.   But there was lots going on behind the scenes and on the sidelines besides what was posted then, and I feel like this may be the time to begin to tell that part of the story.

This is a sad story, to be sure, but it is also one of Hope and Spirit.  It’s about tenacity and courage and toughness, not just tragedy.  It’s about Love and, of course, Perspective.  It’s about what we learned, not just about cancer but about my dad, about each other, and about ourselves.  It’s about how cancer sucks – it really, really SUCKS! – but WAY more than that, it’s about the strength of a man who wants to protect his family and of a family that wants to protect that man.

 On October 23, 2010, my 66 year-old dad was out on an eight-mile run.  About halfway through the run, he became disoriented.  He stopped at a traffic light but was unsure of which way to go to get home from there.   Fast-forward through a helpful couple who noticed Dad’s distress and called an ambulance, to a transport to a small hospital where a “mass” was detected during an emergency CT scan in his brain, and then to another ambulance ride to a large hospital that was equipped with a Neuro-ICU.   During that flurry of activity, our lives changed forever, and we didn’t even know it was happening. 

My mom was out of town, but luckily her two sisters were contacted and were nearby, and they raced to the hospital to be with Dad while Mom scrambled over the next few hours to get there.  When Dad arrived at the second hospital, he was fast-tracked for an MRI.  Once inside the MRI tube, Dad had an extended grand mal seizure.  The medical team got him out of the tube and performed CPR for several minutes before Dad was intubated and hooked up to a ventilator.  He was transported to the Neuro-ICU, which is where he was when my mom and my youngest sister arrived.  He was sedated and stayed hooked up to lots of IV’s, monitors, and machines overnight, and they stayed by his side, in shock, watching and waiting, a rough beginning of the uphill battle to come.

I think a lot about what went on inside that MRI tube that day.  I’m not sure why; I feel like thinking about that is something I should be moving past by now in the grief process.  But it was such a turning point for Dad, and for all of us who love him, like a Time Machine of sorts.  He went in looking like, acting like, and living like a person many years younger than he was, with a little numbness and confusion, and came out decades older, with a malignant brain tumor and many problems with motor skills, sensation, visual-perception, and memory and reasoning.  On one side of the tube he was a competitive athlete, working full-time, traveling and enjoying his life; on the other side he needed assistance to walk and was unable to perform the tasks necessary to work, drive a car, or live independently. 

Maybe those deficits were already bubbling at the surface and Cancer was like a bandit in the night that just uncovered them all at the same time.  Maybe the changes weren’t as defined as I remember them being at that point in time; perhaps they came in a few days later when he had brain surgery or over the upcoming weeks when the tumor was continuing to grow.  From my perspective, it just seems like a watershed moment, a time when we learned that a hurricane was coming but we couldn’t evacuate, a time when the future was being written, a time when things began to spin out of control, a time when Daughtering took on a whole new meaning.

Next ... Part 2, I Don't Know What's Happening

The Writing on the Wall

One of the things I am asked most often about my dad’s illness is if he had any symptoms prior to the day of his fateful run.

As I’ve written in previous entries and as anyone who knew him was aware, Dad was a long-time competitive athlete who thrived on pushing himself to the limit (and sometimes beyond).  He had a very high threshold for pain, which sometimes did not serve him well as he did not always know when to call it quits.  

Dad, getting medical attention after running his fastest-ever time in a marathon

One thing about him I haven’t mentioned, though, and something about himself that he readily admitted was that he was fairly uncoordinated, a fact that was especially surprising considering he was such a talented athlete.  Maybe it was because of this clumsiness or because he was often in a hurry to get somewhere (he hated to be late!), or maybe it was because the amount of time he spent on the road on his bike or running upped his odds statistically of having accidents and mishaps, but either way it wasn’t that unusual for him to have a scraped-up knee or a bloody elbow from a spill that he had taken. 

Dad did have a wreck on his bicycle about a week before he was diagnosed that resulted in some pretty impressive Road Rash on his left knee, shoulder, and arm.  He had taken a spill with the bike tipping to the left side, which frustrated him so much that he had taken his bicycle to the shop the next day to get them to check it to see if it was out of balance.  As we found out a short while later, it was actually Dad who was out of balance; he had left-sided weakness due to the tumor in his brain.  However, at the time, he chalked up the wreck to something being wrong with his bike or to the usual stuff with him, not paying attention to what he was doing, being in a rush, being a bit of a klutz, and/or heat and fatigue due to a very intense training regiment.

Dad, taking an ice-pack break during an ultra-marathon (Note the supplies on the table.)

 Dad had entered three shorter distance triathlons last summer as part of his preparation for the Ironman Triathlon for which he was registered in November, and in all three he did not feel well at the finish, which a doctor who checked him out in between races attributed to heat exhaustion and dehydration.

 

He finished the last tune-up race in mid-August by staggering over the last mile of the run portion and then falling across the finish line, at which point Mom took him over to the first aid tent where he got some fluids and a stern lecture from the medics there about the dangers of dehydration.  They told him he absolutely had to drink at least 10 cups of water daily in the days leading up to a big race when the temperature and humidity were as high as they had been.  Apparently, after drinking some Gatorade in the tent, Dad perked up enough to jokingly ask one of the medics if beer counts as a fluid, which they did not find funny.  And, as was typical for him, despite the finish line drama, he won his age division in this race, too, which he felt was a good indicator that he was right on target in his training program to get ready for the Ironman.

Dad, after again pushing himself to the limit

 Even though Dad was bald-headed for decades, in personality he oftentimes functioned like a Dizzy Blond.  He had been known to pull up in a parking lot or driveway, put the car in park, get out, and come into the house or his office, all without noticing that he hadn’t turned off the engine of the car!  So, if he was doing things like entering the house without closing the front door behind him or losing his wallet, it wasn’t really something we noticed as a Red Flag because of his past actions.

In late August, my dad went to visit his mother, who was ill and living in a nursing home near my parents’ house.  Not long after he got back home, the telephone rang, and it was one of the nurses at the nursing home letting him know that he had left one of his shoes there.  Evidently, he walked out of it in the hallway of the nursing home and, without noticing, walked to his car in the parking lot and drove home.  Again, we chalked it up to Dad just being Dad, not paying attention and being in a hurry to get somewhere.

A few weeks later, Dad drove my mom and one of my sisters to a restaurant near my parents’ house.  It was pouring down rain, and so, after Dad parked the car in the parking lot, they ran from the car to the door of the restaurant.  Once they got inside, Mom noticed that Dad didn’t have a shoe on his left foot.  She pointed it out to him, and he ran back to the car and found his shoe there.  Again, something that might have been alarming for someone else, but not that out of character for Dad. 

According to the resources we were given on brain tumors, the first symptoms are usually things like headaches, blurred vision, memory loss, behavioral changes, or seizures, all of which can be attributed to increased pressure within the brain.  Other symptoms (depending on the location and size of the tumor) can be nausea, drowsiness, weakness or impairment in sensation on one side of the body, or language impairment.

Even with the 20/20 hindsight that we had once the diagnosis was made, of these, the only symptom that Dad had before the day his tumor was diagnosed was impaired sensation on the left side of his body.

Out on his run that day, he got disoriented and had trouble finding the words he needed to respond to questions he was being asked by people around him.  He was taken by ambulance to a local hospital, where a CT scan revealed a “large mass in his brain.”  He was then transferred by ambulance to a large teaching medical center with a Neuro-ICU, and, en route, he had his first seizure.  The paramedics stabilized him and got him to the second hospital, where the medical staff quickly took him to get an MRI; however, during the test he suffered a second seizure, stopped breathing, and had to be resuscitated and put on a ventilator to help him breathe.

Even once the diagnosis had been made and we had read all about the Warning Signs, we still weren’t able to see The Writing on the Wall; even looking back with 20/20 hindsight, we still couldn’t identify what went wrong and when it had begun. 

No headaches, vision changes, etc.  He was still functioning at his 100%, which was equivalent to most other people's 150%.  We later found a To-Do List in his home office and noticed a slight difference in the legibility of his handwriting, which might have been related to the tumor since he was left-handed.  His typical writing style was of the Chicken Scratch variety, though, and so, as much as the falls and forgetting of the shoe were hard to definitively identify as a symptom, it was even harder to connect those dots, even given what we knew.  Literally, there really was no discernible Writing on the Wall.

We were told by several of Dad’s doctors that the type of brain cancer he had is extremely fast-growing; in fact, this type of tumor usually doubles in size about every three weeks.  The doctors said that the tumor very likely started to grow just a few months before the diagnosis.

And, while it seems like it would be somewhat comforting for us to know that there was no chance for prophecy, there wasn’t something there that we missed, and there was essentially no opportunity for early detection, it really isn’t comforting, because nothing is.  The only thing I see written on the wall is that it sucks and it isn’t right or fair, and I want my dad back!

The Beginning - One Day While On a Run

On Saturday, October 23, 2010, my husband picked me up at the airport as I returned from a business trip, and as soon as I was seated in the passenger seat he said, "Your dad was running this afternoon and had to be taken to the hospital by ambulance."

I need to give a little background to this:  my dad, an avid runner/biker/swimmer since before I was born, had had lots of accidents over the years related to his workout regiment.  I guess my family had become somewhat desensitized to it after so many close-calls and even a few "hits;" my dad was hit by a car while running at least twice that I know of and while biking at least three times, not to mention the many of emergencies like falls, sports injuries, and other things like heat exhaustion he'd had.  Like a cat with nine lives, somehow Dad always ended up ok after something happened to him, although a few times he'd ended up with broken bones and needing stitches or at least debris picked out of his skin as a result.

So the first thought that went through my head after the news was delivered was the question of whether he'd injured himself or if someone else was involved.  My husband told me the rest of the news that he had at the time, basically that Dad had some trouble on a run, had not been able to get in touch with Mom because she was out of town, had given out my aunt's phone number so she could be called, and then an ambulance had taken him to the hospital where he had had a seizure and a "large mass" had been detected in his brain.

Instinctively, I wanted to hurry to the hospital where he was, about a 3-hour drive from my house.  I frantically called my aunt, my Mom, and my siblings to see what everyone else knew and what they were all planning to do.  Somehow we decided that one of my sisters was going to drive Mom from where she was to the hospital, where they would meet my mom's two sisters, both of whom were at the hospital with Dad already.  My sister that lived in L.A. was going to get a flight the next morning so I would pick her up at the airport and we would go together to the hospital.  At the time, I was convinced that the findings were wrong or at least that if there was a mass in his brain it would turn out to be easily treatable; in my mind, it was a short-term emergency that we would just add to the list of things that he pulled through, and he would be back running in a few days.

I don't remember much of that night or the drive the next day.  I do remember that, as I was taking things out of one suitcase from the previous trip and throwing them into another that first night, I tossed in a spiral notebook because I'd read one time that when someone is in the hospital, everything should be recorded to watch for mistakes and to keep a log of things.  I remember thinking how completely surreal everything seemed as I picked up my sister at the airport and we drove to the hospital.  The shock was all-consuming; it was easy enough to move forward because we didn't really think this stuff was happening. Dad was awake and alert and evidently had been planning to play a joke on us, and so when we walked into his room in the Neuro-ICU, he acted like he didn't recognize us.  Our other sister and our mom recognized that we were about to panic, and they "busted" Dad.  It made us feel good, though, to see that he was up to his usual pranks, even though he seemed a little confused as to what had happened that resulted in his ending up in the hospital and very noticeably did not have any sensation in his left arm or leg.

We were told that the neurosurgeon would be doing a biopsy in a few days and thus began the waiting and the slow-motion panicking as we tried to find out everything we could about what was happening and what was going to happen.  We were told by the surgeon that cancer was suspected and even told what type of cancer he thought it was, glioblastoma multiforma.  Denial had its arms wrapped tightly around us, which was comforting and helpful in many ways at the time.  "THIS IS NOT HAPPENING, OR IF IT IS, THEY ARE WRONG IT ISN'T CANCER" became our mantra.

We didn't want anyone to be negative in front of Dad; he asked over and over what was wrong with him and what was going to be done about it, at one point even saying "I get that it's a mass in my head, but I know it isn't cancer!  I'm way too lucky to end up with brain cancer."  We agreed with him wholeheartedly!


To read about what happened next in our story, click here.