Dog Tags

Sometimes when I think back to during the time when my dad was sick, I remember a detail that I had forgotten or overlooked in my memories before.  

Today I remembered his dog tags.

When I was growing up, whenever I asked my dad about his experience serving in Vietnam, he always talked about how his job there was to guard a building with weapons in it, often on an overnight shift.  

My dad was never a "night owl;" as far back as I can remember, he was much more of a morning person, and I guess that was true when he was in the service, too, because he often commented when he talked about that time about how hard it was for him to stay awake on his overnight shifts.  He said he usually ran around and around the building he was assigned to guard so that he would stay awake and alert during those shifts.  The only problem with this plan, he reported, was that he had to wear his dog tags at all times and, as they hung from the chain around his neck, they drove him crazy bouncing against his chest as he ran.  Ever the improviser, though, he thought of a solution to this problem too: he took the dog tags off from around his neck and put them in his pants - in his jock strap, to be exact. 

It's kind of funny to think that a person can be proud of someone else before that person was even born or before they knew each other, but I know it's possible, because, picturing my dad as a young soldier in a foreign land, before I was born, doing what he had to do to get his job done and to defend our country, I feel such a sense of pride and respect, the same pride and respect that I have had for him throughout my life. 

But those dog tags from Dad's days in Vietnam aren't the ones I think about most often these days.  The dog tags on my mind are the ones that Dad wore on a chain around his neck as a 66 year-old man as he trained for the Ironman triathlon.  He tucked those into his shirt as he rode his bike or ran, and, the day before he became disoriented on a run and our campaign against his brain cancer began, the chain that held those dog tags broke.  And so, on that fateful day, he set out for the first time in many months without any form of identification at all.  

I think when most people think about dog tags, they think about toughness.  That's what I think about, too, because it was that, along with his strength and resilience that day that allowed Dad to dig deep enough so that, even in his state of confusion coming from the tumor the size of a racquetball in his brain, he could remember not just his home phone number (which was called first by the police but went unanswered because my mom was out of town) but also my aunt's cell phone number, which he also recalled and then gave to the police who had been called to the scene because he somehow also remembered that my mom was out of town that day and realized he needed to call someone local.

I have spent time, some while Dad was sick and even more since he went on ahead, thinking about how things would have likely gone had he not had the fortitude to pull out that information in those few moments before he was taken to the hospital by ambulance, before he had a couple of seizures, and before he quit breathing and had to be put on life support temporarily until he could be stabilized.  It is nothing short of terrifying to think that all of that would have been going on and no one in our family would have been able to be notified so that we could all get there to be with him.  It's horrifying to think about the fact that he would have been a Missing Person for an undetermined amount of time, because, with my mom out of town overnight that night, it is highly likely that no one would have realized that he didn't make it home after his run that afternoon.  We would not have known that anything out of the ordinary was going on.  Again and again, it hits me that, even with as bad as it was when he first got sick and throughout his illness, it could have been worse.  At least we knew where he was, and what was going on with him, and at least we were able to be with him. 

Dad, wearing the dog tags, competing in what ended up being his last race, one month prior to his diagnosis of brain cancer

In the days just before and just after his surgery, Dad worried a lot about what he called "loose ends."  As it would be for any of us whose life was put on hold in the blink of an eye, it was unnerving and extremely anxiety-causing for Dad that he had not been able to prepare for the time he was having to miss work and everything else for which he considered himself to be responsible.  In the midst of the constant stream of worries he had about his health and about needing to take care of the responsibilities in his personal and professional roles in life, he said he wanted to get the chain that had held his dog tags fixed, "so that I'll have it ready as soon as I can get back on the road."

And so, sitting in the hospital room with him in the Neuro-ICU, I searched on the Internet and found a company that sold replacement chains and ordered one for him; he was visibly relieved when I told him that a new chain was being sent to him in the mail.  And that's where the meaning of those dog tags deepens in our story; instead of standing only for toughness, Dad's dog tags also represented Hopefulness, and we desperately needed everything we could get to bolster both of those qualities as we entered into a more grueling battle than any of us could even imagine at that point.

Part 17 - Going Home

Continued from Part 16

My middle sister spent the night with Dad at the rehab facility the night before he was to be discharged; Dad was very anxious and antsy, as he put it, "to get the show on the road."  When Mom arrived the next morning, she and my sister took turns loading the car, supervising Dad, and getting the last-minute discharge papers and instructions.  The amount of stuff that had been amassed over the 20-day stay was incredible.  Excitement (and fatigue) was in the air as they took off down the road for the 45-minute drive home.  

As I’ve mentioned, some necessary changes had been made to my parents’ house over the past month while Dad had been away.  My brother-in-law and my husband had mounted safety bars in two bathrooms and had re-arranged the furniture in the den including removing or taping down rugs for smoother transitions.  I had taped reminder notes for Dad around the house; for example, one on the door from the garage into the house said “UP with RIGHT LEG FIRST” to indicate how he should safely get up the single step into the house on the walker.  Dad pretty much barreled in; he literally couldn't wait to get settled in his favorite recliner in the den with the newspaper and a Foster’s.  

Dad had a headache pretty much all the time at this point; he would occasionally mention it, but generally he only admitted that he was in pain when he was directly asked.  He was on some pretty strong pain medication that we had been told would make him drowsy, but we noticed that it actually hyped him up most of the time, although at the same time it didn't cut through the constant exhaustion that followed him around.  

My husband, my daughters, and I drove from out of town to join my parents and my sister and her daughters before suppertime that day.  I remember thinking that everything looked so normal on the surface when we walked in the door of my parents’ house.  As I cut off the hospital bracelet still on Dad’s wrist, I held back tears of gratitude that he was home and silently made a wish that he would never have to wear one again.  

The physical therapist at the rehab center had suggested that we get a recumbent bike for Dad at home, and so we bought a slightly-used one and set it up in the dining room.  “I’m so ready to get back on the bike!” Dad said, although he begged off when we asked if he wanted to try it right then.  As I watched him give it his all to go from the den to the bedroom on his walker, it hit me that Dad might possibly never be able to go upstairs in his own house again.  That was an easy enough bargain, though, I thought, as long as he could start feeling better and get some better quality of life on the ground level.  To accommodate all of the spend-the-night guests there, we rearranged Dad’s upstairs office into a makeshift bedroom.  We moved things around just a little that day, just as our ideas for our family’s future were shifting a little at a time.  

Spaghetti was served for supper that night, but Dad said he wasn’t hungry; he ate only some of what was put in front of him and then later that night kept asking his granddaughters to please bring him “just a little piece of chocolate,” which they delighted in doing, over and over, per his request.  He was glad to have my husband join him in having a beer after supper (we allowed him two beers that day - it was a special occasion!).  Sitting at the kitchen table pouring over the discharge instructions from the rehab facility,I created a checklist listing all medicines, their dosages, and at what time each was to be taken each day, and I felt like I actually had some control over what was going on for the first time since Dad had gotten sick.   

On Saturday morning, Dad’s long-awaited reward arrived:  Foster the Cat!  Foster took a couple of laps around the house to investigate and then settled in on Dad’s lap.  He seemed to instinctively understand that he was Dad's cat, and Dad was his person.  He didn’t seem to mind the two greyhounds at all and was quite content with his new home.  Dad said, “This cat is so adorable!  He’s perfect!”  The kids picked out an orange and blue cat collar and other necessary feline supplies at the store.  When they showed Dad the collar, for some reason he thought it was a bracelet for him, and he said, “Thanks! Auburn colors!” and then proceeded to wear it for the next few days. 

On Saturday afternoon, the home health nurse came to do an assessment to determine if Dad would get therapy and/or nursing support at home.  Mom and I sat with her at the kitchen table and answered questions and filled out paperwork while my sister and the kids entertained (and supervised) Dad, who greeted the nurse when she came in but seemed either unaware or uninterested in the reason for her visit.  When she asked Dad about his pain level, and he told her, “I feel pretty good!” despite the fact that he had rated his headache pain at a 5 or 6 out of 10 since he had gotten home.  

Several times that day, Dad said he wanted to go to the bedroom and lie down.  Sleep continued to elude him, and he was constantly tired.  When he was in the den in the middle of all the action, he seemed distracted and overloaded.  “Sorry, but there are too many people in the room for me,” he said at one point.  We wanted him to be in the middle of the conversation like he typically would be, but we helped him into the bedroom for some quiet time, although at least one of us kept an eye on him all the time for safety reasons.

Dad, on his first full day home from rehab,
relaxing with Foster the Cat and Buddy the Dog
(Note the "bracelet" Dad is wearing.) 

In between the welcome-home festivities and the road trip preparations, we took turns visiting my grandmother at the nursing home.  Like we had done as much as possible since Dad had gotten sick, we reported back to him about what was going on with Grandmom.  He was very worried about his mom and was concerned that she might be upset that he hadn’t been to see her over the past month.  We assured him that she was ok and that she didn't seem to realize how much time had gone by since he was last there.  Even though my parents’ house and the nursing home were only about ten miles apart, it seemed like they were in two different worlds.  We had decided early on in Dad’s illness not to tell Grandmom about Dad’s sickness; she was very confused, and we felt that as long as we were able to continue to visit her and to make sure she was well cared for, she was better off not having to know about Dad’s health.  When I stopped by the nurses’ station at the nursing home, the staff members there were visibly shocked when I told them that Dad had cancer.  “That bald guy has cancer?” one of the nursing assistants said incredulously.  “He looks so healthy, and he’s always so energetic and cheerful!”  They promised to keep a careful watch on Grandmom and to make a note in her chart about the new chain-of-command of phone numbers should they need to call us about anything.

A birthday celebration for Mom

Sunday was Mom’s birthday; Dad had told me a few days before that he thought he remembered buying her a ring for her birthday before he got sick, but he couldn’t remember where he’d put it, if he had indeed made the purchase.  “Maybe I just dreamed that I bought it, or maybe I just meant to do it and then I ran out of time,” he said.  He told us to get money out of his wallet and buy her something on his behalf, and so we bought her a spa gift certificate from him and we celebrated the best that we could, grateful to be together as a family and happy that Dad was home.  

That afternoon and evening, armed with our Notebook filled with questions to ask at the Brain Tumor Clinic at Duke, we packed and prepared for our journey to Durham, NC.  The Notebook served as kind of a coat of armor for us; I felt a little better just carrying it around with me.  Our lists were organized by topic; we had one or more pages filled with things to find out about under the categories like “Genetic Approaches,” “Holistic Treatment Options,” “Clinical Trial Options,” “Prognostic Indicators,” and “Off-label Medication Treatments.”  Between us, we had done hundreds of hours of reading about possible treatments for this type of Brain Cancer over the past four weeks.  We were as fully invested as we could be, and this was a fight we intended to win.  I wrote on the cover of the Notebook:  Our goal is to give Dad full access to the best new treatments, in optimum combinations, as quickly as possible, to support him in quality time for as long as possible.

My middle sister, my mom, and I went to bed soon after Dad that night (clarification: he was already in bed fretting about not being able to sleep, again, and we agreed to take turns sitting up with him throughout the night).  We felt like warriors, on a quest for the best weapons we could get our hands on as we marched into battle.

Up next ... Part 18 - The Long And Winding Road

Once More

You sat me on the rocking horse

And kneeled on the floor to the side.

I pretended I was a jockey in a race

And had a grin on my face so wide.

It’s ok, Dad, I said,

Now you can let go.
I’m ready, and you’ve taught me

Just what I need to know.

There in the front yard
Sitting proudly on my bike
A young girl’s first taste
Of what freedom’s really like

You ran along beside me
With one hand on the seat
I smiled and pedaled harder
And headed for the street.

It’s ok, Dad, I said,
Now you can let go.
I’m ready, and you’ve taught me
Just what I need to know. 

Walking behind you in the snow

I put my feet where yours had been

You reached back with your hand

To offer me your help

And to keep me on my feet

But I knew then that I could stand.

It’s ok, Dad, I said,

Now you can let go.
I’m ready, and you’ve taught me

Just what I need to know.

Almost to the aisle,
On my wedding day,
You looked at me and said,

I feel like there’s something I should say.

When the preacher asks
Who gives this woman
I know what to do
I’ll say the words
And then let go
But I’ll always be here for you.

It’s ok, Dad, I said,

Now you can let go.
I’m ready and you’ve taught me

Just what I need to know.

It was so hard to see
A man so strong
So fragile in the bed.
I lay down beside him
And put my head on his chest
And, once more, I said:

It’s ok, Dad, I said,

Now you can let go.
I’m ready and you’ve taught me

Just what I need to know.

Bargaining

I heard a story once in which some children were playing ball when the ball accidentally got tossed over the fence into the next yard.  There was a young girl whom the other kids did not allow to play in their ball game because she had problems with her eyesight and with her balance, but she was happy enough just to have the job of going to retrieve the ball when needed.  Eager to play her part in the game when given the opportunity, she tediously climbed the fence and dropped down into the next yard.  Once there, she saw something in the shade underneath a big tree, and she called out “Here, Kitty!” to what she thought was a cat.  After getting no response, the girl picked up the ball, struggled back over the fence, and returned the ball to the other children.  The creature in the shade of the tree was actually a skunk, and, after the girl had climbed back over the fence, he sat there in silence, stunned by the friendly way she had called out to him, which was an extreme contrast to every other interaction he had ever had with a human.  He started thinking about how different his life would have been if he had been born different, if he were a cat or a dog instead of a skunk.  He even started to consider how great it would be if he were a young girl, even one with poor eyesight and coordination, but he couldn’t really go so far as to imagine that – it’s just too far-fetched of a fantasy to fathom.

Bargaining is one of the stages of Grief described in the writings of Elisabeth Kubler-Ross.  The word itself is technically defined as “negotiating the terms and conditions of a transaction;” I see it as an attempt to gain control, and I have learned over the past nine months that at times it can be a valuable tool in figuring out how to cope with changes, disappointment, and sorrow.

The bargaining that my family and I did while Dad was sick, as part of what I later learned was our anticipatory grief process, was in the form of acting like we didn’t mind or really even notice that he couldn’t do many of the things that he did before his diagnosis, including working, driving, exercising, and even basic things like getting ready for the day, talking to people on the phone, and getting himself something to eat or drink.

We also bargained by letting ourselves believe that if we got what we thought was the best treatment possible for him, managed his medications and his care, had him go to rehab, and set up my parents’ house just right, Dad would get better.  We thought that if we gave it our all, we would get something in return, and, like a child who prioritizes in the letter to Santa according to what gift he or she wants the most, what we really wanted to be given was better health, and a better quality of life, for Dad.

A little further down the road, we even bargained by saying that we’d feel so lucky if we could still have him with us and allow him to enjoy life for just a year or two more, although, since I secretly thought that that part was absolutely possible (probable?), I shot for the stars by hoping and believing that Dad had a chance, maybe even a good chance, at being in the very exclusive group of people who “overcame” brain cancer. 

Dad was always a very practical person; he felt like thinking about far-fetched things like winning the lottery was a big waste of time; "Crazy Talk," he called it, when people spent time discussing what he considered to be outrageous ideas.  But even he joined in on our Bargaining Efforts.  For several days after his initial trip to the hospital, he thought he might still be able to compete in the Ironman triathlon that was two weeks away.  He talked about how he didn’t think taking a few days off from his intensive training regiment would affect his ability to finish the race, even though at that point the sensation on the left side of his body was so impaired that he couldn’t stand up or hold a utensil to feed himself.  He was convinced that as soon as he could get out of the hospital he would be ready to go back to work, without missing a beat.  Several doctors and nurses tried to talk to him about the certainty that he would need to take at least 6 weeks off just to recover from brain surgery, even if no follow-up treatment was necessary and even if he had no symptoms or health problems after the surgery.  Each time, he listened to the person’s spiel, but as soon as he or she turned their back or left the room, he winked at us or stage-whispered “That’s what they think!” to be sure we knew he wasn’t going to follow that plan! 

A couple of days after his surgery, when he was told that he had brain cancer, he said he knew he would need to take time to recover and then he planned to restart his training program and get back to work before his sick days ran out.  He asked me to contact the race organizer for the Ironman and see if he could get a deferment, which is athlete-speak for getting permission to enter the race the following year instead of the current year.  In the meantime, he said, he planned to do some smaller triathlons and to continue his training efforts by running, biking, and/or swimming on a daily basis.  He told us that he would just work from his home office for a couple of weeks so as not to get too far behind on that either.

At one point while he was in the hospital, his neurologist said that Dad would not be allowed to drive until he had been seizure-free for at least six months, and he actually told us out of Dad’s earshot that Dad might never be allowed to get behind the wheel again.  “Whatever!” Dad said after the guy left the room.  “If everybody’s going to be doing all of this Crazy Talk about me not driving, I guess I will just get a ride to work and to wherever else I need to go.  Or maybe I will just ride my bike; that would be a good workout!”

After hearing Dad talk about his plan to ride his bike to get to wherever he needed to go once he got out of the hospital, Mom told him that we'd have to see how safe he would be on his bike.  Dad waited until he thought she couldn't hear him and stage-whispered, "I'll just get one of my son-in-laws to put my racing bike on the spinner in the garage and help me on it, and then she'll see that I can ride just fine!"

About that same time, the oncologist informed us that Dad would probably need to get radiation every day for about six weeks as part of his follow-up treatment.  Dad hated that idea because it seemed inefficient to him; he didn’t understand why they couldn’t just “go for it” and give him a higher dose of radiation to get it over with more quickly.  He had a steady stream of negotiation going about that part of his treatment; he felt like it was not “doable” for him to be going to and from the hospital daily for that long or even just to be restricted from leaving town for all that time.  “It’s like I’m grounded,” he sulked when the radiation oncologist told him he couldn’t travel during the six weeks of radiation that was being planned.  "Oh, well, I guess I can do anything for six weeks if it means I'll get better," he offered, as his part of the negotiation.

In the weeks after that, going through rehab, the trip to the Brain Tumor Clinic at Duke, and two rounds of chemo, he shifted gears again and again, eventually giving up on the idea of competing and just hoping to be able to work out for fun.  He told several doctors, nurses, and therapists that he no longer believed exercising and eating right could keep a person healthy: “Look at me;” he said.  “I’m living proof that you’ve got to run or whatever just for the fun of it because it won’t necessarily keep you from getting brain cancer or anything else.” 

While Dad was in rehab and even at the Brain Tumor Clinic, when I looked around the waiting rooms and treatment areas and saw people who weren’t as changed as Dad was, who weren’t as impaired as he was, or who hadn’t been given such a devastating diagnosis or prognosis, I was like the skunk in that story; I would have given almost anything to get just a little something more for Dad, more hope, more function, more time, more fun, more independence, more quality of life. I just wanted for Dad to feel ok and to be happy for even a little while longer.  After awhile, I didn’t even dream of the possibility of his ever being just like he had been anymore; it was too far-fetched and I felt like that would have been asking for far too much given our situation.  It would have been Crazy Talk!

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!