Part 10 – First Visit with the Oncologist

This is a giant sand hill near where my middle sister lives; Dad is pictured here climbing it, which is very symbolic for the uphill battle we faced after his diagnosis.

Continued from Part 9

I got to the rehab facility that night - the second night that Dad was there - and spent the night there with him, which gave me the chance to observe him in all three therapies (OT, PT, and Speech) the next morning and then to go with Dad and Mom on our first visit with the oncologist. 

Dad didn't see the sense in doing a sorting activity in OT.

Dad was very distractible during his therapy sessions; I hoped it was because I was there and he just wanted to chat with me, but I had a sinking feeling that the reason was much more involved.  The OT had Dad match cards and sort little trinkets into piles to work on his dexterity with his left hand, visual perception and scanning, and a host of cognitive skills like following directions, short-term memory, and decision-making.  I knew that Dad wouldn’t see the point (have I mentioned that he hated inefficiency?), but I didn’t see what happened coming.  He worked on the sorting activity for just over one minute and then said he felt nauseous.  I had never in my life seen my dad quit something without giving his all; this is the guy who ran through extreme leg cramps and heat exhaustion to finish races.  In fact, when he was hit by the car and taken to the hospital with a broken leg, he was mad that he couldn’t finish the race!  He told the OT that he needed to go back to his room to lie down, and, as I pushed him in his wheelchair, I was alarmed, frustrated, saddened, and frankly scared that he had bowed out so early in the session; as tough as it sounds for me to think this, I hoped this wasn’t a sign of things to come in the future. There was a thin line, I discovered, between wanting to protect Dad by pampering him and pushing him.  Either way, there was risk and there would be concessions.

After he rested and had lunch, Mom and I loaded Dad up in the car and drove to the oncologist’s office about 15 minutes away.  We met the nurse practitioner, whom we were told would be our first point-of-contact in most cases.  She and the oncologist presented us with treatment options, all of which I noted in the Notebook. All of the options were complicated, and, of course, none of them guaranteed anything.  At that point, I was waiting with baited breath for one that seemed to offer the biggest payoff, looking at the “best case scenario,” as Dad liked to say.

The first option was considered to be the "standard of care" – the protocol that is typically accepted as being the best type of treatment established for that particular type of cancer at that point. For GBM patients like Dad, an oral dose of chemo and radiation are given.  Radiation lasts for 6 weeks, and the chemo pill is given for 5 days per month for at least 6 months.  The oncologist said there were very few side effects or risks to the chemo pill and that the goal would be a cure but that the treatment typically isn’t; if remission is achieved, the cancer almost always returns.

Behind Door #2 was something that was relatively new to the scene of cancer treatment:  Avastin, an angiogenesis inhibitor, which means it interferes with the growth of blood vessels feeding a tumor.  Avastin has been around for almost a decade and is FDA-approved as a treatment of some types of advanced colon, lung, and kidney cancer and for recurring GBM, but not for initially-diagnosed GBM like Dad had at this point.  (Side note:  it was previously approved and used for treatment of some types of breast cancer but has since been taken off the approval list, which remains a very controversial issue among many in the breast cancer treatment arena.)  It has many risks, most of which are related to bleeding, like stomach ulcers and brain bleeds (strokes).   The intent is that it starves the cancer cells so they stop growing or, best case scenario, die off. 

The oncologist called Avastin “remarkable;” I wrote it down in the notebook and started to see a glimmer of Hope.  “The problem,” he said, “is that since it isn’t FDA approved for this phase if this type of cancer yet, insurance doesn’t cover it, and it’s very expensive – it runs about $20,000 per treatment and is given every three weeks, indefinitely.” 

Mom and I were speechless.  Dad managed to get out a “Wow!” which was a good sign to me because I hadn’t been sure that he was paying attention and/or processing all of what was being explained prior to his comment.  “I’m not rich,” he said, before Mom or I could say anything. “I have some money and some investments, but I’m not going to jeopardize my family’s future for something that isn't even a sure thing.” 

“I completely understand,” the doctor said, “but let me tell you about another option related to Avastin.”  He said he was currently accepting GBM patients into a clinical trial and could get Dad in if we so chose.  In this study, half of the patients receive Avastin to add to the standard protocol discussed in Option #1 (oral chemo + radiation); the other half of the patients get the standard protocol treatment but get saline instead of Avastin.  And here’s the Real Rub:  the doctor and his staff and the patients and their families don’t know which group each person is in (that’s called a double-blind study).  That’s rolling the dice like never before. 

I expressed my concern about the gamble.  “There’s one more thing I need to let you know about,” the oncologist said.  “The protocol that involves using Avastin was developed through Duke University, and they have been continuing to run clinical trials with it on initially-diagnosed GBM patients.  I don’t know if they have any new trials starting up or if he would qualify to get into any even if they do, but you could try contacting them to find out and that way he would definitely get the Avastin and its cost would be probably be covered by the money for the trial.” 

“What would you do if it were you?” Dad asked the doctor.

“I’d go to Duke,” he said, “if they could get me the Avastin.”  He handed me a pile of information on Avastin and told me to find out what I could and call him next week to let him know if we were going to North Carolina.  And thus began The Get Dad to Duke Crusade.

Continued here … Part 11 – Unclear

Time – Part 1

While Dad was sick, he was often preoccupied with the concept of time.  He frequently asked what time it was, which was very odd because, pre-tumor, he was one of those people with a hard-wired sense of time, so innate that he could wake up in the middle of the night and know exactly what time it was without looking at a clock.  He also had a flawless sense of direction, which came in very handy on his thousands of long runs and bike rides.

His illness took both of those away from him from the very first day, though.  The directional awareness wasn’t as much of a problem; he was pretty much confined to the hospital or to the house while he was sick, so getting lost wasn’t really a risk.  He was aware of his confusion about the concept of time, though, and it disturbed and frustrated him greatly on a daily basis during that time.

From the day that Dad was diagnosed and continuing to the present day, I've felt like there is a ticking time bomb following me around.  I constantly feel like somehow, somewhere, time is running out, and I'm hyper-focused on the fact that there just isn’t enough time.  Obviously, that started when we were told that Dad’s time was limited.  The sand was flowing way too quickly through the hourglass, and then Dad started revising his Bucket List, which further drove the point home.  Of course I know that no one is guaranteed anything in life, certainly (and painfully obviously) not time, even when a person has done all the things that would seem to be a shoe-in for ensuring longevity.  But it's still an anxiety-provoking issue, and it certainly was for Dad and for my family following the diagnosis.

When I think about the concept of time and whether or not someone can ever have enough, it reminds me of the way that when my children were little they always said “too much” whenever they were asked how much of something they wanted.  After hearing them reference a quantity in that way a few times, I realized that it was because when they got a drink, a snack, books, or toys for themselves, I would usually say “Don’t get too much!”  (i.e. Don't spill the food/drink or don't get too many things out because that'll be more to clean up later.)  They used the term "too much" to mean “more" at that age, and that’s what we wanted in terms of time with Dad. 

As I began writing this, I was thinking, as I have so often, about how I don’t think there was enough time for Dad, and then a thought popped into my head:  maybe it was those of us left behind who didn’t have enough time with him.   Maybe his benchmarks were met, if his interpretation of enough wasn’t related to time but to quality and to things like loving and being loved, feeling like one has made an impact, and being able to look back and say, “What a great life!” 

In this video clip from the movie The Bucket List, Morgan Freeman’s character Carter tells Jack Nicholson’s character Edward that the Ancient Egyptians believed that, when a soul got to the entrance of heaven, two questions were asked, the answers to which determined whether the soul was admitted or not.  Without a doubt, Dad could’ve answered YES to both, and in that way he did have enough time - enough to find joy for himself and to bring it to others, both many times over.

What’s In A Name?

Mom and Dad "horsing around" on a camping trip

One of Dad’s quirks that was so endearing to anyone who spent much time around him was his “creativeness” when it came to identifying certain things by name.  He often got what he considered to be the details mixed up; this wasn’t a memory problem – it just wasn’t a priority for him to remember the exact name or pronunciation of certain things.  It was usually pretty easy to figure out what he was talking about if it was mentioned in context; it was like a guessing game other times, but either way it was always entertaining.

For example, Dad asked his granddaughters, “Have you heard of this Michael Boubble [he said it like bobble] guy?  What’s his name?  Michael Bluhbluh?”  They deciphered from the conversation, which was about music, that he meant Michael Buble.  They told him that most of Michael Buble’s fans were middle-aged women, but Dad said he didn’t care, he really liked the guy's music too. 

When the movie “Pirates of the Caribbean” was released, Dad said he wanted to take his grandchildren to see it, but he kept referring to it (even after they’d seen it) as “The Pilots of the Mediterranean.”  They knew what he meant, though; they were used to Gramps’s reinterpretation of things like that and thought it was hilarious.

Before Dad got sick, he read in the news that President Obama had eaten at Five Guys, a fast-food restaurant, in Washington D.C.  Dad thought it was great when his city got a Five Guys; it is actually located not far from the hospital where Dad was taken when he got sick.  As part of our campaign to get Dad to eat more when he was sick, we offered to get him food to-go from any restaurant he wanted, and he said, “I guess I could eat an Obama burger.”  Those of us who hadn’t read the article didn’t know what he was talking about, but luckily those who had caught on and he got the burger he wanted. 

It’s funny what specific things we miss about those who have gone on ahead, like Dad’s renaming which was such a great part of him.   He never had the chance to hear this duet sung by one of his old favorites and one of his new; he probably wouldn’t have remembered the name of it, but he definitely would have enjoyed the music.

This one’s for you, Dad!

What Mattered Most

 

Today would have been my dad’s 68^th birthday.  On this day last year, he’d been in the ICU for four days and was about to have surgery to biopsy and remove as much as possible of the brain tumor.   It was a tense, rough week for him and for those of us who loved him.    

When I think back to the “me” that I was in the days before Dad’s diagnosis or even during the time when he was sick, I’ve debated about whether I should be envious of that person or, now that I know what’s coming, if I should feel sorry for her.  Dad would say that kind of thinking is ridiculous; he was never a fan of thinking about or worrying about things that he felt didn’t matter or didn’t affect the outcome.  Just for the record, though, I’m leaning towards being jealous of that person (me at this time last year) because she still has time to spend with him.   She can still talk to him and hold his hand, and that’s something that matters a lot, to be sure.  

It wasn’t a good birthday for Dad.  He would probably say it was, though – he would say, “It could’ve been worse!”  Unlike a lot of adults, Dad looked forward to ticking off another birthday each year and didn’t mind being the age that he was.  He typically gave us his Wish List for “birthday ideas” well before his birthday, even though he was always the easiest person around to buy for, probably because he had such distinct hobbies that could always be supported with clothes and/or equipment and because he was always grateful for whatever he was given.

We gave him a couple of his gifts in the hospital – the ones that weren’t related to running, biking, or swimming – but he was too distracted and anxious for it to really matter; there wasn’t much celebrating going on for any of us.  We didn't have even a trace of the thought that that would be his last birthday or even that it would be the last holiday for which we would be able to buy him a “normal” present.  Even looking at him in the bed in the Neuro-ICU that day, we had no idea at all what was coming down the pipe.  We did know, though, what mattered most; we didn’t need an ambulance ride or surgery or cancer to remind us.  

Happy birthday, Dad.  Damn, I miss you.  I know you'd want us to celebrate your birthday for you, since you're not here to do it yourself.  It's just so tough, getting through this day that marks an age you didn't have a chance to reach.  I'm trying, though, and I want to celebrate your life more than I am mourning my loss, to smile when I remember you instead of crying.  But, as we all know now, just wanting to and trying aren't always enough.

Still

I sometimes still think I hear his voice

In the words I hear myself say.

I think I see him in the crowd,

But I can’t get to him before he fades away.

I’m still not convinced this is all real;

I’m hanging on to the chance that it’s not.

It’s not the reality I want,

But painfully it’s the only one I’ve got.

Do you know how it is when your world,

Your reality, and everything go?

The colors, they fade,

And time moves too fast or too slow.

When you realize there’s only so little you can sleep,

You wish it’d been a nightmare and hope for a dream

And you see that the medicine cabinet’s only so deep

But this is one thing that is just exactly as it seems.

The hot-lava tears that run down your face

And the sad songs that seem to repeat

When you’re lying in your bed with the curtains drawn

Still feeling so unbelievably beat

I still think it’s him

When I go to answer the phone.

When I drive in the car

And I don’t feel like I’m alone.

I wake up in the morning

Lay my head down at night

And think there’ll never be a point

When things go back to feeling just right.

Spaghetti

Just for kicks, I looked up the word “spaghetti” in the dictionary today.  It’s defined by Webster’s as “pasta made in long, slender, solid strings; an Italian dish consisting largely of this, typically with a sauce.”  Simple enough, but, to me, spaghetti has a much richer meaning.

As I’ve mentioned, my dad didn’t play favorites.  Like a lot of the things he didn’t participate in, he just didn’t see the point of it.  One night when he was in the hospital, I asked him who his favorite nurse on the floor was.  I was just making conversation, trying to keep his mind off all the things that were not going our way.  He replied, in total seriousness, “I don’t have favorites!  It would just make someone feel bad if I did.”  Point taken. 

But there were a few things that were his favorites among others: 

Favorite sport:  running
Favorite number:  5
Favorite color:  blue
Favorite college football team:  Auburn
Favorite meal:  spaghetti and apple pie
 

Running and #5 - what a great day!

Dad loved spaghetti.  He didn’t care if it had thick noodles or thin and usually didn’t even notice if it had meat in the sauce or not.  He didn’t like cheese on it (he always said cheese makes people fat.), and of course he didn’t want any kind of fancy garnishes.  He’d eat a basic salad (with fat-free dressing), if one was offered, but he didn’t mind if it wasn’t.  He really just wanted the spaghetti.  A few times I made spaghetti sauce from scratch for him – but he didn’t notice the difference.  Every so often we’d serve meatballs with the spaghetti – and he’d eat one or two to be polite, but what he really savored was the noodles with the sauce.  He didn’t care if it was served hot or cold.  He didn’t like fancy sauces – no alfredo for him!  Just the jarred sauce over regular spaghetti noodles and he was completely thrilled with the meal.

Every year, on Father’s Day and on his birthday on Oct. 26, Dad wanted to eat spaghetti.  In fact, we had it about once a week when I was growing up, but we never got tired of it.  On special occasions, we would also have apple pie, his favorite dessert.  He would always say he just wanted a little piece of pie and then, an hour or so after he’d eaten the small sliver, he would come back for more, usually with just his fork.  We could tell he’d been back for more by the shark-bite edges of the pie left by his using his fork to dig into it when no one was looking.  Like the spaghetti, he didn’t care about any variations on the pie and didn’t even notice when it was homemade.  Hot or cold, store-bought or not, he loved it. 

Maybe Dad loved it because he grew up in a family that was on a very limited budget.  Maybe it was just something that tasted good to him.  Maybe it was related to the fact that spaghetti is easy to cook (especially the way he liked it) and he usually didn’t like people to go to any trouble for his sake.  Maybe it was just his perspective of what was good and of what he felt lucky to have.  In any case, my family (near and far) is going to have spaghetti – and, if possible, salad and apple pie – for supper on Oct. 26 every year in Dad’s honor.  You’re invited to join in, too … Dad would have loved it!

What I Miss The Most

I miss my dad, a lot, all the time.  Lately, I’ve been thinking about what it is about him that I miss the most.  As anyone who knows me know, I love lists.   So here’s my list so far for What I Miss The Most …

 *I miss seeing the wrinkles that formed around the outside corners of his eyes when he laughed or smiled, both of which he did A LOT.  So often people don’t want to be photographed if they are not at whatever they consider to be their best – their hair isn’t just right, they need to lose a few pounds, the weather is too hot/cold/windy, they don’t have the “perfect” outfit on, etc.  I’m so grateful that Dad didn’t worry about any of that; having so many photos of him, especially when not everything was “picture perfect,” has been and continues to be so comforting to me.

*I miss his technologically-inept, stream-of-thought text and email messages – which he typically signed with his initials in lower-case or two slash marks or both.  He didn’t worry if everything was exactly right before he texted or sent an email.  He just wanted to convey a message, and he did that so well through so much more than just with words.  His emotions (usually his enthusiasm and humor) were evident in those messages, and they were contagious.  The emails and text were full of life, just like he was.
 

*I miss his excitement for whatever was coming up – he loved to make plans, always wanted to “have something on the calendar” to look forward to.  I am finding that to be good advice for moving forward in my grief, too.

  

*I miss watching his interaction with his grandchildren.  They called him Gramps, and their relationship with him was different from every other grandparent-grandchild connection I’ve ever seen.  He was not only one of their biggest fans but also a one-man Entertainment Committee for them (and for us).  He loved to plan things that he thought would amuse and delight them.  For example, when he knew one or more of his grandchildren were coming to visit, he loved to hide from them and then jump out and “scare” them (it wasn’t really that scary because he did it every single time!).  He loved to tell them ghost stories, complete with a flashlight and scary noises for emphasis.  When my parents first moved into a new house after Mom retired, Dad schemed for weeks about how he could best use the little historic graveyard right in the middle of their new neighborhood as a prop when the grandkids came to visit.  When the day finally arrived, he sneaked around the back of the neighborhood while my mom took the kids on a walk so that he could hide in the little graveyard.  It was a grand plan, except that (a) he wasn’t really that sneaky – the grandkids knew from his behavior and the look on his face that he was planning something before they even left on their walk, and (b) some of the neighbors (who didn’t know him yet) saw him hiding under the tarp waiting to jump out at the kids and were ready to intervene (they told us later that they had been considering calling the police), thinking it was some creepy guy waiting to attack an innocent woman and her grandchildren!  

Dad laughing, after a shaving cream attack by the grandkids

*I miss hearing his voice – talking and singing and laughing.  We have some audio recordings of his voice, but of course it’s not the same.

 

*I miss his goofiness, his sense of humor, and his willingness to take a joke and to make fun of himself.  When my younger daughter was learning to ride a bicycle without training wheels, we had a set of Barbie biking gloves, helmet, and knee pads (in case of a fall).  Dad saw them later in our garage and put them on himself, which was funny - but not nearly as funny as it was when he discovered the knee pads were so small that he couldn’t get them off without assistance.  (We "let" him wear them for awhile just for effect before we helped him get them off.)

Dad, hamming it up with Mom's purse

*I miss the inside jokes and the memories that only the two of us shared.  There were so many, and I'm so afraid that I will forget some of them.  Some of them are important; others are not so much but still help to quell the pain in my heart when I think about them, like when I was a teenager and I bragged to him that I was learning sign language.  He said, "I already know sign language!" and then demonstrated his skill level by flipping me the bird with both hands (all of this while he was driving down the road).  


*I miss his perspective, his positive attitude, and his way of dealing with different types of people and situations.   He never missed a chance to say hello or to speak kindly to another person.  He always looked on the bright side, and he felt so lucky every single day that the rest of us, by association, did too.

I am sure many more things will go on this list in the days, months, and years ahead.  Simply put, where my dad used to be, there is a hole in the world, one that I keep finding myself either having to walk around or falling into.