The Smell of Colors

I once worked with a child who said that he could smell colors; I was intrigued by his claim and asked him to tell me more about it – how he’d first noticed it (“I just did,” he said) and what each color smelled like to him (interestingly, I thought, white smelled like flowers, whereas I thought it would smell like the “fresh cotton” scent of an air freshener).  Some of the other people who worked with this child seemed to think his behavior was bizarre, but I thought it was fascinating.

Obviously I can’t tell other people how a certain color smells, but what I can do is to describe what certain emotions sound like. 

On the first night after we’d gotten to Durham when we took my dad to the Brain Tumor Clinic at Duke, my sister Jennifer and I lied down to try to sleep on the pull-out couch in the little room that adjoined with the bedroom where my parents were. Dad, who was both exhausted and wound up from the very long, tedious drive there that day and somewhat disoriented about what was going to happen the following day, had finally gotten to sleep, and Jennifer and I had only then realized that all of the pillows and blankets were in the closet of the bedroom.  We didn’t dare go in there for fear of waking Dad up.  We lay there on the thin, spring-violated mattress with a threadbare sheet over us, without pillows for our heads, and suddenly we both started laughing.  Punch-drunk is what I guess it’s called: laughing when essentially nothing is funny - out of fatigue so thick we could hardly think – and stress and terror and so many more things that felt so much more powerful than we were at that moment in time.  We had to keep shushing each other until we finally giggled ourselves to sleep that night, with the laughter somehow helping us to steel ourselves for the next day, which was both Jennifer’s birthday and the first day Dad got chemo.

The metaphor that comes to mind most often when I think about my emotional state during the time Dad was sick is a glass that’s completely full: whenever anything additional was added to what was already in there, the overflow was out of my control, and I was completely incapable of handling it.  One of the many things that happened during those ten weeks that threatened to put me over the edge was the car trouble that mysteriously started happening just after Dad’s diagnosis.  Just days after his surgery, I remember hearing a faint buzzing noise coming from under the car hood after I'd parked and taken the key out of the ignition.  My husband checked it out and said that it seemed like the battery was still running, despite the fact that the car wasn’t.  He took it to the repair shop, but they couldn’t get the problem to reoccur while it was there.  It didn’t happen again for about a week; the next time I heard the buzzing noise, I was in the parking lot at the rehab hospital, about to go inside and take an overnight shift with Dad. 

I was torn; I needed the car because I had to drive back home to go to work the next day, but I needed to be with Dad.  In a move that seems totally uncharacteristic for me, I threw caution not just to the wind but completely into outer space and left the car – and the buzzing – in the parking lot and went into the hospital.  Since my dad’s diagnosis, my priorities had never been clearer.

The next day when I went outside to the parking lot after Mom had come back to be with Dad, I unlocked my car door and tried to start the engine.  Nothing.  The battery was obviously dead.  Luckily for me, my aunt, who was at the hospital too, offered to help; we called AAA and they sent a repair guy to check it out.  He replaced the battery, and, when the same incessant buzzing sound started up again as soon as he connected the new one, he told me to get the problem checked out to be sure it wouldn’t happen again.  I took the car straight to the dealership near the hospital, but they couldn’t find a problem; they said they’d disconnected and then reconnected the battery and the buzzing noise had stopped. 

Looking back and remembering the amount of stress I was under at the time, I’m a little surprised that I didn’t just tell the people at the dealership to keep the old car and bring out a new one for me; having to deal with car trouble on top of everything else was definitely an overflow of the stress with which I was equipped to cope.  Instead, though, I drove the three hours home and told my husband what had happened (again), and he showed me how to disconnect the battery under my hood and gave me a yellow-handled wrench to keep in the side pocket of my car door, just in case. 

Just in case was a language in which I was fluent by that time.  I’ve always felt the need to have plans and back-up plans, and, since Dad had gotten sick and had begun to need around-the-clock care, I knew that careful strategies and consideration of all the variables was essential to my entire family.  Having to tote a yellow-handled wrench around did not at all – pun intended – put a wrench in the plans we had laid.

A couple of days later I drove back to where my parents lived and parked my car in front of their house.  I heard the buzzing again after I’d turned off the engine, and I inexpertly used the wrench to disconnect the battery. I became much smoother at the process over the next couple of weeks, even performing the procedure later in snow and in the dark.  On the day when I was driving home from my parents’ house on icy roads and had to turn back due to the route being impassable, I pulled up in my parents’ driveway, stepped out of the car, and heard the buzzing again.  In the snow and ice, I hurriedly used the wrench to disconnect the battery and then closed the hood of the car and went inside, wet from the snow and shaken from the precariousness of the road conditions.  Dad, who was sitting in his red leather recliner chair in the den, looked up from reading the newspaper when I walked in and noticed the wrench that I’d forgotten to put back in the car in my hand.  When he asked and then I explained why I’d needed the tool, he laughed and said, “Well, if the whole OT thing doesn’t work out for you, I guess you could always be a mechanic.”

When Dad was in the hospital the last time and my family was having to deal with getting to and from the hospital on icy roads at all hours of the day and night, I got so adept at disconnecting and reconnecting the battery that I could do it in the hospital garage in under ten seconds each time.  I ignored the stares of the people around me in the garage and declined the help of the security guard who saw me with the yellow-handled wrench and my car hood propped open.  The battery hookup/unhook became part of my commute routine, just like defrosting the windows and driving through Sonic on the way to the hospital to get Dad a Diet Coke.

I still sometimes think about the boy who said he could identify colors by their smell, and it makes me think that maybe part of the reason I made it through the difficulty of the time when my dad was sick and since then is that I somehow recognized that, because my family is lucky, we had the sound of laughter to remind us of the love and hope and devotion we shared even through the most challenging times.

What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

No Answers - Part 1: The Oncologist

There are some thoughts - the what-if's, why's and why not's,  the should have/could have/would have type of thoughts - that are probably common amongst people who are left behind after a person with a terminal illness dies.  

One thing in that realm that bothers me a lot is the way things were handled by the medical team involved with my dad's case - and that branches off into lots of other questions linked to the health care system in general.  I know there are not going to be answers to these questions, but I feel like I have to get them off my chest anyway.  So I'm going to start with the unresolved issues that relate to the oncologist...

As I've stated, I really liked the oncologist on Dad's case at first; like a lot of other people, I sometimes look for "signs" along the way to reassure myself that I am on the right track when I have to make a tough decision.  I thought we were doing the right thing by choosing that doctor to head up Dad's case, in part because I thought maybe it was a "sign" that he had gone to medical school where I live but he had done his undergrad work at the college that was my daughter's first pick.  (How freaking ridiculous is that?  That's like putting your life in someone's hands because they have the same favorite color as you!)  I got a "good vibe" from the guy the first time I met him; I felt like he was down-to-earth, unlike the asshole neurosurgeon who had been assigned to Dad's case, and I felt like he understood not just that we viewed my dad's case as a unique one but also why we did -  and I thought that meant that he would see it in the same way we did (translation: I thought he would do whatever it took to help my dad, just as I was ready to do).  

At our first appointment with the oncologist, I asked him directly if he would bring up the subject of hospice with us when it was time.  Like pretty much everyone who walks through the door of an oncologist's office for the first time, I had only limited knowledge about cancer in general, and obviously I didn't know much about brain cancer or the treatment for that specifically.  It's terrifying to be in a position to have to put such blind faith in someone you don't know at all, but you have to trust someone - and so that's what we did.  

I will never forget the scene in the awful little room off to the side of the hospital waiting room where, hours after Dad's surgery had been completed, the neurosurgeon imparted the most devastating news possible to my family and me about Dad's diagnosis and his prognosis.  As soon as he finished talking, I bombarded him with questions that I thought would influence what he had just said; as things were spinning completely out of control, I was desperate for control of something.  When I got to the end of my list of questions, I pledged out loud that we would fight the cancer tooth and nail, because that's what I wanted and that's what I thought dad did too.

Fourteen years ago, my sister gave birth to her first child, a daughter who is very healthy today but who was born early with some medical problems that necessitated an extended stay in the Neonatal ICU for the first few weeks of her life.  Various family members traveled to the city where she was hospitalized during those weeks, taking turns being there with her and with her parents.  One family member per night was allowed to stay in a family room near the NICU at the hospital.  One night, my dad volunteered to stay so my sister and her husband could get some sleep.  As I heard the story told later, at some point late that night my niece's condition became very critical, and a nurse dashed across the hall to ask my dad if heroic efforts should be used.  As my dad later told it, without hesitation he said, "We choose to fight." And with that, the medical team pulled out all the stops, saving my niece's life.  

Fast-forward a dozen years later, and it was my dad who was critically ill, and it was us who were being asked if heroic measures should be taken.  We all thought back to the story that had been told many times about Dad's proclamation on my niece's behalf when she was so sick, and we knew that Dad wanted to fight.  Never for a minute in the days after he was diagnosed did I consider that he might want to forego treatment, even knowing that the treatment would not be easy.  

And so at our first appointment with the oncologist, after he vowed that he would give us his honest assessment of when he thought we should move towards comfort care instead of moving along a restorative path, we discussed an aggressive course of action to treat GBM.  When we left there that day, I felt good about what we had talked about; I felt like we had a good set of facts and a plan of attack.

Looking back, though, I'm not sure the oncologist presented us with all the facts or all the options; I think he guided us towards the treatment that he was most interested in and/or most knowledgeable about when it came to brain cancer.  He said, when I asked him, that he was currently only treating one other patient with that same kind of cancer.  I didn't ask him how old that patient was, how much of the tumor the surgeon were able to remove, or anything else except what the treatment was that seemed to be working for the other guy, which of course turned out to be Avastin.  As soon as the oncologist said that, I wanted the same for Dad, the same medication, the same outcome.  I desperately wanted Dad to be the one that the oncologist could hold up as an example of a success story in the future.

This is just how new I was to that world, though: when the doctor explained what the "standard of treatment" was for Dad's type of cancer, what I really heard was "standard treatment, " and I got hung up on the word "standard."  In my mind, that meant "average," and, as the doctor talked and talked, I just kept thinking, "HELL NO, we don't want the 'standard' treatment - we want the EXCEPTIONAL one!"  

It wasn't until a few weeks later when we were at the Brain Tumor Clinic at Duke that I realized that the term was actually "standard of treatment" and that it referred to the treatment that was generally accepted and used for a specific diagnosis.  

Since then, I've become familiar with stories about people who have been diagnosed with GBM and who have fared well going the route of the standard of treatment, which typically has very few side effects.  I've heard stories about other people with the same diagnosis who have chosen different types of treatments, too.  But I didn't know any of that back then.

The only choices we were given that day in the oncologist's office were the standard of treatment (an oral chemo called Temodar + radiation) or the cutting-edge version (Temodar + radiation AND Avastin, which works by cutting off the blood supply to the tumor site) that was going on as part of a clinical trial.  That was it.  As I've learned since then, there are other treatment options available for GBM, and I think those alternatives at least deserved a conversation.  Unlike some other cancers that are diagnosed much more often, only modest advancements in the treatment of GBM have been made over the last 30 years, and so far a successful "cocktail" of chemo or other treatment regiments that positively affect survival rates have not been identified.  As a result, there isn't a cookie-cutter approach to treating the disease, which means there are possible variances in treatment strategies.

Maybe the oncologist thought we had time to try alternate treatments if necessary in the future, if the first protocol wasn't successful or if it was and then a relapse occurred (which almost always is the case with GBM).  Maybe he felt that things like vaccines and other immuno-therapeutic treatments wouldn't be as effective for Dad for some reason.  I am just left to wonder why other possible treatment options weren't discussed at all, one of many questions for which I know there is no answer.

Two Years Ago

Today I am remembering my family's Journey of Hope exactly two years ago, when we took my dad to The Preston Robert Tisch Brain Tumor Center at Duke University Medical Center in search of a treatment - or maybe even a cure - for brain cancer.

After Dad had gotten his first round of chemo and the "Magic Bullet" drug Avastin there, we spent the night in Durham, as we'd been told by the doctors that we had to do after the treatment in case Dad had any side effects after the first round that required medical attention.

We hadn't planned on staying that night originally; we had been told that we could get to Durham on the Monday before Thanksgiving, go to the first day of appointments at Duke on Tuesday, meet with the advisory team of neuro-oncologists on Wednesday morning, and then hit the road to travel the 500 miles back to my parents' house, in time to make it home that night so we could be there for Thanksgiving.  Our Back-up Plan was to drive part of the way back on Wednesday, spending the night at a hotel along the way and then getting up early on Thanksgiving Day to drive the rest of the way home.

But we also hadn't expected for the team to recommend that Dad start treatment there at Duke, right then.  And, since part of the deal for his doing that was that we stay in the area overnight, we agreed to stick around.  While I sat with Dad in the clinic as the medicine dripped into his veins, my mom and my sister Jennifer met with a hospital social worker to go over insurance coverage issues and other things; the staff at the Brain Tumor Center seemed much more well versed on several important matters like that than did the people with whom we had been dealing at the local oncologist's office.  My brother-in-law, Peter, who had taken a red-eye flight from California the night before to be with us in Durham, hastily searched the city for a hotel that had a suite-style room or two adjoining rooms - one of which we needed to be wheelchair accessible - available for that night.  Evidently, the night before Thanksgiving is a big night for hotels in that area, though, and the only hotel with enough available space for all of us to be in close proximity was not set up for handicapped access.  It was what it was, though, and so after a flurry of text messages back and forth between all of us, Peter booked the rooms and drove back to the hospital to pick up Dad and me, as Mom and Jennifer will still in a meeting there.

Once we got to the hotel, we got Dad situated in the wheelchair, and then I pushed him and Peter carried the luggage up to the room.  Dad wanted to sit in an armchair by the window in our room and watch TV ("It's way too early for bed," he said, as much to himself as to anyone.).  Peter went to the vending machine and got Dad a big bag of peanut M&M's and a Diet Coke, which he poured over ice into a styrofoam cup.  He put the goods on the table next to Dad, and then he and I took a look at the set up in the hotel room bathroom; I was very apprehensive about the fact that there were no grab bars (and essentially nothing else for Dad to hold onto) by the toilet, and, to make matters worse, the toilet seat was low, which would make it even harder (and more dangerous) for Dad to get up and down.  Peter and I decided that he would go to a drug store to try to find grab bars that could be installed temporarily; that seemed to be our only option at the time.

In the midst of our conference by the bathroom door, we heard a noise from the bedroom area where Dad was.  We hurried in and saw Dad nonchalantly sitting in the chair watching TV, with most of his drink and the majority of the M&M's spilled all over the floor.  "What happened?" I asked him.  "I didn't try to get up," he responded, which made me think that either he did and didn't want to admit that he couldn't do it, or he had no idea that I was referring to the fact that there was stuff spilled all over the floor next to his chair.  Peter grabbed towels from the bathroom, and, as he and I cleaned up the mess, I noticed that the table where the drink and candy had been was on Dad's left side, the side that was his dominant but in which he had impairment in sensation and strength because of the tumor.  It was evident that he had either accidentally knocked over the stuff on the table by just moving his arm, or he had reached for something on the table and knocked it over, or he had tried to get up out of the chair by pressing down on the only thing around him - the table- and then the table had tipped slightly, causing him to have to sit back down and the stuff on it to spill.   In any case, he seemed to have forgotten that anything had happened.  When he saw us cleaning up the spill, though, he started asking questions: "Did I do that?" and "Where is Vicki [my mom]?" and "When are we going home?" - and - the one that I thought was the most alarming - "Am I going to get chemo today?"  Shit, I thought.  I had been so hopeful over the last few hours as we heard from the Duke team about the benefits of their treatment protocol and then as I sat beside Dad in the Chemo Room watching him get the Magic Bullet treatment.  Now I was just scared, because with him not noticing or not remembering how he'd spilled and then with those questions, it seemed like he was getting worse.

But, as we had been doing during that time, Peter and I exchanged a look of concern, but we held it together and moved on to the next task at hand: while I sat with Dad in the hotel room, Peter drove to pick up my mom and Jennifer at the clinic.  He dropped off my mom back at the hotel and then he and Jennifer went on a quest for the safety rails, which, as seemed to be par for the course for us, turned out to be not nearly as easy as we'd thought it would be.  Traffic was nightmarish, and none of the drug stores in the area had what we needed in stock.  My sister tried to look up medical supply companies on her cell phone as Peter fought the traffic, but cell phone signal was sketchy.  Finally, they found a little hospital supply store that had the rails; they paid for their purchase and made their way back to the hotel.

Once back in the room, Peter and I looked at the directions for installing the grab bars and realized we needed a screwdriver.  He called the front desk and got connected to the hotel maintenance guy, who agreed to let us borrow one.  Peter handily removed the toilet seat, fastened the frame that was connected to the grab bar to the toilet, and replaced the seat.  Good to go.

The sun was just going down by that time, and Dad was already fighting sleep.  Like every night, he talked us into helping him into the bed and then talked about how he wasn't hungry but would try to eat something for supper and how he knew it would make for an odd sleep schedule to go to sleep that early but he was so tired he didn't think he could help it.

We let him sit up in bed watching TV as we came up with a game plan for what to do for supper. Peter volunteered to sit with him while Mom, Jennifer, and I went downstairs to the hotel restaurant, and we said we would bring food back to the room for the two of them.

I remember sitting in the restaurant thinking about just how surreal the whole situation was, from the fact that my dad had brain cancer, to the way his treatment had been started much more quickly than we'd anticipated, to how we'd been directed to stay in the area for an extra night, which meant we wouldn't make it back in time to join in on the Thanksgiving feast with the rest of my large extended family who had been expecting to celebrate with us after our trip.  As we ate, we talked about what a whirlwind the trip had been, how grateful we were that the Duke team seemed to be in our corner, and how hopeful we were that the treatment would help.

After we'd gotten back to the room and Peter and Dad had eaten, Dad announced that he was going to sleep, which was a cue for Peter, Jennifer, and me to retreat to the hotel room next door.  We positioned the door between the adjoining rooms so that it was almost closed, so we could hear if we were needed in my parents' room but so that we could whisper in our room and not disturb my parents.

As usual, Dad had to get up a few times during the night to go to the bathroom, and we were glad for the grab bars each time.  Because he had been started on the chemo pill just after he had the IV treatment that day, we had been instructed to be sure that the lid of the toilet was closed each time before he flushed and to make sure he thoroughly washed his hands after using the bathroom to protect him against toxic chemicals (Doesn't it seem weird that they were having him ingest the chemicals but he had to take extra precaution to avoid being exposed to them externally?).  We tried prompting him through the bathroom door to remind him, but, because he didn't always listen to us before he did something like flush or try to stand up by himself, eventually my mom just started going in there with him to be sure that he was following the safety procedures.

The next morning, on Thanksgiving Day, everyone but Dad woke up early and packed up our gear; we were eager to get started on the drive home.  We had a hard time getting Dad up and getting him ready; he wanted to have his face shaved, and it took major negotiating to skip it so we could just load up and go.  It was quite the antithesis to his usual tendency when it came to starting out on a road trip; every other time, he was the one getting up early and urging the rest of us to hurry.

Many restaurants and even some gas stations were closed along the way on the long drive home, and, by the time we finally made it back to my parents' house that night, we were hungry and exhausted.  We ate leftover Thanksgiving food that had been packaged up and put in the refrigerator for us after the big family meal that we'd missed.  Dad ate a little turkey and dressing and then went to bed; as usual, though, even with as tired as he said he was at the beginning of the night, he had a hard time sleeping and battled a headache all night, finally falling into a medicated sleep just before the sun came up.

The ringing of my parents' telephone woke us up early the next morning; it was a nurse from the nursing home where my grandmother was calling to tell us that Grandmom had taken a turn for the worse.  My siblings and I hurriedly got dressed and drove to the nursing home to be with Grandmom, and the challenges continued all day long.  A cold front had come through overnight, and it was very cold and windy outside, which added to our problems, especially during the family photo shoot.  

When I think back to that day, one of the most difficult days of my life, I remember the brutal cold, the confusion, the fatigue, and the extreme concern about Grandmom, but what I remember most is how hard Dad worked to take part in what was going on around him - and the feeling of love between all of us.  I remember noticing how difficult it was for Dad to tolerate the cold weather as he was helped out of the car, as he sat in the wheelchair for pictures to be taken, and as he was helped back into the car so he could get back home.  Like a lot of things going on then, the photo shoot seemed almost dreamlike: for as much as I was in denial about the prognosis of the brain cancer, I guess some of the reality had sunken in because not long after the news of his diagnosis had been given to us I scheduled a family photo shoot for the day after Thanksgiving, knowing (desperately hoping?) that the whole family would be together then so that we could have our picture taken, all together.  

We made it through the photo shoot and through the next couple of days, trying to keep all of our spirits up as we watched over Dad and Grandmom.  

I don't remember a lot from the time my dad was sick, including the details of what else we did over that weekend, but I do remember that I felt a sense of unease (even more than usual) when I left my parents' house that Sunday.  I really wanted to be present when the "magic" we had been promised happened; I envisioned Dad suddenly standing up from the bed or his recliner, steady on his feet and with clarity in his eyes and a smile on his face.  But more than I wanted to be there to witness first-hand the miracle, I just wanted one to happen.  I wanted to see the fulfillment of the cause-and-effect; I wanted the promise of the hope that we had to be realized.  It had been a whirlwind past few weeks, especially the one leading up to Thanksgiving, and I was exhausted both mentally and physically, but I was so very thankful for the love and the time together that we had.

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll