A Ticket Straight to Hell

In March of 2012, just over a year after my dad had died after being treated with Avastin, it was reported in the news that the company that sells the drug in the U.S. was being investigated for possible distribution of counterfeit product.

I knew it didn't matter for my family, really, for a couple of reasons, not the least of which was that Dad was gone and nothing could ever bring him back.  The other reason - and the one thing that kept me from going completely ape-shit about the possibility of my dad having been given a fake drug as part of the treatment regiment he received after his brain cancer diagnosis - because the MRI he had when he was admitted the second time to the hospital had shown good early results of the treatment (decreased vascularization to the tumor site) which could not have been the case had he gotten the fake stuff.  

A combination of what I guess was curiosity and grief and empathy for anyone else who might have gotten a bad dose of the drug still got to me after I read the reports; all I could think about what what a TICKET STRAIGHT TO HELL that kind of deception must be, if indeed the claims were true.

After a couple of days, I decided to call the Avastin manufacturer Genetech, and in doing so I ended up being connected to a very nice representative who said that - so far - the fake "lots of product" had only turned up in California, Texas, and Illinois and that all of those "were acquired through unapproved means."  When I asked what that meant, he said that the patients who'd gotten the counterfeit Avastin had either acquired it through an unapproved source like through mail-order or for unauthorized treatments, possibly off-label uses, again none of which apply to Dad's case.  

When I told him why I was interested in finding out about the validity of the claims, the rep asked about Dad's case, which, as you can tell, I find therapeutic to discuss - and he took an obvious interest in the medical and in the personal details of Dad's story.  He sprinkled in a few kind comments like "Your dad sounds like an amazing man" [I caught the present-tense verb in that statement and really appreciated it] and "I bet that was really hard" to the conversation, but mostly over the course of our half-hour conversation he just asked open-ended questions and listened as I talked.  When I told him that I was concerned that Dad's case would not be included in the statistics provided to his company by Duke University (where Dad was put on the protocol from the clinical trial) on the outcome of patients with brain cancer who were treated with Avastin (more on that later ... ), the rep said that he was taking notes as we talked about Dad's case and that he would cross-reference them to the statistics provided by Duke for comparison.

The rep was nice, and, while of course that didn't solve any of my problems or bring my dad back, it helped just having him listen and seem to take an interest in what had happened.  As we ended the conversation and I hung up the phone, I thought about how big pharma companies and even just phone reps in general usually get a bad rep - and oftentimes they deserve it, but - just like I saw my dad do countless times - this particular rep had taken the time to show kindness to a stranger for no particular reason at all, and I really appreciated the gesture.

No Answers - Part 4: In The End

Continued from No Answers - Part 3: Doctors and Death

Another thing that I find disturbing from during the time that my dad was sick is that we never found out what really caused his rapid decline or his death, as I touched on in this post as well.  The medical record from his second and final hospital stay - and his death certificate - list his primary diagnosis as brain cancer ("GBM"), which is of course accurate, but here's the confusing part: his death certificate lists a secondary cause of death as "pancytopenia," or low blood count, while the records kept by the hospice nurses during the final days of his life list only GBM.  Although a low blood count is an expected side effect of some types of chemotherapy, it is not one that is typically seen from the type Dad was getting.

However, for an undermined reason, Dad's blood count was low when he was admitted to the hospital the second time, but that was aggressively treated with transfusions, platelets, and medications and had resolved over the time he was in the hospital.  Still, though, his condition continued to decline, and the host of physicians on the case said over and over that they didn't understand why he wasn't getting better.  Several times towards the end of that last hospital stay, the oncologist said, "On paper, he should be getting better."  Not better from the cancer - although the scan did show that there was less of a blood supply going to (or "feeding") the tumor which was the goal of the treatment with Avastin - but better from the horrible infection which we can only assume he got from a compromised immune system.  The oncologist expressed lots of confusion about why Dad's immunity was so low, too.  I didn't think about it then, but I have many times since: what does lower immunity is steroids, and Dad was on a HUGE dose of them, for an extended period of time.  That was never mentioned by the team of doctors as a possible reason for the infection or the problems he was having; in fact, a severely compromised immune system wasn't ever mentioned to us as a possible side effect of that medication.  We were given reams of paperwork about the possible risks and side effects of the Avastin and the chemo, but nothing on the side effects or the risks of the steroids (or the seizure medication he was on).  Dad hated the steroids, and we did too, because of the side effects they caused that we knew about, like insomnia and blood-sugar level spikes; the oncologist insisted that Dad needed to stay on a very high dose of steroids throughout the course of his illness though because he continued to suffer from severe headaches.  Someone later asked me why the doctors never considered whether or not placing a shunt could have helped with the headaches.  I don't know, and, unfortunately, that's just one of many things that was never discussed with us and that we will never know.

I guess second-guessing like that probably happens a lot when a patient doesn't make it, at least on the part of the family.  I wonder if it happens on the part of the oncologist too, though, or if he just crosses that patient's name off on his list and moves on.  I hope there is a review of some kind, perhaps so that something could be learned that could help the next patient.

I would venture to guess that it's not uncommon that not knowing the actual cause of death is unsettling to those left behind.  

I don't understand why no one was able to explain to my family what was going on medically with my dad; I'm not sure if they didn't care to figure it out because they didn't think it mattered since they felt he was obviously terminal anyway, if they couldn't figure it out due to their inadequacies or problems with the medical testing [one doctor told us that scans like CT's and MRI's "just can't really be trusted," whatever the HELL that means], or if they couldn't figure it out because it was truly a medical mystery.  I realize that all of the problems stemmed from the unpredictable nature of neurological disease, but all of the unknown just exacerbates my emotions - anger, sadness, frustration, all of it - even more because it feels like someone, somewhere, failed - failed to figure things out, failed to fix things, failed my dad and my family.

I've always been a right-brain thinker. I like logic and consistency. I don't mind following rules that make sense.  I like sticky notes (like my dad) and flow charts (unlike my dad - he didn't feel the obsession need to visualize the steps or the details like that).  On the flip side and to the point of this post, I have trouble tolerating things that don't make sense, that don't seem fair or logical, and that haven't been explained.

I know that knowing wouldn't change anything and that it probably wouldn't make me feel one iota better if I knew the answers to the questions with which we've been left, but still somehow not knowing disturbs me.  I guess having it remain a mystery just further adds to the shock of the whole thing having happened in such a relatively sudden manner - the diagnosis in an otherwise very healthy person, the lack of improvement despite following the prescribed course of treatment including surgery, rehab, and participation in a clinical trial, and then the rapid decline from which he could not recover.  I think I will always be stuck questioning why the things that weren't supposed to happen happened and why the things that were supposed to happen didn't.  

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.

Struggling

Since my dad went on ahead almost two years ago and especially over the past year, I have been struggling with the fact that the way I see him in my mind is as he was when he was sick, but today when I happened upon a picture of myself helping him walk using his walker I was struck by the fact that he looked even more frail than I remembered.  So now I’m troubled by the fact that apparently I don’t clearly see him as he was well or as he was sick, although maybe the latter is for the better.  

It was excruciating to watch Dad struggle and to witness the physical and psychological effects of his illness as it progressed, especially because I felt that we had all but been promised that there would be improvement after he had gotten the "Magic Bullet drug," Avastin. My heart broke for Dad as I watched him struggle to grasp the severity of his illness, time and time again.  As long as I live, I will never forget the look in his eyes when he was struggling to get around on his walker one day not long after he got out of rehab and he stopped for a minute, obviously deep in thought.  I was holding onto the waistband at the back of his pants, and he looked back at me with tears suddenly in his eyes and said, "Am I handicapped?"  

"No, Dad!" I responded. "You've been through a lot, and you're having to work on some things, but you're going to get better."  I was so sure, and, from my perspective, so was everyone else around us, maybe not that he would be cured but definitely that his physical skills would improve with effort and with time.

But that didn't happen. He didn't get better; in fact, he got worse, and little by little his independence and then his life slipped away.  Or maybe I should say they were stolen, or ripped away from us, because saying they slipped away implies that we weren't holding on and fighting tooth and nail every step of the way, which we were, Dad included.

I don't think he realized that the end was very near for him those last couple of weeks; likely, the invaders in his brain - the cancer, the trauma from the seizure and the surgery, the chemicals in his body that collected as his organs were shutting down and could no longer filter out the toxins, and the array of medicines he was taking - clouded his knowledge of his rapidly worsening condition. I hope so - Dad didn’t deserve to be given a death sentence.  It was heartbreaking enough that the rest of us had to know what was coming down the pipe all too soon.  

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.

Part 47 - Rose-Colored Glasses

Continued from Part 46

I once read that all mammals have approximately the same average number of heartbeats in a lifespan. If that’s true, it means that a smaller animal with a faster heartbeat does not live as many years as a human with a slower heartbeat. If that’s extrapolated to people, then a well-conditioned athlete with a slower resting heart rate theoretically would have a longer life than an out-of-shape person with a higher heart rate.  Not this time, though: that’s what we learned when Dad got sick and what was at the root of the utter sense of shock and disbelief that everyone who knew him felt first when he was diagnosed and then even more so ten weeks later when he died.  

There was no disputing the remarkable physical shape that Dad was in just prior to his diagnosis.  I'm not sure of the exact statistics, but I feel pretty certain that only a handful of 67 year-olds in the world can swim 2.4 miles, ride a bike 112 miles, and then run a 26.2 mile-long marathon, all without a break, and that is the distance of the Ironman triathlon in which Dad was set to compete.  Dad was well-trained, and he was ready for the race, and that was part of the reason we were so shocked by the diagnosis and by the events that followed.

Besides my dad’s exceptional physical condition, there were lots of things that influenced my family’s beliefs about Dad’s prognosis.  Even after the devastating diagnosis with the horrible prognosis was handed out, we had much more of a bias than is typically present about what we thought the outcome would be in Dad’s case because of some specific past experiences.  

Hit by a car while running a marathon ... still lucky!

As I detailed at the beginning of Dad’s story HERE, he had an extensive history of accidents and injuries and even some medical issues that came as a result of his athletic pursuits. More than anyone else I’ve ever known, though, Dad always seemed to have luck on his side in this type of situation (and a little perspective: it’s technically not lucky to end up with a broken leg as a result of getting hit by a car, but Dad always considered himself to be lucky because he considered other potential outcomes); historically, he was very adept at landing on his feet and at successfully dodging a bullet health-wise.

Another thing that made us think that Dad would defy the odds after the diagnosis was our experience with his mom, who had been very ill for over two years and who in fact had been receiving hospice care since the month before Dad was diagnosed.  Just after Grandmom’s 90^th birthday, my parents met with her doctor and, due to severe swallowing problems and progressing weakness affecting her, they were told that she likely had only had a few weeks left to live.  But her doctor and the hospice staff were wrong: she hung in there for almost exactly six months after she entered hospice care, and, in a story I will tell soon, I am certain that her death was directly linked to the timing of my dad’s.  Before she’d had a stroke at the age of 87, Grandmom had lived a very active, independent life, and that’s the lifespan I had expected for Dad (or maybe even longer, given current and future medical advances). Grandmom was tough, but she was obviously a generation older than my dad and, unlike Dad, her health had been declining for several years.  So when I heard the term “terminal” and learned about the expected prognosis for someone with Dad’s diagnosis, I used my family’s experience with Grandmom to our favor and decided to believe that the information didn’t apply to Dad, just like what we were told about Grandmom didn’t come true.  Simply put, I figured that if she could defy the odds and live six months longer than had been predicted, surely Dad, who came in younger and healthier and stronger, could KICK CANCER’S ASS, probably even with one hand tied behind his back!

Although I do it myself sometimes for lack of more appropriate terminology, it really isn’t very accurate when what my dad and my family went through is referred to as “a battle,” because this is another thing I came to realize during Dad’s illness: A battle is something that can possibly be won, and really, against GBM (the type of brain cancer that Dad had), there is no winning.  For many other types of cancer, fortunately, early detection and cure rates are increasing, but not for GBM.  We’d heard so many inspiring stories, even some about people with other types of cancer who’d been given a not-so-great prognosis and had proven the doctors wrong, and we expected a story like that for Dad.  Through networking on cancer support websites on the Internet, I made contact with a few people who had had brain cancer and survived long term, a few even who’d reportedly had GBM.  If they’d survived, why couldn’t Dad?  To me at the time, it almost seemed like a given that my strong, persistent father would pull through since a select few others had been able to do so.  But, as we came to find out, in the vast majority of cases of GBM, it’s less of a battle and more of a siege:

Looking back, I think Dad’s inability to grasp his own diagnosis made it harder for us to do so as well (or possibly: it made it easier for us to stay in a state of denial).  On the day before Dad’s surgery, which happened to be his 67^th birthday, he wondered aloud about the upcoming surgery and about what was wrong, as he put it, and he said, “Well, I know it’s not cancer.  I’m too lucky to get cancer!”

"Correction, Dad," I thought.  You are “too” lots of things to get cancer:  Too in-shape, too much of a positive thinker, too healthy, too in-the-middle-of-life, too much of a land-on-his-feet kind of guy, too much of a Good Guy, too NEEDED by so many people.  Like Dad, I didn’t believe it could be cancer, and, even after we were told that it was, I still didn’t really believe it was or that what would end up happening could happen.

Another thing that contributed to my family’s disbelief in the diagnosis and the potential outcome - to our wearing of rose-colored glasses - was that, given his history and fantastic physical condition, even the medical people involved in the case couldn’t believe the diagnosis or later the decline. One of these people was his doctor, a general practitioner who had treated him for colds and the like for about a decade.  

News travels fast in a small town, and we knew this would certainly be the case in the community in Missouri where my parents had lived prior to their move to Tennessee, the town where my dad’s company was based and where he still resided part-time so that he could work in that office.  And so on the day after Dad’s surgery, my sister Jennifer and I decided to call Dad’s hometown doctor to get his “take” on the situation; I guess it was part of our “leave no stone unturned” plan.  When we got Dr. Rod, as Dad called him, on the line, he said that he had heard the news about Dad.  “I just can’t believe it!  I saw him recently, and I thought he was the picture of good health!” he said.  Me, too, Dr. Rod; me too.  He wondered aloud if a course of steroid nasal spray that Dad had taken in the recent past might have caused a fungal growth in his brain:  “Maybe that’s what some or all of the mass really is,” he said hopefully.  [I later mentioned that idea to the neuro-oncologists at Duke, and they put Dad on an anti-fungal medication, just in case, or maybe just to placate me.]  And that’s how we learned that denial and bargaining are dishes enjoyed not just by those who love a patient but also sometimes by medical staff members too, a fact that we would see yet again with Dad’s oncologist towards the end of Dad’s illness when I had to point out how weak Dad was so that the oncologist would realize that it was time to call in hospice.  It's often said that there is strength in numbers, and what I came to see is that there is also great strength of denial in numbers as well.  With Dad, in fact, it seemed that pretty much everyone involved – at least everyone who knew him as the Ironman athlete that he was – was wearing rose-colored glasses.   

Dad, hammering in a stake to put up a tent in a field, not long before his diagnosis

Another factor related to our expectations about an exceptional outcome for Dad came from Dad’s oncologist and later, on an even greater scale, from the team of experts at the Brain Tumor Clinic at Duke University.  Over and over, we were told that the treatment plan being used for Dad had great healing potential and specifically that the medicine he was getting, Avastin, was “a magic bullet.”  Maybe I just didn’t hear and/or process it at the time, but I don’t recall a risk of a decline at the rapid rate at which it occurred for Dad ever even being mentioned during the pep-talkish treatment plan meeting at Duke or at any of the doctors’ appointments we had.  As the oncologist said the day Dad was admitted to the hospital for the second time, the chemo Dad was on wasn’t supposed to suppress his immune system; an infection as severe as he had hadn’t been seen before in others on the same treatment protocol.

As I’ve mentioned in the telling of this story, I served as the Microscopic Improvement Recognition guard during Dad's illness; whenever I was around Dad while he was sick, I was always on the lookout for even the smallest sign that he was getting better: after the surgery, during rehab, after the Avastin protocol had been started, and even once the massive amounts of medications were administered when Dad was so sick during his second hospitalization, I was diligently watching for an indication of his getting better.  On the day after Round 2 of the Avastin/chemo treatment, when I noticed that he was regaining some sensation in his left arm, I was convinced that was a sign that he was going to pull through.  I even said something to him that night about maybe writing a book one day about his incredible recovery.  “We’ll see,” Dad said, either not really interested in thinking about such a project or not fully believing that he would have such an impressive story to tell (Dad, the Ironman athlete, never thought of himself as that big of a deal; as dedicated, kind, and positive of a thinker that he was, he was also just that modest.)  “We WILL see, Dad,” I told him, with total conviction that he was going to get well.

The last reason for the rose-colored glasses wearing during Dad’s illness was perhaps the most reasonable:  we had to stir in some denial and some hope just to stay afloat in our massive state of shock, in the midst of the trauma.  

Even when Dad was so weak and sick in the hospital right before he went home on hospice, I was convinced that he just needed nutrition and sleep to get better.  I will never forget the words he said late at night a couple of nights before he got to go home:  “I need to remember to tell Mom [he meant my mom – he often referred to her as ‘Mom’ when he was talking about her to my sisters and me] how much I love her and that I couldn’t make it without her.  I am going to fight, as long as you all just help me remember to fight!”

I planned to help him remember and to help him fight, but, after we got him home, I realized it wasn’t really under my control or his.

While our bias was helpful in allowing us to hold onto hope while Dad was sick, it has served as a barrier in the processing and accepting of what ended up happening.  It’s why I thought he would be with us for a long time still, so much so that I left to go home that first Sunday in January after he’d come home on hospice.  It’s why I sometimes still talk about him in the present tense, and it’s why, even after everything, I still don’t fully believe that he is gone.

Up next ... Part 48 - I'll Love You Forever

Part 35 - Hanging On

Continued from Part 34

On the second day of Dad’s second hospitalization, Dad’s nose and cheeks looked red and swollen, but his neck was a little less swollen, his pain was better controlled, and he was coughing less with the medicine and breathing treatments he had received.  

When the oncologist came by for rounds that morning, he said that he expected “to see a neurological improvement as the infection started to clear,” which he expected would happen "soon, given the spectrum of antibiotics being administered."  He said that he was ordering an MRI for that afternoon and that we should plan for Dad to be in the hospital through the weekend, which meant we would be there on Christmas Day. 

We continued taking turns staying with Dad, with two of us there at a time. For most of the day, he was chatty, but, as my sister noted in the Notebook, his words were “mumbly,” presumably because of how weak he was and possibly linked to the pain medications being administered.  He had taken in very few calories over the past few days, but he kept saying that he wasn’t hungry and he got annoyed when one of us asked him if he would try to eat or drink something.

Late that afternoon after the MRI, he requested and finished off some chicken soup, some ice cream, and a Diet Coke, and a few hours later he ate some mashed potatoes and baked apples.  Each bite he ate gave me a little more hope that he would pull through the raging infection, of which we were still waiting to learn the source.  

Nurse Meredith, aka Angie, was with us again for the 7 p.m. to 7 a.m. night shift that second night.  She and Dad chatted about how much she liked her job and, when she told him that she was from Bowling Green, Kentucky, about how great Corvettes were.  When she commented that she thought he was doing much better than the night before, he nonchalantly said, “Yeah, I was supposed to die last night, but I didn’t so I know I am going to get better.”  We exchanged looks over his head and hoped silently that his prediction was correct.

Some Christmas carolers came by and stood in the hallway just outside the door to our room singing, which got a big smile from Dad.  By bedtime that night, he reported that he didn’t have any pain except for his throat and the bedsore hurting, the latter for which a special air mattress had been brought in for him.  

My sister J and I stayed with Dad that night.  Not long after we had turned the lights off in hopes that it would help him sleep, he got a really frightened look on his face and started gasping for breath.  His heart rate shot up; we called for Meredith, who sprinted down the hall to check on Dad but couldn’t figure out what was going on.  Over and over, Dad told us that he was freezing, and then he started saying things that we didn’t quite understand.  Despite the temperature of the room being warm and several blankets being placed over him in the bed, his teeth were chattering so much that we had to strain to understand him.  “I think I’m dead,” he told the three of us, “and I’m starting to wonder if y’all are dead too.”

We assured him that all of us including him were ok, but he insisted that the reason he was so cold was that he was dead and that he thought we were cold too since we were also dead.  “Is this what it’s like when you’re dead?” he asked. “I don’t want it to be cold!”

And then he said something even more puzzling:  “I see Hattie, Mattie, and little Sally over there – are they cold, too?” 

Wanting so much to help him, we looked at each other with wide, scared eyes.  The three of us were almost lying on top of him trying to warm him up and to calm him down.  After hearing him repeat the list of those three names a few times, it dawned on me that he was naming three dogs that had died years ago, and he was convinced that he could see them. Realizing that neither verbal nor physical comfort measures were not going to be effective in battling the panic and the terror, Meredith raced to get a sedative for Dad, and, five minutes later, he was resting soundly.  

Afterwards, Meredith went back to the nurses’ station, and my sister and I sat in the dark room and watched him sleep.  We didn’t know what to make of the episode or what had caused it to happen.  Dad slept for several hours, but we didn’t – the terror he had been experiencing had been transferred to us.

The oncologist made his rounds before the sun was up on Thursday morning; he brought with him the news that, although slightly improved, Dad’s blood counts were still dangerously low and thus he would be getting a transfusion later in the day.  Unlike his previous proclamation (which I had written down word-for-word in the Notebook) about Dad getting “exponentially better,” he said that recovery for Dad was going to be a roller-coaster ride, with improvements and regressions along the way, especially while we waited on the blood count to come back up.  

And then came the big news: the results of the previous day’s MRI.  Dr. O said that the tumor’s size was "about the same" as a month ago.  Given the extreme aggressiveness of the nature of GBM, that was considered to be very good news; the fact that the tumor hadn't grown was a sign that the treatment was working.  In even better news, fewer "areas of enhancement" had shown up on the MRI. which indicated there were fewer blood vessels going to (or "feeding") the tumor.   

“That is exactly the goal of Avastin,” Dr. O proclaimed, but then he went on to say that Dad would have to continue to stay in the hospital until his blood count improved and that it was too soon to predict the timing for the next dose of Avastin/chemo because that was dependent on the blood count.  He told us that he would be off-duty for the three-day holiday weekend but that another oncologist in his practice, Dr. M, would take over in his absence.  Dr. O listed his goals for Dad for over the long weekend as having an improved blood count, eating more, requiring less pain medication, and getting up in a chair.

“Just hold on until after the transfusion, and you’ll have more energy,” he said.  As he turned to leave the room, Dad, who was so exhausted that he had kept his eyes closed during the entire interaction, piped up with a cheery “Will do, Doc!  Thanks for coming by!”

Right after the doctor left, a physical therapist came by, and, with the help of a staff member named Dave whom my sister and I thought was a nurse, she and I helped Dad sit on the side of the bed, which was scary and totally exhausting for him.  Dad said he felt like he was going to fall, and, despite reassurances from all of us, he held on to our arms with a white-knuckled grip. Just moving from one position to another was a MAJOR effort for him, but, with his “no-pain-no-gain expression” on his face, he did it for about three minutes before he had to lie back on the bed to rest.  

When Meredith’s shift had ended at 7:00 that morning, a nurse named Leah had been assigned to Dad, but for some reason there was a change in staff late that morning.  Leah, although not warm or friendly like Meredith, had seemed efficient; the new nurse Jessica had started off acting just short of what I considered rude.  Of course, it was one thing for someone who was supposed to be taking care of Dad to be brusque with me, my sisters, or our mom, but it was an entirely different story when that impertinence was imposed on Dad.  

Helpful Dave brought ice chips, warm blankets, and Diet Coke for Dad throughout the morning.  Dad, of course, thanked Dave but didn’t notice Jessica’s bitchiness behavior, but we did, and, after several snippy comments from her and a few long delays in responding to fairly simple requests that directly related to the provision of patient care, I told the nursing supervisor that I didn’t think it was a good “match.”  

“We’re short staffed,” she informed me, as if that made the level of care acceptable.  

“What about Dave, the nurse who has been helping the other nurses all day?” I asked.

“Dave is our unit secretary,” she told me curtly.  “Really all I can do is for me myself to provide back up for Jessica as needed for the rest of this shift.”  Um, ok then.

Lunchtime brought some chicken soup for Dad, which he ate with assistance, and also a follow-up visit from the Infectious Disease doctor, who informed us that two “bugs” had been identified in Dad’s blood samples, both of which are typically found on the skin or in the mouth or digestive system of people but which, in a person like Dad with a compromised immune system, can go haywire and result in an infection anywhere in the body, most commonly in the lungs (pneumonia), in the urinary tract, in a wound, or in the throat.  The Infectious Disease doctor said that Dad could have infections in any or all of these and that the source was probably his own body.

Wow, I thought, we have put so much effort into sterilizing everything around him and limiting his contact with the outside world for fear that he would get sick, but the problem actually came from within his own body.  I wasn’t quite sure what to do with that information except to feel even more powerless against what was going on; despite our best efforts, the protective shield that I thought we had put up around him was eroding a little at a time.

Up Next … Part 36 – ICU 2.0