Awareness and Darkness

In a recent dream I had, someone said to me that I have dark humor.  In the dream, my response was that it isn’t humor.  

“Touche’, Dream Self, and how astute,” I thought when I woke up and remembered that part of the dream.  In actuality, I do feel dark, angry, and ripped off.  

Sometimes I feel like I am I the only one out there who is as angry as I am, about suffering such loss, about stupid Cancer, about unfairness, about what is even though nothing about it is right.  I'm having a hard time coming up with any gratitude about my dad's passing or any peace about my dad flying around in the clouds with the angels now that he's gone; I just want him back, healthy.  Even though I'm glad he isn't suffering anymore, really, I know that saying that is just a bargaining chip, and the deal we ended up with isn't nearly the one we should have gotten.  I don’t buy the idea that he is in a better place, somewhere that we should be glad that he got to go when he did.  I get that some people believe that and I guess that’s bully for them if that brings them peace.  It’s not ok with me, though, that my dad was taken so early from this Earth, from this family, from this life where he was still meant to be.  It sucks, and even saying that seems like an extreme understatement.

Sorry - but I can't see how something like this does SHIT to help anyone else.

Sometimes when I hear about this or that week or month that’s been designated for some kind of cancer awareness, it pisses me off.  A lot.  Who in THE HELL isn’t AWARE of CANCER??  So, ok, maybe we all need to have our moles checked more often and be reminded that we should wear sunscreen and not smoke, but, other than that, I think we’ve got AWARENESS covered.  What I’ve had to become AWARE of since my dad got sick has been equally as devastating as the fact that there is Cancer in the world.  Here are the fine points of this Awareness and the Darkness: People you love will get sick or hurt and will die. Some people will get cancer and some won’t; some of those who get it will survive and some won’t, and the determining force between the will and won’t in all of this is a crapshoot. Healthy habits, good deeds, karmic credit, income level, family support, positive attitude, level of education, insurance coverage, prayer, bargaining – it is quite likely that none of this will make any difference at all in whether or not a person survives.  Some of the people who get cancer and some who die will be way too young.  Some of the people you care about will suffer, some maybe even a lot.  In some cases when you are hanging onto the end of your rope by the skin of your teeth, trying to cope with illness and grief, some people won’t care. Some won't notice. They will go on about their lives as usual.  At some point in life, each of us will be brought to our knees in grief, and then, even though the layers of sadness and anger will continue to peel away, there will always be a feeling of rawness for which there is no effective salve.

I freaking hate that I am aware of those things now. I hate it when people hear about someone who has gotten very ill or who has passed away and say, “But I just saw her yesterday!”  or “I was just thinking about him this morning!”  As if that is some kind of an insurance policy or a shield that can keep bad things from happening!  I hate that I know that there really is no protection from suffering and death and that I am aware that we are all just one phone call away from our knees.  I detest having the awareness that it’s really inaccurate when someone says a person’s death was “unexpected” or "untimely."  I hate that I know statistics about brain cancer and that I am aware of how different it is from other kinds of cancer, even if those cancers have spread to the brain.  Sometimes I even feel guilty about the people who have gotten a brain cancer diagnosis since my dad did because we weren’t able to help my dad beat those stupid odds; I really thought we would and that we would then be in a position to offer Hope to others in the future.  

I hate that I know what tumor fever and mottling are and what happens to a human body as it starts to shut down, no matter how healthy it was just a short time ago.  I hate that I will always have to wonder if the treatment we chose for Dad was what made him sicker than the cancer was making him at that point.  I hate that I feel like I have to just be grateful for certain things instead of being angry and wanting more.  

As in my dad’s case, for many cancer patients and their families, at some point in their treatment, the big question becomes not “What will result in a cure?” or not even “What treatment will allow for life to continue the longest?” but rather “Which treatment is the least likely to do harm?”  I hate that I know first-hand that sometimes the best option may be no treatment, even though that feels like throwing in the towel.  I hate that I am aware that not even the doctors or the researchers know what the best treatment is for many diseases like cancer and thus they leave treatment decisions to the patient and/or his family.  Really?  That’s like handing someone a loaded weapon and telling them you’re not sure if it will work as intended, end up being useless as it fails to function, misfire, or just explode in their hands randomly, but at the same time telling them that if they don't man-up and use the weapon to try to protect themselves in spite of the risks, they will surely die anyway. I don't think it technically counts as rolling the dice if there isn't an option of not rolling at all.

When I first heard the "NEGU" (Never Ever Give Up)  creed that is going around in cancer circles, it infuriated me because I felt that it was implying that treatment for cancer should never be stopped and that if it was, the patient and/or his family were wimping out.  Lately, though, I am realizing that what happens is that our awareness - our perspective - about what "giving up" is changes as we are being forced to watch our loved one suffer and as we begin to bargain for lack of having the power to do anything else.  We start to see the continuation of aggressive treatment as something bad and start to look at the cessation of such treatment as fighting and as letting go as we prepare for what comes next as being strong.  That isn't right, to have that awareness or to be forced to make ourselves think that way when what we really want to do is ball up in a corner and cry or kick someone's ass.  That type of awareness is like smelling rotten kitchen trash; before you experience it first-hand, you think it sounds horrible, but, once you're actually in the midst of it, you realize it's even worse than you ever thought it could be.

When I look back at the couple of days that my family had to find and choose an oncologist for my dad, while we were trying to take care of him post-brain surgery and while we were reeling from the shock of the news of the diagnosis, part of me knows that we did the best we could do at the time, but part of me wonders why we didn’t find a way to interview more than one doctor for the job.  I wanted an oncologist who was brilliant about more than just cancer cell replication and chemotherapy, one who never failed to answer our questions, one who cited studies and considered and discussed with us all of the possible options.  Of course, I wanted one who was capable of saving my dad, but, failing that, I wanted one who took each of our concerns seriously and saw the urgency in everything that needed to be taken care of, one with enough steely competence and compassion to take care of my dad, even if the treatments available couldn’t save my dad’s life.  

I really thought our guy had all of those qualities, but I guess like a lot of things in life, that is something that cannot really be determined until it’s too late to change course.

I realize the primary objective of an oncologist is to cure cancer, and, then, second to that, to treat it.  But what about after that, what about treating and caring for the whole person?  Or even – best case scenario – caring for the whole family?  Where is that in all of this Cancer shit?

Really none of those things ended up happening in our case, and I am left with such confusion and extreme disappointment in the medical team as a whole, not just because of the outcome, but because of the things that happened or didn’t happen in the process.  My mind sometimes flashes back to the scene from when my mom, my sisters, and I sat down with the oncologist in Dad’s hospital room, with him in a drugged sleep in the bed in the middle of us, and discussed stopping treatment.  I can still picture the doctor, with tears in his eyes and such a genuine look of compassion on his face, as he told us that we were making the right choice to take Dad home on hospice and then that, although he wouldn’t continue to “officially” be Dad’s doctor (a hospice patient is typically transferred over to the service of a physician associated with the hospice agency), he would call the following Monday to check on Dad and on us.  

At the time, I felt like he was totally on our side, and that felt almost as right as the decision to sign on with hospice did to me.  But later, when he didn’t call us to check in, not that Monday, not EVER, I am left to wonder if my impression of him and my memory of the compassionate expression on his face that day were all as inaccurate as my belief that Dad would beat brain cancer were.

And therein lies an example of the darkness that still surrounds me: the haze of the confusion about what really happened, the memories of my family as we clamored around in vain to try to find something that would get Dad better, and, of course, the questions that as far as I can tell will always remain unanswered:  things like  - Why did Dad have almost no symptoms at all until he was so stricken by the cancer and later by the infection in his body? Why didn’t he ever get any better at all, despite the surgery, the rehab stay, and the treatment he endured (and despite what all those “expert” doctors said)? What caused his immunity to drop so low and him to get so sick that he couldn’t recover? Why did he die when the scans showed improvement?  Why did the oncologist not see how he wasn’t getting better?  Why were we only presented with some of the treatment options, beginning with the brain surgery that didn’t help him at all and ending with the offers for treatment plans that were totally unrealistic when he was so sick that he couldn't lift his head from the pillow in his hospital bed? 

And of course, the mainstay: How (why) did he get brain cancer in the first place?

There again is the darkness, that which threatens to pull me downward in the blink of an eye.  There again is the fierce fury that feels so fresh and even more intense than the day my dad died, the rage that makes me want to rip someone's throat out except for the awful awareness that I have that doing so (or doing anything else, for that matter) won't help a damn bit. The only thing that keeps me afloat is something else of which I have also only recently become aware:  I have a secret weapon - the perspective that Dad left us with, the one that helps me keep some faith in the human spirit and that allows me to hope that this grief won’t always hurt this much, the one that allows me at this point and even with all of this baggage to believe that even if it does that I am strong enough to withstand it.

"You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved.  But this is also the good news.  They live forever in your broken heart that doesn't seal back up.  And you come through.  It's like having a broken leg that never heals perfectly - that still hurts when the weather gets cold, but you learn to dance with the limp." ~Anne Lamott

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 44 – Hospice, Part 2 - Through the Night

Continued from Part 43

(Note:  This is a follow-up to Hospice - Part 1.) 

There in the hospital bed in my parents’ den on New Year’s Eve, it was so apparent that Dad was so sick.  Yet I was still desperately clinging to the Hope that just being at home would help him.  I don’t think that I still thought that a cure - or even long-term survival - was a possibility.  At some point in the days before, I had bargained those things away:  Just let him feel better, just let him get home, just let him not be scared or in pain, I thought.  He was home, and we were so, so glad and grateful for that, but we were still waiting on the other two parts of the Deal to come through.  

There was a definite sense of protectiveness in the house at that point; we were all racking our brains for what else we could do to help Dad.  My brother-in-law Peter brought him food and a Diet Coke from Sonic, but he slept so long that the food got cold and the drink got watery from the ice melting.  My sister Nancy figured out how to empty the catheter bag, and we carefully administered the medications right on time.  We cut one of Dad’s shirts up the back and gently put it on him, and we kept him covered with blankets so he wouldn’t be cold.

We kept telling ourselves that we weren’t painting ourselves into a corner by deciding to sign up for support from hospice; we said to ourselves and to each other that we could always revoke.  I didn’t want anything to be for sure; looking back now, I think I had to keep the door open in my mind to keep from completely crumbling.  At the time, I kept thinking about that picture of a bird that has been caged and is being let go and below the picture it says “If you love something, set it free.” Every time that picture popped into my head, I thought SCREW THAT!  Dad isn’t caged except by this monstrous cancer and the pain and anguish it’s causing him, and he doesn’t want to go!  We didn’t want him to go either – and I wasn’t sure that I could stand it if he did – but we wanted the suffering, which was so undeniable at that point, to be over for him.

As the clock moved closer to midnight on New Year’s Eve, most of our group went to spend the night at my aunt’s house nearby.  Mom went to lie down in my parents’ bed in the bedroom, and Jennifer and I planned to split the night taking care of Dad, with Peter providing back-up support when we needed help to reposition Dad in the bed or to get medicine or something to drink for him from the kitchen.  Jennifer took the first half of the night; when I tagged in for the second half, she told me that Dad was uncomfortable and anxious and that he really seemed to want someone to stay right with him.  She had pushed one of the couches over so that it was right up next to the hospital bed, but the bed was higher than the couch and so she had been lying wedged in between the couch and the bed so that she could hold Dad’s hand and be close enough to him to hear his gravelly voice without disturbing or hurting him.  Just like the New Year had slipped in unnoticed in the house, I slipped into her place on the couch as she slipped out. Dad didn’t react at the time, but a little while later, when he opened his eyes and saw me there, he did a roll-call of sorts: he asked me where every person in the family was, as if he were just checking to be sure they were all ok.

We were quiet for a while, but I could tell he wasn’t asleep.  Then, with great sadness in his voice, he threw out words that cut me to the core: “I wanted to go out like a man!”  I wanted to tell him that he wasn’t going anywhere, but I knew in my heart that I couldn’t make that promise anymore.  So I told him about something that I remembered from many years before:  I reminded him of one time when he'd had to quit in the middle of a race he was running because his calf muscles had cramped up.  He’d hobbled along the road until he couldn’t anymore.  We pulled up beside him in the car, and he got in and propped his legs up on the dashboard.  I could see that his calves were in knots, and I could see the pain in his eyes along with the shame and disappointment he'd felt as he’d told us that his body just couldn’t go any further.  That night, I looked at him lying in that hospital bed, and I could tell he was listening intently.  I wanted him to realize that he just needed to keep going for as long as he could but that, when he couldn’t do it anymore, we would understand, we would know without a doubt that he'd given it his all, we would still be fiercely proud of him, and he would not be any less of a man or worthy of anything less than complete respect.  

He took all of that in, and then he said, “I guess I’m glad you remember that story.”  

“Why?” I asked hopefully. “Because it was a good lesson in knowing that even the toughest of people have limits?”

“No,” he said, “Because it means that nothing is wrong with your memory, so that means you don’t have a brain tumor.”

I was trying hard to keep up with his thought process, but I was struggling. “Dad!" I said. "You remember it too!  It’s just part of your story, and I know you remember it.”

He thought for a minute, and then he said very seriously, “Yes, but I don’t think I always will, or maybe I just won’t always be able to tell about it or other things that have happened.”

Maybe I wasn't sure of exactly what he was saying, or maybe I just didn't want to be sure.  “Don’t worry, Dad,” I told him, grateful for the darkness of the room that I thought was hiding my tears from him, “I’ll remember all of the stories, and I’ll tell them all.”

He dozed for a short period of time after that, and I remember lying there thinking about how when I was growing up, my mom had always said that whatever you are doing on New Year’s Day would be indicative of what you would spend a lot of time doing the rest of the year.  I closed my eyes, but even that didn’t keep the tears from falling furiously as I wished with all of my might that that would be true, that I would get to spend more time with my dad in the New Year. 

Coming Soon ... Part 45 - Spending Time

Part 32 – Falling

Continued from Part 31

Falls separate people in a very literal way: the careless from the careful, the clumsy from the coordinated, the weak from the strong, the unlucky from the lucky, and - as in our case - the unhealthy from the healthy.  After a fall, one's first instinct is to reassure everyone, including himself, that it was "no big deal," that he is "just fine."  It is natural for the one who has fallen to want to “shake it off” and forge ahead as if it didn’t happen at all.

This is an exceptionally hard part of my family’s story to recount because it involves two falls for my dad that marked a turning point for him and for us, watershed moments when Dad stopped being embarrassed about needing help.  After the past couple of months of having given it his all to pretend that he didn't need assistance, he was completely drained, and it was the beginning of a struggle from which we just couldn’t disengage. It was heart wrenching and very sobering to see Dad’s acceptance of help after these falls and to see that he was starting to understand just how sick he was.

No one involved in what happened with Dad over the next couple of weeks could give any reassurance that things were ok or any explanation as to why he had gotten so much worse or why he couldn’t recover.  We were on our way to the front lines of the battlefield, and we were soon to learn that we had only thought we knew what difficulty and devastation were.

On the Monday before Dad was scheduled for an MRI on Tuesday and Round 3 of chemo and Avastin on Wednesday, my sister stayed at our parents’ house with Dad, and Mom went out for a break with her two sisters.  In a few hours’ time, Dad got up and sat for awhile in his recliner in the den and ate a few bites of food at my sister’s insistence, and then he said that he needed to get up to go back to the bathroom.  As we had been doing over the past several weeks to help Dad with his balance whenever he walked, my sister held onto the waistband of his pants from behind him to try to steady him.  As she recounted later, he seemed more unstable and weaker physically than ever before.

A few steps into the hallway, Dad lost his footing and fell to the ground just behind the couch.  My sister cushioned his fall with her body, turning the fall more into more of a controlled collapse, but once Dad was down, he couldn’t get up.  He tried, she tried, and they tried together to figure something out, but nothing worked.  In the midst of their efforts, the doorbell rang, and my sister could see through the windows by the front door that it was Dad’s swim coach Ashley.  She motioned her to come in, and together the two of them were eventually able to get Dad up using the back of the couch for leverage.  After they helped him back into his recliner, he strangely acted like nothing had happened, even though he and my sister both had been in tears and had spent at least half an hour feeling utterly helpless on the floor before Ashley had arrived.  Dad had great admiration for his swim coach, and my sister said later that she thinks the fact that Ashley was there was the only reason Dad was able to muster enough strength, courage, and perseverance to get up and act like he was ok.  

After Ashley left, the Occupational Therapist came for a therapy session that had been scheduled the day before.  My sister told the OT what had happened, but he really didn't seem to understand and/or care.  He had Dad do some hand exercises from the recliner in an extremely short therapy session in which Dad was very obviously totally disinterested and disengaged.  My sister asked the OT to help her get Dad to the bathroom before the guy left; he acted annoyed, but he agreed.  The two of them assisted Dad in getting up and behind the walker but quickly realized there was no way he could walk at all; he was just too weak.  They ended up pulling a dining room chair over to Dad and lower him onto it, and then they pushed him in the chair along the hardwood floor into the bathroom and then into the bedroom.  Once they got him back into the bed, Dad immediately fell into a very deep sleep.  It was so undisturbed and so very uncharacteristic for Dad at the time that while he slept over the next few hours my sister sat in the bedroom on the floor and watched his chest rise and fall the whole time.  At one point, she took a video of Dad’s breathing pattern on her cell phone and then called me to tell me that something just seemed really, really wrong.  (By the way, the therapist hauled ass out of there right after Dad was back in bed, leaving my sister alone at the house with Dad with no way to get him out of the bed if he needed the bathroom again or anything else for that matter.)

I had planned to arrive at my parents’ house the next morning, and, since Dad wasn’t hurt physically, we decided to just let him rest until then so that the three of us could get him to the appointments as scheduled over the next couple of days.  In full Bargaining/Denial mode, I told my sister and myself that Dad had just worn himself out with all of the activity over the past couple of days and that he just needed some extra rest.

That night, as was the routine during that time, Mom took the first shift with Dad, talking to him about the plan for the next day which included the MRI, the visit with the neuropsychologist, and the candlelight church service.  Dad was still very anxious about the MRI but seemed to accept that we would be right there with him when the results were read the following day and that we just needed to get through it and then go from there.  

Around 3:00 a.m., Dad informed Mom that he needed to get up to go to the bathroom.  She turned on the light and then helped him get up with the walker and into the bathroom adjoining their bedroom.  Dad had been soloing in the little “toilet stall” room and did the same that night, but after going to the bathroom he lost his balance.  He fell against the wall and slid to the ground.  Mom yelled for my sister, who rushed in to help.  It was a repeat of the afternoon fall, except that this time even two people wasn’t enough to support Dad.  They tried different maneuvers and various strategies but nothing worked.  Finally, in desperation, they called 9-1-1.

Thinking that Dad would resist having other people come in to help, neither my sister nor Mom wanted to tell Dad that they had made the call.  The ambulance arrived in a matter of minutes, and, when Dad saw the paramedics, a look of sheer relief washed over his face.  Two strong men carefully picked Dad up and put him back onto his bed.  They checked him over and declared that he somehow didn’t have any breaks or bruises, but after some discussion it was decided that they should transport him to the hospital due to concerns about the decline in his physical status that seemed to indicate a worsening in his medical condition. 

Mom rode with Dad in the ambulance; Dad’s anxiety actually seemed to be mitigated by the decision to go to the Emergency Room.  My sister called me and told me to meet them at the hospital instead of at my parents’ house as planned, I called our other sister, and we each began to make our way back to the hospital.

Up next ... Part 33 - Hospitalization 2.0

Bargaining

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

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

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

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

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

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

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

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

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

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

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

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

Shhhhh! It's Brain Cancer! (Part One)

The day before Dad had the surgery to confirm the diagnosis and “debulk” the brain tumor, he had a full body scan to rule out the possibility that cancer had originated in another part of his body and then spread to his brain.


When we were told that the scan was clear (meaning he didn’t have cancer except in his brain), we were so happy. The neurosurgeon must have thought we were so naïve … and thankfully, at the time, we were: a few days after the surgery, we met with the oncologist and learned that cancer that originates in the brain, which is called “primary brain cancer”, is much more deadly than cancer that has metastasized.


It seemed the more we learned about Dad’s condition, the worse the news was.


The definitive diagnosis of glioblastoma multiforma (GBM), the most aggressive type of primary brain cancer, didn’t knock me to my knees at that point, though; I remained firmly seated in the lap of Denial, sipping on a frozen cocktail of Bargaining and snacking on a side dish of Hope.

How many celebrities can you name who have had brain cancer?


How many can you name who have had breast cancer or another kind?


OK, that’s not entirely fair because brain cancer is relatively rare, but the point is that it’s in a league of its own as compared to other cancers. Brain cancer is like a hybrid of Cancer and a neurological problem like a traumatic brain injury or a stroke. The difference between brain cancer, particularly the most aggressive type which is what my dad had, and the latter is that it’s progressive, and it’s fatal. A person with glioblastoma multiforma (GBM) is not likely to get much better and not at all likely to walk away from it or to survive it long-term.


In our experience, GBM is so different from other types of cancers in that it so often strips the person not only of the ability to fully grasp the implications of their diagnosis but also of the ability to fully participate in treatment and end-of-life decisions.


Here's what we were told in the first week after Dad was diagnosed with brain cancer:


*The type of cancer he had is a Stage IV brain cancer called Glioblastoma Multiforma (GBM).


*It's relatively rare; there are about 12,000 new cases diagnosed in the U.S. each year, which translates to only about 1% of new cases of cancer diagnosed annually in our country.


*It's tricky: GBM is generally found in the cerebral hemispheres of the brain and is capable of very rapid growth. The location is particularly catastrophic because it frequently affects motor skills, cognition, and things that affect personality traits like mood and memory. The location and the shape of the tumor also affect the ability of the surgeon to "get it all" - in fact, most of the time, neurosurgeons end up saying it's too risky to try to remove 100% of the tumor during surgery, which leaves little "seeds" of tumor behind, which can double in size in as little as THREE WEEKS. GBM is “fed” by many blood vessels which multiply rapidly. Cells in this type of cancer change, or mutate, quickly, which adds to the challenge of treating it.


*Less than 10% of newly diagnosed GBM patients survive even five years.


*Treatment depends on where the tumor is located, the type of tumor, a person’s age, and general health of the patient. Unlike many other types of tumors, there is no "cut and dried" treatment option for GBM. Given the "standard" (most researched and recommended) of care for this type of cancer, a pill-form of chemo and radiation, a patient has less than a 5% chance of surviving up to two years.


We didn’t tell Dad that the mass in his head was suspected to be malignant before the surgery because we didn’t believe that it was. We saw Dad as exceptional, and we had proof: he was often mistaken as being at least 10 years younger than he was, he could (and did, on a regular basis) physically out-perform most people half his age, he was in great shape, and he had beaten the odds many times before when he had had other potential medical crises. Personally, until a couple of weeks before Dad died, I was convinced that he would not only survive this terrible disease but that he would beat it hands-down.


It is very difficult to break the news or even to witness the news being broken to an adult who has a life-threatening condition. We had to do this at the same time we struggled with the cold-hard reality of the situation ourselves, and we had to do it repeatedly. Dad initially took the news that he had brain cancer in a way that was so admirable and impressive but that was not surprising to anyone who really knew him: I had always known him to face adversity head-on, and that’s just what he did when he was informed of his diagnosis.


However, though, because of the problems with short-term memory and reasoning that the remaining tumor was causing, Dad forgot part or all of the information pretty often. Looking back, I see now that he likely was drafted into joining Team Denial as well, which also hindered his ability to adequately process the diagnosis. Useful, I suppose, in that it allowed Dad and the rest of us to put one foot in front of the other, but also troublesome because we had to explain what was going on to Dad over and over. And that seemed so much worse than a single session of news-breaking.


Even when Dad couldn’t fully deny the whole “Big C” diagnosis, he didn’t really “get it,” either; for example, once when we were in a waiting room full of people at the oncologist’s office, he said loudly, “I’m just glad I don’t have REAL cancer like some of these people in here!”  He regularly talked about when he could go back to his job as a commodities broker, when he could drive again, and when he would be able to get back into "Ironman-shape," even as he had trouble with basic living skills.  (I'm not sure if Denial is a team or a contagious condition, but, either way, we all had it going on BIG TIME, and Dad was no exception.)


So the Secrecy of Brain Cancer starts as soon as the hint of the diagnosis first comes out. Is it better to tell the patient right away what the diagnosis is likely to be? Is it better to let the doctor tell him? Is it better to wait and make SURE the doctors know what they are talking about, since many doctors see less than one GBM patient per year? When you do tell the patient what the diagnosis is, is it better to tell him the prognosis? Is it better to let him ask what it is and if/when he does, do you tell him the whole truth and nothing but the truth? Is it better to explain (and re-explain, when he forgets or doesn't understand) all of the treatment options, even though you don't he doesn't understand the diagnosis or the prognosis, or is it better to just decide for him? Is it better to give him options, and, if so , how many and which ones? Or is it better to just tell him you know he wants to fight like hell and then push forward because you are convinced that's what he would decide if he could? How much hope do you give him - is it better to tell him you're sure that he will get to go back to work, to go back to doing the things he loves, TO LIVE?


We didn't know the answers and we still don't. The only things we knew for sure at the time were these: NONE of our options were good, and we were in this together.

To be continued ... 
                                                     CLICK HERE TO GO TO PART 2