Friday, March 15, 2013

There's No Place Like Hope

At about the same time that my dad was diagnosed with terminal cancer, one of his best friends was also diagnosed with cancer.  His friend had to go through surgery and chemo during the same weeks that Dad did.  That friend was so sick that he couldn't attend Dad's memorial service after Dad died.  And that friend has been battling his disease ever since, dealing with more surgeries, more chemo, more complications, more pain.

I know it must have been so hard for his friend to miss the memorial; I'm sure it must have been really tough for him to assimilate what had happened to my dad over a relatively short amount of time, during which my dad and his friend did not have contact with each other because they were both so sick.  My dad, in fact, was never told of his friend's illness; Dad was having such trouble grasping the facts of and coping with his own diagnosis, and, as I've mentioned before in regards to my grandmother's declining health, we felt that it would have been unbearable for him to hear about serious issues befalling someone he loved, especially when he was powerless to help that person.

My dad and his best friend Bob, many years ago, just before the Boston Marathon

Recently, I emailed my dad's friend to let him know that I have been thinking about him.  In his response, he said something that gave me pause: he said, "I have a chance, and I guess that's all you can really ask for in this life."

I think he's right; as long as a person has a chance, as long as they have hope, they can look forward to something better, and sometimes that's all a person needs to keep going.  

The dictionary says that hope means "to expect with confidence."  I think there's more to it than that, though.  I think hope is somehow genetically woven into our beings so that we can survive, even through the roughest of times. We are fueled and inspired by stories that bring us hope: hope and trust in mankind, hope that other people will help us when we need help, hope that tomorrow will be a better day.  We say that it gives us hope to hear about others who have succeeded or who have had something good happen to them - and we are so intrigued and motivated by the exchange of hope that there is even a website called Gives Me Hope where people can submit their thoughts about things that have happened that inspire them to hope and that allow them to believe in the potential.

For a long time after my dad died, I felt foolish when I thought back to the way we were so hopeful that he would beat the odds.  I felt like I'd somehow been tricked or that I'd misinterpreted the information in such a major way that I could never again trust that what I was seeing real or true.  Looking back at my Facebook posts from during the time when Dad was sick and seeing things I'd said like "starting to feel at least a little hopeful," I felt ashamed at the way I'd stepped out of character and had let my emotions overrule my logic.  I felt like the hope that I had clung to during Dad's illness had been unfounded, irrational, desperate, even ridiculous, but, over the course of the last couple of years, the words of my dad's friend and a few other things that have happened have caused me to start thinking of hope in a totally different way.

While my dad was sick and in the months that followed his death, I was active on a couple of websites for brain cancer survivors and their families.  I posted and commented and read the posts and comments by others about various treatments for GBM and other types of brain cancers, and through that forum I made contact with some people who had outlasted the prognosis of their disease, a few of whom had been diagnosed with GBM and had not only made it past the predicted two-year "maximum" survival time but for years or even decades longer.  While my dad was sick, I was desperate to find out what these people's secret to survival was so that I could find a way to try to make that same set of circumstances happen for Dad.  After he died, I still felt a need to know: What had these people done that we hadn't?  How had they made it, when Dad couldn't?  I'm still signed up on one of those chat boards, Cancer Compass; I don't post anymore, but I always read the new comments about long-term survival of GBM.  It might seem like I would see that as a point of sadness, or frustration, or injustice, but for me it serves more as a point of scientific curiosity - and of hope.  

In the summer after my dad died, a friend of mine who had been combatting cancer found out that her cancer had relapsed again and that she needed radiation treatment.  I offered to drive her to some of her radiation appointments.  The hospital where she had to go daily for several weeks was about a 45-minute drive from her house, and she and I commented several times during those weeks and afterwards that we had enjoyed having that time to talk to each other on the way to and from the appointments.  

I admired this friend a lot; I had always thought that she was full of great advice and, since she'd been diagnosed with cancer about five years before, of tenacity and true grit.  She was one of those people who is so easy to talk to, a great listener, someone whom I'd always felt like I wish I'd had more time with so I could get to know better.  On one of our commutes that summer, she and I had a conversation about how we both had a hard time asking for and accepting help from others.  I commented that I was much better at giving help than at receiving it, and my friend thought for a minute and then said, "I guess in a way it's helpful to let someone help you, if you think about it," words on which I would end up reflecting back countless times since then and that later inspired a perspective shift and this post about my perspective about gratitude, blessings, and philanthropy: A Gift Received.

In another conversation during one of our drives, I asked her and she told me about the timeline of her illness.  She filled me in on details that I hadn't known from along the way, including the fact that when she was first diagnosed she had been told that her cancer wasn't curable.  "How do you deal with that?" I asked her, and she responded in a voice that conveyed unlimited courage and conviction, "You just do.  For me, I just keep hoping and believing that if I can stick around long enough, somebody will find a cure. I am fighting to stay alive not because I fear death, but because I love life.  I am thankful for every day that I have in this life, but at the same time I want more, and I hope that that's what I will be given."  

Through those words and through the words of my dad's friend and those of other long-term survivors, I've started thinking of hope as good, necessary, supportive, even power-inducing; I guess my perspective about hope had changed so much that, despite what actually happened with my dad, I now don't regret carrying that hope.  I now deeply believe that there’s no such thing as false hope: I think that all hope is valid, even for people who have been given an awful prognosis like we were, even when hope would no longer appear to be sensible.  Because as far as I'm concerned, sensibility went out the window the second we heard that my dad had brain cancer. 

"I believe that imagination is stronger than knowledge - myth is more potent than history - dreams are more powerful than facts - hope always triumphs over experience - laughter is the cure for grief - love is stronger than death." ~Robert Fulghum

Tuesday, March 12, 2013

Not So Much

I like to think of myself as a bit of a maverick of sorts, someone who is capable of being a badass, a person who could pick up a car to rescue somebody in an extreme situation, a person who would go all out to help someone who needed help.  I wonder if most people think that about themselves or if that's just me.   

Yesterday I had two opportunities to do something to help another person, and I don't think I could have predicted either time what my reaction ended up being.  

The first situation happened just after I'd gotten to the dog park with two of my dogs.  There's a basketball court over to one side of the fenced in off-leash area where dogs are allowed to run free while their owners supervise.  Probably because it was chilly and overcast outside, nobody else was in the fenced area when I got there, and, as I stood there watching my dogs do their initial sniff-and-discovery routine, I noticed a group of about a dozen teenagers standing in a disorganized-looking circle on the court.  A few of them were yelling, but I couldn't hear them enough to tell what they were saying.  The only girl in the group had a little video camera and appeared to be filming some sort of action.  I was curious about what she was doing, and so I walked a few yards over in the fenced in area so that I could have a clearer view of what they were looking at.  

It was a boy, on the ground, being punched by another boy who was on top of him.  I started to be able to make out the words that were being shouted by the kids who were watching; it was the usual jeering and goading associated with a brawl.  Just a second after I recognized what was going on, the boy on the ground scrambled to his feet and took off running towards the entrance of the fenced area.  As he ran past on the other side of the fence from where I was, I said, "Are you ok?"  Without breaking his stride, he quickly glanced in my direction, brought his hand up to wipe the blood and tears from his face, and quietly said, "Yeah."  I watched him run past to the opposite side of dog park and into the little concrete block building where the restrooms were.  

And then I saw two of the other teenagers break away from the group on the court and start walking towards the bathroom.  One of them was clenching and unclenching his fists.  

I already had my cell phone in my hand; I sometimes take pictures of my dogs playing at the dog park so I usually have it at-the-ready when I'm there.  As the boys walked across the parking lot, I dialed 9-1-1 and told the operator what I'd seen and that I was afraid the boys were going to follow the kid that had been beaten up into the bathroom and corner him.  

I considered using my teacher-voice and telling the boys to leave him alone.  I considered following them.  I considered taking my dogs back to my car and driving over to right in front of the little building and sitting on the horn to create a distraction.  But I didn't do any of those things.  I just stood there trying to calculate all the possible outcomes from each of my possible reactions; I was telling myself that the police would get there any second and that it didn't make sense for me to get so involved that I would be putting myself in danger.  

Luckily, I live in a town with a generally quick-response law enforcement reaction time, and as I stood there watching the boys approach the bathroom, a police car pulled up in the parking lot.  The officer saw me standing at the fence and rolled down his window.  I told him where the kids were, and he quickly drove his car over to the concrete building, parked, and swung open the entrance door to the bathroom, which the two boys had walked right past when they'd seen the officer's car approaching.  A minute later, the officer came out with the injured boy, who'd evidently cleaned himself up and had blood-tinged toilet paper stuffed up both of his nostrils.  Neither of them looked in my direction as they walked towards one of the little houses that was just across the street from the park to what I guessed what the boy's house.  

A minute later, a woman with a dog parked her car and came into the fenced area with her dog.  I told her what had happened and we talked about how glad we were that it hadn't been worse as we watched our dogs sniff and then chase each other around.

I was feeling pretty cowardly later as I considered my lack of real reaction, though, after I'd left the park.  I'm not sure what I wished I'd done; I know that I was realistically limited in what I could have/should have done.  But it still feels like I'm letting myself off the hook too easily, and it still sucks to realize that not one iota of badassness came forth from within me when it was needed. 

The second thing happened at the grocery store, which is where my bruised ego and I went after we dropped the dogs off at my house.  I did my shopping, waited in line, and was getting checked out, when a bag boy (I feel like that term isn't P.C. especially when said "boy" is actually a man older than I am, but I'm at a loss as to what other wording to use here.) came over and started sacking my groceries. He turned to the older guy (bag boy?) who'd been sacking and said, "I'm supposed to take over for you since it's your turn to go on break."  The old guy said, "OK. Did they tell you I have to go on break now or just that I could if I needed to?"  Before the first guy could answer, the checker said, "He doesn't know; he wouldn't know" in what I thought was a very condescending tone of voice.  I should add to this that the slightly younger sacker, whom I've seen in the store many times over the years, appears to have some sort of developmental disability; I, of course, don't know his diagnosis, but it's apparent that he has some special needs.  That said, though, OF COURSE he didn't deserve to be treated as if he were incompetent or anything else, for that matter.

If you know me, or maybe even if you don't, you can probably see where I'm going with this.  For some reason - maybe he hadn't heard her, or maybe, like me, he just couldn't believe the way she's said that - the older guy said, "What?" and the checker repeated her rude, inappropriate statement as if the younger checker couldn't hear her.  Just like at the park an hour earlier, a few different scenarios played out in my head over the course of the next few seconds.  The checker continued to scan things, and the stuff was piling up at the far end of the conveyer belt as the two bag boys just stood there, apparently waiting for someone else to say something.  "That's not very nice," I finally said to the checker, who didn't look up from scanning as she casually said, "Huh?"  "That's not nice; it's very disrespectful and rude to assume that you know what someone else knows or would know," I said, louder this time, and when she looked up I could see that she knew then what I was referring to.  She looked from me to the younger sacker and said, "I'm sorry; I don't know why I said that."  "Oh, that's ok," the guy said, with as much genuineness as I'd ever heard in a voice before.

And with that, I was left wonder as I paid for the groceries and rolled the cart towards my car in the parking lot: Was the younger sacker offended by what the checker had said? Was she really sorry?  Did she realize that what she had said to him was wrong?  Was the older guy just going to stand there and do nothing?  I guess it didn't matter, but in any case I was glad this time that I'd stood up for somebody - far from a badass move, but better than nothing, I guess.

                                               Not so much, I guess ...

Monday, March 11, 2013

Lucid Dreaming

I've recently started sleeping to the sound of a white-noise program called Brain Waves, which is available as an iPhone/iPad app.

The program is supposed to influence one's state of mind according to the setting selected by the user by playing sounds that are perceived by the brain in such a way that normal brain waves that occur in various mental states are simulated to promote those states in the listener.

The setting I've been using is called Lucid Dreaming.  (You can probably see where I'm going with this.)  Since starting to use this program, I have had lots of dreams, many not really that interesting - but also a few about my dad.

Last night I dreamed that he and I were running together along a country road, counting telephone poles that we passed as we ran, and at some point my dad said, "I guess you can just go along thinking about how many more poles you have to pass before you get to the finish, or you can stop counting and enjoy the scenery instead."  The rest of the dream ended up being pretty monotonous,  with just the two of us running together in silence enjoying the run, but I woke up thinking about what he'd said to me in the dream and the application of those words to my life these days: rushing from deadline to deadline, working to get past one event to the next, thinking mostly about how I can pass through the things that bring me stress or that make me focus more on my grief.  The point is clear: I can choose to continue doing things that way, or I can choose to focus on the good and enjoy each day along the way.

                Good run, Dad; thanks //

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.