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 3: Doctors and Death

Continued from No Answers - Part 2: Informed Consent

There are some questions that are probably commonly asked by people who are left behind after a person with a terminal illness dies, questions to which I realize there are likely to be no answers but that keep coming back to me nonetheless.  Some of these are centered around patient care; as a health care worker myself, I fully understand the difficulties of staffing shortages, paperwork demands, insurance issues, and the like.  But I also think that there are unfortunately some health care workers, including some doctors, who aren't really focused on the quality of their care.  

We came across some of those in my dad's case, and I will always remember them, just like I will never forget those who provided my dad and my family with outstanding care and compassion.  I just wonder if any of them will remember my dad.

I think there should be some kind of required continuing ed for  physicians, and maybe for nurses and some other health care workers too - especially those who frequently treat patients with catastrophic diagnoses - a training that could help them to realize (or to remind them) that patients are PEOPLE, not cases or numbers or statistics. I view much of what happened  in my dad's care as being a symptom of what's wrong with our health care system (and maybe even with our society) today: so often we just accept and often even continue to put on a pedestal the physicians who don't or can't take the time to stay on top of patient care as we FIGHT for treatment, for attention, for proper care. The utter lack of case management and the absolute lack of follow-through and follow-up are perhaps what disturb me the most about what went on during Dad's illness.

Here's something else I wonder about: how much - and what kind of - training is given to physicians, in particular to oncologists - about helping patients and their families deal with end-of-life decisions, and about coping with such matters themselves?  A thought that keeps coming back to me again and again is this: I know physicians take an oath to "do no harm," and yet in some cases those same doctors continue to prescribe aggressive treatments and fail to present hospice - or other types of palliative care - as an option, presumably based on the fact that those doctors assume the patients want to fight to the end.  How much of a doctor's own perspective is imposed on that of his patients?  Even the most well-meaning physician could feasibly become so emotionally attached to a patient that he forms an opinion based more than just medical knowledge about what choices that person should make, and that could easily impact the type or the amount of information he presents - or the way that he presents it - to the patient and the patient's family.

And so the question becomes - where does the "treatment" end and the "harm" begin?  When does the good (or the possibility of good) stop outweighing the bad, the awful side-effects and the risks??  It becomes a judgement call, one that can easily be made with emotion interlaced with the medical knowledge.  In fact, isn't that what we want in a doctor: someone who cares about us on a personal level??  And yet that very situation could affect our care by playing into how our doctor handles things on down the road.

I think this is particularly tricky in the case of an oncologist.  Cancer doctors are in the business of providing Hope to their patients.  Many of them spend more time per appointment with each patient than doctors in other specialty areas do, and they usually see their patients more often than other doctors do too.  As well, the subjects that are discussed within the walls of the rooms in the oncologist's office are very often much more emotional than the usual chit-chat that goes on in the offices of other doctors.  All of this leads to the establishment of more of a connection between an oncologist and his patients - again, not at all a bad thing, but something that must enter into the recommendations given about treatment, including end-of-life treatment issues.

In a situation with a terminal diagnosis, I know all too well how very hard to figure out the balance between hope/pushing forward and acceptance. The oncologists we dealt were only recommending aggressive treatment; looking back, I have to wonder if it was because they were full of hope/faith or if that was just their focus and their training. I know that some oncologists are better about that than what our experience was and that some try their best to keep a patient's overall well-being in mind rather than just trying to have a great case to write up in their medical journals. But still, when the patient is you or your loved one, you have to do two things: you have to have Hope, and you have to have faith that your oncologist is looking out for your best interests (and that he/she knows what those interests are).  What we found is that in a situation like ours Hope is linked to goals that peel off in layers like an onion - hope for a cure, hope for treatment that gives more quality time, home for comfort, hope for him to be pain-free and hope for peace.

As I said in the last post about informed consent, the options just weren't presented to us or to Dad; the oncologist originally told us that we would be taking Dad home from the hospital just a few days after brain surgery, but, at the urging of the hospital physical therapist who had seen Dad a total of one time, the doctor ordered that Dad go to rehab, where essentially Dad's care was managed for the most part by the Rehab Director, whom we later realized knew little to nothing about GBM and its treatment.  We saw the reasoning behind Dad's participation in a short-term rehab program; the way we looked at the treatment as opposed to a "just going to a beach" scenario was to picture my dad a little further down the road.  We hoped - and we believed - that Dad would improve which would make the rehab stay well worth the effort, and we knew that Dad would want to go "all in" until he couldn't.

At one point in looking back at what we decided on for my dad, I said that if I had to do it again I wouldn't have had him go to three weeks of rehab (because he didn't get better functionally during that time), but then my mom pointed out that if he hadn't gone, he wouldn't have  even had the chance to have gotten functionally better and we would probably always think it was because we didn't have him go. In other words, we would have linked the lack of quality of his life to our decision for him not to go to rehab, even though we learned through having him go that there wasn't a link or a possibility for him to gain more independence, based on his individual set of circumstances.

Another obstacle for physicians in caring for terminally-ill cancer patients has to do with the rules of hospice: in order to qualify for hospice, a cancer patient not only has to have a life expectancy of less than six months but also must agree to forego any further chemo treatments of a "curative" nature.  When you think about it, that isn't really fair, especially considering that patients with other terminal conditions aren't forced to stop their medications to enter into a hospice program.  I can see how it could be difficult for an oncologist to switch over from thinking "I am going to help this person beat the odds" to a mindset of comfort-care only.  I can see where an oncologist would keep wanting to offer more - a Plan B, and then a Plan C, and so on, offering Hope, if not for a cure then for improvement.  I can see where the concept of quality of life (what even is that for most terminally ill patients?) can be confusing.  Once the cancer has set in for good, there often isn't a whole lot of quality, especially if brutal treatments like some chemos are continued, and so it become a judgement call, which must be made based on the experience of the physician and, of course, on human emotion.

Consider this:  when a person goes to the doctor for a more run-of-the-mill illness, like a sinus infection or or a sprained ankle, the doctor doesn't give that person a choice as to whether or not he should be treated or as to what the treatment will be.  As long as there is a clear course of action in treating the condition, the doctor orders the treatment.  

In rarer cancers, and certainly in cancers that are being considered terminal, that changes.  The oncologist presents the patient and/or the patient's family with options and gives them the power (and the burden) to make a choice.  Sometimes the patient even finds out about treatment ideas on his own and presents those to the physician.  Once everything is on the table, though, inevitably the question that is asked of the oncologist is this: What would you do if this were you or your loved one?  And that's where the personal opinion and the emotion and the potentially-clouded judgement come in.  It's what we ask for at that point, because we have no idea what else to do.  We need to feel that we can trust someone, and we hope that that person can offer us some hope, in some form. Bargaining is in full play at that point in the disease process: if the patient can't be cured, if he or she cannot be granted more time, then of course we want them to be afforded comfort.  

About that question, the "what would you do" that every oncologist must get asked on a daily basis, I am here to tell you that no one can ever truly know what he or she would do in a given situation.  Even an oncologist who has dealt with countless sad situations can't accurately say how he would handle things if he or someone he loved were diagnosed with a terminal illness.  Each person, each situation, each relationship is different, and so none of us can predict with any degree of accuracy. (Click HERE to read the story of what happened in my dad's case, when he was so sick and not getting any better in the hospital, when I asked the oncologist what he would do if it were his father who was lying there in the bed, begging to be taken home.)

We can suppose, though, and we can ask for guidance, with the hope that given his experience the oncologist will have more knowledge about such matters than we do at that point.

That's what we wanted to happen with my dad; we expected the oncologist to bring up the subject of comfort care with us as an option when it started to look like the course of treatment that we had chosen might need to be reconsidered.  However, what actually occurred is that we guided the oncologist towards that thought in the process; he didn't guide us.  I have to say that it would have made a little more sense for the guy to avoid the subject of hospice if he had been involved in my dad's care for a long time and/or if he knew my dad on a personal level, but neither of those things were true.  In actuality, from my perspective, his not seeing the whole picture when we needed him to the most was because of one or two things - because he was too busy to be involved enough, or because he just wanted my dad to beat the odds so he could improve his own statistics.  

There it is.  I realize my perspective here is likely tainted with anger stemming from grief, but that's the honest truth of how I think things went in the end with the oncologist.  We were only presented with a minimum number of options in the beginning for Dad, and we weren't presented with any at the end, until we put forth the idea of hospice and comfort care.  I expected to be guided through that delicate process, and I'm not sure I'll ever recover from the shock that we weren't.

No Answers - Part 2: Informed Consent

Continued from No Answers - Part 1: The Oncologist

Besides the unresolved issues on my mind from when my dad
was sick that relate to the oncologist on Dad's case, another
thing that concerns me is the way that informed consent was 
handled when Dad was in the hospital.

Informed consent is the process by which a fully informed patient participates in making decisions about his own health care. It originates from the legal and ethical right the patient has to direct what happens to his body and from the ethical duty of the physician to involve the patient in the management of the patient's own health care through educating him about his condition and any proposed treatments as well as reasonable alternatives and the reasoning behind the physician's recommendation.  It also includes informing the patient of the risks and benefits of the suggested course of action and any other possible decisions after which the patient can use that information to either accept or decline the treatment.  

In cases when the patient is deemed unable to participate in this process, another person can be appointed to serve as proxy through a medical power of attorney or other legal process.  

When it became clear that my dad was not consistently oriented (i.e. he was confused about certain things) upon hospital admission, informed consent fell to my mom on his behalf.  According to the definition of informed consent, this meant that she was to be educated about Dad's condition and of the options for treatment and the advantages and disadvantages of each.  This is basic Medical Ethics 101, a process of which any physician - and certainly any surgeon - should be extremely aware.

This is where my question comes in:  Why was that process not followed?  

At admission, a neurosurgeon was assigned to my dad's case, and right away he started saying that a specific type of surgery called "debulking" needed to occur just as soon as Dad was stabilized seizure-wise.  We were never given any choice of neurosurgeon, and no alternatives to this procedure were ever presented to us.

Prior to the surgery, my mom, serving as Dad's medical power of attorney, was directed to sign the consent form that listed all the risks, but really she didn't have a choice in the matter - what was she going to do: not give the consent when we'd been told he needed the surgery to save his life??  We were 100% given the impression that the neurosurgeon on the case was the only option we had for whatever reason and that, without that surgery at that time, he would die, right then.

Later I learned that was not necessarily true.  The surgery 

could possibly have been delayed or maybe even avoided 

with no change in prognosis.  [When we met with the team of top neuro-oncologists at Duke later, we learned that the aggressive growth pattern of GBM meant that it doubled in size every three weeks and that, because of the time required for recovery after surgery before treatment could be started, since the surgery the remaining portion of the tumor had grown to almost half of what the size of the tumor was originally.  In fact, the Duke doctors said they felt there had been "very little surgical benefit" for Dad.] 

I know now that there were other surgical and non-surgical options that should have at least been discussed with us, if only to explain why they might not have been recommended by that particular neurosurgeon in my dad's case.  Because they weren't even mentioned, though, I don't know if they were viable options or not.  At that point, though, we didn't know there were any other choices and we weren't told any differently, and so we just went with what was presented to us as the only course of action.  And so I am left to wonder - why didn't the surgeon even consider trying other techniques that are frequently discussed as a treatment for brain cancer, those that are showing evidence as giving a better surgical and prognostic outcome - things like intraoperative stimulation mapping and Gamma Knife radiation?  Why didn't he bring up the option of delaying surgery to investigate the use of gliadel wafers (which are implanted to deliver medicine right at the tumor site) or to look at the possibility of taking a sample of the tumor for use either for testing to see if the cells were chemo-resistant or for an dendritic cell tumor vaccine?  

Back then, though, we didn't even know what questions to ask, or even that we should be asking questions.  We didn't think about getting a second opinion or doing a background check of any kind on the neurosurgeon, at least partially because we were told that time was of the essence.  I think we assumed that particular neurosurgeon was the best at that hospital or at least that he was the neurosurgeon with the first opening in his surgical schedule.  It seems crazy to me now when I think that I never asked how many of that type of surgery that neurosurgeon had done or how many patients with that same diagnosis were treated in that hospital per year.  [I later asked a nurse on the oncology floor how often they saw GBM patients there, and she said once or twice a year.]  I remember all too well that we were in such a state of shock and panic and so frantic to try to take care of and to protect Dad that we didn't have time to research things.  We just trusted the advice we were given and forged ahead.

These days, I have a note in my cell phone that lists things I want to remember if I am ever in a similar situation (Is that doomsday thinking or preparedness??  I'm not sure.).  It includes these statements:

*When a doctor (or other medical staff member) makes a recommendation, ask what else they considered or could have considered and WHY they came to the conclusion that they should recommend that specific thing.
*When making a decision as to whom (or to where) to turn for care, directly ask WHAT MAKES YOU DIFFERENT FROM OTHER DOCTORS (or what sets this facility or service apart?)? 
*ALWAYS ask what that person's (or that facility's) experience with that diagnosis, that surgical procedure, etc. is SPECIFICALLY, termed in frequencies and outcomes.

In my dad's case, though, without a doubt, we did what we knew to do.  The rest just wasn't something a person would know in everyday life.  Was the right choice made?  Yes, based on the options we were given at the time.  What would we have done, if we knew then what we know now??  Of course I will never know, nor would I if we had been presented with all of the possible choices and then given the opportunity to select one.  But at least in the "fully informed" scenario, we would not feel as if there were facts we weren't told or options that weren't considered.  Today, in the midst of my grief, I certainly don't feel that there was any effort at all by the medical team to try to individualize Dad's treatment, and I am left to wonder why we were only given certain information.  Did the medical team actually feel as if it were our responsibility to do the research and then to ask questions about the other possible treatments?  Did they have such as strong opinion about what the best course of action was that they didn't tell us what else could have been done?  Did they think we were somehow incapable of understanding the more complex information about other options?  Did they think we (or Dad) weren't deserving of knowing about those alternatives?  Did they themselves not know what else was available?  Did they lack the training in performing the other techniques?  Chalk that up to the list of things we will never really know.

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.

The Church Pew

I'm taking an online grief class, and part of the focus of the class is to put together a collection of memories and pieces of information about the loved one who went on ahead.  We have been given a list of fill-in-the-blank style questions to help in the information gathering process; the list includes things like favorite color, favorite subject in school, first job, hobbies, and words of wisdom.  Some of it is easy for me to complete, some of it is hard to remember or to narrow down, and some of it I don't know.  

It's the latter that really upsets me; it makes me think about just how sad it is that many of my dad's stories died along with him.  Luckily, my mom and my siblings can fill in some of the information that I don't know, but, when they have exhausted their repertoire, that's all there is.  And that hurts in a way that I didn't know existed before.

When my dad was in the hospital waiting for the surgery that resulted in his being officially diagnosed with cancer, he was very talkative, around the clock.  Some of what he spoke about were things he was worried about, mainly my mom and his mom.  He chatted about what he hoped to be able to do when he got out of the hospital.  He asked about each of his grandchildren and said he could hardly wait to see them again.  In between these conversations, though, he said a few things that were out of the blue and some that were out of context and maybe even out of the realm of what we could understand.  One of those things he said was that he could see his dad, who had passed away years before, and a man whom he said was his "first preacher" from when he was a little boy and whom he said had a last name of Whitehead.  According to my dad, he could see both of these men sitting at the end of a church pew.  He didn't seem to know what they were doing or what else was going on in that scene, but it did seem to leave him a little unsettled.

Fast forward about 7 months later, after my dad and then his mom (my grandmother) both had gone on ahead, and my extended family on my dad's side had gathered for a memorial service for my grandmother in her hometown in Alabama, which is where my dad grew up.  I asked several of the people who had known my dad as a child, including his brother, if they remembered a preacher by the name of Whitehead, and they all said they did not recognize the name.  The story remains a mystery, and the fact that it probably always will bothers me, a lot.  I wish I could hold onto every bit of my dad that ever was, every memory and every fact, even those that I didn't know yet.  I guess there is a kind of grief for the loss of those things that comes along with the grief of the loss of a loved one, too, yet another thing that I wish I didn't have to know.

If You Knew

If you knew that you probably wouldn't be here next week, next month, or next year, would you do things differently?  

Would you slow down and spend more time talking and just hanging out with the ones you love, would you rush around trying to pack in everything you could into the time you had left, or would you jet off to some remote location and sip cool drinks on a sunny beach somewhere?  Would you leave your work behind, choosing to treat each day as a vacation, or would you double-time it in an effort to finish what you'd started, in hopes of clearing your desk?  

I think sometimes people go through life just trying to get through the daily grind, setting a goal each day just to make it to 5:00 and hoping to build up enough vacation days to take some time off a few times a year. It's a easy pattern to get into, for sure.  That wasn't my dad at all, though.  He regularly set goals for lots of things.  He liked quotes that inspired action, like "A goal without a plan is just a wish" and "To accomplish great things, we must not only act, but also dream; not only plan, but also believe" and of course his favorite, "JUST DO IT!"  In essence, he was a roller-coaster guy, not a merry-go-round guy:

              "I like the roller coaster; you get more out of it!"

Through my dad, I learned while growing up to believe that anything was possible through hard work and perseverance.  And, for the most part, I feel like that held true in my life, up until the time he got sick.  

But I have to say that, had he known his days were numbered before that awful day two years ago this month when he was taken to the hospital by ambulance and the trial of our lives began, I don't believe he would have done many things differently.  

For all the questions and the if-then deliberations in my mind from over the last few months of Dad's life, there is one thing of which I am absolutely certain: if life is measured by adventure, my dad had a full one. 

Throughout his life, my dad identified things in himself that he wanted to change and then he made those changes.  In fact, thinking back to one of those things from when I was a teenager makes me smile even today:

About the time I turned 15, my dad told me that he had read somewhere that research had shown that a teenaged girl whose father told her at least once a day that he loved her was much more likely to graduate in the top of her class and to be happy long-term in life.  He said he knew that my sisters and I knew that he loved us but that he wasn't sure of exactly how often he told us out loud that he did, and so, just in case (another favorite expression of his), he was going to set a goal to say it to us every day at least until the time we graduated from high school.  ("I'll still say it to you after that, but you'll be away at college so it may not be quite as often," he said to further explain his plan.)  He didn't go into detail as to how he was going to be sure that he remembered to say it, but I knew him well enough to know that he would have some sort of system.  And sure enough, the next time I got into his car, I saw what it was:  he had placed a sticky note on the dashboard of his car, and on it he had written "Tell the girls I love them." Apparently the system worked, because, as far as I can remember, he told us that every day until we left home and every time he talked to us after that.

The last email I ever got from my dad was about planning for new adventures as he looked ahead to what he was going to do after he had completed the Ironman triathlon in which he was scheduled to compete but didn't get to.  Here's what he wrote in his typical stream-of-consciousness type of email:

From: Bill Bullard <bbullard@hurleyandassociates.com]]]]>

Sent: Wed, September 29, 2010 2:38:15 PM

Subject: Iron man

This will probably jinks it, but my foot is much better. I have 4 training wks to go---   Plan is to do three long runs (app3 hrs), 3 long bikes (80-100 miles and three long swims of about 2 miles each. In between stuff doesn’t matter much, I am told. If I can do these I should be fine, although walking will be part of the Plan which it is for most anyone not really competing. Nice to do around 14 hrs but just to finish is okay. Need to find a tattoo place in Calif to get Ironman logo on my calf. Lee gets one next yrr

Love ur crazy//Dad

told mom this would be the only one. Got to think of a new adventure—but no heights or extreme cold.

Thinking about the way that my dad lived his life, I see clearly that he didn't need a terminal prognosis to define his priorities or his goals.  He never sat it out, he always gave it his all, and he enjoyed every day of his life.  And if adversity is the test by which character is revealed, then I'm proud to say that my dad passed the test with flying colors.

One More Conversation

I recently read about how sometimes people who are going through the grief process think about what it would be like to have one more conversation with their loved one.

Thinking about that is complex for me, because, as far as I knew, my dad didn't think that he wasn’t going to survive his cancer diagnosis, and so the things that I'm guessing typically come up in those one-more-conversation type of exchanges weren't on the table for us to talk about when he was sick.  We didn't talk about end-of-life kinds of things during the ten weeks we had after his diagnosis; honestly, I don't know that any of us could have withstood that type of emotional wrenching, including my dad.  He knew that we loved him, and we knew that he loved us, and I think we thought there was still time to talk about everything else.

Part of me wonders now if we should have been straight up with him about what was going on medically; after all, he was an adult and maybe it was underestimating him or overprotecting him to keep that information from him.  He knew his diagnosis, but he didn't know the prognosis.  The bottom line, though, is that my family and I did what we truly believed was in Dad's best interests at the time, given what we knew and the resources we had.  We didn't LIE to him, but we did skirt around the truth about his prognosis and the severity of his illness on the few occasions he asked us about it, when he said things like "What if the chemo doesn't work?" and then we said things like, "It will, Dad! We just have to get through it."  He asked one of his doctors a few times about the usual prognosis of someone with his same diagnosis, and they told him the truth, but all of us, Dad included, discounted what they said because Dad wasn't "usual" - he was extraordinary.  Towards the end, he asked me a few questions like, "What's it like to die?" and "Do you think it’s cold in heaven?" (he hated to be cold), and I am so very glad that I answered him truthfully then.  Most of the things I said to him though, when I realized how very limited our time together was going to be were part of a one-sided conversation - when he couldn't talk back, and when I'm wasn't sure he heard me.  Looking back, I think it would have been so hard for us to say goodbye to him and then to have him say it back; the pain and sorrow that I see on his face when I picture this scene in my mind are heartbreaking, sending a stream of tears down my face, and that's when the vision is only in my imagination.  I think Dad might have viewed his own farewell message as quitting, and I am glad he was spared that, at least.  

So when I think about what our conversation would be like had he gotten an extra few minutes tacked on at the end of his life, it’s hard for me to picture anything other that what we did talk about when he was so sick.  Given that, I want to respond to the question of what would I say to him now - not as if he is still alive but as though he and I are able to communicate now, with him being wherever he is in the afterlife and with me being here on earth:

Dad,

There are a few things that I want to be sure you know, and if I can be assured that you realize and understand these things it will help me to better deal with my grief:

I miss you so much, every day.  You had such a big impact on my life and on making me into the person I am today, and the things you taught me and the lessons I learned as a result of having you for a dad are carrying forwards, still affecting me every day.  So much bigger than that, though, was your impact on the hundreds of other people you knew and even on the thousands of other people you came into contact with over the course of your life.  What you left all of us with – and all of the people with whom WE will come into contact with in the time to come – is your perspective, your view on kindness, and your joy and gratitude in all kinds of situations.  Because of you, I know that I am lucky, no matter what is happening around me.  Because of you, I know that I can decide to be happy, if I choose.  And because of you, I know that family comes first but that every person is important and that being kind and giving to others is a privilege, not a duty.   I wish you could realize how many people admired and loved you; I think while you were sick that you might have gotten confused on just how many friends you had because we discouraged people from visiting you then because we were so worried about you catching their germs.  I’m sorry that we didn’t find a way for you to see how cherished you were by so many.  Finally, I want you to know that we will be forever grateful to you for the way you fought so hard to hang in there through so much over those last ten weeks, I want you to understand how we are so appreciative of every bit of light you brought to us over the years, and I want you to know that I will think about you and try to make you proud every single day, for the rest of my life.  

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