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 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.

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

The Why of It

Sometimes I can't clearly remember the me that was before my dad got sick, the person who thought all problems could be solved with effort, the person who believed the world pretty much made sense, the person who believed that good came from good.  

Sometimes I still don’t believe that my dad isn’t still here with us, and – here’s the whole truth – when I have those moments of thinking that, I sometimes let myself bask in the glory of that belief for a little while.  It feels like lying on a beach, soaking in the sun, when these moments occur, but then, inevitably, the sun goes behind a cloud or, worse, a thunderstorm appears from out of nowhere, just like Dad’s cancer did.  

Sometimes I think that whole thing about the five stages of grief is inaccurate.  There is such a flooding of emotions, a constant state of flux, and I’m not sure it isn’t essentially stagnant since there doesn’t seem to be an end in sight.  If the stages do exist as stated, I guess I am clinging onto Denial and fighting off Acceptance, almost as vigorously as I clung to Hope as I fought Dad’s cancer.  And the Anger, I am holding onto that too.  I want revenge, I want justice, I want to lash out; I think that would feel good after all that has happened that feels so awful.  Hell, what I really want is to have my dad back, happy and healthy, and I don’t think it’s too much to wish for that to happen, if only in my memories.

Because mostly what I remember these days is the him while he was sick.  I don’t understand why that is!  I had him for over four decades before the time when he had a zipper of a scar on the top of his head and confusion and fear in his eyes.  Why is that the way I am seeing him now, as he was during just ten of the 2194 weeks I had him during my life?  

Dad never asked, “Why me?” when he was sick.  He did wonder why he got brain cancer, but he thought about it in terms of what he had done to cause the cancer; he thought his health was his responsibility.  He wondered aloud if it could have been caused by the chlorine in the pools where he did so much swimming; he said he thought maybe it was somehow from too much running or from having too many bike wrecks.  While he was in rehab, he asked the neuropsychologist if the cancer came from talking on a cell phone too much, and, even though Dad wasn’t one of those people who seems to have his phone permanently connected to the side of his head and even though to date there is no conclusive evidence that there is a link, the guy told him there could be a connection.  Dad asked the doctors at Duke if they knew what could’ve caused it, and the team of neuro-oncologists there who are some of the leaders in the world in the field of brain cancer told him the causes were unknown.  It made me so sad to see him guiltily ask these questions, all framed with self-reproach, and somehow remembering that now fuels my anger even more.  DAMN that he had to wonder and worry and that he still somehow thought he needed to apologize for having gotten brain cancer.  Not right, not fair.  Add that to the list.

Dad wasn’t ever one to over-think or really contemplate the “why” or “why not” of things; before he got sick, he used to joke around about the saying, “It is what it is.”  “Well, what else would it be?” he’d say facetiously.  

But I questioned, and, when I started to realize there would be no answer, I said, “It’s not fair!”  It really isn’t fair, is it?  

And yet, it doesn’t escape me that none of us promised a perfect life nor does it that despite the fact that what we went through was terrible, it could have been worse.  I’m sure most people in a tragic situation want to know why it happened.  I guess it really doesn’t matter, though, because the fact is that it did happen, and things cannot be undone or changed.   If I knew why would it make me less sad; would I miss my dad less?  Maybe I would be less angry, but of course that is pure “grass is greener” thinking.

I know that I am so very lucky to have had my dad in my life for as long as I did, and I still consider him to be an important part of my life and my perspective.  But I struggle all the same, and again and again my thoughts come back to the same rejoinder: “It’s not fair!”

I used to hate it when I was a kid and I heard a grown-up say, “No one ever said life was fair.”  I always wanted to say, No kidding, but how is pointing out that something isn’t fair any different from commenting on the weather?  It is what it is, and no one said it wouldn’t be, but it kind of helps to say it out loud.  

I can’t imagine a scenario where a person would be told he is terminally ill, and think oh, yeah, well, that’s fair.  That’s ridiculous!  I am trying to come to terms with the fairness issue, the anger, and the burning in my gut, and I'm sure it would be easier if I could stop comparing and thinking about what I think should have been.  I know what I have to do, to move on past the Anger, to honor my dad:  change my perspective. His death challenged me and made me acutely aware that our paths are never certain. A traumatic loss challenges our belief system and the core of life's assumptions, and acceptance is a major hurdle when death is traumatic and/or sudden (and I do consider my dad’s to be both). Telling the story is supposed to help make sense out of the senselessness. I’m not sure that goal will ever be accomplished for me, but, just like my dad did, I plan to give it my all and then to focus on feeling lucky for what I have and have had instead of the alternative.

I believe that imagination is stronger than knowledge -

That myth is more potent than history.

I believe that dreams are more powerful than facts -

That hope always triumps over experience -

That laughter is the only cure for grief.

And I believe that love is stronger than death.

 ~ Robert Fulghum

Part 42 – Gearing Up

Continued from Part 41 

When I think back to the last few days of Dad’s hospitalization, I remember so clearly some of what was going on, but other things are a blur or even a blank. I remember sitting by myself in the hospital cafeteria with a turkey sandwich in front of me, but I don’t remember how I got there or how the food got onto my tray.  I remember the tears that I could not stop from falling in a steady stream and both wanting and not wanting to be comforted.  I remember taking a bite of the sandwich and thinking that it tasted like cardboard but eating it anyway, because, like a lot of things going on during that time, it was something that I knew I had to do.  I remember thinking to myself, “You have GOT to hold it together” but not being at all sure that I could.  I remember feeling so desperate and so heavy with the weight of the decisions that my mom, my sisters, and I had to make.  I knew there were things that had been done that couldn’t be undone, and I knew there were actions that had to be taken to make things right for Dad.  I knew that I still wanted to choose Hope, but I realized that, from that time forward, Hope was going to be coming in a different form.

We had another couple of lucky draws from the Nursing Assignment Fairy; Dad’s tag-team nurses this time, Day Shift Dave and Night Shift Jim, were very patient in teaching us about Dad’s medical needs.  Both of them somehow balanced empathetically caring for Dad with providing us with a listening ear and a shoulder to cry on in the hallway.  They seemed to be available whenever we needed them, but we didn’t feel like they were hovering or intruding.  Looking back, I see that, whether it was because they saw up close how very sick Dad was or because they took the time to listen to him and to us, they somehow “got” the seriousness of Dad’s condition and even the rhythm of his illness and of our grief.  

Even with support from Nurses Jim and Dave, though, we continued to scramble to try to meet Dad’s needs, often apparently without success. "It's just too much!” Dad said numerous times, with despair in his voice and with pain in his eyes.  “Please, can’t I just go home?" he pleaded again and again.  It was, in a word, heartbreaking.

The doctors, especially Dad’s oncologist, still appeared to fluctuate between being baffled by the severity of Dad’s continuing medical problems and being blind to it.  Among the team of physicians involved in Dad’s care, no one seemed to really understand his declining status -- they said the tumor was "holding steady" and that his blood counts were “back to normal.”  For whatever reason, not a single one of them really saw Dad struggling to lift his head from the pillow or really heard him when he said, “I hurt so bad!” or “I just want to go home!” 

There is such a dichotomy when someone you love is catastrophically ill; on one hand, you want the medical staff to realize how unique and special your loved one is, but, then again, you also want them to swoop in with the attitude of “This is no big deal - I see this stuff every day!”  Either way, though, you expect them to accurately and efficiently assess what is going on and then to figure out what to do about it.  This absolutely did not occur among the physicians on Dad’s case.  Either they didn’t really see what was happening or they saw it but they didn’t know what to do about it.  By the third day after Dad had been moved from the ICU onto a “regular” floor, we had begun to see that we were going to have to figure things out on our own, and that is a horrible feeling, entering unchartered territory, in a state of shock, without a guide.

Despite the lack of progress in Dad’s condition, the oncologist was gearing up to send us home before New Year’s Day rolled around.  He was all set to take another three-day long weekend starting that Friday, and so on Wednesday he wrote orders for the nursing staff to show us how to check Dad’s blood sugar, how to administer the insulin, and how to flush the PICC-line so that it would remain open for use if needed.  He told us that he had discussed Dad’s case with the neuro-oncologists at Duke and with the local radiation oncologist and that they felt the best plan was to have Dad start radiation and resume the chemo and Avastin one week after he had been discharged from the hospital.  He suggested that we consider having Dad moved to an inpatient rehab facility “for building strength prior to the start of radiation.”  He informed us that Dad would need “to be able to move himself onto the treatment table and to maintain a seated position for several minutes at a time in order to sit for the radiation treatments.”  (That, to me, was like someone telling me to run a five-minute mile; of course I wished I could do it, but, even giving it my all, it just wasn’t going to happen.)  When I expressed my concerns about Dad’s ability to withstand the radiation treatment, both in sitting for the treatment and in avoiding the possible side-effects such as a lowered immune system, the doctor’s response was, “Because he’s had a less than ideal response to the primary treatment, it’s a bit of a long shot that he will qualify for radiation and even more of one that the treatment will help, but I still don’t think it’s a crazy option.”  I asked him if the radiation could result in a functional improvement for Dad, and he said, “We just don’t know.  If the radiation is able to shrink the tumor, there is a small chance that things will improve for awhile.”  None of this was sitting right with me; I felt like not only were we being offered less-than-desirable choices but we were also being told that the odds were slim that any of the things being discussed would help Dad much if at all, if he even qualified to get any of them.  


When the oncologist left Dad’s room, I followed; I caught up with him at the nurses’ station and told him that we were worried about how we would care for Dad at home but that we wanted to take him home.  

“I just don’t see rehab as an option for him right now,” I said.  And then I pushed even further.  “I asked you when you first came on as Dad’s oncologist if you would let us know when the time came for us to call in Hospice.  Do you think that time is now?”  

He looked puzzled, but I kept at it:  “Other than a slight decrease in pain and his fever going down, there really haven’t been any changes in him since we got here over a week ago.  He’s completely dependent on us for everything, he’s miserable, and he wants to go home.”

“I’m not sure,” the oncologist said.

“What would you do if this were your dad?” I asked him.

“I know exactly what I would do,” he responded. “I have medical power of attorney for my dad [who is also an oncologist], and he has told me in no uncertain terms that if he is ever diagnosed with an aggressive cancer, he does not want treatment; he does not want measures to be taken that will prolong things.”

Wow, I thought.  “And so, about hospice?” I persevered.

“I think maybe there may still be some options we should consider.  He could stay in the hospital through the weekend if needed.  Let’s talk again in the morning.”

I said ok, but it wasn’t.  I didn’t understand how he didn’t understand what I was saying or how he didn’t see what seemed so evident.  How could he think that staying in the hospital “through the weekend” would make a difference for Dad, except to depress and frustrate him more?  And how could he have been so quick to give an answer as to what he would decide to do for his own father and not be of the same mind for my dad at this point?  I was baffled and so, so sad; I just didn’t get why he didn’t get it.

After he left the unit, I stood in the hallway outside of Dad’s room crying, and Nurse Dave came over and put his hand on my shoulder.  He said he had heard my conversation with the oncologist.  “He doesn’t see what we see,” he said.  “I know!” I wailed.  “Sometimes that is the case with oncologists,” he said gently. “It’s like their only goal is a cure, and sometimes that just isn’t going to happen.  Sometimes treatment doesn’t work.  Sometimes treatment isn’t what a patient really needs or wants.  Sometimes the oncologists don’t know when to say when.” He paused, and then he added, “You can ask for more information on Hospice without making any kind of commitment.”   As my sobbing subsided, I considered his words carefully.  I knew we needed help and more information before making any kind of decision.  I knew we had to figure something out and that we needed to do it quickly. 

That night, we made a list in the Notebook of possible options, including having him go to rehab again.  (Based on my professional experience, I knew this was not really an option for a patient in such a severely depleted physical condition; based on my personal experience from when Dad was in rehab in November and made NO progress whatsoever, I knew it wasn’t an option we were even going to consider, but, because the doctors said they thought we should think about it, I put it on the list.)  Checking him into an inpatient hospice facility went on the list, as did taking him home with home health or with support from hospice.  Those were the options, as we saw them; none of them were good, and it was quite possible that none of them were even doable if the stars didn’t line up just right and if we didn’t get our ducks in a row first.  For a split second, it seemed like there were gray areas in our what-to-do, some sorting through of the pros and cons that needed to be done for each of the considerations.  But then again, looking at Dad, lying there in the bed, it quickly became abundantly clear:  what we wanted for Dad – what he wanted – was right there in the forefront of our minds, and that was for him to get to go home.  

We were very concerned about our ability to provide the quality of care that he would need in that setting, but we wanted to try to figure it out.  As had been the case during Dad’s treatment, we planned to operate as a team, and, also as we had been doing, we would take each hurdle as it came.  Our focus became finding out what we needed to know and getting set up to care for him at home; we were gearing up both physically and emotionally for what we couldn’t deny lied ahead.

And so the question became - How can we get him home and take care of him?  Looking at our list in the Notebook, the only way we could see it happening was with ongoing support from an outside source, and the only form in which that seemed to be available to us was through hospice.  At first, the decision to go with Hospice seemed like surrendering, but, as we met with representatives from different agencies and learned more about the process and the services, it started feeling more like taking control of the situation for the first time since Dad’s diagnosis. We told ourselves that we were just going to “use” Hospice … and then we could revoke, if things improved as we hoped they would.  The home environment will be therapeutic for Dad, I thought, and then he will start feeling better.  

Early the next morning, my sister and I caught the oncologist in the hallway before he went into Dad’s room.  Before we could even say anything to him, though, he said, “I thought about your dad all night last night, and I realized that what you said yesterday about calling Hospice is the right decision.  I want to talk to your mom and your other sister too, and then, if you all are ready to go ahead, I can write the order for a consultation from different hospice services, and then you can make a decision.”  We stepped inside Dad’s hospital room and saw that, thanks to the pain shot he had gotten an hour before, he was medicated into a sound sleep.  We all sat down around him, and, after further discussion, we said yes, we would like the orders to be written.  The oncologist looked at Mom and said, “I just want to be clear on this: are you ready to sign a DNR [do not resuscitate] order?  That will be required in order to get hospice services.”  No, of course we weren’t “ready,” I thought, but it is what needs to be done.  Mom took a deep breath and said she would sign the order. The way we saw it, Dad deserved to go home, he deserved to feel better, and he deserved a chance to enjoy his family, and if that meant using hospice, or signing a DNR order, or doing anything else, then that’s what we would do.

After the oncologist left, my sister and I talked to Nurse Dave about hospice.  We had seen a flyer for one hospice provider in the waiting room (not the most uplifting thing to see in an oncology-ward waiting room, I must say, but we ended up being glad to have the info), and we were familiar with two other providers in the area – one was the agency already providing hospice care for my dad’s mom, and the other had helped care for my mom’s mom in the end stages of her battle with cancer almost 18 years before.  Dave suggested that we make an appointment with a representative from all three agencies to learn about each one.  “I think you should sit each of the reps down and ask them specifically, ‘What makes your agency the best choice for us?’”  

We took his advice to heart, and we did just what he had suggested.  The intake nurse from the first company gave us lots of information and then, when we asked her the “Dave” question, she said, “We are the only hospice service that has 24-hour crisis care, which is in-home nursing support for critical cases.”  After that, we interviewed the other two agencies, but we knew as soon as those words were spoken that the first company was the one we needed.  

When the oncologist came by that afternoon for his evening rounds, we told him which hospice service we were planning to use.  He said that he had heard excellent reviews about their services and that he would work with their physician to be sure we had whatever we needed to take care of Dad at home.  “I am going off duty for the next three days for the holiday weekend,” he said, “but I will call you at home on Monday to check in.”  He had tears in his eyes, and he seemed genuinely concerned as he turned to leave the room, but, as we came to find out, that would turn out to be the last time any of us saw or heard anything from him, ever.  

And so we met again with the intake nurse from hospice and, with her help, hammered out the details of setting up a delivery to my parents’ house of equipment and supplies first thing in the morning, and then she made an appointment to have Dad transported home by ambulance.  The next morning, my sister Jennifer and I would be at the house to get things set up there, my mom would ride in the ambulance with Dad, and my sister Nancy would drive Mom's car while following the ambulance.  Along with all the necessary medications and medical supplies, we would be getting a hospital bed with a special pressure-relief mattress and a Hoyer lift which could be used to gently lift Dad to move him as needed.  At last, we felt like we had the help that we needed, and the wheels were set in motion.

It felt buoyant to tell Dad that he was definitely going to get to go home.  As soon as the words were out of my mouth, though, he started trying to sit up in his bed as if he thought he needed to get ready to go right that second.  “It will be tomorrow, Dad,” I told him.  “We have to get everything ready first.”


“What’s to get ready?  I can just get in the car and go, and all of my stuff is already at home,” he responded hopefully.  I told him we had to be sure we had the medicine that he needed and that the doctor had said he had to stay in the hospital until the next morning, and he finally accepted that in a deflated kind of way.  He was ready to make big plans, though:  “As soon as I get home, I want to turn on the fire in the fireplace and the space heater so I can finally be warm.  I need to stretch my legs and then I’m going to play with Foster and the dogs and drink a beer, okay?” he said. 


With that, I smiled for the first time in a long time.  “Okay, Dad, that sounds like a great plan,” I told him.

In what came to mirror the way I desperately wanted to shield Dad from the knowledge that he had cancer around the time of his surgery, I pulled out all the stops to avoid having him know that we were signing on with hospice. This seems incredibly short-sighted now, but at the time I wanted the focus to be on living, not dying, even then.  When I talked to Nurse Jim about my plan, he let me tape a sign to the outside of the door to Dad’s room that said, “DO NOT MENTION HOSPICE! PATIENT KNOWS HE IS GOING HOME TOMORROW BUT IS NOT AWARE OF HOSPICE SERVICES.”  We wrote in the Notebook the wording we thought was better for him to hear, if and when the topic of Hospice came up:  This allows us to care for you at home.  We’re going to take care of you. You did a good job and now you get to go home.  And the clencher – You don’t have to worry anymore; you are going home.

To Be Continued Here:  Part 43 - Home At Last