Cancer Myths - and Grief and Anger

I remember studying about the stages of grief when I was in college over two decades ago – and I remember reading almost incessantly about grief just after my dad died three years ago.  There is so much that I didn’t know about grief or grieving before I was thrust into it myself; even while I was reading the words written by the “experts” and professionals in the field, I realized that what had been put down on those pages was just the tip of the iceberg, understated and addressed only in general terms.

Some people think the information that’s out there about the five stages of grief is baseless.  Others seem to think that the stages exist but that the grief process isn’t nearly as clear-cut or as linear as they suggest.  I remember the grief counselor that led the grief support group I attended showing a picture of a graphic representation of the grief process: in that rendition, it looked more like a tornado, spiraling and circling back and forth, which seemed much more accurate to me. 

For me, anger and sadness are two of the emotions associated with grief that keep resurfacing the most often. Sadness, mainly because I miss my dad so much that my heart hurts, and anger, for that same reason and so many other reasons too.  

I’ve written many times about my feelings of anger associated with my dad’s cancer diagnosis and death.  I’ve always thought that I had a long fuse – slow to anger, fairly quick to try to put out the fire whenever possible.  But in the me that I am now, I’m not sure that’s the case – or if it ever will be again.  There are certain things now that launch me into white-hot fury in the blink of an eye, sometimes for reasons that I can’t identify, explain, or understand.  Seeing information like this is one of those things:

“Big Hospital Finally Telling the Truth About Cancer,Johns Hopkins”

I’ve seen this and similar bullshit information posted on Facebook and other sites on the Internet at an increasing rate lately.  It isn’t those who re-post or share the info who make me so angry; it’s the idiots people who write the articles, posing as authorities on a subject about which they obviously enjoy spewing shit like the septic tank hose coming out of an RV of frat boys after a weekend at a music festival fabricating and embellishing for reasons that are lost on me. 

I'm pretty sure he said this in about 400 B.C. and that he didn't mean it literally, because he also said this:

For the record, Johns Hopkins did not publish or endorse the article in the link above, and neither did any other medical institution or research body.  The assholes authors have apparently hooked many readers by weaving some true information in with the idiotic crap exaggerations and falsehoods – and it doesn’t hurt their efforts that the bottom line is that we as a society want to believe that we have control over something as horrible as cancer and death.  As is stated on the Johns Hopkins website, “the gist of this [unscientifically based article full of misinformation]… is that cancer therapies of surgery, chemotherapy, and radiation therapy do not work against the disease and people should instead choose a variety of dietary strategies.”

OBVIOUSLY it’s probably a better idea for health reasons to eat a balanced diet and to exercise than it is to not do those things.  OBVIOUSLY there are cases in which traditional standards of care are not effective against cancer and in which sometimes a supplemental or alternative treatment is advisable when more research-based interventions have failed.  OBVIOUSLY it makes sense to adopt habits that boost one’s immune system.  However … cancer isn’t caused by nutritional deficiencies, nor can it be “corrected” (even just that terminology makes me mad) or avoided by taking supplements, breathing deeply, exercising, or eating foods like blueberries.  Surgery does not cause cancer to spread – and spreading that kind of information could absolutely be harmful if people believe it. 

I remember being told by more than one person (who was well-meaning, I GUESS) while my dad was undergoing treatment for brain cancer that we should keep him from ingesting any sugar because “cancer feeds on sugar.” 

REALLY?  Is that all it would have taken to save him?  ("Ever heard of the Krebs cycle, idiot?" is what I wanted to say in response.  Somehow I held back - but maybe I shouldn't have.)

Of all the ridiculous bullshit fiction out there about causes/treatments/cures for cancer, probably the one that offends me the most is this one: “Cancer is a disease of the mind, body, and spirit."  Some of the most spiritually fulfilled, healthy living, intelligent people I’ve ever known have been diagnosed with cancer.  Both before and after their diagnoses, these people did not have diseased minds or spirits - and it's beyond nonsensical to imply otherwise.

Perhaps worse than the false hope this misinformation seems to seek to provide is the implication that the power to avoid or cure all types of cancers is within each of us, which is an absolute untruth.  I remember the guilt and the pain in my dad's eyes when he asked if he had done something to cause himself to get cancer, and it almost kills me.  A person who is diagnosed with cancer does not need to be made to feel guilty - or contaminated or in need of spiritual "correction" - on top of everything else they are having to cope with.  

I only wish that diet and "spirit" alone could prevent or cure cancer.  If that were true, I wouldn't know what I know today about grief, because my dad would still be here on this earth, happy and healthy.

If you come across one of the articles on the Internet perpetuating misinformation about cancer, I urge you to post a rebuttal, even if it’s just a link to one of these scientifically-based websites:

The Cancer Update is a Hoax (Johns Hopkins)

Don't Believe the Hype: 10 Persistent Cancer Myths Debunked

Let's Beat Cancer Sooner - New Treatment Info

My Take On "Standardized Dress" in Schools

I have a friend whose daughter has hot pink hair.  The daughter, a recent high school graduate, is a very talented artist and and will be attending an elite college of art on scholarship this fall.  This is just one of countless examples of the fact that success, in any form, does not correlate with conformity.

I think that everyone needs at least one way to express themselves; without an outlet, it's easy to have anger, sadness, and craziness build up inside us. 

The point of both of these things is this: I am completely opposed to what is now being termed as "standardized dress" in schools.  Uniforms.  Strict dress codes.  Not only do I think that mandating what students wear to school is a waste of time, but I also think there are aspects of a uniform dress policy that can be detrimental to the futures of our children.

I work in the field of special education, and I witness on a daily basis how individuals with special needs and/or differences have to cope with everyday skills and tasks.  Many individuals struggle with motor skills and other things that affect their ability to perform activities of daily living such as dressing; often they or their parents resort to using compensatory strategies such as having the children wear elastic-waist pants, velcro shoes, and shirts with no buttons.  It goes without saying that these children already have to contend with countless barriers and to work extra-hard to be included in many activities about which most of us don't give a second thought.  Advocates of standardized dress policies often say that they will include a loop-hole in their rules that allow students with special needs to be exempt from their directive, but to me it seems that this will only serve to set apart these individuals and to highlight their disabilities even more.  In fact, I'm not sure that such a dispensation doesn't violate the law and the civil rights of students with disabilities who attend a school with such a policy.

In the "con" column in the dress-code discussion, I can say that I have seen a good bit of instructional time lost due to the need for teaching staff to monitor and discipline students with regards to dress code violations.  It goes without saying that teachers need to be, well, teaching, instead of policing - and defending that police work to students, administrators, and parents - over an issue like clothing.

Another "con" that I can clearly see is the lack of opportunity for students to make choices about their apparel; in the majority of situations in which high school students enter after graduation, they will have options for dress and need practice with parental guidance of how to make those selections in a reasonable manner.

One common argument of the pro-dress code group is that the establishment of such levels the playing field between social cliques, but I am left to wonder how that works if students are still left to choose the brand of the clothing they wear (Ralph Lauren vs. Wal-Mart brand of khakis and polo shirts) and the shoes and accessories worn.  Do the pro-dress code people think kids won't notice who drives what car or lives in what house or goes on what vacations?  Do they really think "popular" can be rubbed out?  If so, I wonder if we should take things a step further and abolish extracurricular activities including sports and Student Council - and the giving of grades and class rankings.  In fact, maybe all children should have their hair cut and dyed to look just alike - and plastic surgery on their faces and bodies so that they are all just cookie-cutter versions of the same person.

Another commonly used argument in the "pro" column is that having students wear a uniform serves to keep them safe, as it allows school staff to easily identify an outsider or an intruder on the school grounds.  To that I simply say: as if our enemies are always from the outside - and as if an outsider can't obtain a uniform so that he or she blends right in amongst the student body, while those students are under the supervision of an incautious staff of school employees who have been lulled into a false sense of security.  

I have heard it said that a uniform policy helps students to focus by "cutting down on sexual tension" that may be present in settings without dress code practice.  But we all know girls who have modified a uniform in some way so as to express their individuality - and their sexuality, and honestly I have seen school girls in their school-approved plaid skirts with more skin showing than I would ever allow for a child walking out of my house.

Here's another bit of the battle cry of pro-uniform warriors: A standardized dress policy increases student test scores.  I have yet to see a valid study that shows any truth to this statement.  I would hypothesize that students who have their creativity (and their spirit, in my opinion) trampled impeded would tend to enjoy coming to school and learning less - and would therefore learn less and score lower on tests.  (I'm intentionally leaving out the whole discussion about whether or not the results on standardized tests show actual learning/knowledge/capacity for success here.)  I will go so far as to say that my take on the function of an educational system is to teach students the value of learning, to encourage in them the desire to become lifelong learners, and to give them the tools that will allow them to do so - and none of those things are tied to how they dress.

The weakest point of defense used by dress code advocates, in my opinion, is that having students wear a prescribed wardrobe every day saves time, energy, and/or money.  Again, I haven't seen any true evidence that speaks to this point.  I would think that the initial outlay of money in purchasing the required ensemble would be fairly significant, even if it is purchased at Wal-Mart or Target and even if a family only buys a couple of outfits and launders those frequently.  I have spoken to many parents of children whose schools have uniform mandates, and all of them say their kids have separate wardrobes for after-school/weekend wear; I am not great at math, but I don't see how having two wardrobes (one which may require dry cleaning or ironing, as an added consideration) saves time, energy, or money.

Added to the point above is my concern about the growing trend of what I call "deferred parenting;" by this I mean the increasing expectation of many parents that someone other than themselves will fulfill what was once a basic part of parenting, things like sex ed, driver's ed, religion, safety rules, city-wide curfews - and, yes, dress codes.  I think all of these issues are things that are to be handled within family units.  I am not under the expectation that school officials or anyone else set rules for how my children dress (nor am I willing to let someone else make that ruling) - nor how they believe, act, eat, or anything else, particularly in the case of issues like clothing that have nothing at all to do with the safety of my children or anyone else.

When I say that I oppose schools' having a dress code, I don't mean that I think kids should be allowed to wear (or, in some cases, not to wear) whatever they choose.  I don't think the wearing of vulgar, overly skin-baring, unsafe, or obviously distracting apparel works to anyone's benefit in an educational setting.  What I am against is a requirement that all students (oh, except those with disabilities ... ) dress alike, especially when such an edict is delivered without sufficient evidence that doing so is of benefit to the students and is necessary for productivity to occur.  The world of education is very focused on research and evidence in the principles and strategies we are using, and yet a mandate that is presented to our children on a daily basis is allowed to be put into place without basis.  From my perspective, at the very least there needs to be a two-sided discussion about the true pros and cons of such an adjudication, before the guidelines are made and handed down in a "take this medicine; it's for your own good" type of ruling.

I Think The Myth Is A Myth

I spent a lot of time on the road during the ten weeks that my dad was sick, driving between my house and my parents' house and between my house and the hospital or the rehab center.  During much of the time, I listened to talk shows on radio stations like "NYU Docs."  Early one morning when I was on my way back home after having spent the night with my dad in the rehab center, I happened upon a talk show on the topic of the emotional aspects associated with aging.  The conversation broached the subject of terminal illness, and, before I really realized what I was doing, I had called in to the show and was on the air.  

"Stephanie from Tennessee is interested in finding out how to help her father who has recently been diagnosed with brain cancer," the host said as a way of introduction, and somehow I found myself on the air telling the short version of my dad's illness and asking for advice on how to address the emotional issues that were coming along with the changes and the challenges he was experiencing.  Right away, the host started talking about how we should be helping my dad to identify the legacy that he would be leaving behind.  As I listened to her talk, I felt a burning sensation in my gut for which I could not immediately identify the source; as the host made a few more statements and then closed the conversation, though, it hit me: she thought I was asking how to help him cope with his impending death.  I wanted to call back to tell her that my question was aimed at helping him have the best life he could, not the best death, but at that point I was crying so hard I knew my words would not be able to be understood.  I wasn't nearly ready to go to the depths of that subject yet, not for even a second, not on any level.  

Several days later I thought back to the words of the radio show host and thought that maybe I should remind my dad about some of the important things that he had done in his life so far - and also talk to him about his goals for the future related to accomplishment.  We'd had lots of conversations since he'd gotten sick about things he wanted to do (his Revised Bucket List), but maybe it was a good idea to broach the subject of what he felt he needed to get done, in whatever time he had left.

Looking back, that seems kind of ridiculous; knowing my dad as I did, I should have known that he would see that type of thinking as way too philosophical.  He was much more of the "just do it" mentality than the "talk about it/plan it out" type.  And he would probably never have been done; he would never have allowed himself to run out of items on his "to-do" list.  I can not at all picture him kicked back, thinking, "Well, I've done all that needs to be done in life; I'm just going to relax and do nothing for the rest of the time I have."  There would always have been one more challenge that he would have assigned to himself; that's just who he was.

The thing that made me remember back to that radio show and the conversations and thoughts that followed was an article that I read this week called The Myth of Finding Your Purpose.  I was expecting the article, written by a woman who had gone through cancer treatment, to be thought-provoking, and it was - just not in the way that I expected.

"Your purpose has nothing to do with what you do," the author says, and she goes on to explain that she thinks one's life purpose "is about discovering and nurturing who you truly are, to know and to love yourself at the deepest level and to guide yourself back home when you lose your way."  Reading these words, I feel that same burning sensation in my gut that I felt from the response of the talk show host on my interstate drive that day nearly three years ago. This time I can identify the source of that burning easily, though: it's anger, annoyance, and aggravation.  It's a fervent desire to dispute what she is saying, because I feel to the depth of my being that she is wrong.  She is wrong.

The purpose of life is connection; it's doing good, in whatever way and on whatever level works for each person.  It's erring on the side of kindness; it's experiencing gratitude; and it's doing what we can to leave the world a little better place when it's our time to go on ahead.  

The point she makes about the danger of only being able to feel worthy based on the feedback from others isn't new: that's called codependence.  Reading back through her article makes me want to get out my red pen and write in my own comments and corrections: for example, when she says, "When our purpose is external, we may never find it. If we tie our purpose or meaning to our vocation, goal or an activity, we're more than likely setting ourselves up for suffering down the line," I want to draw a little caret symbol in between the words "is" and "external" in the first sentence and insert the word "only," and I want to do the same thing in between the words "tie" and "our" in the second sentence and insert the words "all of."  While I'm at it, I'd like to do the same thing just before the word "goal" and squeeze in the words "or to the achievement of a specific" so that the declaration becomes "When our purpose is [only] external, we may never find it. If we tie [all of] our purpose or meaning to our vocation, [or to the achievement of a specific] goal or an activity, we're more than likely setting ourselves up for suffering down the line."  My point is this: despite the fact that people are going to disappoint us, that there will be times when we will feel that our efforts have gone unrecognized, and that sometimes we won't be able to do what we set out to do, in my opinion we need to do our best to, well, do our best to leave a positive mark - yes, an external one, because when we're gone, that's all that will be left of us.

Reading the rest of the article really only exasperates me even more.  To me, the platitudinal (not sure that's a real word, but if not it should be) bullet points about mindfulness of one's self, releasing all shame, and elevating one's own energy sound empty, or made-up, or both.  "To remember your holiness and treat yourself accordingly ... "  REALLY??  If I were buying what she's selling, I'd spend the rest of my days sipping a cold drink on a sunny beach and nothing more.  I'd be full of inter-connectness with myself, all right, but that's about it.

And to her last point: "What if your purpose is to bear witness to your suffering?"  As my dad would sometimes say in a Scooby Do voice, "HUH??" 

CLICK HERE FOR THE SOUND EFFECT I'M TALKING ABOUT!

Unlike the author of this article, I don't think that suffering is "essential;" I think it's most likely unavoidable, but those things aren't the same.  As I've said before, my family didn't need my dad to have to suffer in order to appreciate our lives or to love each other fiercely; we already had that going.  I'm not disputing her point that a person who feels fulfilled and loved is much more likely to be in a position to give back to others, but I just can't agree that a person's purpose is "about finding and nurturing yourself ... not an external ... accomplishment ... even if that ... is the most important discovery of all time."  I don't like the way she refers to some of the people she's met ("brilliant and effective activists," at that) as "messes;" my god, aren't we all in some way or another??  

As anyone who has read pretty much any of this blog or talked to me for any amount of time about perspective probably knows, I don't dispute the fact that inner peace is an important goal, one that can often be reached through having a certain perspective and by making choices about how our circumstances are viewed; I just don't think it's the most important goal in life, and I certainly don't think it's my only true life purpose.

For more food for thought, here's a video of a presentation by a speaker I think is very insightful and interesting:

Dr. Brené Brown at TEDxHouston

What I've Learned About Mothering

Sometimes people say that what doesn't kill you makes you stronger; I have to say, though, that that's a sentiment with which I cannot agree.

I don't feel stronger as a result of the challenges I have encountered, but I do feel changed - and I recognize that I have learned some things from those experiences.  Much of what I've assimilated is on the pages of this blog, and I suspect there is even more to come, from grief and perspective and just life in general.  Many of those things, I am realizing, can be valuable, useful lessons, serving to make me more solicitous, more introspective, and more appreciative of what I have - all of which are easily applied to perhaps the most challenging thing in my life: mothering.

From the road I've traveled, I've learned that the life I have won't last forever; it will change in many ways, some over time and some quickly, some for the better and some tragically, and that because of that I need to work hard to appreciate and remember each day.  

I've learned that it's easy to take it all for granted - and sometimes to wish it away.  I've learned that at some point there is an end to the sleepless nights, the piles of laundry, the hectic mornings filled with things like looking for a missing shoe and packing lunches and kisses goodbye, the nerve-wrecking parent-teacher conferences, the disarray of toys and books scattered everywhere, the lazy summer mornings that stretch into afternoons, the shopping for what I hoped was the perfect birthday or Christmas gift - the Tickle Me Elmo or the Jessie Cowgirl doll or the Furby that I stood in long lines to buy, ready to elbow my way to the front of the aisle to get my child what I thought her childhood wouldn't be complete without.

What I have loved most of all was seeing the trust and happiness in my children's faces, hearing their infectious giggles, feeling their hand in mine, and recognizing things in them that they had learned from me.  Little by little, those days of not being able to shower or go into the bathroom by myself have transformed into closed bedroom doors and teenaged eye rolls of embarrassment that only a parent can still interpret as love, and somewhere along the way it hit me that it's impossible to go back and do one single minute over; I can't take back words said in anger or exhaustion, and I can't rewind the time from even one day to allow myself to better remember or to better react.  All I can do is hope that what I've made up on my own and what I've figured out with the help of those who have advised me or in some way mothered me has been right, or at least right enough, and then try to do my best with what comes as time marches forward, as we go through more proofreading, conflicts with friends and teachers and roommates, texting, phone conversations, choices of class schedules and fashion purchases and even more important things, being sure to celebrate the victories - both big and small, and just trying to keep up with everything.

These days I'm amazed when I think about how I used to think that mothering a baby was so easily definable as the hard part; it's really all the hard part, especially, as I now know, letting go as they make their own decisions, watching them stretch their wings, realizing that they are their own people, swiftly moving towards adulthood and independence, despite the feelings of joy and relief I get when they occasionally come to me for help.

When I look at the hundreds of family photos from over the years, I remember and I cherish the special moments captured on film - the birthday parties, the school programs, the first days of school, the Christmases and the Easters.  But the moments that I treasure the most when I think back are those that no one thought to capture on film, the everyday moments, those from days that I think were accurately and brilliantly labeled along the way as perfectly ordinary.

I wouldn't trade them for dollers or barbies either!

Memories and Exit Ramps

Traveling along the highway of life with a luggage rack loaded with grief, it often seems there are endless reasons and opportunities for taking an exit ramp, as situations and conversations bring forth memories from previous experiences related to pain and loss.  I try to keep my eyes focused only on the space illuminated by the headlights directly in front of me, but sometimes things on the side of the road or off in the distance catch my eye, and looking at and even following those sightings cannot be avoided. There are lots of things along the way that I didn't think I was going to have to face - some of which I hadn't even be aware before I'd traveled this very road - and, once I was and once I did, that we didn't think I was nearly strong enough to traverse. The triggers that force me to exit for pit stops can come from varying sources - reading about or hearing about someone else with a similar story, being asked for advice related to my own struggle, or even just watching others about whom I care go through a trial like my family has since the time when my dad got sick.

Interestingly, I think, at some of those exits are emotions that are strangely unlike those I felt while I was beginning my own journey down this rough part of the road, in this construction zone of sorts.  I remember the feelings of powerlessness, sadness, confusion, and anger from during that time, but, looking at it at this point through my "things may appear smaller than actual size" rearview mirror, especially if I am able to offer anything at all to someone else from this vantage point, makes me feel strong and useful, ... a Silver Lining I suppose, one that I hope translates into a benefit for someone other than just myself. 

Over the past couple of weeks, I have been slowed in the right-hand lane as I've watched my friend and her family bring her father to hospice care on Friday two weeks ago and then say goodbye to him on the following Wednesday, the exact time frame that my family had with my dad.  I remember how in my family's situation there was so much to do, an overwhelming amount of things in fact, and then there was nothing.  I know all too well the pain and the helplessness and the feelings of such utter loss and despair that they were feeling as they prepared for the funeral, and I remember how I thought things couldn't get any harder but then how in many ways it seemed like they did after I went home after the memorial service and found my job and other responsibilities waiting for me.  After my dad's illness and his death, it felt like the emptiness, the loneliness, and all the other emotions were something with which I didn't think I could cope or even survive, but somehow I found a way, as I know my friend and others in her family will too.

In addition to having the perspective from inside the rawness of the grief, I now have somewhat of an idea of what it felt like for those around me in those early days of peregrination; it feels like running in place or maybe like being on a scavenger hunt of sorts.  There is so little that can be done to ease the pain of those who have been forced to enter onto this highway; the best I can try to do is just to ease off the gas pedal in my own vehicle to let them merge into my lane, to give them a nod of acknowledgement, to let them know that they are not alone.

"There is a sacredness in tears" ~ Washington Irving

Shifting Perspective in Grief

An article ran today in the Huffington Post's Healthy Living section that may be of interest to anyone who is grieving or even who knows someone else who is suffering from grief:

Griever's Gold: Cherished Memories

The advice given in this piece is reiterative of some of what I've written about in this blog, especially the way the author launches into her list by saying, "The following five techniques can help a griever shift perspective."

The insight about the way people who are grieving consistently indicate that they would not trade away memories of their loved one in exchange for having the pain of their loss erased is interesting, I think, a different kind of spin on the idea that, no matter how dire or tragic one's situation seems, it's always a wise perspective to realize that things could be worse.

I also like the way she talks about shift and how it tends to occur in grief over time; it's really quite incredible that way comfort seeps into our lives to help (not to heal, I don't think) with the rawness of the pain thrust upon us when we lose a loved one.

The third item on the author's list, "Share stories with other people," reminds me of the quote that affected me so much when I saw it hanging on the wall of the grief counseling center where I went not long after my dad's death: 

Every grief needs a thousand tellings.

Although this may not be true for everyone or in every situation, I have found the "telling" to be helpful in my own grief process.

And finally, the fifth item, "Give thanks for the gift of this person in your life," which is my favorite on her list because it is totally dependent on one's perspective: instead of feeling only sorrow and anger for the loss of a loved one, one can choose to be grateful and happy for having had him to love at all - and to have experienced the impact of that person AND to have the honor of carrying him forward.

Every time I see this portrait of my dad standing in the redwood forest, I think of the word "IMPACT."

Ashley Davis Bush, who wrote the article for the Huffington Post, is the author of a book about grief that I highly recommend: Transcending Loss - Understanding the Lifelong Impact of Grief and How to Make it Meaningful.

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.