Room for Improvement

There are several things that have stuck with me from during the time that my dad was sick, things that I perceive as mistakes and missteps that were made in the care and treatment of my dad by others during his illness.

One of the main ones comes from what was done - or rather, what wasn't done - by his oncologist in the last couple of weeks of my dad's life.  

I sometimes read a blog called People I Want To Punch in the Throat.  It's usually entertaining and sometimes even thought-provoking.  Every time I look at the title of it, though, I am tempted to make up a list of my own of people whom I wouldn't mind punching.  Towards the top of that list would go the name of my dad's former oncologist.  

I recently read an article about the subject of doctors who desert patients who are in the end-stages of their disease.  This article made me think again about my dad's oncologist, whom, as I've said in the past, we really liked in the beginning.  So much so that our fondness for and our trust in him, along with the urgency of procuring treatment for the cancer which we understood from Day One to be very aggressive and the logistical challenges in getting Dad in to see other doctors, resulted in our not consulting with other oncologists in the area.  It was a one-and-done scenario.  Our second opinion came from the nationally recognized team of neuro-oncologists at Duke which stemmed from a referral from Dad's hometown oncologist.  Since my dad's death, I've wondered so many times whether I should have done something else to make it possible for other oncologists in the city where my parents lived to give their opinion on my dad's case - but that's fodder for discussion for another time.

We thought we were right in choosing the guy we chose to provide medical care for my dad.  What's really messed up is that, even in a critical situation like my dad's that should have been recognized and treated as such every step of the way, the inconsistent availability of even the nurse in the practice when we had questions or concerns, the slow call-backs, the wait-your-turn kind of attitude that was so clearly conveyed to us throughout the first eight weeks of Dad's illness was something we felt we just had to take.  Never did I question the service or the care being provided by anyone at the oncology group, even when I realized that they could have done some things better - more efficiently, more compassionately, and with more effort to help my dad.  I just took whatever they were giving out - even though it definitely affected my dad's quality of life.  My family and I were struggling more than I can even begin to explain with caring for my dad and dealing with the series of blows we were being dealt, and I guess I didn't have it in me to buck the system.  Still, though, from this vantage point, neither the way my dad was treated nor my reaction to the quality of the service provided to my dad sits right with me.  

Things were going ok as far as I could tell with our interactions with the oncologist, though, until a few days into my dad's second hospitalization.  As much of a warrior as I can be sometimes when people I love need my help, for some reason I didn't see how wrong it was for Dad's doctor to take several days off work for Christmas and then again a week later, as my dad was entering hospice, for New Year's.  I get that the man wanted to spend some quality time over the holidays with his family - but DAMMIT didn't he see that my family wanted some quality time too?  I have thought long and hard about it, but I still cannot understand how the guy just punched out for 85 hours (yep, I counted) TWICE less than a week apart, not even CALLING to check in on us at all.  I guess I thought that was ok - I didn't say anything about it then - but my thinking wasn't right then.  Now I know that it wasn't ok at all.

I understand that, as the article referenced above points out, sometimes an oncologist distances himself from a patient who is in the end stages of disease to protect himself emotionally. There is no doubt the job of an oncologist is likely to be depressing at times ... but that's what they have signed up for.  I consider a patient's relationship with his oncologist to be worth sticking out through the good times and the bad; I don't think there is any valid justification for an oncologist to let himself off the case (and off the hook) just because the treatment isn't working.  As Dr. Moynihan states in the article, “No physician should ever say there’s nothing more I can do. There’s always something more we can do for the patient — if only to be there and listen to their stories and deal with their pain and suffering.”

And to the point made in the article by Dr. Meier of Mount Sinai: Yes, it is failing a patient who has been under the care of a doctor when that doctor chooses to no longer be involved with the care of the patient at the end, especially when, as in the case with my dad, the oncologist plainly promises that he will continue to be involved and will call in a few days to check in and then doesn't.   

To be clear, I am not alleging any malpractice or a breach in the medical care provided to my dad by the oncologist or his practice; I am, however, saying that there was definite room for improvement, and the fact of the matter is that my dad and my family were hurt in other ways by the practices of and the choices made by the oncologist.

The oncologist in the article, who has written his own account of the difficulties of treating a dying patient, said he received no training at all in medical school about "how to interact with a patient" who had reached the end of oncological treatment. I believe this to be the case in most med school programs, and I think it's outrageous.  Here's what I know and what I think all medical people should know: some of the most impactful care that a physician or other health care professional can give to a patient and his family sometimes comes from something other than medicine.


I think I'm going to write a letter to my dad's former oncologist.  It obviously won't change what has happened, but maybe it will impact the way he treats other patients and their families in the future.

What I Have Come To Believe - Part 3: Fighting Cliches'

A follow-up to "What I Have Come to Believe - Part 1" and "Part 2: A Quest for Patterns and Control":

Fighting Cliches'

The words we use to talk about cancer can influence how we think about the disease - and how we think about the people who have been touched by it.  Those who survive are often called "winners" and are said to be "victorious." Those who have not survived their cancer are called "angels" and are said to be "in a better place."  Whenever I hear those descriptive terms used in that context, though, it makes me wonder if it's being implied that the opposite is true when the story has had a different ending, never a good thing in my book for a process like being diagnosed and treated for cancer, the outcome of which is frequently tied to many different variables that are often very much out of one's control.  

People talk about fighting cancer ... but the term "fighting" implies that there are winners and losers, just as surrendering sounds like giving up.   Certainly it isn't being implied that those unlucky enough to die after being diagnosed with a more aggressive type of cancer or an unfortunate side-effect like infection are losers who have given up.  

My dad was tough; he challenged himself on a daily basis in the physical realm though countless miles of running and biking on the road and grueling workouts, and he worked his whole life to better himself in any way that he could.  At no point in his life was he a loser or a quitter, and he sure as hell never surrendered, even though he was not able to survive the cancer that took his life.  From Day One of his diagnosis, he said he was ready to go back to work, and he continued to say that up until a few days before he died.  That is the opposite of surrendering, if you ask me.  

Advice that I hear being given out a lot in reference to a person who is dealing with serious illness or another extreme trial in life is "Stay strong."  I'm not even sure what that means; don't cry ... don't refuse treatment ... don't die???  And the phrase that is used a lot with intent to encourage a person with cancer - "Never, Ever Give Up", or "NEGU," as it is sometimes abbreviated - makes me wonder if those using that slogan have considered that doing so implies giving up has occurred when one cannot survive despite everyone's best efforts.  When treatment has failed and the disease is taking over, the pressure from hearing cliches like "NEGU" must be almost as unbearable as the disease can be.

Instead of "Never, Ever Give Up," what cancer and grief have taught me is to "Never say never."  More than anything else in my life, the experiences I have had since my dad got sick have shown me that there is simply no way to understand some things without having gone through them.  Lots of things that I thought I knew have fallen by the wayside over the past 2.5 years; now I either have knowledge of a different set of facts - or a different perspective - or just the understanding that there are many things I don't know at this point.

Maybe it's ok to use the term fighting when we're talking about cancer, as long as there is an awareness of the fact that sometimes FIGHTING can be doing something other than getting an aggressive treatment. Treatment and all the things that go along with it are an individual decision, one that can be made exponentially harder because of the time factor, plus the shock, entering into end-stage decisions. I think a lot of people with aggressive cancers opt to try an aggressive treatment as they attempt to figure out what their goals are (their Revised Bucket Lists) - it's like that is the Default when we are faced with the initial decision, and then, if that proves unsuccessful or unsatisfactory, they go to a more traditional treatment or to less harsh remedies or even no treatment at all.  Fighting can be seen as doing any number of things - or sometimes by doing nothing at all, depending on the situation and on one's perspective.

With an aggressive cancer like GBM, the survival statistics are horrible to look at, but people tend to hang onto the knowledge that nothing is for sure; believing that a loved one will beat the odds is not unreasonable, and in many cases Hope is one of the few things that can be controlled. Those dealing with aggressive cancer may consider treatments that have less severe side effects than chemo; they may have an "if-then" list or just an idea of "if" this happens, "then" another option will be considered or pursued.  I know all too well that when the treatment options and their pros and cons have all been laid out, what to do can be a tough, tough, thing to hammer out, but here's the bottom line: sometimes saving a life is not the same thing as extending it. 

From "http://ozbraintumour.info/"

So Much For No Sequestration

I didn't know what the word "sequestration" meant until recently; in case you don't know, it's a term that refers to the making of general, broad-sweeping cuts in government spending due to budget shortfall.  

During the final 2012 Presidential debate, Obama was asked about the budget sequester, and he said, "It will not happen."

Unfortunately, though, it is happening.  Funding for categories of things in the budget are being cut and/or put on hold indefinitely, including Head Start education programs, food inspection, and medical research.  Instead of looking at items in the budget individually to see where cuts can be made without causing long-term, wide-spread harm, with a sequestration, entire categories are being stricken from the budget.  To me, making cuts in this way seems haphazard, short-sighted, and scary.  Maybe careless, lazy, and desperate too.  Actually, there is a one-word descriptor to describe the "plan" that was used by columnist Robert McCartney in an article today in the Washington Post that I think is spot-on:  Dumb.  

               CLICK HERE TO READ THE ARTICLE

Some of the areas in which these crazy cuts are projected to be made seem like a gamble; maybe, just maybe, things will turn out ok despite the loss of funding.  One area, though, in which cutting support in such an extreme fashion is literally a matter of life and death is medical research.  As the article above says, $1.6 billion is slated to be cut from the budget of the National Institutes of Health, which is already underfunded.  "NIH grants pay for most of the basic research in universities and laboratories across the country, [which] has led to practically every major U.S. medical breakthrough since World War II," McCartney reports.  

I read a lot about research in the areas of cancer and other diseases, and lately more and more often I've been seeing information about how we are so close to figuring out a cure for many of them.  Not just a treatment - a cure!  Obviously, without funding, this research will be put on hold or even shut down, and that swings the making of these cuts over into the category of being downright immoral, in my opinion.  

I wonder if the members of Congress and the President actually recognize what will happen; I wonder if they have thought about the implications of the cessation of medical research, either in broad terms or in a personal sense.  I doubt any of them have lived their lives without being touched in some way by cancer; maybe they should sit and talk for awhile to someone they know who is fighting or who has fought it, or maybe they should look at a photo of someone they've known personally who has lost their life to the disease, just to be sure they realize what they are doing with such over-zealous use of their red pens.

I realize it's challenging to figure out where spending cuts should occur when there is a budget deficit, but I'm pretty sure nobody has ever told the members of Congress or the President that their jobs would be carefree or easy.  There are difficult decisions ahead for them to make, for sure, but trying to solve the problems by simply indiscriminately slashing entire categories is just plain - and here's one more word to describe the whole thing - cowardly - and they should be ashamed.

Childhood Cancer - How We Can Help

Did you know that, despite that fact that over 13,500 children will be diagnosed with cancer and about 2,500 kids in the U.S. alone will die from this disease this year, only about 4% percent of the annual budget of the taxpayer-funded National Cancer Institute (NCI) is dedicated to childhood cancer?  

Hearing that makes we want to do something about it.  All cancers are devastating; childhood cancers are the worst in that the smallest, most vulnerable amongst us are affected, not just by the disease but by the ravages of the often brutal treatment.  Obviously the children who have been diagnosed with cancer who have not survived have had a great deal stolen from them, as have their families.  But here's another point to consider:  even children with cancer who do survive are being robbed of those months and years of their childhood and are often left with secondary effects of the cancers and/or the treatments that they had to endure to make it to adulthood.

Through reading about cancer in general and then about childhood cancer specifically, I found out about a campaign called The Truth 365, which is an organized effort to educate the public and generate action to help fight childhood cancer through film and social media.  Through the group behind this campaign, individuals like you and me are able to DO SOMETHING to help, through taking just a few minutes of our time.  It isn't a telethon or a fundraiser; it's an awareness campaign, and it's something that has never been done before in this way.

If you are interested in helping in the effort to protect children from this terrible disease, post a link to this blog entry on your social media accounts like Facebook and Twitter and share it with people you know. Then take some time (about an hour, but well worth it) to watch the powerful documentary film produced for The Truth 365 to find out some simple things that you can do to help battle this terrible beast:

The organizers of this group are trying to raise awareness to increase funding for research and treatment of childhood cancers, not just so that more children who are diagnosed with cancer live but also so that those who do survive are not left with a lifetime of detrimental side effects of treatment.  They want people to understand that the statistics that we hear - that up to 75-80% of children who are diagnosed with cancer survive - paint a picture that is not all together accurate.  That statistic, for example, is only based on a five year survival rate, and many of the children who make it to that point do not go on to survive longer term.  They want everyone to be aware that the increase in survival rates that we hear about in kids with cancer over the past few decades have mostly come from these children being given greater and stronger amounts of drugs that were developed for use in adults and that very often no one knows exactly what the effects of these treatments in children will be.  They want us to see that doctors and other health care professionals who are trained to treat these very sick kids and to research the treatments that can save them are having to spend time fighting for funding instead.  They want us to know that with no money and with just a few minutes of our time, we can do something to help in this cause.

The film will enlighten you to the facts that we all need to know, whether we personally know a child who has cancer or not.  Through the film and through viewing the group's website, you will find out about action steps that need to be taken to further increase awareness and support and to secure the funding needed.  You will learn in viewing the film is that each of our Congressmen have been asked to sign a pledge which affirms his or her support for children with cancer.  

A listing of those U.S. Representatives and Senators who have signed the pledge has been posted here -  

http://www.thetruth365.org/pledge/  

by state, so that we can see who still needs to be encouraged to sign this pledge.  For example, in Tennessee, two members of Congress have yet to commit: 

They are asking us to contact members of Congress who have not signed the pledge to ask them to do so.  Most of the contact info you need is right there on the site; if you live in Tennessee, you can click here for Bob Corker's contact info and here to contact Chuck Fleischmann to let them know the importance of their commitment to this issue.

When you get to the website, bookmark and check back as often as possible to find out about the latest iniative of the group  and how you can help, often with just the click of a mouse button.  

There are lots of causes and organizations that ask for donations of money and items, especially during this time of year, but this one is unique in that all they are asking for is a few minutes of our time.  The greatest reflection on us as a society and in my opinion as individuals is the way we treat those who are less fortunate than we, and I can't think of an easier way to do that than to participate in this effort.

Anger, Of Course!

Imagine, if you will, that you were just going about your business one day, living your life, and suddenly you became seriously ill or injured.  Now imagine that in the process you became disoriented and started having problems remembering recent events, and then you were told that you wouldn't be able to return to work or do the things in life that you loved doing, maybe for a short period of time, maybe forever.  In fact, you were told that you couldn't have your cell phone or your computer, you were confined to your hospital bed like a prisoner, AND you were in pain that never really let up at all.  

And then: you were told you had a terrible disease, one with a very grim prognosis.

Do you think you might just be more than a little angry in this scenario?

While my dad was sick - from the day he was first admitted to the hospital, through the time of the surgery and the not-so-great stay in rehab, and finally to the time of his hospitalization when he was so weak that he literally couldn't lift his head off the pillow - we only saw a few brief bursts of anger from him.  It's unbelievable, really, given all that was going on with him, the little time he spent expressing this emotion, probably about three hours' worth total over the course of the ten weeks.  

If you know anything about traumatic brain injuries and neuroanatomy, you know that based on the very area of Dad's brain where the tumor was and the multiple traumas that he suffered, coupled with the massive dose of steroids he was on and the utter lack of sleep he got during that time, plus (let's not forget to mention) the (can't think of how else to phrase this that will convey the same meaning) SHITTY HAND he had been dealt in being diagnosed with brain cancer, Anger should have been present every moment of every day for him.  I will venture to speculate, though, that several things played a part in the fact that it wasn't: first and foremost, Dad's perspective, the usual (pre-illness) evenness of his emotions, and his internal happiness meter, which was almost always in the good-to-great range.  Next on the list was probably the fact that during that time one or more close family member was always right with him, which, as comforting as I like the think that was for him, likely resulted in an extreme effort to be positive and to hold it together by HIM so that he wouldn't risk upsetting or disappointing us, in his eyes.  Another factor probably came from Grief; I think lots of time Grief gets a bad wrap, kind of like peer pressure does for kids in many cases.  Sometimes, though, also like peer pressure, Grief can be useful - and for Dad as it was for the rest of my family at the time, the Shock and the Denial it brought about allowed us to Hope and even just to function in what was an almost impossible situation.  For Dad, the understanding of the horror of what was going on that he was able to grasp was likely tempered by the Denial that covered both him and the rest of us. Finally, I think ironically it is possible that the brain injury itself, with the effect it had on his short-term memory, might have allowed Dad to be short-sighted enough regarding his limitations and most especially his prognosis that he was able to dodge much of the Anger that logically should have been there.

The few episodes of Anger that I saw from him during those weeks seemed to stem from frustration, usually aimed himself for not being about to do basic things as effortlessly as he should have been able to, very understandable given the circumstances.  A couple of times, I witnessed him getting angry with another family member, and a few times he snapped at me, mostly from impatience when he was in pain. All were, in the eyes of those of us who were taking care of him, completely justified, and, from my perspective, the only reason they are worth mentioning at all is because it's such a wonder they didn't happen much more often.

One of the biggest bouts of anger he had occurred during a P.T. session on one of the last days he was in rehab.  I had just gotten to the rehab hospital and was rounding the corner in the hallway on my way to the gym, and, when I heard Dad's voice, I stopped short of where he could see me so I could see how he was doing in therapy without distracting him.  As I peeked around the corner, I saw Dad lying on his back on the mat in the Therapy Room, and I heard the Physical Therapist telling him to do ten leg lifts with each leg.  Obviously just wanting to get the whole thing over with, he hurriedly and haphazardly lifted one of his legs a few times and then said he was ready to go back to his room. The P.T. brusquely told him that he wasn't done, to which he responded, "Oh, HELL YES I AM.  A couple of weeks ago, I could run a marathon and not even be tired; I don't want to work on stupid leg raises."  My aunt, who was sitting in on the session, tried to ply him first by playing on his competitive spirit ("Come on, Bill!  Show them what you're made of!" she cheered.) and then, when that didn't work, she tried joking with him ("And a one, and a two, fly like a butterfly, sting like a bee," she chanted, after she'd laid down beside him on the mat and as she enthusiastically did the leg lifts he was supposed to be doing.).  Neither tactic was effective; in fact, he was getting angrier by the minute, and he finally shut things down with a burst of expletives that I won't repeat here.  Suffice to say, he was angry, he'd had all he could take for the day, and he got his point across in the best way he knew how in that moment.

I'm sure it's difficult not to equate sickness and weakness with a feeling of failure.  I can't even start to imagine having to go from doing what Dad was doing to not being able to do what he couldn't, literally overnight.  Thinking about that while he was in the midst of the fight made me realize that beating cancer isn't just about getting rid of those cancer cells.  It's about fighting to stay on top of that win-lose mentality, it's about finding a way to accept just enough and to forge ahead in a quest for just enough, and it's about charging full-speed ahead while somehow at the same time finding a way to stop and smell the roses and to create and hoard those memories along the way.  

From my family's experience when Dad was sick, I became acquainted with the harsh reality of how tough cancer treatment can be on one's body and, just as importantly, on one's spirit.  The very process of having to make what ends up being literally life-or-death decisions based on the Cliff-note version of information given while dealing with the illness,  the loss, and the reality of things is exhausting, to put it mildly.  It feels like it must feel to stand at the bottom of Mt. Everest without any experience and without a trustworthy guide or a map of any sort.

On the day that Dad went to the radiation oncologist for the second time, I had to work and so I didn't go with Mom to take him that day, which ended up being the day that he had to have the face mask made to hold his head in place for the radiation treatments that we thought were coming up.  Afterwards, when I asked him how it went, he told me it was no big deal.  I've since learned, though, that getting the mask made is not no big deal (To read a first-hand account of the process, click  HERE), and I cannot imagine how scary and confusing it must have been for him.  

And that, along with many other things that happened along the way while my dad was sick, makes me feel the burn of the anger that I don't think will ever fade.  

"I know I can't be with you; I do what I have to do.  I have the sense to recognize that I don't know how to let you go."

Coming Into View

I’ve been thinking a lot lately about how I’ve been hearing about so many cases of cancer, and, more specifically, the same kind of brain cancer that my dad had, since his diagnosis. Before my dad was diagnosed with Glioblastoma Multiforme (or "GBM") in October of 2010, I’d never heard of this type of brain cancer.

Since Dad’s diagnosis, though, it seems like I can’t avoid hearing about people that have the same thing.  It reminds me of the way that after I’ve gotten a new car I keep seeing the same kind of car on the road, even though I’ve never noticed that kind of car before then.  As with the car spottings, I'm not sure if there actually has been an increase around me or if I'm just more attuned to noticing it because of my personal situation/experience.

I’ve been wondering if this same thing is commonly experienced by others who have also been left behind when a loved one dies.  Maybe it just happens with a terminal illness, maybe just with cancer, or maybe only in cases of relatively rare cancers.  Or maybe it’s just something my family is noticing.  In any case, though, I find it so interesting (and at the same time so disturbing) that I started wondering if there is a name for this phenomenon.

I was thinking that if it didn’t and if I found out that it was commonly experienced as part of the grief process, maybe I would start a trend of calling it something like Sensitization Syndrome or Frequency Factor.  I’ve since learned, though, that there is already a general term for something very similar: The Baader-Meinhof Phenomenon.  

Since Dad’s diagnosis, I've counted about a dozen GBM cases that I’ve heard about in people that I know personally or in people who are personally known by someone else I know well.  In one case, it’s a person I know professionally, and, when she was first diagnosed around the time my dad died, my coworkers didn’t want me to find out what her exact diagnosis was.  They talked around the subject and at times seemed visibly uncomfortable when I inquired about how the woman was doing.  I think they thought it would make me think about my dad and that it would make me sad, when actually (of course) I was already in a perpetual state of both of those things, and when actually I had developed a sort of obsession with assimilating as much information as possible and talking about GBM.  

Some of the people who have also been handed down a GBM diagnosis have had different treatments and/or different outcomes than my dad.  Not long ago, I asked a friend of mine about one of these people - another woman I know professionally, who was treated with the Gamma Knife and is currently in remission and is doing well over a year later - and my friend commented that it must be hard for me to hear about another GBM patient who had a better outcome than my dad.  I didn't even have to think for one second before I could respond:  as much as may seem like there would be some jealousy on some level in this, there really isn't.  Anybody who get GBM, or any type of cancer, or any sickness or disease, deserves to get better.  They all deserve more time.  I am glad for anyone whose treatment works, and I wish them the best in their recovery.  I just wish we had gotten that chance in my dad's case too.  I can't wait for the day that all forms of cancer - the aggressive ones like GBM included - are considered not just treatable but curable, or, even better, when enough is understood about genetics and causal factors for there to be an eradication of this awful disease.

Sometimes when I hear about other cases of people who have GBM, I am torn about whether or not to impart the knowledge I was forced to come upon the hard way – should I share what I know, our experiences, my resources with others who are having to get this terrible news?  I’m not sure if doing so would be nice or cruel.  I certainly don’t want to imply that all outcomes are like ours, but, because ours wasn’t long-term survival or a cure as we had hoped (and believed), does that make what we learned along the way not friendly or potentially invaluable information to share?  I sometimes think about whether or not I wish I had known what we came to know  - if I say yes, it’s because I think we would’ve either skipped the treatment, even and probably most especially the surgery and rehab, and then put forth our best effort to take Dad to the beach or somewhere peaceful, or we would’ve tried harder to look around at other treatment options.  Realistically, though, I know that might not have been possible, or – if we had taken him where he said he wanted to go – he would’ve discovered that he couldn’t experience or enjoy things as we would have thought.  Maybe it was selfish to decide for him to go for treatment when we were being told the prognosis was so very bleak even with intervention; believe me, I think about that even more often than The Baader-Meinhof Phenomenon.  But I know we HAD to try whatever we could in hopes (and with the belief) that it would make a difference and to let Dad know that we would do WHATEVER IT TOOK to try to save him.  And so, when all the cards are on the table, when the curtain has fallen, when the tears and the anger get put on hold long enough for some clarity to this answer to come into view in my rear view mirror, do I wish I had known then what we found out just over two months after the diagnosis?  Probably not.

On Guard!

 One thing that I’ve learned since Dad went on ahead is that there are lots of similarities across the board in people who are grieving.  And, although every person, every family, and every situation is unique, every death is a personal catastrophe for those who loved the one who died.  Every person who dies leaves a gaping hole in the lives of those left behind.  And, though we all deal with things in different ways, there are some patterns, emotions, and reactions that are commonly seen when a loss has been experienced.

I’ve read a lot about these similarities, part of my quest for information about grief, a.k.a. “Is this normal or am I losing my mind?” (I still haven’t figured out why there isn’t a “What to Expect” book for grief like there is for pregnancy and childhood!)  I’ve learned that grief can result in physical pain as well as emotional, that it can affect appetite and sleep patterns/energy levels, and that it can interfere with concentration and decision-making abilities. 


But one thing I haven’t heard much about in relation to grief is something clinically called Nosophobia, an irrational fear of contracting a disease or illness.  I’ve heard of this type of thing being common in medical students and others in this type of training; in fact, sometimes this is referred to as Medical Students’ Disease.  It should also be called Survivors' Disease; it leaves those of us left behind waiting for the other shoe to drop.  To me, it feels like constantly being "On guard," waiting for something to go wrong, feeling a sense of some danger that is lurking just around the corner from wherever I am.

In the case of grief, I think this fear is related to several things – a feeling of vulnerability, having experienced the worst kind of being out-of-control during the illness/death of our loved one, seeing first-hand that tragedy and serious illness can come out of nowhere, and the physical pain and other physical issues that sometimes occur with grief like insomnia and weight loss.  I don’t think it’s irrational.  For me, it’s like a nagging headache or a splinter in my foot that I just can’t quite get rid of, no matter what I do. 

Besides my dad, something else that I have lost this year is a sense of security, my faith that everything will truly be ok, that with love and effort always come good results.  Now I feel like I should be preparing for disaster or devastation, because I know first-hand that it happens.


If a person who does everything right can get so sick so fast, that means anyone can.  That precarious balance of things can be upset and forever altered in the blink of an eye.  If we did everything just right to get Dad better and he didn’t, that means either we didn’t do it right or anything could happen.  If he could be terminally ill without a single sign, anyone could. With that realization, I am fluctuating between thoughts of living a completely reckless, carefree life  (Base jumping, anyone?  Hell YES I will have dessert at every meal every day and hell NO I’m not going to worry about saving a dime, ever!)  and holing up to try to avoid anything bad. 


Although I do know even something as extreme as never leaving my house won’t prevent the worst from happening.  Or even delay it.  It’s like that movie, Final Destination.  We can do whatever the hell we think is right to keep ourselves healthy, but when it’s our time, boom!  And that’s terrifying.  Not why me or why my dad but WHY??   If my dad’s illness and death were part of some Plan, why did that Plan include so much suffering?  Couldn’t he (we) at least have skipped that part?  I’ve heard it said that we are not given more than we are strong enough to handle – does that mean if I were a weaker person, Dad would still be here?  (Please note, this question is rhetorical – this is me grieving OUT LOUD, not asking for input.)

We take so many things for granted -- as we should, to go on with our lives. We don't ever stop to wonder, standing at the kitchen door, if the hug or kiss goodbye, before each of us leave to go about our day, will be the last.  How could we ask such questions and get through the day?  And really, that’s what most of life is – the little things, the moments, the shared tears and laughter, our perspective and appreciation (or lack thereof) that all add up to memories and relationships and impact.

Anyone who has suffered a loss would give almost anything to go back to experience those everyday kinds of things again, before their world and their reality were interrupted by loss and all those feelings that come along with it.  I think about the last time I saw my dad before he was diagnosed, the last email he sent to me, the last text, the last voice mail he left me, the last birthday card he signed.  Obviously I did not know those would be the last of anything at the time.  So how do I keep from tormenting myself by thinking that any of these things from anyone else I know and love will be the last?  I don’t know, but I do know that I have to figure it out, to re-engage, to push forward, to wash the dishes and make the bed, again and again, for as long as I am so lucky to be able to do it.  Because I guess the only guarantee, the only thing that is for sure as far as I can tell, is that choosing to make the best of all we are fortunate enough to have in this moment will make things seem brighter, will enrich our lives and those of others, and will help us to strengthen us, so that we can make it through the hard times when we are called to battle.  The gratitude that we can choose to see in everyday events, routine jobs, and simple moments can transform common days into thanksgivings and ordinary opportunities into blessings, as long as we keep our perspective.


-‎"Enjoy the little things, for one day you may look back and realize they were the big things."
 - Robert Brault

When It's Time

About two years ago, my family’s almost 17 year-old dog Clifford passed away after a lengthy illness, and, at the time, his deterioration was the hardest thing I'd ever had to watch up close.

Cliff gave us so much and in many ways got our family started when he joined my husband and me while we were expecting our first child. He taught us many lessons, including and ending with three of the most important:  through him we started to learn about how to care for and comfort to the end; he showed us that love transcends all boundaries, including the difficulties of a terrible disease and even the end of life;  and, finally, he taught us that sometimes the only thing left to do for one so very sick is to them let go. 

Clifford struggled through many months of decline, losing his playfulness, his independence, his dignity, and finally, the light in his eyes.  He had grown up with our children, and, after all he had given to us over the  years, it was my duty to hold his head in my lap and tell him that his job here on Earth was done, that he had done what he’d come to do, and that it was ok if he was ready to go on ahead of us.  As I watched him take one last big breath, a sigh of relief really, I knew in my heart it was his time to go but that one day I would see him again, carrying a shoe in his mouth and running around among the clouds.