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/"

Not So Much

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

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

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

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

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

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

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

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

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

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

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

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

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

                                               Not so much, I guess ...

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.

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.

Being Present

One thing that I think I got better at during my dad’s illness was being present.  When I think back to when my children were very young and there was a lot of just being there to be done, I don’t see myself as having been good at it; so often when I should have been completely focused on the joy of motherhood, I remember feeling like I needed be taking care of something else – work, household duties, or whatever – instead of basking in the good fortune that had come to me because I was able to spend time with them.  I don’t think I was in the moment often enough back then, and, to be honest, it’s something with which I’ve often found myself struggling in many contexts over the years.

But when I was told of Dad’s diagnosis, even though I didn’t (couldn’t) believe the prognosis, I realized the preciousness of spending time with him, just in case.  When my family was told the grim statistics that were so caustically presented to us, immediately we were all reeling over the extreme vulnerability of the man we loved so much, and maybe even that of life in general.  From the time Dad was initially taken to the hospital by ambulance, in some distinct ways he seemed so different from the man he really was, but in other ways he was, well, just himself.  What Cancer didn’t take from him was his sense of humor, his kindness, his tenacity, his love for his family and friends, and maybe even his belief that things would turn out all right.

Throughout his battle with Cancer, at least some confusion was there for Dad, at times a good bit of it, but his brilliance was still there too.  As much as we wanted to protect him and to have as much time as possible with him, he worked even harder to protect us and to have as much time as possible with us, and I will always remember and respect the grand effort I am certain that took on his part.  

Over the many years that Dad was in peak physical condition, especially when he was marathon-ready, he was thin-statured.  His son-in-laws and some of his friends used to jokingly call him Skeletor and say that he looked like a POW.   (Dad took that as a compliment: “Less weight to carry on my run!” he said enthusiastically.)  But at the end of his life, Cancer actually made him a Prisoner of War – literally overnight, he couldn’t go where he wanted to go or do what he wanted to do.  Hell, he couldn’t even be left alone for one minute for fear that his “I can do it myself” attitude and the impulsiveness and disregard for safety that were handed down by the disease would land him in the floor.  Obviously, nothing and no one had been able to keep him safe from Cancer, and, the way we saw it, we’d be damned if we weren’t going to try our absolute best to keep him safe from everything else.

And that’s where being present became necessary, right from Day 1 of his illness.  That’s also were being present became a privilege for those of us who loved him so much; it was a crash course for me in priorities and in time management.  At first, as I sat with Dad and even while I helped him with the many things with which he needed help, my mind raced ahead and then behind and then ahead again.  If not for the fatigue that became so extreme and so pervasive for my mom, my sisters, and me during the ten weeks we cared for Dad, we would surely have not been able to fall asleep at all for the whirling and racing our minds were doing.  As it was, though, by the time Dad entered rehab just a few days after his brain surgery, being present was all I could do, and, as well, it was all I wanted to do.

Along the way, Dad seemed like he still had plenty of fight left in him, until he didn’t.  The world, in Dad’s eyes before Cancer, was a great place, full of fun things to do and people to interact with, full of adventure and dreams and things to look forward to.  We watched as Cancer and the four walls of the hospital, the rehab center, his house, and then the hospital again changed that over time, though, and as the light and the happiness started to leave his eyes.

People going through the kind of traumatic experience that my family was while Dad was sick are not always the easiest people with whom to interact, we knew that, and we did what we could to follow Dad’s lead and to be appreciative and patient.  Some of the nurses and techs we clicked with, and some of them we tolerated while we counted down the minutes until their shifts were over.  We weren’t ourselves; we were busy being present and taking care of Dad with every bit of intensity that we could muster, 24 hours a day.  Fear and anger and helplessness and sorrow and fatigue changed who we were; I think most of the people we knew were aware of that and realized that our world had been turned upside down and we were just muddling through.  

In the months since Dad went on ahead, I think I have lost a lot of the ability I had gained in being present.  My mind so often flashes back to scenes of Dad struggling or the faces of the people who didn’t help us and didn’t seem to care that we were failing in our efforts to save him.  It’s like a remote control gone haywire with a life of its own that's controlling my thoughts sometimes when I should be controlling them, so that I can pay attention and be present, especially when I am lucky enough to have time to spend with my family and friends; I cannot control those flashes or the distractibility and the emotions that come with them.  I am very appreciative of the times when I can focus, whether it is to concentrate on doing something that needs to be done or to take a breath and feel some positive emotions.  Oddly, sometimes when I catch myself feeling happy, I’m happy that I can be happy in that moment, but, as in a sky without a cloud in sight, it also makes me anxious and sad to know that there is a black cloud that out there that will inevitably come near again at some point in the future.

Being present more consistently has gone back on the list of goals that I have for myself, and I hope to achieve it one day soon so that I can more often bask in the good that is all around me, despite the fact that one of the best people in my life is no longer able to be present to enjoy it with me.

I Try

Dad, on Lookout Mountain

When I read the reports and heard the talk,

The prognosis and the circumstances gray,

An exception, a miracle, a reward for our fight

I thought surely would come our way.

Even as you put so much effort into

Eating, and talking, just holding on,

Even as your body bore the brunt,

The thought of you going seemed so wrong.

You told me once that it’s possible

That tears could run out in supply.

I know now that cannot be true

And that my pillow will never be dry.

And now, so many days, hours, months later,

The knowledge that it happened settles in my brain,

In spite of the confusion, rage, and sorrow,

The devastation and most of all the pain.

If you wonder, if you have a trace of the thought

That any of you may be forgotten or gone

Or your impact lessened by the hastening of your departure,

This is one time I have to tell you you’re wrong.

I miss so much the way we were;

I miss you every minute of every day.

I try to be tough so I’ll make you proud,

But I just don’t know how to be ok.