In Terms of Pain

There’s a weird thing about relativity that goes on after watching a loved one suffer and then die from cancer: pretty much no ailment really seems all that bad.

When I start to think that I don’t feel well, my thoughts immediately go to the look on my dad’s face when he was so sick, the confusion in his eyes when he asked over and over “Why am I not getting better?” and the desperation in his voice when we brought him home from the hospital for the last time and he asked me, “Are you sure we have enough medicine?”  I feel certain that the emotional pain he was in and the stress he felt for so many reasons were worse than the physical pain towards the end; all of it was nothing short of torturous.

So these days when I think about something like pneumonia, I think: not that bad.  A bout of the flu?  You’ll get over it.  A migraine?  Take some medicine and quit your whining.  Throw your back out?  Give it a couple of days and it’ll be like it never happened.  Common cold?  Jesus, get ahold of yourself you freaking wimp.  These are not things I say to other people (not out loud, at least), but I definitely say them to myself, just one more way that my perspective has changed.

I remember both times my dad was in the hospital and the staff seemed to be constantly asking him to rate his pain. Every time he was asked, he was shown a little visual guide; it seemed to annoy him much more than it helped him.  He always did what I came to think of as "white coating" his response (sugar-coating for the white coats); the number that he gave and that was recorded in his medical chart was always lower than it actually seemed to be to those of us who spent a lot of time with him.  Many times Dad was very obviously in pain, grimacing and asking for a cold cloth to be placed on his head, and then when a health care worker walked into the room his demeanor shifted:  "How's it going, Doc?" or "I hope your shift ends soon - it seems like you've been here for days and I know you're tired!" he would say. Truth be told, sometimes it made me angry, not necessarily at him or at the staff member but just in general at the fact that he felt like he needed to pretend to feel better than he was actually feeling.

Several times I thought about following the nurse or whoever had asked him to rate his pain out into the hallway to ask them to put a footnote explanation alongside the number Dad had given, but for some reason I never actually did it.  What they didn't realize besides the fact that Dad tended to "round down" was that his natural pain tolerance was about 100 times that of most other people, the result of decades of enduring grueling athletic workouts.

I know it’s not a contest, and I know that pain is pain and sometimes it just helps to let out a moan or a cuss word in complaint of the discomfort that’s ailing a person.  But, like pretty much everything else in life, pain is linked to perspective.  I WISH I STILL THOUGHT A HANGNAIL or even a raging case of poison ivy was worthy of whining.

The Shift

It always feels strange to have something significant going on in my life that people around me aren’t aware of.  I’m sure that’s true for most people; one common example of this is when it’s a person’s birthday and most of the people with whom he or she crosses paths that day don’t know that it is. Whether it’s something good or bad, oftentimes it seems like the information just isn’t comfortable or appropriate or relevant enough to share.  In many cases, I think it would feel awkward, somehow attention-seeking  or maybe even like bragging, to tell the people around me, and in some cases I don’t really even want them to know for various reasons – but it still feels odd, as if I am driving on a side street or an access road alongside the main highway.

That’s how it feels to me going into the week that marks three years from the time my life – and essentially my perspective and my bearings – shifted, the week that holds the series of days during which my dad was taken to the hospital by ambulance, when we found out about the mass in his head, when he had surgery, when we got the definitive diagnosis – and his 67^th birthday which we spent hunkered down in the Neuro-ICU, in shock and in terror.

There is such a maelstrom of emotions and thoughts going on in my head right now, a source of confusion that makes it difficult to know how to identify my feelings or what needs to be done to get me through the time ahead, by me or by anyone else.  Over and over, I wonder in shock how a span of three years has passed already.  I wonder how we got through those days that seem even more unbelievably difficult from my perspective now than they did at the time.  I wonder when each of the series of shifts in me occurred after that first shift – and when, if ever, the process will slow down or come to a halt.  I wonder whether it is better to try to forget about the panic and the pain of the days of my dad's illness or to let the remaining sadness and the swirl of other emotions that goes along with the anniversary of that first week play out; I wonder if sharing my feelings and my perspective is the right thing to do.  

Remembering what was happening at this exact time three years ago is oddly both grounding and disconcerting.  Thinking back about what my dad and the rest of my family were doing in the weeks and the days leading up to the beginning of the trauma, it was as if we were on an airplane right before the plane hit an air pocket causing a sudden drop.  In regards to the significance for me of the upcoming days, a lot like the people around me now, back then I had no idea that a shift was happening, that something was occurring in those days that was affecting someone close to me and that would eventually change everything.

My dad, helping his youngest granddaughter across a rocky path, just weeks before his diagnosis

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

Looking Back

Sometimes I think back to the time when my dad was sick and I wonder how we made it through what we did.  Getting through those days - and the months of grief since he has gone on ahead - have definitely been the toughest thing I've ever had to do.  It's seemed insurmountable at times, and sometimes it still does.  I've learned a lot along the way about coping and perspective and life in general, though, and hopefully those lessons will continue to carry me through the rough waters of the ocean of grief in the time to come.  

When I look back now at the things I did to get through the weeks after Dad's diagnosis, some of it's a blur, but other parts are as clear as if they'd just happened yesterday.  Some of the memories bring a smile to my face; others make me feel like I've been punched in the gut or start a stream of tears that usually lasts the rest of the day.

One thing I remember is how I preferred to be asked how my dad was instead of how I was; I could give concrete information about his status and what was going on medically with him.  As far as how I was doing - what could I say?  The possible responses were just too overwhelming and confusing and sad.  If pressed, usually I just said, "I'm hanging in there," as if there were another option to that.

Another thing etched in my memory from the time after my dad's diagnosis is the amount of advice we got from so many different sources.  I guess people tend to feel compelled to offer advice to cancer patients and their families - and to those who are grieving.  We heard all kinds of advice - spiritual counsel, tips for dealing with chemo and lack of sleep, and so many more medical pointers from our well-meaning friends and some extended family members.  Most of it was welcome, though I must say that on some days I just wasn't in the mood to get that kind of input because I was too busy/too stressed/too sleep-deprived/too whatever to be receptive to much of anything.  So many times what we were being told were things that didn't apply to my dad or to his type of cancer.  Some days I just wanted to cry and others I just felt like beating someone up and cussing, but, really, with all that needed to be done and with the positive front that we were putting on for Dad's sake (and each others'), that wasn't really an option.

One thing I realized in the midst of all of the suggestions about coping with cancer - and later with grief - though, is that, even though I don’t believe that anyone else can really truly understand how I feel or what I have gone through because of the uniqueness of every situation and every relationship, the fact that other people seem to want to understand and make the effort to reach out is almost as good. 

Even having recently been in the seat of the person getting all of that advice, though, when I hear about someone who is going through something like what my family did, it's really tough for me to avoid giving out my own brand of advice.  I'm not sure why that is: it's certainly not that I think I'm an expert on cancer, or chemo, or grief, or ANYTHING; maybe it's because it's human nature to want to do SOMETHING to help in a crisis, and that seems helpful, despite the fact that I know it wasn't always to us.  Maybe because what happened to us was so devastating and awful that I want to do anything I can that might possibly somehow spare someone else from going through the same things.  

Finding positive stories about people with the same kind of cancer that my dad had helped me in the early stages of his illness; obviously, I thought that if SOMEBODY out there had outlived the prognosis of that diagnosis, that meant my Superhero Dad could, and I felt empowered by others' stories of strength and bravery.  I was trying to figure out what their SECRET to survival was so that I could replicate those conditions for my dad.  Early on, I saw this quote by one of the most highly respected neuro-oncologists in the country, Dr. Keith Black:

If you've recently learned that you have a brain tumor, keep this in mind: YOU ARE A STATISTIC OF ONE.  No two tumors are alike.  No one else shares your genetic makeup and your unique brain structure.  This doesn't mean that you have to face this journey alone.  It means that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you.

I clung to that quote like a shipwreck survivor to a piece of driftwood; besides the occasional pang of complete denial when the message of "This isn't really happening" flashed through my mind, Hope that all of the terrible statistics and the devastating prognosis wouldn't apply to my dad was all that got my family through each day.  As Dr. Henry Friedman, one of the big-time neuro-oncologists that I talked to at the Brain Tumor Center at Duke, said, "Hope provides the patient and their family the strength to continue to battle no matter how unfavorable the odds may appear to be."

From my current vantage point, I know that, in fact, you almost have to have that sense of hope as you round each corner when you have no sense of certainty about where the road will lead after such a shattering diagnosis.  Hope is really all that keeps you afloat some of the time - well, that and the love you feel for the person who is sick.

Another thing I did to buoy our Hope is to reach out for support and information through some online communities like Cancer Compass.  There I connected with some longterm GBM survivors, one with whom I emailed back and forth to get recommendations about the specific treatment protocol he was on, and the other of whom called me on the phone with words of encouragement that I later passed on to my dad and others in the family.  The second survivor, a woman about my dad's age, had been diagnosed almost 20 years before (!!!) and, although she had had to make some adjustments to her lifestyle because of some of the side effects of the treatment (mostly memory issues from the radiation to her brain), she said she was living a good life.  When she said she had taken up bird watching as a hobby to fill her days since she'd had to retire about midway through the years of on-again, off-again treatment she'd endured, and I swallowed the lump in my throat as I tried to picture my dad sitting on his back porch, watching birds all day.  We will adjust as needed, I told myself - all part of the Whatever It Takes attitude that I was so sure would carry us through.  I desperately wanted my dad to be one of the ones who made it through to the other side of the time frame we'd been given; I knew that he could be a powerful motivator and a dynamic speaker, and so I let myself dream a little that he would one day be in a position to help by telling his success story to others with such a devastating diagnosis.

I became almost consumed with statistics while my dad was sick as I worked to convince myself and other around me that Dad would beat the odds.  I knew that there were so many variables that affect "outcome" (what a harsh clinical term that is), but it seemed like Dad had most of the good ones on his side (except for excision of 95% or more of the tumor).  I guess when someone you love gets a terminal diagnosis, almost everyone grasps onto the hope that their person will be one to beat the odds.  It's what we have to do; it's human nature, I guess, to think that fighting and whatever else you've got in you will be the deciding factor instead of cold hard Fate. 

While my dad was sick, I literally couldn't sit still, whether I was physically with him or not.   The sound of silence, to me, sounded like a ticking time bomb, and the voices in my head carried on an endless litany of things To DO, things I guess I believed might help my dad, things I supposed might give me some sort of control over a situation that was spinning out of control, sometimes in slow motion but most of the time at a mindblowingly rapid rate.  During times when I had to sit still like when Dad was trying to sleep, I played Words With Friends on my phone, I wrote in the Notebook, I wrote long emails to the other "inside" family members who were also involved in Dad's care, and I updated the Care Page.  I couldn't watch TV - I was way to consumed.  I read A LOT, anything and everything I could find about GBM.  I took copious notes and made long lists of ideas and questions, mostly related to long-term survival, things that I thought we'd need to know on down the road to improve Dad's quality of life. 

One odd thing that I did at a few points during that time was laugh; it really was the embodiment of the expression, "Sometimes, you just gotta laugh."  It seemed to be so closely related to crying, which I did a lot of then too, although that was more challenging because I didn't want Dad to ever see me cry.  The hurt and the uncertainty was so present in those weeks that it seemed crazy, almost laughably out of control.  It was so tempting to start to feel unlucky, but then Dad would say or do something that would remind me of just how lucky we were in that moment, how it could always be worse, and how the only thing that we could really control at all was our perspective.

“Life is 10% what happens to you and 90% how you react to it.”  ― Charles R. Swindoll

Funerals

I went to the funeral service of a dear friend today, probably the fourth one I've been to since my dad went on ahead, a tough thing to do for several reasons, one of which is that it turns my focus back to when we buried my dad.

Before my dad went on ahead, I remember feeling completely at a loss of what to say or do when I went to a funeral.  "What can I possibly say that will make a difference at all?" I'd think, and, truth be told, there were a few occasions when a family member (whom I didn't know) of a friend of mine passed away and I didn't make an effort to go to the funeral.  I told myself that my friend wouldn't miss my presence there, that I would be just one more person in a sea of people paying their condolences that day, and that it wasn't a big deal if I just waited to check in with my friend later.  

But since then my perspective has changed, and I've started thinking differently.  I now know that it is important to make an effort to be there to support the people I care about who are grieving, even if it's hard and even if I am struggling still with my own grief.  For all of my rambling over the past year and a half about what I didn't appreciate people saying to me in my own grief, the truth is that I STILL don't know what to say to another person who is bereaved.  Here's my gut feeling, though: I think those whose loved one has gone on ahead need to hear that the person who died will live on in the memories of and in the hearts of others who knew him or her.  I think it can be helpful for them to hear about what that person meant to others or even just to hear a story that that person has to share about their loved one.  For me, one of the things that I have feared the most since my dad died is that time and the business of everyday life will swallow up the impact of my dad's presence for other people in the world, like he wasn't here or like his life didn't matter to anyone other than to those in my family.  Maybe that is a common thing to fear in a situation of loss, and, if so, maybe reassurance in some form from those who also knew that person will in some way help those who are suffering from a loss.

From my own experience, I also learned that the significance of following-up with a friend who has lost a family member, checking in with them after a little bit of time has gone by, is so often overlooked, or at least it was in my family's case; I think it's something that most people just don't think about doing, or maybe they think about it but just get too busy with their own lives.  I learned how touching little things are as we go through the process of the funeral are, everything from having someone bring extra Kleenexes to someone taking photos of some of the flowers to the strangers along the way to the cemetery who pull their cars over on the side of the road to let the procession go by.  I learned that different families, different situations, and different religious practices result in different types of funerals, and that that's ok; certainly there's no right or wrong way to hold a memorial service or to grieve.  

The funeral today was at my friend's church; the service was very touching and was reflective of my friend's beliefs and her preference in music and verses.  My dad's, though, was a different style altogether.  Before he got sick, Dad had said many times that he didn't want a big service to be held in his memory after he died; he said it embarrassed him to even think about having lots of people gather in mourning for him.  For as long as I can remember, he'd said that he wanted to be cremated, and several times after going to someone's funeral he commented that he would much prefer it if a celebratory type of gathering could be held in his honor in place of a traditional funeral, when the time came.

And so, on the night he died, my mom, my sisters, my aunt, and I sat in my parents' den and talked about what Dad wanted, and the plans were set in motion.  A memorial celebration it was, to be held three days after he went on ahead, to allow for travel time for the many who came from out of town.  Some of the time around the gathering is a blur to me; I see from this vantage point so clearly the shock that blanketed us then and I know that created a haze over some of what was going on.  I remember who came, though, and I will never forget their efforts to comfort us with their presence and their kind words and gestures during the most difficult time in our lives.  The memorial celebration was memorable, in probably precisely the way it needed to be, and it served as Part One of our bereavement process.

Part Two happened six weeks later, when the cremation had been completed and when those of us who lived out of town had a chance to regroup and return for the burial.  One benefit to delaying that part of the process of laying my dad to rest was that my mom, my siblings, and I had a chance to put some thought into how we wanted to have things go.  We'd decided early on to honor Dad's wishes and to have the burial only opened to close family members, and we agreed that we wanted the ceremony to be held at the graveside only and to pay our respects on that day in whatever way each of us decided.  One by one, each of us chose what part we wanted to play as individuals, to honor and to pay our respects.  My mom, my sister Jennifer, and I planned to read something that each of us had prepared in advance; my brother Lee wanted to read from the Bible, and my sister Nancy did not plan to address the group during the ceremony.  As it turned out, though, Jennifer had trouble getting through the end of her reading, and Nancy came to her rescue to finish the passage.  When my turn came, as I read what I had written, I felt my voice shaking, and I couldn't hardly see through the sea of tears that clouded my vision as I struggled to keep my emotions in check enough to get through the words I wanted to say. I thought I would feel some closure, some relief, or some comfort.  All that really happened, though, is that I did more of exactly what I'd been doing since the moment of Dad's passing:  I breathed, I mustered up all the courage I could, and then I pushed forward to do what I knew Dad would want me to do, despite the pain and the confusion in my heart.

Awareness and Darkness

In a recent dream I had, someone said to me that I have dark humor.  In the dream, my response was that it isn’t humor.  

“Touche’, Dream Self, and how astute,” I thought when I woke up and remembered that part of the dream.  In actuality, I do feel dark, angry, and ripped off.  

Sometimes I feel like I am I the only one out there who is as angry as I am, about suffering such loss, about stupid Cancer, about unfairness, about what is even though nothing about it is right.  I'm having a hard time coming up with any gratitude about my dad's passing or any peace about my dad flying around in the clouds with the angels now that he's gone; I just want him back, healthy.  Even though I'm glad he isn't suffering anymore, really, I know that saying that is just a bargaining chip, and the deal we ended up with isn't nearly the one we should have gotten.  I don’t buy the idea that he is in a better place, somewhere that we should be glad that he got to go when he did.  I get that some people believe that and I guess that’s bully for them if that brings them peace.  It’s not ok with me, though, that my dad was taken so early from this Earth, from this family, from this life where he was still meant to be.  It sucks, and even saying that seems like an extreme understatement.

Sorry - but I can't see how something like this does SHIT to help anyone else.

Sometimes when I hear about this or that week or month that’s been designated for some kind of cancer awareness, it pisses me off.  A lot.  Who in THE HELL isn’t AWARE of CANCER??  So, ok, maybe we all need to have our moles checked more often and be reminded that we should wear sunscreen and not smoke, but, other than that, I think we’ve got AWARENESS covered.  What I’ve had to become AWARE of since my dad got sick has been equally as devastating as the fact that there is Cancer in the world.  Here are the fine points of this Awareness and the Darkness: People you love will get sick or hurt and will die. Some people will get cancer and some won’t; some of those who get it will survive and some won’t, and the determining force between the will and won’t in all of this is a crapshoot. Healthy habits, good deeds, karmic credit, income level, family support, positive attitude, level of education, insurance coverage, prayer, bargaining – it is quite likely that none of this will make any difference at all in whether or not a person survives.  Some of the people who get cancer and some who die will be way too young.  Some of the people you care about will suffer, some maybe even a lot.  In some cases when you are hanging onto the end of your rope by the skin of your teeth, trying to cope with illness and grief, some people won’t care. Some won't notice. They will go on about their lives as usual.  At some point in life, each of us will be brought to our knees in grief, and then, even though the layers of sadness and anger will continue to peel away, there will always be a feeling of rawness for which there is no effective salve.

I freaking hate that I am aware of those things now. I hate it when people hear about someone who has gotten very ill or who has passed away and say, “But I just saw her yesterday!”  or “I was just thinking about him this morning!”  As if that is some kind of an insurance policy or a shield that can keep bad things from happening!  I hate that I know that there really is no protection from suffering and death and that I am aware that we are all just one phone call away from our knees.  I detest having the awareness that it’s really inaccurate when someone says a person’s death was “unexpected” or "untimely."  I hate that I know statistics about brain cancer and that I am aware of how different it is from other kinds of cancer, even if those cancers have spread to the brain.  Sometimes I even feel guilty about the people who have gotten a brain cancer diagnosis since my dad did because we weren’t able to help my dad beat those stupid odds; I really thought we would and that we would then be in a position to offer Hope to others in the future.  

I hate that I know what tumor fever and mottling are and what happens to a human body as it starts to shut down, no matter how healthy it was just a short time ago.  I hate that I will always have to wonder if the treatment we chose for Dad was what made him sicker than the cancer was making him at that point.  I hate that I feel like I have to just be grateful for certain things instead of being angry and wanting more.  

As in my dad’s case, for many cancer patients and their families, at some point in their treatment, the big question becomes not “What will result in a cure?” or not even “What treatment will allow for life to continue the longest?” but rather “Which treatment is the least likely to do harm?”  I hate that I know first-hand that sometimes the best option may be no treatment, even though that feels like throwing in the towel.  I hate that I am aware that not even the doctors or the researchers know what the best treatment is for many diseases like cancer and thus they leave treatment decisions to the patient and/or his family.  Really?  That’s like handing someone a loaded weapon and telling them you’re not sure if it will work as intended, end up being useless as it fails to function, misfire, or just explode in their hands randomly, but at the same time telling them that if they don't man-up and use the weapon to try to protect themselves in spite of the risks, they will surely die anyway. I don't think it technically counts as rolling the dice if there isn't an option of not rolling at all.

When I first heard the "NEGU" (Never Ever Give Up)  creed that is going around in cancer circles, it infuriated me because I felt that it was implying that treatment for cancer should never be stopped and that if it was, the patient and/or his family were wimping out.  Lately, though, I am realizing that what happens is that our awareness - our perspective - about what "giving up" is changes as we are being forced to watch our loved one suffer and as we begin to bargain for lack of having the power to do anything else.  We start to see the continuation of aggressive treatment as something bad and start to look at the cessation of such treatment as fighting and as letting go as we prepare for what comes next as being strong.  That isn't right, to have that awareness or to be forced to make ourselves think that way when what we really want to do is ball up in a corner and cry or kick someone's ass.  That type of awareness is like smelling rotten kitchen trash; before you experience it first-hand, you think it sounds horrible, but, once you're actually in the midst of it, you realize it's even worse than you ever thought it could be.

When I look back at the couple of days that my family had to find and choose an oncologist for my dad, while we were trying to take care of him post-brain surgery and while we were reeling from the shock of the news of the diagnosis, part of me knows that we did the best we could do at the time, but part of me wonders why we didn’t find a way to interview more than one doctor for the job.  I wanted an oncologist who was brilliant about more than just cancer cell replication and chemotherapy, one who never failed to answer our questions, one who cited studies and considered and discussed with us all of the possible options.  Of course, I wanted one who was capable of saving my dad, but, failing that, I wanted one who took each of our concerns seriously and saw the urgency in everything that needed to be taken care of, one with enough steely competence and compassion to take care of my dad, even if the treatments available couldn’t save my dad’s life.  

I really thought our guy had all of those qualities, but I guess like a lot of things in life, that is something that cannot really be determined until it’s too late to change course.

I realize the primary objective of an oncologist is to cure cancer, and, then, second to that, to treat it.  But what about after that, what about treating and caring for the whole person?  Or even – best case scenario – caring for the whole family?  Where is that in all of this Cancer shit?

Really none of those things ended up happening in our case, and I am left with such confusion and extreme disappointment in the medical team as a whole, not just because of the outcome, but because of the things that happened or didn’t happen in the process.  My mind sometimes flashes back to the scene from when my mom, my sisters, and I sat down with the oncologist in Dad’s hospital room, with him in a drugged sleep in the bed in the middle of us, and discussed stopping treatment.  I can still picture the doctor, with tears in his eyes and such a genuine look of compassion on his face, as he told us that we were making the right choice to take Dad home on hospice and then that, although he wouldn’t continue to “officially” be Dad’s doctor (a hospice patient is typically transferred over to the service of a physician associated with the hospice agency), he would call the following Monday to check on Dad and on us.  

At the time, I felt like he was totally on our side, and that felt almost as right as the decision to sign on with hospice did to me.  But later, when he didn’t call us to check in, not that Monday, not EVER, I am left to wonder if my impression of him and my memory of the compassionate expression on his face that day were all as inaccurate as my belief that Dad would beat brain cancer were.

And therein lies an example of the darkness that still surrounds me: the haze of the confusion about what really happened, the memories of my family as we clamored around in vain to try to find something that would get Dad better, and, of course, the questions that as far as I can tell will always remain unanswered:  things like  - Why did Dad have almost no symptoms at all until he was so stricken by the cancer and later by the infection in his body? Why didn’t he ever get any better at all, despite the surgery, the rehab stay, and the treatment he endured (and despite what all those “expert” doctors said)? What caused his immunity to drop so low and him to get so sick that he couldn’t recover? Why did he die when the scans showed improvement?  Why did the oncologist not see how he wasn’t getting better?  Why were we only presented with some of the treatment options, beginning with the brain surgery that didn’t help him at all and ending with the offers for treatment plans that were totally unrealistic when he was so sick that he couldn't lift his head from the pillow in his hospital bed? 

And of course, the mainstay: How (why) did he get brain cancer in the first place?

There again is the darkness, that which threatens to pull me downward in the blink of an eye.  There again is the fierce fury that feels so fresh and even more intense than the day my dad died, the rage that makes me want to rip someone's throat out except for the awful awareness that I have that doing so (or doing anything else, for that matter) won't help a damn bit. The only thing that keeps me afloat is something else of which I have also only recently become aware:  I have a secret weapon - the perspective that Dad left us with, the one that helps me keep some faith in the human spirit and that allows me to hope that this grief won’t always hurt this much, the one that allows me at this point and even with all of this baggage to believe that even if it does that I am strong enough to withstand it.

"You will lose someone you can't live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved.  But this is also the good news.  They live forever in your broken heart that doesn't seal back up.  And you come through.  It's like having a broken leg that never heals perfectly - that still hurts when the weather gets cold, but you learn to dance with the limp." ~Anne Lamott