One More To Go

I can only think of a few times in my life that I witnessed my dad reacting to a situation in fury: one of those times was on Halloween night when I was about 11 years old.  

That night, for the first time, my parents had allowed me to go trick-or-treating with my friends, without an adult.  When we had knocked on enough doors to fill our pillowcases with enough candy that we were ready to call it a night, we went back to my friend Curt's house about a quarter of a mile away from my house, and then we all left from there to go home for the night.

I think some kids' parents picked them up and other kids walked or rode their bikes in a different direction than the way I went.  I hopped on my bike and headed off toward my house under the patchy beams of the streetlights. When I was about eight houses away from my own, I saw my dog trotting towards me; when she saw me, she turned and ran alongside my bike.  We continued along that way until suddenly from out of the shadows came two people wearing costumes and masks.  Both had a can of shaving cream, which they squirted into their hands and threw at my dog and me, chasing after us and doing the same thing over and over again until both my dog and I were covered in soapy foam.

By the time we'd made it to my driveway, I was crying, both out of shock and anger and because the shaving cream that was running into my eyes was stinging.  My dad was in the kitchen when I came in.  He looked up and saw me crying, and I saw his jaw clench as he stood up.  After I had told him what had happened, he told my mom to get a towel for me and my dog, and then he stepped outside and slammed the door behind him.  I wasn't sure what he was planning to do: it wasn't too often that he saw me crying or that he slammed a door like that.

I was still trying to get the shaving cream out of my hair a little bit later when the front doorbell rang.  When my mom and I answered the door, we saw two boys standing on the front porch just in front of my dad. After they sheepishly looked in my direction and told me they were sorry, my dad quietly said, "You still have one more to go" and then he marched them around to the side of the house and my mom and I heard them apologize to my dog.

I'm not sure what has made this event stick out in my memory for so many years: it wasn't the first time that I had seen my dad stick up for someone who needed help, and it wasn't the last.  It was one of a handful of times that I can remember him jumping in and fighting a battle for me, though, instead of encouraging me to handle it myself, and, although I don't think I ever told him, I appreciated the way he handled it because it somehow didn't leave me feeling ashamed or afraid.  

The good old days, when kids created their own costumes out of old clothes and scraps of material - or, as in my sister Nancy's case, they just wore their superhero underwear

A New Perspective on Hope

I didn’t think much about the concept of Hope during the ten weeks my dad was sick; rather, my family and I clung to it like a lifeline, as if it was the medicine that we needed to make it through each day and each night.  After he died, whenever I thought about Hope and the way we had had so much of it during those tumultuous weeks, I felt like a kid who’d been lured into a kidnapper’s vehicle through promises of puppies and candy.  I felt so incredibly disheartened and disappointed in myself for having had such complete belief that my dad (and thus my family) was going to beat the odds. Afterwards, after the rug had been pulled out from under us, I felt like I should have at least suspected that it might have been about to happen.

Here I am three years from the month in which my dad was diagnosed, still shocked and confused that the whole thing happened.  One thing that has changed for me lately though is my view on Hope:

A child I know was recently diagnosed with cancer.  His mom, a good friend of mine, and I have been talking about the injustice of it all, her fresh shock and fury easily unearthing some of mine.  I have felt especially at a loss as to what to say to her since her son’s diagnosis, mainly because I know how empty certain standard platitudes can sound to someone who is on the inside of the tragedy and who is struggling to survive in the midst of such unbelievable turmoil.  “Hang in there”??  What else would she do?  “Be strong"??  As in, don’t cry – or don’t run away?  “Let me know what you need”??  Maybe she can work on making a list and then call all of us to delegate in her “spare” time.  And then there’s the thing that I thought to be the worst form of banality when my dad was sick: “I know just what you’re going through.”  I’ve said it before, and I’ll say it again: that statement will never be true for any two people, even if those individuals are in the same family, are taking care of someone with the same type of cancer, or have some other type of parallel.  It’s always different.  

I did come across a quote that I thought might be something to consider as other words continued to fail me, though:

I came across a story about a child with cancer that was posted on a blog a few weeks ago with respect to Childhood Cancer Awareness Month in September, and some of the words from that story stuck with me: every family battling cancer needs hope.  I like the way the author used the term "family" in that statement as the battle is fought by entire families, and the truth of her words really hit home for me.  People need Hope, especially in the midst of the most difficult things they must endure, like the catastrophic illness of a loved one. That Hope can be for varying things depending on the circumstances - Hope for a cure, for comfort over pain, for more time together, for a solid treatment plan, for a trustworthy medical team, whatever is chosen by each person and by each family.  Sometimes that Hope is nothing more than the knot in the end of the rope that we've tied in desperation and to which we cling so fiercely.  Hope has such value, though, as it is what keeps us from giving in or giving up; it's not that we're heroic or tough or even smart and that's why we keep going in the midst of tragedy - it's that we have to believe so that we are able to persevere, to make it to the next corner, where there just may be something that will change the course of things.  It's stubbornness, it's strategy for survival, and it's love; it's what we do because it's sometimes all that we can do.

In that light, Hope seems brilliant instead of foolish to me, and, for that change in perspective, I am grateful.

From This Vantage Point

During the ten weeks that my dad was sick, whenever I heard someone use the phrase "at least" in reference to my dad's illness, my gut burned with fury.  I didn't want any at-leasts, or rather I didn't want to have to have any.  I wanted my family to go back to the way it was, and, as I tearfully texted my husband late in the night after we brought Dad home from the Brain Tumor Clinic at Duke, I wanted my dad back.  It seems selfish and childish to me now, but I was in a state of shock and disbelief that that changes that had occurred in such a relatively short period of time had happened.  The doctors at Duke had promised us that the treatment Dad had gotten just after his appointment there was like "magic;" they told us that within 24 hours of getting the medicine we would notice an improvement.  Instead, though, probably due to the toll the stress of the trip had taken on him, he seemed worse.  To me, there certainly didn't seem to be any at-leasts in the picture at the time.

Dad, competing in a half-Ironman triathlon just weeks before his diagnosis

The at-leasts poured in from seemingly everywhere while he was sick and for awhile after he went on ahead; I realized even on my worst days of rage and despair that everyone who said those words did so in an effort to help: "at least he had his family around him the whole time he was sick;" "at least he had good insurance;" "at least you got to spend those extra weeks with him;" and then, the hardest to swallow, "at least you were with him when he died."  We even got a few at-leasts that weren't true ("at least he didn't suffer" being the most blaring untruth).  People were just trying to help, I told myself then and in the months that followed.  I knew it was true; I just hated that I was suddenly on the receiving end of such a phrase. Just having part of what I had or should have had didn't seem good enough.

The flag at half-mast at the cemetery on the day of dad's burial

Over the past six months or so, though, I've been thinking more about those at-leasts, and I've started to see them a little bit differently.  Don't get me wrong: I still long for the whole; it's just that I'm starting to see the value in the in between.

I think the change has come from my reading about the struggles of others - their challenges, illnesses, and grief mostly - and seeing that the people who seem to come out ok (that is, those who don't end up with a completely bitter outlook on life, one that seems so damn disrespectful to the people in their lives including, in the stories of grief, the person for whom they are grieving) are the ones who lean at least a little bit into the at-leasts.  

My dad wasn't a big believer in thinking about Worst Case Scenario; although he like to plan ahead, he frequently said that he thought worrying was a waste of time.  I'm actually not sure what he thought about at-leasts, if he thought about them at all.  I know he was a positive thinker, though, and I can see now that at-leasts fit into to that way of thinking, which is further evidence that it's not a bad idea for me to reconsider my view on that point of reference.

From this vantage point on the road of grief, I can see the value of at-leasts.  Saying "at least" in reference to one's own troubles is a way of keeping perspective; it's a way of reminding ourselves that, while we are powerless to change certain situations and to stop certain things from going wrong, we have a choice in how we view things, even (and maybe especially) in the midst of tragedy and hardship.

And so I have changed my opinion on at-leasts: I believe in the goodness of at-leasts and of positive attitudes; I believe that each of us has the power to take tough circumstances and bad breaks and find the good in those situations.  And that, more than anything, is what gets me through the day now.

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