Wednesday, June 20, 2012

Coming Into View

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

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

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

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

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

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

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

Monday, June 18, 2012

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