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.

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