Saturday, August 6, 2011

Faux Fitty


You always want to try to figure out exactly how to celebrate your milestones as a person who 'blogs'.

Somehow I missed 400.

Slipped right under the radar. That's because I used to store all the unpublished heated rants, all the works in progress of various chapters in that Chronolillogy thing I started and so on in the Blogger Dashboard. So I never really saw my actual post count.

When I moved everything to a storage folder recently that changed, so I was able to see exactly where I was, and today finds me writing a blog entry for the four hundred and fiftieth time.


The sad thing is that I should be at 500, and WAY beyond, by now. But I get sidetracked very easily. It's a combo of Life, Stuff, ADD and my nature. And even though I have been writing some at Mission: iPossible! and creating graphic content, that does not count over here.

I had hoped to bring in Post 450 with much fanfare and talk about a ton of great things going on, and there are plenty of great things to talk about. It was going to address all the dangling strings in my personal life, and there are many. I'll save that for another time and instead devote this post to the one topic that this blog always, no matter what, circles its way back to.

Bennett.

We are getting very, very near to the 2-year anniversary date of the removal of his brain tumor.

TWO YEARS.

Hard to imagine that, huh? That's a long time. Two years ago that I watched him on his recovery room bed, wishing there was something more I could do for him, feeling helpless and confused. In a room full of people I loved and cared about and who cared about me, I never felt more isolated and alone in my entire life.



On August 31, 2009 Bennett left Cleveland Clinic after his Temporal Lobectomy. Almost two years to the day later, on September 2, 2011, Bennett is returning to have an un-scheduled MRI at Cleveland Clinic. Any of you that keep track of Bennett's Post-Operative MRI and other tests he has regularly might say 'Hey...wait a second, UN-SCHEDULED!?! And didn't he just have one around 6-8 weeks ago!?!'

Yes, he did.

Around a week ago, I began to notice a very subtle, almost imperceptible swelling on the left side of Bennett's head. There was a very slight, nearly imperceptible increase in vascular intensity there too. His left eye just looked more tired, more...weary. And very occasionally, he would rub it.


For a couple of days, none of those symptoms came together in my mind. But one day my eyes widened as I realized...I had seen this set of symptoms before.

A long time ago...right before he started to have Infantile Spasms, the most incredibly badly-named, under-rated seizures of all time. A short time before we discovered he even had a brain tumor. I guess this failure to put the pieces together for a couple of days will be, if something turns out to be wrong, another thing to add to my Guilt Portfolio.

When I tried to show people though, no one else could see it.

And I do mean no one, not even his nurses and other medical professionals.

This is nobody's fault, by the way. I am a mutant.

I am a creature of extreme detail. Ask my former boss at Palisades, he'll tell you. He was shaking his head in a good way and smiling the last time I was at his house going through old Palisades stuff in his basement that I hadn't touched or even seen since 2005 and explaining to him why two action figures of Adventure Kermit, that looked almost identical to anyone else, were different in the sense that one was a PRE-production sample and one was a mass-produced product.


Lately, I have had reason to have a measure of self-doubt. So I was a little slower on the draw in accepting what I was seeing in Bennett's features, and even I was not 100% sure I was seeing what I was seeing. Was I over-reacting? How could I be sure? Even so, when Bennett was at the Cleveland Clinic last Monday for his Psychological Evaluation we had him checked out in a cursory way by the Psychiatrist up there, who also did not see this set of symptoms in Bennett or any other signs of strange or unusual behavior.

Other than severe, SEVERE, delays...but I'll get to that another time.

On Tuesday, I remembered something. I should have remembered it sooner, but dammit all to Hell this Topamax really does screw with my memory access. I can't WAIT to go off this crap. The last time this occurred with Bennett it showed up best in photography, NOT when looking at him in THREE DIMENSIONS. So I went to the computer and started pulling shots from the week and examining them. I blew some up, cut, shifted, moved, drew lines...much the same thing I did in late 2008 and early 2009.

And just like before, even though subtle, in 2-dimensions, these variations were much easier to see.

So we called the Clinic, explained the situation, and they moved his November MRI to the soonest they could do it.

September 2.

That sucks.

Do not misunderstand me. I have never, not once, had a bad experience with Cleveland Clinic or the doctors there. And Bennett is not in any kind of distress. If I called them today and said 'He's having seizures.' I am confident that we would be packing a bag and I would not be writing this.


But Tom Petty had no flies on him...the waiting really is the hardest part. I look at my beloved son and wonder if there is a ticking time bomb in that sweet-smelling head, waiting to explode. It does not make for a restful sleep, that I can promise you.

This is because I know that if the tumor has returned, then two years is actually not that long at all. Two years is quite short in 'tumor years'. It means that the next steps to be taken will be brutal. They will be harsh. There will be an immediate surgical reaction, followed shortly thereafter by some probable radiation and possibly followed by some chemo-therapy though not necessarily.

More of his brain will be removed. Much of his progress will be lost. The boy I know, part of him at least, will slip away from us. And whether or not we find him again I do not know.

And if it has returned, there is a higher probability that it could be worse in Grade than before, and it was scary previously, and there is a higher probability that it could return AGAIN after this, more quickly, more regularly, and Bennett's life, and the word 'Life' itself and how it relates to my son overall, is forever and irrevocably changed.

Or...it could be nothing.


Unfortunately, I'll be in surgical recovery, a week out from a Tonsillectomy, when that 09-04-11 MRI takes place. I'm going to have to play it by ear (or mouth). If I can handle it physically I am going to go up with Jen. If not I will hang back with my Mom, who is coming up for that week to help out since I will be off my feet for a while after I get these stinky, awful things ripped out.

I am monumentally frightened. Shaken. Worried. But all I can do today is keep a watchful eye on my son, see if there are any changes, try to rest, stay motivated about the things I care about and be strong for my family.

They will need me to stay frosty and as focused as I can be, now more than ever.

OUT.


19 comments:

  1. "Infantile Spasms, the most incredibly badly-named, under-rated seizures of all time" THIS! A thousand times this!

    Hang in there Ken. Believe me I wish there were more that I could say to help. Try not to beat yourself up too badly with that guilt bag you've been carrying around -- which is easier said than done I know. I'm currently beating myself up for not being able to diagnose a perferated appendix by the grumpiness Liam exhibited for 36 hours before our rush to the hospital. Rational? Not at all, Liam didn't give us any other sypmtoms to be concerned about, but fear, worry, and yes, guilt know nothing of rational.

    So give that boy a nice big hug and give yourself the credit you deserve that your mutant abilities have allowed you to notice these things when you have.

    Congrats on 450 posts and I hope the tonsils don't bother you too much leading into the surgery.

    We'll be thinking of you and the whole family.

    Stay frosty.

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  2. Oh, Ken. That beautiful boy and all your worry and anxiety. Hugs to you across the ether.

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  3. Kenneth,i am so incredibly sorry that you and your son and your whole family are giong thru this.if i could.id put myself there and make sure you had things as normal as you could.I love you little brother,and my nephews.more than i can say and more then you will ever know.hang in there.and i will be praying for a quick recovery for you and that all goes well with Bennett.

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  4. I'm so sorry Ken. I can only imagine the stress.

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  5. I HATE that sinking feeling in the pit of the stomach that comes as thoughts "come together" like that! So sorry. Here's to the prayer of the alarmist: "Lord let me be wrong!"

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  6. Ken, you are not a mutant, you are a parent. And you know Bennett best. If I have a feeling and the docs don't, I get more worried because I'm usually right.
    I love my ped, but I had an argument today because Jax is growing Pseudomonas in his trach, and she didn't want to treat it for fear it would eventually create a superbug. I said we are treating it because he's junky and coughing and just plain miserable! He's only had Pseudomonas twice so far in two years, I'm not horribly worried about a superbug yet!
    Praying the MRI is good!!

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  8. Waiting it out alongside you my friend. Lending all that I have, which basically amounts to unwavering friendship and an abundance of prayers. Oh, and an ever present listening ear, but I suppose that goes along with the friendship thing, doesn't it?


    *That gnarly scar still gets me everytime I see it. Blows my mind.You sweet, sweet boy ...

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  9. Yeah, that guilt graphic you inserted is pretty much reality for all of us parents, isn't it? Ugh. Hate it. Cause you can tell yourself over and over that you shouldn't be guilty, but in the end, you're always left wondering "Did I do enough?" exhausting. seriously.

    ANYway, you know I'm the praying sort, so I'll be praying for sweet Bennett, for the docs, for you and your wife and for strength to endure the immensely difficult period you're in called "Waiting". We're all here for you.

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  10. Evening, please take a look at my blog - it tells all about the book I'm trying to put together. I am trying to gather a compilation of stories from Mums and Dads that have at some point received the news that there is something wrong with their child. In the hope that, with stories of honest reactions we may help others that hear this news feel a little less alone. In advance, I thank you for looking at my blog and please feel very free to share it around. Thanks, Trine http://alittlelessalone.blogspot.com

    together we can do alot of good.

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  11. @Trine:
    I find it the height of crass that you would advertise your blog and your project after this particular post of Ken's. You need to be more careful about this if you expect any co-operation from this group.

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  12. To all of you who send support and prayers, many thanks. To Claire who has my back always, thank you as well.

    To Trine, who I sent a message to privately, I have no issue with you, I am in a place in my head where I just don't get my panties in a bunch anymore about stuff like this.

    However, I do absolutely back up Claire's questioning of the judgment of the particular post you chose to come in and introduce yourself, without even so much as a courteous nod to Bennett's current dilemma.

    And I say that because if you do this, and want parent participation, you are going to have to be super careful about their emotions and read the posts you comment in. I might have written that Bennett was in serious condition, about to die. That would not be a post you would want to drop in your invitation, see what I mean?

    Your enthusiasm is great, just use some caution and you will be fine. These are very tricky waters to navigate, and doubly so if you do not have a Special Needs son or daughter, and I could not tell from your blog if you do or do not. That matters to many people. Some might view it that you are an outsider. Some.

    I e-mailed you personally and said I might be interested in the project conceptually, though I would want to know more about it, but I would also caution you that premise overall has a fundamental flaw that you will need to overcome somehow in your treatment of the material.

    These parent's stories do not wrap up in the days after you receive the news that something is wrong with your child. This experience is not like where were you when you heard that JFK, John Lennon or Ronald Reagan was shot. In fact, hearing any news from a doctor about your child and the hours that follow is merely the beginning.

    What occurs after, what resonates beyond...the days, weeks, months and years following that statement is much more what the story is. That's why you find these blogs that exist, written by people like me or pressuresupport, who are fairly new to the party, Zoey's Mom and the Lundgren's and Lacey who have been doing it a while longer, and veterans like Claire, SingleDad and Elizabeth. An entire spectrum of people represented in one sub-culture.

    But I wasn’t offended. Takes more to get to me these days. I’ve reached a place in my head that I can’t quite put into words yet, though I am trying, as I hack away at what will be quite likely the longest blog post in world history. It’s long even by MY standards, and that’s long. I doubt people will even read it because of how long it is, but I have had a sort of perception-altering experience and when that takes 20 years you kind of have a lot to say about it. 

    But your project...I don't know, I just have a feeling that the idea as you described it won’t have wings unless you can resolve the Aftermath problem. Do you ever watch the television program 'Aftermath' with William Shatner? It actually does a good job with going over major sociopolitical/media events of the last 30 years and tying them into what has happened since and how it relates to something that is going on in the world today. It doesn't always hit a bulls-eye, but some shows are right there close to the target, like the one with Daniel Ellsberg or the one with David Kaczynski.

    If you can resolve that issue, and hammer out some details of what you plan to do as far as usage of the material in a legal sense I may contribute just as long as I get exposure for the Mission: iPossible charity in there, that would be the one thing I would insist on in exchange for any kind of contribution of my time.

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  13. OK Ken. Keeping you ALL in our prayers. Prayers for good results for all of you and an easy recovery from your surgery.

    Please let us know if there is anything we can do!!!!


    Hugs!~

    Steph and Christopher

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  14. Claire, Ken: She's probably a social worker.

    Ken, got a thermos of vodka martini here ... come on over.

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  15. So sorry about the subtle changes you are seeing. I truly hope it is nothing serious. Thinking of you and enjoying every i post you and the MiP blog put up.

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  16. Oh Ken, that first picture of sweet Bennett does me in! I am so sorry for ALL you have going on right now. I'm anxiously waiting, right along side you all, keeping you in my prayers on a daily basis!

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  17. Really sorry to hear about Bennett. I will be praying and hoping the MRI comes out OK. Hopefully you can make it up there after the tonsillectomy and be with your family.

    Also wanted to say congrats on the 450 and also on all the good things happening at MiP. It is always awesome to see the pictures when the kids get their iPad.

    Kevin

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  18. Oh Ken, I'm so so sorry. The existential terror you feel while waiting for those damn medical "verdicts"... I'm praying for your beautiful boy and you and your family.

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