A bit of progress. Before we left tonight Ken was able to do a little thumbs up for the doctors and wiggle his toes on the right side. The left side was significantly weaker, but he did move his toes some.
Thank you everyone for all the love and messages. We are getting them and appreciating them, very much.
My favorite punctuation mark is the semicolon. And it's an apt metaphor for recent years of my life: it's more than a comma pause, not quite a period stop; it usually appears in the middle of a sentence; no one quite knows how to use it properly; it's a sigh of contemplation; a knowing wink; an upward glance of reflection.
Thursday, September 30, 2010
serious as a heart attack
So, our boy is very, very sick. The sickest (as i was informed by the Head of the Neuro ICU) of the sick. I would have been just fine without that particular information. Ken had a heart attack. Yup. They aren't sure how serious yet. Won't know for 24 hours. They can't do anything about it because all the meds they'd give him for it would be harmful to his head. I feel like somebody just set me down in the middle of a foreign country with no map, no knowledge of the language, culture or history. I am lost. And I want to go home. I desperately, desperately want to go home. I want to be at my kitchen table eating Ken's french toast, talking with the boys. I want to listen to Ken explaining some random fact to Wyatt about the way the world works. That is what I want.
update
He is out of surgery. He is intubated, has a tube coming out of his head and something to measure his brain pressure. They had to remove a portion of his skull in order to give his brain room to swell. They won't know if he's had a stroke or not for a few days. They are watching him closely right now. He'll be kept asleep for 2-3 days. That's all I got.
setback
Ken has had some setbacks. He had been responding well, lifting hands and legs, pushing and pulling. Equal strength on both sides. However this morning he showed marked weakness on his left side. It happened very quickly. The doctor fears that this may be a blood flow issue. He had a CT which showed a fair amount of swelling (no big surprise there) which could explain the blood flow issue, but because it came on so suddenly the doctor is afraid that it points more toward a stroke or that the blood is just not getting through. He had to repair a tear in an artery and that could quite possibly impede the blood. So we wait. He'll be in the ICU at least through the weekend.
Okay, so here goes:
Dear Universe,
He is a good man. He is kind, sweet, honorable. He is my home, and best friend. I know I have had good luck in the past. I got my sister back, and Gus. But please, please give me back Ken. Have I mentioned he has the softest and warmest hands, and a wonderful giggle? Have I mentioned that his kids adore him, that when he's with him putting them to bed his voice actually changes with love?
Yours,
Jamie
New update. He is hemorrhaging. They are taking him into the OR again. They will be taking off a piece of his skull to give the brain a place to swell, and try to deal with the hemorrhage. I don't know what to say now. I don't have words, just love, fear and hope.
setback
Ken has had some setbacks. He had been responding well, lifting hands and legs, pushing and pulling. Equal strength on both sides. However this morning he showed marked weakness on his left side. It happened very quickly. The doctor fears that this may be a blood flow issue. He had a CT which showed a fair amount of swelling (no big surprise there) which could explain the blood flow issue, but because it came on so suddenly the doctor is afraid that it points more toward a stroke or that the blood is just not getting through. He had to repair a tear in an artery and that could quite possibly impede the blood. So we wait. He'll be in the ICU at least through the weekend.
Okay, so here goes:
Dear Universe,
He is a good man. He is kind, sweet, honorable. He is my home, and best friend. I know I have had good luck in the past. I got my sister back, and Gus. But please, please give me back Ken. Have I mentioned he has the softest and warmest hands, and a wonderful giggle? Have I mentioned that his kids adore him, that when he's with him putting them to bed his voice actually changes with love?
Yours,
Jamie
New update. He is hemorrhaging. They are taking him into the OR again. They will be taking off a piece of his skull to give the brain a place to swell, and try to deal with the hemorrhage. I don't know what to say now. I don't have words, just love, fear and hope.
Wednesday, September 29, 2010
more of an update from Jamie
He's groggy and he's sleepy, he's had a little to drink, he's responding well, moving well. I wanted to make this into a haiku, but I've been up since 4:30, and it is just beyond me. That last bit rhymed though, eh? Clever.
Ken's Progress
So, here i am blogging. I kind of, really, very officially hate blogs. Maybe because I associate it with the people I love being sick. My sister, Gus, and now Ken. Yup, hate blogs. I know it's not rational, but I do. Surgery is done. He's being moved to the neuro ICU. He's moving both sides, left is weaker. And he's saying his name. Dr. Ogilvie is "cautiously optimistic". Cautious optimism.
Tuesday, September 28, 2010
Last Pre-Surgery Post
I always had the sneaking suspicion it would take a near-death experience to get me to live my life courageously.Though I don't actually know if the near-death experience was finding out about the aneurysm, if it will be the surgery to remove the aneurysm, or neither of the above. I don't know if my second chance comes after tomorrow or if it was the last three months.
(By the way, I also hope my near-death experience can serve as your own.)
During the first week after my diagnosis, I felt like I had nitro-glycerin in my head. Everything I did was coupled with the thought, "This could be the last time I..." And every time my photo album screen saver started, I had to quickly move the mouse and stop it. Felt too much like my life flashing before my eyes.
Hopefully, there will be more to come, more to say. But if things don't go well, I only ask that you continue to put positive energy (and deeds) toward my family. Lend them the support they'll need, as much as you are able. Of course, everyone still has their own lives to live.
My other request would simply be that you live your lives appreciating what you have. And, if you don't appreciate what you have, please do something to remedy that, would you please? If there's something you've been meaning to say or do, do it now. There will always be tomorrow, but not always for you. Of course, that's pretty limiting -- to only have grand ambitions and desires you can achieve in a moment. It's okay to plan for the future and work gradually toward a goal. Just make sure it's the goal you truly want. So even if there is no tomorrow, for you, you'll head off to... wherever... knowing that you lived your life on your terms. And so everyone else you leave behind will remember to do the same.
And please watch Cougartown (Wednesdays on ABC) and Scott Pilgrim vs. the World (when it comes to DVD). They've both enriched my life; perhaps they'll do the same for you.
(By the way, I also hope my near-death experience can serve as your own.)
During the first week after my diagnosis, I felt like I had nitro-glycerin in my head. Everything I did was coupled with the thought, "This could be the last time I..." And every time my photo album screen saver started, I had to quickly move the mouse and stop it. Felt too much like my life flashing before my eyes.
I also was motivated to "live in the now" and carpe the diem. I considered doing crazy things (some very sedentary but crazy things) and blaming them on the aneurysm.That didn't really pan out. But I woke up every day a little surprised. I savored every moment. I remember a very specific moment, when I was changing the kitchen garbage bag, thinking, "This might be the last time I change the kitchen garbage bag." What kind of last act would that be? I should have been grabbing life, not stretching an ill-fitting plastic bag, with both hands.
But I also realized that Hedonism is completely impractical. Someone has to change the garbage bag. Usually, it's Jamie. But that's beside the point.
Anyway, thinking about the time-bomb in my head, I was also very calm. I had found a Zen-like state, where I wasn't sweating the small stuff. Though there's a fine line between Zen and being emotionally unavailable. Still, I've been trying not to sweat the small stuff, while also acknowledging that the best things in life are small. Usually, they are moments. So we need to appreciate some small stuff while ignoring others. It's all about priorities and perspective.
If it isn't readily apparent, I so want to take something away from this experience. I don't want it to go to waste or lead to bitterness. I hope the same for you all. Call it clarity, call it purpose. But hopefully call it lasting and meaningful. It's so easy to get sucked back into the bad minutia, all the while neglecting the good minutia. Over these three months, I've definitely felt myself wax and wane between clarity of purpose and the blinders of everyday living.
I've cried twice, once at the beginning of this ordeal, once during the past few days. Which is really saying something, since I hadn't had a real cry in a good thirty years. I have to say, I don't like the sound it makes. I don't like feeling that out of control. It was way too visceral. I applaud anyone who can do so on a regular basis and remain a functioning member of society. Both times I cried, I was thinking about leaving my kids behind. I do not want to do that. I am going to do everything I can to prevent that.
But I've also seen how blessed I am by everything I have now. Never mind what I haven't yet accomplished. I have a ton now. I appreciate everything everyone has done or said for me and my family. All the well wishes, positive energy, prayers, whatever you want to call them. I'm not a religious person. I could follow that with, "but I do consider myself a spiritual person." I'm actually not sure I do. But I am a devout agnostic. There are too many unanswered questions to believe otherwise (like, what's on the other side of an expanding or contracting universe?).
You've made me feel accomplished -- knowing that I've touched people's lives in a positive way more often than not.
You've made me feel accomplished -- knowing that I've touched people's lives in a positive way more often than not.
Hopefully, there will be more to come, more to say. But if things don't go well, I only ask that you continue to put positive energy (and deeds) toward my family. Lend them the support they'll need, as much as you are able. Of course, everyone still has their own lives to live.
My other request would simply be that you live your lives appreciating what you have. And, if you don't appreciate what you have, please do something to remedy that, would you please? If there's something you've been meaning to say or do, do it now. There will always be tomorrow, but not always for you. Of course, that's pretty limiting -- to only have grand ambitions and desires you can achieve in a moment. It's okay to plan for the future and work gradually toward a goal. Just make sure it's the goal you truly want. So even if there is no tomorrow, for you, you'll head off to... wherever... knowing that you lived your life on your terms. And so everyone else you leave behind will remember to do the same.
And please watch Cougartown (Wednesdays on ABC) and Scott Pilgrim vs. the World (when it comes to DVD). They've both enriched my life; perhaps they'll do the same for you.
A Few Good Ideas
Part of what I needed to do while wrapping up at work was document some of my processes, for myself and others. In Knowledge Management we call that "collecting tacit knowledge". In the disability insurance world, we call it planning for the proverbial beer truck.
It definitely felt good to document the undocumented. And while I'm not necessarily looking to compile my legacy here, there are certainly some thoughts and ideas I've had which have thusfar gone unexpressed, except to individuals here and there. So I would like to put digital pen to digital paper to make explicit my otherwise unrealized ideas.
I've had a ton of them over the years, most of them long forgotten. As a teenager, I carried around my grandfather's IBM Think pad. See, prior to the other kind of ThinkPad, IBM employees actually carried around a small notebook that said "Think" on it. Everywhere I went, I had "Think". And when I had a thought, I would write it down. It was like Tweeting, but to myself. I thought I would somehow catalog them at some point -- small details for stories, book ideas, inventions. When I got my first Palm Pilot, I even installed a database program (which I called "Think"), to try and bring more structure to my thoughts. Yes, I added metadata. But that didn't last long.
I'm not sure what sort of Think app I can get for my iTouch. I might need one. Because as much as I've been thankful for every breath lately, I've also cherished every thought. So I want to take a little time to jot down the ones that stayed with me:
The Memory Box
The idea here is just to take a relatively nice box and fill it with memories. Like a Pensieve of slips of paper. I started one a long time ago for my parents. And, of course, never finished it (sorry, mom and dad). Just random thoughts of childhood which were meaningful at the time and continue to resonate for no particular reason -- swallowing a Ringling Bros. Circus flashlight lightbulb; "running away" under the dome climber during Apple's Way; standing next to the dishwasher of our new house (when I was 3) and asking when we could "go home". There are plenty more. Things we never have pictures of (especially back in the day of actual film), but moments we would or could never photograph regardless.
QuinCSI
A video mash-up of Quincy, M.E. and CSI. Basically, I wanted to re-edit (and edit down) an episode of Quincy using the style of CSI. And, of course, end the lead-in scene with Quincy saying, "But, Sam, it was murrderrr..." (smash-cut to title sequence, set to The Who's "Pinball Wizard").
Formulas
This is another video editing project. I want to piece together bits of episodes from formulaic shows into a brand new episode. Like that Three's Company episode where Mr. Furley misunderstands something he overhears Jack and Chrissy saying. Then wacky hi-jinx ensue, until they realize it was all just a big mistake. And go to the Regal Beagle for a beer. Remember that one? Exactly. I could edit down 100 episodes of that show into one.
This is another video editing project. I want to piece together bits of episodes from formulaic shows into a brand new episode. Like that Three's Company episode where Mr. Furley misunderstands something he overhears Jack and Chrissy saying. Then wacky hi-jinx ensue, until they realize it was all just a big mistake. And go to the Regal Beagle for a beer. Remember that one? Exactly. I could edit down 100 episodes of that show into one.
Journey to the Center
I'll try to keep this as family friendly as possible. This is a commentary about gender politics. It's a novel about a man who has "relations" with a woman and then wakes up trapped in a strange palace. There he finds other men in the same situation, all trying to figure out how to escape. Oh, and they have erections all the time. It would probably be called Dickland for scandal/marketability. But, really, it's a look at gender stereotypes. Seriously. Can't we all just get along?
Reflection
I never quite figured out how this would work, but it starts with the basic premise that all mirrors have stopped working. Everyone gets lost without their vanity. I needed to do more research on optics, though the science isn't all that important. This was something I came up with a long time ago. I think when I was 15, staring at a fly outside the World Trade Center, during a party at Windows on the World (I'm sure it's in a "Think" pad somewhere). It was a road trip story, a quest. That ended with the lead character seeing his reflection in his lover's eyes. Maybe it's too hoaky. My "Careless Whisper" (which I remember George Michael later calling naive). Or maybe it's just a Kilgore Trout story, not actually meant to be fleshed out.
Play dom-jot, Schumann?
For STNG fans only, remember the episode Tapestry, where Picard gets stabbed through the heart? I always wanted to make a t-shirt that says, "Play dom-jot, Schumann?" with composer Robert Schumann's head replacing Picard's, standing next to a menacing Nausicaan. It's not worth explaining. If you think it's funny, you're a geek.
Evacuation
I took an environmental law class in college and did a paper about extreme environmental activism for my final presentation. I created an amalgamated character who went from working with Biosphere 2, Earth First, the Voluntary Human Extinction Movement (VHEMT), and the Involuntary Human Extinction Movement, to developing a scientific conspiracy to save the planet by convincing world leaders the Earth was headed for an environmental breakdown (such as, I don't know, global warming). And that evacuation to a space station was the only way to save humanity. With the human problem eliminated, the planet would be saved.
Band Names
I used to maintain a long list of band names. Not sure where it is at this point. But I think my favorites are still "The Greatest Hits" (first album, "Best of") and "The Best Of" (first album, "Greatest Hits"). Also, if my friend Dan and I ever get our act together, we'll start the serendipitous Shapiro-Wilk Normality Test. I also thought it would be good to have an album of songs specifically written for commercial use. Like "Closing Time" or "We Are the Champions" or "At the Zoo".
Tear Bottles
A few months ago, before my diagnosis, I had a waking dream, on the cusp of slumber. I was in a cave, and a woman (a shaman of some kind), was showing me around. This was her home. One entire sloped wall had been carved into a set of stone shelves. Those shelves were filled with small glass bottles.And each bottle was filled with a clear liquid. I asked what they were. She told me that the bottles were filled with her tears, from particularly difficult times in her life. I've since done some research and discovered that tear bottles and Lachrymatory have had historic and cultural significance for thousands of years. But I was not consciously aware of any of that history when I had my "vision" (perhaps my aneurysm was). And for me, the message was about building strength through memories of adversity, honoring and appreciating obstacles, not mourning. So I'm counting it as my idea.
Lightning Farms
Let's harness the power of lightning! Lightning rods throughout Florida, tied into a storage and distribution system could solve the energy crisis. Until, of course, it's discovered that absorbing lightning either prevents the creation of new lightning or that certain plants need ground hits to survive.
Please Don't Let Me Break Him
A bedtime book for new parents, all about the panic-stricken first days of belly button nub infection paranoia, feeding guilt (too much? not enough?), diaper hovering (too much poop? not enough?), sleeping trauma (too much? not enough? is he breathing? I'm going to poke him just a little to make sure. Okay, just a little more.). I started this in part as a blog (with a few entries). But I think it would work best with illustrations alternately adorable and horrifying (just like parenting).
"Got Your Nose" (and other practical jokes to play on children)
A how-to book of the games we play to keep our children entertained, including:
Please Don't Let Me Break Him
A bedtime book for new parents, all about the panic-stricken first days of belly button nub infection paranoia, feeding guilt (too much? not enough?), diaper hovering (too much poop? not enough?), sleeping trauma (too much? not enough? is he breathing? I'm going to poke him just a little to make sure. Okay, just a little more.). I started this in part as a blog (with a few entries). But I think it would work best with illustrations alternately adorable and horrifying (just like parenting).
"Got Your Nose" (and other practical jokes to play on children)
A how-to book of the games we play to keep our children entertained, including:
- taking off my finger
- taking off my thumb
- making my arm longer
- come here and pull my finger
- where's the ceiling?
- my hands are on backwards!
- winking
- talking without talking (aka "mouthing")
The Recent Futurist
Another barely-started blog. Though I still like the idea of predicting the future through current innovation.
Sad Guy and Acquaintances
My year-and-a-half home with Wyatt was both incredibly rewarding (how many fathers get that opportunity?) and demoralizing (damn social norms). In that time, one of the things I did during naptime was draw a bit. And when I say "draw," I mean make lines, see what they sort of look like, and then turn them into something. I've been doing that for years to make cards (originally with actual paper and colored pencils, believe it or not). But, as with everything, I moved onto the computer, which opened up a world of image manipulation opportunities. My one and only "character" to come out of that was "Sad Guy". And I put his animated adventures in another blog (click the title images to see the animation).
I don't know if I've done justice to any of the ideas here. But, hopefully, I'll have a chance to make good on some of these and more to come.
I don't know if I've done justice to any of the ideas here. But, hopefully, I'll have a chance to make good on some of these and more to come.
Monday, September 27, 2010
New Date, Same Brain
My surgery's been rescheduled for Wednesday morning. We were given that news late this (Monday) morning, and decided to stay in Boston. That wasn't an easy choice, since going home would have meant time with the kids. But it also would have meant disrupting the routine they were starting to establish with my mother-in-law. And re-creating the stress of traveling back down. Though the stress won't have any problem regenerating on its own come tomorrow night.
Anyway, the delay's given us a little time to breathe. It certainly changed the potential tone of our dinner last night (with my parents, wife, brother, and sister) from "last meal" to family reunion. Unfortunately, my brother and sister had to go back to New Jersey this morning (they'll return on Wednesday), but that gives them rare quality time in the car. Jamie and I took a nice walk along the Charles this afternoon (by way of playtime at the Apple Store). We've been watching bad TV. And had a delicious Portuguese meal tonight.
Tomorrow, we'll continue to lay low. No big plans. My hope is simply to enjoy more time with my folks and wife, have lunch with my good friend Jamie Boy (who we also saw at breakfast this morning), possibly see Scott Pilgrim vs. the World (again), and to spend a little more time with you fine people, whoever and wherever you are.
Anyway, the delay's given us a little time to breathe. It certainly changed the potential tone of our dinner last night (with my parents, wife, brother, and sister) from "last meal" to family reunion. Unfortunately, my brother and sister had to go back to New Jersey this morning (they'll return on Wednesday), but that gives them rare quality time in the car. Jamie and I took a nice walk along the Charles this afternoon (by way of playtime at the Apple Store). We've been watching bad TV. And had a delicious Portuguese meal tonight.
Tomorrow, we'll continue to lay low. No big plans. My hope is simply to enjoy more time with my folks and wife, have lunch with my good friend Jamie Boy (who we also saw at breakfast this morning), possibly see Scott Pilgrim vs. the World (again), and to spend a little more time with you fine people, whoever and wherever you are.
Sunday, September 26, 2010
Tomorrow Is Not the Day
Call it a reprieve or a trick or an anti-climax, but it's not looking like tomorrow (Monday) is the day. Jamie and I (and my parents and brother and sister) arrived in Boston just in time to get a call from the hospital. Another case, more emergent than mine (multiple aneurysms which have ruptured) required my doctor's attention. With good reason, he didn't feel that doing two, seven-hour surgeries back to back was such a good idea. Can't argue with that.
I appreciate all the good wishes which have been piling up and hope that you can all redirect them (temporarily) toward the other man whose life has been turned upside down by his own head.
I appreciate all the good wishes which have been piling up and hope that you can all redirect them (temporarily) toward the other man whose life has been turned upside down by his own head.
Monday, September 20, 2010
The First Step is Admitting You Have a Problem
On Friday, I went down to Mass General for "Preadmission Testing". For some reason that sounds like I need to come to terms with something before they'll let me in the hospital. Or, that they needed to do some poking and prodding to make sure I'm ready to say something.
That probing mostly involved documenting my medical history (again), talking to an anesthesiologist, and having various tests performed -- an EKG, blood pressure reading, weight check, blood work, cup filling, and chest x-ray. All pretty uneventful. Or, at least I have no results yet which make those tests eventful. Though I do always find peeing in a cup kind of exilerating. There's that moment when you have to pull the cup away just in the nick of time. It requires split-second timing and steady hands. Don't want to underfill. Don't want to overfill. Don't want to spill. What a rush.
So now that I've been through that testing, I'm ready to admit something -- I'm pretty damn terrified. I'm not saying I don't remain optimistic, and my brave face isn't all facade. But with the clock ticking down to a week from today, reality is definitely sinking in.
I've had the luxury of time. 40 years. But mostly the past three months. I've had time to contemplate what's happening to me, what's happening to my family, to make plans, to take action. But, of course, it always comes down to the wire.
It's also somewhat akin to getting married or having a baby. A lot of energy is put into the preparation for and anticipation of an event. As if the event is the thing that needs the most attention. Not to anger the bridezilla and/or What to Expect When You're Expecting set. The preparation for the event is important. But the work, the real work, comes after. Getting married is easy. Having a baby is relatively easy. Being a successful spouse and parent -- that's damn hard.
On September 27th, I will hopefully be divorced from/deliver a 4 cm giant aneurysm. What comes after, no one knows. On paper it's 1-2 days in the Neurological Intensive Care Unit (the other NICU), then 2-3 days on the regular neuro floor. Recovery? Maybe 6-8 weeks at home. But those are all rough estimates.
On Friday we met with the surgeon one more time before the day, which was good because it cemented the fact that we think he's "the guy". Even when he seemed to think my surgery was scheduled for today. That would have been funny, if it turned out I had less than the week I thought I had. Or that he wasn't available on the 27th. Downright hilarious.
We talked a bit more about the surgery, though there's a ton that's up in the air. And plenty that I don't really care to know until after the fact. I do now know where my scar will be -- right top front, mostly "above the hairline" -- that means less and less every year. I may end up with other scars as well, on my neck and leg; if a bypass is required, they'll take a vessel from my leg and run it from my carotid artery to my brain. Hopefully, on the inside. I'm a little unclear why exactly my leg doesn't need that blood vessel, but he didn't say anything about taking the whole leg. So I'll trust he knows what he's talking about.
I also may have [another] hole in my groin; they'll most likely do another angiogram to make sure blood is flowing to all the places it should be (and none of the places it shouldn't), before putting me completely back together. Makes sense.
Aside from the simple fact that it's brain surgery, the complicated thing(s) about my aneurysm (have I mentioned it's "giant"?) is the clotting and calcification which have formed over time. That means there's a fair amount to get through (aside from my skull and my brain). And that the aneurysm can't simply be clipped and drained. I guess smaller, more fluid ones are accommodating like that -- they'll just collapse. But he'll need to maneuver around and take it apart piece by piece. That's actually best case. The other possibility is that the clotted portions and/or the calcification may have glommed on to smaller blood vessels in my brain. And tearing those while removing the pieces would be bad. Bleeding and/or stroke kind of bad. Fairly localized, which is good. But still the bad side of good.
So if he finds a lot glomming, he would perform the bypass. The idea is that by running the major artery around the aneurysm, they can then remove it without needing to worry about what's stuck to it. Problem there is that he'd need to intentionally cut off the flow of blood to my brain while that was taking place. Pretty much guaranteeing a stroke.
Thus the terror. But, looking on the bright side...hold on. I know I've got it here somewhere...right, there it is: I'm young and otherwise healthy. I've been told that a number of times. So that's nice. Kind of like being carded while buying a bottle of wine at the grocery store. Turning 40 did not make me feel young. Taking merely adequate care of my body through less than moderate exercise and a remotely nutritious diet haven't made me feel healthy. But when it comes to having major surgery, I'm "young and healthy". So I've got that going for me.
Also on the bright side, there aren't any pain receptors in your skull or brain. So if it turns out the only incision is in my head, the pain shouldn't be too bad.
Concerns, for my doctor, me, and for my family, are on neurological damage and the D-word. I'm certainly trying not to focus on that (gotta accentuate the positive), but I have to consider it. It would be unrealistic and somewhat irresponsible to not account for the Dark Side while making my preparations. Got my Will. Got my Living Will. Still need to work on letters to the boys (there's absolutely no generic form to fill out there). Wrapping up/handing off/documenting projects at work (in case I'm unable to do them afterward or need the help of Past Ken to teach Future Ken how to do things). Come to think of it, I should write myself a letter. Then again, I suppose in some ways this blog is that letter.
Really, on the whole, the preparations have been good. I had a great visit with my family in New Jersey. I've had quality time with my family here. I got to see Wyatt off to kindergarten and Gus off to nursery school. Jamie and I have had nights out in New York and on a Maine lake. I have three Happy Hours scheduled for this week. I'm writing here as much as time will allow. So I'm covering my bases, I'm preparing. I'm trying to fulfill my tangible obligations, let my loved ones know how much they mean to me, and get some personal fulfillment to boot. But I'll never be "ready".
Because I know the hard work comes after next Monday, for me and others.
That probing mostly involved documenting my medical history (again), talking to an anesthesiologist, and having various tests performed -- an EKG, blood pressure reading, weight check, blood work, cup filling, and chest x-ray. All pretty uneventful. Or, at least I have no results yet which make those tests eventful. Though I do always find peeing in a cup kind of exilerating. There's that moment when you have to pull the cup away just in the nick of time. It requires split-second timing and steady hands. Don't want to underfill. Don't want to overfill. Don't want to spill. What a rush.
So now that I've been through that testing, I'm ready to admit something -- I'm pretty damn terrified. I'm not saying I don't remain optimistic, and my brave face isn't all facade. But with the clock ticking down to a week from today, reality is definitely sinking in.
I've had the luxury of time. 40 years. But mostly the past three months. I've had time to contemplate what's happening to me, what's happening to my family, to make plans, to take action. But, of course, it always comes down to the wire.
It's also somewhat akin to getting married or having a baby. A lot of energy is put into the preparation for and anticipation of an event. As if the event is the thing that needs the most attention. Not to anger the bridezilla and/or What to Expect When You're Expecting set. The preparation for the event is important. But the work, the real work, comes after. Getting married is easy. Having a baby is relatively easy. Being a successful spouse and parent -- that's damn hard.
On September 27th, I will hopefully be divorced from/deliver a 4 cm giant aneurysm. What comes after, no one knows. On paper it's 1-2 days in the Neurological Intensive Care Unit (the other NICU), then 2-3 days on the regular neuro floor. Recovery? Maybe 6-8 weeks at home. But those are all rough estimates.
On Friday we met with the surgeon one more time before the day, which was good because it cemented the fact that we think he's "the guy". Even when he seemed to think my surgery was scheduled for today. That would have been funny, if it turned out I had less than the week I thought I had. Or that he wasn't available on the 27th. Downright hilarious.
We talked a bit more about the surgery, though there's a ton that's up in the air. And plenty that I don't really care to know until after the fact. I do now know where my scar will be -- right top front, mostly "above the hairline" -- that means less and less every year. I may end up with other scars as well, on my neck and leg; if a bypass is required, they'll take a vessel from my leg and run it from my carotid artery to my brain. Hopefully, on the inside. I'm a little unclear why exactly my leg doesn't need that blood vessel, but he didn't say anything about taking the whole leg. So I'll trust he knows what he's talking about.
I also may have [another] hole in my groin; they'll most likely do another angiogram to make sure blood is flowing to all the places it should be (and none of the places it shouldn't), before putting me completely back together. Makes sense.
Aside from the simple fact that it's brain surgery, the complicated thing(s) about my aneurysm (have I mentioned it's "giant"?) is the clotting and calcification which have formed over time. That means there's a fair amount to get through (aside from my skull and my brain). And that the aneurysm can't simply be clipped and drained. I guess smaller, more fluid ones are accommodating like that -- they'll just collapse. But he'll need to maneuver around and take it apart piece by piece. That's actually best case. The other possibility is that the clotted portions and/or the calcification may have glommed on to smaller blood vessels in my brain. And tearing those while removing the pieces would be bad. Bleeding and/or stroke kind of bad. Fairly localized, which is good. But still the bad side of good.
So if he finds a lot glomming, he would perform the bypass. The idea is that by running the major artery around the aneurysm, they can then remove it without needing to worry about what's stuck to it. Problem there is that he'd need to intentionally cut off the flow of blood to my brain while that was taking place. Pretty much guaranteeing a stroke.
Thus the terror. But, looking on the bright side...hold on. I know I've got it here somewhere...right, there it is: I'm young and otherwise healthy. I've been told that a number of times. So that's nice. Kind of like being carded while buying a bottle of wine at the grocery store. Turning 40 did not make me feel young. Taking merely adequate care of my body through less than moderate exercise and a remotely nutritious diet haven't made me feel healthy. But when it comes to having major surgery, I'm "young and healthy". So I've got that going for me.
Also on the bright side, there aren't any pain receptors in your skull or brain. So if it turns out the only incision is in my head, the pain shouldn't be too bad.
Concerns, for my doctor, me, and for my family, are on neurological damage and the D-word. I'm certainly trying not to focus on that (gotta accentuate the positive), but I have to consider it. It would be unrealistic and somewhat irresponsible to not account for the Dark Side while making my preparations. Got my Will. Got my Living Will. Still need to work on letters to the boys (there's absolutely no generic form to fill out there). Wrapping up/handing off/documenting projects at work (in case I'm unable to do them afterward or need the help of Past Ken to teach Future Ken how to do things). Come to think of it, I should write myself a letter. Then again, I suppose in some ways this blog is that letter.
Really, on the whole, the preparations have been good. I had a great visit with my family in New Jersey. I've had quality time with my family here. I got to see Wyatt off to kindergarten and Gus off to nursery school. Jamie and I have had nights out in New York and on a Maine lake. I have three Happy Hours scheduled for this week. I'm writing here as much as time will allow. So I'm covering my bases, I'm preparing. I'm trying to fulfill my tangible obligations, let my loved ones know how much they mean to me, and get some personal fulfillment to boot. But I'll never be "ready".
Because I know the hard work comes after next Monday, for me and others.
Friday, September 17, 2010
Better Living Through Geekuitry
One of the first things I did after getting my diagnosis was shop. Specifically, shop for gadgets. I'm not really a bleeding edge, early adopter sort of guy. Unless it's free. And it's rarely free. But I felt like I couldn't wait anymore for certain thingamabobs I'd been coveting.
Because, as we all know, "you can't take it with you". Which either means you have to grab it now and enjoy it while you can or that you shouldn't bother getting it in the first place, because -- in the grand scheme -- material possessions are trivial. I opted to enjoy trivial things while I can.
So back in July I bought an iPod Touch and a Blu-ray DVD player that also streams media from my home computer and/or from Netflix. Yes, if I'd waited until September, I could have had the 4th Generation iPod Touch with Retina display and two cameras. But have I mentioned that I wasn't really in a "place" to wait around? (I'm only now discovering that what I actually purchased was a 2nd Generation Touch in a 3rd Generation package. Hmmmm. Well, this news makes statements below that much sweeter.)
On the whole, both purchases have served their purpose. My gadgets feed my need for desensitization through distraction. The Touch is a fine mini-computer which allows me to be in constant contact with the Twitterverse, Blogosphere, Facebookalaxy, E-mailgam, Textonomy, and all other parts of the Interweb. I spend more time trolling the depths of Netflix's library of Instant content than actually watching anything. But the point is that I could watch it, from the comfort of my family room, on my big TV (purchased just pre-diagnosis, mind you). Actually, for years, I've had a device that could broadcast content from my computer to my TV, but you know what they say: Once you go Hi-Def, analog will leave you beref[t]... and subsequently prevent a return to what previously seemed perfectly acceptable.
Oh, and did I mention that I can also watch Netflix on my iTouch? And search and update my Instant Queue from said Touch? And, oh, the many hours I've frittered away sampling [mostly free] apps. I've found some great games (for example, Doodle Bomb and Cat Physics) as well as completely useless tools (e.g. Coin Flip, Flashlight). And jailbreaking my Touch to free up more features has proved extremely satisfying (especially now, as I said, I've realized Apple sold me an old product in a new box). And now it's even legal.
Of course, more apps mean more progress bars to watch as I download and update. I love updates. It's like like getting something for nothing. And progress bars themselves have a built-in sense of achievement, as you watch, well, "progress" taking place right before your very eyes. Unless you're more of a progress-bar-is-half-empty sort of person. Or, if the progress bar is poorly designed and simply shows activity. I want to know percentage done! Fill me up with your progress, don't just chase your tail! Sorry. That's a pet peeve of mine.
So that's one or two or ten ways I've been passing the time through gadgetry. Has it improved my quality of life? Hard to say. But it's certainly kept my mind off my mind.
Because, as we all know, "you can't take it with you". Which either means you have to grab it now and enjoy it while you can or that you shouldn't bother getting it in the first place, because -- in the grand scheme -- material possessions are trivial. I opted to enjoy trivial things while I can.
So back in July I bought an iPod Touch and a Blu-ray DVD player that also streams media from my home computer and/or from Netflix. Yes, if I'd waited until September, I could have had the 4th Generation iPod Touch with Retina display and two cameras. But have I mentioned that I wasn't really in a "place" to wait around? (I'm only now discovering that what I actually purchased was a 2nd Generation Touch in a 3rd Generation package. Hmmmm. Well, this news makes statements below that much sweeter.)
On the whole, both purchases have served their purpose. My gadgets feed my need for desensitization through distraction. The Touch is a fine mini-computer which allows me to be in constant contact with the Twitterverse, Blogosphere, Facebookalaxy, E-mailgam, Textonomy, and all other parts of the Interweb. I spend more time trolling the depths of Netflix's library of Instant content than actually watching anything. But the point is that I could watch it, from the comfort of my family room, on my big TV (purchased just pre-diagnosis, mind you). Actually, for years, I've had a device that could broadcast content from my computer to my TV, but you know what they say: Once you go Hi-Def, analog will leave you beref[t]... and subsequently prevent a return to what previously seemed perfectly acceptable.
Oh, and did I mention that I can also watch Netflix on my iTouch? And search and update my Instant Queue from said Touch? And, oh, the many hours I've frittered away sampling [mostly free] apps. I've found some great games (for example, Doodle Bomb and Cat Physics) as well as completely useless tools (e.g. Coin Flip, Flashlight). And jailbreaking my Touch to free up more features has proved extremely satisfying (especially now, as I said, I've realized Apple sold me an old product in a new box). And now it's even legal.
Of course, more apps mean more progress bars to watch as I download and update. I love updates. It's like like getting something for nothing. And progress bars themselves have a built-in sense of achievement, as you watch, well, "progress" taking place right before your very eyes. Unless you're more of a progress-bar-is-half-empty sort of person. Or, if the progress bar is poorly designed and simply shows activity. I want to know percentage done! Fill me up with your progress, don't just chase your tail! Sorry. That's a pet peeve of mine.
So that's one or two or ten ways I've been passing the time through gadgetry. Has it improved my quality of life? Hard to say. But it's certainly kept my mind off my mind.
Thursday, September 02, 2010
Looking for Mr. (or Ms.) Right
I'm up to three second opinions. Or maybe four first opinions. Actually, I just have the one opinion, four times.
I suppose, in many ways, that's easiest. At first, I was a little worried about getting second opinions. I was happy (and I use that term loosely; I would certainly prefer to be seeing no doctors) with the doctor I originally found. Really, the doctor I was originally given (with rave confirmations, mind you). So bringing "second opinions" into the mix just sounded complicated and confusing. In the end, I need to trust someone. Second opinions felt too much like second guessing. Or putting myself in a place where I would have to choose between various surgical options. I feel vastly unqualified to do that.
And right now I have no place in my life for regret. You may have noticed my Totally Achievable Bucket List. Everything on it is already crossed off. In fact, I won't add anything to it until I've done it. Mostly, until I've done it again. Because I'm focused on what I'm doing, not what I've done or haven't done. For some reason that seems to mostly center around comfort foods.
Anyway, my quest for a resolution to my little problem has looked like this:
Opinion 1: The first doctor, despite being identified as "the guy" by everyone I'd talked to, took himself out of the running for lack of experience with my particular type of aneurysm (have I mentioned that it's "giant"?).
Opinion 2: A friend of a friend referred me to a doctor in Texas. He was never really an option for performing the surgery; I'd like to be somewhat close to home. But he was very helpful in providing guidance (via e-mail and phone).
Opinion 3: Another neurosurgeon recently joined the practice in Maine and was certainly game to perform the operation. This simply speaks to the delusions we all have about age, but he just seemed too young. I'd say he's about my age. And I certainly wouldn't want me doing the surgery. We liked him a lot, and he has an intellectual interest in my type of case, but he doesn't have the level of experience I'd like. He's done "5 or 6".
Opinion 4: Again, people of have said he's "the guy". He's experienced (lost count on how many he's done), older than me (maybe early-mid-50s) but not so old that his hands are shaking. And he's got the radiology lab at Massachusetts General Hospital tricked out to take special Cat Scans with some computer-generated images. So I had yet another (hopefully my final, for now) CT to show in yet more detail the inner workings of my head. I'll put some more pictures below. As usual, they are not for the faint of heart but pretty fascinating. Ain't technology grand?
The one opinion from all of them is that the best option for me is full-on brain surgery (vs. the endovascular kind). What occurs during the procedure(s) will depend in large part on what they find once they get in there: they can clamp, they can clip and remove, they can bypass. In all likelihood, it will be a combination. An intra-cranial pu pu platter, if you will.
As of today, all of this is scheduled to happen on Monday, September 27th, at Massachusetts General Hospital in Boston. The doctor down there (No. 4 above) offered the best combination of experience, reputation, bed-side manner, and facility (meaning MGH as an institution). Honestly, I haven't had a bad experience with any of my doctors. And No. 4 is even going to let No. 3 observe. My hope is that No. 3 and No. 1 will handle my follow-up care in Maine.
So, now I have a doctor and I have a date. This is both comforting and nerve wracking. I'll get into that next time (hopefully sooner than this time). It's time for less medical mumbo jumbo and more philosophical jumbo mumbo.
Now look at the crazy pictures (remember, left is right and right is left, except in the last image. That one's computer generated. Or, possibly the spaghetti I had for lunch that day.)
I suppose, in many ways, that's easiest. At first, I was a little worried about getting second opinions. I was happy (and I use that term loosely; I would certainly prefer to be seeing no doctors) with the doctor I originally found. Really, the doctor I was originally given (with rave confirmations, mind you). So bringing "second opinions" into the mix just sounded complicated and confusing. In the end, I need to trust someone. Second opinions felt too much like second guessing. Or putting myself in a place where I would have to choose between various surgical options. I feel vastly unqualified to do that.
And right now I have no place in my life for regret. You may have noticed my Totally Achievable Bucket List. Everything on it is already crossed off. In fact, I won't add anything to it until I've done it. Mostly, until I've done it again. Because I'm focused on what I'm doing, not what I've done or haven't done. For some reason that seems to mostly center around comfort foods.
Anyway, my quest for a resolution to my little problem has looked like this:
Opinion 1: The first doctor, despite being identified as "the guy" by everyone I'd talked to, took himself out of the running for lack of experience with my particular type of aneurysm (have I mentioned that it's "giant"?).
Opinion 2: A friend of a friend referred me to a doctor in Texas. He was never really an option for performing the surgery; I'd like to be somewhat close to home. But he was very helpful in providing guidance (via e-mail and phone).
Opinion 3: Another neurosurgeon recently joined the practice in Maine and was certainly game to perform the operation. This simply speaks to the delusions we all have about age, but he just seemed too young. I'd say he's about my age. And I certainly wouldn't want me doing the surgery. We liked him a lot, and he has an intellectual interest in my type of case, but he doesn't have the level of experience I'd like. He's done "5 or 6".
Opinion 4: Again, people of have said he's "the guy". He's experienced (lost count on how many he's done), older than me (maybe early-mid-50s) but not so old that his hands are shaking. And he's got the radiology lab at Massachusetts General Hospital tricked out to take special Cat Scans with some computer-generated images. So I had yet another (hopefully my final, for now) CT to show in yet more detail the inner workings of my head. I'll put some more pictures below. As usual, they are not for the faint of heart but pretty fascinating. Ain't technology grand?
The one opinion from all of them is that the best option for me is full-on brain surgery (vs. the endovascular kind). What occurs during the procedure(s) will depend in large part on what they find once they get in there: they can clamp, they can clip and remove, they can bypass. In all likelihood, it will be a combination. An intra-cranial pu pu platter, if you will.
As of today, all of this is scheduled to happen on Monday, September 27th, at Massachusetts General Hospital in Boston. The doctor down there (No. 4 above) offered the best combination of experience, reputation, bed-side manner, and facility (meaning MGH as an institution). Honestly, I haven't had a bad experience with any of my doctors. And No. 4 is even going to let No. 3 observe. My hope is that No. 3 and No. 1 will handle my follow-up care in Maine.
So, now I have a doctor and I have a date. This is both comforting and nerve wracking. I'll get into that next time (hopefully sooner than this time). It's time for less medical mumbo jumbo and more philosophical jumbo mumbo.
Now look at the crazy pictures (remember, left is right and right is left, except in the last image. That one's computer generated. Or, possibly the spaghetti I had for lunch that day.)
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