Blog
Round three
We just got back from meeting with the neurosurgeon. He’s prescribing yet another round of steroids. Basically, my brain is having trouble dealing with the major changes caused by the procedure. He told us that the impact of the fistula was one of the most extensive he’d seen - a lot of veins in my brain were affected by it. He’s still pretty sure he got it all, but I’m going to have another arteriogram in six months to make sure.
My brain is having to deal with some major changes and it’s not happy. The steroids reduce the swelling which helps with the headaches. In the images he showed us, before and after, you could see a serious decrease in blood flow in the affected areas. The difference was drastic. I could also see the area that he glued.
If I’m still having headaches after the this third round, I’m going to schedule an appointment with a neurologist to develop a strategy to deal with the pain. He said it’s possible that I’ll be dealing with these for an extended period of time, possibly the rest of my life.
Today in the waiting room with all of the sounds, people talking, coughing, sneezing, phones ringing, etc. was nothing short of torture.
Brain Update
Due to continuing headaches, I was prescribed a second round of steroids. I’m on day three of the second round and I’m still battling some crazy piercing headaches, like needles stabbing through my brain. I’ve been trying to wean myself off of the painkillers, since I was almost out of them, but they just prescribed another round.
The neurosurgeon told me I would be dealing with headaches, but I don’t think it’s typical that they persist this long after the procedure.
I’m really starting to feel weird about not leaving the house in two weeks. I’ve been reading a lot of books and comics, when I’m able to concentrate long enough. I’ve also gotten caught up on Dr. Who. Galifrey Lives!
Don’t tell HR, but I’ve been helping my coworkers a little bit via email. Twitter and Facebook are also helping me not feel totally isolated from the world. I’m hoping I’ll be able to rejoin society soon!
I want to thank Maura and my mom and everyone that’s brought treats by for keeping me from gnawing on table legs; the steroids make me ravenous. I’m sure I’ll have gained about 20lbs by the time I’m feeling better.
Planned Convalecence
I’ve been trying to write an update to what’s been going on the last week, but it’s been hard to concentrate long enough to be coherent. I don’t intend for this to come across as whining. I’m just want to document and share my experience.
The steroids that I’m on are some of the strongest available and I started on a pretty high dose. I’m over the halfway point tapering off of them, but my body is still flooded with them. I’ve only had one good night’s sleep and that was only six hours. The rest of the nights I’ve spent either lying in bed wide awake with my racing thoughts or trying to read. Half the time, while doing either one, I’m in a dreamy/hallucinating state. My days have been spent in much the same way, trying to read or watch a show, but unable to concentrate on anything. It took me three days to finally find a book that I found interesting enough to try to finish and I know my brain was inserting things into the stories that weren’t actually there. I’m also taking painkillers which don’t help my mental state all that much either. I’ve been an emotional wreck, flipping from highs to lows rapidly. I’ve basically been a catatonic psychotic junkie, waiting until the next round of drugs.
Maura is a saint to have put up with me this week, I know I haven’t been the easiest to be around. At times, even the smallest noise makes my eardrums reverberate, which triggers an earthquake of pain and misery in my head. When the neighbor was having her driveway replaced last weekend, I was ready for murder.
At this point, I’m trying to cut back on the pain medication but if I wait too long to take it, my head really starts hurting. The doctor mentioned the possibility that I might need another round of the steroids to make sure to stop any swelling, and I’m beginning to suspect that it might happen. I’ve sent them a message to see what to do next and I hope to hear from them tomorrow.
I’ve also been feeling really guilty about missing work. I know it’s been a hard week for my coworkers and I feel bad not being there to help. I’m not going to push myself either though. I wouldn’t be much help even if I were there right now.
Thank you, everyone, for your emails, notes, and support through this. I may not be able to respond right away, but it really helps.
Feeling pretty floaty
I am pretty drugged up on painkillers and steroids to help my brain to deal with swelling as it comes to terms with what was done to it, so I may not make much sense. Please forgive me. I just wanted to post a small update.
I spent just over 24 hours in the hospital. I was able to get up and around pretty quickly, so they sent me home before lunch on Friday. The procedure itself took a bit longer than expected, I was in there for about four hours. The neurosurgeon ended inserting tubes into both legs to make sure they got all of the fistula. He told us that he’s 98% sure he got it all. I’ll have a follow up visit with him in a couple of weeks and then another arteriogram in six months to make sure it’s all gone. This really is the best possible news.
The most noticeable thing for me is the pulsing sound that I’ve been hearing for about five years is completely gone. It’s a little hard to get used to it not being there, especially at night.
I basically I feel like I have the worst hangover of all time. I didn’t sleep much at all the night before the surgery and I haven’t really slept much in the last five days, which I’m sure it due in part to the steroids.
Yesterday the neighbor a couple houses down from us decided to have her driveway ripped out by a couple of noisy dudes and a bobcat. Even with earplugs in, I could hear the rumble of the engine, the crashing of the cement into the dump truck, all of the the yelling. I was ready to murder someone. I know it’s not their fault, they have no idea. But jeez, of all days they could have picked.
Less than a week until endovascular embolization
In less than a week I will have superglue injected into my brain. It’s been a rough month of waiting, dampening the joy of the first days Spring and our birthdays. I would like to thank everyone who has offered their thoughts and prayers and help. I am very grateful to all of you. Particularly my wonderful wife and awesome coworkers who have had to deal with my black cloud daily. They have helped me try to stay positive and with the heavy lifting.
If you’re curious, here’s a video illustrating the procedure:
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Scheduled
My procedure has been scheduled for March 27th. I really wish it was going to be sooner; I’d like to get past this particular portion of life. It was the earliest day they had available, however. I’ve been pretty busy at work lately and for once I don’t mind so much. It helps me keep my mind off things. The weekends are not so easy, I have time to sit and worry. On the plus side, I don’t feel quite as guilty sitting around playing computer games all day. They are a great distraction! I played through both Portal games again and started playing Borderlands 2.
Bamboo in my Brain
We just met with the neurosurgeon at KU Med to look at the images they shot during the angiogram. He had told me after the procedure and again today that he was correct in his initial assessment, it is a dural arteriovenous fistula. Today he went into a little more detail about the procedure. Basically, they’ll send a catheter up my leg into the veins in my brain near the fistula and inject glue to seal them off. If they are not able get everywhere they need to they might have to go a different route (the other side of my brain). Thankfully, I’ll be under for this procedure. They really need to be able to seal off all of the fistula otherwise it will slowly come back. I compared it to the four year fight we had with the bamboo in our backyard. If you don’t kill it all, it will keep coming back. That stuff is tenacious!
I will have to stay at the hospital for a day or two afterwards. Yay hospital food…
He did talk about this procedure in terms of it being a cure, but he also mentioned that we’ll have to monitor it to make sure it stays cured. They’ll be imaging during the procedure, he said the results can be seen immediately.
I am very lucky that this was discovered before it caused more damage. If the veins do give out, they can cause brain damage and even death depending on the amount of bleeding. Most people that have this condition don’t find out that they have it until after it starts bleeding out.
It’s serious, scary stuff and I’ve been feeling simultaneously sad and angry about it. Please have patience with me if I seem overly moody. I’ve been trying to keep busy to keep my mind off of the situation, but I’m also finding stupid little funny things that help me cope too. I really hope I don’t get an annoying song stuck in my head during the procedure, it might be permanent! I’ve got something on my mind, literally! Yeah yeah, I won’t quit my day job.
I should hear from scheduling soon; the doctor is expecting that I should be able to get in by early March, which is’t even a week away.
Brain Update
The Arteriogram was yesterday. It went well but it wasn’t the most pleasant experience. I now have a hole in my upper leg/groin area that hurt like a @#%(!.
The day was very long. Originally we were supposed to be there at 11:00 to sign in and prep for a 12:00 procedure. It got bumped back several hours due to an emergency. The scheduling nurse came out to talk to us and offered to let us walk around and she’d call when it was close to time for us to come back. We live five minutes from the hospital, so we just went home for a little over an hour. I watched an episode of Dr. Who and caught up on some email.
We got the call and went back to wait some more and then finally went to the prep room where I changed into one of the wonderful backless robes and got all plugged in. We waited some more for the room to become available and then I was finally being wheeled into the operating room. I met some very nice folks who explained everything clearly and even gave me a nice bikini line! She told me a story about an 80 year old gentleman who she had prepped a while ago. He was obviously very nervous and uncomfortable and while she was shaving him, he asked why they had to do both sides. She replied that they might have to switch entry points and besides his wife had entered him into a bikini contest! He laughed and was much more talkative and comfortable after that.
The procedure itself was weird. I was awake with very mild sedation because they wanted to have activity going on in my brain (yeah, I know what your’e thinking now…) They ran a very small tube up into my neck where they would inject dye that would make it’s way into my brain as they were shooting x-rays. Every time they injected the dye, I had to be completely still, with my eyes closed; no breathing, no swallowing, no moving. My neurosurgeon was the one running the procedure and he would repeat that, mantra-like every time. It was almost hypnotic. The dye made my face feel like it was on fire. I could feel it in the back of my throat and at the bottom of my ears but it spread to my cheeks and nose a little. It was kind of like a wasabi rush, very uncomfortable for a few almost unbearable seconds then gone. During a couple of the shots I could see what looked like a million shooting stars. He also said they might make me feel dizzy, but that was not terribly accurate; it was more like the entire world twisted in incomprehensible ways and I was at the center of it.
After the procedure, I had to lie flat for two hours to make sure there was no bleeding or excessing swelling. Never in my life have I had so many different people check my groin so many times. We came home around 7:45 and ordered a pizza. I hadn’t eaten anything in twenty-four hours at that point; I was so hungry! I’m very glad I took a couple of days off from work, I’m feeling okay, but it’s very sore and I’m supposed to be off my feet as much as possible. Walking around is okay, but bending over kills.
I’ll meet with the neurosurgeon next Wednesday to go over the findings and figure out what’s next. He did say after the procedure that he was correct in his initial assessment; it IS a dural arteriovenous fistula. He said it definitely needs to be taken care of soon. I do feel like I’m in very good hands with him. Besides the obvious risks of the fistula, I am really looking forward to not hearing this damn pulsing in my ear any more.
What's going on in my Brain or Somthing on My Mind...
As some of you may know, a little over a year ago I had a mass removed from the crown of my skull. Initially my physician and the general surgeon that he referred me to thought it was just a mass of fatty tissue. It had been there for a couple of years and never really bothered me.
I was on the table and prepped, Maura sitting nearby. The surgeon had the needle with the local anesthetic to my scalp when he realized that his fingers were bouncing with my pulse - there was blood flow in the mass. He quickly pulled the needle away, and explained to Maura and I that he couldn’t proceed with the procedure without a scan and a proper operating room. If he had inserted the needle the mass probably would have started bleeding uncontrollably.
Within a few days I was admitted to the hospital to have the mass removed. The procedure and recovery went well. In my follow up with the surgeon, he told me that what he had removed was a kind of disgusting mass of veins and he told us that it was an arteriovenous malformation (AVM). At about the same time that I had started to notice the lump, I had also noticed that I could hear my pulse very loudly in my ear, much louder in my left ear. With that diagnosis, it made sense that I was hearing it and it should have gone away after removal. The surgeon told me that I would need to talk to my physician if it didn’t go away.
Well, it didn’t go away. It might have faded for a while, or that might have been wishful thinking on my part. But it was definitely back.
About a month ago I talked to my physician about it and he decided to go ahead and do an MRI to see what else might be going on.
After talking to my physician about the results of the scan, it was evident there was something else inside my skull. He referred me to a neurosurgeon, who suggested that I talk to someone at KU Med. This week I finally got in to see a neurosurgeon there.
The good news: I do have a brain, I saw pictures! I almost asked them to email me some of the images, but I didn’t. They were pretty cool looking. It’s really surreal to actually see the inside of your head. I’ll ask them next time I’m there. I know many of you will need to see proof…
So, it turns out it’s not an AVM. The neurosurgeon thinks it’s a dural arteriovenous fistula which is similar to an AVM but not congenital. Blood is traveling through veins that were not designed to handle the pressure. They do the best they can, but they can only take so much so they start dumping the blood out in other places. The thing that I had removed was part of the fistula. It turns out that removing it was probably a bad idea. I’m pretty lucky that it didn’t make things worse inside my skull. If left untreated, it will most likely cause major problems.
I’ll be going in for an angiogram in the next couple of weeks which will provide a very clear 3D image of the area. I’ll be awake for this test, which won’t be fun, but the surgeon assures me that it’s not as bad as it sounds. Plus, I’ll have some sort of drugs to relax me.
After the angiogram, I will most likely have a non-surgical procedure in which they inject glue to fill the blood vessels, through a long tube going into my brain - similar the the angiogram but I’ll be knocked out. It will probably be followed by a focused radiation treatment. The surgeon said that surgery is necessary only 1% of the time in cases like this.
The only symptoms that I’m aware of right now is the pulsing in my left ear. He did several quick tests today to see if anything else was off, and he seemed satisfied that nothing major was wrong yet. As to how it happened, he thinks it could be from severely high blood pressure, which I have dealt with in the past as a result of my thyroid issues.
Small update: The angiogram has been scheduled for next Monday.
Blue Gallery
I am very honored to have been asked by Kelly and David Kuhn at Blue Gallery to help them with a complete redesign of their website. After many months of work, I am proud to say that it’s now live! This was my first site working with WordPress which is a very different way of working for me. I’ll be honest, there was definitely a love/hate thing going on with it for a while. It’s a powerful web publishing system with all sorts of support out there and tons of useful plugins, but it just wasn’t what I was used to. I have to admit though, once I finished Blue Gallery’s site, I recreated my whole site using WordPress.
Anyway, please go visit the site and better yet, go to the gallery - tell Stella I said hi.
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Blue Gallery’s new website[/caption]
A Machine for Loving
In the words of Iggy Pop
Two weeks after my arrival, Fox died Just after sunset I was stretched out on the bed when he approached and tried painfully to jump up He wagged his tail nervously.
Since the beginning he hadn’t touched his bowl once He had lost a lot of weight I helped him to settle on my lap For a few seconds, he looked at me with a curious mixture of exhaustion and apology Then, calmed, he closed his eyes Two minutes later he gave out his last breath.
I buried him beside the residence at the western extremity of the land surrounded by the protective fence next to his predecessors During the night, a rapid transport from the Central City dropped off an identical dog They knew the codes and how to work the barrier I didn’t have to get up to greet them A small white and ginger mongrel came toward me wagging its tail I gestured to him He jumped on the bed and stretched out beside me.
Love is simple to define but it seldom happens in the series of beings Through these dogs we pay homage to love And to its possibility.
What is a dog but a machine for loving You introduce him to a human being, giving him the mission to love And however ugly, perverse, deformed or stupid this human being might be The dog loves him. The dog loves him.
Rest in Peace, Sweet Ben
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Bon Iver at the Uptown with Kathleen Edwards
I love seeing bands I like perform live. Some of the best concerts are ones in which the band does something a little different than what you’ve heard before. Bon Iver played at the Uptown last night and they were surprisingly loud and flexible with their music. One of my favorite performances of the evening was an excellent Björk cover.
The opening act, Kathleen Edwards, was great too. Beautiful voice, great lyricism, and between songs, a mouth like a sailor. She came across as a very real person.
For more pictures of the concert, check out my flickr gallery: Here
Introducing My Next Tattoo
I got my first tattoo on my first wedding anniversary with Maura. I’ve been trying to decide what to do for my second the moment I walked out the door of Exile Tattoo. I’ve toyed with various ideas - cephalopods, skulls/bones, mechanical parts, etc. and couldn’t really decide on anything. I also knew I wanted to have one of the many talented artists I know create it, but everything was up in the air until the Two Headed Beast approached me about coding their website.
The Two Headed Beast is Chris and Mirna Stubbs, two very talented artists, a designer (Chris), and an illustrator (Mirna). I told them I would code their site in trade for a tattoo design. Chris had designed some tattoos for himself and I have to admit that I was a little jealous. I explained my initial to Chris and after some design and critique back and forth, this is my next tattoo:
Yesterday we met with Chet at Mercy Seat and I have a tentative date set to start inking! He seems excited to work on Chris' designs, yesterday he said “It’s not worth doing if it’s not a challenge”. It should take between six to eight hours in at least two sessions to complete.
In an email today, Chris sent me some fundraising ideas to fund our tattoos. They cracked me up and I had to add a few of my own! He’s getting one soon as well, after having designed mine, he went to work on an idea he’s been mulling around for a while for himself - Chris' Tattoo. They’re both pretty big and very detailed, they’re not going to be cheap.
His list:
- temporary lawn service: "grass for tats" (I call weed wacking)
- donate blood. it will be symbolic of the needle in the arm thing.
- 1st Fridays we claim a corner and give crash courses in web design/ photoshop on our laptops.
- shoe shine stand
- donate sperm... okay no
- a non-violent bank robbery achieved through the annoyance of begging
- counterfeit with bills that have subliminally printed the phrase "thanks for the tat honey"
- we sell advertising space on our bodies and get logos,etc tattooed in various places. Price depends on size and location...
- scooter delivery service, delivering small items, not scooters
- sell body parts, obviously not ones we’re having tattooed. Do we really need two of everything?
- sell our hair for wigs and paint brushes, it’s big money and if there’s one thing I have in abundance, it’s hair!
Spicy Coconut Shrimp Soup
Maura’s had a pretty bad cold all week, so although we had reservations for a nice Valentine’s Day dinner on Saturday night, we cancelled them and stayed in. Instead we made an incredibly tasty soup. It’s very quick and easy, but so full of flavor! A few of you asked for the recipe after I tweeted about it so here you go! By the way, this recipe is from Cooking Light Annual Recipes 2009 cookbook - everything we’ve made from these books has been super tasty and good for you too!
Spicy Coconut Shrimp Soup
Ingredients
- 3 1/2 cups fat-free, less-sodium chicken broth
- 1 cup sliced mushrooms
- 1/4 cup finely chopped red bell pepper
- 1 tablespoon light brown sugar
- 1 tablespoon fish sauce
- 1/2 teaspoon grated peeled fresh ginger
- 1/4 teaspoon red curry paste (use more if you like spicy! I used 1/2 tsp. and it still wasn't terribly spicy)
- 1 cup light coconut milk
- 1 pound large shrimp, peeled and deveined
- 1/4 cup thinly sliced green onions
- 2 tablespoons thinly sliced fresh basil
- 2 tablespoons fresh lime juice
Preparation
- Combine first 7 ingredients in a large saucepan over medium-high heat; bring to a boil.
- Cover, reduce heat, and simmer 10 minutes.
- Stir in coconut milk; cook 2 minutes or until hot.
- Add shrimp to pan; cook 3 minutes or until shrimp are done.
- Remove pan from heat; stir in onions, basil, and juice.
Blogging, Scooting, etc.
I know, I know. Yet another post about post (in)frequency. I'll make no excuses; I've neglected this blog for several months. I guess it's a combination of Twitter, free time, and Winter blahs. Strangely enough, now that I'm starting to get motivated again, I'm also about to get really busy with the web dev thing. I have two bids due by the end of the week, one site about to ramp up to the final stages, and another site coming up very soon. Not to mention updates to current sites getting our OWN site up and running. I'm excited, honored, and nervous about all of this. I still can't believe I actually get paid to do this stuff, it started out as a hobby.
In other news, I've finally joined the exciting world of scooters. I bought a 2002 Genuine Stella. Here she is:
I also bought a bright orange helmet:
I've been wanting one for a while. I don't work far from home and it seems a little wasteful to drive a car every day. Beside, it's a blast! I'm having a hard time parking it when I get to work, I just want to keep riding! The second day I had it I rode it out to my mom's in Prairie Village, down State Line. I guess I took to it like a fish IN water - I can't believe I waited this long to get one! The Stella is based on the older style of scooters, all metal - very solid with a manual transmission and a 150cc engine. She'll get up to 70mph or so.
Resolutions
It's the beginning of a new year; a chance to start fresh. All of the bad habits from last year can stay in the past. Whatever. There's actually only been one year in my entire life that I actually followed through with all of my resolutions. My friend and I set some very specific, achievable goals and held each other accountable for them. At first I wasn't even going to bother with any, I usually don't, but as I thought about what I would want to achieve this year, I managed to come up with a few that I could deal with. So here they are, in no particulat order:
- Develop a thicker skin - I resolve not to let people get to me and make my life miserable, even (especially) the stupid people.
- 100 pushups - My wife and I have tried this program a couple of times, but some thing kills our momentum and we stop. Not this time, this time I resolve to trudge through the arms feeling like jelly phase and eventually reach 100.
- Second tattoo - I already have the designs of the next two chosen, I just have to get someone to draw the third one. I resolve to finally get my second tattoo.
That's it for now. They're nothing big, but they are very specific and definitely achievable.
Money
Very cool video, featuring all sorts of faves:
Maura's New Studio
I'd like to present to you the newest addition to the Fowler/Cluthe home:
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We’ve been spending most of our free time working on Maura’s new studio and it’s all been worth it! In fact I took a week of vacation to help with the siding. We’re so excited to see it near completion. There are only a few more small details and it’ll be ready for Maura to move back in!
I've been obsessively taking pictures of the whole process. You can see them all at my Studio Renovation Gallery. Thanks to our friend Mike Mastin and his crew, Mike, Pete, Chris, Randy, and everyone else that helped. They do great work if you need anything done to your house!
This is the First Day of the Rest of Your Life
I remember going shopping for my mom for Mother's Day one day long ago - my brother and I picked out a plaque which read "This is the First Day of the Rest of Your Life!" Of course, neither of us had the slightest clue what it meant but it sure sounded significant. Over the years, that phrase has stuck in my head. It just pops up every once in a while and I think about what it means. It has always sounded kind of silly and contrite to me, but last night it popped into my head again.
Today is the first day of the rest of our lives. Today, for the first time in a very long time, I can actually say I'm proud to be an American. Today al whole lot of Americans voiced their opinion on how they think conservatives have been running the country for the last eight years. All I can remember since first caring anything about politics is a sense of cynicism and hopelessness. Today I have hope. I woke up this morning feeling like a huge weight had been lifted.
Obama will certainly have his work cut out for him, especially with that new puppy running around the White House!
