Merry Christmas...

Tonight I spend my time working on a custom Christmas music mix for work. They use it at Christmas specific events through this time of the year. (Tree Lightings, Christmas Music Concerts, ect...) As I was working on this, I realized that this time that I spend working on this mix is the only time during the last couple years that I have been able to sit down and enjoy the music of the season. The rest of the time I am so focused on what's happening with the station that I don't have time to. This is a very busy time of year for me at work. Not only do I have to fill in around work for everyone that is out and about on vacations and such, we have to start planning out the next year of the station. So I sit here and listen to the entire 2 hour mix real time (normally after I finish a mix I speed through it to just hear the transitions to make sure it sounds fluid) so that I can have my bit of holiday music joy before I have to focus on reality again.

I hate that this year I have had to do this at night after I have left the office for the day, but what can I do about that...

I know, considering that it is almost 11pm and I am still healing from the surgery, I should be asleep. My attitude with that is... it's fucking pointless to try to sleep. Since I have tapered off the prednisone I have been even more restless. Now I don't know if it has something to do with that or the fact that I can not find a comfortable position to sleep in since surgery, but it is getting recockulous. Even the Ambien that they prescribed me doesn't work anymore. (and I am already on the max dose of it)

I know that everyone is telling me that I need to stay positive like I have been, but what if I don't want to anymore? It's fucking EXHAUSTING to stay this positive all the time when you hurt either from a chronic illness or surgery or both and still work full time, still am active outside the house, and have 2 young children running around constantly wanting the attention that they deserve to get from their dad.

Can I have a weekend... Just one... Where I am allowed to be negative? One where I can complain about how much I hurt and how exhausted something simple as doing the laundry makes me? One where I can have people not expect the world out of me? One where I can play the "I'm Sick" card and not feel guilty about it? Where I can call in to work sick and not feel guilty that I shorted them or my family? Just one?

This post took a turn you didn't expect, didn't it.....

Well until I touchdown in Fantasy land... I guess it's time to slap the smile back on my face and get to it again... :D

Well that's enough complaining from me. Complaining about your life gets you nowhere...

I am going to go back to listening to my Christmas music... Try not to spoil the little joy I get out of this every year.

Until I see you all again.....

It's a really grey day out there today

Today is definately a grey kind of day. Woke up late... had to run for the bus... took my rain jacket but forgot to make sure I had another layer underneath it... got blamed for something that wasn't my fault and couldn't have fixed it even if I had caught it in time... It's a grey day.

Life had been interesting since surgery for me. Life started to return to normal... but then again is there such a thing as normal for me? I returned to work full time 2 weeks post op. My doctor wasn't too happy about that, but what can I say I'm stubborn.(there seems to be no damage done for doing that) The wound from the surgery is healing alright I guess. I am a little sick of seeing this Giant opening in my abs and tired of not being able to find a comfortable position to sleep in. If it doesn't hurt my back, it hurts my abs, no matter what I do. So I am forced to take the lesser of 2 evils and decide what gets to hurt that night. It's a little annoying to say the least.

I am gettin use to living with the ostomy. I think the bigger restriction for me right now is the wound. I wish it would heal already. Life hasn't really changed outside that. It's actually a lot nicer for me. I am not in a constant search for a bathroom. I also think less about what I am eating and just am eating more! Being a foodie at heart, it really sucked not being able to eat most things for the longest time! I would still create magnificent dishes for my family, I was just unable to eat my own creations. (I did the same thing when I was on TPN, I would cook for my family then go get hooked up for the night as they enjoyed it)

(Quick Break.... actually have work to do.... WTH is up with that....)

There are a few things that I am having to get use to living with this bag on my abs. A lot of my formal clothes don't look quite right now. I tend to wear very tailored shirts, and it looks like I have a bit of a weird looking belly. I think I will have to learn to manipulate it a bit to make these shirts look proper again! I love my clothes and don't want to have to go find different ones. Another good note is that I have put on 13 pounds since surgery! I am on my way to getting back to the shape I once was! I should put pictures up of me just out of High School. I felt the best about how I looked back then. If I could get even close to that again I would be happy! I will be training hard for the GYGIG rides soon so that will help get the muscle tone back, now just to put the weight back on.

(Sorry.... Another Work break.... trying to write this today during my breaks)

Work is an interesting creature. I am use to this, but just when things start to get into a routine, that blows up and we start all over again. That's alright by me... to a point. I love for things to constantly be changing, but my body doesn't like it so much. Hell it's taken a couple years to get use to waking up when I do, and half the time I still wake up late.

My kids are growing up way too quickly! Elijah is running around starting to try and form words. His favorite thing to do now is imitate what mommy and daddy do. I will have to upload a video I have of him grabbing one of our empty cups, lifting it like he was drinking from it, and as he puts it down he goes "ahhh"! It is the cutest thing ever! Amber is doing great in school. She started at a new school this year in a harder program and is doing so much better than she was. I think getting her away from all her old friends helped that out too. We have been blessed with 2 really good kids. Now let's hope that the third will be the same.

Yes... I did just say Third...

Erin is preggo with our 3rd (and final) child. Estimated due date at this point is June 16th, but I am sure that will change by a couple days in the future. This does mean that there is no chance in hell that the wife will let me go to NY this year for the ride... Which sucks because I really wanted to make it to NY this year. Oh well... there still is the Midwest and I will still be involved with the NY ride. Someone has to keep an eye on the Twitter feed and keep those tweets coming! I am going to try and convince the board to let me update the Facebook too while on the ride along with the website. I have some great ideas for this year! Now to get them all down on paper and ready to present.

With The Holidays just around the corner, I hope all of you that read this have a very Happy Holidays. This is the time of year for me to be insane, except for about 48 hours when I am with the family having an enjoyable meal and plesent conversation. So if you don't hear from me anytime soon, it's because I have misplaced my mind in the mess that is my office... I will get back to you as soon as I find it again.

Much Love to you all!

Bring the World Cup to Seattle and the US!

I just added a widget to the sidebar of this blog. It is to help bring the Beautiful game to Seattle and more importantly the US. Please take a minute to sign the petition, help bring litterally WORLD CLASS Soccer to the US once again!

Why can't I keep myself out of there....

So here's a quick update on what's happened over the last 48 hours... (I'll get back to updating the last post in a bit, but I want to update you all on the recent events)

Yesterday I had a nurse come by the house to check up on me and the PICC line that I had. They have been coming by a couple times a week since it was placed to check up on me and change dressings so it was suppose to be a routine visit. While she was taking my vitals, I had a temperature of 102.8 and my resting heart rate was somewhere in the 130's. The nurse immediately called my surgeon to let him know and see what he wanted to do. I had been feeling just fine up until just a couple hours earlier, so this was all new to me. My doctor called me back and told me to get my butt back to the hospital, and that a bed was waiting for me. When I got there, they took an xray to see that the PICC was still in place and that there was nothing funky going on with my lungs. Once that came back, they took blood culutres and did a bunch of other tests to try and find an infection and also rule out the flu. While those were out, the resident surgeon came and saw me (luckly it was one that was in on my surgery, so he knew what was happening already). He saw some drainage out of the surgery incision and said he needed to open it up. So he pulled the staples out of that area and opened it up. There was a little bit of material that he removed and he opened it up a bit more just to make sure that he got it all. So they packed the wound with gause and taped me up for the night. Overnight my fever broke and my heart rate came down. All of the cultures and tests that they did came back negative, so they think that little bit of suspect material was the culprit. They were going to keep me through the weekend if I was uncomfortable with taking care of the open wound, but since taking care of that is no different than when I had to do it for my face last year, I told them that if I could, I would rather be at home if it was no different to them. They discharged me after teaching me again how to care for the wound.

So now I am home again... Hopefully this time I can stay away from the hospital for more than a couple days.
Thank you all for your thoughts and prayers! I appreciate them all!

Think of a title for this later....

So I have attempted to write this post for the past 3 days now... and I don't know if it is I don't want to or I am not sure of what to write... but I am going to get you all updated on what has happened since Thrusday morning by the time breakfast shows up or else I will wait to eat till this is done!
The examination under anestesia went well. They found that some areas of my sigmoid colon and rectum were not as diseased as they originally thought, so they didn't need to cut as much, if any, from there. There were still questions about some sections of my small bowel that would only be answered when they opened me up and got a real good look at what's happening. Although I didn't like the idea of just "winging it" so to speak, I really trust my doctors and if they told me they needed me to jump off the roof before the surgery I'd do it.
So I went home that afternoon and started getting things ready for my surgery. I wanted to nap all afternoon, but my son was having none of that! I think he knew it was the last time daddy was going to be able to wrestle with him for a while and wanted to get his fix in while he still could.
Emotion finally hit me Thursday night. I had been letting it build and build, just telling my self that this wasn't anything and that I was making a bigger deal out of this than it was. Well I was just lying to myself. This is a huge thing and I wasn't dealing with the emotional side enough. I broke down pretty much the whole night as my family slept.
Friday Morning started pretty much Thursday Night for me. Didn't sleep at all. Didn't think that I would, but I was hoping. Got to the hospital, and things started happening. Took me up to surgery where I met my ET nurse and she marked me for my ostomy. Then it was getting into gowns and getting me into bed so that everyone could talk to me and get me prepped. After signing consents and such, I laid back and rested, waiting for things to start happening and that's all I remember... I must have closed my eyes and they pushed the sedative to relax me and then off we went!
I don't remember much of Friday night. I know that my family was all here when I got back to my room around 5pm. Aparently I was cracking jokes from my first consiousness. My brother, who is just as bad with his phone as I am, was sending out a mass txt to let the family know I was out of surgery and doing alright. I looked at him and said something along the lines of "dude, for once in your life will you put down the phone" he then informed me that he was just updating the family on what was happening so I told him "well, I guess that's ok..." I don't remember any of this. Oh and aparently I was dragging all of my words out for no aparent reason... Wow I was messed up! Bad thing was I was in a TON of pain, that I do remember. I know it was hard for my family to see me like that, because they could see the pain on my face. Didn't sleep much that night, was hitting the pain button constantly. It really sucked! Didn't look at my wounds till the next day. Don't know why I didn't want to, but I didn't. Didn't think I could handle looking at it that night.

I have a lot more to add to this... but this has taken a long time to write and I my body is telling me to sleep... so I am going to do that now and come back to this in a bit. have a wonderful day

Thursday Morning... Let's Get this over with

I'm sorry that I have not update this in a while now... every time that I go to start, I end up either having work to do or I get distracted by my family and just never get back to doing what I started. Also I really haven't felt a whole lot like writing about what's been happening...



I mean, I accept what's happening and I am ready for them to get the bad sections of my colon out and place the ostomy, but I haven't really taken the time to go thru my head and sort out the emotional side of this. Logic and such, I am ready and willing. Emotionally, I don't know what I am thinking or how I feel about this. I know that this is nothing to be ashamed of and that in the end if it makes me healthy again, who gives a fuck about what anyone else thinks about it.



I really am having a hard time with this. I have been keeping my mind distracted so I didn't have to deal with it, but now with no more work and the procedures to begin here in just a couple hours, it makes it impossible to not address it anymore.



A little later this morning I am heading into my surgeons office so they can do an "Examination under Anestesia" so they can make a specific surgical plan. We know from all the other tests most of what needs to happen, but there are some questions that doctor has and doing this exam will allow him to be able to definiatively tell me what he's going to do. Gotta say that I am not looking forward to getting blown up like a baloon and have a camera poked around inside of me. A friend suggested I sell tickets or the pictures as a fundraiser. If I thought someone would acutally pay for it, I totally would! I ain't to proud to whore myself out for a great cause!


Well I need to go get in the shower and get this day started already. I will get on here later today and update you all on what's happening. I love you all and appreciate all the positive thoughts and prayers that have been coming my way! They are a source of inspiration and strength for me!

Cont...

I have more questions than answers. I really don't like that feeling. Got more appointments to see people and have more procedures done. They didn't do the endoscope when they did my colonoscopy, so I have to go have that done on Thursday. They want to do it because I have been having pain in an area that they can't explain. They are hoping that this will help shed some more light on what's happening. I am not so sure... but I think I am getting a little more impatient with what's happening as time goes on and I still don't have answers. I see the surgeons on Monday in their office. I hope that they can tell me what's happening and what the plan is for this whole scenario. I still don't know what they plan on taking out, what type of ostomy they are planning, how long they expect before they go in, how much downtime I will have afterward, how this will affect my life, NOTHING!

It's slightly frustrating......

Untill then, I continue on this Clear Liquid only diet, WHICH IS TORTURE!!! I actually have been feening sooo hard for actual food lately, that I have taken to locking myself in my bedroom when the family is eating ANYTHING. I mean, the other night my wife heated some frozen pizza up (something that I usually have absolutely no problem staying away from) and I was craving it so badily. I think that I just miss food! I love to cook and eat and I can't do the latter right now.

It definately adds to the frustration.....

Friday I found myself back in the ER again... this time it was a flu. I went to bed Thursday night feeling just fine. When I woke up I had a gnarly cough and a temp up over 101. Called my doctors and they all told me to get my ass in there. Sure enough I caught the flu. They took 5 sets of labs from me!!! 3 from my PICC line, and 2 others from a second IV they tapped! I swear they wanted all of my blood! They pushed a couple litres of fluid, gave me some Tamiflu and sent me on my way. I spent most of the weekend in my bed trying to rest, but one of the side effects of the pain meds that I am on is I get jittery and hyper and have a need to do SOMETHING physical. Makes for interesting nights and such... finally get out of pain and have the need to go do something... my wife can't figure me out. I am doing much better today. My temp is gone and I only have a slight cough and body aches. Hopefully I won't be feeling any of this by Wednesday.

Sick on top of sick... adds more to the frustration......

Both of my kids birthday's are in September along with mine, so yesterday we had a party for them. What was I thinking letting my 11yr old have a bunch of friends over while getting over a flu and being fed out of a tube in my arm? I must have been on some great stuff when I said yes to that! All in all it was a great day for them and they had a blast, I was just completely DECIMATED by the end of the day. I had to take a nap after they all left. Watching my kids tear into their presents was awesome though. I also enjoyed watching Elijah tear into his first cake. Tradition in our family, the first bday the kid gets their own cake to tear into. We definately have some great pictures of what he did to his! Except for completely draining me, it was a great day

Helped me to forget about the frustrations for a while....

Now I am at work, waiting around for the last of my database to compile so I can finish my work for the day. Although I really didn't want to come in today, I did get a lot done. It's easy to get a lot done though when you are left to yourself with a to do list and a computer. I think I had a highly productive day, even made some calls to set up appointments and such. Unfortunately my to do list seems longer at the end of this day than it was when I walked into the building this morning. Oh well, that's life I guess.

I wish I could say that I am alright with everything that's happening. I wish I could say that I have made my peace with the situation and that I am ready for it all to be over so I can move on. I mean I want this all to be over and I want to move on with my life, but I am still very conflicted about everything that's going to happen and how it's all going to be happening and what's going to happen to by body.

All I can do is keep my head up, keep thinking positive thoughts, and keep praying that answers to all my questions are around the corner.

Untill then.... I will keep breathing... and keep trying not to cry... but I gotta say... it gets harder as the days go on living like this

Much love to you all

1 week later... More questions arise

Hey everyone, Sorry that I took off once I left the hospital. I have had a lot on my mind as you all could probably tell. I have attempted to put down what I have to say a couple times now, and I keep getting interrupted. Life... what are you going to do about it....

What has happened in the last week... Where to get started....

I have successfully spent the last week on my TPN. With this, I have been allowed only clear fluids + gummy bears. That's it. I must say its been hella hard to sit around and watch others munch down on whatever it is that's around while I am stuck drinking broth and eating gummy bears. If I was 10 years youngers, I would have thought 7up and gummy bears would have been Heavenly for a diet. Then I grew up and learned to appreciate food. I have to say the worst was last weekend when I took the family over to the grandparents house for dinner. I was happy to see everyone and to be out of the house and visiting people, but Frank does some of the most AMAZING food in his smoker, and he did a whole ham. That was a bit painfull to watch people eat that and not be able to enjoy it. Since then I have been better about my jealousy. Being on the TPN is kinda a trip to me. It takes 12 hours a day to infuse everything that I need for the day. They tell me that I could injest nothing else and be just fine. That's kinda weird to think about when you are up and mobile. It's kinda been cool to get use to though. The kids get a little weird seeing daddy hooked up with a tube in his arm half the night.

The family has been amazing through all of this. I know it can't be easy on them seeing daddy in a lot of pain or my wife knowing that I am unable to help out around here as much as I want to. They have been a constant source of energy for me! I know that all that I am dealing with right now is to get me into a place where I will be around for years to come to help them out through everything.

I am starting to fade for the night. I will get more down in the morning.

Life is an interesting mistress... I hope to be around long enough to figure her out!

Thursday Morning... I get to go home today!!!

Sorry for the lack of updates yesterday after the morning... I have had a lot on my mind as you all could probably tell. 24 hours later I have had some time to come to grips with the reality of what needs to happen and here's what I know.

Surgery is happening. It's now a matter of how invasive they want to go and how much they need to remove. I am heading home today as there is nothing else that they are going to do with me still here for now, and I would be a whole lot more comfortable at my house. I have to be back in the clinic with my new Colorectal team in about 10 days to do some exploration to see just how bad things are so they can make a definitive decision on what is going to be removed and what type of ostomy I will end up with in the end. From there it will be scheduling the surgery and getting it done. We hope to have me through surgery and recovering by October, giving me a chance to eat like a normal person by Thanksgiving. It sucks that this is the reason that I will be missing the Get Your Guts In Gear Ride in the Midwest, but I know that all my fellow riders and crew members will understand why I am gone and will do their best to make it all happen knowing that I am supporting them from Seattle to the best of my abilities.

I have come to grips with all of this. I still have a lot of questions about my new lifestyle going forward, and I am sure that a lot of people will be getting a lot of emails in the coming days as I am sitting around my house thinking about this, but I am so fortunate to have such a wonderful support system around me with a lot of people that know a lot about what's happening with me and what to expect going forward.

As soon as I know more about what's going to happen in the next couple weeks, I will let you all know. Untill then I thank each and every one of you. You have all been a source of inspiration and strength to me! I really don't think that I would be able to get through this without all of you.

Much love to you all!

Wednesday Morning... I have more doctors now...

It's now 4:45am and I am awake again. I even took my ambien last night just before midnight and I still didn't get any sleep last night. I guess that I just had too much on my mind last night to really be able to sleep. It really sucks that I don't sleep at night around here. I mean I think I get more sleep over the course of a day while in the hospital, just a whole lot less at night when nobody is here. I watched CaddyShack last night on a loop out of shear laziness. Then again every time that I woke up I was in a different part of the movie, just watched it way out of order is all.

So... It's now time for me to update you all on what was talked about last night. Shortly after 5pm, my GI came in to talk to me about what was found in my colon. I kept asking him to release tape so I can turn it into a Discovery Channel special and make some money off of it, but he wasn't too kean on that... LOL. The good, My disease isn't as widespread as we originally thought. It appears that my small bowel is healing and responding to the drug therapy, which is a good thing. The worst of the bad, the lowest part of my Colon may be beyond repair, including parts of my rectum. It explains a lot of the pain that I have been having lately. Knowing now what the extent of everything is... this is what my GI is recommending, pending consultation of the latest doctors to be added to the team, a couple ColoRectal Surgeons.

1) We continue with the Bowel Rest in hopes that it works to calm down the infected bowel to a point it will respond to medications and I can return to life as usual with everything intact.
2) We resection the bowel, cutting out the really bad parts in hopes that the few mild/moderate places have a chance to heal and keeping "normal" bowel operation in tact. This would also include an extended Bowel Rest with the PICC line still in tact. The fear with this is that there are sections that are the most diseased that can not be removed and that it would just allow the disease to spread quickly through the non diseased portions.
3) We do an Ileostomy and open ourselves to 2 options with this
A) Leave the Large Bowel in my body and in tack. This would allow for an extended period that we could rest it and give us a possibility of reconnecting it at a future date (year+ down the line if it responds and the disease goes into ressession. The down side is that leaving the diseased bowel in there may lead to the disease spreading farther into the bowels or even jumping into other parts of my body (i.e. the RA they fear I have developed in my back or worse).
B) We pull the entire Large Bowel while we are in there. The fear of a resection is that I have a very diseased part of my Rectum, and a resection would reconnect to that diseased section and just cause the disease to spread to the healthy sections quicker. Pulling the entire Colon would, in essence, pull the majority and worse of the disease out of my body, giving me the best shot at recovery.

It's a lot to think about right now. I have had a chance recently to talk with quiet a few people about their ostomies, and I am not really scared about the prospects of living with an Ostomy, but there is a lot to think about.

I hate being in hospitals! Beyond the fact that they never make you feel like you are getting better, I have to spend a lot of time away from Family and Friends. I know in the end this is all suppose to be for the better... but it gets hard to keep that outlook from here when you feel good but still can't just do something simple like get up and walk around. At least I can stll stay connected to the world through the internet and my phone, and I have had a lot of people swing by and visit. I am so fortunate to have such a great family!

Well I am going to go this morning... I have a lot of questions that I want to find answers to.

Thank you all for your thoughts and prayers through this most difficult time in my life. Your Strength has helped me keep my strength and positive attitude around me.

Much Love to you all!

Tuesday Afternoon... Tests are done for now

Sorry that it took me all day to really feel up to typing this again. This morning I was in for a colonoscopy. That sedation really knocks me out. Once the doctor started pushing the meds, I was feeling all "happy" and don't remeber a thing after that. They tell me that it went well and the pain that I am feeling is from some biopsies that they took. I don't know much more about it than that at this point, as my doctor hasn't been around today yet. I expected it though... he squeezed the colonoscopy in before his slammed clinical day. He should be around sometime soon though to let me know what is what.

Outside that, it's been a really chill day. the PICC line is the only one that I have left in my arm... and it will be there for a couple weeks now. They plan of keeping me "fed" through it for a while.

Well my doctor just showed up to talk.... I will update you all on what he says in a bit.

Much Love to you all

Tuesday Morning... I have been up way too long already

Good morning people! This is a great day for me I guess. Well last night I wasn't able to sleep much with the nurses coming in and out every hour or so to check my PICC line and the drips. I was hoping to get a bit more sleep last night, but it is what it is. I will sleep when they sedate me for the Colonoscopy. My doctor promised me that I will be good and out when he does it! Last night after my last post my doctor stopped by to chat and let me know what the plan for today is. Hopefully we know more about just how bad my disease is in my bowels and what we need to do to control it going forward.

I hope that, no matter what, I can feel better soon!

For the longest time I fought the idea of surgery. I saw it as taking away something that I needed to live. I have come to see, through the help of my friends and a lot of research, that this is not true. I know now that I can have a productive life without my colon. I might even be able to live a better life than I have had in the past 5 years+.

I will beat this! You all are helping me do it and I LOVE YOU ALL for it!

I have to go now... time to go become my own Discovery Channel Special!

Will update you when I know more!

Monday Evening... The tests for the day are through

So it's not 430pm and the tests for the day are through. I have gotten the CT's done and the PICC line is placed. The xrays have been taken to see that it's in its proper place... and now I wait. Nobody is around me right now... they are all on their way though. It's really weird to think that I have a tube running through my arm into my chest. So So So So yeah. Clear liquids only for me for quite some time now... I hope that I get use to it.

On the list tonight... COLONOSCOPY PREP! Yay for me! I hope that it goes quickly. I think that I am done writing for now... I need to sleep or something...

Monday Afternoon... The plan for today is known

So I got here this morning around 730am... It's currently around 140pm and I just found out the entire plan for the day. Currently I am drinking an INSANE amount of contrast so they can do a CT on my entire torso. When I say insane, I really mean it. I have 3 450ml bottles that I have to drink in 30 minutes. And this stuff SUCKS! It's a cross between lemon lime jello, club soda, and chalk. I am hoping that this is all worth it in the end and they can actually see something when they get in there and look. I'm just glad that it's CT's and not MRI's. I hate being in the enclosed machines! Not that I am clostrophobic or anything... I just don't like the sounds of the magnets swirling around my head. It's all worth it in the end though if I get answers and relief.

When I get back from that... they are going to put a PICC line in my arm. From this they are going to give me nurtition for the next couple weeks as they attempt to give my bowels a rest. They will also use this line to pull all my labs and push all my meds for the next little bit from. It kinda scares me because it's a pretty long line they have to feed into my arm so that it sits in one of the main arteries next to my heart. That's a little scary to think about. I know that they do this all the time and all that jazz... but this is the first time that I will be having this done. I have a lot of questions that I will be asking when the nurse comes to do it.

Now time to go to CT.... See you all in a bit