Well it has been since May that I blogged about what is going on in my World. As you know I hit a snag in my come back from this nasty event in my life. I have reached just about rock bottom. I went on medical leave due to a constant pain in my shoulder, back, chest and ribs. The I was dealing with chemo brain and believe me that was so frustrating to deal with. I still have the effects of chemo brain in some small capacity. I forget small things here and there. I physically I am still all sorts of messed up but I fell and screwed myself up in all different spots but it took away a lot of the pain in my shoulder. It was the darnest thing. I hurt really really bad in my chest area though. I think I messed up the stitches. As some of you know I was released from my job and lost my insurance so this has put a huge wrench into all moving parts known as my health care and income. To put it this way......I am broke and have bills suh-weet. I am progressing though but the physical aspect of anything I do has diminished so much I have had to file for disability by the recommendation of my doctors. It sucks going through the motions but I gotta do what I gotta do.
I'll blog more soon
Thursday, July 30, 2009
Friday, May 15, 2009
A lot going on
Well I must say this since I have been getting a lot of emails and phone calls from people. Since December I have been noticing a lot of issues mentally. It has been a hard going for me in the focusing and concentrating department. I didn't really notice the memory part of things until a couple of months later when I was having a hard time retaining anything I had previously learned. I wrote it off as being locked up with doctors and laying in hospital beds causing me to need a jump start of sorts. Well it wasn't happening. I knew something was wrong but I didn't know what. So I had Dr.Maddaus hook me up with a shrink and he diagnosed me with something called chemo brain. I'll just do a quick explanation for you all. Chemo brain is basically a cloudiness or loss of short term memory due to chemotherapy doses. Not everyone gets it. It depends upon which chemo and how harsh it is. I had never heard of this until now and either which way I still would have taken the chemo doses. When you are faced with a 5% chance to survive you do everything you can. Believe me I knew the doses were extremely harsh and bad for my heart but that didn't stop me. It didn't prevent me from taking the steroids to counter act some of the effects. All of these factors have in some way weighed in with my loss of short term memory, focus and concentration. It came to a point when I just couldn't multi-task very well nor do daily tasks that are simple. I just couldn't remember. I was on the verge of a complete and total mental breakdown until I saw the shrink. Now I have to go get tested to find out the extent of things. It is a 4 hour test that is all about memory, interviews and problem solving. The real problem is that I can't get in to one of them until June 11th in Minneapolis of July 15th in Madison. So for the time being I have moved into my parents basement to clear my head and get away from things. I'm not supposed to do a lot of things but pretty much do little things such as puzzles and games, read, garden, and anything simple. The less I have going on the better. For how busy I was in Minneapolis I would forget everything that happened the previous day and my mind would just make me frustrated. So moving into my folks and living extremely simple has helped out a little bit so far. To help with everything I carry around a notebook, calendar and my confuser. I write down simple notes of everything in my notebook and my calendar. it is seems kinda dumb at times but it has helped in my memory and focusing. This condition is something that can last a year or 5 years depending on how my body reacts and my progress on keeping things simple. I just want people to stay with me on this. Believe me I get extremely frustrated and disappointed if I forget something and it effects others. That is the reason I kept it hidden until around March and April.
The other reason I had to leave work and everyone else is my left shoulder. My shoulder is a bit better the burning sensations have subsided quite a bit but I still have the 2 spots where it feels like I am being stabbed. The doctors had me take a PET scan and that turned up nothing. Then they had me go get an MRI since angiosarcoma (the cancer I had) turns up better on those and nothing showed up. The real good news out of everything is that I am cancer free. I cried after hearing that because that made everything official despite the fact that there is an 80% chance over the two years following that it will return. I think my time in hell has passed or I'm atleast due. To be honest with everyone there is a spot in the back of my mind that causes me to be scared everyday that it will return in the future. Dr.Robiner (the shrink) told me that is normal for people in my situation but it causes me too much anxiety and fear. He basically told to go enjoy live and focus on other aspects of things I enjoy. Anyways back to my shoulder. Dr.Maddaus seems to think it is all nerve related and directly from the surgery. I can remember standing in front of a mirror in my hospital room looking at my chest and crying over everything. It is hard to explain to everyone but standing there and seeing what happen and learning that things were worse than we thought I really turned out to be the luckiest person on Earth. The one thing I have told everyone is that the actual fight isn't as bad as the aftermath of it. I have never been one to worry about my physical characteristics since I've always been a husky kid but having half my chest missing and the scars is pretty nuts. I am always overly conscious of it. Add that in with my mental frustration with myself it brings me to be overly disappointed and sad at times. I mean I could not function well at a job I enjoyed doing and showing up for. Physically it came to a point where I simply couldn't lift anything anymore. I let them down and I let myself down. I am just hoping these test help me out on the right path. Everything I have been doing with the notebook and calendar is what they have suggested so I just beat them to the punch. It has helped because I have become disorganized to a point I have never been before.
In other news I was asked to speak at the American Cancer Societies Relay For Life on the University of Minnesota's campus. No, I did not wear my Bucky clothes as much as I wanted to. I was asked to speak on behalf of the Hope Lodge. The people that work at the Hope Lodge are so nice and extremely helpful. They helped me through a lot when I stayed there so I had couldn't tell them no in the end. I was so nervous because I have never spoke to more than 75 people before. The room had about 3,000 people in it so I was extremely nervous. I winged the entire thing too. Apparently I was quite funny and good. I shot from the hip and the heart. I didn't really mention a whole lot about my cancer and travels besides I had it twice and had a 5% chance to survive this last one and beat it. I was there to speak about the Hope Lodge and how great it is. I did that and the other survivors were telling me how I should have talked about my cancer and my response was,"Why do I want to depress people?" You can't tell me that isn't true. I had a lot of people telling me how much they enjoy my speech. The other survivor talked and rambled on to a huge amount of crickets. Nice guy but he was so materialistic and me me me in his speech. Either way I was honored and want to do it again. Maybe a bit more prepared though.
Well I also totaled my truck on my birthday (feb.21st) I came out of the parking ramp on to 394 in Minneapolis and lost the whole back end on a patch of ice. My mom was screaming at me thinking I was dinking around but I wasn't. The front end went right into a guard rail and I got t-boned. So as a birthday gift to myself I went and bought an 07 Ford Mustang. It is Orange with black stripes down the middle all leather interior. Very fun car. I will have to get something different for winter but whatever. For now I have a fun car to ease my mind :o)
The doctors also suggested I take a vacation so my friend Noah and I took off for San Francisco and Portland. Well we drove through a blizzard and nearly died in Nebraska and Wyoming. I think our near death total due to ice was about 50 times. hahaha no joke! I wound up catching the flu pretty bad on the way out there but it wasn't going to stop me. We stopped in Reno, NV and placed bets on the Packers and Brewers to win it all. Then we left and headed to San Fran. I love that city. It is so much fun and there is something around every corner. We went to two Brewers Giants games and wound up meeting Billy Hall at a hotel bar. We walked all over it was so much fun despite the misty rain. Golden Gate Bridge is quite the structure. My old friend Ryan came down for a day and hung out with us. It was awesome I hadn't seen him in a while. Then we went to Portland and we both saw a friend of ours it was fun. I so want to go back to Portland again too. The trip cleared my mind of everything for a while it was great. Then I got back to Minnesota and lost my mind in its craziness. I highly suggest people visit San Francisco you can get cheap hotel rooms. I think ours was 40 bucks a night. Everything else is not cheap but worth it.
My friend Tim also got married and it was a really classy wedding and reception. I felt completely out of place for obvious reasons. Either way I am really happy for Tim and Erin they were obviously meant for each other.
Well that is what is going on in my life right now. So all I ask is bear with my confusion and forgetfulness. I am being lined up with the best specialists in the area to try and help get everything back to normal so I can be me again. I really didn't want to hide this from people but it is kind of humiliating. I am also on the verge of carrying a pocket Thesaurus and Dictionary. So put that in perspective. OK I think I have rambled on way too much.
Also I have tickets to see this guy this summer. I am so stoked for it! You guys have no idea my obsession. The Legend himself
Here is some chemo brain info if interested:
ACS page
and
Mayo Clinic
and finally the official site
chemo brain official page
The other reason I had to leave work and everyone else is my left shoulder. My shoulder is a bit better the burning sensations have subsided quite a bit but I still have the 2 spots where it feels like I am being stabbed. The doctors had me take a PET scan and that turned up nothing. Then they had me go get an MRI since angiosarcoma (the cancer I had) turns up better on those and nothing showed up. The real good news out of everything is that I am cancer free. I cried after hearing that because that made everything official despite the fact that there is an 80% chance over the two years following that it will return. I think my time in hell has passed or I'm atleast due. To be honest with everyone there is a spot in the back of my mind that causes me to be scared everyday that it will return in the future. Dr.Robiner (the shrink) told me that is normal for people in my situation but it causes me too much anxiety and fear. He basically told to go enjoy live and focus on other aspects of things I enjoy. Anyways back to my shoulder. Dr.Maddaus seems to think it is all nerve related and directly from the surgery. I can remember standing in front of a mirror in my hospital room looking at my chest and crying over everything. It is hard to explain to everyone but standing there and seeing what happen and learning that things were worse than we thought I really turned out to be the luckiest person on Earth. The one thing I have told everyone is that the actual fight isn't as bad as the aftermath of it. I have never been one to worry about my physical characteristics since I've always been a husky kid but having half my chest missing and the scars is pretty nuts. I am always overly conscious of it. Add that in with my mental frustration with myself it brings me to be overly disappointed and sad at times. I mean I could not function well at a job I enjoyed doing and showing up for. Physically it came to a point where I simply couldn't lift anything anymore. I let them down and I let myself down. I am just hoping these test help me out on the right path. Everything I have been doing with the notebook and calendar is what they have suggested so I just beat them to the punch. It has helped because I have become disorganized to a point I have never been before.
In other news I was asked to speak at the American Cancer Societies Relay For Life on the University of Minnesota's campus. No, I did not wear my Bucky clothes as much as I wanted to. I was asked to speak on behalf of the Hope Lodge. The people that work at the Hope Lodge are so nice and extremely helpful. They helped me through a lot when I stayed there so I had couldn't tell them no in the end. I was so nervous because I have never spoke to more than 75 people before. The room had about 3,000 people in it so I was extremely nervous. I winged the entire thing too. Apparently I was quite funny and good. I shot from the hip and the heart. I didn't really mention a whole lot about my cancer and travels besides I had it twice and had a 5% chance to survive this last one and beat it. I was there to speak about the Hope Lodge and how great it is. I did that and the other survivors were telling me how I should have talked about my cancer and my response was,"Why do I want to depress people?" You can't tell me that isn't true. I had a lot of people telling me how much they enjoy my speech. The other survivor talked and rambled on to a huge amount of crickets. Nice guy but he was so materialistic and me me me in his speech. Either way I was honored and want to do it again. Maybe a bit more prepared though.
Well I also totaled my truck on my birthday (feb.21st) I came out of the parking ramp on to 394 in Minneapolis and lost the whole back end on a patch of ice. My mom was screaming at me thinking I was dinking around but I wasn't. The front end went right into a guard rail and I got t-boned. So as a birthday gift to myself I went and bought an 07 Ford Mustang. It is Orange with black stripes down the middle all leather interior. Very fun car. I will have to get something different for winter but whatever. For now I have a fun car to ease my mind :o)
The doctors also suggested I take a vacation so my friend Noah and I took off for San Francisco and Portland. Well we drove through a blizzard and nearly died in Nebraska and Wyoming. I think our near death total due to ice was about 50 times. hahaha no joke! I wound up catching the flu pretty bad on the way out there but it wasn't going to stop me. We stopped in Reno, NV and placed bets on the Packers and Brewers to win it all. Then we left and headed to San Fran. I love that city. It is so much fun and there is something around every corner. We went to two Brewers Giants games and wound up meeting Billy Hall at a hotel bar. We walked all over it was so much fun despite the misty rain. Golden Gate Bridge is quite the structure. My old friend Ryan came down for a day and hung out with us. It was awesome I hadn't seen him in a while. Then we went to Portland and we both saw a friend of ours it was fun. I so want to go back to Portland again too. The trip cleared my mind of everything for a while it was great. Then I got back to Minnesota and lost my mind in its craziness. I highly suggest people visit San Francisco you can get cheap hotel rooms. I think ours was 40 bucks a night. Everything else is not cheap but worth it.
My friend Tim also got married and it was a really classy wedding and reception. I felt completely out of place for obvious reasons. Either way I am really happy for Tim and Erin they were obviously meant for each other.
Well that is what is going on in my life right now. So all I ask is bear with my confusion and forgetfulness. I am being lined up with the best specialists in the area to try and help get everything back to normal so I can be me again. I really didn't want to hide this from people but it is kind of humiliating. I am also on the verge of carrying a pocket Thesaurus and Dictionary. So put that in perspective. OK I think I have rambled on way too much.
Also I have tickets to see this guy this summer. I am so stoked for it! You guys have no idea my obsession. The Legend himself
Here is some chemo brain info if interested:
ACS page
and
Mayo Clinic
and finally the official site
chemo brain official page
Thursday, May 14, 2009
sweet tunes just enjoy
This last song is by a band called Machine Head. Robert Flynn thier vocalist is someone I had the pleasure to meet once and it was an altering one. I learned a lot from the guy and I will say he is an idol and speaks the truth. Listen to his speech and you will understand my disgust of hardcore conservatives and their narrow minds
Sunday, March 29, 2009
been a while
Let me blog now! I just wanted to make a post about the music I found when I was in the teen stage that made me who I am. There are a lot and people won't understand unless they have a keen ear to music and understand that in some cases noise is music.
Monday, January 26, 2009
Better late than never
Hello everyone,
I know it has been a while but I have been super busy with all of my projects, work, and driving. I just kept forgetting to update this thing. With that said here I am again talking to whom ever is paying attention. Things have been good in my world for the most part. I am still getting used to the different types of feeling in my chest because it is numb and will be for a long time. Unfortunately, I am feeling a sharp pain in my shoulder blade that is pretty mild compared to the chest wall last May. Still it scares the hell out of me. So I pushed up my March 3rd appointment to February 20th. I will get the CT scan done then and then get the results on Feb. 24th. I think I am going to keep Dr. Hegeman in Madison as one of my opinions. I am also going to be going back to Dr.Leach as my primary oncologist. Dr.Leach was my oncologist the first time I had cancer back in 01. I am still working out quite a bit but the weight is coming back and in the form of muscle for the most part. Well that is all I have for now. I will post more later this week.
I know it has been a while but I have been super busy with all of my projects, work, and driving. I just kept forgetting to update this thing. With that said here I am again talking to whom ever is paying attention. Things have been good in my world for the most part. I am still getting used to the different types of feeling in my chest because it is numb and will be for a long time. Unfortunately, I am feeling a sharp pain in my shoulder blade that is pretty mild compared to the chest wall last May. Still it scares the hell out of me. So I pushed up my March 3rd appointment to February 20th. I will get the CT scan done then and then get the results on Feb. 24th. I think I am going to keep Dr. Hegeman in Madison as one of my opinions. I am also going to be going back to Dr.Leach as my primary oncologist. Dr.Leach was my oncologist the first time I had cancer back in 01. I am still working out quite a bit but the weight is coming back and in the form of muscle for the most part. Well that is all I have for now. I will post more later this week.
Monday, November 24, 2008
What the future holds.
I am currently booking the next Rock Cancer Out Benefit that I host up here in the cities. Things are looking pretty good two bands have confirmed to the bill and they are pretty freaking sweet. The Hunting Club and Dallas Orbiter are the two confirms. I am currently waiting to hear back from two other to try and have the bill rounded out and get the fliers together and promote this thing around town.
The other news is that next week Tuesday I go into the doctor to get a chest x-ray not a CAT scan done. Then I see the Dr.Maddaus who was the Thoracic surgeon. He is going to have me do a few tests such as lifting things and movements to see the extent of the damage. Then he is going to be giving me a letter with restrictions and an OK to go back to work.....where ever that may be. I know his assistant told me to think the second or third week of December to be back and getting into the swing of things at work. I am pretty scared to go and have this x-ray done. They want to x-ray done to see how and if anything is growing back. If everything goes as well as can be (and I have been pretty lucky with those so far) nothing should show up. If there is something that shows up then there is a problem and we will be back and testing the waters all over again. I haven't really told my friends when I am going in again because I still have that little hint of bad luck that seems to follow me around. That and knowing that the cancer pretty much never leaves the body scares the hell out of me. That will always be in my mind. The way I figure it right now is that I beat it and I am done with this whole thing. Still doesn't take away from the fact that I am freaking terrified to do the tests and x-ray.
I know I have given shout outs to people but I am going to give out a nice long list of people and reasons for a few of them. There are quite a bit of people I lumped in to a group but everyone knows who they are.
Obviously, I have to say my parents and family. Take about handling a major situation and not backing down one bit. I know where I get my stubbornness and arrogance from. Yes, a bit overbearing at moments and that is something that really helped me to push and get things over with. Sorry it's true! Having all of them telling me to handle everything my way and don't let anyone tell me otherwise was actually a huge relief. Especially since I was going to be doing it anyways. Having that support system was a major relief.
W-house and crew in Madison. What an amazing group of people. Not one of them allowed myself to get down and out. Which is a common occurance with people their second time through. Having them keeping me active and running around kept my mind clear believe me. That and getting a bit crazy always helps out. They also look wonderful in cardnal red.
Kerry I need to thank you for getting me on mangosteen juice. I believe it did help me out in many ways.
Jay and E-rock for being the life of the party at the Janesville and West Allis benefits. Talk about out of left field support from you guys and that is awesome.
My former and current co-workers at CB&K and Gustave Larson. Just the checking in on me and asking questions is something that helped me clear my mind a bit. I'll see some of you guys soon.
Traci V. for taking in a homeless feller..... lol wino
The Hope Lodge people for being just that cool.
Michelle for looking me straight in the eyes at Luckys and telling me "You are to strong lose this fight". Certain things like that from other strong people are things I could not forget along this journey.....Currently, I think she was and is right but at that time I thought she was a bit nuts.
Chris Peters for just being that guy. Who doesn't love a good ol rock show benefit? That and making me go to the gym everyday and busting my ass. I also must say that he is pretty swell. My favorite quote from him was that I was too pretty to let cancer beat me. I laughed my ass off for a while after that one.
The oncologist that told me to accept the fact that there is no real help in sight for me. That would be Dr.Skubitz. Real motivating factor for me to prove his smug ass wrong.
My Minneapolis crew for still being the same kick ass people since the day I left the second time. hahaha. Everyone of them are different but all rule the same. It really showed at the benefit up here in the cities. The flock of people I knew that came out was amazing. The bands and artists that I know and deal with in town even showed up. Helps to know my wonderful self was missed just a bit.
Those crazy crazy Eau Claire people. Nothing changes there and they are all egging me on to do the impossible. They were there the first time and probably know me better than most so it was funny because it was almost like "oh, he is sick again? eh, he can do it a second time. so what else is new?" Honestly it was quite refreshing.
Joanne, Heather, and Amber for messaging, commenting, and e-mailing me. All of that advice and suggestions were taking to heart trust me.
I must say that I have to give the Brewers a shout out for giving me the joy to watch a playoff game while doped out on some major narcotics while in the hospital. Even though they stunk it up I did see one victory and that was more than the Cubs got.
The other news is that next week Tuesday I go into the doctor to get a chest x-ray not a CAT scan done. Then I see the Dr.Maddaus who was the Thoracic surgeon. He is going to have me do a few tests such as lifting things and movements to see the extent of the damage. Then he is going to be giving me a letter with restrictions and an OK to go back to work.....where ever that may be. I know his assistant told me to think the second or third week of December to be back and getting into the swing of things at work. I am pretty scared to go and have this x-ray done. They want to x-ray done to see how and if anything is growing back. If everything goes as well as can be (and I have been pretty lucky with those so far) nothing should show up. If there is something that shows up then there is a problem and we will be back and testing the waters all over again. I haven't really told my friends when I am going in again because I still have that little hint of bad luck that seems to follow me around. That and knowing that the cancer pretty much never leaves the body scares the hell out of me. That will always be in my mind. The way I figure it right now is that I beat it and I am done with this whole thing. Still doesn't take away from the fact that I am freaking terrified to do the tests and x-ray.
I know I have given shout outs to people but I am going to give out a nice long list of people and reasons for a few of them. There are quite a bit of people I lumped in to a group but everyone knows who they are.
Obviously, I have to say my parents and family. Take about handling a major situation and not backing down one bit. I know where I get my stubbornness and arrogance from. Yes, a bit overbearing at moments and that is something that really helped me to push and get things over with. Sorry it's true! Having all of them telling me to handle everything my way and don't let anyone tell me otherwise was actually a huge relief. Especially since I was going to be doing it anyways. Having that support system was a major relief.
W-house and crew in Madison. What an amazing group of people. Not one of them allowed myself to get down and out. Which is a common occurance with people their second time through. Having them keeping me active and running around kept my mind clear believe me. That and getting a bit crazy always helps out. They also look wonderful in cardnal red.
Kerry I need to thank you for getting me on mangosteen juice. I believe it did help me out in many ways.
Jay and E-rock for being the life of the party at the Janesville and West Allis benefits. Talk about out of left field support from you guys and that is awesome.
My former and current co-workers at CB&K and Gustave Larson. Just the checking in on me and asking questions is something that helped me clear my mind a bit. I'll see some of you guys soon.
Traci V. for taking in a homeless feller..... lol wino
The Hope Lodge people for being just that cool.
Michelle for looking me straight in the eyes at Luckys and telling me "You are to strong lose this fight". Certain things like that from other strong people are things I could not forget along this journey.....Currently, I think she was and is right but at that time I thought she was a bit nuts.
Chris Peters for just being that guy. Who doesn't love a good ol rock show benefit? That and making me go to the gym everyday and busting my ass. I also must say that he is pretty swell. My favorite quote from him was that I was too pretty to let cancer beat me. I laughed my ass off for a while after that one.
The oncologist that told me to accept the fact that there is no real help in sight for me. That would be Dr.Skubitz. Real motivating factor for me to prove his smug ass wrong.
My Minneapolis crew for still being the same kick ass people since the day I left the second time. hahaha. Everyone of them are different but all rule the same. It really showed at the benefit up here in the cities. The flock of people I knew that came out was amazing. The bands and artists that I know and deal with in town even showed up. Helps to know my wonderful self was missed just a bit.
Those crazy crazy Eau Claire people. Nothing changes there and they are all egging me on to do the impossible. They were there the first time and probably know me better than most so it was funny because it was almost like "oh, he is sick again? eh, he can do it a second time. so what else is new?" Honestly it was quite refreshing.
Joanne, Heather, and Amber for messaging, commenting, and e-mailing me. All of that advice and suggestions were taking to heart trust me.
I must say that I have to give the Brewers a shout out for giving me the joy to watch a playoff game while doped out on some major narcotics while in the hospital. Even though they stunk it up I did see one victory and that was more than the Cubs got.
Monday, November 17, 2008
Here I am again
Well I am continuing on with my work outs and relaxation, but I am going pretty stir crazy. I am also waiting to get back into the thoracic surgeon so I can get cleared to return to work and get back into the swing of everyday life. I have gone to see one of my favorite bands (Avenged Sevenfold), visited friends, and had good times for the Badger games over the last few weeks. Other than that I feel much stronger, but I sleep a hell of a lot more. Things are getting better overall though. I have also managed to keep most of the weight off and I sit right around 195. The one thing I have noticed was that I am putting on muscle and slimming down. It is kinda nice. I also watched a movie today that was really interesting. It was called Saints and Soldiers. A low budget WW2 film which is right up my alley. I highly suggest it if you are into that type of stuff or you can watch it through this link. http://www.hulu.com/watch/32278/saints-and-soldiers Well that is all I have for now and I promise I will update more frequently.
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