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
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