I was able to head to Rockford last night (sporting my Wild jersey). Pretty sure I was the only Wild fan in the house last night. Anyways, they lost 3-1. Zucker had the only goal. I almost didn’t make it the whole game. My chest hurt so bad and I came down with some sort of cold or flu. I still feel like complete trash. After the game I did meet some players and got a few autographs despite being a complete mess. The whole team was super nice. Glad the Wild draft and sign quality kids.
Brett Bulmer, Erik Haula
Zack Phillips, Johan Gustafsson
I had a routine CT scan today. After the second chemotherapy cycle you get a scan to determine if there is any shrinking of the tumors. If there is shrinking, you stick with the plan. If there isn’t then its onto the next chemotherapy treatment. Personally, I feel it has worked. My sternum and collar bone has physically shrunk a bit. Maybe that’s just my hopes being high. I did ask for the doctors at Mercy to let me know asap. I’m fairly sure they will let me know on Monday when I go in for chemotherapy……..assuming everything is working. Then I have an appointment with Robert Hegeman on Tuesday. He is my primary Oncologist and at University of Wisconsin Madison. I live in Janesville so I do chemotherapy treatments here instead of driving 45 minutes each way. I’ll have two solid oncologists following my case in the area so that’s nice. Anyways, I’m sure I will have a very fun filled weekend despite the extreme anxiety I’ll be fighting. I’ll be at the Iowa Wild at Rockford Ice Hogs game tonight cheering on the Wild. Then on Saturday I’ll be at The Rave in Milwaukee seeing some guys I know in the band “Get Scared”. I’m hoping my symptoms and chronic fatigue are held in check.
Well I finally met with Mark Agulnik at Northwestern University Hospital this past Tuesday. My father went with so it was a nice road trip and I believe it also helped him relax a bit more about the situation and it was a nice bonding experience. Not to mention we bitched about the Packers and Aaron Rodgers being injured. I’m not a fan of Chicago so all I can say is downtown traffic sucked and the parking ramp was 45 minutes of hell. The hospital itself was really nice and modern. Basically, the appointment was a meet and greet. We did go over the situation and learned some family medical history from my father. They mentioned if my family had been diagnosed with Li Fraumeni Syndrome. I’ll explain what that is in a later post. Mark is basically one of the main Angiosarcoma specialists in the Midwest region. I did feel like more of a number than a person but he is the guy you go to when all things have failed and you want to get shoved into a clinical trial. He did say that my current game plan is right on and what he would’ve suggested to start with. He does have 4 clinical trials but wouldn’t remove me from my current plan. His 4 trials wouldn’t fit my case either because I do have the 2 blood clots and bleeding issues in my lung. Nonetheless it was informational and reassuring to know that the choices I have made in my own treatment has been pretty much right on. I did ask for a list of possible chemotherapies if the current one is a dud to which I don’t believe it is. Here is the list:
Regorafenib (this will be my next step personally)
Clearly, I have a lot of research ahead of me. I did ask his opinion of surgery if the tumors in my chest shrink enough. He didn’t think it was and option at all. I get that from certain doctors. I’m a real risk taker so I’m always on the look out for a surgeon. I understand I’m in a 99% lose situation but I was that way in 2008 too. So the original idea was to shrink it and contain it for as long as possible unless I find a super skilled surgeon willing to take a huge risk. Its different for every doctor. Luckily, I have two surgeons I’m dealing with already. Tracey Weigel in Portland, ME and Raja Flores in NYC. Two of the best thoracic surgeons in the country.
I’ve had a rough time lately with these chemo symptoms. My calves and ankles have swollen and hurt terribly. No matter how much I walk to help push the water through my body it just isn’t working. I’m also extremely dehydrated. I’ve drank so much water just trying to keep up and make the feeling go away. Its kind of scary. These are brand new problems thrown on top of the normal issues. Its so annoying. My chronic fatigue syndrome is also at an all time max. I’ll sit down for a few minutes and I’ll be out cold. I don’t think it has anything to do with being at grandmas house because I feel more comfortable. Especially when going to bed. I just gotta deal with it because that’s all I can do but I’m going to have to mention something to my doctors come monday. Unfortunately, this is my week off so I’ve gotta go through hoops to see them/talk to them.
I also saw my niece Layla and nephew Jackson for the first time in a few months. I love those kids so much. I wish I could see them more. Layla is actually walking now. Jackson is a little taller. Ugh the little things in life are the best.
Well my symptoms have sucked pretty bad this time around. I don’t get it. I become so tired after getting the dosage but was unable to sleep for 40 straight hours. My doctors have no clue why this has happened to me the past two doses. Its so awful. Since then its been every 3-4 hours ill wake up, pee, walk around and then crash again. The flu like symptoms are more intense. Standing too long is not an option either. The restlessness and tingling in my hips and thighs seem to be more frequent as well. Despite all of this, I was able to make the hour and 15 minute drive to my grandmas house without incident. I went to the Filter show last night. I was so beat but Fight or Flight was awesome. Filter was a long time coming for me and it wasn’t disappointing. Check them off of my want to see list. It was worth dealing with the shitty symptoms. Thanks to The Rave for having spots to sit. That was a relief. So its nothing but trying to sleep and relax until Saturday night. My friend gave me a free ticket to the Milwaukee Bucks game. I’m not a NBA fan at all. I just have never been to a Bucks game. I’m also hoping to see my adorable niece and nephew at some point but I just don’t want to be sickly around the kids. They don’t need to know anything. Love those kids. OK have a good day everyone.
So here I sit at chemotherapy. Its become such a practice that the nurses and I have this thing down to a science. The only thing that bothers me is its never ending redundancy. Then again if its a progressive redundancy how can I complain? Next week though I have a CT scan to see if there is progress. It is kind of nerve wracking but its what I have to do. I also have been sending my medical notes to a high end surgeon in NYC named Raja Flores. They are looking at my stuff before I would ever fly out there which is rare these days. I also have an appointment with Mark Agulnik at Northwestern University next Tuesday. Mark is one of the best specialist in the area of Angiosarcoma. So I’ve been dealing with medical records departments for 2 hospital systems. What a headache. Speaking of headaches. My TTM project has been interesting so far. I have been writing a letter whenever I have a few moments of boredom or nothing happening. The only problem I am experiencing is I am getting headaches and discombobulated at times. Its extremely weird and disappointing at times. The only thing I can do is keep on keeping on. Although I will say I will its been awesome looking through all of my old baseball cards from the late 80s and early 90s. So many games and stats that came back to me. It was super fun. Hopefully, some of the players I mailed cards to send them back. It’ll be sweet to see this project come alive. Ill be at the Filter show in Milwaukee on Halloween and I’m hoping I can get Richard Patrick to sign my cover of “The Amalgamut” I love that album. Then Saturday night I am going to the Milwaukee Bucks game. If we get there early enough I’ll try for a John Henson Auto but that all depends on how I feel from chemo. I like doing things and getting out of the house but sometimes it is just too much for how weak and tired I get during the week. Either way. I just have to keep on keeping on. No turning back now.