Mike Judge vs Ewing's Sarcoma

As you all already know the last day of the month of February is rare diseases day. Wait, no you didn't. I’m willing to bet that not one of you out there reading this knew that. Do you know that July is sarcoma awareness month? Or that pediatric cancer awareness month comes the month before pink october? No to both? I’m not surprised because one year ago… Neither did I. As you already know I was diagnosed with a very rare form of bone cancer named Ewing’s Sarcoma. Over the past several months I have learned a lot about sarcoma, and pediatric cancer. Here are some statistics that I’d like to share with you. They may surprise you. I know I was shocked, and upset when I read some of these facts because my assumptions about these diseases were completely wrong. Sarcoma Facts  There are over 50 types of sarcoma  At any one time there are approximately 50,000 people struggling with the disease.  Each year there are 14,000 people diagnosed with sarcoma, and 6,000 die from...

Since my last post I have had one major complication occur due to treatment. Hemorrhagic cystitis. Well what's that? It's bleeding of the bladder, and it's easily the most painful, and bothersome side effect that I have gotten from my treatment. It started on Friday morning when I noticed that it was painful to urinate. This was new to me because usually during my B treatment weeks I pee in morse code by Wednesday(Grown ups reference), but it would never get any worse than that. Especially not painful. This couldn't be good. I told my oncologist about it, and he increased my Mesna dosage to protect my bladder, and said if it gets any worse then he would cancel my ifosfamide chemo drug on Monday. On Saturday it was more painful, and also more frequent. It's now Thursday as I'm writing this, and the longest time I have had in between peeing is an hour and a half and that was today. That includes nights too. Average time is 15-20 minutes during the day, and 30-60...

Right now I'm in Radnor stuck in a hotel with a crazy snowstorm brewing outside. This storm is crazy. We already got 10 inches! Chemo was cancelled today due to the storm, and I'll be back for day 4 tomorrow. Day 5 will be Monday. Good thing the hotel is located right up the street from clinic. Tomorrow I'll find out how this storm will affect my next cycle. I'm thinking that my next cycle will be moved to next Wednesday because of my shots which would run until next Monday.  So far I've been pretty good this week. This week has definitely been easier than the last B week. It's a shame that we got this storm though. I was only two days away from finishing the cycle, but now I'm so far away. I don't feel like I'm getting anything out of this day off, and then I'll have the same thing over the weekend only to get a day of chemo on Monday. I hope my next cycle is moved from Monday until Wednesday because I don't think I'll be ready for ...

Short update: Last week was a great week for me. I got to go out and do a lot, and it was very enjoyable. This week has been more of a rest week for me. The only exciting things I did this week were to pick up my glasses yesterday, and blood work on Thursday. Sounds really fun doesn't it? Not really, but in all seriousness I really needed to just rest this week. If there is one thing that I have done well so far in this cancer treatment its to listen to my body. I push myself a little bit from time to time, like last week, but mostly I haven't. My blood counts, and overall health during this has been really good so far. Some of that success is due to luck, but I have done everything right and that definitely helps. Sunday was the last day that I really did much. I went to my brother's basketball game. I'm still a bad luck charm though. Maybe this Sunday they'll get a win when I see them play. No pressure guys....just kidding. Looking forward to the game. It look...