Sorry it's taken me a while to write an update. The first thing I wanted to write about is in regards to a type of treatment that I'll eventually need called Radioimmuno Therapy. I won't write about the details, but I hope all of you will read this:
http://www.newsweek .com/id/70301 . The Government is going to take away Medicare coverage for this class of drug and I won't be able to get it when I need it which can definitely take tens of years off of my life expectancy. The article will explain why I would care as a 28 year old about it, but the vast majority of people with lymphoma are on medicare so if they can't use this drug the companies will have no choice but to pull it from the market. This will also discourage other companies from doing further research on this type of treatment since they won't be able to sell it since Medicare won't cover it. I don't like pushing any of my beliefs (political, religious or otherwise) on most people, but if you feel inclined to write your senator and/or representative you can find out how to get their email address and exactly what to write at this link:
http://www.lymphomation.org/CMS-call.htm#email . Ok, on to the fun stuff.......
1) So, as my last post said, I just had my 3 month check-up so that my doctors could check to see if my platelets dropped at all and/or if my lymphnodes had grown. The doctor came in the room and said that my platelets went up to 125,000 and the lymphnodes didn't grow. It's hard to describe what it's like once the oncologist comes in and the four of us (my mother, father, Kristin and I) get whatever news he has and then start the barrage of questioning. Some questions are great, some aren't, some have been asked before, most haven't, but there's usually a lot of them. In any case, the following clip shows what it's like. The four of us are McCauley Culkin and the oncologist is John Candy.
http://www.youtube.com/watch?v=YZMWgW6QNuw&feature=related
2) I've spent pretty much zero time thinking about death, but the only thing that's certain is that I'd like this guy to sing this song at my funeral regardless of whether it's in 60 years or 5 years (disclaimer: I'm 98% sure this guy is NOT mentally challenged) The last 30 seconds are priceless:
http://www.youtube.com/watch?v=6lHHQu4CIos
3) My parents, Kristin and I went to see a specialist talk last night about lymphoma and what he said was encouraging. There are more and more people going in to remission for 5, 6, 7, 8+ years and a cure may be out there, it's a matter of time before they know for sure. What he reaffirmed is that my age and health are the best things you can have in your favor when you have lymphoma. To put this in perspective, all Follicular Lymphoma patients have a good chance to do well, but I have a slightly better chance because of the aforementioned things. To help visualize this please view the following clip. (I'm the guy on the left and elderly people are on the right) The lesson: we may both have a good chance, but I have a slightly better chance.
http://www.zippyvideos.com/8027910571190176/snl_-_chris_farley_-_chippendales/
That's about it for now... I'm definitely posting next week on what all the different tests (lymphnode biopsy, bone marrow biopsy, CAT Scan, etc) feel like. There wen't many updates to this one since I didn't have any new news from the last appointment, but no news is good news. Till next time....
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