Thursday, March 24, 2011

Living in the cracks...

...of melanoma It is one that is dealt with by far too many and in so many different ways. Though, for all of us, I think we all try to live the best life we can in the cracks between melanoma evaluation and treatments. It is frustrating. It can be terrifying. It is my life. It is part of the life of all of those who know me...yet, I am the only one who knows what it is really like...sort of. Lately, I have looked at the way others have been dealing with the all too familiar therapies, evaluations, and insulting incursion of melanoma into their lives and in the lives of their families. Oddly enough, I am an old-timer, compared to most of them...having been given my diagnosis in 2003. I don't know if that is a comfort of not!

Below is a list of blogs and sites you might find interesting.
If you some of the following:

Melanoma Missionary: A blog written by a guy in a technology field, diagnosed in 2005. It is filled with data that is accurate and connections to many other sites. I am not sure what treatments he has utilized personally, but the information is thorough to say the least. Brent checks it regularly as part of his DAILY melanoma research, but I don't think anything here has been news for him, but many of the articles, links and writings explain things very well.

Gentle and/or Melanoma Madness: Both of these sites are maintained by a lady in the exact same trial at Moffitt that I am in. She was diagnosed in 2009 and just completed her second 3 month round of anti-PD-1 and vaccines this month.

Smelanoma: A blog by a guy who might be a little younger than myself. Diagnosed in 2008. Has tried a special diet to treat his melanoma and is currently undergoing treatment with ipi.

Melanoma Road trip USA: Go to u-tube and type this in if you're interested. Two guys diagnosed with melanoma from Australia have traveled here in the states interviewing people with melanoma, allowing them and their families tell their stories. One that interested me was, Bob Lawrence, who has had multiple gamma knife radiation treatments to the brain (no special Halo like mine!! HA!) and is now undergoing treatment with ipi. He has been diagnosed for 23 months.

Who knew? Live whatever cracks you have. love - c

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