Monday, April 7, 2014
saturday was the melanoma symposium that we go to annually to learn about some of the latest information on melanoma. it is always a tough mixture of emotions, comfort in knowing that really smart people are working everyday to find a cure and answers, anxiety when hearing the statistics (which we all know aren't good for stage iv patients, and i try my best to remember those statistics are just numbers), sadness that i am in a room full of people that are all affected by melanoma and wishing we could all be anywhere else.
but that is where we were, so you just find a way to make it through.
we heard about familial melanoma and genetic predisposition. that is always a rough one. to know that family members have a 2-3 times higher risk of melanoma since i have it. to know that malena's chance of having melanoma is higher because i am her mom. i carry a lot of guilt (though i know there is nothing i can do it, the guilt still comes) for that increased risk that family members have. none of it is easy, knowing that malena has a higher chance of cancer due to me is so tough for me to deal with. at certain times, i just want to curl up in a little ball and wish it all away.
we learned about the latest with immunotherapy, and combinations of radiation and immunotherapy and how they can work together. i am always hopeful when hearing the smart doctors talk about the research and clinical trials they are leading. it does my heart good to know that there are people dedicating their lives everyday to finding a way to make a difference in patient's lives. to give them more time. it can be tough though to hear the ways in which they often think of the goals related to melanoma -- prolonged lifespan (and you know they are talking in terms of months and additional years for the lucky ones), preserving quality of life, etc. those are all tough words for me to hear. i don't like thinking or talking about a fight to gain more a little more time or maintain some quality of life. but then i remind myself i have already been in the fight for more time since july 16th 2010.
some current patients shared their stories. tears, always a lot of tears. one woman spoke about when she was diagnosed, and her option of doing interferon for a year. she said that she had a son and she wanted to see him grow up, so she did the interferon for the entire year. she talked about how it felt like having a miserable flu for an entire year straight, and how she did the self-administered shots three times a week. it was like listening to my own story, because it is was just like my own story. when she choked up talking about how she told her son that she didn't know how much time she would have left with him, i grabbed for my kleenex. lots of them.
one of the things that had come up during one of the presentation was that the actor james rebhorn passed away from melanoma recently, and he wrote his own obituary. the obituary is probably one of the most beautiful things i have ever read, in particular the parts where he talks about his wife and children. i had come across it inadvertently right after he had passed away and there were headlines about his passing, it took my breath away when i read that he passed away from melanoma.
one of statistics shared is that there are more tanning salons in this country than starbucks and mcdonalds combined. that makes me sick to my stomach.
this year at the symposium i sat next to my friend deb who also lives the words stage iv melanoma. it was so nice to have her and her husband to sit next to, made me feel like barrett and i were less alone in the fight. i could see deb shaking her head as she also heard survivor stories from people who shared stories similars to her own. deb shared her story a few years ago at the symposium, so she knows how hard it is to get up in front of the room and share your story. but in that room, you know that you are talking to an audience that is there because they too have been affected by melanoma -- they are either a patient or they love someone who is.
it always takes a few days to get my rhythm back after going to the symposium. being reminded of the statistics. seeing the pictures. being reminded of it all.
but at the end of the day, there was hope.
there is always hope.
some days you just have to hold on to it tighter than others.