Just some late night thinking here. I sometimes wonder what Kevin is thinking when he thinks of Angiosarcoma. When I think of it, sometimes it’s almost like we’re just deailng with some illness and that’s that. However, Angiosarcoma, as with any other major disease, becomes a part of your life. You either accept it and it becomes just part of your life, or you ignore it and let it do its thing.
Being home has made me think a lot about that-sometimes I just FORGET that we have this illness, and then sometimes it is so very apparent. Like today, seeing Kevin’s nausea and stomach heaving. It’s difficult to watch, to not be able to do anything but push drugs hoping they’ll help.
It’s even harder when it’s such a rare cancer, such a rare disease that to find people who are battling it is like finding a needle in a haystack. For me, I feel the need to just connect. To talk to someone other than my husband who is forging and WINNING this battle. I need to know that others are winning versus the statistics. I’m an activist-I always have been-when something touches my heart, or affects me, I want to jump to action as quickly as possible.
Right now, my jump to action is to take the best care of Kevin as possible, and I pray that God continues to give me the strength to do that to my best abilities. But I want to get connected-I want to talk to others and see what they’re dealing with specifically with angiosarcoma.
I know people want to relate-the statistics say that 1 in 2 men, and 1 in 3 women will have cancer in their lifetime. That means about half of everyone I talk to has or has been affected by cancer. So of course, they “relate”. But it’s sometimes hard for me to see where people who’ve experienced breast, lung or ovarian cancer are coming from. In some ways I feel jealous because I feel that those who experience these more general cancers have more information, more resources, more funding for research, more people to connect to-and they do. However, I know it’s not right to feel jealous of their advantage because God hands us each different cards in life. (Please do not take offense to my late night ramblings-I know many, many people who have dealt with these very difficult cancers, and I feel and connect with you the same-This is my mind going to town on me tonight)
For whatever reason, God felt that we were strong enough to be dealt the rare gem. I’ve finally found a few people online to connect with who are dealing with angiosarcoma, and I hope that opens doors to more. I want to connect with general Sarcoma awareness groups and see what awareness we can raise here in Pennsylvania.
This disease can make you feel very isolated. Any disease can, but when not one person knows the word Angiosarcoma outside the medical world, it is certainly discouraging.
Lift us up tonight-Kevin especially as he is dealing with significant stomach and abdomen pain. Lift me up as I deal with the anxieties of moving forward while still being present. Lift us up as we forge ahead adjusting to this new life. Lift God up for his many blessings and for holding us in His arms through this ordeal.