Saturday, January 18, 2014

Here I am

Everything has been altogether ordinary and altogether not ordinary, which is my status quo. Melanoma Man is in good spirits and his energy level seems good too. The FDA just approved a new combination therapy for recurrent, inoperable melanoma. Dabrafenib + Trametinib= braf inhibitor + mek inhibitor. He got through the prior authorization process and the Trametinib will arrive Wednesday. He's been on the dabrafenib alone since November. In the early days of melanoma when we were newly engaged and newly married I read journal article after journal article in my attempt to understand and control melanoma. Now I just hit the highlights which is infinitely better for my mental health. I feel confident about the Weber and Dr. Rau and they make us feel like people, not just statistics. Last week one of the Dads at a Boyscout event asked Melanoma Man if he is Butter's grandfather. He was crestfallen. I remarked to MM, did you tell him that you are just an unbelievable stud, keeping up with your 47 year old wife? It made him smile. The dark clouds were brushed away as I shone sunlight upon his sky. It is important for me to remember that he should be someone's grandfather, as are all his college and law school classmates. It is important because he gets out of bed everyday cheerful, making plans for our boys, encouraging them, and coaxing them in spite of fatigue, breathlessness, and joint pain.  Sometimes he pushes too hard, like trying to plan Butter's college career at Princeton. Me, I am trying not to look ahead farther than a few days. Butter, he is still talking about Heaven, if it is real, and how can I believe it, and how did I come to believe it, He wants every detail of my faith journey, but for now I sift through the memories and parcel them out. 

Other big events  in our extended family: MM's cousin Roy lost his battle with cancer two weeks ago today. I can't remember a trip to Riverton without seeing Roy, always steady, reliable, bright and humble. When I felt like such an outsider in this huge North Carolina family, Roy always pulled me to the inside, made me feel at home and part of. It's a true accomplishment because most of my outsider ness comes from within my own head. Roy turned 64 four days before he died. We saw him at Thanksgiving in Riverton. Even then he was planning a spring canoe trip down the Lumbee River and raising money for a college scholarship fund for some young man or woman from one of the poorest counties of North Carolina. MM and Roy spent summers together in Riverton, probably not together, but parallel. Cousins spoke of them in the same sentence as the cousins who survived cancer and embraced life. His death reminds me of the edge. It reminds me of the importance of Heaven. I am hoping Roy has met up with my father, JLS and my grandmother VEW. They would really enjoy each other. I like to think of them having the chance to meet.
Tonight I am in bed with a fever and headache. MM and Butter are watching Percy Jackson, Sea of Monsters. iMac is in Georgia freezing cold camping with scouts. I have in the refrigerator another ridiculous concoction, Black Bean brownies. Don't underestimate the importance of fiber I say. Shh, don't tell the boys!

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