Things that Blew Me Away Last week and This

Every weekday morning I get up at 5, turn on the coffee maker, which has been preloaded with coffee grounds and water the night before by Melanoma Man. I spend an hour watching the weather channel, checking Facebook, reading the Skimm. At 5:45 I hit my fast forward button and spend the next hour getting myself, one kid and three lunches ready. The other kid gets ready after I leave for work.

MM had been feeling "under the weather" over the weekend, very short of breath, chills, aching all over, no fever yet, but getting a little cranky. I am friends with many of MM's cousins on FB, since MM won't use FB, it's how we keep up with some of the family and they with us. Cousin Ella had posted Lennon and Maisy singing "That's What's Up." I liked it so much I downloaded it onto my phone and listened to it on my way to work. It came in handy all week long. MM would be cranky with me for helping or he would be cranky about forgetting something or someone. I would sing a line from the song, many of which I now know by heart from the extensive car singing rehearsals I have been conducting. It was a tiring week, which culminated in nothing in particular being wrong. Let's call it a Dabrafenib storm. He has had them before as a result of this miracle drug and he will have them again. The trouble is they look an awful lot like coming down with something dreadful. I don't sleep well on storm weeks. I wake up, and eyes closed listen to his breathing, assessing the sound and whether it just requires monitoring or requires eyes open and action. He reads books, lots of books and plays solitaire on the computer, and does puzzles during the storms. He does not ask for help, or shop or cook. He doesn't want me to shop or cook either because it makes him aware that something is happening and we don't know what yet.  He thinks, maybe tomorrow he'll bounce back, but they usually last 5-10 days, not one. I make helpful suggestions like, " maybe you should give Dr. Array a call?"  I send him helpful emails that recap his symptoms, hoping he'll send them on to one of his health care providers. Honestly I can't tell. Does this the shortness of breath look like a pulmonary embolism, pneumonia, plain ole worsening alpha 1 disease, or is it pneumonitis from the drugs. Since I can't tell, have no lab in my living room, no X-ray or Ct scan or radiologist for that matter. I always wish he would consult the pros earlier than later. It is hard and tiring work being married and being nice, but Lennon and Maisy helped me to be nice. Then yesterday work colleague KW showed me this: Blind Devotion. She said I would need tissues. She was right. Last night I showed it to MM. We sat on the edge of the bed, tissues in hand watching it on my iPad, tears streaming down. Then he said this: Thank you.

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!