Thursday, March 12, 2015

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.