Wednesday, February 1, 2012
"Joy offers itself in strange forms and there is little enough in any lifetime. Too bad we are taught to look askance at so many of them." (The Sweet Death of Candor, Hannah Lees, 1969, p. 55)
My children bring me sheer joy (most of the time!). Blessed am I when they both sit with me and perform random acts of kindness, such as listening and talking, really having a meaningful conversation.
The nausea has kicked in full bore. Anti-emetics are not helping. Finding that "special place" in my mind where I can recall a moment of joy....
Tuesday, January 31, 2012
My Daddy (who is just starting to wear thin at the edges enough to make me weep through a family dinner in a restaurant a few days after my major surgery) always says "life is uncertain". If I could hear the words of wisdom either of my Grannys would offer at this tenuous thread... one might say "Bloody Well Get on with It! A loving draig asked me this morning how I felt -- it was just as I got up at 6, and now at 1 in the afternoon I feel purposeful, having to carry out the goals that I have set for this hour, today, the week, the weekend.... I have always thought my life would have had purpose it I left this world a better place than I entered it. I have purpose. My children, who have taught me the lesson of both unconditional love and patience. It may not be fun, but, like giving birth, the pain must be borne. I am not afraid of dying, I am afraid of dying without dignity. My word is my pride. Let my children make me proud. I have every confidence they will do so exquisitely. nk
Thank you for reading.
Monday, January 30, 2012
Well, apart from a 1" needle protruding from my chest wall, held in place by several layers of dressings, I feel a little less like Frankenstein's Bride than I did a month ago (when I was held together with stitches and tape). I had my port inserted into my chest below my collar bone on Friday -- this is a mechanism that feeds directly into a main artery and has a rubber gasket below the skin so that with a simple lidocaine freeze, I can have all my labs drawn and all my infusions/transfusions done through the self-sealing port (about 1.5" wide, and it sticks up about 1/2" now -- though since it was just done it is still quite swollen). Apparently the gasket can withstand about 5,000 pokes, before it needs to be replaced. Today I "christened" the port by having my first (of 8 in 8 days) iron infusions, which took about 3 hours. I got a variety of anti-nausea drugs, and as large a dose of iron as one can tolerate in one day. The port is now attached to a bit of surgical tubing, like that in an IV, and it will remain there until these infusions are done next week. The whole process was a bit surreal, and I had an awful taste of rusty nails in my mouth, but (lesson learned) if done on a non-empty stomach, the nausea is minimal. I also had a chest xray to screen for lung cancer, and an interesting scan of my heart -- they opened another IV, pulled out a flask of blood, changed the valence of the red blood cells chemically, reinfused the radioactive blood, and took a series of 5 10 minute scans for a baseline measurement of my heart's capacity etc. So tomorrow I will "unlock" the heparin block (to prevent clotting within the port) and get hooked back up to the IV without any more needles! Star Date 1-30-2012.