After the uncertainty of last week, after more tests and procedures (including another iron infusion), after intense discussions with the doctor and nurse about whether to start now or after the holidays, I have been accepted into the clinical trial and am actually starting today. Everyone agreed that, even though it would be nice to have a medical-free holiday and visit Roger’s/our son Simon in Halifax, as planned, the risks in delay were too great. (And with the omicron variant raging, as well as unpredictable winter weather, this makes even more sense.)
So this is serious. I am writing at 4:03 am, after dreams of a wolf woke me up. (The wolf was on a leash in some kind of forest-setting in a museum; then he — I think it was a young male wolf — got loose; I shut the door on him, then looked for someone to tell. After a while, Roger and I were sitting on a bench, and the wolf approached, his coat a mixture of brown, grey, and white. I felt scared at first, especially as he came toward me, but he wasn’t growling or attacking, and eventually seemed almost friendly, curling up on the bench near me. So perhaps this dream is a sign the treatment will be less difficult than I fear. (or another story altogether). I do have to stay in hospital Wednesday and Thursday night so they can monitor my reactions to the drugs. Next week, Dec. 23, I will just have to stay one night; eventually, it will be day-treatment every three weeks. If all goes well.
Meanwhile, I feel surrounded by love and support from family and friends: thank you for the lighted candles, encouraging emails, texts, and calls, and your presence and prayers. And Roger, my companion on our mutual journey. Thanks, too, for the medical teams for knowledge, skill, and caring.
I will update this blog during the next couple of days… so stay tuned. And stay well.
Dec. 16, 7:30 pm. Well, I’ve gotten through the first 2 days and am doing okay, no extreme reactions to the new drug — though I could still experience something tonight or tomorrow, which is why they will keep me in hospital through Friday night (and also they need to blood tests on Saturday, so it’s better to stay over rather than leave at night and then return). My hemoglobin was lower again this morning, but I was allowed to have the drug infusion (a great relief) and then they did a blood transfusion late this afternoon. Lots of poking and prodding and reading vital signs today but, as I said, nothing disastrous. And I am hungry enough to eat the hospital food (note to self: next time bring chocolate bars!). I did bring my journal and several books, to have variety in reading (look at all those books, the nurses have commented). Nurses are great, skilled and caring, and I had a brief visit from my doctor tonight to see how things are going. We agreed that it was an essential decision to start now, so the liver lesions — which are growing — don’t have the opportunity (like the 1% of billionaires) to continue growing at the expense of the rest of my body. (the sixties phrase, “the political is the personal” still rings true.) I am glad to have poetry around me — living in a world where the imagination is full of literature, art, music, history, nature brings so much more connection — and messages from friends and family. Because of covid, Roger can’t visit (though we live only 20 minutes from the hospital), but we have talked on zoom — overcoming a few technical difficulties. And a sense of humour helps, too — even/especially in difficult times. As many people before me have found out. And some pleasant memories from childhood keep coming into my mind. Perhaps because I keep having to tell the nurses my birth-date, and I realise 1945 must seem ancient to them. (I am the same age as some of their grandparents). One nurse, reading my temperature said, “cool as a cucumber,” and I remembered, fondly, that my mother used to say that.
“Goodnight Mrs. Calabash, wherever you are.” (an old Jimmy Durante line).