Tuesday, June 27, 2006

From Seton Hospital, 17-26 June

Notes from Seton Hospital, 17-26  June

Days from beginning of hospital stay, starting from 0: 9
Days from onset of diarrhea: 12
Days from beginning of treatment with Phlagil (sp?): 8 (2 to go)
Days from beginning of systemic chemo: 13

Dream fragment: There is a beautiful, placid lake with clear, still water. I think I’m in a boat moving swiftly across it, but somehow also watching from some undefined vantage point. A voice—mine?—calls out in fear: “Is there some way out of this?” Suddenly the water is shallow, much too shallw, as if it has drained away. There are only stones as far as the eye can see, brownish, reddish, round, smooth to the casual touch but not to feet stumbling suddenly across them. “Not that way! Not that way!” I hear myself crying from somewhere out of the picture—am I crying out to myself? But no other way is visible. There are only the cruel stones with little rivulets of clear water appearing occasionally, inviting but too narrow for even someone running barefoot.

That dream came sometime late Tuesday night or early Wednesday morning, in some interval between being awakened for  medicines or blood draws or vital signs or urgent trips  to the bathroom behind my IV pole.

Tuesday was a terrible day. Radation recall reaction was at full throttle. My scalp felt like alligator hide. My eyelids were swollen huge, with cracks in the middle that felt like crevasses; my eyes were running, excreting AraC and inflammatory fluids that pooled and hardened on my cheeks and in my eyelashes so that I woke with my eyes stuck shut. My ear canals were swollen and painful; I had mouth-sores from the chemo. My whole head was on fire. I felt like the terrible ruined creature who appears near the end of Madame Bovary, the blind beggar with the devastated face and running eyes, the specter of Emma’s doom, the terrible punishment for sexual knowledge meted out since Oedipus and Tiresias, the bogeyman of the blind: this is what’s in store for you if you don’t behave. That’s why they put Helen Keller on trial for plagiarism at the Perkins School in 1892: we can cast you out into utter darkness, young lady, and don’t you forget it. Dilauded helped some but not enough.

Anna’s dream fragment: Tinkerbelle, Disney version, is flying around my head, sprinkling fairy dust; I will be healed!

She calls me early Wednesday morning from Warsaw, Indiana, happy, telling me about the Tinkerbelle dream, and I am laughing with her, delighted at the lightness of the dream and the lightness in her voice, and she’s right: I do feel better! My head still hurts, my eyes are still stuck shut, my ears are still swollen, but I can hear that my voice is stronger and I can feel that I’m going to be OK. I think her dream and mine must have happened about the same time. Tinkerbelle is winning—clap your hands!

Must have been Tinkerbelle to the rescue on Sunday morning, but Tinkerbelle fiery, Tinkerbelle in mother-mockingbird mode, diving to ward off looming monsters with a rush of wings and stabbing beak. I woke up feeling weaker, tired, suddenly scared. I’m dying here, I thought, this can’t be right. I’m not getting better. And then, sitting on the toilet, feeling sorry for myself, I got it that I had to do something, I had to take action. I went back into the room and got back into bed and bust into tears, and told Anna that I had to do something. I had to start by eating some protein—I’d been on the “BRAT” diet (Bananas, Rice, Applesauce, and Toast) for, I don’t know, three days, three meals a day. No wonder I was getting weaker—it wasn’t just my hemoglobin count dropping and dropping, though that was a factor, too (in fact I got a transfusion later in the day). We had a war council—me and Anna and Gina, a friend from BodyChoir who had ended up spending Saturday night on the cot with Dillon while Anna slept in the recliner where I’m writing now and I slept in the bed. They both said in their different ways that they had been waiting for me to come to this, waiting for me to get angry, waiting for me to exercise some control. I needed to start by figuring out what I could eat, foods that would build my strength without upsetting my stomach or giving sustenance to the nasty bacterium in my gut, Claustridium difficile (C. diff),that put me here last Saturday just a couple of hours after chemo had ended and I had taken the pump off for the last time (this round, anyway).  Gina offered to go to Whole Foods and get me a protein shake, and I took her up on it; she came back with a concoction of soy milk, soy protein powder, and crushed bananas, plus a few vanilla soy yougurts, some oatmeal, soy milk, and blackstrap molasses. I called Elke, another BodyChoir friend who had offered her help’ she’s a nurse who works with complementary medicines and nutrition, and told her I had a lot to learn and would be grateful for any help she could give me; I’ll hook up with her after I get out of this place, probably later this week. Gina’s knowledgeable too, and Anna and I talked with her about things that would be good for my diet, things that would sustain me. Anna left for BodyChoir; Gina stayed another 20 or 30 minutes, urging me to allow myself the anger I had shown earlier, to go deeper into it, to feel it and use it. It was an incredibly helpful conversation.

There is no way out of this. The stones are rough, and I am going to have to run across them, stumbling and falling and bleeding and cursing and crying, Flaubertian demon at my back, Tinkerbelle circling—Anna, my fairy love, warrior princess, with me every step of the way whether she’s in Indiana or sleeping in the chair right beside me. And bands of angels, hundreds of friends, feeding our spirits, feeding our bodies, carrying us home. God damn it. This is going to incredibly hard. And it is going to be OK.


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