Ede was my mom. She died about a year after this journal entry, which I wrote while she was in the recovery area, following chest surgery. I’ve edited just a bit, to make the medical jargon more understandable. Ray is my brother, and Sara is a cousin.
June 13, 2000
It’s almost 10:00 PM. Ede is being brought to the ICU, intubated. Her surgery was at 2:00PM, I saw her at around 5:00, she was awake, spoke to me briefly, groggy. At 7:00, the nurse came to tell us she had been re-intubated. Ray and Sara were here with me in the waiting room. The recovery staff had called in a pulmonologist to evaluate how she is doing, this doctor, Dr. Kariya, came in and spoke to Ray and me at about 9:00. Her CO2 is very high, her pH is 7.1. These are not good signs. She is acidotic because she cannot get rid of her carbon dioxide by her own breathing efforts. He seemed very concerned, but of course, he had never seen her prior to the surgery. She has been retaining CO2 for quite a while now.
The surgery was to plug up the lining or pleura of her left chest so that the space between the two membranes would stop filling up with fluid –pleural effusions, they are called. She couldn’t keep having her doctor remove the fluid every 2 weeks with a needle in the office, and with the fluid collection, she was having an increasingly hard time breathing. She was pretty uncomfortable. She made the decision for surgery without much prompting from me or anyone else. I admitted to her that I thought it was pretty risky, but I left it alone after she clearly had decided to go for it.
Ray and Sara and I had coffee in the cafeteria around 8:00 and after we spoke to the doctor, Ray had to go home to see about his kids, and then Sara left too. It’s easier, in some ways, to be here alone.
Just a few hours ago, I walked along with Ede, who was on a gurney, into the pre-op area and watched while she teased the young doctors and seemed almost cheery, until she dozed off with the help of a bit of versed.
I think about how it was with Jon, 7 years ago now, after he was in coma, and I was more or less, by default, in charge of making decisions for him. Once the heavy stuff starts it seems to take on its own momentum and now I don’t know if I can really speak for Ede. Her will to live at this level of acuity is stronger than my will to live without even being ill.
I think about that last phone conversation with Jon about whether or not to try a spinal infusion of amphotericin, the last-ditch idea of the neurologist, Josh, who had gotten to know Jon pretty well during these past months, and seemed willing to try anything. So Jon was asking me. I was afraid to say no. I was in the clinic working, the HIV clinic, when he called me. Maybe he hoped I would say no, but then again, he had given no signal that he was not willing to undergo more suffering in exchange for more time. I said, I guess it’s worth a try. He was counting on me to make the right decision. I was unable to trust my judgment at that point. It was probably a mistake really.
Later, I heard that he told Josh “that hurts” when the long needle entered his spinal column. He had undergone so many spinal taps by that point. And then. And then, before the infusion even completed, he lapsed into coma. Those were his last days, he was not responding, would not respond again. No more conversation, just me making all the decisions until he died and then for weeks after he died.
I was never sure if I made the right calls or did the wrong things. After we started a morphine drip, I increased the rate every hour. I knew the code on the IV pump. The nurse knew I was doing it, didn’t try to stop me. I increased it until he took his last breath. At that point, I had no qualms about nudging him a bit towards death.
Right now I have to let go and forgive myself for any mistakes I made at the end of Jon’s life or I will never get through this night. I am also remembering the last conversation I had with my father before he died. It was also over the phone, he actually died before I could get from Florida to Maryland to see him. During that conversation—a very surreal one—he asked me if it was “ok” with me. He was asking me if it was ok to die. I was 23 years old, what the hell did I know? People have always expected me to answer these big questions, I don’t know why. He never spoke again, after that phone call, slipped into a coma and died 3 days later.
I realize that I have no power over life or death. It’s not in my hands. I just wonder if I hold the right amount of understanding to speak for her. If I value life enough to want to prolong it when all I see is the suffering. All this trust people put in me, I know nothing really. Do I even know how to comfort?
The nurse, her name is Kelly, came to say that Ede is going up to the ICU and she will have the ICU nurse call me. I should go home. “She’s really stable.” She nudged me towards the exit sweetly. “Go home and get some rest.”