Why I cannot sleep
Week in review
I haven’t slept very much these past days, though sleep has come in mere seconds. Standing up. Sitting down. Waiting for a drink to fill from the tap.
Most of the time, it is for minutes, an hour, maybe two. It’s been six days I’ve spent at the hospital, but it feels more like one very, very long day. Without sleep, the days and nights have lost their compass. There are too many hours, not enough minutes to go round. I stand. I sit on the toilet with a giddy cigarette. When I walk, my limbs are warm with the glimmer of consciousness.
This dizzying half-wakefulness.
In the last 24 hours, Rusty’s condition has deteriorated. Although his blood work came back satisfactory, the disorientation from the drug has intensified, cheating him of present reality.
Boxed in a hospital room at New York-Presbyterian, he thinks we are in North Carolina, at an elaborate, colorful circus show. There are land-angry Indians knocking at the door. He is begging me for another dose of IL-2. “I don’t want to die,” he pleads with the doctor. Minutes later, he is tugging at his IV tubes, struggling to stand, asking to go home.
My hero is stuck in a dream of demons, and while I cannot reach his mind, I do my best to nourish his body. There is always something to see to. Some event on the brink of emergency. Water he wants but cannot reach. The walk to the bathroom when his legs cannot hold his weight. The vomit, the stained sheets, uncleaned hands.
He is taking longer than usual to re-orientate because of the tumors in his liver. “His liver is in bad shape,” said Dr Kaufman. “It will take some time to metabolize all the bags we gave him. Let him sleep. We’ll keep him here for another night if we have to.”
While another night makes little difference to me, I am aching to go home.
I want no more tricks and fantasies, but the solid hearth of my lover’s chest, breathing into mine. I want sleep in its circadian comfort, days and nights that stay in their respective skies. Maybe that will be tomorrow.
February 12th, 2007 at 2:40 pm
I am sorry to hear it’s taking longer than expected to recuperate. Stay positive.
I also want to tell you how much I admire you and how you have touched my heart with your story and your strength.
Jesse is truly lucky to have someone by your side and you are lucky to have found a love like Jesse’s.
Stay strong!
February 12th, 2007 at 4:51 pm
I pray for strength and healing for both of you. And sleep; sweet, dreamless, the two of you in your own bed, sleep.
February 12th, 2007 at 6:10 pm
May he be home soon, so that the true healing is able to begin. And the two of you continue your journey into the future!!!!
HUGE bear hug
February 12th, 2007 at 8:55 pm
I also send all the strength and healing prayers/thoughts I am able. And, in my own way - with my own faith, I’m standing saying: “No more! This is just not right…he needs to heal!”
HUGE bear hug
February 12th, 2007 at 9:23 pm
I know it’s tough but you need to try to get some sleep in between. You will need to keep your strength up for the both of you.
February 13th, 2007 at 9:50 am
My husband is just starting. Second bag this morning. I hope I can be as strong as you.
The doctors also told us that the CTLA-4 drug and IL-2 can have a complementary effect. They have patients that did the CTLA-4 first and after IL-2. They are both responding better than others.
You are in my thoughts.
Thank you for posting.
February 13th, 2007 at 9:56 am
Hang in there heroes…
February 13th, 2007 at 12:37 pm
Hey Yen, take care of yourself.
You continue to amaze me with your strength and love.
April 20th, 2007 at 9:03 am
[…] We grasp at straws. “What about a liver resection?” Jesse asks. Dr Sherman shakes his head. I push on: “Abraxane? Avastin? Gleevac?” […]