May 19, 2002, my husband tells me he has a terrible pain in his chest, right side. Feels like a muscle pull, maybe, but he spends the night sleeping upright. It feels better that way. The next day it's worse and the next night he sleeps leaning forward over a pillow so he can breathe.
Mike is really sick, has been for two years, but so much worse since October. His weight has dropped to 124 pounds; he's skeletal. His blood sugar's completely out of control and the pain from chronic pancreatitis is constant. Despite all of this, his gastroenterologist started him on Interferon and Ribavirin for Hepatitis C. It's the Hep C that's killing him, making a ruin of every organ in his belly, working out from the liver so scarred from cirrhosis that it's hard and barely working.
His pancreas is nearly calcified, the veins leading into the liver are enlarged and he has portal hypertension, a dangerous complication of cirrhosis. He's swollen with ascites, fluid building up in his abdomen. The spleen is huge and tender and he has gastric varices that are leaking slowly, keeping him anemic and weak and very tired. His platelets are extremely low, making the treatment for hepatitis a great risk. He sees his doc twice a week and has his blood checked weekly. He gets transfusions regularly, but they never help for long.
I mix his Interferon shots every Tuesday, following the instructions precisely, allowing the medication to settle and all of the bubbles to fade away. The drug makes him feel horrible, but he feels horrible anyway. He sleeps for days after the shot, but he sleeps all the time anyway. He can't eat, he's miserable, he's dying. I'm sure of it, that he's dying. I mix his drug every Tuesday. I give him the Ribavirin every day. I check his blood, give him his insulin. Sometimes I knock him out with Ambien if he's in terrible pain and nothing's working. I put him to sleep, I don't know what to do to help so I put him to sleep.
I try to put him to sleep when this pain won't go away, the one in his chest. It grows worse. He sleeps most of the day Tuesday after a terrible night, but wakes up around 6 pm and he can barely breathe. I want him to go to the hospital, he doesn't want to. He's been there a couple of weeks already this year, but the pain's worse, he can't breathe, and he relents.
I give him the shot first, though. The 12th shot of Interferon in this six month course he has to take for Hepatitis C, the result of a surgery in 1982 or maybe the result of snorting coke through a rolled up $20 passed around the table, who knows and what does it matter in the end? One method of acquiring this nightmare of a disease makes him an innocent victim and thus more worthy of sympathy. The other makes him a participant in his own destruction and makes his disease a shameful thing. Innocent or not innocent, he never signed on for this slow death, who would ever sign up for this, this horror?
We're at the hospital and the pain is excruciating. He has a high tolerance for pain, this man of mine. He's already on meds for chronic pancreatitis, now shots of morphine in the ER but they're not working, the pain just gets worse. X-rays, a CT, and a worried doc telling us there's a big shadowy thing on the right side of his chest. He's admitted by 3 a.m. and we spend the next 10 hours in a room with no information, with him fading in and out, he's out of his head, struggling for breath even on oxygen.
He's whisked away to the pulmonary lab at 2 p.m. and more tests. My childhood friend, now one half of Mike's ace medical team, holds his hand through the procedure of having his chest punctured to draw out the fluid from a pleural effusion. Suddenly he's back, he's coherent, alert. Still in pain, but he's back as the result of finally being able to breathe. He looks at me and I can see him. He sees me and knows me and I feel a rush of relief.
Brad tells me what's going on and says that this should help as long as it's not an empyema. Empyema, what the hell is that? It's a big clotted solid mass of infectious crap accumulating in the chest. Not to worry, though, it's something we rarely see and usually just in street people and folks without medical care. We haven't had one in the hospital in over a year. We'll do a chest tube to drain and he'll be fine, he's already better.
Children in white coats come to his room to puncture his chest and attach a pump to drain his chest of fluid. All is well, everyone's cheerful, his daughter stays for a bit while I run home to feed the cat, shower, change clothes. We have had angels from AA at the hospital all day, just there, praying, letting me know they care. At home I find a cooler with food and cards stuck in the door and flowers. It's a comfort to be loved when I'm scared out of my mind.
I'm back at the hospital in an hour, encouraged, hopeful. Mike's smiling, says the chest tube hurts, but he feels a lot better. There haven't been any nurses come by in hours. He needs a pain pill and is worried about sleeping. No nurse. Where are the nurses?
Another 90 minutes and still no nurse, though plenty of promises. He's seeming more agitated and restless. I give him his regular pain pill from the bottle in my purse and he asks for an Ambien so he can sleep. I go to look for a nurse because he doesn't look good. Nothing's coming out of the chest tube and he's not looking good. When I try to talk to him, he's not making any sense. The nurses promises to come. I go back to the room and wait.
This goes on and on and on. Two techs come and check his vital signs. I am watching him, knowing something's wrong. I ring for the nurse and an aide comes, looks at him, says he's just agitated because of the pain and it's almost time for more pain meds, don't worry. It goes on and on and on. I don't know what to do and I don't know if I am crazy, but he looks wrong, he's mumbling and moving around on the bed, when he opens his eyes he has this crazy unfocused look. I try to get him to hear me, to see me, and he doesn't. Something is wrong. Where is the fucking nurse?
Again I go to the desk, now I am agitated and crazy because no one is listening to me. I find the nurse in a side room bent over a chart. It's 2 a.m. and I finally convince her to come look at him. Just look at him. I run back to his room and stand in the door to be sure she's coming. She's dawdling along, it feels like a fuck you to my concern.
She walks in and I'm telling her again this is wrong, there's something wrong and she lifts his eyelid and whirls around and runs to the nurse's station. She runs back. Runs. This bitch I couldn't get to come to the room for hours is running. She has a pulse oximeter and she snaps it on his finger and it reads 50. Fifty. His blood oxygen level is 50.
She yells something over the intercom and suddenly the room is full of people and someone puts a tube down his throat and someone's squeezing a bag and I hear heartrate 196 and someone's on the phone with the doctor and I am standing in the corner watching all of this and thinking even if he lives I have just lost my baby. He will never be the same because I've sat by his bed thinking something was wrong and not knowing and trying to get help but did I try hard enough? and his blood oxygen has been half of what it should be, half, and I have done nothing, I have let this happen. If he lives this has ruined his brain, it's been hours, he is gone and I love him and he's gone and I let it happen, I watched it happen, I sat right here and watched.
Something clenches up in my chest and I feel as if I can't breathe and they take him away to ICU and I ask one of the nurses if he will be okay and she looks away and says I don't know, there's no way to tell, I'm sorry. The clenched thing in my chest shatters and I can't quit crying now and it will never stop, these tears, because I let this happen. I watched.
More to come in "how i learned to love a dog, part 2."
Labels: heartbreak, love, relationships, sick husband