The Liver Journal
3/27/02 Pick up dry cleaning after 4:00 p.m.
I bought some tulips for the open house, I dropped Ralphie off, I went to the grocery store, I volunteered at the middle school; a montage (met with the Rome group), I picked up Kip, I took Kelly to Girl Scouts, I dropped off Kip at the orthodontist (braces on today), and Tony and I went to the doctor’s office. I never made it to the dry cleaners.
“Can Mrs. Baker please come in here, her husband needs help making a decision,” the doctor called out with a worried tone. At first I didn’t hear my name, and I felt sorry for the person they were calling. “Mrs. Baker?” The young doctor looked directly at me.
“A 2×3 cm mass on the liver . . . more tests.”
I dropped Tony off at the hospital for blood and lab work, met the Girl Scouts at Dennys, made arrangements for a babysitter, dropped Ralphie off. Returned to hospital.
Kids at school, babysitter arranged, piano cancelled. Thirty realtors tour house; a parade of well dressed men and women checked out our master bedroom closet as Tony and I sat in nearby chairs in shock and very scared. A beautiful spring day in the mountains. 11:00 a.m. Admitted to hospital.
A long day. Test results. Good news – an infection, not cancer.
105 degree temperature with shaking chills and nausea.
a.m. White blood count down. House wins, “House of the Week.” It will probably sell.
2:20 p.m. Tony sweaty and weak.
4:00 p.m Oprah – Miracle Show
4:40 p.m TB test, CT scan, draining puss out of liver abscess.
Me: I’m feeling much happier – who knew liver puss could make one happy. Tony says he will never eat liver again. I have never loved anyone so much in my life. I left for a few minutes to pick up a to go order at a Thai restaurant near the hospital. I was so envious of all of the happy, healthy people sitting together with their families. That’s what I want to be doing, sitting around a table with my family, eating good food.
Mom flew in to help. Need a list for stuff to bring to the hospital.
4:30 p.m. I’m feeling lucky and fortunate. One wouldn’t think (2011 note: Can you believe I actually used the word “one” in this journal?) sitting by my husband’s hospital bed that one would feel lucky. Lucky because this illness, whatever it is and as terrifying as it is, has scared me into being at peace deep down inside. The next time I’m feeling drained and empty, I’ll remember this moment next to Tony’s bed, the sun in my eyes, his fever 102, how grateful I am that he is alive. I’ll remember what death’s doorstep felt like and to be at peace.
Another roller-coaster day. Things were good, so I went home to say hello to the kids and get more underwear. Tony had a violent shaking episode while I was gone. Temp up to 103.7. Not leaving the hospital again. Rich and Annie called.
Compassion is probably one of the most difficult emotions to express. It requires stepping out of one’s comfy life and letting one feel another’s pain and then making an effort to help that person through it. Everyone I know seems very compassionate.
The two of us standing in the elevator.
“How are you doing?” I ask.
He shook his head, trying not to cry.
I knew this elevator ride,
I knew this stranger’s deep sadness.
Confetti moments – not being bogged down emotionally by the day to day fodder of life. Not that all of that fodder doesn’t drift to it’s rightful place eventually, but why bother with nothingness. The next time something stupid gets to me, I’m going to think confetti.
This experience has me examining the rut I’ve allowed myself to fall into – not looking deeply into things. My goal is to not only live a full life with integrity, but also with compassion and loving kindness.
I’m worried about Kip, Kelly, and Ralphie. I don’t think I could stand to see one of my children in a hospital bed.
Everything will be okay, everything will be okay, everything will be okay.
Blood drawn, 27000 white blood count. At this very moment I’m not sure what will happen.
I can’t even imagine where I might be jolted to if Tony dies.
Please God. Please. Please. Please. Please!!
I’d rather it were me. Life would be nothing without you.
8:20 p.m. Tony is bleeding internally, they are giving him a blood transfusion.
Thank goodness they put the date on the white board in the room otherwise I wouldn’t know what day it is.
Taxes are due soon. Two weeks ago that seemed like a big deal. Today, a minor inconvenience.
The little boy on Oprah talked about “life storms.” An amazing little kid. What I thought were life storms were merely bouts with my own self-absorbed insecurity. I hope I never waste another moment of my time thinking about that. I hope we can avoid the eye of this storm, however, if we are faced with the fiercest part of the storm, I’m fortunate to have been given time to gather strength. I need to be strong. This little boy is giving me strength. This little boy, and love, and God.
I’m not the kind of person who makes deals with God or who believes in religion. I do believe that each of us has the ability to find strength from within by connecting to a greater good which I believe is love; I think of God as a collective soul.
I think most people go into bargaining mode when faced with what they think is a crisis such as a turbulent flight. Now, turbulence, like taxes, is a luxury. I know it will be okay.
It will be okay. It will be okay.
I’m Feeling a little angry this morning. Angry because this situation was preventable. So many mistakes. Days lost. The tube isn’t draining. The antibiotics are not working. The CT scan technician stabbed his liver causing the internal bleeding. Should we change hospitals? It’s my responsibility to bring my children’s daddy home. I’m feeling angry.
4:00 a.m. The new nurse threatened to make me leave in the middle of the night (no visitors after 8:00 p.m., but I have been here for several days and nights).
A little less than a year ago, I was waking up and writing in the early morning hours from a balcony at an Athens hotel. I’d wake up at 4:00 a.m., search for some thick American style coffee, sit with my journal as the sun came up over the city and the narrow streets below me came to life.
Now, I’m in a hospital room with my sweet, young husband who is fighting for his life. The shades are drawn, but I know just beyond the beige slats, the sun is rising and Mt. Tallac is a brilliant orange. I suppose the hospital corridors are coming to life behind me.
I’m so f__king tired. I’m afraid to go out and look for coffee. I’m angry at myself for feeling bad about feeling angry.
Everything will be alright. Hopefully, we will have a together nurse today.
Later: Had a little heart scare today. The nurses rushed in with a crash cart. The doctor seemed okay with it.
Lots of sleep last night. Tony felt like vomiting so they gave him medicine that makes him sleepy.
Hopefully, we will go for a walk/roll later today. Maybe the kids can visit.
More blood, vomiting. The infected clotted blood is preventing the tubes from draining. Surgery.
Tony is so sick. I crawled into the hospital bed with him before they took him.
The nurse came in and showed us her scar. She had a liver transplant. Somehow this made us feel better. (2011 note Tony did not have a liver transplant – he had several apparently unnecessary infected body parts removed along with a portion of his colon, and a few liters of infected blood).
Staring at the empty bed, my soul ached with loneliness. Let that sink into your gut, and I promise you the dirty dishes will never again be an issue.
My brother is here, and Tony’s sister and her husband. I walked to the meadow while Tony was in surgery. It was the first time that I left the hospital since he had the shaking episode. I couldn’t be here.
The doctor said things went well; there was blood on his shoe.
They listened to U2 during the surgery.
Tony is in ICU.
I think I am in shock. Tony is alive, but he is lying in bed hooked to a ventilator with a sheet pulled down to his waist. His beautiful chest cut open. It is almost too much too comprehend.
I have to sleep in the ICU lounge. I’m sharing it with a woman named Carol.
I keep checking the little window in the door of the ICU. I’m lucky I can see Tony’s bed. The night nurse hasn’t left his side. Every time I check, the nurse is standing in front of Tony’s bed, holding a Styrofoam cup, watching the monitors.
Tony is doing great. WBC to 18000. We have so many people to thank.
He has tubes in his nose, at least four bags coming out of his sides, and several IVs. He has an enormous seven shaped scar across his belly. His face looks quite beautiful.
Temp slowly going down – 102.
Me to nurse as she turns the pump knob up, up, up . . . : “You know that is his morphine pump, right?”
Nurse, fumbling with mishmash of tubes, “I would have figured it out.”
Nurse (a different nurse) “Shit!”
Me nervously, “That didn’t sound good.”
She thought there might have been a metal tip at the end of the PICC line she just pulled out. It felt a little disastrous until they determined there wasn’t a metal tip floating around in his blood stream.
I left the hospital for three hours today. It totally stressed me out.
Ralphie had a piano recital – I cried all the way through.
I paid the taxes and the insurance bill. We are self-employed so I had to write several checks. Luxury.
I didn’t write yesterday because I was afraid to feel happy and secure with the news that all is going well. I rely on the morning lab results for my happiness in the same way I used to rely on the scale. I really have a lot of work to do as a person. (2011 note – yep).
Last night a group of people came into the ICU lounge. They were using a lot of profanity. They were angry at a nurse who had not shown them compassion. How do nurses do it, day in and day out?
White blood count 13,000
White blood count 21,000
Russell died – Carol’s husband. He had a massive heart attack. The pain and suffering in this place is almost unbearable. Next door a little boy is getting a PICC line put in. He is crying out in agony. It is heart breaking.
CT Scan – Good white blood cell count
The realtor called. The house we bought has received a higher offer – we have two days to remove the contingency of selling our house. It’s a good thing I have perspective right now. I told her to let it go.
CT Scan results not good. he’ll need surgery to install a Gashant for IV drugs at home.
We are out of ICU in a regular room. There is a snow storm in the forest. Our room overlooks the woods. In those woods is a campground. I lived in that campground when I was 15. Someday when this is over, I’ll have to sit down and figure out how the girl who lived in a campground came out of the woods and into the light – a light so bright that nothing short of death could keep it from glowing within. So lucky to have found such a kind and loving person to share my life with.
Tony gets the Gashant installed today. Ralphie and Kelly are sick, Kip has a concert and needs his black and whites, the realtor is coming to the hospital because we have decided to make an offer on a different house we really wanted that came back on the market this week.
Today is the day we might leave. We will leave as very different people. For some reason “conscious sedation” comes to mind; the medicine that makes you forget all of the horrible things that happen to your body during the various tests they take to determine what is wrong with you.
Today, they told our hospital roommate, Phillip, a 35 year smoker who came in worried about a heart attack, that he has a mass in his lung. One cannot possibly know the depth of fear one experiences when one is told there is a mass anywhere in one’s body. Tony’s mass was treatable, curable; complications made it a fight for his life, but he had hope, he had a chance.
Russell lost his battle; Carol left the hospital without her husband of forty years.
I hope I will remember the lessons I have learned during this experience, to let my heart guide me to do what is right; to elevate myself to a level where I consistently maintain a deeper, more profound perspective of my role as a mother, daughter, wife, friend, and human being. I hope as time passes conscious sedation doesn’t set in.
Fast Forward Almost 10 Years. . .
Tony was sick for several months after we left the hospital. He rarely left our bedroom. He looked like a skeleton sitting in the bedroom chair day in and day out. I kept a sporadic journal during those months. Mostly expressing my gratitude for simple pleasures, even squeezing the puss down the three drains he had (for a brief moment, I even thought about becoming a nurse, but I have a horrible memory and I could just see me entering a patient’s room, looking around, and then blurting out, “Why did I come in here?”).
We bought our dream house, raised our children in it, and when they were teens, we banned them from the cool party room above the garage. They’ve all gone off to college, and now it is just Tony and me (anyone want to buy a house?).
Phillip died six months after being diagnosed with lung cancer.
I’m listening to Tony snore as I write this and feeling grateful.