Abbot Northwestern is nothing like HCMC. The entrance looks like a hotel; a really expensive hotel. The lobby is huge with open escalators and walkways to the second floor. Little shops line the walkways. Little clusters of furniture are arranged around the open atrium. Each cluster has some combination of chairs, sofas, lamps and coffee tables. The colors are rich and dark. It’s a beautiful place. There’s a huge salt lamp against one of the pillars.
A salt lamp looks like a huge chunk of rose quartz glowing from the center. This one is the size of a 5 gallon bucket. I knew what it was only because I saw one like it in a catalog. Well that, and it had a little plaque talking about whoever donated it and how wonderful salt lamps are. When I told Jenny what it was, she didn’t believe me. We waited in the lobby for Patrick, so he wouldn’t have to find his way up to my mom’s room by himself. He’s pathologically disoriented.
Things to talk about are at a premium when you are dealing with a serious illness. They were with my family, anyway. We told Patrick he had to see this salt lamp. He looked at it and said, “It’s cool, but it isn’t really salt. They probably mean like mineral or something, not like a real block of salt.” I shared my extensive knowledge of the negative ionizing properties of salt lamps, and said it must be a Real Live Salt Lamp or they wouldn’t say it was.
Jenny’s very sensible. Sometimes overly so. She can remember the price of anything she’s ever bought. She’s also very proper. She almost never talks too loud or dresses out of style. She’s the only white sheep in our whole family. So when we headed for the elevators and she ran back and licked the salt block, Patrick and I almost wet ourselves laughing. Then we remembered we were in a hospital and got thoroughly grossed out.
She says they’re made of real salt.
Things are funnier when you’ve been worrying all day.
My mom went in for Surgery early in the morning. I got there about 8am. Erin was there, Renee was there, Jenny was there, Ramon was there. Patrick , Tim, Martha, Bart and whoever else showed up later in the day. The surgery was supposed to be done by 1pm. They give the family blinking, vibrating beepers to keep in touch. If there’s a development, they alert you.
About noon they beeped us and the surgeon came out to give us an update.
He had good news and bad news (but you knew that, right?). The bad news was that they had to give my mom a colostomy. This had been a possibility but not a certainty. It was one more thing to have to deal with emotionally, physically and logistically. But we steeled ourselves, we’d just deal with it.
My mom’s life philosophy was, “You just do.” How do you deal with 4 kids under the age of 7? How do you make all your meals from scratch? How do you clean up a mess like that? You just do. We would just do. How do you handle losing everything piece by piece, all at once? You just do.
Saying there was good news was stretching the concept of good news if you ask me; but we take what we can get. The good news was that they had removed much, much more tumor material, more cancer, than they thought they would be able to. Because she had much more than they thought. She only weighed around 112 and he said he removed about 5 pounds of tumors. The reason they never saw actual tumors on the scans and X-rays is because there was so much that it appeared to be background.
He described it as a “carpet of tumors across her abdomen” and masses of tumors around her intestines and organs. But not in any organs. Good news, Bad news.
He drew pictures and answered questions. He would have to go back in and actually hook up the colostomy, so it would be a couple more hours of surgery. People in my clan were starting to wilt. We had brought water and power bars. But they were talking hours more. I for one, kept comparing my suffering to my mom’s. Such a ridiculous response, so pointless. I could stand a couple hours of low blood sugar if she could handle chemotherapy and surgery and everything else.
But when they told us she was out of surgery and would not be allowed to see anyone for at least a couple of hours, and when one of the nurses told us to go and get something to eat for gosh sakes, we decided to do it. Jenny went home and Ramon, Erin, Tom and I went to go get some food. We were exhausted, hungry and overwhelmed.
We sat somewhere that wasn’t a hospital, ate decent food, stared into space and made small talk. It was nice. But the heaviest burden for me was always the feeling that no matter what I was doing, I should be with my mom. It was a constant nagging that was only quiet when I was with her or on my way to be with her. It started whenever I left and got more persistent by the hour.
We got back to the hospital and they said she had already been moved to a room. It wasn’t a cancer ward. It was a back pain ward, but it was available, so they put her there. When we, en masse hit the 8th floor at Abbott, I could hear her. She was angry and loud. She was clearly in pain. But she was also very upset and irrational.
The head nurse might not have actually been a nun, but that had to be due to an error in processing early on. She should have been a nun. Big old glasses, shaped like a tank with breasts, short gray hair and sensible shoes. A complete lack of empathy and love for authority, the whole nun yards.
“Where were you?” “Are you the family?” “We’ve been paging you for over an hour, we did overhead pages twice.” That was the nurse.
“They’re lying! They said they paged you, but they didn’t. I want to go home. I don’t want to do this anymore. They won’t give me pain meds. I’m going home, where I can take my own meds. I can take as much as I want. This is bullshit. If they paged you, you would have come, you were here all day. Ramon, take me home. ” People descended on her as she tried to get up. No way could she get up.
First I listened to the lecture from the nurse-nun about how she would get pain meds as soon as they were approved. “She’s not due for painkillers for another hour. We can’t give her more than that without approval from her doctor. We are trying to reach him now.” “Isn’t there someone here on the floor who can approve it now?”
“No, the doctors on this floor are not oncologists, they’re blah, blah, blah…” Meanwhile my mom is getting ramped up, crazy, recently sliced from stem to stern, and obviously in incredible pain. I told her I was sorry, I didn’t know they had moved her. I would take care of it.
Imagine my whole family- my mom’s whole family standing around while the nurse and nurse’s assistants are talking in code to each other about boluses and bumps and overrides. Then sister Hairy Phyllis leaned against a wall, crossed her arms and addressed my family, “I just gave her some blah blah and it should kick in pretty soon here, but if she doesn’t calm down it will not be able to work. So I need every one here to just stop asking questions and be quiet and think nice thoughts for a couple minutes. Just think quiet, happy thoughts.” She dropped her arms and looked at the floor.
I thought happy thoughts for about 0 seconds and then I broke. I was pissed. “Ahhh, excuse me. I don’t want to think happy thoughts. The only thing I want to think about is getting my mom’s pain controlled. Maybe you and I can go outside and talk about this while every one else thinks happy thoughts. The only thing that will make me happy is getting something done. Now.”
Battle Axe breathed in through her happy thinking nose and we stepped into the hall. No amount of my trembling, inarticulate anger could get anything done. I had to know that. But goddammit! How could it be impossible to get pain control for a cancer patient? In 2005, when the people on the radio tell you that there have been ‘great strides in pain control’ and ‘no one should have to be in pain while they are in the hospital’, how could this be? With people who loved her and would fight for her, how could my mom be in this situation? In the most elegant hospital, where the elevators are lined in cherry and brass, how is it that this woman is in misery and no one can do anything? They had the cabinet and the key and the medicine. And they couldn’t break it out until they heard from one guy who was incommunicado. How could this happen?
The answer, unbidden and unwelcome, filled me with shame, with guilt, with anger and with sadness. It happened because we left. It happened because we weren’t there to make sure everything was in place before they moved her to this purgatory of a room, where there weren’t cancer specialists or cancer nurses. It happened because for an hour or more, there was no one to stand up and demand that she get what she needed. We were all gone.
She had needed us, asked for us, demanded to see us, asked them to page us on the PA and we weren’t there. We had sat useless for 8 hours while they cut her up, but when she came to, came fully out of the anesthesia, none of us were there. I took a big breath. I covered my mouth and nose, started to cry and walked away from the nurse. It’s hard to find a place to cry in a hospital.
I walked into the hospital room, my mom was starting to get some relief from whatever they could give her. I walked in and my mom saw my face and said, “Honey, what? What’s wrong?”. I put my hand on her leg and fell to my knees. My stupid, hungry, tired, selfish, worthless, bony, sad, overwhelmed, eating-in-restaurant, leaving-the-hospital, all-about-me, completely powerless knees, on the hospital floor. My tired,hot, heavy, salty, tear-streaked head on the hospital covers against my mom’s leg. I wailed. “Mom, I’m so-o-o, so sorry” She laid her hand, heavy on my head, and scratched my scalp a little, “Honey, don’t…”
Nurse wicked got the call she was waiting for and my mom got a bucket full of morphine with an Ativan booster. She begged forgiveness from the nursing staff once she felt better.
I am traumatized to this day. I know it wasn’t my fault. Part of me knows. Right?