We were just told that a small spot near my moms tailbone may be cancer and the news was devastating. The doctor advised us also to go to the ER because my mom hadn’t slept for two days straight because she was in excruciating pain. She wanted to finish out her day of work which was only a little over an hour and a half. I knew burying her head in work was her way of coping and so as annoyed as I was I let her and say by and patiently waited. After a while she started to doubt the doctor and she convinced herself that the previous doctor who originally ordered the scan, was right when he said the spot was arthritis.
As soon as we hung up with the doctor who advised us to to go the ER, I sent my brother a text to let him know what was going on and that I was bringing my mom to the ER. I was very clear with him that my mom was in pretty bad shape and things were not looking good. I also hoped that maybe for once he’d show up at the ER so I didn’t have to be the one sitting there alone for the whole entire night. He answered me back, “we are in the city now. Let me know what they say.”. That was it. Of course he was in the city. It was 3:00 in the afternoon, wtf was he doing in the city? I asked my mom and she informed me that someone had given them free tickets to see a comedy show. I guessed that meant I was on my own again.
My mom finished out her day and clocked out of work around 5:00pm. She came in her bedroom and sat down. She was in such bad pain that she told me she just wanted to try to lay down for a few minutes. She couldn’t though. She was tossing and turning and moaning in pain. I gathered up a few pairs of pajamas and toiletries, because I had a very strong feeling she was going to be admitted. She was in so much pain that she couldn’t even really talk to me or my son. I had my husband come by and pick up my son.
I told my mom to take a pain killer before we left because I knew it was going to be a while until she would get one through the hospital. She was in the ER for almost 48 hours before they found a room for her. I also told her to take an extra one with her just in case. We took off and ended up driving alongside my husband who was going home. Thankfully my home is only 4-5 short miles away from he hospital. We got caught in some traffic and I noticed my mom was dosing off but any jerky movements of the car would wake her up. She started mumbling things and saying things that didn’t make sense. I couldn’t tell if she was awake or sleeping as I watched her nodding in and out. It was pretty scary and I don’t know why, but it wasn’t until I got to her house that day and I realized how really bad of shape she was in. I had been to her house every single day for the two weeks leading up to this day and while I knew things were bad, it became even more clear that they were even worse than what I thought. She was in really bad shape.
My mom was kind of hard to read at times and so I guess that’s why I’m the weeks prior even though we had spent all that time together, I wasn’t sure how bad the pain really was. I knew she had a high threshold for pain (all women do….no offense guys!) but sometimes she’d be dramatic about small pains and sometimes when she was in really bad pain she’d be silently suffering. I knew this pain was very serious though. I could tell because her entire affect was off. She just wasn’t herself and she was moaning, groaning and at times screaming because the pain was so bad an unbearable. I’d never seen her in pain like this before. Not even years prior when she had broken her ankle. We were having a porch built on the front of the house. The workers had just finished off a portion of it and so she walked outside to see it. She opened the front door and to the edge of the porch where there was a piece of contact paper (kind of like the waxy paper that stickers come on) and she slipped right off the porch and landed almost in a kneeling down position, sitting on her ankle. She screamed really loud and my dad and I ran outside to see that she couldn’t get up. My dad thought she was being dramatic but she couldn’t walk on her leg or put any pressure on it. She crawled back into the house and sat down. The whole night she was crying in pain but my dad refused to bring her to the ER. I was just shy of 16 years old and I remember feeling so helpless. I just wished so badly I could bring her myself. The next morning when she woke up the pain was even worse. My brother was home and had his license and so she begged him to bring her to the ER. Sure enough she had fractured her ankle pretty badly. That was something I never forgave my dad for. He never even apologized to her. Because of her transplant and all the medications she took her healing was extremely slow and she had developed a blood clot in her leg. Nothing was ever easy for her.
I got her out the car, found a wheelchair and I wheeled her into the ER and drove over to the parking garage to park my car. It was about 6:00pm when we finally got to the hospital. When I got into the waiting room she was just sitting there in moaning and groaning in pain. We waited as we watched more and more people pile in. I knew it was going to be a long night. At about 6:30 my brother called her to check in. He was in the city at a comedy show. She told him she was in severe pain and couldn’t even really talk. That was the last heytime he checked in for the rest of the night.
After and hour or two of waiting they finally got her in the ER. They gave her a dose of dilaudin, a powerful opiate pain killer that’s actually stronger than Morphine. I hoped it would give her some relief but it didn’t. She was still screaming in severe pain. They had her seated on a gurney but they needed to lay her down so they could do an EKG to rule out heart failure. The dilaudin didn’t even slightly help her pain. She was screaming every time anyone touched her. She was also highly agitated and so she was being mean and yelling at the hospital staff. I never felt so helpless in my entire life. I wished so badly I could take her pain away. She just couldn’t get comfortable and so every two seconds she was asking me to move things around to try to get her in a comfortable position she’d be ok for a few seconds but then it would be like an electric shock of pain went through her body and she’d be screaming in pain.
This went on for hours. I had never seen someone in so much pain in my entire life, let alone my own mother. To this day the worst pain o had ever felt was the pain of moving after I had my c-section. With the way she was reacting, I think her pain was ten times worse than that. It was horrible. They couldn’t even do the EKG properly because they needed her to lie down and lie on her back and she couldn’t. The only way she got any relief was by sitting straight up. She couldn’t lean back against anything and she’d scream in pain if she did. She couldn’t sit with her legs out in front of her because it was too painful and so when the nurse was trying to do the EKG she was yelling and screaming.
As the hours passed my mom’s pain wasn’t subsiding. Around 1:30 am I went outside to have a cigarette and call my husband to let him know how horrible everything was. My mom was so low on hemocrit (red blood cells) she needed two pints of blood. Her creatinine was in the 9’s which is basically toxic at that point. Her kidney was barely functioning, but what was the worst of all was her pain. After a 12mg fentanyl patch, the painkiller she took, the dose of dilaudin, you’d think by then it would’ve at least taken the edge off but it wasn’t even scratching the surface.
I hung up with him and went back inside to observe my mom sitting in the stretcher, slumped over, almost falling on the floor. She was silent and I didn’t want to disturb her but she easily could’ve fell over and cracked her head on the tile. She had enough problems going on, and so I gently awoke her and told her to lay back. As soon as did she yelped in pain. I was trying to talk to her but she seemed to be very out of it. Way more than she had been when I left the room a short while before. I tried to make her lay back but she was screaming in pain and she could barely speak. Something was wrong. Finally a nurse came in and explained to me that they had to do a test but she was refusing until they got her pain under control and so they gave her another dose of dilaudin and some Valium.
She was a complete mess at this point. She was in a half asleep, half awake state and couldn’t keep her eyes open yet she was still screaming in pain. At this point even the doctors couldn’t tell if perhaps some of it was psychosomatic. She had enough pain medication to take down an elephant. The problem with my mom was that she couldn’t even describe her pain. Some times it was a nerve pain like the shingles, other times it was a burning, or aching. Being a transplant recipient complicated the course of treatment. Doctors always had to out weight risks vs benefit not only for her but for her transplanted kidney as well. Something as simple as an NSAID pain reliever could cause huge problems for a kidney recipient. They wanted to try a nerve medication but they needed to speak with her kidney doctor first. By this point in time she was on about 16-17 different medications and so the risk for bad interactions is also an issue.
They sent in a doctor from critical care to talk to me because by this point she was completely unable to speak for herself. They were thinking of putting her in a critical care unit. I had reached a whole new level of concern. The doctor left the room and told me he’d be back shortly. I spent the next few hours trying to catch her before she fell of the stretcher because she was sitting straight up, on the edge of the stretcher practically falling off.
After a while she calmed down. It was a long, long night. One of the longest of my life. I never felt as helpless as I did in that moment, in my entire life. I felt like I was watching my mom get the shit kicked out of her and someone was holding my hands behind my back.I can honestly say that was one of worst nights of my life, if not THE WORST.
I sat back for a second when things finally quieted down some and started to think to myself. A slurry of thoughts ran through my head. “What the fuck did I just witness?”, I thought to myself. “What the fuck is going on?”. “Why the fuck do I have to deal with this?”, but more so, “why the fuck does SHE have to deal with this?”, then finally it hit me….my brother called to check in at 6:30pm. It was now 3:00am, and neither my mom nor me had gotten so much as a text to see how she was doing and so “I thought why the fuck am I here all alone?”.
I finally left the hospital that night around 3:30. I would’ve stayed if I could’ve but my husband had to be up and out of the house by 4:00am. I stayed as late as I could. I called my husband and when he answered I told him, “something doesn’t feel right and I don’t feel right leaving her.”. He assured me that she was in the best place possible if something were to go wrong. He was right, but compared to our many trips to the ER in the months prior, I told him, “something just isn’t right this time…..something is different.”
(To be continued in my next post).