October 18, 2016 will go down as one of the worst nights of my life. Bringing my mom to the Emergency Room that night changed everything in my mind. I was really starting to lose hope. My mom was in really, really, really, bad shape. Sleep wasn’t really happening. It was already almost 4:00am by time I got home and settled. I sat outside on my porch as the horror of the night replayed as a loop in my head, over and over again. I had so many emotions going through me. I was scared, upset, confused and even angry. Angry for many reasons. Angry that I couldn’t help her, angry because she had to suffer but most of all I was really angry with my brother for once again, leaving me and more importantly her, high and dry.
During the 25 years my mom had her transplanted kidney, she had good health. There were a few, very minor hiccups along the way and a few times we had to visit the ER. Even when my dad got sick and was going through his chemo and radiation treatments we had visited the ER many times. No matter which parent our ER visits were for, one thing was consistent. We were all ALWAYS there. My brother always came. During my dad’s illness my mom, my brother and I came together and became an amazing force. I had a support system. Things changed though, and I felt very alone.
Now some people may find what I’m about to say to be a bit distasteful and to be honest, I’d probably feel the same if I didn’t go through what I did in the years prior to my mom getting sick. As I sat on the floor of the ER that night, I couldn’t help feeling a little resentful towards my brother who was in the city watching an Amy Schumer, comedy show. Here I was watching something that was scarier than any nightmare on elm street and he was in the city laughing. Laughing was the last thing on my mind that night. I spent most of that night in a state of panic. I cried a lot that night. I think it bothered me even more that I knew the tickets he got were free. If that were me and my brother had texted me to let me know that my mom was in really bad shape and was going to the ER, I probably would’ve just skipped the show and headed home. I don’t think I would’ve been able to sit there with a clear conscience and listen to a bunch of stupid jokes. That’s where my brother and I differ greatly.
Anyway, I was so angry and I felt like I was being punished (obviously my mom was being punished far worse than me) and once again, it’s ME to the rescue. I often think what would’ve happened if I weren’t around? Would my brother step up his game because he had no choice? Was I enabling his irresponsible behavior by being the one who always came to the rescue? I got so angry and so I decided to take a few short videos of my mom while she was moaning and yelling in pain after having two doses of a powerful pain med, dilaudin and one dose of Valium. I wanted him to see what I was dealing with. I wanted him to understand how serious it was. I felt wrong taping her suffering, but I just wanted him to understand. I wanted to spark some human emotion in him. He never answered me back.
If he couldn’t come there, fine. I mean I get it, sort of. He could’ve at the very least called and checked in at some point during the night. I’m sure he had to take the train home and had time to shoot out a quick text. There’s no excuse. People can argue and say I also could’ve updated him and let him know what was going on, and they’re right, I could’ve, but at this point I was done enabling his behavior. If he cared he would’ve checked in. In today’s day in age there is just no excuses. It’s just like when he doesn’t answer text messages. He has the god damn Apple Watch. There’s no excuse. We know he sees his texts. He wants to act like he gives a shit but only when it’s convenient for him and I’m sorry, but it’s infuriating. Especially when you know how a person normally operates and you know his lack of regard for our mother isn’t normal for him. He was never the most helpful son but he did at the very least, have care and concern for my mom, through the years.
I have to put some of this on Satan too. Nights like these only helped to solidify that her concern for my mom was limited and phony at best. My mother-in-law was hospitalized this past year as well. My in-laws live out of state and have since my husband and I started dating and so I don’t have a very close relationship with them like he did with my mom, but nevertheless I love them and when I found out she was in the hospital, I must’ve asked my husband for hourly updates the whole time. I wanted to know what was going on with her and make sure she was ok. Sometimes men need a push with things like that. Me asking him will push him to get updates from his dad or his sister who are there with her. The fact that NEITHER of them thought to check in that whole night, it goes to show what kind of people they are. They come first always. Their good times trump everything else that’s going on.
I managed to get a few winks of sleep that night but as soon as I lifted my head off the pillow in the morning, my heart started pounding and I started looking for my phone to see if I had a call or text from my mom. Other times when I had brought her to the hospital I’d wake up to see a text about what was going on. This time there was no text and so that worried me a little. I didn’t want to wake her up if she was sleeping. I knew she hadn’t slept in days and so I figured maybe she was finally getting sleep. I sent her a text and told her to call me. In the meanwhile I rang the desk at the nurses station. They told me she was sleeping but due to HIPA laws they couldn’t disclose any further information.
I was stuck between a rock and a hard place. My son had school that morning but I didn’t bring him. I was far too tired. This is why being an adult sucks at times. I wanted to be with my mom. It was all I could think of. If I didn’t have my son I would’ve went right back up to the hospital but I had to think about him. I was seriously traumatized by what I had witnessed that night and with that said, I didn’t think it was a good idea to bring my son up to the hospital to see his grandma like that. On such short notice, I didn’t have anyone to watch him either. At around 10:00am I got a text from my brother asking me if she got a room yet and informing me that he was going to go see her at his lunch hour. It was better than nothing I suppose and I at least felt some relief that someone would be there, at least for a short time.
I eventually heard from my mom. She told me she was still in pretty bad pain but they were staying on top of it and she was able to get a little sleep here and there. I told her I’d be there as soon as my husband got home from work. It was around 3:30 and I believe she text me and told me not to come because they were taking her for a few tests. I got back to the hospital later that evening and she still wasn’t back in the room. They had moved her from the regular ER to the Critical Decision unit. The nurse came up to me and asked me who I was, and told me that someone needed to go pick up her MRI results from the radiology place where she had them done. I didn’t want to leave again, but I had no choice. They needed my mom’s written consent that I could go pick the disk up.
They rolled her in right before I was about to leave and I had her sign for consent and I left. I got to the radiology place right before they closed. The girl handed me the disk. I walked out into my car and sat down. I looked at the envelope on my legs and took a deep breath before opening it up. There was a DVD with the images on it and a document. I pulled the piece of paper out and started to read. While it was difficult to understand, I got the feeling it wasn’t good. I didn’t want to say for sure and so I took a photo of it and headed back to the hospital.
I walked into the CDU and over to the station where my mom was and sure enough there’s my brother, Satan and their one and a half year old baby. Why the baby needed to come, I will never understand. I explained to my brother how bad things were the previous night. I mean he could see for himself. Why Satan couldn’t stay home with the baby while my brother went and spent some time with my mom, is beyond me. The ER isn’t a place for a baby to be running around in. The only time my brother was allowed to come alone was during his lunch break. I guess because there was a time limit. Satan probably doesn’t like the indefiniteness of time that comes with an after work visit. If he goes alone, she cannot control how much time he spends there. When she’s with him she can make an excuse (as she always does) for why they can only stay a short period of time.
I didn’t want my brother or Satan to see the printout that came with the disk and so I snuck by and handed it over to the nurse. The last thing I needed was for them to read it and scare my mom. I thought it was best if a doctor gave her the results. I didn’t even want to say anything about it myself. I excused myself to use the bathroom and when I came back they were all gone. Sure enough they had finally gotten my mom a room on floor 12. I went up to the room and by time I got there my brother and Satan hung around for about ten minutes and then Satan made her usual excuse that the baby was tired and they all left. I stayed with my mom until about 11:30 pm. They still hadn’t gotten her pain under control fully.
I went home that night and got a pad and a piece of paper. I sat at my kitchen table and pulled up the photo I took of the paper that was with the MRI disk. I had to interpret the medical talk, and so word by word I went through it and googled everything that I didn’t understand. When all was said and done, I finally knew what was causing my moms excruciating pain. She had a cancerous tumor on her sacrum (tailbone). It was pushing down on her sciatic nerve and all the nerves going to her legs. It had also expanded between two of her vertebrae and were pushing on the sac surrounding her spinal cord. On the report it said it had caused a fracture in the bone as well but they later seemed to think that wasn’t the case. Either way, that explained why she was in the incredible amount of pain she was in. At that moment I knew shit was very serious and very bad. Once cancer spreads to the bones it is considered to be in stage four, incurable and untreatable. “Holy shit!”, I thought, “this isn’t good.”.
From that moment on it was pretty clear where things were headed. I hated knowing this. I wanted so badly for it to be wrong and part of me hoped it was, but the more rational part of me knew what reality was. I didn’t know what to do with this devastating information. I was so upset and so I decided to reach out to someone who was closest with my mom……my aunt Debbie. I shot her a text and in the text I had apologized for everything and told her shit was serious now, I explained what I had just interpreted and told her that we just needed to be there for my mom. I wasn’t too surprised when she wrote back. She told me it was ok and that she was really worried about my mom.
About two weeks prior to my mom’s hospitalization, my aunt Debbie took her on a road trip. I will forever refer to this trip as “the guilt trip”. Aunt Debbie had found this really cool, eclectic hotel in upstate NY and she thought it was right up my mom’s ally. To be honest, while Aunt Debbie provided great emotional support over the phone to my mom, that’s about where her help ended. She hadn’t come out to my mom’s house,but one time the whole summer and that was just to take her to dinner. She helped out a little in the very beginning of the year by bringing my mom to a few doctors appointments but after I had written her that letter, she was no where to be found. She didn’t spend any time with my mom at all. She came to visit a few times when she was in the hospital in August and that was it and so when she planned this trip, I believed it was out of her guilt, because she knew she should’ve been spending more time with my mom. I’m not going to lie either, I thought it was pretty irresponsible for her to even bring my mom on this trip. She was in bad shape. Remember that this trip took place about two weeks before I brought her to the ER. My mom was having trouble breathing again and was in pain. I didn’t think she was in any shape to be hiking around or sight seeing. God forbid something happened and my mom was hospitalized four to five hours away from home. What would I do? At the same time, I knew my mom needed to get away and it was only for one night. She needed to get out of her house, and so I kept my concerns to myself and just hoped for the best. She was in such bad shape though, I had to pack her bags because she couldn’t even do it herself. She laid in her bed as I scrambled around her bedroom and bathroom gathering all the stuff she would need.
Aunt Debbie told me that she realized how bad of shape my mom was in when they went on that trip. I was glad we were able to talk again. I knew that me and aunt Debbie being on speaking terms again was going to make my mom happy. I am a huge believer in that your mind and overall mental wellbeing plays a big role in your physical health and whether or not you can overcome things. Being upset, stressed or depressed will only exacerbate negative symptoms and so I knew seeing her family United was going to give my mom the push she needed to get through this. I didn’t know how long she had left but whatever time she had, I wanted to make it as pleasant, harmonious and peaceful as possible. Unfortunately though, I was the only one who was thinking that way……
(To be continued in my next post).