It was known that my mom had cancer back in December of 2015 but we didn’t learn about what kind of cancer it was until March or April when her pathology report came back. She received no treatment from then until she was in the hospital. Absolutely NOTHING was done. Having a serious illness like cancer exposes how corrupt and flawed the healthcare system is in this country. My mom had her surgery February 10, 2016 to remove and 8″ mass that entombed her kidney. She was supposed to go up for a follow up scan in June and the to the doctor a few weeks later. These oncologists are always over-booked and you cannot get an appointment for weeks. The hospital she had her surgery in was a completely different hospital than the one she was for her August stay (and the one I’m currently speaking of). I know she missed at least one oncology appointment earlier in the year because she was hospitalized a few times throughout the year. It wasn’t until Sept, 2016 that she finally got an appointment with an Oncologist and treatment options were actually discussed.
The doctor originally prescribed her a fairly new chemotherapy drug called Votrient. It came in a pill form from a special pharmacy. It was going to take about two weeks time to get everything worked out with her insurance and such. She finally received a letter one day that her Insurance company denied coverage of the drug. They said it was because she had not had any other form of chemotherapy treatment prior which was one of the prerequisites for approval. Total bullshit. The kind of cancer she had, (papillary Type 2, kidney carcinoma) didn’t respond well to many other treatments and the doctors said that many people are reporting good results with this drug.
Regardless, the doctors had no choice but to try another drug to treat her cancer. That drug also was going to take about two weeks to get here. Although I was pretty sure chemotherapy wasn’t going to help her that much at that point in time, I still couldn’t believe the long delay in getting the drug. It finally came in. My brother was at the hospital early Saturday morning and my mom got a phone call her her doctor’s assistant who told her the drug was being delivered the following Wednesday. Since they were there, they volunteered to take the delivery. I called my mom minutes after this happened and she informed me that her chemo drugs were being dropped off at my brother’s house with their “nanny” (Satan has to be a pretensions and call her babysitter a nanny….it’s a babysitter). I told my mom that was crazy. I was home all day and I could’ve picked them up. Besides, at this point in time after she was so worried about whether or not my mom had a healthcare proxy, I did not trust Satan whatsoever. Again, maybe I watch too much Dateline and 48 Hours, but how do I know she isn’t trying to kill my mother? Money makes people do crazy shit! Maybe she wanted my brother to be the healthcare proxy so that when she poisons my mom, my brother can be the one to pull the plug and opt out of having an autopsy? Of course that is all very extreme but this day in age you never do know.
I text my brother earlier in the week to ask him what was going on with the cancer drugs. There was talk about my mom having to do some consultation with the pharmacist. I was under the impression that the new drug was coming from the same “special” pharmacy that the first drug she was prescribed, was supposed to come from. I asked my mom but at that point she wasn’t really able to articulate herself too clearly and on reality, she didn’t even want to talk about it and so I decided to get the info from my brother. I thought nothing of it as I have been the one caring for my mom for months now, I felt I had the right to know. I asked questions like when were they were being delivered, who was delivering them and if my brother spoke to the pharmacist because I’d like to know what side effects to watch for an thing’s of that nature. My brother was being very evasive and telling me to calm down and that he’s, “got it all under control.”, as if I was annoying him by asking questions about my mom’s medication. Chemotherapy drugs are serious shit. I just wanted to ask some pretty valid questions.
I went up the the hospital in the early afternoon. The plan was that once they got the drugs they were going to come to the hospital and give them to the doctor. My brother and Satan didn’t end up showing up at the hospital that night until about 8:30pm. No doctors are around at 8:30pm. Him and Satan did that a lot. They’d come up to the hospital so late and by that point in time, my mom was pretty out of it and she’d be ready to wind down and relax for the night. The had the drugs with them and they showed my mom the bottle and then Satan put it back in her bag. They stayed up at the hospital for a short amount of time and as they were leaving I told my brother to leave the drugs with me because I planned on being at the hospital after 9:30am, after I dropped my son off at school. Again he sighed as if he was annoyed and he ran down the hallway to get the drugs from Satan. That night I text him and told him that in the morning I’d go to the hospital and have them page the doctor before hand, this way he didn’t have to waste his lunch break waiting around for a doctor. I also thought it would leave us both more time to ask the doctor the questions we both had. He never answered me.
The next morning he text me back around 9:00am and told me to just page the doctor early. The exhaustion of the previous week and a half had finally caught up with me that night and I slept like a log right through my alarm clock. I called my mom that morning and she told me her breathing was really bad and she didn’t want me bringing my son up because she didn’t want to scare him. She didn’t realize that he had already seen her bad breathing; dozens of times already. I told my brother that and so he told me to just drop the pills off at his job. I asked where his job was and then I started to express how worried I was, and how scary she looked and had been acting. He told me to just take it one step at a time and said she was on a lot of pain meds, which was true.
In the previous nights my mom didn’t want me to leave her. She was still having the panic episodes and she felt like she was struggling and gasping for air. I decided I was going to go to the hospital either way so there was really no point in driving to my brother’s job and so I decided to just bring my son to the hospital with me. I text my brother and he seemed to be annoyed. I didn’t see what the big deal was because he was planning to go up there for his lunch break anyway.
I arrived at the hospital and went upstairs. My brother followed shortly after. We walked over to the nurses station and asked if they could page the doctor. My mom was up in the dialysis unit. We walked down the hall and sat in this waiting room for the attending physician to come down. My brother was acting very weird. He told me I didn’t have to wait with him and that I should go up to see my mom. I got the sense that he was trying to get rid of me. He seemed annoyed and was giving me very short answers. The more he tried to get rid of me the more I wanted to stay. My son was trying to talk to him and he was hardly even paying attention. We sat there for about 20 minutes in this weird awkward silence.
I could tell my brother was starting to get antsy and impatient. He got up and walked down the hall. I saw him on the phone. He came back in the room and once again he was pacing. Finally he told me he was going to go downstairs and getting something to eat in the cafeteria. I didn’t realize this until later but he when he came back up he didn’t have any food with him and he wasn’t gone long enough to have eaten anything while he was down there. I really just didn’t get what was up with him that at that point but he was acting very strange.
After the doctor came and we asked him our questions my brother went up to see my mom real quick and I went outside to have a cigarette. I went up to see my mom. In the dialysis unit and stayed with her till they brought her back to her room. My husband was coming to get my son so I can stay and hang out with my mom until she went to sleep at night. She told me to tell my husband to come in. That was the first time he had seen her since the day I brought her to the ER. When he came a few hours later, I went downstairs again to get a drink and to have yet another cigarette. I was gone for about 10 minutes when I got a text from him saying to come back up because the social worker was in the room. A few seconds later he texted me, “Hurry!”. I got up there as fast as I could. I walked off the elevator and down the hall where I see my husband holding my son pacing up and down the hall, furiously. He came charging towards me and told me to walk with him down to the elevator lobby.
We get down there and he starts explaining what happened. He was sitting in the room talking to my mom when the social worker popped her head in and asked him if he was [my brother]. Before my husband could answer she was apologizing for missing their meeting that afternoon. They both looked at her, puzzled. My husband explained who he was and then my mom asked her what meeting she was talking about. Apparently my brother set up a secret meeting with the social worker earlier that afternoon, during his lunch break. That explained why he seemed like he wanted to get rid of me. He made no mention of any meeting as we waited for the doctor. He didn’t even tell my mom about it and so she asked the social worker why he wanted to meet with her. The social worker went on to explain that he wanted more information about the healthcare proxy. My mom was pissed. We had both already explained it to him. There wasn’t much more to be said about it.
I had never seen my husband as angry as he was that day. In 9 years never once was he that pissed off. He told me that should my brother come up to the hospital at that moment, he didn’t know if he could restrain himself from beating the shit out of him. He’s not that type of guy either but that day he was furious. He explained to me that after the social worker left the room my mom was upset and so she asked him to hand her, her phone and she called my brother to find out what was going on. She asked him what the story was with him and this healthcare proxy bullshit and why he’s making such a big deal about it. My husband said the next thing he knew was that my mom started apologizing to my brother saying over and over, “I would never do that to you.”. He could hear my brother yelling at her but couldn’t hear exactly what he was saying. He told me, “in all my years of life I have never seen someone go into a full blown panic attack like the way your mom did after she hung up the phone.” He said she started gasping for air, dry heaving and kicking her heels on the bed almost as if she was having convulsions . He ran out of the room and got the nurse because he got so scared.
It was clear to ANYONE who had seen my mom during the prior week that she was in pretty bad shape. When she went into the hospital this time I knew something had drastically changed. She took a turn for the worst and so at that point in time, for me at least, I had to accept things the way they were. I was trying to do whatever I could to alleviate that stress and trying everything I could to not add more. Especially that week because I knew she was going into these panic episodes where she felt like she was gasping for air and couldn’t catch her breath. When I was there I tried to keep convos airy and light because I didn’t think she needed anymore bullshit . Every time a doctor walked into the room he delivered bad news. Several times that week she asked me if she was dying or expressed to me that she thought she was dying and there was no hope for her. I told my brother all about it and couldn’t believe he was doing this to her. I tried to put myself in her shoes. If someone keeps harping on my healthcare proxy, I would think it was going to make me think I’m dying, especially since they were going about it in the completely wrong way.
I understand that when someone is that ill you need to have those really uncomfortable conversations. They are the kind of conversations you dread having. It’s also normal to be curious about the persons will, their affairs and what’s going to happen if and when they do die, but there’s a way to have those types of conversations. You must approach it as delicately as possible. By that point in time I almost felt like it was too late plus I could tell my mom wasn’t interested in having those convos. I was advised by a family member that I should have that conversation with her, months prior to her being in the hospital but I just couldn’t bring myself to do it. After seeing how upset she got that day at the oncologists office when my brother (stupidly) asked how long she had left, I knew that I was going to have to accept things they way they were.
My brother was always manipulative and he knew how to get his way and especially with my mom. I will never forget my dad saying to me that my mom fucked my brother up by giving him everything he wanted as a kid. He learned that he can control her by throwing fits, stomping his feet and yelling. My husband said that’s exactly what my brother was doing that day. He was throwing a tantrum and trying to make my mom feel guilty. My husband was disgusted to see a grown man treat his mother like that.
The nurse came down the hallway looking for us. She also had witnessed the panic attack and she asked me if I wanted to have my brother put on a “restricted visitor ” list. I told her it wasn’t necessary and that it would upset my mom too much, and that’s exactly what I was trying to avoid. We walked back to my mom’s room and acted as if nothing even happened. My husband said goodbye and I told her I was going to walk him downstairs. I was so angry, that I almost felt paralyzed as my husband repeated the story in better detail as we stood next to his car in the parking garage. I decided to text my brother and I asked him what the deal was with the healthcare proxy shit and why he was so worried about it. I also told him he was giving my mom major anxiety and that if he wanted her to live that he should stop asking about this shit and making her think she’s going to die. He didn’t answer me by text. Instead, he called me. I was so angry I didn’t even want to talk to him but my husband encouraged me to answer the phone. I don’t even remember what my brother said to me. All I remember is me flying off the handle and dropping several f-bombs. That was the exact reason I text him. I know myself all too well. When I’m angry like that and I talk to someone I get more angry as I’m hearing their responses and then I fly off the handle. I’m learning to control that part of me. I hung up on him and when he tried calling back I text him and told him I didn’t want to talk. I also told him that his wife was completely out of line calling the social worker about the healthcare proxy, a few days prior too. I told him it wasn’t a good idea to bring her up to the hospital that night if he came .
I went back upstairs to my moms room and again, I acted as if nothing had happened. The last thing I needed to do was cause another panic episode. I wasn’t going to do that to her. I ordered her dinner and just sat down and watched TV with her. Around 8:00pm my brother came walking in. I said hi to him as if we didn’t have that fight a few hours prior. He sat down and it was a little awkward and quiet. Suddenly, out of nowhere, my mom decides to ask him once again why he’s so worried about the healthcare proxy shit. As soon as she said it he got all defensive and he was raising his voice. My mom told him to calm down, but he just kept going. He claims he thought the healthcare proxy meant that only I could speak to the doctors. That was TOTAL bullshit and he knew it. He and Satan were already speaking to them. He was playing dumb. My brother is a very intelligent person. He was always in honors classes and got good grades with half the effort that it took normal people. His whole life when he needed to know something he’d research the shit out of it. Years ago, he wanted to become worlds best whiffle ball player and so went to Google to find out how to throw curve balls and stuff. He built himself a strike zone out of some pvc pipe and sheet metal. He found out that if you rough up the underside of the whiffle ball, it will make it more aerodynamic and so he sat there one day and carved a hatch pattern into about 20 whiffle balls so he could practice throwing them. Now we are supposed to believe that he didn’t google the role of a healthcare proxy? That he really didn’t know what it was? That was total BS.
I stood there quietly, in shock for a moment as he and my mom got loud with one another and and argued back forth. I couldn’t believe this asshole thought it was an appropriate time to do this but in all reality, my mom was the one who brought it up. She was trying to explain that his name was on the healthcare proxy form, but it that since I was home all day and more available, I was the primary and he was the secondary. Finally I decided I had to say something to end things and I calmly told him, “if you wanted to know about it, all you had to do was call me and I would’ve showed it to you.”. That’s when he turned around and looked right up and me and said, “I don’t have to fucking ask you for anything.”. Again was shocked for a second and then I turned to him and said, “that’s psychotic!” and I walked out of the room. I didn’t want things to escalate any further and so I removed my self from the situation.
I got all the way down by the elevator and could still hear him carrying on in there like a fucking asshole. I went downstairs and called my husband to tell him what happened. As I’m talking to him I see Satan come flying over a speed bump and she pulls in front of the building. A few minutes later my brother came walking out. He got into her car and she sped away. She dropped him off like a mom would drop off a little kindergartener. I couldn’t believe it.
I went back upstairs and by that time my mom was all calmed down and she was drifting off to sleep. We didn’t even discuss what had happened with my brother. I helped her get ready for bed and went home. I didn’t understand at the time but eventually I figured out why my brother was so worried about the healthcare proxy. (I will discuss that in a later post). I was really dreading going to bed and waking up the next day because every night I’d go to bed thinking that it couldn’t possibly get any worse than it was the previous day and sure enough the next day would come……and things would get worse.
(Continued in my next post)