My mom ended up spending almost an entire month in the hospital. I brought her in on Aug 1st and she was discharged Aug. 28th. It was one of the longest months of my life. I picked her up from the hospital sometime in the afternoon. I knew from this point on I was going to have to be vigilant about helping her with her day to day tasks.
This hospital stay brought with it a lot of bad news. One being that her cancer had spread to her stomach. The other being that her kidney function, of her transplanted kidney was not doing so good and that she would inevitably end up on dialysis in the near future. In fact before she left the hospital the doctors decided it would be best to do a fistula in her arm. A fistula is when they connect a large vein to an artery so a patient can receive dialysis through it. If you’re not familiar with dialysis, it’s a life saving “treatment” for people with chronic kidney failure. Basically you are connected to a machine by two (very large) needles. Your blood exits your body through one needle and gets cycled through a machine (dialysis machine) where it’s filtered, sometimes nutrients are added and then it’s cycled back into your body by the other needle. While it’s a life saving treatment, it’s not a permanent solution. Your quality of life suffers as you must be tethered to this machine for four hours at a time, usually 3 times a week. When my mom did it back in the early 90’s when her kidneys originally failed, she also worked a full time job. It takes a lot out of you. You also must follow a very strict diet. It’s not fun and my mom was dreading it.
I picked my mom up in the late afternoon that day. Before we went home, she asked if I could stop at the pharmacy to pick up the laundry list of medications she was prescribed. We drove to Kmart where also used to work. I asked if she wanted to wait in the car with my son but she told me no. She wanted to come in and see some of her old co-workers. Oddly enough she kept complaining about this pain in her butt that also went into her leg. I asked her if she had mentioned it to the nurses or doctors before she was discharged and she told me that they said it could be from being in the hospital bed for so long and that it should subside shortly.
She was leaning on the shopping cart all the way through the store and she kept asking me to stop every so often so she could sit down and rest. Something wasn’t right. It took us over an hour and a half to do a complete circle around the store and it was worrying me. Everyday when I came up to the hospital, I encouraged her to do a few laps around the hallways with me and I didn’t recall her complaining about the pain although thinking back, I do recall her complaining a little about numbness in her butt cheek. We got her prescriptions and headed back to her house where I cleaned out her fridge which still had food in it from before she went into the hospital. She made me a list and I ran to the grocery store to grab some stuff so she’d have things to eat. I also grabbed her a slice of pizza and helped her get settled in for the night. I was really worried now about her being alone.
Over the next two weeks the pain started to get worse. She did a search and diagnosed herself through doctor google with a bad case of sciatica. It was time to see the oncologist to talk about a treatment for her cancer. She had already seen one oncologist and went for her followup scans and this time we were seeing a different one who was affiliated with the hospital she had just stayed at which was much closer to where we lived. In fact it’s only 4 miles from my house.
I was the one taking her to all her follow up visits but my brother asked to tag along to see the oncologist. It was the first doctor visit he had attended since he brought her for the second opinion back in the late winter. Since his job was right across the street from the hospital, I drove her there and he met up with us later on. We got into the office and the doctor started explaining how he wanted to try a medication that was fairly new to the market that was made to target her specific type of cancer. My brother started asking a lot of questions. Most of them were good but most them were questions that had he been an active participant in her healthcare, he would’ve already knew the answers to. My mom mentioned the pain in her butt and leg and the doctor prescribed her a fentanyl patch to take along with pain killers she already was on.
We were wrapping up the appointment and waiting on the nurse to bring in a kit that gave us information about the chemotherapy drugs my mom was going to be taking when the doctor asked if we had anymore questions. My brother who was on his phone for most of the visit blurts out, “so, like how long does she have to live?”. Immediately my mom and I swung our heads around and looked at one another with these shocked looks. I couldn’t believe my brother would ask such a blunt question. I watched my mom’s eyes rapidly fill up with water and before the doctor could answer I screamed out, “Why would you even ask such a thing!?”. There was an awkward silence as in the room as I watched tears roll down my mom’s face. I turned to the doctor and told him, “She clearly doesn’t want to know that…” and I asked him to please not answer the question. My brother tried to back peddle by saying, “well, what’s the prognosis?”. I looked back over at my mom who was still shaking her head in disbelief and trying to choke back her tears. The doctor cut in with a very professional answer. He explained to my brother that he doesn’t like to give his patients expirations dates. That each person’s body is different and that it was all dependent on various factors. I was relieved to hear the doctors explanation but I was so angry with my brother. How could he ask that kind of question right in front of her?
There was an obvious tension throughout the rest of the doctors visit. My brother kept his mouth shut and his eyes glued to his phone until the nurse came back in with some literature on the medication. My brother asked my mom if he could see it and he scanned it into this document scanner app that he had on his phone. When my mom asked what he was doing he explained to her that he was keeping track of all of her medical documents in his phone. My mom again shot me a puzzled look probably wondering like I was, how he had access to any of her medical documents prior to this visit. I didn’t want to say, but he probably found them while he and his wife were snooping through my mom’s mail and personal paperwork at her house.
A week or so later we learned that my mom’s insurance had rejected coverage of the medication that she was supposed to get and so the doctor decided to try a different medication. Now it would be another few weeks before my mom received the next medication. In the meanwhile her pain was getting worse. She had started the 12mg fentanyl patch and it didn’t seem to be giving her any relief. I asked a friend of mine who was a nurse and she told me that she needed to give it a few days to work through her system. A few days passed and the patch still wasn’t helping and so I put in a call to the oncologists office and was told by the nurse that my mom had to take the pain pills in conjunction with the patch, which she wasn’t doing. Once she started doing that she got some relief.
It was now mid September. My mom and all her sisters and brothers had planned a big party for my grandmother who was turning 90. Aunt Bea of course was the one in charge. Earlier in the summer she had sent out “save the date” invites on Facebook. I received that one but I wasn’t on the list for the actual invite, for some reason. She sent it to my husband, but not me. I really didn’t want to go. By this point in time I had not spoken to Aunt Bea, Aunt Debbie, their daughters or anyone else really in my family. I felt really uncomfortable about going but seeing that it was such a monumental birthday, I had to suck it up.
At this point in time, my mom was getting fed up with her family. My son had started nursery school and I had posted pics of his first day of school, ever, on my Facebook page and not one person from my family (except my mom’s youngest sister) commented or hit the like button. My mom was really hurt by it and so she left a comment saying “I guess no one in my family cares that my grandson started school today.”.
She asked me if I would be attending my grandmother’s party and I told that I was but I was doing so reluctantly. She told me she didn’t really want to go either but that we had to. I explained to her that I never even got a real invite. As upset with her sisters my mom would become, at times, she never believed that they’d purposely leave me out. I when to show her the invite requests that I had on my phone and I how I only had the one for the original save the date and not the actual party.
Later that night I got home and suddenly I get this nasty text from my mom saying that she was so ashamed of me and couldn’t believe I wasn’t going to my grandmother’s party! A few minutes I get another nasty text from her youngest sister, my aunt Dana, telling me that she couldn’t believe I wasn’t going to my grandmother’s party and how she told her kids that she would disown them if they didn’t come and all this crazy shit! I had no clue why either of them were saying this and so I finally asked my aunt who informed me that she got a notification on Facebook saying I wasn’t attending the party! Sure enough I figured out that as I was searching my invites, I had accidentally hit the, “not attending” button on the save the date. I told them both to cool their tits and that it was a mistake. I also made a public post to let everyone know it was a mistake, so I could calm down all the gossip that I knew would take place but no one even responded.
My place as the family “black sheep” had been solidified. I realized in the preceding years that my family was somewhat like a mini-Mafia and Aunt Bea was the boss and Aunt Debbie was the underboss and of you went against them or tried to break up their delusions of a perfect family, you were bound to be come rejected, outcasted and shunned by all. That’s exactly how I felt…..
(To be continued in my next post)