We had finally gotten the pool closed and we were now in October. My mom’s pain went from bad, to worse, to completely unbearable. I had been urging her for weeks to call a neurologist or to have her primary care physician refer her to a specialist but she kept insisting it was just sciatica and there was nothing more they could do.
I would frequently text my mom at night when I knew she’d be sleeping, figuring she’d get it the next day. I’m a total night owl but at this point in time I think my anxiety was what was keeping me up. I spent many nights on the web trying to research all the different symptoms she was having. I read so many medical articles and I got so good at medical terminology that one of her doctors actually told me he was impressed by my medical knowledge and understanding. I remember reading about sciatica and seeing that if it wasn’t treated, it would only get worse with time. Although that seemed to fit with what was going on, her symptoms didn’t match up with sciatica. I forget now what it said, but hypothetically speaking, it would say that with sciatica the pain gets worse when sitting up and is better when lying down and my mom was experiencing the opposite and so I wasn’t convinced sciatica was the source of her pain.
I went to text her a link to the article around 2:30am one night and surprisingly, she actually answered me back. I asked her what she was doing up and she told me that she was in really bad pain. Over the next two weeks she started texting me in the middle of the night telling me she was up because she was in such bad pain she couldn’t sleep. I remembered from when she had her surgery and even from surgeries that I had in the past, that you need to stay on top of your pain and so I told her that she should take her next pain killer an hour to half hour before the time span is up. So if it says take every 4 hours, you take the next pill on the 3rd hour so that you avoid breakthrough pain. The fentanyl patch was supposed to help with that too. I have to admit, I was worried and I remember going to her house one day and on her bathroom counter, seeing this hand written note of all different times. As I read it closely I realized that she was taking the next dose an hour later sometimes even sooner. Her handwriting was all shaky and didn’t look normal. I knew if she wasn’t sleeping well she had to be in pretty severe pain because my mom was a very heavy sleeper and never had issues sleeping prior to this. The article I sent her finally convinced her that she wasn’t going to magically get better on her own, and so finally she called her primary care physician who referred her to a spine doctor/ pain management doctor.
In the mean time, she had doctors appointments almost every day for the first two weeks of October. I was at her house everyday bringing her here and there, dragging my three year old son back and forth to doctors offices and to run errands like picking up prescriptions. We saw her kidney doctor, her lung doctor and finally the spine doctor on Friday, the 14th of October. The spine doctor wanted her to go for an MRI and so the soonest she could go was the following Monday. I hoped that weekend would be the last she suffered in pain and that her pain didn’t get even worse.
I remember picking her up that Monday and she was a wreck. Her pain had skyrocketed so badly over that weekend that she was hardly able to dress herself. I had to help her get her shoes on, gather up her belongings and lock up her dogs and her house. She was having a really hard time walking too. She was using the cane I got her but it wasn’t even helping. She would take a few steps then stop and she’d be moaning and groaning in pain. I could see the anguish on her face with each step she took. She was in terrible pain. It was really hard to watch her like that. I had to help her to the car and help her get in the car. She was screaming with each movement she made. The most simple of tasks were torture to her. Even the bumps in the car were causing her pain to intensify. By this time she hadn’t slept at all in two full days. Prior to then she wasn’t really sleeping good but that weekend she said she didn’t sleep at all. She couldn’t even lay down. The pain was excruciating. About a year prior she had purchased a new bed and it just so happened that she went all out and got one of those adjustable beds, like those old commercials for the craftmatic adjustable beds in the 80’s and 90’s, only this one was much nicer. She got a foam mattress like the Tempurpedic ones to go on top. The bed even had LED lights on it so that if you woke up in the middle of the night, you didn’t have to shuffle around in the dark looking for your slippers. Anyway, she told me that no matter how she adjusted the bed, she just couldn’t get comfortable. The only way she was ok was sitting in an upright position and so she spent those two nights sitting up and not sleeping.
My mom was very stubborn. I don’t know if this was something that came with age or what but she was so stubborn that it was detrimental to her health. She was also in denial. Denial was my mom’s way of “dealing” with things. She did it my whole life. She was in denial that my dad had a drinking problem, that their relationship wasn’t the best, that he wasn’t the greatest father. She denied that my brother was a selfish prick, that he wasn’t always the most caring person and that he was completely brainwashed by his wife. I don’t have many bad things to say about my mom but her denial was the one thing about her that really frustrated me at times. I realize now though that she does that because that’s how she was raised. My grandmother did the exact same thing. My mom married an almost exact replica of her father. My grandmother was a denier and enabler and I have come to realize that my mom came from an entire family of deniers and enablers.
Her denial of her sickness didn’t do her any favors and at times is was aggravating to deal with, because all I wanted to do was help her and she would just make up all these excuses and bizarre explanations to shut me up so she didn’t have to deal with reality. For instance, looking back she was showing symptoms of kidney failure for almost an entire year. When I had brought her to the hospital for the first time back in December 2015, I found out she had high blood pressure and it had been high for a month but she had an excuse for that. It was because of her weight. No, high BP is a sign of kidney failure and a cause of it. I also found out her creatinine level (creatinine is how they measure kidney function in the blood) was slowly rising, another sign of kidney failure. She kept complaining of nausea and actually told me she had thrown up one night after having dinner with a friend bit of course there was an excuse. . She told me it was the first time she had vomited since her kidneys failed in the early 90’s but it was only an isolated incident and she blamed the food and the fact that she ate too much. I came to find out later it had happened more than a few times. Nausea and vomiting is yet another sign of kidney failure. She worked a part time job at Kmart where she was formally a filltime employee for over 20 years. She kept telling me that her ankles would be swollen at the end of the night, but she blamed the fact that she was on her feet while working. I would tell her that’s not normal but she had an excuse and/or explanation for everything, always and so the excruciating pain in her back, butt and leg, was no different. She always denied things until they got to a point that they were completely unmanageable and it was the most frustrating thing on earth.
I was trying to urge her to go to the ER for her self diagnosed “sciatica” for the first two weeks of October. I tried to sell her on the fact that the ER is like a one stop shop and you get better results and faster treatment. Instead of dragging it out over a week and having to make an appointment for the doctor and then a few days later go get the MRI, and then wait a few more days for the results and a follow up appointment, she could bang it all out in one day and start getting relief. No..no, though, she rather suffer and cut off her nose to spite her face. Her quality of life suffered the most because she was in such bad denial.
I want to point out here that while my mom always used denial as a coping mechanism it is extremely common and in fact almost inevitable, for any patient who’s dealing with a very serious illness like cancer to be in some level of denial. I am not coming down on her for that. I am just explaining how as a “caretaker” how frustrating it was. I wanted so badly to help her have the best quality of life and it was like she couldn’t get out of her own way. I had to force her to face things sometimes because I knew she wasn’t thinking clearly and therefore wasn’t capable of making the best decisions for herself.
We got to the MRI place and I could see she was in really bad pain. She was also pretty agitated from not sleeping for two days straight. She had no patience with my son and she wasn’t really interacting with him like she normally did. I understood why though. She always treated him so good, she adored him and so that was another indicator of how bad of shape she was in. I had to pull up to the front doors and let her out and help her get into the lobby. Then I had to park and get my son out of the car and meet her inside. I filled out her paperwork that day because I could see she wasn’t even able to concentrate on it. She didn’t even know if she was going to be able to lay down and still enough for the MRI but somehow she did it.
I helped her get through the office and to the front door where I told her to sit and wait while I went and get the car. I pulled up and got out to help her get in the car and as soon as we got her in the car her phone rang. It was the spinal doctor we saw the previous Friday. I could tell by her responses to him something wasn’t good. She hung up the phone and turned to me…. “well he was able to get his hands on some of my old scans…..he sees a spot on my sacrum (the bone that houses your tailbone and connects it to the pelvis), he doesn’t want to say but he’s pretty sure it’s the cancer.”. There was a deafening silence for what seemed like a minute or two, but was probably more like seconds. I was speechless. I was in shock but not surprised at the same time. When my mom started complaining about the pain in her leg, butt and tailbone, I thought back to before she had her surgery. She was doing all her pre-op tests and they sent her for a bone scan to make sure the cancer hadn’t spread there yet. Had they seen it did, they may have changed the whole course of her treatment and possibly either delayed or completely nixed the surgery. Her bones came back clean except for this one very small spot that they saw on her tailbone. They told her they were pretty sure that it was just arthritis but they wanted to check it again one more time before the surgery. She ended up in the hospital and her surgery got delayed because of it. She was supposed to follow up but she never did. Again; she just took the doctors word at face value and convinced herself it was arthritis….more denial. After she had the surgery, every time she would complain about pains anywhere in her back or legs, I’d remind her that she never followed up on that and maybe that’s what was causing her pain. Sure enough that’s what the spine doctor saw.
My mom looked devastated and all she said, “it figures.”. I felt like all she did for the past almost year, was hear one shitty piece of bad news after another. I was trying so hard to remain optimistic but deep down inside I knew what the doctor said was true. I brought up the fact that the other doctors said it was arthritis. I just kept rambling on trying to bring up her spirits. She was quiet for most of the ride home. A rarity for my mom who when I was a kid, practically had a phone shaped Siamese twin growing out of her head. For the last ten years since my dad passed I felt like all I wanted to do was just fix her. I felt like I was constantly talking her off the ledge but things had reached a point where I didn’t even know what to say anymore. I wished I could take away all her pain and sadness. I felt so helpless.
The doctor also advised her to go to the emergency room. He told her that if her pain was so bad that she hadn’t slept for 2 to 3 days straight, the ER was the best place for her. We got back to her house and she told me that she wanted to clock back into work and finish her day. I admit I was a bit annoyed because she was always more worried about work than herself but I just let her do it. I knew work was her escape. I knew it was going to be a long night for us and so I sat there and waited. Then helped her pack her bags. She was still in really bad pain. I carried her bags out to the car and advised her to take another pain killer before we left because from past experiences, I knew we were in for a very long night…..
(To be continued in my next post)