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My mother has been having some growing health concerns since back around April.
It's heartbreaking, because my whole family went through a pretty rough spell of sickness back in February and March. Hard to know if it was Covid or not, but it might have been. Then, as soon as she started to get better, she was outside pulling weeds just to have something to do. She likes gardening, and she wanted fresh air. She was hanging out with my dad. Then, she fell and landed on her butt on a small statue.
She said that it didn't hurt at the time, at least not very much, but then she was sore for weeks.
My mother has spina bifida, and this includes some nerve damage/malformation, so the fact that it didn't hurt badly when she fell might in part be due to that.
Anyway, after that she started having some pain in her whole, general groin area. For a while, she was convinced she had a bladder infection, which has been common for her most of her life for various reasons related to the spina bifida. However, when they cultured her urine, they told her there was not enough bacteria to warrant another round of antibiotics. However, she was still in pain and her urine smelled unusually strong. She has an issue with this sometimes because with the amount of medications she has to take on a regular basis, there's a lot of slough off in her urine, but it is not usually extremely noticeable.
I know that this is personal information pertaining to my mother, but since you don't know her and I am just trying to write down what I know about the situation, I hope that you will be able to bear it with respect and some degree of objectivity.
When her pain didn't clear up after a couple of weeks, they did a CT scan or something. They noted that there was some "thickening" of her bladder wall, but they did not indicate that it seemed to be a tumor. They did not act as though it was especially urgent, but they did begin to look for a urologist who could see her with her insurance. My mom is on a medicaid expansion of medicare, related both to income and being on full, permanent disability. This meant that they had to send her to a larger city in order to see a urologist.
Since my mom kept thinking she was getting better and/or that her discomfort was acute, she did postpone her urology appointment once. I don't remember for how long.
Eventually, about two weeks ago, she went down to the urologist. The first appointment was just a consult, and it upset both my mother and father. The doctor was very cool and aloof, and it just kind of seemed like they weren't taking anything seriously. They made her come back a week later (about a four hour round trip, which is difficult when my mother is having problems with the part of her body she sits upon) to get a cystoscopy. That appointment went a bit better, and she said that the assistant was very kind and did most of the procedure except for the actual insertion and looking around. She felt better about that one at least.
However, it didn't go as well as it could have. She was told that there was definitely something wrong, though the doctor could not identify exactly what just based on what he saw with the camera. He told her that he needed to take a scraping of it but that it would be too painful to do with her while she was not sedated or anesthetized. They called her toe schedule to do that later this month.
The doctor kept asking her if she had ever had a mesh implanted. (Sometimes there are meshes that they implant into people's bodies, particularly cis women afaik, to support the bladder or uterus if they are dropping in a way that is bad.) She has never had that particular procedure done.
When I was in kindergarten, she did have spine surgery to try and correct some of the issues with her spina bifida. They were not able to do as much as they had hoped, but they did flatten the area on her back that is visibly affected on the outside near the base of her spine. However, shortly after she came home from that surgery, my dad and she discovered that the area that had been stitched up was leaking fluid, so they had to do another urgent surgery to put a shunt into her body to stop that from happening. We know that a piece of the shunt was intentionally left in her body. But I doubt that was what the doctor was seeing as it has nothing to do with her bladder.
I think he thought that it looked as though her bladder had been injured. And again, we wonder if this could go back to the fall in April. But it seems impossible that an injury sustained then would be getting worse instead of better.
Today was a really hard day for my mom. She felt amazingly better on Friday, and she needed to go buy some things before she undergoes the biopsy procedure, so we masked up and went to Walmart. She felt almost normal that day, given what normal is for her. But then last night she started noticing blood and blood clots in her urine. She is like twenty years past menopause now, and she said she knows it is coming from her bladder. She'd had a spot or two of blood before, but apparently her urine was bloody for about twelve hours today, finally clearing up a bit before she went to bed.
She felt as though the doctor was trying to brace her to be told that she has cancer, even though no one has actually said that yet. It would seem to me that if they think it is a high possibility, they would actually articulate the concern and be a bit more on top of things, but then I feel mistrustful because she is not a High Profit Patient.
My mom is in her 60s and suffers from a lifelong disability. I feel so strange and anxious about it, because there have been times in my life when I didn't feel as close to my mom as I wished I were. I just have an easier personality chemistry with my dad, and I don't know why. But during this season of being unemployed at home due to the pandemic, I am at least grateful that I have had the opportunity to have easier conversations with her and a more affectionate relationship. I feel just... awkward with my mom, sometimes, and I don't know why.
She talked about how she has prayed that God would not allow her to linger in ancient age while bedridden or something. But she doesn't want to die now. At the same time, she has said that unless they believe there is a pretty sure-fire, high probability chance that they can get rid of a cancer, she says that she is not sure she is prepared to undergo a long battle with it and that she would prefer palliative care and hospice if it meant she could die at home. Especially right now, she doesn't want to go into a hospital where we can't even be with her and die alone. And I can't blame her for that.
It's just putting me in a really weird position, because I don't want to assume that she's dying, and I don't think she wants me to either. But I do know that she is ill in a way that she has not already been. And I think about the general paralysis on "my life" moving forward at all right now. In a way, I am grateful, if she is coming much closer to the end of her life than I would like, to get to be around her. But I certainly don't know how to reach out in as meaningful a way as it feels like I should if that's the case.
I think about how that if she dies in the next year or something that she will never know who or if I marry, if I have kids, and so on. And she has Charlie, our little dog who thinks she is the Queen of the Earth. I'm scared, but I don't want to borrow trouble and fear from the future, and sometimes it's like I feel like I'm in plastic wrap away from my emotions about it. I don't want to dwell on it all the time. I don't want her to watch me cry and grieve while she isn't deathly sick. But I don't want to be callous, either.
She and I talked about it some earlier, but I just felt like I needed to put it down somewhere that wasn't just reiterating her own fears back at her.
I told her that she definitely needs to call and tell her primary care doctor tomorrow about the blood.
Her cousin whom she was close to growing up is coming to visit her tomorrow. He's getting old and having health problems and is in town. I'm really happy for her. But I really hope that this isn't some end of life concession, in terms of how God and circumstance have seen fit to give her something to look forward to for once.
It's heartbreaking, because my whole family went through a pretty rough spell of sickness back in February and March. Hard to know if it was Covid or not, but it might have been. Then, as soon as she started to get better, she was outside pulling weeds just to have something to do. She likes gardening, and she wanted fresh air. She was hanging out with my dad. Then, she fell and landed on her butt on a small statue.
She said that it didn't hurt at the time, at least not very much, but then she was sore for weeks.
My mother has spina bifida, and this includes some nerve damage/malformation, so the fact that it didn't hurt badly when she fell might in part be due to that.
Anyway, after that she started having some pain in her whole, general groin area. For a while, she was convinced she had a bladder infection, which has been common for her most of her life for various reasons related to the spina bifida. However, when they cultured her urine, they told her there was not enough bacteria to warrant another round of antibiotics. However, she was still in pain and her urine smelled unusually strong. She has an issue with this sometimes because with the amount of medications she has to take on a regular basis, there's a lot of slough off in her urine, but it is not usually extremely noticeable.
I know that this is personal information pertaining to my mother, but since you don't know her and I am just trying to write down what I know about the situation, I hope that you will be able to bear it with respect and some degree of objectivity.
When her pain didn't clear up after a couple of weeks, they did a CT scan or something. They noted that there was some "thickening" of her bladder wall, but they did not indicate that it seemed to be a tumor. They did not act as though it was especially urgent, but they did begin to look for a urologist who could see her with her insurance. My mom is on a medicaid expansion of medicare, related both to income and being on full, permanent disability. This meant that they had to send her to a larger city in order to see a urologist.
Since my mom kept thinking she was getting better and/or that her discomfort was acute, she did postpone her urology appointment once. I don't remember for how long.
Eventually, about two weeks ago, she went down to the urologist. The first appointment was just a consult, and it upset both my mother and father. The doctor was very cool and aloof, and it just kind of seemed like they weren't taking anything seriously. They made her come back a week later (about a four hour round trip, which is difficult when my mother is having problems with the part of her body she sits upon) to get a cystoscopy. That appointment went a bit better, and she said that the assistant was very kind and did most of the procedure except for the actual insertion and looking around. She felt better about that one at least.
However, it didn't go as well as it could have. She was told that there was definitely something wrong, though the doctor could not identify exactly what just based on what he saw with the camera. He told her that he needed to take a scraping of it but that it would be too painful to do with her while she was not sedated or anesthetized. They called her toe schedule to do that later this month.
The doctor kept asking her if she had ever had a mesh implanted. (Sometimes there are meshes that they implant into people's bodies, particularly cis women afaik, to support the bladder or uterus if they are dropping in a way that is bad.) She has never had that particular procedure done.
When I was in kindergarten, she did have spine surgery to try and correct some of the issues with her spina bifida. They were not able to do as much as they had hoped, but they did flatten the area on her back that is visibly affected on the outside near the base of her spine. However, shortly after she came home from that surgery, my dad and she discovered that the area that had been stitched up was leaking fluid, so they had to do another urgent surgery to put a shunt into her body to stop that from happening. We know that a piece of the shunt was intentionally left in her body. But I doubt that was what the doctor was seeing as it has nothing to do with her bladder.
I think he thought that it looked as though her bladder had been injured. And again, we wonder if this could go back to the fall in April. But it seems impossible that an injury sustained then would be getting worse instead of better.
Today was a really hard day for my mom. She felt amazingly better on Friday, and she needed to go buy some things before she undergoes the biopsy procedure, so we masked up and went to Walmart. She felt almost normal that day, given what normal is for her. But then last night she started noticing blood and blood clots in her urine. She is like twenty years past menopause now, and she said she knows it is coming from her bladder. She'd had a spot or two of blood before, but apparently her urine was bloody for about twelve hours today, finally clearing up a bit before she went to bed.
She felt as though the doctor was trying to brace her to be told that she has cancer, even though no one has actually said that yet. It would seem to me that if they think it is a high possibility, they would actually articulate the concern and be a bit more on top of things, but then I feel mistrustful because she is not a High Profit Patient.
My mom is in her 60s and suffers from a lifelong disability. I feel so strange and anxious about it, because there have been times in my life when I didn't feel as close to my mom as I wished I were. I just have an easier personality chemistry with my dad, and I don't know why. But during this season of being unemployed at home due to the pandemic, I am at least grateful that I have had the opportunity to have easier conversations with her and a more affectionate relationship. I feel just... awkward with my mom, sometimes, and I don't know why.
She talked about how she has prayed that God would not allow her to linger in ancient age while bedridden or something. But she doesn't want to die now. At the same time, she has said that unless they believe there is a pretty sure-fire, high probability chance that they can get rid of a cancer, she says that she is not sure she is prepared to undergo a long battle with it and that she would prefer palliative care and hospice if it meant she could die at home. Especially right now, she doesn't want to go into a hospital where we can't even be with her and die alone. And I can't blame her for that.
It's just putting me in a really weird position, because I don't want to assume that she's dying, and I don't think she wants me to either. But I do know that she is ill in a way that she has not already been. And I think about the general paralysis on "my life" moving forward at all right now. In a way, I am grateful, if she is coming much closer to the end of her life than I would like, to get to be around her. But I certainly don't know how to reach out in as meaningful a way as it feels like I should if that's the case.
I think about how that if she dies in the next year or something that she will never know who or if I marry, if I have kids, and so on. And she has Charlie, our little dog who thinks she is the Queen of the Earth. I'm scared, but I don't want to borrow trouble and fear from the future, and sometimes it's like I feel like I'm in plastic wrap away from my emotions about it. I don't want to dwell on it all the time. I don't want her to watch me cry and grieve while she isn't deathly sick. But I don't want to be callous, either.
She and I talked about it some earlier, but I just felt like I needed to put it down somewhere that wasn't just reiterating her own fears back at her.
I told her that she definitely needs to call and tell her primary care doctor tomorrow about the blood.
Her cousin whom she was close to growing up is coming to visit her tomorrow. He's getting old and having health problems and is in town. I'm really happy for her. But I really hope that this isn't some end of life concession, in terms of how God and circumstance have seen fit to give her something to look forward to for once.
no subject
Date: 2020-08-10 11:21 pm (UTC)From:no subject
Date: 2020-09-20 06:43 am (UTC)From:no subject
Date: 2020-08-11 08:55 am (UTC)From:(The blood could easily be a complication of the investigation itself, and not cancer? I will cross my fingers that's the case, and that it's easily resolved.)
no subject
Date: 2020-09-20 06:43 am (UTC)From:no subject
Date: 2020-08-11 03:51 pm (UTC)From:no subject
Date: 2020-09-20 06:43 am (UTC)From:no subject
Date: 2020-08-11 09:42 pm (UTC)From:no subject
Date: 2020-09-20 06:43 am (UTC)From:no subject
Date: 2020-08-13 01:06 am (UTC)From:no subject
Date: 2020-09-20 06:43 am (UTC)From: