This is my thread
- Thread starter S O F I
- Start date
So, an update from my past few months, since May, really.
My mom was diagnosed with colon cancer early-May. A few other scans confirmed metastasis to the liver, making it stage 4. Incurable but possibly treatable. We had hope. It was a late find but maybe we could get a few, good years with her with treatment from the best cancer treatment centers near us.
Two weeks later, Mother's Day, my mom had a small stroke. Transient and lasted just a few seconds. We still took her to the hospital and she had no lingering effects. We continued to set her up for chemo with a close family friend oncologist. She had a port placed in her chest and was ready to go for chemo.
First week of June, the day she was going in for chemo, she had a stroke in the shower. A proper stroke that gave her left sided weakness and had her speechless for a few days. She was taken to a big university hospital and she began to recover and actually got her first cycle of chemo a week later. My eldest aunt flew in and we took daily trips from home to the city for three-plus weeks where my sister or I would spend the night with mom and my aunt and sister and I would at least spend the day with her bringing her home-cooked meals.
She was improving slowly and started gaining function of her left arm and leg. She also contracted C diff. When it was time for discharge, no proper rehab facility would take her for stroke rehab. She instead got sent to a nursing home for 2 more weeks for some shitty rehab while basically being confined to her room because C diff is like that. She recovered from the C diff but it was nearly 5 weeks after her first dose of chemo and we wanted to continue that over rehabing her stroke. So she went and got her second cycle of chemo.
She was back home for chemo but only for four days. She had another minor thromboembolic episode and was taken back to a local hospital and then sent back to the same university hospital in the city. They did some more workup on her and found two of her heart valves had some vegetations that were probably contributing to her constant strokes. This was her third one in just over two months. They wanted to cut her open and replace them. My dad stepped in and told them not to and instead put her on blood thinners. They weren't able to culture bacteria from the vegetations but they couldn't rule out infective endocarditis either. She was put on one oral antibiotic and then one IV. I would end up giving her the IV antibiotic every night for six weeks and then also injecting her with the blood thinner. My first real task as a wannabe-doctor.
She was good on this regimen but she tested positive for c diff again during this second hospitalization. Discharge meant another shitty nursing home and no proper stroke rehab. She was weaker on the left side this time but the doctor said it should recover faster than before. It didn't. It healed but not faster nor to the same point as after the second stroke. Still, chemo was a bigger issue and it had been 4 weeks since her second round of chemo. We got her out of the nursing home and on to her third round of chemo. This was early-August. Three months after diagnosis and she was averaging one round of chemo a month. It was supposed to be once every two weeks. She got her third dose when she was supposed to be getting her sixth or seventh dose.
Third and fourth dose went as scheduled. She had minimal side effects from the chemo. She was weak and fatigued but the lab work showed tumor marker decreases of half every time. We were happy.
About ten days ago, my mom's appetite had gone away. Small things like fruits and rice would have her throwing up almost immediately. Her belly was distended and she had stomach pain on both sides. She could tolerate liquids but that's not way to get proper nutrition. We tried all sorts of things, assuming the distention was gas or constipation, but nothing worked. Her birthday was this past Wednesday and that's when she was scheduled for another round of chemo. Instead, we drove her to my dad's hospital ER to get her seen. They did a CT scan and the liver tumors from may had doubled in size. It had spread to her adrenals and abdominal lymph nodes and possibly lower lobe of her lung. It had gone deeper in to the tissue of the liver too and was the cause of her side pain. It was compressing the smaller ducts of her liver, areas that were unable to be stented.
The next few days were us trying to clear the obstruction in her bowels. Air on the left side and impacted stool on the right. No amount of enemas worked and she became jaundiced. She was placed in the ICU and nothing could be done until her bowels were emptied. At this point, she started collecting fluid in the pleura of her right lung and her breathing became desperate and labored. She was a mess and wasn't all there mentally. Low sodium, elevated bilirubin from a congested and damaged liver. Bowel blockage. Nothing was working and even draining the pleura became a futile effort since it would fill right back up.
It was all the cancer. We were celebrating the shrinking of the rectal tumor all the while the tumor had done its job long ago and spread to the liver. And then got worse. Past the point of no return.
My aunt was here for three months until two weeks ago; my second aunt came in and took over caring for her at home. But yesterday, my dad made her DNR and we informed people it was the end. My mom was in so much pain (until the morphine) and it was a sad sight to see. My third aunt flew in. The original aunt flew in with my mom's other brother from Canada. All four sisters were together and one of three brothers was here. They took such good care of her and it was a mix of reminiscing of old times and crying about the current situation.
My mom was kept comfortable with constant morphine until she passed today at 5:35 PM. Prior to that, the day was filled with family friends pouring in and out of the ICU saying their goodbyes. It was incredible. Even the nurses commented on how many people were there, flooding out of the room and in to the hallway.
We thought she was going to pass away over night last night but she didn't. She kept fighting. She was breathing on her own the whole time but wasn't too responsive. But we knew she was "there" as we talked to her. Confessed and apologized to her. Praised her for her bravery of enduring all that shit for three months only for it to come to an end much sooner than we expected. She never complained during her treatment and all the roadbumps that came with it. Never said "just let me go" when things got tough. She told my dad long ago she trusted him when it came to deciding her fate if she ever got sick. My dad had to make the call at the end of the day.
She was DNR Saturday afternoon and we thought she'd be gone during the night. Her body fought through the night and in to the next evening when she finally had enough. Even as she lay there after it was over, she looked like royalty. Her hair was perfect despite not being touched by a stylist since April. Her skin was flawless despite being in a hospital for 3.5 out of 4 months. Not a single blemish. And her final expression was of relief. There was nothing to fight for anymore since her liver was so heavy with tumors and inflammation.
Her parting gift was bringing her sibllings together. Siblings that had fought with each other for over a decade and some hadn't spoken since then. They all spoke to each other, comforted each other. No drama. When she was first diagnosed, there were family friends my parents weren't cool with for over a decade that took the first steps to reach out to her. To come visit her. All the tension and drama melted away and there were people that were our neighbors that we hadn't seen in 15+ years that were in our homes, genuinely comforting my parents these past few months. Several texts weekly on how she was doing and bringing food over or just sitting with her.
She rekindled so many lost friendships and relationships after so many years of not talking. The problem is, she had to sacrifice herself in the process. She won't get to see the fruits of her labor, at least not alive on Earth. Maybe she's looking down and admiring her work.
She wanted to live but she also trusted my dad's judgement. My dad, who had DNR so many patients over 40 years of practice and the families that trusted he was making the right choice when there was nothing worth fighting for. If my dad said it was done (and it was done), it was done. Her oncologist visited her in the hospital and explained the scans to me. She laid the stepping stones for me by explaining each finding on the scan until I just blurted out without thinking "this isn't worth it." And the sadness in her eyes as she gave me a faint nod because she couldn't bring herself to say it. It was the right decision. And I hope mom knows that.
My mom was diagnosed with colon cancer early-May. A few other scans confirmed metastasis to the liver, making it stage 4. Incurable but possibly treatable. We had hope. It was a late find but maybe we could get a few, good years with her with treatment from the best cancer treatment centers near us.
Two weeks later, Mother's Day, my mom had a small stroke. Transient and lasted just a few seconds. We still took her to the hospital and she had no lingering effects. We continued to set her up for chemo with a close family friend oncologist. She had a port placed in her chest and was ready to go for chemo.
First week of June, the day she was going in for chemo, she had a stroke in the shower. A proper stroke that gave her left sided weakness and had her speechless for a few days. She was taken to a big university hospital and she began to recover and actually got her first cycle of chemo a week later. My eldest aunt flew in and we took daily trips from home to the city for three-plus weeks where my sister or I would spend the night with mom and my aunt and sister and I would at least spend the day with her bringing her home-cooked meals.
She was improving slowly and started gaining function of her left arm and leg. She also contracted C diff. When it was time for discharge, no proper rehab facility would take her for stroke rehab. She instead got sent to a nursing home for 2 more weeks for some shitty rehab while basically being confined to her room because C diff is like that. She recovered from the C diff but it was nearly 5 weeks after her first dose of chemo and we wanted to continue that over rehabing her stroke. So she went and got her second cycle of chemo.
She was back home for chemo but only for four days. She had another minor thromboembolic episode and was taken back to a local hospital and then sent back to the same university hospital in the city. They did some more workup on her and found two of her heart valves had some vegetations that were probably contributing to her constant strokes. This was her third one in just over two months. They wanted to cut her open and replace them. My dad stepped in and told them not to and instead put her on blood thinners. They weren't able to culture bacteria from the vegetations but they couldn't rule out infective endocarditis either. She was put on one oral antibiotic and then one IV. I would end up giving her the IV antibiotic every night for six weeks and then also injecting her with the blood thinner. My first real task as a wannabe-doctor.
She was good on this regimen but she tested positive for c diff again during this second hospitalization. Discharge meant another shitty nursing home and no proper stroke rehab. She was weaker on the left side this time but the doctor said it should recover faster than before. It didn't. It healed but not faster nor to the same point as after the second stroke. Still, chemo was a bigger issue and it had been 4 weeks since her second round of chemo. We got her out of the nursing home and on to her third round of chemo. This was early-August. Three months after diagnosis and she was averaging one round of chemo a month. It was supposed to be once every two weeks. She got her third dose when she was supposed to be getting her sixth or seventh dose.
Third and fourth dose went as scheduled. She had minimal side effects from the chemo. She was weak and fatigued but the lab work showed tumor marker decreases of half every time. We were happy.
About ten days ago, my mom's appetite had gone away. Small things like fruits and rice would have her throwing up almost immediately. Her belly was distended and she had stomach pain on both sides. She could tolerate liquids but that's not way to get proper nutrition. We tried all sorts of things, assuming the distention was gas or constipation, but nothing worked. Her birthday was this past Wednesday and that's when she was scheduled for another round of chemo. Instead, we drove her to my dad's hospital ER to get her seen. They did a CT scan and the liver tumors from may had doubled in size. It had spread to her adrenals and abdominal lymph nodes and possibly lower lobe of her lung. It had gone deeper in to the tissue of the liver too and was the cause of her side pain. It was compressing the smaller ducts of her liver, areas that were unable to be stented.
The next few days were us trying to clear the obstruction in her bowels. Air on the left side and impacted stool on the right. No amount of enemas worked and she became jaundiced. She was placed in the ICU and nothing could be done until her bowels were emptied. At this point, she started collecting fluid in the pleura of her right lung and her breathing became desperate and labored. She was a mess and wasn't all there mentally. Low sodium, elevated bilirubin from a congested and damaged liver. Bowel blockage. Nothing was working and even draining the pleura became a futile effort since it would fill right back up.
It was all the cancer. We were celebrating the shrinking of the rectal tumor all the while the tumor had done its job long ago and spread to the liver. And then got worse. Past the point of no return.
My aunt was here for three months until two weeks ago; my second aunt came in and took over caring for her at home. But yesterday, my dad made her DNR and we informed people it was the end. My mom was in so much pain (until the morphine) and it was a sad sight to see. My third aunt flew in. The original aunt flew in with my mom's other brother from Canada. All four sisters were together and one of three brothers was here. They took such good care of her and it was a mix of reminiscing of old times and crying about the current situation.
My mom was kept comfortable with constant morphine until she passed today at 5:35 PM. Prior to that, the day was filled with family friends pouring in and out of the ICU saying their goodbyes. It was incredible. Even the nurses commented on how many people were there, flooding out of the room and in to the hallway.
We thought she was going to pass away over night last night but she didn't. She kept fighting. She was breathing on her own the whole time but wasn't too responsive. But we knew she was "there" as we talked to her. Confessed and apologized to her. Praised her for her bravery of enduring all that shit for three months only for it to come to an end much sooner than we expected. She never complained during her treatment and all the roadbumps that came with it. Never said "just let me go" when things got tough. She told my dad long ago she trusted him when it came to deciding her fate if she ever got sick. My dad had to make the call at the end of the day.
She was DNR Saturday afternoon and we thought she'd be gone during the night. Her body fought through the night and in to the next evening when she finally had enough. Even as she lay there after it was over, she looked like royalty. Her hair was perfect despite not being touched by a stylist since April. Her skin was flawless despite being in a hospital for 3.5 out of 4 months. Not a single blemish. And her final expression was of relief. There was nothing to fight for anymore since her liver was so heavy with tumors and inflammation.
Her parting gift was bringing her sibllings together. Siblings that had fought with each other for over a decade and some hadn't spoken since then. They all spoke to each other, comforted each other. No drama. When she was first diagnosed, there were family friends my parents weren't cool with for over a decade that took the first steps to reach out to her. To come visit her. All the tension and drama melted away and there were people that were our neighbors that we hadn't seen in 15+ years that were in our homes, genuinely comforting my parents these past few months. Several texts weekly on how she was doing and bringing food over or just sitting with her.
She rekindled so many lost friendships and relationships after so many years of not talking. The problem is, she had to sacrifice herself in the process. She won't get to see the fruits of her labor, at least not alive on Earth. Maybe she's looking down and admiring her work.
She wanted to live but she also trusted my dad's judgement. My dad, who had DNR so many patients over 40 years of practice and the families that trusted he was making the right choice when there was nothing worth fighting for. If my dad said it was done (and it was done), it was done. Her oncologist visited her in the hospital and explained the scans to me. She laid the stepping stones for me by explaining each finding on the scan until I just blurted out without thinking "this isn't worth it." And the sadness in her eyes as she gave me a faint nod because she couldn't bring herself to say it. It was the right decision. And I hope mom knows that.
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My dad has a new life to learn how to live. I'm OK, I'll miss her. I cried a lot in front of her over the four months but she told me "everything will be OK, don't worry." I cried a lot the last two days too. The one who kept her head down and teared up in private was my sister. Together, she and I handled shit with driving to the hospital daily and driving mom to her chemo sessions. We took care of her at home too handled food with our aunt. and the difficult things like having to assist her in bathing and going to the bathroom. My sister just kept going, staying hopeful, and doing research on clinical trails in case things didn't work out. It all came to an end for today when she realized she had 4 months of emotional release to catch up on. She realized the vacuum in her life that was about to exist. 4 months of grief pent up and then the grief of actually losing her mother. The mother that was supposed to dress her up for her wedding. To be a grandmother to our children. Gone. No one to call when things were tough. Or just someone to talk to. No one to go shopping for makeup or clothes or trips to the salon. My sister lost more than any of us today. A 25 year old woman, who got accepted to medical school but deferred enrollment for a year to take care of mom and thinking in a year things would be different and she could resume school was just robbed of an idol, a mentor, a mother. One month after she was originally set to begin medical school.
She has a year to grieve, as do I. I still haven't earned a medical degree. I want to quit and just work retail. Live a regular life. I told my mom I was sorry for fucking up and taking so long and that she wouldn't see me graduate. But then I accidentally promised I'd finish it up and be the best doctor I could be. Can't renege on that one now. Oops.
This cancer was fast-moving one, despite colon cancers being kind of slow-growing. It wanted her and wanted her bad. And it got her. She had symptoms for about a year prior to May but didn't mention them. Not to her physician husband. Not to her kids. Until it got real bad. And even then she confided in her sisters for a few months before asking my dad for help. Maybe if she spoke up earlier, it would've been a bit better? Or, as the oncologist told us, it was a mutated variant that wasn't going to respond to immunotherapy and chemo was the only hope.
I don't know. I'm not going to review the tapes like a coach for a sports team. It happened. She was at peace at time of diagnosis and at the time of her passing. If she had to go, it could have been a lot more chaotic and heartbreaking. It could have always been worse.
It hasn't even been seven hours since her passing. I don't know if it has hit me yet. I prepped for this, mentally, since her diagnosis. Maybe the silver lining was the Universe gave us all a 4 month trial period of life without her at home and plenty of instances to cry and wonder about the future. I don't think I have the future figured out without a mom but it doesn't feel as daunting as I would have thought it to be six months ago.
She has a year to grieve, as do I. I still haven't earned a medical degree. I want to quit and just work retail. Live a regular life. I told my mom I was sorry for fucking up and taking so long and that she wouldn't see me graduate. But then I accidentally promised I'd finish it up and be the best doctor I could be. Can't renege on that one now. Oops.
This cancer was fast-moving one, despite colon cancers being kind of slow-growing. It wanted her and wanted her bad. And it got her. She had symptoms for about a year prior to May but didn't mention them. Not to her physician husband. Not to her kids. Until it got real bad. And even then she confided in her sisters for a few months before asking my dad for help. Maybe if she spoke up earlier, it would've been a bit better? Or, as the oncologist told us, it was a mutated variant that wasn't going to respond to immunotherapy and chemo was the only hope.
I don't know. I'm not going to review the tapes like a coach for a sports team. It happened. She was at peace at time of diagnosis and at the time of her passing. If she had to go, it could have been a lot more chaotic and heartbreaking. It could have always been worse.
It hasn't even been seven hours since her passing. I don't know if it has hit me yet. I prepped for this, mentally, since her diagnosis. Maybe the silver lining was the Universe gave us all a 4 month trial period of life without her at home and plenty of instances to cry and wonder about the future. I don't think I have the future figured out without a mom but it doesn't feel as daunting as I would have thought it to be six months ago.
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@dilla
It's hard to lose your mum at any age. It never gets easier. I feel your pain. You need to ensure you grieve properly too. Don't think you need to be strong for your Dad.
It's going to be really tough for your Dad. Something you've already acknowledged...
Also... I think the suddenness of it. Emotionally a massive rollercoaster without a lot of time to process it.
If anything, this is why Streethop exists. A place where strangers who are friends can vent and share, and support one another
It's hard to lose your mum at any age. It never gets easier. I feel your pain. You need to ensure you grieve properly too. Don't think you need to be strong for your Dad.
It's going to be really tough for your Dad. Something you've already acknowledged...
Also... I think the suddenness of it. Emotionally a massive rollercoaster without a lot of time to process it.
If anything, this is why Streethop exists. A place where strangers who are friends can vent and share, and support one another
Thanks Katie. We found out right around the time that you had your procedure done a few months back. I remember thinking about how just after reading about your awful health experiences, my family was about to go through health issues just as yours, hopefully, was ending. It was our first time dealing with health stuff as a family and it was all so new to us.
He's still going through the process. We all are but he's a bit further behind than my sister and I. My sister and I spent the most time with her and she was never alone during those 4 months since we were always worried something would happen if we even left her alone to get a gallon of milk from the store.
His family came by as well and his brother will be staying about a month. His cousin also came from the UK and despite his stay being a brief one, I think a lot of good came from the stay.
We're starting to get back in to a routine this week. My mom was essentially the office manager for my dad and while my sister and I managed to take care of minor, day to day stuff while my mom was out of office, things have changed and we'll be taking on a lot more responsibility now. I think we'll finally realize just how much she did for the office behind the scenes.
Her funeral was Thursday and it was incredible how many people showed up. My dad's patients showed up because they knew her from their visits. My dad's physician colleagues showed up too. It was not a small event. We figured 100-150 from rough estimates but it very well could've been double that amount.
The happy-sad part of it was I saw several families there that my mom had stopped talking to almost 20 years ago. And they too were crying and not just there to show their faces and say "I was there, I've done enough." It shows that it takes a ton of effort to avoid/ignore someone, especially when you know both of you are wrong and just too proud to admit it and acknowledge it. Same goes for my dad, who had people he had fucked off a long time ago and who still drove 8 hours, round trip, in a day to get to the funeral.
It wasn't just friends; my dad's only brother/sibling flew in from Singapore within two days and made it to the funeral. 12 years since they last met and about 10 years where it was a bitter fight over personal things. It turns out they missed my sister and I, the kids, this whole time. Their shitty feud deprived them of contact with each other's children who were going through much worse during that time. I'll spare the details, though.
I got to meet my cousins on my mom's side too. Not all of them but a good amount of them and there were a lot of good conversations to be had between use about our parents and how their feuds affected us. We all agreed to remain in touch but just the week they were here, we found a lot about our aunts and uncles that we never knew before. It boiled down to our parents having similar issues with each other and their siblings and how the children suffered as a result. It seems to be common knowledge to many other people that "all families have issues" but there's a philosophical aspect to it where how do you know this if you don't even see your family in the first place? Most people still meet with family because they are close by and then regret it afterwards after conflicts arise. But if your family is spread out across three continents and they seldom meet each other, how do learn the dynamics of your family?
Anyway, the weeks was a mix of happiness and sadness, as it should have been. Some days we sat at home and other days we went out to random shops and coffee shops and restaurants. Some discussions were sad and some full of laughter. My mom wasn't the sole topic of discussion either as it turns out I have both a crazy uncle and aunt. I knew this, but because I experienced it when I was much younger and not often, I could appreciate the insanity more as an adult. My uncle proudly stated he shits blood if he's away from home for than ten days and my aunts ate the unopened/uneaten food off a patient's tray in the hallway in the hospital because the hospital canteen was closed.
I don't know how life will be from here on out but one week with family really softened the blow from losing a mom. It could've been worse. For us, at least. For my mom, her disease took her through every side effect and complication the doctors could've imagined. But at least her final gift to us was dissolving the issues between her siblings as well as between family friends. Quite a price to pay for even just a taste of peace and support.
He's still going through the process. We all are but he's a bit further behind than my sister and I. My sister and I spent the most time with her and she was never alone during those 4 months since we were always worried something would happen if we even left her alone to get a gallon of milk from the store.
His family came by as well and his brother will be staying about a month. His cousin also came from the UK and despite his stay being a brief one, I think a lot of good came from the stay.
We're starting to get back in to a routine this week. My mom was essentially the office manager for my dad and while my sister and I managed to take care of minor, day to day stuff while my mom was out of office, things have changed and we'll be taking on a lot more responsibility now. I think we'll finally realize just how much she did for the office behind the scenes.
Her funeral was Thursday and it was incredible how many people showed up. My dad's patients showed up because they knew her from their visits. My dad's physician colleagues showed up too. It was not a small event. We figured 100-150 from rough estimates but it very well could've been double that amount.
The happy-sad part of it was I saw several families there that my mom had stopped talking to almost 20 years ago. And they too were crying and not just there to show their faces and say "I was there, I've done enough." It shows that it takes a ton of effort to avoid/ignore someone, especially when you know both of you are wrong and just too proud to admit it and acknowledge it. Same goes for my dad, who had people he had fucked off a long time ago and who still drove 8 hours, round trip, in a day to get to the funeral.
It wasn't just friends; my dad's only brother/sibling flew in from Singapore within two days and made it to the funeral. 12 years since they last met and about 10 years where it was a bitter fight over personal things. It turns out they missed my sister and I, the kids, this whole time. Their shitty feud deprived them of contact with each other's children who were going through much worse during that time. I'll spare the details, though.
I got to meet my cousins on my mom's side too. Not all of them but a good amount of them and there were a lot of good conversations to be had between use about our parents and how their feuds affected us. We all agreed to remain in touch but just the week they were here, we found a lot about our aunts and uncles that we never knew before. It boiled down to our parents having similar issues with each other and their siblings and how the children suffered as a result. It seems to be common knowledge to many other people that "all families have issues" but there's a philosophical aspect to it where how do you know this if you don't even see your family in the first place? Most people still meet with family because they are close by and then regret it afterwards after conflicts arise. But if your family is spread out across three continents and they seldom meet each other, how do learn the dynamics of your family?
Anyway, the weeks was a mix of happiness and sadness, as it should have been. Some days we sat at home and other days we went out to random shops and coffee shops and restaurants. Some discussions were sad and some full of laughter. My mom wasn't the sole topic of discussion either as it turns out I have both a crazy uncle and aunt. I knew this, but because I experienced it when I was much younger and not often, I could appreciate the insanity more as an adult. My uncle proudly stated he shits blood if he's away from home for than ten days and my aunts ate the unopened/uneaten food off a patient's tray in the hallway in the hospital because the hospital canteen was closed.
I don't know how life will be from here on out but one week with family really softened the blow from losing a mom. It could've been worse. For us, at least. For my mom, her disease took her through every side effect and complication the doctors could've imagined. But at least her final gift to us was dissolving the issues between her siblings as well as between family friends. Quite a price to pay for even just a taste of peace and support.
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