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My mom has ovarian cancer, and I have a simple request from GAF

0neAnd0nly

Gold Member
Lengthy update ahead:

My mom is still here with me, though the days have gotten harder.

Mom's cancer came back in December for a third time. A third FRIGGIN time in 3 years. Remission shorter than the ones before. This isn't... unexpected. It's a tough and aggressive terminal cancer. Her odds of making it 24 months weren't high, and we are currently at 3 and 1/2 years, so she has nearly doubled that.

That news came fresh on the heels of tragedy in my family. My grandmother, the glue to our entire family structure, passed away in August of 2022. She was just 2 weeks shy of her 93rd birthday. That sounds crazy, but my grandmother was no feeble person at that age. She was pretty spry, heck - the woman would throw the baseball and football with me during my teenage years when she was in her 70s. She was an important person to me, and the mother to my wonderful mother. She fell into a Coma, woke up after 2 weeks, only to then pass away the next month. My mom was strong, but grieving, and then with that wound fresh had to deal with her cancers horrendous return.

With the rediagnosis around Christmas time, mom set up to start chemo again in January of this year. She decided she wanted to take a vacation, so we did. In January we visited the mountains and spent family time together. Then we ended up at the happiest place on earth. All was well. Memories that will last a life time. Mom had returned home, ready to start her scheduled treatment... and then a new issue formed.

My mom began to bleed and feel awful during the return home from vacation. As soon as we returned home, I took my mom to the ER. Her platelets were dangerously low, and this had happened before... chemo can wreak havoc on them. For those who don't know, platelets in your blood are what causes it to clot. A normal human has around 100,000 - 140,000 from a given sample. My moms came back at 9,000. Under 40,000 us severe, and under 10,000 is an emergency with extreme risk of spontaneous bleeding which can lead to internal bleeding out or strokes.

No worries, right? Another platelet infusion should do the trick. Should.

But it didn't.

After 5 days in the ER, the hospital decided to test her bone marrow. The next week, after multiple transfusion and infusion of both blood and platelets (she was also anemic and her hemoglobin had dropped during the stay) the levels had a slight uptick and they elected to release her. The week following, we took mom to her cancer center to re-evaluate what was occurring and figure out the plan. The chemo must be taking a toll... we will get it figured out. Yeah... we will get it figured out!

And then the news hit as her oncologist walked through the room door with a concerned face. Mom's bone marrow test came back. She has now also developed Leukemia. Not just any leukemia, a very rare form of Leukemia called Chronic Myelomonocytic Leukemia, or CMML for short.

The words left her Doctors mouth, and a tear rolled down my mom's face. That was tough. The prognosis followed... which was bleak. There is no cure, and many of the treatments options that did exist - don't exist for my mom, because she is battling another terminal cancer. The kicker of it all is that her theory is that the CMML was likely caused from the chemotherapy for the Ovarian Cancer, as studies have shown it could in very rare cases.

I felt like the words were said in a slur or blur all together. I got up, and walked out of the room to my wife who was waiting in the parking lot ignorant of the news that just unfolded. I walked to her car, looked at her and shook my head and just sobbed as she held me. I really don't get why such an amazing person, a truly wonderful person like my mom has been hit so incredibly hard.

I packed my feelings back up, and walked back inside, back through her room door in the doctor office and sat back down next to my mom and held her hand. Her oncologist and my family have become close. She looked at me, and said she would do what she could. She promised she would. We left and went home.

A week later we had an appointment with her oncologist again, and as she walked through the door she looked tired but also had a small spark in her step. She said she had spent hours the weekend prior to this appointment studying what avenues there could be. Canceling out many due to the underlying ovarian cancer, but devising a plan slowly and carefully, and she thinks she may have found a path. She submitted my mom for an immunotherapy drug to battle the ovarian cancer, and had gotten my mom approved. She also found a treatment that could work alongside for the CMML in the form of a targeted chemo, and though there were side affect, she knew my mom was a fighter. There was hope, again.

My mom was still routinely getting platelet infusions and blood transfusions in the mean time as her body battled the two cancers. The targeted chemo drug would take a few months to show any improvement, so we knew it would be a long haul. Meanwhile my mom would pour blood from a simple scratch, have her eyes hemorrhage spontaneously, lose her ability to breathe comfortably from her anemic state. But then she would have good days too.Days when the platelet infusion would help, days when her hemoglobin was normal and she would be herself. All worth it. All working.

Until it didn't.

Platelets are not something one can do infinitely. Your body begins to form antibodies to fight them, and my mom was starting to have reactions after every infusion. Shivering and convulsing, she would be incapacitated for an hour or so after every infusion. And then they stopped having any affect at all. She would go in with 10,000 and leave with 9,000. Her body was deteriorating rapidly, and things were not working the way they should. She was in the hospital again.

This time, I contacted one of the best clinics in the world who happened to have a location in my state. They don't always accept patients, but they just opened up briefly on the day I checked. On top of that, they had a specialist for CMML. Unreal. Blessed.

My moms oncologist ordered my mom special platelets called HLA, which were harder to get but did have a small affect and anything was welcome. In the meantime mom met with the CMML specialist, who offered to work in conjunction with my moms primary oncologist to form a plan of attack and steps along the way. Soon after, the HLA platelets brought the same nasty reaction to my mom the standard ones did as well, and soon after that they stopped helping at all. Her oncologist ordered her even more specialized platelets, this time specifically cross matched to my moms antibodies.

This worked. It actually worked, and for the first time in a while a positive turn of events showed my moms platelets and blood stabilizing, and she was handling the immunotherapy and new targeted chemo treatments well.

Things are working!

Then... out of the blue a month ago, my mom got ill. She stopped eating, she started talking of her stomach hurting. She looked... pale. She lied about how bad it was for a while as I pushed for her to go to the hospital, until one night she couldn't hide it anymore and she had to go. On the verge of passing out, my mom was quickly admitted to the hospital through the ER. A CT scan revealed massive inflammation in her intestines, the doctor at the Hospital said "does she have a family history of colon cancer?"

It can't be.

It really can't be.

My mom JUST had a PT scan to see her ovarian cancer after the immunotherapy and targeted chemo, and we had GOOD news only the week before. For the third battle with ovarian, her TUMORS SHRUNK. Amazing! We were so ecstatic, and just like THAT - the flame of hope was snuffed by the ER doctor.

But, as we told him about the PT, he said "maybe it isn't a mass, maybe there is something else wrong", and as she was admitted to the hospital for what ended up being a 10 day stay, her doctors found something else. Thankfully, it wasn't a mass. Thankfully she didn't develop a third cancer. What was happening was her intestinal walls were infected from the cancer and treatments thinning her intestinal lining, and the immunotherapy causing the body to sort of attack itself. The oncologist came to the hospital and explained that sometimes this can happen with immunotherapy treatments, and that it didn't mean "game over", but my mom would need to take a break. During her 10 day stay, we started to see the real affects of her targeted chemo take affect as her body begin producing it's own platelets for the first times in months. Silver lining! She just needed to beat this stomach infection, and the would do so by being given a "antibiotic cocktail" during her stay.

My mom started to come back to being herself.

We went home after her 10 day stay, she started eating again, she started looking healthy again. In the meantime a second appointment with the specialist came and went, as did a visit with a genetic counselor and doctor at the same clinic. Incredibly interesting things I learned at the genetics counseling, one of which being my mom tested negative for virtually all cancer markers. My mom had gotten breast cancer a decade ago, Ovarian cancer 3 years ago, and CMML all "by chance". Noting that the CMML was likely caused by the treatments for Ovarian cancer, it is still considering by chance because it wasn't a indicative of a genetic predisposition,

Her CMML specialist called my mom "a well visit" jokingly and said she was doing great and she had made it through 4 of her targeted chemo and it was time shortly for another bone marrow biopsy to see if it was having real affect on the cancer.

For the first time in a long time, I could breathe a sigh of relief, as could my mother, as could my family. We were happy. There was hope.

Then last week, something innocuous manifested. My mom was telling us how she got a splinter in her finger that had been bothering her. She was going to her cancer center that day for treatment (the targeted chemo, during this portion she had missed her immunotherapy treatment because she was in the hospital with the stomach issue) and her nurse happily dug the splinter out with sterile equipment. The next day, my mom said her finger hurt still, and we looked at it. It was bright red... and rapidly swelling. My mom had an infection, thanks to the CMML, and her oncologist quickly told her to come back in once she was notified. They started my mom on antibiotics again to help fight it, which did stabilize the swelling and helped. My mom said over the next 2 days the pain was subsiding. On the third morning after her antibiotics began, she told me and my wife, casually that morning, that she had fallen the night before going to the restroom on her tile floor. She landed on her knee, but was fine - it "didn't hurt that bad", and there was only a small bruise.

3 days go by, and my mom mentions again that her leg is hurting a little more than it did the morning after the night she fell. We look at her knee and note that it is red, but still a small area that was formerly the bruise. This knee my mother has is prosthetic, she had a knee replacement in it about 6 years ago.

I think nothing of it much, as my mom is still taking her course of antibiotics for her finger, and surely her knee couldn't get infected.

But my wife notices the spot feels hot to the touch. I was still in denial. We agree to circle it with a marker, and revisit it the next day, see if anything changed.

If anything changed.

It did, of course. My mom entire knee cap area was taken over by a bright red rash, hot to the touch, and she was having difficult moving it without pain. No. Please no. I rush my mom to the ER, I felt mad and angry - I told her she couldn't fall, she couldn't do stuff like that. She could have called us for help. I was scared, in hindsight, but channeled it into anger at the situation. I take my mom in the ER, and they quickly admit her for stay at the hospital.

This was a week ago.

My mom isn't eating again, she is in the hospital for an extended time, but her knee does begin to get better with another "antibiotic cocktail".

But nothing is ever easy.

And even with her knee thankfully turning the corner, the infection being superficial and not in her joint (thank God, truly) - my moms platelets were yet again having issues. First they were 10,000, then 9000, then 8000, then 7000. The hospital would not release her, because her platelets were so low. They were not able to find a match for hers, and we had found out the week before this happened that the cancer center was no longer to get matched platelets from the blood bank either. My mom had had too many infusions, and it had become virtually impossible to find any platelets to help.


Her blood responded similarly. Dropped to 5.2 hemoglobin at one point, putting her super anemic.

No, please God, no. We had so much joy in the weeks prior. The news had been all so positive. Please... not like this.

My moms CMML specialist works at a different clinic than the hospital my mom was at, but the oncologist my mom goes to also comes to the hospital and they put in a request to her CMML specialist to contact them. He was on vacation, but accepted the call anyway. He advised the hospital what to do, IVIG? I think it was called.

This... actually... worked. My moms platelets begin to scrape back upwards slowly and surely. She got to 14 this morning, and finally the doctors unanimously cleared her to leave.

Moms coming home.

But she had a scheduled appointment with the oncologist this afternoon, and got out in time to go - so we did.

Her oncologist for the first time in a long time... seemed frustrated.

The things about caring for a loved one with cancer, is the things you don't think about. How hard my mom pushes, how many transfusion and infusions she endures just to fight and be here for her kids, for her grandkids.

But her oncologist today didn't like the recent events of my moms health, and she is begins talking about quality of life.

GAF, I don't know what else to say here. It's so strangely pointed that someone bumped the thread today... with everything culminating at 11:30 this morning.

My mom's oncologist has suggested my mom transfer full care to her CMML specialist, and wants my mom to pause her ovarian cancer treatment for now.

"You need to be aware, that at any time something could happen".

I am sorry if my writing today is erratic, and full of errors. But I feel far too young for this reality. As someone who barely left their 20s behind I feel far, far too young to face the reality of the situation. I find myself breaking down a lot these days, uncertain of life in so many ways. Uncertain of how to tell my children, how to prepare myself.

My mom isn't giving up. She is a fighter. But the battle is beginning to wear, and really show it's nasty side. She will take a break from treatments for now, and together tonight like every night, we prayed for healing and miracles. God willing, she will get those prayers answered. God willing.


Hug your loved ones. Always and any time you can. Especially if you have a mom anywhere near as good as mine.

I don't want this to feel like I am closing these updates or that everything is bleak. It's just a very real reality shift today and this month, that my mom is constantly at war, and unfortunately with an enemy that plays with cards well up its sleeves.


I will update again soon, and I pray and hope the next update is another upwards portion of the rollercoaster. I also want to give you hope, as bleak as some of this sounds. If you or a loved one faces cancer, it ISN'T IMPOSSIBLE TO BEAT THE ODDS. My mom HAS beaten so many, as I alluded to prior - her original prognosis of making it 2 years was so low. And she did it, and beyond. When the Leukemia was found early this year - her oncologist said "months, or weeks".

She has constantly beaten the odds. Doctors aren't perfect and neither is data. There are always anomalies. Never stop fighting, never stop praying.
Keep us posted, we're here for you & cheering for your mom 🙂

Thank you, Zelphyr, for several reasons. Truly. Thank you for checking in.

Stay strong man. I lost my dad to cancer 3 years ago and it was tough. Send me go fund me link

I am so sorry to hear that. I try so hard to find the silver linings, and I have found several. I have made friends on here through this situation, and even people going through similar situations that we have been able to share our experiences and help each other. I will PM you the link, but don't at all feel any pressure to donate. We know times are tough for everybody.

Hey hope it goes well but you should check out this Dr. and his insight on cancer


I will absolutely watch this tonight! Thank you for the link.
 

Dr. Claus

Vincit qui se vincit
Lengthy update ahead:

My mom is still here with me, though the days have gotten harder.

Mom's cancer came back in December for a third time. A third FRIGGIN time in 3 years. Remission shorter than the ones before. This isn't... unexpected. It's a tough and aggressive terminal cancer. Her odds of making it 24 months weren't high, and we are currently at 3 and 1/2 years, so she has nearly doubled that.

That news came fresh on the heels of tragedy in my family. My grandmother, the glue to our entire family structure, passed away in August of 2022. She was just 2 weeks shy of her 93rd birthday. That sounds crazy, but my grandmother was no feeble person at that age. She was pretty spry, heck - the woman would throw the baseball and football with me during my teenage years when she was in her 70s. She was an important person to me, and the mother to my wonderful mother. She fell into a Coma, woke up after 2 weeks, only to then pass away the next month. My mom was strong, but grieving, and then with that wound fresh had to deal with her cancers horrendous return.

With the rediagnosis around Christmas time, mom set up to start chemo again in January of this year. She decided she wanted to take a vacation, so we did. In January we visited the mountains and spent family time together. Then we ended up at the happiest place on earth. All was well. Memories that will last a life time. Mom had returned home, ready to start her scheduled treatment... and then a new issue formed.

My mom began to bleed and feel awful during the return home from vacation. As soon as we returned home, I took my mom to the ER. Her platelets were dangerously low, and this had happened before... chemo can wreak havoc on them. For those who don't know, platelets in your blood are what causes it to clot. A normal human has around 100,000 - 140,000 from a given sample. My moms came back at 9,000. Under 40,000 us severe, and under 10,000 is an emergency with extreme risk of spontaneous bleeding which can lead to internal bleeding out or strokes.

No worries, right? Another platelet infusion should do the trick. Should.

But it didn't.

After 5 days in the ER, the hospital decided to test her bone marrow. The next week, after multiple transfusion and infusion of both blood and platelets (she was also anemic and her hemoglobin had dropped during the stay) the levels had a slight uptick and they elected to release her. The week following, we took mom to her cancer center to re-evaluate what was occurring and figure out the plan. The chemo must be taking a toll... we will get it figured out. Yeah... we will get it figured out!

And then the news hit as her oncologist walked through the room door with a concerned face. Mom's bone marrow test came back. She has now also developed Leukemia. Not just any leukemia, a very rare form of Leukemia called Chronic Myelomonocytic Leukemia, or CMML for short.

The words left her Doctors mouth, and a tear rolled down my mom's face. That was tough. The prognosis followed... which was bleak. There is no cure, and many of the treatments options that did exist - don't exist for my mom, because she is battling another terminal cancer. The kicker of it all is that her theory is that the CMML was likely caused from the chemotherapy for the Ovarian Cancer, as studies have shown it could in very rare cases.

I felt like the words were said in a slur or blur all together. I got up, and walked out of the room to my wife who was waiting in the parking lot ignorant of the news that just unfolded. I walked to her car, looked at her and shook my head and just sobbed as she held me. I really don't get why such an amazing person, a truly wonderful person like my mom has been hit so incredibly hard.

I packed my feelings back up, and walked back inside, back through her room door in the doctor office and sat back down next to my mom and held her hand. Her oncologist and my family have become close. She looked at me, and said she would do what she could. She promised she would. We left and went home.

A week later we had an appointment with her oncologist again, and as she walked through the door she looked tired but also had a small spark in her step. She said she had spent hours the weekend prior to this appointment studying what avenues there could be. Canceling out many due to the underlying ovarian cancer, but devising a plan slowly and carefully, and she thinks she may have found a path. She submitted my mom for an immunotherapy drug to battle the ovarian cancer, and had gotten my mom approved. She also found a treatment that could work alongside for the CMML in the form of a targeted chemo, and though there were side affect, she knew my mom was a fighter. There was hope, again.

My mom was still routinely getting platelet infusions and blood transfusions in the mean time as her body battled the two cancers. The targeted chemo drug would take a few months to show any improvement, so we knew it would be a long haul. Meanwhile my mom would pour blood from a simple scratch, have her eyes hemorrhage spontaneously, lose her ability to breathe comfortably from her anemic state. But then she would have good days too.Days when the platelet infusion would help, days when her hemoglobin was normal and she would be herself. All worth it. All working.

Until it didn't.

Platelets are not something one can do infinitely. Your body begins to form antibodies to fight them, and my mom was starting to have reactions after every infusion. Shivering and convulsing, she would be incapacitated for an hour or so after every infusion. And then they stopped having any affect at all. She would go in with 10,000 and leave with 9,000. Her body was deteriorating rapidly, and things were not working the way they should. She was in the hospital again.

This time, I contacted one of the best clinics in the world who happened to have a location in my state. They don't always accept patients, but they just opened up briefly on the day I checked. On top of that, they had a specialist for CMML. Unreal. Blessed.

My moms oncologist ordered my mom special platelets called HLA, which were harder to get but did have a small affect and anything was welcome. In the meantime mom met with the CMML specialist, who offered to work in conjunction with my moms primary oncologist to form a plan of attack and steps along the way. Soon after, the HLA platelets brought the same nasty reaction to my mom the standard ones did as well, and soon after that they stopped helping at all. Her oncologist ordered her even more specialized platelets, this time specifically cross matched to my moms antibodies.

This worked. It actually worked, and for the first time in a while a positive turn of events showed my moms platelets and blood stabilizing, and she was handling the immunotherapy and new targeted chemo treatments well.

Things are working!

Then... out of the blue a month ago, my mom got ill. She stopped eating, she started talking of her stomach hurting. She looked... pale. She lied about how bad it was for a while as I pushed for her to go to the hospital, until one night she couldn't hide it anymore and she had to go. On the verge of passing out, my mom was quickly admitted to the hospital through the ER. A CT scan revealed massive inflammation in her intestines, the doctor at the Hospital said "does she have a family history of colon cancer?"

It can't be.

It really can't be.

My mom JUST had a PT scan to see her ovarian cancer after the immunotherapy and targeted chemo, and we had GOOD news only the week before. For the third battle with ovarian, her TUMORS SHRUNK. Amazing! We were so ecstatic, and just like THAT - the flame of hope was snuffed by the ER doctor.

But, as we told him about the PT, he said "maybe it isn't a mass, maybe there is something else wrong", and as she was admitted to the hospital for what ended up being a 10 day stay, her doctors found something else. Thankfully, it wasn't a mass. Thankfully she didn't develop a third cancer. What was happening was her intestinal walls were infected from the cancer and treatments thinning her intestinal lining, and the immunotherapy causing the body to sort of attack itself. The oncologist came to the hospital and explained that sometimes this can happen with immunotherapy treatments, and that it didn't mean "game over", but my mom would need to take a break. During her 10 day stay, we started to see the real affects of her targeted chemo take affect as her body begin producing it's own platelets for the first times in months. Silver lining! She just needed to beat this stomach infection, and the would do so by being given a "antibiotic cocktail" during her stay.

My mom started to come back to being herself.

We went home after her 10 day stay, she started eating again, she started looking healthy again. In the meantime a second appointment with the specialist came and went, as did a visit with a genetic counselor and doctor at the same clinic. Incredibly interesting things I learned at the genetics counseling, one of which being my mom tested negative for virtually all cancer markers. My mom had gotten breast cancer a decade ago, Ovarian cancer 3 years ago, and CMML all "by chance". Noting that the CMML was likely caused by the treatments for Ovarian cancer, it is still considering by chance because it wasn't a indicative of a genetic predisposition,

Her CMML specialist called my mom "a well visit" jokingly and said she was doing great and she had made it through 4 of her targeted chemo and it was time shortly for another bone marrow biopsy to see if it was having real affect on the cancer.

For the first time in a long time, I could breathe a sigh of relief, as could my mother, as could my family. We were happy. There was hope.

Then last week, something innocuous manifested. My mom was telling us how she got a splinter in her finger that had been bothering her. She was going to her cancer center that day for treatment (the targeted chemo, during this portion she had missed her immunotherapy treatment because she was in the hospital with the stomach issue) and her nurse happily dug the splinter out with sterile equipment. The next day, my mom said her finger hurt still, and we looked at it. It was bright red... and rapidly swelling. My mom had an infection, thanks to the CMML, and her oncologist quickly told her to come back in once she was notified. They started my mom on antibiotics again to help fight it, which did stabilize the swelling and helped. My mom said over the next 2 days the pain was subsiding. On the third morning after her antibiotics began, she told me and my wife, casually that morning, that she had fallen the night before going to the restroom on her tile floor. She landed on her knee, but was fine - it "didn't hurt that bad", and there was only a small bruise.

3 days go by, and my mom mentions again that her leg is hurting a little more than it did the morning after the night she fell. We look at her knee and note that it is red, but still a small area that was formerly the bruise. This knee my mother has is prosthetic, she had a knee replacement in it about 6 years ago.

I think nothing of it much, as my mom is still taking her course of antibiotics for her finger, and surely her knee couldn't get infected.

But my wife notices the spot feels hot to the touch. I was still in denial. We agree to circle it with a marker, and revisit it the next day, see if anything changed.

If anything changed.

It did, of course. My mom entire knee cap area was taken over by a bright red rash, hot to the touch, and she was having difficult moving it without pain. No. Please no. I rush my mom to the ER, I felt mad and angry - I told her she couldn't fall, she couldn't do stuff like that. She could have called us for help. I was scared, in hindsight, but channeled it into anger at the situation. I take my mom in the ER, and they quickly admit her for stay at the hospital.

This was a week ago.

My mom isn't eating again, she is in the hospital for an extended time, but her knee does begin to get better with another "antibiotic cocktail".

But nothing is ever easy.

And even with her knee thankfully turning the corner, the infection being superficial and not in her joint (thank God, truly) - my moms platelets were yet again having issues. First they were 10,000, then 9000, then 8000, then 7000. The hospital would not release her, because her platelets were so low. They were not able to find a match for hers, and we had found out the week before this happened that the cancer center was no longer to get matched platelets from the blood bank either. My mom had had too many infusions, and it had become virtually impossible to find any platelets to help.


Her blood responded similarly. Dropped to 5.2 hemoglobin at one point, putting her super anemic.

No, please God, no. We had so much joy in the weeks prior. The news had been all so positive. Please... not like this.

My moms CMML specialist works at a different clinic than the hospital my mom was at, but the oncologist my mom goes to also comes to the hospital and they put in a request to her CMML specialist to contact them. He was on vacation, but accepted the call anyway. He advised the hospital what to do, IVIG? I think it was called.

This... actually... worked. My moms platelets begin to scrape back upwards slowly and surely. She got to 14 this morning, and finally the doctors unanimously cleared her to leave.

Moms coming home.

But she had a scheduled appointment with the oncologist this afternoon, and got out in time to go - so we did.

Her oncologist for the first time in a long time... seemed frustrated.

The things about caring for a loved one with cancer, is the things you don't think about. How hard my mom pushes, how many transfusion and infusions she endures just to fight and be here for her kids, for her grandkids.

But her oncologist today didn't like the recent events of my moms health, and she is begins talking about quality of life.

GAF, I don't know what else to say here. It's so strangely pointed that someone bumped the thread today... with everything culminating at 11:30 this morning.

My mom's oncologist has suggested my mom transfer full care to her CMML specialist, and wants my mom to pause her ovarian cancer treatment for now.

"You need to be aware, that at any time something could happen".

I am sorry if my writing today is erratic, and full of errors. But I feel far too young for this reality. As someone who barely left their 20s behind I feel far, far too young to face the reality of the situation. I find myself breaking down a lot these days, uncertain of life in so many ways. Uncertain of how to tell my children, how to prepare myself.

My mom isn't giving up. She is a fighter. But the battle is beginning to wear, and really show it's nasty side. She will take a break from treatments for now, and together tonight like every night, we prayed for healing and miracles. God willing, she will get those prayers answered. God willing.


Hug your loved ones. Always and any time you can. Especially if you have a mom anywhere near as good as mine.

I don't want this to feel like I am closing these updates or that everything is bleak. It's just a very real reality shift today and this month, that my mom is constantly at war, and unfortunately with an enemy that plays with cards well up its sleeves.


I will update again soon, and I pray and hope the next update is another upwards portion of the rollercoaster. I also want to give you hope, as bleak as some of this sounds. If you or a loved one faces cancer, it ISN'T IMPOSSIBLE TO BEAT THE ODDS. My mom HAS beaten so many, as I alluded to prior - her original prognosis of making it 2 years was so low. And she did it, and beyond. When the Leukemia was found early this year - her oncologist said "months, or weeks".

She has constantly beaten the odds. Doctors aren't perfect and neither is data. There are always anomalies. Never stop fighting, never stop praying.


Thank you, Zelphyr, for several reasons. Truly. Thank you for checking in.



I am so sorry to hear that. I try so hard to find the silver linings, and I have found several. I have made friends on here through this situation, and even people going through similar situations that we have been able to share our experiences and help each other. I will PM you the link, but don't at all feel any pressure to donate. We know times are tough for everybody.



I will absolutely watch this tonight! Thank you for the link.

I watched my grandmother fight for nearly 20 years. First it was esophageal cancer. Then it was pancreatic. Then it was colon. Then it was lungs. She never game up and kept fighting day after day. She is one of the main reasons I am currently working towards an MD-PhD in Oncology. I wish the absolute best for you and yours.
 

Go_Ly_Dow

Member
Thank you for sharing her strength with us and wishing her all the best. ❤️ My mother has follicular lymphoma and had chemo last year and got it into complete remission. Her side effects whilst on treatment were relatively low. She supplemented vitamin d - (4000iu) with k2 quite often and also ate a lot of vegetables, like brocoli and cauliflower. Maybe they all helped to protect her cells. Something worth looking into. 👍
 

John Marston

GAF's very own treasure goblin
Lengthy update ahead:

My mom is still here with me, though the days have gotten harder.

Mom's cancer came back in December for a third time. A third FRIGGIN time in 3 years. Remission shorter than the ones before. This isn't... unexpected. It's a tough and aggressive terminal cancer. Her odds of making it 24 months weren't high, and we are currently at 3 and 1/2 years, so she has nearly doubled that.

That news came fresh on the heels of tragedy in my family. My grandmother, the glue to our entire family structure, passed away in August of 2022. She was just 2 weeks shy of her 93rd birthday. That sounds crazy, but my grandmother was no feeble person at that age. She was pretty spry, heck - the woman would throw the baseball and football with me during my teenage years when she was in her 70s. She was an important person to me, and the mother to my wonderful mother. She fell into a Coma, woke up after 2 weeks, only to then pass away the next month. My mom was strong, but grieving, and then with that wound fresh had to deal with her cancers horrendous return.

With the rediagnosis around Christmas time, mom set up to start chemo again in January of this year. She decided she wanted to take a vacation, so we did. In January we visited the mountains and spent family time together. Then we ended up at the happiest place on earth. All was well. Memories that will last a life time. Mom had returned home, ready to start her scheduled treatment... and then a new issue formed.

My mom began to bleed and feel awful during the return home from vacation. As soon as we returned home, I took my mom to the ER. Her platelets were dangerously low, and this had happened before... chemo can wreak havoc on them. For those who don't know, platelets in your blood are what causes it to clot. A normal human has around 100,000 - 140,000 from a given sample. My moms came back at 9,000. Under 40,000 us severe, and under 10,000 is an emergency with extreme risk of spontaneous bleeding which can lead to internal bleeding out or strokes.

No worries, right? Another platelet infusion should do the trick. Should.

But it didn't.

After 5 days in the ER, the hospital decided to test her bone marrow. The next week, after multiple transfusion and infusion of both blood and platelets (she was also anemic and her hemoglobin had dropped during the stay) the levels had a slight uptick and they elected to release her. The week following, we took mom to her cancer center to re-evaluate what was occurring and figure out the plan. The chemo must be taking a toll... we will get it figured out. Yeah... we will get it figured out!

And then the news hit as her oncologist walked through the room door with a concerned face. Mom's bone marrow test came back. She has now also developed Leukemia. Not just any leukemia, a very rare form of Leukemia called Chronic Myelomonocytic Leukemia, or CMML for short.

The words left her Doctors mouth, and a tear rolled down my mom's face. That was tough. The prognosis followed... which was bleak. There is no cure, and many of the treatments options that did exist - don't exist for my mom, because she is battling another terminal cancer. The kicker of it all is that her theory is that the CMML was likely caused from the chemotherapy for the Ovarian Cancer, as studies have shown it could in very rare cases.

I felt like the words were said in a slur or blur all together. I got up, and walked out of the room to my wife who was waiting in the parking lot ignorant of the news that just unfolded. I walked to her car, looked at her and shook my head and just sobbed as she held me. I really don't get why such an amazing person, a truly wonderful person like my mom has been hit so incredibly hard.

I packed my feelings back up, and walked back inside, back through her room door in the doctor office and sat back down next to my mom and held her hand. Her oncologist and my family have become close. She looked at me, and said she would do what she could. She promised she would. We left and went home.

A week later we had an appointment with her oncologist again, and as she walked through the door she looked tired but also had a small spark in her step. She said she had spent hours the weekend prior to this appointment studying what avenues there could be. Canceling out many due to the underlying ovarian cancer, but devising a plan slowly and carefully, and she thinks she may have found a path. She submitted my mom for an immunotherapy drug to battle the ovarian cancer, and had gotten my mom approved. She also found a treatment that could work alongside for the CMML in the form of a targeted chemo, and though there were side affect, she knew my mom was a fighter. There was hope, again.

My mom was still routinely getting platelet infusions and blood transfusions in the mean time as her body battled the two cancers. The targeted chemo drug would take a few months to show any improvement, so we knew it would be a long haul. Meanwhile my mom would pour blood from a simple scratch, have her eyes hemorrhage spontaneously, lose her ability to breathe comfortably from her anemic state. But then she would have good days too.Days when the platelet infusion would help, days when her hemoglobin was normal and she would be herself. All worth it. All working.

Until it didn't.

Platelets are not something one can do infinitely. Your body begins to form antibodies to fight them, and my mom was starting to have reactions after every infusion. Shivering and convulsing, she would be incapacitated for an hour or so after every infusion. And then they stopped having any affect at all. She would go in with 10,000 and leave with 9,000. Her body was deteriorating rapidly, and things were not working the way they should. She was in the hospital again.

This time, I contacted one of the best clinics in the world who happened to have a location in my state. They don't always accept patients, but they just opened up briefly on the day I checked. On top of that, they had a specialist for CMML. Unreal. Blessed.

My moms oncologist ordered my mom special platelets called HLA, which were harder to get but did have a small affect and anything was welcome. In the meantime mom met with the CMML specialist, who offered to work in conjunction with my moms primary oncologist to form a plan of attack and steps along the way. Soon after, the HLA platelets brought the same nasty reaction to my mom the standard ones did as well, and soon after that they stopped helping at all. Her oncologist ordered her even more specialized platelets, this time specifically cross matched to my moms antibodies.

This worked. It actually worked, and for the first time in a while a positive turn of events showed my moms platelets and blood stabilizing, and she was handling the immunotherapy and new targeted chemo treatments well.

Things are working!

Then... out of the blue a month ago, my mom got ill. She stopped eating, she started talking of her stomach hurting. She looked... pale. She lied about how bad it was for a while as I pushed for her to go to the hospital, until one night she couldn't hide it anymore and she had to go. On the verge of passing out, my mom was quickly admitted to the hospital through the ER. A CT scan revealed massive inflammation in her intestines, the doctor at the Hospital said "does she have a family history of colon cancer?"

It can't be.

It really can't be.

My mom JUST had a PT scan to see her ovarian cancer after the immunotherapy and targeted chemo, and we had GOOD news only the week before. For the third battle with ovarian, her TUMORS SHRUNK. Amazing! We were so ecstatic, and just like THAT - the flame of hope was snuffed by the ER doctor.

But, as we told him about the PT, he said "maybe it isn't a mass, maybe there is something else wrong", and as she was admitted to the hospital for what ended up being a 10 day stay, her doctors found something else. Thankfully, it wasn't a mass. Thankfully she didn't develop a third cancer. What was happening was her intestinal walls were infected from the cancer and treatments thinning her intestinal lining, and the immunotherapy causing the body to sort of attack itself. The oncologist came to the hospital and explained that sometimes this can happen with immunotherapy treatments, and that it didn't mean "game over", but my mom would need to take a break. During her 10 day stay, we started to see the real affects of her targeted chemo take affect as her body begin producing it's own platelets for the first times in months. Silver lining! She just needed to beat this stomach infection, and the would do so by being given a "antibiotic cocktail" during her stay.

My mom started to come back to being herself.

We went home after her 10 day stay, she started eating again, she started looking healthy again. In the meantime a second appointment with the specialist came and went, as did a visit with a genetic counselor and doctor at the same clinic. Incredibly interesting things I learned at the genetics counseling, one of which being my mom tested negative for virtually all cancer markers. My mom had gotten breast cancer a decade ago, Ovarian cancer 3 years ago, and CMML all "by chance". Noting that the CMML was likely caused by the treatments for Ovarian cancer, it is still considering by chance because it wasn't a indicative of a genetic predisposition,

Her CMML specialist called my mom "a well visit" jokingly and said she was doing great and she had made it through 4 of her targeted chemo and it was time shortly for another bone marrow biopsy to see if it was having real affect on the cancer.

For the first time in a long time, I could breathe a sigh of relief, as could my mother, as could my family. We were happy. There was hope.

Then last week, something innocuous manifested. My mom was telling us how she got a splinter in her finger that had been bothering her. She was going to her cancer center that day for treatment (the targeted chemo, during this portion she had missed her immunotherapy treatment because she was in the hospital with the stomach issue) and her nurse happily dug the splinter out with sterile equipment. The next day, my mom said her finger hurt still, and we looked at it. It was bright red... and rapidly swelling. My mom had an infection, thanks to the CMML, and her oncologist quickly told her to come back in once she was notified. They started my mom on antibiotics again to help fight it, which did stabilize the swelling and helped. My mom said over the next 2 days the pain was subsiding. On the third morning after her antibiotics began, she told me and my wife, casually that morning, that she had fallen the night before going to the restroom on her tile floor. She landed on her knee, but was fine - it "didn't hurt that bad", and there was only a small bruise.

3 days go by, and my mom mentions again that her leg is hurting a little more than it did the morning after the night she fell. We look at her knee and note that it is red, but still a small area that was formerly the bruise. This knee my mother has is prosthetic, she had a knee replacement in it about 6 years ago.

I think nothing of it much, as my mom is still taking her course of antibiotics for her finger, and surely her knee couldn't get infected.

But my wife notices the spot feels hot to the touch. I was still in denial. We agree to circle it with a marker, and revisit it the next day, see if anything changed.

If anything changed.

It did, of course. My mom entire knee cap area was taken over by a bright red rash, hot to the touch, and she was having difficult moving it without pain. No. Please no. I rush my mom to the ER, I felt mad and angry - I told her she couldn't fall, she couldn't do stuff like that. She could have called us for help. I was scared, in hindsight, but channeled it into anger at the situation. I take my mom in the ER, and they quickly admit her for stay at the hospital.

This was a week ago.

My mom isn't eating again, she is in the hospital for an extended time, but her knee does begin to get better with another "antibiotic cocktail".

But nothing is ever easy.

And even with her knee thankfully turning the corner, the infection being superficial and not in her joint (thank God, truly) - my moms platelets were yet again having issues. First they were 10,000, then 9000, then 8000, then 7000. The hospital would not release her, because her platelets were so low. They were not able to find a match for hers, and we had found out the week before this happened that the cancer center was no longer to get matched platelets from the blood bank either. My mom had had too many infusions, and it had become virtually impossible to find any platelets to help.


Her blood responded similarly. Dropped to 5.2 hemoglobin at one point, putting her super anemic.

No, please God, no. We had so much joy in the weeks prior. The news had been all so positive. Please... not like this.

My moms CMML specialist works at a different clinic than the hospital my mom was at, but the oncologist my mom goes to also comes to the hospital and they put in a request to her CMML specialist to contact them. He was on vacation, but accepted the call anyway. He advised the hospital what to do, IVIG? I think it was called.

This... actually... worked. My moms platelets begin to scrape back upwards slowly and surely. She got to 14 this morning, and finally the doctors unanimously cleared her to leave.

Moms coming home.

But she had a scheduled appointment with the oncologist this afternoon, and got out in time to go - so we did.

Her oncologist for the first time in a long time... seemed frustrated.

The things about caring for a loved one with cancer, is the things you don't think about. How hard my mom pushes, how many transfusion and infusions she endures just to fight and be here for her kids, for her grandkids.

But her oncologist today didn't like the recent events of my moms health, and she is begins talking about quality of life.

GAF, I don't know what else to say here. It's so strangely pointed that someone bumped the thread today... with everything culminating at 11:30 this morning.

My mom's oncologist has suggested my mom transfer full care to her CMML specialist, and wants my mom to pause her ovarian cancer treatment for now.

"You need to be aware, that at any time something could happen".

I am sorry if my writing today is erratic, and full of errors. But I feel far too young for this reality. As someone who barely left their 20s behind I feel far, far too young to face the reality of the situation. I find myself breaking down a lot these days, uncertain of life in so many ways. Uncertain of how to tell my children, how to prepare myself.

My mom isn't giving up. She is a fighter. But the battle is beginning to wear, and really show it's nasty side. She will take a break from treatments for now, and together tonight like every night, we prayed for healing and miracles. God willing, she will get those prayers answered. God willing.


Hug your loved ones. Always and any time you can. Especially if you have a mom anywhere near as good as mine.

I don't want this to feel like I am closing these updates or that everything is bleak. It's just a very real reality shift today and this month, that my mom is constantly at war, and unfortunately with an enemy that plays with cards well up its sleeves.


I will update again soon, and I pray and hope the next update is another upwards portion of the rollercoaster. I also want to give you hope, as bleak as some of this sounds. If you or a loved one faces cancer, it ISN'T IMPOSSIBLE TO BEAT THE ODDS. My mom HAS beaten so many, as I alluded to prior - her original prognosis of making it 2 years was so low. And she did it, and beyond. When the Leukemia was found early this year - her oncologist said "months, or weeks".

She has constantly beaten the odds. Doctors aren't perfect and neither is data. There are always anomalies. Never stop fighting, never stop praying.


Thank you, Zelphyr, for several reasons. Truly. Thank you for checking in.



I am so sorry to hear that. I try so hard to find the silver linings, and I have found several. I have made friends on here through this situation, and even people going through similar situations that we have been able to share our experiences and help each other. I will PM you the link, but don't at all feel any pressure to donate. We know times are tough for everybody.



I will absolutely watch this tonight! Thank you for the link.
I had to pause before replying I'm so dizzy and emotional.
Thank you for sharing with us your roller coaster journey.

What can I say? Your mom seems to have an All Star team of specialists in her corner, a loving son and family.

You may not realise it now but your testimony is an example of courage and grace under pressure.

Anything else I say would be a boring cliché.

I'll be thinking of your mom often ❤️
 

0neAnd0nly

Gold Member
I am leaving now to take my mom to the hospital again. She is suffering from stomach pains and has a fever, not even 24 hours after being home.

God bless you all, please continue to pray.
 

Raven117

Gold Member
But her oncologist today didn't like the recent events of my moms health, and she is begins talking about quality of life.

My mom isn't giving up. She is a fighter. But the battle is beginning to wear, and really show it's nasty side. She will take a break from treatments for now, and together tonight like every night, we prayed for healing and miracles. God willing, she will get those prayers answered. God willing.
Man, I'm sorry to read all this. These posts are good as they will provide some much needed history once all of this is over. I would go back through here and put all of your longer posts in a word document so you have a chronicle of this. You will be surpiised how fast your mind tries to lock all of this away.

I lost my mom back when I was 24, my dad just two months ago. Unfortunately, you are a bit young to be dealing with this, but such are the way of things sometimes.

I'm going to give you some practical advice here. Take it or leave it. (Im going to leave all of the "stay strong" and well wishing to the others).

You need to prepare for the end. It may be early...its always going to feel early. And even if you are wrong...well...you have done the leg work anyway. So really, force yourself to do this.

Hopefully this can include your mother, but I can understand if you don't want to include her because it may seem "defeatist." What I mean by prepare is have all of your options and administration lined up.

First, find out who holds the Statutory Power of Attorney and her Medical Power of Attorney. Know what he advance directives are. (You probably already know this).

Second, "quality of life" is code for palliative care which is somewhat code for hospice. Get familar with these terms and understand the decision your family will make. Will she be home for palliative care? In nursing facility? Hospice, same consideration. Home? In a nursing facility? You will also need to pick a medical care provider to adminster these services. I learned that while you (or insurance) pays for say the room and board of nursining facility, another company actually is contracted to provide hospice care. When the call comes to make this decision...its going to come quick...so have something in mind already. Keep in mind the "social worker" at the hospital will be a little helpful...but not really...and you will be really frustrated with this. But...start there. And keep an eye out on what insurance will and wont cover.

Third, find the will (if she has one). Read it. Understand how its going to work. Look at her bank accounts and know who is a Payment on Death beneficiary. (Ie who gets her cash upon death). This can be different from the will. Same with any 401(k) or Investment Accounts. Find out what her understanding of all of this is. It may be different from the documents.

All of this is going to feel premature. But it isn't. Its going to feel like you are giving up. You aren't. You want to be able to do this while your mother is still sharp and with you. It will save you alot of headache in the long run. But more importantly than that, it will free you up to spend the remaining days with her not getting bogged down in any of that, but instead optimzing your quality of time with her. Speaking of good things. Of life and love. Not messing with the stuff.

Please feel free to DM me. I know exactly what you are going through.
 

0neAnd0nly

Gold Member
Update ahead.

My last post left with me taking mom back to the hospital, only 24 hours after returning home.

She was hospitalized the first time for 10 days with the initial stomach issue, second time for 9 with the knee infection. During her second hospital stay, she began to develop severe breathing problems, was put on oxygen and finally released. 24 hours later, AGAIN, she was back in the hospital (as I wrote in my very brief update above). This time, she was taken to MAYO clinic, where her specialist reside.

Mom spent nearly a month in the hospital of these last 2 months. Fighting... hard. This last stint, that I haven't updated since... was the scariest.

As I said in my prior post, the fever and stomach issues began again now paired with increasingly severe issues with oxygen. This all happened insanely fast.

Checking into MAYO Emergency, mom wasn't doing well. Her platelets had dropped again, her blood levels diving. Her breathing deteriorating, and her stomach in so much pain she winced with every movement. She was admitted to the hospital quickly, and then the doctors updated us in the following days.

Moms stomach was again, inflamed. CT scans showed it. Unfortunately, CT scans showed something else. My sister called me to let me know one morning, as I was getting dressed to go back to the hospital for the day (I went every single day, and stayed virtually all day until I would go home, go to sleep and do it all over again). Mom had a CT, and there was something in her lungs. The doctors had not informed my mom yet, because the oncologist wouldn't be making the rounds until the afternoon. My sister had left, and I feel like she knew I would not be able to keep this info from my mom as I went to the hospital, so secretly I believe she just didn't want to be the one to break the news. So, as the man of my family, I had to.

I walked in, sat down next to my mom and held her hand. She was actually feeling better at this point, the doctors had given her tons of antibiotics to get started on the stomach infection, and she was starting to turn the corner. She looked at me and said "what's wrong?".

So I told her. They found something in your lungs, and they don't know what it is. She looked at me, and like many times before during this... she just smiled. She said it would be ok. She said at least they found something to give them some answers of the new complications. Always staying strong, always staying positive. Not sure how she does it.

The next morning broke, with an early morning phone ring as I was still asleep. The doctors had decided that even with my mom low platelets and condition, they needed to do a procedure and it would need to be done today. They would slide a tube down my moms throat, into her lungs - fill them with water, and then suck the fluid out, testing it for bacteria, fungus, cancer cells, etc. They couldn't biopsy anything because she would bleed out.

I didn't like this idea, because everything was dangerous for mom. She thought it was a good idea, and as I arrived to the hospital that day, it was only about an hour before she went back. The doctors assured me the procedure would be safe even with her condition. They explained that this procedure would help them determine if they could administer steroids to help her condition, as it was needed. The reason being I guess infections in the lungs can cause your lungs to collapse if you take certain medications, so they had to clear out certain things before they could try. They were right. Mom did great!

Answers came, and mostly - good news. The doctor told me they didn't see any lesions or masses to biopsy even if they could have. The fluid showed no signs of infection, no signs of bacteria, and no signs of cancer cells.

The theory now, was something her oncologist had eluded to prior. My moms immunotherapy, though working on her cancer - had began to cause these infections. Apparently it is common. The lungs they believe were related, all from the same thing - the immunotherapy response.

Mom started steroids, and within days got much, much better. Today she is sitting next to me at home with my family - oxygen tank GONE, feeling tired but doing much better.

This week hasn't been all good news, but mostly.

Now that she has transitioned care fully to her specialist, her CMML specialist had her do another bone marrow biopsy, and the preliminary report shows it looks "roughly the same" as it did. That's actually good news because it means her targeted therapy, while not improving the cancer, is at the very least stopping it's progress. On top of that, moms blood levels, though not perfect, have stabilized much more. She has only had 2 transfusions since the hospital, and hasn't needed a platelet infusion in weeks - though they are still insanely low (around 20,000), for her that is "doing well!". She asked if he thought she may be around for one more Christmas and he said "I think you have a good chance".

She had an appointment with the Ovarian cancer specialist as well the same day, and his news wasn't bad, but certainly smacked reality back in.

He emphasized that he believed the immunotherapy caused the issues. That she looked so much better than she was in the hospital, and he thought she was doing well now.

He told my mom something that she said she never realized, even though we all knew it.

She almost died. She was close to not coming home at all, when her oxygen reached it's worst point and as her stomach infection peaked. She said she didn't realize it was that bad, but to those of us around it, it was obvious she was in bad condition. He commended her on the turn around.

But with all this came the news that I can't help but focus on. I try not to think about, try to tuck it away.

Mom asked if she could get back on immunotherapy and try it again since everything had cleared up, because it was working against the cancer.

He said that if she went back on it, it would likely kill her this time with the damage it did to the lungs and stomach.

So we asked - when the ovarian cancer comes back again, what is the remaining option for treatment?

With that the doctor smiled. He said, "hopefully, it just doesn't come back soon".

The realization hit me, that there isn't anything left. He explained that with her Leukemia, she can't handle any of the other treatments. No more chemo, nothing.

My mom has fought, and fought hard. Many have prayed, not only here on GAF, here at my home, my church, my community. And at this point, that is the best medicine and the only one. It's all in the Lord's hands now, and mom is hoping her body does it's best to combat the cancer for as long as it can.

Thank you all, again, for the warm wishes, prayers and conversations. I would imagine I won't have an update for a while as mom just continues with weekly appointments and doing what she is told to feel the best she can and stay strong.

Hug your loved ones!
I watched my grandmother fight for nearly 20 years. First it was esophageal cancer. Then it was pancreatic. Then it was colon. Then it was lungs. She never game up and kept fighting day after day. She is one of the main reasons I am currently working towards an MD-PhD in Oncology. I wish the absolute best for you and yours.

Thank you so much. Great field of entry, and you will help others battle as well! 20 years is a heck of a fight, something to be proud of!

Thank you for sharing her strength with us and wishing her all the best. ❤️ My mother has follicular lymphoma and had chemo last year and got it into complete remission. Her side effects whilst on treatment were relatively low. She supplemented vitamin d - (4000iu) with k2 quite often and also ate a lot of vegetables, like brocoli and cauliflower. Maybe they all helped to protect her cells. Something worth looking into. 👍

Thanks for the comment, and my prayers for your moms continued remission! Funny enough (not funny, I guess really) my sister had Hodgkin's Lymphoma in her 20s. She has been cancer free now for nearly 20 years. I hope your mom continues to pound it and your story is similar 20 years from now!

Mom takes a lot of supplemental medications the doctors recommend. Her appetite is up and down, so unfortunately she probably isn't getting everything she should but doing better. She can only eat vegetables at home where we wash them thoroughly, so we have made sure to do that regularly. Will pass on the stuff you mentioned to her doctors. Thanks man.

Will do my man. She sounds like an amazing women

She truly is. Thank you.

I had to pause before replying I'm so dizzy and emotional.
Thank you for sharing with us your roller coaster journey.

What can I say? Your mom seems to have an All Star team of specialists in her corner, a loving son and family.

You may not realise it now but your testimony is an example of courage and grace under pressure.

Anything else I say would be a boring cliché.

I'll be thinking of your mom often ❤️

Thank you, again, Zelphyr. Your kind words mean a ton to me!

0neAnd0nly 0neAnd0nly you're a class act and your Mum's a gem.

Good luck and Godspeed

Thanks a ton man! Part of me doing this on GAF is to show other users that one day may be going through something similar, that people can beat the odds, and here are things that helped me. This community coming together and caring for the mom of a random member is a great inspiration not only for me, but hopefully for others too in the future.

Man, I'm sorry to read all this. These posts are good as they will provide some much needed history once all of this is over. I would go back through here and put all of your longer posts in a word document so you have a chronicle of this. You will be surpiised how fast your mind tries to lock all of this away.

I lost my mom back when I was 24, my dad just two months ago. Unfortunately, you are a bit young to be dealing with this, but such are the way of things sometimes.

I'm going to give you some practical advice here. Take it or leave it. (Im going to leave all of the "stay strong" and well wishing to the others).

You need to prepare for the end. It may be early...its always going to feel early. And even if you are wrong...well...you have done the leg work anyway. So really, force yourself to do this.

Hopefully this can include your mother, but I can understand if you don't want to include her because it may seem "defeatist." What I mean by prepare is have all of your options and administration lined up.

First, find out who holds the Statutory Power of Attorney and her Medical Power of Attorney. Know what he advance directives are. (You probably already know this).

Second, "quality of life" is code for palliative care which is somewhat code for hospice. Get familar with these terms and understand the decision your family will make. Will she be home for palliative care? In nursing facility? Hospice, same consideration. Home? In a nursing facility? You will also need to pick a medical care provider to adminster these services. I learned that while you (or insurance) pays for say the room and board of nursining facility, another company actually is contracted to provide hospice care. When the call comes to make this decision...its going to come quick...so have something in mind already. Keep in mind the "social worker" at the hospital will be a little helpful...but not really...and you will be really frustrated with this. But...start there. And keep an eye out on what insurance will and wont cover.

Third, find the will (if she has one). Read it. Understand how its going to work. Look at her bank accounts and know who is a Payment on Death beneficiary. (Ie who gets her cash upon death). This can be different from the will. Same with any 401(k) or Investment Accounts. Find out what her understanding of all of this is. It may be different from the documents.

All of this is going to feel premature. But it isn't. Its going to feel like you are giving up. You aren't. You want to be able to do this while your mother is still sharp and with you. It will save you alot of headache in the long run. But more importantly than that, it will free you up to spend the remaining days with her not getting bogged down in any of that, but instead optimzing your quality of time with her. Speaking of good things. Of life and love. Not messing with the stuff.

Please feel free to DM me. I know exactly what you are going through.

Hey man, all great points. A lot of this we did some time ago.

Luckily she doesn't need palliative care right now, though that was indeed the thought for a bit not too long ago. They had meetings with us daily during her second hospital stint. Thankfully since they have figured out what was causing such severe issues, our potential need for them has been sorted and shelved. They explained all the options and what they do to us, sugar coating it of course, so I am fairly familiar with what they do now and know in time, it will be needed again.

Thankfully my mom and I have had a lot of the conversations ^, though not everything is sorted fully, we do still talk about it regularly and try to get stuff done. It's all tough, as you seem to have first hand knowledge of. The whole situation sucks, but I do know it is realities she had to address and figure out and she has worked towards doing so over the last year.

Thank you again, and I will certainly reach out via DM at some point I am nearly sure of it! I am sorry you know this feeling as well, but I am glad you are still here and found a way to move forward! Gives me hope for the coming days.
 

Monkfish877

Member
Your mother sounds like a true warrior and she is lucky to have such a caring and loving son as you. I pray that God blesses her with a full recovery but always remember 'We all belong to God, and to him we shall all return'.
 
Hoping for the best with the situation OP, but stories like this always make me nervous. A part of me wishes the Last Judgement would come already so I don't have to deal with checking out.
 

John Marston

GAF's very own treasure goblin
The words "brave" & "courage" get thrown out so much nowadays they have lost their true meaning.

Your mom and your family represent the million of us who have faced adversity and just bear down with it with dignity & hope.

Thank you ❤️
 

0neAnd0nly

Gold Member
Well.

Nothing comes easy these days, it feels.

My mom has been mostly stable at home, as I eluded to prior. She continues to have a multitude of appointments, one of which was a dermatological appointment today. She had a few spots pop up on her head and stomach when she got home from the hospital. They haven’t gone away, and her CMML oncologist quickly made her a dermatologist appointment.

Today, they biopsied them. The doctor is pretty sure it is the cancer spreading again. This one could ever be her breast cancer from almost a decade ago, coming back and causing problems. We will know more when the results come in.

I am currently laying next to her in the AIC ward while she gets another blood transfusions. As a man, it’s tough to admit - but I am crying here, while I type on GAF and hold her hand as she sleeps while the blood donation is doing its job.

It’s tough, GAF. It really is.

I don’t sleep anymore, and I don’t know how to handle a lot of what I have coming up.

Hug your loved ones.
 
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Monkfish877

Member
Well.

Nothing comes easy these days, it feels.

My mom has been mostly stable at home, as I eluded to prior. She continues to have a multitude of appointments, one of which was a dermatological appointment today. She had a few spots pop up on her head and stomach when she got home from the hospital. They haven’t gone away, and her CMML oncologist quickly made her a dermatologist appointment.

Today, they biopsied them. The doctor is pretty sure it is the cancer spreading again. This one could ever be her breast cancer from almost a decade ago, coming back and causing problems. We will know more when the results come in.

I am currently laying next to her in the AIC ward while she gets another blood transfusions. As a man, it’s tough to admit - but I am crying here, while I type on GAF and hold her hand as she sleeps while the blood donation is doing its job.

It’s tough, GAF. It really is.

I don’t sleep anymore, and I don’t know how to handle a lot of what I have coming up.

Hug your loved ones.
Stay strong.
 

0neAnd0nly

Gold Member
Prayers lifted my mom up so high through these years, and I thank you all so much for them.

Today, at 3:45 PM, my mom took her last breath on this earth. I was there with her, holding her hand.

I am so incredibly uncertain about the future, I don’t feel like typing much. It was unexpected and sudden, as she had been doing so much better.

God bless GAF. Hug your loved ones, please. My mom was my hero, and will love as a legend for me. I am going to take a vacation for a little bit… so much of my life is in disarray right now.

And just to end this post, SHE FOUGHT TO THE VERY LAST SECOND. Never, ever, give up.
 

DeafTourette

Perpetually Offended
Prayers lifted my mom up so high through these years, and I thank you all so much for them.

Today, at 3:45 PM, my mom took her last breath on this earth. I was there with her, holding her hand.

I am so incredibly uncertain about the future, I don’t feel like typing much. It was unexpected and sudden, as she had been doing so much better.

God bless GAF. Hug your loved ones, please. My mom was my hero, and will love as a legend for me. I am going to take a vacation for a little bit… so much of my life is in disarray right now.

And just to end this post, SHE FOUGHT TO THE VERY LAST SECOND. Never, ever, give up.

I'm only now seeing this thread. I was prepared to pray for your mom but this is not the end. She will live on in your memories and heart! *hugs* brother!
 

DKehoe

Gold Member
Prayers lifted my mom up so high through these years, and I thank you all so much for them.

Today, at 3:45 PM, my mom took her last breath on this earth. I was there with her, holding her hand.

I am so incredibly uncertain about the future, I don’t feel like typing much. It was unexpected and sudden, as she had been doing so much better.

God bless GAF. Hug your loved ones, please. My mom was my hero, and will love as a legend for me. I am going to take a vacation for a little bit… so much of my life is in disarray right now.

And just to end this post, SHE FOUGHT TO THE VERY LAST SECOND. Never, ever, give up.
Sorry for your loss. I lost my Dad a few years ago so I know how tough it can be. I remember you starting this thread and I have been following your updates as you posted them and keeping you, your mum and your family in my thoughts. I know this doesn't fix anything but I'm glad the two of you were able to spend a good amount of quality time together between that first post and her passing. Sounds like the two of you were very lucky to have each other.
 

Aesius

Member
Prayers lifted my mom up so high through these years, and I thank you all so much for them.

Today, at 3:45 PM, my mom took her last breath on this earth. I was there with her, holding her hand.

I am so incredibly uncertain about the future, I don’t feel like typing much. It was unexpected and sudden, as she had been doing so much better.

God bless GAF. Hug your loved ones, please. My mom was my hero, and will love as a legend for me. I am going to take a vacation for a little bit… so much of my life is in disarray right now.

And just to end this post, SHE FOUGHT TO THE VERY LAST SECOND. Never, ever, give up.
I'm so sorry. I lost my dad in Sept. 2020. It gets better, but it's going to be rough for a while. Be the person your mom wanted you to be, and don't stop trying to make her proud.
 

0neAnd0nly

Gold Member
One last thing before I log off for a bit.

I am glad I was in the hospital there to hold her hand. It was tough, but I know she knew I was with her.

Don’t pass up the opportunity to be with your loved ones in their moments of need, no matter how hard it may be or scary it may seem. I hope my mom knows how much I loved her until the very end.

I just mention this as a PSA, because people don’t know if they can handle those moments. Do it for them if you are able to.

I will post a bit more about how everything ended when I feel like I can. Right now isn’t the time… I am struggling a lot.

Thank you all again for every prayer warrior and nice individual on the board. Much love.
 

Sleepwalker

Gold Member
One last thing before I log off for a bit.

I am glad I was in the hospital there to hold her hand. It was tough, but I know she knew I was with her.

Don’t pass up the opportunity to be with your loved ones in their moments of need, no matter how hard it may be or scary it may seem. I hope my mom knows how much I loved her until the very end.

I just mention this as a PSA, because people don’t know if they can handle those moments. Do it for them if you are able to.

I will post a bit more about how everything ended when I feel like I can. Right now isn’t the time… I am struggling a lot.

Thank you all again for every prayer warrior and nice individual on the board. Much love.
Stay strong friend, my condolences.
 

Solarstrike

Member
Just reading this now. I'm sorry for your loss 0neAnd0nly 0neAnd0nly . May her love and strength comfort you now and always. Something I've kept and read every so often after my father and grandmother died. May it comfort you too,




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Monkfish877

Member
One last thing before I log off for a bit.

I am glad I was in the hospital there to hold her hand. It was tough, but I know she knew I was with her.

Don’t pass up the opportunity to be with your loved ones in their moments of need, no matter how hard it may be or scary it may seem. I hope my mom knows how much I loved her until the very end.

I just mention this as a PSA, because people don’t know if they can handle those moments. Do it for them if you are able to.

I will post a bit more about how everything ended when I feel like I can. Right now isn’t the time… I am struggling a lot.

Thank you all again for every prayer warrior and nice individual on the board. Much love.
Sorry for your loss, my deepest condolences.
 

FunkMiller

Member
Ah mate. My sincerest condolences. The Queen once said grief is the price we pay for love, and I don't think I've ever heard a better summation of what loss means. Stay strong, and surround yourself with people who love you.
 

Slayer-33

Liverpool-2
Just stumbled upon this thread and went through it, my condolences to you and your family. May she RIP. I lost my father last year (June 28th), I'm watching over my mother now, I'm the only son/child. I can't imagine going through what you are going through now.

It's time to mourn man, that's all you can do for a bit, and then some more at different times throught the years, it'll be random. You did all you could and was definitely there for her.

Thanks for taking that time to share all you did with Gaf. We appreciate it.
 
I'm so sorry for your loss. Like the person above me said, thank you for sharing updates and your thoughts. You were a really good son by the sound of it and I know she would be so proud of you. She will watch down on you brother. Rest in peace.
 

22•22

NO PAIN TRANCE CONTINUE
Sorry for the late response 0neAnd0nly 0neAnd0nly .

Words can't describe when reading your story.

I've send your mom, you and your whole family my prayers and wish the best of the best for your mom, you and your whole family in the coming times....

Much Love ❤ 🙌

Sincerely,

22•22 22•22

Edit: I'm so sorry for your loss man.. my deepest condolences....

😪😪😪
 
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