Cancer Support and Caregivers Who Are Trail Blazers!

[JustJo]

Hello all,

It's been awhile since I've posted about mom, but not much has changed. We're in a holding pattern of sorts. She is still doing the (supposedly reduced) chemo, but is finding that it makes her just as sick. The oncologist and surgeon disagree about whether she should continue it or not...and she is leaning towards not.

Basically, she feels fine when not on chemo...very sick when on it...and no one knows whether chemo actually will slow the advance of these punctate lesions or not. In a nutshell...her choice...does she want to feel nauseous and exhausted and take a potential chance at increased time....or feel like herself and take a potential chance at reduced time.

All she knows for sure right now is that she really wants to be home on her own place. I understand that, as it's always been her closest connection and the most important thing in her life. With the mild winter, weather isn't the issue we had anticipated...and she's eating and drinking well, not to mention infinitely stronger and healthier than when she arrived in early December. So....she's going home, a week from Saturday. She'll still have visiting nurse and home health aid a couple times a week, and her best friend will by my spy. We have agreed that if she starts to deteriorate at all, or by next winter at least, she will come back here to Florida again.

Honestly, I'm relieved. The stress of being a caregiver is enormous, exhausting and difficult...even if the previous relationship is good. When the previous relationship is rocky, and the recipient of care is a narcissist....well....suffice to say that I can use the break myself.

I also struggle....so many people want to tell me that I'm a good daughter, or so compassionate and giving, or so brave....and I'm not. Believe me....I'm here to tell you. I am doing this because I must....because I have to live with myself and look in the mirror each day for the rest of my life. I joke about "damn ethics"....but that's what it is....the recognition that the right thing needs to be done even if I hate doing it, even if it exhausts me, and even as I grit my teeth and bite my tongue.

I'm never had cancer myself, but I can only imagine that it is the same for many cancer patients....who get through it one step at a time simply because they must.

Hugs,
Jo

[DapperButch]

Jo, thanks for updating us on your mom. It sounds like her being down here was a very, very good thing for her. It really stabilized her and that is great. It does sound like she really is at a crossroads in terms of her decision. It would be a tough call.

Originally Posted by JustJo

I also struggle....so many people want to tell me that I'm a good daughter, or so compassionate and giving, or so brave....and I'm not. Believe me....I'm here to tell you. I am doing this because I must....because I have to live with myself and look in the mirror each day for the rest of my life. I joke about "damn ethics"....but that's what it is....the recognition that the right thing needs to be done even if I hate doing it, even if it exhausts me, and even as I grit my teeth and bite my tongue.

I'm never had cancer myself, but I can only imagine that it is the same for many cancer patients....who get through it one step at a time simply because they must.

Hugs,
Jo

I know exactly what you mean with the whole "brave" part not fitting for you. I actually was going to respond to Clay's post last night <waving at Clay> to tell her that I would prefer she refrain from calling me a "brave warrior". That isn't how I identify. I am just a guy who got cancer and didn't want to die so hy got treatment. Being called a "brave warrior" makes me quite uncomfortable.

So, Clay, I support you in calling yourself whatever, including brave warrior, if that is how you identify, but I am just a guy who did what had to be done. Please stop calling me something I do not identify with, however, please know I appreciate the sentiment. Thanks.

[JustJo]

Hello all,

Probably time for another update, but please skip this one if you don't want to hear bad news.

We just got the results of my mother's last PET scan and the cancer has metastisized (or however you spell that freakin word) to her liver. They are calling it hyper-metabolic....which basically means growing like a son of a bitch.

Also, several of the punctate lesions have now activated on the outside of her remaining small intestine.

They have said they are "willing to try" very aggressive chemo....but the mild chemo she is on is already making her more sick than she can tolerate, and her weight is already dropping again. The only time she felt well, and was gaining weight, is when she had a break from chemo....so she expects that the very aggressive version would be absolutely intolerable for her.

She has decided to return home as planned on Saturday, to refuse chemo, and to begin working with hospice. She would prefer to live a shorter time, and not feel so sick...and most definitely not to die either in a hospital, or in front of my son.

She has already started getting her affairs in order.

Cancer sucks.

[clay]

Originally Posted by JustJo

Hello all,

Probably time for another update, but please skip this one if you don't want to hear bad news.

We just got the results of my mother's last PET scan and the cancer has metastisized (or however you spell that freakin word) to her liver. They are calling it hyper-metabolic....which basically means growing like a son of a bitch.

Also, several of the punctate lesions have now activated on the outside of her remaining small intestine.

They have said they are "willing to try" very aggressive chemo....but the mild chemo she is on is already making her more sick than she can tolerate, and her weight is already dropping again. The only time she felt well, and was gaining weight, is when she had a break from chemo....so she expects that the very aggressive version would be absolutely intolerable for her.

She has decided to return home as planned on Saturday, to refuse chemo, and to begin working with hospice. She would prefer to live a shorter time, and not feel so sick...and most definitely not to die either in a hospital, or in front of my son.

She has already started getting her affairs in order.

Cancer sucks.

aww Jo.....BIG HUGS to you and mom!!! She is in my heart & thoughts...as are you!!! Love you, Mom!!!

[DapperButch]

Oh, gosh, Jo. I am so very, very sorry. I don't even know what you say. Please know I am here if you want to talk.

[Tommi]

Originally Posted by JustJo

Hello all,

Probably time for another update, but please skip this one if you don't want to hear bad news.

We just got the results of my mother's last PET scan and the cancer has metastisized (or however you spell that freakin word) to her liver. They are calling it hyper-metabolic....which basically means growing like a son of a bitch.

Also, several of the punctate lesions have now activated on the outside of her remaining small intestine.

They have said they are "willing to try" very aggressive chemo....but the mild chemo she is on is already making her more sick than she can tolerate, and her weight is already dropping again. The only time she felt well, and was gaining weight, is when she had a break from chemo....so she expects that the very aggressive version would be absolutely intolerable for her.

She has decided to return home as planned on Saturday, to refuse chemo, and to begin working with hospice. She would prefer to live a shorter time, and not feel so sick...and most definitely not to die either in a hospital, or in front of my son.

She has already started getting her affairs in order.

Cancer sucks.

(((((((((((((Jo's Mom))))))))))))))

[mustangjeano]

Originally Posted by JustJo

Hello all,

Probably time for another update, but please skip this one if you don't want to hear bad news.

We just got the results of my mother's last PET scan and the cancer has metastisized (or however you spell that freakin word) to her liver. They are calling it hyper-metabolic....which basically means growing like a son of a bitch.

Also, several of the punctate lesions have now activated on the outside of her remaining small intestine.

They have said they are "willing to try" very aggressive chemo....but the mild chemo she is on is already making her more sick than she can tolerate, and her weight is already dropping again. The only time she felt well, and was gaining weight, is when she had a break from chemo....so she expects that the very aggressive version would be absolutely intolerable for her.

She has decided to return home as planned on Saturday, to refuse chemo, and to begin working with hospice. She would prefer to live a shorter time, and not feel so sick...and most definitely not to die either in a hospital, or in front of my son.

She has already started getting her affairs in order.

Cancer sucks.

Oh damn Jo, I'm so sorry. I can't think of anything helpful to say other than I will keep you and your Mom in my prayers. We are all here for you.

[SweetJane]

JustJo, this is always hard news. But it looks like your mom realizes that quality of life is important to her and those around her. We will keep her in prayer...and you as well.

[OS Butch]

Good morning. I just had the scare of my life and thought I would share it here. Sorry for the long ramble.


Since the age of 40, I have gone every year for a mammogram. It had become routine, something I just did.


10 years ago, my oldest sister was diagnosed with breast cancer; she did the chemo and mastectomy and is a 10 year survivor and going strong.


Last year my youngest sister was diagnosed with breast cancer and is doing well.



Having done this 13 times and having some not so very sensitive technicians, last year I said to the tech “Good morning, are you having a good day?” She looked at me a bit puzzled and said yes. I said “Great, because the last thing I want is someone squishing my boob that is having a bad day!” She laughed and although uncomfortable, it went well.


Last week I went for my routine mammogram. I had the same conversion with the tech and again, it went well. My daughter had come by Monday to pick up her mail and it was a good day. Later that evening, I got a call from her telling me she got my letter from the radiologist. As she read it I stopped hearing a word she was saying after I heard “requiring more testing.” I cried myself to sleep that night.


Tuesday, yes, Valentine’s day, I called my doctor and instructed to call the radiologist for another appointment, I shouldn’t need another prescription. I called the center and was told the next date would be Feb 29…..That was 15 days away! I said to the lady, I have had 2 sisters with breast cancer and that seems too long can they call me if there is a cancellation and get in sooner? She said she is unable to do that, but she could transfer me to the local office and I could check with them.


She transferred me to the actual place I had my testing. I gave my name and other information. She said “Can you come in at 1pm today?” My heart just about stopped as I said yes. Even though I got an early time, the immediate response was of urgency it seemed and I was terrified.


I arrived early to the center, and waited to be called. I heard my name and through those doors I went. I had my little conversation with the tech and she laughed. She took 1 x-ray of my right breast and 3 of the left. She took me to a waiting room, still in the gown in case there needed to be more x-rays after the doctor read them. As I sat in the waiting room, there was a tv playing an infomercial on Tomosynthesis 3D imaging. After what seemed forever, the tech came and got me for another x-ray….omgoodness. I asked about the Tomo and she said that is what we are doing. She further explained that it is a new technology and insurance companies are not paying for it yet, but the Doctor here said to go ahead and do it.



Back to the room I went and waited. The tech finally came back and said I could get dressed and the doctor would be in to talk to me……..more waiting.


Finally he arrived and said that everything was fine and negative. Shadows of the 2d were not there on the 3d. A huge sigh of relief!


I suggest that if the new Tomosynthesis 3D imaging is available in your area, it is well worth the out of pocket expensive to alleviate false positive reading and going through what I experienced! Hopefully, the insurance companies will start covering this new machine…. it still squishes the boob, but it takes 52 shots in a pass so the doctor is able to see more!


OSB

[Countyfem]

Sending everyone well wishes

JustJo so sorry for this news my prayers are with you and your family

OS glad to hear your news was good, adding you and your family to my prayers

Clay I have a feeling everything will be good for you, you beat it once and if need be you can do it again!

Take care everyone keep your spirits high and know there are folks that keep you in their thoughts and prayers and support you.

[DapperButch]

Originally Posted by OS Butch

Good morning. I just had the scare of my life and thought I would share it here. Sorry for the long ramble.


Since the age of 40, I have gone every year for a mammogram. It had become routine, something I just did.


10 years ago, my oldest sister was diagnosed with breast cancer; she did the chemo and mastectomy and is a 10 year survivor and going strong.


Last year my youngest sister was diagnosed with breast cancer and is doing well.



Having done this 13 times and having some not so very sensitive technicians, last year I said to the tech “Good morning, are you having a good day?” She looked at me a bit puzzled and said yes. I said “Great, because the last thing I want is someone squishing my boob that is having a bad day!” She laughed and although uncomfortable, it went well.


Last week I went for my routine mammogram. I had the same conversion with the tech and again, it went well. My daughter had come by Monday to pick up her mail and it was a good day. Later that evening, I got a call from her telling me she got my letter from the radiologist. As she read it I stopped hearing a word she was saying after I heard “requiring more testing.” I cried myself to sleep that night.


Tuesday, yes, Valentine’s day, I called my doctor and instructed to call the radiologist for another appointment, I shouldn’t need another prescription. I called the center and was told the next date would be Feb 29…..That was 15 days away! I said to the lady, I have had 2 sisters with breast cancer and that seems too long can they call me if there is a cancellation and get in sooner? She said she is unable to do that, but she could transfer me to the local office and I could check with them.


She transferred me to the actual place I had my testing. I gave my name and other information. She said “Can you come in at 1pm today?” My heart just about stopped as I said yes. Even though I got an early time, the immediate response was of urgency it seemed and I was terrified.


I arrived early to the center, and waited to be called. I heard my name and through those doors I went. I had my little conversation with the tech and she laughed. She took 1 x-ray of my right breast and 3 of the left. She took me to a waiting room, still in the gown in case there needed to be more x-rays after the doctor read them. As I sat in the waiting room, there was a tv playing an infomercial on Tomosynthesis 3D imaging. After what seemed forever, the tech came and got me for another x-ray….omgoodness. I asked about the Tomo and she said that is what we are doing. She further explained that it is a new technology and insurance companies are not paying for it yet, but the Doctor here said to go ahead and do it.



Back to the room I went and waited. The tech finally came back and said I could get dressed and the doctor would be in to talk to me……..more waiting.


Finally he arrived and said that everything was fine and negative. Shadows of the 2d were not there on the 3d. A huge sigh of relief!


I suggest that if the new Tomosynthesis 3D imaging is available in your area, it is well worth the out of pocket expensive to alleviate false positive reading and going through what I experienced! Hopefully, the insurance companies will start covering this new machine…. it still squishes the boob, but it takes 52 shots in a pass so the doctor is able to see more!


OSB

OS,

Thank you for sharing your story with us. I am glad that it had a happy ending! I can see why you would have been so nervous wiht two sisters with breast cancer.