PET Scan - & Yes I'm Going to Beat This !!!

It is okay to be mad. Be as mad as you want! This sucks!!


I'm think of you a lot during my day.

Quote from SlickChik : It is okay to be mad. Be as mad as you want! This sucks!! I'm think of you a lot during my day.

with both!

Quote from SlickChik : It is okay to be mad. Be as mad as you want! This sucks!! I'm think of you a lot during my day.

Thanks SC, I knew at some point the pot was going to boil over, I guess today was the day
I need to get the lid back on it, my son is still here until Friday morning, and I can't look/act angry while he is here. It's tough enough on him as it is, and with him returning home, I can't have him seeing me totally upset over this; so I do need to calm it down a few notches before he comes over again tomorrow. Though he was here when I looked up the meaning of this word, and being a Paramedic, he gets "it" I can't shield him from all of this, but I can give him some hope as well as myself

And yes, this just sucks, no other way to put it

Quote from Piccaboo : Guess it doesn't matter even if I do eat, I'm not gaining any weight due to cachexia, I might was well be eating dirt, for all the good it's doing me It's like I don't even care if I eat the right or wrong things the night before this PET Scan now, why bother with this new development

No one would ever blame you for feeling like this, but please DO NOT take this approach. If there's something to be done down the road, you have to do everything correctly now. How much would it suck if months from now, they could have helped you but the PET scan was fudged and they didn't know it.

And I live in CT, so come on up for the toka party (see what I did there?)

Quote from Piccaboo : I can't shield him from all of this, but I can give him some hope as well as myself (

There is hope!

Quote from Piccaboo : Thanks SC, I knew at some point the pot was going to boil over, I guess today was the day I need to get the lid back on it, my son is still here until Friday morning, and I can't look/act angry while he is here. It's tough enough on him as it is, and with him returning home, I can't have him seeing me totally upset over this; so I do need to calm it down a few notches before he comes over again tomorrow. Though he was here when I looked up the meaning of this word, and being a Paramedic, he gets "it" I can't shield him from all of this, but I can give him some hope as well as myself And yes, this just sucks, no other way to put it

Quote from The Llama : No one would ever blame you for feeling like this, but please DO NOT take this approach. If there's something to be done down the road, you have to do everything correctly now. How much would it suck if months from now, they could have helped you but the PET scan was fudged and they didn't know it. And I live in CT, so come on up for the toka party (see what I did there?)

Quote from The Llama : No one would ever blame you for feeling like this, but please DO NOT take this approach. If there's something to be done down the road, you have to do everything correctly now. How much would it suck if months from now, they could have helped you but the PET scan was fudged and they didn't know it. And I live in CT, so come on up for the toka party (see what I did there?)

I'm not going to fudge the PET Scan test, I do want accurate results, just letting out some frustration at this latest development, didn't expect that at all Still absorbing this, mentally and processing it. There is so much on my plate right now, and this just added to it; and I'm sitting here thinking how do I get past this "one" now.

I/we are NOT giving up hope, we still are banking on Friday's test bringing us a glimmer of hope in all of this mess; there has to be some good news somewhere in all of this, just has to be. It can't be all bad news from every doctor, that's just improbable.

Good morning Picca. Fridays PET will be good news and we are all sill for you! BIG and lots of

Quote from cupcake42 : Good morning Picca. Fridays PET will be good news and we are all sill for you! BIG and lots of

Thanks CC

Friday is the Endoscope, that is the one we are hoping for good news; this test is key tomorrow. Since it's at 11:45 am, and they are putting me under, I'll be groggy when I get home, so no telling when I'll be back on here with info from that test. Probably won't be till much later in the evening, as I'll be sleeping when I get back home.

I just go approved for the PET Scan for Monday, and it is scheduled for 7:45 am, I need to get up really early and begin drinking lots of water, to get that into my system before I go for that test they told me on the phone this morning.

I'm a little more settled with this news, after talking with the doctor's assistant today, about all of this; and discussing how this is affecting my weight loss. She agreed it's playing a major role in this, and how they are going to fix this is really up in the air right now until all these test results come back in. Hard to believe I'm way more than a month into this, and not much has changed, other than wait and see, and see and wait. Plus, getting more bad news on top of more bad news.

I would suppose my attitude stems from caring for other family members, watching what happened with them; knowing doctor's lied to them, and it comes down to quality of life. Had they had the opportunity to "know the truth" ahead of time, while they were healthy enough; they would have been able to go ahead and do some things they truly wanted to do - they were robbed of the opportunity. I'm not about to let that happen to me, no way, no how. I knew the truth about these family members, but it was not my place to tell them, which frustrated the hell out of me, knowing the doctor's were lying to them, and knowing there was so much they could have done if ONLY they were told the truth. Which is why I'm hell bent on being told the truth up front right now. I'll take quality of life, over quantity right now - so my husband and I can make plans to do some things. This is not giving up, this is being diligent about what may be going on; having seen what others have been through. I don't want to be "them" is all. I want to make my own choices in this, not let some doctor's make choices for me; that may not be in my best interest in the long run, if that makes any sense at all to people.

Do not put me through needless operations only to tell me after the fact, that I have 3 months to live, and I'm laying there recuperating and can't do shit. I'd much rather no operations while I still feel up to doing things - and let me go - let us go and live our lives out to the fullest right now - I'd much rather do that - than suffer needlessly - as I've seen other family members do

Make sense to all of you. Not giving up - but I will make my own choices in this, if things really taken a spin for the worst. I believe in quality of life, I believe in going out with gusto, I believe I should live out my dreams while I can. I'm a realist after all. No one promised me a rose garden, nor eternal life, nor a fountain of youth. But I promised myself, I wouldn't allow anyone but myself to make my own decisions when something like this should happen. That is strength in knowing who you are and what you want out of life !!!

Quote from Piccaboo : Thanks CC Friday is the Endoscope, that is the one we are hoping for good news; this test is key tomorrow. Since it's at 11:45 am, and they are putting me under, I'll be groggy when I get home, so no telling when I'll be back on here with info from that test. Probably won't be till much later in the evening, as I'll be sleeping when I get back home. I just go approved for the PET Scan for Monday, and it is scheduled for 7:45 am, I need to get up really early and begin drinking lots of water, to get that into my system before I go for that test they told me on the phone this morning. I'm a little more settled with this news, after talking with the doctor's assistant today, about all of this; and discussing how this is affecting my weight loss. She agreed it's playing a major role in this, and how they are going to fix this is really up in the air right now until all these test results come back in. Hard to believe I'm way more than a month into this, and not much has changed, other than wait and see, and see and wait. Plus, getting more bad news on top of more bad news. I would suppose my attitude stems from caring for other family members, watching what happened with them; knowing doctor's lied to them, and it comes down to quality of life. Had they had the opportunity to "know the truth" ahead of time, while they were healthy enough; they would have been able to go ahead and do some things they truly wanted to do - they were robbed of the opportunity. I'm not about to let that happen to me, no way, no how. I knew the truth about these family members, but it was not my place to tell them, which frustrated the hell out of me, knowing the doctor's were lying to them, and knowing there was so much they could have done if ONLY they were told the truth. Which is why I'm hell bent on being told the truth up front right now. I'll take quality of life, over quantity right now - so my husband and I can make plans to do some things. This is not giving up, this is being diligent about what may be going on; having seen what others have been through. I don't want to be "them" is all. I want to make my own choices in this, not let some doctor's make choices for me; that may not be in my best interest in the long run, if that makes any sense at all to people. Do not put me through needless operations only to tell me after the fact, that I have 3 months to live, and I'm laying there recuperating and can't do shit. I'd much rather no operations while I still feel up to doing things - and let me go - let us go and live our lives out to the fullest right now - I'd much rather do that - than suffer needlessly - as I've seen other family members do Make sense to all of you. Not giving up - but I will make my own choices in this, if things really taken a spin for the worst. I believe in quality of life, I believe in going out with gusto, I believe I should live out my dreams while I can. I'm a realist after all. No one promised me a rose garden, nor eternal life, nor a fountain of youth. But I promised myself, I wouldn't allow anyone but myself to make my own decisions when something like this should happen. That is strength in knowing who you are and what you want out of life !!!

U

Quote from .DC. : U

I'm a tough chica, with some realistic views on quality of life, seen way too much in my life time. Just give me the opportunity is all I ask of these doctor's Let me make the decisions with truth on my side

Now to interpret the MRI Report I just picked up; time for some Net researching

Praying for the best tomorrow and Monday...and beyond.

Thank you MLV

I love having a son who is a Paramedic and knows so much and has so many years clinically in this field, he is a god send to me right now, especially that he is up here with me at this time; soon to head back to where he lives; but I'm able to run this MRI result by him. He is also handling all of this very well, considering he is only 25 years old, and that is quite young still, to have this on his shoulders as well; that part makes me "sad". But with determination, comes strength from within, and I've told him, stay strong; like your Mom is and your Dad

I've know since Monday I also have a condition called "tuberous sclerosis" with this one remaining kidney; yeah, it keeps piling on, I just don't divulge everything at once here; as I process everything. It was mentioned to me at the doctor's, and I was well aware I probably had this condition, no other doctor had actually "pegged me" with it until Monday; although it had been mentioned through the years to me by various doctor's, no one actually wanted to diagnose me with this why, as it was obvious to me from research.

I now understand from this MRI Report what is going on with these two particular "tumors" at the top pole of the kidney. The question has been; did they "convert" from angiomyolipoma's into renal cell carcinoma? Well, indeed they have converted from angiomyoplipoma's which are fatty tissue tumors, into lipid-poor masses; which means they no longer contain "fat" such as an angiomyolipoma tumor would; thus making it more likely for it to be cancerous; but a test like this cannot 100% for sure say that, nor rule that out.

Though it is able to determine that these two tumors have grown in size since 2009, when I previously had issues with them, and indeed their characteristics have changed significantly. As well as one of the tumors is adjacent to my adrenal gland, and the other tumor abuts the posteromedial liver surface, but not in close proximity to any major vessels.

So this tells me, if they do the partial nephrectomy, they will take out that adrenal gland (the last of my endocrine system), as well as the lymph nodes; as my son said to me "Mom" they will need to err on the side of caution here with these tests; and because they are not conclusive - it would be negligent of them not to go with a cancer diagnosis - and then not operate - and allow this to continue - and later on have what happened 26 yrs ago - they won't allow that to occur - this is why they are recommending the partial nephrectomy at this time - in order to ensure they cover their own asses - because they cannot be 100% correct by any of these tests and they cannot do a biopsy on this.

The other cancer is in the lung sitting right above this kidney; since they are so close together; this is why the doctor feels it has "spread". Tomorrow we see if by pictures I just saw with images on the computer, what shows up on the Endoscope - if that shows stomach cancer - indeed that would have spread as well if it is on the right side - from the images I just looked at - it all ties in together in a nice neat little package.

Did you all know that I have known how to spell angiomyolipoma for 26 yrs now - and can spell it to doctor's that can't even spell it themselves Then I say, simply write down "fatty tissue tumor" if that word is too hard for you

Picca - still and still thinks she will pull the "Ace" tomorrow !!!!


P.S. I was diagnosed with this originally when I was 30 yrs old - it was not something a 30 yr old normally gets - and they originally diagnosed me as a "depressed housewife" when I had a baby barely 2 mths old - and I had a softball size tumor on my kidney at the time - they mis-diagnosed me, not once, but twice, before they got it correct They almost killed me in the process - now you don't have to wonder why I'm so hard headed about my medical care. I've fought for myself ever since that happened