Hey Camul**

GlowMore

Thought you had to have a Scan last Wed too..........did you post about it and I just missed it?

 

 

VickiSam

Miss Carol -- is everything okay .. Scan on

Wednesday??   We are worried about you ...

 

Vicki Sam

camul

VickiSam said:

Miss Carol -- is everything okay .. Scan on

Wednesday??   We are worried about you ...

 

Vicki Sam

i get results Monday.
Somehow they blocked my ability to see scans online. Saw my endogrinologist Friday. She changed up the way I take thyroidd meds. Zsaid I have auto-immune thyroid disorder. So some of the exhaustion and pain could be that. My throid was rmvd in 2009 for tumors they were abnormal but not yet cancdr. She said with all my vit levels off, iI am hypothyroid again, vit b12 off, vit d low. Sso I am now doing sublingual vit b12 daily rather than weekly, 800 of magnesium, and doubled up my thyroid meds.. So in a month if my throid is balanced again, than whatever pain and numbness left would be from the cancer. Still need bladder ck.
Then Monday will see what bones and organs look like.
At least I feel like they are finding pieces to the puzzle. Hopefully the pain will decrease. Went with friends yeesterday to a small art show. Got hom about 3 hrs after I left and slept the rest of the day/night. Exhaustion is almost as hard as the pain.
Am determined meds will balance and so will pain
Hugs,
Carol

New Flower

camul said:

i get results Monday.
Somehow they blocked my ability to see scans online. Saw my endogrinologist Friday. She changed up the way I take thyroidd meds. Zsaid I have auto-immune thyroid disorder. So some of the exhaustion and pain could be that. My throid was rmvd in 2009 for tumors they were abnormal but not yet cancdr. She said with all my vit levels off, iI am hypothyroid again, vit b12 off, vit d low. Sso I am now doing sublingual vit b12 daily rather than weekly, 800 of magnesium, and doubled up my thyroid meds.. So in a month if my throid is balanced again, than whatever pain and numbness left would be from the cancer. Still need bladder ck.
Then Monday will see what bones and organs look like.
At least I feel like they are finding pieces to the puzzle. Hopefully the pain will decrease. Went with friends yeesterday to a small art show. Got hom about 3 hrs after I left and slept the rest of the day/night. Exhaustion is almost as hard as the pain.
Am determined meds will balance and so will pain
Hugs,
Carol

Thanks for update

Hopefully you will feel better soon . Sending positive thoughts for good scans results

GlowMore

camul said:

i get results Monday.
Somehow they blocked my ability to see scans online. Saw my endogrinologist Friday. She changed up the way I take thyroidd meds. Zsaid I have auto-immune thyroid disorder. So some of the exhaustion and pain could be that. My throid was rmvd in 2009 for tumors they were abnormal but not yet cancdr. She said with all my vit levels off, iI am hypothyroid again, vit b12 off, vit d low. Sso I am now doing sublingual vit b12 daily rather than weekly, 800 of magnesium, and doubled up my thyroid meds.. So in a month if my throid is balanced again, than whatever pain and numbness left would be from the cancer. Still need bladder ck.
Then Monday will see what bones and organs look like.
At least I feel like they are finding pieces to the puzzle. Hopefully the pain will decrease. Went with friends yeesterday to a small art show. Got hom about 3 hrs after I left and slept the rest of the day/night. Exhaustion is almost as hard as the pain.
Am determined meds will balance and so will pain
Hugs,
Carol

OK

Thanks for letting us know what's happening with you. Going out to that Art Show for three hours is awesome really when you stop to think about it....even if you DID have to sleep the rest of the day....by golly you WENT ....   Keep that Determination going girl.......put the pain in a triangle and hang it up in the air.......(when you can)  ....I remember that terrible exhaustion where you just can't lift your arm hardly....like a truck on your shoulders....so when that hits you...you must sleep..........  We send you hugs and prayers.......... and LOVE  ** 

camul

GlowMore said:

OK

Thanks for letting us know what's happening with you. Going out to that Art Show for three hours is awesome really when you stop to think about it....even if you DID have to sleep the rest of the day....by golly you WENT ....   Keep that Determination going girl.......put the pain in a triangle and hang it up in the air.......(when you can)  ....I remember that terrible exhaustion where you just can't lift your arm hardly....like a truck on your shoulders....so when that hits you...you must sleep..........  We send you hugs and prayers.......... and LOVE  ** 

Thanks.
I was waiting til I knew more, and formed a list of questions. My endocrinologist made a suggestion to chg to an onco that will work as a team with her, the pain dr. and the group that monitors my blood thinners. The one she suggested, I have seen on occasionn and I would in a minute if he didnt share the sateite office with orig. longterm onco who I left in Dec. when he again said there was nothing he could do for me, other than hospice. That I had to get out of denial and accept the fact that I am terminal!
His nurse said to go to that one too, but that would have been really awkward.
There was an exchange btwn the 2 shortly b4 that bcuz one of his patients saw the new one while my onco was on vaca, and kept making his appts. with him.
That is why I am at the big cancer center here now, but he is out of network so my ins wont pay anything on the balance after medicafe a/b.
Endo thinks I should find one who is in network, will work with pain dr, blood group (clots), rads onco. She said zhe will do the test every month and manage clots, She says I have a good onco, his network doesnt worknwith my secondary so even getting scans, had them at a hospital in network, but the cancer center wants cd w/scans and wants their radiologist to read them. I told him my secondary wont cover. It was like oh well.
So I am going to ask for her opinion on one that will keep me on Aromason and has the respect of my doctors. I am in kind of a pickled mess.
Laughing. I dont remember medical being so hard!
Best thing is I still do have a pretty good sense of humor!!

VickiSam

camul said:

Thanks.
I was waiting til I knew more, and formed a list of questions. My endocrinologist made a suggestion to chg to an onco that will work as a team with her, the pain dr. and the group that monitors my blood thinners. The one she suggested, I have seen on occasionn and I would in a minute if he didnt share the sateite office with orig. longterm onco who I left in Dec. when he again said there was nothing he could do for me, other than hospice. That I had to get out of denial and accept the fact that I am terminal!
His nurse said to go to that one too, but that would have been really awkward.
There was an exchange btwn the 2 shortly b4 that bcuz one of his patients saw the new one while my onco was on vaca, and kept making his appts. with him.
That is why I am at the big cancer center here now, but he is out of network so my ins wont pay anything on the balance after medicafe a/b.
Endo thinks I should find one who is in network, will work with pain dr, blood group (clots), rads onco. She said zhe will do the test every month and manage clots, She says I have a good onco, his network doesnt worknwith my secondary so even getting scans, had them at a hospital in network, but the cancer center wants cd w/scans and wants their radiologist to read them. I told him my secondary wont cover. It was like oh well.
So I am going to ask for her opinion on one that will keep me on Aromason and has the respect of my doctors. I am in kind of a pickled mess.
Laughing. I dont remember medical being so hard!
Best thing is I still do have a pretty good sense of humor!!

Carol - Thank you for the update --

F I N A L L Y,  some of the pieces of your health puzzle coming together, and providing needed answers --

Thinking of you, and praying all goes well today at your doctors office.

 

Vicki Sam

tufi000

camul said:

Thanks.
I was waiting til I knew more, and formed a list of questions. My endocrinologist made a suggestion to chg to an onco that will work as a team with her, the pain dr. and the group that monitors my blood thinners. The one she suggested, I have seen on occasionn and I would in a minute if he didnt share the sateite office with orig. longterm onco who I left in Dec. when he again said there was nothing he could do for me, other than hospice. That I had to get out of denial and accept the fact that I am terminal!
His nurse said to go to that one too, but that would have been really awkward.
There was an exchange btwn the 2 shortly b4 that bcuz one of his patients saw the new one while my onco was on vaca, and kept making his appts. with him.
That is why I am at the big cancer center here now, but he is out of network so my ins wont pay anything on the balance after medicafe a/b.
Endo thinks I should find one who is in network, will work with pain dr, blood group (clots), rads onco. She said zhe will do the test every month and manage clots, She says I have a good onco, his network doesnt worknwith my secondary so even getting scans, had them at a hospital in network, but the cancer center wants cd w/scans and wants their radiologist to read them. I told him my secondary wont cover. It was like oh well.
So I am going to ask for her opinion on one that will keep me on Aromason and has the respect of my doctors. I am in kind of a pickled mess.
Laughing. I dont remember medical being so hard!
Best thing is I still do have a pretty good sense of humor!!

yaaaa

Sounds like you got handle on it girl.  Humor is a real lifesaver.  Still trying to find mine again too.  Get out your diplomatic skills id you have any too!