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Old 01-09-2015, 06:09 PM   #3091
luvmarypoppins
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squeegee - so sorry about your results. I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you.

mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist.

singing mom - Are you still on our trip??

macraven - how wonderful that you gave up smoking!!

Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.
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Old 01-09-2015, 11:31 PM   #3092
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Originally Posted by luvmarypoppins View Post
squeegee - so sorry about your results. I'm sure you and your care team will get a good treatment plan in place. My thoughts and prayers are with you. mommasita - sorry you are having to deal with another health issue. I am sure its getting overwhelming at times. But hang in there and its good you are seeing a specialist. singing mom - Are you still on our trip?? macraven - how wonderful that you gave up smoking!! Its just so cold here that I dont want to make the appts. My bones really dont like the cold. They get all stiff and getting in and out of the car and walking is not fun.
Yes! In the middle of our trip. Weather has been terribly cold. I'm not complaining in the fact that it is BITTER cold back home, but I really wish I had packed a warner sweatshirt. We are layering, but I had a bad chill today due to the sun not being out like yesterday. Hoping that tomorrow starts the warm swing! We had a great time today visiting with our ABD guide from Germany! We were super lucky that her trip overlapped with ours. So wonderful to spend time with her & her friend today. Tomorrow my friend who lives here is picking us up to go to mass at the basilica, then we'll go to dinner. Dd & DH are going back to AK tomorrow, but I might stay at the resort to relax & soak in the hot tub if the weather cooperates! Lol. We have lots more planned for the next six days!
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Old 01-10-2015, 12:58 AM   #3093
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Thank you ladies

My Doctor actually wasn't in today... We have had some horrendous weather.. Ice storm this week, snowwwwwwwwwww and some extreme cold, even for us...

I think the worst (aside from the weight, as I expected some, not 50) things are the hair loss and the mood swings.. I always was very evenly tempered, and it is almost like I have this PMS out of nowhere all the time. I hate it, I hate myself, and I have no control.... I apologize to my husband and kids, but It really isn't who I am, and I don't like myself, if that makes sense.

My husband decided to take it upon himself to book a holiday.. He says that we need a break.. This is our 20th year of marriage, and we are leaving next Sunday on a cruise... I have a week to get things prepared, and it is for 12 days.. I have never left both kids.. THey are nearly 16 and 19, so they will be ok.. It is more the grocery purchasing and so on.. I think the break will honestly do so much good, he is right.. This week I have an internal ultrasound (the real word will get blocked) and my Rheumy appt, and then he says I can take the 12 days off, and see the ENdo when I get back... With the -35 temps, I can't say I mind..

I will speak to my Doctor Monday and get in to see him before my Rheumy to get the copy of the second set of bloods for the comparison...

I thank you again.. It is deeply appreciated..
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Old 01-10-2015, 01:11 AM   #3094
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momma, sometimes a wonderful trip like Mr Momma plans for you will make a world of difference.

you'll be relax and just enjoy the sites and be together.


make your trip be as free as a bird.


deal with what could happen after you return from this lovely special get away together.
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Old 01-16-2015, 06:51 PM   #3095
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Met my surgeon today, and got the results of the CT.

Good news is that there were no surprises on the CT. The only real findings there were the expected nodes in my neck, in the left. There was an incidental finding of some mild degenerative changes in my spine, but am not worried there.

Surgery, a modified radical left neck dissection, is scheduled for Monday the 26th. He expects 1-2 days in the hospital, and didn't specify how much time off work - that's something I forgot to ask about. I figure 2-3 weeks, but I see my endo to begin radiation on March 6th, so asked if I can just have the FMLA paperwork keep me "off" until then. Will see.

As for the radiation, the surgeon said there was some test they'll run on the removed tissue to see if it's iodine-avid. He gave me the name, but I can't remember it. Anyone heard of it?

If it's iodine-avid, I'll just go through the regular I131, but if it's not, that opens a whole 'bother can of worms. Will cross that bridge when I get to it, I suppose.

Spent most of the day getting the pre-op bloodwork, chest X-ray, and EKG out of the way. Am lucky to be based in a hospital for my work, so was able to get most of it done there this afternoon.

And now, all that's left is to wait for Monday the 26th.
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Old 01-16-2015, 07:56 PM   #3096
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squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again.

One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first.

I dont know about that test but I am glad they have it. It will answer alot of questions for you.

Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study.

My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too.

You are a fighter and you can do this!! Prayers for you
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Old 01-16-2015, 08:12 PM   #3097
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Originally Posted by luvmarypoppins View Post
squeegee - glad you are getting the show on the road so to speak but so sorry you have to go through all of this again. One of our posters had to get the rai twice I think because her one scan was not clean. She hasnt posted lately, but I am sure she will have some good advice. I do remember the second time she did thyrogen versus withdrawl and of course the lid first. I dont know about that test but I am glad they have it. It will answer alot of questions for you. Just curious what your rai dose was first time. Mine was 200 , the max. But mine already spread to 2 tumors and lymph nodes. Also did you do the lid and withdrawl or thyrogen. I always ask everyone who posts for my own little unscientific study. My onc. and surgeon told me that sometimes they use alcohol ablation on non avid and they save external beam in their arsenal for later too. You are a fighter and you can do this!! Prayers for you
I had 150 of the rai last time, after withdrawal and lid. The original tumor was only in the left lobe and 4/5 lymph nodes.

I've heard if the alcohol ablation thing, but if surgery gets all the nodes physically out, am not sure what they'd inject?

Thank you for the encouragement and well-wishes. Will do my best to keep everyone updated as things go on.
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Old 01-19-2015, 08:05 PM   #3098
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Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS!

I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.
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Old 01-20-2015, 06:38 AM   #3099
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Hi!!! I'm still alive! My little guy is almost a year old and leaves almost no time for the DIS! I haven't caught up with reading everything, but with my radical neck dissection I had a 23.5 hour hospital stay (insurance thing, less than a day) and was off work for a month. I could have worked sooner, but I couldn't drive myself there because I couldn't turn my head/didn't have full range of motion.
My little girl is almost four now and still doesn't leave me much time for posting. LOL.

With my little girl at home, I've requested a longer stay inpatient. She has been a "high needs" child from day 1, and I don't fancy the idea of going home with a drain in my neck - an "accident" while she's glommed onto me is almost guaranteed. Have already been trying to prepare her for the fact that she won't be able to climb all over me and hug for a little bit, that I won't be able to pick her up. She's going to have to be gentle with mommy, and sometimes sit next to me instead of on me. LOL.

I figure a month or so for the surgery recovery sounds about right, especially with regards to driving. I remember turning my neck with the TT was bad enough.
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Old 01-23-2015, 06:26 PM   #3100
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squeegee - wishing you all the best on Mon. Sending you my prayers and good thoughts. Hoping everything goes smoothly and hopefully not too much pain.

Angie - thinking of you too and hope your rads are going as good as can be. You can do this! You have so much strength and courage. Hang in there!

Micayla - I am glad you stopped in. Come by more if you can, but with your little guy I am sure he is your top priority and keeping the mommy you very busy!

singing mom - we need a trip update

macraven - would love to hear about your trip too

Christine - saw yur comments on the guinea pig thread! We used to have a long haired litte guy. It was a chore to get my kids to clean the cage. But he loved talking to me and of course I always gave him lots of treats. As soon as we opened the refrig. door he would go crazy! Are you reading anything good? I am actually reading two books right now but I dont know if I will do that again. I want to keep them straight. One is an amish fiction christmas story and the other I won from goodreads - an arc of a historical fiction. Its good so far.

Next month I have my endo visit, so blood test in a few weeks not to mention the procrastinating bone scan I need to schedule.

And in other news, I am going to give this one a because ds3 got the nursing job he applied for. Its in the worst hospital around here, but he is still thrilled. He is going to be on med/surg telemetry unit. He is doing full time days 3 days a week 7am to 7pm. So he is happy with that. His one friend from nursing school might be on the same unit or at least the same floor so he is double happy. He said she is engaged and a nice girl. Hope they can work as a good team together.

Check in when you all can. Thinking of you all.
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Old 01-25-2015, 07:45 AM   #3101
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Quote:
Originally Posted by luvmarypoppins View Post
squeegee - wishing you all the best on Mon. Sending you my prayers and good thoughts. Hoping everything goes smoothly and hopefully not too much pain.

Angie - thinking of you too and hope your rads are going as good as can be. You can do this! You have so much strength and courage. Hang in there!

Micayla - I am glad you stopped in. Come by more if you can, but with your little guy I am sure he is your top priority and keeping the mommy you very busy!

singing mom - we need a trip update

macraven - would love to hear about your trip too

Christine - saw yur comments on the guinea pig thread! We used to have a long haired litte guy. It was a chore to get my kids to clean the cage. But he loved talking to me and of course I always gave him lots of treats. As soon as we opened the refrig. door he would go crazy! Are you reading anything good? I am actually reading two books right now but I dont know if I will do that again. I want to keep them straight. One is an amish fiction christmas story and the other I won from goodreads - an arc of a historical fiction. Its good so far.

Next month I have my endo visit, so blood test in a few weeks not to mention the procrastinating bone scan I need to schedule.

And in other news, I am going to give this one a because ds3 got the nursing job he applied for. Its in the worst hospital around here, but he is still thrilled. He is going to be on med/surg telemetry unit. He is doing full time days 3 days a week 7am to 7pm. So he is happy with that. His one friend from nursing school might be on the same unit or at least the same floor so he is double happy. He said she is engaged and a nice girl. Hope they can work as a good team together.

Check in when you all can. Thinking of you all.

luvmarypoppins: congrats to your son. I know you are all thrilled about this. He will get some good experience and then, I'm sure, future jobs will come easier.

I just finished reading a Stephen King book (Revival) that a friend had so it was a "freebie" for me. It was okay. Starting another one that I just got from the library that is more of a crime/thriller thing, but it gets good reviews.

My endo appointment is on February 2, so I've got my usual labs. Not sure if it's time for a neck ultrasound or not. I am very interested to see how my labs are. I've had a ridiculously hard time losing weight over the last 6 months and I *have* lowered my thyroid meds but my TSH is still pretty low even with that so it's probably more of an "old lady" thing. I am 51 now and my hormones are in a definite shift and I think I'm speeding into menopause but not there yet, so that is probably what it is.

In three week we move back into our building at the Navy Yard so that's going to be a big deal for many of us. So many people have some form of PTSD after what happened that I'm not sure all will be able to go back.
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