The THYROID Thread

[SingingMom]

macraven,



As to the whole kids thing--my kids are still sort of dependent on me so I do see them enough, but I know that time is running out...my son is home for the summer but when he is at school or when things are going well for him, I don't hear from him. I try to take that as a good thing, but it's still odd that you can go through all that intense parenting and then, poof, they are gone. My daughter lives in the city but we work in the same field now so I do get to see her for lunch occasionally. I saw her a LOT when the boyfriend was out of town but he's back now. I think the both of them are coming today to do the "obligational" mother's day visit of which I'm fine if they don't.

Now, my own mother (and father) live a few minutes from me but I can go WEEKS without seeing them. Sometimes I feel bad about that, but on the other hand, both my parents are very active (my mother still works part time at 73) and they do stuff. She also knows what it's like to work full time so she doesn't ever place a lot of demands on me for time. But, yeah, I think I could do better.

 

[luvmarypoppins]

macraven - how are you feeling today? Hoping the pain is bearable even though I am sure its driving you crazy. Prayers for you! I know you mentioned reading. Do you have any favorite authors? I like lots of different genres of the christian books just not the edwardian type stuff. I find that usually boring except for one author of that.

I am getting my disney fix by watching Monsters Univ. on tv right now lol. It was a dreary gray rainy day here. Even the weather guy said like its rains every week end. sigh. Well I got a survey about the endo. Let me tell you I gave her top marks for everything and said all the doctors need to be like her and she is an asset to the hospital. Good let them read that one. I also got a survey about the outpatient testing. I an not sure which one they meant as I was in two places and they didnt specify a date but the guy I had did both tests and he was really nice too.

And speaking of books..one author was running a facebook contest and she asked us to comment on what our summer plans were. I said resting and recovering from my cancer surgery and hopefully reading alot. I won!! Its suppose to be random winner though. So another book for the tbr pile.

 

[macraven]

Super!!
You won
Hurray!!


Hope you get a book you have not read yet

 

[luvmarypoppins]

macraven how are things going. Hoping today is a good day for you.

I am going to start tackling the 20 plus papers mostly rules and releases from the surgeon, only about 3 pages of medical stuff

 

[macraven]

To be honest, I'm not doing much better

But know I will but will take more time


That is a whole lot of paperwork you have to complete!!

You need a secretary to handle that job for you

 

[luvmarypoppins]

macraven - sending you these to brighten your day. Are you still on complete bed rest? Thoughts and prayers for you!!

Well who wants to read a novel, because I am sure by the time I am done typing this will be one, lol,. And the avdenture continues...
The visit with a top thy cancer surgeon in NYC. Well to say we were enlightened was an understatement. This guy is fast, efficient and doesnt take much time with you. It took us 2 1/2 hours of bumper to bumper traffic just to get into the city. I called the secretary and kept begging her not to cancel the appt. We were 45 imn. late. She actually thought we were in the traffic that was caused by that guy running his car into Times Square. That was actually a few streets over I think.

First we saw the nurse pract. She asked why are you coming here and not there again. Hmm, thats easy. I said the surgeon almost killed me and I refuse to go back to him. She asked me when I first noticed the lump, not this one, like in my 30's hmm. She said the surgeon likes history, ok.

Did I also mention when I looked up online this surgeon is on the surgical board committee of the american thyroid association and also has a grant to study the molecular origin of thy canerr or something like that. Heavy stuff.

Then I saw the surgeon. Dh was cracking up because the nurse practic said oh tell your son. I said no, he is my husband. I said to him, I must look like 40 miles of bad road, or you look really young. This has happened with the limo driver at disney and also when I was getting the RAI in the hosp. We see a trend here. I promised to inform all new people that dh is my dh and not my son.

Anywho the surgeon is like in a 3 piece armani suit. Hmm, its 97 degrees out. He talks to me. Then he says he wants to scope me. Yup with the suit on. I say what are you looking for. He says he has to see how my vocal chords are because if they are not good he ha to do the surgery another way. I told him one was bruised very badly during surgery. He said he saw it and its ok, not great but acceptable for him. The L side is weaker than the R Then he does his own sonogram. He sees it and says it must come out. He said he is going to do a compartmental dissection and clean out and clean up everything and feels I should not have a problem after this. He feels it was microscopic stuff that was there from the first tumor and has now grown. He said it doesnt matter how many lymph nodes he takes out and the count. Hmm, I really didnt understand what he meant by that. He said this surgery should not be anything like the last one and I should just be sore for a few days. Drain out the next day and only one day in the hosp. huh? Dh and I told him I usually do not recover well. Surgeon also mentioned when he was at the univ. hosp. that dr. who almost killed me was only doing noses and he gave me an odd look, hmm, what is up with that. I think it was a secret signal that he was not the best choice for me. Also he commented, why do you have such a big scar on your neck. I said because they had to open up most of my neck when they couldnt obtain the airway when I was dying. He said he will give me a nice 2 inch scar now on the right side, lol. We all talked about our mutual love for the np at the univ. hosp in the ent dept. At least we all like her,

It also appears that I am going to the day surgery place. Um, they didnt say this when they gave me the papers. I guess this is how they operate in the city, get them in and get them out. He said I will stay overnight, dh cannot stay with me, sigh. Dint like that at all. The surgery date with be June 9 and I come home st. June 10th. Dh likes that because so much less traffic, but I just looked and that day is the Belmont Stakes for all your horse racing lovers. We will get stuck in that traffic, sigh. We have done that before and it could take up to an hour of bumper to bumper. Just the little part by the raceway no less. If the HOV lane is there we will luck out. Da3 says he wants to go so that would necessitate a hotel room. Dont know when the surgery time is yet but dh wants to drive in like 4 am to avoid the traffic no matter what. Also they have valet parking there. 60 bucks for 24 hours a steal in NYC.

So now monday I am going to the pcp for the pre surgical clearance. I can only get the ekg there I think and then I have to go to get blood work and a chest xray. My head is spinning because then I have to make sure all this goes and gets coordinated to NYC.
So I got a nice little early birthday present - a surgery date, lol. Sometime over the week end we will celebrate the b day and anniv because next week is just too crazy busy for everyone. Gotta do it when we can.

Check in when you can.

 

[macraven]

LMP

Oh my goodness!

You now found the best doc and he listens to you

Finally an encouragement and someone that knows how to handle the surgery for once and all

You will remember this upcoming birthday forever and be healed

Have you in my prayer list

I have a last minute squeezed in appt Monday morning with my surgeon as he needs to review my situation again

Still on bed rest and still have the two clots

If no progress is made within a specific time period, he is considering surgery to remove the clots

Right now so much is unknown and he is still baffled

I hope to learn more on Monday his new plan of action

Hope all are doing fine and have a lovely weekend

 

[Christine]

LMP, wow, this doctor sounds amazing. Are you feeling good about it all? Despite having to do surgery, it sounds like really good news.

macraven, sorry to hear that you are still on bed rest. You must be going crazy. Hopefully there will be some better news tomorrow.

 

[luvmarypoppins]

macraven - I hope your surgeon visit goes well today and that he has a good plan of action that you will feel comfortable with. Just wondering if he would consider sending you to a vascular dr. I went to one when I had the blood clot. He was really a surgeon and asked me why I was there, lol,. I said the er told me to see you for the blood clot. But they are nothing to fool around with and I hope you get the good care that you need and deserve. There will be light at the end of the tunnel. Hang on!! Prayers for you.,

Christine - I am feeling ok about it. I just am questioning some of what he says/his surgical philosophy so to speak, like what he said about the lymph nodes. I did say why arent you taking them all out, if you take them all out wont that mean there is less chance for the cancer to go places like that etc. I did emphasize that I dont want to have this surgery again. Meaning - take out everything necessary. I also am not liking the post op stuff. I havent asked and I am thinking I shouldnt because I am sure I will not like the answer and get upset. It sounds like they just keep you in a bed overnight in the holding/post op area pacu, not a real hosp. room because I read we have the ability to seamlessly take patients to the something hosp, if necessary (inpatient area). um o.k. I suppose it will be a group bathroom too, oh joy, lol!! But surgery wise he is the best,

My new pcp did the pre op today. She talks so fast and I dont know if its a cultural thing for her or just the way she practices. Glad dh was there for another set of ears. Got the ekg there too so 2 things off the list. Ds2 is suppose to take me for the blood work and chest xray tom. He has a field trip for the school but it might get cancelled because of the rain. Its at a farm and I am picturing mud, They needed a nurse and were begging him.

Does anyone use a patient portal. The pcp suggested I use it because she said she gets messages faster through e mail versus when I call the call center to leave a message for her. So I started the invitation process. Also the surgeon at the hosp has this too so I will check into that. Constant head spinning, paperwork etc. Sometimes its overwhelming because this stuff has not stopped since the end of March.

Had a nice bday lunch with most of the family except ds3 and we had ds2 gf with us so it was nice. 3 days from today we were suppose to be in Disney, sch is life. I will get my disney fix with the new Pirates movie.

 

[Christine]

LMP--several of my doctors use a patient portal and I actually REALLY like it. My GYN is the biggest user of it and it has been so much better just to jot off a message to him in the portal and he gets back to me right away. I think it's faster for them to just have the doctors do emails (plus they have a record) rather than the nurse taking your call, writing down all the info, then he/she has to relay it to the doctor and back to you and so on. I love it. Some of my other doctors have portals but just for appointments and test results. My endo still prefers to do the whole phone call thing.

Hope you had a great birthday (as much as you can at this point). I know it's a downer not to go to Disney when you had planned. At least you haven't had to wait 4 years like me!! I keep trying to plan a trip (with my "kids") but nothing seems to work out. My son just got an internship so he will be working through August 11th. I don't *really* want to go in August but the prices and air fare might be better.

 

[macraven]

Now how did I miss LMP birthday ?

I wrote it down being in June


Ok here goes ......

 

[luvmarypoppins]

macraven - how did your dr. visit go? Hope they come up with a plan that is good for you. Thanks for the b day wishes.

Well ds3 took me for the tests yest. I lost it with him. He was mad that I temporarily misplaced some of the test papers. I looked where I thought they were. Later I found out they slipped down somewhere. Honestly he just upsets me and treats me like a patient instead of a parent. I told dh for now on only he can take me for any testing unless its an absolute emergency. Ds3 also complained that I should get a handicapped permit. I said yes, I talked to the dr. about it, Added to the list etc. I told him he just does not understand all the stress I am under with all the testing I have had, phone calls, paper work etc. He is out of patience with me for sure. I hope he treats his patients better. I honestly never ask him to take me for any tests because I want him to enjoy his days off. But this did have to get done. We went to a new radiology place closer to our home and it was ok. On the way there a car hit a deer 4 cars ahead of us. I am glad I had my eyes closed. Ds said he saw antlers fly and the side mirror fly off the car but the guy just kept driving and never stopped. All in a day lol.

So now I just wait for them to call me with the surgery time. Dh already asked if I could be the first one of the day, lol,. The surgeon said, it doesnt matter what patient you are, I am ready to go any time of the day,. O.K. I guess dh is having nightmares about what happened last time with the surgeon. I didnt go till 2 pm and it went down hill from there. So we shall see.

 

[macraven]

Hugs LMP

Hope goes better for the upcoming surgery
You are not alone with as adult son getting sharp tone from them

One of mine tries to educate me on my Heath issues

I learned long ago to tune him out

Lol

 

[luvmarypoppins]

macraven - I hope the med is having some effect on your blood clots and that you are resting, but I am sure its driving you crazy

Yest. my pcp called me and told me all the blood tests and chest xrays were good so she is sending all my paperwork off to NYC. She was asking me about sleep apnea signs. saw that on the paperwork and also wondered why she never asked me that in the office.

We have sunshine today. I am enjoying it before the maybe on and off rain for the week end. Hopefully we will see the Pirates movie over the week end if dh doesnt have a work emergency.

Have a good week end everyone.

 

[luvmarypoppins]

macraven -how is the blood clot issues going? Hopefully you are feeling better.

This week is a week off for me, no drs., no tests, yippee!

Nurse from endo just called and said endo was trying to call me, never got a call hmm? Said the message was my new blood test were good with the one less synthyroid on sun days and she wanted to know my surgery date. Yes I need to sign up for the portal.

Also got some ins paperwork. The nuclear scan was like 2500! Wowsa. Glad for the ins.

Didn't see the movie. Dh work emergency sigh. Also more funding doom and gloom for him so we shall see

Check in when you can.

 

[SingingMom]

Wow! I sure missed a lot!!! I am so happy to hear you have found an excellent doctor, LMP. Just think, next month at this time you will be enjoying the warm weather as you recuperate and all is behind you. I will keep you in my prayers.

Macraven- I hope your blood clots have cleared and you are on your way to recovery too.

We just returned yesterday from our Adventures by Disney Spain trip. O.M.G. It was fabulous. Only problem was there was A LOT of walking, and my lower back gave me a lot of pain. Sciatica and lower back - not sure exactly what was going on. My feet are still killing me - SO much walking that I got blisters under my callouses!
But, it was so worth it - I can't believe how much we experienced. Then, we had two extra days in Madrid with DD's "friend". suffice it to say, he is a doll and I better not lose my baby to Spain! I told her he has to move to USA or forget it. lol Taxi strike happened our last day, so we had to take the metro to the airport - lugging all our luggage! That was tough, but we survived! Today DD is flying back to Orlando and starts her new position in Fantasyland on Friday. She got a call while we were in Madrid that she was promoted to FULL TIME! We are thrilled for her!

Now I'm trying to tackle laundry, mail, bills, and photos. Pick up the dog tomorrow, my nephew's law school graduation Sunday, and then plan to fly to Orlando mid June to bring home DD's bridesmaid's gown for her friend's August Connecticut wedding. DH & I are going to WDW in July to meet up with friends to spend a week together. Hopefully DD will have a little time off while we are all there - she will stay with us at the hotel - she made reservations at POFQ but they called her to switch it to Boardwalk due to construction. Fine with me!! Excited to stay at Boardwalk for the first time!

Feel better everyone.

 

[macraven]

Sad to say blood clots still there
Will be 5 weeks Thursday since knee surgery and Coumadin for clots

 

[SingingMom]

Sad to say blood clots still there
Will be 5 weeks Thursday since knee surgery and Coumadin for clots

So sorry! Surgery in the future?

 

[macraven]

So sorry! Surgery in the future?

Next tests to determine that, will be done later this week

I'm sure sooner or later things will be back to normal

And then I can move on for the parathyroid surgery

Thank you for asking singingMom

I appreciate all of you and your prayers

 

[luvmarypoppins]

singing mom - glad you had a great trip. Also how wonderful that your dd got a full time position. I am sure she is thrilled as you are. You are having a busy summer for sure! We stayed at the Boardwalk once. The room was huge but the place was really hard to navigate with a wheelchair. I used it for a walker and had to keep finding a place to go that was not stairs outside etc. Didnt use the pool but our room was right by one of the quiet pools.

macraven - how did your new testing go? I hope you got a good report. They told me it could take up to 6 months for the blood clot to disappear. I think it was more like 4 but they still made me stay on the med for another 2 months, so it was six months total for the med. I hope things are going in a good direction for you.

Christine - hope your son is liking is internship

I was happy to have a week off from medical stuff. Now its the home stretch this week. I had the pastor and elders of my church pray over me yest. I have been looking at the hotels and gosh just so expensive for the one closest to the hospital, disney prices for sure for deluxe. I will look at one more. Its hard for me to figure out the maps. Ds3 says just take a subway etc. I said look the whole point of this is to be as close to the hosp. in case something happens, sigh. Wisdom def. comes with age.

Now the bills are rolling in. Today I paid for one endo visit and one rad. onc visit. The rad. onc. charged my ins. company like $425, yes we did talk almost an hour. Oh and I was his last appt. before he went to a hosp. fund raiser where Joe Biden was speaking in the afternoon.

And yesterday was national cancer survivors day. The hosp. always does something but I never go. Its like they treat thy ca people like second class citizens anyway. But guess who was the speaker, none other than Jenn Arnold from The Little Couple. She actually worked at the hosp. A girl from our church actually said she was mean and bossy to the people. She was only a unit clerk but heard/observed this I guess. I think Bill also grew up around here. Very interesting.

So now the only big things left are to pick the hotel and wait for the call o wed. with the or time. It will be a good day weather wise. Thank heavens because next 3 days we are having rain. Someone send the sun up here. I think its lost!! lol.