Surgery today for luvmarypoppins. Update Post 7

[LouDisney]

I just wanted you to know I was thinking of you and praying for you.

 

[sarasotamom]

Thinking about you and praying for you. I believe in the power of prayer too. I have seen it work in family members and friends. Sending good thoughts your way.

 

[Mackey Mouse]

So.. just wanted to say to you that sometimes the drain has to stay in for a bit after a big surgery, which this sounds like it was. I know my daughters was taken out in the hospital, but with my husband's big surgery, he had it in for over 3 weeks, and we had to measure the output and keep track of it. It finally fell out on its own one night after that time and we panicked and called the doctor and he said not to worry, the amounts were down and if it fell out, it was time.

So take care of yourself, you are what is important right now.. Try not to get upset, just take as it comes...one day at a time. You have been through a lot....one more thing, I kept a little notebook so that when I thought of something that I needed to ask at the next appt, I would write it down. So, I would make sure I got all my questions answered...just so you know where you are and what to expect..

Hugs to you..

 

[breezy1077]

Just saying hi to everyone and hoping everyone is doing as well as can be expected Keep fighting!! I will keep praying for everyone. Well I am not rationing the pain pills. The np said they wil give me more since I had like 3 surgeries. I had to take it last night. I dont sleep well in the bed, better in a recliner right now. My tumor was 12 centimeters I think. Its stage 4 I think too since it spread, its papiliary but the pathologists again say they have never seen anything like this before, still rare etc. Next week I am going to the radiation oncologist and guess what, the person who called me from the office, I dont know what her eact role is, nurse etc. said, I knew it was YOU when I saw your name. I was the class mom for her son back in middle ds elementary school days. We talked alot!! She is a messianic jewish believer, this is not my religion and I have read this whole nurse thing on the CB board. Sorry, but I do believe in the power of prayer, no matter Who is praying for me and no matter what religion it is etc. I read this oncologist has written a chaper in a book about thyroid carcinoma. I just dont want her to put me in the chaper since mine is so rare., I think she will have to think outside the box so to speak etc. We will see what happens next week.

Prayers continue. I absolutely believe in divine healing, having been a witness to DH's. I will continue to pray for you and everyone on this board.

For anyone who's interested, the guy's name who came to our church the week after DH was healed was Roger Sapp. He has had great success with divine healing. Very unassuming - leaves it all up to God! He will even come to your church - He doesn't take pay, just love gifts, but he not only offers God's healing he gives seminars to teach you how to connect to it yourselves.

He also has a website that you can put your prayer request on and he and his prayer team will pray for healing for you.

I hope noone minds, I was going to PM the info - but I thought others might be interested also. Just trying to help!

Praying for you luvmarypoppins!

 

[luvmarypoppins]

Well yest. I went to the endo. She said m blood counts were good and could see I ws in alot of pain from the drain, yes I told her its an 8 on the scale, a constant 8. I was telling the Breast Cancer gals on the community board my oxy induced crazy dreams lately. The pain was really bad last night and I couldnt sleep well at all. Good news is the drain is coming out on thurs. if I get another reading below 30 today. Its still red and not yellow but the dr. said that is o.k.

The endo was discussing the tumor stuff and biopsy stuff in great detail with us. We will still speak to the radiation oncologist on thrus. I am going to ask her about a regular oncologist too. My head spins. They said they took out 47, gee why wonder I am in so much PAIN lymph nodes and 6 had cancer. They said this was a very good count. The agressive part was that is spread to the lymph nodes and this is the never seen it before part, they still cant tell but think a part of the tumor lodged itself into the lymph node or took over a lymph node and became its own cancer in and amongst itself, we did see this huge glowing rudolphs red nose as dh calls it on the pet scan. This is the something they have never seen before part. Of course, only this could happen to me.

 

[kimis]

You are in my continued prayers. Hang in there!

 

[luvmarypoppins]

Well good and then so ho hum news. The good news is that the drain is out and I feel much better without it in. I still have lots of pain, but it is less to worry about and easier to take a shower.

We saw the radiation oncologist. First the nurse. She was chewing gum the whole time talking to us. We had to wait over 1 hour to see the onc. She apologized to us. I was a little underimpressed to say the least. She does appear to be sick herself. I didnt want to ask questions. She had on a wig, swollen face, and very, very heavy. I just hope her health is such as she will be able to treat patients, She said the tumor is agressive, so she will treat it agressively while uping the radiation dose. I have to go get a shot, then another shot, then go into the hospital and stay overnight for radiation. Then be basically quarantined at home for a week. Sleep in the room by myself with the door closed, double flush the toilet, let the water run in the shower for 1 minute after I am done each time, use rubber gloves when touching stuff like the remote, only use disposable stuff while eating etc

Before that for 2 weeks I have to be on a very specialized diet in which you can eat pratically nothing except for beef, chicken, vegetable and tea or coffee and fresh fruit. Gotta keep fighting the beast. I asked the rad,. onc,. about survival numbers, prognosis etc. She said she would look stuff up in a book and get back to me. I told her I wish she would have sounded more promising, or be giving me a little hope over here like the surgeon and endocronologist did. She did give me a hug at the end which I thought was very nice. So dh told me just let it be, it is what it is, just take one day at a time. I am so glad I have alot of faith. Its a blessing.

 

[hentob]

I think about you everyday

 

[Christine]

luvmarypoppins--

Sounds as if you are getting standard thyroid cancer treatment. I've had the radioactive iodine treatment 3 times (150 mci dose for two of those treatments). I am assuming they will give you more. I am sort of surprised that they are giving you the Thyrogen injections prior to treatment rather than having you become severely hypothyroid, but I guess they are doing that more and more now. I have had the injections (not for treatment but for diagnostic scans).

The diet they are putting you on is the Low Iodine diet. It is VERY important to adhere to this prior to your treatment. It will STARVE all of your thyroid cells of iodine and allow the radioactive iodine to do it's job. When you show up for your treatment, your remaining thyroid cells--cancerous and normal--will be STARVING for iodine like it was heroin to an addict. This will make your treatment as successful as it can be.

If you haven't done so yet, please visit the thyroid cancer survivors website, www.thyca.org. They have some good low iodine recipes and tips for coping with the diet.

 

[Regina]

I'm so sorry that you're going through this. I definitely can tell that you have a fighting spirit and are going to battle this disease with every ounce of your strength.

I'll be praying for you!

 

[luvmarypoppins]

luvmarypoppins--

Sounds as if you are getting standard thyroid cancer treatment. I've had the radioactive iodine treatment 3 times (150 mci dose for two of those treatments). I am assuming they will give you more. I am sort of surprised that they are giving you the Thyrogen injections prior to treatment rather than having you become severely hypothyroid, but I guess they are doing that more and more now. I have had the injections (not for treatment but for diagnostic scans).

The diet they are putting you on is the Low Iodine diet. It is VERY important to adhere to this prior to your treatment. It will STARVE all of your thyroid cells of iodine and allow the radioactive iodine to do it's job. When you show up for your treatment, your remaining thyroid cells--cancerous and normal--will be STARVING for iodine like it was heroin to an addict. This will make your treatment as successful as it can be.

I printed out the whole cookbook. Worse around here we have an underground aquifer for our water so we cannot use tap water so I have to go buy distilled water. I have talked to the dietician at the hosp. and I have to call her again today to go over stuff. This whole thing makes me head spin. I think I am getting the shots because I am staying as an impatient overnight for the isotope and she is uping my radiation dose, I have to ask if that because I wil be an inpatient or because of the lymph node involvement etc. I though she said she wants me to be hyper as it will work better? I cant remember. I need to ask how hyper I will be,like I dont want palpatations etc. I think I will loose a lot of weight on this diet for suure. She did tell me the treatment will most likely give me:

Flu like symptoms
Sore throat, need to find the sour lemon candy, dont know where yet
Metallic tast like in chemo patients for food
And of course, add that to staying practically quarenteened at home for a week later. Wow, I need all the prayers I can get for sure!

 

[Mackey Mouse]

Hugs to you and let us know how you do... I have been there with my daughter many times as she scans......so far 10 years and still good... we like that..

 

[Christine]

I printed out the whole cookbook. Worse around here we have an underground aquifer for our water so we cannot use tap water so I have to go buy distilled water. I have talked to the dietician at the hosp. and I have to call her again today to go over stuff. This whole thing makes me head spin. I think I am getting the shots because I am staying as an impatient overnight for the isotope and she is uping my radiation dose, I have to ask if that because I wil be an inpatient or because of the lymph node involvement etc. I though she said she wants me to be hyper as it will work better? I cant remember. I need to ask how hyper I will be,like I dont want palpatations etc. I think I will loose a lot of weight on this diet for suure. She did tell me the treatment will most likely give me:

Flu like symptoms
Sore throat, need to find the sour lemon candy, dont know where yet
Metallic tast like in chemo patients for food
And of course, add that to staying practically quarenteened at home for a week later. Wow, I need all the prayers I can get for sure!

Actually, they want you to be HYPOthyroid not hyper. The injections mimic hypothyroidism. They cause your TSH to increase, which in turn, causes your thyroid cells to be more avid. There is some doubt in the medical community that the injections (Thyrogen) can stimulate the thyroid cells as well as becoming hypothyroid the "old fashioned way" (not taking thyroid medication for 6 weeks). I'm sure they have a reason for choosing the injections for you--most likely they still believe you have a lot of thyroid tissue left in your next and, therefore, you may not get sufficiently hypothyroid on your own. At any rate, the shots will not truly make you hypothyroid.

The side effects you get will be due to Radioactive Iodine. It is a high dose and can make you feel achy. I felt sort of like I had been hit by the flu about 8 hours after my dose. There has also be contrary information given out on the lemon drops candy. We used to be told to use it, now they are saying that it actually worsens the situation. For me, I ate so many that it did cause problems. They now say you should just eat some fruit and regular intervals (grapes and oranges work well). I wish I could remember the reason why they said no more candy.

Depending on what state you live in, most people are required to have a one or two night stay because of the radiation.

For the diet, the best thing is to keep it very simple. I stuck with oatmeal most mornings. For dessert, I would get a ripe banana, put it in a oven at about 325 degrees, bake it until the peel was black (this carmelizes the sugars in the banana). I would then put it on a plate, peeled, and drizzle real maple syrup over it. Satisified my sweet tooth. For dinner, just plain chicken, steak and veggies. I did lose some weight on the diet. About 8 lbs.

 

[Christine]

Hugs to you and let us know how you do... I have been there with my daughter many times as she scans......so far 10 years and still good... we like that..

Does your daughter get ultrasounds of the neck?

I've never had one during my 14 years with this. I changed doctors and now he wants one regularly. Needless to say, I'm a bit nervous.

 

[Mackey Mouse]

Yes she does... When she has an appt with her endocrinologist, she has one. You are doing great.. her doctor does it as a matter of monitoring her..

Hugs!!!!! Christine, no worrying... think that your new doctor is doing what is up to date to monitor you.. Hey, I love Virginia and go to an Inn in Charles City.... great state....friendly people, good food.. just thought I would tell you as it says you are from Northern VA..

 

[Christine]

Yes she does... When she has an appt with her endocrinologist, she has one. You are doing great.. her doctor does it as a matter of monitoring her..

Hugs!!!!! Christine, no worrying... think that your new doctor is doing what is up to date to monitor you.. Hey, I love Virginia and go to an Inn in Charles City.... great state....friendly people, good food.. just thought I would tell you as it says you are from Northern VA..

Thanks.

I knew that ultrasounds were part of the protocol these days but I just never had one. Now I'm worried about what they might find--I mean, after two surgeries my neck has gotta be a mess. Worried about them just trying to biopsy me a lot if things don't look right. I know that, in the long run, it's better to be safe than sorry but I've had quite a few experiences with ultrasounds of the breasts and benign lumps. It's like the harder they look, the more they see, and often times it is nothing but they sure stress you out.

I'm not familiar with Charles City. That can't be Northern VA can it?? The Northern part of VA is like a whole different place than the "Rest of VA" or ROVA. They joke around here that we need our own statehood.

 

[luvmarypoppins]

Well I went to the radiation oncologist yest. and it was not good news or maybe not the news I wanted to hear, dh said.

I am really having a hard time adjusting to this lady. Its not that I dont like her, I guess I dont like how she says or I should say, doesnt say things. Its like I have to pull all the information out of her, she never volunteers anything on her own and only specifically answers any question you pose to her lst. She said she wont do the radiation until the wound is closed from my bowel obstruction surgery, Then its Passover and Spring Break here in NY and she is going away april 6-17. So the radiation and 2 shots will be the week of april 20th.

I asked her for some statistics and she said this time she would have some, Well she didnt. I told her I read stuff on the internet etc. She said, she sees, 1 person a year with what I have its so rare and that is why there are no statistics. She said its aggresive and she will up the dose. I told her I read this goes to your lungs and bones,. She said if it comes back it will most likely come back to the neck. So I am glad I have alot of faith in God because that is what is keeping me going and my dh is just being so positive for me. and encouraging. I told the dr. I am a fighter so I will fight. I wish if she knew anything she would say it, since this is MY LIFE we are talking about. So I guess its just going to be keep testing, watching, waiting and looking all the time for now on.
I also dont know why she didnt tell me this stuff the last time I was there, etc.

Dh said not to tell the ds everything. They have their own lives and dont need to be stressing about this too.

Also I cant understand why the surgeon and endo who both had my biopsy results said I would be fine and the radiation onc. is saying nothing like this etc. My head spins. Oh the cancer coaster is on the fast track today for sure

 

[Christine]

luvmarypoppins--

First, let me give a cyber hug . This is all so stressful.

Radiation oncologists are NOTORIOUSLY dour and depressing individuals. They deal with many people, for many years who have poor prognoses. They have a hard time, I think, being positive for their patients that do have a good outcome. I think the type of work they must do dehumanizes them a little bit (or a lot). Try to keep that in mind and march on. Also, doctors cannot predict cancer and they do not want to falsely give a patient *only* good news. She is bound by her field to tell you the worst possible outcome.

My friend who has colon cancer was actually "fired" by her oncologist because she asked him to many questions and "pressed" him on why he was doing certain things. He stormed out of the room and said she needed to find another doctor. This woman sounds much like the guy she was dealing with.

But let's just say you are stuck with her. Just know that despite her crappy attitude, she is going to treat you to the best of her ability.

I can definitely undertand why she won't treat you until your prior surgery to the bowel has healed. The radioactive iodine travels through the GI tract and can irritate the lining of your esophagus, stomach, intestines and colon. When you have your scan you will see those areas "light up" quite well. She does not want to cause further irritation to the the bowel obstruction site and I think that is wise.

I am also glad that she will give you a large dose. Do you know if you have the Tall Cell variant of papillary--is that why it is agressive. I know a guy from the thyca group who had this (he lives in my area) and we have met on occasion. He had several surgeries to his neck (neck dissections actually) and he is doing very well many years later but he had a rougher go of it early on (as you are).

I am confident in my heart that you will come through this and be okay but I know how scary it is right now.

 

[luvmarypoppins]

Thanks for your info and encouragement Christine., Yeah, unfortunately, this is the only lady I can go to. She is their only rad. onc. who specializes in thyroid. Everyone specializes in stuff here at the univ. hosp. I saw in the hall another dr. whos speciality seems to be kidney stuff etc. and he seemed so much nicer.

I have the columnar cell variant and it was in 6 of the 47 lymph nodes they took out. So if you know of any info about this or anyone who seems to be surviving. I would appreciate that news, even if they arent, its good to know what to expect I guess. I gotta keep on fighting the beast!!

 

[Christine]

Thanks for your info and encouragement Christine., Yeah, unfortunately, this is the only lady I can go to. She is their only rad. onc. who specializes in thyroid. Everyone specializes in stuff here at the univ. hosp. I saw in the hall another dr. whos speciality seems to be kidney stuff etc. and he seemed so much nicer.

I have the columnar cell variant and it was in 6 of the 47 lymph nodes they took out. So if you know of any info about this or anyone who seems to be surviving. I would appreciate that news, even if they arent, its good to know what to expect I guess. I gotta keep on fighting the beast!!

Unfortunately, I don't participate much anymore on the thyroid cancer support group (I try not to dwell on it like I used to). So I don't know if there is anyone there with that at this point. I will surely keep my eyes open. The good news is that columnar cell variant seems to have a very good prognosis for women.