Here's what cheezed me off today

Anonymous

I signed up for the Relay for Life. I'll let you know how it goes. It's weekend after next. Since it was sponsored  by the American Cancer Society, I thought it might be more legit.

sas-schatzi

Hi my friends, Off for awhile--PhGraham has been here since last Thursday, and Spookie came sunday and left tues. We had a great visit. GREAT. Phylliy leaves tomorrow morning and is going up the east coast for a ways then back to Nebraska. 

I get the RAI 131 on Monday the 21st for the thyroid ca. Have learned allot. LOL when don't I. Biggest thing I learned was ------I didn't know squat about how to eat on the low iodine diet. Felt starving much of the time------all those damn vegetables and fruits----free foods. What I wanted was bread and butter LLLLOL. Finally, near the end and I have a clue. Fats. Bacon was a free food.

I used the food list from the RO's office. Finally when I was concerned test must be delayed the office nurse (very sweet), took me to the nih.gov site. So, much better than the hand out. Did I say BACON?

I get the drug and then in the house for three days, then I'm maxing everything out to the researches limits, for the safety of others. If I can set off airport alarms up to 4 months after I guess I'm radioactive and a bright star for awhile

sas-schatzi

Rocky so, sorry that stupid foot is still giving you problems. The MRI is an annoyance, but the foot is still annoying your life  . 

Ro, have fun with R4L. not sure they make a dent, but you may meet some interesting people. 

Carpe Diem---thanks again for posting on 2d6. It's fun changing the world. It's going to start happening fast now. I talk fairly regularly with the sales lead guy. We talked today, and I asked him about my counselor. He went on and on what a great guy he was. I said guess whose counselor he was? Guess who turned him on to Genelex? Loads of laughing. He says he's the only counselor using the system, but has made such a difference in his life professionally and personally. Pretty special ..........

Anonymous

BACON!

Rockym

House is now painted, no cavities/loose crowns on dentist visit and I even started to remove my makeup last night when I realized I didn't have any on!  I just need to get through the MRI for my foot and the dreaded mammo on the boobs/microcalcifications and then there should be some free sailing for a bit.  Oh I almost forgot... for those struggling with the weight gain from treatment, chemo, menopause, etc., give caloriecount.com a try.  I finally reached my goal after 3.5 months.  The way I figured it, I wasn't going anywhere anyway.  Time was marching on so it paid to cut the calories so I can look at my ass again with some respect :-).

Spookiesmom

Sas posted on insomnia that she had THE PILL today. She will be off the boards for a few days, till she is less radioactive. 

purple32

rohanna

so glad u r back!

Colostomy is a BIG challenge.  My husband had stage 4 colon cancer and had an ileostomy in 2009 (UGH)  Thank goodness he was able to reverse.

I hope you are on the mend!

sas-schatzi

Purple so, glad to see you back, What's up with you? Where'd you go.

Spookie Thanks for thinking to let my friends know what was up with me.

Ro & rocky& jazzy. Had Rai 131 for thyroid ca this week. Two simple looking white PILLS kicked my butt. It was not a breeze. I'm worn out. It was a new experience. Learned allot. New soapbox.

Found out my pathologist is an incompetent analpore. 

Off to get a meter read on geiger counter.

Rockym

sas, glad to hear you"re done with the zap.  I don"t know why, but I was reminded of my loving kitty who got zapped years ago.  I was preggy and wasn't allowed to clean the box for a bit as we were told her poop was radioactive.  In the end she was healthy and fine and never had to take a pill for the 8 more years she lived... 19 human and who knows how many cat years!  Hope this works as well for you as it did for the kitty :-).l

purple32

Thanks so much, sas schatzi!

I miseed everyone.

I've been tending to various boring, stressful and chronic health issues ... :>)

As for

"Whats up ?"
I need help from you ladies.

Pls visit my new " GARMENT " thread under LE forum for details.

Many Thanks!

Jazzygirl

Sas- so good to hear from you and glad you are on the other side of the rads. I remember the bc rad treatments only too well, and they wore me out.

Keep us posted and share with us as you are up to it.

purple32

Had Rai 131 for thyroid ca this week.....

Me again, sas!

I had this yrs ago for my multi nodular goiter in throid.  My endo dr wanted to do it againa and do biopsies etc etc etc...whan I was dx with BC, but I told her no. Only could deal with the thought of one cancer at a  time!  Then alomg came my lovely little sidekick, LE and  a few other nuisances , and all has been put on the back burner.

I wish you well!

OH, and I wish I had an atty for a son!  :>)

Jazzygirl

Hi folks- sharing this article on a couple threads and wanted to post it here too. It also sort of cheezes me off on this Monday morning.

The article talks about the impacts of bc treatment, especially chemo, on longer term employment. I know many on these threads struggle with staying employment during treatment, or have lost jobs in the process of treatment, and may have challenges getting work after the fact.

http://www.medicalnewstoday.com/articles/275889.ph...

There are two things that bother me about all of this. One I believe is true in the business community, which is that if you give hiring managers a reason to not keep you employed or hire you for anything, they will. I am self employed and when I was diagnosed, I was lucky to be in between contract assignments and kept my news to a limited few trustworthy friends and kept it out of my professional network. I got through surgery and went back to work PT as I really needed to be working, and I went through rad treatment at the beginning of this current contract. I said nada to anyone at my client site, that I know well, as I started my new work, despite some telling me I should share it with my client. She never knew and never will. I made it work for me to keep things private, but for many who are FT employed and have to do FMLA when they get diagnosed, they have no choice but to tell their employers.

The second is that the healthcare industry does not do a good holistic job of looking at patient outcomes (both clinical and financial). I work in healthcare on the money side of it, and know the clinicians want to be sure they give you the best treatment and the financial side wants to ensure they get paid for it. But many times they don't think about the financial impacts to what they are recommending you (for either the short or longer term). It is not just being able to afford the co-pays and out of pocket. It is all the rest that goes with this. 

Information is power and hope this is helpful to you all here in some day today.

sas-schatzi

Thanks folks about suffering through rai131. For me I can't just --do it, I have to analyze it. LOL

I have a call out , and waiting for a call back from the Nuclear Regulatory Commission. I specified the quailifications of the types of people I want in on the call. John the intake person kept trying to redirect me to the State of Florida person. Said "UH-UH, no one has this topic figured out in the 60 some years of use, I'm not going to let a sub- agencies or state fucntionary screw it up. Ya'll are top dog. I want to talk with the top dog people. 

So, I'm guessing I'm being reviewed from a risk analysis point of view, and all my communications are being monitored. ERHHHH Like this one 

Lordy, if they try reading all 9000 plus post and put them in some sort of context. 

It's been an interesting experience that I don't want to repeat, and per-usual I am now very educated and opionated on the subject. Lordy, lordy. I thought I studied it before hand, not even close. Now my, my.

But I do believe I, actually, feel killing of bad stuff going on. Too long to describe, but very very good

Going to C&P this to IT too. They suffered my day to day thing with this and it will save time bringing them up to speed.

L&H&P's sassy

Anonymous

Purple, so glad to see you back! Sorry you've been going through so much. Yep, the colostomy was a nightmare. And my surgeon didn't tell me how long it would take to recover but things are getting better. So glad your DH and I got the reversal. A lot of people choose not to. Of course, my entire torso now looks like a bad science experiment but, I'll take it.

Rock, Yaaaaay, you've been getting good news. Awesome to also hear that the painting's done. But are you sure you don't need to borrow some plumbing-based yard art? Prayers for good MRI results and an easy booby squeeze. Personally, I find a whispered string of cuss words helps.

Sas and Jazz, thanks for the updates and info. I learn so much here.

Keeping everyone in my prayers and I love you guys!

Anonymous

Purple, which thread under the LE forum?

Jazzygirl

Hi Spookie- I know you dropped off the hermits thread, but wanted you to know I am still here on this thread with you. Hope you are doing well today!

Spookiesmom

Yeah, I did. No Clooney jokes here, yet!  I'm ok, hope you have a great week!

purple32

Hi ROHANNA

Thanks!  Nice to ' see you'.

There is a thread called GARMENT !  under LE

Anonymous

Purple, thanks, I'll check it out.
Well, Cheezers, I just got back from the Relay for Life event and it was AWESOME! My favorite event was the the Drag Queen Beauty contest. Man, those were some plug ugly ladies with tattoos and beards. The "lady" with the toilet paper roll boobs won. I got to ride in a '55 Studebaker in the Survivor Parade. Love Studebakers! It was really a lot of fun but I just couldn't hang until 5:30 a.m. If you get a chance to participate in a Relay you won't regret it. Lots of free gifts, food, fun and you get to hug hunky firemen dressed in pink all you want. We raised a lot of money for the American Cancer Society but I really enjoyed meeting other survivors. But now it's time to take my tired old bones off to bed. Everyone have a great weekend!

sas-schatzi

Ro, nice that you had fun.....Hunky firemen huh....welll must rethink this one

BTW as far as LE try to locate Kira and Binney4, they are the so knowledgeable. Kira and Binney answered some questions for me on flying, it's a short thread- 2pages. I bump it every once in a awhile. I'll bring the link.

https://community.breastcancer.org/forum/64/topic/...

Anonymous

Thanks, Sas, love your new avatar.

What I'm having the most trouble with now is the Peripheral Neuropathy. My legs from thigh to knee turn cold, then numb and sometimes give way beneath me. My onc. thinks it's from the abdominal surgeries. Also my left shoulder is still numb from the lymph node removal. It's so weird to touch your skin and not feel it. I've been told there's no treatment.

How are things going with your thyroid? I'll check the Insomnia thread when I log off this one. Pray you've gotten some good news.

Love and hugs, Cheezers!

purple32

My onc. thinks it's from the abdominal surgeries. Also my left shoulder is still numb from the lymph node removal. It's so weird to touch your skin and not feel it. I've been told there's no treatment.

Rohanna

THINKS?

No treatment ?

Be careful there Rohanna!  You just waved 2 red flags.

 My husband had numbness and pain ( it's now been 11 mos) and suggested to his doc that it might be from all the ' excess rads' he had ( He had stage 4 colon cancer @ 5 yrs) and  dr. said he thinks yes and it is permanent  w/ no tx . avail.  Never ordered x rays , MRI, nerve tests or anything at all.

FINALLY  got dx with many issues in lumbar spine and the SI joint/ hip.  ( app 1  week ago!)    He let 11 mos go by !  About to make a PT appt.  but looks like he may have perm nerve damage from waiting so long. (he now walks with a limp!  ) According to other dr. who took the x rays, this has NOTHING whatsoever to do with his rads at all.  Just hoping the P.T will help at this stage of the game.

Unfortunately, we do get 'other things' besides those cancer related.  
Pls. see a dr. to test and evalauate , not just guess.

Good Luck to you!

sas-schatzi

Ro, thanks , I just changed it again this morning LOL. I didn't have an avatar for years. Someone on Insomnia thread taught me how a few weeks ago. I downloaded oodles of pics. Now I'm having great fun changing it all the time. I think -- what or who---- do I want to be today.

Remember when you see Don Quixote. I'm chasing a windmill someplace on the threads LOL.

Well, I did tell you it was cancer right. The pathologist missed it in last summers bx. So about 10 months of no treatment. That was pretty emotionally devastating. May not of had to take RAI131, if he done a proper look and staining of the bx slide. 

He didn't even "see' it at removal of thyroid. He sent it out for 2nd opinion. Quest labs used 3 different stains, found it diffusely throughout thyroid, both lobes. He Never saw it b/c he didn't use the stains they did---sucks eh? But once they called him he did a re-look at last summers slide admitted he could see it. 

I asked for some basic bloodwork in Jan. T3 , Free T4 and auto antibodies. The Thyroglobulin(Tg) came back elevated at 52. Top normal 30. At removal 45 days later it was 109. At RAI time april 21st the Tg was 12.5. Good, better than 109, but cut off for reconsidering RAI was 10. Whole body scan 10 day after RAI showed no mets. Thyroid mets's to similar places as BC. There was "Intense uptake in thyroid bed" --doesn't mean that there are cancer cells, but there could be. So,  the RAI treatment is ablating any thyroid cells left. If there are any bugger cancer cells left--the hope is they get KILLED.

If I hadn't asked for the blood work, we wouldn't have known the TG was elevated and antibodies neg. ENT surgeon was taking surgery within 1 minute of hearing the elevation. And the endocrinologist called the same day and wanted another biopsy.

RadioActiveIodine 131---messing with the entire body--literally head to toe. Some problems may be permanent. Just like friggen BC treatment----won't know for awhile. 

I will be glowing until July 25th. 

sas-schatzi

Ro, This topic thread was done by Cincerely (cindy) she has researched the topic well. She does a blog that you can link too. She will answer questions. I should bump her more. It's in re: CIPN &RIPN.

https://community.breastcancer.org/forum/69/topic/...

It's only three pages, the important thing is to read her blog. She knows her stuff on CIPN & RIPN.

sas-schatzi

CHIT just look at all the friggen errors in several posts. MY DH was dx'd with Lymphoma 3 months after me. He was stage 4 at dx. My guess is he had it for years. He wanted me to stay out of his medical care. His doc gave him pain meds for years for low back pain. Never did one test. One film would have identified the LYmphoma. 

sas-schatzi

Purple, sorry to hear you had/have a thyroid problem too. I'm no wuss or maybe I'm just not as tough as usual. But the s.e. are head to feet. and most body systems. Oh well.... Chit

Jazzy add this to your list of threads and pass it on

http://www.cancerandcareers.org/en

purple32

Never saw it b/c he didn't use the stains they did-

DOH!!!!!!!!!!!!!

SAS

I must admit - this story sounds quite familair. I havent had much luck with DRS.  When they found my BC in mammo, I asked to look at the prior  years films. They said : " That IS last years " and pointed to a comparison pic. ( I thought it was just 2 views ) I said :"  Isnt that white area suspicious?" and the radiologist said :"  Yes, I'm sorry-  I guess he missed it.  I wasnt the one who read it last year."   DOH!   Missed it ?

I had the stupid LX and opted out of all TX due to other health issues.  Just one month later, I was hearing national news saying such early statge BC might be better off left alone.

DOH!

Now I have LE forever, and feel as though I *seeded*  my BC !

DOH!

Rockym

rohanna, I'm glad the run was fun!  My MRI came back with nada.  We aren't sure how or what to do yet, but I'm trying 800mg Advil 3 times a day to see if there is some inflammation I can get rid of.  I'm pretty sure it's some kind of nerve damage...  I was I could blame it on chemo, but at this point I think I am a bit too far out.  I do know about the numbness crap.  My left pit area has been that way for almost 3 years now and from what I hear of my friend who is 15 years out... it's as good as it gets.  I suppose there are worse areas that could be numb ;-).

However, I would love some plumbing art for the front yard.  I can't even begin to tell the story of two -itches that I have had to deal with.  It blows me away that these are actually neighbors, not getting paid, just pissing people off because they can.  My main satisfaction with these twits is that even having dealt with cancer, no hair, etc... my life is probably way more happy then theirs.

sas, I recall I had a cat with thyroid disease.  It was sort of funny, because after the birth of my 1st kid, I had hyperthyroid.  It was wild, but it did resolve itself.  A few years later my cat's vet told me that my cat had the same hyperthyroid that I did.  It was weird, but they had me bring her to a place that gave her some radioactive meds and they had to keep her for a few days.  When she came back home, I wasn't allowed to change her litter box since I was pregnant with my 2nd kid.  That was a long time ago, but the kitty was cured and I never had to pill her.

sas-schatzi

Rocky, In my learning on the thyroid the last few weeks, there is a postpartum hyperthyroidism that usually resolves itself--well there you go, you were one. Surprised they let you be in the house with the cat, you being prego. 

There is ALLOT not dealt with in the articles & protocols that I read. But prego's are in all the articles and protocols. Kids too.

Rocky , I think you are talking about your foot? Google '" Reflexive Sympathetic Dystrophy".  You will pull some info. Sometime ago they gave it a new name. The new name never stuck with me b/c I had moved on to something else. Again , you will pull info , but you'll see right away the newer articles use a never name for it. I'll do a quick look and add links if I find something.

Found lots, linked to only one. New name "Complex Regional Pain Syndrome". I know you're a reader. There's lots of info on it

http://www.ninds.nih.gov/disorders/reflex_sympathe...