Here's what cheezed me off today

Rohanna, I have never posted here, but like the topic. I had an consult with a genetist 2 days ago. They cannot ask for permission for the testing unless you have 2 close relatives dx before 50. Everyone, in my family literally gets and dies from cancer ( breast or lung ) but all are dx in there 60s. My cousin died at 39, lung.

The testing is spendy, insurance Co. Have guidelines. It seems like alot of ladies on these threads do have the Braca test done. The did calculate the chances for my daughter, getting bc, 29 %. Obviously, those who want the test done can pay out of pocket, Yikes !  She said my odds of the Bracca gene was 3%. 

Just found this thread and love it.  But I'll probably be just a lurker because my daily 40mg of Prozac generally keeps me from getting cheezed off by stupid stuff.  On the other hand, I do get cheezed off when I read about the dolts some of you are married to,.

Well today I found my nerve and finally did it! Taken me years!

I have a handicap license plate. Use it most of the time. Went to Publix today and there was a GOLF CART parked in handicap spot. They are street legal here. Pissed me off big time. Called the cops. Went in store, then I hear " will the owner of the golf cart please come to front desk". 2 cops were waiting there. 

Ha! Take that story and your ticket back to your golf buddies. 

Yes just take it to DMV. The hang tag is free here, my license plate was a one time $20,  I think the hang tag is a bother. 

Have fibro an PN too. Check your vitD level, getting that up to more normal helped my pain more than any pain pill. 

rohanna, I have no doubt in my mind that neuropathy and all these fun aches and pains are all a direct result of BC treatment.  Kinda effed up that we have to get sick to be healed.  What kind of shit is that??  Oh well, at least we are still here and of course we are at least healthy enough to not be crapping in someone's dressing room.  I was thinking of that yesterday while I was waiting for the body scan.  Oh the memories that keep us smiling.  Some think of a warm summer day, others think of their darling children or grandchildren while I think of crap in a dressing room.  Can you believe it's been about 2.5 years now?

So, why the heck can't you go back to work?  What about part time?  I bet doing something you would enjoy would help a lot.  Your focus would be in a whole different direction and you never know how your body would react once your head was happy.  Just think about it.  I know you like your onc., but since when do you let others call the shots for you?  Why is the onc against it?

Okay, enough of you, back to me :-).  The brain training game and the memory games on my tablet may really be helping.  I've been finding words quicker and even when others are searching for a word, I've been right on.  I definitely plan to keep it up.  As for the radioactive crap test... I did it yesterday.  I am hoping I can pick up a copy of the scan and report tomorrow.  I never had any concern about mets until the oncologist brought up this test.  He's hoping for a good case of neuropathy!

OH Ro Thank you I love sparkles sassy

RO- cool when did I teach you that?----------purfectttttttt cake- In my pot induced mellowness the sparkles are even nicer. Makes me happy when you say _I help'd................HHMMMMMhhhhhhmmmmm.............

So, I call my imaging company this morning and ask if my films and reports are ready.  Office worker says yes and tells me that films and a report will be prepared for me and I can pick up everthing up (information on mets or not) at 12:00p.  So, then I think... well, maybe I should give my doctor a chance to tell me the good or bad news.  I call and ask for the results from my test, knowing darn well I will have them in a couple of hours anyway.  By 12:15p no call so I pick up the report myself.  I decided to take the papers into the car and read what it says.  I was also hoping the report would be cut and dry to read as I've never read that type of report before.

I am happy to say that all is well.  No mets!  You guys are stuck with me.  Damn doctors!  First they scare the heck out of me and then I didn't even get a call first thing to give me the results.  I still haven't had a call, but eff them.  I'm off to enjoy a night of music with my son knowing for now that my days aren't numbered :-).

sas... know i remember why I don't smoke pot anymore ;-).  Happy anniversary!

Ro hoohoo, No pot's no legal here. Should be legal everywhere. It's an enforcement nightmare. As bad as prohibition. It oh so helps with the pain. 

ROcKy-----------YAY, so cool.......... BTW regarding when you broke your foot and walked on it forever, the last dog fall I had, something in the foot just didn't feel right. I figured I could walk etc, didn't get it checked out......used to the falls, eventually stuff heals. Well a while ago I was doing that early first wake up stretch in bed You know the stretch that happens unintentionally. WELL there was this POP and burn and hurt. A few minutes later all was well. Something was --dislocated. So, happy now, no pain . Wish that'd happen with the rest of the body

Lovewins- did any of that stuff on Insomnia help with sleeping?

Spookie, I'm supposed to take 50,000i.u. twice a month. But have some concerns re:kidney that I want to address with him next visit.

The first wweks dosing of 50,000 was for I think 5 or 7 days. It was the most unuaul wonderful  feeling ever. Never felt that way again. I'm guessing my whole body was drinking it up. 

the dosing I can understand. How it works on the cellular level and the negative feed-back system with the pituitary and parathyroids and intestine is what I'm having trouble with. I understand all the other neg-fb systems , but this is something way different. 

OOps breakfast starting to burn

Spookie from the time we got my measurable blood level up. it was in the 40'sto 50. Doc was happy with that I wasn't, I wanted it higher. We debated allot.

What happened when my lab came back at 30(last early fall) on the once a month 50,000, he couldn't explain, but he was satisfied b/c low normal is 30. I wanted /needed an explanation as to why the sudden drop. Particularly,since I was swimming almost every day in the sun. I got more sun in that period than at any other time in say 30-35 years. Theoretically, my lab value should have been the best yet. It wasn't.  

I, also, had unusual fatigue, fibro increase, etc.  That's when he increased me to twice a month @ 50,000. Again, theoretically, the expectation was that my lab would significantly increase. It didn't. The next lab was 33. After studying the vita D use in the body, I learned that it is stored in the intestine and released when stimulated by low levels of calcium. The exact how of this is what I couldn't decipher. I read the words, but I couldn't "get it". I usually get this biology stuff reasonably well, this one's got me scratching my head. What was happening to me didn't make sense. 

Then this May when the thyroid was found to be enlarged, it raised the question to me as to what affect was anything having on the parathyroids as well as what was happening to the thyroid. There are specific tests for the parathyroids---pituitary hormones and direct parathyroid hormones

I asked the endocrine doc for a specific MRI to evaluate for iron levels----long story. The call back was that he was having some pituitary studies done. I had them drawn yesterday. Several were questionable b/c I've had a total hyster and ovaries out in 1996. Running an LH  seems strange, but he has a rationale. I just don't know it. Plus, he had a cortisol and estradiol--relate to adrenal gland. Okay, but I expected that he would run the tests related to Parathyroid Hormone calcium levels, and others-----he didn't.

The ENT doc that is also following my thyroid, last visit I asked for a freeT4 and a T3 and autoimmune antibodies. This was based on the rationale: that we all jumped on the "cancer worry train" and perhaps some basic labs should have been done in the beginning when the enlarged thyroid was found on MRI. The TSH is routinely run every 6 months b/c I'm on thyroid med since 2007. Usually if the TSH is in range the free T4 and T3 are normal, but they can be abnormal.

He ran them. The Thyroglobulin which measure autoimmune is abnormal, but the antibody component is normal. That with the bx results identifying follicular cells is not a good combo----I have an appointment this afternoon. My wish is that they just take the thyroid out. Perhaps an ananlogy is DCIS and IDC. I need to be convinced we aren't sitting looking and waiting for this to turn cancerous. My reading suggests that we are. BUT all the endocrine stuff is soooooooo involved, I can't make a conclusion b/c I don't know enough.

AND what the hell is up with the D changes?

My problem as I see it is it's a bit too hodge podge for me. AND I have two docs qualified to independently to evaluate the thyroid, parathyroids, and VitaD(endocrine doc only). We all know I'm a pain in the ass. Both docs are very respecting of me, but I don't want too or should not be the one suggesting what tests need to be done.

It may sound like my docs aren't up to snuff, but they are......really, I feel privileged to have them. I would feel allot better if they talked to each other and an allgorhitm be done to see what we know and what we don't know.-----that'll be the crux of the visit suggestion this afternoon. Plus, there is a part of me that expects him to say let's remove it. Not sure what I'll do if he says to do another bx.