Here's what cheezed me off today

Wise words from a great lady. 

Repost from IT ---sassy

Now 16:41---4:41 pm All the reading I did this morning is forgotten mostly, busy day.

Saw ENT today, got a call to come in. New it was trouble b/c he released me last week.

2nd opinion path report verbally passed to local path guy then to ENT. Final copy not even received yet. Papillary-follicular CA both sides of thyroid. ENT guy thinks I'm brilliant because I had to convince him to do sx. Path guy relooked at original bx and said he can now see it was there. HMMMMMMMM. Carmono has been a path guy for >the 22 years I've lived here. SOOOO, have to think that one over.

My instinct the fourth time around.

1. Breast--PBMX--thinking about it for three years very hard. Then my inner voice said DO IT >>>1/2 way through workup find aggressive, really rapidly growing ca. Doc lied about feeling lump to get the MRI done after clean mammo. Bingo.

2.Brain, actually, that was caught cuz I fell on the other side of the head. So, the fall was a blessing. The Instinct kept pushing for MRI look. It was stable for 2years. But as soon as they noted growth on MRI, I said out with it. They wanted to continue watchful waiting--UH_UH. Continued growth would have allowed it to cross the line into ca. Found a sx on the internet that I had to teach the docs and insurance company about b/c not done anywhere here and they didn't know it existed. Had to go to Tampa.

3.Colon--Instinct to do follow up, got doc convinced to do a scope 1 1/2 years early ----Inner voice said DO IT. So, to get it done I added that I saw blood and had pain. A lie . He knew it. Doc found one for sure hyperplastic of three polyps ---these are precancerous.

4.Now thyroid. You've all read the story. The story didn't match any of the Hashimotos description to a tee. The request late Jan. to do basic blood work, identified that thyroglobulin elevation. An inner voice said to ask for that blood work.That bumped both docs to sx. Biopsy and ultrasound didn't indicate it was that troublesome.

NO one is ever going to deny my instinct in the future. They wouldn't dare with those types of odds.

May have the friggin colon just taken out.--being dramatic, but believe it or not that could be done. FYI Cleveland Clinic in Cleveland Ohio does a procedure that removes the whole colon and connects the end of the small intestine to the anus. It takes a bit of training to control the anus, but is doable. I know someone who it's worked for for years. Cami, it may be something to consider. Never thought of it till now for you. It would stop the explosions. A thought, I'll research it if you want. It'd get rid of the pesky colon and it wouldn't be moving around inside causing all the pain.

Treatment Radioactive iodine--haven't researched it yet. But at least I know the genetic paths. It'll help with dosing if it goes through those abnormal '3''s. It will be done within , one week even if I have to sit on everyone till they shout approved.

Plan to push for genetic testing cuz I believe the paternal side of the family is at risk. My scenario fits three different genetic thingys. Chek2, Lifraumeni syndrome, Li fraumeni Like Syndrome. Haven't been able to get family interested in individual surveillance. 53 blood relatives. Even two highly, highly trained nurses have blown it off as not genetically related. 24 major cancers out of 53 people is NOT--- NOT chance or lifestyle.

I know we have Bluebird and Nicky too worry about. Everyone here has "stuff" on their plate. April is worried about her DD, but gave her a list by PM of suggestions. So, how does the phrase go "Cry not for me etc". I'm in fight mode--translation everybody will do what I want, as fast as I want it done or my the will suffer my pestering them.

It's the best type of thyroid cancer to have. Mine's a tish rare, but still good stats.

So, tonights' plan is my usual whenever bad news occurs. I go out to a very very nice dinner.

Sorry, this is so long, but it's part of the plan. It's my manifesto. It starts here.Basically, talking to my brain setting up it's attitude.  L&H&P's sassy

Sas- I am sorry to hear the thyroid has cancer, but as you say, you just knew. Intuition is a gift all women possess very strongly, but we have all been discouraged to listening to it. It is never wrong, as you say, each time you knew something was not right. Let us know how we can help and support you here.

I should be getting my genetics test back soon. It has been about a month and may call tomorrow to find out if there are any results yet. Anything I can share on this test that may be helpful for you, I will most certainly do. I know you have a strong family history (where we do not, but do have some). Like you, it comes down the paternal side.

Sas- I know I can find you on the Insomniacs thread. My home thread in the Hermits (where it all began for me here).

P.S. Is your avatar a bluebird? Beautiful.

RO" "Sas wouldn't let them get away with that!" You sure know how to make a girls day . A physician that Listens, and then ANSWERS the question that was asked, Then teaches what needs to be taught to create a full understanding are worth their weight in gold.

I will contemplate for awhile about this misdiagnosis by the pathologist. I need to let the emotional aspect of it subside. 8 months of missed treatment is a long time. No question with my BC that length of time would have meant death. Need to see the final path report on the thyroid. Everyone is acting based on phone calls. I think I said Mayo, but it was Quest that did the 2nd opinion. The path doc Carmona admitted after taking look at the July 2013, tissue biopsy that it was there. He didn't have too. It took a very ethical man to say he made a mistake. See that adds to the dilemma. But my other dilemma is my life or a spread i.e.to the larynx. Thinking of not talking for the rest of my life. All these thoughts will take time and perspective and distance from event.

Studies have shown the number one way to avoid a lawsuit when a mistake is made, is too admit to the mistake. It's taught on the in hospital level, and conferences level. BUT the truly unethical don't admit their mistakes.

Once had a case where the doc drew up too much med for an epidural. Three times I stopped him and showed him the bottle and said the other docs only use 1cc.(0.5cc?) He said that's fine this is what I use. He injected it. The patient was the hospital CEO. WTF. I reported it. The senior administrator nurse and the second in charge nurse said to each other do we have to tell him---the CEO/patient. I said "Yes, it's the law" They looked at me like I had horns. They called the administering doc. He admitted I followed protocol by holding up the med --which makes them look at drug, route , and dose. That I stopped him 3x's. The administering doc said he would notify the CEO/patient---don't know if he did. He also, was reticent about notifying the CEO/patient. All were on speaker phone so I know what was said.

When the usual docs got back, I was asked what happened. By then the WHOLE story changed. The administering doc changed the whole story. Not an iota was the same. But since I had worked with the other docs, they believed me. They new I was meticulous about how the procedure worked and steps.

Oddity, epidurals haven't got the greatest success rate. CEO's worked with the one injection, no untoward side affect. Never had a recurrence. He mentioned it in conversation to a third party in my presence about how great it was. BUT it wasn't the accepted standard dose.

Hells bells, if all the docs had restudied the scenario, they might have come up with a better plan and created a better delivery dose.

If you re-read this with the thought of analyzing the ethics, at each step, there were flaws. My part was right, the anesthesiologist did read the label, knew what he was drawing up was different than they other docs. I made him aware of it three times. Everyone else's part just sucked.

What could I have done different, was stop the procedure and inform the patient that his treatment was different than what the other three docs practice was. That could have cost me my license and I wasn't a doc. There are parameters. The parameters have ranges. He was outside the range I knew. I didn't stop it b/c I DIDN'T KNOW  UNEQUIVOCALLY, IF I WAS RIGHT. Still wonder, otherwise I wouldn't have related the story.

I know people think I know allot, but I learned as a very young nurse, doc's don't know everything. That's why I worked very hard at knowing what they knew, should know, and more than what they knew. It was protection for the patient and myself. My self deprecating joke in that regard is, if I had studied that hard in school, I could have been a doc.

Somehow, I hope you see a point. Errors can be made by the best. Carmona has > 25 years experience. His dx of Lymphoctic thyroiditis on the post thyroidectomy path, he could have let stand. Yet, he sent it for a 2nd opinion. Hence, my dilemma. 

Time and contemplation.

The bluebird was in support of Bluebird that had emergency sx for a brain tumor. Someone suggested that as many as could change there avatars to bluebirds in support of her, and someone else gave directions and it worked. I would so love to keep it b/c it's beautiful. I'll wait till Bluebird is back and see.

This is my usual answer to a post like yours at this moment in time

I got a birthday card today from a 20 year friend that was not all that nice to me during diagnosis or treatment. Lots of questions and judgement about everything, and expecting it all to go back to the way it was before. I may have mentioned this story here before. Anyways, I have not from her since before Xmas and was sort of thinking it was done. 

I read the card and note she sent and really just realized it is now not about her, but about me. Who I am now and what I want. I need friends in my life who can be present with my new normal. I did not feel any need to respond to this note. At most, she might get a generic Xmas card end of the year, if that. 

I think we all do really want to believe people care about us. But we all have people writing or texting or doing whatever that has more to do with their needs than anything to do with us. Don't beat yourself up about the texts. You made the effort, and they blew it and that is that. There is a lot of crazy shit out there!

Darn it's only been 7 hours since rohanna's been on!  Maybe I should go back to bed and chime in in a couple of hours... nah.  Wait... you should have gone to bed a couple hours earlier.  See it's all about me :-). 

Jazz, you definitely nailed it in regard to others.  Even before cancer I realized I was only keeping people around who made me feel good about myself, made me laugh or simply had something positive to add to my life or even the community.  I've been though a lot in my life and really don't have the time, nor the patience for mean or flaky people.  Heck, I even put my MIL on notice 16 years ago when I had it up to my eyeballs with her.  You better bet she's pulled it together some since.

So, my house colors were approved and the painter is coming in two weeks.  The approval meeting was a cheeze story, but for now I'll hold my cheezeness.  Anyway, I was out in my neighborhood when I was telling my cheeze story to a neighbor and saying that I either have to let go of the anger or do something.  She was so funny... she says "you beat cancer you can deal with anything."  I felt like superwomen for a moment.