INSOMNIACS place to talk in the wee hours

tangandchris

WEll they are switching me to levaquin from cefepime....haha...we will see!

Holeinone

Tangandchris, 

This is the best group of women, I really needed a place to feel like I could be myself & luckily became part of the Insomniac Owlettes...lol.  I was 1/2 through chemo and it was tough. 

Our dx are very similar, except for those pesky TE you had. I am about 4 months ahead of you in tx.  My RO told me today, it will be a year from dx before I can expect to feel like normal, or my new normal... It is a roller coaster and we will all be there for you. Seems therapeutic to be able come here. Everyone gets it, unlike our friends & family..

tangandchris

Yes, no one really gets it and even when you are surrounded by people who want to help, it can feel so alone.

Where are you Holeinone...for some reason I'm thinking you are not in the states.

Anonymous

Trying to catch up (first attempt)

Teka - sweet photo (now, is it teh-kuh or tee-kuh or something else?)

Chevy, Callie cat-dog was a cat but was smart and acted like a dog (answered to her name, waiting for me by the door when I returned, followed me around the house, keep me company with outside chores...)

Sas, failed my first night on the job (newbie-greeter)

Yesterday and today were busy-crazy! Missed you all. Will try to give the hi-lites later. For those in earlier time zones, sweet dream! Hopefully. will get to others in a couple hours before night-night time. Not sure how late I'll be awake till tonight. 

camillegal

Tang u'll actually get more needed rest with chemo, cuz u just go when they tell u and sit and relax and hoping u'r body takes it well and if it's rocky u tell u'r Onc and they have more meds for u. We'll be here for u so we'll do what we can to help u in any way. It does get so tiring with all the tests, u feel like u'r going to glow if they turn off the lights. So we do understand.

camillegal

2nd time Oh I was never feeling bad about being so slow, walking slow and just in general slow, I knew I was but didn't care and I was never late for school or work or anything, So it was all right for me, it didn't scar me or anything, well nothing really did, but then again I never cared hahaha

Njmom3

question ladies, anyone have an echocardiogram after surgery?  The chemo they are putting me on can cause heart disease, or something, anyway mo wants an echo to make sure all is ok...  The problem is, I still have stitches and a drain from last weeks surgery on my te incision on the left side. They cAnt press down and no way are they putting that gel on my stitches that I am babying...  Pretty stressed about this.

I also have a pain in my back in my shoulder blade area, definitely feels like muscle tension, imagine that, but it also goes under my arm pit and the back of my arm.  Hard to explain.  Tired of questioning every ache and pain.

tangandchris

I had an echo-but it wasn't that soon after surgery. Do they know you just had the surgery?

Blessings2011

Oh, Owlettes - thank you for your kind words. Will be back if I can to post an update.

tangandchris.... I'm confused! Did you get drains after your implant removal? I didn't think you had, or I would have suggested that. Or are you saying that either the tubing or the flat perforated portion had been left in you all this time? Yikes! At least the docs are on it now...

tangandchris

Blessing-

Yes, they put new drains in after the TE removal on Monday. I'm thinking it is the drain too, but I am still going to see the BS tomorrow to put my mind at ease. I love my BS, I wish she could be my PS and MO too

So, yes...prayers that this is only the drain and nothing left behind after surgery.

Blessings2011

tangandchris - Do you know what the drain looks like after it disappears into your body?

You obviously know about the plastic "hand grenade" bulb that collects fluid, and the clear plastic stretchy tube that connects the bulb to your body. 

The clear tubing can be as long as 36". But once that tube disappears into your body, it is thicker, flattened out, and full of holes - kind of like a sprinkler hose. That part is usually about 8" long, and is snaked around where your TEs were removed.

Here's a picture of the internal part of the drain.... does that look like what you are feeling? Thank goodness drains are temporary!!!

Holeinone

Tangandchris,  I live in S. Idaho..I should try to put it under my name & get some photo...lol...

Njmom, I had the echo test, but drains were out & I had a lumpectomy, are you getting A/C ?

Jazzygirl

Blessings- I am behind on the posts but heart goes out to you on the elder care issues and helping of the MIL as she transitions. One of my friends says that being born and dying is a messy business, as it is very hard to come into the world and not always easy to leave either. I pray for an easy transition for her and that everything else is better for your family soon. Take care of yourself during this time too.

Blessings2011

Aw, thank you Jazzygirl! 

We started "comfort care only" yesterday, so it will probably happen sometime in the next week. Even though we are all intellectually and spiritually ready, the emotional part is much harder for some family members.

Elder care and loss of elderly parents is such a universal challenge, isn't it!

xoxo

camillegal

Blessing so true and age makes no difference it just hard to say goodbye.

NJ are u having an echo or a MUGA--cuz Mugas are pretty standard.

Jazzygirl

Blessings- loss of parents is truly life changing. I lost my mother two years ago this March, and we knew it was coming but when the call came, I still felt very unprepared. Like bc, it teaches us life is short and not to mess around. Live each day to the best and don't sweat the small stuff.....

Teka

Good Morning!!

*Hugs* so many *Hugs* needed as the week ends on Groundhog Day!

Enerva

Good morning, sending hugs, there are no words that can comfort the loss of love one.

 

sas-schatzi

Cami, You are such a wonder at using words. LoL about pacing my self. The endocrinologist ordered a bunch of pituitary test and thyroid. Some were cross ordered by the ENT doc. One of the pituitary hormone levels came back abnormal is cortisol it's actually an adrenal hormone. Cortisol allows the body to respond to stress. Mine came back low. Now we have another problem to decipher. The irony is I could have finally wore out my adrenals. 

BUTBUTBUT, the one lab test that could have or should have been ordered by either the endocrine or ENT doc that would have helped decipher the thyroid wasn't ordered by either of them. It was in a group that I requested b/c they would cover the basics. Each of them wanted to do another ultrasound and or biopsy. One of the labs I requested came back abnormal. The autoimmune antibodies/thyroglubulin.

The thyroglubulin came back abnormal. When the other half(antibodies) of the test is normal, then the tH being abnormal, indicates cancer. In the ENT's office Tues, I learned that it is used as the tumor marker once the cancer is removed. That's why I'm scheduled for the thyroid removal. BUT the doc won't commit to it being cancer until the full path report is in. 

Scratching my head as to why the autoimmune tests weren't ordered to begin with? We could have taken out the thyroid months ago when the first biopsy had follicular cells present.

*(&^$%$%^, The indicators(elevated tH and Follicular cells) are cancer, but won't know until path report. Did I say where is the ativan? OH yeah found it! Real tired of seeing the end of the goal line, then it gets moved. Apparently, my adrenal glands are tired of it too!

Now I have to learn the minutae of pituitary ACTH/Cortisol. I know stuff, but not the very in-depth stuff. I keep telling God, I don't need anymore lessons. I could be perfectly happy without any new lessons.

sas-schatzi

NJ or tang------whomever's getting the ECHO/MUGA.  The bump is the drain as you describe it now. How to do the Echo---try this: tell them you want a "sterile plastic sleeve" put over the probe. That you want a new gell tube opened . Have the first portion squeezed out and discarded. Technician to wear mask and sterile gloves. Sterile gauze used to clean off gel. Ask for a nurse to stand and assist as needed, so the technician won't contaminate anything. 

In diagnostic imaging which usually includes the cardio suites, they almost always have a nurse. If they don't have one ask for one from OR or pre-op.

Each step I suggested has a reason. If you explain it to a nurse they will understand right away. The technician may know also b/c what is ordered to be done is pretty routine for them. Not routine for you I know.

Teka

sas, your head must be just a buzz.   Sorry!

tangandchris

Blessings-That could very well be it, it just feels pointy under my skin and as silly as I feel...I didn't realize it went in where the TE was....or that it was even that long!

sas-schatzi

Teka thanks, but LOL adrenals can't respond, so La de da. Another thing I've learned b/c I started reading about cortisol is one of it's symptoms can be weight gain------I've been complaining to both docs and PCP since Jan2013 that weight was piling on. It's now 40 lbs. Low cortisol can do it, Already knew low thyroid could do it. Low cortisol can lead to c/o joint & muscle pain DUH, Hair falling out. Lots of the same things as Low thyroid. Endocrine doc only doing these studies cuz I was pushing for a FERRI scan. New type of MRI. So, these studies are effectively coming in the back door cuz I was pushy for something else, OH well Gotto go learn more stuff.

Teka

sas, you need to take a time out from medical crap!

Wren44

Tang, I was astonished to see how long the drain was. Who would think?

Holeinone

Good late morning to all...afternoon for the easterners

Njmom, I had the muga & EKG, said echo but I didn't, easy to get it mixed up..

Sasafras, sorry you are going through another health crisis, damn girl ! I hate to sound so uninformed but is that a big surgery? I know they cut through our neck, but Thats about it.

Hugs to Blessings, Chevy, & all....

Tomorrow is my last whole breast radiation, then 5 boosts to the axillary area...

Golfgirl

sas-schatzi

Okay just read two articles on low cortisol levels and affect on psych status of the test groups. I was diverging from the physical stuff. 

If I were teaching how to read studies these two would have been classic for "evaluating studies"

conclusion of each study

1."findings suggest a link between positive psychological functioning and lowered cortisol release" . 

2.These findings suggest "that low levels of cortisol may set the balance between the sensitivity for punishment and reward dependency towards a pre-disposition for psychopathy."

The first study found a positive link and lowered cortisol levels the second found a correlation between psychopathy link and lowered cortisol.

I know it sounds greek, BUT these studies were measuring the same things and came to opposite conclusions-----one healthy, and the second unhealthy.  They each proved their hypothesis.(not shown here)

My teaching to students would be, "This is why one should NEVER base and opinion or conclusion BASED on one study" A singular study should be followed by at least two more studies that use the same hypothesis and method of research to prove or disprove the hypothesis. 

SOOO, if I only looked at one study only, and took it to be true; and my cortisol levels were consistently low: #1 study, I would demonstrate behavior in the category of ______Buffkin. #2. study, I would demonstrate abnormal behavior in the category of Dr. Lector. 

sas-schatzi

Teka, funny, that's what my counselor says in a way. He's convinced I am ADHD. My uniform focus within that puzzle is science----he says my brain just ignores most other things.

It's an easy out from house cleaning.

But then there is the added focus of junking

tangandchris

I'm exhausted today ya'll. I am going to start Levaquin which can cause issues with my heart since I'm on Celexa...chances are low, but still I hate having something having over my head like this. I'm just tired and kind of depressed I think. Being sick sucks, having cancer has just consumed my life. Does it ever get better???

luvmygoats

Don't mention that "c" word - not cancer, but cleaning. Yuck. The wind is kicking up so hard and it's so dry. I've piled up phone chargers, meds, dog collar/tags, lists of passwords to websites, checkbook. Located intact dog crate. Washed clothes. Smells smoky outside but neighbor has fireplace and I could see heat waves coming off it this morning so hope that's just all. Have scanner on but our county is mostly "truncated" so I hear only bits/pieces. Mostly I'm hearing medic calls for county north of us. At least we'll get some rain next week. Just get thru this wind today. No sense dusting.

Tang - Is Levaquin your only choice? Did culture pinpoint it?

Njmom - shoulder pain? New? Could it be from positioning during surgery or something you've changed since surg - like sleeping posture/reaching for things. I was amazed when I had shoulder PT how involved the muscles were supporting the shoulder. Explained a lot of the pain I have both sides. I thought shoulder meant mostly over the shoulder but it can be way underneath/outside the axilla too and down outside back. Scary thinking about pain there - axilla. Maybe Sassy will jump in here. I think the rule most use is for a new pain talk to doc if lasts longer than 2 weeks (unless darn good explanation for it) or sooner if acute, fever, redness, swelling, drainage - esp. post surgical.