INSOMNIACS place to talk in the wee hours
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o marla. Sorry for the loss of your brother. What a hard day. Time def doesn't heal everything but it makes it a little easier to deal with everyday.
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Finished swimming. Now cold, wet and more alert.
Tomorrow I'll post a nip pic.
Here's a couple more pics. Hope others post more pics also
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ds2 and me getting our silly on
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Ds2, great niece and our dog Maggie
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Awww...such darlings!! I don't believe a word of what you said about your great niece. Look at that angelic face!!
A nip pic?!? Patty, I know you are transparent, but you are not going to give us a topless pic of yourself...are you ???
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Ay yay yay!!! Didn't realize how long of a "cut and paste" meditation guide. So sorry, so sorry!! No wonder Ms. Sas fell into slumber, Ms Chevy's imagination went haywire, and our dear Marlana slept the whole day. OK, I promise I won't do that again. Just a picture then
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lovey. - oh no not that transparent. (Blushing ). I will put the nips on the table and take pics. Lol. My insurance provides so many bras every 6 mo. I can get bras, swimming wear, camisoles and nighties for free. A couple times ago when I went in to get some bras the owner had these set aside for me. Said was something new they were carrying.
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Good morning friends- hoping those that were up last night were able to get to sleep in the end.
Patty, did you go swimming? I love night swimming. I lived in Puerto Rico for a time in earlier adult life for a few months working on a project, and we would work long hours, eat dinner and around 8 p.m. or so, go swimming in the pool that was part of the little apartment complex we lived in. I have lived in other places/apts that had pool but that was the only place I ever would go at night. I hope the swim helped you Patty!
Going to get my permanent crown on my tooth today. Then hopefully I will be done with my dental stuff for a bit. Eyes checked, teeth checked, boobs in progress.......
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Okay Peppermint, I just read what you posted 14 hours ago.... No, we are going up to Echo Lake today... Went to Blackhawk to gamble yesterday! It was a fun day...
I don't know nothin' about no nipple anything! Don't pay any attention to Sass... We ALL have to talk.... lots!
What is this dick stuff? This thread is taking a turn for the worse... or is it getting a little loopy?
Now Queenie.... I'm surprised Sass didn't give you that talking to about your stress, and how a good romp in the hay would help. But EYE know, stress has to be gotten rid of. It causes so many other things to go hay-wire.... Like rapid-heart-beat, stomach problems, heart-burn, and that's just to mention a FEW!
I don't know about drugs.... sometimes those things help for awhile, but cause other problems themselves... I should open my own clinic..... But check with us first, before you go taking those meds....Okay Sass, what are we doing here with miss FrencyFry? Are we SURE this reaction is from the chemo??? I mean I'm sure it is coming from "inside" and not something she is getting into.
Cool water sounds good... don't know about the ice... might as well sick her hands in the freezer! Maybe just a moderately cool soak? And then don't dry off... just let air-dry, and then something like Vaseline, and soft cotton gloves? We have to get to the bottom of this...
So all this talk about nips.... Okay... I just think that if you are younger then whatever you do to make yourself feel that you look BETTER, is fine. I mean if someone else were going to SEE me, then I might THINK about those add-on's... but you gotta really think about this.... I heard that Mr. Vinnie.... (Where IS that man? Here I thought we had something going, and he drops out of SIGHT!) He is the Nip-man, and I heard he can do wonders... even with his Tattoo's!
Jazzy, sorry about the memorial service... It's hard to watch your friends go through their grief... And would you quit making up all this accident stuff! Those Insurance guys...(dicks) just wait for someone like us... so they can act all smarty-pants and make you think you know NOTHING!
I would be mad too! And frustrated! It's their JOB to make your life miserable. Hang in there kid.
Morning Loverly! Beautiful calming picture....
Spookie, you too! It's so nice and cool here right now....
Oh what IS this??? I mean Peppermint is going commando whilst swimming? That was a funny post! Haaaaaaa! No... if anyone is looking at you, why all the bother of shooting them? Just say, "Hey big guy, wanna swim?" Dogs will just have to get used to it... Same with DH.
Oh Marla? How did I MISS this? I'm sorry... ...
Jazzy, good luck with your crown, Princess! Hah!
Love you guys...
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Loverly, I love the pics, Soothing. Even though I'm in Florida, I don't get to see beach scenes like those often. Very nice. Portable nips.
Chevyyyyyyyyyyyyyyy, I said the exact polar opposite. I LOVE Patty posting more. CHIT. I'm in trouble with everyone. Glad you had a fun day with the girls. Tell them we said Hellooooo.. You are probably on the road already. Chevy, Jazzy told Queenie better than I could. I suppose I could have mentioned Essex, I will later. Marleys hands occurred within so many hours of chemo. Cause and effect. Chevy do you ever read totally what I write. "Make ice water, SCOOP out the ice, insert hands"
Frenchfrye Check the search function on the menu for Hand Foot syndrome. It can be caused by some chemo's. They're is at least one thread. I checked it out when I had a skin issue with chemo. Haven't looked at it since. Plus, check out the thread regarding nail loss with certain chemo's They ice them. Not sure of the how too's. But it's described on the thread.
Jazzy, no pain today.
Queenie Essex is our word for sex. Go to Essex often. Lot's of skin time if you don't feel like going all the way to Essex. Very nice.
Chevy is that good?
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maybe we should start calling the docs --dickydoc would be useful in describing paternalistic know it all's that don't listen.
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On another forum, they are called dicktors. And that's the nice term.
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Okay, let's go through suggestions, or just start using all of them.
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Thank you, all! (marlanab, scottiesmom, chevy, sas-shatzi, smaarty...did I miss anyone? I'm sorry!)
Taking lots of notes, practicing what the psychologist suggested yesterday, trying to stay calm ahead of tomorrow's followup visit with Dr. Surgeon--sweet deity, I hope he got clean margins this time! I don't think I could manage another surgery so soon, mentally or physically. But just knowing the range of reactions, and the ways people deal with this, and the range of appearances, helps with my own stress. So much of mine was simply fear of the unknown! and once that unknown happened (what will my breast look like after surgery #2?), a little bit lifted.
At this point, though, I think I'm going to stand firm on "No further treatment until a) I get a second opinion and b) after I come back from visiting Dad." Dr. Second Opinion will almost certainly come back with "What local doctors said/want to do." but that'll (I hope) give me a bit more time to settle down mentally. I don't think five weeks will make a huge difference in my prognosis, and they wouldn't be able to start fads until after I come back anyway.
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Queen- getting a second opinion is always a good way when you are not sure of anything. And please don't assume they will be in line with one another either. Sometimes that has been true for me, other times not true. Even if the second opinion helps you to go with the first recommendation, it is a valuable thing to do. After having some things "missed" in the past that could have killed me, I have learned to go for the second opinions when something does not feel right. Just be sure they don't do the actual "referral" for the second opinion to one of their colleagues, or you may get the same advice.
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Jazzy: good point about the 'not one of their colleagues'. While I don't think Dr. SecondOpinion would consciously support Dr. FirstOncologist's diagnosis just because they worked together, there's a very real chance they'd have talked my case over already, and come to a joint opinion. Not to mention that people who work for/at the same facility would approach cancer treatment in the same way. Just as an example I've noticed already: the swimming/no swimming after surgery, and during rads. Some say yes, some say not at all, some say "It depends on how you react to rads/what surgery you had/what incision closure I used."
Though I'm not sure how far afield I'll need to go to get a second opinion! There's a decent (and larger) cancer center about an hour away in Kalamazoo--the one I went to for ovarian surgery last year--but they're simply a larger hospital than the one local to me. Does it have to be a teaching hospital affiliated with a major medical school? a research center? I'm in an awkward position geographically; Chicago's right around the corner of Lake Michigan, with two train lines I could take to get into the city...but they're across state lines, and BCBSM gets real pissy about paying for out-of-state treatments. The University of Michigan's got a decent medical school, but they're way over on the other side of the state, three hours away over uncomfortable roads.
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Queen- if you have experience with a larger hospital somewhere else you can get to (outside the area), all the better. I had two different doctors in two different cities evaluate me for which type of rads to have. The one in town suggested the initial recommendation was the best for my situation to go to AZ for internal rads, and gave me a lot of cons for doing it the other way. Helped me to know the initial recommendation was best. My BS was trying to manage the whole thing and very poor at helping me to understand. She cut the RO's out of the process, but I pulled them back in. I think going to Kalamazoo would be a great idea.
Anything with cancer treatment deserves a second opinion if you feel you need it.
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I agree with getting 2 opinion away from #1. My center has a tumor board that meets weekly, all new cases are discussed. That was my BS, MO, and RO. Along with all the other docs in those offices. I was so shell shocked a second opinion never crossed my mind. And wouldn't have done it anyway.
Right now it's all about YOU and what makes you comfortable. When you get the plan in place and start moving forward with treatment, it does get better. You feel like you have some control on this ride.
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NCCN centers near you are Uof M and Robert Lurie in Chicago
http://www.nccn.org/members/profiles/northwestern.aspx
http://www.nccn.org/members/profiles/umichigan.aspx
I checked with U of M regarding affiliation of Borgess and Bronson Hospitals in Kalamazoo. No affiliation.
If you are going for a 2nd opinion, I think a trip to a NCCN center is worth the effort. Otherwise you effectively are just going across the street. They're only 26 NCCN facilities world wide. You can wander all around the NCCN web page to get a view of why they are special. Is it an absolute that it's necessary to go to a NCCN hospital? Depends on your perspective. Yes and no. You already have the ball rolling. You want confirmation that the plan is right.
I didn't go to a NCCN facility for BC plan opinion. No regrets. Didn't get a 2nd opinion for BC treatment plan. No regrets. My BC was straight forward fit the allgorithm. My oncology group is affiliated with Moffitt which is in the NCCN. With that affiliation, my local docs have weekly access to the tumor board at Moffitt. Not all patients go through review with Moffitt. (my)Spacecoast Cancer Center (SCCC)follows the clinical pathway guidelines that are essentially an allogrithm. If the pathway indicates a patient needs cooperative evaluation of data by Moffitt, they are presented at the next weeks meeting. If an unaffiliated oncology/ologist wants an evaluation from an NCCN hospital arrangements need to be made. Otherwise, the treatment plan is determined locally with the involvement of the local tumor board.
Between Moffitt affiliation and the other Quality certifications, I was comfortable that they were delivering the highest standards of care for BC.
Brain tumor was totally another game. Because of my surgical training, I felt they're had to be newer advances in craniotomies than what was being offered locally. Without verifying with my MO as I write. I would say my tumor didn't "Ring the Bell' as being anything unusual. Moffitt wasn't consulted. The local(one of a few) neurosurgeons in the county was the ultimate authority. He raised no red flags to the MO. The neurosurgeon stated he could handle my brain tumor without me being sent elsewhere. So, SCCC having that special relationship with Moffitt didn't work. I found the surgical procedure I needed on my own(google). I chose Moffit from the limited facilities offering base of the brain surgery in Florida. This was my first contact with Moffitt. It was patient driven, not physician driven.
Why do I know this must be true. Had the MO presented my case to Moffitt, my MO would have been told 'Yes, we have the surgical ability to manage this case. It's called base of the brain surgery." LOL, hells bells, it would have saved me a bunch of research time.
Thyroid cancer was another game changer. I wasn't presented to Moffitt by the MO. Special relationship didn't work again, but for a different reason. The Mo turned my care over to several docs. I chose to go to Moffitt because the surgeon, ENT, Endocrinologist, RO all were presenting too many variations on treatment and future plan. Based on my brain care at Moffitt, I realized my local docs weren't perhaps up to the elite standards I expected.
Interesting
. In trying to help you. I've helped myself more. I've not quite put the retrospective picture together as I have today. I now know why the system failed me. My MO thought too much of our local docs. All highly respected and credentialed. I thought they were too. He and I depended on the neurosurgeon, ENT, Endocrinologist, RO to be to a higher standard than they are/were.After the thyroid experience, I said I would never go through not having an evaluation at a NCCN center in another cancer occurrence. Now I feel even stronger in that regard
This is going to be cut and pasted and sent to my MO. He's a wonderful competent practitioner. Methinks, he'll bring it before the group for discussion.
Queenie hope this gives you some useful info
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Sassy- my new subcontract agreement is coming later this week and they said there is a new project coming next week too that I may be able to submit for. Fingers crossed!
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A colleague of my stepfather suggested (from afar) that the surgery/radiation/tamoxifen was an appropriate treatment for my cancer stage, though I'd still insist on an up close and personal evaluation. I wouldn't mind going to Kalamazoo--there's a lovely bed and breakfast there where we stayed after ovarian surgery, though I'd quite like to stay there sometime when I was NOT under the shadow of cancer!
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Good Morning all.....
PATTYPEPPER, HOOTIE Hoo !
Today, July 14 is National nude day....
Looks like fun, eh?
Queenie, my Cancer was advanced, with extra nodal extension. Yes, I woke up from surgery & thought "what the hell is she crying about". DD was very upset. Then it hit me, shit! Not good. I live in a ag area, somewhat rural. Did not get a 2nd opinion. I was too traumatized & wanted to start treatment, now. I hope you get the good news soon, they got it all, and it is still DCIS. Your plan is common, only change might be, getting a aromatase inhibitor. If you were post menopausal. Nothing wrong with getting another opinion, just not always necessary. Chemo is a bitch, you won't need to do that
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Queen- Hol makes a good point. I had very early BC with some IDC and DCIS so I did have the time to get the second opinion about what type of rads would be best for me. For those with more advanced bc like Hol, they want to get moving on that very quickly.
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Jazzy, Holeinone, Spookiesmom: thank you. The official second opinion may or may not change my treatment plan, but even knowing "Yes, this is the agreed upon treatment plan for my cancer." will (I think) alleviate my uncertainty and therefore my anxiety. I am, for the moment, premenopausal, despite having an ovary removed (and the other one's a bit shaky) so tamoxifen seems to be the preferred drug?
Sas-shatzi (and others): thank you for the links. I'd guessed that the nearest NCCN centers were at UofM and in Chicago, but nice to have a name for the one in Chicago. I'll talk this over with Dr. Surgeon tomorrow, and Dr. Medical Oncologist as soon as I can get hold of him...and then check with BCBM to see what they'll cover. No idea how much a second opinion would cost! Is it more than a bog-standard office consultation?
Off to pick up the trazodone my PCP kindly prescribed: stress-related insomnia is a bleep, and how I tend to respond to stress!
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Queen- second opinions are usually covered through insurance, but you should call your carrier to discuss your particular plan so you know in advance. If they don't, the office should be able to tell you any out of pocket cost. Most healthcare orgs where you do self pay will give you a discount (the "we don't have to deal with insurance" discount!)
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Queenie okay done now and proof read. Ironically, it will help more cancer patients locally than perhaps helping you. The big time affialiations and certifications at my SCCC are now going to be reviewed to make the system work better. I sent the post to my MO. I know his eyes will get big. They always do when I bring something to him that he didn't know.
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Queenie, if you haven't figured out already...Jazzy is a "sweet big sister" type counselor. Ms. Chevy is our homeopathic specialist. Ms. Sas is THE sex therapist with specialty in conventional drugs. She knows more about drugs than a pharmacist!!! ChattyPatty is her assistant. Golf and Ms. Spookie are your no nonsense advisers...straight forward without beating around the bush. And Ms. Smaarty....oh shoot when are we having lunch? Forgot to put it down on the calendar.
I am the absent-minded one who have difficulty putting thoughts into writing, so I try not to give any advice. Last time I did, I almost whacked our Marlana. Thanks to Ms Sas, Marlana is still here. One thing I do remember though is the crippling anxiety. I lost about 7-8 lbs within a few weeks after diagnosed....couldn't eat, sleep,or concentrate. I had never lost that much weight before.It was a dark time for me. Why do we have so much fear of the unknown? I wonder if it's because we want to be in control or if it's because the thought of being eternally separated from our love ones (especially our dependent little ones, inmy case).
Queenie, I can't imagine the stress/anxiety you are going through right now with your own full plate of trials and having to worry about your father's health. Stressand anxiety rob us of not only our health, but our sense of peace.
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lover, July 28. You're picking me up. Mark your calendar now. We also need to remember to get a pic this time!
I must be weird, the part I was most anxious about was the biopsy and the shot in the boob just prior to the bmx. That's what freaked me out. I thought I was handling everything pretty well. The only reason I know that I must have been worst then I thought was because my daughter got married the night before my surgery and I don't remember most of it! She got pics so I can see what we did. And its not the drug that makes you not remember things, because I don't take that. Crap, can't remember the name of the stuff! Starts with a V.
Versad!
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Versed, lovely drug.................hmmmmmmmm..........ZZZZZzzzzzzzzzzzzzzzz...............
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