Dis Breast Cancer Survivors Part III - GAGWTA!

[snappy]

Very sexy post, Laurie.

Just checking in to see what's going on. Having a good time, trying to R&R.

Gotta get back to the pool, LOL.

GAGWTA

Rub it in, will ya?

Seriously, have a lovely vacation! Be careful though, it flies by quickly!!

And that once sentence about my time line was a bit lengthym wasn't it?

I guess we need another visit from Pop Daddy to remind us about the wisdom of short posts.
LOL

 

[honugirl]

Lisa - Wow I would definetely go get another opinion. Remember my little blurb about my pcp and me having visions of scar telling simba to run away, yeah you should run away and get to another oipinion asap!!

Hi LMP! Thanks! I'm thinking I'm going to go for another opinion. Just not sure where yet. I may have a reason to go to an OB/GYN here, but I have a feeling that it would just come full circle and they'd refer me back to the breast center? Maybe the way to do it is to get in contact with my endo and have him order something? I'm just not sure.

Having a rare disease that no one understands really complicates things.

I had no idea that breast center was going to be like it was. I felt like I was getting cattle car treatment. The way they herded people in and out of there. I can't imagine with the amount of mammos they were looking at that they looked at it very closely.

Wow, if you do go on the trip you will be exposed to germs everywhere for sure. If you are flying, then on the plane and then stay away, far away from buffets for sure etc. If you go you better bring a gallon of hand sanitizer!! When we went to disney in dec. I was so dumb. I didnt know that a pet scan actually meant they already knew you had cancer and were just seeing where it was etc. I told the surgeon, whom I never saw again, that I was going on vacation and to call me the day I got back etc. LOL, they already knew I had cancer etc. Oh well, we had a great time for sure. Maybe it was better not knowing then. I dont know when we will ever get back too with my next surgery around the corner and wondering how long this graft will hold out. etc. You have to do what you feel is right for you etc. Where are you staying? Thinking if its a large resort etc. to get an ecv, wheelchair etc. If we do go I am letting dh push me in the wheelchair for sure. I aint going to be pushing myself by walking too much and end up feeling miserable.

We'd be staying at POP. This will be the only time this year I get to see my best Jersey bud. We have such a great time together. We're both complete Disney freaks!!!!!!!! I would get an ECV, I'd have to. I really don't have the energy for much more than a few hours of stuff during the day.

I want to go so bad, but then again, I don't want to do anything that would jeopardize the surgery which could mean that the next year I'd be back to good health and able to run and play at WDW like I did in the past.

Good news. Dh made a few phone calls yest. and finally got someone who knew what they were talking about. They said, yes they knew the ins. co denied the surgery, so the dr. had to um, work around/with the system and then put me in as an outpatient, knowing the whole time he was admitting me for 3 days. He then wrote down the complications to admit me, bad pain anesthesia and blood pressure stuff etc. So they also said I am now on the list as too many operations etc. so the ins. co. will scrutinize everything about me. So we will have to deal with this again for the next operation.

Sorry to hear about the insurance stuff. Yucky! But at least they're still getting your procedures done which is good.

Never a dull moment. Ds had to save someone again yest. at least not cpr, just pulling the kid to the side etc. Looks like its going to be a busy pool summer for him.

I am going to be perky today, no not perky as in the way our sista Alice is, I a going to be percocet perky today!! Oh, I hate this pain!!
\
GTAGWTA. Blessings to you all.

I'm amazed at your DS. When I was a lifeguard 100 years ago, back in the dark ages, I never had to jump in after anyone and I was very thankful for that. The worst I had to deal with was a code brown in the kiddie pool.

If I was closer I'd come over and hang with ya to take your mind off the pain.

LMP- No you know I was in withdrawal like an addict when I couldn't find you all. I am sorry you are in so much pain. We will have to call you "Perky-Poppins" your pills! I am glad to hear about your healthcare finding a way to get you in for the surgery. I had to argue with mine for a few days to get some of mine str8.

Ha ha ha Perky Poppins Poppin' Pills. It sounds like a crazy tongue twister!


Honu girl- 2nd opinion for sure!!!! No way with your sypmtoms should they be that passive.

Thanks! That's what I was thinking. I felt like the lady was pained to have to deal with me. The worst part was being dumped at the end like yesterday's garbage. I didn't get to see my films, I wasn't told to follow up or nothing. Just dropped. It was so weird.

As far as Disney, thinking selfishly I want you to come so that we can "pimp" walk through the restaurant door. But I really want you to be careful. I work at a hospital and I have to remind myself constantly not to rub, touch, scratch my eyes, nose and mouth. I carry antibacterial in my pocket at work. After I touch a elevator button out comes the anti! I don't want anything to jeopardize your upcoming surgery. But I really want you to come. Thats a hard one to make!!

That would be cool to pimp walk through the restaurant together. Now you know why I'm having such a hard time with this!!!!!!!! Want to go, but don't want to be sick. Ugh. Stupid tumor. If the stupid tumor wasn't here I wouldn't have to make a choice, I'd just go.

So my 2nd job is going ok. It certainly helps with paying off Disney. The owner of the company is a seagull manager. What's a seagull manager? A manager that squawks and makes a whole lot of noise, craps on everything and then leaves. That is her to a captiol "T". She comes in yells and screams, changes everything and messes it up and then collects her check from the client and leaves.

Just checking in with everyone. GAGWTA!!!

I've never heard of a seagull manager before. That's funny! I like it!

I agree that traveling with a compromised immune system is tricky. September also tends to be very hot humid and comfortable (just like home sweet home).

Not sure if honugirl would be very comfortable.

Really, I'm a southern girl at heart, even though I was born a Yankee. I tolerate the heat better than I do the cold. Besides we've got water parks and more on our thing so if it gets to hot, we just go over to TL and cruise the lazy river.


Honugirl, what horrible attitudes you were subjected to. I understand what you mean about self-referral. Can you try and see your Gyn doc and get his opinion and referral? That is the route I went, but my time line was screening mammorgram ordered and results sent back to gyn doc, gyn doc calls and has me schedule the diagnostic mammogram, the results of said diagnostic mammogram sent back to gyn doc, gyn doc calls me and refers me to a particular breast surgeon who I went to see with all the films (along with films from a number of prior years). With an older person like me, there is so many years of mammograms that there is a history they can clearly see the changes and realize a biopsy is in order.

With a younger person things are not so clear cut. However, there is no excuse for the shabby way you were treated. I would pursue this further with a second opinion
as Candy and LMP both said above, perhaps if you see your gyn first he/she could guide you?

The last thing you want is to let anyone make you doubt yourself and your sense that you need to check this out. You know your own body more than anyone.

Thanks Snappy! I may have to wait and see a GYN back up where I spend the rest of my time. If I see one down here, I may end up coming full circle back to where I went yesterday. But the advantage of seeing someone down here is maybe someone might understand my underlying endocrine problem, which would be a plus. I think I should do more research. I just can't let this go because I really feel like something bigger is going on. My spidey sense has never led me wrong.


No bingo stories this week. We had a session Sunday and the next one is Saturday. Our first check from the video machine owner and operator was a whopping $42.67, of which we had to pay 45% in rent to the hall owner. So we netted $22 before we paid our bingo workers and purchased our bingo paper. Not exactly a lucrative endeavor!!

Hopefully today's check will be better. I am working from home trying to do budgets for our next fiscal year with less in funding sources.

Hence, here I am on the computer talking to you guys. Somehow this is more fun than crunching numbers? Who woulda thunk it????????

Also, waiting for my new mattress set to be delivered. I think we spent our travel funds for the next couple of WDW trips on hopefully getting better sleep?

GAGWTA!!!!

Well, keep at the Bingo. It'll get better. Ooooh, new mattress! Nice, very nice! Good sleep is very important.

I'm pretty excited. Haven't been to Vegas since I was a child...I know much has changed. There is a lot to do. I have a huge list of ideas and we're staying right on the strip, so I'll be close to a lot. Maybe I'll walk so much that I lose a few pounds? I've seen the Cirque show at Disney and some on tv. They are one of DH's favorites - I like them too. We certainly hope to take in at least one. There are actually several to choose from.



I know. I'm terrible. And that trip isn't until January, so you've got a long wait. If you can't stand it, send me a PM and I'll tell you. Otherwise I'll post about it when we get home from our trip. How's that?

Have fun in Vegas, although I don't know if anyone actually loses weight there with all the buffets...

 

[Aliceacc]

Snappy, Southwest is running a Friends Fly and Play Free promo-- would it make Disney more do-able??

http://www.southwestvacations.com/specials/detail.asp?xmlFile=FS0428&CMPID=AFC-CJA&Referrer=S27

Disney has been the best therapy there is for the past year or so.

gotta run; I've finallyl gotten some ambition and I'm doing school work for September

 

[Sha]

Snappy, Southwest is running a Friends Fly and Play Free promo-- would it make Disney more do-able??

http://www.southwestvacations.com/specials/detail.asp?xmlFile=FS0428&CMPID=AFC-CJA&Referrer=S27

Disney has been the best therapy there is for the past year or so.

gotta run; I've finallyl gotten some ambition and I'm doing school work for September

wonder if it works for Disneyland too?

 

[snappy]

I don't know about Disneyland, but I see a deal I may just be able to talk DH into.

Alice Alice Alice what can I say. I am getting nervous and excited. Thanks for sending me the Southwest vacations link. I actually see it on my ding notification that showed up today.

By the way the mattress delivery thing was a 2 hour ordeal. I guess I am kind of a picky consumer. The box springs was more than an inch and a half too narrow for my queen size bed frame. I had visions of either my DH or myself conking our lovely tenderhearted shins repeatedly for the next 20 years on the metal that juts out.

I spent a bunch of time first with the salesman, then the business owner of the mattress retailer, eventually with the customer service guru at the mattress manufacturer, basically saying I am not spending XX amount of (alot in my book) for a box spring that is supposed to be 60 inches wide.

The delivery guy actually agreed with me, he said it happens all the time with this particular manufacturer, he actually went and got a tape measurer from the truck to confirm the problem (I thought it might have been my bedframe we have that same with the bedroom set purchased from the same furniture store back in the 80's).

The owner and the customer rep for the manufacturer played dumb which really irked me, I finally said this is unacceptable I am not spending this kind of money for a set I will never be happy with, I guess I should look at another brand.

Suddenly the customer rep offered to custom make me a box springs that actually fits a queen size 60 inch wide frame.

Halleluah!!

I felt like the wicked witch of the west but I got what I wanted.

They had already gotten my goat when after trying many mattresses during a several hour shopping trip, DD13 settled on one type, the salesman supposedly checked his stock, specified delivery, etc, only to call several days later to say so sorry that manufacturr does not even make twin size beds.

So another trip over there the next weekend for DD13 to pick out another set.

Then, they wanted to charge me $25 today to take away the old mattress, having never told me previously.

I almost came unglued.

Well the undersized box spring that according to the delivery guy happens quite often sent me over the edge.

Anyway, very nice mattress, I am going to like it I know.

Sorry this is so long.

 

[lookingforward]

I'm pretty excited. Haven't been to Vegas since I was a child...I know much has changed. There is a lot to do. I have a huge list of ideas and we're staying right on the strip, so I'll be close to a lot. Maybe I'll walk so much that I lose a few pounds? I've seen the Cirque show at Disney and some on tv. They are one of DH's favorites - I like them too. We certainly hope to take in at least one. There are actually several to choose from.



I know. I'm terrible. And that trip isn't until January, so you've got a long wait. If you can't stand it, send me a PM and I'll tell you. Otherwise I'll post about it when we get home from our trip. How's that?

I am excited for you! I have never been to Vegas but have heard that Bette Midler is really great show. And you can't lose with Cirque ! ANd don't worry January wil be here soon enough!

 

[Aliceacc]

I saw Bette Middler at Jones Beach a million years ago (either just before or just after she released The Rose.) She puts on a wonderful show!!

 

[honugirl]

I'm trying to put together a note to the provider I saw yesterday regarding the appointment, here's what I have so far.

Dear Provider X:

I'm going to be honest here, I walked away from yesterday's appointment feeling very disappointed. We did the mammogram and the ultrasound which I was grateful for, but leaving there with no direction or possible explanation for the pain really left me feeling deflated. I understand it's busy there. It really would have been nice to close out the appointment with a brief look at my scans and a directions on what to do if the pain continues.


What else should I include? Should I ask for a referral to someone else? I don't know what else to say, but I feel like I should say something.

Thanks.

 

[snappy]

A thought comes to mind that who specifically you address your correspondence to might be important.

Is there a way to find out if there is a patient advocate on their staff?

I believe I would CC your endocrinologist. Who else follows you closely?

 

[honugirl]

A thought comes to mind that who specifically you address your correspondence to might be important.

Is there a way to find out if there is a patient advocate on their staff?

I believe I would CC your endocrinologist. Who else follows you closely?

Hey Snappy! Thanks!

It will be going to the specific provider. They have a program that sends messages directly to the provider of your choosing, kind of like email. I didn't include the name here just 'cause.

Ooh, a patient advocate is a good idea. Like that. I think OHSU does have patient advocates on staff.

I can't CC my endo on this because he's at another institution. I can send him an email about what happened though. That's a good idea too. There really isn't anyone else that follows me closely.

Good ideas! Thanks! Keep 'em coming! I think I really need to say something, just not quite sure how to do it without alienating anyone.

 

[snappy]

I saw Bette Middler at Jones Beach a million years ago (either just before or just after she released The Rose.) She puts on a wonderful show!!

You lucky duck. I think she is DIVINE.

 

[luvmarypoppins]

Good morning sistas. I figure I would check in early before I may have to deal with the pain issues of the day, so far so good though.

Lisa - I don't know what to say about your letter. I actually have never complained to a health care professional in a letter. I figure I just dont want to burn all my bridges since they network with others and I dont want to get a rep, but I do tell people verbally what doctors not to go to, like the one surgeon who almost killed me 11 years ago. I would say make it professional and to be point etc. I like the patient advocate thing too. Maybe Linda or Sha can give you some good advice too. Also, I saw you commmented back to the lady on the other thread. She was so impressed and thankful to you. Because of you her friends ds got diagnosed with Cushings, way to go sista and it just further goes along with what you say about your "ihstincts".

Alice - guess what, my ds won tickets to see Jason Mraz (sp.?)at Jones Beach from some radio station. Now he doesnt know how he will get there. Hmm, I guess he didnt think of that first. Leave it to the 17yo, lol!

Well ds 21 has a cold. I hope he doesnt give it to ds19 before the surgery and I am going with ds19 for the pre op stuff tomm. I am sure the np will not believe I am there again etc. And I hope even ds does not get the nasty np we had last time. I honestly dont want the cold either. I dont think I could fight it well right now after the surgery. I remember what happend last time. I was miserable for about a week.

Guess what, Alyssas story was on with Katie Couric when I was in the hospital. Oh gheesh. I cant believe it. I am going to see if her mom has a link for me etc.

GTAGWTA. Blessings to you all.

 

[Candy30]

Oh and thank you Laurie for helping me find my way. I was very frustrated when I couldn't find our thread anywhere. It was like you vanished.

I feel you girl!!! I was going crazy looking. Sent out an SOS

Rub it in, will ya?

Seriously, have a lovely vacation! Be careful though, it flies by quickly!!
LOL

I was going to say the same thing!!! Rub it in! But enjoy yourself!!! We are just wishing we were there.

Snappy, Southwest is running a Friends Fly and Play Free promo-- would it make Disney more do-able??

http://www.southwestvacations.com/specials/detail.asp?xmlFile=FS0428&CMPID=AFC-CJA&Referrer=S27

Disney has been the best therapy there is for the past year or so.

gotta run; I've finallyl gotten some ambition and I'm doing school work for September

I have my therapy appointment set! I can't wait to go! School...I just started buying school clothes for my daughter. I can't believe I have to start that already. Fortunately she is in uniform.

I am excited for you! I have never been to Vegas but have heard that Bette Midler is really great show. And you can't lose with Cirque ! ANd don't worry January wil be here soon enough!

I have never been to Vegas either. I want to go to shop and see the shows. I don't gamble but I heard there is so much to do there!!! MP enjoy it

A thought comes to mind that who specifically you address your correspondence to might be important.

Is there a way to find out if there is a patient advocate on their staff?

I agree with this 100%. I would put the date and time of your appt on there. Also mention that you expected more output and feedback from such a specialized healthcare facility. ( It was a breast care center correct)

Good morning sistas. I figure I would check in early before I may have to deal with the pain issues of the day, so far so good though.

Awww I hope you are feeling better

Well ds 21 has a cold. I hope he doesnt give it to ds19 before the surgery and I am going with ds19 for the pre op stuff tomm. I am sure the np will not believe I am there again etc. And I hope even ds does not get the nasty np we had last time. I honestly dont want the cold either. I dont think I could fight it well right now after the surgery. I remember what happend last time. I was miserable for about a week.

I was thinking that I hope you don't get the cold too. Be careful! I can whip my anti out of my pocket for ya whenever you need it!!!!

Everyone knows I have it in my family. We were at a picnic and all of the family sent their kids over to get anti bacterial sanitizer from me. Now they call me ANTI instead of Auntie!

So I have a daughter that I adopted with my heart about 9 years ago. She lived in a foster care home and her mother is living but allow the boyfriend to verbally abuse and hit her. She is such a beautiful girl inside and out. Anyway she has been dating a guy for about 2years and HE called me to tell me that he plans on asking her to marry him. He was in Iraq and is now a state trooper in WV. I am so torn. I am happy for her but I don't want her to leave!!!....I am anxious about her leaving. It is about 3 hours away. I have spent time with her Bo and like him but just so anxious about her being far away. (She's had a past with abusive boyfriends and where we had to get involved) No complaints on the current one just

 

[snappy]

Sorry, Candy about the possibility of your sweet daughter of the heart.

Weddings are turning points.

I am a little nervous about my DD19 being so serious with her college classmate from London. They are too young and too much ahead of them right now for marriage, but I feel those apron strings being stretched really far right now.

I am also feeing my age. Not fair that all this has to happen at the same exact time.


I really am lucky just to be here, so I have to roll with the punches, right. Noone understands that like you strong ladies on this thread. I never thought I would have so many great online friends to commiserate with. I feel lucky.

ssshhh! don't tell my DH I said that.

 

[Aliceacc]

I am SO EXCITED!!!

I had my reconstruction surgery last Wednesday, and a psychotic episode when I peeked under the bandages the next day.


But today I had my followup visit... and I have a matching set of breasts!!! Yes, they're smaller and still not "pretty" after surgery. But they match!!!

it is SO GREAT to feel whole again!!!

Tomorrow I'm going out to get fitted for a bra, then buy some bras and a bathing suit for my Disney trip!!!

 

[Sha]

Update on Miss Lee. My mom called her today and she had gone to her doctor this week to find out when to schedule surgery. He is gone until the end of July............. hmmm

Therefore, she is getting another round of chemo, so not to allow any return growth while waiting and then will see him after that.

Mom didn't say anything about her spirits, but am thinking they are running about the same. She is fiesty but as with anyone, has some down days.

 

[snappy]

Alice, I told you it takes time for them to "gel". It is so good to hear yoy so up. Thanks for posting.

Sha, thanks for the update about Miss Lee.

Feisty is good.

 

[Sha]

I am SO EXCITED!!!

I had my reconstruction surgery last Wednesday, and a psychotic episode when I peeked under the bandages the next day.


But today I had my followup visit... and I have a matching set of breasts!!! Yes, they're smaller and still not "pretty" after surgery. But they match!!!

it is SO GREAT to feel whole again!!!

Tomorrow I'm going out to get fitted for a bra, then buy some bras and a bathing suit for my Disney trip!!!

Outstanding! Am so happy for you! I even read the post to a coworker!

Yes, Snappy, Fiesty is good...

Candy, I pray that Bo is what your adopted daughter deserves. Its nice that he told you he was going to ask. That shows that they both have respect for you. And I am sure, she knows that she always has a place to come to if something went wrong. When a friend got married earlier this year, she was told by a friend, when she moved far away from her family and friends, that if she felt threatened etc, they would get her home immediately. Luckily, she is married to a wonderful man.

 

[Candy30]

Sorry, Candy about the possibility of your sweet daughter of the heart.

Weddings are turning points.

I am a little nervous about my DD19 being so serious with her college classmate from London. They are too young and too much ahead of them right now for marriage, but I feel those apron strings being stretched really far right now.

I really am lucky just to be here, so I have to roll with the punches, right. Noone understands that like you strong ladies on this thread. I never thought I would have so many great online friends to commiserate with. I feel lucky.

ssshhh! don't tell my DH I said that.

I know. I know. I wish my apron string were made of that springy sticky stuff so it can S-T-R-E-T-C-H!!!! I know she knows she has a place to come to and that we love her. It is at the point where if we don't hear from her, my kids will call and leave her a message!!

Her fathers side of the family at first welcomed her but then became jealous of her and fell out. Her Dad's current wife does not like her so she doesn't get to spend time with him. Here she thought she found her family and got hurt again. Given what she has been through, she always is independent. I am going to miss here.

I am SO EXCITED!!!

I had my reconstruction surgery last Wednesday, and a psychotic episode when I peeked under the bandages the next day.
But today I had my followup visit... and I have a matching set of breasts!!! Yes, they're smaller and still not "pretty" after surgery. But they match!!!
it is SO GREAT to feel whole again!!!
Tomorrow I'm going out to get fitted for a bra, then buy some bras and a bathing suit for my Disney trip!!!

WOOOOHOOOO! Shake what ya mama gave ya Alice! Well maybe not yet but sooon!!!!!!!!! I am so happy for you! When are you going to Disney. You might have mentioned it before but I didn't see it.

Outstanding! Am so happy for you! I even read the post to a coworker!

Yes, Snappy, Fiesty is good...

Candy, I pray that Bo is what your adopted daughter deserves. Its nice that he told you he was going to ask. That shows that they both have respect for you. And I am sure, she knows that she always has a place to come to if something went wrong. When a friend got married earlier this year, she was told by a friend, when she moved far away from her family and friends, that if she felt threatened etc, they would get her home immediately. Luckily, she is married to a wonderful man.

I think that is what I fear the most is that I can't get to her in less than 1/2 hour and although I have met her Bo and some of his family, I just don't really KNOW him. His Mom and Dad are very nice and wonderful.I just love her and have seen her grow so much. I guess I don't want to miss out on anything. I guess I need to grow up huh?!?!?!

LMP, Honugirl,LF, MP Hi Ladies. GAGWTA

 

[omghidanielle]

Hi all, I have a very very strange question to ask

My Aunt (66 years old) has been diagnosed with breast cancer. She had a lumpectomy, which was not successful. She is starting radiation and chemotherapy soon, and is very very insistent that they no longer offer massectomys.

Is this at all true? I certainly do not believe it at all.

She is acting very...ummm....odd about this? She initially refused to have the breast removed because 'I need to wear a bathingsuit'.

This is a very sad time for my entire family, and I can't help but be angry at her that she isn't taking this as seriously as she should. I do understand that it is her body, and she is very well entitled to make her own decisions, but I feel like something just isn't 'right' about most of the information she relays to us about her condition.

I just cannot believe that Doctors and Hospitals just 'dont do' massectomys on patients who have very aggressive cancer, and would put them through mass doses of therapies as opposed to trying to nab it all at once and hopefully solve the problem in that way.

Maybe she's just telling us that because it's spread and there's no point in removing it? I just don't know...