Dis Breast Cancer Survivors Part IV - GAGWTA

[slg]

Sorry for sounding stupid, but what is GAGWTA?

 

[snappy]

It is an acronym for Greetings and good Wishes to All. I am not sure who coined it (was it Ann, ladies correct me here I am having a senior moment) but it serves the purpose of giving a shout out to everyone here, even if you can't directly comment to each and everyone's last post or so.

Sort of our own version of inclusion.

Does that make sense?

And you certainly don't sound stupid. It is like an inside deal, sort of like, don't bleed till your shot, which was DEFINITELY supplied by Ann, or more exactly, her DH, who is a hunter.

 

[snappy]

Ok, maybe someone here can help me, I am researching which laptop to get DD16. She will no longer be using her tablet computer after the end of May (school issued), and wants an Apple laptop.

She is not a greedy sort, would be happy with whatever is the most economical. I am leaning towards the mac air, but there is also a mac pro.

DH wants her to wait until the newer models come out at the end of the summer, but she uses her computer extensively with pictures, projects, even writing a book. I don't think it will work for her to use our desktop in the breakfast area next to the kitchen.

DD21 got the basic version laptop when she started at Tulane 4 years ago, and although she has brought it in for repairs, the apple care seemed to cover everything. DD21 is hard on everything, but the Apple laptop held up, unlike the PC laptop we bought her in high school.

Any thoughts ladies? She does not want an iPad, needs a true computer to do her multi media photography projects.

I hope I can delay her until we get back from our trip.

 

[smiley_face2]

Just wanted to stop by for a quick hello.....I see we have some new members-welcome.

I've been spending all my free time lately planning our upcoming vacation, which is growing by leaps and bounds! What started out as *just* an Alaska cruise has now morphed into an all out extravaganza. After getting back in port in Seattle we are going to take a train to Portland to visit my brother and family, then we are going to fly from Portland to Los Angeles and spend 4 nights at Disneyland. And if that wasn't crazy enough, we are then going to drive down to San Diego for three nights, then finally fly home. I am so incredibly excited!!! We have never done anything like this....but it seems like this is certainly the time, seeing as I know at the end of June I will be having another CT scan and will most likely find out why my tumor markers are up. So, before jumping back on the cancer coaster AGAIN, I'm gonna have one he'll of a good time!

I don't know anything about Disneyland....I feel like I've been cramming for finals or something - only this is fun! I'd sure love any helpful hints any of you may have.....Smiley, I think you are probably the resident expert here!

Sha, MaryAnn, Laurie, know your trips are coming up soon! Anybody else?

Has anybody heard from Lisa lately? I hope she is doing ok.

Sending lots of good wishes to all in treatment and playing the waiting game.

GAGWTA!!!!!

woohoo! sounds like an amazing adventure!! where are you staying at Disneyland? and when are you going? not a stalker, just want to help you plan! Lol...I have never been to WDW, but lot's of WDW vets come to the Disneyland part of the forum asking questions to plan their first time trips to DL, and the main piece of advice they are given is that they do not need to do things like make dinner reservations way ahead of time! Make sure you have park hopper tickets if you do not have a premium pass, so that you can go back and forth between Disneyland and California Adventure. The 2 parks are right across from each other and it's nice to be able to leave Disneyland when it starts to get busy, or to see a parade in DCA (Disney California Adventure) then hop back into DL (Disneyland) for fireworks or something. If you or a family member work for a corporation, you can see if they have a Club 33 membership and eat there!! that is a dream I know I will never have happen, but Blue Bayou is in the same building in New Orleans Square and is a must do because you are dining right inside The Pirates of the Carribean ride!! New Orleans Square is so amazing, I know you will love it!! I am so excited that one of you ladies will be visiting my side of the country!! Well, not my country...I am not a US citizen, but my side of the country..Lol.. I have adopted California as my soul state and wish we were wealthy enough to live down there for half the year!
I've got lot's of tips for you cheryl, what shows you should not miss, when the best times to go are etc.
San Diego is so beautiful! Sea World and the San Diego zoo are amazing!! even though we have not been there in so many years...there was just an advert on tv tonight for Sea World and I was thinking maybe we should fit in a visit there in our July trip. We have driven through Portland so many times and never stopped! well for gas or lunch but not to stay. It is a really pretty very green city! You are going to have such a good time!

 

[CherylDan]

Smiley, Wow!! That was sure a quick response! Thanks so much for offering your help.....lol, I'm gonna take you up on it! I've been reading post after post on the DL board, it's been very helpful. We will be there June 11 for four nights, staying at the Red Lion. I actually had a hard time finding someplace with availability, I hope that place isn't too bad of a walk? We will be leaving On the 15th, but will have to stay long long enough to check out the new Cars Land opening that day....I'm really excited to see that - crazy crowds and all.

It's all so different, and really an odd feeling to know WDW inside and out and then be clueless about DL...any suggestions you have would be most welcome! We for sure will get the park hoppers. Haven't made any dinner plans yet, but I have started to read over the menus.

Laurie, I don't know anything about apple laptops, but I sure do love my iPad!

 

[Sha]

Here is the link for the walk I am about to do in New Orleans!!!

Laurie you can sign up anytime, tie it to your FB page and get donations. I am going to do a different shirt maybe... will let you know otherwise will use the same from last year.

http://neworleans.info-komen.org/site/TR/RacefortheCure/MTR_NewOrleansAffiliate?px=5461550&pg=personal&fr_id=2640

 

[luvmarypoppins]

Good morning ladies

Laurie - no advice on the laptop. We have a hp laptop. It fits our needs.

Cheryl - wow that is an amazing, awesome adventure you are going on! I know smiley can give you lots of tips for sure. I know I have seen people post some of the food pictures from Disneyland and I think, gosh I wish DisneyWorld had things like that etc. The presentation looks so much better.

smiley - I know you have lot of great advice to share with Cheryl

Sha - I looked up my adrs. We will definetly be there that day. I originally made everything with the plans of seeing Davy Jones, then sadly he passed away. We will be at LeCellier at noon and then Chefs de France at 7 pm. So I know we will definetly be able to meet up sometime.

Well ds3 is trying to get over the disappointment. Lots of chocolate cake and ice cream consumed yest. for him.

Tomm. is my onc. visit. Oh joy. Now I really dont even feel like setting foot in that place after ds news yest.

I just made the reservations for the town car pick up at the airport in FL as dh hates the magical express. Also just booked the wheelchair. I like that it is already going to be at the resort waiting for us etc.

GAGWTA.

 

[slg]

Good morning ladies

Just wanted to let you know that I called the oncologist office and cried a little about my June 5 appointment and so they are fitting me in this Friday! Hurray! Hopefully I'll know when I can have my surgery, and if she thinks it can wait until after my trip (providing my breasts are still okay). She will have my ultrasounds and I can ask the pressing questions I need to ask. I'm relieved, but very scared.

I go to Vancouver tomorrow for my first high risk screening mammo and consult. Scared for that too.

Wish me luck.

 

[snappy]

Oh I am so glad, Sig, that the appointment was up. I tried to post a reply earlier when I saw your post in my email, but I guess it did not go through.

Will be thinking of you tomorrow, and hoping for the best on your mammograms.

Please let us know how you do.

Thanks for sharing the news that the June appointment got moved up.

 

[Sha]

Sig that is great that the appt is moved up!!!

Look forward to seeing you then LMP!!

 

[snappy]

Good luck with your visit, Mary Ann.

Glad you and Sha will meet up. I love F&G festival.

Hope your DS feels better about things.


Cheryl your extended trip sounds fantastic. You guys know how to travel.


Had our fourth dog training class tonight and I am dig tired. I have a lymphedrma massage at 10 am tomorrow. She chided me a bit over the phone today for not wearing my sleeve so I decided to try it. I was able to tolerate it for almost 10 hours. Not too bad.

GAGWTA!

 

[minijeanie]

[Had our fourth dog training class tonight and I am dig tired. I have a lymphedrma massage at 10 am tomorrow. She chided me a bit over the phone today for not wearing my sleeve so I decided to try it. I was able to tolerate it for almost 10 hours. Not too bad.

GAGWTA![/QUOTE]


Do you find the massages help you? I been diagnosed with lymphedema for over a year. I hardly wear the sleeve.. It is so cumbersome and I find that it turns my fingers colors. I wish they would find a way to put our nodes back so we can go on living. I have more problems in the trunk area and I don't know if there is any fix for that

 

[snappy]

I do think the lymphedrma massages help. My case is not advanced though. More of a prevention of full blown case I would say. My sleeve is the lightest version so that might make it easier to acclimate to the sleeve. I have slight trunk swelling too.

 

[minijeanie]

Sig and DisD:

I well up each time I read your posts. I feel for each of you. I am two years out from Masectomy and chemo. Wow it seems like it was yesterday. One of the best things I did was be a member on the following boards
www.breastcancer.org

This was a godsend to me. You meet with people who are going through the exact same thing as you at the exact time. We leaned on each other and offered advice. We discussed the disease, our lives, our kids,,,just everything. This disease is so overwhelming and it takes a village to get through your treatments. ALthough your friends and family are a godsend, it is other women who know exactly how you feel that help you thorugh each and every day.

I am not sure if your doctor is able to save your nipples but if I not, I know a fantastic tatoo artist...yes I said tatoo artist who does this for a living.
He actually works in connection with John Hopkins Hospital in MD.

SO at 57 yrs old I got my first tatoos

They are absolutely lifelike and made me feel so normal ..Okay enough of my wordy post..

I will follow both of your updates and wish you all the best

 

[luvmarypoppins]

slg - best of luck with your testing and visit.

Laurie - hope the massage helped you

minniejeannie - glad to see you post and say that you are doing well. I agree about the village and like minds. I at your tattoo story. We have a surgeon here who specializes in sparing surgery. (I have a different kind of cancer so I cant comment about her) but know that she is on our univ. hsp. breast cancer team. That is her specialty is says.

Lisa - how are you? Wishing you all the best. One day at a time. Hopefully we might be able to run into Meg on our trip. Will she be working anytime then??

Well I am back from the oncologist. She said all is well. She wants the endo to do some blood test which she wrote down for me. I am pretty sure the endo has ordered that blood test for me in July. I will look at my lab sheet and if its not there then I will call them.

The oncologists plan is to see me next June and I have to have the wonderful 2 hormone shots again and another blood test. She is always looking for the marker numbers. I made sure to schedule this after our annual May disney trip because sometimes those shots make you really sick etc. Dont want to deal with that and get ready for a trip etc. as my normal oncologistl time would be right around the trip time.

Poor ds is even more upset as 2 of his friends got into the program. One is a married lady, only takes 1 or 2 classes a semester but has perfect 4.0 and had 3 references from professors. One of them being the same professor that ds got for a reference.. She asked ds to go with her to the univ. and be an interpreter for her and explain it all to her. Um. I guess this girl does not know the concept of "Rubbing salt into a wound". Ds told her, no it would make me too upset. He thinks he might go only to ask his own question about his future options etc. Um, just wondering how can this girl even pass all this stuff etc when she does not seem to have an excellent command of the language. I heard her speak and that is fine. She also needs to complete 14 credits over the summer?? Ds has his all done. I hve read comments online that they only seemed to go by gpa as ds other friend also had a perfect 4.0. Sadly I feel this school wants perfect robotic nurses. Gee, too bad my ds is just an ordinary human Oh and he hates the scrub color for the nursing program. Total, total white. Dont know about the shoes though.

GAGWTA

 

[Sha]

My mom gets lymphedema massage... and matter of fact, I see the same person for my weekly messages and she is moving fluid with me, even though I do not have BC. Just from the daily grind, things sometimes stop moving she says. I can feel it though in some of my nodes in my arms.

 

[Sha]

we had to wear all white also... its just for school, get over it. I will never wear white scrubs again though. My shoes too had to be all white .... NO color on them. They will send you out of clinicals and you cant make them up. Thats pretty standard at any school of nursing from my understanding.

 

[snappy]

Sha, do you know if health insurance covers lymphedema massage? My therapist does the "Vodder method." She said the training she went through to learn it was very pricey.

Minijeannie, my therapist massages in the trunk area too. She also recommended wearing snug camisoles, not as snug as Spanx, but similar.

She told me to look at T.J. Maxx, and I found one.

This item too I did not like the first time I wore it all day to work. My stomach hurt like heck. I have worn it afterwards and was able to tolerate it. She told me today she wants me to wear it every day if possible.

My edema in the trunk was worse than in my arm today, maybe because I started wearing my sleeve.

Good thing she told me is that she is able to move the fluid around in my trunk, it is more of a problem if it can't be moved.

She also said that most of her clients are like Sha, do not have true lymphedema, but swelling from other things, trauma, after surgery, etc.

She also said she tells her clients if the one item related to self care they should take away from being treated for this is drinking tons of water. She also strongly recommends swimming as the pressure from the water helps the swelling immensely.

Interesting session today. I always learn alot. I am jsut chock full of questions, lol.

 

[minijeanie]

Snappy:

thanks for the info. There is a TJ Max right by my house. I am going to look for tighter camisoles. Sometimes I find that bras make the lymphdema worse. I called many massage therapists in my area and most do not take insurance. It is impossible for me to foot the bill myself. To go 3x a week is around $300. I support 2 kids, my 85 yr old mom and a granddaughter. My husband passed right before I was diagnosed so there is only one income. I wish I could figure out how to do the massage and teach my daughter...

I work two jobs to keep it going but I have managed to put away enough money to come back to wdw this august. My son is in army reserves so we can stay at military hotel which is extremely reasonable. Park tickets are super cheap as well. This will be the first trip back since my husband is gone. It will truly be a bittersweet trip and I am worried about the darn swelling in my arm. I guess I have to wear the sleeve during flying.



Nevertheless I am so looking forward to it.

 

[Sha]

Some insurances do Laurie....

my massage therapist does trunk also... she does breast area... she tells me not to wear wire underwire bra, and she knows when I do. I doubt that tighter is helping with the edema just for that reason. She has shown me a few things... if a therapist is willing, they will show you or maybe your daughter. My mom goes every other week. I go weekly (but I had had a car accident and just continued it). I think mom pays $70 for a visit with her.

there is a place here in Florida that has camisoles that area awesome especially post surgery if there is a mastectomy. It stretches so it can be pulled up or over the head and has a pouch to put the jp drains in. Am sure they ship that anywhere. Something to have before the surgery so can go home with it. (Just an FYI) Has little pouch to fill with polyfil so can have it appear there is breast tissue there.

Place is called: A Place for Her