Dis Breast Cancer Survivors Part II -GAGWTA!

[snappy]

Thanks for the links, Sha.

Made me think also to look up when the New Orleans RFTC will be held, a question Laura asked here.

The N.O. date is Oct 19th, the Baton Rouge date is March 8th. I have not been in the New Orleans race since we moved here before going on this journey.

I am sure I'll do the March RFTC.

 

[Sha]

Question for you lovely ladies:

Share how long you and your family have been going on trips to WDW. Tell what got you started going and what keeps you going back. Where do you most like to stay, which is your favorite park and attraction and why? If money was no object, where would you stay? What time of year do you most like to go? Who do you like most to visit with? What is the length of your dream trip?

My parents were how I first started going to WDW, being my first trip was when I was 4. That first taste and watching Disney every Sunday night... well, I was loving it. I keep going back because of that love, the memories and I see something different every time I go. I have 2 older sisters, who just dont get it like I do. I didnt start going a lot until I moved to North Florida (grew up in South Florida).

I am trying to stay at least once at each of the resorts, and love to stay at the GF, Contemp, PORS, and being a DVC owner... I love those too! (even living as close as I do).

I love all the parks equally, but am very much in love with the MK and I want to try and see Wishes everytime I go.

No object??? hmmm the Cinderella Suite?? lol probably a 1 bedroom DVC, so can have some comforts of home, or at the GF or Contemp.

Anytime of year is good for me, though Christmas is a favorite. With the lights, and festiveness, decorations and the Candlelight Processional

I have made some great friends here on the Disboards (singles thread), and we get together every so often. I have had a lot of fun with them. But I enjoy to go with anyone really.

I dont know about length of time. I have stayed 5 days as the most amount of time... maybe stay a week could be nice...

Thanks Snappy

 

[snappy]

Thanks for the perspective of someone living in Florida.

I like staying longer since travel is such a hassle and $$$ to fly, even though we are only a bit over 600 miles away.

We have driven at least 6 times, flown the remainder. Out of Baton Rouge there is not a single non-stop flight, you have to go in to New Orleans and fly Southwest to fly non-stop to Orlando. We have done this many times but it is still a hassle, you never know how long it will take to get to New Orleans, I can't tell you the number of times we have been at a dead stop on the bridge over the spillway for long periods of time. It is better than right after Katrina but it is still unpredictable. You have to allow extra time time. I also can't personally drive over that bridge due to my bridge issues, so DH has to drive. It makes things even more complicated.

We lost in the tournament so we are out.

We had some bad refs this time and very unsportsmanlike contact on the part of the opponents. We have 6 girls on our team, we are playing all boy teams so we are at a disadvantage. I was surprised how much pushing the opposing boys did to our girls. They were crafty about it though, even when our parents pointed it out, the refs were clueless. Our players were frustrated but took it well. They were a lot more graceful about it.

 

[Pea-n-Me]

Fun assignment, I will do mine and read yours more in depth later.

Tonight, I need a favor. My patient Jack needs prayers. I would appreciate it from anyone who's inclined. Please keep him in your thoughts, he needs some friends.

Thanks

 

[MerryPoppins]

I've taken on extra prayer time during Lent and Jack is now on my list. Prayers can't ever hurt, so I'll do my part.

Now that you mention it...I have a friend whose MIL has pancreatic cancer. She just found out and the family is heartbroken. Thankfully her son is a doctor. That never hurts. At least they have connections and he understands all the lingo. If you feel so inclined add Jan and her family to your prayers.

That's all I have time for at this moment. GAGWTA!

 

[MerryPoppins]

Really quick...I just wanted to share with you my lenten discipline. Several times a day I'm praying using my hand to remember my prayers. Ever heard of this method? You can read more about it here.

http://www.cofe.anglican.org/worship/learnpray/

This was originally designed to use with children, but I find it helpful to use several times a day, as my hand is always with me. It's obviously English, but you can easily make the changes. Here is a brief description:

thumb
this is the strongest digit on your hand. Give thanks for all the strong things in your life, like home and family, relationships that support and sustain you.

index finger
this is the pointing finger. Pray for all those people and things in your life who guide and help you. Friends, teachers, doctors, nurses, emergency services and so on.

middle finger
this is the tallest finger. Pray for all the important people who have power in the world, like world leaders and their governments, members of parliament and local councillors, the Royal Family, other world leaders and their governments.

ring finger
this is the weakest finger on your hand. It can not do much by itself. Remember the poor, the weak, the helpless, the hungry, the sick, the ill and the bereaved.

little finger
this is the smallest and the last finger on your hand. Pray for yourself.

 

[Sha]

Really quick...I just wanted to share with you my lenten discipline. Several times a day I'm praying using my hand to remember my prayers. Ever heard of this method? You can read more about it here.

http://www.cofe.anglican.org/worship/learnpray/

This was originally designed to use with children, but I find it helpful to use several times a day, as my hand is always with me. It's obviously English, but you can easily make the changes. Here is a brief description:

thumb
this is the strongest digit on your hand. Give thanks for all the strong things in your life, like home and family, relationships that support and sustain you.

index finger
this is the pointing finger. Pray for all those people and things in your life who guide and help you. Friends, teachers, doctors, nurses, emergency services and so on.

middle finger
this is the tallest finger. Pray for all the important people who have power in the world, like world leaders and their governments, members of parliament and local councillors, the Royal Family, other world leaders and their governments.

ring finger
this is the weakest finger on your hand. It can not do much by itself. Remember the poor, the weak, the helpless, the hungry, the sick, the ill and the bereaved.

little finger
this is the smallest and the last finger on your hand. Pray for yourself.

Thanks for sharing that Merry... I was just telling a friend of mine a few days ago that I have been easily distracted in my prayers lately.... I think that will help me with focusing. I will do my best for all that have been asked to be included in prayers

 

[NHAnn]

Ahh, Disney memories! My first trip was Feb school vaca week, 1993. We stayed at Dixie Landings. An absolutley magical, glitch free trip, I was instantly addicted! A few years later we did another amazing onsite stay at Wilderness Lodge, that is DH's favorite as far as theming. I always wanted to try to stay at every on-property resort -but when my youngest stepson (a couple yrs older than DD) was still travelling with us it was more economical to get suite/condo type arrangements offsite than on-property, so we did that a couple of times in the late 90's. In 2000 I ended up through the DISboards discovering the Swan/Dolphin and with some special discounts there and Starwood Amex points - we have been staying there since....LOVE that location !! If money was no object, I'd go a few times a year and stay at every resort til I'd tried them all!! Favorite Park is Epcot to just "stroll"...but as others have said MK holds the magic...my "do not miss" is Wishes, (and Illuminations at Epcot). Too hard to name favorites...

Laura....my DD is getting her degree in Communication Sciences & Disorders (basically would need a master's in Speech Language Pathology to practice in that field) and she also has a minor in Animal Sciences thanks to the heavy pre-vet science load her first 2 years. She is just not sure what direction she wants...is tired of the grind of school yet not sure how/what field to "get a job". SHe also has a strong interest in and has done very well working at the Admissions Dept at her university, has a couple of volunteer roles (student rep, student advisory board member) and a paying job a few hours a week at their front desk...so has toyed with a the thought of a master's in education administration.... I think she's having a hard time with the concept of being open to careers/jobs/roles that would utilize strengths/talents ....it's almost as though if you majored in X your options are limited to Y and Z or grad school, or I can't be in field A because I didn't major in B or C. She is smart with great grades, she is an excellent public speaker...she has given presentations to hundreds of prospective students/parents and the Admissions Director has said hers was THE best student rep presentation he's ever seen. So she thinks of maybe a path along those lines in college admissions, while I try to encourage her to think of jobs/fields that may not neccesarily be in college admissions/admin but might utilize those strengths---being able to think on your feet and speak to groups is a huge asset in so many fields! Personally I've alwayss thought she'd make a fantastic broadcast journalist or an attorney...but she has no interest...
Anyway....the Peace Corps app seems to be on the back burner, and she is now interviewing for a summer position at a small summer camp in Vermont for chldren, most of whom are challenged though high functioning, with Asperger's and the like. They need an Activities Specialist for their swimming program and with her lifeguarding background and her degree, I think she is a shoe-in. Her first phone interview went extremely well. The pay is a pittance but she'd be there for 8-9 weeks this summer. Whatver...she'll still have to face reality when she gets back but maybe it will help focus her thinking. My biggest worry about the whole graduation thing is health insurance....I see huge COBRA bills in our future because while I can say "you're on your own" for your car expenses and if you live here you will paya nominal rent at least, I just cannot let her go uninsured.

Well that was WAY too long-winded!!!


We had a few more inches of snow last night and expect squalls today containing a couple of more along with high wind. I NEED SPRING!!!!

Thinking of you all!! GAGWTA!!!

 

[snappy]

Great memories, Ann.

I loved the hand prayer, Merry.

What great visuals to prayer. Thank you for posting that. Very timely too during Lent.

I'll say special prayers for Jack and Jan and her family at mass today. jack is lucky you are taking care of him, Linda.

 

[BeadyLady]

We are on page 2 now, beadylady, I hope you post soon, I am concerned about your earlier post and what answers you received today.

Sorry if I'm blurting in - but need to get this off my chest. Get it?

sorry about the wait. This is a long week.

On Monday I went to the PS dude, asking if surgery will rid of pain, could not get an answer, but all this info about tissue expanders and return visits to the PS for expansion. Uh? I want no pain not really need new b**b. I asked him about cording - no clue, he has been a PS for years, how does he not know about cording? He suggest a second opinion from his co-PS, sure! another idea would be good. I & DH go back in the afternoon, this PS doesn't even listen to my question on pain, but says the tissue expander would not work, but maybe the dorsel flap would. Proceeds to tell me if then limits movement of the right arm, leaves oozing hole for a couple weeks and requires drains in back and front. uh? Then it would be three surgeries, one for expander under flap, then those visits, then the surgery for the insert, and then the third surgery for reduction on the left. uh? Where is the part where you tell me the about the pain? Well, there is no guaranty that the pain will be gone. So, rather than listen to me - I think he was listening to cha-ching. I did ask how many procedures like this had he done - he had assisted in 80. How many have you done? None. and you want me to be your guinea pig? And the pain might stay?

Told them on Weds - no thanks. Then the Main PS wanted to talk to me - try and talk me into this - had his assistant call me. Still no thanks!

I saw the pain Dr on Weds (after whining whining whining) and got a cortisone shot for the elbow pain (ain't working as of this moment) and a NEW drug to try. I've got a pain patch on the elbow. Use of the computer - makes it worse. Ergo the lack of posting.

I know I know - see another Dr. in a bigger city.

GAGWTA! You are all in my thoughts!

 

[snappy]

Glad you posted, Beadylady. I am sorry that the P.S.'s you saw seemed to not address your real concerns. I am betting the majority of their practice is NOT reconstruction, perhaps more the cosmetic procedures. From the research I did the past couple of years, that is where the PS's make their money, there are no insurance constraints as is the case with reconstruction cases. However, there are docs out there who specialize in reconstruction, they are not the ones that are as big time money hungry, they are more in it to perfect the reconstruction techniques. I believe they are a rare breed. But their training is very specialized and usually they concentrate on one reconstruction technique.

It does sound like the docs did not address your concerns except for the no guarantee statement. Big help that was. Actually, I doubt you will get any doctor to give a guarantee relative to the pain, but I don't remember from your posts that you are seeking that guarantee, only the possibility of relief.

I will tell you that I was very daunted by reading and signing off the range of complications that can accompany reconstruction. It is WAY beyond what you sign off for when going under anesthesia for surgery.

I remember pages of possible complications, each one of which I had to sign. Now this is to cover all situations. I was lucky, no complications, and I was able to get off the oral pain meds in 4 days. Mine was also one surgery, the free tram surgery, reduction all at once (I don't count the nipple creation a true surgery since I was awake throughout). Multiple surgeries would have more than I would have wished to undertake, although the free tram abdominal incision was certainly more painful and temporarily debilitating than I realized it would be.

My impression is that many women aren't satisfied with the shape or size or whatever and have lipo to achieve a closer version of their idea of perfection. That was the LAST thing I wanted, I consider lipo more surgery.

I am wondering if there are doctors out there who specialize in correcting the cording thing, maybe this is not a PS issue?

I surely hope the new meds kick in soon.

Don't give up, there has to be an answer to this.

You too are in my prayers today.

 

[BeadyLady]

Thank you Snappy!
I've added another med to today so might not be making much sense soon. I feel like the only PMPS person in the Berkshires, so not much is known or helpful about this. http://www.cancerlynx.com/mastectomypain.html is one explanation.

But! I won't stop knitting! and have remembered how to crochet granny squares. oh oh! I asked for the 8x8 squares - and my Knit Club came through with a good 30 squares! How cool is that? My DM even created one with a pink ribbon on it - I should take a picture!

If I could laugh - then the pain will abate. So I gotta find a funny movie to watch.

thanks for the support!

 

[Amy]

I just found the new GAGWTA thread, so I wanted to post and say hi! I'm a GAGWTA sister from way back, I'm actually coming up on the 6th anniv. of when my lump was found on my mammogram (Feb. 27, 2002). I had a lumpectomy, chemo and radiation, did 2+ years of Tamoxifen followed by 2+ years of Arimidex (with some Lupron thrown in), finished Arimidex and Lupron this past August. So far I'm doing great (knock on wood)! Go back to see my oncologist this Thurs. for my regular 6-mo checkup.

I don't post here very often any more, but I do read the thread to see how you all are doing. You're always in my thoughts and prayers. I'm inspired by your fight against this terrible disease and the support that you give each other. Best wishes to all of you for good health!

(P.S. - if anyone knows the tag fairy, do you think you could get her to fix the typo in my "GAGWTA" tag?)

 

[CherylDan]

GAGWTA!

I too just found the new thread and wanted to say hi....haven't posted in ages. I have a lot of catching up to do, but first I have to say congratulations to astarr! What a beautiful baby!

I've been doing great, my one year mark was last November. Energy is back to normal, have had two haircuts now and I'm feeling like my old self - even the hot flashes caused from the tamoxifen are under control with the help of an anti-depressent. Sounded weird to me when my onc suggested it, but it's working great! I've been super busy lately - I think I'm trying to make up for last year.

I'm not sure what made me go looking for the thread tonight, but I'm glad I did. LOL....at first I thought I'd never find it! Then when I found it, I seen that it was locked. I sure was glad there was a nice trail leading to GAGWTA Part 2.

 

[Pea-n-Me]

Hey Guys Nice to see all of you and GAGWTA!

Thank you for the prayers for my new friend. He joined our survivor ranks the other day and doesn't have a lot of support systems in place. Will also keep your friends in my prayers.

 

[Pea-n-Me]

I haven't read through all of your stories yet but I will (I've been super busy since I got back from my trip). I'll do a quick one.

DH and I had never been to WDW. No desire whatsoever, actually. Family members went on their honeymoon and we thought that was pretty silly. We figured, however, we'd take our own kids at some point. When they were 3yo a coworker took a family trip and listening to her talk about it, I became interested. Looked into it a bit, but wasn't sure we could afford it with what we were paying in child care costs at the time.

One day in 2001 my mother showed me a newspaper ad for a "Kids Stay and Play Free" package being offered by one of the airlines. Being the consummate bargain hunter, that caught my attention. I called and priced it up. $1300 for the 4 of us to stay 3 nights at a Value resort including flights and UPH tickets. Hmmm. Nope, can't do it. Too much. It was actually my mother who told me we should really just do it. We'd been working long hours and hadn't had a vacation in years; we'd also weathered some rough days, first going through infertility, then having twins. She told me "life is short, have some fun". In a strange way my mother can be prophetic sometimes, so we took her advice, sucked it up and decided to go. We booked for September 21, 2001.

Then 9/11 happened. We weren't sure what to do. Fear was still on everyone's minds, flights had just resumed. We were worried about flying, especially with our kids. I called down to ASMu and they told me lots of people were driving from far away and that there were plenty of MA people there, so we considered driving, but then thought better of it (22 hrs in the car with two 3 year olds, no way!) We hated to postpone, we were all so looking forward to the trip. So we flew down, albeit anxiously. In fact, the girl behind me vomited the whole way down. (Under normal circumstances I might have offered help, but I had all I could do to keep it together myself.) Fortunately, the kids were happily oblivious.

Needless to say, we had a magical stay! We got a great room in the Calypso bldg overlooking the guitar pool. One of our best memories from that trip was DH and I, completely exhausted, sitting out on the walkway after we returned from the parks and tucked our already sleeping kids in to bed, sipping wine coolers and watching the crowds coming back from the parks in the pouring rain. I believe it was then that we both fell in love with being in WDW! I have to laugh when I think back on it how, even though we'd done our homework, had really no conception about how big WDW was! Imagine we thought we could see it all during a 3 night stay (we did try, LOL). We ended up staying an extra night that trip, and thus began our quest to become part of the magic more often. When my DH asked me the following year what I wanted to do for my 40th bday, I told him I wanted to go back to WDW and stay at the Contemporary!

I think I've posted about it before but that trip took on a magic all it's own, and also seemingly took a nice twist which I considered an amazing gift from my late father. I'd gone for fun to a psychic medium (who'd won Best of Boston the previous year) that spring. My father came through in the reading, absolutely. She said things about him that blew my mind. One of the last things she said was that I'd be taking a trip to Hawaii. I chuckled and said, no, but I'd be going to FL. She said "no, he's showing me leis being put around your neck". Hmm. Oh well, guess that one didn't make any sense. Our trip at the CR was scheduled for Sept, we'd booked a tower room and I couldn't wait.

In August, Disney called to say that the CR was full and they had to move us over to the Poly, but that they were upgrading us to a concierge room for our trouble. I was and begged them to give it to someone who'd want it. I wanted to stay at the CR, darn it! No go, we had to move. Was on the phone all day arguing, and it almost spoiled the magic for me. Almost. Once we knew we had to move, we began to read about the Poly. I remember the lightbulb moment remembering what the medium had said when I read in the tour book "Disney does a great job at transporting their guests to the South Seas of Hawaii". We'd also be staying in the Hawaii building. Hmm. The day we arrived, they drove us to the Hawaii building and when we got there there were CMs waiting for us with leis which they cheerfully put around our necks. They were probably wondering why I was crying. I had to give it to my father, that was quite a stunt he managed to pull off. (It became extra special when 2003 became one of the most difficult years of my life.)

I was still determined I'd stay at the CR, so we booked again after that trip, and we've been hooked ever since! Once we realized how much fun it was, we learned to budget for it and I also (like all of us) became pretty adept at finding good prices. This past trip I didn't even tell too many people we were going. They think we're nuts as it is, but that's ok.

(Sorry so long. Coffee cup is long cold and I'm well over my self imposed Dis time allotment. )

 

[Pea-n-Me]

I'll do a quick one.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Ann-Your dd sounds like she has talents that could go into so many fields...no wonder she's having trouble deciding what to do next! Gosh, I went w/o ins. for sooo long! You're a good mom.

BeadyLady- How frustrating! I know you know to seek out that 3rd opinion in a larger hospital. I'm blessed to have a perfectionist PS right here, plus others to choose from. When you are ready, I think a good place to start is on my friend's site www.facingourrisk.org Her boards are full of info about reconstruction. Many there go out of state to go to the "best" and they also make recommendations to each other.

CherylDan- I'm glad you could follow the trail here... You sound terrific! I'm so happy for you!

Amy- Hi sista! You sound great too! I have no idea who the tag fairy is, but I bet if you asked over on the Technical Board they could fix it for you!

I need to sit down and read all the Disney stories...and type up my own.

 

[laurabelle]

I haven't read through all of your stories yet but I will (I've been super busy since I got back from my trip). I'll do a quick one.

DH and I had never been to WDW. No desire whatsoever, actually. Family members went on their honeymoon and we thought that was pretty silly. We figured, however, we'd take our own kids at some point. When they were 3yo a coworker took a family trip and listening to her talk about it, I became interested. Looked into it a bit, but wasn't sure we could afford it with what we were paying in child care costs at the time.

One day in 2001 my mother showed me a newspaper ad for a "Kids Stay and Play Free" package being offered by one of the airlines. Being the consummate bargain hunter, that caught my attention. I called and priced it up. $1300 for the 4 of us to stay 3 nights at a Value resort including flights and UPH tickets. Hmmm. Nope, can't do it. Too much. It was actually my mother who told me we should really just do it. We'd been working long hours and hadn't had a vacation in years; we'd also weathered some rough days, first going through infertility, then having twins. She told me "life is short, have some fun". In a strange way my mother can be prophetic sometimes, so we took her advice, sucked it up and decided to go. We booked for September 21, 2001.

Then 9/11 happened. We weren't sure what to do. Fear was still on everyone's minds, flights had just resumed. We were worried about flying, especially with our kids. I called down to ASMu and they told me lots of people were driving from far away and that there were plenty of MA people there, so we considered driving, but then thought better of it (22 hrs in the car with two 3 year olds, no way!) We hated to postpone, we were all so looking forward to the trip. So we flew down, albeit anxiously. In fact, the girl behind me vomited the whole way down. (Under normal circumstances I might have offered help, but I had all I could do to keep it together myself.) Fortunately, the kids were happily oblivious.

Needless to say, we had a magical stay! We got a great room in the Calypso bldg overlooking the guitar pool. One of our best memories from that trip was DH and I, completely exhausted, sitting out on the walkway after we returned from the parks and tucked our already sleeping kids in to bed, sipping wine coolers and watching the crowds coming back from the parks in the pouring rain. I believe it was then that we both fell in love with being in WDW! I have to laugh when I think back on it how, even though we'd done our homework, had really no conception about how big WDW was! Imagine we thought we could see it all during a 3 night stay (we did try, LOL). We ended up staying an extra night that trip, and thus began our quest to become part of the magic more often. When my DH asked me the following year what I wanted to do for my 40th bday, I told him I wanted to go back to WDW and stay at the Contemporary!

I think I've posted about it before but that trip took on a magic all it's own, and also seemingly took a nice twist which I considered an amazing gift from my late father. I'd gone for fun to a psychic medium (who'd won Best of Boston the previous year) that spring. My father came through in the reading, absolutely. She said things about him that blew my mind. One of the last things she said was that I'd be taking a trip to Hawaii. I chuckled and said, no, but I'd be going to FL. She said "no, he's showing me leis being put around your neck". Hmm. Oh well, guess that one didn't make any sense. Our trip at the CR was scheduled for Sept, we'd booked a tower room and I couldn't wait.

In August, Disney called to say that the CR was full and they had to move us over to the Poly, but that they were upgrading us to a concierge room for our trouble. I was and begged them to give it to someone who'd want it. I wanted to stay at the CR, darn it! No go, we had to move. Was on the phone all day arguing, and it almost spoiled the magic for me. Almost. Once we knew we had to move, we began to read about the Poly. I remember the lightbulb moment remembering what the medium had said when I read in the tour book "Disney does a great job at transporting their guests to the South Seas of Hawaii". We'd also be staying in the Hawaii building. Hmm. The day we arrived, they drove us to the Hawaii building and when we got there there were CMs waiting for us with leis which they cheerfully put around our necks. They were probably wondering why I was crying. I had to give it to my father, that was quite a stunt he managed to pull off. (It became extra special when 2003 became one of the most difficult years of my life.)

I was still determined I'd stay at the CR, so we booked again after that trip, and we've been hooked ever since! Once we realized how much fun it was, we learned to budget for it and I also (like all of us) became pretty adept at finding good prices. This past trip I didn't even tell too many people we were going. They think we're nuts as it is, but that's ok.

(Sorry so long. Coffee cup is long cold and I'm well over my self imposed Dis time allotment. )

How brave of you to keep that first trip so soon after 9/11! Sounds like your dad really worked some Disney Magic!

 

[laurabelle]

Ahh, Disney memories! My first trip was Feb school vaca week, 1993. We stayed at Dixie Landings. An absolutley magical, glitch free trip, I was instantly addicted! A few years later we did another amazing onsite stay at Wilderness Lodge, that is DH's favorite as far as theming. I always wanted to try to stay at every on-property resort -but when my youngest stepson (a couple yrs older than DD) was still travelling with us it was more economical to get suite/condo type arrangements offsite than on-property, so we did that a couple of times in the late 90's. In 2000 I ended up through the DISboards discovering the Swan/Dolphin and with some special discounts there and Starwood Amex points - we have been staying there since....LOVE that location !! If money was no object, I'd go a few times a year and stay at every resort til I'd tried them all!! Favorite Park is Epcot to just "stroll"...but as others have said MK holds the magic...my "do not miss" is Wishes, (and Illuminations at Epcot). Too hard to name favorites...

Epcot is my whole family's fav too! I love the Dolphin, the whole Boardwalk area...everything a stroll away...