Dis Breast Cancer Survivors - GAGWTA!

[MerryPoppins]

Now, I guess I'll share a few magical moments.

When DS was about 18 months old, we took him to MK for the first time. He desperately wanted to see "Icky Moose". I'll never forget when he saw Mickey for the first time. When it was his turn, he waddled up and Mickey squatted down. Then DS put his little chubby hands on either side of Mickey's face and gave him a big sloppy kiss on the end of his nose. It was so sweet that I cried. That same trip he said "Oh look! Looky! Mama look!" constantly. It was all so amazing to him. There's nothing like Disney magic through a child's eyes!

Then there was the time that DS (as a young teen) was kissed by a princess. He turned beet red, but went around all afternoon with lip prints on his cheek. I have the cutest pictures of that.

This trip, DD14 was wearing her tiara as we passed through Tomorrowland. As we headed through the crowd, I head someone say "Oh look, it's a princess!" I stopped and looked down at one of the talking trash cans and smiled. It asked "And you are the princess of what kingdom?" DD was speechless, so I volunteered "She is the princess of the kingdom of Oklahoma." So then it proclaimed "And you must be the queen of Oklahoma, then?" The trash can then started to sing "Start spreadin' the news, I'm leavin' today, To make a brand new start of it, In . . . Oklahoma!" DD had on a Tinkerbell necklace and the trash can commented on it. Then it asked me what my necklace was. I said "It's Pooh." The trash can said "Oh no! The queen of Oklahoma has pooh on her neck!" I'd seen these encounters before, but it was so fun to be chosen to be part of the show!

We also had lunch with an Imagineer this trip. That was too cool! We got to spend several hours talking about the things he'd done and a few of the things he was working on. He answered many of our questions about the parks. It's something we'll all always remember and we got to bring home a beautiful black Mickey plate that he autographed for us.

I'm sure there are many more. I'll have to think.

 

[MerryPoppins]

What do you want to know about? I could talk about it all day. The trip was wonderful! We got to experience Soarin', Mission Space and Expedition Everest. We'd never been on any of those before. The weather was lovely. It was only too hot/humid one day that we were there. We met our good friends and got to share some time with them.

We got special seating for Spectromagic from a CM that I met. He was so nice to us. It allowed us to see the parade on the front row. It was fanatastic.

We had dinner at CRT this time and the package included a photo shoot with Cinderella. DD loved that. We used a lot of the photo pass photographers, so I just bought the CD at the end of our trip. I think my favorite is DD holding Tink in her hand.

We're DVC members, so we stayed at the Beach Club Villas this time. It was really nice and Stormalong Bay is a wonderful pool. The kids really loved it.

We also made our first visit to Pleasure Island this trip. I loved the Comedy Warehouse and the Adventurer's Club and the kids did too. I'm sure we'll go back.

All in all, it was a time to laugh and cry together. We enjoy these family trips where we can joke and share with each other. DS told me that we are so fun to be with. That's a lot coming from an 18 year old. I guess we've done something right.

The sad story from our trip, is that DD took her stuffed bunny that she's had since she was three months old. It's a tradition to take Bunbun's picture in our room at Disney, but Bunbun got left behind at a hotel on our way down to Florida. Poor DD feels like she's lost her best friend, even though she doesn't sleep with Bunbun any longer. We've talked to the hotel several times and I've now offered a reward if a housekeeper "forgot" to turn it in. I know Bunbun really helped her when I was diagnosed with cancer. She was the friend that DD could turn to and tell all her secret fears. I feel so sorry for her. I'm in the process of buying a Bunbun Jr. for DD's birthday. It won't be the same, but I have found the retired 18 inch TY bunny in an Ebay auction. Please cross your fingers that someone is honest and comes forward with this well-loved friend.

 

[MerryPoppins]

Here are the kids in Italy.

And here they are at BCV.

 

[snappy]

When DS was about 18 months old, we took him to MK for the first time. He desperately wanted to see "Icky Moose". Then there was the time that DS (as a young teen) was kissed by a princess. He turned beet red, but went around all afternoon with lip prints on his cheek. I have the cutest pictures of that.

This trip, DD14 was wearing her tiara as we passed through Tomorrowland. As we headed through the crowd, I head someone say "Oh look, it's a princess!" I stopped and looked down at one of the talking trash cans and smiled. It asked "And you are the princess of what kingdom?" DD was speechless, so I volunteered "She is the princess of the kingdom of Oklahoma." So then it proclaimed "And you must be the queen of Oklahoma, then?" The trash can then started to sing "Start spreadin' the news, I'm leavin' today, To make a brand new start of it, In . . . Oklahoma!" DD had on a Tinkerbell necklace and the trash can commented on it. Then it asked me what my necklace was. I said "It's Pooh." The trash can said "Oh no! The queen of Oklahoma has pooh on her neck!" I'd seen these encounters before, but it was so fun to be chosen to be part of the show!

We also had lunch with an Imagineer this trip. That was too cool! We got to .

I am LOL.

 

[snappy]

Merry, reading your second post, I felt like I was there. Great pictures too.

It is neat your son appreciates these trips so much. He sounds like a sweetheart.

Sorry your daughter lost her bunn. My son almost lost his blanket when we went to wdw in 1994. It ended up washed along with the sheets, but we got it back, a HELL of a lot cleaner than it was previously LOL.

Thanks for the posts.

 

[Pea-n-Me]

Awesome stories, Merry! Your children are beautiful, and they sound like great kids to boot. I agree you did something right.

I also like to hear stories about teens enjoying trips to WDW with their parents. I can't tell you how many people have told me my kids a) won't want to be with us anymore when they're teens or b) won't want to go to WDW anymore at all. It's nice to hear this isn't always the case, and I will now use the story of your kids if I need backup evidence, LOL. (I also notice the Teen Disney board here on the Dis). I agree, too, too funny about the talking trash can and Oklahoma. I sure hope you can find your DDs bunny. My neices and nephews that are that age still have theirs also, and my DD would be lost without her bear, Dee. BTW, where is your home resort?

Laura, the Japan garden sounds lovely, and do tell, what is a kaki gori? I'll have to stop by the next time I go around the WS. I love England myself, we always stop to get fish and chips and then watch the British Invasion. I had my picture taken with them this trip. During the show there was a man in his 50's up by the stage dancing during the whole show. At the time we thought it was funny, but on our home video it was a riot. I also really love the American Adventure, always cry during the slide show and song, and enjoy leisurely perusing the entire pavilion.

bubbleprincessmom, I'm not sure what they mean by a "surgical biopsy". Usually they do a needle core biopsy (which is done with a needle after numbing the breast), but sometimes they do an "excisional biopsy" where they actually take a good chunk of the area out and study it (done under anasthesia). So you should ask which they mean. I've had 3 needle cores and came close to having an excisional. The needle core isn't too bad, breast is sore and bruised for a week or so afterward. You can read about those in more detail on the breast cancer site. You sound like you're in good spirits which is great.

I had my ultrasound this morning looking at gb, pancreas, liver, kidneys and spleen. (Kind of strange, all the techs greeted me by name and asked how the twins were - must be thought of as a "regular", have had so many ultrasounds there over the years between my pregnancy, cancer scares, cancer and gallbladder ). Once again, thank the Lord, all look good, nothing abnormal seen and looked about the same from one year ago (according to the tech, not really supposed to tell, still waiting the "official read" ).

I figured they wouldn't see any gall stones since they never have. Now just waiting to schedule the HIDA, hopefully on a day I'm already working and can just go down after work (it's an hour drive from home), I'm aiming for next week. If not, we have to see the ENT again Thurs for DH so maybe they could do it then. I am really curious to know what my gb function is like.

Not exactly looking forward to surgery, though. Did I mention when I asked what the surgery was like and whether I'd need to be intubated, the surgeon said yes, whether it's done laparascopically or incisionally, they apparently "tip you upside down and blow air into your belly" so there's pressure on your lungs and you feel like you can't breathe. Guess that was a little TMI for me, didn't like picturing myself that way... Oh well, as snappy said, it'll probably be a cake walk after everything else I've been through. This ought to be a fun spring around here with 3 of us having surgery...

 

[snappy]

Linda, don't forget to ask for the group discount.

Glad everything looked normal on your ultrasound. I agree, TMI on the turning you over and blowing air into you so you can't breathe. I'd want to be under anesthesia for that for sure.

I think that excisional and surgical biopsies are two names for the same thing, but I may be wrong. Around here they use the term surgical biopsy.

 

[MerryPoppins]

Linda, Boardwalk is our home resort, but we've tried to spread around where we stay. It's nice to get a taste of all the resorts.

My kids are great. DS went through a stage where he wouldn't wear anything Disney, but that's past now. DD never went through that. They love our family vacations and I fear they will be upset if we ever have to go to Disney without them. I have hinted that eventually, we'd like a "Mom and Dad" Disney vacation, but that probably won't happen anytime soon.

I think Snappy is correct. I think some doctors say surgical biopsy instead of excisional biopsy. I've heard people say it here. Maybe it's a regional thing?

I'll have to ask my mom if she had a HIDA. She's had so many tests trying to get the bottom of what's happening with her. She's having a scope this coming week to look at the gall bladder and pancreas. Then we hope they'll go ahead and schedule the gall bladder surgery. She feels so bad all the time. I know she's ready to be able to eat without it making her hurt.

Back to Extreme Home Makeover. I love that show. It always gives me a good reason to have a good cry.

 

[NHAnn]

bubbleprincessmom---
I had a surgical biopsy last year...first they mentioend sterotactic but the radiologist and the breast surgeon both concluded that the area of microcalcifications was large enough and located in such a way (on the underside) that surgical was teh way to go. I had to have a needle wire locator procedure before the actual surgery. (Actually 2 wires for either side of the area but let's not go there yet unless you find you will have that procedure) It was day surgery...got some nice vicodin but switched to tylenol after the first 24 hours or so. Ice on **** (oops I mean breast I guess I can't say "b double-o b") really helped a lot. And some close-fitting exercise type bras round the clock for a week or so. I had mine on a Wednesday and went back to work Friday. SHould've taken the Friday too but wanted to keep my mind occupied and it was a busy time in my office. When my results showed DCIS but one margin was not clear I had re-excision a few weeks later....basically lumpectomy without a real lump That was on the Friday of Memorial day weekend and I went back to work Tuesday... Everyone's tolerance is difference...you definitely need to have someone with you to drive you home. And take it very easy as far as lifting and housework and such for a few days. My center gets pathology results in 2-3 business days. The surgeon likes to tell you in person....though I figured out afterward that they do that there if it's not good news. A few weeks ago I had to have a sterotactic biopsy after my first post-treatment mamm showed calcs on the OTHER side ....I had the procedure in the Breast Care center on a Wednesday morning and got a phone call Friday afternoon telling me they were benign. Snappy has good suggestions....ask why this type of biopsy and for written info on the procedure and what you can expect on that day and how you will get your results and so forth. Is there a friend or relative who can go with you to the appts? Two sets of ears are better than one!! Keep up the postive attitude....odds are this is nothing and if it's something we'll be here for you!!! And remember: Don't bleed til you're shot!!!

GAGWTA!!!!!!!!

 

[MSDISNEYFAN]

Hello to All... I am SO HAPPY to find this thread... I was diagnosed with Invasive Ductal Carcinoma in Oct 2005 at the age of 40 and following my first baseline Mammogram...I have finished AC x 4 - just finished #7 of 12 weekly Herceptin/Taxol infusions - I start radiation next week and will be done by early May.. ALL IN TIME FOR MY DISNEY VACATION IN EARLY JUNE.... After being knocked off my feet by this diagnosis and all the fears that follow, I decided that the best therapy in the world for me is Mouse Therapy!...I have thrown myself into planning another trip and this makes it all so much more tolerable...I have not gotten to read all the posts.. obviously, there are a lot of you.. but I am happy to know that there are Disney BC Survivors out there..

 

[laurabelle]

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

bubbleprincessmom- I had a excisional (surgical) biopsy. Basically it's the same thing as a lumpectomy, they are trying to get that whole area out if they can. It was done under general anesthesia. I had DCIS, LCIS, lobular and ductal invasive cancer all in one small area (.08cm) but like Ann, they did have to do a second surgery to get it all out. Eventually I had bilateral mastectomies. I had an appt. with the surgeon for my follow up a week later and I called the office daily starting about the 3rd day, to try to get them to give me an answer over the phone, but they never would. Not everyone wants to hear the news over the phone, but my second surgeon (yes, I changed docs right away, long story) said she likes to do it that way (unless you don't!) because when you see her for your appt. about 2 days later, you have time to start to take in the results (good or bad) and form questions. My advice, find the best breast center near you and have the breast surgeon do your biopsy. Not all surgeons who do them specialize in breasts. I'm glad you're posting here!

MSDISNEYFAN You'll have to go to the first post on this thread and follow the instructions to get your own pink ribbon sista!
You're right, Disney therapy is the best! We've just been strolling down memory lane here, talking about different magical Disney moments and how much they've meant to us. My favorite thing about Disney after my cancer dx is being able to go there and forget about cancer (ok, sometimes it creeps in the back of my mind but I just swat it away... there's no room in my Fantasyland for cancer! ) to be a kid again, but better 'cause now I make the rules and we can have Mickey bars for breakfast! And like Ann, just to simply walk hand in hand with my family... Those are the sweet things I so looked forward to during treatment, and it's worth everything that you have to go through to be able to live it!

Linda- I'm gla dthe u/s went well. Yeah, I know what you mean about TMI during surgery. Before my ooph/hyst my doc sent me info about the surgery and they go into detail. Honestly I try to focus only on my part of it, to be asleep and not know what they heck they're doing to me while I am...now that freaks me out!

I'm so totally loving the Disney stories! MerryPoppins the trashcan OK story was a riot!!!

Kaki Gori- yummy shave ice in Japan!

There's a small cart near the steps that take you up to the garden. They sell Kirin and Ichiban (my fav) beer there too.

Here are my girls in '03 (gosh they're so little!)

And Jan '05 (and gosh they're even bigger than this now!!!)

Funny to look back and see they're always carrying a Disney shopping bag...

 

[snappy]

And remember: Don't bleed til you're shot!!!

GAGWTA!!!!!!!!

This is truly a great line, Ann. A line one should live her life by.
Wasn't it your DH who coined it?

My husband hunts one time each fall. But this line has nothing to do with hunting.

Welcome to our midst, MsDisneyFan. Glad to know another Survivor and Disney nut. Our numbers are legion.

I see you are from Mississippi. Did Katrina impact your area? I see you were diagnosed a month or two afterwards. How is the medical community faring there? New Orleans hospitals are still struggling. You have to be patient to get an appointment here in Baton Rouge as well, with some specialties.
I was so glad when our niece, DH's goddaughter, who is starting her residency this year in GYN will be at Ochsner in the New Orleans area (actually Jefferson). I am betting she will start her practice here too when the time comes. We are so so so proud of her. I am hoping my DD15 follows in her footsteps. She too is a good student. Se also does not suffer fools well, I can't see her getting tangled up in a relationship too early. We'll see.

I know you will enjoy your summer WDW trip. Best way possible to heal IMO.
Also, having something to look forward too is a very healthy thing for mind, body and spirit.

Laura, those pictures of your daughters are great. We have tried the ice cones at Japan too, but down here we have snow ball stands galore and the syrups come in many strong flavors. I think we are a bit spoiled. There is a joint in uptown New Orleans close to where I went to HS where the served them in large Chinese food containers. It has been there so long that my mom who went to college in the area used to get snowballs there. I am not sure if it will be back in business this summer but I know the area did not flood
so I have high hopes. It is called the Plum street snowball stand.

 

[NHAnn]

Good morning! Yes snappy...that was my DH who, by the way is a hunter too!!

Welcome MSDISNEYFAN... yes you will find plenty of Survivors and supporters and ladies going through scares here....all with that love of Disney!! I love the "Mouse Therapy" phrase and the comment has been made on this thread a LOT that mousethereapy should be covered by insurance
DD(19) and I are going for a girl's trip in May for 4 nights at the Swan. We did a July 4 trip together 4 years ago and both enjoyed it This time we are looking forward to more comfortable weather! DH and I have been without any kids 2...maybe 3 times...usually 3 or 4 night weekends. We love it....but DD does get jealous


bubbleprincessmom...I woke up thinking of you this morning (and how to shorten your name to not have to type so many letters LOL ...bpm?? or maybe bubble?) No seriously...I was thinking of you and wanting to give you a big Friday hug

ALso thinking of Beth this morning....

 

[NHAnn]

PS....Merry--- GREAT stories and photos!!!!
How old is your DS?? We need to fix him and my DD 19 up.....oops...she'll kill me...she said she occasionally reads this thread.....just to make sure i"m "really" allright. (Now she'll now I'm really insane too!!! )

 

[MNSusan]

bubbleprincessmom, I sent you a PM. Our stories are very similar.

GAGWTA, ladies!! Just checking in to say hello and offer hugs and support to everyone. Welcome to our new sistas!

Things here are good. Tamoxifen is still not giving me much trouble - its been just over two months. I'm having "warm" flashes instead of hot ones, gained a couple of pounds instead of twenty, get puddly at Hallmark commericals instead of crabby at my DH. Its going a lot better than I expected.

We're in the middle of a bathroom remodel. Its a tiny little bathroom off the master bedroom, just 4'x8', and has a sink, toilet and shower. Everything came out of the room, we re-insulated, re-drywalled, the shower base is in and the heated (!) tile floor is in. Today we start tiling the shower. The new cherry vanity arrived. As soon as its installed (maybe Monday or Tuesday), I can call the Silestone guy to come measure for the new top.

I saw some of your discussion about counter tops, granite v. other things. Have any of you looked at Silestone? I like it because it looks like granite but won't chip or flake and will take the high moisture area of the bathroom. Consumer Reports gave it a thumbs-up. Pricing is about the same as Corian, I think.

My DGS's birthday (8) is early next week, and he's coming to spend the night with us tonight. We'll go to his favorite burger place and maybe to a movie, if I can find a kid appropriate one. Maybe Shaggy Dog. Tomorrow he wants to go either to our Science Museum or to the Mall of America to ride the roller coaster. Somewhere in there, we'll take him to Toys R Us and let him pick out a birthday gift. This is the first time we'll let one of the kiddos pick out their own gift - we'll give him a dollar amount and just let him shop. We have some friends that do this with their grandkids and say the kids love it.

We're also starting to think about our next WDW trip. Maybe October for the MNSSHP. There's just so much between now and then that its hard to think about it right now. We're planning to take DGD (12) to Boston and Washington DC in June to visit family and do an American history tour.

Getting the bathroom done, out of the way and paid for will free up my brain cells to think about Orlando!

Hope everyone has a great weekend. Good luck to those waiting for results. I pray for everyone here on a daily basis and send gentle healing thoughts to all.

 

[Pea-n-Me]

LOL, Ann, I thought about shortening her name to bpm too. Bubbleprincessmom, do you mind if we call you bpm, bubble or maybe your real name? Keep us updated on your upcoming biopsy, we'll be praying for you.


Welcome, MSDISNEYFAN. Sounds like you've been through a lot, how are you holding up? I also had IDC, found a lump two weeks after my 41st birthday. Had a lumpectomy. Did ACX4 followed by Taxol X4, dose dense, and 6 weeks of radiation. I did not have herceptin nor tamoxifin (HER2neu and ER/PR negative). I know it knocked me off my feet! The other day we were driving along and DH mentioned something about my coloring during chemo being "gray". I was surprised to hear this because, although I'd thought so, nobody else ever said anything, everyone always told me I looked "great" (ya, right ). So realizing he was "caught", he told me that after the second dose or so I got that "gray look" and it apparently had scared him, but he kept up a strong front for me. Wow! I've always wondered who had it worse, the person going through treatment or the loved ones who have to watch.

I definitely agree (along with just about everyone else on this thread from the beginning), that Disney Therapy is the best thing you can do for yourself after treatment. And keep the wallet handy, because repeated and frequent trips also become a necessity!

now I make the rules and we can have Mickey bars for breakfast!

You've got it, sista! That's what cancer does for you, gives you a whole new perspective on what's really important in life!

Susan, if you need ideas or thoughts on the Boston area, let me know. I love the idea of letting the kids pick out their own gift, I'm sure DGS will like that.

Ann, I love the fact that you do "girls only" trips to WDW. That must be fun. Merry, I hope you and your DH do get to do an "adults only" trip sometime, but I'm sure if your kids want to come that will be ok with you too, right?

Have a nice day, everyone!

 

[MerryPoppins]

Ann, David will be 19 in June and he's a senior in high school. Sounds like they may be a match. He'd die if he knew I said that, too.

Pea-n-Me, our kids are always welcome to come with us. I can just imagine that as time goes on it will be more difficult to schedule a time that will work for everyone. When that time comes, I won't let my Mickey Therapy be sidetracked. I guess it won't be too many years before we'll be taking grandkids?

I sort of like "bubble" for short. It makes her sound so perky.

My DS is in Kansas City for the weekend and DH is camping with the Scouts all weekend. Guess it's going to be a girls only weekend. Maybe we'll go to a movie? The guys never want to go see a chick flick.

 

[snappy]

Another vote for bubble here. Very cute. We should have a bubble smilie as well.

Susan, your BR remodeling job sounds great. Glad the Tamoxifen is not too bad for you. It seems like you mostly hear about the ladies who are having problems. It's good to hear something positive.

Everyone here is on cloud nine. LSU beat Duke last night. We were hoping but no one was counting on it.

We actually have great football, basketball and baseball teams. It is truly a sports town. I am just hoping that the legislature doesn't cut the knees off of the Louisiana college tuition aid program designed to stop the brain drain. . . the top HS students ALL leaving for out of state schools.

There is a bill being sponsored to restrict the aid to people under the federal poverty line. I just talked to a friend in the grocery store. She said if that bill gets passed they are moving out of state, probably to California. They will have to wait in line to get out of town.

Everyone is being encouraged to call our state senators and representatives.

 

[NHAnn]

Hi Susan...great to "see" you! I'm originally from the Boston area and am about 75 miles away now...so as Linda said, ask away if you have questions or want input. For a little "Disney" touch there is a Rainforest Cafe at the Burlington Mall, north of the city .......

At some point ladies, we really need to think about planning a meet...maybe some sistas mouse therapy??? Wouldn't that be great? I would love to plan to meet up with as many of you as could do something like that....

snappy - we are still in Hockey mode in this house...both my alma mater (Boston College) and DH's (UNH which is where Meghan goes too) are in the NCAA regionals this weekend. Though my father (also a BC alum) is very pleased that BC men and women basketball teams are still in the running......

 

[laurabelle]

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

My dear bc sista Lisa Porter was admitted to the hospital yesterday because her pain has been so out of control. All the tests are coming back showing that the beast just keeps growing. I'm going to visit her in the hospital today, along with some other local sistas. Please, be praying for her, Bill, Katie and Andrew... thank you.
http://www.lisawillsurvive.com/

email From Bill:
Laura,

I got your message on my account. I was able to log into Lisa's so I guess
this will go out to all.

Lisa's pain is now under control with a morphine drip and tordol. Pains is
at about a 4 now. It had been between a 7 and 10 for about a week so this
is an improvement. Her walking is increasingly worse and walking with a
cane and my assistance she can barely make it five feet to the bathroom.

She had a CT scan today. Shows that there is disease in both her pelvis and
sacrum. They still are not sure if this is what is causing the pain and
numbness. We also got the PET Scan results back today and there is a tennis
ball size cancerous tumor in her pelvic area between the uterus and sacrum,
so this may also be the cause.

The PET Scan also showed that she now has mets to the liver. I am beside
myself, but she, as always, is positive. She says she is at peace with all
of it. I'm not even close to being there. I don't know how she can be so
strong. I wish I could take her place.

I'm not going to go into too many details right now. It seems like in the
past I have expected the worse and then she walked away as usual.
Everything seems to be happening so fast all of a sudden. The game-plan is
possibly radiation to get the pain under control and then some sort of IV
Chemo to work on the rest. They haven't even mentioned what we are supposed
to be doing about the brain lesions that continue to grow despite the two
rounds of Temador.

Enough for now. I'm so sorry. Bill