Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

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

I just had to pop in quickly and say hi! We got in last night from the most magical trip!!!

BUT reality is hitting hard here... I am extremely busy this weekend with dance rehearsals, recitals and a birthday party... but I will post later with all my trip details!

When we arrived at the airport last night I told hubby to go get the car and the kids and I would get the luggage. Long story short, I saw our fourth bag coming around the belt as I got 2 of the other bags... I looked up, I looked down, looked up and it was gone... I really think someone actually stole it! It was my youngest dd's bag. It's the generic black bag, but had a Disney luggage tag with our last name and my cell phone number on it, so you would think if it was an honest mistake they would have called me... haven't heard a word. We flew home on Airtran, and since I do not know for certain that someone stole it, I filed a claim and of course have heard nothing. After 5 days they will say they can't find it and I get to go through the claims process. Most of her summer wardrobe was in there and a big bag a dirty laundry, ha! Nothing of real value, all that gets carried on. So I have been off buying underwear and shorts...ect.

My insurance co will not allow me to refill my Humira. I called it in a week ago. I am due for my injection tomorrow. They won't fill more than 6 pens in 63 days. That was my dose the first 2 weeks. So the hurdles move back in place.

I am excited to be going back to Pop for bounceback at the end of Sept!!! I need my Disney Magic!!!!!

jackskellingtonsgirl- Glad your mom is doing well. Yes, if ins. will pay I think that participating in that study would help not only her but countless others...


I'll catch up soon!

 

[Sha]

Glad you two had so much fun, Sha!

You were gone for a long time, how many days?

Good for your mom for using the cane. I am not surprised. You both are lucky to have each other as traveling companions.

That is a boatload of pictures. I want a link if you post some over on the Photography board (I don't get over there much).

Forget about that, post some here.

I guess I will be editing some of them tonight to post. I was planning to go up to homeplace tonight but caught a cold from a fellow traveler. I dont want to give them anything as several are elderly and dont need this mess (already saw a MD today and medicated). Was gone there for 10 days. And leave Virginia in the morning sometime. Which come out to a 19 day trip if I drive straight through tomorrow as planned.

The pics will definitely be at my smugmug site... have posted one or two on photo thread... but here is link to see them all as I begin putting them up. I also have a lot to write in the comments section of the pics. So others can understand parts of the trip.

http://believesinfairies.smugmug.com/Travel

okay.. here is one... this was the chuch in the village we stayed in.

 

[snappy]

Glad you are back, Laura. Sorry about the bag incident. What a PIA!

Can't believe your insurance is doing this. Stinks, stinks, stinks.

Hope you were well throughout your trip.

 

[jackskellingtonsgirl]

Welcome home, Sha!

Welcome home, Laura! I hope your DDs bag shows up! How strange that someone would snatch it AND keep it after they discovered there was nothing valuable inside. Sorry about your insurance! That sucks!

 

[laurabelle]

UPDATE!
Dd's bag was sent to Indianapolis... one of four bags, all together, non stop flight...how is that even possible?!? I swear I saw it on the belt though! Steroids can be playing tricks on me! Anyway, after several phone calls back and forth, they delivered it to my front porch sometime overnight, I just brought it in. Thankfully I didn't go crazy shopping! She can always use another swimsuit though! I am swearing that I will never check a bag again, I'm done!

I got a message from my GI nurse. She spent the day on the phone with my ins. co. and made some headway. There is supposed to be a supervisor in today and she is calling them first thing and hopefully can get it filled. Thing is, this is not something the pharmacy keeps in stock so there is no way I'm going to be on schedule now. It sucks because I was doing so well, but I had a major blip yesterday. I'm really feeling the steroid taper now. Anyway, my nurse is amazing, so thank you all you wonderful nurses who care!!!


I also found out that the dd (29 yrs old) of a woman in my prayer group at church is pretty certain of a bc dx. Please keep Jamie in your prayers.

I swear most of my next post will be chock full of magical happiness!!!

 

[jackskellingtonsgirl]

Laura - Glad they found your DDs bag! I hope they are able to get the Humira sorted out! I hate that that red tape is impacting your dosing schedule!
Good thoughts for Jamie.

 

[MerryPoppins]

Here's a story that I hope will make you smile.

This weekend we were out and about. I noticed that my left chest felt slightly sweaty. Not entirely unusual, since I wear a prosthesis and they can be hot. But it wasn't that hot. So when we got home I checked to see what the deal was. Sure enough, Betty's cover felt wet. So I popped her out, so I could throw the cover in the wash and lo and behold I discovered that a prosthesis could hemmorage. Poor Betty had bit the big one. She was cracked down the back and was leaking semi-liquid gel.

Now it's been time to get a new prosthesis for a while now. I qualify for a new one every 3 years I believe and I'd had Betty since 2002. So it was time. I'm using my backup, which DD says is "way too perky" (uh thanks, I guess Betty was saggy just like ol' mom).

So what do you do with a busted prostesis? I considered burial, but wasn't sure about putting silicone in the ground. Then I though of burial at sea (acutally our lake), but figured it could cause a fish kill or something besides scaring a child to death if it washed up on the shore. So do I just toss her in the trash? Do I take her to a hazardous waste site? Trash goes out tomorrow, so I'm anxious to hear. Guess I'll have to go shopping for a new chest this week. Maybe they've improved them since 2002?

 

[Sha]

Here's a story that I hope will make you smile.

This weekend we were out and about. I noticed that my left chest felt slightly sweaty. Not entirely unusual, since I wear a prosthesis and they can be hot. But it wasn't that hot. So when we got home I checked to see what the deal was. Sure enough, Betty's cover felt wet. So I popped her out, so I could throw the cover in the wash and lo and behold I discovered that a prosthesis could hemmorage. Poor Betty had bit the big one. She was cracked down the back and was leaking semi-liquid gel.

Now it's been time to get a new prosthesis for a while now. I qualify for a new one every 3 years I believe and I'd had Betty since 2002. So it was time. I'm using my backup, which DD says is "way too perky" (uh thanks, I guess Betty was saggy just like ol' mom).

So what do you do with a busted prostesis? I considered burial, but wasn't sure about putting silicone in the ground. Then I though of burial at sea (acutally our lake), but figured it could cause a fish kill or something besides scaring a child to death if it washed up on the shore. So do I just toss her in the trash? Do I take her to a hazardous waste site? Trash goes out tomorrow, so I'm anxious to hear. Guess I'll have to go shopping for a new chest this week. Maybe they've improved them since 2002?

I would be leary about disposal too.. never heard what happens to damaged ones. I do know that mom donated one for women who dont have coverage from insurance etc (or was it a client??) The one mom has now is lighter than her first, and she can get a new one every other year here in FL via medicare if I remember right and 6 bras a year. The neat thing is, they come to her with the "new chest" (to quote you). Good luck with your shopping to find the right match. BTW like that you named "her". Has anyone else done that???

 

[snappy]

Here's a story that I hope will make you smile.

This weekend we were out and about. I noticed that my left chest felt slightly sweaty. Not entirely unusual, since I wear a prosthesis and they can be hot. But it wasn't that hot. So when we got home I checked to see what the deal was. Sure enough, Betty's cover felt wet. So I popped her out, so I could throw the cover in the wash and lo and behold I discovered that a prosthesis could hemmorage. Poor Betty had bit the big one. She was cracked down the back and was leaking semi-liquid gel.

Now it's been time to get a new prosthesis for a while now. I qualify for a new one every 3 years I believe and I'd had Betty since 2002. So it was time. I'm using my backup, which DD says is "way too perky" (uh thanks, I guess Betty was saggy just like ol' mom).


So what do you do with a busted prostesis? I considered burial, but wasn't sure about putting silicone in the ground. Then I though of burial at sea (acutally our lake), but figured it could cause a fish kill or something besides scaring a child to death if it washed up on the shore. So do I just toss her in the trash? Do I take her to a hazardous waste site? Trash goes out tomorrow, so I'm anxious to hear. Guess I'll have to go shopping for a new chest this week. Maybe they've improved them since 2002?

Memorable post, Merry. You have me laughing so hard. . . you should be writing a "tell all."

The smilies add a whole 'nother layer to it all.

I believe I would toss it in the trash. However, do you have the phone number of the manufacturer? Maybe they could advise you.

I donated mine too so I don't have any paperwork to find a phone number to call or I would.

To answer your questions, Sha, I had a few @##%&&@@@# (expletives) names for mine but that is all. I really hated mine, too big, heavy and hot.
It was really my own fault though, I should have stood my ground with the lady who fitted me. I knew that thing was too large.

I believe that the new ones are vastly improved.

 

[laurabelle]

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

Back from the kid's dance recital! Can you believe I have not even looked at my Disney pictures yet! I have an eye exam in the morning, so who knows when I'll actually be able to see them or post! Next time I'm here I'll try to start!

Ann- How was your trip?

Melissa- Thanks for the giggle! On the serious side though, I would call the hospital and ask them to dispose of Betty...Boop! R.I.P.
I hope Betty II serves you as well!

jackskellingtonsgirl- I wanted to add a little about the study your mom may particpate in...Yes, this is something different than the Oncotype testing. That is done to determine if chemo is necessary, which is obviously needed in your mom's case. I was in the same boat and I thought going into it that my onc would know what chemo to give me, boy was I wrong. She said I qualified for a clinical trial and having read Dr. Love's breast book I was better informed but still unsure. I decided to go for it and since I'm still here nearly 10 yrs later I say I made the right choice! I think it's great that they are making this available to her, and hopefully the ins. will pay.

 

[jackskellingtonsgirl]

Merry - Mom and I are laughing about Betty! We are sorry for your loss.

Laura - Thanks for your post about the testing for the tumor. I don't know when she will hear back about that.

Mom is doing well. We have talked a good bit about what's coming next. She admitted that she thought the surgery would be the hardest part, but now she thinks maybe that was the easiest part.

She is supposed to go on Wednesday so they can remove her drain, and then I guess she has some time to pull things together before she goes to the onc on July 18. I have been encouraging her to look into the resources that are available in her area so she can go through intake and access whatever she needs.

I am going home tomorrow night. I do think it was good that I came up for a few days.

 

[MerryPoppins]

I actually named Betty after Betty Boop (only with a b instead of a p). It was to make my family smile. My kids were in 5th and 8th grades when I had my surgery, so anything to make them see humor. It also helped in those early days when I'd take her off and then lose her. I could tell the whole family to look for Betty because she was lost again. Now I'll have to decide if my new one will be another Betty or if we'll have to find another creative name.

Maybe I should fish her out of the trash and take her to the hospital. I guess they wouldn't think I was nuts if I walked into the hospital with an oozy prosthesis? Who would you ask? And who knew you'd ever have to deal with such a thing?

Hmmm. I have different insurance than I had in the beginning. Who knows how many Betty's I've qualified for over the years? I'm thinking I shouldn't put if off so long next time. Then if we have an emergency, I'll have more backups. And I think from now on I'll always travel with a backup so I won't have to resort to a sock.

Personally, I don't like the bras they sell you. I'm a few years too young for the grandma bras that they had to offer at my store. I felt like I was in a straightjacket. Hmmm, maybe I should design bras and swimsuits for survivors? I think the current designers have not worn what they design. I just pop mine into my bra of choice. It's only been a problem once. I once stood on a chair to reach some china stored on the top shelf over my planning desk. I bent down to put another piece on the desk and Betty decided to hop out of the top of my bra. The china didn't like that idea and I broke several pieces. Live and learn.

 

[CherylDan]

Here's a story that I hope will make you smile.

This weekend we were out and about. I noticed that my left chest felt slightly sweaty. Not entirely unusual, since I wear a prosthesis and they can be hot. But it wasn't that hot. So when we got home I checked to see what the deal was. Sure enough, Betty's cover felt wet. So I popped her out, so I could throw the cover in the wash and lo and behold I discovered that a prosthesis could hemmorage. Poor Betty had bit the big one. She was cracked down the back and was leaking semi-liquid gel.

Now it's been time to get a new prosthesis for a while now. I qualify for a new one every 3 years I believe and I'd had Betty since 2002. So it was time. I'm using my backup, which DD says is "way too perky" (uh thanks, I guess Betty was saggy just like ol' mom).

So what do you do with a busted prostesis? I considered burial, but wasn't sure about putting silicone in the ground. Then I though of burial at sea (acutally our lake), but figured it could cause a fish kill or something besides scaring a child to death if it washed up on the shore. So do I just toss her in the trash? Do I take her to a hazardous waste site? Trash goes out tomorrow, so I'm anxious to hear. Guess I'll have to go shopping for a new chest this week. Maybe they've improved them since 2002?

OK, that had me cracking up! I have no idea about the proper disposal of silicone....I didn't even know it was harmful? But I must confess, that the mental images of poor Betty washing up on shore - that's just too funny! Good luck with your shopping!

I never got a prostesis. Sometimes I think about it, but not for long. So, yes, I just go around lopsided. But I'm really small busted so it's not that big of a deal. I don't *think*. LOL, I wonder if anybody ever looked and wondered "what's up with the lopsided chick?" Seriously, I never wear anything even remotely tight, so it's just not very noticeable.

 

[jackskellingtonsgirl]

Mom said she doesn't think she'll be too lopsided. She said her surgeon just took some excess fatty tissue and sort of redistributed it during the lumpectomy. Maybe that is why she has some serious bruising! Her regular bras still fit fine.

 

[Sha]

: But I must confess, that the mental images of poor Betty washing up on shore - that's just too funny!

I was doing that too... still amusing. seeing a kid poke at it like in that commercial I saw where some love handles or belly came up on the beach and they poked at it with a stick "what is it??", "I dont know", "better leave it alone"

 

[Iluvthemouse]

Good morning all.
So today is my appt with the breast surgeon. I woke up at 4am, gagging, sick, diarrhea--the works. Strange where the food is coming from since I can barely eat. I am a mess. I am crying at the drop of a hat. I am just so scared and really cant cope.

Update--I did tell DH yesterday morning. DH, DD and I left on Thursday and went for a weekend trip to New York. We came home late Saturday night. Sunday morning I just couldnt take it anymore and I had to tell him. He, of course, was very supportive and took me to the mall to get a pedicure.

So as of right now all I know is I have a "suspicious solid mass" in my right breast. My gut is telling me it is BC.

We are supposed to be leaving tomorrow 7am for Mexico but I havent even packed yet. My appt with the surgeon is at 4:30 today so I dont even know if she will let me go or not.
I know I am whining alot. I never thought when I turned 40 just 4 months ago, I would be facing this.

Thank you for listening.

 

[Sha]

Good morning all.
So today is my appt with the breast surgeon. I woke up at 4am, gagging, sick, diarrhea--the works. Strange where the food is coming from since I can barely eat. I am a mess. I am crying at the drop of a hat. I am just so scared and really cant cope.

Update--I did tell DH yesterday morning. DH, DD and I left on Thursday and went for a weekend trip to New York. We came home late Saturday night. Sunday morning I just couldnt take it anymore and I had to tell him. He, of course, was very supportive and took me to the mall to get a pedicure.

So as of right now all I know is I have a "suspicious solid mass" in my right breast. My gut is telling me it is BC.

We are supposed to be leaving tomorrow 7am for Mexico but I havent even packed yet. My appt with the surgeon is at 4:30 today so I dont even know if she will let me go or not.
I know I am whining alot. I never thought when I turned 40 just 4 months ago, I would be facing this.

Thank you for listening.

That was really sweet of him to take you for a pedicure. Sounds like you have a good one that with the support he is showing. Prayers for your visit to your surgeon and overall outcome. How long is your trip to Mexico? Hopefully you can still go and enjoy it. Hope to hear back from your appt this afternoon.

 

[jackskellingtonsgirl]

Iluvthemouse - You will be in my thoughts today! I hope everything goes well!

 

[Pea-n-Me]

Good morning all.
So today is my appt with the breast surgeon. I woke up at 4am, gagging, sick, diarrhea--the works. Strange where the food is coming from since I can barely eat. I am a mess. I am crying at the drop of a hat. I am just so scared and really cant cope.

We need to do a crash course of something that I think will help you -relaxation and visualization. When you feel that sense of dread kicking in, stop, and change your thoughts to something else, something pleasant. Tune in to the "Movies Of Your Mind". Let's figure out what that will be. Where is your favorite place to be? What about your favorite vacation spot? I will use mine as an example. When I learned this myself, I chose the top deck of Disney Wonder.

How to do it? Find a quiet spot where you will not be interrupted. Turn off the phone. Light a candle if you like that, or put on some soft music or nature sounds, preferably appropriate to wherever you're going. Start to relax your body physically. Breathe deeply, from your abdomen, not your chest. Slowly in through nose, slowly out through mouth. Again and again. Visualize your muscles relaxing beginning at the top of your head and going down - neck, shoulders, chest, arms, belly, legs, feet. Don't rush, take your time. Do this for several minutes. Picture each muscle individually relaxing. Don't allow your mind to wander; stay focused on your muscles.

Once your muscles are relaxed, in your mind, put yourself in your favorite place. Visualize yourself doing what your favorite thing to do would be. Kick in your senses: hear the sounds; smell the aromas; feel the air; see the sights; enjoy the pleasure you have being here. Stay there for a while and take it all in. Continue to feel how relaxed your muscles are. If you're a spiritual person, thank God and your guardian angels for bringing you this joy today. You are in control here. Leave when you're ready to leave, but promise you'll be back soon for another visit.

Research has shown that doing this daily helps kick in the relaxation respose for the rest of the day, even when things get stressful. The beauty of it when you get good at it is that you can make it kick in anytime, anywhere. It becomes your Happy Place. And it is extremely effective. Try to make time today to try it out, even print it up and take it away with you so you can enjoy your trip.

Other visualizations that might help you are picturing yourself walking arm and arm with us, a strong force of survivors and friends who care, together. A favorite of the people who taught me this was to picture yourself as a big, strong tree with roots that go into the ground for "grounding". You can put yourself anywhere you want and visualize yourself being very strong. Practice and do it in place of the visceral reaction you're having to stress and worry, please. I guarantee you it will be much more pleasant.

Wabt a report back later on how it went, ok?

 

[snappy]

Iluvthemouse, IluvthewayyourDHsmindworks.

Pedicure=bliss.

Good luck today. Please know we will be with you big time in spirit.

Laurie