Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

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

Maryann- I am so happy you are back home! What an awful time you've had...you keep your terrific attitude going strong through it all!

dzee-I'm glad you found us! Congratulations on the big milestone! Here's to many, many, healthy years to come!!!
My story in a nutshell: I think I'm the longest survivor here...I celebrated 10yrs last Dec! I was dxed at age 36, stage II, 2+ nodes, chemo, bilateral masts, 5yrs of Tamoxifen, had hyst/ooph and now on 5yrs of Aromasin. Got Ulcerative Colitis after cancer, but currently I am healed!

Laurie- You are so sweet!

Alice- Hopefully everyone is feeling better at your house. I didn't know much about LI before...thanks for the education Teach!

 

[luvmarypoppins]

GTAGWTA Sistas

Welcome dzee - I don't have breat cancer, but thyroid cancer, I think its a stage 3 or 4 right now and I had a total thyroidectomy and L modified Radical neck dissection in Jan. 47 lymph nodes removed and 6 have cancer but its an agressive form that is rare so I am getting an extra dose or radiation during my pill ingestion when that happens in the near future along with my lovely 2 week low iodine diet. Torture, I tell everyone!! and the lovely sistas here have let me be adopted by them!! Its encouraging to here their stories and share in their lives and struggles too. It gives me alot of hope and comfort too along with my faith.

O.K. Sistas - I am clueless, what is the RFTC?

Alice - Thanks for that post. Guess what? I am really from NJ, but heah, I am ON the Island, I think officially I have lived here on LI now more than NJ and 2 of the ds are LI guys along with the little Texan!! Never been to Jones Beach or Massapequa!! Heah, I lead a sheltered life. I hate driving on the expressway!! I craked up reading that post!!

Melissa - any news about Katie?

I went to church today. It was good to be there. Well the nice lady asked if we wanted any more meals and dh promptly answered no, so I told him to get home early to get some food if I am too tired or sick to cook etc. Dh is good at the dressing changes and I am ready to take a nap soon.

We arent doing anything special for St. Patricks Da.l. It will be the 2 year anniv. of when my cousin died, so I will talk to my aunt. I am trying to watch what I say to her, not to upset her and said like I am thinking of you especially this week end and she just went oh, I am thinking of you too etc. I guess she doesnt want to say anything and that is o.k.. I talk to her everyday, she is really my moms best friend in NJ and like a surrogate mom to me since my mom died. I will watch the parade on tv. I need a haircut desperately. I will try and call and see if my girl can squeeze me in wed. but I am not holding my breath.

I feel a nap coming on. Have a good day. Blessings to all of you.

 

[snappy]

Sorry, RFTC is racr for the cure, the Susan Komen fundraiser.

The one in Orlando is BIG and fun because it is held on Disney property, prior to 2007 I think it was at AK for awhile, last two years it has been at Wide world of Sports, so technically on Disney property but not at a park.

In 2007 it was actually held on my birthday so we had two reasons to go, this past year, it was a belated 30th anniversary and our first food and wine festival visit.

We like to get the most bang out of our trips.


My DS wants to go with us in May, I am really excited about that one. He always was with us when we rented the offsite villas. We sure had fun in those days, things seemed a whole lot more simple somehow (pre high school and college).

I think he will really like the boardwalk area.

LMP, glad you were able to attend church. You are one amazing sista.

 

[dzee]

GTAGWTA Sistas

Welcome dzee - I don't have breat cancer, but thyroid cancer, I think its a stage 3 or 4 right now and I had a total thyroidectomy and L modified Radical neck dissection in Jan. 47 lymph nodes removed and 6 have cancer but its an agressive form that is rare so I am getting an extra dose or radiation during my pill ingestion when that happens in the near future along with my lovely 2 week low iodine diet. Torture, I tell everyone!! and the lovely sistas here have let me be adopted by them!! Its encouraging to here their stories and share in their lives and struggles too. It gives me alot of hope and comfort too along with my faith.

O.K. Sistas - I am clueless, what is the RFTC?

Alice - Thanks for that post. Guess what? I am really from NJ, but heah, I am ON the Island, I think officially I have lived here on LI now more than NJ and 2 of the ds are LI guys along with the little Texan!! Never been to Jones Beach or Massapequa!! Heah, I lead a sheltered life. I hate driving on the expressway!! I craked up reading that post!!

Melissa - any news about Katie?

I went to church today. It was good to be there. Well the nice lady asked if we wanted any more meals and dh promptly answered no, so I told him to get home early to get some food if I am too tired or sick to cook etc. Dh is good at the dressing changes and I am ready to take a nap soon.

We arent doing anything special for St. Patricks Da.l. It will be the 2 year anniv. of when my cousin died, so I will talk to my aunt. I am trying to watch what I say to her, not to upset her and said like I am thinking of you especially this week end and she just went oh, I am thinking of you too etc. I guess she doesnt want to say anything and that is o.k.. I talk to her everyday, she is really my moms best friend in NJ and like a surrogate mom to me since my mom died. I will watch the parade on tv. I need a haircut desperately. I will try and call and see if my girl can squeeze me in wed. but I am not holding my breath.

I feel a nap coming on. Have a good day. Blessings to all of you.

Hi luvmarypopins,

Thanks for the warm welcome!! Doesn't matter what kind of cancer you deal with we all travel the same road of surgery,recuperation, acceptance and at times pure terror!!! People try to help but only a fellow sista who's dealing with it and has been through it understands!!! That's why this place is great for us dealing with the affects both now after of this horrible disease. I hold warm and healing thoughts for you!!! You sound like a great and strong lady!! With that attitude you will be feeling tip top in no time!!!

 

[dzee]

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

Maryann- I am so happy you are back home! What an awful time you've had...you keep your terrific attitude going strong through it all!

dzee-I'm glad you found us! Congratulations on the big milestone! Here's to many, many, healthy years to come!!!
My story in a nutshell: I think I'm the longest survivor here...I celebrated 10yrs last Dec! I was dxed at age 36, stage II, 2+ nodes, chemo, bilateral masts, 5yrs of Tamoxifen, had hyst/ooph and now on 5yrs of Aromasin. Got Ulcerative Colitis after cancer, but currently I am healed!

Laurie- You are so sweet!

Alice- Hopefully everyone is feeling better at your house. I didn't know much about LI before...thanks for the education Teach!

Thanks laurabelle!!!

Wow! 10 years!! That's awesome!!!!!!!! I too was down the Tamoxifen road for the last 5 yrs and now going in a new direction! I'm now on Femara. Not the best side effects in the world!! It attacks the joints and makes you feel stiff and achy. I feel a lot older than my 48 yrs!!!! It also makes you retain water so things like your wedding rings are just a little snug!! Heck I really don't need help in that area I do just fine on my own!!!! I suffer freon Crohn's disease. which is a form of ileitis/colitis. I suffered from it long before I was diagnosed. Had surgery and now just have mild side symptoms which are controlled with a medication. So can totally understand how terrible that was to deal with too. My opinion is all these trials only make us stronger and more compassionate people as proven by all the warm welcomes I received from all of you!!!
THANKS!!!!!

 

[laurabelle]

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

Laurie- I'm glad your son is going on your trip. I know what you mean about simpler days...

Maryann-Yes, Race For The Cure, although they have renamed the whole thing Komen For The Cure, so we should change our acronyms I suppose. I went to church yesterday too. I haven't gone very often the last few months. It was very good to be there.
to your family on the anniversary of your cousin's death tomorrow.

dzee- We are kindred spirits! I tried Femara first, but the side effects never let up so I switched to Aromasin. I had some of the joint pain at first, but not nearly as bad as Femara, and even that's gone now.
How long have you had Crohn's? It took a while to dx my UC as well. Been through tons of meds and just dodged having my entire colon removed. You can go back a couple of pages in this thread to read about it.
You're right, I found strength and compassion and lots of other good stuff I never knew before cancer...cancer sucks, but it has been the catalyst of some huge positive things in my life. I'm glad you're here!

 

[dzee]

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

Laurie- I'm glad your son is going on your trip. I know what you mean about simpler days...

Maryann-Yes, Race For The Cure, although they have renamed the whole thing Komen For The Cure, so we should change our acronyms I suppose. I went to church yesterday too. I haven't gone very often the last few months. It was very good to be there.
to your family on the anniversary of your cousin's death tomorrow.

dzee- We are kindred spirits! I tried Femara first, but the side effects never let up so I switched to Aromasin. I had some of the joint pain at first, but not nearly as bad as Femara, and even that's gone now.
How long have you had Crohn's? It took a while to dx my UC as well. Been through tons of meds and just dodged having my entire colon removed. You can go back a couple of pages in this thread to read about it.
You're right, I found strength and compassion and lots of other good stuff I never knew before cancer...cancer sucks, but it has been the catalyst of some huge positive things in my life. I'm glad you're here!

Hi kindred spirit laurabelle,


Glad I'm here too!! I was diagnosed with Crohns in 1982!! Yes I'm old! Was extremely sick for 2 years with constant hospitalizations and extreme and dramatic weight loss! Once when I was admitted to the hospital one of the doctors on my case was so upset that the nurse kept telling him I was in room XXX (don't remember the #'s) and he kept telling her no she's not!! She finally escorted him to the room and proved it was me!! Right there and then I knew I wasn't in good shape!!! He didn't recognize me because I was SOOOO gaunt (weighed only 80 lbs). Needless to say I was a mess and felt I was too young to be this sick and that I was missing all the fun with my friends!!!! The Oct. of 84 I had an obstruction of the bowel and had to have a resection! The surgeon was a friend of the family and when he did the surgery made sure that all was clear and would do the best he could to make sure there would be a full recovery!! And he kept his word!! I was told the bowel will never act the same and there may be times that certain foods could trigger a reaction but they are so mild that I don't even think about them!!! Are you on any meds now? I'm on Questran. It's real use is for high cholesterol but was found to really help Crohns patients!! We have too much bile in our digestive system and that causes diarrhea from the simplest of meals. This med takes care of the xtra bile and lets me lead a pretty normal life!!!
I'm so happy that you are well and dodged that nasty surgery!! We have had a lot to deal but we made it threw!! We are strong, we are invincible we are woman!!! Old song lyric but rings so true!! Korney huh?!!!
I know there are alot of people here who have been touched by these terrible diseases an are still fighting. I wish you Disney Wishes and Pixie Dust for a speedy recovery!!! Glad I'm here!!!

 

[luvmarypoppins]

Good Afternoon Sistas!!

GTAGWTA

Well I have spent so much time on the phone today. I am going to the radiation oncologist on Thurs. This is for a re evaluation they said. I guess she wil have to talk to the surgeon so see when my belly wound will be completely healed. Then simultaneously the dietician is coming to see me there in the hosp. where the rad. onc. is. and she will discuss the dreaded low iodine diet again I guess. I have talked to her on the phone alot, but not in person.

I got to talk to my former school mom who works at the rad. onc. of course she is off on thurs. when my appt. is. I havent seen her in years. I did tell her last time the rad. onc. kept us waiting for over 1 hr. She said well she takes alot of time with her patients, um, hello, she didnt take hardly any time with me and seemed to rush me out. I will make sure this time she goes into more detail of the biopsy and pathology stuff.

Then some nurse from my ins. co. calls. No offense to our dear Linda, but maybe its just my company. They have something called a case management program which I utterly refuse to participate in. I feel their only objective is to save the company money. Not to mention at christmas they sent me a wonderful brochure about the program that had a line that said something like, we will assist you in your end of life planning or something like that. I almost hit the roof. Now this lady, not the same ones who have called me in the past, says, oh are you going to be getting radiation or chemo? I said, well do I have to tell you that personal information? She said, no, you dont have to. I said, then I am not. She says, oh I will just write refused on that line or something like that. Hmm, what business is that of hers? Her only goal is to save the company money of course.

Then the nurse from the hosp. calls to see how I am doing and asked if there was anything they could do to improve the floor., Oh yeah, like I am going to tell her my opinion about that. I have already been on that floor twice and have seen what goes on there. I must admit there was a dramatic improvement since Jan., but heah, if I go there again, my life will literally be in their hands, so I am not saying anything negative.

I am just trying to get back to normal and do little stuff like take a shower, do a load of laundry, do the dishwasher and clean out some of the refrig. Amazing what goes on at home when you are in the hosp. for a week, I am getting tired just thinking about cooking dinner. We will see what happens later.

I do know that when I lived in Dallas the RFTC was just starting to develop. Nancy Brinkerhoff was a well known socialite there as I am sure Elizabeth knows. Her husband I thought owned restraunts like Chilis and now it has really turned into something great. I had read in the paper there years ago that Nancy really wanted to do something to honor her sister etc.

 

[Tuffcookie]

Maryann, It is so good to see you DISing! I will continue to keep you in my prayers!

Now, I am asking for everyone's prayers here for a co-worker. I found out today that she's been diagnosed with breast cancer and she will be undergoing a double mastectomy.

I work for our city and we've had alot of employees over the last couple of years get diagnosed with cancer. Kindda makes you wonder if it's something in the environment.

Best wishes to all, here!

TC

 

[Aliceacc]

Maryann, It is so good to see you DISing! I will continue to keep you in my prayers!

Now, I am asking for everyone's prayers here for a co-worker. I found out today that she's been diagnosed with breast cancer and she will be undergoing a double mastectomy.

I work for our city and we've had alot of employees over the last couple of years get diagnosed with cancer. Kindda makes you wonder if it's something in the environment.

Best wishes to all, here!

TC

I'm so sorry to hera that! Can you send her here?? This has been the best source of info for me!!!

Speaking of enviornment-- what are the odds that both me and my next door neighbor had mastectomies within a month of each other?? Who says Long Island isn't a breast cancer cluster area???

OK, speaking of info, I have a new round of questions:

On April 6, I go in to have my expander switched for an implant on one side (and I think work on the other side to have the 2 match. I'll know more when I speak to the Plastic on the 24th. I know he explained it all last summer, but to be honest it was kind of a blur.)

What can I expect in terms of recovery time? And how limited can I expect to be in the beginnig?

Any input to share?

 

[lookingforward]

I'm so sorry to hera that! Can you send her here?? This has been the best source of info for me!!!

Speaking of enviornment-- what are the odds that both me and my next door neighbor had mastectomies within a month of each other?? Who says Long Island isn't a breast cancer cluster area???

OK, speaking of info, I have a new round of questions:

On April 6, I go in to have my expander switched for an implant on one side (and I think work on the other side to have the 2 match. I'll know more when I speak to the Plastic on the 24th. I know he explained it all last summer, but to be honest it was kind of a blur.)

What can I expect in terms of recovery time? And how limited can I expect to be in the beginnig?

Any input to share?

If it were just a simple exchange of expander for implant the recovery time would be a day or two. BUT..if he is going to reduce or reshape the other breast then the recovery might be a while longer. It would then be like a breast reduction which is a more involved surgery. Ask him what he is going to do...and if you are going to have a drain in the other breast if he is going to reduce. The expander switch was no biggie, really. But I had the prophylactic mastectomy on the other side at the same time so it took me a few weeks to recover. FYI...your implant will feel SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO much better than that expander!

 

[Aliceacc]

Yeah I KNOW he explained it all to me. But I pretty much drew a blank after "mastectomy."

I'm planning to go in on the 24th and ask for a full recap.

 

[laurabelle]

~~~***GAGWTA sistas***~~~
Happy St. Patrick's Day!

Cindy- I'm sorry to hear of yet another sista being dxed. I will pray for her... It's good to see you here...stop in any time!

Alice- It's funny how you think you hear everything the surgeon says and you forget it all. I've had implant swaps, but I had bilateral masts, so I don't know about the other side. I can say that the implant swap recovery was a piece of cake. And yes, the permanent implant is so much nicer than the expander!

Maryann- I am sorry they sent you that, ugh. Those "little" things get me the most... I hope they leave you alone.
And I hope that today you feel great and you can put your favorite music on and clean your house!

dzee- My goodness, you have been through so much! I'm so glad the surgery and meds have let you lead a normal life. I've never been on Questran. I'm currently on Prednisone and Methotrexate. Yes, we are survivors ...hear us ROAR!!!

 

[NHAnn]

GAGWTA!

HAPPY ST PATRICK'S DAY!
We had our corned beef and cabbage (with potatoes, onions, carrots) tonight....easy meal in the crockpot DD is not a fan,she had a grilled chicken breast and some of the veggies

dzee...welcome !

I had lunch Saturday with one of 3 ladiesI went through a 6 week education/support program with diagnoses within a monthor so of each other almost 4 years ago. We'd gotten together quite regularly the first couple of years but taperedoff for various reasons. She contacted me recently and so we met. She is the one who discovered ovarian cancer when having an oophorectomy-turned-total-hysterectomy ...following her bilateral mast w/immediate recon. Her ovarian came last year...she's just finished another round of chemo in a clinical trial at Dana Farber...and is having a biopsy of her bladder in a couple of weeks

Somebody (Laura?) asked if I was seeing a difference after coming off my estrogen-inhibitor trial med. YES! I get out of bed and can walk to the bathroom without shuffling/stiffness/painful feet/ankles!! I notice it too after sitting any length of time...not so stiff/sore Sleeping better and generally feeling less...."logey" is the best word I can think of. Sort of like a subtle lifting of a cloud. Not sure if it's all attributable to stopping hte med or starting the thyroid med or combination. But whatever it is...I'm enjoying the signs of spring tremendously this year

Thinking of you all!!!

 

[snappy]

Alice I had a rather drastic reduction on my healthy side. It paled in comparison to the free tram stuff, particularly the stomach pain.

I am probably not the right one to give advice as part of the reason I thought the reduction was a breeze was that it was done at the same time as the flap stuff.

I did not even have a drain I don't think. I eas allowed to take a shower with the drains I did have in after a day or two being home (2 days in the hospital because the watch the flap to make sure it "takes").

I was very happy with the reduction. I could have used a reduction eons ago. Send me a pm for any specific questions.

Ann, I am glad you have noticed a difference being off the study med. You sound young again!!

Thyroid meds work miracles as well. Amazing how much influence that gland has over our bodies.

Maryann, it sounds like you are searching for your new normal. It takes a while, sista, but with your fighting attitude, you will find it.

Dzee, one of my SIL has had Crohns long term as well. Lots of meds, lots of doctor visits, one surgery. She is a smoker though and that bad habit has taken its toll. She is about 54 and is unable to work since Katrina. She is a doting daughter though, and is always there for my MIL who she lives with, always taking her where she needs to go.


Prayers and good thoughts for everyone.

I am getting ready to go in for my mammogram today since I could not fit it in last week. Happy days.

 

[luvmarypoppins]

Good Morning Ladies

Well yest. ds2 took me to the grocery store. Wow, its good to get out of the house!

Today ds1 is taking me to the salon so I can get a haircut. This should be interesting. Last time I saw my stylist she didnt even know I had cancer, neither did I. So I am just going to have her spray my hair with water. I washed it in the shower this morning. I cant put my neck back in the sink, and then I will tell her my whole, interesting story. She is sweet and has 5 year old twins. I am sure I will feel like a new person with a haircut. It is suppose to be very nice this afternoon. I might sit on the porch if it is.

Cindy - I will say a prayer for your co woriker.

Tomm. is the rad,onc. visit, so I will post about how that goes. I am making the dinner now so we can just pop it in the oven later. About 5 pm I seem to run out of steam lately.

Have a great day everyone. Blessings to all!!

 

[Tuffcookie]

Thanks for all your good thoughts and wishes for my co-worker/friend.

I spoke with her yesterday. The good news is, it's in stage 1 in the one side, and "0", but precancerous, in the other. For that reason she has decided to have them both removed. She goes in next Tuesday. She says that she will not have to undergo any radiation afterwards. She is having reconstructive surgery at the same time. I am amazed that they can do that at the same time.

Good to see you on the DIS this morning, Marann!

TC

 

[CherylDan]

GAGWTA!!

Just thought I'd pop in for a quick hello! Sorry to hear about friends with new dxs, and upcoming biopsies. Cancer sucks. I saw a bumper sticker the other day that had the pink ribbon and it said "cancer sucks". I'd like to get my hands on one of those.

Question for all the dog owners....what dog food do you use? We are picking up our puppy Saturday, and I'm still debating what to get, but I think I've settled on "Chicken Soup for the Dog Lover's Soul". Yeah, it's a strange name....anybody ever hear of it? I like the reviews of it better than what the breeder has him on now, so I want to switch over. I found a web site with all kinds of information about dog food - oh my, did I have a lot to learn!
http://www.petfoodratings.net/dogtable.html

 

[laurabelle]

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

Maryann- How did your appts. go?

Laurie- How did the mamm. go?

Ann- I'm so glad you are feeling better! I'm sorry to hear about your friend. She has endured so much. I hope and pray the biopsy is neg.

Cindy- I'm so sorry she will need her breasts removed. It's good news that it was caught so early, but still awful that she has to go through this...

Cheryl- I don't know a thing about dog food but I'm so excited for you!

 

[snappy]

Laura, you find the best smilie's, love the dancing dogs.

Thanks for asking. Just like last year, the breast center was a zoo. I avoided Friday, it did not help. It seems the same doc was doing the diagnostic mammograms and the biopsies needing guidance. Honestly, I started to doubt whether she (the radiologist was a woman? was an A team doc, if you know what I mean.

It was a 4 hour stint with lots of going back in for more views, and spot views. Made me nervous, but it sounded like she was seeing scar tissue from the reduction and was being extra cautious. However, I do so believe in thoroughness, and this doc sure was. I was not the only one. The patients (or should I say victims) all bonded.

Cheryl, I use science diet food. Our puppy was not a delicate type. She was and is a hardy soul. I just went with the same stuff that our local rescue group had her on.

Thanks for the link though, it pays to be informed. When does the puppy join the family?