Dis Breast Cancer Survivors Part III - GAGWTA!

[Pea-n-Me]

 

[jackskellingtonsgirl]

GAGWTA, Ladies!!

Sha, more good thoughts for your mom!

Maryann, congrats to your DS's!!

Laurie, the baby is FABULOUS! So tiny and beautiful! Princess took a look at her and decided balloons and flowers and water from the little hospital pitcher are FAR more interesting than the baby.
To maintain confidentiality I don't post my charges' names on public forums.

I got the flu mist because that was all they had at the pharmacy. Then I see the mist is only 36% effective in healthy adults, the shot is 68%. Grrr. I should have held out for the shot.

Candy, good luck with the job negotiations!!

DS called my mom last night to tell her he has the role of "The Baker" in the middle school production of "Into the Woods". She told him she does not have to go back to her oncologist for 5 months, so it sounds like things are going well! I need to call her this weekend.

 

[luvmarypoppins]

Good evening ladies!!

Candy - I am enjoying reading your trip report and I will say a prayer that things work out on the job front and with the ins. and your meds too.

Laurie - wow, I hope you get to be the "coolest" sista really soon! Wow, I know ac units are expensive. That is also why I didnt want a repair guy here, saying we need a new unit, well we probably do but its not in the cards right now. So we got away easy with with dh and ds and about $200 worth of parts!!

Sha - hope you have a great trip and will say a prayer for your mom

Elizabeth - you must be so proud of your ds!! Good news about your mom, did she ever buy that house that you thought was a bad idea??

Well they told me that I am approved for 6 more pt visits, honestly I dont think I will be able to move my arn/shoulder by then. I dont know how much they charge without ins. but I would only ask for the bald guy then. Oh and today I got a sub PT. No one bothered to tell me Mr. Coffee went away for parents day at his dd college. Alice - his shirt says LIJ, so he must be from the hosp?? I didnt want to ask him. He was nice, so now I have had 3 therapists and I vote for Mr. Baldy as the best. Ds is driving to work himself tomm. I hope I have a van when he gets back!!

GTAGWTA. Thinking of you all.

 

[jackskellingtonsgirl]

Maryann, yes, she bought the house. Sigh.
She had to borrow money from a relative to cover part of it because she couldn't qualify for a big enough mortgage.
The week she moved in the basement flooded and they had to rip out the carpet. I TOLD HER carpet in the basement is a very bad idea. There is also something about the wiring in the house. Apparently it has been on fire in the past? The wiring is grandfathered in as far as code compliance but the entire house really SHOULD be rewired. Now, Mom didn't tell me ANY of this. She told my aunt, and my aunt told my cousin. Mom doesn't even know that I know.
Before she was even completely moved into the house my sister went out and got a dog, so the dog is always chewing things, wetting in the house, etc.
The situation makes me absolutely crazy.

 

[snappy]

Maryann, yes, she bought the house. Sigh.
She had to borrow money from a relative to cover part of it because she couldn't qualify for a big enough mortgage.
The week she moved in the basement flooded and they had to rip out the carpet. I TOLD HER carpet in the basement is a very bad idea. There is also something about the wiring in the house. Apparently it has been on fire in the past? The wiring is grandfathered in as far as code compliance but the entire house really SHOULD be rewired. Now, Mom didn't tell me ANY of this. She told my aunt, and my aunt told my cousin. Mom doesn't even know that I know.
Before she was even completely moved into the house my sister went out and got a dog, so the dog is always chewing things, wetting in the house, etc.
The situation makes me absolutely crazy.

Elizabeth, I know aluminum wiring can cause sparks. A licensed electrician can make them safe by installing "pigtails." I wonder if that is the problem. Do you know the age of the house? There was a time in the 70's that some house were built with aluminum instead of copper.

Congrats to your son for landing his role in the play. Is it a drama or musical?

My brother Tom just sent us the website for the hotel he will be staying at in London next month for a work trip. Fabulous. I am so jealous. He invited mom to fly over and go to Paris with him. He is a sweetheart. She has not answered. I can 't see her going which is a shame. There is no reason for her not to.

 

[jackskellingtonsgirl]

Elizabeth, I know aluminum wiring can cause sparks. A licensed electrician can make them safe by installing "pigtails." I wonder if that is the proble. Do you know he age of the house? There was a time in the 70's that some house were built with aluminum instead of copper.

Congrats to your son for landing his role in the play. Is is a drama or musical?

My brother Tom just sent us the website for the hotel he will be staying at in London next month for a work trip. Fabulous. I am so jealous. He invited mom to fly over and go to Paris with him. He is a sweetheart. She has not answered. I can 't her going which is a shame. There is no reason for her not to.

Laurie, I don't know when the house was built. Since Mom refuses to be honest with me I really don't know much!

My cousin said Mom was upset because SUPPOSEDLY she didn't know about the wiring. But other people have told me that something like that would have to be in the disclosures, and Mom would have had to sign the papers that described the past issues. My cousin who tells me these things is an attorney.

I suspect the financing on the house is done is some very, shall we say CREATIVE way? Like maybe the mortgage isn't in Mom's name, and she is "renting to own"? Her realtor is another one of my cousins, and I do not trust that cousin at all. I don't know. I know Mom thinks she is being very clever by lying to me about all of this, but if something happens to Mom I will have a huge, expensive, time consuming mess on my hands.

 

[luvmarypoppins]

Good afternoon sistas

Monique - I am thinking of you and hoping things are well

Elizabeth - I cant believe that about the house

Candy - enjoying your trip report

Laura - hope you are healing. Would love to hear about he Night of Joy.

Well I am in the midst of number crunching about the trip. Oh and I figured my dates based on my endo visit, well in the mail today I just got a letter saying the endo cancelled my appt. and made it 2 days later when we will be in WDW. I will call to rearrange and she will have to wait. I also got my ins. statement for the pt. It seems they bill the ins. co. about $65 a visit. I dont know if I want to pay that myself with the um lack of attention I get etc. I would only do that if I get Mr. Baldy only!! I think I am going to do just a room only at the Yacht Club or maybe a split, and why do you ask, um, forget the package with free dining,. I checked online and no matter what restraunt I put in for what I wanted came up not availalel etc. So I will have to work around the food issues/times dates etc,. Oh, I am sue dh wont be happy, its probably the food that only gets him to go there etc.

GTAGWTA. Thinking of you all.

 

[jackskellingtonsgirl]

Maryann - yay for a trip!! Boo for the endo switching dates! I hope you can get it all figured out. We lose money witht he dining plans. Better for us to have a room discount and pay as we go on food.

Laurie - Just realized I didn't answer about DS's play! It is "Into the Woods Jr.", which is the first act of "Into the Woods". We got the Broadway version of "Into the Woods" on DVD at the library so DS would know what he was in for. I suspect there are kids who don't know anything about the show, the music, etc. so they may lose some cast members along the way. No school on Monday, rehearsals start Tuesday. It will be tricky at first because he has class on Wednesday after school at the community theater, and he is supposed to have Band practice twice a week, plus the band plays at the football games. I think the Band director is going to have to make some choices about where he MOST wants DS, then work it out with the Drama teacher. Theater ends 11/11, so after that he will have Wednesdays for the play.

 

[annrae]

Hi LMP: You asked about our leaves changing in Upstate New York. They started this week and really are beautiful now as we still have so much green with red and orange intermingled. Our weather has been in the 70's which is quite warm for this area in Sept. We really didn't have a very nice hot summer so this weather is very welcome. The leaves should be all changing quickly as the weather will be changing as we go into this coming week - cold and wet.

I hope you are feeling better - you have been through so much in these last few months. Hang in there and thanks so much for asking about our fall foliage. Barbara

 

[snappy]

Hi LMP: You asked about our leaves changing in Upstate New York. They started this week and really are beautiful now as we still have so much green with red and orange intermingled. Our weather has been in the 70's which is quite warm for this area in Sept. We really didn't have a very nice hot summer so this weather is very welcome. The leaves should be all changing quickly as the weather will be changing as we go into this coming week - cold and wet.

I hope you are feeling better - you have been through so much in these last few months. Hang in there and thanks so much for asking about our fall foliage. Barbara

Oh how I wish we had leaves changing and those 70's here. Hotter than blazes and we are trying to weed and put pine needles down for the fall. I am trying to keep an eye on DH, he is killing himself out working outside. In an ironic turn about, he is not working this weekend like all get out. I think he is making up for all the time lost on doing home stuff while working every weekend for months and months.

I guess we could have gone on the vacation after all. However, we would have come home to an nonfunctioning A/c so we would most likely have been frustrated about having gone. Spoils the magic, you know what I mean?

Turns out our next door neighbor also had a lot of stuff blown out after the storm that apparentely killed our compressor. I think we had a lightning strike. Right now I am praising God we did not lose more than the air conditioning. My neighbor said one of the maintenance guys said he could tell it was a strike becuase this very very tall oak in her yard had all the bark blown off it on one side and a branch hanging down. The bark was imbedded in the ground in an unusual way. The tree is not far from where our dead compressor is. Thank goodness the other one survived. Maybe it wasn't running at the time?

Also about the trip postponement, DH's boss ASKED him to reschedule and that he would pay. We will see about that.

I too have the clean up bug. I can't weed, etc. in this heat but I am washing windows. What we really need is to pressure wash everything. I am keeping mum on that subject. We need to PAY someone to do that.

I want to take pictures after some of this is done. I am, really happy with my Halloween decorations. Actually the cobwebs (the real kind) sort of go with the theme. LOL

Got a big chicken with stuffing rasting away. What are you all eating today?

 

[luvmarypoppins]

Good afternoon ladies

Elizabeth - wow, you will sure have your hands full between your ds and the little ones

Laurie - wow that is scary about the lightening. Our house got struck once, but it was when we were in Texas and rented out our NY house. The girl told us the phone blew right off the wall when she was talking on it!! Our food today is boring. I dont do big on sundays. Leftover turkey sandwiches from the giant one I cooked the other day and tonight pizza, but tomm. I am cookng a big ole ham. The ds are eyeing it in the frig!! I want to try making a quiche with the leftovers if they would try it.

Lisa - thinking of you and hope the cold is better

Candy - I will pop in on your report. I might have some dining plan ? for you sista!!

Well guess what ladies...dh spent over 1 and 1/2 hours with the disney rep and then before that the american airlines rep. Well to redeem our miles was a rip off so we will save them for another time. We ended up doing the free dining at the yacht club as the poly was not available and we have too many dinners scheduled, so I am cancelling one and paying oop for one and we are going to Shulas too. He will have to call about that one. That was big on dh list. I think after 300 bandage changes he deserves. it. I just dont like getting dressed up. I am only doing black pants and a shirt, thats it. I hope that is o.k. Well we are still debating about MVMCP, of course dh doesnt want that either. I did get the candelight processional with Vanessa Williams. So if anyone is in the world Dec 9-15 we could meet up. I will have to work all the details out now. I suppose dh will be pushing me in the wheelchair alot. I cant imagine doing too much walking post op etc. I will just use the wheelchair like a walker and I dont want to ruin anything the surgeon will have just done etc.

GTAGWTA. Thinking of you all.

 

[jackskellingtonsgirl]

Maryann, we will just miss you! We come home the afternoon of 12/7.

We went today and bought the materials for DS's science fair project. I hate - loathe - despise - abhor science fair. But it is MANDATORY and is worth about 700 test grades. Gag. So we'll do it. AGAIN.

Laurie, too hot to roast a chicken! Our A/C is running and running - it's in the 90's outside. BUT our grill is out of propane so I am not sure what we'll do for dinner!

 

[annrae]

Laurie, My DH watched football all afternoon and he starts planning his snacks about two hours before game time so we usually have a light dinner on football days. I haven't quite decided what that will be yet; however, roasted, stuffed chicken sounds very good on a bleak, wet fall day here in Upstate NY.

I hope everyone is doing well. Laura, I have been thinking of you and hope you are progressing every day.

Sha - will be thinking of your Mom and her biopsy.

Maryann - Take good care of yourself - it's been a long haul for you.

Melissa - so glad your dates have changed and hopefully we can meet.

Linda and Ann - You must be really into your renovations by now, Linda. We are having a bathroom wallpapered tomorrow (I know wallpaper is supposed to be "out"; however, it is only one wall and I even hate the mess this tiny renovation has created. Ann, hope everything in NH is going well.

Have a good week everyone and good wishes to all of you who are awaiting test results or testing. Hugs, Barbara

 

[Joanne UK]

Hiya, I could really do with some honest advice here.

A good friend of mine was diagnosed with breast cancer last December. Since then she has had 9 doses of Chemotherapy after which she was told that the tumour had shrunk so much that they wouldn't have picked it up in the initial scan. A few weeks ago she had surgery to remove the tumour and also some lymph nodes.

We were all feeling positive at this point. However, today after a meeting with her Oncologist everything seems to have changed. She has been told that she needs to have more surgery as there is some tumour left, she needs 6 weeks of radiotherapy on her breast and neck (initally this was only to be done to her breast) and she was told that the cancer is likely to come back and that she is high risk. Also she has to have monthly injections for 2 years, what the injections are I don't know. SHe had the first one today and has been told feeling menopausal is a side-effect of them!

So what I want to know from those of you who have battled this wretched disease is, how does this sound long-term? Have any of you experienced similar treatment? I'm trying so hard to be positive here and keep telling myself that even if the cancer does return they will pick it up early as they will be checking her regularly, right? Also, it could take years for it to return?

Am I being too positive or does it not look good?

Many thanks,

Joanne xx

 

[jackskellingtonsgirl]

Joanne, I am definitely the LEAST qualified one to answer your question. But I wanted to welcome you to the thread and assure you that someone who knows more than I should be along shortly.

Sending many good wishes to your friend!

 

[Pea-n-Me]

Hi Joanne,

I'm sure many if not most of us can relate to some of the frustrations your friend is experiencing in dealing with cancer. Thanks for being such a good friend to her.

It's hard to know exactly what happened without actually seeing her record. But here's my guess. The plan might have changed because further information came through on the pathology results of the tumor once it was actually removed; we also already know they did not get clean margins, which alters the plan as well. Other possiblilities are that the surgeon and oncologist weren't completely on the same page or that your friend might have missed it. Because radiation is pretty standard, especially with lumpectomy as opposed to mastectomy, (though even with mastectomy, they often still do radiation).

Chemotherapy is designed to kill any invasive cells that "got away" from the original tumor site and have the potential to metastasize, ie spread, and cause cancer to grow in distant organs. Metastasis is what people who die of cancer die from. Chemo also does a nice job of shrinking or eliminating invasive tumors in the breast as well. (People with large tumors > 3cm often receive chemo first in order to shrink the tumor to make it more manageable for surgery; people with smaller tumors usually receive chemo after surgery as the tumor is already fairly manageable, ie you're likely to get clean margins while still preserving normal breast tissue - an asset to be large breasted here.)

Radiation, OTOH, is designed to clean up any cells that were "left over" from the surgery, because if they're not removed, even miniscule ones, they can grow again. That's the difference.

However, all (surgery, chemo, radiation) work TOGETHER to help prevent a recurrence both locally (in the breast, ie radiation) and distally (in other areas of the body, ie chemo). The hard part about breast cancer is that, even with all of this, there is never really a guarantee that the cancer won't come back either locally or distally over time (and there's no set time to say it won't come back, BC is one of those that can come back many years later, unfortunately). That's why they try to be as aggressive at the outset as possible. The time to fight is NOW. (The good news about a recurrence in the breast, though, is that you probably won't die from it.)

Usually three docs are involved: a surgeon, an oncologist, and a radiation oncologist. Sometimes the information you get from each one is a little different. They usually say things like, "The oncologist will go over that with you", because each might approach things a little differently and one doc will never presume to speak for another, but generally, treatment is often pretty standard (though make no mistake, each case is unique and there may be factors that have to be taken into account which are different from someone else's case, etc).

I was told from the outset that I would need surgery, chemo and radiation, but the specifics were kind of up in the air until all results for my particualr tumor were in. For instance, I was told I'd definitely need chemo based on the fact that on biopsy, my tumor was invasive. (This differs a bit today.) However, once they removed the whole tumor and lymph nodes, they saw that my sentinel (ie first) node was positive, that altered the plan in that I had to get 4 more doses of chemo than they'd originally hoped. Another example: they knew I'd need radiation, but specifics weren't discussed. Once I met with my radiation oncologist, she explained she'd be not only treating my breast, but my axilla (underarm, where nodes were) and above my clavicle and neck, because there was a small chance of recurrence there and, as she put it, she wanted to give me my best shot of avoiding a local recurrence that she could (it's also called a local metastasis to confuse the issue even more). She only told me this when I asked why I was in the CT scanner so long for planning (and she pulled up a chair when she explained it in a very serious manner, which made me a little worried; I remember crying on the way home that day - because here I thought radiation was going to be "easy" after all I'd already been through). The type of cancer I had was not hormone related so I couldn't take medications like many with BC can to keep it away (which seriously bummed me out at the time), and it had a high chance of recurring in the first two years, those are two of the reasons they were being so aggressive at the outset; also because it was grade 3, the most aggressive, ie likely to recur. (Being a nurse when you go through something like this is both a blessing and a curse, LOL.)

There are other factors they consider as well, such as size of the tumor. (That was one good thing for me, mine was relatively small at 2.1cm, thank God for small favors.) So with your friend, they're looking at all of this. One difference between my case (6 yrs ago) and cases diagnosed today is that today, they're actually studying the GENETIC DISPOSITION of the tumors so that they know which are likely to recur, which drugs the tumor will or will not respond to, etc, which is great and which definitely is an improvement over what was available to me. So that's good news!

The bad part is that going through all of this is very scary. But more and more of us are surviving as treatment improves. So tell your friend to hang in there. It's a PIA to live through, but it's all for good reason.

Hopefully my ramblings made sense and were helpful. Any other questions, please ask.

PS I think the shots are probably Herceptin-related. If they are, their availability has improved survival rate for that type of tumor by 50%, which is great. The downside is that herceptin positive tumors have a higher rate of recurrence, also. But let me assure you that MANY, MANY women who have unbelieveably scary cases are doing great years later. (And unfortunatley, a few who have less serious cases aren't. That is why breast cancer is called The Beast, in large part because of its unpredictability in nature.)

 

[Pea-n-Me]

DH and I celebrated our 22nd wedding anniversary this weekend. This time of year in New England is special to me for that reason. Crisp weather, leaves turning, kids going back to school, Halloween, etc. Love it.

I also have another anniversary of sorts. The day after our wedding anniversary was the day in 2003 that I found my breast lump. So it was 6 years ago this week. That memory kind of infringes on my more pleasant memories of this week, but I can't help but thank God more so than ever for the blessings that I have in simply being here to enjoy my life and family. I look at my children now, at almost 12 years old, and think of them when they were only 5 years old when I started this journey. (Uh oh, crying now. ) The fact that I've been here for them is beyond what I can express here. I've appreciated every moment I've had with them. Words can't really express the worry that I had that year, and for a few years afterward, and yes, sometimes even now; and the happiness I feel being able to be a part of their lives every day. Being at baseball games and seeing my little boy turning into a man like his Dad. Watching my DD's figure changing from that of a little girl to that of a woman, and guiding her through that special time. Thank you, God.

Alright, enough of that.

We got a dumpster this weekend and actually practically filled it already. We also had a carpenter come out to the house to discuss the built ins that I want to do in the kitchen, and yay, he thinks he can do them! (We've used him before and he's reasonable.) We're going back and forth with the countertop issue, not sure what we want or what to pick. Lots of options, but we don't need to decide right now. We've been watching a lot of those HGTV shows and reading all the books and magazines I've collected to think about what we want. It's exciting. Will keep you posed.

BTW, what do you all have for countertops and do you like them, what would you do if you had it to do over?

 

[annrae]

Hi Linda: Just a few short words! Happy Belated Anniversary! Your words really touched my heart and I wanted to tell you how special you are and how fortunate we are to have you to encourage us when we are down, provide us with information that we can understand and always respond to any of us who need you. You are very much appreciated and for all you do - thank you. Hugs, Barbara

 

[Pea-n-Me]

Barbara, you are so sweet. Thank you.

 

[Joanne UK]

Pea-n-me, thank you so much for your informative and caring reply.

It's so good to know that there are people such as yourself just a mouse click away willing to respond to questions such as the ones that I had. Alot of it does make sense to me, ie the cancer coming back within 2 years and the injections going on for 2 years.

Yourself and all the other women on here are an inspiration.