Dis Breast Cancer Survivors Part III - GAGWTA!

[minijeanie]

. My understanding that taking tamoxifen can actually make it worse.



oh wow! my surgeon told me that I had to take tamoxifen for right side because that was lobular cancer and estrogen positive and tamoxifen would work for the right side but would do absolutely nothing for the left side..
Actually both my sisters took tamoxifen and had to switch to famara(?) couldn't take the tamox....

I will investigate when I go in May...Supposedly my hospital in NY is written up as being a good hospital for breast cancer...We shall see.. and I will ask about problems taking pill being triple negative on one side...

 

[laurabelle]

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

Greetings from a long lost sista! I have been off the boards for months, trying to get stronger and deal with life, which as we know, still goes on in spite of any health problems we encounter.

Thank you for the sweet notes, thoughts and prayers. I wanted to post an update to the group...a little background for those of you who are curious and don't know me...I was dxed with invasive BC in 1998 2+ nodes (DCIS, LCIS, lobular and ductal invasive yeah, I had it all). Went through chemo, bi lateral masts, 5 yrs Tamoxifen, nearly as long on Aromasin, oopherectomy, hysterectomy... and just for fun, I was dxed with Ulcerative Colitis (an autoimmune disease) in 2002.

I've been on so many meds I've lost track, and on high dose steroids for ages. Last August my colon met the end of the road and I had it removed. I have what is called an ileostomy, and wear an external poop bag. This was supposed to be the cure, but guess what, it wasn't. I had continued to have an area affected by the disease, and so in Nov. I had another surgery to remove it. In spite of only having 1 cm left of this area, I continued to be sick. So I sought out a second opinion surgeon.

I need 2 more surgeries, the next one is May 4th. I really like my new surgeon, she's able to do an internal J Pouch, then a final surgery 3 months later to hook it all up. I'll lose the external poop bag and be sort of normal again. In the meantime I'm finally off steroids, and they have me on a new med that is really working. I've gained my weight back and I'll be going into surgery stronger and healthier than before, so I have that on my side.

We have a FL trip planned for late June/early July. We'll only be in Orlando a couple of days though. We did the GAD program and will use our one day tickets, then I think we are going to try Sea World and Busch Gardens...never been before. We'll be spending 2 weeks at the beach after that.

My kids are doing great, this is such a busy time of year. My oldest will be a senior in the fall and we are looking at colleges. She really wants to go to my husband's school, hopefully she'll get in. My youngest will be a high school freshman this fall. My girls were 2 & 4 yrs old when I was dxed with BC...I'm so grateful I am alive to see them growing into fine young ladies.

I hope and pray all of you are doing well.

 

[Sha]

Thank you ladies. I could watch the tigers for hours myself. That is my background now on my computer. I heard there is a new baby gorilla. Will be in AK this Saturday. I was at WDW this weekend for a night. I do feel much happier when I am there than I have in awhile. That and when working on a project. Mom got to spend Saturday with my sister and then I met up with them after a photo class. Then met up with some friends at our room for a bit and then again at DHS in the rain and GMR. I did a project for one of them for their birthday today and was a fun project.

I learn a lot from reading what you all post about experiences that brought you to the thread. (need to start getting ready for work... and shuttle is delayed for landing. I just want to hear the sonic boom again).

I think of you all everyday even if I dont post. Prayers included.

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

minijeanie, I don't have any advice, but I wanted to send you a hug. My mom was diagnosed with stage III invasive lobular carcinoma in March '08. Her tumor was fairly large so she started on Arimidex to shrink it, then she had a lumpectomy about 3 months later. She started chemo after that, followed by radiation. Thankfully she is doing well now. For her, there were really no choices. She had SO many positive nodes, plus evidence that in at least some of them the cancer had moved beyond the node, she was at incredibly high risk for mets. I hope your oncologist can provide some insight for you. The ladies on this thread are wonderful, so you have definitely found a good source of support.

Laura, it is so good to see you posting! I am sorry things have been so crazy, but it sounds like there is light at the end of the tunnel! We have missed you. Sending LOTS of good wishes for your next 2 surgeries. Your summer trip sounds like fun! We've never been to Sae World, and the last time we went to Busch Gardens was before DS was born. Speaking of DS, he will be a freshman this Fall, too. Since you have done the high school thing with your older DD you can guide me through the process!

I hope everyone had a nice weekend! We went to a performance at the Arts Magnet on Friday, hit the Disney liquidation sale on Saturday morning, worked Saturday night, did laundry all day yesterday and that was the end of my weekend.

 

[Pea-n-Me]

Sista Laura, so nice to see you! WOW. I'm so glad you found your second surgeon. You've been down an amazingly tough road. It's great to hear you're FINALLY gaining weight and I love the idea of the internal pouch. Keeping you in my continued thoughts and prayers, and hoping we see you more often.

I've also been thinking about Merry/Melissa lately. Has anyone heard from her? Merry, we miss you, too. Hope you can check in with us when you can.

How are you doing minijeanie? I was thinking about you this morning. Another tough sista. You have so much on your plate. There are so many stories here that we've seen over the years. One poster a few years ago found her cancer when she was in her first trimester of pregnancy and had to make the decision of whether to keep the baby while undergoing chemo or not, and worry whether, if she did, would the growing baby be normal and ok. But guess what? She kept her, and both mom and baby ulitimately did ok. I get that same sense with you. Rememer you need to take care of yourself right now in order to be well for others later. Hang in there.

jsg, has obm been following the Oly thread? I haven't seen him in a while. Tell him I upgraded and picked up a couple of new f/2.8 lenses on Craigslist. I'm hoping to get out to use the new camera a bit this week, but for the first time, even before the upgrade, I'm really happy with my baseball shots. Don't want to encourage him or anything but I think he'll like the news. lol PS get some rest, girl!

GAGWTA

 

[jackskellingtonsgirl]

Linda, he does read the thread but he hasn't been posting much. He is pouting because I don't think he should spend $200 on a tripod. I don't see how there is ANY way for him to get $200 worth of USE out of a tripod. He keeps accumulating all this gear, and he refuses to part with any of it. I wish we had a good venue for him to sell off some of his old stuff. I am wrestling with the prospect of paying almost $1000 for Theater camps for DS, so I just don't see a tripod in the budget.

I was thinking of Melissa this morning, too.

 

[wdw4us2]

Welcome back, Laura!

Jacksgirl - I'm with you about the $200 tripod.

NHAnn - You're an inspiration to me. You have been through so much.

I finally heard some good news from the radiologist today - Friday is my last treatment! I thought I still had another week. Amazing how much that bit of news did for my mental health.

 

[laurabelle]

Thanks sistas... as always you brighten my day!

Elizabeth, I read back to your last post about your son's high school recommendations...my 2 cents, for what it's worth, is to only have him enroll in the upper classes of his very strongest subject(s). Those are GT in our school district, then it's Honors and Standard. My oldest dd was recommended for all GT classes upon entering high school. I had her drop back to Honors Social Studies freshman year, and last year dropped to Honors Math, then dropped to Honors Physics this year.

This year was the first actual AP course, English, and she tests in 3 weeks. Next year she is taking 3 AP courses, English, Math (can't recall which one, but it's one she feels confident in) and Economics (this one because the regular econ class is pretty basic and one is required). So you don't have to necessarily follow the standard route to take AP classes...you can move back or jump ahead.

She spoke with teachers who encouraged her to skip pre-requisite courses in speech and creative writing. Her Spanish teacher was disappointed that she wasn't taking it next year, but she has other classes she wants to take.

So in general teacher recommendations are good, especially when they know well what the next courses will be like... but it has to fit the student's plan. Some upper level courses can be an insane amount of work, which can be made easier if it's their strong suit, or torture if it's not.


Let me know if there's anything else, or you can PM me. I'm by no means an expert, I'm just on my guinea pig first child, but I've learned and now my second dd is only taking GT English freshman year...

 

[luvmarypoppins]

Good afternoon ladies

Laura - so good to see you posting sista!! Sorry to hear you are still facing those surgeries but glad you have a plan and can see the light at the end of the tunnel. Remember how I told you I was watching those videos in the hospital so I could see what you are going through. The J pouch sounds like a good plan. My stomach still is not right either after all my surgeiries., I am going to the surgeon in June. And your vacation sounds great. I think Sea World would be fantastic. Glad you are also gaining some weight. Are you on a special diet, supplements etc? Oh well, its just SOOO Good to see you back.

minijeanie - sending you a . You sure have alot on your plate to deal with so I am sure you are reeling from all the decisions, information, surgery etc. Just gather as much info as you can and ask as many questions as you want too. Dont feel anything is not worth asking. Maybe make a list and bring it with you. With my type of cancer I had 47 lymph nodes out and 6 were cancerous and the pathology said it was really rare and agressive so the rad. onc. says we are treating it agressively. Its fine with me especially since they dont even have alot of statistics about mine, so each person is different and ultimately you will decide what is best for you.

Sha - your trips sound fun.

Lisa - Hooray for the last rad!! I hope your dh can get some rest and not feel too stressed out.

Laurie - has the bingo fizzled out??

Elizabeth - wow that is an expensive toy!! But I am sure your dh does not see it that way!! Wow camps are expensive!!

Linda - are you humming Take me out to the ballgame? I always love watching the ds when they play sports. I just cant scream, shout and cheer as loudly as I used to.

I was also thinking about Melissa. Ihope she is well and that her dd is adjusting to college life too.

And here is my cancer humor for the day. I am humming to myself while thinking of the rad. onc.. I'm leaving on a jet plane, your rad. is just gonna have to wait till I come back again. (Because I just booked our tickets, Yippee!!) I am only suppose to get a tracer amount of 5 rmci for the test and be radioactive for 2 days if she goes that route versus the blood test route etc.

Dh called me again from Siberia. He is fine, saw Sleeping Beauty at the opera. I wonder if he meant ballet, oh well. the german guy cant come because of the volcano. The Russians asked him, how will you get home? He said I am not going home, I am going around the world!! I will not hear from him again until he gets to New Zealand on Friday since he has to fly from Moscow to Bejing and then to Hong Kong and then to New Zealand. I think that is like over 17 hours. I also talked to the church lady. She is glad ds and I are team teaching. She hasnt assigned us a grade yet. seems everyone wants 6th or 3rd and 4th, so it looks like we might get K or 1-2, not my lst picks but it will be o.k.

GTAGWTA. Have a great day everyone.

 

[laurabelle]

Maryann, it's good to hear from you too! I'm gaining weight mostly because I'm feeling well, though I'm out of fake energy from finishing steroids, but I do feel better. I'm sorry you are facing more surgery too, but glad to know you are in remission!
Siberia, wow, your hubby does get around!

 

[jackskellingtonsgirl]

Laura, I phoned the counselor today to find out when they are planning to mail the freshman course lists. She said those should go out by the end of this week. I told her I am concerned that DS will be recommended for all pre-AP classes, but we think that may be too rigorous. She said we just need to indicate on the form that we want regular English and/or World Geography. I *think* Biology is only offered in pre-AP, so by default, that's what he will get. But I am good at Biology and the teacher's website is terrific. I think he would really enjoy her class, and I can help him if he needs more explanation of the concepts. Math is his weak subject, so that will be basic Algebra I. He likes English and History. Not sure what he will think of Geography but I think he would NOT care for the pre-AP instructor. She was bragging about being the most difficult teacher on campus. Probably NOT a good fit for DS! And after reviewing JUST the summer requirements for the pre-AP English class, I think we might go basic for that, too. He could read the 3 novels, but all the little "projects" that went along with the required reading made him fidgety and he walked out of the room. He doesn't care for projects, and the higher level classes seem to have a LOT of projects. He has never taken a foreign language, so Spanish will be brand new to him. So, he'll have the 4 core courses, Spanish I, 3 Theater classes, and Dance (for his PE credit). The math and the Spanish will be challenging just by virtue of being math and Spanish, Bio will be a pre-AP class, and English and World Geo will be fine in basic level so his head doesn't explode while he acclimates.

Maryann, more for your DH! The theater camps are a little pricey to begin with, and we are looking at doing 2 different ones. Musical theater, and a 2 week intensive that covers all different aspects of stage. One is in July, the other is in August. It partly depends on Princess's camp schedule because I can't be 2 places at once for drop off.

 

[luvmarypoppins]

Laura - I am not actually having surgery, just a check up because he said "we have to keep an eye on this thing", honestly I think he probably thinks something could or would go wrong. I just have a pinching pain on the L side and sometimes its worse than that. So obviously the graft/mesh thing might not be laying right inside etc. My body hates foreign objects. I think that is where the laprascopic ports had the biggest entry points?biggest amount of mesh is anchored? I will have to ask him. I honestly dont want him cutting me up again unless he can guarantee to fix it etc. and I dont know what a ct scan would show since I read the mesh does not show up etc. It would be something laprascopic if he did anything I think.

Ann - Forgot to say, here is a too. So sorry you have to go through all of this. I am holding off on going to that type of dr. I first thought it was because of one of my meds, then it got worse after surgery #7 last year, got better and now its worse again. I am going to talk to him in June and also this might have an effect on the radiation I am having in May or June since everything that comes out of your body for the 2 days is radioactive. (You get the picture. The rad. onc. has a questionairre and that was one of the questions last year. I said no. Now this year It will be a yes, or I will just tell her if I dont get the form etc. Oh what fun this is going to be again. I hope your treatments will help your situation.

 

[laurabelle]

Elizabeth- Yes, your child (with your signature) indicates approval of choices/changes. Yes, the upper classes are much more work, essays, projects, ect. It makes ME fidgety! I hate lots of homework. I wish they had study hall, but they don't. She is able to get homework done during lunch and other classes that she finishes her work in early.

She had a tough physics teacher this year. He is a physicist, it's his first year, and he has a "different" way of teaching. So many kids asked to get out of his class, they wouldn't let any others move. I had her stick it out and stay after for help. It's made a big difference in how she is doing... he sees how hard she's trying, showing she cares about her grades and is being responsible. It's gone a long way in her confidence, understanding and it's earned her some extra points for effort.

Plus she is learning that in life you don't always have the best "boss" but you have to make it work if you want to do well at your job, get a raise and not get fired!
BTW- He is one of the teachers she is going to ask for a college recommendation letter to show how she has improved...

Ann- I tried the Estring and couldn't use it, I had an unusual experience though. I do know others who used the cream. The thinking is since it's topical it shouldn't go into your blood stream.

Maryann- I hope you start feeling better before it comes to more surgery...maybe time will help.

 

[KJ Luvs Pluto]

Lisa - . Congrats on your final week.

Laura - Welcome back. Although I'm new to the thread everyone here has been so welcoming and helpful it feels like I've been around for awhile.

MaryAnn - I hope all goes well with you and that your husband has a safe (although long and involved) trip.

Ann -

I'm finally getting a little energy back. I've been wanting to do something to celebrate getting through surgery, chemo and rads and told my husband so - several times in fact. But he didn't get the "hint". Guess I'll have to plan my own celebration. It will end up being a bag of microwave popcorn and a half glass of wine in front of an old movie . I can't stand planning stuff for myself. Maybe I'll make him watch a Ginger Rogers/Fred Astair movie, that will teach him .

I hope things go well for everyone this week. GAGWTA.

 

[jackskellingtonsgirl]

Ann, good luck!

FL Lisa, YAY! for the end of rads!!!

Laura, the squirrelly thing at the Arts Magnet is that some classes aren't offered in "basic" level like they are at the "regular" high school. The "regular" high school has a study hall each day - the Arts Magnet does not. The current freshmen HAD to take pre-AP Bio and pre-AP World Geo. Which fascinates me, because the entrance requirements for grades are just a "C" average and 40th percentile in state testing. But the course offerings indicate that they aren't letting in the kids who are low on the academic totem pole. DS is in 3 pre-AP classes now and he NEVER has homework. I have a feeling he is in for quite a shock. I am sure there will be homework even in the basic courses, AND in Algebra and Spanish, and possibly in his Theater classes. I am not 100% clear on what the freshman Theater classes ARE, let alone what all is required in them.

KJ, I think you should do something FABULOUS!! Like a spa day! Or a fancy dinner. Or a spa day followed by a fancy dinner. And dessert. All celebrations must include dessert!

 

[minijeanie]

PeaNMe- thanks for your inspirational words...I know my story is quite minor to many out there and I am grateful for what I do have..

Laura: You are my hero...what a great disposition you have. I don't know if I could go through all those years and be as cheerful as you. Glad you met a new surgeon who seems to be able to fix your problems and allow you a peaceful vacation.....

My goal is to go back to WDW next year with kids... and we want to take a few days trip to US...want so much to see the Harry Potter world...
Have a great week everyone..!!

 

[KJ Luvs Pluto]

jsg - I love your way thinking. A nice dinner with dessert might be just the ticket. Does that trump micro popcorn and a movie - yes, I'm thinking it does. I've never been to a spa, not sure I'm brave enough to do that but dinner I can handle.

 

[jackskellingtonsgirl]

jsg - I love your way thinking. A nice dinner with dessert might be just the ticket. Does that trump micro popcorn and a movie - yes, I'm thinking it does. I've never been to a spa, not sure I'm brave enough to do that but dinner I can handle.

I like to have facials and pedicures. I got a package at the Arden spa a couple of years ago that had a mini-massage, and that was good, too. But if your skin is still sensitive from the rads you might want to just do dinner. And dessert.

 

[wdw4us2]

I'm finally getting a little energy back. I've been wanting to do something to celebrate getting through surgery, chemo and rads and told my husband so - several times in fact. But he didn't get the "hint". Guess I'll have to plan my own celebration. It will end up being a bag of microwave popcorn and a half glass of wine in front of an old movie . I can't stand planning stuff for myself. Maybe I'll make him watch a Ginger Rogers/Fred Astair movie, that will teach him .

I hope things go well for everyone this week. GAGWTA.

Don't feel bad, KJ. I think this is a man thing. Our anniversary is this Sunday and I asked DS if he made any plans. His response, "I was thinking about it." We never go out anywhere unless I make all the arrangements. I wouldn't know how to act if he came up with something and surprised me!

 

[KJ Luvs Pluto]

His response, "I was thinking about it."

I didn't know whether to laugh or cry. It hit so close to home.

But my DH is such a great guy I really can't complain - it's just kinda funny that they can be so clueless sometimes. But he really does make up for it with his other wonderful qualities.

I hope you have a wonderful anniversary, Lisa.

GAGWTA.