2012 sisters

mcook,   I 3rd what ^ what moonflower said re: Maiya and her mother.

scorch - best of luck with your new MO. You have an appt?

Who is it that is very concerned about the tamoxifen? I'm sure many of us but I forget and my internet is acting up so I'm not risking going back thru posts... My expectation on the tamoxifen is affected by info from my family history re: menopause. My mother had a hysterectomy and oopherectomy at 44 (or so) and she said it was "the best thing that ever happened!" to her. So, she experienced sudden, unnatural menopause (but maybe closer to an appropriate age) and basically liked it. My older sisters have not had particular difficulties with their natural menopause. I am in chemopause right now and so far - knock on wood - am currently only dealing with lots of hot flashes. Really, the frequency is ridiculous. The scarier side effects of tamoxifen do look scary but I am not intending to be on it for 5 years. At age 48, and considering my family history, I am prepared to have an oopherectomy sometime in the next year or two and then go on an aromitase inhibitor. If I were younger, I might be more freaked out about it. I also have a friend who was on it for a few years after BC surgeries around my same age and she hated it, ended up with an emergency hysterectomy & oopherectomy.  I do wonder about raloxifene and why we don't hear more about it. Is it more expensive? less effective? sounds like there are fewer side effects but is that just lack of research? Reading ridonkulous amounts of info sometimes helps me, if only to then ask my MO relevant questions and get his best advice. If you scroll down the following link, there are links to a lot of the research articles on tamoxif&&k and others: http://www.cancer.gov/cancertopics/factsheet/Therapy/hormone-therapy-breast

hmmmm, I'm also going to go browsing through the tamo thread here:http://community.breastcancer.org/forum/78/topic/696015?page=656#idx_19678

 hth anyone - hope your Sunday is peachy.

Tazzy - thanks and I wish I had the patience enough to learn how to garden I attempted to keep three herb plants alive ( and no not the illegal type:)) of course I killed all three poor plants! I am always jealous of people that can grow things!



Allurbad thanks for links I will check them out.

Juneau,

Awesome sauce!  Money donated!

Scorch

oh yeah, this hit the spot: http://www.thewannabechef.net/2011/12/02/paleo-mug-cakes/

Thanks again whoever suggested the mug-cake. omnomnomm...

Welcome Outdamnspot...great name by the way!  Sorry you are joining us but want you to know this is a great group!  Feel free to ask, vent, rant, rave and be yourself.  We are all going through this in one way or another and I am sure are all thankful to have each other as we "get it".  I had lumpectomy in July and while not fun, it is very managable.  You'll get your full pathology after that. Please feel free to ask any questions you may have too, we will try to help where we can. 

I'm in Juneaubug...with a donation but wish I could walk with you! 

Regarding tamoxifen, I am also thinking about turning it down. I am ER- and only 20% PR+, but my onco thinks I should take it. But I think chemo, lumpectomy and rads really ought to be enough, and why block estrogen if I'm estrogen-receptor negative? Makes no sense.

I don't know why your doc would recommend it, stride. This is why bc is so confusing -- all the different opinions our doctors have. My sister and I were diagnosed the same week. Both with Stage 0, dcis... Upon further testing, they found a second spot on me which was invasive so our paths were different. I was 92% ER so while I am thankful I dodged the chemo bullet, I am now on Femara (post menapause) for 5 years... My sister was ER-, had a lumpectomy and radiation and nothing more. She has the added problem of having LCIS which is an indicator of of increased risk of getting another bc so has to be very vigilant all the time. (although don't we all). My bs said it would be out of the question to take any anti estrogen drug unless there was substantial ER+ so I don't know.... I'd ask my doctor what the benefit would be. I really know so little. This is a crash course but of c ourse, each case is so different so who knows.

Juneau, you're quite welcome. I wish I could donate to everyone, all the time.  Like my political candidate (not telling which).. anyway, everytime they offer a new bumber sticker, I'm in for 5 bucks and it's been quite a few. I put them on the car.... dh removes them because he says we're going to get the car keyed lol... My granddaughter put a sticker on my car which is a wedding type picture of a black and white couple, next to them a picture of two women, next to them a picture of two men... Underneath, it says, this is what love looks like. I agree with the sentiment and I've yet to be keyed for that one so I'm not worried about a few political stickers but my husband is apopletic about them all lol.... Anyway, I am going to the Queens thing in October. I'm not far from you and would love to come and meet you and walk with you. Perhaps it will be doable. No promises but I'd love to try. 

A word about my DH.... He has somewhat of a temper. When I act Femera crazy, he fails to get it and often comments back or fights back and I end up crying like a baby --- or like an idiot... So he looks bad there because I've explained more than once it's med related and he doesn't get it...... BUT and this is such a big but.... and I hate to talk badly about family.... but, I have a sister who is an RN who worked in surgical departments. Also, she lives less than a mile from me. When we came home from the 2 emergency surgeries and I had 2 drains and kept bleeding through the gauze and it had to be changed at least twice a day, my husband was bandaging me. Sometimes his frustration was great because he has big fingers and he had a hard time doing it but he did it. When my ps said take showers and wash the drain site and the surgical scar with soap and water and put bacitracin on/in it, he was pinning my drains up on gauze necklaces he made for me and washing my back and making sure I made it out of the shower safely..... Where was my sis the RN? Well, kind family members explain, she was having a hard time dealing and not being there was her way. We were best friends but she hurt me so deeply. I am not a confrontational type (although since the Femera, I've told her how I feel in no uncertain terms twice).... so we are still best friends. In fact, going to AC from Tues to Wed. to gamble, my favorite sport lol.... But I guess, when I think about how I want to punch him for not giving me the benefit of the doubt when I'm acting a little strangely, I must remember the bandaging he had so much trouble doing but did and his washing me in the shower and his helping me dress and taking me to every appt  and you all know, in the beginning, there are so so many.... I am just feeling sad and sentimental now so want to show my appreciation and since he's busy watching football, I'll show my appreciation for him to you guys because you're such good listeners and you get it ..... How do I get over the lack of my RN sister being there for me? That is a dilemma. I'm sure I'll do it in time, but man, she hurt me. Also, when I went back to the hospital close to death because of blood thinners and internal bleeding, her father in law called from Fla. He is old, I grant you, but he had a sore throat... He asked her to come down for a few days and she did.. While gone, I had the second and much more serious emergency surgery and was in ICU while she was in Fla. tending to his runny nose..... Do I sound bitter? haha.... Boy, I've been here for a few months, held this in and now I am rambling. I am so sorry for those who find this boring or off topic.... It's like vomit. It just came out and I couldn't help myself ha ha ha.... and yep, this IS the sister who had dcis and a lumpectomy but she didn't have it until a month after I went through my stuff.... I even had a visiting nurse that was paid for by insurance but I'm sure I'll get a co pay bill.... She is an RN.... OK... done....

I send a virtual open arms welcome to you, outdamnspot.... As you can see, we cover the spectrum... We come from all over, some sicker than others, some older, some mere youngsters (from my 63 year old perspective)... What we have in common is we didn't ask for this and yet we are here to listen to each other laugh, cry, curse... Feel free to do any of that. We will be here to listen because no matter what, we care.

Yeah.  Granted, I haven't found the SEs from tamoxifien unbearable, but SEs there are. Not to mention the small risk of blood clots and other cancers.  Why would your mo want you risking problems with no possibility of benifit?

when I was a little kid, back in the 1950s this was, my mom and dad had a couple who were their best friends. My parents had two. Jerry and Carol had 2 kids... Well, at 7, the older boy who was a couple years younger than I was, got bone cancer. For 4 years, they nutured him. They told him he had the same disease Mickey Mantle had (as he was a great baseball fan). It wasn't true but it made him feel better. At 11 he passed. I was 13 and will never forget it. Yes, it is the circle of life but that circle seems so unfair sometimes.....I wish with all my heart this baby has the tumor removed and is healed. 

Trying not to be hurt by the words of a 4 year old, so figure if I post them here - I'll see the humor in them. My scruffy head is pretty tender, but I try to keep it covered most of the time when my kids are up and about. But tonight by their tub time, I'd had enough. So I stripped my head and let it breath. Well - as I was helping my 4 year old get ready for bed, he looked intently at me and said, "Mommy - I don't want to see your bald head tonight." I know he meant no harm - especially, since he was curiously rubbing my fuzz a minute later - but ouch! Ah, cancer... Here I sit with a persistent cough I can't shake, nasal passages that feel like they are burning, a crappy taste in my mouth I can't quite shake, a bald scruffy head, nether-regions that are shedding slowly but surely - and as if that isn't enough, seems I will get the pleasure of a monthly cycle on top of it all (why did I think I'd get to skip that during chemo?). But like I keep telling myself - I'm alive, and g-d willing, I will be many many years from now. This too shall pass, eh, Juneau! Halfway through AC has to be some kind of light at the end of the tunnel... To those of you celebrating, Shana Tovah. And to all of you - sweet dreams and a better tomorrow!

Ramols, aahh kids. They can say things that make you smile and sad at the same time. Just go bald headed around them all the time and they won't even notice it. My three your old kept saying I don't like it wear your new hair. The new hair being the wig I bought but never wore... But they got used to it. They get used to it fast too.



My lymphedema is definitely there. I wore a jacket today that was snug. When I took it off I had cloth lines imprinted on my forearm that were not there on the other arm. This makes me more sad and angry than losing my hair and my scars and mangled breast. I fucking hate this. My arm is not measurably different yet but this is just the begining I am afraid. I have only just begun radiation.

Jpmom, I'm sorry to hear about the lymphedema starting. It seems like you've been so proactive at prevention, too.



Lymphedema is the thing that frightens me the most. (Now that the immediate fear of death has been eliminated.)



I don't know if it's the Percocets kicking in or if it's because I put my sport bra back on, but the extreme sensitivity has gone down a bit now. Having the sport bra back on is strangely comforting. I never was very comfortable without a bra on, though.

Hello



Jpmom - I know you like to run but my PT said to hold off on long runs for a bit because of the blood flow and your arm being in that position for awhile? I know I am going to run away but try and stop and raise my arm above my heart often. Hopefully it stays that way it is now but make an appointment today to get it checked out. Not giving advice just sharing info they told me:) I can't live without being active so I will take my chances with it! There is a massage therapist here that is trained in lymph fluid drainage massage and I have met with her and speaking with my doctor to get more information on this and what they recommend. Keep us posted because I am sure I am right behind you when I start rads:( fuck!



Juneau- my family had a party to help raise money for our event. It was called "boogie for boobies" we had a 70 theme! it was amazing on how many businesses donated items for our silent auction! I would not let anyone do a benefit for me so we did this instead. Ahh now I kind of wish at times I would have let them because this dam year I have paid so much for gas,parking, co payments etc that I could have used it:( Thankful I was able to work from home a lot and they let me!



Hope everyone has a good monday! It is chilly here this morning and I am loving it!

McCook I know for me it seemed to get tighter and tighter as the week went on. Then I would go for a fill and it seemed ok for a day or two but then got progressively tighter up until time for another fill. I eventually ask for a bit smaller fills because sleeping was getting tough. My last fill before exchange though, i was pretty uncomfortable about an hour afterwards and stayed that way until the exchange.