Starting chemo January 2009?

Heya Jewels!  Can it be true that we are ALL done with chemo?  Like so many of us, I am at a loss when I remember finding this thread (HUGE thanks to Lisa!!!!!!!), and not knowing if I could do this.   For me, it was Happy New Year and then first TC on Jan 2nd.  Now, it has all seemed so surreal.

For those of you still under the spell of chemo or radiation, let me just say that I'm a month post rads.  My energy levels have returned to normal.  Most things have normalized somewhat.  On the hair issue, I never lost all of my hair or lashes (4tx's of TC).  Now my hair on my legs grows like crazy.  On my head, my hair looks like a bathing cap from the fifties, only  made of hair.  It's very full, but also very soft, like a plush toy.

The only off thing I've noticed are the resumption of my periods.  They're not really periods, but spotting that lasted for about two weeks last month, and now seems to have started again two weeks later, but still just the spotting.

Now I'm just waiting for the tamoxifen to be delivered, and then that train will start.

Wow...I still can't believe the Jewels are done.  I couldn't have gotten through it without all of you.  I don't know how others did before there was this website.  Every post from every one of you was either informative, insightful, inspiring, comforting, funny...  But most of all, the comfort of being surrounded by others and not feeling alone even when you knew on some basic level you were alone.  How can you even begin to quantify or even qualify how much of an impact that can have? 

I have so much love and gratitude for all of my fellow jewels.

Catherine

OMG YOU GUYS!! MAX WON! MAX WON!! AHHHHHHHH!

He gets to MEET Stephen Tyler and Joe Perry!!! I can't contain myself.. I am so happy at this moment.... you have no idea...!!!!  I think we won by like 3 votes at 5p!!  So, Each and Every vote was so important in this thing.... THANK YOU THANK YOU THANK YOU.. for everyone who voted and a special thank you for anyone who forwarded this on to their friends and family... OMG!!!  Ahhhhh...!!!!!

How do I tell him??? He's downstairs right now...clueless!!! Ahhh!!!!  

I know this is a small victory in the scheme of things.. but you have NO idea what it meant to me to be able to do this for Max.... You guys are the absolute BEST!!!  Thank you so much!!! I can't wait for Wednesday!!!!!!

Whoppeeeee, Please tell us when he finds out---I want to know his reaction!

I just logged on to see if the results were in.....WOOOOOHOOOOOO!!!!!   I can't wait to hear how he reacts!

HOLTBOLT:  Woohoo for Max!!!  I am so happy for you guys, that's awesome.  Did you tell him yet? 

I was just checking in to see if Max won. Yahoo!!!  What great news.

 I am doing pretty well.  I have noticed that while I don't completely normal I feel mostly normal.  I don't have that weird muscle fatigue anymore and while I am tired that could easily be because I don't go to bed till midnight and then wake up with hot flashs a few times a night.  My joint still feel weird and I get stiff sooo fast. I always look like an old lady when I get up or walk down the stairs but it get more normal as I keep walking.  My head is covered with fuzz except for one spot where I have a bump/cyst that I need to get a doc to look at and remove.  I should shave my legs but don't actually have too yet.  My brain is not all back though. I have such trouble finding the right word, which is tough in my field of work - conducting hearings and writing legal decisions.  I have been doing fine at work, but they are taking it easy on me.  My case load is very very reduced and I am only working a 4-8 hours a week so far.  

A new student and her husband came to the hospital yoga class today. She will have her surgury  on the 10th and is still so fragile.  She started crying when we did introductions and I shared my history. I hope it did her good to see 4 strong woman, all post treatment - anywhere from a few week (me) to several years, and doing well.  I stayed after to talk to her and give her a looksee if she wanted.  It turns out she lives walking distance from my home.  Another strange coinsidence is that her surgury date it the same as that of the other woman I recently met at one of the classes.  

 I am trying to decide when to schedule my exchange.  I am waiting till after the summer so that I can enjoy the short NE summer (though if this rain does not stop soon maybe I will change my mind).  I also have to decide on what I want to do about nipples.  Create an actual nipple or just a tattoo or nothing.  

Gotta go, DS is calling.

Renrel 

Renrel - thanks for your post.  I was just going to ask if anyone still has aches.  I mostly sit at work but it's a struggle to stand afterward.  My hips and lower back or so weak and sore, it have to go a few steps before I am really on my legs.  My mastectomy chest and arm pains have been more difficult lately too.  I look like my sickly grandma used to, whevener I struggle to get out of my car, turn to look behind me or stand up from a chair.  I groan but at least I don't wheaze......not usually anyway.

Holtbolt - yahoo!!!! I am so pleased. Please share with us how he reacted when you told him.

Holt!  You made me tear up reading about your son's reaction.  And you're right, there is some sort of karmic equality to it.  I'm thrilled for you and your son.

Nancy--I'll be seeing you over on the tamoxifen thread.  I just started tonight.

Catherine

Lisa--Look forward to seeing you on the Bottle of Tamoxifen thread.  There's a lot of useful info over there.  It'll be nice to see some of the Jewels over there!  Nancy started tamox last Friday and she is on that thread as well.

Catherine

Nancy, the long road of fatgue frustrates me too.  My Onc told me a year.  Looking more normal so people at work really kind of expect 100%.

Renrel: glad to hear someone else mention the word finding thing.  I can even have it in my head, start talking and lose it

Hotbolt, I needed a little warning before reading your post, I hate it when I cry before my second cup of coffee.  So happy for you all.

For those of you starting tamox, I got scared reading a lot of the posts on the boards, and have been so relieved at what an almost nothing it has been.  At one point I took all the pills out and counted them to make sure my chemo brain hadn't meants I'd forgotten to take a bunch because I couldn't tell much of a difference.  After about a month the hot flashes got fierce and I broke down and called the ONc (so sick of taking meds) and started neurontin which I think is a wonder drug.  So, feeling good on it.  Quite frankly after the time I had with chemo I feel like I had an easy time on tamox coming to me.  My Onc said the hot flashes will peak at about 90 days then start getting better.   

kmmd, my journey with the tamoxifen has been event-free also. I am having hot flashes but I've had worse with the real menopause and chemo-pause! (I'm taking the tamoxifen for 1-2 years because I have osteoporisis--then I'll switch).

I am having some luck with shedding the 15 lbs gained during chemo---I'm down almost 10 lbs. since end of April! I am having problems with fluid retention that I didn't have pre-BC. Don't know if that is the tamox or a left over SE from chemo.

Plutz, Recovering from my mastectomy was not bad. I had a lumpectomy three weeks before that was rough because of the removal of the nodes. I recovered from the mastectomy much faster--very little pain.

Catherine, I've noticed it too.  I think I commented on it here a several weeks back.  There's almost a pressure to do chemo and quit hormonal therapy.  A lot of don't do hormonal therapy talk on several threads.  There are a lot of good studies showing that most ER + women will get more benefit from hormonal then from chemo.  Not saying we don't benefit from chemo, but we get even more from the hormonal and I worry sometimes about people getting hyped up and quitting based on what they're getting here.  By the time we finish chemo we often identify more with the women here then our docs and I worry about the snap decisions that can sometimes bring if it overwhelmingly sounds like everyone quits it and has trouble on it.  People doing well don't often post.  They get on with their lives. It is a personal decision for everyone, just needs to be a considered decision.  So, anyway, hopefully we can all encourage each other on it here the way we got each other through chemo

Holtbolt:  I am extremely happy to hear Max won.  Wow.  What a fun time you guys will have.  His reaction to the news was priceless. 

Chemobrain and fatigue are major problems for me too.  It is funny the things I say and do because of the chemobrain and I try to make light of them but I have to admit I do sometimes worry I will always be like this and that is scary.

I get worn out so easily I can't stand it and boy do I get grouchy when I get tired.

Well off to Minnesota tomorrow to do nothing but sit by the lake and relax. I hope.

Goodnight ladies.

Patti

Holtbolt - What a beautiful moment with your son.  That is the best.  I't's so great that you guys won.  

Lisa, Catherine, BevR and kmmd - Tonight I will have my 11th does of Tamox.  I remember now I started on a Saturday.  I feel fine.  I do have hot flashes, as I did before Tamox.  I can feel some of my anxiety problems cropping up.  It's no big deal and if this is the worst of it and it improves over time, no problem.  I'm a little more tired.  I feel I'm in this post-chemo transition vortex.  It's sometimes hard to tell what is causing tiredness, anxiety or hot flashes....is it from the chemo, the Tamox or from being more active and working full-time?  I really am unsure and trying to sort it all out. I too have heard so much about women having more benefit from Tamox than from chemo.  I am happy that it's widely available and is the current standard of treatment.  It's good news.

plutz - my bilateral included one-step implant reconstruction and took over 3 hours.  I think 10 nodes were removed with that surgery.  I did go home the following day.  I had drainage tubes in place for about 3 weeks afterward, most women have them for about a week.  Little did I know I am an excellent lymph producer - too bad.  I wouldn't say it was a breeze but I was fine.  I took the pain meds for the first week or so.  In my case I couldn't drive for about 3 weeks.  It took me about 2 weeks before I could lift my arms above my shoulders, but I had more done than ddlatt.  I would say clean the house, get organized before hand and plan to have some help for a while.  BF washed my hair for me couple of nights before I could really raise my arms.  Those kinds of things were really helpful.  I had mine during a work holiday close-down and ended up being home from work nearly 2 months!  4 weeks would have been just fine.  If I had it to do all over again, I might not change a thing.  It was all good.       

Ah the chemobrain.  I have to work out a post-chemo ADA work accommodation.  I have a lot on my mind about that and a couple of meetings coming up.  I feel a more lucid than I did during chemo but I'm still pretty foggy.  My brain seems to take naps, where all of a sudden I'm just really not comprehending anything, then I seem to come to and realize what's going on.  Remembering names has been hard often.  Other times I have normal cognition at an abnormally slow pace.  I am trying to gear up for dealing with all of this.  I would guess for at least another 6 months, but who really knows.