2005 ROCK-TOBER CHEMO GIRLS

ake

hi ladies,

i'm really feeling in a rut right now. i've been playing phone tag with my onc. and i know she is going to want to discuss ovarian suppression with me since i got my period. i am so scared this is going to impact having any kind of fertility help...my husband and i really want to prepare for surrogacy, but if my ovaries are shut down, that will not be an option. i'm so down about all this. having a hard time staying positive. and i feel really alone because i don't know who to talk to about this...my parents get upset, understandably, because they hate to see me so sad, my husband is sad on his own because he hates that we have to stress about how, when, if to have kids. i just feel sad and emotionally drained. i feel like whenever i try to slow down, something happens that makes me have to speed up all over again. like, i slow down on vacation, get my period, and whammo...now i'm trying to get in to see my onc. so we can discuss what this means. i'm so frustrated.

-amy

RoseMarie

Ok, I'm not a "cussing" gal but....why does this DAMN thing always lose my post when I hit the DAMN back button?!!!!!!!!!! I feel much better, damn it....

I was on my way to posting something for everyone.... kl;dfgmnlzjklsl;hkdjkl'gjkl'....that was frustration...

RoseMarie

Amy, you are in my thoughts and prayers!!!! I am so sorry you are going through this!!!! This may not help but there's a lot of love coming to you right now from me!!!

RoseMarie

Laura, I need to take your advice...I guess I should start typing in another program and just keep flipping back and forth. It is so frustrating to have a lengthy post disappear...sounds like you had a wonderful time at the walk. I can so relate to feeling emotional - just getting my t-shirt for the walk for life was soooo emotional for me.
Kelly - so sorry to hear abot your muga! You're in my thoughts and prayers too!!!
Marymelody - so good to put a face to the name!
Debbie - wow girl! I'm glad you were up to going out after your ordeal!
Can't remember what else I wrote on my first go round...you are all in my thoughts and in my HEART!!
love,
RoseMarie

debbie444

Tda ( by the way - are you going to tell us your before cancer name??) I think you have a good outlook - not a superficial one. The way i look on it 95% of the time is, I HAD cancer, probably what with my age it will try and raise its head again and I will deal with it again. In the meantime this is my cancer free time and i am damn well not going to let it spoil this bit of my life as well! ( the other 5% of the time i get scared and think i wont see Christmas!)
Medicene is changing theat fast that if it does come back there will be new things to try and I will be near the front of the queue because i have a history.
Mary - my main thing to sat would be to make people realise that you are never too young to get this horrible beast - dont let the drs fob you off. If it was there wife/daughter sat there with a lump would they just'watch' it?
Amy - my heart goes out to you. I sometimes look at my kids and think its not fair that they have had to deal with this mess so young but I am so greatful for them. Your time will come - the Octoberites will send you all the positive thoughts and love we can.
Have been and bought myself some new PJs for when i go back into hospital. If i have to go in again i will at least look decent! I have promised Roger that i wont pass out in secret in the toilets like last time and not tell anyone so i can get out in 24hrs ( well it was Catherines birthday!) I have learnt my lesson - ended up back in for 2 weeks after complications which my husband keeps trying to pin on my rush to get out!!
I am going to enjoy the sunshine - its England, our Summer may finish this weekend!
Take care everyone
Debbie
P.s - where is Graycie?

Anonymous

DAMN -

I hate what this wretched disease dontinues to do.

Amy -

Other than "we are here for you"...I don't know what to say.

Laura

ake

ok, i'm feeling a little bit better. i spoke to my onc. this morning and she said it's completely normal to have my period on tamoxifen. the trick is...she said that she would like me to consider participating in the SOFT trial, which focuses on premenopausal women and hormone therapy. if i do the clinical trial, i would be in one of 3 randomized groups...one that is just tamoxifen, one that is tamoxifen and ovarian suppression, and one that is an aromatase inhibitor and ovarian suppression. so, there is a good chance my ovaries will be shut down. how do i make this decision? is anyone else doing a clinical trial?

thanks for the support ladies. it means the world.

love,
amy

ake

i passed my psychology boards

ravdeb

AH HAH!!! I was thinking like your onc about it being normal to have your period! I shoulda been a doctor!

Never was on a clinical trial so I don't know what to say except to do what is good for YOU for your time right now. What does your dh think? That's really what will count in the end.

I just read through all the entries here...one of the themes here is that we have an awful lot of young women with cancer these days. Is is because we have the tests to find it out and more women are aware, doing self-checks, etc? Or is bc more common these days?

Another theme here is ...are we different after being diagnosed and are we in denial, superficial, or have we accepted this cancer as a part of our lives.

I have often thought that I've been in denial. One reason could be that my prognosis is very good so all the doctors I spoke with were very optimistic. So, maybe I'm just being optimistic, too. (not that I don't have those days when I'm teary about the whole thing).

And...okay..maybe it's because of my age (51) but I feel like a very different person today than I was in Sept when I was diagnosed. I feel like I know more about life, that I understand it better than I did and better than those who have not experienced a life-theatening issue. Yea..I think I'm tougher, smarter, stronger and..... physically much older, unfortunately, suffering from aches and pains that I never had before chemo.

But, I'm okay. I feel like I can do just about anything now..much more confident now.

I wish you all well, and all the tough decisions that you have to make will suddenly be easy and you'll know you have done the right thing.

Anonymous

Amy, I was asked to participate in that study but I declined. I didn't want to be randomized. I told my onc I didn't want to be in the suppression group, I wanted to be in the group that was having ovaries out and taking Tamoxifen. She said you cannot choose. So, I am getting ovaries out, taking tamoxifen and not being in the study!!

I have my daughter already, so having the ovaries out is fine for me and it means for sure I won't get ovarian cancer.

Anonymous

E V E R Y O N E -

Here's an article re: life after bc - well written and accurate (IMO) - thought you gals may want to read it:

http://www.healthology.com/focus_article...ver&spg=FLA

AMY -
Congrats on the boards! You rock!

Laura

sherryhaire

Amy--Congrats on passing your boards hope you did something fun to celebrate!!!!

maryannecb

Amy great news about your boards. Life has a way of sorting out. Try not to fix it all overnight.

I am not in a study and as my cancer centre is small I don't even know if any are available. Your fertility sounds super important so be careful to protect what you can. It seems soon to have thoughts of pregnancy though.My advice is to spend the next few years becoming as healthy as you can, then think about children. You are still young and have time.

Debbie, I hope your surgery goes well and take your time post op.

Still feeling pretty tired and washed out. Hope this passes.

Fists up!

ake

maryanne....what you said is compeltely true...i'm trying to fix everything at once....it's the part of me that can't accept that i had cancer, so i try to get control over every single thing in my life. but, then i just feel exhausted. it's not worth it, so i'm going to try to relax. and i'm leaning more towards not being in the study because i want my life to be as mine as possible.

thank you ladies for helping me so much this week.

love you all,
amy

Paula15089

Amy,
I wasnt even given a choice of supressing my ovaries or not, my onc (actually had a second opinion with a very respected onc professor too) feels that being so young, and highly est +ve (i am 95% +ve) is a given for ovarian supression. They both actually told me than having Zoladex is overall easier on your body than Tamoxifen alone, since you hormones just plummet and stay down, rather than go up and down as they can with Tamoxifen.
I also questioned why i should be taking Tamox and not Armidex if i am basically menopausal anyway, and was given some explanation... but thanks to my chemo brain i can't remember what it was. Bones protection?

PM me if you want to chat more about that stuff..
good luck whatever you decide!

anyway, just wanted to tell you, that Zoladex is doable, I've got no side effects apart from mild hot flashes. Also, i was def told we can stop the injections in two years should i decide to try for kids.

TracyNY

Congratulations Amy! You licenced psychologist you!! Relish your success. I hope things work out for you with the fertility issues. It must be hard in a new marriage with all the expectations of having a family to have a spanner thrown in the works by BC. I am praying that the desires of your heart will be granted.

Debbie444: My name is Tracy. Tracy D. Appia, born in August 1966, thus my screen name tda866.

Appia is my first ex-husband's name, I didn't take my second husband's name because it had too many consonents in it! It was hard enough to get people to pronounce Appia correctly, far less that mouthful I was getting into.

I went to a funeral yesterday for my first husband's brother. He was an elevator repairman and fell down the shaft and died. As much as I hate funerals, that was enough stress without the added element of seeing my in-laws for the first time in a decade. I say there are ex-husbands and wives, but in-laws are forever!

I went for my ex who was very supportive of me through my crisis. I think we're even now, thinking about it woke me up at 4:30am. I am so tired now. Guess who's going to work to do nothing today?!

marymelodi

Clap-clap-clap-clap-clap!!!!

That's for you Amy - and a big cyber-hug for your achievement!! We are all proud of you and you should give yourself an extra dose of PRIDE in having reached this success in the midst of you treatment, etc.

I am praying that you decisions and plans will work out for the best and that you will be able to choose the best plan for your life.

Mary

TracyNY

I hope this means that everyone is out enjoying the weather! Very low posts for the day. Bumping this back up.

Anonymous

Tracy D.... nope, I am working.

For some reason, it seems under my arm hurts. It's not the actual scar but inside. I am supposing it is scar tissue under the skin.

Amy, so when do you start taking on patients? You can start with us!!

ake

o

TracyNY

I wanted to be a psychologist at one time, I had so many friends calling me for advice that I figured I should get paid for it as I was so skilled at counselling. I went to NYU and got my BA in Psychology and began case management but I found that I could only listen for so long before I was ready to tell the client what I would do if it was me!!

After taking two jobs as a case manager and ending up getting promoted to Director I reckoned that I should stick with the administration route. I did my Master's in Health Care Administration.

Last night I was online looking for fake nipples. I think I'm going to the West Village to the sex shops where the drag queens go and buy myself a pair!! The reviews on the website were positive ++! Today's weather is supposed to be perfect, all the better to be in Manhattan with the headlights beaming!!

ake

as always, you make me laugh the reconstruction of our breasts is one thing, but for some reason, getting the nipples....whether fake or molded or whatever...cracks me up. i'm going on tuesday to discuss this with my plastic surgeon and it's going to be hard not to laugh while we have a serious conversation about my freakin' nipples! good luck with your search for the fake ones...in nyc.. you'll definitely get a good set

maryannecb

I am off to my cottage. It is only 14C but already thinking about jumping in the lake. Tried on my bathing suit and it looks pretty good. It has a poch for the prosthesis and is a scooped neck but not really low. I got it from Lands End online.

Did the survivors Lap last night in The Relay for Life, a fund raiser for the Canadian Cancer Society. It was pretty moving. There were 200 survivors who walked first to the applause of family and participants. Yup , it was a Kleenex occasion. At dusk 100's of candles were lit in memory of people lost to cancer. What a sight.

Good luck with your nipple shopping...

It must feel good to reach your goal Dr.Amy Abeid. I spend a fair amount of my day counselling as well. It can be draining at times, especially now where my problems seem larger than many of theirs. I guess it is really all about coping. Some can cope with only small things where others can rise to any challenge.

tda so good of you to be involved in your exes crisis, probably meant a lot to your inlaws. I still see my ex in laws regularly. I even say I have two mothers in law-after all the divorce was not from them. They even came to my second wedding. We thought it was important for the kids to see they were still important in our lives.

Kelly, my arm pit hurts too. I am doing more lately so hopefullt that is the reason.

My cough is about the same and now I am having a dull pain when I take a deep breath. I hate to think this pneumonitis is getting worse as I really don't want tt take steroids and blow up again. I am within 10 pounds of my goal weight.

Hope you all have a peaceful weekend and talk late Sunday when I return to cyberspace.

Fists up!

Anonymous

Dr Amy will replace Dr. Phil any day now!!

tda, tell us how the nipples turn out. I think after my surgery it will be quite a while before they do the tattoos.

Mary-Anne, hope you have a fun time at your cottage. I was just trying to plan my next foray out in the motorhome. Think I have settled on Lake Piru which is only an hour north of me.

Anonymous

I would like to congratulate Dr. Amy for passing her boards! What an awesome accomplishment!

I have not posted in a while because of depression. I am no longer taking antidepressants, and I am trying to see if the depression will be bearable as the days go on...

It was hard at first. I had really bad anxiety attacks. Then those dwindled down to once every few days. The last one was a week ago and it only lasted a minute.

You see I have to be strong and "smart" before I go back to school in September. My principal is going to "execute" me and I need to be ready to fight back.

I know. You're probably saying, "Why in the world would you like to go through that?" Well, like I said before, I can't give in. I can't let injustice win. Whatever the outcome, I'd like to be able to say that I fought back.

I just wish the sadness would be more bearable.

Anonymous

Brenda, what happened at school that is so effecting you? You have mentioned this 'injustice' before. Hoping you can talk, so we can help.
Love,
kelly

debbie444

Congrats Dr Amy!
Brenda - we are always here.
Just a quick note as I am in hospital by 8.00am tomorrow so am doing 'sort out jobs' now.
See you all soon
Debbie

ravdeb

CONGRATULATIONS AMY!!!!

Just knew it!!! What an inspiration you are to all of us!

ravdeb

Just read through the posts...
Brenda.. hope you are able to cope minus the meds... pm if you need someone to listen...

maryanne..hope you are getting your energy back.Could be you are extra tired because of the pneumonitis? I hope that really is getting better and you can stay off those steroids.

Tomorrow (Monday)is my last rads and then I'm done with treatments. I had a very comforting meeting with my oncologist who I absolutely love.

I have some weird results on my blood test from a month ago and had them done again today. WBC is okay though. The entire blood test results weren't in before I left the cancer center today. She told me to have them fax them to me tomorrow and she would see them on Thurs and decide if I need any follow up on it.

Aches and pains that I am suffering from appear to be the rheumatoid arthritis that was awakened last Dec when I was sick. Luckily the pains are not like they were then (was in a wheelchair then) but my onc seems to think that this is my problem...UGH..I did NOT have this before chemo. She said that they think that sometimes rheumatoid arthritis and other autoimmune disease awaken from chemo.

Otherwise... mammogram and US in Sept and follow up check up in Sept as well. She'll be on maternity leave then which upsets me a bit but there is another onc there who i know, so.... still..would have been nice to have her for my first follow-up. She apologized! She is so very sweet and I love her!

Ran into the onc nurse and she told me to keep on walking 4-5 hours a week..even on my vacation...which I will do.

tda..you crack me up!

Comforting to know we have a doctor in the house!

RoseMarie

Amy - CONGRATULATIONS!! What an accomplishment!!! You're awesome!
Tda - as always, I am chuckling...no, cracking up...hee hee. Hope you're having a great weekend with your head lights on!!
Debbie - here's to a speedy recovery and problem free procedure!!! Lots of love and prayers!!!
Kelly - the pain under my arm comes and goes - mine seems to be all cording. What's been driving me crazy is the itching in the arm pit - I think it's nerve stuff going on and it does not help to scratch! It's so annoying!! Beautiful picture, by the way!!!
Ravdeb - so glad you're finishing rads!! So sorry to hear about the arthritis
Brenda - so sorry you're so down!! Have you talked to your doctor about other meds that may help with the depression but still keep you alert and "strong?" I have no idea if there's such a pill out there but I hate to see you so depressed!!
Mary Anne - hope you're having fun at your cottage!! Hope you're able to relax and rest!!
Everyone else...have a wonderful day....
Oh yeah, someone asked about Graycie in an earlier post...how is she????