Starting Chemo May 2008

ewesterman

Angels,

Here, in Seattle, as a triple positive, I get a mam every six moths and a breast MRI every six months. It's the norm for now......I am glad you have BRCA results. I am not happy about the results. I am glad you have the information. YES, do take out the ovaries. It's a dental appointment. It is done laperoscopically. It is no biggy. It might be an emotional biggy but it is an easy surgery. PLUS, you will lower your chances of cancer returning. Ovaries be gone. I am struggling with the ideal of taking off the other breast just as you will be struggling but I am pleased you know and that you can make your decision based on knowledge. Love you. You are a megasurvivor. Survive and go forward dear one. Your strength is bolstered by all of us.

ellenoire

Angels what everyone else above me said...... yuck... sorry. ;(

xN

familyroks

Ditto what Eddie said.  Having the ovaries out, while it might be emotional for some, it can be physically easy peasy.  I had mine removed just last month and that was because my ovaries decided to work again after 18 months of inactivity.  Good riddance I say!

I also want to say, that while I'm not happy with your BRCA results, it isn't the end all.  Use it as a tool of power.  For you and the females in your family.  You have the power of knowledge.  And you know we women are all about power!  Having that test done was never recommended for me and its always in the back of my head for my two girls.  My oldest, the ripe young age of 23, may have the option to have it done and she asked me if she should.  I said if she could...go for it.  Knowledge is our best weapon.  It will devastate me if its positive but I also know that with that she can get better screening options and will have the power to make decisions to protect herself in the future.

 (((Hugs)))

drcrisc

All the same coming to you Angels - so sorry it's positive but like Adrienne said, use that knowledge to give you power!  Hugs to you!!

kerry_lamb

Lamby-love in buckets from Tasmaniaxxxxxxxxxxx

rock

Angels,

It bothers me that you or anyone is given your results on the phone. They spent two hours reviewing my results with me and providing me with guidance on how to inform my enormous family, gave me a sample letter, and Yelena made herself available by phone to my two sisters (both BRCA+) and a couple aunts (at least three of whom are BRCA+).

If you want to talk to someone about telling kids, I can put you in touch with my older sister. Three of her four children (2 boys, 2 girls) were very young adults (early twenties, including my niece who was engaged to be married), and the fourth is eleven.

I don't know what to say, Angels.  Because the last thing I want to do is tell you how to feel or what to do.  Just know that there IS time.  I felt like there was a ticking time bomb in my body waiting to go off but that feeling subsided and I am very glad that I didn't make any decisions when I was in that state of fear.  Take good care of yourself and if you have any questions, feel free to call me or shoot me a message! (Though I don't check the boards as regularly as I used to.)

I am still happy with my decisions -- for now -- to keep both breasts and my ovaries, though I respect that every person's decision is her own.  The best decision is that which is right for you. And BRCA2 and BRCA1 mutations have different risk profiles so I am not much use there.

 Thinking of you. Rock

 Love ya guts, people, but to clarify: it is not just the emotional attachment to my body parts that is holding me from removing my ovaries. It is things like "What will the physical reaction be to my body entering menopause all at one time?" (My body is super-sensitive to fluctations in hormones so the thought of surgical menopause is NOT appealling to me, plus, I don't think my risk of ovarian cancer in the next five years is that high...) And "What if I have the surgical complications -- no blood clotting -- that I had after the last 'routine' procedure?"

I will see a high-risk ob/gyn onco a week from today and will learn more. I am trying not to sound/feel defensive. And failing!

I am really happy that you all feel good about your decisions. I think we each have our own definitions of "unacceptable risk" or different perspectives on how much risk we are comfortable living with. Even in my own family, three sisters, all BRCA2+, three different decisions (I am only one with cancer):

Sister One (50): Ovaries removed. Kept breasts

Sister Two/me (43): Lumpectomy. Kept breasts and ovaries. Tamoxifen

Sister Three (41): Proph masectomies. Kept ovaries.(I think she's on Tamoxifen)

Each of us well-informed, well-read. Each of us experts in our own lives. Three sisters. Three different decisions.

rock

Love ya guts, people, but to clarify: it is not just the emotional attachment to my body parts that is holding me from removing my ovaries. It is things like "What will the physical reaction be to my body entering menopause all at one time?" (My body is super-sensitive to fluctations in hormones so the thought of surgical menopause is NOT appealling to me, plus, I don't think my risk of ovarian cancer in the next five years is that high...) And "What if I have the surgical complications -- no blood clotting -- that I had after the last 'routine' procedure?" 

I will see a high-risk ob/gyn onco a week from today and will learn more.  I am trying not to sound/feel defensive.  And failing!

I am really happy that you all feel good about your decisions.  I think we each have our own definitions of "unacceptable risk" or different perspectives on how much risk we are comfortable living with. Even in my own family, three sisters, all BRCA2+, three different decisions (I am only one with cancer):

Sister One (50): Ovaries removed. Kept breasts

Sister Two/me (43): Lumpectomy. Kept breasts and ovaries. Tamoxifen

Sister Three (41): Proph masectomies.  Kept ovaries.(I think she's on Tamoxifen)

Each of us well-informed, well-read. Each of us experts in our own lives.  Three sisters. Three different decisions.

sueper13

Angels so sorry to hear this, I know it is not what you wanted.  As rock, I wouldn't presume to tell you what to do or how to feel just know that we are here.  Love to all,

Sue

rock

Thanks, Sue. I deleted my posts because I felt they were distractng.  So let me replace them with "What Sue said."

Keep-able excerpts from my earlier posts:

If you want to talk to someone about telling kids, I can put you in touch with my older sister. Three of her four children (2 boys, 2 girls) were very young adults (early twenties, including my niece who was engaged to be married), and the fourth is eleven.

I don't know what to say, Angels. Because the last thing I want to do is tell you how to feel or what to do. Just know that there IS time. I felt like there was a ticking time bomb in my body waiting to go off but that feeling subsided and I am very glad that I didn't make any decisions when I was in that state of fear. Take good care of yourself and if you have any questions, feel free to call me or shoot me a message! (Though I don't check the boards as regularly as I used to.)

angelsaboveus

Thank-you to a bunch of wonderful , wise and caring women.

And you are right ...knowledge is power....this positive can be made a positive thing .....as it only opens doors to a another way to achieve a healthier cancer free life for myself , our daughter and the two boys. I also know I had no control of my genetic make up and whether I have passed it on.....some other power that be had already figured that out.

It is a blue sky, sunny, go outside, go dig in the dirt, listen to the birds sing, enjoy life kind of  Friday, I hope you all have that same kind of day !

JulieC

Angels - count me in on what everyone else said.  I'm glad you finally received your results, even though it wasn't the answer you wanted.  But now you have an answer and can go from there now or in the future.  I'm here to offer any kind of support that you want.  Right now I think I will give you a hug!

Enjoy your blue skies.  We are a little chillier today, but the kids only had a half day of school  with only a full week left.  Where did the year go?

Love you all - Julie

Roxi65229

Hi guys. I've been gone way too long. I find it very difficult to log on and I sincerely apologize for not keeping up with you all. Angels, I'm so sorry to hear the results of your brca test. I'm just so thankful that they have this test available. Love you all.

Mary  

otter

Well.  In the grand scheme of life, the b*tch you are about to hear is no big deal -- especially when it's up against a BRCA1 mutation or a "distant recurrence" or those happier things, like moving into a new home or traveling halfway around the world to meet your virtual sisters.

But, I'm p*ssed off about it, all the same.

I had my hair cut today.  I needed this to be a really good haircut -- no experiments, no "oops", no reassurance that it'll grow out quickly, no fussing afterward to try to get that little curly place over my left ear to lie flat.  It needed to be a good cut 'cause Jen has promised to take lots of photos when we meet in TX next month.  So in order not to break her camera lens, we all have to look our best.

Or maybe not.  Most assuredly not otter, it seems.  My haircut turned out to be a near-scalping.  I don't know what happened.  My haircut-person/hairdresser has been cutting my hair for many years, and she knows my likes and dislikes (and the fact that I usually like the "before" pictures better than the "after" ones).  She is admittedly a bit confused (as I am) about exactly what I want, now that my hair has grown back and is perfectly straight.

Anyway, she cut it waaaaaay too short today -- on top, on the sides over my ears, and in back. Everything I asked her not to do, she did, and vice versa.  My dh keeps telling me it will be okay ... it will grow back.  But not fast enough!  Can I make it grow back faster if I pull on it?  Last time I did that, my hair came out in tufts; so maybe that's not a good idea.  I was really starting to like my hair the way it is (was), as it was getting a bit longer and thicker -- it just needed to be trimmed.  NOT SCALPED!!!  I know the salon is collecting hair to send to the Gulf Coast to soak up oil, but, sheesh.

End of rant.  Time for dinner.  I'll be fine, really.  It's just hair, right?  And it's still plugged in at the ends.  Hugs, everybody...

otter

(Edited to add:  I feel so foolish, whining about a bad haircut.  Didn't we all swear we'd never complain about a bad haircut ever again?  But I just looked in the mirror and it's as awful as it was an hour ago.  <sniff>)

Sable

*note to self.... extra good pics of otter for sacrificing her hair ;o)

rock

Pierre got scalped at his last trip to the barbershop.  But two weeks later and he is extremely handsome! Of course, pierre is a man so this is a bit different situation.  But i guess what I'm saying is SOMETIMES even a quarter-inch of growth can make all teh difference in the world.  I was not wild about my last cut but it has "grown on me", if you will.  It's a little softer. 

Still, I can completely relate to the feeling of being ignored and winding up with a less-than-satisfactory 'do which requires us to think about our hair more than we ever intended to.

angelsaboveus

Otter ,

that sucks when you put your trust and your hair in someones hands  and they either don't listen to what you want or don't pay attention to what they are doing.  Hopefully it will grow fast this time and even out to how you like it.

I know after my cuts I always go home to undo what they have done , just this week I had mine cut...I said no poof...I came out of their with poof so had to go home and fix it. 

lewing

Just checking in after a couple of weeks away from this board, so I'm hearing for the first time about Angel's brca result.  So sorry you had to get bad news.  I'm looking for words and not finding them, so instead, I'm sending sunshine and hugs your way, OK?

Linda

kerry_lamb

Otter..the hair thang is simply the lot of The Woman. Lets face it...even in pre BC days (ohhhhh I long for those days....) we whinged about our hair! I know I did! hair DOES grow...I know what this is about: this is about REAL FLESH AND BLOOD SISTERS!!!! If we met you mid-chemo...or 6 months out..would you worry about your hair/lack thereof?? OF COURSE YOU WOULD!! You're a girl!!! I. for one, cannot wait to come half-way across the world to meet you and I don't give a Texan good dagnabbit! what your hair looks like!!!   Footnote: change hairdressers. It's way too early for a straw-that-breaks-the-camel's-back!!! You have suffered enough.  @#$@#!!*&^'s sake!! xxxxxxFourteen days !xx

Sable

Speaking of hair......... I was looking thru style books at the hair dresser last week.... according to them I have long hair... so why do I still feel bald??

sueper13

Hair, Schmair...just bring YOU--that's all that matters.  I hear you, though.  I got "pixied" on my first haircut and was really pissed off.  Jen, maybe u still feel bald because you were so beautiful bald--or maybe when u see your sisters next month and get hugs you will feel like you have long hair!

I have been re-reading this whole thread, since the beginning, just to remind me how we felt and how much the support has meant to me....and it is making me fall in love with all of you all over again.

Love you all,

Sue

Jeano77

bump - could not find us

otter

Hey, Jeano -- we weren't here 'cause we were in TX! 

For those of you reading this who don't know the May '08 chemo group, we just got back from a rendezvous/retreat at the home of one of our May '08 sisters.  Most of the group (13 of 19 women) were able to be there; those who couldn't attend stayed involved by FB chatting or, better yet, Skype sessions.  It was fantastic.  I can't say enough wonderful things about those 4 days, and what we experienced, and how I feel about it now that I'm home again.  KOLACHES RULE!!!

otter

Sable

:O)

rock

We're not posting cuz the wonderful women of May '08 took our thread to Facebook. Yeah, cuz that's how we roll! 

rock

Visiting this thread is like going to the house where you grew up and finding it empty. 

We laughed, we cried, we compared notes... and we still do. We just do it on Facebook.

Lots of love and strength to whoever might be reading this.

otter

rock, the house might have seemed empty, but that was because we were all out at the pool in the back yard. Didn't you hear the shouts and the laughter?

Echoing what rock said:  there is life after chemo!

otter

sueper13

Turns out the house is not empty after all.  I've been re-reading, just..uh, because. Love you guys and amen to life after chemo!

Afterthought: how many of us are here?

drcrisc

Sue - I think there were about 20 originally.  Missing Dana and Randie right now...

otter

I don't know how many of us still stop by this thread, or even BCO, any more.  And, yes, today the house does seem empty.... 

I am thinking Dana is out in the yard, filling the bird feeders and picking up after the squirrels.  Oh, and making sure those bedding plants will be ready to set out as soon as the weather is warm enough.  She is piling all the winter branches so the rabbits will have a place to hide, and checking on the supply of deer corn.  Yes, it's a busy day; but I see Randie out there helping her. It's a bright, sunny, warm day, and they look relaxed and comfortable.

otter

Anonymous

Hey Girls, I am hardly ever here either but when I am I do occasionally check this place where I have always enjoyed coming to see you all. I am so sorry to hear about Dana. It was so nice that you all got to see her, a time I'm sure you will all cherish. My thoughts and prayers are with you all and with Dana's family.