Starting Chemo May 2008

Still waiting for doc to calll.. WTF????  I amstarting to think she doesn't like telling bad b=news.  Deal with it baby, you are in oncology for the love of Pete!!!!!!

 Beautiful sunny day here.  FInally we had rain, maybe our pond will fill up.

Okay, gripe of the day.  I will be sending out a global email to family who feel the need to call me at 7 am to see how I am doing....I was sleeping!!!!!!!!!!!  The only reason I answered was that the phone was at my head and it scared the shite out of me as I jumped out of the 1 1/2 hour nap I was taking!!!  The only thing I coul guess was that although it was 7 am for me, for my uncle it was 10, so he thought I should be up.  Gotta love that!

Hey, am working on my facebook page, so I am gonna run!! randie

Morning girls! The Wattle Bird...hmmm...how to describe. Probably best to google images. Might be under Australian Wattle Bird. The sound is the problem, especially at 4am, hence the need for decapitation! Any other time of day is actually amusing and strangely comforting. It makes a 'S-Q-U-A--A-A-A-A-R-K!' and then a kind of repeated hiccup-squark. We have a big male at school who has been there for years and his favorite thing to do (for his own amusement) is to hide in the big grevillia bush beside the main entrance and 'S-Q-A-A-A-A-A-R-K!!' at the poor unsuspecting person coming out. 

holy crap we talk a lot! I am off to a play for the night.. I will read more later! love to all!

 xoN

How about this for another good omen?  I got a Christmas card from Jen today (thanks, hon, so sweet!) but I had to look twice at the name and address because she lives in the same town as several of my aunts and uncles!  I thought she was a cousin I had never met!!  I think it's a good sign, right?  Because we are family here.

ranD,

We are all so right here with you.  Planning graduations, reunions and weddings.  Otter, I'll bring pear honey AND amaretto for  the tea.....and we'll tell stories about our lives, and hold ranD's hands, and just hold on to each other.  RanD, you are in my prayers, every day, I wish it were different.  And yes, I think the fecking fifteen should have caught their attention!

Much love to all of you.  Rock, nice to see you--and the way you write, I CAN see you....Eddie--miss you!  Ramble again!

Love,

Sue

Jean, I was also surprised to read that you've got a surgery date scheduled . . . I remember a discussion about reconstruction weeks (and pages and pages and pages ago), but not that you'd made the decision to go for it.  What type of recon are you doing?

The farther out I get from my original surgery, the more the void on my left side bothers me.  It doesn't bother me HORRIBLY, and with most clothes, no one would know (I never had cleavage worth speaking of, and if I happen to wear something low-cut that affords a glimpse of the gap between my flat chest and my foob, and someone is shocked/repulsed by it, well, they shouldn't have been looking down my damn shirt in the first place!).  But, yeah, it bothers me.  I still get a jolt when the mast bra comes off, or I step out of the shower, and look down to see . . . nothing.  So you'd think I'd be looking into reconstruction.  But so far, I haven't been able to bring myself to do that.  I'm guess I'm waiting for some brilliant surgical mind to come up with a magic wand technique: no cutting (or just a little - hey, I'm realistic), no sacrificing muscle, quick recovery, 100% success rate, looks totally natural, lasts forever.  

In the meantime, I'm slowly starting to give more thought to the options that actually exist, and the experiences of women who are more realistic/less chickenshit than me. 

Randie, I'm thinking of you.  There's a blog that I check from time to time that you might be interested in: it's called "The Assertive Cancer Patient" (www.assertivepatient.com) and it's by a woman who's been living, and living WELL, with metastatic bc for a long time.  Her slogan is, "Living with cancer . . . and an attitude" (hey, that could be OUR slogan, too).  In addition to just being interesting, she has a ton of experience fighting with insurance companies and hospitals and government programs, and freely shares her advice and tips with others.  (Eddie, she lives up your way, in Seattle.)

Linda

P.S. It's COOOOLD again here.  Any bluebirds would freeze their tailfeathers (and a bit more) off.

May ladies, here I am, sort of on the fringes of your group peeking in, feeling a bit like a snoop, so I need to get out of lurkdom and say something.  You are all the most incredible women!  I have never ever seen such an outpouring of support and rightous anger and LOVE as I have on these pages.  I am blessed with my own online support network -- my working moms group has been together for nearly 7 years -- but even with those dear friends (the ones who made me a quilt!) I have never seen the level of love and sharing of pain that you guys have here.  Obviously, it is different when you are closer to it -- my friends can cry and send me cards and candles, but they haven't sat in that chemo chair themselves so they don't understand how close all of us are to a scary diagnosis.

Which brings me to RanD -- I don't really "know" you but I also want to send lots of strength and positive vibes and support. I am also the mom of a nearly-eight-year-old boy and the idea of a recurrence is just terrifying.  I do want to share that I have a local friend who I've met through this board, who has been Stage IV for two years now and is doing great, healthy and energetic and positive. I hope that all the good energy and prayers from this group will push you into that category SOON.

I also wanted to commisserate with the other "uniboobs" out there. Linda, I love what you said about looking down your shirt!  I think I've had a relatively easy time dealing with it because I've been planning for recon from the time I learned I would need a mastectomy. (I also had a reduction on the other side at the same time and I love my smaller breast, so that has helped with my attitude.)  My DIEP is scheduled for just two short months from now -- March 25 to be exact.  I would be happy to share my experience with anyone who is considering that procedure, if it will help you in making your decision. I am getting nervous of course, but feeling positive that as a relatively young (42) and healthy person, all will go smoothly.  Now if I can force myself to do more abdominal exercises I'd be in business....

Thank you for the opportunity to peer into your incredible circle from the sidelines, you are all so funny and warm and strong, it is really inspiring!

Lauren

They numb the area up, but the first 2 "primitive" taps that didn't use ultrasound where no more annoying then a blood draw.  Apparently, when they use the ultrasound, the docs try and get cute and put the needle in at more of an angle which is where the pain comes from. At lest that's what the nurse told me after the fact.

I actually told the doc that he had one last shot and I was pulling the tube out myself and running back to the onc ward and have them finish it there.  Good thing I had my dh waiting in the lobby, don;t think he would have handled it to well without resorting to husband rage.lol.

I was yelling so loud that they had to stop and shut the back doors to my room.  I think I completely freaked them out, especially afterwards when I told them that I had a really high pain tolerance and this hurt more than childbirth without an epidural. What pricks doctors can be....lol..literally and figuratively

ran

(((ranD))) .  This may be a stupid question, but can they put in a semi-permanent drain so that you don't have to keep going through this ordeal?  I think I'd have to have them put me under.  Putting someone through that much pain is assinine.

I am also interested in the recon topic.  My BS gave me the name of a PS but I haven't had the nerve to call yet.  I hate my foob, so never wear it.  It makes my scar tender, moves around and I'm just always aware of it.  Not wearing it limits my wardrobe possibilities, especially in the coming Summer.  The thought of another surgery.....ugh.  More scars....great.

Lauren - Glad you came out of lurkdom.  Welcome!

Lauren, I remember you from the April thread.  How's your hair coming in? I remember that was very traumatic for you.   Let me/us know about your DIEP as I am choosing that option as well.  Right prophy mast, bilateral DIEP, sometime in Aprill or May.  Hope yours is effortless and you are happy with the results. Oh, and welcome! I agree, these women have saved my sanity.  (Love you all)....

Having a friend come to visit for a week in February.  She lives in Australia.  We've been friends since we were 13, and I haven't seen her since 2004.  Also another friend, Kim is coming for 1 night, old high school friend, that I haven't SEEN since high school.  I'm doing some crazy cleaning this and next weekend to get the house ready.  I have a lot of anxiety because the last time Kim saw me I was thin and young, with long hair and two boobs.... at the same time they both supported me online through chemo and I realize how shallow the previous sentence sounds.  It's the me inside they want to spend time with.  Still, sometimes it is hard for me to feel "good enough", ya  know?

Thanks for letting me vent that.  Off to clean some more.  Love you all very much.

Sue

Sue, on feeling nervous about seeing your old high school friend . . . you may be older and not as thin and have one less boob than in high school, but (a) you're still beautiful (those legs!!!!) and (b) you're a whole lot more interesting now.   (Not to insult your high school self, but let's face it: high school kids are pretty boring.  Just check out a random teenager's Facebook, if they'll let you.)  Mainly, I'm so impressed that you've managed to stay in touch with a high school friend, through the years and across distance.  There's no one from those days that I'm still in touch with.

Noelle, on fussing with foobs in public . . . I confess, I do that sometimes (even though I'm a straight woman).  I'll forget it's supposed to pass for an eroticized part of my body, and treat it as the fashion accessory it is.  (Then I'll snap to, and feel embarrassed.)

Linda

Jen - We're talking about helping ranD out. Forget the tight squeeze, I'll do a Lorena Bobbit on her onco. Please forgive me, I couldn't help it.

Ooh, that's better than shovels any day!

Cristine, I'm right here!  I'm tring to find an on-line recording of a wattle bird to post so RanD can download it to an iPod and play it at her next doc's visit.  No luck so far.  Anybody have a link?

As for being nervous about letting old friends see us...  Karin knows how self-conscious I am, even now.  I still haven't sent her a pic for her collage.  And, one of my dear relatives asked my dh to set up Skype on our computers so she could talk to/see us.  My dh set it up and it seems to work fine, although our connection is too slow for the image to be clear.

But, me?  Now I'm fretting about what I look like when I'm lounging around the house, not expecting company or video calls.   Good thing the Skype image is so pixelated!

So, how many of y'all are on Facebook?  I think I'm almost ready to launch into it.  Should I use my real name?  I don't want to use "otter", since that's my BCO name.  Would you be able to find me?  How can I find you?  (Sheesh.  Talk about a rookie.)

Speaking of otters (rock, are you keeping up with this?):  I found out the other day that my "Native American" zodiac sign is ... get this:  an otter.  Who cares if I don't have any Native American blood in me--can I keep my zodiac sign anyway?  My "traditional" astrological sign is Aquarius, which works, too; "otter" is even better.

Ahem.  Recon?  Do I have to?  No, I didn't think so.  There is no way I'm lettin' 'em cut into my chest again.  Unless something bad happens on the other side, of course.

I have to admit that it is sort of quirky to see myself totally flat on one side and uniboob on the other.  And, I have to admit that I'm way less than 100% happy with the prosthesis/mast bra situation.  I bought a $$$ foob last fall that I've worn exactly ... zero times.  I bought two mast bras from the same fitter, and neither one is comfortable.  One is too tight--I knew it would be, but the fitter said it was "perfect".  The other has a big, nasty "buckle" where the strap connects to the bra.  It hits my still-tender upper chest at exactly the wrong place.

Good thing I can lounge around most days with nothing under my shirt!  Just don't Skype me and expect to see anything elaborate.

Hugs to all...

otter