punks/ radical queers? even 1 other person besides me?

Jessamine,

You are not alone! And I'm certain there will be plenty more besides you and me here.

Chemo allowed me to free my closeted inner punk. Knowing my waist-length hair (great disguise) was going away, I went for the 4" blue mohawk I'd always wanted. It was a thing of beauty that lasted two weeks before falling out. I'd just started a new job  (govt desk drone - I wasn't quite up to continuing as a firefighter during treatment) and even folks who didn't know about the cancer were pretty excited about my hairdo. Surprising, considering I live in a small, conservative, western ranch town. My dad came to visit and saw the hawk and learned about my full-back tattoo, as well. He took it like a champ.

I figure, we can sulk, or we can use cancer as an excuse to have a lot of fun, because who gives a bleep what anyone else thinks? Stay strong, sister!

Hmm, yes, not quite the showing I thought this topic would have. Especially considering it's now about 1 in 7 women getting BC in her lifetime (from 1 in 20, 20 years ago). Perhaps because BC survivors are not an invisible minority anymore, and neither are punks, feminartsy-lesbo-druids,and other formerly marginalized fringe sects, there isn't a sensed need to band together. Plenty of lurkers, though, looking at the number of views we've received.

I finished chemo (T-C-H) in November, refused radiation, doing Herceptin (for the HER2+) through June, and I'm going to refuse Tamoxifen. (Check the "bottle o' Tamoxifen" thread if you're curious why.) I've got one breast and a bunch of scars that I've become fond of. Thinking I'll probably skip reconstruction. Doc says "But someday you may want to wear a low-cut evening gown."  Hey, I've never worn one before, why would I start now? I was self-conscious at first, but now I wear tank tops or whatever and just let people wonder. Uniboob has become part of self expression. Scars are more cool than tattoos - they declare your ability to survive. No Future is one punk motto I don't hold to anymore. I intend to stick around a while.

Since you did bi-mx, are you getting retrofit-tits or are you rocking the monokini at the beach now? How are you feeling? (With apologies for asking that if you're still in the stage of feeling like punching anyone who asks.)

Hello you two,

Well, I've never posted in any of these forums, so this is a bit new to me. I was diagnosed last January, and have gone through my bilateral mastectomy and chemotherapy. I opted for reconstruction, even though i did like the look of my absolutely flat chest. I just got the implants in this January and they're...ok. I like them more as the reconstruction goes along. But you're right, plastic boobs are weird! I'm till not totally stoked on my scars, but i'm getting to appreciate them. Jessamine, how are you able to keep your nipples? Isn't it part of the the breast tissue they need to remove? 

Good on you, both, for figuring out what you need to do to feel "real" again. If I had done bi-mx I would certainly be more inclined to get reconstructed, and sometimes I think that would have been the smarter way to go. I don't have the BC gene though, so the left breast got to stay and play. (My boyfriend now calls me Lefty, or Spike, or Skin, and he treats me exactly the same as or maybe even closer than before surgery, so that has resolved the initial insecurity I felt about being deformed.) Part of why I don't want to let the plastic surgeon try to "fix" anything is that he said they don't make implants small enough to match my AA, so he wants to enlarge the left at the same time. I still have one nipple that works and I'd like to keep it that way. After ten months I'm finally starting to get some sensation back in the scar-zone, and I don't want to go back to being completely numb.

 I had never realized before all this how implicitly women are defined by their breasts. Whether by social pressure (my brothers all thought I should get implants so I could feel "whole" again) or just from our own self-image (I spent a while feeling like I was an IT, not a girl anymore).  I'm incredibly lucky to have a guy who, when asked if I should get new boobs, said "Can you get ones that spin around and change colors?" I'm not saying I would never change my mind, but I'm relieved to defer the decision for the forseeable future.

Jessamine - your post just came up while I was writing this. It's good that you have docs able to do the nifty whizbang stuff! What size is your tumor now that you've had chemo?  Tumor shrinking before surgery seems like the best way to go at this BC business, and I'm not sure now why that wasn't offered to me. Maybe just the aggressiveness of the cancer I had, and the fact it was right behind the nipple. But I know two women here who've had pre-chemo and then lumpectomies, and they're doing fabulous. (My friend who's a yoga instructor put together a Yoga for Bald Chicks class when I got diagnosed. So I know the other four survivors in town.) 

Abrazos y amor, ladies!

hmm, thats pretty cool that you get to keep the nipples. My onc told me that it was all part of the breast tissue that needed to be removed, but maybe that had to do with the location of the tumour (right beside the nipple), the grade and my age? Will you be able to breastfeed? Its awesome that you have such an amazing surgeon and had such a great reaction to the chemo!

 Our society is definitely a bit obsessed with breasts. I remember deciding that i wanted a bilateral mastectomy the day i found out, but the only people who agreed and were 100% supportive of my decision was my boyfriend and my step-dad (my step-dad's mom died from breast cancer when she opted for a lumpectomy over a mastectomy and it came back in with a vengance). My mom was heartbroken that i wouldn't be able to breast feed and  my doctors just kept asking, "are you sure? It seemed like a no-brainer to me given the grade of the cancer and my age.

 Your b/f sounds hilarious-best response ever!. Definitely don't let them mess with your other breast if its unnecessary! When did you get the gene testing done? I'm just getting mine done now and its going to take about a year for the results to come it. 

I'm not exactly sure why it would take so long except that I'm getting it done for free, through our health care system (Canada) and not through private insurance. I can't remember what genes they are testing for.. there was two that started with "B" and one that started with "P". Maybe a bit different than usual due to family history? Its not really a rush to find out anyways since i've done the treatment for the breast cancer-its more to find out regarding my ovaries and regardless of the outcome i wasn't planning to get those removed until my 30s (if it is deemed necessary).

I recovered from surgery pretty quickly (had my drains out in 5 days, was back at the gym in 2 months?), but its taken me a while to get my arm strength back. They lift up your breast muscle to put in the expanders/impants and it had a huge impact on my upper body strenght, especially since you'll start to get your strenght back through physio etc. and then you have to go in for another surgery/take more time off from the gym for recovery. I think the worst part of the recovery was the drains. Oh, i hated them so so much! The first surgery was the worst because I just wore a loose shirt and had the drains safety pinned to it, I was so paranoid that i was going to accidentaly rip them out. For the second surgery (when i got my implants in) the hospital gave me this really snug/strechy ruched tube top with velcro on the sides for easy removal and loops on either side so that i could pin up my drains. Just having everything really tight to my body made me feel way more comfortable and secure, i would really recommend getting something simiar. I also used a ton of really firm pillows to help prop me up because it felt really uncomfortable to be laying flat on my back.  Sleeping was pretty hard for the first couple of days but i did have some herbal help...

J - Thanks for the anti-oophx advice! Hopefully your bod will sort out how to get back to normal and hotflashes won't last too much longer. I was experiencing the same symptoms on chemo and begged for an estring. I filled the rx but was scared to use it, and then my symptoms all started to resolve about 2 months after my last chemo dose, so it's still unopened in the box. I'll send it to you if you want. (If we can figure out how to mail to an anonymous address, or whatever.)  I've heard that coconut oil is good taken as a supplement for dry skin, and I can vouch for its effectiveness as lube (plus it tastes good:)

I'm betting you're already taking extra calcium for bone strength, but have you added extra Vit-D as well? It helps calcium absorption, plus I read a study this week that suggested a big reduction in cancer risk from getting at least 4000 IU  of vit-D per day. Unless we live in the tropics or work in agriculture, it's unlikely we're getting that much without supplements. I'll try to relocate that paper; I think the reduction was 50%, but I may be confusing it with the research on fruit/veggie/exercise regimen.

Did you ladies find that one side effect of chemo was an insomniac compulsion to search out every bit of relevant research posted on-line? I thought I was past that, but now I'm sucked back in, looking for journal articles that justify refusing Tamoxifen and suggest alternatives to it.

To reply to the person that was making fun of people with breast cancer: I many times in my life have had to eat my words, hate it for you! I am above arguing with ignorance, it is a lost cause. As for the many brave ladies that have battled or are battling BC, I am a better person for coming through this battle not once, but twice. I am a stronger person, and BC does not define me and it will not destroy me, nor will the words of ignorance. Stay strong girls!  And take advantage of the free boob job, the first time I went bigger, but it was hard to find bras and clothes, so this time I went smaller, and yes, I am planning on rocking the monokini!!!!!

Hi!  Just wanted to chime in.  DH and I used to be a little punk in our younger days - since the kids came along, we don't get out enough to be much of anything LOL!  It does my heart good to hear of the blue hawk, though!  When I thought I was going to have to do chemo, I had a few ideas for my "transition" and wigs ... I have to admit I was all too happy to give up those dreams though.

Hopefully you are feeling a little better since your last post jessamine.  The first week or so was definitely the worst - especially since you had the expanders put in, too.  I had my bilateral first, then expanders later (due to the chemo/radiation debate prior to sx), and I have to say the expanders and drains were by far the worst physically. I'm happy to report that a week out from exchange, it's much more comfortable!  I wasn't able to keep my nips as the cancer was too close, but am planning to get a normal tatoo on the cancer side (not nips) and rock the "Barbie look" on the prophy side - after all, who am I trying to kid really?

Hey, J, attakid!! Makes me happy to know you're sailing right on through! I needed some good news, and you're exactly that!  Abrazos y amor, hermanita!