Nov 18
Oprah
A few of my online friends are working on an Oprah proposal. Here is my letter to the Harpo people.
I was just 27 years old when I made the decision to remove my ovaries and uterus and throw myself into menopause in my 20’s. Just last year, I removed my healthy breasts at 32 to avoid breast cancer. As a young woman, most people would see this as either extreme or courageous. For me, it was neither. I am BRCA positive and it was what I needed to do to keep myself here for my daughter as long as I could. My groups of friends that are also BRCA positive that I have met through the internet have given me strength and advice and been a mother figure to me every step of the way. Losing my mom to breast cancer when I was only 24 has impacted these decisions but has not made them easy. But my mom left me one final gift, the knowledge and ability to change my fate from hers, the foresight to protect myself and take that hard road of surgery without being sick.
In making my decision to remove my healthy breasts, I also took a radical approach to dealing with the stress and took my story public. I was featured in the local newspaper multiple times and was shocked after surgery to see that my picture covered the front page. The first of a series of articles can be found here. http://www.wenatcheeworld.com/news/2008/oct/25/the-decision-of-her-lifetime/ I discovered support from not only my friends and family, but my community as a whole. Women would say to me, I felt, if you can have a mastectomy, I can do a little mammogram. It was an amazing journey and one that I would love to continue to share with your viewers.
I received a note from two of these online friends regarding a request to your show for a BRCA story. I feel this would raise awareness and be an excellent source of information for people that could be high risk. The current changes to the Mammogram guidelines makes this story also a topical subject. Please consider having a show on the subject and feel free to contact me for any additional information.
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Nov 12
What do you do when you have bra frustrations?
Well you start a website that sells them of course! So with all of those posts on bras, I thought, maybe there needs to be a solution. I created a website, releasing it officially today called www.hotpinkbras.com.
Check it out, spread the word. What would also help, if you’ve tried one of the bras on the site, write a review for it. Good or bad, every bra fits every person differently. The more information on them the better. Check back, I’ll give more information and definitely be keeping this more updated now that it is released.
I’ve been working hard the past few weeks getting design done, the logo from my talented cousin and the inventory all entered in. All those colors and sizes. I’d of course have to pick the one article of clothing that is the most difficult. Think about it, what has more sizes? Okay, maybe men’s pants. But this was no picnic. I loved it though and am so glad it’s done. Now I’ll be adding content. Writing some personal story stuff and try to get this integrated into the site. It’s very exciting though and I can’t wait to see what happens in the coming months.
3 commentsOct 5
Clinical Trials
I received an email about a clinical trial this week that I thought sounded interesting and thought I would share. Here is a portion of what was sent to me. I hope by passing this information along, I can increase awareness of other types of Breast Cancer. I know too well that all breast cancers aren’t the same and this is one I hadn’t heard of until now.
Celsion Corporation launched a program this week to increase awareness of a clinical trial for Recurrent Chest Wall (RCW) Breast Cancer, a condition that affects up to 40% of women who undergo a mastectomy. The prognosis for these patients is poor, with most going on to develop metastatic disease, and there are limited treatment options available. The pivotal Phase I/II DIGNITY clinical trial is evaluating the use of ThermoDox® in combination with hyperthermia for the treatment of RCW Breast Cancer. In early studies, conducted at Duke University Medical Center, investigators report that ThermoDox® has demonstrated significant promise in treating this highly aggressive disease.
The DIGNITY study is being conducted at 7 sites across the country, including: Rhode Island Hospital, Providence, RI; Florida Cancer Institute, Hudson, FL; New York University Hospital, New York, NY; Saint Barnabas Medical Center, Livingston, NJ; Duke University Health System, Durham, NC; Virginia Commonwealth University – Medical Center, Richmond, VA; and Cancer Treatment Center of America, Tulsa, OK.
More information about the DIGNITY trial can be found at:
http://www2.prnewswire.com/mnr/celsion/39944/
In addition to the link above, they can also go to www.celsion.com and www.clinicaltrials.gov for more information.
1 commentSep 28
Pains and other things
I reached up today and put a box well above my head. I had to stretch over some things and it was just too much. It’s that right side again where the sentinel node came out. That area is still so puffy, it drives me crazy. It is actually pretty tender if you push on it and really frustrating. I wonder if it will be like that forever. Ugh.
I went to the surgeon in Wenatchee last week who I absolutely love. She is just wonderful, down to earth and funny. She checked out those left lumps (that are getting worse as time goes on) and thinks that they are the implant sitting on top of my ribs. I’m going to have another follow up super ultrasound to confirm, you still don’t want to take any chances with lumps in my breasts.
What was really interesting though was that I have a centimeter of tissue in most places (not breast tissue, just skin and well, I’m not sure what.) She said it was extremely consistent except for that one lumpy area where it looks slightly thinner. I’m not sure how much tissue was between the implant and the outside world but a centimeter is SO small. Pretty crazy in the medical world these days. It amazes me still what I did, what those doctors did. It’s incredible.
The good news on those lumps is that when I go back for the nipple to NY, they might be able to do something to even it out and make them less noticeable. They probably aren’t that bad but to me they seem SO large. I just don’t want to look weird or deformed and lately, that’s what I feel like. Sometimes, I’ll be fair. Most the times I feel really good about them and have never regretted what I did for an instant. I actually feel better about them than I did with my old ones. I feel extremely lucky to be low risk and have the results I do.
2 commentsAug 18
Giving up on Bra’s
I have officially given up on bra’s. They don’t fit right, they look funny. Just wrong. BUT today I went down to Macy’s and tried some on and found two that are perfect. So how am I giving up? The need to have a regular bra. The need to find something pretty, lacy, silky, flowery, etc. etc. I have found just the simple thin fabric may not be as sexy but feel SO good. They are the most amazing thing ever. So comfortable. I have to just get past that need. I’ll channel it into panties or more bikini’s. I think that bra’s make a woman feel sexy. Something close to the skin, no one has to see it but just that little bit of pretty. Something lacy that only you know about. For some reason, I can’t let that go. But tonight, it doesn’t matter anymore. Most women would kill to not have to wear bra’s. I need to embrace the good, let go of the past.
I love that I can wear these thin little bras. That I don’t need anything pushed up, no wires, no padding. Just a thin light soft fabric. I have been wearing this one for about an hour now and can’t imagine taking it off. It is SO comfy. So for my BRCA sisters, here’s the bra’s:
Walcoal Style 87042: Link to Nordstrom’s Bra
Barely There Style 4285: Link to Amazon’s Bra This is my favorite because it has a clasp and a little bit of design but the Walcoal is the one I am wearing right now and it is SO comfy too.
So good bye to bra posts. I am sticking with these from here on out and will be seriously staying away from the lingerie department in the near future, it just depresses me. Cute panties in my future . . .
1 comment
Aug 3
Feelings, nothing more than feelings
So I can’t express how weird it is to not have feeling. I had a little spot on my shirt today and tried to get it off with a Tide Pen. It is so weird to push on a body part, see it go in and feel NOTHING. It is SO weird. Out of body weird. Under my right arm (the lymph node surgery site) I feel more numb like a lip after dental surgery times 100. But the breast parts feels like you are pushing on a pillow sitting on your chest. It is weird.
3 commentsJul 29
Check out my new friend
http://goodbyetoboobs.blogspot.com/
From the URL can you guess what is it about? 
I found her on twitter and SO glad to have another connection.
Jul 29
On my mind
Bra update: I did get new ones in the mail. I wouldn’t call them fitting perfectly . . . There is some gaping issues where nipples should be. Implants aren’t exactly the same shape as the real deal.
More pressing is the past couple days have been heavy on me. It seems like everything is reminding me. I think after a few months of getting back to normal, it’s time to get back to it mattering. I have had two nights in a row where I dreamed my mom was alive. Then a few things have come into my email box about FORCE and then a tweet on Jessica Queller (Pretty is What Changes) from a Live Strong campaign on You Tube. It just seems heavy on my mind. I’m not sure why, or where to go with it. Seems like an odd time to be. But I’m definitely going to pay attention to it. It feels like someone is trying to tell me to get more involved. Not sure how yet, but I’m not going to forget the fight.
I’ve also just the past 24 hours been mourning my old breasts. I saw a picture with them and I just miss that softness, that realness. The pool lounging has been especially hard because they are so obviously fake. I feel like people are looking, talking about me. Thinking I’m the kind of woman that gets fake breasts. I just want to announce to the world, I HAD A DOUBLE MASTECTOMY, GIVE ME A BREAK AND BE NICE TO ME. Yeah, that probably won’t happen. Sigh. I just wish people saw inner beauty as they so quickly see outer.
2 commentsJul 13
Bra update
So I had to take back all my beautiful new bras. They pushed into the implants in the middle where the under-wire is and can create a dent. I knew that, don’t ask me why I didn’t think of it. I ordered some of the Barely There from Bare Necessities. Hopefully I will get them this week and see how they go.
On another note, I am getting weird swelling under my arms sometimes. Maybe I just notice it sometimes more than others but it is still pretty puffy and numb. I wonder if this will ever go away.
2 commentsJul 2
Hello new beautiful bras
I went and plunked down $100 at the VS sale. I got 4-5 (lost count) and they are all SO pretty. They look so BIG, yikes. But I love them. I ended up getting some with lace, just couldn’t resist, so we’ll see how that goes. I am wearing the first one now, seemed like it would be the most comfortable and so far so good. But it feels like it looks funny to me. Oh great, now they are twitching. Well hopefully they will settle in and I’ll get used to the feel of them.
I can’t express how big of a deal a bra can be. I was hoping I wouldn’t need them by now but with the whole one nipple thing, it is a bit better. Now even as I am typing this, it feels weird. Not right. Hmmm. They just don’t fit the same as natural breasts. Maybe I need to get some t-shirt bra’s next. These cup formed ones just feel funny. I’m not giving them up on them yet. Maybe I am just self conscience and hyper sensitive. I mean, they weren’t perfect before right?
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