PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

Friday, March 23, 2012

Glitz, Glamour, and Giuliana's Mastectomy

Unless you've been living under a rock recently, I'm sure you've heard about Giuilana Ranic's breast cancer diagnosis and subsequent mastectomy. Let me first say, she is a beautiful woman and I'm so sorry she had to go through that diagnosis. I wish her nothing but the best from here on out. I'm so glad I was never in her shoes, and I never had to go through getting that scary BC diagnosis thrown around.

I finally opened my issue of Glamour today and saw that there was a story titled "Diary of a Mastectomy" by Bill and Giuiliana Rancic. Hmm...this should be interesting. You can read the story here :

Diary of a Mastectomy

All in all, I thought it was a good story. Kudos to her, and she gets mad props for putting her journey out there. Except...it really wasn't. I had some issues with several parts of the story. For instance, it never said WHAT type of reconstruction she had. Did she had one-step direct to implants? lat flap? DIEP? tissue expanders to impants? SGAP? She says in the story that she went back to work 2 weeks later, schmoozing it up with Ryan Seacrest and giving interviews to George Clooney. Two weeks after MY mastectomy I wouldn't have gone with 100 miles of Clooney. No way.

I did like how she admitted that she wasn't all that educated about mastectomies and breast cancer and learned that it's not as super scary and wasn't the death sentence that she thought. I like that she talks about how she flip flopped about the decision. I also like how supportive her husband was in going through it with her. I think it was great that she was honest about how she felt when she woke up, and how apprenhensive she was about getting out of bed.  And I liked that she put a picture of herself right after surgery.

However, I felt that some of it was played up a bit. Like when she refers to her drains as "a feeling like there are knives stabbing you from the inside. They hurt so bad." Well...they really don't. Yeah they SUCK. Literally and figuratively. And it's awakard trying to move around with them, and sometimes they can start to tug and pull when they get caught on something. But knives stabbing you from the inside?

One part of the article I really had a problem with was when she mentioned reading a lot of blogs (could she have stumbled upon this one? :) ) but then said that Bill stopped her. He jumped in to say that the internet was "full of women who were giving medical advice who had no right to be."

Well! Mr. Rancic THAT was NEVER my intention! But let me put forth a disclaimer right now- This blog is no way medical advice. I'm merely putting out my story in hopes that it will help someone else. So, yes I did get a teensy bit offended by that comment.

Like I said, all in all I think she did a good thing by putting her story out there. But I think it may have been a tad more realistic.

The moral of the story is that no two journeys are alike. Some people may glide through the process like Giuliana. Others may stumble along, and end up crawling when they get to the end of the road. But, the main thing to remember is that you will get through it.

Saturday, March 10, 2012

Good Report and Rub On Fipples

Well I went to the PS this past week for my post-antibiotic follow up. She looked me over and pronounced me good to go! She didn't think I should have any more infection problems and then she started pointing out what she could revise whenever I was ready to get a touch up. (PS's are so picky about their work LOL). She said that she wouldn't do anything else, nipples or a touch up for a year. She said to just give everything time to settle down and then we could do the revision/nipples if I wanted them. Since I do want nipples and I'm all for having the best foobs possible I agreed to wait. Again, I say, what was I going to do if I wasn't willing to wait? Throw my gown at her? Take her by the hand and march her to the procedure room and demand nipples? (That vision actually made me giggle a little)

A sweet FORCE member sent me a ton of the rub on nipples for "post mastectomy fun" (that's what the packaging says). I'd shoved them in a drawer and forgotten about them. Today, I saw them again and decided to try them out.

They are exactly like the rub on tattoos you'd get as a kid from the quarter machine (Can you imagine if some poor kid got tattoo nipples out of those??). So I peeled off the plastic making, put them on and rubbed them down with water. After thirty seconds I peeled back the paper..... and in my best Joey Lawrence Blossom Era impression I said "WHOA"

**Sidenote- Two things 1- Am I dating myself or what? and 2- Has Joey Lawrence DONE anything since Blossom??***
They looked so FOREIGN! I haven't had nipples for almost a year, but here they were! I will say, these tattoos are very realistic and seeing them made me want them. At that point, I felt something. Something I haven't really felt in almost a year.

I felt complete.

If there were any doubts whether I'd want nipples or not, this erased them. I finally saw my foobs as part of me, not some foreign breast mound thing. I couldn't quit staring at them! Until I realized how strange it was to be staring at yourself , topless, in the mirror.

For anyone who's interested, I'd strongly recommend looking into these. You can get all shades and they are not to expensive. Here's the website (I typed it all out because frankly, I find it a little funny :) )

http://www.rubonnipples.com/

And yes, I tested the link first. God forbid I should send my readers to some exotic sex toy website.

Now I'm just sitting here thinking...a whole year?? I've been so consumed with boobs and foobs that it'll almost seem weird to let go and wait! I'm almost at the end of my mastectomy journey....a little strange and almost sad. But, now I'm about to start my new, drastically reduced risk, journey. I finally get to meet the me that's on the other side :)

Yes, that was slightly corny. But again, it's my blog and I"ll do what I want to.

Good night!

Tuesday, March 6, 2012

Women's Healthcare and Politics

My usual stance on politics is to not have one. I'm like the France of political opinions. I stay completely neutral, shy away from discussions, and quietly vote on election day, never telling anyone who I vote for. I'm a registered republican, but I'm here to tell you that I don't always agree with them. Sometimes I agree with Democrats, sometimes they both repulse me. Right now, I don't know WHAT I am (no jokes please).

Women's healthcare has become a big issue to me. I wouldn't have been able to even consider having a PBM had women's healthcare and healthcare in general not made the strides that it has. Now, there is the issue of healthcare reform, "Obamacare" if you will but that's a different story, for a different blog (that I'll probably never write). There have been twice in recent memory that women's healthcare has taken a big hit. At, oddly enough, both of them seem at odds with the Catholic doctrine. Although I am Catholic, love my faith, but I also have my own working brain thank you.

There was the thing with Planned Parenthood/Susan G Komen. One woman (Karen Handel I believe) got herself in a nice position at SGK. She was known politically for being very anti-abortion, however she had been under fire for not being anti-abortion enough. Well, she was about to change that. She wrote new policy for SGK which mandated that funding be pulled for SGK. Since SGK had been a huge funds source for PP's women's healthcare sector, the sector that offers free breast exams and mammogram referrals this caused quite a stir. Now we all know that PP also offers abortions. If you talk to the right person they'll compare them to an "abortion mill" but in reality they only perform 3% abortions of all  their services offered. So this Ms. Handel was going to pull this funding in order to prove a point. That she was defunding what she coined an abortion mill. Never mind, the large percentage of women who would suffer because they could not afford to get screenings anywhere else. Needless to say, all craziness ensued and eventually Ms Handel stepped down and SGK gave PP back their money.

Now, the tide has shifted to birth control. The main issue was because the government wanted to mandate that ALL employers, including Catholics are required to let their insurance they offer to employees cover birth control. Now this is not asking the employer themselves to pay, or the tax payers. This is simply writing into the insurance policy that birth control will be covered on the PRIVATE insurance that these people pay for, that is in no way subsidized by the government. Now, since I'm a supporter of the separation of church and state, I did take issue with this. However, this mandate of the separation of church and state is written into the Constitution and it was one of the fundamental tenets our country was founded on, so I didn't ever think that this would pass, However, I knew that since this was a now "hot button topic" and we're smack in the middle of an election year that this would cause quite the spectacle. And boy has it.

A Georgetown law student spoke at a congressional sub-committee hearing on why she thinks that the school's insurance should offer birth control coverage. She did say things I didn't agree with (like $3000 for four years for birth control) but she didn't go in front of this sub-committee and talk about sex and why she and other co-eds want to be able to prevent pregnancy and be promiscuous. Instead, she spoke of different reasons why people should be on birth control and what could happen if they weren't. I, for one, have been on prescribed birth control for years. Not because I wanted to be free to sleep with whomever I wanted to without having consequence, but because I prefer not to menstruate at irregular times throughout the month and be laid up in bed with debilitating cramps and pain half the month. WHAT? A Catholic on BIRTH CONTROL? I'm not shy about being on birth control and have yet to find someone who condemns me for being on birth control. So that part of her speech I could identify and sympathize with. I'm also knowledgeable enough about anatomy and science that I understand what could happen with someone who NEEDS birth control and it's with held from them. I also recognized that Ms. Fluke was simply exercising her constitutional right to speak, and whether I agreed with what she said or not did not change the fact that I respected her for stating her opinion in such a way.

Apparently not everyone felt that way.

It came out that on his radio show, Rush Limbaugh went on a vicious personal attack on Ms. Fluke. Even more than usual, his radio show was filled with such vitriol that I was taken aback. His most famous quote is:

"She (Fluke) wants to be paid to have sex. So what does that make her? A slut! It makes her a slut, a prostitute."

This very statement alone (and yes that was a loose quote, but the general idea is there) is enough to make me go "WHAT??" I watched her speech and the word sex was never mentioned. Why, in the world did he make THAT jump?

But he didn't stop  there. I won't rehash his whole radio show but these are the highlights (again paraphrased):

"If you want the taxpayers to pay for your birth control, then we went something in return. We want you to post videos online of you having sex, so we can watch" (Um, ew??_

"She's having so much sex, I'm amazed she can walk"

"Did you ever think about maybe not having so much sex that you need so much birth control that it's causing you financial hardship?"

At this point, I would like to point out the absurdity of this particular statement. You don't take more birth control the more sex you have. It's the same amount- to quote Stephen Colbert they don't "act like little baby deflectors"

"She's an immoral, baseless woman with no purpose in life"

And there were SO much more. 46 to be exact. Then, in the days that followed, he apologized "FOR THOSE TWO WORDS" (Slut and prostitute) and kept reiterating "FOR THOSE TWO WORDS" Again to quote Stephen Colbert "He fully stands behind what else he said. He only apologized to keep sponsors. Which just goes to prove, Rush Limbaugh will do anything with his mouth for money"

Now, Rush Limbaugh is Rush Limbaugh. I get that. He's a radio host, an entertainer. He's no different from a wrestler who cuts a scathing promo against another wrestler and then goes out with them after the show (think Kevin Nash and Scott Hall). What killed me is the people who sided with him. "She is what she is" "Rush called it like he saw it" Religious, birth control, issues aside, in no way is it ok to viciously attack someone like that. For any reason. And I'm pretty appalled at the people standing behind him. I'm fine with people liking Rush and listening to him frequently. I mean, the man gives me a headache, but to each his own.

I would like to repeat that in MY world, it is against my religious, moral, and ethical values to personally attack someone for speaking their piece. She didn't do so forcibly or with disregard to other people's rights and freedoms. And in no way, was sex ever mentioned....until Rush.

I, in fact, admire Sandra Fluke. She took her concerns to the source, to the people who could change what she wanted change. That's how I feel it should be done. This government is set up to hear what the people want. For example, I strongly oppose abortion. However instead of sitting outside Planned Parenthood with signs (to quote John Mayer's Belief- "Is there anyone who, ever remembers, changing their mind for a paint on a sign? Is there anyone who really recalls ever breaking rank for something someone yelled real loud one time? He then goes on to say- "Some need the exhibition, some have to know they tried") people need to VOTE for anti-abortion laws, write their congressman, etc etc. Picketing Planned Parenthood for anti-abortion reasons is like protesting against a bar for selling liquor. They're going to do what they do until it's illegal.

I guess that means I've got something of a brain. And I take birth control.

Guess I'm a slut, eh Rush?

Friday, March 2, 2012

Previvors

PREVIVOR: A person who is not diagnosed with cancer, but has survived the predisposition, or higher risk, of cancer due to a genetic mutation and/or strong family history. After being armed with this information, a previvor can make informed choices prior to a cancer diagnosis.

There it is. That word that has become a part of my very being. The word that describes me so completely, yet it wasn't in my vocabulary a few years ago.

PREVIVOR.

When I first started this crazy, mixed up journey I had gone onto another message board. I won't say the name of it, because it is a very good message board, for the right person. It's more geared towards breast cancer survivors, so needless to say me and my questions about having a PBM were not readily welcome. I had posted a few times and had a warm reception when I was going through testing and biopsies and not knowing the results. However, when it became clear that I was not gettng the dreaded diagnosis, and was leaning towards a PBM I began to get a little bit more negative feedback. At one point I did pose the question as to whether people acknowledged there was a group of people in my situation. Not having breast cancer, but dealing with it nonetheless. I felt like my struggle and sarifice needed to be acknowledged! At which point I got a reply that in no uncertain terms told me I had no right to consider myself in the same boat with breast cancer survivors. The poster also pointed out that I'd perhaps be a better fit at the FORCE message board and then told me "I believe you people are labeled previvors" Someone else recommended the book Previvors (which I'm very thankful that I got!). Needless to say it was my last post on the particular message board.

Since my surgery, people who only casually know me or hear of my situation fall into one of two categories:

1- Oh you had a mastectomy? How long has it been since you've finished chemo? (I tell them I haven't had chemo. Then still not getting it they say---) Well did they catch the cancer in time?? (finally I tell them I didn't have breast cancer, which is why I didn't have chemo) **complete silence** Well good for you! (And then they promptly leave)

OR (and the majority of people)

2- So you had a mastectomy? Did you have breast cancer? No...well were you at higher risk?? Good for you! That's such an amazing decision and I know I'd do the same thing.

Most...really most.. people are very supportive of my decision. Whether or not they'd do it themselves (I've had people tell me there's no way they'd do it themselves) they are very supportive and respectful of my decision.

Even so, I am not a breast cancer survivor. I repeat- I AM NOT A BREAST CANCER SURVIVOR. I do not want people to think I'm one. I don't deserve that title and I have nothing but awe and respect for the breast cancer survivors out there. However, I feel like that my struggle, my sacrifice, my journey DESERVES to be recognized. I may not be a breast cancer survivor, but damn it I've been affected by breast cancer just the same. For life. I sacrificed my breasts to save my life. I've been to hell and back through this whole journey and the real kick in the behind is that I've done it all before I was sick. I was 100% healthy, walked into the hospital and let part of my body be cut off. And anyone who thinks that was easy, or thinks that I did this just to get better boobs (well let's face it that is the silver lining.....) is crazy, stupid, ignorant, or a combination of all of them.

Also, I make jokes. I do. In fact, I don't know a person who has been through a PBM who doesn't. Go through something like this and you get a few privileges...making jokes is one of them.

I'm not stupid, I know there will always be people who disagree with my decision for one reason or another. To them I say...I sincerely hope you never have to be in my shoes and make my decisions. And to cancer survivors I say, I sincerely respect and am in awe of the struggles you've been through. Cancer, of any kind, is a terrible disease and I pray that I see the day that it is eradicated.

I was catching up on blogs tonight and I saw that someone posted about HBOC Week and National Previvor Day. This is the last week of September, before Breast Cancer Awareness kicks off in October. Hmm... previvor BEFORE survivor. Interesting.... pun was intended don't you think? ;)