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? ;)

Work in Progress

Once again I feel like time is moving so slowly. This anticipating and waiting for something to happen SUCKS. Every day when I hear my cell phone, I cringe thinking it's my PS's office telling me that the surgery will have to be put off.

I feel like I'm stuck in limbo. Like I'm incomplete. And I swear my self-esteem has bottomed out. I don't think I've ever felt this bad about myself. No boobs + extra weight from being a lazy slob for a few months does not equal a positive self image. I feel like it's hurting me in a lot of ways, like in my relationship with Mike. I just almost wouldn't blame him if he moved on to someone else, complete with real boobs and nipples and a little less weight.  I mean, I know he loves me and I don't think that would happen (?)...see there I go doubting myself again. I need to be just locked in a room until my exchange.

The scary thing is, I don't even know if this feeling will go away when I have my exchange. What if I'm like this forever? Should I just send Mike on his way and join a convent? I mean I AM Catholic.

I imagine in a few years, once the scars have faded, the implants have settled, and the phantom pains have ceased I'll feel a lot better. Whenever I start feeling upset, I think about what prompted me to have the surgery in the first place. I've never lost sight of it, but I'm realizing now what I didn't realize then. The impact that it would have on my self esteem. I dodged the breast cancer bullet, but at what cost?

I think I'm suffering post traumatic stress disorder.

I feel almost bad burdening people with how I feel. I've been going on and on about this for over a year now. People I've talked to that are over and done with, in the "all done club" say they never think about their mastectomy. I'm getting there...but whenever I change clothes it's a grim reminder.

I promise to stop complaining, to try to snap myself out of it. God help me, I'm even anxious for school to start. At least then I'll have a whole new set of things to worry about. And I'll try to keep all of the reasons that my PBM was a GOOD idea in my head, and that I'll at least be around for a long, long time, boobs or no boobs.

Before I wrap this slightly depressing blog up, I wanted to direct my reader's attention to another blog. I'm not adding this to my blog roll, because it's not a "fellow previvor" but Rachel's story is inspirational nonetheless. Check her blog out at: http://www.alifecontrolledbydisease.blogspot.com/

And from here on out I promise- nothing but happy blogs :)

Happy New Year!

Famous again!

Just wanted to let everyone know that I am featured on The Fight Like A Girl Club's website. It's like I'm famous! It is pretty cool to see my story where everyone can see it :) Take a look and enjoy!

http://www.thefightlikeagirlclub.com/2011/11/michelles-fight-like-a-girl-story-cowdens-syndrome-breast-cancer-previvor/#comments

Happy Belated Blog-o-versy

Wow...yesterday marks the one year mark since I started this blog. I can't believe it! I was thinking about it on the way home from the gym. Thinking about how I almost didn't want to start the blog, and then was convinced that no one would ever read it. I just checked, and I have 7,972 hits. Pretty good for a small town southern girl ;)

I was also thinking how that in spite of my reservations about letting people see the vulnerable side of me, I'm so glad I've started the blog and kept it. I know of how many people have reached out to me, saying that I've helped them and they felt comforted by my words. I only hope that there are other people who have found some comfort and hope in my journey. Or at least people have realized that they are not crazy, or felt some solace in knowing that they are not alone in their craziness! HA HA

As for me..I'm waiting, waiting, waiting. I have my follow up PS appointment on December 7. Then if I'm given the all clear I'm sure I won't have another appointment until my pre-op. It makes me sad that I'll have to have the expanders that long. I HATE them! I'd take them out myself if I didn't think it could create a whole new mess of problems. It's hard to sleep, my right side hurts sometimes, and it's just all around uncomfortable.

It's weird...everyone treats me as if I'm normal. (surprise, surprise). It's like that no one KNOWS that I don't have boobs anymore. I kind of almost want to shout " I HAD A MASTECTOMY BEFORE I WAS 30 SO I DIDN'T HAVE BREAST CANCER" Ok maybe not that extreme. But I just feel like I have a secret.

It feels so weird that so much has happened this year, but time has flown so fast! I can't believe I'm going grocery shopping for Thanksgiving next week, my birthday is in two weeks, and Christmas is right the corner.

All I know that in this past year, I've lost a few parts, but gained some strength and courage in its place. And this time next year...I'll have two great foobs complete with fipples (hopefully lol)