What I’ve learned being a Previvor. Happy Two Months :)

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Happy two month birthday to my dear Rocks (expanders)!!!!

Today marks exactly two months since my prophylactic double mastectomy and I’ve learned a heck of a lot. I educated myself prior to the surgery and sort of knew what to expect based on other’s stories. But, I quickly learned that my recovery was/is so different from someone else’s, everyone heals at their own pace, and it wouldn’t be helpful giving a day-to-day update. I think you would be bored with my “Dear Diary” blogs…I can’t offer anyone a play-by-play as to what to truly expect after surgery, nor do I want to bore you with the details of every day life. I can give you a list of suggestions of things leading up to surgery (blog for another day), but can’t say for sure how things will turn out. I’ve tried to update on the big events – like jogging a quarter mile successfully, being able to open a store’s door without pushing the handicap button, etc etc. Accomplishing the simple things has given me way more excitement than the normal things…like today for example…I swam over a half mile and even swam 600 yards continuously without fins and I didn’t drown…

Anyway, here’s a few things I’ve learned the last few months…

1) Cancer in general and being a BRCA1 carrier scares people. People don’t know how to respond or what to say when I told them about Sarah’s cancer, my own genetic testing results and how I was doing the preventative surgery. I got blank stares from people with eyes rolling back. I had people say some pretty ignorant things like, “free boob job” or “change your diet and exercise more and you can avoid the BRCA gene turning into cancer.” Ummm, okay! I don’t view it as negative anymore; I view it as quite comical. People get uncomfortable and say things they shouldn’t have. People are just plain stupid.

I was really hurt and upset when people walked out of my life because of it. It was annoying. People don’t understand or know how to give sympathy (not that I was looking for any anyway). I’m looking at those that walked away as not knowing how to respond or simply ignorant. I’ve learned that it’s not because they don’t care – it simply means they don’t know how to respond, are clueless, or scared. I’ve learned their reactions isn’t in response to me or about me, it’s about them personally.

I’ve learned who my real friends are – they haven’t gone anywhere – they fought and went through this with me.

2) I’ve learned it is okay to have emotional outbursts and it’s a form of coping with things. Everyone’s journey is their own. At this stage in my life, most of my friends are seriously dating someone, engaged, married or pregnant. I’ve been told that a guy will come along and love me regardless of having my boobs or not. Yes, that may be true; however, it doesn’t mean that I still won’t have those thoughts and questions of “How will I date after this?”…”Will I be able to date after this?”…”Will a guy love me?”…”How do you tell a guy about this? When do I disclose it to him?”…too late… he can find my blog and it’s all out there anyway! Haha! I don’t have those answers and will cross that bridge when I get there!!

I’ve learned feelings and emotions aren’t facts and aren’t forever. They subside, rise, peak, etc. Some feelings take longer to process and cycle through. Doing this major of a surgery has me going through all kinds of emotions and feelings. I wouldn’t wish this upon anyone. I’ve learned I need to feel what I feel and trust myself that I’ll be able to breathe and grow from it.

I’ve said this before, I don’t cry often…but this surgery has done something to those tear ducts. I’ve cried for no apparent reasons. I cried when the pain couldn’t be controlled – morphine, Percocets, Dilaudid…and NOTHING’S working!?! It’s an emotional journey and it’s okay to let it out. I’ve learned to cope with the old and now new things that have come with the territory of such an extensive surgery. I’ve learned to not be so hard on myself and to truly show this side of me to others. As much as I hate being vulnerable, I’ve learned it’s truly okay to be vulnerable and let those walls down. You have to process anything major in life otherwise it can fester and turn into anger or bitterness.

3) Live life to the fullest, take chances and don’t take things for granted. I have a very hard time asking for help. I learned I HAD to let people help me because they wanted to be a blessing to me. I learned that I can’t rob people of wanting to help me out and give back. People cooked me dinners, came over to hang out with me when I was loopy and half asleep, drove me to doctor’s appointments, helped me clean my house, did my laundry, etc etc. The simple things like opening the refrigerator door and doing laundry were such huge, exhausting tasks. Making the bed was a cluster so I gave up and stopped making it. Washing my hair was annoying – I had to lean over the kitchen sink, have my mom or sister delicately massage my scalp and hair with shampoo/conditioner, be patient with me when I needed a break because of the pain. It was exhausting! I remember there was one day I just wanted to take a bath and was sick of the sponge baths. I was so excited to fill the bath tub up with a little hot water and bubbles. I took one of my race belts, attached the drains to it with pins, and then attached the race belt to the toilet thingy so I could relax. It was quite humorous when it was all said and done. Getting out of the tub was a cluster and I’m surprised I didn’t bust my junk! I couldn’t push up with my arms and I had to do a Turkish get-up to maneuver myself out of the tub. I made myself laugh. I learned I can’t take anything for granted.

4) Laughter is the best medicine. Throughout this whole journey, I’ve learned that just because I’ve lost my boobs doesn’t mean I’ve lost my sense of humor. Two weeks after surgery, I was walking around my parent’s house with just my surgical bra and drain tank top on. My youngest brother walked into the house, laughed and said, “Welcome to junior high. How do you like it?” I didn’t know what to say but laugh. It was hilarious. I honestly looked like a kid starting puberty. After I got the drains out I was finally allowed to wear sport bras. I had to get certain ones and so off to the store I went.

Me: Hey Mom, I kinda like these sports bras because they come down all the way and don’t hit my drain incisions.
Mom: Oh. Did you get them in the kids department?
Me: (Speechless and laughing so hard I almost peed myself)
Mom: Well, Hannah, at least you’re a good sport. See what I just did there? Sport…bra…

(Both of us dying uncontrollably from laughter)

Oh, and these were only a few of the funny moments…

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5) The absolutely worst part of the surgery is the fear and anxiety leading up to it. I can’t even put into words how scared I was prior to surgery. The anxiety that comes with such a high-risk of knowing I would get cancer someday is completely indescribable and can’t even be put into words. Each doctor appointment prior to surgery left me numb. I stressed about a lot of things and had to learn to chill and let go even more of the things I couldn’t control. Life isn’t always “good.” It’s okay to stress, have some fears, but it’s not okay to let them dictate your life.

6) You get used to your new norm – the norm of having lopsided “boobs”, scabs, scars, and less upper body strength. Is the new norm ideal? No! You will be a delicate person after. My new norm is NOT wearing a bra and I LOVE it…(be jealous!). The first time I saw I myself was a few hours after surgery. I wasn’t fully awake or with it and I thought, “hmm, not bad. I look like I’m 12 all over again.” Fell asleep and didn’t have a chance to really think about it. Well, when I truly saw them and the scars, drains, and black nipples, I freaked a little bit. While in the hospital I didn’t recall having black nipples! Well, they scabbed over (which was expected). It’s the norm for some. The new norm is to not have any sensation or feeling in the chest area. My sister thinks it’s the funniest thing to come up to me and pretend poke me, like the kid pointing the finger saying, “I’m not touching you.” Well, there’s times she “pokes” and I can’t feel anything. They say I may get a little sensation back, but I don’t think about that. Less stress. If it happens, it happens. After surgery, the new norm was having issues in my right armpit and hearing it potentially could be permanent. I have learned to deal with the pain and not make it an issue.

7) Be proactive rather than reactive. Being in the BRCA club isn’t a club I’d recommend for anyone. In fact, I wish I didn’t even have to be a lifetime member. I’m so thankful my sister, Liz, is negative for the gene. If you’re a member or become one, please fight for your health. Listen to your intuition. Trust your gut. Don’t let the negativity of people and opinions affect you. Take control and be your own voice with doctors and fight for yourself with insurance companies.

I had to have my doctor’s/surgeons send numerous letters to my insurance to get the surgery covered. I got the approval and then would later receive a denial letter in the mail. I’d have to fight on a weekly basis.

You’re your own voice. Get routine mammograms, MRI’s, transvaginal ultrasounds and the CA-125 blood work done twice a year. Do self-exams monthly. If you notice anything unusual, please get it checked out right away! Don’t wait. You’re your own advocate.

8) Doing this surgery has given me a platform to talk and be passionate about something that means a lot to me. At first I was very hesitant to share my story. When I finally shared it, I received mixed reviews and that bothered me at first. Well, to those that gave me crap I said, “Screw it. I don’t need you in my life anyway” and so I let them go. When random people would look at me funny for asking for help opening a door, I simply would say surgery! They would follow it up with “what kind of surgery.” I didn’t know how to respond so I ignored their question. The running joke with a few friends was surgery through my armpits…now I just bluntly tell people about it and total stranger’s responses are so supportive and kind. I am so thankful I started blogging and sharing my story. It’s so rewarding when people shoot me emails of how the blog and story has helped them or give them a perspective on something they didn’t even know about. Awareness. I find writing and sharing my story has opened the door to healing. Honestly, it’s an honor sharing my story!

9) You will be changed – for better or worse. I have a new respect and appreciation for my body. I have learned more about myself in the last few months than ever before. My life has forever been changed and so has my body. Knowing the what-if’s and odds being against me really opened up my eyes to what I have around me and appreciating the small things in life. Letting go has been the theme of my life since 2012. Letting go of things I cannot control, circumstances that have happened to me in the past, people that no longer add to my life, etc etc. A mastectomy only removed my breasts; it doesn’t change my inner being. There are two options coming out of something like this: 1) Changing for the better, letting the situation have a positive outcome, and using it to educate others and 2) Allowing the situation to take control and becoming angry and bitter. I feel I’ve come out of this situation completely changed and for the better. I’m a better person now and have used this as a platform to help others.

I’ve learned much about myself through this journey. I’m a fighter! I’m strong. I’ve vowed to live my life differently and without regrets. I’ve learned to embrace the present moments and never let go of the good. I’ve found a deeper meaning to life and how I can help others. I’ve learned a long time ago that everything happens for a reason – whether I know now, down the road or never know why.

I may be physically altered on the outside and have scars, but deep down I’m the same person if not a better person with a better outlook and view on life. I’m learning to accept my scars, not have shame in them, and love my body. I thought I would wake up fearful of what I’d look like and life after would be different. Yes, it has to some extent. Prior to surgery I fell into a trap that everything after would be better, like the fairy would bring out the wand and pixie dust and fix everything. I still look like my normal self and have had some changes that only I know and can see. But to the outside person looking in, I have boobs and the same physical appearance. I didn’t get magically taller…or lose the inner tube called love handles…or lose my thunder thighs…This surgery doesn’t define me and it’s not like I’m wearing a scarlet letter on my chest. Don’t get me wrong, it’s a life-changing event and I don’t want to diminish that; but I came out of surgery as the same, if not, an even better Hannah.

10) Cancer sucks, and that is something we all know. Is life fair? No, but He never gives us more than we can handle. I’m thankful I was on the front end of this and not where my sister is right now. I wish everyone could be on the front end and take preventative measures. If it wasn’t for my sister getting cancer and testing BRCA positive, I wouldn’t have been in such a rush to get the testing done. I would have been passive and waited. It’s a big deal to get tested and know. You don’t want to hear the words you personally have cancer or someone very close to you. I wish my sister didn’t have to go through what she did. If anything, I wish I could have taken it all upon myself and gone through it for her.

A friend’s mom recently passed away from her 3 year fight against breast cancer. When I heard the news I cried. I wish there was something I could do to take the pain away from her and her family. I can’t. Another’s friend’s daughter is fighting for her life and hoping they can hear the words, “She’s in remission.” Another friend’s cousin passed away a year ago from cancer. One of my best friend’s cousin’s passed away three months ago. Another amazing friend, Nikki, lost her daughter to cancer 5 years ago. Cancer sucks.

I hate cancer and what it does to individuals and families. I hate seeing my friend’s in pain. I just wish I could take it all away.

There’s much more that I’ve learned, but this summarizes it in a nut shell. I’m learning and my new norm is getting better. I know what I went through is 100% worth it and I don’t regret my decision one bit. I’m extremely blessed and thankful to be a Previvor.

Those of you that are debating about doing the surgery, I’d like to share my favorite quote with you…”You don’t need permission to start. You control the starting line. You don’t have to have it all figured out. You’ll figure it out along the way. Ready is a myth” ~Matt Cheuvront

My words of advice, for those of you who will watch someone go through this or make the tough decision, is you don’t have to have the right words to say, have all the answers, or take away all the pain and stress that comes with this. Simply be there for them and listen to them. You don’t have to always be responding back with cliché sayings that everything will be alright or whatever. Support their decisions – whether you agree with them or not. Listen to them. Pray for them. Pray with them. Encourage them. Love them. Be there for them.

Cheers to my Rocks! Thank you for teaching me much about life, about myself, and that scars are a beautiful thing. Happiest of birthdays to you!

4 thoughts on “What I’ve learned being a Previvor. Happy Two Months :)

      • I definitely cannot wait for exchange, but my tissue is so tight, they only expand 60cc’s every 2 weeks 😦 no telling when my exchange will be. BUT I’m hanging in there and hoping for the best! Keep up the great blogs! So nice to know i am not alone!

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      • Thank you!! You aren’t alone!! If you ever have questions, don’t hesitate to ask! I cannot wait for my exchange also! I was lucky in the fact they filled me 200CC at time of surgery, and only had to deal with two fills after. I have an appointment next week to see if my skin and stuff is ready to move forward with the exchange this year. If not, it will be sometime in 2015. Keep hanging in there and being patient. It does get better 🙂

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