Tag Archives: BRCA1

Reconstruction pigmentation

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Reconstruction pigmentation…fancy schmancy term for nip tat.  Yup, I get my nipple tattoos tomorrow.  Tomorrow marks the end of this crazy almost 2 year journey.

I.CANNOT.BELIEVE.IT.

No more going to the doctor once a month, no more using my vacations to have surgery, no more inconveniencing the people in my life to come take care of me, no more worrying that my boobs are ticking time bombs.  AWESOME, but a little strange.  I have really gotten to know the people involved in my journey at the doctors offices that I have visited.  They were an integral part of my recovery and mental health.  They were there and supportive every step of the way, rooting for me when I was struggling and cheering for me when I was overcoming.  They have seen me at my best, and they have seen me at my worst.  It will be a little strange not to see them all of the time.  This is a good thing, I know, just a little weird.  They will probably never have another patient who calls herself a petittle…(see my post about my failed nipple reconstruction of that doesn’t make sense).  I have realized how important compassionate care is, and the teams that have taken care of me exemplify that.  I can only hope that as a nurse I can provide my patients and families with that level of care.

I have no idea how tomorrow is going to go.  I don’t currently have any tattoos so I don’t know what getting one feels like.  I also don’t have normal sensation in that area.  Do any of you have any big scars?  You know that feeling when something touches that scar?  It goes right through you. Not pain, but it gives me the heebie jeebies (sp?).  I’m not sure how a few hours of that sensation will be.  I don’t like it when I have it for a few seconds.  Either way, it’s temporary, and will be over before I know it.

In case you were wondering, I am waiting for the day when some person that doesn’t know me that well asks me if I have any tattoos…oh the ways I could respond. Maybe I should just always wear a button up shirt and no bra so I can just rip my shirt open and say “check out these puppies” bahaha.  I would give some poor soul a heart attack.  Maybe I should get smiley faces or green colored nipple tattoos.  That would really throw people off. You never know…?

Wish me luck.

Nip, nip hooray!!!

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Nip, nip hooray!!!  I got me some nips!  Everything went as planned during the surgery and I am recovering well.  My throat is sore from the stupid ETT and my pee smells (anesthesia pee…yuck!) but other than that things are looking good!  This time they gave me these nipple shields that make me look like I have headlights (I will post a pic on the pic page).  They are funny, Liz thinks they look like mini fish bowls. Bahahaha.  They are a little difficult to hide under clothes, so I am sure I will get a bunch of strange looks when I am out and about.  I may decorate them.  No pain there though!!!! The Dr. Extended my lat scar on the right another 2 inches or so under my arm so that he could revise my muscle flap.  I think it was for cosmetic reasons to take down some of the bulk there, but that’s were I am sore. I will pos a pic of that as well.  I wouldn’t call it pain, more of a deep ache. He must have really manipulated that sucker, and the incision site burns a bit.  Not too bad!  God was looking out for me like he always does.  I am still in awe of the the skills He has blessed people with.  To be able to recreate body parts and make people feel good about themselves in what could be a truly horrible situation is remarkable.  Well done Dr. Greaney.

Lets hope the bad boys take!!! I will keep you all updated!

It’s the little things

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It’s the little things.

It’s amazing how it’s the little thing that really make your day.  These are the things you tend to remember.  It’s that person going out of their way because the wanted to, it’s that person who took a moment to send a prayer because they wanted to, it’s that person who picked up the phone just to say hi because they were thinking about you, and it’s that person who posted something nice on your Facebook wall or sent you a nice pin on Pinterest.  I never really paid attention to the little things.  Well not consciously anyways.  This entire experience has proved to me that the little things matter.  The little things make up the big things.  I have really gotten to take a step back and pay attention to the little things…

a phone call from my brother Michael everyday

a second card in the mail this weekend from my co-workers in PACU just telling me to heal because they miss me at work

countless amount of cards from countless numbers of people

its the wonderfully beautiful pin that Julie Hamilton sent me on Pinterest that made me smile.

its the pictures from my brothers and sisters showing me the funny things that my nephews and nieces are doing, like fake tattoos and an elephant named earplugs

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it’s the message on Facebook from my Aunt Kim telling me a funny story that explains no matter how silly the question, it’s been asked before and is valid.

its the card sent every single day from my Grandma that makes me smile

its Brock Stine who sent me the nicest email anyone has ever sent me

its my sister Annie who came to take care of me one weekend, and who always answers the phone when I need someone to talk to

its Lois Atwood who is my moms friend that doesn’t know me very well but came to visit me and see how I was doing just because she wanted to and prays for me always.

its my brother Patrick surprising me on Thanksgiving by driving up from Nashville

its my sister Amy, her boyfriend Mychal, and my brother Patrick coming to spend New Years Eve with me even though we weren’t doing anything special, just so I could have a fun night

its the many people who left encouraging messages on my blog cheering me on!   I love them

its the super fluffy robe from my Aunt Judy that made pinning my drains after a shower so much easier

its Julie Lurwick who continues to visit me even though I am really no fun

its the people like Kris Armstrong that have offered help and support from afar

its my sister-in-law Erin South who researched bras for me and recommended some

its people like Liz McElroy who has passed my blog on to her plastic surgeon friends so that they can experience from a patients perspective, who also with her other WOCN nurse Kersten sent me a beautiful Sabika breast cancer awareness necklace.

its the phone calls from La at work just checking in even though she’s going through a major health issue herself

its the very thoughtful gifts of things from Bev, Keri, and Julie to help me through my recovery

its the people who took the time to drive here to visit just because they wanted to see me

its all of the people who prayed for me because they loved me enough to do that

its people like Keri Sowers whom I haven’t seen since high school that follows my progress and leaves me wonderful uplifting messages on my blog.

its people like Vera who make little notes on my blog frequently that let me know she is reading and she cares

its my husband Eric that cheers me on everyday while I am doing my exercises, is patient with me because I am still slow, cooks dinner even though he doesn’t really know how and has been known to burn things (it was good),takes the time to talk to me when I am feeling anxious and reassures me that it will be ok, sucking it up and doing all the things I normally do because I can’t yet.  These are little things that to me Are BIG things.

its my Dad who came and spent countless hours doing nothing with me and driving me back to Philly (this is a BIG thing), who cooks dinner for me, who has breakfast and coffee waiting every morning when I get up,  who uses the snowblower to clear my driveway and sidewalks when we get 6 inches of snow

and it’s my mom.  This is a BIG thing and a bunch of little things all wrapped into one.  She was there every step of the way, taking care of me when I had a hard time taking care of myself, taking care of my dogs, sleeping on the couch for weeks because I had to sleep on the recliner just so she could wake up in the middle of the night to give me my medicine, the many,many trips to Philly even though it stressed her out, she cooked a month worth of meals to put in my freezer so dinner would be easy, the phone calls on a random day just to see how I am doing, and the prayers.

And it’s God.  He blessed the hands of the doctors and nurses that took care of me, he heals my body and soul, he is listening to the countless prayers that I have sent up even though I don’t deserve his Grace.  He listened to all of those who prayed for me.  He showed me that people are good and people take the time to show his Grace by doing the “little things”.

See, these are all little things, things that people have done, not thinking twice about doing them that mean so much to me.  It’s these “little things” that helped me get through this.  So, you see, the little things aren’t little things at all.  They are H.   U.   G.   E.  

Thank you everyone.  There are many,many other people who have done “little things” for me that I have not mentioned, but please know I know who you are and I appreciate your love and support and am thankful.  Oh so very thankful.

 

 

 

Wake up, breakfast, PT,lunch, nap, PT,dinner, TV, repeat.

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Yes my friends, that seems to be my everyday. I repeat that cycle over and over and over again. I don’t really go out to much, because frankly there is no need, I can’t drive, and I DONT WANT TO GET SICK. I am NOT a germaphobe, but I feel like if I got sick right now it would delay my progress. I go out when I need to, Dr.’s appointments, pharmacy, grocery, etc…but I choose to stay in. I want to recover and get back to “normal” (not so sure I was ever “normal”) but normal for me. I can feel it. I am getting stronger and stronger every day. The PT (even though I hate it and it’s hard) is really working. I do it religiously. I don’t know if all of you out there who know me know this or not, but I have a HUGE guilt complex. I don’t like to let anyone down, especially myself. I am bound and determined to get better and to do it by working hard. Call it a middle child syndrome or whatever you want to call it, but I hate it when I feel like I am letting someone down. For example: last week at PT my left shoulder was really tight and it was painful when he was manipulating it (more so than normal). Funny enough, this is NOT the side that I had the seroma on. He told me that I wasn’t stretching aggressively enough. I thought I was doing what I was supposed to, but apparently I wasn’t pushing myself hard enough. So, what do I do? I push myself harder ( not too hard, trust me, I am doing it all within my capabilities). I now stretch 3x daily and do it with more vigor. I will be damned if the Physical Therapist says that to me again. Sometimes you need that, a kick in the butt to get you back on track. I don’t think I ever fell off the track but I needed to push a little harder. Complacency makes one lazy.
So today I had an appointment and then Eric and I had lunch at Plaza Azteca. It was nice to get out for a little and feel like a normal part of the society. Then, our friends Shane and Jill came over to hang out for the Eagles game. I haven’t seen them since the surgery so it was good to get to spend some quality time with them. Good friends are good for the soul.
So even though today was just a random Saturday in January, it was a win for me. My mom is coming back tomorrow to take me to my appointments this week. Excited to see her. It’s always nice when you have someone to hang out with.

Why

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I get a lot of people that ask me why I did this.

“Why would you just go and have major surgery when you don’t have breast cancer?”  

Well, unfortunately my genes don’t really swing in my favor when it comes to breast cancer.  I have been seeing breast cancer ravish those that I love for a long time.  In elementary school my very best friend Lindsay lost her mom to breast cancer.  What a young age to lose someone as important as your mom.   Patty was like my second mom.  I have the opportunity to prevent this from ever happening to my future kids (if I ever have them) or to my loved ones.  I’d like to think that Patty is proud of me for making this decision.  Then there was my Aunt Joyce.  She was diagnosed, and eventually went into remission.  With breast cancer though, if you opt not to have a mastectomy, the incidence of the recurrence of breast cancer in the next 5 years following the first is high. This is what happened in her case.  She lost that battle and we all watched her suffer through the trials and tribulations of trying to balance a life while feeling like you got hit by a truck.  My Aunt Patty and my Aunt Marlana, both diagnosed with breast cancer had mastectomies.  They are doing wonderfully.  So, I guess you can say that I got my strength and drive to have this procedure from my Aunt Patty and Aunt Mar.  They set a good example for me.  Thank you ladies. I love you both.

“Aren’t you attached to your breasts? Are you still gonna feel like a woman?”

Well technically my boobs are attached to me and no, I don’t feel a special “connection” with my boobs.  two fat sacks sitting on my chest…nope no connection.  I have never nursed a child so maybe if I had I would feel differently.  You can’t miss something you never had.   My boobs, to me, are not something that define me as a woman.  Last time I checked I still have other woman parts so I’m good to go there. ;).

“Just because you are BRCA1 positive doesn’t mean you will get breast cancer”

This is true.  But, for me, it was like a ticking time bomb hanging over my head. It was always in the back of my mind.  Sure, there are mammograms and MRI’s and all that happy crap to screen, but in someone my age with dense breasts, mammograms are not a good detector of breast cancer.

“Aren’t you sad that you will never be able to breast feed a child”

Uh, nope.  I would much rather be around to have a child than risk the possibility of getting cancer and not being able to have a kid.  I know plenty of women with normal breasts that have tried to breast feed and it didn’t work out.

“Aren’t you worried your boobs are gonna look funny after the surgery?”

No.  I took a while to research doctors in the area.  This was not a quick decision for me.  Sure, I could have had the procedure near my house with doctors in the area, but if I was going to do this, I wanted it to be done by doctors that specialize in this area and do these surgeries all day every day.  I could not be happier with the doctors that I chose.  My boobs are going to look better after all this then they did before.

 

Hopefully this gives everyone a little bit of insight into why I did what I did.  Feel free to ask me questions or give me input, even if you don’t agree with my choice.  Hopefully I can help people understand my choice.