7 months post bilateral mastectomy

What a year!! 7 months after my bilateral mastectomy, 6 weeks post exchange (going from rock hard, dangerous expanders to squishy, silicone foobs) and 2 weeks from moving to Florida!!!  I feel amazing!   I am officially off my weight restriction, my muscles are weak and tight so I am trying to slowly start getting back to an old routine. I need to get on you tube, there is some videos on there for strength training and stretching after having a mastectomy.  I also can hold my boys again!!!  It has been a tough year, I have not been able to hold those two for most of this year. 

I hope to say that I am done with surgery for a LONG time, but time will tell.  Reconstruction is a process... not a surgery.

Looking back on this year..... it has been a rollercoaster of emotion and stress.  That is saying it mildly.  I have come to realize that you can't have surgery without some type of complication small or big.  My complications at the beginning were frustrating, but nothing compared to what my mom has been going through lately.  I am not going to elaborate on that, that is her story to tell, not mine.  During this stressful time of mine and my mothers, I always took my stress out on my mom.  That is not fair, why do you take your stress out on people you love?  My poor mom has been so wonderful and would see it every time and tell me to calm down.  She would always remind me, that roadblocks in life are discouraging, but not devastating.  I think I have had a harder time with her complications than she has. Ultimately my mom and I have grown even closer through this (which I didn't even know was possible, we have always been close). This year we have come extremely close to a lot of our friends.  These people came through during our stressful times and were there for us no matter what. I will never be able to repay them for their kindness, love, and encouragement.  These people have seen us through our worst and best.  We have also severed some ties with relationships we never thought would happen, but unfortunately through our stress and emotions that bond wasn't strong enough to hold.  I had a hard time with that for a long time, but I have moved on and have to remember we also have had the opportunity for some wonderful bonds that have grown stronger through this. 

I can't describe the excitement our family has for the move, but we are also having a tough time saying good bye. 2 weeks... Really?!? It is finally here.  I have been packing like crazy, trying to see everyone we can.  Do any last minute things here in Kansas before we go.  My last appointment with the plastic surgeon got pushed back a week, so hopefully it will go:  looks good, have a safe trip!

Recently, I found out that most likely my mutation originated in Western Europe.  Which isn't a big shock since I think that is all my heritage consists of. There has been a lot of the same mutation in The Netherlands.  That type of information I find interesting.


I have a picture for those women who are just starting their journey....

Also need one that says...  These tissue expanders..... I hate them!

I also want to remind everyone that September is Ovarian Cancer Awareness.  Ovarian cancer is scary, usually caught late.

 

 

 Well, I guess until next time.  Take care!  I should be in Florida next time you hear from me!!!!

5578delAA

It has been a little over 3 weeks since my exchange!!  My incisions are healed and I am on weight restriction for only 3 more weeks.  I have been feeling great.  I have noticed some soreness when I over work my right arm, but other than that I am feeling great.  They do change a lot over the first several weeks.  It is like every morning I look in the mirror to see if I recognize myself!  These things have a mind of their own sometimes!  I have my last follow up with the plastic surgeon in September.  I hope that is my last trip to Kansas City before we are driving on through!!!!

There has been a lot of talk lately trying to understand ones mutation and what does the numbers and letters mean.  My mutation is 5578delAA with a stop codon at amino acid position 1785.  This is a frameshift mutation. What does all this mean?!?  I have no clue.  I just know what my summary stated that this is a deleterious (harmful) mutation  with known breast cancer risk of up to 84% and ovarian cancer up to 40%.  There is a wonderful blog post that talks a little about the different types of mutations.  If you feel like studying, here is the link,
www.bravebosom.com/brca-mutations-made-simple

It really is an interesting article.  I also learned something new recently.  The FORCE website (facingourrisk.org website)  has a BRCA Gene Mutation Database.  I entered my gene into this database and have now met people with my same mutation!  I am super pumped about this.  They even have their own Facebook group.  Which now including me has 11 members!  I am anxious to get to meet these other women and to share stories. 

http://www.huffingtonpost.com/eva-moon/double-mastectomy-whos-breasts-are-these_b_3713800.html

Above I have added a link to an article I came a cross the other day and it really hit home in different aspects.  This article talks about being an independent woman where no body part can define you. I also love the title of the article.... Ask the mutant!

That is all I can think of right now.  I have come to realize that I was a much more interesting blogger when I was on pain medication and muscle relaxers.  I promise to try and find more interesting and humorous topics for the future.

You exchanged what?........

Tomorrow will be two weeks post exchange.It is still hard to believe that I am done with surgery (unless I end up with ptosis- is sagging, Bottoming out-- is one boob dropping out of pocket or capsular contracture - is too much scar tissue, etc...)  I have decided I got my complications out of the way already!! :-)

  I had a follow up and my surgeon was impressed, he said everything looks good.  This is the only acceptable time to be topless and have another guy analyze my chest and telling me how good it turned out, etc...  I have no rippling.  Which even my PS said was actually surprising since most women do.  He even had me lean forward and different ways and still no rippling!!!  I am still on a weight restriction, I have 4 more weeks. My PS has not given me additional instructions such as cardio.  I think it is because of my past and pushing myself too much he knows if he gives me any leniency I will go too far.  Which hey he may be right.  Since he didn't say I was restricted  from cardio I decided to workout today with one of my videos.  I haven't worked out since prior to my mastectomy since I had the complications and then the spasms.  I seriously debated on doing the strength training parts of it with a set of 3 lb weights.  I mean really I am still under my 10 lb weight restriction, right?!?  I don't think my doctor would have been too happy to hear me working out my chest muscles like that yet. I have to remember, although I do not have any pain, I am still healing.  So during those parts of the video I just did some high kicks or some other leg exercise.  So now my legs are like spaghetti!!  I seriously should not have waited so long to get back into some what of a routine.  This is going to be a long road to build me back up. 

So anyone who is part of the BRCA groups on facebook is fully aware of the new trick that is going around for girls that have either had breast augmentation or breast reconstruction.  If you have saline or silicone implants for any reason, if you hold a flashlight up to them.  They glow orange.  When I first saw the article... I was like "Sweet I have to try this."  And sure enough it works.  It doesn't just kind of glow---- They full on light up the entire breast.  What a cool trick, huh!! Just one of those tricks that you can really only show a select few of people.

I went bra shopping for the first time since my mastectomy.  I went to Dillards, but didn't want to spend a lot of money since my chest will still be changing a lot for the next 3-6 months and what I fit in now may not be what I fit in two months. So I went to the associate and was like here is the deal... I just had a mastectomy with reconstruction, my chest is still changing a lot so I don't want to spend a lot of money, but I want a couple of bras with out padding or push up.  What do you have for me?  She was super nice and took me over to the clearance rack and helped me find a couple of simple bras without padding. That was a lot of fun!!!  I can't wait until my chest has fully settled and I can go to Nordstroms or somewhere and get a good fitting and buy some new bras!!!

Guess what we are a little over 6 weeks from moving to Florida!! I can't believe it.  I have one more follow up appointment in KC at the end of September. I am hoping that is my last drive to KC until I am going straight through and not looking back!!!! I had an interview last Wednesday and have a second interview with them this coming Wednesday.  It is in an Emergency Department that is a little bigger than the one I worked at here.  They are in the final stages of becoming a level 2 trauma. I am a little nervous and excited.  It has been 2 1/2 years since I have worked in the emergency department, but I always enjoyed it.

Now I have to talk about my kids.  Connor just recently turned 3!  And Braydin started kindergarten.  I can't believe how much they have grown up.  It seriously is too darn quick.  I am proud to say that I must be doing something right (at least part of the time...)  We generally stick to fairly healthy foods for the boys a lot of fresh fruits and vegetables.  Sometimes we do allow them to be kids and will cook not so healthy meals for them.  Today for lunch we made chicken nuggets, french fries, cucumbers, and cantaloupe.  Both my boys asked me if they could have more cantaloupe and cucumbers instead of their french fries. I was shocked.....Of course you can choose to not eat the unhealthy, fattening food for fruits and vegetables!!!  I do hope they keep up on their healthy eating habits when they get older.   

I don't have a whole lot more to talk about right now.  So have a good rest of the weekend!

Squishy!!!! FYI: little personal but no pictures

Had my exchange surgery yesterday!!  It is so great to be done.  Surgery only took a couple of hours and I could tell an immediate difference from the tissue expanders to silicone implants.  I no longer feel like I am going to injure someone if I hug them.  I am sore (feels more like a pulled muscle)  but that is it.  Since my nerve endings were cut during my mastectomy, I have no incision pain.  Rightie is quite swollen and bruised.  I am guessing that side had a lot more scar tissue. I was shocked after my surgery, due to the amount of disappointment when I first saw my chest.
  I never would have guessed my disappointment though after surgery. I think part of my disappointment is that I have wanted an augmentation for years.  Never did because I was worried about breast cancer in the family and if an augmentation would make it harder to find.  Seeing pictures of girls that had augmentations, everything looks perfect and lays just right.  When you have extra tissue over your implants everything just looks better.  I know mine will never look like that, but hey it's only minor, not devastating. One thing my muscles are still tight and holding in my implants which makes them not look natural and smaller. Also my nipples are not even with each other, but that is most likely due to the fact that my right one is being help up higher by my muscle.
I didn't know really what to expect after surgery, so I got a hold of my girls on prophylactic mastectomy website.  Those women are amazing!!! They told me that over the next few months, my breast will change almost daily.  Once the muscle relaxes and my implants drop they will look a lot more natural and will be a little bigger.  When I wrote about being disappointed, I also felt guilty.  I don't have breast cancer and now never will, so I should be over joyed. I am, but also it is tough to look in the mirror right now.  My incision is bold again and now my boobs have a different shape.  I also think I have some fluid build up on my right side.  My PS also said that I may want fat grafting 3-6 months down the road. You don't want to do that until your implants have had a chance to settle.  As of right now my right one sits a little funny, and my plastic surgeon is a perfectionist and if I was staying he would probably go ahead and schedule me to get the grafting, but he said just to get a PS in Florida, that way if I want I can have minor touch ups.  I have to say this surgery was a whole lot easier than my mastectomy, but it is still exhausting. I think I took 3 naps yesterday, after I got home.  My poor husband, I think I fell asleep once when he was talking to me. 

( This is my reminder that my boobs will become more natural, until then be happy they are squishy not rock hard boulders!!!)

Also, for everyone who was curious... My nasal swab was negative for MRSA!!!  Yea, I know..... I didn't believe it either at first.  As many times as I have taken care of patients with MRSA, I would have bet money on it that I carried it. 

One of the wonderful women in the prophylactic mastectomy group posted and article about how a mother was able to breast feed her newborn after having a bilateral mastectomy.  The mother figured that wasn't going to be an option and sadly excepted she couldn't breast feed.  This article shows the compassion people can have for one another, when the lactation consultant offered to have her try breast feeding with a supplemental feeding system. 

http://fullbellysisters.blogspot.jp/2013/04/opening-closed-door-unexpected.html


I  tried Jamberry nails today for the first time!!!  I can't believe how easy they are to apply.  So much better than painting your nails.  I first off and not that great at painting my nails with out making a mess.  The other part of these that I love is, my nails chip and peel so within a day my nail polish looks horrible.  I think these are going to work great for me!!  So if anyone wants to try these... I know a great consultant to go through!!

Scars are Sexy

I am one week from my exchange surgery!! I feel like I am getting close to the finish line now.  I am starting to get that nervous feeling you get before surgery, but this is minimal compared to my mastectomy.  It is still weird to say that I have had a mastectomy and I am only 30. Right after surgery when I had to have my incision revision, I had  a quick pre-surgery questionnaire that morning.  The nurse asked me if I had anything metal in my body.  I said "yea I have a surgical clip in my left breast from a needle biopsy from last fall."  He then gave  a weird look and said "well, I guess I will write that down in case they didn't remove it during your mastectomy" Me (who doesn't think before things come out of my mouth) said  "Oh yea, huh.... I don't have my boobs anymore, why would that still be there?"  I just never thought about that until then. 

My poor kids have been so confused during this process.  Connor (almost 3 years old) loves to snuggle.  We will lay on the couch and he will lay his head down on my chest.  Poor kid, my chest has no give, so it just props up there.  He now when another woman picks him up, he will press on her chest and say "squishy."  Wow.... what do you say when your child does that?  I can tell you from experience... you're left kind of speechless.  Now what is he going to think in another week, I will be back to being squishy.  He is going to think my chest has some type of magic powers! 

I saw this picture posted by another girl who has had a bilateral mastectomy.  I really like it.  It is tough sometimes to look in the mirror and see the scars, but I know they will fade and those scars could very well have saved my life.

 

 

 

Having this done has been emotional and I have wrote on this subject before, but I think the toughest emotion is "survivor's guilt."  That is the closest I can come up with, that term is generally used for cancer survivors when they have the guilt feeling when they meet someone who does not have the same prognosis.  Lately a lot of the women I have connected with on some support groups have written about their own battles with cancer, or one in particular writing about sitting with her sister (who was diagnosed with stage 4 breast cancer with a poor prognosis) while receiving chemotherapy at age 37.  I feel so much guilt when I read about these women who are struggling to live and were not given the same chance I had.  Hate to get all sappy (I will put my emotions away now)  I just have to get it out there. 

 

So I bought myself a pair of Toms before my mastectomy.  They worked great, I didn't need to lace them or bend down to put them on.  They are perfect to just slip on.  Well, Cain has been making fun of me since I got them. He tells me they are prison shoes.  I fight back "no, they are not prison shoes, they look nothing like prison shoes. "  Not that Cain or I would know, neither one of us have been to prison.  So we decided to watch this weird Netflix season "Orange is the New Black."  Well in the first 30 minutes of the show, this rich yuppy type girl goes to prison and they hand her the prison issued shoes and she says "These are like my Toms!!!"  Ha Ha!!! Cain will not let me forget that!!!Now I do have to live with him calling them my prison shoes. 

 

We went camping this weekend with a great family!  Cain and I thought it would be a great idea on Friday night to leave the rain fly off so they boys could look at the stars since there wasn't a rain chance that night.  Well at 5:30 Saturday morning, Cain and I shot straight up out of bed and out of the tent after we both got a few rain drops on our face.  So yes we had to half asleep place the rain fly on that morning to prevent us from turning our airbeds into rafts!!That was a fun way to start the Saturday.  We love to go camping.  My back and under arms have been burning most of today, though.  My chest is not a fan of air mattresses.  I still need to make myself a nest while I sleep and I forgot to take all my pillows I need to use while sleeping, but it was totally worth it!!

 

Connor's third birthday is 4 days after my surgery. I am feeling nervous that I am not going to feel quite up to par for his birthday, but I should be all right.  The Saturday after Connor's birthday we are taking him to Tanganyika Zoo outside!  I am getting excited, Connor loves animals and this one seems to have a lot of interactive exhibits. I think Connor is going to love this!

 

Next time I write should be after my exchange surgery!  I can't wait to tell you guys how I feel!!! (probably squishy!!! Hee Hee!) 

 

 

 

 

 

Kid... You are going places

I got my results back from my pelvic ultrasound and my CA-125.  Everything came back normal.  I have another 6 months before I have to do any more screening!!! Yep that's right, I finally am going to start feeling normal instead of feeling like a science experiment.  I also had a MRSA swab today.  I wanted to say.... Let's just treat me like I a carrier so I don't have to get swabbed.  Aren't all nurses carriers?!? So I will have those results early next week.  That won't change much for my actual exchange surgery.  I will just have a different antibiotic given during surgery.  My exchange surgery did get pushed back to August 5th.  I have to be in Overland park by 6 am.  That is going to be an early morning.  We will be leaving here at 3:30.  Yuck!!!  But I will be so excited, it won't matter!!!!

Today while I was driving home from Manhattan, it donned on me that it has been right at a year since I first found out about my BRCA status. That day,   I had just spent the afternoon shopping with Cain. Cain was just about to start working out of town and only home on the weekends, so we decided to spend the day together.  On my drive to go pick up the boys  from day care, I received the call.  I was told when I left the genetic counselor's office that if the nurse called.. I was negative, if the doctor called I was positive.  So I answered the phone and I don't remember much of the call except " Hello Jessie, This is Dr. K......"  I pulled over on a side road (Repp road to be exact) and she talked a little longer and then right before we hung up, I asked her to refer me to a breast surgeon.  I sat there and cried for a while before I got back on the road to go pick up the boys. I was the 6th person (out of 6 tested so far) that was positive.  That is right, at first we had a 100% rate for positive BRCA 2 mutations. Since then there has been some negatives now.   After that day though, I got focused, I focused on what I needed to do to get rid of my risks.  What a year it has been and I am almost done.  A little over 2 weeks and I will be done! Done! Done!!!  Well, unless I decide to have lipo fat grafting done ( I am thinking I may just want the lipo fat grafting, just so I can take care of some of this extra "softness" I have aquired from this inactive winter/spring).  That would be a while down the road after my implants have settled and if I end up with some rippling or something. 

Talking with mom today, she is having a tougher time healing.  She has a seroma on her right side, which has caused a pinpoint opening at her incision that has started draining.  Her left side is just now starting to finally heal.  We had a long conversation on discouraging vs devastating.  This situation by all means is discouraging.  We are just grateful that this discouraging situation isn't a devastating situation where we are dealing with cancer. I couldn't imagine not having my mom to turn to.  Family means everything, don't ever let anything come in the way.  I have grown a lot through this and truly appreciate what is important in life.  And not to let discouraging situations devastate your life.  I have a beautiful family, with 2 perfect boys!!

So I can't believe I almost forgot to say.... We have our house in Florida!!!!  We will be leaving the sunflower state either October 1 or 2. Yes in a little over 10 weeks we are leaving!!!!!  Can't wait for our new adventure!!!!

Another exciting (not BRCA, boobs, or cancer related)  note....... My youngest son is potty trained!  And I have to say, he did it on his own. I wasn't going to start trying until after the move, but he came up to me one afternoon and said "mom, I have to pee!"  Talk about excited!!! He will be 3 in about 3 weeks.  He has been so proud.  Everytime he went pee at first, he would get excited and say "mommy... I make yellow!"  Then I would laugh and hug him and tell him how proud of him I am that he made yellow in the potty.  Well, the other night after he went pee, he looked at me and said "mommy, I make blue!!!" Then, I look at him and say " wow kid... you are going places in this world, because that is talented!"  That has been my interesting life with my almost 3 year old.  This is my child who is going to put me through the ringer.  He is ornery in every way possible. 

I need to come up with something new to talk to about now that this part of my journey is almost over. 

I will update after my surgery!!!  I can't wait to feel like a woman again!

30?!? No not me!!

So I have decided to just add an update.  I can't believe I am turning thirty on Saturday!! Seriously.... old people turn 30!  Haha... just kidding!   Well, turning 30 comes with a whole new set of surveillance.  On July 8th I will be having a pelvic ultrasound and a CA-125 drawn.  I am already starting to get nervous thinking about that.  I have a tough time when I am waiting to have tests and results that I have no control over.  I still don't want to have a BSO (bilateral salpingo oophorectomy) yet, which is ultimately having my ovaries removed. But the more I think about having to go through the anxious waiting every 6 months waiting on results, the more I think that will be an option sooner rather than later.  On July 11th, I get to meet with the plastic surgeon to go over what to expect on August 2nd!!!!!  I am so excited to have my exchange surgery.  I think I bruised my friend this weekend, when we put our arms around each for a picture and I ran into her with my boulders!!

This weekend we took the boys camping with a family that has boys close to our boys age.  We have been friends with these guys for about 8-9 years.  This weekend was so much fun, nature trails, fishing (without hooks, of course... the boys ages were 6,5,4, and almost 3, we didn't want to be pulling hooks out of boys heads this weekend) campfires and just crazy, stinky little boys! It was a bittersweet weekend.  It was a good-bye weekend.  I hate good-byes!! They are moving in a week.  I know I  need to get used to good byes with moving in 3 months, but it never is easy.  I don't look forward to saying good bye again. We just need to bring our people with us to Florida! :-)

The past couple of weeks, I have found a couple of great groups on facebook for breast cancer survivors and/or BRCA positive women.  The first group is Young Previvors,   https://www.facebook.com/groups/bravebosom/ and the other is Beyond the Pink Moon, https://www.facebook.com/groups/BeyondthePinkMoon/.  The first group is focused more towards BRCA positive women and women with high risk family history of breast cancer without BRCA mutations.  The general amount of people in this group have not had cancer, they are doing different surveillance measures or prophylactic options.  The second group has more women who have had breast cancer.  Both of these groups are amazing!!! These women are so supportive and also are great to ask questions and have discussions with.  I highly recommend both of these groups!!!!  I have to say, I am grateful for all the wonderful people I have met along this journey!!



There is a blog I have been following that has reminded me why I went through what I did..  But doctor I hate pink, http://www.butdoctorihatepink.com/
She is an amazing blogger!!!  I can not believe the fight, strength, humor, and love and she has terminal breast cancer.  She is an amazing inspiration, her blogs make laugh, make me cry,  make me angry to see what cancer has done to families, make me grateful I am not fighting cancer.  I have read some women who have talked about having survivors guilt when they know/meet someone with a different prognosis.  It is difficult to explain, I feel this, too.  My mom and I received a letter the other day from a woman  who wanted to thank us for the letter and was telling us about her mother/daughter story.  Both of them are fighting breast cancer and was diagnosed about the same time with it.  I felt guilty that I had the opportunity to not have to fight that fight and many women are not so lucky.