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. 

I have a date!!!!

Yes!!!!! I have a date!!  The official exchange day( as another blogger posted -- D-Day, cute pun, huh!) is August 2nd (that makes not quite 6 months from mastectomy to final surgery!!).  It is an outpatient couple hour surgery.  My tissue expanders will be removed (that can not come soon enough!) and my soft new implants will be placed!!!  I can't wait to no longer have misshapen, hard boulders!! My surgery is on a Friday and the nurse told me I can most likely return back to work on Monday.  She told me I am tough, so I probably can handle it. HA! I don't know if I have ever considered myself tough.


 This last weekend I went dress shopping for some summer weddings I will be attending.  I now can say... It is extremely hard to go dress shopping with misshapen boobs.   That means absolutely no V-neck or lower cut necklines.  Also it helps to find something with a little ruffles to distract from the shape.  I also have noticed now that it is swimsuit season... I will need a new swimsuit.  I don't plan to buy a new one this year, since I am not quite sure of my shape and size until after August.  My swimsuit now, well we will say it feels a little inappropriate.  I bought me a new swimsuit last year.  A slimming swim dress with a V-neck.  I chose a V-neck because I never had much in that area and helped keep me from looking quite so small.  Well now that I am not that small and now somewhat misshapen... it doesn't look quite right.  So I just hurry and get in the pool with the boys and try to stay in the water up to my neck! I am excited for swimsuit shopping, I will have so many more options now.

I spoke with my plastic surgeon this last appointment about us moving to Florida.  He said I could have my exchange surgery done down there if we wanted to move sooner.  I said no way.  I want to finish up here with who I know.  My husband and I agreed that we needed to get this done before we move.  My surgeon did tell me to get a consult with a plastic surgeon down there, that way if I need something I am already established as a patient.  Sometimes after implant surgery, you will need fat grafting to help even out/smooth some of the areas, that is some things I can have done there, if needed.  I no longer need to go to KC weekly, although it has been much more enjoyable since Cain's uncle has started driving me.  I am sure I was quite entertaining also!  I was taking a valium before the trip to help keep the spasms down after my fills and well I am a talkative person anyway.  So after taking the Valium, I became real, real talkative!! But hey... that shortens the drive, right:)  With my surgery being scheduled August 2nd, I should be completely released by the middle of September. I say SHOULD BE, because you never know what can happen, but hopefully I got a my complications out of the way.

( people may think this while I am on Valium)

Another thing I have to say, this still makes me smile... A couple of posts ago, I had put how funny it was that it was completely appropriate to start a conversation with "Your boobs look great!"  Well this last weekend, we went to visit my husband's grandma ( I love this lady, sweet, loving, caring, and funny woman).  Anyway she follows my posts and keeps up fairly regularly about my surgery.  The first thing she said to me when I walked in was " Hey Jess, nice rack!!"  How can you not smile at that!?!  Like I said, I love this woman (she has a great sense of humor)!! Seriously though... she is one of the most caring people I have ever met and is willing to do anything for anyone.


Well, It will probably be a little while before I have an update. I will be meeting with the surgeon a couple weeks before, to discuss the surgery and answer any questions.  Other than that... my life better be pretty boring until then!! So until next time... Take Care!! I am almost done!! What! What!

~Jess

4 months today

I know I just updated a couple of days ago, but I realized today, it has been 4 months since my mastectomy!!! 4 months, wow!  So much has happened in the last 4 months.  I realize now, how quickly things have changed in a short amount of time.  There were times I thought my tentacles (no not testicles for all you dirty minded people)  AKA JP drains were going to be permanent attachments to my body. Or when I thought I was going to have my tissue expanders forever because my incision wouldn't heal.  Now I am fully expanded and will be having surgery in 2 months for my implants!!!  Time really does go fast.  I feel great now!!  This procedure really has been only a temporary inconvenience. 

Today, I stopped by and saw some of my old ER friends.  It has been over 2 years since I worked there.  It sure doesn't seem that long.  Also it made me think about, it has been over 5 years since the night that Dr. Hinkin spilled water on me and everyone joked about my water breaking, and then later that night Braydin decided to enter this world (5 weeks early). All my co-workers couldn't believe that happened.   It sure doesn't seem that long ago.  This has put a lot of this in perspective.  4 months is not a long time.  Or to think 6 months total will be my time frame from starting my journey (mastectomy to exchange surgery).  That isn't bad.  Then all this will be behind me and I won't have to worry about breast cancer. 

I look at my two boys 5 and almost 3.  My baby is almost three!! He has a really cool birthday 8-9-10.  And boy does he keep me busy!! He is head strong and a go getter.  Also a little clumsy like his mom.  He got his first black eye last week.  I know that won't be the last.  He is a talker like his mom.  He doesn't quit and the things he says are hilarious.  Tonight he said "mommy, I want to lay on your owies."  Luckily I am not too sore tonight, but he wanted to snuggle and for a long time he couldn't because of the pain. My 5 year old will be starting kindergarten this year.  He is my quiet one, more like his dad. 

Lately, I have met several people who have recently been diagnosed with breast cancer, diagnosed with BRCA mutation, or have known someone close to them with either diagnosis.  I have had a lot of people tell me how much they appreciate reading my blogs.  I have enjoyed this, it has been a great way for me to unwind and let my thoughts out.  I hope I am able to help people.  So many blogs I have read, have helped me along the way. 

I wish I had more entertaining stuff to write about, but I just felt like writing.  I still can't believe 4 months today since my surgery.  That is a big milestone. 

I am grateful I didn't have to face this decision before I was done having kids.  I did nurse the boys for the first year with both of them and glad I had that opportunity.  It would have been hard to make this decision before having kids, my heart goes out to all you girls that are/have faced that.  On a different more humorous note... I love funny boob pictures.....




(soon... real soon, until then I have dangerous boulders)


(This is how I hope to feel after my surgeries are all done!)

A show I love is new girl... Maybe because her name is Jess

(mine will never have to go to boob jail again!)

Smile.... Life is short, enjoy it!

Until next time..... KEEP CALM AND CHIVE ON.....
(love the chive website... always a great place for a good laugh)

That was one large article

So I have been slacking and haven't updated in a while.  I am down to two more fills!! I get one tomorrow and I have an appointment next Thursday which I will schedule my exchange surgery then.  I am so excited to no longer be going to KC once a week.

So this last Sunday, my mom and I were in the Manhattan Mercury paper.  I knew the article was going to be in that paper, but I was shocked when I saw the article.  Seriously..... the picture of mom and I took up half the page!!  It was on the front page of section C.  The title was "The Choice."  I was impressed with the article, it was the entire front page and part of another page.  I did laugh, because in the article they put how difficult the lack of activity has been for me since I was an avid runner.  First off.....I have never considered myself an avid runner, I am more of a leisurely run sometimes, when the weather is just right kind of person.  But she was right about how I am generally much more active than I have been lately.  That has been driving me CRAZY!!!!  I have been able to increase my activity drastically the last couple of weeks.  Since having a driver and being able to take medication prior to my fills has been so much better. No more spasms or intense pain!!!  Back to the article though... Mom and I took the picture during a Tornado watch.... It was so windy out... our hair was everywhere.  I can't believe they were able to get a decent picture.  Also, I never realized how much I look like my mom!!  See that picture and there is no question, AT ALL! I must give credit to the author of the article. She did an excellent job.  She talked about Angelina Jolie, gene mutation, background on the surgery.  It was just a good article. Here is a link to the article, but unfortunately unless you subscribe to The Mercury, you don't get to see the entire article.

http://themercury.com/articles/one-woman-and-her-mother-decide-to-have-double-mastectomies

I am still trying to get used to not having any feeling in my chest.  And I think I lost more than breast tissue during my surgery.... I have lost any coordination I previously had (which believe me, wasn't much anyway).  Today when I got out of the company van, it was a tight squeeze between the vehicle next to me and I no kidding hit the side mirror with my chest and thought I was going to break off the mirror!!!!! Luckily I have no feeling in these rock hard boulders.  How would I have explained that to my boss.  Well you see, here is what happened.... I was walking by the van and no kidding my chest broke the mirror.  Have I mentioned before that I can't wait to have my exchange surgery...these tissue expanders are horrible..... and now a bit dangerous.  Kind of reminds me of the movie Cry Baby (I used to LOVE that movie)... Any girls out there that have seen that movie know what I am talking about. I would definitely have the upper hand in that fight! HA HA!

This is what I feel like right now:

Mother of the year?!?

I went for another fill yesterday.  I felt great after my last fill, since I had a driver I was able to take my medication prior to my fill.  This time since I felt great, they filled me an additional 5ml to each side.  I still feel great.  The first night is always a little tight feeling.  I feel like I have too small of a bra on, but that is a much better feeling than spasms every couple of minutes! I feel great today.  I am thinking about trying some simple aerobic exercises to start increasing my activity since I have felt like such a lazy bum.  And I can tell with how my jeans fit, I need to start increasing my activity.  I should probably quit eating potato chips also.  My next appointment I will be meeting with my plastic surgeon and discussing how many more of these fills I will need and possibly be scheduling my exchange surgery!! What! What! You heard me I am almost done.  That light at the end of the tunnel is finally visible!

(How cute is this shirt, Luckily I am almost done and don't need it anymore)



(that sounds appealing... doesn't it?)

I met with the reporter from the local newspaper on Tuesday.  That went well, she was super nice and seemed truly interested in the subject.  She was a year younger than me and seemed amazed at the idea of making such a drastic decision at my age.  I guess I never had the chance to think about what I was doing until I did it.  I had a one track focus once I found out about the mutation.  It was all about getting everything in order for surgery.  The reporter asked me if I would recommend this procedure to other patients.  I felt that was one of the toughest questions.  I do not regret my decision at all, but this procedure isn't for everyone. I highly recommend anyone with this gene mutation and breast cancer in their family to look at all options. There is definitely some other less invasive options, but in the end you have to look at the future and decide what you can handle. I decided being told I have cancer wasn't an option. I didn't want to stress every six months when I had my next round of test is this going to be the time.  I am anxious to see the article.  I will let everyone know when it will be published.  I believe they want a picture and the photographer hasn't gotten a hold of me yet.  Maybe I should get a hold of my hair stylist and have her fix me up before hand.  :) 

I don't feel as talkative today, I am glad to not have any complications to talk about.  So maybe I should talk about my mother of the year situation!  I have been using the roll on icy hot on my back after fills.  It does help me relax a little more.  Well, I had it sitting on the end table and didn't think much about it.  Until Cain came in the room and Connor had licked it.  Yes that's right, he licked it.  Poor kid.. he was like "my tongue burns!"  Just picture it sounding more like a drunk with a swollen tongue.  Luckily, it wasn't very much and milk worked wonders to calm down the burning. I did call poison control.... I call poison control over anything, even if I am not sure if my kids put anything in their mouth.  They have to think I am a crazy, neurotic mom!!  Luckily the type of icy hot we have does not contain aspirin in it, otherwise we might have had a little more to be concerned about.  I think he knows not to go near that again.  This just goes to prove kids can get into anything quickly. Always keep medicine locked up and on a high shelf! 

(I have a feeling, I will see this in my future....)

So your boobs look great

I was going to wait until my next appointment to write another blog entry, but a few things have gone on and I decided to write. 

First off, one of the local doctors has taken care of my grandma and several other family members of my family so she is familiar with our BRCA gene and what our family is going through without even being my doctor.  Her husband works for  the local newspaper, The Mercury. She contacted my aunt to see if my mom or I would be interested in talking to the paper to have an article written.  When Angelina Jolie first spoke out, mom and I were impressed and talked about how great she was able to help raise awareness, but when it came to either one of us to help we both were a little unsure.   It took us a few days to think about it and discussed it with the rest of the family. I don't know why we were so unsure, this is a small community. Manhattan has approximately 30,000 people and up to 55,000 with the students (we all know college students don't read the newspaper).   We ultimately decided to go ahead and do the article, so I should hear from someone this week.  I do want the information out there that this procedure is available to more people than the rich and movie stars.  I also would like to get correct information out.  Naturalnews.com is at it again.  I CAN'T stand that website (that website makes my job a WHOLE lot tougher), but this has topped the cake.  Here is the title of their recent article regarding Angelina Jolie,  Angelina Jolie Inspires Women to Maim Themselves by Celebrating Medically Perverted Bilateral Mastectomies.  What!?!  Are you kidding me?  I was fuming by the end of the article. The comments at the bottom of the article are even better.  One woman who claims she can cure all cancer.... by some type of VooDoo blah, blah, blah.... I am in no way saying this procedure is for everyone, but in their article (and all their articles) everything can be cured or prevented by healthy eating.  Did you know every person has the ability to prevent (and cure) cancer by proper eating?  I am firm believer in healthy eating and healthy lifestyle, you can prevent several issues with eating right, but to say healthcare is strictly a money making business. It just irritates me that all their claims are not backed by anything.  I am science oriented and if it is fact your results should be repeatable.  I also understand with medical technology that this procedure will not always be the way to treat woman with a BRCA mutation, but at this time it is a good option for some women.  Think about years ago when one of the few options to treat breast cancer was with a radical mastectomy..... those were barbaric.  We have better options now than then, but that was your option then.

My last fill I had on Thursday was great!! Cain's uncle was able to give me a ride so I was able to take my medication before the procedure. That made a world of a difference!!! I have not had a single spasm since!!! I will no longer be driving myself.  If Cain's uncle can't drive me for one f them, then Cain will be driving me.  Talking with the doctor this last time, I am almost done with my fills, I am at 345 ml each side! This weekend we took the boys camping for the first time.  It was a blast!! I was worried about me being uncomfortable the entire time with just having a fill the day before, but it was great and I felt wonderful.   Unfortunately our camping weekend was cut short due to bad weather coming in.  I can't wait until our next camping trip!

This weekend I also got to see my cousin that I haven't seen since Christmas.  She cam up and asked how's it going? And I said "oh you know dealing with grumpy kids (they were worn out from camping)" Then she said "your boobs look great!"  I was cracking up.  We talked a little about the procedure, she was BRCA negative.  It was just funny how our conversation started.  How often is it completely acceptable to start a conversation by saying "your boobs look great!"  I talked about how I will no longer need to use padded or push up bras again.  We talked a lot about boobs.  Well, my poor uncle (he is fairly quiet anyway) was sitting at the table also.  He just looked at another family member and said "I really don't need to hear all this."  LOL, all of us woman in the family have become very open about talking about our boobs.

I want to add another blogger for you to check out.  She is close to the same track as I am right now.  She also came saw the same article I did.  The article had shown up on my twitter feed first thing in the morning after Angelina Jolie spoke out.  That was such a great way to start the day. Here is her blog:
http://bilateralmastectomy.wordpress.com/

Here is a picture for you...
( Hello Kitty implants, some things just make you go ..... huh?)


The shirt I want:


I want to have it changed to "Yes, They're fake the real ones would have killed me.
Since I didn't actually have cancer...mine have not tried to kill me, yet.

My husband wants one that say "They're real if you can touch them" Classy huh!!! 

Have a good week.

What do Angelina Jolie and I have in common....

I decided to write my post early this week.  I don't go to the doctor until Thursday, but there shouldn't be any change.  Get a fill, have spasms...... the usual.  One thing, my husband's uncle has offered to drive me to my appointments!! I originally didn't think I would need anyone to drive me to my appointments, my first several fills went great, but my last two have been tough.  My husband and I wanted to keep the boys schedule as normal as possible, so we had decided to have him not drive me and I could deal with the pain.  I am so excited to have my husband's uncle drive me, I am taking pain medication before my appointment!!! This is a big deal to me.  He is going to drive an hour to pick me up, drive us 2 hours to KC and 2 hours back, then he will have to drive another hour home. He is promising me that I am not a burden. 

Anyway, on to my title of this blog.  I have seen a lot of fellow bloggers write about Angelina Jolie having her prophylactic bilateral mastectomy.  My husband told me it is we both have great looking "Brad Pitt" kinda guys.  I said "of course honey".... but she has a BRCA mutation also.  It is a big decision to make.  It is great to see women who have an influence get the word out there.  A lot of women do not feel they have this option.  They feel this is only available to movie stars "who can have anything they want."  This is not the case.  My insurance has paid for my surgery/reconstruction process without question. 

Us "previvors" have been questioned, judged, etc.... with remarks as "isn't that a bit extreme?"  I have mentioned numbers, statistics, blah, blah, blah in other posts.  This is how I put it is perspective.  If you were told you had a 90% chance of winning the powerball....... would you buy a lottery ticket?  Years down the road this may be obsolete.  There may be better options out there.  Right now I am not waiting on what if's and possibilities of new options that may not come in time.  I can't look at my boys and not think I didn't do everything possible to be here for them.

Motherhood = a lot of guilt.... I feel guilty when I don't "cherish every second of motherhood."  I feel guilty when I get frustrated and just want a minute of peace and quiet.  Nothing was like the guilt I felt the other morning.  I was still extremely sore from my last fill and still having spasms.  I was asleep Saturday morning, Cain was already awake with boys.  Braydin came in to lay down beside me and put his arm acrossed my chest to hug me.  I awoke from my sleep in horrible pain and yelled for him to get off. He went down stairs tearful telling Cain that he hurt me.  I started crying immediately after I woke up and realized what happened and felt horrible. Braydin is already my sensitive child anyway and then I yelled at him when he was trying to be sweet.  I came downstairs crying looking for Braydin (not because of physical pain, but because how bad I felt).  By the time I found him, he was ok and playing and moved on.  I had him sit on my lap and I tearfully told him how sorry I was.  He looked at me with those bright blue eyes and said "it's ok mommy, I love you."  He also gave me his blankie to help me feel better.  How does that make me feel..... even worse! He is so full of love and trust.  I want him to keep that as long as he can.

My friends have been so great and motivational.  They cheer me on and cheer me up.  I had one friend get a hold of me today saying...... You had this done before it was popular. What can I say I am a trend setter. HA! I love humor.  Having a great sense of humor can get you through anything!

Hope you all have a great week!!! See you next week, unless something weird happens before hand!

What a process

I had another fill today.  I am still even!! I am now at 320 ml a side!!! I had a long, LONG drive home.  I made it down the street from the hospital before I started having spasms.  It is always my right side.  It is with it being my dominant arm and that muscle is stronger it resists more to being stretched.  I stopped at a mcdonalds down the street from the hospital  I read on a different blogger's post that she used mcdonalds straws to breath through to help focus out the pain.  I tried a kwik shop straw last week... it was too small and hard to breath through. A mcD's straw works better.  After I got the straw I sat in the parking lot for about ten minutes to allow the spasms to calm down.  I didn't feel too comfortable in the neighborhood, I was parked right by a bus stop so there were a lot of people around.  I just locked my doors, played my music and tried to zone out for a little bit.  When I got back on the road, I held my seat belt off my chest and didn't use my right arm to drive.  I was able to decrease the amount of spasms I had on my drive home that way. I sneezed once...... THAT WAS TORTURE!!! Ha! I am now sitting in my trusty recliner with my heating pad, not doing too bad.  Had my Valium Rx refilled.  I have to take Valium at night for the first couple nights after a fill to keep the spasms to a minimum.  On my drive home, I saw a couple of kids hitch hiking.  They looked to be in their younger 20's.  I was tempted to pull over and tell them I will get them to Wamego, if one of them were willing to drive. LOL.  They looked nice enough, but in the amount of pain I was in, my perception could have been distorted.  At that point if someone had a gun to my head, but told me they were willing to drive.... I would have said they seemed nice enough. So long story short I didn't pick up the hitchhikers.  But I hate to admit how tempting it was!!!

My post are probably going to be about the same for the next few weeks... getting fills, having spasms, etc. Exciting huh!! So I decided to add some other stuff.

First all..... Happy Nurse's Week!!! I work with a great bunch of nurses, and I have previously worked with some awesome nurses!! Having great co-workers makes working a whole lot more enjoyable.  I also want to say Happy School Nurses Day!  You guys are awesome!  I would like to especially extend that to two of my favorite nurses I used to work with that are now school nurses... Heather and Tammy... you guys rock!  Also I would like to thank the school nurses in Pottawatomie County that I work with on a regular basis.  You guys work hard and have to deal with me on a regular basis... You have a tough job :)

(I may no longer work in the ER, but I have a special place in my heart for all you ER nurses!)

I also heard it is Teacher's week.  Happy Teacher's Week to all you teachers out there!! You have a truly amazing gift.  You have more patience and provide lifetime skills for so many children.  There is not enough good things I can say about teachers! 

I also that I would add some adorable pictures of the most amazing boys in the whole world!!!

My husband and I for his birthday.

(Braydin and I, me sporting the "mommy" look, yoga pants, Tshirt, no make-up and hair in a ponytail)

(Left to Right: Connor, Me, and my two sister in laws)

(Connor and I being silly with hats!)

 

So the last thing I will talk about on this post is, Cain and I have finally finished season 3 of Walking Dead.  We now have to join the rest of the world and wait until season 4.  On that note I will now leave you all a picture of my Hollywood boyfriend. :)

 

Who would have thought a redneck with a crossbow could be so sexy.  Thank-you Hollywood!!!

Have a good week!!!!

I hate alarm clocks!

I have a confession to make.  I love, love, LOVE the snooze button.  I seriously am the person who sets the alarm clock fast so I have more time in the morning to hit snooze.  A very dangerous situation I put myself in every morning.... morning math when you are half asleep.  Definition of morning math:  trying to remember how fast I set the alarm clock to figure out the correct time and determine how many more times I can hit snooze before I will be late.  Yea great plan I know...works well!  haha.  Anyway, I have a whole new reason to hate the alarm clock.  I have not had the "chest contractions" like I did that night after my last fill.  I do my post- mastectomy stretches several times a day and can keep myself comfortable, but I have a new morning problem.  The alarm clock goes off and I now try to reach over to hit my beloved snooze button when I am stopped mid stretch with a horrible spasm. So now I  have horrible pain in my right arm/chest that I can't move, I can't catch my breath due to the spasm and that D&%* alarm clock is blaring in my ear!! I no longer get to enjoy the snooze button.  It takes me close to 5 minutes before I can ever reach it.  I swing my legs over first and try to sit up strictly using my stomach muscles and then when my chest quits hurting, I can hit snooze.  Well, that process isn't any fun, so I don't try to repeat it 3,4, or sometimes 5 times a morning. Since the change of my alarm clock habits... I get to work in plenty of time in the morning.

So here is my new morning routine.  After spending 5 minutes trying to turn off the alarm clock.  I get up grumbling and complaining.  Yes....my husband calls me "his little ray of sunshine" in the morning.  My youngest is just like me in the morning (he is a very evil child if you wake him up).  So after I get up I head to the shower, have the water extra warm and try to do my first set of post mastectomy stretches.  Between the heat and stretches, it helps a lot to decrease the amount of pain I have during the day. All while telling myself..... This is temporary and this is worth it!!! 

Thought you all could use a laugh at how my mornings go!! I have to smile thinking about it.  Hope you have had a wonderful weekend!

Even at last!

I had another fill yesterday, which has finally made me even!! I am at 285ml on each side!  Woot woot!!! I am feeling it today though.  Typically after my expansions I feel a little tight the night of my expansions.  This time I have been having muscle spasms since last night.  On my way home yesterday, I was feeling extremely tight, but not having spasms then.  I couldn't look over my right shoulder while I was driving home.  That makes for an extremely uncomfortable and somewhat scary 2 hour drive home! I just didn't change lanes often, since I couldn't look to see if anyone was beside me.  But I made it home.  Last night my muscle spasms were so bad it felt like I was having contractions.  Seriously... contractions in my chest radiating to my back.  I could have timed them and according to how close my "contractions" were.  I was close to having a baby any minute.  Ha!  This can be normal for some woman for the first 24-48 hours after expansions, but was a first for me. Luckily having a heating pad on my back helps tremendously to relax my muscles enough to decrease my spasms.  I went to work this morning for a meeting and felt like a complete nerd because I had my heating pad during it.  Luckily I have understanding coworkers who didn't think twice about it. 

So I thought I would give some tips for people like me who put sunblock on everyday regardless if it is summer or winter.  I am scary pale without sun!!! I means seriously scary!  The words from my brother in law "you look like a vampire!"  Thanks D!!!  So I figured I have two options, I could put glitter on and try to pull off the whole vampire look or I can learn how to apply sunless tanner like a pro.  I went with the second option. First of all..... the best sunless tanner ever is Fake Bake Sunless Lotion with the blending mitt!! I get it from Amazon for $15 bottle and with prime membership I get free shipping.  This stuff is awesome!! It can take a few applications to get dark.  But hey I would look funny if I try for a deep tropical dark tan, so for me one to two applications is great.  It is darker when you apply it to help you know what spots you have already applied to.  When you shower, a lot of it washes off, but you still have a nice, natural looking glow.  I like to apply this once or twice a week and then use Loreal Sublime Bronze gel in between uses of the Fake bake to help maintain color.  I also am a firm believer in exfoliating in the shower prior to application. I feel either the exfoliating mitts or exfoliating body scrubs both work.  Lastly, everyone hates the true signs of using a sunless tanner..... the dark spots around your ankles, knees, elbows, and wrists.  After I apply my sunless tanner I rub coconut oil on my feet, ankles, elbows, hands and wrist to help blend.  That helps a lot!  Also do not apply as much tanner to those places.  I have heard Xen Tan Blending Balm works wonders for those areas also, but I have not tried it yet.  I do plan to try it and will let you know what I think. 

I like to mention different blogs that I read.  The blog I want to mention is from my "breast friend."  She has had her ups and downs also with her surgery.  You can't expect to have such a drastic surgery without some setbacks.  She has taken hers with stride.  Such a strong amazing woman and I am so glad I have had the opportunity to go through this process with her. We just happened to meet through the FORCE website on facebook, but have been there for each other during our process.  I would highly recommend reaching out to other woman who are going through the process.  It is so nice to have someone to vent to, to ask questions with.  She has been on the same timeline as me.  Here is her blog:  http://shallowgenes.blogspot.com/

Time for me to go watch ......... The Walking Dead!! Have a good night everyone!!!!

Smooth Sailing

I had another fill yesterday.  I was able to have another 30ml on the left and 40ml on the right.  The plan was to place 30ml to the left and 55 on the right to even them out.  My right side got tight and Dr. P's nurse decided to stop at 40ml.  I am getting closer to being even!!  My chest is starting to look like Barbie boobs (and feel like them, too!).  Really weird.

A couple days ago, I had my yearly check up with my GYN.  He comes in the room and says "you have had quite the year haven't you?"  The last time I saw my doctor I was just starting to discuss the possibility of BRCA testing for me.  Since then I found out I was BRCA 2 positive.  Had an abnormal mammogram, needle biopsy, MRI with suspicious lesions (recommended follow up in 6 months for another MRI), and finally bilateral mastectomy with tissue expanders placed.  Wow, what a year!! We discussed options for hysterectomy.  I told him no not at this time.  I said " I am afraid I would hate my husband after having a hysterectomy."  Dr. also agreed that he wouldn't like to see me have a hysterectomy this young either. 

I found a wonderful blog the other day.  This lady is hilarious!  She recently had a bilateral mastectomy and is at about the same stage I am.  Her blogs are just great!! They can really put a smile on my face.  Here is the link to her blog. http://imgettingmyboobsoff.wordpress.com/
One of the best parts is her talking about when she tells people she chose to have this procedure and didn't even have cancer.  She said the face is priceless every time.  I have to agree with her, because the majority of the time when you tell people that you decided to have a bilateral mastectomy to prevent you from getting breast cancer, most people think that is extreme.  No one knows what to say.  I have the luxury of having a lot of my friends in the healthcare profession.  They seem to understand a  little more why you would go through such extreme measures.  Also, I have met a lot of breast cancer survivors through my journey and every one I met said they would have done what I did to prevent going through what they had to. 

On a total different subject than talking about my boobs all the time.  Which by the way.... my husband has not gotten used to hearing me say "these things are hard as basketballs, here touch them."  Ha, it makes me laugh to think about.  It isn't like I go around telling people to touch my "basketballs," but seriously people are curious. I am curious to know what the girl's boobs look like that I have become close to that had surgery the day before me.  I consider her my "breast friend."  Her procedure was slightly different than mine so I am curious and would love that she was closer to me, so we could compare. It isn't everyday you have a 29 year old that chose to have herself cut off  It has only been close friends and nurses that I work with or have previously worked with.  But as I was saying on a different note.... My husband and I just last week started watching a new series on Netflix, Walking Dead.  I can't believe I have never heard of this before.  We have become such nerds!!!!!!  I never would have thought I would like to watch a show about zombies, but I am hooked.  Which is really bad since I am scared of the dark.  I am so spooked out by the time we go to bed.


Until next time......... Take Care!! Live Life Happy!!!

Did you say books?

I have been slacking on my posts lately.  Well I had another appointment on Thursday.  Finally my incision is healed on the right side!!! I was able to get a fill finally!  I got half as much on my left than my right to help even out my size.  On my next fill (on Wednesday) I will be even.  That is so exciting.  I finally feel like I am moving forward.  I will have weekly fills for a little while until I am at a correct size and then will get my permanents.  I have to tell you all of my husband's autocorrect fail.  My appointment had taken a while (waiting for dr. to check my incision, have the nurse remove my sutures and then prepare everything for my fill.)  Well, my husband had sent me a text asking if I was still at the doctor's office.  I hadn't seen it until a half an hour after he sent it when I was on my way to check out so I just sent him a quick text telling him "yes" with plans to call him once I got to the car.  Well his next text was "are you at least getting bigger books?"  I laughed so hard when I saw that.   I was still laughing when I called him and told "no, my nook really always stays the same size!" 

This weekend I have realized why the doctor told me I could start to increase my activity, but not to do much with my arms still.  I decided to hold my sweet nephew yesterday (while I was standing, so all his weight was on my arms) and he was being so sweet and laying his head on my shoulder, I just couldn't put him down.  I also did some extra carrying and helping my boys play at the park.  So most of the afternoon I had a burning sensation under my arms that wrapped around to my back.  It is not horrible pain, but is uncomfortable and very distracting. 

Starting this July, I will be starting my next round of testing.  I will have an ultrasound done and a CA-125 blood test to check for ovarian cancer.  (Happy 30th Birthday, huh!)  I will be having these test every 6 months until I decide to have my ovaries removed.  I don't know why I am having a tougher time with this decision.  Cain and I are not having anymore kids (we already permanently did that).  I just am not ready to put myself into menopause.  So the other decision is to have testing every six months.  It is scary and I know I will be a nervous wreck every time I am waiting for results.  I will keep you updated after those tests.  The reason I am waiting for these tests is that it is recommended right now for women with HBOC (hereditary breast and ovarian cancer syndrome)  to have screenings for ovarian cancer every six months starting at age 30 (and my 30th birthday is not until July) until you have an oophorectomy (removal of ovaries). 

Also I received my email from KU's Breast Cancer Research thanking me for donating my breast tissue for research.  Prior to surgery I had the opportunity to have my tissue donated or not.  It was a no brainer to me to donate it.  This week it has made me think, how this procedure may have the benefit of not only saving my life, but possibly helping to find answers to help save someone else's life.  Just this past week a girl I went to grade school lost her mother to breast cancer (I believe) either way I know it was cancer.  I hurts to think about the pain cancer has caused this family and many others.  To know that it could have easily been my family going through this either mom or me.  I have had a struggle with this surgery, but I know I made the right decision. 

Here I am attaching a picture of what the process is with a tissue expander is:


Tomorrow my little man turns 5, so I am going to go now and finish enjoying his birthday weekend with him!

Pity Party for two....

So today was my follow up and plan for my first fill.  To start off, I want to remind everyone that I had 175ml a side to start with.  Well, the nurse prepped me for my fills and gave me 30 ml on each side.  She told me that the first one is 30ml a side and then 60 ml side after that if you can tolerate it.  After my fills were complete, Dr. P. came in to check my sutures before the nurse removed them.  Dr. P didn't like the look of my right side incision again.  I had an approximate 3 cm dehiscense on that side. (which is the separation of the incision).  There isn't anything you can really do to prevent it.  At my last surgery the doctor had sutured and dermabonded my incision to keep it intact and it still split open.  Well today Dr. P resutured that spot, applied dermabond also.  After he was done he didn't like how much tension was on the sutures so he had the nurse remove the 30 ml that were placed on the right.  After the 30ml were removed, the doctor decided to have the nurse remove another 35ml to decrease the tension that much more. So now I have 140 ml on the right and 205 ml on the left.  I will need to wait 2 weeks and return to have my sutures removed and to have an expansion done then. I didn't ask, but I assume once my fills get started, I will just have 10-15ml less placed on the left until I am evened out.  I am to contact the dr. immediately if my incision starts to separate again.

So I was emotional again when I left the doctor's office. I called mom and she is good at encouraging me and reminding me that at least I am not dealing with cancer and a year from now I will realize that these were all minor setbacks. I kept thinking as I was leaving the office, I am so glad I get a long so well with my surgeon.  Because I seem to cry every time I leave his office.  I know it isn't his fault. 
  He is great to get along with and explains well what he is doing and why.  I appreciate that so much.  Also, I asked him today if this was going to extend my activity restriction and he said no.  Thank- goodness!!!  I did tell him how happy that made me.  I also said that I as worried that if I was to stay on the activity restriction too much longer that I was going to need lipo along with my reconstruction.  He just laughed and told me that I didn't have any fat cells.  He at least knows the right things to say to make me feel better! :-)

So to explain the title....  I have this wonderful friend I met before my surgery.  I have mentioned her before.  She had surgery the day before I did.  She has been such a wonderful person to talk with during this process. We both have had different types of minor complications and setbacks.  When I was leaving the office today, I saw she had a bad day today and posted on facebook.  " A pity party for one"  Well I commented below saying "Make that a pity party for two, please." 
On my wonderful 2 hour drive home, I have an amazing amount of time to think.  I began to think about everyone has setbacks, everyone has bad days, and I know there are people at there with a lot tougher time than what I am having.  I began to think about a blog I have been reading by this amazing woman who has advanced breast cancer.  She knows her time is near, but she talks about her motivation to keep fighting for every day she has left.  She has amazing spirit and faith.  She had me so emotional the other day.  She is continuing chemo to extend her time.  She talks about the fatigue, nausea, and weight loss.  She takes it with such grace that I admire.  The other day she wrote how she felt like one of those blow up punching bags that kids get.  You punch it and no matter how bad the blow, it always bounces back.  Over time that punching bag loses air and just can't bounce back anymore.  This woman talked about how she was just out of air that day.  Emotionally, mentally, and physically out of air.  I must remember that my punching bag still bounces back after a bad blow. 

Thank-you everyone for my pity party.  I probably will not have an update for 2 weeks since not much is going to be happening until April 11th.

So until next time...  Everyone deserves a pity party once in a while.  Just remember to bounce back and don't let any road blocks stop you!

Waiting, Waiting, Waiting.... Was that patients or patience?

"If it wasn't for my patients at work, I would have no patience at all."  <-------That is me.  I have to wait a week to have my first fill and to have my sutures removed.   When I left the Dr.'s office, I called mom frustrated that I still haven't moved on to the next step.  My mom tried to remind me to look at the whole picture.  She said "remember this is better than having cancer and said don't you want your dr to be a little cautious instead of pushing you before you are ready."  She then told me to try to remember to be patient.  That is a virtue that I was not gifted with at all.  In all fairness, neither was my mother. I remember not too long ago when mom had too wait longer than she wanted to have her drains pulled.  She was so frustrated she had said "I am going to pull them out myself and say they got caught on something and pulled out."  Of course she wasn't serious and had to wait.  I reminded her to try and be patient.  We are great at giving the advice, but not following it.  That is a wonderful trait that I obviously inherited from my mother.  I have inherited such wonderful qualities from her.

So onto the second part of my waiting.  I then asked the dr about my activity.  He kind of chuckled and said "has it been six weeks since your surgery?"  I piped up excited "Yes! It was six weeks yesterday!"  He laughed "Since your second surgery....."  I was like you have got to be kidding me! 4 more weeks on activity/weight restriction. You mean to tell me 4 more weeks before I can pick my boys up? Our conversation continued on to include "that means no running through the month of April."  I don't know what my husband told that man, because he knows me all too well!!!  I wanted to say "Are you going to be including a complimentary liposuction with my exchange surgery?  I am afraid I am going to need it after being on an activity restriction for over 10 weeks!!" So four more weeks of no activity. Yuck! 

On my way home from the dr. appointment, it was lightly raining.  It was just light enough that I needed to use washer fluid every few minutes to clean my windshield and I ran out of washer fluid.  So I go to the rest stop on interstate to buy some.  Right then my mom calls and I told her that I ran out of washer fluid.  My mom said "oh no, do you know where your washer fluid goes?"  I start laughing and ask mom "Did you really just ask me if I know where my washer fluid goes? Of course I know where it goes, do you not know where it goes?" Mom --"no"  I laugh hysterically and refrain myself from lecturing mom on basic car maintenance. I wanted to say "Do you know where your oil goes?  Do you even know how to check it?  Remember a car takes gas and oil to run..."  So the last part I learned the hard way.  I seized up the engine in my BMW, because it had an oil leak (which I did not know)  and I allowed it to get to low on oil. When my dad found out what I did, his face got beet red and I do believe I saw smoke coming out of his ears. Note to all teenagers who think they know everything....this is not the time to say to your dad   "We can all agree that I have had enough punishment since my car doesn't run anymore, right???"  HAHAHAHA!!!! I am lucky to be here today after that smart a** comment.  Have you ever heard the comment, never poke an angry bear? Yea my dad was quite the angry bear that day. 

 (My dad that day)

Enough with my rambling on and on. Even though I am having to be reminded to have patience. This isn't forever and will be all over soon.

Until then Keep Calm and Chive On!!!  ~ Jess

First week back to work

Tuesday was my first day back to work.  It has been so great to see everyone!  I have been exhausted this week.  I don't know if it was from returning back to work or getting used to daylight saving time.  Now it is Saturday morning and I am sitting in my trusty recliner, relaxing.  I am still on my weight restriction, but it has been great to increase my activity. 

I have a post-op appointment with Dr. Ponnuru on Thursday.  I am still hopeful for my first expansion.  My incision look great.  I assume he will remove the sutures on Thursday.  I am actually starting to feel fairly normal, no drains, no pain, the only thing is my tissue expanders are rock hard (hate it, but that's normal). I have added a picture for anyone who is reading my blog who has had tissue expanders.  This picture was sent to me from a friend I met who had surgery 2 years ago.



Earlier this morning I decided to catch up on some of the other blogs I follow.  One girl had her 1 year Bilateral Mastectomy Anniversary the other day. On her page it said "what would you do if you knew you were going to get cancer?"  Through this whole process since July I heard all the statistics 85% lifetime risk of Breast Cancer, already having suspicious changes on my mammogram, etc... Even hearing "its not if you will have cancer, but when?"  I guess it never really hit me (until today)that one day I was going to hear those words that no one wants to hear. So today I sit here and think what would you do if you knew you were going to get cancer?  My answer.... Everything I can to keep that from happening.
  I feel great!  I am happy and healthy.  My family is happy and healthy. What more could you ask for? So here is some more humor for everyone:
(Lets hope I never look like this!)


Everyone have a wonderful day!!!!!!!!

Talkative

I had my quick minor surgery today.  The technical term for my surgery was a Bilateral Mastectomy Scar Revision.  What the surgeon did was remove a couple of bigger scabs I had and brought the wound edges together and sutured them shut.  My incisions looked a lot better than expected once the scabs were removed. I had quite a bit more healthy tissue under my scabs than what we originally expected!  I don't have a whole lot of sutures.  I was able to have just conscious sedation instead of general anesthesia.  Which was definitely a lot better for my nausea. I was still given a cocktail of anti-nausea medication due to my history.  I don't remember a lot of the procedure, but I do remember being quite talkative at the beginning and the end of the procedure.  I remember telling the scrub tech when they removed my grounding pad "that isn't bad, I wax and that's much worse!" hee hee hee..... I hope I didn't make a total fool out of myself.  When Dr. Ponnuru went to talk to Cain he told Cain that everything looked good and in fact that I was doing great and talking.  He told Cain that I  said after the procedure "oh there is plenty of day left for Cain to take me shopping!"  Cain told Dr. Ponnuru "Is there anything stronger you can give her to make her want to sleep and just go home?  :)  The Dr was laughing told Cain something about ethics, etc...  Then Cain  (being the smart a$$ that he is)  Said "oh ethics is that the name of the meds you are going to give her?"  I am so glad this surgery was a lot less stressful for Cain and he has had a great sense of humor all day. 

When it was time for discharge, I had been given sprite and saltines and told to increase my diet as tolerated.  Well I wasn't nauseous at all and feeling extremely hungry at that point and decided on Sushi!! I am sure that is not what Dr. meant by having me increase my diet as I tolerated, but it was so good! It just makes me giggle now to think, right after surgery , sushi is what I wanted. Well, I didn't make Cain take me shopping, I figured maybe I should recover a little bit today.  So we went straight home after eating. 

I have a follow up appointment on March 22.  I hope I get to have an expansion then!!!  I can't wait!!

On a total different note I would like to add for any woman planning to have a mastectomy or recently had a mastectomy is to get this book; The Breast Reconstruction Guide by Kathy Steligo.  I had heard great reviews on the book, but figured I was going to walk in, have a bilateral mastectomy, reconstruction, and do great and have no complications.  Not that I have had big complications, mine have been minor nuisances, but this book has everything!!!  I was able to download this book on my nook for $10.  Totally worth it!!

Also... Happy Birthday Cain!!!!  This hasn't been the most exciting birthday for you, but thanks for being there!