Posts Tagged ‘BRCA’

  1. I’ve Hit A Funk

    May 31, 2012 by Julie Moon

    ********warning…there is a whole lot of whining in this post

    i have to get it all out before I can get over it ********

    I haven’t posted since I got home from Charleston.  It’s been a week now since I returned.   Honestly I haven’t done much of anything.  I am having a much harder time with this stage than I expected.  It helps me greatly to look back on photos of myself as a happy, bright eyed woman because right now I am not sure where that chick is.  I have only really gotten dressed once in the past week and that was because some friends came over to celebrate Memorial Day.   I barely got off the couch that day and every day since.  So…let’s break it down so I can process all that I’m feeling.

    1- I hate meds.  It’s good I don’t need them on a regular basis because my body freaking hates meds.  I had to quit taking the dilaudid because even zofran wasn’t taking care of my nausea.  I decided I could deal with a bit more pain if it meant less nausea.  I hate how meds mess with your digestion.  I hate that I have to set a timer to remember to take something around the clock.  I’m finished with my antibiotic.  I’m taking extra strength tylenol but last night I tried some Aleve to see if that helped more.   Medicine makes me feel weak…not myself.

    2- I feel guilty.  Summer started on May 16th for my children. I feel like they are just missing out on the first month of summer, stuck with their sick mom in the house or pawned off on other people.  I want to take them to the pool but I can’t get in the pool…which poses a problem when it’s 95 degrees outside and when you have a three year old.   A few people have taken the kids to the pool and I feel like I’m missing out.  I want them to remember this summer as a fun time not as the summer their mother was laid up on the couch.  I’m tired of hearing the tv blaring but little children don’t find things to do on their own easily without some encouragement.  I just feel like I’m in a fog and the days are slipping by.

    3-I’m scared.  I see my wounds and worry about my healing.  In my head I know things are going to go fine but it’s such a delicate thing.  I pray every day that my body will be whole and complete and healthy but I am scared.

    4- I’m worried.  I worry about my brca sisters.  I know so many of them have been looking to me as a strong example.  They have told me their concerns and fears and I have been the champion cheerleader.  I have encouraged them and been their support and now I’m weak and I worry that this might scare them.  I know they want to know the good and bad but I know how scary it can be also.

    5- I’m grateful.  My friends have not missed a beat helping me out this time as well.  Stopping by with food, to clean up my living room or do a load of laundry.  I’ve had plenty of help with my children.

    Last night one of my friends came and got my oldest two children.  She took my wild and crazy 7 year old boy and my 9 year old with a low grade fever who had thrown up the night before.  She has three of her own.  Her selflessness made me cry.  To take a friend’s children when one of them is sick…potentially taking that on for your own family…loving my children as her own was remarkable.  I have said it before…my village is amazing.  Today my sister came and got the little one and they are off for a day long adventure.  I want my babies close to me…they make me feel comforted even when they are driving me crazy.  To be alone is a bit scary sometimes but I think I need this day to process, let it all out and stand back up.  I know my kids are having the time of their life…they will come home happy, recharged, well fed and loved and hopefully I will greet them with a bit of the same.

    How I look has become secondary this week…how I feel is so much more important right now.  I need to feel better.   I’m planning on going out today…somewhere.  I’m going to get out of the house and go somewhere that makes me feel normal.


  2. Stage Two In My Rear View Mirror

    May 25, 2012 by Julie Moon

    I never tire of seeing this beautiful city.  Charleston in my heart is a place of healing.  It is a place of happiness for me.  It was just four short months ago that my life took such a turn here in Charleston.  I made a very tough decision to do something radical to ensure a life free of breast cancer.  And this past week I was able to return to Charleston for the stage two of my reconstruction.

    Two of my very best friends packed up and drove me to Charleston.  My mom couldn’t leave until Tuesday so these wonderful women drove me down for my preop consult.  We then had the opportunity to meet someone who is in the process of her reconstruction as well.   The mother of a good friend of ours who I referred to Dr. Kline and Dr. Craigie. She’s had some obstacles to overcome in her recovery but it was so inspirational to see her and hear her express her gratitude for leading her to Charleston.

    Stage two was lots easier than stage one.  My surgery was only 5 hours instead of 11.  However it was outpatient so as soon as I was in recovery they were waking me up and trying to get me going.  I felt so groggy.  The way you feel when you’re asleep and dreaming and trying to wake up in your dreams.  Everything is blurry and impossible.  It’s so very frustrating to be in that state.  Everytime I sat up my face went pale and I thought I would pass out.  My friend Meg and my mom looked at each other with concern…how in the world were they going to get me into our hotel room.  Eventually they did it…they got me settled in and I slept most of the rest of the day. Right before they got the call that I was in recovery they were preparing to order sandwiches…so their lunch got delayed until dinner.  Sorry ladies!

    This stage they revised my scars on my breasts and recreated the nipple that I lost in stage one.  Dr. Craigie also revised the ends of my donor site scars so they are now flat instead of creating “dog ears”.  Some more contouring was done so that everything was smooth and even.  I am very sore this time but much more mobile.  I still have restrictions for about 3 weeks and will be resting and recovering at home.  I feel so happy with the results.  I still have a bit of a road of healing, getting these wounds to close up completely and some time getting these scars to fade.  I still may do another revision on my donor site in the future but I won’t be doing anything until the fall.  Oh and the best part of stage 2…no drains!  I do however have to wear compression garments for the next three weeks…which makes me a bit nauseous.

    I’m incredibly tired and my body is sore…I can hardly believe that I have two stages of surgery behind me now.  I have already been able to connect with several women locally who are BRCA + and some others long distance via this blog.  It makes me so happy to know that my journey gives strength to these other women.

    My mom and I having breakfast the day after surgery at IHOP.


  3. Bandage Free and 50 days

    April 2, 2012 by Julie Moon

    Would you believe that tonight is the first night I will go to bed bandage free since my surgery on February 1st!   Two month anniversary today and I am so grateful for this milestone.   It is so amazing to be closed…not oozing, leaking, bleeding, dripping, sticking….nothing but normal!  Normal…haha that’s a good one.  But really I do feel great.  I’m grateful that my twice daily ritual of changing my bandages gets the month of April and most of May off.   What a big deal!  This certainly wasn’t anything quite as epic as finishing up with my drains…omg I hated those things but it is good.   We have a long long way to go before I look “normal” again but I have faith and I know it’s going to happen.

    And guess what…it’s 50 days until my next surgery.  I’m so excited about this one.  I’m so excited about getting put back together and having nice round breasts instead of these odd shaped ones I have right now.  I’m so excited about having two nipples.  I’m so excited about losing the skin flap from my donor fat site.  What a big day it will be!


  4. Free Webinar on Natural Breast Reconstruction

    March 29, 2012 by Julie Moon

    The Center for Natural Breast Reconstruction will be having a free webinar on Thursday, April 12, 2012 7:00 p.m. ET / 4:00 p.m. PT

    Sign up here for the free webinar: http://breastreconstructionnetwork.com/rightforme/

    From their website:

    When you join us on April 12, you’ll discover…

    • Exactly what natural breast reconstruction is and whether you’re a good match for the procedures we offer.
    • What all the acronyms mean…DIEP, GAP, TUG, SIEA.
    • What you can expect in terms of hospital stays, recovery time, and scarring.
    • Answers to insurance questions relating to breast reconstruction. Our insurance specialist will be on hand during our Q&A.
    One in eight women in the U.S. will be diagnosed with breast cancer at some point in her life.

    Take Control of Your Life!


  5. Stage 2 on the books

    March 28, 2012 by Julie Moon

    Today I called and scheduled my stage 2 of surgery.  It will be on May 22nd in Charleston, SC.  Same docs, same hospital, same beautiful city…this time I’m really excited.  This surgery will be outpatient but I do have to be there a day on either side…possibly two days post surgery in town.   In stage one they left an oval shaped piece of skin from my donor site (yes my booty) attached to the fat tissue they used to create my breasts…so I have that skin on my breasts now.  Obviously none of you have seen it but it’s something I see every day.  In stage 2 they will remove that skin and I will be left with one short scar out to the side of my breast.  They will also make sure all the fat tissue has survived and remove any that hasn’t.  They will recreate my left nipple which didn’t survive the surgery (out of that skin flap…fascinating right?).  They will also do some contouring to make sure the breasts are the size and shape that looks best.  I do not think I will have any drains.   Hopefully this will be a piece of cake compared to stage 1.  If all heals well my breasts will be finished…done! I am so excited!

    It’s amazing how much I have become accustom to my new breasts.  At first it really felt like they were foreign objects on my chest.  I had such a hard time breathing and being able to stay calm.  Now even though I don’t really think I have regained any sensation in the breasts that I didn’t have when I first had surgery they do feel more normal.  What a blessing that is.  It’s not a concept that I can even accurately describe in words…if you’ve been there…you understand.  I’m growing and changing just like everything in life….grateful for these plants that were sent to me that remind me of just that.

    Did I mention I’m so excited?!!!!!


  6. Six Weeks Down

    March 16, 2012 by Julie Moon

    Yesterday marked six weeks since my surgery.  I can say that I do actually feel like myself again.  I feel like I am on the other side.  I am not totally healed.  I still have gauze covering my wounds and I still have scars that need to be revised and more surgery on the books for the rest of the year but I can say without a doubt that I’m grateful I had this surgery.  I feel happy and healthy.  I know I will regain complete mobility in my arms and that I will feel like myself more and more.

    On Tuesday I had the opportunity to get my hair styled and have some very flattering photographs taken.  It is for something we are about to do at our photography studio.  It was just the boost of self confidence any woman needs…especially one who just underwent a mastectomy.  I felt absolutely beautiful.  I took some time to look back on my photos just after surgery and wow what a ways I have come in those 6 weeks.   I have said it before but science and this surgery is amazing.  I feel so blessed.

    Six Weeks!!!! I can hardly believe it!


  7. Say It Anyway on Facebook

    March 5, 2012 by Julie Moon

     

    I created a facebook page for the blog for anyone interested in following there or sharing with your friends.

    Check it out! Say It Anyway on Facebook


  8. Help Me Save Lives

    March 5, 2012 by Julie Moon

    I spent a weekend in October in Atlanta in a sea of pink.   I was working on the crew at the Atlanta Susan G Komen 3 day For The Cure.   I worked on the crew which means I was one of the 425 who supported 2400 walkers in walking 60 miles in 3 days to raise money to find an cure for breast cancer.

    I carry the BRCA 1 gene mutation.  My mother is a breast cancer survivor and carries the BRCA 1 gene mutation.  My grandmother was a double breast cancer survivor.  My aunt died of complications from her breast cancer therapy.   It is an event that means a great deal to me and my entire family.

    It was an amazing event and I’m so grateful that I was able to participate.  I have already signed up to be on the crew in Atlanta in 2012 along with my mother, her best friend, my brother,his wife, my sister, her fiance, my best friend and a friend I made at the 2011 3day.  I plan on walking my first event in 2013 with my husband.  The 2011 Atlanta 3day event raised 6.5 million dollars for breast cancer research.  I stood in awe at the closing ceremony looking around at all the other people who had worked/walked that weekend to support something that affects me so deeply.  Several of you donated to support my efforts.  For that I am beyond grateful.

    I’d love your support for 2012! Will you help me reach my goal of $500?

    DONATE HERE

     


  9. You Will Heal

    March 3, 2012 by Julie Moon

    This photo is from March 1, 2012.  One month exactly after my bilateral mastectomy and SGAP breast reconstruction.  I have a 10 inch scar from each hip down into a V on my buttocks.  Yes…TEN inches EACH.  I have an oval shaped paddle of skin 5 inches wide on each breast that is a different color from the rest of my breast because it’s skin from my back side.  It will be removed in the second stage of surgeries.  I have an open wound on my left breast and a nipple that has not healed yet.  That nipple will require reconstruction to look “normal” again.  I have two very sore wounds on each hip that are still leaky and healing from having drains removed.   But…do you know what I see when I look at that picture?  I see ME! I see a woman who looks like she used to with a smile on her face.  I see myself wearing clothes out of my closet that weren’t purchased specifically for surgery.  I see a woman about to go to dinner with her family and enjoy a night out.  I see a woman who doesn’t look broken.  My body has undergone quite a bit of trauma.  I am regaining mobility but I am still sore and weak.  But my heart is happy that I am moving forward.  I am seeing myself heal.  I am working hard to make that happen and will continue to do so.  Someday I believe I will feel together, whole and beautiful without my clothes on because I will heal.   This picture gives me hope.


  10. Feeling more human

    March 1, 2012 by Julie Moon

    Monday morning one of my besties volunteered to drive me to Charleston to see the doctor and to get my last two drains pulled.  If you don’t know what drains are, consider yourself blessed.  Having them for a month has been a drag.  I was so excited for this day to come.  We drove straight there…nearly running out of gas because evidently noone thought it was a good idea to put a gas station on I-20 for what felt like 100 miles.  Thankfully we made it to our hotel without having to walk to any gas stations.

    We relaxed for a bit and decided to go out to dinner in downtown Charleston at a great little place  called Blossom.  It’s wonderful to have friends who have lived there because they always give us the best restaurant recommendations.  I love being in Charleston!  We turned in early and watched some crazy tv until it was time to fall asleep.  Isn’t hotel tv the best…you watch things you never would have watched at home.  We watched some TLC show where a child had a parasitic twin removed from his body…wha?

    Tuesday morning we went to my favorite breakfast spot…Hominy Grill.  I have yet to have dinner or lunch there but I have plenty more Charleston trips planned this year.  It was delicious as always. It reminds me of our very own Athens restaurant, Mama’s Boy just with more seafood.   We killed some time shopping at TJMaxx and Homegoods and found a dress that might work for the baby girl to wear as flowergirl in May.

    Finally it was time for a visit and I was so excited.  In the waiting room we met another BRCA 1 family.  A young girl from Atlanta.  It was great to share stories and realize that we were going through much of the same journey.  She had a failed flap in her first surgery….such a small percentage of women have this happen.  So she was there having her second reconstruction.

    At last it was my turn to see Dr. Craigie.  He came in and sat down like an old friend ready to hear how I was doing.  We discussed my recovery and then he got to work.  I had nipple sparing surgery which means we attempted to save the nipple to be part of the reconstruction.  This is difficult because the nipple has the weakest blood supply after mastectomy.  One side has healed beautifully and managed to get a very good blood supply.  The other side has not been so lucky.  We have been using silvadene cream for the past 3 weeks trying to help it heal.  Dr. Craigie cleaned the wound and cut away the dead tissue and now we are working on my protein and letting the skin continue to grow to heal the wound.  Please pray for this to heal.  It is by far the scariest part to me…looking at my body with an open wound.  There still is a chance that there is enough healthy tissue for part of my nipple to survive.  The second stage of surgery we will be able to repair/construct anything that we need to though.  I have full confidence in my surgeon and his ability to make me whole again.  I have seen AMAZING pictures and I believe I will be one of those too.  THEN HE PULLED MY DRAINS!! Woo hoo! It was glorious to be free of those darn tagalongs.  They did a great job but I’m glad to let them go!

    After my wonderful appointment we celebrated with frozen yogurt and then headed on our journey home.  I got to see my baby girl before she went to bed on her birthday! What a wonderful trip!

    Look what my family had on the door waiting for me!