1. Two less fallopian tubes to worry about

    September 20, 2014 by Julie Moon

    I had surgery on Wednesday.  My friend and gynecologist here in town, Stephanie Allen, did the surgery.  She has been a great support through all my decision making and has been great about providing me with articles and research to support my decision making.  I always feel respected and like we are in a partnership for finding my best health plan.

    It was a fairly simple laproscopic procedure.  She removed my two fallopian tubes.  I was told (I wasn’t awake yet when she came to check in) that the right tube had a cyst.  It’s obviously being sent off to pathology and the left tube was attached to my left ovary.  She said she had some difficulty removing the tube.  Hindsight is 20/20 and I don’t know why we didn’t think of this but I wish I had asked her to remove one of my ovaries.  As far as I understand my body can function normally with just one ovary and that would have further reduced my risk.  Honestly it didn’t even occur to me to do that since we talk about them as a unit.

    That’s the only regret I have about the surgery so far.  I am sore but mostly feel like I got punched in the gut several times and I feel a bit crampy as well.  She did remove my iud that was due to be removed as well.  She prescribed me 800 mg of ibuprofen and also some tramadol for pain.  I will be taking the tramadol tonight after a long day.

    She has recommended I start birth control pills to further reduce my risk of ovarian cancer.  This would suppress ovulation thus “quieting” the ovaries a bit.  I’d like to do some more research on that before I begin that.

    Overall…success…down two fallopian tubes and hopefully the pathology will come back clean and clear.  Checking things off the list and being proactive.  I’m kind of over having surgeries though…have I ever mentioned how much I hate trying to wake up after anesthesia.


  2. I made the call

    July 21, 2014 by Julie Moon

    I made the call…to schedule my salpingectomy (removal of fallopian tubes).   I’ve been doing some research about removing only the fallopian tubes now and waiting until about 50 to remove the ovaries.  Yes…it’s two surgeries instead of one.  Yes it will cost more money.  But,  it means I don’t have to go on hormone replacement therapy just yet.  It means my body won’t be forced into menopause at an early age.  There is a good bit of research that suggests that many ovarian cancers start in the fallopian tubes. And for a better quality of life they are suggesting to delay the oopherectomy until closer to menopausal age.   I know this doesn’t eliminate all my risk but there are risks associated with a body without ovaries too.

    Some reading material:

    http://journals.lww.com/greenjournal/Fulltext/2013/01000/Prophylactic_Salpingectomy_and_Delayed.5.aspx


  3. What is breast reconstruction?

    July 3, 2014 by Julie Moon

    Someone showed me this video this week and I really loved how it explained the differences between all the different methods of reconstruction.  I thought this would be helpful for those out there researching their options.

     


  4. Research Time

    April 6, 2014 by Julie Moon

    So I met with the gyn…she had lots of great information for me.  First we talked about the oopherectomy itself and we actually talked about a study that had been done recently that suggested removing the fallopian tubes and not the ovaries was a good preventative step.  She copied the article and I am going to read it and see what my thoughts are on this.  We discusses hormone replacement and she explained bioidenticals and where the raised interested in compounded medicines came from.  When I do remove my ovaries we will have to test out different things to see what makes me feel most normal.  There will be some bumps along the way but she assured me the she felt confident we would figure it out.

    She said to just let her know where to be and when I was ready and she’d take whatever out that I wanted. Ha.  We can always continue with surveillance.  I am monitoring my CA125 levels each year and I can also request to have ultrasound done to just look at things.  I will be 37 this year….decisions decisions.   I have no idea what is a “natural” menopause age for women in my family.


  5. Ooph….

    March 28, 2014 by Julie Moon

    ovary

    Sometimes I like to ignore the fact that I have a BRCA 1 mutation.  The truth is that I actually forget.  I sometimes even forget that I have had 4 operations to rid my body of any risk of breast cancer.  I never forget when I’m undressed but fully clothed…I forget.  I have felt brave, smart and proactive while dealing with my mastectomy and reconstruction.  Now I must deal with the other risk factor that BRCA 1 carries.  I must face the fact that I have a super high risk of ovarian cancer.  And not only that I have a risk but there really isn’t any great system for monitoring ovarian cancer at this time.   Most ovarian cancer is caught late and the risk is just too great for me.  How incredibly sad would it be for me to do all the work I have to rid myself of breast cancer but be too scared to get my oopherectomy and then die from that.  I could never forgive myself.  So…April 1st…I have an appointment with my fabulous GYN to discuss my options.  I have researched hormone replacement and yet I still feel a bit confused.  I’m 36 and still have some time until menopause.  I’m scared of my body getting out of control.  I’m scared of gaining weight.  I’m scared of my eyesight getting worse.  I’m scared of my libido drying up.  I’m scared of feeling old and looking old.  Thankfully I’ve gotten over the fear of what it will cost because it always costs lots and I just pay it off as I can.  I do not fear recovery because heaven knows I’ve recovered from worse and I have an amazing village on my side.   Time to step up and get this done!


  6. Final Revision

    December 4, 2013 by Julie Moon

    I kept meaning to post about my upcoming revision surgery and it all happened quite fast so here I am on the other side posting now.  I found out that we had met our annual deductible for insurance and so I called Dr. Craigie’s office to see if we could quickly fit in a surgery before the end of November.  I really wanted to see if we could do anything to create a nipple for the left breast.  That nipple had not survived the first surgery and I really wanted something there to match the sides.  I also wanted to see if he could do anything to help with the fullness I was missing on the right breast.  I knew that this surgery was all about me feeling complete and completely put back together.  I traveled to Charleston to see him on the 18th….there and back in one day is an all day adventure but I had to see him this day.  We came up with a plan.  My mom and I drove back to Charleston on the 25th, spent the night and got ready for an early surgery on the 26th.

    What Dr. Craigie did was take a cone shaped graft of my right nipple and grafted that onto my left breast.  Blows my mind to think about how this could even work but it did.  He also harvested fat from my legs via liposuction to inject into my right breast.  This was challenging because I’ve been so diligently working out for the past year and so he had to harvest from 6 spots.

    I stayed overnight in the hospital and was discharged on the 27th (the day before Thanksgiving) with a compression garment that goes from my ribs to my mid shins.  I had no drains and only one dressing over the grafted nipple that they actually stitched down in 4 places so it wouldn’t move at all.  I also had a nipple shield that I have to wear to just keep any compression off the breast.

    Overall I’m doing well.  My legs are terribly bruised and very very sore.  I’m missing being able to workout and take my weekly trapeze class but I am beyond thrilled with the results of the surgery.  If you can handle the surgery the revisions are really so amazing and have done wonders.  I can honestly say that without the revision surgeries I think I would be really struggling more with my decision to do this.  I took some pictures of the bruising last night for those who might need to do lipo…it is painful.  But, I am so happy to know that everything in my chest is 100% “julie”…and not man made.  I’m like a transformer…just move my parts around to create a new look. HA!

     


  7. Family Tree

    September 19, 2013 by Julie Moon

    tree

    It has never occurred to me to consider finding out about my BRCA status and then keep it to myself.  I suppose I’m a pretty open person.  My children were 9,7 and 3 when I had my sugery.  I couldn’t really hide that from them.  It was pretty obvious and significantly affected their lives.  But what if they were grown and out of my house?  What if I had the test and didn’t share that info with them?  What if I knew I was BRCA positive but didn’t want anyone to know?

    My oldest has asked me more than once “What if I have the gene, Mom?” and boy does that just force me to take a deep breath.  I reassure her that it’s not anything to concern herself with now and that when the time comes I will support her in finding out and I am confident that the technology will be completely different for her.  But there is no way that if she were a grown woman now I would not share this info with her.

    I fully support people dealing with things differently than I have…but I would want them to have all the information they needed to make an informed decision.


  8. Be Kind

    July 15, 2013 by Julie Moon

    joesflowers

    Today I went into TJ’s to do my regular grocery shopping.  My eyes were sore from crying.  I lost my father in law just 5 days ago and today was a particularly tough day.  I did my shopping and got several glances…it was obvious I had been upset.  I went to the checkout and two people were there to greet me.  A young woman bagging the groceries and an older gentleman ringing them up.  They asked me “How was your weekend?” and I couldn’t hide my sadness.  I just shook my head and my eyes welled up with tears.  The girl said “Are you ok?” and really looked genuinely concerned.  I replied “No, my father in law died this week and it’s been particularly hard.”  I started to cry.  The girl apologized and then walked away.  She returned a few minutes later with a beautiful bouquet of flowers and said “I’m sure these will make you cry more…we are sorry for your loss.”  I continued to cry through the rest of the checkout process.  It was a small, simple gesture that truly meant so much.  I am sure this is something passed down from those much higher…what a wonderful thing they are passing on to their employees and enabling them to do something more for customers than I ever would expect.  Those flowers sit now on my dining room table reminding me to be compassionate and kind and to do for others when I can.  Thank you Trader Joe’s.

    Let’s be kind to one another.  You never know what others are going through.


  9. Oh What a Jolie Morning!

    May 15, 2013 by Julie Moon

    jolie

     

    Today I can barely contain the thoughts in my brain.  Today Angelina Jolie, age 37,  announced to the world that she tested positive for the BRCA 1 mutation and had a prophylactic bilateral mastecomy and reconstruction.  Today Angelina Jolie shared something so vulnerable and still so controversial.  She told her children she was willing to do whatever she could to ensure that they don’t lose their mother too early like she did.  Today I gained so much respect for Brad Pitt and his supporting her through this.  It is no easy feat to watch someone you love make a decision that can be so deeply emotional and life changing.   I’ve been linked to her news more than a dozen times by friends.  My friends know my story but soooo many do not.  So many do not know what technology and research has made available.

    I replied on a facebook page with a link to my story and some of the comments were so interesting.  Someone posted this comment “It’s a very brave thing what she’s doing and her message! But logically this woman is loaded she can do anything she wants whenever she wants to! How are real normal woman going to afford having this done? Awareness or not its just completely unrealistic! Breast cancer runs high in my family but life would never give me the chance to escape the inevitable!

    My heart broke as I read this comment.  She might have no idea that health insurance has begun to pay for these procedures just in the last 10 years.  It is definitely still a concern that not all women have affordable health insurance.  This is an issue that touches so many more things than just breast cancer.  I think it’s just amazing that this is even an option now.  Before the mid 90s a woman who chose mastectomy didn’t have any option but to pay for a reconstruction out of her own pocket.   We are definitely moving in the right direction.

    The inevitable is that we all will die…it hopefully doesn’t have to be Angelina Jolie is 56 from breast cancer like her mother.   Yes, most breast cancer IS NOT genetic.  But man oh man if this testing and surgery allows me to see my grandchildren someday…all worth it.

    I needed this today in such a bad way.  I have been feeling so negative about my situation.  I’m still pissed off about that nipple but man…this is HUGE.  Angelina Jolie knows that this is going to come with lots of outsider opinions and comments but she decided she was going to SAY IT ANYWAY!

    Angelina’s op-ed article in the NY Times


  10. Distance

    March 28, 2013 by Julie Moon

    2012-02-08 14.23.03

     

    I am finding lately that I feel the need to distance myself from all things BRCA related.  It’s a very strange feeling.  I haven’t really been able to open up the facebook group to read posts and I haven’t been to the FORCE page at all. I know I could be helping others.  One of my newest BRCA friends has asked me to make a video and I just can’t bring myself to do it.  I am grateful…so grateful.   But every single day it is so very hard to look at my body.  It is so very hard to see those bright red scars.   It is so very hard to look at my left breast lacking a nipple and my right breast lacking volume.  I see every flaw in a way I don’t think I did before surgery.  Today I had to change the side of my body I wear my purse on because I have a spot on my back thigh that is sore all the time and the purse hitting against it finally became too much.  I look at these things and I realize so clearly that I had the opportunity to count the cost before I took the plunge.   If I had been diagnosed with breast cancer I would not have had that luxury.  But then sometimes it’s so painful that I CHOSE this.   It gets too raw and I have to distance myself from all of it just to make it through the day.  It is ALWAYS on my mind….EVERY SINGLE DAY.  It’s like background noise just humming in my brain.  I hope this is just a phase.

    And then today a friend posted on facebook about having to go back for a second screening after an ultrasound and I remember that feeling so vividly.  I am grateful for what I chose but good grief this isn’t easy.