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April 11, 2017 by Julie Moon
I received an email last week. It’s really amazing to me how important the work of sharing your story is to people. This email really makes me so very happy. Just an email from a mutual friend who wanted to tell me about her journey. Yes, I have written this blog for my daughters…but I also write it for every woman who just needs some answers. Peace to you all!
“Hi Julie,
Thanks to your mom sharing her experience with me and letting me know about your website, I am scheduled for surgery with Dr. Craigie on July 19th.
I really didn’t think I wanted to do reconstructive surgery. A double mastectomy and 4 rounds of chemo took a toll on me back in 2014. But after meeting with Dr. Craigie in November of last year, I knew I had found the right surgeon . I felt at peace after my husband and I talked extensively with him about the different reconstructive options available through his practice.
I just wanted to let you know how grateful I am for your openness about your journey.”
Category The Journey, Uncategorized | Tags: blessings,BRCA,breast cancer,charleston,decisions,friends,Surgery | No Comments
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February 1, 2017 by Julie Moon
Today marks five years since my surgery. I jokingly called it my boobiversary yesterday. But it’s truly the anniversary of a bold decision. Five years free of worry, stress, concern and cancer. Honestly when I step back and think about it…that time of my life feels surreal. I hardly remember what it was like. I have flashes of my recliner I recovered in. I remember outfits that I wore that would conform to having drains. I had drains…oh my…I do remember that. I remember my mom showering me. I barely remember my children during that time. Every time I get ready to get in the shower though…I remember. There are some serious scars on my body. I have to constantly remind myself that the scars are worth it. And this year…it hasn’t been hard. Two of my friends have been diagnosed with breast cancer this year. I have to remind myself to thank myself….to thank science…to thank my brave surgeons…to thank my incredibly supportive husband. I’m so grateful for all of the pictures that pop up on facebook memories this time of year. One of the biggest things I learned through this experience is the importance of your village. There are dozens of men and women who stepped up to help my family during that time. It literally brings me to tears to even mention it because it wouldn’t have mattered how bold or gutsy or whatever I was…if I had not the support of my community I could NOT have gone through with my procedure. The quilt my friends all put together for me to take was literally one of the best gifts I have ever received. The bins outside my door that people just came and filled up with food FOR A MONTH. Friends who took my children so that I could rest….know that I think of this every time I see you. The Bozards who let me live at their home, aka paradise, for two weeks! Two weeks they fed me, loved on me and my mom and let me overtake half their house while recovering from a seriously major operation. And my mom…without her this would not have been possible. I am forever grateful. Forever. What a journey we are all on. To my friends and family…I love you. Thank you.
Category The Journey | Tags: blessings,BRCA,breast cancer,charleston,decisions,emotions,family,friends,recovery,waiting | 3 Comments
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November 10, 2015 by Julie Moon
I often have random strangers email me to ask about my experiences. It always makes me happy to be able to share my life with them. To help them through some decision making and to clarify what exactly did I have done? I had an opportunity recently and shared my experiences with one woman. She wrote me back last week and it truly made my day. Here is her email:
It’s M. I spoke to you a month or so ago about your experiences with Drs. Baron & Craigie. I’ve been down to Charleston several times and plan to have a single mastectomy with GAP reconstruction using Baron & Kline. (Kline had office hours the day I met with Baron so he’ll be the leading plastic surgeon and Craigie will be assisting.)
I thought I was mainly going because of the plastic surgery option offered there, but then came to discover how warm and capable Baron is. So now I have the utmost confidence in the entire team. When Baron asked how I came to find out about him, and I mentioned your name, he said “Oh yea yea, the BRCA gene woman”. So he does remember you.
I just wanted you to know how thankful I am for both your blog and your willingness to chat with me about your surgery. I was desperately looking for a reconstruction option that better suited me. When I did a Google search on “GAP flap reconstruction atlanta”, your blog appeared. Otherwise the options in Atlanta are non-existent. I genuinely believe God lead me to you. Your blog matters so thank you for continuing to keep it out there.
I’m naturally a little anxious about the whole process but it still feels like the right choice for me.
Thank you more than you know.
M
THIS IS WHY I AM OPEN ABOUT MY STORY! This is not the first, second or even third woman I have spoken to personally about my experience. This is how sharing your life can change other’s lives.
Category The Journey | Tags: blogging,BRCA,charleston,decisions,friends | No Comments
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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.
Category The Journey | Tags: decisions,fallopian tubes,medicine,oopherectomy,pain,recovery,salpingectomy,surgeon,Surgery | 3 Comments
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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
Category The Journey | Tags: fallopian tubes,oopherectomy,ovarian cancer,salpingectomy,Surgery | No Comments
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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!
Category The Journey | Tags: breast cancer,charleston,decisions,nipple,pain,recovery,scar,surgeon,Surgery,travel | 4 Comments
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September 19, 2013 by Julie Moon
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.
Category The Journey | Tags: BRCA,children,family,genetics | No Comments
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July 15, 2013 by Julie Moon
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.
Category The Journey | Tags: blessings,family,loss,sadness | 1 Comment
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May 15, 2013 by Julie Moon
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
Category The Journey | Tags: angelina jolie,BRCA,celebrity,Surgery,writing | No Comments
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March 28, 2013 by Julie Moon
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.
Category The Journey | Tags: BRCA,breast cancer,decisions,emotions,nerves,pain,recovery,scar | 1 Comment
