October 27, 2022 by Julie Moon
Today, I am 20 days away from my 45th birthday. Tomorrow, I will go in for a robot-assisted total laparoscopic hysterectomy with bilateral salpingo-oophorectomy. This is hopefully the final surgery in a long list of preventative steps I have taken as a result of my BRCA 1 status. Research suggests that BRCA 1 patients have a high risk of ovarian cancer and perhaps also uterine cancer.
As far as we know…nothing is wrong. I had my regular CA 125 blood work done and regular ultrasound that I do annually or biannually. Things looked pretty normal but the CA 125 levels were a little high but still in the normal range. Stephanie Allen, my gynecologist, and friend called me to say, “Please go see this gynecological oncologist and get his opinion.” So I did. And Dr. Wilson was pretty adamant that it was time. We spent a good long while talking through things and decided we would go ahead and schedule surgery.
I have dreaded this one the most. I have lots of questions about how this one changes my body and life in general. What will menopause feel like? Will I gain weight? What hormonal changes will come? Should I do hormone replacement? What are the risk and benefits of that? How long will it take to recover? How long until I can lift weights again? Will losing my uterus cause all kinds of problems? So many questions.
What I DO know…is this. I have a great team of doctors who I have consulted….again and again. Those great doctors have shared medical journals, notes, research, and more with me and have let me lead this step when I felt fully ready. I have a great support team. My wonderful husband and my mom will take great care of me physically. I have a pelvic floor therapist I have already spoken to that I will be meeting with post-surgery. My trainer at the gym is on board with modifying my workouts throughout my recovery. I am so grateful!
It’s interesting to me that this surgery would be harder mentally than my breast surgery and reconstruction. That was WAY harder physically but somehow I was brave enough to take that step. So I know that I am brave enough to take this step.
I think there is a bit of sentimentality kicking in this time. This precious body I was given has carried three babies. I am forever grateful to this body and all the ways it has nourished life. My mom even called me today to make sure I was doing ok emotionally with it all. I’m known to compartmentalize my emotions and not really connect with them sometimes. It’s ok…I have a couple of good “feelers” as family and friends who help me remember that this is a big deal.
Category Uncategorized | Tags: BRCA,decisions,emotions,family,ovarian cancer,recovery,Surgery,uterine cancer | 11 Comments
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!
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
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
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.
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
March 28, 2014 by Julie Moon
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!
Category Uncategorized | Tags: BRCA,decisions,emotions,oopherectomy,plans,Surgery | 2 Comments
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
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
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
December 12, 2012 by Julie Moon
Today marks two weeks post surgery. This was my third major surgery for 2012. My mom jokingly calls this one my barbie surgery because this was the one where we fixed all the scars, cavernous hips missing large amounts of tissue and recreated a nipple (sort of…it’s nothing special). I traveled to Charleston on the 26th with my mom. She’s been so amazing this year for me. She’s been through the toughest parts. She has been the one to see me hurting the most and she’s been the one to receive the most complaints and general recovering Julieisms.
We stayed with our friends again who we lived with for a week and a half after my first surgery. It was so great to catch up. I stayed at their house so long before it felt like coming home in a way to visit them and sleep in “my old bed”. We got up way early for surgery and like a doofus I took my antibiotics (on an empty pre surgery stomach). I do this every time because they tell you to start them the day before and I’m such a darn rule follower that I took it that morning. Nevermind that they were already going to give it to me in my IV at the hospital. So I eventually threw it up in the preop waiting area. Oh well…maybe someday I’ll learn or remember. I brought my beautiful quilt with me again as I waited. Every staff member was wonderful, my doc, nurses, anesthesiology staff…they were all so great. I don’t remember now how long surgery was…but I was out sometime after lunch. So maybe 5 hours? We stayed at East Cooper overnight so I could sleep on the air bed. I was so grateful to not have to wake up and get up and get out of the hospital right after surgery. That was such a pain the last time. I have lots of blood pressure issues when standing up for days after surgery. Then we came home to Athens and my mom came with me too.
I came home with two drains and a compression garment from my knees to my ribs. Joe lent me a laptop to so I could get cozy in the recliner while keeping up with the world and my friends. It’s all a bit of a blur now. Heck, life feels like that when I’m not on pain meds or recovering from surgery. Mom helped me wrap Christmas presents. I tried to get most of my shopping done early so that I wouldn’t feel stressed about getting Christmas ready for three small children.
My friends brought meals again…I feel like I owe them all a night out. In fact I get emotional every time I think about the people who have served me this year. Near and far I have felt so much love and support it is just more than my heart can hold and my heart bursts out through my tears every single time. I truly know who my friends are this year. I truly know that my family loves me dearly. I know without a shadow of a doubt that this village I am a part of is good to it’s core and without them I would be lost.
This past weekend the Mister had some work to do in Charleston so we planned weekend sleepovers for the bigs and Joe, Scarlett and I traveled to Charleston together. Scarlett and I hung out in the hotel and she enjoyed jumping on the bed, watching tv in bed and buffet breakfast. It was quite a treat to spend time with just one child…but I definitely missed my big kids so much. We saw Dr. Craigie on Monday and he pulled both my drains! Thank the Lord! He said I should wear my compression for another couple weeks.
Though I still have lots of visible scars I feel like my body looks more like normal than it has in a year. I feel close to whole.
Tonight at dinner Savannah asked me “So which one of us kids do you think has the gene?” *sigh* I told her “I hope none of you sweetheart.” She’s thinking lots about it I know. It’s deep in that brain of hers that goes a million miles a minute. I know my children won’t fully GET what I have done until they have a friend whose mother gets breast cancer, goes through chemo and heave forbid dies. They are too young to have SEEN that yet in life. But I hope they understand what this year of sacrifice has meant for them. Scarlett said “Mommy I wish you weren’t sick.” and I know that I”m not “sick”. I know that I’ve done this so I won’t ever have to be “sick” from breast cancer…like so many others in my family.
I’m so excited about 2013 for them. I’m so excited about a mom who isn’t traveling out of town for surgeries. I’m so excited about a mom who doens’t have wounds and can get in the pool. I’m so excited about a mom who feels great and can really enjoy the year with them. My children and my husband have been strong troopers. My husband…no words for the love and support he has given me through this decision and my journey.
Whew…what a year. My journey isn’t over. There are still some more surgeries in my future regarding ovaries. I still have some decisions to make but overall…this was the biggest mountain and I’m on the other side. I didn’t climb the mountain alone and sometimes I was carried but we made it over the mountain. God is good!
Category The Journey | Tags: blessings,BRCA,breast cancer,charleston,decisions,drains,emotions,family,friends,God,mister,plastic surgeon,scar,Surgery,travel | No Comments
October 25, 2012 by Julie Moon
Sometimes I feel so alone in this journey. I “know” lots of women online who are BRCA + and of course I have my mother. But just like anything in life…it means so much to have a friend going through the same things as you. I mean I pray all the time that none of my friends will ever have this mutation. I desperately pray that none of my friends will get breast cancer. But it’s hard to not have a friend who really understands what it’s like to be dealing with losing your breasts and ovaries at 34…or even the decisions to choose to lose them. I do have one friend who has tested positive but she’s not quite there…not quite ready to deal with it all. I totally respect that.
Please don’t judge me for what I’m about to say and most of you won’t have any clue what I mean but I need to get it out there. It’s hard to not be a survivor. At the 3 day this past weekend the survivors are brought in at the end. They are honored for their courage and their victories. They ARE brave and they HAVE had great victories…I don’t deny that one bit. I have never once been afraid for my life. I have never had to tell my children I have cancer. I have never had to suffer through chemotherapy or radiation. But I stood in the corner, in the back…feeling a sisterhood to the women in pink but still so alone.
Category The Journey | Tags: 3day,BRCA,breast cancer,emotions,Surgery | 1 Comment