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
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
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
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
February 1, 2013 by Julie Moon
I have recently made a commitment to myself to get strong in 2013. 2012 was a year for mental strength…strength of heart and soul…but my body is weak. I am whole, put back together but I have been sedentary and I can definitely tell. I have started working with a personal trainer and plan to change the composition of this body in 2013. I want to work on my posture as well as all the squishy parts of me. I’m excited about the changes I am making but I do realize it’s going to be much harder than any surgery I have had. It’s a lifestyle change and it takes time and discipline. I had my daughter take some before shots for me to remind me what I’m working towards and to document the changes that I am able to see in my body. Here’s to a redefined body!
After slipping on my swimsuit I realized something very disappointing. My hip incisions are very visible in this swimsuit. And it’s not a skimpy suit at all. My heart really sank. I don’t know why I was surprised. I can see the scars above the waistline on my jeans some days. *deep breaths* This is all worth it. They are merely scars of what a brave woman you are. They are not scary or ugly. You are going to be swimming at the pool wtih your children and not suffering from breast cancer. I’m gonna need a couple mantras to keep me going this summer. It’s like you think it’s behind you and you’re past all the hard stuff and then *WHAM*….something else hits you in the face like this.
Category The Journey | Tags: body image,breast cancer,clothes,decisions,emotions,exercise,scar,swimsuit | 2 Comments
January 16, 2013 by Julie Moon
No woman is really symmetrical. We all know this. But it’s something I believe we all desire. It’s incredibly frustrating to try to shop for a bra when you’re not. I was not symmetrical before surgery. I thought given that we were starting from nothing that I would likely be symmetrical this time. I am not…and even more so than before surgery. I’m trying hard to not be critical of myself and what I have post surgery. I’m considering some different options. Praying for some clarity and peace.
Category The Journey | Tags: breast reconstruction,decisions,emotions,nipple,planning,Surgery,symmetry,waiting | No Comments
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 26, 2012 by Julie Moon
One of the things that the 3day taught me this year is that everyone has a story. Yes, all the stories at the 3day were about breast cancer…stories of loss, survival and everything in between. Some stories were shocking, others were sad and still others were inspirational. What I realized is that we ALL have a story to tell. In fact, we all have many stories to tell. Every one of us has gone through something that has changed us, broken us, helped us grow, changed our future, opened doors, softened our hearts or hardened them. Sometimes we get so caught up in our own stories that we fail to notice that everyone has something to share.
At the beginning of the 3day they ask us to make a promise. The promise I made this year was to not make the event be all about ME. In the past year I added an additional chapter to my life story. It’s quite a dramatic story…not too sad but kind of intense. People need to hear my story but sometimes they don’t need to hear it more than they need to share theirs.
I want to share my story because I am proud of it. But more importantly I want to share my story because I think it will save other people’s lives. I don’t know that I’ll ever know if my story in fact saved someone’s life as I still don’t have the ability to tell the future. I do know that for the possibility of that happening though…it’s worth any criticism I get about speaking out. It’s worth any amount of strange comments from people trying to relate to my situation. I also have many other stories to be shared…some are happy and some are sad.
And for every person I encounter there is something that has changed them…deeply. That funny, sweet fella with glasses….he lost the love of his life and their future just as they were starting their story. That compassionate, selfless family who is always willing to lend a hand…they had a daughter born needing a new heart and even that wasn’t enough to keep her around. That sarcastic, confident woman who’s always online…she’s grown into an amazing woman despite the crappy men who have tried to keep her down and she’s raising a pretty awesome son too despite what a tough life she’s had. That beautiful, athletic woman you see running your neighborhood…she almost lost her son in a car crash and he’s still struggling to get back to ‘normal’. Are you taking the time to know their stories or are you too busy comparing yourself to them on the outside, being critical or just talking about yourself?
You might know their story…but you might not.
Take the time to be a listener…and if you’re brave enough…take the time to tell your own stories.
Category The Journey | Tags: 3day,emotions,life,promises,sharing,stories | 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
October 24, 2012 by Julie Moon
Pit 4 Crew 2012
I call this day “decompression day”. I spent the weekend in Atlanta at the Komen 3 day walk. I crewed again but it was an entirely different experience this year. This year I was with my mom, my brother and his wife, my sister and her fiance, my best friend and my “big brother” who crewed our team last year. We all signed up to be on the same pit crew this year. I had no idea if that would be a good idea or a bad idea. Close quarters and family for three days straight is sometimes dangerous. This was the first time for most of them at the 3 day event. I was excited to see how this event would affect them given that it changed my life last year.
Like I said, last year was life changing. We like to call it “The Great Awakening“. I came home from that event, planned my surgery and said goodbye to my breasts. I also said goodbye to the fear, anxiety, risk and more MRI’s and mammograms than anyone should ever have to experience. I became a Previvor. I became a previvor for myself, for my loving husband, for my amazing parents and siblings, for my darling children, for my devoted friends and for those who need someone to blaze a trail ahead of them.
I felt so much emotion last year about making a decision to be proactive. I was moved deep in my heart to act. This year I came to event with my own story. I feel like I had more to give this year. This event this year was about gratitude. Without research and the discovery of the BRCA gene where would I be? I feel so grateful to have been born when I was, to live where I do, to have the technology available to me, to have the learned what I have learned at this point in my life. Others have not been so lucky. It felt so big picture this year. I want to appreciate every moment and take from it everything that I possibly can. I want to live a life of purpose. I want to be intentional. I want to be a teacher. I want to be an example.
Thank you 3 Day family for what you are and what I have learned from you. Thank you for raising $4.2 million this weekend to find a cure.
I have so much more in my heart to write…it’s still in translation mode…working it’s way from my heart into words. Stay tuned.
Category The Journey | Tags: 3day,blessings,BRCA,breast cancer,emotions | No Comments