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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
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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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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.
Category Uncategorized | Tags: | 1 Comment
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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.
Category Uncategorized | Tags: hormones,nerves,oopherectomy,ovaries,recovery,surgeon,Surgery | No Comments
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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
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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
