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
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
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
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 17, 2012 by Julie Moon
Today I received a message from a friend:
After reading your blog during your surgeries I showed it to a good friend of mine (they have lost 7 women in the family to breast cancer and she is currently fighting it for a second time!). Her younger sisters are now all getting tested for the gene due to your article! (Apparently their doctors had not brought it up to them yet at that time.)
And that folks…is why I am writing my story.
I’m feeling all warm and fuzzy about the internet, technology and being able to spread the word.
Category The Journey | Tags: blog,BRCA,breast cancer,family | No Comments
June 10, 2012 by Julie Moon
These days I feel like I’m on a roller coaster. One minute I’m ecstatic about how things are going and then the next minute I’m feeling like I’m never going to be finished and whole. I remember my mom talking like this. I remember her feeling like she was never going to feel great again. She is not without complications even 4 years later but she is in a much better place.
Last night as I pulled off a piece of tape that has been over the incision on my right breast (all my wounds were sewn up with something that looks and feels like fishing line and then taped over with something I think looks like sheetrock tape) I was amazed. My right breast looks so very normal. So much like the me from before surgery. I have a 4.5 inch incision on that breast but other than that I’m feeling so happy with the results. The scars will fade and it will be great. Times of rejoicing.
Then I pulled off my no stick gauze from the left breast that is looking so rough. It’s hard to even imagine it looking normal again. Lots of incisions and a bleb of a “nipple” they are working at creating and the incisions aren’t even closed tight. Feeling like my insides are exposed and I’ll be eternally doing wound care. Times of mourning.
We attempted a nipple sparing mastectomy for both sides. The nipple has to receive adequate blood flow to survive and Leftie Loser did not. She bit the dust early and now we have to replace her. It makes me sad to see how great the right side looks and know what I would look like right now if that nipple on the left had survived. Makes me well up with tears right here right now.
But then I remind myself that I did not go through all of this just to have two fuller, more youthful breasts that look perfect. I went through this to make sure I’m around to see this little bit grow her own breasts and make a life for herself. I went through this to live a long life and I can live a very long life with one beautiful breast and one ok breast…neither of them are going to kill me. And THAT my friends is what matters!
Category The Journey | Tags: baby girl,BRCA,breast cancer,emotions,family,nipple,recovery,sad,scar | No Comments
June 9, 2012 by Julie Moon
I’m happy to be nearing another weekend and getting closer to being 3 weeks post surgery. I think at 3 weeks I can stop wearing these horrid compression garments. I’m hoping that I can start getting 1/2 of me in the pool (if the water in Georgia will ever warm up). I’m feeling more like myself and I’m going to start working again next week.
I’m driving…but it does make me very sore.
My house ends up looking like this more often than not…which I’m slowly getting used to. Remember I’m an organizer by profession.
Though I am feeling better there is lots going on in my family. Stuff with my father in laws health and also with my future brother in law and my mom. I’m ready for the universe to give us all just a couple months off from all of it. Somehow I don’t think that’s the direction we’re headed.
As far as my recovery…things are looking on. My left breast is not pretty but not infected and supposedly healing…though I’m skeptical that everything is going exactly right. I gotta keep it bandaged and keep an eye on things. Also…you’d be amazed how many times your children bang into your chest on a daily basis…trust me…it’s lots. ouch.
Category The Journey | Tags: BRCA,breast cancer,family,pain,recovery,scar,waiting,work,wound | No Comments
May 4, 2012 by Julie Moon
Today I spent the morning at the hospital with my family. My future brother in law was just diagnosed with testicular and renal cancer. When I got the news from my sister I felt like someone punched me in the stomach. This is my baby sister and her sweetheart. How in the world could this be happening while they are falling in love and planning their wedding. Just took the wind right out of me. I feel sad and angry and a bit overwhelmed by it all. ENOUGH WITH THE FREAKING CANCER!!!! He had an orchiectomy surgery and we await the pathology from that surgery and then he will have his kidney biopsied next week. I’m so grateful he is on the journey to taking care of all of this but goodness it is so intense. It makes my heart break because he is such an amazing guy and I’m so grateful my sister has found him.
But back to perspective. As we were sitting in the waiting room I was surrounded by family and friends who have all had intense things in their lives. Each of their stories is quite overwhelming honestly. But there we all were…sitting there, survivors each in our own way. I am grateful. I am humbled by the whisper that is our life in this large world. Our lives are a mist. Be grateful….be still…be intentional. Soak it all up because in an instant…we are dust.
Category The Journey | Tags: biopsy,cancer,family,Surgery,waiting | No Comments
March 5, 2012 by Julie Moon
I spent a weekend in October in Atlanta in a sea of pink. I was working on the crew at the Atlanta Susan G Komen 3 day For The Cure. I worked on the crew which means I was one of the 425 who supported 2400 walkers in walking 60 miles in 3 days to raise money to find an cure for breast cancer.
I carry the BRCA 1 gene mutation. My mother is a breast cancer survivor and carries the BRCA 1 gene mutation. My grandmother was a double breast cancer survivor. My aunt died of complications from her breast cancer therapy. It is an event that means a great deal to me and my entire family.
It was an amazing event and I’m so grateful that I was able to participate. I have already signed up to be on the crew in Atlanta in 2012 along with my mother, her best friend, my brother,his wife, my sister, her fiance, my best friend and a friend I made at the 2011 3day. I plan on walking my first event in 2013 with my husband. The 2011 Atlanta 3day event raised 6.5 million dollars for breast cancer research. I stood in awe at the closing ceremony looking around at all the other people who had worked/walked that weekend to support something that affects me so deeply. Several of you donated to support my efforts. For that I am beyond grateful.
I’d love your support for 2012! Will you help me reach my goal of $500?
Category The Journey | Tags: 3day,BRCA,breast cancer,crew,family,friends,walking | No Comments