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!
Posts Tagged ‘decisions’
March 28, 2014 by Julie Moon
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!
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.
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.
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.
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!
October 3, 2012 by Julie Moon
I got married 13 years ago. This was before people had cell phones, digital cameras and blogs. We barely had the internet back then. Weddings didn’t seem nearly as creative as they are now. If you hadn’t seen it before and you weren’t one of those super creative types you had a typical wedding. Which is awesome…but let’s face it, not quite as cool as some of the weddings happening today. It’s easy to get caught up in Pinterest and see beautiful weddings with creative ideas and wish you had “done that” for your wedding. I get a feeling of dissatisfaction about my wedding…I don’t like it. I usually promptly close Pinterest and the feelings go away.
I have been having those same feelings about my reconstruction. Technology and medicine never stops. It is inevitable that breast reconstruction is only going to get better and better. The choices available are going to blow my mind. I know my mom has some of these feelings about her own reconstruction. She had her surgery four years before my own and it has amazed us what was available to me that wasn’t quite as well known and/or available to her. But I have to quiet that voice in my head that wonders if I should have chosen a different type of reconstruction. I am happy with my reconstruction but I do have things that are still not quite right. I know I have another surgery in November but I wonder if I will still have some of these feelings after that surgery too. I want to help others but I think that there might come a point where I just have to quit looking things up and researching and being involved with the previvor forums for fear that my involvement will keep me from being satisfied with where I am. I will never stop being an advocate for breast health, breast cancer research and breast reconstruction. I do have two daughters…they may very well have the BRCA gene mutation. My efforts to find a cure are for them as much as they are for me.
August 21, 2012 by Julie Moon
This is how I feel tonight.
I had a great drive to and from Charleston today with my sweet husband. We left early at 8 am and returned around 8:30 pm tonight. It was so great to spend that time alone with him. When you have three children you just don’t get that much undivided attention from your spouse. We had a great spiritual discussion, laughed and I felt really loved by him. I’m so grateful he is so supportive of this journey. I couldn’t imagine trying to convince him that driving to Charleston for a surgery was/is the best plan for me if he wasn’t on board with the plan.
Everything is looking good and healing well and softening as it should. Dr. Craigie seemed pleased with how things looked and said I was ready to finish up. We planned a surgery date for November 27th. The kids will be back in school so it should be a little more manageable than my summer surgery date was. We will finish my nipple reconstruction on the left side, fill up one part of the right breast that needs some fullness and then he will do a revision of the donor site. That revision means they will open up the scar and take some fat from below the scar and fat from above the scar and fill in the concave area. It will hopefully help things to be more proportional. For those who don’t know the scar on my backside goes basically from hip to hip in a V. This should be the final surgery I need. It’s inpatient for one night only because they like for me to sleep on that special air filled bed for one night after surgery. We asked if they could give us a special spa room since our deductible for the year has been “met” (though we are still slowly paying it to everyone). They just laughed.
It was interesting today. Dr. Craigie is a laid back guy. I love that about him but today it made me a little insecure to tell him all that I wanted “fixed”. I think what I realized is that maybe he is used to dealing with “sick” people who are really not interested in more surgery to get themselves back to normal. They are more focused on survival…which I get. I wanted him to sell himself a bit more I suppose but overall I know that he will really do a great job. I do miss Christina…the PA I had for the first stage. She moved to another state to follow her husband to a new job. I could sure use a chat with her tonight. She was such an encourager.
August 20, 2012 by Julie Moon
It’s been a long time since I posted. Life has been busy. The kids are all back in school and we are back in our routine. Tomorrow the mister and I are headed to Charleston to meet with Dr. Craigie. I wanted to see him in person now that I am all healed up from stage 2. I plan to discuss our plan for finishing my nipple reconstruction as well as what he might be able to offer in regards to modifying the donor site. My back side has some very large concave areas (obviously) and hopefully they are able to do a lift to fill in that area some and make it not so obvious I had tissue removed. I have no idea what we will actually come away with tomorrow in regards to a plan. I am looking forward to it though. It brings me lots of peace to be able to see Dr. Craigie and know that I am making progress.
I feel really normal most days. I did yard work yesterday…lots of digging which I couldn’t have done a few months ago. I’m working again and that makes me very happy.
I wish I could stay in Charleston for more than a couple hours tomorrow…that place holds such a sacred place in my heart. I think I need an I “heart” Charleston teeshirt..hee hee!
July 11, 2012 by Julie Moon
I have been shopping and shopping lately….for what you say? Swimsuits. This has been the most confusing year ever for me. Not only do I have completely different size and shape breasts but my backside is shaped all differently around my hips. I have been totally lost when I’m shopping. I feel like I am shopping for the first time. I ended up buying TONS of stuff online and then taking back what didn’t fit. Lands End has been my hero. I also have a great friend who brought over piles of her swimsuits and let me try them on and she even let me borrow a suit for our vacation. There is nothing quite like feeling good in a swimsuit. I was so grateful to get to that point in my recovery. I’m still not done and I have some things I dislike or need fixed on both breasts still….but I think I totally rocked the swimsuit at the beach. I guarantee there wasn’t a person there who could tell the difference. To all my fellow BRCA sisters…you’re going to look HOT when you get those darn drains out and get all those holes healed up…it really does happen!
The summer has been so busy with things going on for the kids and vacation that I haven’t really thought about what lies ahead for me and my body. I got a card today in the mail that I need to schedule a follow up with my breast surgeon. I will probably plan a day trip to Charleston once the kids are in school again to see Dr. Baron and Dr. Craigie. It’s almost time to map out my next steps whether they are this year or later.