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
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
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:
Category The Journey | Tags: fallopian tubes,oopherectomy,ovarian cancer,salpingectomy,Surgery | No Comments
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
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 | No Comments
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
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
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 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