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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
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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
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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
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October 3, 2012 by Julie Moon
I have some of the same feelings about my breast reconstruction that I have about my wedding. Let me explain.
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.
Category The Journey | Tags: BRCA,breast cancer,decisions,emotions,fear,medicine,planning,plans,plastic surgeon,surgeon,Surgery,waiting | 2 Comments
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October 1, 2012 by Julie Moon
I found this quote this morning…good stuff.
It is not the strongest of the species that survives. It is the one that is the most adaptable to change. – Charles Darwin
Category The Journey | Tags: BRCA,breast cancer,change,darwin | No Comments
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September 25, 2012 by Julie Moon
“How are you doing?” “How are things going?” “How are you feeling?” “How do things look?”
These are questions I get all the time. I understand…people want to know. How else are they going to ask me? How else will they know what is going on? I don’t know how to reply though. I have been saying “I’m doing well.” “Things are feeling more normal.” “I’m back to work and not having any difficulties.” But the other day I really sat quietly, meditating on how I’m really doing. And the truth wasn’t quite as pretty.
I realized that I have daily discomforts that I wouldn’t quite call pain, but they are annoying and disruptive. My donor incision and above has a constant heat…not really to the touch…but it feels much like your body feels with some Ben Gay rubbed on your skin. A slight burn. I have lots of “zaps” in my breasts. I have sore spots on my breasts still…that feel like bruising, especially when I am not wearing any bra. Physically things are doing great but then again they are so hard still. I still forget sometimes that I only have one nipple. Sometimes when I’m standing in front of the mirror I cover my left breasts just to imagine what I would look like had that nipple survived. I know I’m going to have something reconstructed in November…but it will never be MY nipple.
I went this past Thursday for some theraputic body work (massage). And the question was asked “What would you like out of our time today?” I felt this surge of emotion come up that I knew was bubbling under the surface. I had prayed about it on my drive over because I did have a goal. I told him, “I want to feel more whole. I feel like my body is in pieces.”
I’m still working on it. I am truly so grateful for the opportunity to eliminate risk of breast cancer but I am realizing I am far from being “on the other side”.
Category The Journey | Tags: BRCA,breast cancer,emotions,nerves,nipple,pain,recovery,scar | No Comments
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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.
Category The Journey | Tags: BRCA,breast cancer,charleston,decisions,expenses,finances,insurance,mister,planning,plans,plastic surgeon,recovery,scar,surgeon,Surgery,travel | No Comments
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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!
Category The Journey | Tags: BRCA,breast cancer,charleston,decisions,nipple,plastic surgeon,recovery,surgeon,Surgery,travel | No Comments
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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.
Category The Journey | Tags: BRCA,charleston,clothes,decisions,emotions,recovery,Surgery,swimsuit,travel,waiting | 3 Comments
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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
