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
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
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
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
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
May 31, 2012 by Julie Moon
********warning…there is a whole lot of whining in this post
i have to get it all out before I can get over it ********
I haven’t posted since I got home from Charleston. It’s been a week now since I returned. Honestly I haven’t done much of anything. I am having a much harder time with this stage than I expected. It helps me greatly to look back on photos of myself as a happy, bright eyed woman because right now I am not sure where that chick is. I have only really gotten dressed once in the past week and that was because some friends came over to celebrate Memorial Day. I barely got off the couch that day and every day since. So…let’s break it down so I can process all that I’m feeling.
1- I hate meds. It’s good I don’t need them on a regular basis because my body freaking hates meds. I had to quit taking the dilaudid because even zofran wasn’t taking care of my nausea. I decided I could deal with a bit more pain if it meant less nausea. I hate how meds mess with your digestion. I hate that I have to set a timer to remember to take something around the clock. I’m finished with my antibiotic. I’m taking extra strength tylenol but last night I tried some Aleve to see if that helped more. Medicine makes me feel weak…not myself.
2- I feel guilty. Summer started on May 16th for my children. I feel like they are just missing out on the first month of summer, stuck with their sick mom in the house or pawned off on other people. I want to take them to the pool but I can’t get in the pool…which poses a problem when it’s 95 degrees outside and when you have a three year old. A few people have taken the kids to the pool and I feel like I’m missing out. I want them to remember this summer as a fun time not as the summer their mother was laid up on the couch. I’m tired of hearing the tv blaring but little children don’t find things to do on their own easily without some encouragement. I just feel like I’m in a fog and the days are slipping by.
3-I’m scared. I see my wounds and worry about my healing. In my head I know things are going to go fine but it’s such a delicate thing. I pray every day that my body will be whole and complete and healthy but I am scared.
4- I’m worried. I worry about my brca sisters. I know so many of them have been looking to me as a strong example. They have told me their concerns and fears and I have been the champion cheerleader. I have encouraged them and been their support and now I’m weak and I worry that this might scare them. I know they want to know the good and bad but I know how scary it can be also.
5- I’m grateful. My friends have not missed a beat helping me out this time as well. Stopping by with food, to clean up my living room or do a load of laundry. I’ve had plenty of help with my children.
Last night one of my friends came and got my oldest two children. She took my wild and crazy 7 year old boy and my 9 year old with a low grade fever who had thrown up the night before. She has three of her own. Her selflessness made me cry. To take a friend’s children when one of them is sick…potentially taking that on for your own family…loving my children as her own was remarkable. I have said it before…my village is amazing. Today my sister came and got the little one and they are off for a day long adventure. I want my babies close to me…they make me feel comforted even when they are driving me crazy. To be alone is a bit scary sometimes but I think I need this day to process, let it all out and stand back up. I know my kids are having the time of their life…they will come home happy, recharged, well fed and loved and hopefully I will greet them with a bit of the same.
How I look has become secondary this week…how I feel is so much more important right now. I need to feel better. I’m planning on going out today…somewhere. I’m going to get out of the house and go somewhere that makes me feel normal.
Category The Journey | Tags: baby girl,big girl,blessings,BRCA,breast cancer,emotions,fear,friends,medicine,recovery,Scared,Surgery,the boy | No Comments
May 25, 2012 by Julie Moon
I never tire of seeing this beautiful city. Charleston in my heart is a place of healing. It is a place of happiness for me. It was just four short months ago that my life took such a turn here in Charleston. I made a very tough decision to do something radical to ensure a life free of breast cancer. And this past week I was able to return to Charleston for the stage two of my reconstruction.
Two of my very best friends packed up and drove me to Charleston. My mom couldn’t leave until Tuesday so these wonderful women drove me down for my preop consult. We then had the opportunity to meet someone who is in the process of her reconstruction as well. The mother of a good friend of ours who I referred to Dr. Kline and Dr. Craigie. She’s had some obstacles to overcome in her recovery but it was so inspirational to see her and hear her express her gratitude for leading her to Charleston.
Stage two was lots easier than stage one. My surgery was only 5 hours instead of 11. However it was outpatient so as soon as I was in recovery they were waking me up and trying to get me going. I felt so groggy. The way you feel when you’re asleep and dreaming and trying to wake up in your dreams. Everything is blurry and impossible. It’s so very frustrating to be in that state. Everytime I sat up my face went pale and I thought I would pass out. My friend Meg and my mom looked at each other with concern…how in the world were they going to get me into our hotel room. Eventually they did it…they got me settled in and I slept most of the rest of the day. Right before they got the call that I was in recovery they were preparing to order sandwiches…so their lunch got delayed until dinner. Sorry ladies!
This stage they revised my scars on my breasts and recreated the nipple that I lost in stage one. Dr. Craigie also revised the ends of my donor site scars so they are now flat instead of creating “dog ears”. Some more contouring was done so that everything was smooth and even. I am very sore this time but much more mobile. I still have restrictions for about 3 weeks and will be resting and recovering at home. I feel so happy with the results. I still have a bit of a road of healing, getting these wounds to close up completely and some time getting these scars to fade. I still may do another revision on my donor site in the future but I won’t be doing anything until the fall. Oh and the best part of stage 2…no drains! I do however have to wear compression garments for the next three weeks…which makes me a bit nauseous.
I’m incredibly tired and my body is sore…I can hardly believe that I have two stages of surgery behind me now. I have already been able to connect with several women locally who are BRCA + and some others long distance via this blog. It makes me so happy to know that my journey gives strength to these other women.
My mom and I having breakfast the day after surgery at IHOP.
Category The Journey | Tags: blessings,BRCA,breast cancer,charleston,friends,plastic surgeon,Surgery,travel | 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
April 2, 2012 by Julie Moon
Would you believe that tonight is the first night I will go to bed bandage free since my surgery on February 1st! Two month anniversary today and I am so grateful for this milestone. It is so amazing to be closed…not oozing, leaking, bleeding, dripping, sticking….nothing but normal! Normal…haha that’s a good one. But really I do feel great. I’m grateful that my twice daily ritual of changing my bandages gets the month of April and most of May off. What a big deal! This certainly wasn’t anything quite as epic as finishing up with my drains…omg I hated those things but it is good. We have a long long way to go before I look “normal” again but I have faith and I know it’s going to happen.
And guess what…it’s 50 days until my next surgery. I’m so excited about this one. I’m so excited about getting put back together and having nice round breasts instead of these odd shaped ones I have right now. I’m so excited about having two nipples. I’m so excited about losing the skin flap from my donor fat site. What a big day it will be!
Category The Journey | Tags: bandages,blessings,BRCA,breast cancer,charleston,drains,plans,recovery,scar,Surgery | No Comments
March 29, 2012 by Julie Moon
The Center for Natural Breast Reconstruction will be having a free webinar on Thursday, April 12, 2012 7:00 p.m. ET / 4:00 p.m. PT
Sign up here for the free webinar: http://breastreconstructionnetwork.com/rightforme/
From their website:
When you join us on April 12, you’ll discover…
- Exactly what natural breast reconstruction is and whether you’re a good match for the procedures we offer.
- What all the acronyms mean…DIEP, GAP, TUG, SIEA.
- What you can expect in terms of hospital stays, recovery time, and scarring.
- Answers to insurance questions relating to breast reconstruction. Our insurance specialist will be on hand during our Q&A.
One in eight women in the U.S. will be diagnosed with breast cancer at some point in her life.
Take Control of Your Life!
Category The Journey | Tags: BRCA,breast cancer,charleston,decisions,emotions,expenses,fear,finances,insurance,medicine,pain,planning,plans,plastic surgeon,recovery,scar,surgeon,Surgery,travel | No Comments