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
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
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
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
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
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
March 16, 2012 by Julie Moon
Yesterday marked six weeks since my surgery. I can say that I do actually feel like myself again. I feel like I am on the other side. I am not totally healed. I still have gauze covering my wounds and I still have scars that need to be revised and more surgery on the books for the rest of the year but I can say without a doubt that I’m grateful I had this surgery. I feel happy and healthy. I know I will regain complete mobility in my arms and that I will feel like myself more and more.
On Tuesday I had the opportunity to get my hair styled and have some very flattering photographs taken. It is for something we are about to do at our photography studio. It was just the boost of self confidence any woman needs…especially one who just underwent a mastectomy. I felt absolutely beautiful. I took some time to look back on my photos just after surgery and wow what a ways I have come in those 6 weeks. I have said it before but science and this surgery is amazing. I feel so blessed.
Six Weeks!!!! I can hardly believe it!
Category The Journey | Tags: BRCA,breast cancer,emotions,photograph,recovery,scar | No Comments
March 5, 2012 by Julie Moon
Let’s face it ladies…it’s never fun. You find the one or two styles and brands that you love and fit you the way you want. Then you just keep them stocked in your drawer. But then they go and discontinue that bra and you’re back at square one. So imagine my fun…I have an empty bra drawer. I spent a couple hours at target today…and a good friend has a few she’s going to bring over tomorrow for me to try out. And then…get this…I get to start from scratch AGAIN after my May surgery. I keep repeating to myself….I am thankful I have healthy breasts that need a bra.
Category The Journey | Tags: bra,emotions,recovery,Surgery | No Comments
March 3, 2012 by Julie Moon
This photo is from March 1, 2012. One month exactly after my bilateral mastectomy and SGAP breast reconstruction. I have a 10 inch scar from each hip down into a V on my buttocks. Yes…TEN inches EACH. I have an oval shaped paddle of skin 5 inches wide on each breast that is a different color from the rest of my breast because it’s skin from my back side. It will be removed in the second stage of surgeries. I have an open wound on my left breast and a nipple that has not healed yet. That nipple will require reconstruction to look “normal” again. I have two very sore wounds on each hip that are still leaky and healing from having drains removed. But…do you know what I see when I look at that picture? I see ME! I see a woman who looks like she used to with a smile on her face. I see myself wearing clothes out of my closet that weren’t purchased specifically for surgery. I see a woman about to go to dinner with her family and enjoy a night out. I see a woman who doesn’t look broken. My body has undergone quite a bit of trauma. I am regaining mobility but I am still sore and weak. But my heart is happy that I am moving forward. I am seeing myself heal. I am working hard to make that happen and will continue to do so. Someday I believe I will feel together, whole and beautiful without my clothes on because I will heal. This picture gives me hope.
Category The Journey | Tags: blessings,BRCA,breast cancer,drains,emotions,healing,pain,planning,plans,plastic surgeon,recovery,scar | 1 Comment
March 1, 2012 by Julie Moon
Monday morning one of my besties volunteered to drive me to Charleston to see the doctor and to get my last two drains pulled. If you don’t know what drains are, consider yourself blessed. Having them for a month has been a drag. I was so excited for this day to come. We drove straight there…nearly running out of gas because evidently noone thought it was a good idea to put a gas station on I-20 for what felt like 100 miles. Thankfully we made it to our hotel without having to walk to any gas stations.
We relaxed for a bit and decided to go out to dinner in downtown Charleston at a great little place called Blossom. It’s wonderful to have friends who have lived there because they always give us the best restaurant recommendations. I love being in Charleston! We turned in early and watched some crazy tv until it was time to fall asleep. Isn’t hotel tv the best…you watch things you never would have watched at home. We watched some TLC show where a child had a parasitic twin removed from his body…wha?
Tuesday morning we went to my favorite breakfast spot…Hominy Grill. I have yet to have dinner or lunch there but I have plenty more Charleston trips planned this year. It was delicious as always. It reminds me of our very own Athens restaurant, Mama’s Boy just with more seafood. We killed some time shopping at TJMaxx and Homegoods and found a dress that might work for the baby girl to wear as flowergirl in May.
Finally it was time for a visit and I was so excited. In the waiting room we met another BRCA 1 family. A young girl from Atlanta. It was great to share stories and realize that we were going through much of the same journey. She had a failed flap in her first surgery….such a small percentage of women have this happen. So she was there having her second reconstruction.
At last it was my turn to see Dr. Craigie. He came in and sat down like an old friend ready to hear how I was doing. We discussed my recovery and then he got to work. I had nipple sparing surgery which means we attempted to save the nipple to be part of the reconstruction. This is difficult because the nipple has the weakest blood supply after mastectomy. One side has healed beautifully and managed to get a very good blood supply. The other side has not been so lucky. We have been using silvadene cream for the past 3 weeks trying to help it heal. Dr. Craigie cleaned the wound and cut away the dead tissue and now we are working on my protein and letting the skin continue to grow to heal the wound. Please pray for this to heal. It is by far the scariest part to me…looking at my body with an open wound. There still is a chance that there is enough healthy tissue for part of my nipple to survive. The second stage of surgery we will be able to repair/construct anything that we need to though. I have full confidence in my surgeon and his ability to make me whole again. I have seen AMAZING pictures and I believe I will be one of those too. THEN HE PULLED MY DRAINS!! Woo hoo! It was glorious to be free of those darn tagalongs. They did a great job but I’m glad to let them go!
After my wonderful appointment we celebrated with frozen yogurt and then headed on our journey home. I got to see my baby girl before she went to bed on her birthday! What a wonderful trip!
Look what my family had on the door waiting for me!
Category The Journey | Tags: baby girl,blessings,BRCA,breast cancer,charleston,drains,emotions,family,friends,plastic surgeon,recovery,travel | No Comments