December 12, 2012 by Julie
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 24, 2012 by Julie
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
May 31, 2012 by Julie
********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
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
April 2, 2012 by Julie
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 28, 2012 by Julie
Today I called and scheduled my stage 2 of surgery. It will be on May 22nd in Charleston, SC. Same docs, same hospital, same beautiful city…this time I’m really excited. This surgery will be outpatient but I do have to be there a day on either side…possibly two days post surgery in town. In stage one they left an oval shaped piece of skin from my donor site (yes my booty) attached to the fat tissue they used to create my breasts…so I have that skin on my breasts now. Obviously none of you have seen it but it’s something I see every day. In stage 2 they will remove that skin and I will be left with one short scar out to the side of my breast. They will also make sure all the fat tissue has survived and remove any that hasn’t. They will recreate my left nipple which didn’t survive the surgery (out of that skin flap…fascinating right?). They will also do some contouring to make sure the breasts are the size and shape that looks best. I do not think I will have any drains. Hopefully this will be a piece of cake compared to stage 1. If all heals well my breasts will be finished…done! I am so excited!
It’s amazing how much I have become accustom to my new breasts. At first it really felt like they were foreign objects on my chest. I had such a hard time breathing and being able to stay calm. Now even though I don’t really think I have regained any sensation in the breasts that I didn’t have when I first had surgery they do feel more normal. What a blessing that is. It’s not a concept that I can even accurately describe in words…if you’ve been there…you understand. I’m growing and changing just like everything in life….grateful for these plants that were sent to me that remind me of just that.
Did I mention I’m so excited?!!!!!
Category The Journey | Tags: blessings,BRCA,breast cancer,charleston,decisions,nerves,numb,pain,plastic surgeon,recovery,surgeon,Surgery,travel | No Comments
March 3, 2012 by Julie
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
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
February 20, 2012 by Julie
February 20th…getting so close to being a month out of surgery. It feels so strange. Time passes so slowly while I sit at home but yet I look at the calendar and 20 days have passed since that early morning before my surgery.
Yesterday I was blessed to have a friend pay for a massage therapist to come to my home. She spent over an hour doing healing work with her hands on my body. She mentioned more than once the word “trauma” in reference to my surgery. I hadn’t ever really thought of it as trauma because that word conjures up thoughts of a terrible accident or something that is done to you without your permission. I had given consent for my body to be sliced and diced and rearranged. But if my body has a viewpoint I could see my body feeling like it had a “trauma” done to itself. She helped my body to relax. My muscles are constantly tense and spasming. I don’t know what is “normal tightness” and what is just my body being tense. It’s a new normal completely.
The best part about the day was that after the massage I felt my heart take a turn. I felt positive for the first time in a while. I gave myself permission to be happy that my donor site wounds seem to be healing nicely. I fixed myself some lunch while my mom was massaged (thank you to my friend for including her as well). I was independant for an hour…all by myself and I felt “normal” somewhat. I haven’t really needed many pain meds and last night I found an entirely different way to sleep with many pillows that didn’t encourage swelling in my chest. I would call these times of healing. It really gives me hope for what another week of recovery will hold. I can only imagine how great I will feel when THESE DRAINS COME OUT!!!!! I’m planning a return trip to Charleston with a friend for the grand removal.
Category The Journey | Tags: blessings,charleston,drains,family,friends,nerves,pain,plans,scar,travel | No Comments
February 17, 2012 by Julie
Dr. James Craigie
Dr. Paul Baron
Last night as I was lying in my bed waiting for my body to fall asleep my thoughts turned to my surgeons in Charleston. I started to think through the first time I met them.
I drove from Athens, GA to Charleston, SC with the Mister so that we could visit the city and see if these were the right doctors for me. Some friends of mine who used to live in Charleston recommended a wonderful place to stay and we spent a whole day enjoying the city. The next day we drove to the Charleston Breast Center and first met with Dr. Craigie, plastic surgeon and his PA (whom I had already had over an hour conversation with over the phone…she was amazing and answered all my questions in depth). I already felt so comfortable since I had been in contact with them over the phone. In fact when I had emailed I had gotten a reply from Dr. Craigie himself. They were so amazing. The Mister had so many questions and Dr. Craigie fielded them all. They gave us so much attention and put me at ease. It really was feeling like the right choice. Then I was able to meet with Dr. Baron, the breast surgeon and his PA. Dr. Baron was very attentive to my questions and then at the end of our meeting he leaned over and gave me a hug and said “You’re going to be ok. We’re going to take good care of you.” It was right then that my heart decided. These were the right men for the job. Not only are they amazing surgeons but they were compassionate and caring. I felt as though I had two fathers who were going to care for me like a daughter. We scheduled my surgery for February 1, 2012. I would not see them again until the day before surgery.
They did not disappoint when it came to be surgery time. I met with Dr. Craigie the day before to be marked for surgery. This was the first time my mom had met him and he immediately greeted her with a hug. I felt so grateful for the PA Christina…seeing her was instant comfort. All of my pre-op and post-op meetings with them have been wonderful.
Last night I began to cry. My tears were not sad tears even though I’m still so uncomfortable and unable to sleep on my side. My tears were of gratitude for the healing hands of Charleston. I missed them. It seems so strange for them to be far away and not be able to see them. I am not sure if I will need to go back for a checkup before stage 2 of my surgery. I am grateful that I decided to go to Charleston. I will be eternally grateful for Dr. Craigie, Christina and Dr. Baron. They went above and beyond and took care of the whole person.
Dr. James Craigie and Dr. Richard Kline, The Center for Natural Breast Reconstruction, Charleston, SC – on facebook
Dr. Paul Baron, Charleston Breast Center, Charleston, SC – on facebook
Category The Journey | Tags: blessings,breast cancer,charleston,decisions,God,mister,planning,plastic surgeon,surgeon,Surgery,travel | No Comments