December 4, 2013 by Julie
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
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
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
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
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
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
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
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
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
********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