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
March 28, 2013 by Julie
I am finding lately that I feel the need to distance myself from all things BRCA related. It’s a very strange feeling. I haven’t really been able to open up the facebook group to read posts and I haven’t been to the FORCE page at all. I know I could be helping others. One of my newest BRCA friends has asked me to make a video and I just can’t bring myself to do it. I am grateful…so grateful. But every single day it is so very hard to look at my body. It is so very hard to see those bright red scars. It is so very hard to look at my left breast lacking a nipple and my right breast lacking volume. I see every flaw in a way I don’t think I did before surgery. Today I had to change the side of my body I wear my purse on because I have a spot on my back thigh that is sore all the time and the purse hitting against it finally became too much. I look at these things and I realize so clearly that I had the opportunity to count the cost before I took the plunge. If I had been diagnosed with breast cancer I would not have had that luxury. But then sometimes it’s so painful that I CHOSE this. It gets too raw and I have to distance myself from all of it just to make it through the day. It is ALWAYS on my mind….EVERY SINGLE DAY. It’s like background noise just humming in my brain. I hope this is just a phase.
And then today a friend posted on facebook about having to go back for a second screening after an ultrasound and I remember that feeling so vividly. I am grateful for what I chose but good grief this isn’t easy.
Category The Journey | Tags: BRCA,breast cancer,decisions,emotions,nerves,pain,recovery,scar | 1 Comment
February 1, 2013 by Julie
I have recently made a commitment to myself to get strong in 2013. 2012 was a year for mental strength…strength of heart and soul…but my body is weak. I am whole, put back together but I have been sedentary and I can definitely tell. I have started working with a personal trainer and plan to change the composition of this body in 2013. I want to work on my posture as well as all the squishy parts of me. I’m excited about the changes I am making but I do realize it’s going to be much harder than any surgery I have had. It’s a lifestyle change and it takes time and discipline. I had my daughter take some before shots for me to remind me what I’m working towards and to document the changes that I am able to see in my body. Here’s to a redefined body!
After slipping on my swimsuit I realized something very disappointing. My hip incisions are very visible in this swimsuit. And it’s not a skimpy suit at all. My heart really sank. I don’t know why I was surprised. I can see the scars above the waistline on my jeans some days. *deep breaths* This is all worth it. They are merely scars of what a brave woman you are. They are not scary or ugly. You are going to be swimming at the pool wtih your children and not suffering from breast cancer. I’m gonna need a couple mantras to keep me going this summer. It’s like you think it’s behind you and you’re past all the hard stuff and then *WHAM*….something else hits you in the face like this.
Category The Journey | Tags: body image,breast cancer,clothes,decisions,emotions,exercise,scar,swimsuit | 2 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
November 8, 2012 by Julie
I have been having so many more pains in my breasts. It’s strange to have pain in your breasts…I mean aside from being pregnant or menstruating I really didn’t ever have any noticeable discomfort in my breasts. I am going to attribute this to nerve growth. I can point out certain spots that have throbbing feelings. I have one spot that always hurts when I’m braless. I shooting pains in some other spots. It reminds me of being a nursing mom…always touching my breasts because I was constantly aware of them. Now I have to make sure I’m not massaging myself in public.
Category The Journey | Tags: nerves,numb,pain,recovery | No Comments
November 6, 2012 by Julie
I’m three weeks away from my next surgery. It’s been a while since my last one and so now this seems a bit more surreal. I’ts hard to explain how I feel….but here goes…
I’m nervous…because let’s face it…going under anesthesia is just kind of scary. Also people cutting on your body is kind of scary if you let yourself think about it too much. I always picture what I look like on the operating table. I kind of wish I had pictures…ones that I could just glance at for a quick second and then close and not look at for a long time. I’d just like to have a little sneak peek from time to time. I always wonder too if I said any funny things as I was rolling back into the operating room while under my versed trance.
I’m excited…because I’m getting fixed up. I will hopefully come out of this surgery finished with my reconstruction. It’s kind of hard to wrap my brain around that one because it’s taken so very long to get here. I love that I’m finishing up just a little over a year after I really made my decision to get things rolling. I’m excited to not have a skin flap on my left breast that doesn’t belong. I’m excited that I will hopefully have what looks like a nipple again on the left side. I’m excited that they are going to fill the two deep holes on my hips with my squishy booty fat. I’m excited that they are going to try to fill in my right breast so that it matches my left. It can only get better, right?
I’m amazed…because it’s taken a year to try to recreate my body back to the beautiful form that God created. God is amazing and trying to replicate his work is no easy task. I’m also pretty amazed that my surgeons have been able to do what they have done. I’m so grateful for their skilled hands, their tireless feet and backs (heck of a long surgery I had), their compassionate hearts and their big brains to be able to learn how to do what they do.
I’m grateful…because I have been given so much. I’m grateful for science and the study of the human DNA. I’m grateful that they discovered the BRCA genes and noticed the mutations and what risks that would cause. I’m grateful that I have the opportunity to eliminate my risk my having a surgery. I’m grateful for the health insurance that pays for the surgeries (well most of the surgeries). I’m grateful for my husband who works so hard for us to have that health insurance, to pay off the parts that the insurance doesn’t cover and to take care of all the things that I can’t when I’m recovering. I’m also grateful that he loves me no matter how many inches of scars I have covering my body now. I feel beautiful to that man no matter what. I’m grateful for my mother’s service to me each time I’ve had a surgery. The number of hours she has cared for me are great! I’m grateful for all my friends and family who have supported me, trusted my instincts, believed in the process and been advocates for me. I’m grateful for my future!
T minus 3 weeks….time to get my packing list ready.
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October 26, 2012 by Julie
One of the things that the 3day taught me this year is that everyone has a story. Yes, all the stories at the 3day were about breast cancer…stories of loss, survival and everything in between. Some stories were shocking, others were sad and still others were inspirational. What I realized is that we ALL have a story to tell. In fact, we all have many stories to tell. Every one of us has gone through something that has changed us, broken us, helped us grow, changed our future, opened doors, softened our hearts or hardened them. Sometimes we get so caught up in our own stories that we fail to notice that everyone has something to share.
At the beginning of the 3day they ask us to make a promise. The promise I made this year was to not make the event be all about ME. In the past year I added an additional chapter to my life story. It’s quite a dramatic story…not too sad but kind of intense. People need to hear my story but sometimes they don’t need to hear it more than they need to share theirs.
I want to share my story because I am proud of it. But more importantly I want to share my story because I think it will save other people’s lives. I don’t know that I’ll ever know if my story in fact saved someone’s life as I still don’t have the ability to tell the future. I do know that for the possibility of that happening though…it’s worth any criticism I get about speaking out. It’s worth any amount of strange comments from people trying to relate to my situation. I also have many other stories to be shared…some are happy and some are sad.
And for every person I encounter there is something that has changed them…deeply. That funny, sweet fella with glasses….he lost the love of his life and their future just as they were starting their story. That compassionate, selfless family who is always willing to lend a hand…they had a daughter born needing a new heart and even that wasn’t enough to keep her around. That sarcastic, confident woman who’s always online…she’s grown into an amazing woman despite the crappy men who have tried to keep her down and she’s raising a pretty awesome son too despite what a tough life she’s had. That beautiful, athletic woman you see running your neighborhood…she almost lost her son in a car crash and he’s still struggling to get back to ‘normal’. Are you taking the time to know their stories or are you too busy comparing yourself to them on the outside, being critical or just talking about yourself?
You might know their story…but you might not.
Take the time to be a listener…and if you’re brave enough…take the time to tell your own stories.
Category The Journey | Tags: 3day,emotions,life,promises,sharing,stories | 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 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