September 19, 2013 by Julie
It has never occurred to me to consider finding out about my BRCA status and then keep it to myself. I suppose I’m a pretty open person. My children were 9,7 and 3 when I had my sugery. I couldn’t really hide that from them. It was pretty obvious and significantly affected their lives. But what if they were grown and out of my house? What if I had the test and didn’t share that info with them? What if I knew I was BRCA positive but didn’t want anyone to know?
My oldest has asked me more than once “What if I have the gene, Mom?” and boy does that just force me to take a deep breath. I reassure her that it’s not anything to concern herself with now and that when the time comes I will support her in finding out and I am confident that the technology will be completely different for her. But there is no way that if she were a grown woman now I would not share this info with her.
I fully support people dealing with things differently than I have…but I would want them to have all the information they needed to make an informed decision.
Category The Journey | Tags: BRCA,children,family,genetics | No 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
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
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 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
October 17, 2012 by Julie
Today I received a message from a friend:
After reading your blog during your surgeries I showed it to a good friend of mine (they have lost 7 women in the family to breast cancer and she is currently fighting it for a second time!). Her younger sisters are now all getting tested for the gene due to your article! (Apparently their doctors had not brought it up to them yet at that time.)
And that folks…is why I am writing my story.
I’m feeling all warm and fuzzy about the internet, technology and being able to spread the word.
Category The Journey | Tags: blog,BRCA,breast cancer,family | No Comments
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
October 1, 2012 by Julie
I found this quote this morning…good stuff.
It is not the strongest of the species that survives. It is the one that is the most adaptable to change. – Charles Darwin
Category The Journey | Tags: BRCA,breast cancer,change,darwin | No Comments
September 25, 2012 by Julie
“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