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
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
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
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
June 10, 2012 by Julie
These days I feel like I’m on a roller coaster. One minute I’m ecstatic about how things are going and then the next minute I’m feeling like I’m never going to be finished and whole. I remember my mom talking like this. I remember her feeling like she was never going to feel great again. She is not without complications even 4 years later but she is in a much better place.
Last night as I pulled off a piece of tape that has been over the incision on my right breast (all my wounds were sewn up with something that looks and feels like fishing line and then taped over with something I think looks like sheetrock tape) I was amazed. My right breast looks so very normal. So much like the me from before surgery. I have a 4.5 inch incision on that breast but other than that I’m feeling so happy with the results. The scars will fade and it will be great. Times of rejoicing.
Then I pulled off my no stick gauze from the left breast that is looking so rough. It’s hard to even imagine it looking normal again. Lots of incisions and a bleb of a “nipple” they are working at creating and the incisions aren’t even closed tight. Feeling like my insides are exposed and I’ll be eternally doing wound care. Times of mourning.
We attempted a nipple sparing mastectomy for both sides. The nipple has to receive adequate blood flow to survive and Leftie Loser did not. She bit the dust early and now we have to replace her. It makes me sad to see how great the right side looks and know what I would look like right now if that nipple on the left had survived. Makes me well up with tears right here right now.
But then I remind myself that I did not go through all of this just to have two fuller, more youthful breasts that look perfect. I went through this to make sure I’m around to see this little bit grow her own breasts and make a life for herself. I went through this to live a long life and I can live a very long life with one beautiful breast and one ok breast…neither of them are going to kill me. And THAT my friends is what matters!
Category The Journey | Tags: baby girl,BRCA,breast cancer,emotions,family,nipple,recovery,sad,scar | No Comments
June 9, 2012 by Julie
I’m happy to be nearing another weekend and getting closer to being 3 weeks post surgery. I think at 3 weeks I can stop wearing these horrid compression garments. I’m hoping that I can start getting 1/2 of me in the pool (if the water in Georgia will ever warm up). I’m feeling more like myself and I’m going to start working again next week.
I’m driving…but it does make me very sore.
My house ends up looking like this more often than not…which I’m slowly getting used to. Remember I’m an organizer by profession.
Though I am feeling better there is lots going on in my family. Stuff with my father in laws health and also with my future brother in law and my mom. I’m ready for the universe to give us all just a couple months off from all of it. Somehow I don’t think that’s the direction we’re headed.
As far as my recovery…things are looking on. My left breast is not pretty but not infected and supposedly healing…though I’m skeptical that everything is going exactly right. I gotta keep it bandaged and keep an eye on things. Also…you’d be amazed how many times your children bang into your chest on a daily basis…trust me…it’s lots. ouch.
Category The Journey | Tags: BRCA,breast cancer,family,pain,recovery,scar,waiting,work,wound | 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 29, 2012 by Julie
The Center for Natural Breast Reconstruction will be having a free webinar on Thursday, April 12, 2012 7:00 p.m. ET / 4:00 p.m. PT
Sign up here for the free webinar: http://breastreconstructionnetwork.com/rightforme/
From their website:
When you join us on April 12, you’ll discover…
- Exactly what natural breast reconstruction is and whether you’re a good match for the procedures we offer.
- What all the acronyms mean…DIEP, GAP, TUG, SIEA.
- What you can expect in terms of hospital stays, recovery time, and scarring.
- Answers to insurance questions relating to breast reconstruction. Our insurance specialist will be on hand during our Q&A.
One in eight women in the U.S. will be diagnosed with breast cancer at some point in her life.
Take Control of Your Life!
Category The Journey | Tags: BRCA,breast cancer,charleston,decisions,emotions,expenses,fear,finances,insurance,medicine,pain,planning,plans,plastic surgeon,recovery,scar,surgeon,Surgery,travel | No Comments
March 16, 2012 by Julie
Yesterday marked six weeks since my surgery. I can say that I do actually feel like myself again. I feel like I am on the other side. I am not totally healed. I still have gauze covering my wounds and I still have scars that need to be revised and more surgery on the books for the rest of the year but I can say without a doubt that I’m grateful I had this surgery. I feel happy and healthy. I know I will regain complete mobility in my arms and that I will feel like myself more and more.
On Tuesday I had the opportunity to get my hair styled and have some very flattering photographs taken. It is for something we are about to do at our photography studio. It was just the boost of self confidence any woman needs…especially one who just underwent a mastectomy. I felt absolutely beautiful. I took some time to look back on my photos just after surgery and wow what a ways I have come in those 6 weeks. I have said it before but science and this surgery is amazing. I feel so blessed.
Six Weeks!!!! I can hardly believe it!
Category The Journey | Tags: BRCA,breast cancer,emotions,photograph,recovery,scar | No Comments