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
July 15, 2013 by Julie
Today I went into TJ’s to do my regular grocery shopping. My eyes were sore from crying. I lost my father in law just 5 days ago and today was a particularly tough day. I did my shopping and got several glances…it was obvious I had been upset. I went to the checkout and two people were there to greet me. A young woman bagging the groceries and an older gentleman ringing them up. They asked me “How was your weekend?” and I couldn’t hide my sadness. I just shook my head and my eyes welled up with tears. The girl said “Are you ok?” and really looked genuinely concerned. I replied “No, my father in law died this week and it’s been particularly hard.” I started to cry. The girl apologized and then walked away. She returned a few minutes later with a beautiful bouquet of flowers and said “I’m sure these will make you cry more…we are sorry for your loss.” I continued to cry through the rest of the checkout process. It was a small, simple gesture that truly meant so much. I am sure this is something passed down from those much higher…what a wonderful thing they are passing on to their employees and enabling them to do something more for customers than I ever would expect. Those flowers sit now on my dining room table reminding me to be compassionate and kind and to do for others when I can. Thank you Trader Joe’s.
Let’s be kind to one another. You never know what others are going through.
Category The Journey | Tags: blessings,family,loss,sadness | 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 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
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
May 4, 2012 by Julie
Today I spent the morning at the hospital with my family. My future brother in law was just diagnosed with testicular and renal cancer. When I got the news from my sister I felt like someone punched me in the stomach. This is my baby sister and her sweetheart. How in the world could this be happening while they are falling in love and planning their wedding. Just took the wind right out of me. I feel sad and angry and a bit overwhelmed by it all. ENOUGH WITH THE FREAKING CANCER!!!! He had an orchiectomy surgery and we await the pathology from that surgery and then he will have his kidney biopsied next week. I’m so grateful he is on the journey to taking care of all of this but goodness it is so intense. It makes my heart break because he is such an amazing guy and I’m so grateful my sister has found him.
But back to perspective. As we were sitting in the waiting room I was surrounded by family and friends who have all had intense things in their lives. Each of their stories is quite overwhelming honestly. But there we all were…sitting there, survivors each in our own way. I am grateful. I am humbled by the whisper that is our life in this large world. Our lives are a mist. Be grateful….be still…be intentional. Soak it all up because in an instant…we are dust.
Category The Journey | Tags: biopsy,cancer,family,Surgery,waiting | No Comments
March 5, 2012 by Julie
I spent a weekend in October in Atlanta in a sea of pink. I was working on the crew at the Atlanta Susan G Komen 3 day For The Cure. I worked on the crew which means I was one of the 425 who supported 2400 walkers in walking 60 miles in 3 days to raise money to find an cure for breast cancer.
I carry the BRCA 1 gene mutation. My mother is a breast cancer survivor and carries the BRCA 1 gene mutation. My grandmother was a double breast cancer survivor. My aunt died of complications from her breast cancer therapy. It is an event that means a great deal to me and my entire family.
It was an amazing event and I’m so grateful that I was able to participate. I have already signed up to be on the crew in Atlanta in 2012 along with my mother, her best friend, my brother,his wife, my sister, her fiance, my best friend and a friend I made at the 2011 3day. I plan on walking my first event in 2013 with my husband. The 2011 Atlanta 3day event raised 6.5 million dollars for breast cancer research. I stood in awe at the closing ceremony looking around at all the other people who had worked/walked that weekend to support something that affects me so deeply. Several of you donated to support my efforts. For that I am beyond grateful.
I’d love your support for 2012! Will you help me reach my goal of $500?
Category The Journey | Tags: 3day,BRCA,breast cancer,crew,family,friends,walking | No Comments
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