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
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
May 25, 2012 by Julie
I never tire of seeing this beautiful city. Charleston in my heart is a place of healing. It is a place of happiness for me. It was just four short months ago that my life took such a turn here in Charleston. I made a very tough decision to do something radical to ensure a life free of breast cancer. And this past week I was able to return to Charleston for the stage two of my reconstruction.
Two of my very best friends packed up and drove me to Charleston. My mom couldn’t leave until Tuesday so these wonderful women drove me down for my preop consult. We then had the opportunity to meet someone who is in the process of her reconstruction as well. The mother of a good friend of ours who I referred to Dr. Kline and Dr. Craigie. She’s had some obstacles to overcome in her recovery but it was so inspirational to see her and hear her express her gratitude for leading her to Charleston.
Stage two was lots easier than stage one. My surgery was only 5 hours instead of 11. However it was outpatient so as soon as I was in recovery they were waking me up and trying to get me going. I felt so groggy. The way you feel when you’re asleep and dreaming and trying to wake up in your dreams. Everything is blurry and impossible. It’s so very frustrating to be in that state. Everytime I sat up my face went pale and I thought I would pass out. My friend Meg and my mom looked at each other with concern…how in the world were they going to get me into our hotel room. Eventually they did it…they got me settled in and I slept most of the rest of the day. Right before they got the call that I was in recovery they were preparing to order sandwiches…so their lunch got delayed until dinner. Sorry ladies!
This stage they revised my scars on my breasts and recreated the nipple that I lost in stage one. Dr. Craigie also revised the ends of my donor site scars so they are now flat instead of creating “dog ears”. Some more contouring was done so that everything was smooth and even. I am very sore this time but much more mobile. I still have restrictions for about 3 weeks and will be resting and recovering at home. I feel so happy with the results. I still have a bit of a road of healing, getting these wounds to close up completely and some time getting these scars to fade. I still may do another revision on my donor site in the future but I won’t be doing anything until the fall. Oh and the best part of stage 2…no drains! I do however have to wear compression garments for the next three weeks…which makes me a bit nauseous.
I’m incredibly tired and my body is sore…I can hardly believe that I have two stages of surgery behind me now. I have already been able to connect with several women locally who are BRCA + and some others long distance via this blog. It makes me so happy to know that my journey gives strength to these other women.
My mom and I having breakfast the day after surgery at IHOP.
Category The Journey | Tags: blessings,BRCA,breast cancer,charleston,friends,plastic surgeon,Surgery,travel | 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 21, 2012 by Julie
I just got off the phone with my physicians assistant at the plastic surgeon’s office. I have an appointment on the 28th to HAVE MY DRAINS REMOVED! One of my best friends offered to drive me to Charleston to see the doctor. And though they don’t require me to go I could tell they were very happy that I was choosing to drive back to see them. It will be great to have them removed there in the office. It will also be great to be able to be “checked over” by the doctor and let them see how my healing is going. I am very grateful for my friend offering and we might be able to have another friend or two come along. We are going to make the most of it and spend one night there as well. I am so excited!
Category The Journey | Tags: charleston,drains,friends,plastic surgeon,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
February 12, 2012 by Julie
I have had a very hard day. I’ve been having adverse reactions to the pain medications that I have been taking. I feel so overstimulated and prickly and uneasy from the inside out. Thankfully we have decided to quit taking these meds and try something different tomorrow. It is an awful feeling…like when you have a limb fall asleep…that prickly feeling as it’s waking up…that’s what I feel all over my body when I take those medications. So goodbye Percocet and Lortab. May I never need you again in this lifetime.
In the middle of the day was a special treat. My sister paid for a local woman to come over and give mom and I pedicures here at the house. It was so sweet and relaxing for the most part. My pain meds caused the end to get a little weird because my senses were overstimulated and I could hardly breathe…everything smelled so chemically strong even though it wasn’t. I did sleep this afternoon and though that was good I still feel awful and can’t wait for these meds to be GONE from my body.
I felt as though the whole day was ending on such a sad and sour note. I was feeling down and very sorry for myself. It’s in these moments that I feel regret for choosing this path. I feel sad that I don’t have to be feeling this way but put myself in this situation. Let’s just put it this way…it’s not a good place.
And then tonight around 9 pm. I got a message in my facebook inbox. The person is my friend but not someone I regularly see or speak to. We had been more involved in each other’s lives before there were 6 children between us. Our paths have crossed from time to time but I did not know her story. Tonight she shared her story with me. She wrote about her mother’s breast cancer at age 45 and losing her father just a few years before that. Her mother survived that battle but has now been faced with another area they will biopsy. She had been talking to her mother about me and her mother decided to get the BRCA testing done. They are still waiting on results and then will decide on their path after those results are in. It was an amazing story but the line that really struck my heart was this.
“Following your story of empowerment has made me choose a path of empowerment over the path of ignorance that I have been on.”
I will sleep well tonight because my heart is full. Two women are DOING SOMETHING because I did something and wrote about it. Her sharing that with me today is helping me to keep on keeping on! It’s the sunrise on this dark day I’ve had today.
Category The Journey | Tags: biopsy,blessings,BRCA,breast cancer,decisions,family,fear,friends,medicine,pain,Sleep | No Comments
February 10, 2012 by Julie
I received an email from a friend this afternoon that brought me to tears. I hadn’t really given too much thought to how my friends were feeling during this whole journey. I have thought lots about my family but not specifically about my friends. She put her feelings into words so eloquently and it really made me think about the decisions that I make to include people in my hard times and rely on my friends. I thought this really needed to be shared.
“Thank you for being so willing to let your friends help out through this time, Julie. I know that it isn’t easy, but it’s been a gift to us in many ways. As people who love you, we could be feeling helpless and sad right now. But, by letting us bring meals to your family and help out where we can you’ve given us the gift of feeling useful. And, we worry for you…but we worry less because you’ve made us feel included in your journey and been honest about how you’re feeling. Less worry is always a gift. And, right now my kiddos are playing in their room, bringing food and cleaning the “houses” of their stuffed animals. Because the animals aren’t feeling well and “that’s just what friends do for each other, Mama.” I’m grateful that friendship, and both the offering of kindness and the very gracious acceptance of it are being so beautifully modeled by this circle of friends you’ve created. So thank you for those gifts…they’ve been unexpected blessings.”
Category The Journey | Tags: blessings,food,friends,planning | No Comments
February 6, 2012 by Julie
Yesterday I was discharged from the hospital. I was crying all morning because I was so scared to be away from all the “experts”. Noone checking my flaps hourly, monitoring my blood pressure, temp and having whatever drug I needed right on hand. My mom is an awesome caregiver but there was a certain comfort about being at the hospital.
But the best thing happened yesterday. Three of my best friends drove 5 hours just to come and visit with me for a while. They lifted my spirits when they were rock bottom. They helped my mom and I get moved over to our temporary Charleston house…a beautiful home on the marsh. Our friends have generously offered to let us stay here while I’m recovering and can’t leave Charleston. It was so great to have a distraction and have friends here to make me laugh and give my mom a little respite from having to do everything for me. Mrs. B, whose house we are at, cooked us a delicious dinner last night. She’s been such a wonderful hostess and made us feel so welcome. Mr. B and all the girls sat on the sofa and watched golf…I think it was the first time he had ever paid that much attention to what the golfers were wearing. Ha!
Last night, at bedtime, mom and I went into my bedroom and emptied my drains, changed my bra and put on fresh pajamas. I just cried and cried. I felt so broken and so disfunctional. My breasts are certainly bigger than what I wanted them to be and that made me feel disappointed. I have four drains coming out of my body which just makes you feel gross and weird. Around my breasts are so very bruised and sore. One of my nipples is probably going to blister and scab over…hopefully it will fully survive. But for now it’s all gross and blue from the radioactive dye I had injected to do the sentinel lymph node biopsy. My backside is crazy looking. You can still see all the sharpie on my skin from getting marked before surgery and then I have two long incision scars….LONG. And I had a little over a pound of fat removed from each upper gluteal area…so for now there is a bit of a divot. This is why there is a second and third stage to the surgery. It’s definitely not over and this is in no way the “finished” product. But no matter how many times you tell yourself that…you still feel mournful.
I tried to skype with my children last night and they were screaming and being loud and it was all too overwhelming for me. I had to close down the chat pretty quickly. Hopefully I can have a moment with the Mister soon to video chat just he and I. I miss him and just want to snuggle into his neck and have him stroke my hair. It’s good for me to be away from the kids because I think they would be more than I could handle this week. But my heart longs for him.
I think I’m going to have my mom take some progress pictures starting today. I think that will help me feel like I’m healing even when I don’t feel like it.
Oh….one more thing! Yesterday Dr. Craigie told me my pathology came back all clear…no cancer anywhere!
Category The Journey | Tags: blessings,breast cancer,charleston,family,fear,friends,mister,plastic surgeon | No Comments