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
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
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
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 8, 2012 by Julie
I remember my mom talking about strange feelings in her breasts after surgery. It feels like I have an itch or it feels like a tiny sharp pain from time to time. I can’t itch it though. I have no feeling in my breasts. She said it was the nerves starting to reconnect. I’ll have to research that more. It’s a very strange feeling. The only thing I can compare it to is like when you have your mouth numbed for a filling and you can’t feel your jaw/cheek…that’s what my breasts feel like all day. It is WEIRD!
I also have lots of brusing so that I can feel and it hurts and oddly enough pain medicine doesn’t really do anything for the bruising pain. I had an oversized rib (dr said it was cartilage) that was located on my ribs on my chest and the plastic surgeon had to shave that away before he could do any reattaching of vessels and arteries. It is no longer there….that is weird. I am pretty bruised in that area as well.
The other thing that hurts lots tonight is under my left arm where they removed the two sentinel lymph nodes. It is so very sore.
I’m sure these won’t be the last thing that is weird!
Category The Journey | Tags: biopsy,fear,nerves,numb,pain | No Comments
February 8, 2012 by Julie
My Recovery Home
Day 7…finishing up the first week of this new life. What a journey it has been already. Last night was a very hard night. Neither I or my mom slept very well at all. We both had some crazy dreams and I was hot and uncomfortable most of the night. My body feels so tight and swollen and I’m just so ready to be done with these drains.
I saw Dr. Craigie, the plastic surgeon, first today. He greeted my mom and I with hugs and a smile. He prescribed silvadene for my nipple that I may lose. If I do lose it he will be able to recreate something that looks similar…we knew this was one of the risks. That side was the side that got the radioactive dye for the sentinel node biopsy so I think it was harder to see during surgery and not damage. He also shorted my drain tubes for me so that I don’t have as long of tubes that can potentially get pulled on something. I will go back Friday to see the PA and she will remove my two breast drains. That will be great! We will head home to Athens after those are pulled on Friday.
After we left Dr. Craigie we filled our prescription and then drove over to see Dr. Baron, the breast surgeon. I had taken my pain meds as well as a zofran before I left Dr. Craigie’s office and the two of those combined really get me loopy. I feel like I’m floating all over the room and feel like I lose feeling in my legs. It was relaxing but definitely a strange feeling. He is so warm and compassionate and greeted my mom and I with hugs as well. I feel so taken care of by this team of doctors. He examined me and seemed a bit disappointed with the left nipple’s healing as well. I know he was hoping that they both would survive and look as they always have. He did feel great about everything else so far.
I am happy with my recovery so far. It’s not pretty for sure…but I know that’s all part of the journey.
We grabbed a late lunch and headed back to our recovery home. It’s so peaceful and quiet here. I need to gear myself up for heading back to my house which is full of loud children. I love them but it will be a big change for sure. I was out from 10-4 today and I’m very sore and tired now. I hope I sleep well tonight and really am able to relax and rest.
Category The Journey | Tags: charleston,family,fear,plans,plastic surgeon,recovery,scar,Sleep,surgeon,travel | 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
January 2, 2012 by Julie
January 2012…it’s go time! It’s the new year and that means the ball has dropped and it’s officially rolling. This week I get the kids back in school and I head out to Tennessee to do a little organizing work. Getting a client all settled into her new home in Nashville. I’m looking forward to some immersion in my work and also testing out the waters of me being gone and others taking care of my three little moons while I’m away. That is definitely the part of this journey that has me the most nervous. Next week is a big week. Monday and probably Wednesday too I have all my preop to get done. I have orders for bloodwork, metabolic profile, urinalysis, chest xray and EKG. I then have an MRI on Friday in Atlanta. I need all the prayers one can muster for all of these tests to come back perfect. I’m a little stressed about all the finances of this beginning. *deep cleansing breath* I think while I’m in Nashville I’m going to ask my friend if we can do a little yoga in the morning each day…hoping that I can add that to my daily routine this year and that it can center me the way it did when I was preparing for childbirth.
I don’t FEEL scared but every time I write about this stuff I start crying. I can’t pinpoint exactly what it is that I’m feeling. I feel a little detached from everything right now….my friendships, my relationship with God, the Mister. It’s funny the person I feel the most connected to right now is the big girl. She’s growing up so much right now and I think I’m really just enjoying her company so much…it’s uncomplicated and just so easy with her these days. I am going to REALLY miss her while I’m gone.
Category The Journey | Tags: big girl,breast cancer,charleston,expenses,family,fear,friends,God,insurance,mister | No Comments
December 22, 2011 by Julie
I had a friend stop me at baby girl’s school last week to tell me about her sister who was just diagnosed with breast cancer. She’s got four children, no family history and she’s young…maybe 40. She was nursing her 8 month old and found a lump.
I had another friend stop me at church to tell me that she finally went and had her first mammogram. She’d been putting it off and decided to go and do it after hearing my story.
These are the reminders that help me when I’m up late at night feeling nauseous that in only 42 days I will be changing my life in an intense way. Christmas has been so busy it’s almost hard to even think about it yet. Today I had to call and schedule a couple of things that must be done before surgery and it hit me hard. I know this is right but man is it just MIND BLOWING all at the same time.
Category The Journey | Tags: breast cancer,decisions,fear,friends | No Comments
December 10, 2011 by Julie
We had all the bills come in today for Scarlett’s broken foot in October…xrays are not cheap. That on top of the cost of my biopsy, mammogram, ultrasound. We still have so many medical bills from this year, dental bills, etc…and the funniest part is that we were really all well all year. So today as we were discussing the cost of my surgery it came up that maybe we should postpone the surgery another year. I really have no idea how we are going to work another $5000+ into our budget for 2012. So very grateful that we have health insurance and that this is even an option so that I am not facing a $200,000+ cost…but wow…still a lot to swallow. I’m feeling really overwhelmed by the cost.
Category The Journey | Tags: bills,biopsy,decisions,expenses,fear,finances,insurance,waiting | No Comments