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
October 1, 2012 by Julie Moon
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
September 25, 2012 by Julie Moon
“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”.
August 21, 2012 by Julie Moon
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.
August 20, 2012 by Julie Moon
It’s been a long time since I posted. Life has been busy. The kids are all back in school and we are back in our routine. Tomorrow the mister and I are headed to Charleston to meet with Dr. Craigie. I wanted to see him in person now that I am all healed up from stage 2. I plan to discuss our plan for finishing my nipple reconstruction as well as what he might be able to offer in regards to modifying the donor site. My back side has some very large concave areas (obviously) and hopefully they are able to do a lift to fill in that area some and make it not so obvious I had tissue removed. I have no idea what we will actually come away with tomorrow in regards to a plan. I am looking forward to it though. It brings me lots of peace to be able to see Dr. Craigie and know that I am making progress.
I feel really normal most days. I did yard work yesterday…lots of digging which I couldn’t have done a few months ago. I’m working again and that makes me very happy.
I wish I could stay in Charleston for more than a couple hours tomorrow…that place holds such a sacred place in my heart. I think I need an I “heart” Charleston teeshirt..hee hee!
June 10, 2012 by Julie Moon
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!
June 9, 2012 by Julie Moon
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.
June 2, 2012 by Julie Moon
Well I woke up this morning with a stomach bug. Seriously universe…give me a break! I am finally feeling a bit better but goodness can I please feel great soon. I have had insomnia the past three nights…I need no more of that either. I did however have an awesome reader, another of Dr. Craigie’s patients email me yesterday and gave me lots of encouraging messages. It was great. I do feel better about getting it all out there and now I can just move on and get to healing up. I also had another friend bring over some swimsuits for me to try on. It’s unusual for trying on swimsuits to be fun but I do have to say that was a good highlight of the day. There are some “perks” to all this surgery.
May 31, 2012 by Julie Moon
********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.
May 25, 2012 by Julie Moon
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.
April 2, 2012 by Julie Moon
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!