Sometimes I like to ignore the fact that I have a BRCA 1 mutation. The truth is that I actually forget. I sometimes even forget that I have had 4 operations to rid my body of any risk of breast cancer. I never forget when I’m undressed but fully clothed…I forget. I have felt brave, smart and proactive while dealing with my mastectomy and reconstruction. Now I must deal with the other risk factor that BRCA 1 carries. I must face the fact that I have a super high risk of ovarian cancer. And not only that I have a risk but there really isn’t any great system for monitoring ovarian cancer at this time. Most ovarian cancer is caught late and the risk is just too great for me. How incredibly sad would it be for me to do all the work I have to rid myself of breast cancer but be too scared to get my oopherectomy and then die from that. I could never forgive myself. So…April 1st…I have an appointment with my fabulous GYN to discuss my options. I have researched hormone replacement and yet I still feel a bit confused. I’m 36 and still have some time until menopause. I’m scared of my body getting out of control. I’m scared of gaining weight. I’m scared of my eyesight getting worse. I’m scared of my libido drying up. I’m scared of feeling old and looking old. Thankfully I’ve gotten over the fear of what it will cost because it always costs lots and I just pay it off as I can. I do not fear recovery because heaven knows I’ve recovered from worse and I have an amazing village on my side. Time to step up and get this done!
Posts Tagged ‘plans’
March 28, 2014 by Julie Moon
October 3, 2012 by Julie Moon
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.
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.
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!
March 29, 2012 by Julie Moon
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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 3, 2012 by Julie Moon
This photo is from March 1, 2012. One month exactly after my bilateral mastectomy and SGAP breast reconstruction. I have a 10 inch scar from each hip down into a V on my buttocks. Yes…TEN inches EACH. I have an oval shaped paddle of skin 5 inches wide on each breast that is a different color from the rest of my breast because it’s skin from my back side. It will be removed in the second stage of surgeries. I have an open wound on my left breast and a nipple that has not healed yet. That nipple will require reconstruction to look “normal” again. I have two very sore wounds on each hip that are still leaky and healing from having drains removed. But…do you know what I see when I look at that picture? I see ME! I see a woman who looks like she used to with a smile on her face. I see myself wearing clothes out of my closet that weren’t purchased specifically for surgery. I see a woman about to go to dinner with her family and enjoy a night out. I see a woman who doesn’t look broken. My body has undergone quite a bit of trauma. I am regaining mobility but I am still sore and weak. But my heart is happy that I am moving forward. I am seeing myself heal. I am working hard to make that happen and will continue to do so. Someday I believe I will feel together, whole and beautiful without my clothes on because I will heal. This picture gives me hope.
February 20, 2012 by Julie Moon
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.
February 8, 2012 by Julie Moon
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.
January 31, 2012 by Julie Moon
It was a beautiful day driving here to Charleston today. Sun shining down on us and clear skies…easy sailing. Baby girl has been sick for several days and today she was really happy and perky and feeling so much better. That was exactly what my soul needed. I was so worried about her. My mom and I went out to dinner tonight and these were my two fortunes. I thought they were pretty awesome. I think the hardest part about this whole experience is that it is a bit of a surprise…I don’t know exactly what to expect on Wednesday. I don’t know what it feels like to be in a hospital not giving birth. I haven’t ever been intubated. I haven’t ever had surgery (minus removing a couple wisdom teeth..hah). I certainly haven’t ever spent 5 days in a hospital. I’m definitely unsure of how my body will react to all the drugs. How quickly will I recover? Will it hurt lots? some? beyond belief? less than I could imagine? I don’t feel anxious but I feel calm, serene…I am peaceful but quiet.
I did get a call from the breast surgeon’s office today and they decided that based on my MRI from last week that they would like to do a sentinel lymph node biopsy on my left side during surgery on Wednesday. Just another little bump in the road but another thing that will give us more information and help me have a healthier future.
January 25, 2012 by Julie Moon
I am keeping myself really occupied making plans. I have a full weekend planned and then it all settles in. I wonder when I’ll get the nerve to pack my bag. I think I’m ready. All my labs came back today and I have the all clear. I still have to find myself a pair of slippers…ha!