brca1

Let's take a moment and all be thankful for BRCA

I want to take a moment during nap time today to catch you all up on my BRCA journey! So many of you have reached out to me letting me know how this story has impacted you. I have had so many encouraging notes and phone calls and prayers said on my behalf that I am thinking God used this to bless me in ways I never would have guessed. Not only did he spare me from the liklihood  of cancer, but he has blessed me with all kinds of love along the way. Love poured out to my family and I that I never would have experienced without the BRCA gene. So yes, I am THANKFUL for being BRCA positive. 

 

I am three months and 10 days past my preventative double mastectomy and I am very happy with the results and with my recovery. I feel like if we had to stop here, I would still be happy. I don't look like I did before and my breasts certainly don't feel like they did before, but after three months, it is getting to be pretty normal and I know that I could continue on with life like this if I had too. After all, as I have said from the beginning, my hope isn't in my boobs, it's in Christ Jesus, so let's press on. :)

However, tomorrow I have one final surgery, Lord willing, to finish up this process that started way back in February. I am going in for an outpatient surgery to remove my tissue expanders and replace them with my "permanent" silicone implants. (They are projected to last 10-20 years).

I am actually super excited about this surgery. The implants will not be hard and perfectly round like the tissue expanders. They will sit more naturally on my body and will be much softer to the touch. I think the worst thing about the expanders is how hard they are. They just feel unnatural and sometimes they are itchy and uncomfortable. Nothing unbearable, but I will be happy to trade them in! 

There were a couple of different options to consider for the implants and after talking extensively with my plastic surgeon about it (she is so patient and kind!) I decided to go with what they call the "gummy bear" implant. It is a tear drop shaped implant mad out of silicone, but if you were to cut it in half the silicone would stay in place, much like how the inside of a gummy bear would if you cut one of those in half... hence the nickname. I chose this one because I just happened to be expanded to the right size, and the doctor thinks it will fit my body shape well. It also has less of a rippling effect that normal silicone implants are known for. 

I will have to have an MRI one year after the implants are placed, and then once every three years after that to make sure that I haven't sprung a leak in one, in which case I will need to go in for another surgery similar to the one I am having tomorrow, to have it replaced. 

So there is your update! People have been asking how I am feeling about it all, and to be honest I haven't really thought about it much recently. A few months ago BRCA was on my mind a lot. But now, I have settled back into the natural rhythm of life around here and I seem to forget about it most days. Mostly, I feel thankful. Thankful for the experience, thankful for the grace, thankful for the outcome, thankful for the love poured out, thankful for the prayers lifted up and answered, thankful for the opportunity to speak grace to those in the situation and maybe offer a little peace and persecutive in the midst of a scary diagnosis. Thankful. 

 

A couple things for some of you who may be facing the decision to have a preventative mastectomy... 

I thought I would be uncomfortable for 3 months, I wasn't. Like I said, after about a month and a half I basically moved on and didn't think about it very much.

The hysterectomy and mastectomy went very well for me. I couldn't have asked for any better. Btu I know this is not everyone's story. Not everyone gets to keep their nipples, not everyone comes out without complications, not everyone recovers at the same pace. But there is grace for everyone, and enough for every distinct person and situation. What God is really after is our hearts, and so I want to encourage you to surrender to Jesus and place your life in his care. When we can see Jesus for who he is, God's son who laid down his life for us, and now make, intercessions for us before the Father; and when we see ourselves in light off all that he is, our temporary trials and afflictions fade... they really do. 


Again, THANK YOU for coming along side me during all of this. I will update in a few days on the outcome of this final BRCA surgery and the recovery! 

Blessings, 

Elizabeth Ann

Four weeks post mastectomy

Hi! I just realized I never followed up on the BRCA FAQs! Blurg! Sorry, that's me sometimes... most of the time.. completely forgetful. For example, towards the end of the school year when things were ramping up for end of the year activities, I forgot to pick my kids. Yes plural. Kids up from school. Twice in one week. Don't worry, they forgave me. 

Just like I eventually remembered to drive the 2 blocks to get my kids, I will remember to answer all of your BRCA questions! 

But for now I will update you on my progress! Today I am four weeks recovered from my preventative double mastectomy! Some new developments are 

 

1- I am back at work!

I am a stay-at-home mom of four kids ages 2-7. They spent three weeks in Dallas with the grands, and last Sunday they were released to come home! The Dude went back to work on Monday, so I was back to work as well. I was super ready to have them home, but maybe not so ready for their noise and mess. Isn't that just how it goes.

 

I'm like, please bring the hugs and kisses and cute drawings but go ahead and leave behind the wet clothes on the floor and dumped out shampoo bottles and the newfound freedom to tell me 'no' back a grandma's house. mkay? 

But they really have been pretty good and very helpful and not at all whiney about not getting to go anywhere all week. Probably because the grandmas kept them very busy! {I keep saying 'the grandmas' because both my mom and my mother-in-law live in the Dallas-Fort Worth area and were able to split up the three weeks amongst themselves. Plus, they are friends, so I didn't have to coordinate where and when the kids would be at each house. I basically just dropped them in Dallas and let them figure out the rest!} 

2- I tried out driving!

The doctor cleared me to drive at my last appointment, but we just hadn't gotten around to it yet. So this weekend I drove to the mattress store. Random, I know. And then I took two kids with me to small group with my church on Sunday night. Monday I drove quite a bit. To the doctor's office and back, and to my daughter's softball game and back, and today my arms were pretty sore, so I tried to take it a little easy.

3- I cooked dinner!

I have been unbelievably spoiled by my church family. They brought us meals clear up until last Friday. That is almost four straight weeks of homemade deliciousness. Seriously, the women at my church can cook. It was fun to be surprised every night as to what we were eating. I especially loved all the variety of dessert! At one point my counter looked like an all-you-can-eat dessert buffet. And so we did. 

Which explains the need for #4.

4- I started walking! 

I have a lovely walking trail about a block from my house, so Monday I got up early and walked the whole thing. It took me about 30 minutes and my back was pretty sore afterwards and I nearly lost an eye swatting off all the mosquitos, but I did it!! However, this extra activity contributed to my fatigue today I believe, so no walking today, just resting mostly.

So that's wat I can do, now I will talk about how I am healing up. This would be the point in the blog post where fathers, sons, and the especially squeamish might want to exit. Thanks for coming!!


Okay- now we can get into the real girl talk. haha. I have had several people ask me if I have any chest at all, or if I am completely flat. I will address this in the FAQs, but just to set the record straight, I do have a chest right now, similar in size to what I had before, but so much different. Right now I have implant expanders installed which help stretch out my pectoral muscle which is now on the outer edge of my chest as opposed to under it. The expanders sit really high, are rock, and don't move at all. I feel slightly like an engorged robot. 


My scars are healing up nicely. They are still quite dark, but I'm sure that will go away with time. My stitches has dissolved. I was gifted some frankincense essential oils which I have been using on the scars, and actually my entire breast to encourage healing. I'm pretty new to oils but I have some really knowledgeable and generous gals in my corner and they gave me several leading up the this surgery. 

My energy level is super low right now, not at all what it was before the hysterectomy. But I trying to remember that I have had two major surgeries in two months and I need to be patient and give myself time to heal. 


Thank you all for coming along on the journey with me - it means so much to me that you are here. I can't wait to see what 6 weeks post-op will look like!





one week post op update

On any given Monday morning in June you can find me with my four kids running around town, maybe to the store, or on a walk to a park or nature center. We would be making plans for lunch with friends and a quiet afternoon rest followed by a water fight in the back yard.

But last Monday, the first day of June, looked a little different. At least for me. My kids were still owning their warm summer morning, but this time with their grandma as I was wheeled into my second surgery following my BRCA diagnosis in November. 

 

 

Last Monday, one week ago today I was in the operating room for my bilateral mastectomy with reconstruction. Thankfully, this event had been saturated in prayers from my church family, and my family and friends. I felt calm and assured, and Cameron kept the mood light. I was thankful to be headed into the operation with a clear handle on what life would look like afterward, I felt prepared. 

About four hours later I woke up in my room. I don't remember much, slipping in and out of thick anesthesia. But as the minutes ticked by I remember my first coherent thoughts. 

-I can't breath. 

I could breath, but I could not take a deep breath. I was laying flat on my back with what felt like concrete blocks sitting on my chest.

-I could not move

This was not an exaggeration. I felt paralyzed, I could not even lift my arm off of the bed. I had oxygen in my nose to assist my shallow breathing and my nose was itching, but I could not lift my arm to scratch it. Later, a nurse came in and told me to roll over. Roll over??? Was she nuts? No. I told her sternly. I am NOT rolling over. Thankfully she didn't make me.

-I wanted to cry

But I didn't, because I knew it would hurt. 

About an hour passed, maybe a couple of hours, and I finally woke up enough to realize that I would probably be more comfortable if I could scoot up in the bed so that I could elevate my head and wouldn't be lying flat on my back anymore. But I still felt paralyzed. So two nurses came in and grabbed the four corners of the sheet I was laying on. I remember pleading with them to go slow when they counted to 3 and quickly slid me up the bed. I heard myself make the strangest pain-induced groan. And then it was over and I was instantly 100 x more comfortable. I'm thankful they didn't go slow. 

 

The next morning was remarkably different. My pain was now under control and I had function back in my arms. I could scratch my own nose!! Cameron sent rapid updates to family and friends on my progress. 

-She can lift her arms!

-She is sitting on the side of the bed!

-She just stood up!

-She took a walk around the room!

-We are going home after lunch.

At about 3pm Tuesday, we were back home and I was sitting in a borrowed electric recliner surrounded by pillows. I have been in this recliner for about 23 1/2 hours of every day for the past week. I have been on constant round-the-clock pain meds, Demerol and Ibuprofen, which have kept the pain at bay. Mostly what I experience is a strange numbness and a tight feeling. It feels like I am wrapped tightly in bandages, but there is nothing there. The expanders are big and hard, It feels like they half of them are in my armpits. I can feel pressure, but otherwise there is no feeling yet. I also have two drainage tubes, one on each side (I was expecting four, so this was a pleasant surprise). These tubes are annoying and totally gross if I think about them too long. 

I have far more function than I thought I would. I can take a shower and wash my own hair, I can open the refrigerator and put on my own socks, all things I thought would be impossible in the first week. I still need help with lifting things, reaching for things, and twisting things open like jars or door knobs. 

I have a follow-up appointment with my plastic surgeon today in which I am hoping to get my drains removed and to come back with a good progress report. I am happy to report today that the pathology reports on my breast tissue came back cancer free! Praise the Lord for his lovingkindness!

I want to close up this report with some encouragement. When I first was faced with BRCA, I confided in my closest friends and family, but hesitated to open up to the church, let alone the public. I didn't want people looking at me and thinking about all of my personal issues, like new boobs and menopause... but as I walked this road I knew it would be nearly impossible to face without being open and honest with the community of believers that I do life with on a daily basis. 

The Christian life is not meant to be lived in isolation. God designed it for fellowship. Fellowship with Him and fellowship with other believers. If I had kept quiet with my situation and foolishly, stubbornly, and pridefully tried to tackle this on my own, I would be far worse off. By opening myself up to the love and service of the church, I have experienced love and healing on a level I had not known before, in spirit, body, heart, and mind. 

Our church family has blessed us with meals, lawn care, essential oils, daily fun gifts to make me smile, and countless Bible verses to keep our eyes on Jesus. I can't imagine how this would have gone without them. 

So, if you are facing BRCA, or cancer, or any other challenge, open up to your church family. Live your life in community with other believers and be blessed. 


You can follow daily updates on Instagram @gracefullhome 

My deepest thanks to you for your prayers on my behalf and praise to God for his provision and lovingkindness. 



The anxiety and the peace

This is a post in the series about my BRCA gene. It gets a little graphic, so male readers be fore-warned! You can access the rest of my story via the green button on the sidebar. To God be the glory through this story. He is worthy!

I wouldn't really consider myself an anxious person. I am pretty go-with-the-flow. I don't feel like I always have to be in control. I like the feeling of freedom, fluidity, and change. I like routine too, but I'm perfectly fine if routine gets tossed out the window if a friend calls or if it is sunny outside. 

So I was caught a little off guard when I found myself losing sleep last week. I am 2 1/2 weeks past a major surgery, and 3 1/2 weeks closer to another one. When the fog cleared after the hysterectomy and I began to focus on the mastectomy I realized that I didn't really know much about what was going to occur. I have only met with my breast specialist and my plastic surgeon once. ONCE. This is a huge, life changing, body altering, looking process and I have only met the doctors once. This started to bother me. And the more I thought about it, about all that I didn't know, the more I was bothered.

My plastic surgeon was recommended to me by my breast surgeon. They will work as a team during the first surgery. The breast surgeon will take out all of the tissue, and then the plastic surgeon will come in and place the temporary implants. Then, over the course of several weeks I will go to the plastic surgeon to have the expander implants slowly filled with saline so that my skin and muscle can stretch to the right size. Then the plastic surgeon will go back in in an outpatient procedure to remove the expanders and to place my permanent (10 year) silocone implants.

When I first went in to see the plastic surgeon I didn't really love it. All of the girls in her office, while really nice were all in their 20s and very... perky. I have never really considered myself a plastic surgery kind of gal. Sure, there are things I don't like about my body, but I think that it is more of a self-image issue than and actual body issue that needs to be surgically altered. I don't know many people who have had breast implants. I like to dress modestly, and I want to model for my kids that God made me fearfully and wonderfully, and we 'get what we get and don't throw a fit' kind of attitude. I want to be healthy, but I don't have to be the hottest mom on he block. It's a heart issue for me. So surgically altering my body turned out to be a bigger deal to me emotionally than I expected it to be. I want someone to say to me that I will look natural, that I will be happy with the results, and the no one will be keen to the fact by just looking at me that I have fake boobs. But they won't say that because they can't guarantee that. And that annoyed me. Because no matter how much I tout about being cool and go with the flow, the fact is that I want to be in control of what happens to my body. I want to have the final say. And it turns out, I just don't.  

I became annoyed that my plastic surgeon wasn't acting like this was a big deal. My OB and my breast surgeon were both extremely compassionate and spent a lot of time with me in their offices explaining things and answering questions, but my plastic surgeon was pretty clear cut. She came in and sat in a low chair so her face was at my chest level. While she was examining and measuring me she had a little bit of a concerned look on her face. "Your beasts are different sizes", she said. "I can tell your babies favored nursing on your right." That's all true, they did. I'm not offended, just a little flushed. I've never really had anyone stare me down like that before. Except maybe the Dude, but he is more discreet. :) Throughout the course of the appointment I was told that I am a good candidate for nipple sparing surgery, but that she is not sure about the right side. She kept using the phrase "on the cusp." I wasn't really sure what she meant. 

I left that appointment feeling uneasy about the whole thing now. If I couldn't keep my nipples, did I want to go through with this? Why all of the sudden were my nipples so important to me? I thought I was cool with the whole body image thing. Apparently I am, buttony on my terms.

So I sat anxiously for a couple of weeks. Should I get a second opinion? Would it be worth it? Why didn't I like her? What is at the heart of my issue? I had so much peace about the hysterectomy, where did the peace go? This became a matter of prayer for me, and for those closest to me. 

Then God sent the experts. Women how have been through this journey. I spoke in one of the earlier posts about those who have gone before me to guide me into this process. Through random connections I was placed in contact with Debbie who had this same exact surgery 3 weeks ago, and Kristi who just finished the whole long process. She started last July, and had her final surgery in November. God has used these women to be an amazing source of knowledge and Godly encouragement. When I started blogging about my surgeries, I was hoping to open up my story to women who needed hope. Turns out that I am one of those women, and writing about my story has opened myself up to the encouragement of others willing to walk this journey with me. It really is amazing, this thing we call Christian community. 

Kristy also blogged about her journey, in great detail, which kind of freaked me out. [read it here] But I think God is honoring my request for more knowledge through her. I now have a pretty good idea of what I am going to go through. The other night I stayed up late reading all the details, balling and shaking by the light of my computer. Kristy was very honest and up front about the process and the pain. Lots of pain. But her writing is upbeat and encouraging, she had this quote on one of her posts.

 

That really helped me. I don't have to be a solid rock because I stand on the rock. My foundation is securely set on a loving Father. So I can break down every once in a while, He's got me, He's got this. 

Debbie lives right around the corner from me and gives me updates on what life looks like for her one week, two weeks, and three weeks out. She is gentle and kind and is quick to point me back to scripture when I start to derail. 

Here are some of the gems she has shared with me, as well as some that I have been mediating on myself. 

fear not, for I am with you;
be not dismayed, for I am your God;
I will strengthen you, I will help you,
I will uphold you with my righteous right hand.
— Isaiah 41:10
And I will lead the blind
in a way that they do not know,
in paths that they have not known
I will guide them.
I will turn the darkness before them into light,
the rough places into level ground.
These are the things I do,
and I do not forsake them.
— Isaiah 42:16
You keep him in perfect peace
whose mind is stayed on you,
because he trusts in you.
Trust in the LORD forever,
for the LORD GOD is an everlasting rock.
— Isaiah 26:3-4

There are lots of avenues to artificial temporary peace for the hard things in life, but only one way to true, everlasting peace that can withstand any storm, and that peace comes from Jesus.

I was comforted by the truth this week that he has suffered bodily mutilation, loneliness, despair, discomfort, humiliation, and disgrace. He knows what I am going through and he cares for me. 

I am trying to be intentional about spending my vast amount of down time in the Word, seeking truth and comfort from scripture. Renewing my mind and retuning my heart to praise him and thank him. Not only for his provision and lovingkindness in the hard stuff. But for the hard stuff. 

 

 

 

Amy's story {my BRCA story}

This is part of my story. Click here to read the first post. Click here to read the second post.

My gynecologist and my breast surgeon share a patient and they wanted me to know her story. We will call her Amy. 

Amy tested positive for BRCA when she was 35. Her mom had survived breast cancer a few years earlier, so Amy thought she had time to make a decision about surgery and opted to monitor the gene for a while. Every three months she went through some form of screening, ultrasound, mammogram, MRI. Amy stuck with al of her appointments and the doctors watched her closely. Just two years into the monitoring plan Amy's doctor found breast cancer on an MRI. Since the cancer wasn't visible by mammogram yet, they thought it was in early stages. When Amy went in to get her double mastectomy the doctor found that the cancer was in her lymph nodes, stage 4. Amy was in shock. 

She had made a mistake. She wished she could go back in time. She was mad at herself for saying no to the surgery that she had to have anyway, the surgery that would have prevented the cancer that she now faced. 

Through these events, Amy decided that she wanted to be a voice for other BRCA patients. She offered her phone number to anyone facing this decision. She urged the doctors to use her story as a cautionary tale. 

My doctors did use Amy's story to influence their recommendations for me. They told me about her, about how she is in chemotherapy treatments now, about how they are all mad at themselves for not doing all they could to prevent this from happening. They were all shocked at how quickly the cancer progressed and at how, with the most careful monitoring, it still snuck by them and started to spread.

On Monday morning I met Amy. As I was being prepared for surgery my sweet nurse told me that she had read my chart. 

"I want you to know that you are doing the right thing," she said. "I am also BRCA positive, but I opted to not do the surgeries. I was only 35 and I thought I had time to think about it. I thought that if I decided my age 40 I would be okay." She lifted her surgical cap off her head to reveal no hair. "As you can she," she continued, "I don't have any hair because I am going through chemotherapy right now." 

I was a little stunned to be meeting this girl, the one who I had influenced our decision. The one who went before me. I had used her story as an illustration of God's grace in my life and his loving hand guiding our decisions with grace and peace. I told my friends over and over that I felt grateful for all the people who had gone before me to help me make this difficult decision. My mom, and my aunt, heck even Angelina, and Amy, who I had never met but was brave enough to share her story.

I didn't really know what to say. As tears filled both of our eyes I took her hand and thanked her for sharing her story. She told me that I was being so brave, and she didn't have the strength to make the decision that I am making. I told her it is just by the grace of Jesus that I can do anything and that God has graciously brought us to this point. It is of no strength of my own. 


Amy squeezed my hand a led me back to surgery. The next time I woke up I was in my room with the Dude. I said in groggy, slurred speech, "Isn't that crazy about my nurse?" He said, "I am so glad we got to meet her."

I came home Tuesday and shared the story with my mom. I hadn't shared her name yet and my mom interjected, "is her name Amy?" "Yes, how did you know? 

Turns out, just days before my mom had met a lady wearing a relay for life shirt. As a cancer survivor my mom always takes notice of that kind of thing. She asked the story behind the shirt. The girl said she was wearing it for her friend and co-worker, Amy, who was battling breast cancer. Mom stopped right there and prayed for Amy.

For my thoughts are not your thoughts,
neither are your ways my ways, declares the LORD.
For as the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

“For as the rain and the snow come down from heaven
and do not return there but water the earth,
making it bring forth and sprout,
giving seed to the sower and bread to the eater,
so shall my word be that goes out from my mouth;
it shall not return to me empty,
but it shall accomplish that which I purpose,
and shall succeed in the thing for which I sent it.

“For you shall go out in joy
and be led forth in peace;
the mountains and the hills before you
shall break forth into singing,
and all the trees of the field shall clap their hands.


— Isaiah 55:8-12

Sometimes God's Word does not make sense with our own thoughts. We ought to go as deep as he calls us into the reckless, risky place of faith. If he is with you in that place, you are better off than being by yourself in a place where you stand on your own two feet. - Priscilla Shirer