Category Archives: BRCA

DIEP Recovery – 1 Year Later

Hi friends, I meant to post this relatively soon after my surgery (I started writing it at 11 weeks out), but life has been good and busy. So here I am, over a year post-op from my Prophylactic Bilateral Mastectomy (skin sparing, non nipple sparing) with immediate DIEP Flap reconstruction, trying to remember everything that happened. Ha!

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PRMA is the best!

I had my surgery at PRMA in San Antonio and my experience there was wonderful; if you’re considering this type of surgery I highly recommend them.

I have to say that my recovery was not nearly as bad as I had anticipated. Everyone’s experience is different and we all heal at different rates, but I wanted to post about my experience to help other ladies facing this surgery have a little bit better understanding of what they might expect. This will be a ‘healing journal’ of sorts so it might be utterly boring to the average reader. Or you might also be a total weirdo who finds this stuff fascinating…but who am I to judge?

Pre-surgery anxiety is no fun so I wanted to share something that helped me combat it. I reminded myself over and over that all I had to do was ‘just get to the anesthesia’. Reminding myself that I wouldn’t be awake for the surgery or have any part in controlling the outcome was calming. The only requirement on me for surgery day was to just show up = oddly comforting.

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Waiting for the good stuff to kick in.

My husband can’t remember how long my surgery was, but it usually takes 6-9 hours. His Aunt Dee Ann and Uncle Chuck came all the way to Texas from Oklahoma to spend time with us and sit with Josh during the surgery. It was such a comfort to me that Josh wouldn’t be sitting in the waiting room by himself while I was in surgery.

My first memory from my hospital room was waking up as a nurse was opening up my surgical bra to Doppler my breasts. I was like, ‘Hey girl hey; we just met!’ Actually, I was pretty groggy and nurse Michelle was really tender and apologetic about the awkward awakening. There were light-up oxygen monitors attached to my breasts that the nurses checked regularly to make sure my new girls were getting enough oxygen (this was the cause of much joking and giggling between Josh and me.) And every hour on that first day/night of recovery Michelle would use the Doppler machine to listen to each breast to make sure that blood was flowing. It was actually pretty cool. After the first night the Doppler machine was brought out less frequently, but was still a regular part of the day. I had a lot of different nurses the three days I was in the hospital, but they were all incredibly caring and gentle with me. I’ve also never experienced so many people telling me how good my breasts look. 😛

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So many jokes.

That first day when Michelle came in to check on me I took a peek and was really happy with what I could see, but I got nauseated when I would try to peek at my stitches, so I just avoided looking for a while. Apparently, nausea is a normal occurance post-surgery. I had an anti nausea patch behind my ear that helped, but it also made my eyesight kind of wonky which is a normal side effect. It felt like my eyes were trying to focus on two separate things at once. Besides the patch, my meds consisted of 2 extra strength Tylenol, Gabapentin and Celebrex for nerve pain, baby aspirin to reduce the risk of blood clots and Colace. Luckily I didn’t need any narcotics for the pain and was pleasantly surprised by how good I felt. My chest was super sore and my stomach was incredibly tight, but I would classify it as intense discomfort as opposed to pain.

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So pretty.

I was looking like a beauty queen in my green hospital gown and bright yellow socks, surgical bra, surgical binder and compression stockings on my legs to reduce the risk of blood clots. Hot stuff guys, hot stuff. My plastic surgeon’s office, PRMA, provided me with my surgical bra; if yours does not I recommend getting one with holes under the arms for your surgical drains to poke through. I had one drain in each breast and one in my left side at the edge of my stomach scar –(some people have two stomach drains). The surgical drains are used to remove fluid from the surgical sight; the fluid is collected in a bulb attached to the drain. My nurses stripped the drains (basically pushing the fluid out of the tube into the bulb) every day and would record the amount of fluid I was outputting (once my fluid levels were low enough my drains were removed). Sorry to be the bearer of bad news, but the drains are the literal worst. They are in the way and can cause pain where they are stitched into your skin. They are necessary, but I did a little happy dance when I had them removed. My breast drains were removed at about 8 days post-op and my stomach drain was removed at home in Missouri about a week after we returned home. I was worried the drain removal would hurt, but it was absolutely painless.

The first day after surgery I had to go for a walk up and down the hospital floor. The first time out of bed was interesting. The nurse had to unplug me from all of my monitors. I needed help getting out of bed because my stomach was like, “Nope, nope, nope.” But we made it happen and I got to stand up…sort of. Ok, I was hunched over like Quasimodo because my stomach was so tight, but I managed. I shuffled along the hallway at granny speed and tried to make my nurse laugh by shouting, “Coming through!!” I only made it halfway down the hall before needing to come back. I was tired, winded, and my back was killing me, but I was pretty proud of myself for getting moving so quickly, even if I didn’t leave skid marks on the hospital floor. The next 2 days I walked 3 times each day and each time got easier and easier. My stomach started loosening a tad so I was able to stand a bit straighter and my granny shuffle got a bit speedier. I was still exhausted and winded after each walk, but I could see the progress even if it was miniscule.

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Bra, binder, drains, hunchback and super tired face.

On day 3 in the hospital I was able to take a shower. My nurse showed Josh and I how to properly shower so that my stitches weren’t affected by the water stream. I won’t go into all the details, but you really haven’t lived if you haven’t showered wearing a surgical bra. I also fell madly in love with Josh all over again. I was totally dependent on him to care for me and he was incredible. Taking a shower proved to be completely exhausting. Getting undressed, taking the shower, drying off, getting dressed again…oh my gosh, I was completely drained afterward, but Josh took everything in stride.

After day 3 I was released from the hospital. We had traveled to San Antonio for the surgery and I wouldn’t be released to go home for another 5 or so days so we packed up and headed to our hotel in Austin that Josh’s Gma had so generously acquired for us.

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On the roof of our Austin hotel.

 

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Enjoying the view while I recovered.

That week I still walked partially bent over and my back was pretty sore, but I was walking at a more regular pace. We went for regular walks around our hotel, but I would get winded easily. I was able to brush my own hair, but couldn’t raise my arms very high. I was taking my meds regularly and was not in any pain, but I would wear out very easily. Showers were still exhausting so I took my time and rested afterward. I’m not going to beat around the bush on this, my stitches looked super knarly and I had a very hard time looking at them at first. On day 3 in Austin, after getting out of the shower and looking at my stitches for the first time I had a pretty intense moment of despair. I felt like I had just allowed myself to be mutilated and had some pretty dark thoughts; I felt like I looked like one of the victims from the TV show ‘Criminal Minds’. My doctor had warned me that experiencing despair and depression after this type of surgery is common, so I laid down and took a nap and afterward I was so much better. Who doesn’t love a good nap?! Afterwards I didn’t experience another bout of despair and none of the dark thoughts returned. My drains were super annoying, but when my two breast drains were removed it felt incredible!

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Wearing mens undershirts underneath the bra and binder made things a lot more comfy. Cut off the sleeves and cut up the middle front so it’s ‘easy on’.

I had my post-op appointment 9 days post-op and we were given the go ahead to go home. Riding in the car back to Missouri was not bad at all. We got out and walked every few hours, but I wasn’t in any pain other than slight nerve pain in my breasts where my nerves were ‘waking up’.

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Once I was home I had a lot of help while I recovered. My Aunts Renee and Enid each came for a week and my sister and her girls spent a week with us as well. It was frustrating to just sit around and heal while everyone else cooked meals, gave the boys baths and played outside, but it was also such a wonderful time of peace and relaxing. It seemed like each day my range of motion improved and soon I was able to lift my arms over my head and take my first shower all by myself!! Woooo!!

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Fun with cousins.

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Aunt Renee teaching the boys how to drive.

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My sister taking care of my dudes.

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Aunt Enid taking care of me.

I am now over a year post-op and life is back to normal. I look great and feel great. I still have some numbness and tenderness across my scar on my stomach, but no pain and I have regained probably around 95% feeling in my breasts (miscrosurgery is incredible!)

I hope you’ve learned a little about what a hospital recovery from PBM with DIEP Flap is like. Again, everyone’s experience will be different. It was definitely trying and exhausting, but I’m so glad I went through with it. I’m very happy with my results and my recovery has been pretty incredible. I hope this can be an encouragement to those of you considering the DIEP Flap procedure, offer some answers, and maybe put your mind at ease.

I also wanted to let you know what I wore while I was recovering. I had major anxiety about clothing because it was so hard to find summer shirts that buttoned up the front. I ended up wearing athletic shorts and Y back tank tops from Wal-mart. The armholes in the Y back tanks were large enough that I could get them on without needing to stretch out my arms and they were so nice and cool in the Texas heat.

 

This is the wedge pillow I used to sleep on. It was perfect; no recliner needed. I used this and a few regular pillows under my arms to keep them elevated as I slept.

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And you will want some sort of pillows to put under your arms to keep your arms from putting pressure on you breasts.

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The heart pillows were my favorite.

I’m glad you’ve stuck with me this far. If you have any questions I’m more than happy to answer.

BRCA Journey – I’ve gotta get this off my chest.

For those of you who are reading about this fabulous journey for the first time, you can start from the start here. But here’s a quick recap just in case. I have a fairly rare (but not rare enough) genetic mutation called BRCA1 that significantly increases my chances of getting breast, ovarian, peritoneal, and colon CANCER. BLERG! Because getting cancer really sucks, I’ve decided to, as an incredibly large number of women with this mutation also decide to do, have preventative surgeries to exponentially decrease my chances of getting cancer. I have already had a full hysterectomy, which blasted those conniving ovaries to bits. (Guys, I talk about hysterectomies waaaay too much for a 36 year old. Sorry.)

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So, now that I don’t feel like my ovaries are a ticking time bomb, I can move on to the the other part. In June of this year I’ll be having a prophylactic (that’s a high falutin’ term that means ‘preventative’) bilatereal (double) mastectomy (PBM) with immediate reconstruction.

 

Before I go into all the details I just want to address a few things:

First off, this is an intense procedure. I’m essentially having a voluntary amputation. It sounds incredibly scary and…well, it is. It’s terribly scary. Josh and I have not taken this decision lightly. But my risk of getting breast cancer is so much higher than the general population that it doesn’t make sense for me to not get the surgery. Chances are, I’d end up getting a mastectomy someday anyway, but with the added bonus of chemo. (Tell her what she’s won Carl!) No thanks!! I know that a lot of you probably fall in the ‘why not just wait and see’ category. And that’s a totally valid decision; many women opt for monitoring. But I don’t want to have mammograms and MRIs every 6 months and I don’t want the stress of waiting for my results. I also don’t ever want cancer; even with the advances in medicine these days it’s not as simple as just having a few rounds of chemo and being done with it. The ladies in my BRCA facebook group who were diagnosed with cancer, because they did not have the luxury of prevention, consistently and aggressively admonish the rest of us to do all we can to prevent. Cancer is a beast and getting it is not an option for me.

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Josh and I don’t make decisions based on fear. Yes, this is scary; no, I will not let fear direct my steps. We are led by peace and logic and the Holy Spirit.

And friends, I believe in miracles and the power of prayer. I love Jesus. I know that God’s plans for me are for abundant life. And I don’t believe that any of what I’m doing takes away from God’s ability to show up in my life in incredible and miraculous ways. God is right here beside me in all of this, leading me with peace, calming my anxiety, reminding me of his promises. But I refuse to believe that I have no responsibility in what happens to me in my life. I believe that we are called to ‘tend our fields’. We can’t sit on our hands and hope for a harvest when we haven’t done the work that we CAN do. We get up and prepare the soil, plant our crops, pull the weeds, tend the fields and praise God for the miracle of sunshine and rain. And if we CAN’T do the work we pray that God will provide what we need. God has provided me with excellent doctors who are incredibly skilled in microsurgery, He’s providing us with the finances to pay for the surgery, He’s led me to some pretty incredible friends who are praying for me and going out of their way to help me, and he’s definitely had a hand in my marrying the most incredible man alive. Having these surgeries is me doing the work that I CAN do; the rest is up to God and I have faith that he won’t fail me.

So here we are. The date is set. I’ll be having a double mastectomy with immediate DIEP Flap reconstruction this summer.

What’s DIEP Flap? I’m so glad you asked!

DIEP stands for Deep Inferior Epigastric Perforator. (There I go using them college words again). My doctors will use skin and fat from my stomach to reconstruct natural looking and feeling breasts. Microsurgery will be used to connect blood vessels and Wham! Bam! Thank you ma’am! I’ll be good as new…sort of. Josh and I will be traveling to a Plastic Surgery center in San Antonio, Texas called PRMA to have the procedure done. We chose PRMA because they are one of the leading breast reconstruction practices in the world. They have performed over 8,500 breast reconstructions, including over 7,000 microsurgical flap procedures. Basically, they’re the business at this business. And my business deserves the best. If you’d like to learn more about PRMA or the different forms of reconstruction you can check that out HERE.

Here’s the details:

We have to be in San Antonio 4 days prior to surgery for a consult. We will drive to Waco the day before the consult so we can hang with Chip and JoJo and hopefully eat at their new restaurant. (Eeeeeeek!).

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The next day we will be in San Antonio for the consult and then Josh and I will have 3 free days to explore the city before surgery. We’re making the best of a sucky situation and will be making a vacation of it.

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I’ll be in the hospital for 3 days after surgery and then we will move to a rental house for around 10 days until my drains can come out and I’ve had a post-op appointment.

Then we’ll head home for the remainder of my recovery and hopefully lots of people will send me cheesecake and funny mastectomy joke messages.

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1) If you will keep us in prayer during the month of June, that would be incredible. I would be lying if I said that I was 100% hunky dory with all of this. It’s scary; the surgery is looooong and I’ll forever be changed afterward. Our entire family will be effected by this and some days I still question whether this is the right thing to do. But then I think about my boys and how I want to see them grow up and how I want to be around to love on my grand babies and all of a sudden I’m cool like Tone-loc.

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2) Because we’ll be in San Antonio for so long we are trying to be as frugal as possible. If any of our friends live in the area and can house us for the first 4 nights before surgery we would be incredibly grateful. We know that’s a lot ask, so no pressure.

3) If anyone knows of a good, affordable place to stay in San Antonio please let us know. We’ll need first floor (me and stairs will not be friends at this point in time), free WIFI (Josh will need to work remotely while he moonlights as my man servant) preferably with a kitchen and a comfortable recliner (I’ll have to sleep sitting up for a while).

4) If any of our Texas friends would like to come see us while we are there please let us know! We could meet up with you before the surgery, you could sit with Josh for a little bit during the surgery (it’s 6-12 hours) and keep him company, or just come for a visit while I’m recovering (apparently I’m really funny when I’m all drugged up and I have absolutely no shame so…).

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5) If it’s on your heart please check up on Josh during this time. He’ll be on his own caring for me and that’s a lot to put on one person. I can be really demanding and high maintenance. I also won’t be able to wash my own hair for a while, so I’ll probably be grumpy…poor guy.

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We love you friends; it would be so much harder going through this without your support. Thanks again for reading, and praying, and caring for our little family. We are beyond blessed.

BRCA Journey Part 3

Hi friends,

I’ve been getting some requests for updates so here it is, because, who doesn’t love a good hysterectomy story?! Am I right? If you haven’t read my previous posts regarding my BRCA1 status you can start at the start here and here.

I had my BSO (bilateral salpingo-oophorectomy (say that 3xs real fast)) with complete hysterectomy in early July. Josh and I drove the 3 hours to St. Louis the night before and stayed in a hotel so we would be fresh for our 5:30am appointment. Dad and Donna wrangled the kids at home while we ate loads of sushi and enjoyed a nice walk around the city. Guys, did you know you can use surgery as an excuse for a date night?! I had no idea. I’ve currently scheduled 15 more surgeries for this year…just kidding…it is tempting though…

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Look at us out with no kids!!!

This might seem a little silly, but I asked Josh and Bear to buy me a stuffed puppy dog to offer me some comfort at the hospital. My mom had a beanie baby dog she took with her to surgery and chemo appointments that she appropriately named Toughie. It just seemed fitting that I have my own ‘Toughie’ as I go along on this wild ride. Big Brother picked him out and named him Spokey and I love him.

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This was taken in Pre-op while we waited for the Doctor. Josh and I made a ton of really inappropriate jokes regarding the surgery. I can’t share them with you, but trust me, we’re real comedians.

Surgery went great. My doctors were incredible and I had the most wonderful nurse. Guys, a good nurse is a treasure – I think that’s scripture right? Well, it should be. Dr. Easley said that everything went well and the biopsy they did, as part of their standard procedure for BRCA patients, came out clean. I did have a couple of cysts, but ‘PEW! PEW! PEW!’ (That’s me pretending to blast them away with my lazer gun) those jerks don’t get a chance to turn into cancer.

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As I recovered at the hospital I had a crazy case of the shakes as the anesthesia wore off and severe dry mouth. I drank a ton of water, peed (that’s a very important moment apparently) and then I was released to come home. Easy peasy lemon squeezy. The 3 hour drive wasn’t too bad until we got to the gravel road leading to our house…it was a bit bumpy for my liking.

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Before

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After. I don’t know what was in that IV but it was some gooooood stuff.

The first few days I needed help getting in and out of bed and I slept a TON. I kept to my pain med schedule, but after about a week I dropped the stronger stuff and only needed Ibuprofen and soon I was getting around pretty good. Recovery was tricky because I felt so good by week 3 that I started to do too much around the house and had to have Josh rush home from work early due to some sharp pain. But all was well; the nurse at my doctor’s office said these pains were totally normal. Still, I slowed it down a bit. I’m super thankful for my Dad, Donna, Josh and my Aunt Renee who all showed up in a big way to help this momma out. A few gals from my Mom’s group also brought by some delicious meals to bless our family. I can’t thank you ladies enough for taking such good care of us! And I’m convinced that the cheesecake my Aunt Enid sent helped tremendously in my recovery!

So…now what? I have at least one more surgery to go, my Prophylactic Bilateral Mastectomy (PBM) that I have tentatively set for mid June of 2018 (I’ll do another post soon explaining that in more detail). I’ve just had a mammogram that came back ‘all clear’ and I will need to have another one done before my PBM. (If I opted to not have the PBM I would need to monitor like a hawk; alternating mammograms and MRIs every 6 months for the rest of my life…no thanks.) I am calling a Dr. soon to set up my first colonoscopy…insert whatever joke you’re thinking of here…I’ll probably have to have one yearly to monitor for colon cancer. Sounds like a real pain in the butt (I’m sorry!! I had to!!) I will also need to see a dermatologist every year to check for melanoma. As awful as this all sounds I’m beyond grateful that I know that I have this gene mutation and that I have this opportunity to be proactive.

I am also super thankful for a Facebook group I’m part of called BRCA Sisterhood. This group has been such a lifesaver for me in terms of becoming more educated on what to expect during surgery, how to navigate life afterward and what areas to be more proactive in. I’ll offer some info below for anyone new to this journey in hopes that it will offer some direction or help. The FORCE website is also a great place to get more info !

Early Menopause : so far so good. I am having hot flashes, but I have been lucky in that they are not bad. Some women suffer terribly from them, but mine are manageable. I bought a fun hand fan to take with me when I’m out and about so I at least have a little relief. It makes me look really cool.

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Exercise: We bought a treadmill in March and I set a goal of walking a mile a day. Realistically I walk 3-5 miles a week, but I increased the incline periodically and was at a 9 incline before surgery. I believe that being a bit more fit was super beneficial in my recovery. Exercising for 30 minutes a day is a great way to stay healthy and keep cancer at bay. I’m back on the treadmill and am working my way back up to a 9.

Scars: I now have 5 small scars in a rainbow on my upper abdomen where the procedure was done (Let me know if you would like to see pics and I’ll PM you). I’m not bothered by scars, but some women are. I’ve seen other women have this surgery with less scarring (the belly button is used) so talk to your Dr. about your options if you are considering this surgery.

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Bone & Heart Health: Having ovaries removed at a young age can increase bone loss and lead to osteoporosis and can also increase risk for heart disease. A lot of women opt to have hormone replacement therapy (HRT) to offset this risk as well as keep menopause at bay. For now, I have opted to not receive HRT because it can increase my risk for breast cancer. I might decide to take HRT after I have my PBM, but for now it is off the table. So what do I do in the meantime?

Every year I will meet with my PCP to have blood work done to check my calcium levels and heart health. I will be taking vitamins and supplements to help strengthen my system to stay on top of my overall health. Here’s what I’m taking:

Women’s Multivitamin

Lysine: strengthens immune system, helps in the absorption of calcium, can help reduce hot flashes.

Black Cohosh: can help reduce hot flashes and aid in…uh…dryness.

Vitamin D3: Per my blood work I was a bit low in vitamin D3 and my multivitamin doesn’t offer as much as my Dr. prescribed.

DIM: Promotes healthy hormonal balance and produces good estrogen and decreases bad estrogen

Melatonin: Y’all this has been a God send! I haven’t slept well since I was pregnant with Bear and I’ve gotten some really great sleep since starting on this.

Fish Oil: promotes heart health

Almond Milk: I’m drinking some every day in a super yummy smoothie to boost my calcium consumption.

Peppermint Essential Oil: I’ve started applying a drop to the inside of my ankles daily to help with hot flashes and it seems to be working. I didn’t have one hot flash last night!! We’ll see if it continues to work.

Well, that’s about it for now. As always, you guys are the best. There are a lot of women going through this who just don’t have much support or encouragement. I’m so blessed by you all. Your prayers, texts, gifts and you just reading this means the world to me. Thanks for going on this journey with me friends! And if you have any questions please don’t hesitate to ask!!!!

BRCA Journey Part 2

Friends, I am so overwhelmed by your love and support for me and my little family. I’ve always known that I have the best friends in the world and you just keep confirming it over and over. Thank you for all of your offers to help when we need it, phone calls to check in on us, texts, gifts and prayers. I love you more than I could ever say.


So, here’s the rundown.

On Thursday morning at 6:30am I opened the car door to start on my way to St. Louis. My dreamboat of a husband surprised me with a birthday/road-trip basket in the front seat complete with snacks for the journey, hand written bday card, and FitBit. 

Swoon! He’s a keeper. I had to run back inside and give him another smooch before leaving.
 


I popped in my favorite ‘Jimmy Eat World’ mix and headed toward St. Louis for my first doctor’s appointment. I stopped in Rolla to pick up my Aunt Renee (my Mom’s sister) and we zipped on up to the Women’s Oncology Center. (Thanks for coming along Renee! It was so great spending time with you and meant a ton having you there.)

We met with Dr. Kevin Easley, a Gynecological Oncologist, and discussed my BRCA1 status and desire to start preventative procedures. Dr. Easley was great; I felt very comfortable with him and his entire staff. He jokingly deemed me a ‘boring’ patient (a good thing!) and went over my options.

  • Have tubes and ovaries removed only (salpingo-oophorectomy). There are some possible pros to electing to choose just this procedure, but a major con is that it leaves a higher risk for peritoneal cancer (cancer of the stomach lining).

  • Have a complete hysterectomy (removal of uterus & cervix) as well as a salpingo-oophorectomy.


To reduce my risk as much as possible I have opted for a complete hysterectomy with salpingo-oophorectomy. Dr. Easley went over the entire surgical procedure which will be done laparoscopically and will most likely be an out patient procedure. A biopsy will be done on what is removed while I am still under anesthesia to verify that no cancer is present. We don’t anticipate finding any cancer; the biopsy is just standard procedure. If cancer is found in a patient during surgery the Dr. can immediately begin a more intense treatment immediately while the patient is still under anesthesia.

So, my surgery date is set for late June. I could have the procedure done earlier, but we have a family trip set for April. Also, in early June my dad is getting married to his sweetheart, Donna, and I do not want to miss out on wedding planning!! Josh will be taking a week off for the surgery and Dad and Donna will be spending their 2nd honeymoon taking care of me and my boys (so romantic!). Knowing that PapaDonna (as the 3 year old calls them) will be here during this time puts me at so much ease. We are so incredibly blessed by them.

My next step is to find a breast surgeon to discuss the possibility of a double mastectomy. This is a little bit trickier for me as the surgery and recovery is much more intense and there are so many options for reconstruction. It’s a bit overwhelming, but I believe God will guide us through all of this just as He does in everything else.

Josh and I have complete and total trust in God throughout all of this. Our faith is a huge part of keeping us grounded and in helping us not let fear overcome us. We don’t believe in making decisions based on fear, but we do believe that God has given us wisdom to help guide us. We don’t have all of the answers and we haven’t made all of the decisions yet, but we have total peace about being proactive. We’ll do our part and trust God for the rest.

If you feel led to, please join us in praying for the following:

  • An uncomplicated, boring surgery with a speedy recovery.
  • Wisdom and peace for decisions we will be making in the future.

  • That this guy will pick up on potty training quickly and with ease. Eeeeek! We’ve just started and he’s not much of a fan. Hopefully he’ll have it locked down by June.

  • That this guy will be weaned from nursing soon. I’ve been “trying” to wean him for a while, but he’s my last baby. Momma is having a harder time with it than he is.
  • My biggest concern is how my body will be affected after surgery. I’ll be thrown into menopause, but I don’t know what that will look like for me. It’s harder on some women than others. Please pray that I adjust easily.


***If you are concerned that your family might have a BRCA1 or BRCA2 mutation the best thing to do is get test. You can call the cancer center at your local hospital and ask if they offer testing or call an oncology center in your area. If you live in the South Eastern Missouri area The Women’s Oncology Center offers BRCA testing and genetic counselors are available to go over your results with you.***

I can’t say enough how much we appreciate you all and all of the encouragement you’ve given us. We are just the luckiest.

BRCA Journey Part 1

On July 4th 1998 I stood on the front porch of my parent’s house in Maysville, KY and cut off my 46 year old mother’s thinning hair. Earlier that year Mom had been diagnosed with stage 3 ovarian cancer. She fought hard for the next 10 years, taking every chemo treatment available until the treatments ran out along with Mom’s time here on earth.

Mom's haircut

I’m not sure what spurred it on, a nudge from her doctors or just her own curiosity, but Mom started researching our family history of cancer and found that her father’s side of the family was drenched in breast cancer, ovarian cancer and stomach cancer (most likely ovarian as well). Years later her half sister, Sandy, was also diagnosed.

In 2002 Mom underwent BRCA genetic testing to see if our family’s history of cancer was indeed genetic. Mom tested positive for two gene mutations confirming her genetic predisposition to cancer. Because Mom was a carrier of the mutations, there was a 50% chance that my sister and I were also carriers. We were both tested; my big sis got the luck of the draw and tested negative (yaaaay!) while I tested positive for one of Mom’s mutations (booooo!).20161124_133441.jpg

I want it to be noted that I don’t hold any negative feelings toward my sister for stealing all the good non-cancer genes. Sure she also stole the ‘I look 15 years younger than I actually am’ genes and the ‘I can multitask like a bad mamma-jamma’ genes, but I’m taller, I don’t sunburn, and eating ice cream has never thrown me into an asthmatic attack so… I call it evens. Besides, we both got the ‘derpy’ genes.

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I’m sure you’re thinking, “Afton, all of the Mutants I know have really incredible super powers. Does your mutation give you super strength or the ability to over consume pizza and still fight crime?” Sadly, the answer is no. While my pizza consumption is on the higher end for someone my size I have not acquired any super powers. I guess you could consider me more of a ‘Rogue’, because let’s be honest, her mutation sucks too.

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What the BRCA gene mutation DOES give me is:

A 55-65% chance of developing breast cancer by age 70.

A 35-70% chance of developing ovarian cancer by age 70

*Men who carry the mutations are also at a higher risk for breast cancer and prostate cancer.

Guys, I KNOW!! I’m totally being a Debbie Downer,

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but I want you to know this stuff because:

A) If your family tree has a crazy amount of breast, ovarian and or prostate cancer, you might have a greater risk, but you are not alone! And there’s something you can do about it. Get tested! Take control of you future.

B) There’s no good screening method for ovarian cancer. By the time most women start experiencing warning signs, if ever, it’s too late in the game.

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C) The risk involved for those of us with the BRCA mutation is just too high to ignore. This is why most women with the mutation opt for preventative hysterectomy and double mastectomy. (If you’re thinking to yourself, “Wow. That seems pretty extreme.” You’re right. It is extreme. And I pray that someday this won’t be the norm, but for now these preventative surgeries are the best options the medical community can provide.)

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D) I will need your help! Meals, encouragement, support for Josh and the boys, maybe a hair wash.  And prayers, lots of prayers.

DD) If I look different (ahem) the next time you see me you’ll know why.

So, here I am, 4 days away from my 36th birthday. In 3 days I have an appointment at the Women’s Oncology Center in St. Louis to schedule my preventative surgeries and discuss my options. I’m not 100% sure what that will look like. I’m not afraid, a bit anxious, but also really ready to start on this journey. If these surgeries will provide me the opportunity to someday sit on the back porch with old man Josh Nordean while we watch our grandkids play in the yard then I’ll take it, all day everyday.

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Thanks for reading friends! I covet your love and support. And cheesecake. If you have any cheesecake, I covet that too.