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Happy Anniversary

Y’all, I blinked and an entire year has passed by. I cannot believe that ONE YEAR ago I was having surgery at this very minute. I was under the careful eyes of Dr. Ordoyne and Dr. Wise. My surgery would last six hours and when I woke up, I would ask Dr. Wise if he was going to do surgery. He laughed and said it was done. Anesthesia is a surreal experience. I remember not quite believing that we were on the other side of this massive thing. I do remember looking down and seeing a horrible black front clasp bra that was embossed satin and tons of gauze and tape. I remember thinking, I guess something did happen.

The only other surgery I’d had before this one was my appendectomy in like 1990. I don’t remember anything after it beyond antibiotic shots to the butt that seriously almost broke me, and huge horse pills that have scarred my ability to take a pill to this very day. I didn’t know how I would react after anesthesia. As it turns out, after anesthesia, I’m pretty much just like any other Christia, with maybe a little bit of my favorite gangster rappers thrown in.

When I look back at pictures of my body marked up for surgery, I’m instantly thrown back there. I remember feeling so ready and almost excited about the prospect of losing my mom skin. I felt like it would help me feel confident once that was gone.

Nipple Sparing Mastectomy = NSM
(For real this is a hard picture for me to post! My body carried 4 big ol’ babies, obvs)

It’s an entire year later and I still don’t feel comfortable in my skin. There are definitely aspects of my new body that I appreciate and love. I also really respect the fact that my risk of breast cancer is significantly decreased. It wasn’t a quick fix though. Turns out, getting that mom skin cut off did not instantly make me confident. I needed to fix something inside of me for that to happen. Dr. Wise did keep his promise though, I did wear a bikini all summer, thank you very much.

I’m just going to say, that center picture, with the blue cords taped to my chest was right after surgery. I was definitely 100% still on a pain pump, and thus high as a kite. Those blue cords are doppler cords to make sure blood flow to my flap was good. You see, they didn’t just take the fat and shove it in the breast cavity, they performed a transplant and reconnected blood vessels. I had those dopplers until I was discharged and honestly having them removed freaked me out a bit. What if a flap failed? Thankfully, it didn’t happen. The pink is my first time standing up after surgery. It doesn’t seem like a big deal until you remember they cut me from hip to hip and pulled my skin insanely tight. Do you see how straight I’m standing?? Hi, that’s HUGE! #TootingMyOwnDamnedHorn My surgeon was definitely one that encouraged walking as straight as possible and as much as possible from the get go. I think right after that photo I walked to get my first self served icee. Ok, I think Barry actually served it to me because that pull down motion would have been hard to do with my chest muscles so weak.

It may have been one year, or 365 days since my surgery. I may be roughly 30 lbs over my ‘goal’ weight (thanks to my nonstop bulking pre surgery that’s mysteriously continued post surgery). I will forever do the nerdy peace sign pose and be grateful for the knowledge that a BRCA1 mutation has provided me. I’m very grateful that I’ve been able to be proactive and take control of my health.

In someways it feels like an actual lifetime since September 11, 2018. In others it feels like the blink of an eye. Or like an anesthesia nap. You don’t remember anything happening but you look around and see subtle changes. I went to sleep hoping that when I woke up I would instantly feel comfortable in my skin. That I would feel like the badass that I know lives deep inside. It turns out that it doesn’t exactly work that way. I need to work on making my inner and my outer badasses match. Pretty sure that peace signs and tacos will definitely help the two come together.

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3 Weeks

IMG_1948 2And just like that it’s been 3 weeks since my prophylactic bilateral mastectomy with immediate DIEP flap reconstruction. In the hospital I seriously had NO pain. Leaving the hospital I had NO pain. Soreness sure but no pain. In the AIRBNB, no pain. The ride home? You guessed it no pain. I’ve been extremely blessed and am so grateful for numb nerves. Last Thursday, however, I was in PAIN.

Thursday morning, I was feeling great. My morning drain output was higher than the day before, by kind of a lot. 5 vs 23. I wrote it down and shook my head thinking I’d have this damned drain for the rest of my life. I even said that on my instagram story. I sent a text to my friend Jana to see if she wanted to drive me to Target to get some Halloween decorations and random groceries that I needed. We did that, stopped at Barry’s clinic for her to have a quick appt, and then stopped at Ulta so she could grab some new concealer. I was cold the whole time we were gone but it has cooled down slightly in Florida and I thought maybe they hadn’t adjusted the AC to the new cooler temps and brushed it off. I did feel more tired in Target than normal. The aisles seemed way longer than normal and I didn’t even look at mommy clothes or shoes. When we were driving home, Jana got a call that her 1st grader had injured herself at school and Jana wanted to pick her up. I rode along and turned on my heated seat and finally felt warm. Jana dropped me off and bundled up in a sweater, fuzzy socks and as many blankets as I could find and passed out. I woke to the sound of Owen and Emilia walking into the house. I had checked my temperature before I fell asleep and it was 97.4º. I woke up and was shivering despite all the blankets and clothes. I checked my temp and in an hour it had climbed to 102.5º.

I tried to text Barry because I didn’t know what to do. I waited almost an hour to hear back from him and he never read the texts or responded. I texted Jana and she told me to call NoLa. (DUH in hindsight!) They immediately called in an antibiotic and Barry picked it up for me.

Y’all when I say this, I’m not exaggerating. I felt SO bad. My fever wouldn’t stop, even with tylenol. I had the worst headache that wouldn’t quit. My entire body hurt and I physically couldn’t get out of bed by myself. My core was so weak. I mean, yeah that is pretty common after DIEP but not 2 weeks after DIEP! Barry had to help me sit up in order to get out of bed. I was a mess and I couldn’t stop crying. That night, my night drain was over 90 cc/ml. It was bad.

I felt like a complete failure. It had been 2 weeks and I was back to being in my bed for the near future. I couldn’t parent. I couldn’t even sit up to go pee by myself. It was horrible. The next day, Barry went in late and came home early. He brought me nachos bel grande from Taco Bell, because I’m classy and hungry and watched Real Housewives of Beverly Hills with me. He did 100% of any and all parent responsibilities. The antibiotics worked swiftly and by Saturday I felt almost human again. I could at least get up to pee on my own. Drain output continued to decrease. Leftie started to improve. I thought everything was in the past.

Today, when Barry was leaving for work he barely brushed against my drain tube. It HURT SO BADLY. I didn’t think much of it and hadn’t noticed it being red at all. I showered today and saw it without betadine surrounding it. The site is red and enflamed. That + pain = infection of some kind. I emailed NoLa and they want me to start a second antibiotic, concurrent with the other. Since output is still too high they think the infection is likely there and likely was there. Hopefully this second antibiotic will get me all cleared out of any bad bacteria and I’ll be drain free soon!

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Good Vibe Request

Y’all, leftie is up to no good again. I’m calling NoLa soon to see what they say. Dr. Barry thinks I need antibiotics 😩 so I’m sure that they’ll say the same thing. I’ve been waiting for that other shoe to drop. I suppose this is it. My bellybutton is also a little red around the edges. Gah. I’ve been so compliant with wound care, showers, etc so this feels like a major blow. I’m sitting on my bed, spontaneously crying, topless hoping that my infection gets dried out just a bit.

In other news I’m watching lots of Real Housewives of Beverly Hills, drinking lots of water and trucking along. I’m trying to increase my step count by 500 a day. The bruising is going down and so is the swelling.

Focusing on the positive and these rays of sunshine that are taking such good care of me.

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Potential Surgery Date

Today my phone alerted me that I’d selected today as a potential surgery date. WAY back in February when I was first starting my journey. I’m not far off. In just a few days I’ll be done with surgery and on the flap side. I’ll be recovering and will have reduced my risk of breast cancer to a MUCH smaller number. It’s kind of surreal that it’s already September 7th and surgery is looming. I’m really not nervous for the actual cutting. I’m nervous for the after. The healing and pain. I’m worried about my kids and how they’re going to deal with me being gone that long. (Spoiler alert, they’ll be fine and I’ll have worried for naught.)
I’ve got my suitcase half packed, and I think I have everything I need in a pile. I’m worried I’m not bring enough stuff and also worried I’m bringing too much stuff. I’m marking off the last of my to-dos before surgery, collecting my thoughts and my goodies. I think I’m ready. I think.
Emilia told me today, on the way to school, that I could bring Howard with me. If you don’t know, Howard is a bunny that she’s had since she was about 1. She (Howard is a girl’s name) is ratty, and well loved. I almost broke down crying in the car at her generosity. Howard is HER buddy. The one she sleeps with every night. Every. Night. And yet, she’s willing to share her comfort buddy with me so that I’m comfortable.

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I’m really just overwhelmed at the support and love I’m receiving. I know this is a weird thing to be doing. I, myself, thought Angelina was a bit loco for cutting off her boobs to prevent something that might happen. And then I found out I was BRCA1+ and suddenly I understood. This is something concrete that I can do to reduce my risk. Along with the other things, healthy eating, exercise, not smoking, etc. Wednesday night, my coworkers surprised me with a card, some boob/coconut/disco ball cups and a huge bag of gummi bears. I definitely cried reading the card and all of the encouraging messages inside. I also definitely had gummi bears for breakfast and lunch yesterday. Yesterday was my ta-ta to the tatas party with my sweet friends. So grateful to be surrounded by people that love and care about not only me but my babies. I know they’ll be loved while I’m gone and I’m so grateful.

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ISO: caregiver

I think I told you before that I’ll be in New Orleans for like 9 days. It’s broken up into nice easy segments.

Night 1: Pre-Op. I’ll have a CT scan of my abdomen to ensure sufficient blood supply to my belly fat along with a slew of other tests. I’ll have to fast at midnight until after surgery. But you better believe I’m eating something delicious that Monday for dinner 😂

Nights 2-4: Surgery and Recovery. I’ll be holed up in the most beautiful hospital I’ve ever encountered. Y’all, it didn’t even smell like a hospital. And they have a chef who’ll prepare my meals. It’s not hospital food, either. It’s Louisiana food.

Nights 5-9: Hotel Stay & One Week Post Op Appt So when I leave The Center I will have 4 drains. 2 breast drains and 2 abdominal drains. At my one week post op appointment they’ll make sure things are healing properly and remove one set of drains. From what I hear it’s an incredibly freeing experience. Probably like taking out your new Invisalign tray AND taking off your too small bra with an exposed underwire multiplied by 1,000. Then I get to come home.

Y’all know, or don’t? My husband is a family practice physician. He is really good at what he does. And obviously is willing to spend the entire 9 days with me in New Orleans fetching my every culinary whim, assisting me with bodily functions, showering etc. The only thing holding us back from that plan is this:

Or should I say, these. We don’t want it to be super hard on them. I’m not sure if I want them to see me so close to surgery. They’re extremely affectionate children and love them some Mama snuggles and Mama just won’t be able to snuggle.

We are in discussion right now to figure out when B will stay and when some lucky friend of mine will get to stay. Do you think having him directly after surgery is best? Or will his expertise be better served when there aren’t highly skilled nurses and physicians mulling about?

Helpppp. I know I have about 5 months to figure this out but patience isn’t my strength and I just want your opinions. Would you prefer to have your spouse with you before and directly after surgery or when you’re discharged but not yet Home?

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New Orleans Update

Now that I’ve had a week to digest, both literally and figuratively, my New Orleans trip I am ready to post about it.

IT WAS AMAZING. IMG_0017 2.jpg

I can’t post anything else without shouting out to the best friends and support I could have ever asked for! Not only did they leave their families and sacrifice family time to come with me, they were there to make me laugh and relieve any stress or tension I felt in the actual center. I’m so forever grateful for these two! And so so so happy they like to eat as much as I do.

We got into New Orleans at about 6 PM Sunday night. From there we went directly to the hotel after a few missed turns, and a blessing from the universe in the form of Matt Nathanson. We suspect that the building was an old mental hospital but google cannot confirm or deny that suspicion. The hotel itself was nice and clean. We changed quickly and then headed out for dinner. Mister B’s Bistro was our destination. It was delicious. We shared the gumbo and fried green tomatoes for appetizer and then each got the shrimp and grits because we didn’t want to share! We ate and then walked down Bourbon street, stopped in a voodoo shop and then went to Cafe DuMonde where we were able to walk right in and sit down with no wait at all! (relatively pro tip, go at night!) There was a band playing just outside and the atmosphere was so cute! It started drizzling at that point so we opted for a cab ride back to the hotel. Also, random question, do you wear your seatbelt in a cab?

In the morning we got ready and then walked to Luke. We had the best French Pressed coffee, it almost made me want to try using my French Press…almost. We shared out breakfasts. I ordered chicken and waffles, Jana the shrimp and grits and Geri a hot buttered crawfish and burrata tartine. ALL WERE SO GOOD. We then walked around some more and ended up at Cafe Beignet. Just gotta say Cafe Beignet > Cafe DuMonde! Cajun bloody mary?! And absolutely fresh beignets! The line was just as long as the morning line at DuMonde but I would definitely make it a point to try both for your own scientific research.

Then it was time for my appointment. I was so nervous. I was afraid that I wouldn’t be a candidate for the reconstruction I had been planning on, or that something was going to go wrong. Or I’d flip a coin and somehow lose. None of those things happened.
I met with the breast surgeon first. He’ll be performing my mastectomy. He was very kind and answered my questions mostly before I even had a chance to ask. My biggest question going in was why am I keeping my nipples? Like I’m doing this somewhat radical preventative thing to leave this source of potential breast cancer? It didn’t make sense to me…until he explained the procedure for removal of breast tissue and that the remaining tissue would be so little that IF I were to get breast cancer in it, the cancer would be immediately felt. And, I asked about nipple function. Because I don’t want to have headlights ALL of the time, ya know? And he explained that it’s a muscle reaction instead of a nerve reaction. That matters because my nerves will be severed during the mastectomy and it’s extremely unlikely I’ll regain sensation in my breasts.  After a quick breast exam that appointment was done.

Then I sat out with my friends for about an hour until my plastic surgery consult. They were seriously so patient just waiting while I bounced in and out. LOOOOOVE.
I met my plastic surgeon in a sort of conference room. I was impressed with the number of chairs in the room because it was just he and I. We talked about my options, which are limited due to the prophylactic nature of my reconstruction. Both. Only option. As far as reconstruction it’s implant or autologous (my own cells). He said the implant option would likely be uncomfortable, painful, cold and animated as they’d have to use the largest implant available. (He’s clearly not Dolly’s surgeon, ok!) It would be sewn under the muscle and would ripple or move when I used my muscle. He explained the DIEP flap procedure, drew me pictures of what would happen and then told me he would get rid of all of my stretch marks! Which is exciting and also a little sad. E won’t ask anymore if she maded this one or that one. I asked if there was anything I could do to not have to get a small implant for projection, and I even asked if I could just eat tacos. He said tacos aren’t even that bad for me but beignets and fried chicken would do the trick. Ha!
After the consult I went into the room and had to get naked, but for some cozy socks that they provided and a gown, open in front. They took photos and then my surgeon came in to assess the situation. He said we are going to go a little smaller and lifted which is A-OK in my book! Bye bye DD! Said I should be good belly wise, thanks four children, and said we may need a super small implant for projection but he thinks it’ll be fine! He told me I should be out for a total of four weeks but said they would write a note for six weeks if necessary. I told him that my boss was actually out in the waiting room and that she’s unbelievably understanding.

The facility is, just, well incredible. It’s beautiful and welcoming and not antiseptic feeling at all. It feels comfortable and homey. I don’t know how I got so lucky to have such an incredible place just a few hours away. I’m so grateful to Mackenzie for being so vocal and open with her journey and for encouraging me to check them out! I now know that I belong there. IMG_0026

Billing told me what she expected our cost share to be and while it’s more than I initially thought it is still so so so incredibly low! I’m grateful for insurance and the Army and the sacrifices that Barry makes to take care of our family. I’m not exactly EXCITED for September 11 but I’m excited. (Which makes zero sense, I know!)

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NOLA

So, I had a really positive phone call with the charge nurse of the New Orleans facility. Since I’m cancer free and this is a prophylactic mastectomy and reconstruction (definitely thinking positively today!) I will be eligible for a nipple and skin sparing mastectomy. That means everything will look pretty much the same when all is said and done only better.

I will need to be in New Orleans for about 9 days total. a day or two before, three nights in the hospital after surgery and then on day 7 post op I’ll be released to go home. I’ll come home with (likely) two abdominal drains. She said since I’m relatively young and healthy the recovery time should be between 5 and 6 weeks. She said I won’t be able to lift anything but I should be able to drive pretty quickly. (I am so afraid of being completely reliant on everyone so this felt SO good to hear!) She said I would have to take it easy and rest but still move.

I also found out I’m a candidate for the type of reconstruction I wanted! DIEP Flap Reconstruction. You can read about it here! I might have to do an extended DIEP which just means a longer abdominal incision. They’ll not only use belly fat but my hip fat too! (BYEEEE love handles!) She said my surgery would last between 7-9 hours! There will be two surgeons, the oncologist surgeon who will remove every speck of breast tissue and then send it to pathology followed by the micro plastic surgeon that will do the reconstruction! Three months after recovery, I go back to NoLa for a night and have phase 2 done. Since everything is already going to look good (her words, not mine) it’ll just be fine tuning and LIPOSUCTION if I want it. Say what?? You’re about to see as much of my navel as an early 2000’s Britney video. Sorry, not sorry!

I am waiting to hear from their benefits coordinator/billing person to find out how much my insurance is going to cover but I think it’s a 100% doable figure for us out of pocket. If not I’m definitely not above a GoFundMe haha! Feeling incredibly grateful for TriCare right about now. In my dream world tomorrow’s scans show no cancer or anything sketchy and I can schedule surgery for 9/7. (7 is my lucky number, I realize that’s irrational but like, hey it’s my dream world.)

Things are all set for us to leave super early tomorrow! Still SO grateful for everyone that has volunteered to help with the kids and extra thankful for Nacho Mama, Geri for taking care of my punks!

 

 

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The week of a million appointments

Ok, so I’m being dramatic. But this is a big week, medically. Starting with today. I have a phone consultation with a surgery center in New Orleans at 1 o’clock. I’m definitely not procrastinating the things I’m supposed to do by writing a blog post, nope, not me! I’m anxious for this phone call even though realistically I know that there’s nothing specific about my case/body that they’ll be able to tell me. It’s supposed to last close to an hour. I am not quite sure what we’ll talk about for that whole hour but we’ll see!

Thursday, Barry and I are heading up to Birmingham for three appointments. Mammogram first, specialist second and then MRI last. I’m so incredibly grateful for my friends that have volunteered to shuttle my kids and especially for Geri. She is getting up Bondi early to take them to school and of course, it’s Thursday. Emilia has ballet. Not an easy day like M/W/F but it has to be on a ballet day! Ha! She’s excited for the challenge and my kids are stoked to have their actual favorite person watch them. Owen even suggested that I could stay in Birmingham for like two weeks if I needed to. (He totally loves me.)

I will gladly accept any and all good vibes today and Thursday. If I’m being honest, I’m afraid for Thursday. Not for the tests themselves. I mean a mammogram certainly won’t be FUN, and sitting in a tube for 45 minutes listening to a disjointed symphony won’t be FUN either but I’m terrified for the results. My cousin was my age when she was diagnosed with breast cancer. There’s this voice in the back of my head telling me it could be and it’s getting progressively louder the closer to Thursday we get.

If all goes well on Thursday, I am hoping to schedule my surgery for early September. There are a few reasons for my desire to schedule it so ‘far’ out and most have to do with my kids. It’s almost summer vacation already. I mean, I just paid for my kids’ dance recital costume! It’s happening faster than I can imagine. I don’t want to spend my kids’ entire summer stuck in a recliner. (Also, that’s something I’ll get to shop for in the future, apparently it’s the most comfortable place to sleep after mastectomy!) I want to be able to take them to the pool, or the beach, or miniature golfing. Or be able to drive them to the store for food. I know my recovery is going to be kind of intense. It just makes the most sense to me to wait until then. I know Barry will help as much as possible and I have a hood full of people willing and wanting to help. I also want to be able to rest and recover and that just isn’t happening with my kids home. If the flu showed me anything, it’s that when they’re home mama doesn’t rest.

Thanks for reading and I am accepting good vibes from now until eternity 🙂