Previvors are, as defined by FORCE, “individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.”
I am a previvor.
While that term hasn’tever felt exactly right, by definition, I fit. You know how there’s a thing called survivor’s guilt? I have previvor’s guilt.I got a choice in the matter. I got to choose to have my mastectomy. My salpingectomy. These were choices I had. I didn’t face life or death in order to make these decisions.
Idon’t feel brave, or strong, honestly, but I recognize that I made some drastic (to some) decisions.I feel like I made the best choice for my situation and family. My breasties that are battling stage IV metastatic breast cancer are strong and brave and so powerful. My fellow previvor’s are strong and brave. They’ve gone through so much.It’s weird. I don’t feel like I’ve suffered enough to be considered a previvor. All of this, of course, is my own issue. My own feelings of inadequacy.
Today is National Previvor Day. To my fellowprevivors I applaud you and honor your strength and bravery. For making the choice.
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.
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.
Today I started listing some clothes on Poshmark. I have so many things that I’m not wearing, or that don’t fit, or just aren’t ME anymore. Also, who is ME March 11, 2019? That’s a hella good question! I can tell you physical descriptors-platinum bob, green eyes, size 9 shoe, size 29 pant. I could tell you how much I weigh but none of those things define me.
In listing these clothes I came across a photo from almost exactly 3 years ago and I truly and honestly barely recognized myself.
The craziest part is while I’m about 30 lbs lighter in this picture, I remember the same uncomfortableness that I have now. That there were parts that still needed to shrink to fit into this mold. I’m glad there are so many body positivity movements right now, that this topic is being talked about instead of ignored and swept under the rug. (Or carpet as Kyle from RHoBH would say.)
I’m learning to love and appreciate the new body I’ve been given…I gotta admit my new belly button is CUTE. I’m also trying to get into the strong mindset. To get back to the girl that worked out because she *liked* it not just because she wanted a calorie deficit. The one that could just run 6-8 miles and be cool. I don’t think I have the desire to run a half marathon ever again but a 10K would be cool.
Believe That i know that my body has been through some SHiT the past 365 days. My mental state as well. And I’m not mad at myself for gaining weight nor will I be punishing myself. I’m going to continue the #LowCarbLife That I’ve been doing for the past week, and slowly start exercising again. I guess I should put to use that treadmill and elliptical in the garage, eh??
It’s Thanksgiving day. A day where all of the United States of America reflect on things that they’re thankful for. We eat too much, spend all day in the kitchen preparing and then all night doing the dishes. This year, we are doing something a little different. Not terribly different. We just didn’t succumb to the social pressure to eat turkey, mashed potatoes, green bean casserole, etc. We are making a homemade lasagna and eating chick fil a nuggets. We are still doing the whole reflecting thing though. I personally have so so so much to be thankful for. My health. My mobility. The fact that I’ve reduced my risk of genetic cancer by SO much. The fact that I was able to make an informed choice. Nobody had even heard of the ‘breast cancer gene’ 10 years ago. At least not as much as know about it now. Angelina’s mastectomy was in 2013! She was honestly the first I’d heard of this gene. I am grateful for knowledge. I’m grateful for doctors and researchers who are doing more good. I’m insanely grateful for my babies and my husband. For the care that they all provided while I was out of commission. For the grace they gave me and continue to give. I’m grateful for my home and for the fact that I have a home to go back to after Michael. I’m grateful for my friends that rallied when I needed them. For friends that faced fears to take care of me when I was recovering. For friends that challenge me and encourage me. I’m grateful for my job and work fam. It’s a great year to be grateful. What are you grateful for?
Yesterday was my 35th birthday. It sounds so old. It doesn’t feel that way though. I feel like I’m still a young, hip person. I mean, until I spent the day doing laundry, cleaning my bedroom and grocery shopping. I decided to start my 35th trip around the sun with a completely clean bedroom. After my surgery I kinda just didn’t care. I was trying to get better. I watched a LOT of housewives, and spent so much time in bed. It wasn’t HORRID but it wasn’t good either. Now it’s good. It feels like the serene escape I need. I am going to work on finishing up the bedding and decor this week. I’m still loving my bamboo sheets. They’re so great and such an affordable option for king bedding. They’ve only gotten softer with use and washing. I’ll probably buy another set of sheets so they’re constantly on rotation. I’m not terribly inspired though for further bedding though. Anyway, a bedroom decor post is not what I was planning on with this post but I’m excited to get my bedroom finally finished. And to be a grownup. Last Sunday was TWO MONTHS post op. In some ways it feels like my surgery was so so so recent and yet in others it feels a lifetime ago. I feel like I blinked and it was over. Maybe I blocked out the recovery part? Or maybe I’m delusional. I definitely remember the infection, dealing with my drain and all of that. I think it’s probably good to forget the recovery part? I mean I’m heading back to New Orleans next month for the rest of the surgery, Phase 2. Many people are curious about what exactly Phase 2 consists of. In order to tell you about P2 I’ll have to give you a rough overview of P1. During the initial reconstruction they basically just had to take my belly fat, whatever was available (ended up being something like 700 cc/each) and put it inside the breast cavities. There was a lot more involved, micro surgeries and transplanting arteries and veins and all the things but it was less about perfecting the breasts, just getting them to be there. They said it’s easier to reduce than increase size so I was totally ok with the bigger breasts…for now. Phase 2 will be a reduction, scar revision, and liposuction with fat grafting. Luckily I didn’t have any necrosis or anything weird. The amount that transferred pretty much stuck. I do have about a grape sized hematoma in righty but it’s getting smaller every single day. I’m also having my fallopian tubes removed by a gyn/onc. I don’t want to go into surgical menopause. I’ll have the rest of my lady parts removed when I’m closer to 40. I mean, I’m pretty damned close now, but 5 years is a while!! I’m so grateful to a group of doctor wives spouses for sending $$ for meals while I’m gone. My kids will LOVE the chick fil a and Zoey’s! My bestie has created a meal train and I’m forever grateful to those that will feed my family while I’m recovering. I am hopeful that my recovery this time will be even better than the first. That I’m back to normal quickly! That I don’t have drains for more than a week. That my boobs look perfect, ha! (Not that they’ve ever looked perfect but heyyyyyy, best plastic surgeons in the world can hook a sis up!) Birthdays are weird as an adult. I mean, there isn’t the anticipation that there was when you’re a kid. Instead of anticipation its more excitement for a new year. For all of the new possibilities, it’s like a new start. Fresh. I’m grateful for the opportunity to look forward and start fresh every year. 35 is going to be DOPE! I keep saying that, but I truly believe it.
And 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!
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.
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.
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.
Yesterday I had my LAST set of scans at UAB. I mean probably. There’s always a chance I’ll need a mammogram some other time for whatever reason but it’s so unlikely. Geri and I left at 6AM on Tuesday to head to Atlanta. They’re furnishing a beach house and I am so honored to help them decorate it! (That’s for another post though!) We got to IKEA at around noon and devoured some meatballs and then shopped until we dropped. For real. 4 times we packed/unpacked the car. 3 separate check outs and so much furniture later and this is what my trunk looked like.
I cannot wait to show you what we have planned for all of those pillows, those seagrass poufs and the rest of the flat packed boxes you can’t see! We stopped at Mellow Mushroom and ate pizza and drank rosé in our hotel room. I was so tired after all of that lifting and master level tetris that I fell asleep so fast!
We got up early and had breakfast at my favorite breakfast spot in ATL (just for clarification it’s the ONLY spot I’ve had breakfast but I doubt I’ll ever try anywhere else because the food is so so so good!) The Flying Biscuit. If you’re ever in midtown go there! You won’t be disappointed. I’ve had the turkey hash twice and will have it again soon. Love you turkey hash. Then, with our bellies full, an epic Beatles, Soundgarden, Kat Graham, and many many more play list we headed to Birmingham.
My first appointment (MRI of my breasts with and without contrast) was at 11:30 and we got to the Kirklin Clinic at 10:00. We took a brisk walk up a really steep hill, and then around UAB and went down to the basement for my MRI. The got me back there a little early, my IV was placed and it didn’t even hurt and didn’t leave a bruise!, and then I got ready for my MRI. Luckily they’d ordered a preauthorization and we didn’t have to wait at all for that! It was pretty painless, I feel asleep listening to the random disjointed symphony.
After the MRI was the ultrasound of good ol’ leftie. I thought I was having a mammogram too but it wasn’t so. I panicked just a little worrying that I’d have to get a mammogram back at home and emailed The Center to see if it would be necessary. Within two minutes, (seriously!) I had a response saying the MRI and ultrasound would be fine! Whew! The ultrasound was pretty quick and the tech was AMAZING! After she got her measurements the radiologist came in, took one look at the pictures and said, “Well, I don’t think THAT’S anything to worry about.” Gotta be good news, right?
After the ultrasound, which revealed NO CHANGE in the mass!!!! we went upstairs to wait for Julie. Y’all. I LOVE that woman. She is incredible. We laughed, and there was a lot of eye contact. It was so good. She said she’s excited to see what my boobs look like after reconstruction NEXT YEAR! I’m released for a year after my surgery! And she said she’d call me with the MRI results.
Then we went to to Taco Morro Loco and devoured the most amazing tacos.
Somewhere between Birmingham and Santa Rosa Beach, my phone rang! It said Birmingham so I answered it. (Who actually TALKS on the phone? I mean isn’t it just for texting, Facebook and Instagram??) It was Julie! MRI results were in! So fast and they were CLEAR! No changes to the mass and it still has the characteristics of a fibroedema. Benign! They’ll send it to pathology when I have my mastectomy to be sure but woohoo!
Today, while I was picking up my last minute school supplies that I forgot about, I got another phone call, this time from New Orleans. I definitely answered that one too! It was a nurse from The Center with pre op orders! OMG! It’s getting real. I’m having surgery in a month! Holy smokes!
PS my little kids have amazing teachers for Kindergarten and 2nd grade. I’m so glad that they’ll be in such caring hands while I’m away and healing!
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?