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.
So, you probably know that I had a prophylactic mastectomy with immediate DIEP flap reconstruction in September. I had phase 2 of my surgeries in December. It’s been nearly 5 months since phase 2 and suddenly I have a pointy belly. That sounds super weird and dramatic but it’s actual and factual. My last period was 3 weeks ago and that’s when I noticed this new pointing thing. I can’t say for sure that’s when it started but I have it on pretty good authority that it started around there. I first just assumed it was related to my period. You know, bloating, etc. When it was still present over two weeks later I made Barry look. He thought it was ‘weird’ but didn’t offer any diagnoses or possible solutions. My girlfriends, however, were all about it. I’ve been in compression pretty much every day for a week, and my belly is still pointy. I’ve upped my water intake, and am drinking around 100 oz (which really I should have been doing the whole time but I mean, sorry. I love coke zero orange vanilla so much!) It’s still pointy. I emailed the LPN that worked with my plastic surgeon and am now scheduled for an ultrasound on Wednesday. I’m nervous. Like really, nervous. Not that I think there’s anything SUPER wrong or that I need surgery tomorrow, but I’m afraid I need surgery, soon. The thing is? I thought I was done with surgeries for at least five years. The thought of going through another, even if it is a same day, out patient surgery, is terrifying. The thought of being forced to rest again for any amount of time makes me want to cry. It might be nothing. It could just be fluid and weird. It could be an abdominal or incisional hernia. I know things could be so much worse but it just feels like another kick to the gut. Like I’m just feeling normal and getting comfortable with my post mastectomy body. I wore my bikini in the Bahamas and didn’t feel TOO self conscious thought a little worried about being judged for having a tummy tuck! (IT WASN’T A TUMMY TUCK!) Anyway, if y’all can spare some extra prayers, good vibes, good juju, whateverrrrr on Wednesday at 2 central time, I’d really appreciate it. And just so you can see what I’m talking about, EUREKA! , my pointy belly.
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??
Almost six months ago I had my mastectomy and DIEP flap reconstruction. Directly after surgery I felt invincible, strong. Like a badass warrior with a flat tummy. Our family celebrated being done with surgery with a cruise to the Bahamas. It was our kids’ main Christmas present. This meant the first time donning a swimsuit since before my surgeries.
Initially, I wasn’t worried a bit. I mean I had just had my surgeries and my tummy was so flat. I should feel rocking in my bikini. My boobs are pretty perfect, especially after having four kids, and being in my *gasp* late 30s. Shopping for them was fun! I found a killer deal at Walmart of all places on a super on trend bikini and felt pretty good in it. Until it was actually time to wear it.
The familiar self doubt and self loathing creeped in. Ugh the bottoms cut into my hip. My thighs are so wiggly. I internally celebrated every other woman in her swimsuit for enjoying her vacay, or seeming to give no Fs about anything but that pineapple drank.
It’s funny how it’s never enough. My brain is wired to think I’m not good enough. I worried that people were thinking that I had just had a tummy tuck and were judging me that way. Who cares if they were, right? I enjoyed the trip with my little (big) family immensely. Seeing the joy on their faces as we fed pigs on Treasure Island, and discovering Moana shells while snorkeling are precious memories that I’ve stored away.
How can I rewire my brain to love my body? To not look at the flaws as bright flashing neon lights saying I’m not enough? How can I teach emilia to give no Fs and enjoy herself?
You guys, phase 2 was already over a month ago. I am convinced that the past month went by faster than any other month in the history of months. Am I alone? How are we over 1/2 way done with January already? I have so many questions for you this morning. Did you make a resolution this year? Or have you set a word of intention for 2019? Financial goals? Physical goals?
I did set a word for 2019. I set some goals, some financial-ish and some physical-ish. I’m not cleared to exercise yet, but I’m walking. And trying to eat intentionally. To fuel my body for the work I need it to do.
As far as healing goes, this phase has been over a lot faster. I’m not sure why that is. My abdomen was a lot more tender this time. It seriously felt like I’d done a bunch of pure barre classes back to back to back. It lasted quite a while, laughing sucked, coughing and sneezing too. It’s still not SUPER fun to sneeze or cough but it’s not quite the same jarring pain that was before. I barely bruised this time which surprised me. Of course there was SOME but I expected with liposuction and fat grafting for there to be more bruising. I slept in my bed from day 1. Slightly inclined of course but no need for a recliner or any special accommodations.
As far as the financial aspects of my goals for 2019, I’m trying to manifest $100,000. I have heard this saying before, and while I’m not entirely sure of the process, it can’t hurt. I am also trying very hard to be mindful of any and all purchases. I’m avoiding Target for January and maybe February as well. Maybe forever? I mean, we went there for some cortisone cream and they’re the only place that I knew of that sold the brand of tampons I love. I think total for the month of January we are at less than $50 at Target. That’s a win! Now that I found my tampons on amazon it’ll be even less.
I am trying to repurpose things in my home to make them both functional and beautiful. I’ve been doing a massive purge. Seriously. If you don’t follow my instagram you should, I’ve highlighted them as “The Purge”. Pretty entertaining stuff. I think I’m pretty close to the 2019 things gone for this year and it’s just barely 2 weeks in. I’m trying to buy used when I can. You know, recycle in its most basic form. I’m going to share pictures on another day of the transformations some rooms have had since the purge. It’s been cathartic AF and I am so grateful to my body for being able to do this. Kitchen, desk/office, coat closet, game cabinet, tv stand, linen closet, emilia’s room, bunk room are all clean and purged. I have left my room, bathroom and closet plus the laundry room. I’ve purged for a bunch of days straight so today I’m spending it watching trashy tv or reading my favorite pink books (romance novels!) or just doing nothing. My body needs a break. My brain needs a break.
Where are you at with your 2019 goals? Did you make them? Leave me a comment sharing your current status.
Remember how I tried to start exercising again. I had a good two days. Sunday, Geri and I ran a couple miles (run is a very loose interpretation of the the word) and then I started gentle yoga for the first time since surgery. It was weird and good. Weird because I was unaware of my breasts. They are numb or feelingless. I don’t know how to explain it. There were certain poses that were hard because they were there and I didn’t know. It felt so so so good to move. After yoga, I shot the kids for our Christmas cards. (ps they’re CUUUUUUUUUUTE! If you want one message me!) Monday morning I drove to Fort Walton Beach to pick up more chairs. I know, I have more chairs than I need. Barry agrees 100%. They were on facebook marketplace and such a good price and are AMAZING. I’m trying to decide how to change them up. I might just clean the upholstery and see how they look. Other ideas that I’m entertaining include velvet? Maybe like a rich jewel tone?? I don’t know. I just love them so so so much. Anyway, after I picked up the chairs I met up with Geri to run to tacos. (I mean it is me that I’m talking about, and she too loves the food.) We crossed 98 and were trucking along 395. Made it to the watercolor path without incident. I even spoke to the Center about my preop instructions.
And then….I fell. And I fell HARD. I split my leggings over my knee.
It looks not terrible in this picture. I mean not great but under the pants is where the real problem is. I looked under and knew I needed to see a doctor. I sent my husband a picture of what was under the leggings and he agreed. Geri called Poppy (her dad) and he picked us up and drove us to her car. Geri drove to the clinic and it was confirmed. Stitches necessary. They cut off my leggings and washed it very well. I got my lidocaine shot and then Barry stitched me up. Barry did a great job and it’s looking so so so much better 7 days out. The sad part? I can’t work out, really. And I get my stitches out like 2 days before I go to New Orleans for my phase 2. So I’ll have like 2 days free of stitches, knock on wood.
Speaking of phase 2. I’m leaving Wednesday morning. I have a preop appointment at 2 and 2:30. Thursday morning is my surgery. And I don’t know exactly what it’s going to entail. Reduction, symmetry and scar revision, I think. Also liposuction with fat grafting. I’m hoping to say sayonara to my love handles if we’re being honest. That’s my update.
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.