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.
Today is supposed to be my last physical therapy appointment. I have really been challenged in PT, really struggled and felt myself getting stronger. When I’m done with that I don’t know what I’m going to do to continue strengthening. I’ve said before I used to LOVE running. I think I need to just try it again, like plug into my audio book and go for a few miles. It used to be such a great escape for me and my brain was free to be creative. I swear plot bunnies hide in my runs. I’ve set some goals for 10 years from now and they are kind of wild. They’re the kind of dreams inspired by greatness, AKA rachel hollis. One such goal is to have written and published a novel. I’ve written one, submitted it to a publishing house, and was asked to revise and resubmit. And then we moved and blah blah blah, excuse excuse excuse, I never did that. If for nothing else, I should go for a run again to feed that part of my brain that is only activated then.
Summer vacation is kicking my actual booty. Between visitors that I’ve thoroughly enjoyed having, adventures with my kids, new responsibilities at work, selling off my LuLaRoe (join my group and buy it for hella cheap!) and planning JuJu’s man-cave bedroom, I’ve been stagnant. I need to put myself first and realize and accept that it’s ok.
I have a dermatology appointment next week and I’m a bit nervous. I have had this spot on my nose for a few months. I don’t know exactly when it came, but I know it came after my facial. It won’t go away. It hasn’t changed but it does bleed if I bug it. I’m honestly terrified of skin cancer. I know I keep throwing the BRCA label around but it increases my risk of Melanoma. Like hi that shit is scary. So if this spot could either go away and or decide it’s a zit, that would be great.
Leaving you with a photo of the gulf from the condo that my parents are renting.
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?
Every year I pick a word to focus on. In 2018 my word was previve & thrive. When you have a brca mutation and you make the decision to have a prophylactic mastectomy it’s called previving. I’ve been struggling with 2019 and the word for the year. Tonight as I was driving home from work, I thought of a word that just might work: gratify.
I have spent the last year undergoing two surgeries, one injury that required seven stitches, an infection and hurricane Michael. It’s been a year full of healing and also patience. I’ve had to give myself grace, and learn to be quiet. I am so excited for what 2019 has in store for us. The adventures we have planned. I’m grateful for my sweet babies and plan to be grateful for every moment of mobility.
Do you think of a word? If so what is your 2019 word?
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.
It’s been kind of a hard week so far. Emilia had a tooth pulled on Tuesday. She banged it several times, once on the side of my footboard, once on a bench outside the lemonade stand, and probably a lot of other times I can’t remember. She’s had a filling before and did so great with it but the idea of them wiggling out her tooth was very stressful for her. Of course, in true Emilia fashion, she rocked it. She sat still as they did it and watched Sponge Bob contentedly. She told me after that it was much scarier in her head. Once she was at the dentist it wasn’t so bad. She’s so wise, so brave and so small.
Today, as I was getting dressed, she walked into my room. I’ve tried to be very honest with my kids about this upcoming surgery and why it’s happening and all of that. She watched intently as I put on my bra.
“So, you’re having surgery. Or are you having stitches?”
“Both, baby. I’m having surgery and stitches. I’ll have stitches here,” I said and pointed to the underside of my breast, and up to the nipple which made her laugh, “and here.” I pointed to my belly then.
“So, they’re going to cut off your boobs and then put your belly there?”
“Yep, pretty cool.”
“Mama, why do you have to have surgery?”
“To make sure I don’t get sick.”
“Do I have to have surgery?”
“I don’t know. You might. We won’t know until you’re older.”
“But, I don’t want to have surgery.”
“I know, baby. I don’t want you to have to have surgery, either.”
Statistics say 2/4 of my kids are mutants. My feeling is that all 4 of them probably are. (please please please let my gut be incorrect in this instance) I definitely don’t regret having my kids. I love them so so so so much but it feels so heavy to know that I have probably passed on this mutation to at least 2 of them. To know that my tiny little five (and a half) year old is thinking about potentially needing surgery is so so so hard. I was blissfully unaware of my mutant status until less than a year ago and my poor babies have to face it head on. I’m SO glad that I know. I’m SO grateful to be able to be proactive and PREVIVE. It hurts so much to know that my babies will potentially have to do the same. I mean, it’s probably a good thing that 75% of my kids are boys and it’s just an elevated risk of breast cancer/prostate cancer and melanoma. But, Emilia. Damn.
in 21 days I will be post op. So wild. The days keep melting into the next. Today was picture day for the elementary kids. Emilia told me the photographer called everyone George. It made her laugh. Lord I hope the kindergarteners had theirs taken first! Fingers crossed. At least they looked cute when I sent them to school.
Tomorrow, Mariah and I are going to go get my pre op testing done. Glad she’s coming with me to keep me company. I am hoping it doesn’t take all day long, but knowing my luck, it will. Chest X-ray, EKG, blood draw and more will need to be forwarded to my surgeon in NoLa.
Today, I got 2 queen sheets for the airbnb. White, cheap, bleachable. I got some more wash cloths, again, cheap and bleachable, and a hoodie and pair of joggers. I think I’m set as far cozy clothes go. I also got a boppy pregnancy pillow as I heard they’re really beneficial for sleeping.
Let’s talk about sleeping. Did you know, I’m either a tummy sleeper or I sleep with my arms crossed above my head. If you follow me on instagram, you’ve most definitely seen Emilia sleeping the same way. (Side, if you’re not following me on instagram, why not? instagram) I realized the other night that I won’t be able to sleep on my tummy OR with my arms above my head for some time. I hope I can adapt.
I’m not so much nervous about the surgery. They’re incredibly capable and competent physicians. I know I’m in incredibly skilled hands. I’m not nervous for the pain. I mean I’m not EXCITED for it, either. I’m nervous for patience and my general lack of. I’m nervous that I’ll be so frustrated with my lack of progress that I’ll sabotage myself somehow. I need to be reminded that I deserve grace at this time. That I can take this time to heal, that I NEED to take this time to heal. I’m not a down and out kinda girl. I’m constantly on the go and on the move. This stillness is going to be difficult for me. The stillness is what scares me. If you’re the praying type, I could use some encouragement in this area. Just that I will have grace for myself and not worry so much.
You guys, surgery is in less than a month. I have to go get my pre op testing next week. I work Monday so I’m thinking Tuesday will be the day! Blood work, chest x-ray and EKG.
My babies all started school. Emilia is rocking kindergarten. She literally twirled into the building. Owen’s killing it in second grade. Gabriel is loving all of the new challenges at Seaside and 5th grade and Julian’s trucking along in 7th. We have slowly gotten into the routine of school. After a summer of sleeping in it’s been rough! Barry’s been away for annual training and I’ve been flying solo.
I’ve started stockpiling for surgery. We are staying at an Airbnb before and after surgery. I’ve ordered my bidet toilet seat from BioBidet. I’ve got an Amazon order on the way! And have stock piled some bleachable wash cloths. I have 2 sets of button front jams, and a button front nightgown that’s definitely going to make me feel like a grandma but hey, it’s paisley. I’m trying to locate button front tops which isn’t something I’ve normally worn due to the sheer size of the tatas. I hate bulging buttons! Getting a couple zip up hoodies and I have a million pairs of cozy LuLaRoe leggings! My friend Brooke is sewing me a mastectomy pillow and a zip up hoodie with built in drain holders.
Somethings I still need to get (so I can keep track):
queen sized fitted sheets x 3
small bottle of detergent
zip up hoodies
If you’ve had a mastectomy, or DIEP FLAP what did you find you needed after surgery?