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 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??
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.
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?
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?
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.
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.
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!)