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??
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?
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.
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!)