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??
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.
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.
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?
Ok, so I’m being dramatic. But this is a big week, medically. Starting with today. I have a phone consultation with a surgery center in New Orleans at 1 o’clock. I’m definitely not procrastinating the things I’m supposed to do by writing a blog post, nope, not me! I’m anxious for this phone call even though realistically I know that there’s nothing specific about my case/body that they’ll be able to tell me. It’s supposed to last close to an hour. I am not quite sure what we’ll talk about for that whole hour but we’ll see!
Thursday, Barry and I are heading up to Birmingham for three appointments. Mammogram first, specialist second and then MRI last. I’m so incredibly grateful for my friends that have volunteered to shuttle my kids and especially for Geri. She is getting up Bondi early to take them to school and of course, it’s Thursday. Emilia has ballet. Not an easy day like M/W/F but it has to be on a ballet day! Ha! She’s excited for the challenge and my kids are stoked to have their actual favorite person watch them. Owen even suggested that I could stay in Birmingham for like two weeks if I needed to. (He totally loves me.)
I will gladly accept any and all good vibes today and Thursday. If I’m being honest, I’m afraid for Thursday. Not for the tests themselves. I mean a mammogram certainly won’t be FUN, and sitting in a tube for 45 minutes listening to a disjointed symphony won’t be FUN either but I’m terrified for the results. My cousin was my age when she was diagnosed with breast cancer. There’s this voice in the back of my head telling me it could be and it’s getting progressively louder the closer to Thursday we get.
If all goes well on Thursday, I am hoping to schedule my surgery for early September. There are a few reasons for my desire to schedule it so ‘far’ out and most have to do with my kids. It’s almost summer vacation already. I mean, I just paid for my kids’ dance recital costume! It’s happening faster than I can imagine. I don’t want to spend my kids’ entire summer stuck in a recliner. (Also, that’s something I’ll get to shop for in the future, apparently it’s the most comfortable place to sleep after mastectomy!) I want to be able to take them to the pool, or the beach, or miniature golfing. Or be able to drive them to the store for food. I know my recovery is going to be kind of intense. It just makes the most sense to me to wait until then. I know Barry will help as much as possible and I have a hood full of people willing and wanting to help. I also want to be able to rest and recover and that just isn’t happening with my kids home. If the flu showed me anything, it’s that when they’re home mama doesn’t rest.
Thanks for reading and I am accepting good vibes from now until eternity 🙂