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??
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.
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 🙂