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Previvor’s Guilt

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’t ever 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.

I don’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 fellow previvors I applaud you and honor your strength and bravery. For making the choice.

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Good Vibe Request

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.

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Birmingham

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. IMG_0345 2.jpg

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?IMG_0340.jpg

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. IMG_0344 2

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!

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ISO: caregiver

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?

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New Orleans Update

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. IMG_0017 2.jpg

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. IMG_0026

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!)

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NOLA

So, I had a really positive phone call with the charge nurse of the New Orleans facility. Since I’m cancer free and this is a prophylactic mastectomy and reconstruction (definitely thinking positively today!) I will be eligible for a nipple and skin sparing mastectomy. That means everything will look pretty much the same when all is said and done only better.

I will need to be in New Orleans for about 9 days total. a day or two before, three nights in the hospital after surgery and then on day 7 post op I’ll be released to go home. I’ll come home with (likely) two abdominal drains. She said since I’m relatively young and healthy the recovery time should be between 5 and 6 weeks. She said I won’t be able to lift anything but I should be able to drive pretty quickly. (I am so afraid of being completely reliant on everyone so this felt SO good to hear!) She said I would have to take it easy and rest but still move.

I also found out I’m a candidate for the type of reconstruction I wanted! DIEP Flap Reconstruction. You can read about it here! I might have to do an extended DIEP which just means a longer abdominal incision. They’ll not only use belly fat but my hip fat too! (BYEEEE love handles!) She said my surgery would last between 7-9 hours! There will be two surgeons, the oncologist surgeon who will remove every speck of breast tissue and then send it to pathology followed by the micro plastic surgeon that will do the reconstruction! Three months after recovery, I go back to NoLa for a night and have phase 2 done. Since everything is already going to look good (her words, not mine) it’ll just be fine tuning and LIPOSUCTION if I want it. Say what?? You’re about to see as much of my navel as an early 2000’s Britney video. Sorry, not sorry!

I am waiting to hear from their benefits coordinator/billing person to find out how much my insurance is going to cover but I think it’s a 100% doable figure for us out of pocket. If not I’m definitely not above a GoFundMe haha! Feeling incredibly grateful for TriCare right about now. In my dream world tomorrow’s scans show no cancer or anything sketchy and I can schedule surgery for 9/7. (7 is my lucky number, I realize that’s irrational but like, hey it’s my dream world.)

Things are all set for us to leave super early tomorrow! Still SO grateful for everyone that has volunteered to help with the kids and extra thankful for Nacho Mama, Geri for taking care of my punks!