The things that don't come in the manual....

I keep reminding myself that I knew this surgery would be life-changing. What I didn't think about ahead of time was (I may add to this list ongoing)...

- Forget cuddling. For a long time..
- Forget good sleep... Everything is uncomfortable
- BYE carbs, carbonation. Swelly belly essentially happens when you eat too much, eat carbs, or anything else that is on the "no-no" list that I haven't pinpointed yet and means your belly swells, gets extremely tight around the incisions and is very uncomfortable
- hair loss :( My hair is FALLING out. Obviously, if I hadn't done this prophylactically I would expect hair loss from chemo or whatever, but I never expected to lose my hair from surgery.
- I haven't tried it yet but apparently maxi pads work better than gauze for the oozing.
- Hang onto all those old cami's - I've ruined several already by oozing through them.

- Stock up on Zinc, Vitamin C, Juven drink mix, and tons of protein snacks. I didn't get this info from my clinical team at all - this info all came from various sources on my own terms when trying to get my wounds to heal. 

- The weeds and other such things that are "extra" tasks in life - let them go out the window :( I've stressed over not getting EVERYTHING done like I would normally have things done and the stress just isn't worth it. Depending on others for everything is exhausting and there's absolutely no way to keep everything running normal. Let it go... 

- At five months post-DIEP, I'm not 100% but I'm 75%. Mostly tightness/soreness in my belly. 

- The emotional component of this journey is just as exhausting (if not more) as the physical component of this journey.

- Having strong legs and a strong back ahead of DIEP will REALLY help!

- The anticipation of BMX and DIEP was much worse than the surgery itself <3

Made it to the DIEP side :)

I can now say it, too :) I made it to the DIEP side.

Doing ok... It's been a pretty rough road. My surgery was 17 hours on July 21. I woke up in PACU around 1am and remember hearing the conversations among the team about getting me out of PACU to ICU as soon as possible (probably because they were tired!). My doctor is so awesome that she contracted with a device to monitor my flaps ongoing. She could monitor my flaps from her phone with this device. The only problem is, my flaps are small (because she did a great job) so the machine couldn't get a good reading. So it alarmed ALL NIGHT LONG for three nights.

My care team in ICU was amazing. I was treated like a queen. And Dr. Cochran rounded, came to see me every day at least once. She's a perfectionist, which I SO appreciate! I was discharged Sunday, on Post-op day 5. Since being home (today is Thursday), I've had THE best nurse, Vaida :) She really hasn't left my side, waits on me hand and foot, and genuinely cares about my healing SO much. I'd be lost without her and I get teary just thinking about it. So enough of all that..

Did I mention this is a life-changing surgery? I sleep reclined and will probably for the next several months. Once I don't have to be reclined anymore, I have to sleep on my back for a bit longer yet. I will also do away with carbs and anything with carbonation and move to a plant-based diet. AH!

Otherwise, I'm doing ok. Each day gets a little bit better. I thought I'd try and get off my pain meds so I tried that yesterday and regretted it by bedtime. I'm just not ready yet. In the meantime, I'm trying to figure out how to nap during the day, stay asleep at night, and somehow get up without my belly and chest screaming at me :) As long as I'm sitting down (besides the sore butt - I didn't get that memo previously), I feel OK. I've definitely learned what it means to "netflix n chill" LOL.

Ready, Set, DIEP!

HOLY smokes! My big day is so soon. I got my COVID test today and of course I'm crossing my fingers it's negative. I feel like I've just been coasting the last 2.5 weeks and I haven't done the nesting, the list-making, etc. that I did prior to my first surgery. Probably good because there's not much I can do, anyway. Good thing I'm a planner :) I guess most things are still taking care of themselves.

I met a new friend who is also going to the DIEP side on Tuesday with me. Her name is Tracey. It's nice to have someone who I'll be able to connect with and share stories.

I cooked for the first time tonight since surgery. Maybe I shouldn't have, but damn did it feel good! Vaida and I just don't have quite the same...cooking interests :) I LOVE cooking! I went out to the garden, picked a few eggplant, and whipped up some deliciousness - eggplant, red onion, fresh herbs, quinoa, marinara OHH LA LA (see my pic for more fun!).

I'm doing OK, just getting nervous. I'm SO ready to be on the other side. Several folks have actually said the PMX was worse in terms of home recovery than DIEP. We'll see. 

My tiny support circle has been nothing short of amazing and I'm SO grateful <3

First one down, how many to go?

I'm Post-Op Day (POD 2). I wish I could tell you that I feel great! I'm pretty uncomfortable. Starting back with Wednesday, though, because I intended to write the day before and the day after.

Wednesday, the day prior to surgery, was spent last-minute doing everything- nesting. Went to bed feeling great around 11 that night. Woke up Thursday around 5 am, again feeling great!

My surgical team was phenomenal! My surgeons are Dr. Tam Mai, General Surgeon, and Dr. Abigail Cochran, Plastic Surgeon. Dr. Andy Kim was my anesthesiologist and did a phenomenal job. I think I look pretty good, so far. My worry is being numb, will I know if I'm starting to have a complication? My incisions are underneath, which is great, but I can't see them. Hoping for the best.

Vaida has been the absolute BEST nurse a mom could have. I really don't know what I'd do without her.

Yesterday, POD1, was rough! Super rough. I had a really, really hard time sleeping Thursday night, Friday daytime, and finally got some sleep last night. I haven't slept much today and fireworks will probably pop through the night but I feel best when I'm sleeping.

I can already tell, it's going to require diligent effort to keep my glass half full these next few months. <3

Getting closer

It's June 14, 2 days before my initial surgery date. However, my surgery has been moved back to July 2. We're breaking the first surgery into 2. So on July 2, I'll have my double mastectomies, tissue expanders placed, and they'll start on my nips!

I had awesome pictures taken and I can't WAIT to share them with you! Cheers to my gal, Sara, who did a phenomenal job. We'll take some more once I'm all healed and pretty again.

I feel like I'm getting ready! My to-do list is getting smaller but these next 2 weeks might just be what I needed to get the entire list taken care of.

I'm out!

Helpful Links

What is a previvor?

What is the BRCA2 Gene?

More about BRCA from the American Cancer Society

Resources by state (Illinois)

What is DIEP Flap?

Eating during cancer treatment - cookbook!

Clothing and other post-mastectomy and cancer resources - Global

Medical bill tracker

How did you prepare?
- My list
- The Blessing Project

 

- DIEP Flap Support Group on Facebook
- Amazon Wishlist
- Winters Gift

HOLY CRUNCH TIME!

May 26, 2020

OMG, it's so close! Since I last wrote, I've gotten SO much accomplished but still feel SO overwhelmed by what I still need to get done. If you know anything about me, you know how much I love (and thrive on) lists. Well, here's my list(s) :)

It's totally a work in progress! But we're now 21 (OUCH!) days out and I need it to help me stay on track. I'm hoping to have just about everything done by June 10 so I can chill. Hopefully ..!

https://docs.google.com/spreadsheets/d/1-HZI9oCMN84mI7jRdTUKPa8aUzgR2E42YFAAcpUk8I4/edit?usp=sharing

I had my mammogram and MRI done today. And then I missed a call from my general surgeon's office at 6:18pm and couldn't get back to them. Ugh. But, I know my mammogram was read right away and everything looked good so my fingers are crossed. I see my plastic surgeon tomorrow, however...

She's feeling hesitant about doing my surgery in the way we initially planned :( At least, that's how she felt the last time we talked. I'm so anxious to see how it goes tomorrow.

The plan was to do the following:

1. Bilateral mastectomies with DIEP - FLAP  - June 16
2. Tubes and Ovaries removed 6-8 weeks post June 16
3. Cosmetic touch-ups and finish reconstruction 6-8 weeks post Tubes and Ovaries

https://www.breastcancer.org/community/podcasts/breast-surgery-covid19-20200406

See the problem? My OB/Gyn, Primary Care Provider, Genetics Counselor, and General Surgeon all feel it's better to move forward now versus later due to the unknowns ahead along with the upcoming flu/pneumonia season we have every year. I was supposed to start this journey 5 years ago but due to insurance BS, I finally got the go-ahead and planning began October, 2019.

Katelynn, the best BFF ever! is hosting a "My Breast Friends" party a week from today and I'm so excited! She's asked anyone who can to help fill my freezer with freezer meals and I put together an Amazon Wishlist of items others have recommended having on hand for a smooth recovery. Super grateful for all the support.

And lastly for tonight, the highlight of my day was definitely receiving my "Blessing Box!" Thank you, Dawn xoxox

That's all for tonight :)