I can't believe I haven't shared this here yet

My top surgery was a success! I'm extremely happy. Below will be an archive of my healing journey which I will continue to update. There will be graphic photos - you have been warned. If you're looking for an "everything else" update, that would be this blog post. Feel free to share this with anyone who's looking to or just got a double masectomy as a reference.

Because this post is longer than usual I will be using sub headers

Some of you may remember an older blog talking about my consult brielfy. I joined the waitlist for Dr Rachel Bluebond-Langner sometime in 2021. She's an extremely popular pick and my personal choice since she specializes in cases with EDS (ehlers-danlos syndrome) which can cause a whole bucket of healing issues - some of which I experienced with my spinal fusion in 2018. August of 2024 I met with her and we discussed an action plan: she informed me that I would need to switch to a new insurance in order to book the operation and told me since my BMI was just around the cusp of 40 she'd prefer I lose "as much weight as possible" with no clear number. Switching insurance would have to wait until the new year so in the meantime I met with my endocronologist who recommended I start metformin to help manage the weight loss and I also began seeing a dietician.

I started to become mindful about the foods I'm eating and started seeing some slowish progress. I also began getting a lot more serious about school, which for a while was really stressing me out but I made it through ok. There wasn't really anything to do until the new insurance - Cigna - kicked in, which unfortunately took longer than anticipated. Finally at the end of January of the new year I got the fated call with my surgery date being set at June 9th.

Some of the more annoying parts of the whole journey began to show their ugly faces here. The entire team was great and really thorough ... maybe too thorough. They would request documentation from different doctors, then request changes one change at a time instead of all at once so I'd keep having to go back and forth getting updated paperwork. It was nice they were being meticulous and detail oriented, but I do wish they would just have told me everything they needed in the first place so it didn't end up taking up so much time.

At my first pre-op appointment in February we went over my insurance plan and talked more in detail about my goals. I decided to opt for no nipple grafts so that the healing would be easier. Here we also discussed that I would need to take six weeks off of work. They also met my designated caregiver (my mom) and we talked about how she could apply for paid family leave in order to take care of me and accompany me to the doctor appointments. At this point I had lost some weight and my bmi was around 37 where it would pretty much sit until the operation. They also told me a list of things not to do - LISTEN. They DRUG TEST YOU, so follow the instructions!

They also told me I would need clearance from my PCP

This would turn into a NIGHTMARE. I met with my PCP who did all the basics. Then, for some reason, she decided my tonsils were actually too big and made me see an ENT

Now, listen. I do have big tonsils. I snore. Sometimes, I breathe heavy. In all reality, they should probably be removed.

BUT THIS WASN'T THE TIME!!! I ended up on this whole expensive side quest trying to get my PCP to sign off on the clearance. The worst part: I'VE BEEN OPERATED ON BEFORE! So we already know it's fine! It was super stressful and honestly just completely ridiculous. In the end they wanted to charge me a completely insane number to get a sleep study so I found a different doctor to sign off on the clearance and everything was fine. Sigh

The second and last pre-op appointment was in May. Here we reiterated all of my wants and goals and went over some questions before I was given expectations for the day of. With Bluebond even though it's an outpatient operation you stay a night in the hospital

I also finally got the estimated cost around this time. In my case, I had met my deductibles and had a remaining coinsurance amount which became the amount I owed out of pocket for the operation. Pro tip: Once approved this amount won't change even if you see a doctor or pay for something that lowers your coinsurance that's due, so be very wise about how you book everything.

Since my surgery was on a Monday I got a call the Friday before with the time I needed to arrive. You can expect to go into the OR around two hours after this time. Me and my mom went to the hospital and checked in. They did a final drug test and made me brush my teeth again which apparently prevents germ spread in the OR. I got marked up and taken to the back

I woke up around 12:30 (speaking exclusively ASL for some reason ... the brain is strange) feeling loopy. Family visited periodically (cycling through as the hospital is strict about the two visitor rule) and I went on a short walk with the nurse and then another later. I ate a sandwich around 6:00 which made the nurses happy

Around 8:00 I was still feeling good and I got out of the hospital bed to sit in a chair. Me and my mom were chatting when I suddenly became unresponsive. I had experienced a hematoma (which is when blood pools) which caused my blood pressure to drop dramatically. Luckily the hospital staff reacted quickly and got me back in bed with some fluids and began emptying the blood. I lost a lot, so much that they put me on a blood clotting medication. As scary as the experience was they explained that hematomas are more common with this type of operation, especially with younger people. At this point to apply additional pressure they added multiple new layers underneath the surgical binder to make it tighter. I was monitored very closely but continued to look good and was discharged as expected the next day.

This was mostly boring. My mom stripped the drains throughout the day and the output did begin to taper off. My pain was honestly not so bad, I was mostly just really uncomfortable. My first post-op appointment was that Friday, where luckily they decided to switch me to the normal surgical binder which was way more comfortable. They told me that I could try gently rubbing my chest while looking in the mirror as a way to help my brain connect it back to me and relieve some of the anxiety, which actually really helped and made me feel a lot better. I was feeling good enough that I attended a local baseball game which was really fun

To be honest my biggest struggle has been sleeping. You have to sleep on your back, and since I have back problems (remember that spinal fusion?) it feels truly awful

Officially a week out and I was feeling ... achy. All the bruising was starting to heal which meant it was starting to hurt. I decided to try drinking golden milk which is ... an aquired taste, but did significantly help with the bruising

As the bruises started clearing the drain output increased, which I was told is normal. Basically after the "fresh" liquids are drained, the old blood built up in the bruised areas starts to loosen and begin draining. Once the bruising is gone there's a drop off in draining and this is when they're removed

Wednesday was my second post-op appointment and I was over an hour late. Thank you Manhatten traffic

Everyone was super understanding though and I was still able to be briefly seen. They told me I may experience a drop in draining on one side and that if it's ready to be taken out before my next appointment to just call. We also discussed starting PT soon

So far I'm really happy with how everything looks. I'll be even happier when the drains are out but I'm trying to be patient

This week was disappointing. All my bruising cleared up ... but the draining didn't subside. On top of that there was a record breaking heat wave in NYC which was an absolute nightmare. My blood pressure dropped really low again - I'm actually considering getting tested for POTS

Doctors that Tuesday was pretty disappointing too. Since the drains couldn't come out it was mostly just them looking me over. The tape came off, though, and it's interesting to see my chest with the new scar

Sunday the right drain lost suction and fell out (yes - literally fell out). It was as scary as you might imagine. Luckily that drain was already tapering off and was gonna come out in a few days anyway, so it's ok

Starting off rough

Got some lackluster news at the drs. The left side is the side that hematoma'd originally and since the right drain jumped ship its been consistently outputting more. I'm honestly really frustrated - the drains are gross, they have a god awful smell now and they look super weird under my clothes. They made it seem like the drains would come out in two weeks - three max - and now entering the fourth week I'm being met with shrugs

I wanna be clear: I don't want it to come out early and cause more issues. It's just annoying, and I hate it. I mostly hate the binder, which of course can't come off until a week after both drains are out. Meanwhile this drain is still outputting so much we're honestly not hopeful it'll be out next week, which'll mean five weeks of drains and six weeks of binder :/

Not to mention that I'm supposed to be starting the physical therapy. It's fine, but having to do the physical therapy in the binder AND with the drain is pretty ass

I also need to start job hunting which is a whole other ball game. I'm just stressed and tired ... still really disappointed I had to cancel anthrocon (which is also because of the drains..)

I know that logically in a month or so this will all feel so trivial compared to the freedom of being healed but GAH!!! Definitely struggling to see the light at the end of the tunnel

Ok so I guess my body was as frustrated as I was because Friday the 4th the left drain also fell out. These things aren't really meant to be in use so long which is probably why. Unfortunately, unlike the right side it was still outputting a decent amount. It was looking good until Sunday - then we noticed some bubbling and fluid build up. Not sure what's gonna happen yet.

Fluid was still building up so they drained some at the drs this week. I've been trying to stay on top of massaging when I notice fluid build up to help it drain but its been pretty annoying. It seems like being active, rubbing, and doing lymphatic drainage massaging are the three things helping drain the most. Dr said the binder might still come off next week even if they have to drain again so I'm very much looking forward to that! Also next week I start physical therapy which is really important. A lot of my arm motion range is returning and I've been able to wear normal shirts instead of just button downs - yay!

At the end of the sixth week I can submerge in water so I'm very excited for that. This weather has been straight evil

Will continue to update as time progresses. If you find this helpful, I have a Ko-Fi and the support would go a long way right now