It is surreal that it has been close to four years since I last wrote. And wow – what a four years it has been! Though I think that goes for everyone… global pandemic says what?!

It is even more surreal that today I am celebrating my 10 year “Boobiversary.” August 6, 2013 seems like it was such a long time ago, but at the same time it feels like the years went by in the blink of an eye. I am still grateful every day that I had a preventative bilateral mastectomy, though I will admit I look at 25 year olds now and think – I was so young!! But oh, I was determined. And that has not changed in the last decade. Here’s a recap of the last few years since my last post:

2019-2020

So initially all was well after my unexpected exchange surgery when my implants were recalled by the FDA. But as I healed and got back to my normal, active life I realized they were not, in fact, fine. Back in 2013 when I had my mastectomy, it was common practice to have implants placed under the muscle with Alloderm, which worked great with textured teardrop “gummy bear” implants since they stayed in place. But when they were exchanged for smooth round implants, the struggle was real. I had severe animation deformity, which is super uncomfortable and really interfered with my ability to be active – like, I couldn’t open tight screw top bottles let alone do push-ups. And aesthetically, it was… not great. Not great at all. I lived with it for awhile until I finally gave in and reached out to my wonderful plastic surgeon. We had a long discussion weighing the pros and cons and ultimately decided to proceed with surgery (really surgeries plural). This was in December 2020, peak of the pre-vaccination pandemic, and so deeply overwhelming to be facing again that I didn’t really share with many people.

I don’t say this lightly, but the first surgery was honestly more grueling than my mastectomy, as I had my pec muscles reattached so my implants could go over the muscle, as is now common practice. This almost 5 hour surgery involved 4 drains for 3 weeks (again), expanders (again), 113 packs of sutures (a record for my plastic surgeon), and 4 nights in the hospital. I won’t sugar coat it, it really sucked. There’s something to be said for ignorance is bliss versus knowing the suck that is coming of drains and expanders.

My parents (and my pup!) are again the heroes of this chapter. It was definitely not one of my favorite Christmases. But looking back, I am SO glad I did it. I had expanders for 3 months and my exchange surgery for my permanent implants (Allergan 520 mL smooth round moderate profile) in March 2021. They are SO much better and I have no restrictions (aka no excuses for not doing push-ups in BodyCombat – ha!) It took awhile to get my pec strength back, but I did and I am so happy with the results, both functionally and aesthetically.

2021-2022

This blog has primarily been “boob focused” up to this point, but as I inched closer and closer to the pivotal age of 35 and the pandemic allowed for more than enough time for thinking (okay fine, and overthinking) I knew it was also time to realistically think about my increased ovarian cancer risk, beyond my screening ultrasound/labs/gyn-onc visit every 6 months. So with that, I embarked on freezing my eggs. I have a whole new respect for the world of fertility treatments – it is quite the process! Unfortunately, you can only test for genetic mutations in embryos (not eggs) so given the 50/50 chance of passing on my mutation, I underwent 2 cycles/egg retrievals in November 2021 and March 2022. 38 pills, 30 injections, 11 lab draws, 8 ultrasounds, and 13 clinic visit later, I successfully froze 34 mature eggs so I can utilize PGT-M testing with optimistic chances/hope (no guarantees) for success down the road.

Side note: While I feel like it’s improving, egg freezing is still a rather taboo topic. If you have questions, please do your research! https://eggwhisperer.com (and her Instagram page and podcast) were invaluable resources! I’m also happy to answer any questions – I’m an open book!

Other than that, I continued and continue with my (admittedly exhausting at times) cancer screening appointments:

• Breast: monthly self exam, annual visit with my breast surgeon

• Ovarian: every 6 months CA-125 lab test, transvaginal ultrasound, exam with my gyn-onc

• Pancreatic: annual MRCP (fancy MRI w/contrast)

• Melanoma: every 6-12 months skin check with derm, every 4 months eye exam for ocular melanoma with my neuro-ophthalmologist (increased frequency because of my shunt/neuro history)

2023

I turned 35 in January in the absolute most perfect celebratory way ever – a trip to Mexico with my longtime bestie and a PowerPoints and Potatoes themed party with my amazing friends and family! It was truly a day I will forever cherish.

Earlier this year I got a call from UT Southwestern (where all my specialists are) that they had opened a cancer prevention clinic for patients with high risk genetic mutations. The concept is really quite brilliant: once a year, you meet with a genetic counselor, oncology nurse practitioner, and oncology-certified nurse to make sure you are doing everything possible to not get cancer. I went to my first appointment in May and it was a great experience to have a holistic view of my risk management, and also validating that I’m doing everything “right.” It also allowed an opportunity to discuss the thoughts on ovarian cancer risk reduction surgery that had been swirling in the back of my mind, which brings me to this week.

After much research, soul searching, weighing pros and cons with my awesome new gyn-onc surgeon, and allll the written and verbal processing (thanks village – you know who you are!) I am having a preventative bilateral salpingectomy (fallopian tube removal) on Thursday. It’s weird to think how many times I said before my mastectomy “oh the boobs are an easy decision! It’s the ovaries that are hard!” (Because of the obvious fertility-related implications, as well as impact of losing estrogen). However, there have been many studies come out in the last few years that show that most cases of ovarian cancer start in the fallopian tubes. This surgery will allow me to reduce that risk and delay my oopherectomy (ovary removal) for a few more years thus delaying surgical menopause and the health impacts of losing estrogen, while still allowing me to have kids if I want to via IVF with PGT-M testing so I do not pass on my mutation. Suffice to say: Science really is amazing!!!!

It is a pretty straightforward laparoscopic surgery and I am hopeful for a smooth and relatively quick recovery. Mentally, I am MORE than ready to be done with it! Other than all the ongoing screenings, this will hopefully buy me more surgery free years and that is the greatest feeling.

So, that is my much overdue update. Amongst all this, I successfully completed my PhD in May and went on a life-changing trip to Greece in June. Some of my amazing “Greece Girls” will even be joining me in Pennsylvania in October as I celebrate my 10th Boobiversary by again walking with my Aunt Peg and family in the breast cancer walk like I did the October after my mastectomy in 2013. Needless to say… ALL the feels!!! I seriously tear up just thinking about it and can’t wait for this special day.

I very much now view my life as pre- and post- PhD/Paros and am so very excited for this next season ahead which includes the peace of mind that will come with this surgery. So with that said… LET’S DO THIS!!!

As always, thank you for reading and for loving and supporting me throughout this journey. I am eternally grateful 💜💖🩵

Whew! What a whirlwind of a couple weeks it has been! I was overwhelmed by the response to my last blog and was again reassured why I chose to be so transparent and vulnerable with my journey. It was surreal and nostalgic to hear from “BRCA sisters” from years past and friends both new and old. And I was absolutely astounded when I was fumbling around with the new blog app to find this:

WHAT?! My blog has been visited over 110 THOUSAND times by 62 thousand different people?!?! That took awhile to process!! I’m still shocked but am so grateful to know that for as therapeutic as it has been for me to share, it’s also out there helping others going through a similar journey and I’ve been able to pay it forward like others did for me.

The week before Thanksgiving was kind of a blur getting everything ready for surgery and wrapping up loose ends with work and school, while also celebrating this wonderful season of gratitude and the final pumpkin-themed everything of the year. Oh, and then decorating for Christmas so I would be holiday ready by the time I got back home! And let’s be real, getting in as many rounds of BodyCombat and spin classes as I could, complete with a “SquadGiving” ride! It’s only been a week since I’ve been “banned” from the gym and I’m already going a little stir crazy – ha! My amazing work family sent me off in the most wonderful fashion and I was enveloped in love from every angle, for which I am forever grateful! I also appreciate our shared sense of humor! 🙂

As for the actual surgery, I was first case last Monday (November 25) so it was a super early morning, but the benefit of the 0530 arrival time was I was back home at my parents by 10 AM! My team was awesome and everything went perfectly – Dr. Teotia (my plastic surgeon) was amazing as always and I am the proud new owner of Natrelle Inspira SCF-695 (smooth cohesive), round, silicone implants. My old/recalled implants were removed without any problems – Dr. T did say there was some fluid around them, but nothing to be concerned about and the pathology report was negative, thank goodness! So that is a huge relief to have behind me. My left side was ornery per usual, which required a revision to the pocket and a little more work (and associated pain!) than expected, but they look and feel fantastic. As anticipated, they are definitely a different shape and infinitely softer than my previous textured teardrop implants, which I am slowly but surely getting used to.

I was given strict instructions not to raise my arms above my head whatsoever for 72 hours so everything would settle and nothing would be pulled, so I embraced peak lazy! My parents never cease to be incredible and made sure I had everything I could possibly need, and more. We made the most out of a dreary weather week catching up on shows and watching holiday movies. I am so grateful for them both! And for my ferocious little guard dog who took “protective instincts” to a WHOLE new level. Bless his little puppy heart he never left my side (really my lap!) and made sure everyone knew he was ON ALERT!

I had my post-op appointment with Dr. Teotia this morning and everything looks great! My incisions are healing nicely and the new implants will continue to settle and go through the “drop and fluff” process over the next few weeks and months. The strict orders to do as little activity as possible for the 6 weeks after surgery were again reiterated and lest everyone around me think I can’t follow directions and be a compliant patient (#rude), I know how important it is (trust me, I do!!) While of course I’m counting down the days until I’m cleared to return to activities in early January, I’m still a little sore and get fatigued more easily than normal, so my plan is to take things day by day, hour by hour, and enjoy the holiday season… distractions welcome! My next follow up appointment is in 3 months – woohoo! I’m so glad to be “on the other side.”… again.

I cannot emphasize enough how incredibly grateful to each and every one of you that has been a part of my story. I am so overwhelmed by the kindness shown to me in the form of visits, phone calls, texts, gifts, flowers, coffees, and food, to name a few! Thank you for supporting me through this unexpected detour in my journey – while I can’t wait to put it behind me, I am again humbled and reminded of the beauty of the human spirit.

Happy Holidays and Cheers to 2020!

It’s absolutely mind-boggling to me that it’s been over three years since I last posted and over six years since my prophylactic bilateral mastectomy. Time sure flies! I keep renewing this blog each year because I still get emails that show people are looking at it (thanks Pinterest!), so I like to think it’s out there helping someone, somewhere, as they go through a similar journey. And here I am, unexpectedly thrown back into the thick of my own BRCA journey. I hesitated to share this or update the blog at all, but as I read back through some posts I remembered the promise I made to my (young, determined, 25 year old) self to be transparent in my journey and to tell it like it is. So, here I am.

As a quick catch up, since 2016 when I last wrote, things have been busy, but great! I started a new job, finished my master’s degree, taught for a year, started my PhD, bought a house, traveled, became an aunt x 2, laughed often, loved a lot, found the most amazing gym family and stress release in BodyCombat (and more recently, spin), and a little 8 pound Maltipoo found his way into my heart and I have more than embraced the role of dog mom.

Healthwise I’ve been doing well, aside from some unexpectedly stressful but benign cysts found on my now bi-annual (since I turned 30) ovarian cancer screenings and an unanticipated foot surgery for an old fracture that slowed me down a bit! But those were little blips in the radar at this point. I happened to be in Mexico for my 5th “Boobiversary” last year and posted this to commemorate the day:

“Not quite sure how it’s possible, but today we cheers to the 5 YEAR Anniversary of my bilateral prophylactic mastectomy! And what a journey it has been!” #BRCA2 #previvor #neverbeenbetter #thisis30 #grateful #science #knowyourrisk”

So needless to say, all was well. And then, this popped up on my Facebook feed out of the blue in July:

https://www.fda.gov/medical-devices/medical-device-recalls/allergan-recalls-natrelle-biocell-textured- breast-implants-due-risk-bia-alcl-cancer

I clicked on the link with trepidation; I could tell from the title the FDA had recalled certain kinds of breast implants. And then that first line reads “The FDA has identified this as a Class I recall, the most serious type of recall. Use of these devices may cause serious injuries or death.” Like that’s not terrifying to read. And why yes, those are the implants I have (Natrelle 410s). Because of course they are. I didn’t panic, in all honestly I actually laughed at the irony: the implants I had as a result of a surgery to PREVENT cancer can now CAUSE cancer?! Is this for real?! Yes, yes it is.

A few days later I reached out to my plastic surgeon and he confirmed I needed to come in. I saw him in August and we discussed the risks/benefits/alternatives, and there was/is really no question: the implants need to come out. Yes, the risk of lymphoma is low, but it’s honestly just not worth taking any risk, particularly in someone who is already considered to have a high risk of developing cancer. Since it wasn’t incredibly urgent, I chose to schedule surgery around the holidays when I would already be taking time off work – specifically a week from today on November 25th. So, yet again, I find myself having surgery the week of Thanksgiving – this is the third time in six years, if anyone is counting. Thankfully it should be a very quick procedure in day surgery to switch them out, of course with some underlying fear about my shunt being in close proximity that will always be there! The new implants will be a different shape and material (round, smooth silicone versus anatomical/tear drop, textured silicone) which will supposedly change the shape a bit, but otherwise I have a few weeks of activity restrictions and then should hopefully be “good as new.”

It’s been a weird mix of emotions to find myself back on this journey when BRCA has become such a small part of my life that I really only think about every six months when I undergo ovarian cancer screening, and only then for a minimal amount of time. It’s amazing how many people have come into my life “post-mastectomy” that don’t know this side of me; I’ve shared my journey and this part of my identity more in the last three months than I have in the last three years! It’s also a disconcertingly vulnerable feeling, almost like back to pre-mastectomy when I felt like I had ticking time bombs inside of me. Maybe even worse, since they aren’t “mine,” despite six years of trying to think of them as part of me and finally getting to that point, only to find out they’re dangerous too. It’s frustrating, because I’m so completely healed, the scars are faded, there’s no activities I can’t do – exhibit A being the Daddy/Daughter landscaping adventure of this weekend where I was hauling bags of rocks after a sweat fest of a spin class complete with weights without thinking twice about it!

To be completely thrown back into this world without warning is bizarre – the smell and deja vu walking back into the plastic surgery clinic alone was unreal! I have to laugh that the most common response I have gotten is “you’re having another Boob Voyage, right?!” It’s warms my heart that others have just as fond memories of that day as I do! But the answer is no, unless it’s an impromptu excuse for a girls night – ha! A lot has changed since I was 25 and had my first BRCA-related surgeries, but at the same time it feels like nothing at all. At the end of the day, this is just an unexpected hurdle that I will overcome, just like everything else. I will bust out my dusty recovery pillow, review all my preparation lists, and take it one day at a time (or try to, at least!) Thanks for being a part of my continued journey; I am forever humbled and grateful for the incredible people and never-ending support I have surrounding me.

It’s crazy to think my prophylactic mastectomy was over a thousand days ago. 1096 to be exact. In many ways it seems even longer, in others less. But no longer does it feel “like yesterday.” Thoughts of surgeries, boobs, and implants are generally reserved for when I’m talking with someone facing a similar situation. Not my everyday normal. And that’s delightful. 

3 years later I have no regrets. Everything from my surgery is healed. I’m healthy and happy, and more than anything grateful. I’ve only seen doctors for planned, preventive visits for over a year. I’m busy with work, grad school, family, and friends. What more could a girl want?

I didn’t want this day to pass without acknowledging it, but rather boring I know I am. And I wouldn’t have it any other way! 

Well, it took me a bit to remember my password, but here I am, checking in as I celebrate my **second** Boobiversary. And truthfully? I just can’t process that. It’s just crazy!!!!!

I’ve been a stranger to this blog on the front, and at times contemplated shutting it down, but always end up hitting that “renew” button with the hope that some anxious young woman will happen upon it and leave feeling justthismuch better about what’s ahead of her. And then I found out last week my Must-Haves list is the first result when you search “mastectomy” on Pinterest. Say what?!?! That was pretty freaking cool to learn!

And so I stay here, present on the blogosphere, hoping that I’m serving a purpose. But admittedly, it is a huge relief being on this side.

How am I doing you ask? Pretty darn fantastic. As I reflect back over the past year since I last posted, it’s a little overwhelming to think of how many things have happened! In the last twelve months I gained a sister (in law), had a revision surgery, was in two dear friends’ weddings, moved, started grad school, and went to Europe, to hit the major points!

Healthwise, things are going well. Quick recap of the year: my CT and shunt check with my neurosurgeon in September went great – no problems since the shunt revision thank goodness! And I finally graduated to appointments more than 3 months apart with my neuro-ophthalmologist. Needless to say, I was on a short leash! I am beyond happy to have that unexpected ordeal behind me! My left implant continued to be moving around weird, so I had a quick surgery in November to exchange it for an entirely new implant (same shape/size/style just a new one) as well as another round of fat grafting. It was a pretty quick recovery in time for Thanksgiving! Ovarian cancer surveillance is status quo – my doctor is wonderful and everything checked out well.

I did have a scare in February with an inflamed lymph node in my armpit that was a result of having had surgery there. But I have to say how impressive (yet scary) it is how quickly I got in – I found the lump, called the Breast Center, and was having an ultrasound in less than two hours. Reassuring, yet intimidating to know that timing is because of my “high risk” label. We’ll continue to monitor it and I see my breast NP again next month. If anything, sitting in that radiology waiting room confirmed to me how much it was the right decision to have surgery – it’s physically nauseating to think about having to do that horrible waiting game every 6 months (or more).

I saw Dr. Teotia, my wonderful plastic surgeon, today of all days – it just worked out that my next appointment fell on my Boobiversary! Meant to be I suppose!  Everything looks great… Yay!! It was nice to “celebrate” today with someone so integral to my journey! And I take credit for introducing a new word to the nurse’s vocabulary! 🙂

So that’s where I’m at, 2 years down the road! Happy with my decision, happy with my results, and really just happy with life and grateful to be where I am and for all the people that helped me get here! It’s a wonderful feeling indeed.