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 💜💖🩵