Third Boobiversary

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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! 

Second Boobiversary

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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.

First Boobiversary

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One year ago today, on August 6, 2013, at the age of 25, I had a prophylactic bilateral mastectomy.  In a matter of just 6 short hours, I took my risk of breast cancer from 87% to less than the normal population.

In so many ways, it still seems a little crazy to say that.  It seems impossible that it’s already been a full year, but in other ways, it seems like it was even longer ago.

I’m truly struggling to find words to describe what it’s like to reach this point.  I’m feeling relief – at being a year out.  Excitement – of all the possibilities of my future.  Disbelief – that 365 days have already passed.  But more than anything, I’m feeling grateful.  Grateful for a massive cancer risk reduction.  Grateful for technology for even knowing I had that risk in the first place.  Grateful for amazing doctors that are incredibly skilled yet wonderful people, too.  Grateful for access to fantastic medical care and a fabulous medical team.  Grateful for a family that supported me every step of the way.  Grateful for parents who never left my side.  Grateful for friends that were there to laugh and to cry.  Grateful for a job and coworkers that redefined understanding.  Simple stated, just grateful.

What a whirlwind of a year it is to think back on!  Really though, it seems like I’m reflecting on almost TWO years from when I first thought about having this surgery.  There was the decision.  Then the first appointments.  Then all the waiting.  Then pre-op.  The (most amazing) Boob Voyage.  Then the surgery itself.  The negative pathology report.  The drains.  The first fill.  The transition back to real life.  The return to work.  The second fill (ouch). The “Fab”ulous-ness.  The walk.  And finally?  The long-awaited exchange surgery.  I’m so grateful that my entire experience went so well, despite the unexpected 6-month hiccup with my shunt.  No, it wasn’t all easy – three surgeries in a year?  Not fun.  But yes, I would do it all again in a heartbeat. Literally, no hesitation.  Sure there’s days where I’m still getting used to having implants (really only because of how pecs act when they’re outside of implants, especially when lifting or working out) or not having any feeling (this is just a bit scary of all things, like when I’m around hot things), but 99% of the time I don’t even think about the surgery.  And what a beautiful thing that is to say.

So what happens from here?  Well, I had my one-year visit (a little early) with my breast surgeon’s NP.  Gotta say – breast exam when you can’t feel them?  Super weird!  But she’s just wonderful and will follow me from here, and is my go-to with any concerns.  Of which thankfully, there are none.  I also follow up closely with my plastic surgeon from here on out, but I suppose that too is pretty obvious.  And then of course there’s the continued ovarian cancer surveillance, but that’s just a part of being BRCA positive.  And really?  It’s not too bad at all.

It’s safe to say that, while incredibly different from where I was this time last year, I’m in a remarkably good place in my life.  Happy.  Healthy.  Grateful.

First Boobiversary

LONG Overdue Update!

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I’ve been absent on the blogosphere for awhile now, I know.  And I wish it was simply because I was all done and everything was great and mastectomies and reconstructions were all in the past but… alas… it has not been all rainbows and butterflies.

I have gone back and forth over and over again about whether I should include this latest chapter of my journey on the blog, and I know I left off saying I would update and never did, but now that the chapter is closing, I’m ready to include it.  After all, I did vow to be brutally honest, and among everything else, this blog IS more than a BRCA/boob blog, it’s a blog about me. Random happenings (shit magnet occurrences one might say) and all.

So that said, here’s the recap over the past 6 months – I left much of the beginning out of my late 2013 blog posts since we didn’t really know what was going on, and if it was transient.  But now we do, so here I go. My only preface: this is an extraordinarily rare thing to happen.  I don’t even really like the word complication, because it’s so unlikely to occur – it really was just a perfect storm situation.  And one that my doctors, at a major academic medical center, had never seen before, and hopefully won’t see again.  SO please, if you’re a “BRCA babe,” or someone who is considering or having surgery, please don’t let this freak you out – I can’t reiterate how random it was, and you’ll understand quickly why.  Unless you have a VP shunt AND are undergoing a mastectomy and reconstruction… THEN shoot me an email!  I’ve yet to find the blog that outlines that predicament! :)

So yes, if you’ve read any of the archives, you know I have that VP shunt for pseudotumor cerebri, that I’ve had since 2006 without any issues.  And you know it’s been a problem from the very beginning of the mastectomy journey from MRIs to my actual mastectomy.  Well, that little piece of massively important plastic truly outdid itself this time.

In November I had my much-anticipated exchange surgery, got my wonderful new implants, and all went well.  However, as I alluded to in this post, I had some trouble post-op.  The Wednesday following my Friday surgery, I noticed that my vision was off and I was starting to get a headache.  I had had similar symptoms with anesthesia before so I hadn’t thought much of it, except at this point I had been off all pain medicine for 3 days.  As the day progressed, my vision got worse, and knowing “shunt protocol,” we unfortunately had to go to the ER.  Shunt failure is a very real problem, and one of my biggest fears – you never know when it’s going to happen.  I knew, however, that my shunt wasn’t totally defective – but something wasn’t right.  I compare it to trying to drink out of a bent non-bendy straw… you get some liquid, but not all of it.  In the ER I had x-rays and a CT scan, and it was decided that I would be admitted overnight for observation and for an LP (spinal tap) the following morning.  And yes, this was the night before Thanksgiving.

My Thanksgiving miracle the next morning, despite being in the hospital, was that MY neurosurgeon was on.  The same one who put in my shunt in 2006, who fixed my shunt during my mastectomy when it went right through my breast tissue, and who I still see every year for follow up.  He decided instead of the LP to do a chest CT, so we could see where the shunt was going.  It was harder to see than anticipated, since my silicone implants are SO opaque, but it appeared that my shunt was being compressed by the swelling of the surgery, which made perfectly logical sense.  So he came up with a plan to start me on my old pre-shunt standby medication (Diamox) to decrease the amount of fluid my brain would make while the surgery swelling went down, and I would follow up after and we’d go from there.  And thanks to a miraculous medical team, we made it out of the hospital JUST in time to make it to Thanksgiving dinner with Ruthie!

Fast forward a week where I felt absolutely, positively miserable.  Really, it’s all a giant blur now.  I ended up having the LP outpatient the following week, actually before I followed up with my plastic surgeon that afternoon.  Come to find out, I was experiencing LOW ICP symptoms (from the fairly hefty dose of Diamox) – further proving my “bent straw” theory.  I saw my neuro-ophthalmologist the following week where all this was further confirmed by him.  We decided to back off on the medication and see if the swelling would go down on it’s own, and that I would only take the medication if I have was having symptoms.

It seemed like things were evening out over the holidays, but when I saw my neuro-ophthamologist in January he could see, via my optic nerves, that my intracranial pressure was starting to creep up, and we restarted the Diamox at a low dose.  And this is where things start to get a little confusing.

In February I also saw my plastic surgeon for a non-scheduled appointment; graceful me had fallen on some ice and landed on my left arm.  My left implant was historically already a little iffy (remember this was also where I had problems with the left expander sliding around) and this made it worse.  At that appointment we decided just to watch that, but I also brought up another concern.  A few weeks before that, I had noticed a weird new crease in my right implant.  I kind of dismissed it, but the more I thought about it, the more I knew exactly what is was.  Sure enough, it was my shunt.  It had migrated and kinked, forming a perfect “S” shape.  And it all started to make sense.
I saw my neuro-opthalmologist the following day, who confirmed that my pressure was still elevated – he doubled the Diamox and we agreed I’d go back to my neurosurgeon to investigate the shunt issue.  I saw him a few weeks later (Sidenote: At the same time in March, I also saw my gyn-onc for regular ovarian cancer screening (ultrasound, CA-125, exam) and everything looked great!  She’s awesome, end of story.)  My neurosurgeon confirmed what we already knew – my shunt wasn’t draining right because it was wrapped around my right implant.  Only way to fix it would be to go in and remove the shunt and place a new one – we developed a plan that day that would keep the shunt entirely out of the boob area, and then began the orchestration of getting surgery scheduled.

I say orchestration, because I then saw my plastic surgeon for my regularly scheduled follow up, and we decided at that time we would complete a left implant revision at the same time as the shunt replacement, as Dr. T would already need to be there for potential shunt/boob problems.  We also decided to do some additional fat grafting.  So orchestration indeed – how often to neurosurgeons and plastic surgeons work together on the same case?  Oh, and throw in a general surgeon to – needed to laparoscopically tunnel my new shunt into my abdomen.  Thanks to some amazing schedulers, a few weeks later we had a date: May 6.  I chose it because it wouldn’t be terrible to miss work then, and I at that point I really wasn’t feeling THAT BAD.  It was bothersome, but it was manageable.

So I continued to follow up with my neuro-ophthalmologist really closely, but it was mid-April when the headaches really started picking up in intensity and my vision was noticeably worse.  At this point looking back, how I managed to function the last 2 weeks of April and first of May is really rather impressive as it is one giant blur right now.  The Diamox makes me lightheaded, constantly dehydrated, and feel not-great, to say the very least.  Perhaps, she says innocently, a bit whiny too (“caring” coworkers at work may or may have not developed the ICP:whine graph!  I laugh.  Because admittedly it was totally true!)  And the symptoms increase as the dosage goes up, which it did every time I saw my neuro-ophthalmologist, which was weekly leading up to the surgery.  Basically I should have bought stock in Vitamin Water!
Okay… I think that’s all the background I missed!  So, still with me?

So surgery.  On Monday the 5th I had pre-op which took awhile but went well.  I notoriously don’t have great veins to start with, but the Diamox being a diuretic made them even worse.  It was decided then that I would need a midline catheter placed for the surgery the following day.  After we met with the neurosurgery NP (she’s awesome, and totally remembered me from ’06 which is impressive in my book!) Mom and I went to get some Tex-Mex for Cinco de Mayo and then went to see Decoding Annie Parker with Bright Pink.  It was an excellent distraction for the night before surgery and WOW what a movie – definitely hard to watch, but so good.  Mom looked at me on the way out and said “I’m so glad you had that surgery!” and I couldn’t agree more.  We got caught in some epic traffic on the way home, so it wasn’t long before my alarm was going off at 4:30 the following morning.

I was (obviously) the first case and everything went so incredibly smooth it was like an art – everyone kind of stood there in awe that we managed to get 3 surgery teams in the same place at the same time without a single missed beat!  I had the midline placed, and then the parade of doctors began, as well as the many markings by each team.  Honestly this is all a blur too (and before the Versed thankyouverymuch!) because honestly?  I felt like complete crap.  I would never admit it then but man, that was freaking rough.  So there’s no pictures, no Facebook posts, none of the things that went along with my yay-I’m-choosing-to-save-my-life-in-advance preventive surgeries.  It was just different going into surgery feeling rotten.  My roommate and Ruthie were of course there with Mom, and thank goodness.  We were off to the OR about 7:30 or so, and I didn’t see them again in my room until after 2.

In the end, it took 5 hours of OR time, 3 surgery teams, and 9 incisions, but they pulled it off without a hitch.  A small portion of my head was shaved, but they were able to do everything through a previous chest incision AND get the old shunt out in one piece – a feat we weren’t sure would be possible!  The new one is completely on my right side FAR away from my implant.  Dr. T fixed my left implant so it doesn’t slide AT ALL, and did a beautiful job with the fat grafting – I’m so pleased already.  I did have to stay overnight, but it really wasn’t too bad and the nurses were great.  I definitely felt like I was hit by a bus by the time it was all over!!  Though I must say – even the next morning I told my neurosurgeon I didn’t know just how badly my shunt was functioning until it was fixed – it was amazing how much better I felt already!!

We headed home the next morning and I took it easy at my parents for about a week.  From the top of my chest to almost my knees (because of the fat grafting harvest) I was sore, let alone the lovely (not!) leftover laparoscopic air pain, but I was on the move pretty soon.  And really, feeling better overall made it all seem minor in comparison.

Unfortunately you can’t go off Diamox cold turkey, but we’ve made serious progress weaning it down since my surgery, and I hope to be off of it by the end of the month – now that my shunt is working flawlessly I’m having low pressure symptoms again (mild headaches when I’m standing and slightly blurry vision).  On Monday (the 19th) I had 2 post-op appointments. First was plastics – and of course a big hug from Dr. T!  Everything looks great, I had stitches removed, and we discussed a few other things that will be addressed when I see him in 2 months – mainly some touch-up nipple tattooing (they can do this in the office) that we’ve talked about for awhile now.  Oh and of course my plastic surgery life plan (ha!) for flap surgery post kids – but that’s way far off of course.  And then I saw my neurosurgeon – I’ve had the same fellow this whole time, from Thanksgiving to surgery to now, which doesn’t always happen.  He’s so untypically neurosurgeon and just wonderful – I could tell by the waiting room he had a rough day in clinic before and after me, so as he was leaving I stopped him and said “this is a WIN! You don’t always get those around here!” and all he could say was “you’re so right” with a big smile.  I love making people’s day!!  Needless to say, everything looked fantastic and my neurosurgeon legitimately told me to “get out of here!” :)  We’ve moved my yearly CT/follow up to September now instead of July since that’s right around the corner.
After the last few months of frustrating symptoms culminating in a fairly intricate surgery, it was such a relief to have happy, good news filled follow ups!  I saw my neuro-ophthalmologist yesterday, and I am in fact set for the final stage of Diamox weaning which is such a HUGE relief.  Hopefully this time next month I will be OFF of it and back to my usual!!
Major kudos if you made it this far… I know it’s long and complicated!  But now it’s documented, and more importantly, it’s DONE.  I feel like I can finally heal from the whole mastectomy journey the way I wanted to in the first place, and am looking forward to the rest of this year so very much!  Thanks for stopping by, as always!

Half a Year

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6 months ago today, I had a prophylactic bilateral mastectomy. It’s been almost a year since I first met with my surgeons for the initial consultations. How that’s possible? I’m just not really sure.

But in many ways, that “chapter” of my life already seems so long ago. And it’s not just me. I ran into a friend at work today and when he asked how I was doing and I mentioned this milestone, he said “really? That’s it?” It was so life-engulfing for so many months, and now, it’s done. Sure there’s follow ups and possible touch ups, but the big big part? Done. And what a relief that is.

I feel like I should have something more profound to say, but I really don’t. I’m almost back to my pre surgery self. Or as much as I can be, or want to be, after going through such a life-impacting experience. I’m being ridiculously overly cautious, but with good reason, and when I hit the 3 month post exchange mark here in a few weeks I’ll feel comfortable slowly building back up my strength and endurance. That’s definitely my biggest weakness right now. It’s been tough being so sedentary but I just don’t feel comfortable potentially jeopardizing anything! But that will be the final “check box” to being “back.” Oh and I’m also getting fitted for bras as I come up on the 3 month post op mark – that’s promises to be an experience! Because even these top of the line fabulous foobs are still that… Foobs!

In non-boob BRCA related news, I see my gyn-onc next month accompanied by a CA-125 and ultrasound. Also see my plastic surgeon for that matter. Three trips to the hospital in a week and a half, but not terrible at all given the wonderful break I’ve had lately! I’ll be sure to update after those.

Well that’s pretty much all I can think of to talk about – I’ll take that as a good sign! Doing well in all aspects, and feeling so truly, incredibly blessed to be at this point!