So I got a call this evening from my GYN-Onc’s nurse (who is equally as awesome as my doc for what it’s worth) about my test results that I talked about in my last post.

I had kind of figured the abnormalities were no big deal since I hadn’t heard from them in a few weeks and they know I’m a nurse and unlikely to freak out. Well, come to find out, I guess they are a little concerned. I was relieved to hear that they actually got to the same conclusion as me – that my shunt is causing peritoneal irritation which is in turn causing the lab elevation. But, in order to prove that it is, in fact, my baseline, I’m having another CA-125 drawn next week, six weeks after the original (yeah let’s talk about that… Six weeks?! When did that happen?! Seems like that was just yesterday… But at the same time forever ago!)

I’m not worried but glad she’s being cautionary. So one more trip to the medical center… I knew none till July was too good to be true! But it will be nice to confirm everything is okay.

I’ve been absent on blogging I know… Lets see I had lunch with Amy last weekend which was great as always. Her surgery went beautifully which is so encouraging to see. Also, I was so excited to learn that the teardrop-shaped “gummy bear” implants I want as my permanent ones were finally approved in the size I’ll need! I had moments of dread that I would be perpetually waiting for them. They’re the ones my plastic surgeon undoubtedly prefers (the shape is SO much more natural) but they were only approved in smaller sizes when I saw him. I realize that the exchange surgery is wayyy down the line, but it’s exciting nonetheless!

Life has been crazy busy… Lots of trips keeping things flying by! Got a couple more than a bit of a lull before they pick up again and then hey! It will be July
which I’m sure will fly by. Can’t believe the surgery countdown is already down to 130-something days!

Anyhow, I’ll update hopefully with the “all clear” after next week, but that’s the latest!

Time is such a crazy thing.  I seriously feel like I JUST updated this thing and bam! a week has gone by.  And at the same time, it seems like the MRI was absolutely forever ago.  Lately I find myself doing this trippy thing where I figure out how many weeks till my surgery (20 from today to be exact), then count backwards and see what I was doing that amount of weeks ago just to have an estimate of the time left… it’s bizarre.  And now that it’s at the point that my surgery is in a less amount of time than how long I’ve been in this new job… well that just messes with my head.  How it’s been almost 6 months is absolutely unreal.  So yeah.. 20 weeks ago was around the end of October.  Sounds like a long time ago, then I look at my calendar and that was the week of one of my most favorite people on the planet’s wedding.  And really didn’t that just happen?  No way! I keep being told “August will be here before you know it!” and what can I say? There’s some serious truth to that.  Sometimes I wonder if I’m crazy to be waiting till then, but no… it’s perfect timing.

Kudos if you made it through that word vomit… suffice to say, time is a funny thing, and I find myself thinking about it all the time (ha!) lately.  Just weird.

Okay moving on… topic du jour is ovaries.  And honestly this part is really for me when I look back and want/need to remember, but anyhow…

I found out the same day as my tests last week that my MRI was normal (woot! Still can’t celebrate that one enough – “no evidence of malignancy on MRI” was the official awesome verbiage!) but it was a couple days later I got the results of my ultrasound. So to backtrack just a bit, when I met with my gyn-onc we had an in-depth discussion about how screening for ovarian cancer basically sucks (in terms of finding it early) but at the same time we can’t just sit around and do nothing.  So we came up with the plan to do the two tests that are the best the medical world has to offer right now (transvaginal ultrasounds and CA-125s) and do them either every 6 months or a year, depending how things look and monitoring for changes more than anything else.  This I totally am okay with and I respect that she acknowledged the gap in efficacy and that research is being done to improve screening.  Also important to note is her explanation of how different BRCA1 and BRCA2 are in regards to ovarian cancer.  They get lumped together all the time, but BRCA1 carriers have a higher risk of ovarian cancer, and it’s usually earlier in life than BRCA2.  That coupled with my being on OCPs for more than 5 years continuously means my risk is even lower.  All good things.  So all that said, the day of the consult I had a CA-125 drawn (just a simple blood test). The low-down on the CA-125 is that basically, it’s not awesomely accurate and here’s why:

“A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in your blood.

Many different conditions can cause an increase in CA 125. These include uterine fibroids, endometriosis, pelvic inflammatory disease and cirrhosis, as well as pregnancy and normal menstruation. Certain cancers, including ovarian, endometrial, peritoneal and fallopian tube, also can cause CA 125 to be released into the bloodstream.

A CA 125 test isn’t accurate enough to use for cancer screening in all women — especially premenopausal women — because many benign conditions can increase the CA 125 level. What’s more, CA 125 levels are normal in many women with early-stage ovarian cancer.” (Mayo Clinic)

So normal is anything less than 35 and mine came back at 42.  Clearly not anything to be concerned about (the nurse in me says that’s like freaking out over a potassium of 3.4… not gonna happen!), however, it did of course catch my eye.  The only reason we drew one in the first place was to have a baseline, and now we have it.  However, it was interesting when I got my ultrasound report back and it read “1. Normal sonographic appearance of the uterus and ovaries.  2. Small amount of free fluid in the cul-de sac, a greater amount than is considered physiologic… likely related to the ventriculoperitoneal shunt, compatible with findings on prior imaging studies.”  YAY for the word “normal” but here we go with that darn shunt again!  Seriously I would have never imagined the thing could cause so many issues… I had it put in summer of 2006 and other than a couple minor issues when I first had it placed I have barely even thought about it being there since I don’t feel it!

I know I briefly described the shunt concept at some point but just as a visual… you can see where the fluid drains and ends up in the peritoneum (and also why there will be a neurosurgeon on call for boob surgery day…)

So to get to my point, doctor/nurse friends and I have this theory that the free fluid (which is obviously the CSF my shunt is draining) is causing the slight raise in CA-125 (peritoneal irritation, etc).  That’s the issue with the blood test in the first place – false positives abound, and often it’s not elevated when you think it should be!  Will be interesting to inquire if our theory has some validity come July, but it certainly does seem to make sense.

Anyhow, that’s the update to finish the last update.  So now everything really is good to go until July!  And for that I am grateful – work and life have been crazy!  Good crazy, but crazy nonetheless!  Though if you know me you know I love being busy… I joked at the FORCE meeting Saturday (more on that later) that I have such peace with everything that the surgery is simply another date in the calendar… a “surgication” if you will!  Tongue in cheek of course, but it bodes well for the planner in me.

So to finish with a bang… the most important part of this post is to wish my fabulous friend Amy good luck tomorrow with her surgery!!  I’m sure her tatas are going to look amazing, and I’m so excited for her to reach this part of her journey.  All good thoughts headed her way!!

I’m drained, but… MRI and Ultrasound complete!!

It wasn’t even the actual tests that was draining – they really weren’t that bad, but my goodness the drama!  So my VP shunt was the issue before my breast MRI today… some shunts are metal but mine is not one of them.  I’ve known this since the day it was put in when they didn’t give me a “medical device” card because they said it wouldn’t affect anything, which is entirely true.  However, that’s not good enough for an MRI apparently.  And thus began the HOUR of attempting to get written documentation that I could have a freaking MRI without screwing up my shunt.  This was so frustrating because, while I haven’t had one myself since I had my shunt put in, I’ve gone to MRI at work countless times!  And they had CT scans where you could clearly see it’s not metal!  Thankfully the MRI tech was awesome and finally got in contact with my neurosurgeon’s office… since it was so long ago the records were difficult to get.  I was actually changed back into my regular clothes ready to go find medical records and reschedule when she finally got the approval… what a relief! I was so ready to have this behind me and waiting another MONTH was not what I was after.  Of course the actual MRI was painless and took maybe 15 minutes!  Basically you just lay with your boobs dangling and let the loud noises do their thing!

Then we headed over to another building for the ovarian ultrasound… really it was the best experience I could have asked for.  The tech was fantastic, it was quick, and while uncomfortable not at all like I remembered from years ago!  And with that it was headed back home… and hopefully not back to the medical center until JULY!  That’s awesomeness right there.

As I was writing this post I got a call from my breast surgeon’s office (what can I say? dudes are on it!!) and my MRI is 100% clean, no signs of malignancy! YAY!  Best news I could have asked for.  Not gonna lie when I saw the breast surgeon’s phone number pop up I had a moment of panic… not used to people being THAT on top of it… like results less than four hours later!  But yes, all GREAT news.  So I went ahead and scheduled my pre-op appointment with him so I’m all set from a surgery standpoint.  Oh and some people asked why I’m waiting till August and it’s purely a personal preference… the work I do is on an interesting yearly schedule, and it’s kind of (okay, really) crazy up through July, then slows down in August until mid-September when it starts again.  That leaves me a perfect amount of time to have the surgery and recover without any worries of missing anything.  So yeah… that’s the plan!

With that news I’m off to dinner with one of my favorite people… while celebrate might not be the exact right word, cheers to relief are in order!!

Thanks for checking in – have a wonderful rest of the week!

WHEW, what a long day today was – Left at 9:30 am and got back home at 5:30 pm! But wow what an incredibly informative day! After I blogged on Monday, the plastic surgeon’s office called and actually had an opening this morning, which was perfect since I was already going down there to see the GYN-oncologist. Two for one special, much?

So starting off the morning with the plastic surgeon… I certainly respect the “best plastic surgeon I’ve ever worked with” comment from my breast surgeon – this guy is simply amazing (and says the same thing about my breast surgeon!). Incredible bedside manner, has done over 1000 breast reconstruction surgeries, and is truly an artist in every sense of the word. Whereas I would say I was 99.9% okay with everything after Monday’s appointment, I can confidently say I am now 100% confident going into this surgery. He took so much time to explain the entire surgery, recovery, and reconstruction – it was amazing. Also made my day when he said I didn’t have enough abdominal fat to do a flap surgery even if I wanted (ha! – if that’s not the way to a girl’s heart…) So as discussed on Monday, come August we’re looking at a 5-6 hour initial surgery with lovely (sarcasm) drains post op, then expanders/fills for 12 weeks, and finally the exchange surgery for permanent “gummy bear” implants (silicone that doesn’t leak and feels ridiculously “real”) – I thought it was cool that he actually weighs the breast tissue removed to get a baseline, then adds to it to determine implant size. He agrees with going a little bigger to fit my frame, and I really respected his argument of expanders versus immediate reconstruction in that he wants me to be involved in the decision-making on size, contour, etc. I was told on more than once occasion today that he’s a perfectionist, and let’s just say I am MORE than okay with this! He took a whole bunch of measurements, and I also had pictures taken – let’s just say I mastered the “super woman” pose! 🙂

So all in all, the plastic surgeon appointment went better than I could have ever anticipated – I know women that have had to “shop” for surgeons, and I feel so lucky that everything fell into place to end up with a literal dream team – these guys are so humble yet incredible and I honestly don’t feel like I could be in better hands. That feeling, let me tell you, is indescribable knowing the gravity of the situation. So with all our questions/concerns addressed, Mom and I headed to Breadwinners for lunch – yum! And then headed back for round 2!

So I had mixed feelings going into the GYN-onc appointment – I’ve fully come to terms with my mastectomy, but am in absolutely no position to consider an oopherectomy (removal of the ovaries) knowing I want to have kids, and wasn’t quite sure what direction this doctor would be going. Turns out, she completes the “trifecta of badassery” as I have dubbed my three docs! This doctor is down to earth, honest, up on the evidence, and completely personable – she spent over an hour and a half discussing everything, which was incredible. She didn’t shy away from the fact that the science is not awesome on detecting ovarian cancer… in fact it kind of sucks. However, she was very adamant that while risk-reducing surgery is inevitably in my future, she would not touch my ovaries until I was late 30s/early 40s – for this, I love her. And honestly, while the whole kid thing is MY focus, hers is her experiences with young women and surgical menopause. She explained the many options I have, and we came up with a plan that I feel great with – we will start surveillance now and play it by ear whether it will be every 6 months or every 12 months, and simply keep a close eye on everything. She was thrilled that I’ve already reduced my risk of ovarian cancer by 50% (!) by being on OCPs for 5 years continuously, and now we will add in more extensive exams (so much fun let me tell you… NOT!), transvaginal ultrasounds, and CA-125s (a simple blood test). I had the exam and CA-125 today, and will have my first screening ultrasound the same day as my MRI (again with the two for one special fun!)

That makes March 5th the next big day with these tests… and hopefully the last until July if everything comes back clean. July’s gonna be a fun month… seeing everyone (breast surgeon, plastic surgeon, gyn-ONC, neurosurgeon, and neuro-ophthalmologist) before the big day in August. I’ll be out of town the beginning of August so it’s full throttle before then… but I know I’ll be thankful for the distraction, and then I get back and 2 days later it’s surgery day!

I can’t reiterate enough that I have such a feeling of peace with all of this, and also that I’m mentally doing great, and my family too. I know I’ve said it before, but I can’t finish this without saying “thank you” to you all – I walked through the ICU yesterday and was literally showered in hugs. Having you all on my side gives me more strength than you will ever know. I know I have a lot of processing ahead of me in the next few months, but I really feel like I’m in a good place with my incredible family and friends helping me along the way. Dinner tonight with my best friend for the last decade that life kept us apart for a month was exactly what I needed – she didn’t know about the blog so I started from the beginning of this week (it’s been a big week!) and realized JUST how okay I am with all of this. I also had the chance to talk with an amazing person last night – she is one of FIVE sisters that are all BRCA1 positive and have had bilateral mastectomies… what a powerful story! She commented on how some days she totally forgets she even had the surgery… THAT is my goal for this time next year!

Anyhow, yeah… been a big week! But a good one. I’m relieved, empowered, and ready for all that’s to come… and I couldn’t ask for anything more. Will update again soon!

WOW what can I possibly say?? Perhaps I was a little more nervous about this appointment than I let on because OH MY the feeling of sweet, sweet relief!

So I get to the appointment this morning and based purely on my blood pressure the tech is like “are you a little nervous?” Uh, yeah, maybe just a bit. But no sweat. I was ready! And I’m glad I was… because my (awesome) doctor was 110% behind everything! We started out with me reminding him of how he told me to call when I was 25 and he says “and you actually did?! No one does that!” Ha! This IS [control freak] me we’re talking about! He had a nice little med student with him which I have a soft spot for after nursing school (so awkward being the student!); they did an exam of which I’m relieved to say he felt nothing other than glandular (dense) tissue (which I knew about) and rib. Woot!

At that point I can tell he’s about to launch into the “options” speech so I rather nicely interject with “before you get on that… I’m not interested in surveillance… prophylactic mastectomy it is.” He was only slightly surprised at my go-get-it-ness, but I quickly explained how I already have to do 6 month checkups for my VP shunt with my neuro-ophthalmologist and yearly head CT scans (long story for those that don’t know… basically when I was 17 I woke up one day and couldn’t see… have this weird condition called psuedotumor cerebri where my intracranial pressure is high and therefore I had a shunt put in that drains the excess fluid… all is well and good since then but it is a permanent thing) and that that’s plenty. And that I’m basically a shit magnet (yep, really said that) to which he couldn’t help but concur. He jumped right in with telling me it was the right decision, so before my moral support (mom and friend) came in, he showed me where the incisions will be (will be barely noticeable underneath the breasts) and briefly explained that it would be as nipple-sparing and skin-sparing as possible, unless he runs into cancer, which at that point they would take the nipple on that side.

So with moral support in the room, he then took plenty of time to explain everything… and didn’t even laugh TOO hard when I asked if it was too crazy or if we could pick a date… TODAY. So barring any schedule changes, ladies and gentlemen we have a date: August 6! He even went so far as to tell me how proud he was of my decision, as he was actually dreading having to follow me, knowing my risk factors were so high. The biggest one being my cumulative radiation exposure… between my shunt and my 2+ years in high school/college where I was sick with pancreatitis (another long story… doesn’t need explanation if you don’t already know… just trust that it was a crappy couple of years), it all adds up… and it’s a lot. And as the sole problem with BRCA gene mutations is the body’s inability to process radiation, he confirmed I was just asking for trouble. I did ask about his preference for immediate reconstruction versus expanders and he bluntly said there is no option… expanders are absolutely the way to go. That he gets every last bit of breast tissue (down to the dermis) and that the flaps need time to heal and stretch, and that he wants no unnecessary stress on anything. I’ll be in the hospital for 2 nights (“one for each side” – no joke, that’s really how he said it… similar sense of humor, much?) and he said I’ll be bored out of my mind and ready to go back to work after about 2 weeks! That’s SO not horrible!

So after the initial surgery there will be a 12 week period where I will have rocks for boobs (no joke – the expanders are the most unnatural thing ever) and will go to the plastic surgeon weekly to have saline injected into the expanders. This will slowly stretch the skin and muscle (the implants go under the muscle), and when we get them to the size I want (probably just a little bigger than I am now for what it’s worth), there will be an exchange surgery. This is a super quick operation where they basically just swap out the expanders for the permanent ones… so we’re looking probably mid-November-ish for that. Yes it’s a process, but I wholeheartedly trust that this is the way to go.

So the steps from here: he was glad to hear I’m already set up with the gyn-onc (Thursday). I’m having a breast MRI on March 5th to make sure that everything is good to go and that there’s nothing there now (fingers crossed!) They actually had an opening today but there’s some funky period math (hormones and such) to make sure they don’t find any false positives and the math failed me, so March 5th it is. Probably for the better… that may have been a bit much in one day! They put in the referral for the plastic surgeon (“the best plastic surgeon I’ve ever worked with!” – huge relief there) so that will be the next big appointment. Other than that if all goes well, I won’t see my breast surgeon until late July for pre-op (!) That seems crazy!! But then I think how February is almost over and OMG how did that happen?! Looking at my calendar for the next 5 (!) months I know it will be here before I know it.

It’s hard to believe this is all falling into place so well… what did I say about wanting to be a girl with a plan?! This was the weirdest thing though… I went to schedule the MRI and by the time I made it to the surgery scheduler, she had already talked to the plastic surgery scheduler and she says “How about August 6?” No joke I literally had “Surgery??” in my calendar for that day. CRAZY!! The only other thing that will make scheduling for the actual day fun is that there has to be a neurosurgeon on call in case they run into problems with my shunt… it goes from the top of my head (through the ventricle) and ends in my abdomen… it’s the whole not knowing exactly where it goes to get there that could potentially cause issues. My surgeon has actually done a number of mastectomies on shunt patients which is huge to me, as it could understandably cause a hiccup… and he even saw one that actually went through breast tissue. There hopefully won’t be any issues but I’m relieved to know he’s cautious!

I refused to leave before getting a chance to see my beloved genetic counselor. While she wasn’t the one that helped with my initial diagnosis, she has been amazing every since and heads up the local FORCE group I go to. She’s a huge support and was so excited to hear everything.

I seriously cannot even put into words just how relieved I am right now. To have a world-renowned expert reiterate that I am making the right decision? Wow. Talk about powerful. Once these other few appointments are taken care of, it should be smooth sailing till August… 168 days, but who’s counting?!