12.31.2015

Thank You 2015, For Saving My Life

2015.

I could say this was the worst year of my life.

I could say I want to put this all behind me and forget about it.

I could say so long 2015, bring on 2016.

I could say "why me?"

But I won't.  Instead, I will say thank you to 2015.

This year has happened for a reason.  This year makes me, me.  This year is an important marker in my life...and important year in my dash.  On March 3, 2015, I blogged for the first time on this site, when I truly began my journey of healing and saving my life.  I had finally made the decision to have a preventive mastectomy with reconstruction in June 2015, ten years after finding out I was BRCA1 positive.  It was Thanksgiving Day, 2014, when I received my first abnormal mammogram, and I was tired of playing it safe through screenings.  I wanted more assurance, I wanted to rid myself of the possibility of cancer.  I wanted to focus on living, not live in fear of dying.

My mastectomy journey was actually a beautiful one.  I was connected to the most wonderful team at PRMA in San Antonio, Texas, including Patient Liaison Courtney, Nurse Denise and the amazing Dr. Chrysopoulo...all friends still today.  This is my dream team who supported me before, during and after surgery.  My friends who are still here today, checking in on me, sharing new studies of information and who are truly invested in me as a patient.  They helped make Wonder Woman possible, because even Wonder Woman needs a dream team.

I did it for her.

Choosing a mastectomy wasn't easy, nor did it come lightly.  I researched a lot, blogged a lot and had a huge support system from friends and my online community.  It was a long road to recovery, it required a lot of strength and positivity (as much as possible) and it was the best decision I ever made.  I had made the choice to save my life and it was the right one for me.  I went from an 85% chance of breast cancer to 1-2%.  My fears of getting breast cancer are gone.  My fears of having my children watch their mother suffer, like I did mine, are gone.  My fears in general...are gone.  And in return, I was fortunate enough to have an amazing microsurgeon take away my mutations and give me my beautiful womanly body back, all while I was sleeping for what seemed a short moment in time.

My recovery and my blogging from my mastectomy turned into a blessing.  My voice reached far, letters and words of support poured in daily, women confused turned to me asking for advice...and three bucket list items happened within the next few months of recovery.  1.  I published a book based on my own experiences with my mom.  2.  I was asked to write an article for Parenting.com.  3.  I went to Bali to complete my final healing...physically and mentally.  I'm often called brave.  I don't see it as brave.  I see it as a choice I made and went through with for a brighter ending.  Wonder Woman...I'll take it.  Not because I have super hero powers, but because I made myself wonder just how much I really am capable of doing and how much power I really do have inside.  Anyone can be a Wonder Woman...or any other inspirational character you choose.  Dig deep within and find what makes you happy, feel strong, feel womanly and most importantly, makes you feel like you.

I did it for her too.

In July of this year, I was back in the doctor's office, just over one month after my mastectomy, preparing for my bilateral salpingo-oophorectomy.  I tend to do things all at once, both feet in and jump.  I went from college to post-graduate school to earning my Master's all in sequential years because I just wanted it all done.  I set my sights on a vacation spot, and before my husband can answer the question "do you want to go there?", I've already priced it out and am asking for the credit card.  I get an idea and I go for it.  I'm a doer, so it really didn't surprise anyone that I decided to have my oophorectomy within the same year as my mastectomy.  Let's face it, I was turning 39 in November of this year.  How cool would my 40th birthday be, in 2016, knowing all of this was behind me?  So, in for the pre-op appointment I went, learning all about my next steps.

While my oophorectomy would be done laparoscopically, requiring a mere two weeks recovery vs. the six to eight for the mastectomy, I was more nervous about this one...even in recovery.  While I would yet again be in great hands with the wonderful Dr. Dharshini, there were so many more side effects from this surgery which could affect me for the rest of my life; Heart disease, lung cancer, calcium deficiency, hot flashes, dementia...just to name a few.  But I had to have faith that once again, I'd be reducing my chances of ovarian cancer, from a whopping 50% to 1-2%.  Those mutated genes would once again, be defeated.

And I did it for them.

Three days ago, four days before 2016, I had my oophorectomy and everything went textbook, so I'm told.  I left the hospital the next day, am able to walk as much as I want, have minimal pain (despite the gas) and am very thankful for the opportunities that exist for women like me.  Yes, there are many other things I'm going through as side effects to the surgery that cause me tears today, but let me focus, while I can, on the blessing the surgery has given me.  I'm alive, I'm here for my husband and children and I will be for a long time.  Now, after two surgeries, I've done all that I can to save my life from BRCA1.  I have defeated it.  I can finally breathe.  I can exhale.  I can live.

So, here I sit, in my living room on New Year's Eve, looking at my three beautiful children, and I find peace in 2015.  I made MANY new friends, I accomplished things I only dreamed of, I found peace with my past and I'm now thankful for my future.  I send strength to all of my lovelies out there who are searching for answers, facing their struggles and looking for comfort or peace.  A warm hug from me to you for 2016.

12.30.2015

Day 3 Post Oophorectomy

Not horrible, but not great.  This is a long one...settle in.

Yes, my dears, there are ups and downs in this journey.  The ups are when you think you're having a good day, you feel good, you're experiencing little to no pain, you can get on with your normal daily routine and you're happy you've taken the steps towards a healthier future...getting rid of the mutated genes you inherited.  It's what I call my Wonder Woman days, and I'm very thankful for them.  This surgery was definitely, hands down, easier than my mastectomy.

The downs are everything else...the moments in between the ups, the moments most of our friends and family don't know about because we keep it inside or we turn to our community of like women going through the same thing because they'll understand.  The downs can make you cry in an instant, can leave you foggy minded and can leave you feeling alone and asking "why?".  These are the days that make me feel weak and question just how strong I am.  I hate these days.  I try to avoid these days, pushing them aside, gathering strength from within to get through them and put on my happy face for my husband and kiddos.

No one can write the perfect recovery book for having a mastectomy with reconstruction or a bilateral salpingo oophorectomy.  We're not the same.  We don't heal the same, feel the same nor even go into the surgeries with the same bodies.  We're all different, and we all need to realize that what we are going through is perfectly fine, for our bodies.  Stop comparing yourself to others and their glorious recoveries if you think you're not having one.  There's no rhyme or reason to it.  It's like labor and birth...some go to plan, some don't.  Some women wear their pre-pregnancy clothes home from the hospital, some wear maternity clothes for months after.  Some have postpartum depression, some don't.  But each journey is unique, and again, there's no perfect book.  I read through blogs, picked and chose experiences that are like mine, felt some relief that someone else out there experienced the same as me and felt somewhat normal again.

But Angelina did it.  Angelina had the "perfect" mastectomy and reconstruction experience and the "perfect" oophorectomy.  She was back to work quickly, looks amazing and photographed beautifully throughout.  Is that what we're holding ourselves up to?  The idea of perfection?  It's actually been said to me, several times, by many people..."Angelina did it, so can you."  What does that even mean?  I rack my brain to figure out how that comparison or those words even begin to help someone like me in my position.  It's fine to say, "hey, you're having the same surgery as Angelina," because people then get it due to all the media coverage.  But to say I can do it because she did?  That's where we begin holding ourselves up to other's standards.  I'll guarantee she cried at some points.  I'll guarantee she felt weak in a moment or two.  I'll guarantee she probably even wished she never had to go through any of this at all.

The first two days of my recovery thus far were pretty good, they were up days.  Despite some pain and discomfort from the actual surgery, I was in otherwise good spirits.  I was feeling like everything was going to "plan" as I perused other blogs and stories of recoveries.  I wasn't taking the full dosage of medications prescribed, which had to be a good thing, I was eating, drinking and walking just fine and I just felt good.  Tired, but good.  I even felt well enough to go outside and do something, but I don't walk very quickly at this point, so I wouldn't get too far.  Then, somewhere during the evening last night, things started changing and I started questioning how well I really was doing, acknowledging the hugeness of the situation.  There's things people don't tell you or you won't find on blogs, unless you know exactly what to ask or which key words to type.  I had an idea of what recovery would be like, but these little surprises are happening, ones I wished I'd known about prior so that I would be as mentally prepared as possible.

Night Sweats:
Last night, for the first time, I woke up several times, sweating.  I was so hot, uncomfortably hot, and I couldn't seem to get regulated.  The sheets came off, the fan was pointed right at me and my hair went up into a ponytail.  My insides were hot...if that makes any sense.  It wasn't the air around me, it was me, but different than having a fever.  I wanted nothing touching me or on me.  I didn't know this happened.  I understand that hot flashes are part of the deal now, but when you've never had one, and you don't know what to expect when you do, its kinda scary and uncomfortable.

Gas:
I've touched on this a few times, but not once was I told about this prior to surgery.  It is horribly painful.  I'm on day 3 now, and its beginning to subside, but the gas hurts more than anything.  There's a bunch of gas pumped into you and it has nowhere to escape anytime soon.  It slowly gets passed or absorbed into your tissue, but the process is long and slow.  Since its trapped, its pushing, causing pressure on your ribs and your shoulders.  The shoulders hurt the absolute worst.  You feel like you want an intense massage but that doesn't do anything as its the gas inside, not your actual muscles.  I have been using Gas-X (must do) and a combination of heating pads and heat strips to at least try and ease the pain.  Its getting better, but have some meds on hand for this.

Spotting/Bleeding:
Ok, I just had my ovaries removed and completed my last period, so why in the heck am I spotting?  Yep, another thing I wasn't told about and didn't know would happen.  In the hospital, I was spot free.  Days 1 and 2 after...spot free.  So why, on day 3, am I spotting?  Where in the heck is it coming from?  This is a little scary if you aren't prepared for it or even know it can happen after the surgery.  But yes, you might spot and its ok.  If its more than that, consult your physician to find out what's going on.  Better yet, ask your physician about the possibilities before your surgery so that you're prepared.

Crying:
So, this morning, all I had to do was wake up from sleep and the tears started flowing.  No one had said anything, I hadn't read anything, heck, I wasn't even having bad dreams!  It was simply the act of waking up that sent me into tears.  I felt a bit foggy in the head and just let it all out.  I think this caught my husband off guard, but man he's good when it comes to jumping right in and just being there.  He knew there were no answers he could give me, it was just me and my body trying to make sense of that hour of waking.  Ladies, you have just lost a part of you, a major part of you.  For some, this will be an emotional journey, one no one else can understand until they go through it.  For younger women like us, we've had to do this out of necessity, and in that, we've given up our ability to reproduce, whether we wanted to or not.

Let me tell you, it hit me very hard having my surgery and recovery in the same wing of the hospital as the maternity ward.  Newborns were crying all around me, babies being wheeled in and out of rooms and pregnant bellies being cradled by anxious mommies.  It hit me.  It was surreal.  This was it for me.  I was ending my chances as they were beginning theirs, not that I had any plans of getting pregnant again.  Anyway, who knows why the tears flowed this morning.  Was it hormones already making changes?  Was it the bad night sleep with night sweats freaking me out?  Was it the fear of what I would experience next in the form of side effects?  The crying only lasted a mere ten minutes, but it was definitely something trying to get out.  Acknowledge your feelings.  Let them happen.  You've been through a lot.

Headaches:
I had a pretty bad headache throughout yesterday.  Not sure if it was due to the medicines, the surgery, my anxiety or just being tired, but it ached a lot.  I finally asked my physician if I could take something for it since I was already taking the pain killers.  She suggested some caffeine.  Here I was, trying to be a very good girl, caffeine free, and its exactly what I needed.  A little caffeine and my headache was gone.  Again, ask your physician if its ok, but I've heard headaches are common during this stage after surgery.

Anxiety:
With my mastectomy, I was prescribed Xanax as a precautionary since dealing with major events like these can cause a lot of anxiety and/or depression.  I was glad I had it.  I experienced moments of fear...fear of pain, fear of recovery, fear of everything...I didn't want to move.  The Xanax allowed me to relax, let my body relax, and just heal.  I noticed yesterday, during a nap I tried taking, that my mind was racing.  I could't settle down, I couldn't just breath my way into dreamland.  I then started psyching myself out, thinking of all the things I had just been through and all the things that could still happen via side-effects of the surgery.  It was time to pull the Xanax out.  I have learned, in talking to some friends in the same position, that Xanax or Zoloft has actually been prescribed to them as part of dealing with menopause symptoms beyond anxiety, such as the hot flashes.  Don't be afraid to ask for a little help to get through this.

Walking:
I'm good to go.  I can stand up for long periods of time, I can walk, albeit slowly, around the house just fine and I can sit on the couch and watch a show with the family.  Again, the pain in centered in the belly button, but only when strained or touched.  Otherwise, I really wouldn't know I had had surgery.  Keep your energy up and allow yourself these walks and being upright.  They will help your recovery and overall spirits.  Vitamin B is a good one to take in the morning to keep your energy up if needed.

Thank you, Facebook, for my word of 2016.  I believe this one.


Sometimes I fear I ask too many questions of my physician, but then I remember, its my first time, not hers.  She's the expert, the one with the answers.  This morning, she sent the most wonderful message to me that helped put me on the right foot for today.  And yes, it made me cry, because yes, I'm now learning to exhale.

"Try to get yourself out of the house and to a park or somewhere open aired with fresh sunlight.  You are so not the cooped up in darkness kinda girl, so being up and about will do you wonders.  Big stuff has happened and passed, the new year will bring so much awesomeness you won't know what to do with it.  You are great, family's great, everybody is healthy and its time to exhale...finally."

2 Days Post Oophorectomy

Today is a good day!

I didn't stay on top of my meds during the night, but that didn't really impact me this morning.  I was able to get out of bed with help from my husband and all was good from there.  My stomach is very tender to the touch, but just sitting is completely fine.

I got my Histology report back...all clear!  My left ovary caused some issues when being removed, but it turns out it was due to having a mild endometriotic cyst...totally benign.  Apparently I have cysts that aren't detected by scans, as the same thing happened with my mastectomy...several benign cysts were found during surgery as well.

As of 2 days post-op, here's where I am:

Pain Meds:
I'm taking two of the four meds at this point.  I don't feel that I need the stronger ones, which is a good sign.  My stomach is very tender, as are the immediate sites.  My belly button is the most tender, as expected, and has some hardening occurring around the top edge.  My bandages are the same ones put on after surgery, and show no signs of bleeding, which is a good sign.

Three laparoscopic sites from the surgery.

Gas and Swelling:
The gas is still causing me shoulder and neck pain, for which I use a heating pad to relieve the pain.  It's 24/7, unfortunately, and the only things that will help are time, walking and Gas-X.  

Lying Down vs. Walking:
It really is true...don't lie your way through recovery!  Get up, stand up and walk.  It feels so much better to be upright than lying down...even if you're propped upright in bed.  The gas works its way out and the stomach feels better.  I even took a shower today without help.

Energy:
My energy goes up and down over the past two days.  I want to sleep, yet I want to keep my body actively healing, prevent blood clots by moving and just feel less "sick".  I can tell when I'm about to overdo it, so luckily I'm listening to myself.  I think wanting to do things and get back to normal is a good sign...now I just need to make sure to listen to my body.

I'm incredibly thankful, once again, to my online community.  It's amazing how many people stay in touch and follow my journey, remembering that surgery day was the 28th.  Thank you! 

12.29.2015

20 Hours Post Oophorectomy

Waking up this morning I felt ok.  I had a nurse scour the hospital to find me some ear plugs in order to get some much needed rest during the night, and it worked.  Ear plugs coupled with my sleeping mask, and I was good to go.  Despite the frequent blood pressure checks, the crying babies surrounding me (women's hospital...ironic really) and the noises from the hallway, I rested well and my abdomen felt good this morning.  I was particularly impressed that I was able to get up and use the toilet on my own as soon as I woke up.   The one thing that didn't feel so great was my neck and shoulder area.  It actually hurt pretty badly, as if I had done an intensive workout after having never previously working out.  Here's where I am, 20 hrs post surgery:

Pain Meds:
I'm on a medicine cocktail of  Piriton, Arcoxia, Panadeine and Tramadol.  As of right now, majority of the pain comes from the gas, but when I sit up, lie down, walk...otherwise engage my stomach muscles, I feel the pain of the surgical sites.  I don't imagine I'll be on these pain killers for long, probably downgrading to just Tylenol soon.

Gas and Swelling:
This is the most painful part of the whole experience thus far.  I woke up to pain in my neck, shoulders and upper abdomen unlike any pain I've had in these areas before.  More than just discomfort from eating too much or feeling bloated.  This is the result of gas being pumped into my abdomen in order for the doctor to see my organs more clearly.  The gas rises and is looking for ways out, besides getting reabsorbed by the body tissue.  Limiting gassy foods is a must until I get this under control.  My husband has just gone out to find me some sort of stool softener and gas relief.  Lets hope these work.

With the gas comes swelling.  I'm very comfortable wearing my well-loved pj bottoms that have that extra "give" in the elastic.  But my stomach feels like a little bowling ball and is quite tender to the touch.  Leaving it alone, I feel nothing until I engage the muscles.  It's when I touch it that I realize how tender the areas are.

The lovely flower bouquet my daughter made.


Lying Down vs. Walking:
Surprisingly, I thought all was good lying in bed and taking it easy, but standing upright and walking feels much better.  It's slow, no power walking here, but it allows everything to sit where its supposed to as well as helps work the gas out.

HRT:
While totally controversial on whether to take it or not, and why, I'm not on any at this point.  My doctor has decided that we will see how I go for now, and treat areas that need treating as they come.  So far, I'm not have menopausal symptoms that I notice.  I'm in Singapore, I'm always hot and sweaty...so I'm not sure yet if I'm having hot flashes or not (but the air conditioning is on!).  As for mood swings, I haven't had that yet either, although my husband may disagree, but seriously, I think I've been ok for now.  We'll see what the next 24 hrs brings as my body settles in.

Meds From Here On:
I'll be on 5000 mg of Vitamin D, baby aspirin and Methyl-Guard Plus for now.  Again, we'll wait and see how things go.

*update...pretty sure I just experienced my first hot flash tonight.  All AC units are on in the house, kids are cold and all of the sudden I got really hot.

12.28.2015

Surgery Day- Oophorectomy


The day finally came, the day I would complete my BRCA surgical road.  Unlike the preparations for my mastectomy and reconstruction, this surgery slowly creeped up on me out of nowhere in a sense.  With so many overseas plans to be made for my mastectomy, I was constantly in the state of preparation.  Phone calls, booking flights, medical tests, booking lodging and wrapping up the school year early.  I blogged almost daily to help me get through it all and I talked about it a lot.  I even wrote a children's book during the process.  It was easy to talk about, it was familiar, it was long awaited.  But with all of that preparation came fears, tears and a lot of emotional support needed.  I was overly prepared, if that's possible.  But for this surgery, it was quite different.

                                                

Planning for the oophorectomy to happen in Singapore required much less interference with daily life, which allowed me (good or bad) to simply live in the moment of each day versus stressing out about it.  In a sense, I was avoiding it. A good friend would check in on my daily at work, asking how I was doing as the date approached.  She knew and could see I was having quiet "bad" days as I kept it all inside.  I don't think my husband and I even talked about it much, heck, he still hasn't met my doctor performing the surgery! I can't explain why it's so different this time...it just is. My appointment was booked a couple months ago, and up until today, I didn't need to do anything more but wait.

I kept myself very busy between Thanksgiving and Christmas and work was demanding with end of term report cards to fill out, holiday parties to partake in and holiday travel to Hong Kong.  There were several times I would momentarily get overwhelmed when I thought about the surgery, but I couldn't put into words what scared me so much nor did I communicate it with anyone but my doctor.  I think she understands I'm a control freak and needed as many answers as I could get. Was it the physical pain? The hormonal and emotional changes I'd go through?  Was it that I'd now need vitamin D daily, along with exercise, just to keep this new me from becoming brittle?  I think it was all of that, plus more.  It was just the unknown.  

                                       

But here it has come, surgery day, and I can't turn back.  We arrived at the hospital around 5:30am, I was admitted and immediately taken to my room where I changed and waited for them to take me to the OR.  Several times I told my husband that it all seemed surreal, that it wasn't really happening.  I was a bit emotionless until the "cold" nurses came in and barked orders at me to get changed for surgery. There's a disconnect between staff and patients over here, and I've noticed it in several areas.  This was hard for me, as I needed the compassion for what I was about to go through.  I missed the US terribly, and I remember voicing that to my husband.  It was all so clinical here.  My doctor was my saving grace.  Her humor upon seeing me was just what I needed.

This was also the first time I'd be wheeled into an OR fully awake, and I can say I didn't like it.  None of it helped ease my anxiety, unlike my experience with my mastectomy.  The nurses running around, the anesthesiologist talking about everything that was going to happen...I just wanted to be knocked out.  I laid there, my body shaking every so often from tension and fear, and just waited to be sent into lala land.  Finally, the oxygen mask came and the last thing I remember was being told a serum was being injected into my arm that would burn.  I felt the burn and I was out.

                                         

I don't remember being in recovery this time as I do with my mastectomy.  I only remember getting to my room and having to switch from the OR bed to my hospital bed.  I cried.  It hurt and I felt weak.  My belly button is what is the most painful right now.  Every move or tightening of the abdomen I have to do to sit up, stand up, sit down or lie down hurts.  But overall, not nearly as bad as my mastectomy.  I could move, that's a major difference.

I started writing this about an hour after I was in my room, and I'm now finishing the next morning simply because I fell asleep from the meds.  I was able to get up on my own for the toilet and can feel a little more pain today, which is probably due to the hospital bed and being confined in movement.  I'll find out today whether or not I can go home.

                                                   


11.11.2015

Pre-Op Oophorectomy Appointment

Today I got to meet with my amazing gynecologist, Dr. Dharshini, as well as my overall medical doctor, Dr. Tucker, who has been the keeper of all my diagnostic information, magical appointment maker with all the best specialists in town and now my nutrition advocate.  These were the two appointments I had been waiting for with anticipation, as I'd find out the results of some important pre-surgery tests I had done last week, as well as learn all about my surgery and recovery in detail.



Dr. Dharshini...Beacon of Light, Master of Comedic Relief and Extremely Patient!


My first appointment today was with my gynecologist, Dr. Dharshini Gopalakrishnakone, who will be performing my bilateral salpingo oophorectomy (say that five times fast!).  Just Google her and you'll find out just how passionate an advocate she is when it comes to women's healthcare as well as being a mom.  I just love my appointments with Dr. Dharshini as she puts me at ease every time, just by being REAL.  She's human, not robotic, and she has a way of making everything palatable and relatable.  I don't leave feeling like I had a bunch of medical jargon shoved down my throat with zero understanding.  And I'll be honest, we laugh...A LOT.  Don't get me wrong, I take this whole process very seriously, but if I don't laugh, I'll break down into a pool of tears, and that's not going to get me anywhere when I need to pay attention the most.  So, I save the tears for the glass of wine later.

The Surgery


We first talked about the surgery and the proposed plan at this point.  I'll first relay what the ideal surgical scenario is, and then I'll relay what happens in that 1-5% chance something else is wrong.

After being sedated and pumped full of air (to open the abdomen for easier viewing and maneuvering), an incision will be made in the navel which will be the site for removing the fallopian tubes and ovaries.  And additional three small incisions will be made, one below the navel and one on each side of the abdomen.  These will all allow for the microscopic surgery to take place.  During this 1.5 hr surgery, basically the fallopian tubes are cut away from the uterus and the ovaries are separated from their blood flow.  This sounds easy, but its quite delicate being that all of this lies dangerously close to the bladder, bowel and appendix.  While the surgery is taking place, a cross-section will be frozen and sent to the lab for immediate results (looking for abnormal cells).  At the same time as the removal of the fallopian tubes and ovaries, a peritoneal washing will be given as well.  Think of it as a large protective sheet spanning your abdomen, holding back and protecting your uterus and ovaries.  This sheet has potential for carrying cancer cells as well, and thus will be "sprayed off", much like the windshield of your car.

Assuming all goes well and textbook, I'll be stitched up, sent to recovery and left to rest with a night or two in the hospital.  While it's major surgery, I won't have the same limitations as I did after my mastectomy.  I will be limited to 5kg lifting for the first month and no intercourse for six weeks, but other than that, I just need to listen to my body and take my recovery at the pace I feel comfortable.  So, here's hoping for just 1-2 nights in the hospital and a quick recovery at home lasting up to two weeks.

IF something doesn't go right, then things get more complicated.  Remember the frozen section sent off to the lab during the surgery?  That will be analyzed, and in 1% of cases, it comes back showing cancerous cells.  If that happens, I will immediately be opened up vertically down the center of my abdomen, and the uterus, appendix (because of close proximity to the ovaries) and the Omentum (fatty apron) will all be removed, and my recovery goes from 1-2 weeks to 6+ weeks.  Remember, we're praying this does NOT happen.

There are a few other complications which could arrive during surgery and would mean opening me up like a cesarean:

1) If the ovaries are somehow fused to parts of my body and the doctor can't access them well
2) Excessive bleeding during the surgery
3) Perforation of the bladder or bowel

And lastly, a few other complications would be infection or trouble with the gas pumped into the cavity.

The Testing, Before and After


What exactly happens now that I'm in surgery induced menopause?  Well, it all seems pretty simple, for the most part.  In order to prepare for the surgery, I had to have a few tests done to see how my body is performing at this stage, pre-menopause and pre-surgery.  A baseline if you will.  Last week I had three tests done, a blood draw, a bone density scan and a pelvic ultrasound.  Today I received the results of all three which lead to a few extra discussions I didn't think I'd be having.  These results were discussed with both Dr. Dharshini and Dr. Tucker.

The blood test-  There were a few scores that came back higher and lower than we'd like when it comes to overall health.  The one immediately affecting this surgery would be my CA 125 marker (ovarian cancer indicator).  This one came back slightly elevated at 36.5 (normal would be < 35).  We are attributing this to the fact that I was mid-cycle during testing, which has been seen to elevate the numbers.  We don't want this number growing as that would indicate a much bigger problem with my ovaries (which we're thankfully removing anyway). Other things I learned: I metabolize foods quickly and have a low glucose level, I need to work on my LDL number (reducing carbs and increasing healthy fats and proteins) and I have low iron (probably due to heavy cycles which will all be history after the surgery and therefore increase my iron).  I'm being sent to a nutritionist this month just to get my eating all sorted out and get my body functioning more optimally.

The Bone Density test- Sadly, my bone density test did not come back like I had hoped.  While my spine is fantastic, my left hip showed that I'm in the osteopaenic range.  This means I'll be starting weight bearing exercises ASAP as well as taking heavy doses of Vitamin D and calcium.  The bone density screen will now occur yearly for me due to the results.  If osteoporosis develops, I'll then be put on Fosamax for a maximum of five years.
Osteopenia is a condition in which bone mineral density is lower than normal. It is considered by many doctors to be a precursor to osteoporosis. However, not every person diagnosed with osteopeniawill develop osteoporosis.- Wiki
Pelvic Ultrasound- Nothing abnormal, all good.

The Other Stuff


I'll begin taking Aspirin after the surgery, for the rest of my life.  This is apparently recommended no matter who you are at about the age of 40 and it reduces risks for heart problems, blood complications, cancers, etc.  We're sticking to non-hormone therapy for now to see how I do after surgery.  If I really need it, we'll do low doses of hormone replacement therapy with a bioidentical hormone cream.  And as for the good 'ole sex drive...IF it decreases due to the surgery and hormone changes, I can use a testosterone.

And there you have it.  Surgery is scheduled for the 28th of December, so keep me in your thoughts and prayers.  This has been an exhausting and emotional day for me and I want nothing more than to sleep the rest of it away, but I'm off to be mom now.

10.11.2015

Four Months Post-Op & October

Four months today, I'm doing great.  I still have pain, I still have this awkward relationship with my breasts because of how they feel, not because of how they look, and I still thank God and my doctor that I had this amazing gift of life given to me.  But on this anniversary, I focus not on my healing process, but on a greater cause...awareness and action.

In an ideal world, I'd like to think that everyone, all over the world, would have access to understanding their genetics and risks without heavy co-pays.  I'd wish that every woman had access to mammograms when needed, treatment if necessary and education at her fingertips.  My hope would be that every human would already know so much about breast cancer awareness, so that all of the money spent on producing pink items could just go directly to helping women and men get the help they need.  My dream would be that all this money we raise year after year would have found a cure by now, and more importantly, that a majority of the money made it into research/grants/and reduced or free access to care.  In an ideal world.

© Nevit Dilmen [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0) via Wikimedia Commons

Every year till now, October approached and I would go into it with a pit in my stomach.  Inevitably, every October, I'd have those who were reminded that I lost my mother at a young age to breast cancer and felt badly, I had those who didn't understand what it was like to be  BRCA1+ for 10 years and not do anything about it and I had those who would just send the "I'm thinking of you" message during the month to let me know they cared.  All perfectly fine in their own ways, but I would get upset inside because I was so conflicted about this month in question.  I had a love/hate relationship with October.  I hated the Facebook secret messages that were hoping to spread awareness because I didn't think it should be secretive, I stayed away from purchasing anything breast cancer pink because it reminded me of pain not happiness, I hated seeing the statistics that so little of funds raised actually made it to where it should go and I wished the month would be over so that I could go on living and sharing my story in my own way, with just as much passion, throughout the whole year, not just in "Pinktober".

I sit here today, four months after my preventive surgery, taking a new turn on life and my own understanding of October.  I've decided it is what you make of it.  Some people love the pink aspect of October, seeking comfort in all of the support and sharing in a larger community beyond themselves.  I'll admit, I love the smiles I see on people's faces in the photos from events, I love my friends who are genuinely fighting for something they are passionate about and I love that the general public pays a little extra attention to an important cause for a month.  I love that voices are heard...or are they?  There are those who still hate October, like I once did, for the commercialism of it all, wondering why we can't just be proactive all year long without the bells and whistles and extra effort during one month of the year.  I have decided that I sit on the wall between both sides now, not really in one court or the other, and here's why.

October Can Be Great...


I lost my mother to breast cancer, and I didn't handle it well.  After her passing, I felt like I had failed as a daughter, as a supporter.  That is when I threw myself into the yearly Susan G. Komen walks and the American Cancer Society's Relays for Life as a way to try and heal.  My friends would join me and I felt like I was doing as much as I could, coming to terms my own way.  I was the one asking for donations each year, putting the sign on my back as a symbol for who I was walking for and feeling like I was making up for time I'd spent in the wrong way.  I'd wear the pink ribbon given to me because I was proud to represent my mother and grandmother in any way that I could.  I'd cry at some point in each event, missing them terribly, and feel comforted that others around me were feeling the same.  But there were always things missing.

While I thought I was doing good for others and trying to love the community spirit that these events brought, I was at the same time ignoring myself.  Never once during those years did I stop and ask about my own health and risks.  Yes, I knew there was something going on in my family that made my future look questionable, but during the ages of 13-25, I never pursued any of the many services offered to someone like me, because I didn't know I had a gene I had to worry about.  Here I was, supporting breast cancer "awareness", but it wasn't hitting home because there wasn't specific information to me, to my situation.  Where was my action?  A month dedicated to helping people gain access, information and support, and I was solely looking at it as a way to deal with my mother's passing.  I then began to think...if there's so much awareness, year after year, then why was my mother passed up for an elective mastectomy and reconstruction when she asked?  Where's the actual education?  October needs to change...we can't isolate Breast Cancer into October.

But So Can the Rest of the Year!


On the flip side, four months ago I had my surgery and I blogged my way through it all.  I never realized how powerful my voice could be.  Here I thought Angelina had taken care of all the hard work, bringing awareness of BRCA to the masses, but I quickly realized...MANY never even heard her story.  Was MY little voice helping to  bring awareness to someone via my blog, my book and now, in the month of October, my article for Parenting.com?  Yes, it was.  I meet people weekly who have never heard of BRCA and I'm shocked.  I realize that not everyone attends an October event, nor follows Hollywood news, especially in different parts of the world.  A woman, just this last week, made a comment about all the pink around and I told her it was for breast cancer awareness month...she had no clue.  For the past year leading up to my surgery, I was the one educating people around me without the pink accessories and fundraisers.  I enjoy telling my story, helping other women understand their genetics, their options and especially how to deal with it all as a mother.  During eleven other months, people still need to be educated.  There will always be someone who just doesn't know, and I'm so happy when they cross my path.

So, here I am, coming to terms with my own understanding of the month of October.  I appreciate those who love it, share in it and find hope through the communities and organizations spreading the word.  I also appreciate those who don't like it for whatever their reasons are.  I now realize that my October doesn't have to be filled with sadness, anger and resentment.  My October is now a time to reflect on my journey and how I decided to change my life's path.  My October is now a time to be there for anyone who needs an ear or a shoulder or some guiding information.  My October will be for advocating about testing, breast reconstruction options and pushing people to listen.  But the rest of the year will also be the same, filled with the same passion as my now October.

9.11.2015

Three Months Post-Op

You're a pain in the...

Boob!

No, I'm not talking about my husband, I'm talking about the actual recovery I'm still going through.  Today marks three months since my surgery.  Here's what's happening at this point, but if you need to refresh what was happening at two months, read here.

Follow Up and Physical Therapy...or Not


Yep, the twinges of pain, sore muscles and tightness are still with me...although MUCH less.  This is due to the fact that I can only do so much on my own with the exercises given to me, but I really need physical therapy to work on the scar tissue and muscles.  Having had the surgery overseas and leaving behind my amazing surgical doctor and nurse, I'm left to pickup the pieces back here in Singapore and its not going as well as I had hoped.  

I came back to Singapore and had an immediate follow up appointment with a doctor here.  A doctor who was amazed that I was up and about and feeling/looking so great a month out.  A doctor who knew nothing about Alloderm, and was so intrigued, that he did an ultrasound just to see inside.  A doctor...who I cannot seem to get an appointment with any time soon.  All I need is a referral.

I've been feeling pretty great since my return to Singapore two months ago.  I've been working, I've been completely off any medications (even Advil) for a month and I'm even able to shave my legs with less pain from repetitive motion of the lateral muscles on the sides of the breasts.  However, I do experience tightness that radiates from the lateral muscles on the side of my left breast into my armpit, which not only causes some twinges of pain, it limits my range of motion.  I need this looked at by a physical therapist.  Sounds simple, right?  I'm at my wit's end trying to get a referral from above mentioned doctor to see a physical therapist.  Surely there has to be an easier way.  As of now, there's a 2-3 week wait to get into the doctor.  Let's hope this happens sooner by some act of goodness, and I can start therapy sooner.

Nipples


Wow, I don't even know what to say here.  They still hurt.  They are quite tender, which I didn't expect this far out from surgery (or is three months not considered "far out" for a surgery like this?).  I'm beginning to wonder if maybe the soreness I feel is from tight muscles and scar tissue pulling at that area?  

Aesthetics


My scars are still rocking on their recovery.  I'm using my InviCible every day and watching them fade more and more.  As for my breasts, they are WAY softer.  I didn't think they could get softer than a month ago, but here we are, another month gone by, and they are even better.  My right breast still looks fantastic, while the left breast is having a little bit of a "tugging" issue due to scar tissue.  Again, physical therapy needed now.  Because of the scar tissue, there's an area under my nipple which is almost pulling inward.  It's slight, not even my husband notices unless I point it out, but I see it.  I say this just so women are aware of things that CAN happen after surgery.  To me...I'm just happy I lessened my chances of getting breast cancer.  I can deal with this slight imperfection.

The strangest thing, and maybe too much information for some, is the way the breast moves when the muscles are tightened.  Imagine pulling/lifting or doing anything that would contract the chest muscles.  Then picture the breast trying to move, like a natural breast, but it doesn't.  The implant stays where it is and the muscle tries to go in the direction forced, so you're left with this indenting, rippling and what not.  Thankfully I'm usually always wearing a bra or shirt so that no one can witness this strange occurrence, but again, I'm here to be truthful.

Emotions


I think I'm beyond the emotional roller coaster that is related to the overall surgery preparation and immediate recovery.  I'm back to all my daily routines and I don't break down in tears at random.  However, if I'm being real and totally transparent here, this is something I posted on August 28th:
Some days I wish my boobs were removable and I could just take a break from them. A break from the soreness, the twinges and itches I can't quite get to and the overall weirdness of them.
It's true, I can't help but feel what I feel.  They are foreign. They are strange.  And they take getting used to.  I do wish, some days, that I didn't have the surgery.  But I'm quickly reminded of my WHY.  I saved my life and really, if faced with it again, I'd do it.  This is just a new me I have to get used to, but I don't doubt that the strangeness of it will every go away.  They'll always be a daily reminder of what I did and why.  And maybe that's ok.  If I never did it, I'd never have this story to tell, I'd never have written a book, and I'd never have met so many wonderful people to add to my life.


Heart-beat
By Nevit Dilmen (talk · contribs) (Own work) [GFDL (http://www.gnu.org/copyleft/fdl.html)
via Wikimedia Commons

8.08.2015

Two Months Post Op and Back to Work

I've just made it to being two months post op.  Another milestone in my journey, which is still unfolding.  Looking back, it seems like so long ago that I was planning for it and waiting for insurance approval.  While doing great, I still have some daily reminders that I'm well in the middle of the healing process.

I hear stories of women jogging at six weeks out after having the same type of surgery, and I'm amazed.  More power to you!  I'm not there.  LOL!  I did, however, go back to work full time.  That is what sent me into examining how I really feel at two months out.  I'm lifting, pushing, walking, and everything in between...I'm an elementary teacher.  I'm testing my body and my body doesn't like it, for now.  I'm coming home, popping pain relievers such as Advil, and finding myself in bed by 8pm.

Pain/Tenderness/Tightness


In order to explain the pain I feel these days, its important to see a diagram of what I had done.


http://www.tavmd.com/2013/09/08/complicated-breast-augmentation-surgery/



AlloDerm 

The AlloDerm is what was used to form a hammock, of sorts, to support the implant.  This is also what will hopefully prevent capsular contracture due to the scar tissue not wanting to bond to it. While AlloDerm is great, you can see the number of stitches needed to hold it in place...all securing it directly to the muscles.  Enter my current pain.

If you look at the high left corner of the AlloDerm in the above image, that's the point at which I have a lot of tenderness and aching right now.  In my right breast, I can actually feel the tiny "bump" at that intersection of AlloDerm and muscle, which may be the stitch and/or scar tissue.  When I press on it, it slightly "pops".  I've been instructed to massage that area as best I can, in order to break up any potential scar tissue which may be building.

Lateral Muscles

In addition to that area, I'm also having overall tenderness and pain in the lateral muscle area on both sides.  This I attribute to several factors.  1)  possible scar tissue forming at drain sites, 2) going back to work and using my muscles more than I have since surgery thus far, and 3) stitches being pulled from the overall activity increase and potential scar tissue.  I am also massaging these areas as much as I can tolerate.  I was allowed to begin side sleeping, at a gentle incline with soft support underneath, but some nights, it's just not comfortable and not worth the aching.

Armpit/Arms

I have tightness in my armpit and leading just into my arm.  While it's not cording, or doesn't seem to be a bad enough case to worry about, it's limiting some of my range of motion.  I am doing my daily stretches and hoping that this is just a time issue.

Nipples

The nipples are still quite tender.  I keep telling myself this is a good thing.  It's sensation.  It's feeling.  It's nerves regenerating.  I was hoping it would have gone away by now, but I'll take it in hopes that I really will retain some feeling after the healing is complete.

Bras

Now is NOT the time to try out the strapless bras as I learned the hard way.  I LOVE my Genie Bra line, ordering four different styles in black, nude and white.  I thought I'd try the strapless one just out of pure excitement.  Well, within hours, I was experiencing a lot of tenderness in my chest muscles above the implants.  I guess it was too much weight to support at this time.

Aesthetics


They look great.  There might be slight imperfections that only I notice from my angle of looking at them, but overall, they are great.  They've settled, they're soft and they look pretty darn natural for being implants.  The positioning couldn't have been better.  It is because of this that I realize what a blessing it was to find a micro surgeon, someone skilled at the teeny tiny details.  The scars in the inframammary fold are looking amazing.  I've been allowed to apply my InviCible scar treatment for the past 3.5 weeks on both the drain sites and the scars.

Medications and Emotions


I have been off all of the major medications for a long time now, as they never really suited me.  However, I found myself popping half a Xanax at work this week, as I felt the heart begin to beat rapidly and the overwhelming sense of nausea took over my body.  The scenario of seeing all of my co-workers again was a bit more emotional than I expected, as the obvious first questions are around the surgery.  Not that I don't like talking about it, it's just that sometimes I feel like my boobs enter the room before I do, if that makes sense.  No one made me feel uncomfortable, it was all my doing, all in my head.  That, coupled with the overall stress of being back to work, just sent me into a tail spin.  That's the only time, in a long time, that I've needed anything more than Advil.



Having said all this, nothing is really limiting me from completing my daily activities.  I'm doing all the normal daily routines I was doing before at both work and home, and perhaps doing too much (like carrying things at work that I shouldn't be), so I think the pain is all just part of the process.  Massaging is just my number one priority right now.  Well, massaging, getting physically and mentally fit again and getting to sleep comfortably on my side are my priorities right now.


7.30.2015

PRMA Testimonial

I've given a lot of information about PRMA and Dr. Chrysopoulo via this blog throughout my journey.  Please read and view my complete testimonials, here in one place.  If you have any questions, please don't hesitate to contact myself or Courtney, the PRMA Patient Liaison.  Long distance travel should not be a factor in preventing you from going to the best.


Testimony 

Read my story about coming to terms with BRCA and deciding on prophylactic mastectomy at PRMA.

 Read this blog post by PRMA patient liaison Courtney Floyd and watch my video testimony.


Contact us via Twitter too! 

Courtney Floyd @diepflapbreast
Dr. Chrysopoulo @mchrysopoulo
Heather @expattravelmom

7.26.2015

Tests, Risks and Confusion Prior to Oophorectomy

Once again I'm in the planning stages for another surgery, the oophorectomy, for this coming December.  I'll be staying local this time, having the surgery here in Singapore.  Little did I know that there would be so many medical tests needed prior to surgery, nor did I fully understand the implications this surgery would have on my body.

Pre-Surgery Baseline Testing


On June 21st, I was happy to receive an email notifying me that all of my tests have been arranged for November, thanks to the help of my local doctor, Dr. Tucker.  These pre-surgery baseline tests will include:

  • blood panels (including the CA-125 ovarian cancer marker)
  • bone mineral density test
  • pelvic ultrasound
  • appt. with Dr. Dharshini to discuss results and formalize the oophorectomy surgery details
  • appt. with Dr. Tucker to discuss results of double mastectomy, results of recent lab work and preparation for the oophorectomy


Bone Density, Osteoarthritis and Cardiac Disease


I think the test I really didn't expect to see was the bone density test.  Apparently, premenopausal women, like myself, who choose to remove their ovaries for cancer risk reduction, are then put at a higher risk for low bone density.  As discussed earlier, this surgery will put me into immediate menopause, meaning I'll begin experiencing side-effects such as hot flashes, night sweats and mood swings (oh how I feel for my lucky ducky husband.)  

A side-effect of the surgery is lower levels of estrogen, which is directly related to bone strength.  Low levels of estrogen=lower bone density.  This isn't great news for someone only 38 years old.  To help combat this loss, I'll be prescribed Fosamax, should I actually need it, but more importantly, weight bearing exercises and calcium.  Another shocker, I'll be at a higher risk for osteoarthritis.  Something to do with estrogen and cartilage.  I feel like having this surgery is going to make me old overnight.  It's scary, the unknown.  

Cardiac disease is another concern as a result of this surgery.  I'll be asked to take a daily low dose aspirin after I have the surgery.

"Conclusions: Bilateral oophorectomy performed before age 45 years is associated with increased cardiovascular mortality, especially with cardiac mortality. However, estrogen treatment may reduce this risk." Credit: http://www.medscape.com/viewarticle/586638

By Ruby Wang (Own work) [CC BY-SA 3.0
(http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

Risks


I research too much some say.  All this reading and research sometimes freaks me out.  I think to myself, what in the hell am I doing?  Here's an example of one such research article I came across that was enough to send me in a panic. 


"In particular, studies have revealed an increased risk of premature death, cardiovascular disease, cognitive impairment or dementia, parkinsonism, osteoporosis and bone fractures, decline in psychological well-being, and decline in sexual function. The effects involve different organs (e.g., heart, bone, or brain), and different functions within organs (e.g., cognitive, motor, or emotional brain functions). Estrogen treatment may prevent some of these negative outcomes, but not all.

Conclusion:
The potential adverse effects of prophylactic bilateral oophorectomy on heart health, neurologic health, bone health, and quality of life should be carefully weighed against its potential benefits for cancer risk reduction in women at average risk of ovarian cancer."                                      Credit: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2585770/ 

Am I making the right decision with this next surgery?  Am I taking it too far?  Are the risks of the oophorectomy more than my actual risk of getting ovarian cancer?  Making the decision to have my mastectomy was a no brainer.  I knew in 2005 I wanted it and I waited anxiously to have it.  Having this oophorectomy is scaring the crap out of me.  I'm not coming to this decision lightly.  I still have cold feet.  Maybe I won't go through with it the more I research, maybe I will.  I'm still five months out...that's plenty of time to swayed one way or the other.


The surgery risks don't end there.  As of now, I have no cancer.  However, there's always that small chance that something changes between now and when I'm in surgery.  There is a small chance that ovarian cancer cells could be found during the surgery, in which case, they would then have to perform a full hysterectomy in addition to the oophorectomy.  I don't want any part of that scenario as there is a much higher risk of complications during the surgery with less than favorable outcomes.


Insurance


I was happy to hear that the office received a verbal 100% guarantee of payment, but we are waiting for it in writing, which should be another five or so days.  Once I have the guarantee, I can move forward knowing this surgery can happen.  Waiting the five and a half weeks for my mastectomy surgery was really difficult on me as I wondered if they'd say not, and then what.  


If you have any words of wisdom, thoughts or advice, I'd love to hear from you.  Please leave a comment below or catch me on Twitter.  I'm looking for something, anything, that will help me make the right decision for myself.