Thursday, December 31, 2015

Thank You 2015, For Saving My Life


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  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.

Wednesday, December 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.

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.

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 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.

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.

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.

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.

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.

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 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! 

Tuesday, December 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.

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 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.

Monday, December 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 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.