Surgically Induced Menopause...The Truth

Let's be real for a moment.  Honest.  Brutally honest.  Let's talk about menopause.  Not just menopause, but surgically induced menopause.  It's no joke.  I don't write this to scare anyone, I write it to tell you MY journey and things I'VE learned.  May you be blessed enough to have none of these symptoms or only one or two.

Two and a half years ago, I had my bilateral salpingo oophorectomy...that's fancy talk for taking out my ovaries and tubes.  I did it only six months after having my bilateral prophylactic mastectomy with reconstruction.  I figured I'd just get it all done and put it all behind me.  My only goals were 1) to decrease my chances of developing breast or ovarian cancer and 2) doing it before I turned 40, as that's when my mom was diagnosed.

I've talked in previous posts about how well my mastectomy went, how I felt I was better prepared for it, and how calm I was...eerily calm, about the whole thing.  I wasn't attached to my breasts in any way, and really, my surgeon did such an amazing job that I don't miss a single thing about my old breasts.  Now, I will say, I had already had my children and got to breast feed.  So perhaps I'd feel differently if that wasn't the case.  But taking all that into account, I'm extremely happy with the results.

But then there's the oophorectomy.  It scared the crap out of me.  In one of my initial consults, I learned all about the risks of the surgery and all the side effects of losing my ovaries.  To hear words like memory loss, heart disease, bone density, psychological well-being and sexual disfunction...I'm amazed I went through with it.  But we need to keep one thing in mind...we're trying to avoid getting cancer, right?  So the only choice I had was to go through with it.  Now, let's fast forward to today, 2018, two and a half years later.

Ladies, I'm not going to lie.  It pretty much sucks.  Is it doable?  Of course.  Are there drawbacks, absolutely.  Some days my glass is half full and sometimes it's half empty.  But here we are, it is what it is, so I'm just going to let you know how it's all panning out.

Hair

My once thick beautiful hair is now thinning.  I take biotin, collagen, buy shampoos with lavender...anything people suggest, I try.  But alas, it's thinning and I hate it.  The positive side?  I don't have to shave as often anymore because hair, anywhere, barely grows anymore, and the ones that do are soft.  That's a plus, right?  Some say to get your testosterone tested as it can cause male pattern baldness type issues.  My testosterone is AOK, so what's next?

Skin

Awww, say goodbye to  beautiful, supple skin.  The elasticity just isn't the same anymore.  I now look down and see my mom.  Not that mom looked bad!  But come on, when I was little, I thought my mom was old, when really she was only 39...lol.  In addition to the supplements above, I use wonderful lotions...but really, it's just my reality now.  It's a bit more wrinkly and a bit more loose.

HRT

So, I tried to avoid HRT, but the reality is, I couldn't.  My hot flashes were non-stop...8-10 massive whammies during the day alone, ones that caused me to mop myself down with tissues.   So, I started taking progesterone and estrogen.  Ahhhh, the joys of estrogen gel.  Every night, I get my measuring stick, squeeze out my gel, and rub it onto my arm.  I then wait for it to dry while trying to avoid getting it on anything.  It's so sexy.  The hot flashes went down to about 4-6 a day and were more manageable.

Sleep

Once I had my oophorectomy, it's like I woke up to life, and can't go back to sleep.  Sadly, I've tried all the herbal remedies, compounds and HRT, but nothing can get me to sleep...and stay asleep.  So, I take half an over the counter sleeping pill a night which keeps me in a beautiful slumber.  Some doctors recommend taking some anti-depressants for hot flashes which also helps with insomnia, but I'm not sure I'm ready for that.

Weight Gain

Oh, the weight.  It kept coming and coming and coming.  I was at my wit's end!  I hadn't changed my eating habits, I went on HRT to be more hormonally balanced, and yet it was as if my body said, "hey, it is what it is...accept it!."  Ummmm, no.  Wasn't going to.  So, my doctor put me on the keto way of eating and guess what...all the weight melted off.  I haven't stopped, going on over a year now.  It also dramatically reduced my hot flashes to about 2-3 a day and barely noticeable!  I'm guessing the lack of any and all sugar did that, but I'll let a medial genius disprove me.

Memory

I scoffed at the idea that a simple surgery, ok, not simple, but you know what I mean, could change my memory capability.  But wow.  I notice a huge difference as the years go on.  I'm not as mentally sharp.  Sometimes it takes me a bit longer to realize what I'm trying to do in the moment, what I came into the room to do, think of something I was supposed to tell someone...just these blips here and there that are happening more often.  Sometimes I just laugh at myself and say, oops, another oopho brain moment.

Sex

Ok, SOOOOOO personal, but so real.  So, here it goes.  You'll be dry.  That changes everything.  It instills fears.  Fear of pain, fear of lack of pleasure, fear of everything being different.  You can try estrogen insertion pills to help, different gels, whatever will work for you...BUT KEEP AT IT.  Keep trying to find a solution and don't let the fear take over.

Babies

So, I knew I was done having children.  I really did.  Really.  Well, I tell myself that anyway.  But oh my goodness, now that I'm 2.5 years out, something strange is happening to me.  I have baby fever.  I see them and I want them.  I imagine having one.  And then, it sets in.  I can never have a baby that is genetically mine.  And it makes me sad.  Should I have harvested eggs?  Too late now.  I wasn't even thinking about it because I was done having kids.  Honestly, I was done.  I think.

That's it.  That's the joys of having surgically induced menopause.  The gift bestowed upon you for completing a life saving surgery.  Am I thankful for having the opportunity I had to chance my life's course?  Absolutely.  But am I human, experiencing grief, anger and change?  Absolutely.

One Year and Seven Months Post Oophorectomy

Things Are Better Than They Were

I'll admit, in my last update post, I was way in over my head.  I was going through the first nine months of hormonal changes brought on by immediate menopause after having my risk-reducing bilateral salpingo-oophorectomy as a follow up to my mastectomy, all due to carrying the BRCA gene.  My head was twirling with information and hot flashes.  Nine months out from surgery, my hot flashes were coming on like wildfire and I was sinking into depression.  There I was, feeling great after my mastectomy journey, so I dove head first into the oophorectomy, thinking I could handle that just as gracefully.  Honestly, the mastectomy was easier for me.  There was surgery, and it was done.  I didn't have to have follow ups or think about medications or hormonal changes, etc.  The package was neat and tidy.  But the oophorectomy, I felt like it had changed my life and there was no turning back.

Hormones

As I mentioned in my previous post, I tossed and turned about taking hormones to help me control the menopause symptoms.  I sought out advice from forums, doctors (yes, more than one), nutritionists and friends.  I felt guilty even thinking about taking hormones after all the surgeries I had to prevent cancer.  I felt guilty because of the voices who said, "no, don't do it."  But, in my head, I kept replaying something my husband taught me long ago, "you have to read both books."  So, I listened to both sides of the argument, I weighed things out to help me have the best quality and LOVE of life, and I decided to do it.  Here's what immediately happened according to my last post:

Ongoing Journal Updates

• Three days after starting HRT, I noticed my hot flashes were getting better.  I went from 8-10 a day, to around 5.

• Five days after starting HRT, my legs cramps are gone.  I can stretch to my hearts content without spasms.

• Six days later, I'm an emotional wreck.  I fear this one because I have to be very careful that I'm not slipping into depression.  Everything is making me cry and I'm feeling quite alone.  I know this is the hormones, because for the last 9 months, I've barely shed a tear since the estrogen was removed from my body.  

Well, needless to say, a lot has changed since that first week of hormones.  After playing with some levels, yes, things got better.  The "depression" state I was feeling started going away within the next week and the hot flashes remained at about 5-6 BIG ones a day, which was an overall improvement for the better.  However, come my one year anniversary, December 2016, I still wasn't happy with how I was feeling nor with how many intense hot flashes I was still having.  I was also gaining weight like I'd never had before, besides pregnancy.  I didn't want to increase any of the estrogen or progesterone I was on (the lowest amount in estrogen gel and progesterone pill form) because that scared me.  So, in January 2017, I took things into my own hands.

Ketogenic Eating

*I am NOT a doctor, I can only tell MY story here.

In January, a friend told me about the Ketogenic way of eating.  I was very intrigued as I had read three things, 1) it helped with weight loss, 2) is was sugar-free which usually translates to cancer free, and 3) you're eating clean.  So, in February, I went to my doctor and expressed my frustration with my weight gain, but wanted to remain on the lowest dose of hormones possible.  So, he sent me to a nutritionist.

Ilona was very heartfelt when she recommended the Ketogenic way of eating for me.  She believed in it for patients like me, and felt that it helped so many areas I was struggling with, not just one.  After she thoroughly explained it to me and how it works, I was sold.  We started that day, as a family.  I rid my house of all sugars and carbs, basically leaving the refrigerator as our main source of food.  All the junk was gone.  We were now a high fat, moderate protein and low carb family, kids and all.

Within a week, yes, 7 days, of strict Keto eating, my hot flashes were almost nonexistent.  I was getting through my days and nights without sweating during work and racing for a tissue.  And six months later, its the same...hot flashes don't bother me anymore like they used to.  And I live in Singapore where its hot and humid!  Within the first month, my energy skyrocketed.  I no longer got the afternoon drag, I could stay up later and I just felt clarity.  My moods stabilized...I felt more in control and happy.  I'm also pleased to say that I have lost an incredible 21lbs.  Ketogenic eating has changed my life, my family's life.  

When I went to my GYN follow up appointment last week, she was shocked with my weight loss, but wasn't surprised by the reduction in hot flashes.  She said carbs and sugar play a big part in hot flashes, added to the cyclical ups and downs of sugar rushes.  She was pleased with the results and decided there's no need to increase hormones at this time.

So, as of now, I'm praying that things remain as good as they are.  Hormones are in check.  Hot flashes are in check.  Weight is in check.  Life is in check.

Until next time my friends...

Lots of love,

Heather

9 Months Post Oophorectomy

It's been a while since I've updated on either my breast reconstruction or my oophorectomy, but figured now is as good a time as any.  I'm starting with my oophorectomy update, as it's been the most life changing.  And since I'm sitting here getting reflexology, I'm nice and calm which puts me in a good mindset for this discussion.

Which One is Harder?

Everyone seems to think the breast reconstruction would be the harder of the two to go through.  I'll give you this...surgery wise, yes, it's a complicated and long one.  Immediate healing and recovery, yes, it takes months to feel healed.  Long term effects...for me, no, the reconstruction was over and done.  But I'm still in the thick of oophorectomy healing nine months later.  The oophorectomy wins as being harder...physically and emotionally.  The effects have been far more difficult for me to deal with on a day to day basis than the mastectomy.

I was very upfront in my previous posts about the oophorectomy preparation and the first couple weeks after the operation.  But then I stopped writing.  I was having a very hard time with all of the changes that were happening to me and didn't feel it was the right time to write through those emotions.  But after time has passed, I'm realizing I might never feel like I used to, and it's time to accept it and let others know just in case someone else feels like I did...do.  

I took extended leave to start.  Originally, I requested a couple weeks, but when it was time to go back to work, I couldn't.  I was having anxiety attacks, couldn't handle the hot flashes and my belly button wasn't healing.  I extended my time off by another week, just to try and settle everything and deal with my emotions.  With my mastectomy, I knew I had the 8-10 weeks I needed for healing, and truth be told, I was in Bali in week 6, so recovery was great.  The first thing with the oophorectomy I had to acknowledge were the hot flashes, then I could figure out the other things happening in this new body of mine.

Hot Flashes

I'm going to do my best to explain how they feel, to me.  For someone who has recently been told, in the last year, that I suffer from claustrophobia, the hot flashes actually made me feel trapped in a way, temporarily, and cause great anxiety.  First, I feel nausea.  Like I'm going to be sick.  This is when my brain starts saying, "no, no, no," and I get uneasy.  But after maybe 30-45 seconds, when my heart begins racing, I realize it's a hot flash coming.  The nausea subsides and I start feeling this warmth radiating through my core, up and into my chest/arms/neck, then finally into the head.  My body glistens and this lasts for about 3-5 minutes.  I grab anything near me to fan myself through to the end. I don't feel any cold air around me, even if the AC is cranked and the fan is blowing on me.   And then, it goes away.  This happens 8-10 times during waking hours.  I don't know why I even bother putting makeup on as I wipe it off with each dab of sweat with my Kleenex.  My daughter once went to lie on my in the midst of a hot flash, and as soon as she put her head on me, she exclaimed, "mommy, you're hot!"

Other Side Effects 

Another side effect of the surgery is the weight gain.  I wasn't aware of this one.  But I can't fit into any pants I wore pre-surgery.  Nine months later, eating healthier and quitting alcohol consumption during the week, I still can't get into my pants.  Luckily, we don't have winter here in Singapore, so I can live in my dresses and skirts, but honestly, nothing else has changed, so hormones are definitely to blame.  It sounds petty to be so concerned about this after everything I've gone through, but it weighs in (no pun intended) in the back of my mind every morning I get dressed.

Skin elasticity, tone and increased overall skin pain is another strange side effect I'm dealing with.  I noticed over the first few months after surgery that my skin gradually started losing it's shine and tone.  It was looking more like my grandmother's skin than my own.  And then massages started to hurt, both in the layers under the skin and on the surface.  My skin was sensitive.  Of course I still get massages, but I grimace through certain areas of my body being touched.

Sleep?  I was the queen of sleeping, ask my husband.  I could nap 2 hours then sleep a full 10 hours at night, no problem.  I loved sleep.  I could have married sleep. But almost immediately after surgery, I had lost the ability to fall asleep, let alone stay asleep.  If I was lucky enough to fall asleep, the hot flashes would wake me instantly.  So, I now take half a Unisom nightly just to get me through the night.  Not a great way to live by any means, but a good night's sleep really is important for the body in so many ways.

Leg Cramps have been awful.  I will just bend my toes slightly, and my foot goes into spasm.  In bed, if I stretch too much, immediate cramping surges through my legs.  I jump out of bed at night, walking around the dark room, silently  wincing at the pain I'm going through so as not to wake up my husband.

Lastly, and it has to be discussed if we're going to be honest, is libido.  It went out the window, never to return in the past 9 months since surgery.  And not just libido, your body stops producing any sort of moisture at all.  It sucks, and I'm not going to lie, be embarrassed nor sugarcoat this one.  You must be fully aware that this might happen and you need to prepare your spouse or partner for the possibility. I don't think this is something easily discussed and it can really affect a woman's self-perception, as well as the relationship.

So, it's quite a list of things I now deal with on a daily basis.  All this because I traded the uncertainty of my future for peace of mind that I'd be around for my kids.  I don't regret that at all.  But why grant myself this peace and longevity if it was going to leave me miserable?  That's not right either.  It's about quality of life and I want to enjoy mine. This leads me into the hot and often volatile topic of HRT.

HRT

About a month ago, I finally decided enough is enough.  I was tired of menopause making me feel miserable, and quite frankly, old.  I went to my team of doctors for help, and three out of four said HRT would be totally fine.  They brought up research articles in the offices, they took my blood to check how I was doing since surgeries, they ran ultrasounds, did fat analysis, etc., and concluded...it was ok.  I walked out of one doctor's office with my progesterone pill and estrogen cream and felt good about it.  

However, that bag with the prescriptions has sat there untouched for the past month, haunting me.  I was nervous.  What if it was the wrong decision?  Would everything I've done be reversed all in vain?  I was listening to the devil on my shoulder as well as the many believers of the 'no HRT' camp, telling me not to do it.  But what about the other camp?  You've got to read both books and make an educated decision.

A month later, yesterday, I had yet another appointment and this time, I got clarity.  The most recent article shown to me being from August 2016, approving HRT to people like me...no cancer history but BRCA+.  I just had to dive in and make a decision.  So, tonight I did it.  I took my first pill and my dose of estrogen cream.  It feels weird to make this decision, but I'm also hoping and praying for the best.  I know I'll always have nay-sayers, but who doesn't?  No one can really tell me what's best for me, but me.

Ongoing Journal Updates

• Three days after starting HRT, I noticed my hot flashes were getting better.  I went from 8-10 a day, to around 5.

• Five days after starting HRT, my legs cramps are gone.  I can stretch to my hearts content without spasms.

• Six days later, I'm an emotional wreck.  I fear this one because I have to be very careful that I'm not slipping into depression.  Everything is making me cry and I'm feeling quite alone.  I know this is the hormones, because for the last 9 months, I've barely shed a tear since the estrogen was removed from my body.  

Two Weeks Post Oophorectomy

"Its as if you woke up!"

This is what my husband says about me now, ever since the surgery.

I've got this lack of sleep thing happening still.  It's technically 17 days post-op, but close enough, and I can't sleep.  Really, its awful.  If I weren't to take any supplements or meds, I'd probably stay wide awake till midnight or 1am!  With Unisom or Xanax, I can sleep off and on through the night, waking only 3-4 times to hot flashes.  But because my doctor doesn't think either of those are good options long term, she had two mixtures made for me.  I picked them up two days ago, so I've only had two nights taking them.  You can see the labels below to get an idea of the strength and what's in them.

For the melatonin, I'm taking 10 drops under the tongue for two weeks, I'll then go down to 5 drops for as long as I need.  Melatonin is completely safe, so she feels this is the best option.  However, she did warn me of one thing...vivid dreaming for the first few nights.  Well, lets break down night one and night two thus far.

Night 1:
I took the pills right after dinner, and the melatonin 30 minutes to bed time (I was shooting for a 9:00 bedtime because I'm really so very tired.)  It took me a while to fall asleep, and once I did, I was up again about 20 minutes later.  This persisted ALL NIGHT LONG.  I think I watched the clock go through every hour.  And because I wasn't sleeping, I was feeling every single hot flash.  My arms are getting stronger from tossing the covers off and pulling them on all night.  Needless to say, the next morning I felt like I was hit by a truck, suffering from overall exhaustion.

Night 2:
I took the pills after dinner, and the melatonin 30 minutes to bed time.  I was up off and on from 9-1am.  But come 1am, I was able to sleep pretty soundly, only waking maybe 4 times to hot flashes, till 6am.  The strangest part was how vivid my dreams were.  Wow!  I woke up and told my husband everything.  I feel so-so today as I'm still very tired and not getting my normal amount of sleep.  The lack of sleep is also causing me to be pretty weepy.  Tears right behind my eyeballs at all times.  I'm supposed to give it two more nights for my brain to figure out this melatonin thing and learn how to sleep again, and the dreams should calm down and I should begin sleeping better and better.

Some may wonder why this is such a big deal, this sleep thing.  My doctor is concerned not only for my overall health and sanity, but because this is nothing like pre-surgery, when I was a sleeper.  I'm a natural born sleeper.  Doctors have tested me all my life for anemia because I sleep so much.  Whether as a little kid, in high school, in college or later...I sleep.  I can sleep for 9-10 hours at night, and still take an hour nap during the day.  I love sleep.  I really, really miss sleep.  What's happening now is not me.  However, my husband loves it as he finally has a partner with which to watch movies and late night TV.

Other than the sleep, everything is pretty ok.  My scars have healed beautifully, my stitches have fallen out, my tenderness is getting much better and my overall health is great.  I'm now on constant monitoring though, with more frequent check ups to make sure my heart stays healthy (higher risk for heart problems), my cholesterol sorts itself out and my bones remain as strong as possible.

Day 10 Post Oophorectomy

Rather than the day by day play at this point, I figured it was ok to let a few days go by before filling you in again.  So, here I am, in my normal writing spot (my bed), ready to fill in you in on the last five days since we last chatted.

I ended up having a second follow up appointment yesterday, as there are some things we're still working out since the surgery.  The number one thing is the fact that I was once a HUGE sleeper, naturally.  Now, I don't get tired.  Seriously, at 11pm I'm asking my husband, "ok, what movie should we watch next?"  This is a problem as it has totally altered my daily norm, including my ability to feel rested and well healed.  My doctor feels this is a problem too, for the exact same reasons.  We've decided to work on this side effect from surgery first.  As we speak, a compound pharmacy is concocting a mixture of a higher dose of melatonin mixed with some tryptophan...yes, turkey sleepy juice.  I will start with 10 drops under the tongue each night and then ween to 5.  I can take it for as long as I want, if it works.  No side effects.  I was going to go on Effexor, but after reading all the negative side effects, I decided to start with this and give it a try.  I'll let you know how it goes.

I've been out and about three times, and all three times were full on long days of walking and being out with the family.  I noticed that about two hours in, my abdomen begins to ache and I'm reminded that I actually had things cut and removed from inside my body while all I focus on are the incisions on the outside which seem to minor.  The scars looks GREAT!  Pin pricks really.  They are very tender though, and as clothes rub on them and I bend and stretch, they get agitated and everything aches.  My fear right now is getting bumped or hit in the stomach...I'm a school teacher.

I've had some major hot flash attacks occur, which has lead me into my second obstacle throughout recovery...anxiety.  Somewhere within the past two years, I've had about ten to fifteen incidences of what I call, panic attacks.  These same feeling are also happening during some of my hot flashes.  After a long discussion with my doctor, she has identified me as having claustrophobia.  My first experience was in an MRI machine 1/2 way into my 45 min. scan a couple years ago.  Apparently, according to my doctor, the major hot flashes I have every so often, put my body into the same exact feeling I get when I have a claustrophobic attack, and my mind therefore reacts the same...I want out.  This has been hard to deal with, but for now, I'm trying to deal with this med free.  As of now, my doctor has given me a full month of recovery time off work, I'm in week two.  I think I'll only last a third week off, and I'll want to go back to work from sheer boredom already.

Other things to note at this time:

Sleep:
Still not sleeping without the assistance of Unisom or Xanax.  A compound pharmacy is making me a strong dose of melatonin and tryptophan as we speak.  I'll let you know how this works.

Pain Killers:
No pain killers, not even Panadol, for the past five days.  The pain isn't bad enough, just achy and tender.

Hot Flashes:
Well, as you read above, I am having them, and they do wake me up when I've finally managed to fall asleep.  I have purchased a recommended product called a cool pillow.  I used it last night, and yes, it did make a difference in my head temperature, but my lower body still got hot, obviously.  However, it was nice to have the coolness against my face.  I really need to work on the panic attacks during these flashes.  I'm constantly throwing the covers off and on throughout the night, so I know my sleep is interrupted no matter what.

Crying:
I don't cry regularly by any means, but I can feel that I am very emotional and if the right thing was said, I'd cry right then and there.  

Physical:
Feeling ok.  Able to go out for a day at a time here and there, although the next day I'm totally exhausted.  Bandages were off two days ago, no real pain...just aching.

No HRT?:

Nope, no HRT for now.  We did talk about the possibility of the progesterone cream if my hot flashes don't work themselves out in the next couple weeks.

Bleeding:
Still bleeding, but doctor says its normal.  It's more of a pain in the butt right now.

Day 5 Post Oophorectomy Follow Up Appointment

* Updated to include my nighttime happenings in day 5.

Hooray for day five!  See, with every down, there must be an up.  Yes, yesterday was an awful day.  I fear, on these down days, that I'll get stuck in them and that's how life will be from now on.  But then, I have these awesome good days, my up days, like today.  The up days are what recharge us, keep us going, remind us what the heck we're doing this all for.  

I had my follow up appointment this morning with my amazing doctor, Dr. Dharshini.  I've said it before, and I'll say it again, she is my comedic relief, but in a totally good way.  She is so real with me, to the point (those of you who know me know that I do enjoy the sugar coating every so often), but makes it palatable, relatable and just digestible.  When you're going through major life changing surgeries, let alone, milestones, you need someone like that in your life.  This time, I brought my husband with me, the first time he actually got to sit through an appointment regarding my oophorectomy (hey, he met my mastectomy surgeon online for the first time, just like me, so this isn't all that strange.)  I was excited for him to meet Dr. Dharshini so that he could share in my enjoyment of my appointments and understand my affinity for her.

I explained everything happening over the past four days...the sweating, insomnia, the foggy brain feeling, the low blood sugar feeling, the crying...shall I go on?  Everything to her, was fine.  She attributed most everything to the fact that I just had MAJOR SURGERY, removing my freaking hormones overnight.  (I stress this part for those of you reading this who think this was a minor surgery and a walk in the park.)  She was most concerned about my insomnia, as sleep is a major factor in healing and overall emotional health, and said that this would be her focus for right now.  This pleased me greatly, as my husband pointed out, I LOVE sleep.  I'd hate to break up with it.

By Andr.V.S. (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

After describing all of my concerns and issues I was having, she did the physical exam in the next room.  I do not look at graphic photos, so I already passed on the surgery photos, but I don't look at wounds, sutures or anything else to do with cutting, bleeding, etc.  So, staring at the lovely plain white ceiling, I twiddled my fingers on my chest while she poked and prodded my surgical sites, removing the bandages and re-bandaging at my request.  My belly button actually felt fine during the cleaning and overall check.  It even felt fine when she pressed on it, several times.  It wasn't until about 20 minutes after the exam that I started aching, more than normal, for the first time since surgery.  She obviously touched a trigger point.

Back in her office, we resumed our conversation about the side effects of surgery, the side effects of the lack of estrogen, and what our plan would be for now.  So, here we go (with updates):

Sleep:
I told her I was taking Unisom the past two nights, and she wasn't too thrilled with me relying on something like that for sleep.  I'm now on Melatonin, nightly, to see if it helps.  If this doesn't help, we'll take the next steps, but she's hoping this does the trick.

* Update: last night was AWFUL.  The insomnia was back, but worse, every 20 minutes I was throwing the covers off and drenched in sweat.  At 1am, I was turning to my online lovelies for support, but tears welled.  This happened with the AC on and the fan pointed directly at me.

Pain Killers:
No more pain killers, and really, I'm on Panadol irregularly now.  Despite the pain I felt after today's exam, overall, I really don't NEED anything.

Hot Flashes:
Interestingly, she mentioned that many women who remove their ovaries like me, preventive and losing estrogen all at once, often don't experience hot flashes like women going through natural menopause.  It's usually much easier, less frequent, if at all.  After talking to women online, I know that I've heard from both camps, so not sure on this yet.  However, I can say that I'm overall generally warmer than normal.  I used to be cold all the time...now, I don't even want my pj bottoms on.

* Update: Yes, they do exist...and for me, it was 100% noticeable all night long.  Perhaps I don't notice them during the day as much because I'm busy, but last night, every 20 minutes and they were furious.  

Gas:
Gone!  No more gas, hallelujah!  Now, just a little bloating from the surgery swelling, but no gas.

Crying:
I didn't cry today, but she did mention it will take a while to regulate all these emotions...about a month, to see how I'm really doing.

* Update: Cried tonight!  Go figure!

Physical:
We went out after the appointment again, enjoying a couple hours out of the house.  It pushed me as I had just had my stomach poked and prodded and was walking through the pain, but it was good for me.  No crying, no hot flashes, no blood sugar issues...just, what I would call, extreme fatigue.  I'm now on daily vitamin B complex to help with my energy throughout the day.  I'm also on 5000mg of vitamin D for my bones, as they are very susceptible to deterioration from this point on.

No HRT?:

Nope, no HRT for now.  Here's how she explained it to me.  I've just gone through major surgery to remove my ovaries, which produce estrogen, which to a person who has had breast cancer or has the BRCA1 gene, is not a good fit.  This is controversial, so I'm only stating what is happening for me, at this time, based on my doctor's recommendation.  For her, putting me on any dose of estrogen right now is basically saying, then why did you even have the surgery in the first place?  She went on to say that if I continue having issues physically/mentally, we'll cross that bridge when we come to it, at which point she might be forced to put me on a very low dose of estrogen.  But for now, she doesn't want to.  It was relieving to hear that fat can help produce some amounts of estrogen...so the fat in my belly is actually helping something!

* Update:  We're gonna have ourselves a little sit down, heart to heart about this.  I will not live like last night.

Day 4 Post Oophorectomy

"I can't reverse what I've done."  These are the words that came out of my mouth today as my eyes welled up with tears.  I must remember why I did this.  I must remember what my intentions were for doing something so drastic.  Today was a hard day, a down between my ups day.

After three days of being house bound, and desperately wanting to feel part of the ringing in of the New Year, I decided it would be fun to venture out to a nice lunch in a part of town we have yet to explore for New Year's Day.  The taxi ride just kind of passed me by as I cradled my stomach for fear of each bump jostling my insides.  I could hear my kids chattering away excitedly, but I couldn't tell you what they were talking about.  By the time we arrived and were seated at our table, I felt as if my blood sugar had suddenly dropped.  I was just a bystander at our table, voices muffled, action happening all around me, and there I was, trapped inside a body I didn't know.  It was warm.  I was getting scared.  My husband asked if I was ok and my kids said I'd be really good at a staring contest in that moment.  All I wanted was my glass of orange juice I'd ordered ten minutes earlier.  I could see the man sitting near us checking me out every so often, I think my face looked of unmistakeable pain.  

By Pink Sherbet Photography from USA (FREE Refreshing Orange Slice Creative Commons) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

As I took my first sips of juice, tears streamed down my face.  I was so thankful for that rush of sugar, that coolness of the fresh juice and for the return of the normal voices around me, allowing me to be a part of the scene.  I can't explain what happened today during those moments.  I've been off medication since 7 pm last night (it's now 5:45 pm the next day), so I know its not an effect of the drugs I've been on.  Is it all part of the hormones regulating, learning how to deal without estrogen?  I also needed a sleeping pill in order to sleep last night as I was WIDE AWAKE at midnight, with no intentions of falling asleep anytime soon.  Hormones again?  Was I having withdrawals of the sleep aid?

The rest of lunch was as it should be, filled with laughter, fun conversation and overall excitement for being together.  We took a walk around the surrounding areas, looking at shops, making a list of other eateries we hoped to enjoy in the future and enjoying the fresh air.  I noticed that I was holding my stomach every so often, feeling my insides rumble and my dressings crinkle.  Walking became a bit slower when I finally said enough is enough.  We were back in a taxi, heading to one more destination before home...the mall.  I know, I should have avoided this at all costs, but we needed a collar of shame for our Yorkie who just had a procedure as well.  

Being in the mall must have been what pushed me over the edge.  I was hot and everything around me became muffled again.  I begged my husband to run and grab me a cold, sugary drink.  While I wanted to pour it all over me, I don't think the surrounding people would have appreciated it, so I drank it as normal.  My stomach ached more with each step and I felt as if something was wrong...not rush to the hospital wrong, but not my normal self.  It was time to go home.  We grabbed what we needed and left.  

I was so relieved to open the door to our home, head into my air conditioned bedroom, peel off my clothes and hop in bed.  I was out for the count, waking up two hours later.  I feel fine now.  But I've been resting.  Perhaps my episodes today were hormones, perhaps it was just post surgical anesthesia adjustment, I still don't know.  I can't find other episodes in blogs I look through.  I'm desperate to find out if anyone else has been experiencing these things the week after surgery.  But what I do know is I did not like any of how I felt and wanted so badly to reverse what I had done.  But then, I'd be back at square one...fearing my future.  So, for now, I'll take this as a down day, turn it around from here, and hope for the best tomorrow when I finally meet with my doctor and hopefully get some answers to what has been happening to me.

Sleep:
I can't seem to sleep without a sleeping pill at night.  I either a) can't turn off my brain enough to relax, or b) begin to panic with shallow breathing and feeling all over uncomfortable.

Medicine:
I'm only on Panadol now...no more drugs.  I'm very sensitive to drugs, so I'm wondering if any of this is just side effects I'm experiencing from pain killers.  The Panadol hasn't even been very regular, so the pain is more of an ache...tolerable.

Hot Flashes:
I don't know if what I'm experiencing are hot flashes.  I do know that I'm the one who is always cold, everywhere we go, and I'm no longer that person.  I am getting very warm in different situations, feeling sweaty palms and the heat rising in my face.  If these are hot flashes, then I'm having them.  If it's anxiety, then I'm having that.  If it's none of the above, then I'm just hot.

Gas:
It's WAY better today!  Now, my stomach still is enlarged, forcing me to wear elastic waisted clothing, but the gas feels so much better.  I can tell its leaving, and hopefully just about done.

Crying:
Well, you can pretty much tell from today's entry that my hormones are out of whack, and yes, I can pretty much cry at any moment right now.  I always thought it was estrogen that made women cry, and here I am crying without it.

Anxiety:
Yep, I'm gonna say I have a bit of that going on here...ok, a lot.  Maybe if I took Xanax during the day, a lot of this would go away.  I haven't tried that yet, I'll ask my doctor tomorrow.

Physical:
The belly button surgical site is now bruising and I can see the bruise peeking out of the bandaged area.  I guess this is part of healing.  It's still the most tender area when strained or touched.  The other two areas aren't very noticeable.  I shower just fine, walk, for the most part, fine and get on with my day without actual pain.  Discomfort is the word.

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."

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.