Moving Forward and Letting It Go in Bali- 5 Weeks Post-Op

It's five weeks post-op for me, and I'm sitting here in Bali loving the looks of my future.  I had this trip planned well before my surgery, hoping I'd be recovered enough to come.  I wanted a target, a goal to look forward to after all was said and done.  A moment of...breathing.  No appointments, no agenda, no worries, just...being.  So here I am.  I made it.  I'm sitting in Bali.

There was a time in my life where everything centered around the damn "C" word.  I HAD to have a child before 30 which meant I needed to find that "someone" in my 20s, I HAD to tell that someone early on about my predisposition and possible breast surgery down the road, I HAD to breastfeed a certain length of time for maximum benefits, I HAD to do this and that...I HAD to do everything I could to keep it away from my body.  I hated this time of my life.  I felt pressure from every which way.  I love my good wines, but felt guilt when drinking.  I love to indulge in some of the richest foods around the world, but wondered if I was feeding the beast inside.  I'm not saying that I'm going to splurge now and live care-free because I'll never get it, I'm just glad that I was able to do the most that I could to get to where I am today.  I made it to 38 cancer free.

One of the biggest worries I have had since giving birth to my daughters in 2006 and 2008 was what on Earth have I just given them in terms of life.  I had guilt at times.  Have I wronged them in my choice to continue having children AFTER I found out I was BRCA positive?  It's almost haunting at times.  However, I look at my mom's options back in 1989 and I look at my options here in 2015, and things have surely changed.  There are doctors out there who listen to these worries, who want to help make a difference in not only the quality of your physical life, but your mental life.  No one wants any mother to worry her entire life, about herself nor her children.  I have comfort in knowing that my girls will be given the same opportunity as me, probably even better, when the time is right.  I can't decide for them, but already, at ages seven and nine, they are very well informed.  Even my son.  He knows this affects him too, as he could be a carrier as well.  I've released this guilt, turning it from fear-based thoughts to advocacy and education in hopes of changing their futures.  I will help them instead of sheltering them, I will educate them instead of keeping it taboo and I will hold their hands through it all, just like they held mine.  I'm thankful there's a place called PRMA and a Dr. Chrysopoulo who can someday help them, if not them directly, help educate the future of medical practice where its patient centered.

I'm sitting here and realizing how different my mental state is.  Every day I wake up is a new day, a fresh start.  I don't look in the mirror and think, "when am I going to get cancer."  Instead, I think, "wow, they look pretty damn good!"  I no longer spend a moment during a day thinking, "I'm almost 40.  My mom was diagnosed at 40.  I'm scared."  Instead, I sit here looking at my children thinking, "what adventure will we be on next when I'm 40?"  I've allowed myself to breath new life in, and I think my husband would agree.  Something has been released.  Something has changed, for the better.  

This summer will forever be the 'Summer of 2015' in our family.  Monumental, life-changing and forever remembered.

5 Weeks Post-Op Physically:

For a quick update on how it feels five weeks out, here's a quick glance.
* I'm completely off medication, not even Advil at this point.
* I still have soreness/tenderness on the outer sides of each breast, my sternum area is tender and my nipples are still quite sore.
* Regular non-underwire bras are the norm for me now, although I still prefer my tighter Genie Zip bra at night.
* This week in Bali has given me more to consider about recovery and my new breasts as 1) bathing suit tops are tight, and it hurts a bit getting them on and off, 2) swimming was not easy and 3) running is NOT an option for me yet as I had to grab my chest when trying to bounce off the hot sand (no, I wasn't wearing my flip flops...they were in my hand.  Don't ask.  Already got scolded.)
* I'm proud to look in the mirror as my breasts keep settling into their new shape.
* The scars are looking better and I'll past more photos at six weeks.

One Month Post Op

Yes, I'm going to be like a new mom again, one who posts updates of her babies daily for the first week, then weekly up to "four weeks old", then does the monthly photos and updates until "24 months old" (not 2 years), then yearly.  Why?  Because when I search the internet, these are the things I look for.  How was someone doing each week immediately following surgery?  What is it like and what changes happen as the months go by?  If I want to know, surely someone out there wants to know too.  Think of me as your What to Expect When You're Expecting Healing mama. So here you go, here's what life is like for me one month post op.

Sleeping

I put this one first because its my biggest pet peeve right now.  I mean its 3:30 am and here I am, wide awake and writing.  I WANT TO SLEEP NORMALLY AGAIN.  There, its out there into the universe.  Lets hope the universe responds kindly.  Seriously though, here we are, four weeks out, and I'm still having to sleep on my back.  I'm not a back sleeper, at all.  I find myself tossing and turning all night because I just can't get comfortable.  Even with pillows...they just make me hot.  I've been given permission to slightly lean to the side, propping my breast with a soft pillow so that nothing firm will press on the Alloderm and in turn weaken it, but that's not doing it for me either.  In the beginning I was sleeping just fine due to the medications.  But now, medicine free, I sleep for maybe five hours and then I'm wide awake.  Luckily, there's a whole other side of the world awake on Twitter.

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

Breasts

You would think this would have been number one on my list, but seriously, if you knew how much I loved sleep, you'd understand. At one month post op, everyone pretty much assumes I'm back to normal activity, living life as before and beyond the pain.  Clearing all that up for you now, I'm not.  Am I happy?  Yes!  Am I healing?  Yes!  Am I grateful?  Yes!  But reality is, there's still a lot I'm going through with my new breasts.  Yes, they are pretty flawless, they are damaged breast tissue free and they look darn good in my summer dresses, but we are still having a love-hate relationship.

• Nipples- They feel like the painful nipples of a newly breast feeding mother.  If anything or anyone touches them...  Even my bra gliding against them the wrong way sends hair raising sensations down my spine.  Yes, yes, I'm told by my nurse and surgeon that this is a good thing, as it means sensation is coming back, but WOW!

• Implants- At this stage, they are so much softer than they were the first couple weeks.  I can grab them and gently squeeze them...molding them to my grip.  I say that because I imagined having these stiff mounds on my chest that wouldn't move.  However, there are two scenarios that are strange to feel and I'm still getting used to.  1) putting my arms at my sides.  While my breasts are by no means huge, it feels strange to feel the edges of my breasts when I put my arms at my sides...and they don't move out of the way.  2) when I've been lying down for a while and then get up, the weight of everything shifts with gravity which causes me to grab my breasts and hold them for a minute...letting everything settle.  The good news is that my surgeon told me they'll never "pop out" of place if I bend over or reach for something quickly.  He knows me well...me and my irrational thoughts.

• Muscles- I'm not what you would call a fitness buff.  I don't really like working out.  I go in cycles, getting really into some exercise routine and then...nothing.  Let's just say the 'nothing' phase has lasted longer than it should.  That being said, my muscles at the top and sides of my breasts feel like someone just made me do 50 push-ups and then told me not to stretch.  Feel it?  They are pretty sore and tight.  Because they are tight, my range of motion is not great, so when I suddenly reach for something or try to go back to my normal daily routines, OUCH!  You can still forget those repetitive motions at this point, which, by the way, includes shaving my legs.  That causes pain for me.  

• Cording- Ok, so this is new to me.  I'm not sure if I have it yet, but in speaking with my nurse, we're keeping an eye on the possibility.  Cording is, in the lovely words of nurse Denise, "scar tissue or bands that form after a mastectomy. You are usually able to see and feel the rope-like band starting from the axillary area or right near it. It can extend to the elbow along the inner arm and cause pain or discomfort when trying to stretch the arm. Typically physical therapy is required to “break” the bands up. You might look into a physical therapist that specializes in or is familiar with post-mastectomy patients."  Let's hope this is not what I'm experiencing, and I'll bypass it, but I think its important for others to know its a possibility.  Here's a video demonstrating what cording looks like.

• Scars- There is a light at the end of this tunnel.  My surgical tape finally came off today in the shower.   My incisions look amazing, thanks to the precision of my microsurgeon Dr. Chrysopoulo!  They are clean, they are light pink and they are doing beautifully.  I also got permission to start applying InviCible cream to them to start the scar healing process.  I'm supposed to be massaging the scar so that it will hopefully soften up as well as lay nicely in the skin, not protrude out.  There is zero pain where my scars are, but I think that's due to being mostly numb on the underside of my breasts.

• Sensation- at this point, not a lot has changed from when I described them in How Do They Feel? 

By J.C. Stadler and Piercy Roberts After Adam Buck (Scanned by H. Churchyard)
[Public domain], via Wikimedia Commons

Exercises

About two to three weeks post mastectomy, depending on your surgery and healing, you'll be asked to do exercises to stretch your muscles and prevent the stiffening and scar tissue build up.  These are standard stretching exercises recommended to women post mastectomy, and are relatively easy to do.  That being said, my surgeon was not kidding when he said to approach every exercise as if its my first time.  Don't think you're going to hop back into yoga, pilates or even these simple to do stretches.  Your range of motion is different, your muscles are healing and you will need to take your time.  Be kind to yourself.

Medicine

One month out, I'm still on some Advil during the day, but cautious of not irritating my stomach by taking too much, and I still occasionally take 1/2  a muscle relaxer at night as my muscles are tight by the end of the day, and quite achy.  Other than that, the anxiety meds and pain killers are shelved.  

Emotions (updated 12 hrs after original post)

I thought I was past the highs and lows of recovery.  I'm a month out, I've been off the meds and I was getting back to life just fine.  But today, for whatever reason why, the emotions came flooding back.  My breasts are sore, I woke up at 3:30am to write this blog post and haven't slept since and at 7:30pm tonight, bam!  The tears started flowing.  I had been experiencing a lot of muscle pain throughout the day and was getting frustrated.  I put high expectations on myself, no secret, and I think I feel that I should be doing better than I am.  As I was getting ready for bed tonight and rubbing my scars with treatment cream, I began to cry.  I hated feeling the thickness of the scar under the skin...how it rippled under my fingers.  I'm not good with blood, surgical photos and creepy sensations in my body.  This was one of them.  It was all just too much and I broke down.  At this point, I don't know if its considered normal to be so emotional.  Just this morning I was so thrilled to get dressed with confidence and assurance, that I turned to my husband and told him I didn't have to hate my breasts anymore, that I could love them.  My fears were taken away.  And then an emotional swing the other way tonight...tears.  All I can say is let is all out when it happens, talk to someone and acknowledge it.

So, there you have it.  This is what its like one month post op.  Not terrible, but by no means back to normal.  It really is a process.  I wish writing this put me back into a state of sleeping bliss.  Lets go see who's on Twitter.  Night!

I Didn't Know What to Say

I often see articles written about supporting friends through mastectomies, and one of the most covered topics is "What Do I Say?"  I never understood this until now.  I had friends and acquaintances I thought I'd hear from, or hoped I hear from, but never did throughout my surgery and recovery.  I get it, kinda.  It's uncomfortable.   You don't want say anything offensive, you don't want to trivialize it or you just plain don't know what to say.  It's especially tough for guys.  Its not easy talking about breasts, or losing them, with your guy friends, although some really came through and I love them for it.   I've been in that uncomfortable situation of not knowing what to say.  I didn't know what to say to my own mother.  I was young.  We didn't talk about boobs.  Perhaps that's why I'm so overly open with my own children...and the world, talking about breasts.  I don't want people to feel awkward.  I'm open with all of you because I want to help bridge the gap.  In speaking to a friend of mine this morning, she said something to me that hit the nail on the head...

I can imagine it can be very isolating, others can sympathize but not really understand what you are going through.

Some things can hurt when said, and we know you don't mean harm by saying them, because after all, you're our friends, but they might.  I think people say these things because they are trying to lighten up the situation, they want to connect somehow, they honestly don't know what to do or say, or they're nervous.  So, they say them.  Now, that being said, I talk differently to my very close friends than I do my acquaintances, so I give them a little more liberty to be candid with me.   They talk openly about the new "girls" and I know they mean it with all sincerity and love.   However, these are things I repeatedly found in blog after blog of women going through mastectomies that hurt them.  These women ask that people don't say:

• things like commenting on a great boob job as a result of the surgery, or saying they can totally relate because they've had a boob job.  Don't say these things, at least not first.  You might have a close friend who is totally OK with this (I have close friends who were able to do this), but if you're not that close, let HER bring it up or say it first.  Not you.  Let her ask you about your boob job, implants or crack the first comment about her new breasts. 
• things like "don't worry."  We're worried, we've been worrying since we found out we were BRCA+ or since we made the decision to have surgery due to cancer.  Of course we're going to worry.  Its uncharted territory for us, even though MANY woman have gone through it before us and MANY women will go through it after us.  We only know ourselves and our own journey. So yes, we're going to worry.
• things like "you'll be fine."  We know we'll recover from the surgery, eventually, but it's a long journey of mental recovery, not just physical.  Yes, we will get through it, but "you'll be fine" kinda takes the whole journey away from us. 
• things like "can I see them?" or "can I touch them?"  Trust me, when we're ready, if we're ever ready, to share our new breasts with you, we'll offer it up first.  At this point, for me, it becomes an educational tool, but one that I get to share on my own terms.  You'll know who you are.
• things like "its over now, you can move on," or "why are you still upset?"  Its a journey.  Mentally and physically.  We have good days and we have bad days.  We have a constant reminder in the mirror every time we shower, get dressed and try to make a bra fit.  We might have to have revision surgeries down the road, shopping for clothes changes and our breasts are still settling for the first year.  So, no, its not over.  I'm four weeks out and people assume I'm healed and back to normal.  Nope, it takes time.

By Paul (Flickr: Happy Valentines Day) [CC BY 2.0
(http://creativecommons.org/licenses/by/2.0)], via Wikimedia Commons

So here's the thing.  There's no right thing to say that will fit every individual.  There's no magical phrase that is going to take away all the fears of a person going through this.  You can't change it and you can't take it away.  But, there are things you can ask or say that will show us you're by our side.  You know your friend best.  Here are some common things I found among blogs.  Things like:

• ask why we're having a particular type of surgery vs. another.  There are so many options these days, we want to help others understand.  We want to educate.  We want to hopefully save someone else's life, while feeling like a woman again.
• tell us how you can help us during the recovery.  We don't always know how to ask for help, and many of us won't.  There's too many other things on our minds that we're taking care of.  If you can't talk about it or are uncomfortable, send a "I'm thinking of you" card or even just flowers with no note at all.  We'll get it.  Tell our family which day you'll bring dinner or tend the kids.  Give a day off to the caregiver.  You be the decision maker.   We know that these gestures come from the heart when you don't know what else to do or say.
• don't feel like you have to have answers or a comeback to everything we say.  Let us just open up and spill it all out if it does happen.  When my daughter found me sobbing one night, she simply wrapped her arms around me and said, "I hope you feel better soon."  That was perfect.  She didn't try to fix me, she didn't tell me to stop crying, and she didn't tell me it was going to be OK.  She just let me be.  Acknowledge our emotions, don't try to divert them or brush them off.
• ask how you can help with or join us in our back to exercise routine.  When you've had a mastectomy, you have to treat any exercise as if its the first time all over again.  We have to go slowly, letting our muscles stretch, work on expanding our range of motion and deal with the pain of scar tissue.  Many go through physical therapy.  This is something many friends don't know about recovery.  

I'm blessed to have a husband who knew exactly what to do for me.  Not only did he take care of me every step of the way, he made an inspirational video for me to watch the night before my surgery.  What I LOVED the most was that it was friends and acquaintances sharing stories of my strengths, what they liked about me, simply being cheerleaders, telling me they were thinking of me and some even shared some laughter (knowing our relationship was tight enough).  No advice and no one trying to fix me.  I love this video.  It was perfect.

In the end, don't worry about saying the wrong thing, just make sure to let them know you are there for them and thinking of them.  Let them know in some way that you are a part of their support network as they go through all of this.  Like I said, you know your relationship best.  BFFs sometimes have a little more leeway with comments than acquaintances so, but we want to hear from all of you.  We love you.

Slow Down, Type A Not Needed

There's no award for the fastest healing nor the for the one who complains the least.

I'm in the recovery stage of my journey.  It's a very strange place to be, a bit unsettling.  The planning phase kept me very involved, occupied...it gave me lists to check off which I love doing.  I was taking care of travel plans, packing the family and making lodging arrangements.  The immediate pre and post surgery stages involved in the moment concentration, focus and healing thoughts.  People wrote to me daily, engaging me in conversation, taking my mind off things.  I journaled daily during my recovery phase for the first two weeks post-op, putting my restless energy towards the better...I hope.  And now, I'm in the post-recovery recovery phase.  It's that part where you're more independent, you are feeling good, you're out of your doctor's immediate care, but you you're still recovering.

Be kind to yourself during this phase.  I'm learning that it's just as fragile as any other part of your journey.  I learned the hard way, that while I may be "released", my mind and body still have a way to go.  We left San Antonio yesterday.  It was like a graduation in a sense.  I had completed my assignments and there was nothing further to do.  I passed the test.  We decided to make our way to Austin, Texas, a change of scenery, one more city in Texas to see before heading back to Houston and subsequently, Singapore.  My husband was dying to eat at the Salt Lick BBQ in Driftwood, so we detoured for dinner before hitting Austin.  

Slow down and take the time to see everything around you
that you'd normally whiz by.

While I do feel good and look great, I pushed it too far, once again.  We had spent three hours in the car by the time we arrived in Austin, plus another hour eating, all of which I was sitting upright.  Prior to the drive we had been getting ready and packing suitcases.  I hurt.  I was tired.  I cried.  I have this false sense of "I'm done!  Now what?" mentality.  It's like I need something to do at all times.  School is out for the summer, so I'm on holiday.  When I go out right now, no one would have any clue that I've just had major surgery, so why should I feel or act like I did?  I should be on holiday.

It's hard to slow down if you're not used it, if you're a little OCD or Type A like me.  But I really want to caution those who are, please slow down.  Don't think because you look fine, that you are assumed to feel fine.  Let yourself go through every phase of this journey that you need.  No one can dictate for you when your time will finish.  Give yourself permission to take time.  Everything still goes on around you just fine, as I've learned.  You have to let go of things and trust that you are doing the right thing for yourself.  

And please, find your outlet.  Your best friend, your spouse, your doctor...whomever, whatever.  Mine is writing.  It helps me process, it helps me to keep moving forward.

Day 13- Everyone Is Different

Well, the seroma isn't reabsorbing, so we're doing a needle aspiration tomorrow.  Simply put, a very fine needle will be inserted into each breast to remove the fluid which has gathered.  I tried to be the perfect patient, doing everything I was told (I didn't even have my first cocktail I asked if I could have due to guilt), but everyone is different when it comes to the healing body.  My body is choosing to take a different route to recovery, just how it is.

So, Xanax was recommended prior to the procedure tomorrow, as I'm already fearing that needle.  It's one thing to be completely knocked out for surgery, but being awake and seeing the needle go into my breast?  I told you I'm a wimp.  Anyway, I made my nurse promise she'd be with me every minute of the procedure tomorrow as she pretty much calms my anxiety.  Denise, I will get a photo with you and proudly display you on my blog before this is over!

So, please say a little prayer for my boobs and me tomorrow.

On an upside, we spent another wonderful day here in San Antonio.  If you come to PRMA, you will have such a wonderful area to explore while you're healing.  I still can't believe I've been in Texas for thirteen days already, tomorrow marking my two week anniversary.  We've lived in an Airbnb (best hosts EVER) and are now on our second hotel.  We wanted to keep things interesting during the stay.

Anyway, today we moved into a hotel on the Riverwalk and took the guided river cruise.  Y'all have so much history here!  I love this little hidden gem of San Antonio.  It's beautiful, relaxing and you make it as big or as little an adventure.  I chose to head back to the hotel after the cruise, as my body had enough.  My family continued on to the IMAX where they learned more about the Alamo.  As expats, my kids don't know much of American history, sadly.  We're trying to add in that educational element whenever we can.

You'll love San Antonio.  I'll have a complete list of things to do, places to stay and where to eat when I'm done here!  I'll share it all with you.

Day 9- And the Tears Flowed

Nope, no one ever said this was going to be easy and no one ever said I had to do it gracefully.

Today was a day where it was very hard to muster up a smile from the moment I woke up.  Tears were ready to flow, they just needed the gate opened.  I'm very good at seeming strong, seeming brave and being an...avoider.  Remember Wonder Woman?  I'm not saying that I've avoided any emotional trauma this experience has caused me, I'm simply saying that it's bound to take a toll.  So, here it goes, because I want every other woman out there who might be faced with this situation to know...IT'S OK.

IT'S OK TO CRY.  IT'S OK TO ASK FOR HELP.  IT'S OK TO NOT GET DRESSED ONE DAY.

IT'S OK TO (INSERT YOUR WORDS HERE).

When and if you choose to go through any number of the available preventative or reconstructive surgical options like I have, you've at that moment, made a life changing decision.  You've made a big decision that doesn't come lightly.  You'll research, you'll plan, you'll interview, you'll discuss, you'll prepare and then...you'll do it.  But what about the after?  All that work you've done to prepare for that five-eight hour operation is bound to catch up with you.  You just won't know when.  For me, it was today.

Sleeping has not been easy for me.  I lay on my back or slightly reclined and hope to feel comfortable enough to fall into a restful slumber.  But I ache.  I ache from so much bed rest, but I can't be up-out-and-about for more than an hour at this point without needing to sit down or feeling overwhelmed.  My drains hurt with every turn I make in bed or every time my surgical bra hits them.  Thank heavens for the 11 hours a day I get to wear a Lidocaine patch around my drain, and the hope of getting the last of the drains removed on Monday.  And my chest, while not hurting, feels heavy and tight on top of me when lying down.  So, I'm achy and tired.  Achy and tired = emotional.  Emotional = watch out...flood gates can open at any time.

When it was an appropriate hour of the morning this morning to actually be awake (we're in a hotel room in close quarters), I was already brimming with tears.  It only took the act of getting up and getting dressed for breakfast to make the tears flow.  I was hot, I was tired, I was sick of trying to hide the drains or finding clothes to wear.  I'm tired of living out of a suitcase, of not having friends to hang out with to kill time, tired of eating out and tired of not being able to just say, "hey, let's go here for the day," because my body won't keep up.  We're in a place we don't know, trying to think of it as a vacation, but it's really not.  

The tears just flowed.  My husband says I'm experiencing either anxiety about everything I can't control, or the beginning of depression, which I hope I'm not.  I think I'm just experiencing the low after the extreme high.  I am SO proud of myself, I kid you not, but remember, IT'S OK TO CRY.  I mean every word in every blog post I've written so far.  I've had wonderful days and I'm so happy with my results. But there was just something about today.  It was just a no-good, very bad day. 

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

I managed to get dressed and go to breakfast with my family.  Throughout the breakfast, there I'd be, with no reason whatsoever, brimming with tears again.  By the time we got back upstairs, I was tired.  I slept for maybe 30 minutes, and we spent the next hour trying to figure out what we could do with the kids, where I could be involved.  We thought of the Children's Museum which newly opened, but that was A LOT of walking and they hadn't yet received their wheelchairs.  We thought of a movie, but sitting upright for 2 hours in a chair I can't get comfy in didn't sound fun.  So, we thought of the special theaters with the reclining seats...nope, no one under 18 years old.  My husband even called medical supply companies in the area so that we could rent a wheelchair, but no one was open.  Finally, we decided the kids would go swimming to at least get some energy out and we'd try to do something again tomorrow.

I don't take my meds prescribed as I'm what you call a lightweight.  I try taking a 1/2 and even 1/4 of a pill, and I hate the way I feel.  I then get anxious, start to panic and make it all worse.  I would take a Xanax, but even that leaves me feeling ill in my skin.  I've got to figure this part out in order to help myself, not make it worse.  For now, Advil gets me through the days and Lidocaine gets me through the nights.  I'm not in PAIN.  I'm in discomfort.  Once my drains are out, I imagine everything will be so much better.  I'll be able to get dressed normally, not worry about the tugging sensation and everything can begin to heal.  We'll have two weeks left in Texas (I left myself a large window to recover before the 25-hour flight home) and I hope that we'll enjoy them, together.

None of this is anyone's fault.  Everyone is trying to everything possible to help me feel comfortable and get through each day towards a complete recovery.  My nurse, Denise, is wonderfully understanding.  My Doctor is just a Tweet away.  And my husband, he's Mr. Mom right now, plus my after-hours nurse.  He's "on" at all times right now, setting alarms in the middle of the night for my antibiotic or Advil or whatever else is needed.  He keeps a smile on for me.  He's doing all of this without a single complaint.  And I love him for it.  

So, today wasn't easy, and that's ok.  I say one bad day out of nine isn't too shabby.  Here's to  acknowledging today and looking forward to tomorrow, another day, another start.

IT'S OK.

* update: that night, I found myself once again not sleeping and crying from frustration at 1am.  My husband gave me 1/2 a Xanax and I slept through the rest of the night.  Yay!

Day 4, Oh So Sore

Apparently my body had enough of the "feeling good" stage and decided to force me into reality for a day.  This was my hardest day by far.  

Upon waking up this morning, I could tell things were different.  My drain sites were more painful, my left leg was constantly going into a tingling sensation and I still haven't had a bowel movement since before surgery (TMI but necessary to tell you in case you're preparing for this surgery).  We emptied my drains which are showing less and less output (shooting for 10ml or less over 24hrs), but that whole procedure of emptying drains still makes me nauseated.  I swear I can feel the suction happening inside my body as my husband strips them.  Who knows if I actually do, but it feels like it.

I spent most of the morning in bed upstairs in my Mickey Mouse pjs as the bed has become my security blanket.  However, I decided to venture downstairs to the recliner for a while, to again join the land of the living and see my kids a bit more.  Again, stairs are no issue.  Naturally, I fell asleep after 15 minutes of watching a show with my husband (I'm such awesome company right now!), and was later woken up by him giving me, yet again, more meds.  I'm in a constant fog and hate these meds.  You know when you see a trail behind your waving hand, as if in slow motion?  That's me, all day. I'm having my own little drug trip.  I'm still down to one Percocet at a time instead of two, and am now supplementing with Advil when needed.

Once awake, I decided to shift places to try and reposition my sore body. At this point I felt a lot of pain in my chest and became very nauseated, lightheaded and somewhat panicked.  I cried for hating this limiting feeling so much.  I still can't truly look at myself yet as it sends my stomach churning.  I don't have bruising and the cuts under my breasts aren't visible, but it's the touching of my breasts and them being numb that sends me over the edge.  It's just a complete disconnect for me.  I'm sure once I decide to fully look at myself and accept it all, I'll fee so much better.  It's just hard.

This is my amazingly wonderful doctor, Dr. Chrysopoulo
whom I'll always carry near and dear to my heart.  I honestly
couldn't have asked for a more kind, compassionate and amazing
doctor.  He was worth the ten year wait.

Luckily, today was the day I was seeing my doctor and I could find out if everything I was dealing with was normal.  Sitting in Dr. C's office and waiting to see him had already sent me into the woozy stage as I knew he'd be checking on my breasts, which meant undoing my pressure bra.  I feel like everything is in control when the bra is on, so much less pain, everything held together where it should be.  When the bra comes off, I feel everything letting loose and I don't like it.  I feel the pressure of the new boobs, I feel the dangling of the drains and all of that combined just doesn't sit well with my stomach.

The good news is that Dr. C and my nurse Denise were very happy with my progress and pleased to not see bruising nor signs of infection.  I was happy everyone else was happy, but I still couldn't bring myself to deal with looking.  More good news is that I might get two drains out on Wednesday as they are producing less than 10ml.  The other two drains are still at about 30ml.  Dr. C seems to think the drugs are just not for me.  I'm a lightweight, always have been (cheap date for sure).  Being in a fog and sleeping as much as I have been is not good for my recovery.  I need to be more alert and I need to be walking my 15 minute intervals to reduce blood clots.  For that reason, Percocet is done...I'm off of it.

My nurse also suggested warm prune juice as my stomach was now the size of a basketball and rock hard.  The colace and Milk of Magnesia were doing nothing.  No one warned me about the stomach swelling and bloating after surgery.  None of my pants fit!  So a warning to future ladies, bring larger pants!  One of the nurses said that some women gain 10-20 lbs after this surgery due to all the water retention and other fluids the body is trying to hold on to.  I only brought larger button down shirts for the post surgery, not elastic waisted larger pants!

Once back home, with my prune juice in hand, we ate dinner, celebrated my daughter's 7th birthday before grandma left and I drank that prune juice like nobody's business.  Come 9:00pm, let's just say my pants were beginning to fit again.

By baby girl is now 7.

                                       

Emotions: At Risk

  24 years ago today, my mother passed away from breast cancer.  Today, I’m sitting here in my home, alone.  No kids to tend to, no husband to talk to.  Just me.  Well, just the dog and me.  I’m not going to work, I’m not taking care of anyone else, and I’m going to try and deal with some emotions I apparently need to get out.  I haven’t done this in a very long time.  I always go to work, I always push through the day, I always keep it inside.  But when you start cracking in public, breaking down your wall when friends ask you simple questions, you know you need a break. 

“We all need a daily check up from the neck up to avoid stinkin thinkin which ultimately leads to hardening of the attitudes.” –Zig Ziglar

  When I need to get things out, I write.  I’ve always been a writer at heart.  I loved making story books as a kid, I took as many elective courses in writing as I could throughout college, and I’ve always been able to write my feelings down on paper better than I could ever say in words.  I don’t think writing is a bad thing, I think it’s actually quite therapeutic.  But when writing is all you know how to do when it comes to expressing yourself, I begin to see the problem.  I don’t cry when I write.  I don’t get hugs of support when I write.  I don’t get feedback when I write.  I don't even get eye contact when I write.  I put it all out there, on paper or on the Internet, in hopes of getting it off my chest, helping someone else and moving on with my life.

  I’m home today because I was told, just yesterday, that I need to cry.  Not a tear here and there, but a full on cry.  A bawling your eyes out, mad at the world, scream in a pillow cry.  A cry for my mother.  A cry for my father.  A cry for BRCA.  A cry for a list so long that it hurts…but I stay strong.  I cry when moving away from friends and family, I well up with tears when I see my children hurt and I quietly shed tears in sad movies, wiping them away in secrecy.  But I hardly ever cry for my thoughts, my experiences and my memories…myself. 

  Over the many years of sickness my parents went through while I was quite young I can’t remember someone telling me to just cry.  Of course I cried in my bedroom, or at a friend’s house or with a teacher at school when any of them asked my about my mom or dad, but I didn’t cry with my own family.  Instead, I remember family asking me if I was “o.k.”  At that age, I didn’t know what o.k. meant, so I just said yes.  I’m not the one sick.  I’m not the one in the hospital.  I’m not the one dying.  So of course I’m ok.  I stayed strong because I thought that was what I was supposed to do for everyone else.  For my mom.  For my dad.  I stayed strong because it was my mom and dad who were not ok…not me.  I didn’t cry for fear of making someone else cry and be more upset.  Turns out, this was called avoidance and little did I know, I’d later be ridiculed and slandered by some of my own family members for NOT handling death appropriately at the ages of 13 and 17.  So, today, I may or may not cry, it’s yet to be seen, but I’m going to let it all out...right here. 

  Today, for the first time, I’m realizing where so much of my recent pain and sadness are coming from.  After the passing of my mom, I have had years of worry, agony and constant reminders of death right on my chest.  I’ve always had a love/hate relationship with my breasts. But mostly hate.  I’m sitting here today, home and alone, reflecting on my mother and all she went through.  I’m thinking of how scared she was.   How unfair it all was.  I'm thinking of her and how on Earth she was dealing with the thought of not watching us grow up.  How I wish she had today’s opportunities back then.  My mother actually asked for a prophylactic double mastectomy back then…but it was deemed “too radical” by doctors.  My grandmother was quoted in an LA Times article written in 1991 saying;

"I thought I was helping my daughter do all the things that were necessary. And she followed all the rules. What is frustrating is that the results from treatment now are not a heck of a lot better than they were when I had cancer. I am watching her two daughters, ages 22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it will. Twenty-five years after my cancer, why should I still be worried about my granddaughters?" 

LA Times

 

I’m now, at 38, preparing to save my own life, and it’s all just too real.  My mother was 40 when she was diagnosed, my grandmother was 40 when she had her double mastectomy, and here I am, 38, trying to beat a family curse by two years.  Of course today is especially hard.  I’m wishing my mom had the same fighting chance I’m being given and am preparing for, and it’s taking me on an emotional roller coaster.

  I decided to take control of my life and hopefully, stop the worry back in 2005, just after having my son.  I was going to have the BRCA genetic test at Huntsman Cancer Institute in Utah.   I had heard mumblings about it here and there, but it was nowhere near as talked about as it is now.  This was years before Angelina Jolie…and I’m thankful someone like her could use her platform and get the message out to the masses today.  I thought long and hard about getting the test, even meeting with a genetics counselor and a surgeon, Dr. Saundra Buys, at Huntsman who helped guide my husband and me through the process and come to terms with what the results of the test could do to my family and me…emotionally.  I remember the series of questions that hurt the most and made me well up with tears…”You have a beautiful boy now.  Are you done having children?  What if the next one is a girl?”  You see, each of my children now has a 50% chance of getting my BRCA gene.  Those questions were the most in your face, hardest questions I’ve ever have had to answer, and probably ever will.  For me, I had seen how far options had come along to help myself, and I had faith that there’d be even more options for them as they grew up. 

  I had the test, and tested positive for the BRCA1 gene (Breast Cancer), as did my grandmother, who took the test first which helped open the doors to a cheaper test for me.  On average, if you took a random sampling, about one in 400 would carry a BRCA mutation.  Testing positive, and having a long line of breast cancers in my family, meant that I had a 65-87% chance of developing breast cancer over my lifetime, that’s hard to swallow.  Why the large spread?  Depending on the doctor and the comparison group used, I got the answer of 65% risk as compared to large average population sample, to 87% because of my very strong family history being compared to other very strong history family cases.  I was not surprised by the results as I think I always knew, but it doesn’t mean I wasn’t mad either.  I also learned that with a BRCA diagnosis, IF I were to ever get cancer, doctors would fight aggressively, as the genetic mutation makes it very difficult for my body to fight cancer. But we’re not done there!  Thanks to this BRCA gene, I now increased my risk for ovarian cancer!  What?  This whole time I’ve been focused on my ticking time bomb breasts, and now I have to worry about my ovaries? I was angry-mad.  I did the “why me” for a while…still do on occasion.  But I also knew that having the results would somehow help me with the “next step”…whatever that was at that time. I wanted more children and I wanted to breast feed, so immediate surgery, breast or ovary, was not in the cards for me.

  At the age of 28, I was beginning mammograms and ultrasounds, every 6 months.  This was a hard time for me, as I couldn’t have anything done while pregnant or nursing, so my scans were few and far between for the next 4 years.  During that time, I kept wondering…am I developing cancer and don’t know it?  Am I going to have to go through what my mother went through?  Once I had my youngest, and I knew I was done having children, my regular 6-month screens began.  I was being steadily proactive and that was going to ease my mind, right?  Wrong. 

  I’d go in for mammograms, holding my breath both for the scan and for the results, every 6 months.  The MRIs were worse.  First I had to face my fear of needles, a fear that began from an overnight stay with my mom in the hospital.  Then, the banging, clanging God-awful noises that came out of that machine, no matter how loud the music in my headphones, lead to an incomplete MRI and me to having my first panic attack in the Fall of 2013.  30 minutes of the 45-minute procedure…wasted.  What was I doing?  I felt like a hamster on a wheel, jumping from the mammogram wheel to the MRI wheel and driving my self completely crazy twice a year.  And what were these scans doing to me overall?  Surely living my life like this couldn’t be healthy.

  November 2014 turned out to be the turning point for me.  I went in for another routine mammogram, on Thanksgiving Day.  The same day my youngest was having a tonsillectomy and adenoidectomy.  I had prayers flying out left and right that day.  My husband took my daughter to the hospital to get her settled in for surgery (he’s the strong one), while I took the older kids with me to get my mammogram.  Everything was supposed to be normal, another mammogram, in and out.  But this time, I went in, came out and went back in.  I had never been called back into the mammogram room…ever.  My heart raced, tears came to my eyes, and I was texting my husband ferociously while holding back the utter panic welling up inside me.  Once again, I couldn’t let those around me see me cry.  Once again, I held it all back in order to be strong for my own kids.  Not because anyone told me to hold it together, but because its what I was used to doing.  Because it was just...me.  So, another few squeezes of the machine and I was dismissed with a follow up appointment that night at 5pm.  That night?  When have I ever had results immediately read and met with the doctor on the same day?  NEVER. 

  This was it.  This was when it was happening.  This was the day that would change my life forever.  I left the building with all of my worst nightmares coming true in my mind.  I was in a haze of fear while traveling in the taxi from my hospital to my daughter’s hospital.  I remember texting my BFFs on the way, not for them to panic with me, but to just let someone know I was scared.  Luckily, I made it to the hospital just in time, as my daughter was just released from surgery and moving into recovery.  I put on the scrubs, went into the OR recovery area, and held my little one’s hand.  Everything disappeared at that moment.  I was completely in the moment as I listened to my groggy daughter talk through the anesthesia.  I was completely there…for her.  And I was thankful.  I was thankful for her surgery that would help her live a better life.  I was thankful for the chance to be her mother.  Sure, I knew I had an appointment later that night and I was scared, but I kept it all inside.  I didn’t even have time to talk to my husband about it all as we were so focused on the kids for the next few hours at the hospital.  As my daughter recovered from surgery and my husband left with the three kids in a taxi heading home, I made my way to the doctor’s office, one I'd never met. 

  Behind the desk sat a cold, expressionless doctor.  The room was small, tiny actually.  She fluttered with papers from her appointment before me, opened a new, empty folder, grabbed a pen and looked at me.  “So, tell me why you’re here.”  I’m sorry, did you not read the report from the mammogram I just had?  I must have said something to that effect in my out loud voice, as she opened another file and simply stated, ”Looks like you have a cyst.  It’s nothing to be concerned about.  You’ll come back in 4 months to check on it.”  Really?  That’s how we’re leaving it?  You’re summing up my last five hours of panic into that?  I don’t want to “check on it” after 4 months!  What is it?  What are we going to do?  Where’s that preventative prophylactic mastectomy option?  Again, I must have uttered words close to these as she then pulled out her iPad and all of her research she’s presented.  Basically, what I got from her lecture was that she’s not a believer in the procedure and IF I do get cancer, we’ll do a lumpectomy and figure out a course of treatment from there.  OH.  MY.  GOSH!  Get me out of here…now!  I found another doctor, Dr. Tucker, by referral and scheduled an appointment with him a few days later.  Thankfully, he became the voice of reason, the voice I needed and the voice I listened to.  He knew I didn’t want to even GET cancer.  He knew that I couldn’t handle hospitals.  He knew I had seen the effects of harsh cancer treatments first hand and how badly I didn’t want to ever experience them.  And he knew I never wanted to leave my beautiful children because of cancer.  Dr. Tucker knew.

  In a matter of weeks, I was in overdrive mode.  Friends who know me well just call it “Heather mode.”  I’m an information gatherer.  I’m a planner.  I’m an organizer.  I have been consuming my free time with nothing but surgery related tasks.  I’ve been researching doctors in the US, talking to women from my online forum about their doctors and results and getting as much information as I could about which type of surgery I wanted.  Implants?  Stomach tissue?  Keep my nipples?  Tattoos?  I haven’t even stopped to really process it all.  I just keep moving forward.  I’m doing it.  This is it.  10 years later, from my initial BRCA1 diagnosis, I am going to do something about it.  I’m making a choice to take my risk from 87% to 1-5%...that’s a big deal.  And my future has now fallen into the hands of Dr. Chrysopoulo in San Antonio.

  The hardest part of the process has been trying to figure out how I’m supposed to feel.  That doesn’t even make sense, right?  One day I feel like I want a “goodbye to these ticking time bombs party” with my friends, celebrating my chance at never getting cancer, and the next day my eyes are welling up, wondering why I have to go through all of this at all.  One day I’m sharing information with friends in a casual conversation and the next day I’m crying at the slight mention of the impending surgery.  I imagine this will continue, long after my surgery.  You see, I get told all the time, “at least you’ll get awesome boobs out of all of this!”  I’ll be the first to admit that those words come out of my mouth too, but I think I use them in avoidance of not talking about what we’re really talking about.  I mask my emotions pretty well, much of the time.  Remember the no crying thing?  My husband knows not to joke about me having a “boob job”, he takes my lead on the conversations and my mood at the time.  If I have a moment of “it might be nice having perky breasts again,” my husband follows with supportive comments.  But then I follow with a moment of me punishing myself for being so insensitive the real situation and how dare I joke about something so serious.  But it’s my life to comment on, my emotions, my feelings towards my breasts.  But I’m not having a boob job!  I’m having breast reconstruction.  Wait, I’m having a mastectomy and breast reconstruction.  Nowhere in any document I’ve read has it said “Congratulations!  You get a free boob job because you're BRCA+!”  I’m not going into the details of the differences between breast reconstruction and breast augmentation, nor am I diminishing the fact that both involve surgery, but if you’re curious about the differences, please Google it.  They are very different roads traveled. 

  Yes, I will be proud that I’ve taken this drastic step towards saving my life and being around for my children.  Yes, I’ll try my best to embrace my new breasts and be proud of those, too.  And yes, I’ll wish that my mother could have had the same opportunity that I’m about to get.  No, my breasts won’t be the same, hell, I probably won’t be able to even feel them anymore, but they’ll be mine to live with.  They won’t be perfect either, and I’ll probably always find faults that no one else sees, but they’ll be mine.  I’ll have a constant reminder, again on my chest, but hopefully I’ll have taken all the fear away...the ticking time bombs will have been detonated.  Hopefully I’ll be able to see them as the new me, the healthier me. 

  So there you have it.  24 years ago today my mother passed away from breast cancer.  I’m home today to try and reconcile some emotions I’ve had bottled up.  I’ve taken the time to examine the path I’ve traveled, the ups and downs, the curve balls and the road ahead.  I realize that there is no right way to react to some of life’s hardest events.  There’s no perfect way to handle the topic of breast cancer.  Everyone is going to have a different perspective, based on his or her own life experiences.  My view on my surgery and my outcome may be very different to someone else’s, and that’s ok.  I just might have that “goodbye to these ticking time bombs” party…and that’s ok.  I guarantee I will document and share the entire surgical and recovery process as well, because it’s a way for me to talk, a way to share, a way to deal with my emotions.  For me, writing is my crying for now.  Some day I might begin to really weep as my friend wanted me to today.  Maybe when this is all over, I’ll sob like a baby, thankful that its over…for now.