11 Years Later: Checking In and Reconsidering

It's been a long time since I've written here. Almost 11 years, actually. For a while, that silence felt right. Things were stable. My health was solid. My bloodwork came back fine year after year. My yearly mammograms and ultrasounds looked good. I was living my life, raising my kids, and didn't have much to report that felt urgent or necessary to share.

But here's what I didn't talk about: the small things. The things that pile up quietly in the background.

About six years ago, I was diagnosed with fibromyalgia. Two years ago, I developed muscular fasciculations in both my legs. Since my oophorectomy, I haven't been able to sleep through a single night without over-the-counter medication. I've been dealing with burning at my chest bone, on and off, for longer than I want to admit. There's brain fog. There's an overstimulated nervous system that keeps feeding back into itself. These aren't huge, dramatic health crises. They're just there. Persistent. Nagging.

And I've been asking myself a question I never really articulated out loud before: Are these things just what happens when you get older? Or are they connected to something bigger?

This November, I'm turning 50. It's a milestone that's been sitting with me for a while. I lost my mother to breast cancer when I was 13, and every birthday past the age she was when she died feels significant. It makes you think about your choices. About your body. About whether the decisions you made years ago (that were 100% right at the time) are still serving you well.

Eleven years ago, I had my implants placed after my mastectomy. That was the right choice for me at the time. It was the easiest choice for recovery with three very young kids and an International flight from Singapore to Texas. I felt good about it. And for the most part, I still do. But at 11 years, which is around the timeframe when implant replacement becomes a consideration, I'm finding myself wondering about things. Questioning things. Reconsidering options I said no to years ago.

I have a surgery date of April 9th scheduled at this point. A surgery to have an implant exchange. However, I have also have a consultation scheduled for October to ask some questions and perhaps get some more testing done. Not to make a concrete decision yet, but to ask more questions. To get informed. To figure out what my body might actually need. Do openly discuss whether or not I potentially have BII (Breast Implant Illness) and if implants are the right next step.

And I think this matters. I think it matters because too many of us are living with small, persistent symptoms that we chalk up to aging or stress or just the way things are. We don't talk about them. We don't ask questions. We just keep going.

But I'm going to talk about it. I always do! And I'm going to figure it out. And I'll share what I learn along the way.

This is the beginning of a new chapter for my blog. Not the end of the old story, but a new part of it. Stick around.

When Dad Undergoes BRCA Testing

* UPDATE: I am negative for the BRCA gene.

Breast Cancer Awareness Month means a great deal in our house. It’s not just another reason to re-post something on Social Media and forget about it. Here’s why. 

My wife, Heather, lost her Mother to cancer. Susan was 41, and Heather was only 13. Heather’s grandmother also had cancer in her lifetime, and if you’ve read Heather’s blog and social media posts, you’ll know about the elective, preventive measures she’s taken to reduce her risk. She has also written two children’s books based off the conversations we’ve had with our own kids. The goal is to help other kids who might be going through the same issues and having the same questions. 

I’m so proud of the active stance Heather takes related to matters relating to breast cancer. She gets herself out there and tries to help who she can by sharing her story. She uses social media, blogs, shows up as a guest on podcasts and video interviews. She really walks the talk. So, what can I do to show my support this October? Well, I decided to get tested myself. After all, my paternal grandmother died of cancer, and both my father and his only brother have dealt with prostate cancer themselves. So today, I spit in a test tube and my doctor will ship my DNA off for testing for BRCA1 and BRCA2. 

Genetic testing isn’t new to our family. Heather was tested for the BRCA mutation years ago as was her Grandmother while she was still alive. Fast forward to last year, I myself was tested (via 23andMe) in search for explanations regarding my own health. I learned a few things related to my own health, such as a genetic variant in the MTHFR gene which won’t allow my body to process folic acid the same way “normal” people do. But I digress. 

This isn’t just a test for how my body metabolizes a B Vitamin. We’re talking about looking for a predisposition to deadly disease. I must admit that I’m a little nervous. However, I’ve always preferred knowing. I’m the guy who would rather people be honest and upfront with me now, even if potentially difficult to accept, to avoid hurt feelings later. I’d rather know, and as the G.I. Joe series told me when I was a kid, “Knowing is half the battle!” Go Joe.

Oddly, the anxiety I have is from what the results means to those around me. My wife has already been through so much. Because she’s positive for the BRCA1 mutation, she already worries about the 50% chance each of our kids carries that same mutation. What happens if I, too, have that mutation?  What about any of the other 30 genes that for which Colors tests? I really don’t want her to stress even more, but I also know she’s happy she found out. And of course, we’ve discussed this, so I’m confident she’ll be okay.

What about telling my kids? Yes, I want to know, but do I share my results with our children? They already have some burden knowing that they have increased risk. At 10, 12 and 14 years old, are they ready for the additional weight on their little shoulders of knowing there could be others? We’ve asked about BRCA and whether they would want to know, and when. Two of them want to know. One, the youngest, doesn’t want to know her own results. The good news is that they are all willing to talk about it. At least we’re talking about it.

Then there’s my only sibling; my brother. Obviously he potentially carries any mutation or variant that I carry since it would have been passed from one of our parents, and he also has three kids of his own. The weight of this decision spreads across the branches of the family tree. 

Lastly, something my wife hasn’t experienced herself as her parents died many years before genetic testing was available; the guilt my parents could carry from knowing it’s passed from them. Not that they should feel guilty, of course. It’s nobody’s fault. If we worry about passing on “broken” genes we’ll stop populating Earth altogether. Probably not a good choice. However, I already know that it’s difficult to know that my son has the same MTHFR variant as me, and I can’t help but feel some responsibility. 

Occasionally this Winston Churchill quote surfaces;

“The truth is incontrovertible. Malice may attack it, ignorance may deride it, but in the end, there it is.”  

It means we can’t deny truth, whether we choose to know it or not. Facts don’t discriminate. Sometimes we fool ourselves into thinking ignorance is bliss, but the fact is that ignorance can harm, or even kill us. 

Truth empowers us. It allows us to take meaningful action, even if at first it hurts.

Heather and I made the decision to KNOW all those years ago so that she could do everything in her power to live a long  life with our kids, something her mom and dad were denied. I’m sure that they would have done exactly what Heather has done; they would have taken every measure available to them to extend their own lives. It goes without saying that Heather wants to be there for every graduation ceremony, wedding, and someday the birth of our grandchildren. So do I. And if I can be given information on how to increase those odds, I’m game. 

Another important thing for me, and my advice to anybody making these choices, is to seek genetic counseling. As I read the Color Genomics consent form this morning (I know, who ACTUALLY reads those?), I noted that they offer genetic counseling at no extra cost. This is a huge bonus in my opinion. My doctor provides great counsel in the context of how we can use it to holistically address my health, but I will absolutely contact Color and take advantage of that genetic counseling service. Our BRCA journey started with an amazing team of counselors and physicians from Huntsman Cancer Institute in Salt Lake City, Utah. The team there, over 13 years ago now, set the stage for taking an informed approach to all we do. They helped us navigate considerations that we hadn’t thought about. These thought provoking discussions have helped us better manage our own expectations and those of our loved ones. 

So for now I’ll wait for my results and consider these questions with my wife. Until then, I’ll be satisfied that “knowing” is in my future, and for me, knowing is half the battle. 

Losing My Mother, Previving For My Children

Thank you to Grey Genetics and Patient Stories for having me on to discuss my journey with BRCA and surgery, but more importantly, for allowing me to discuss my children, who were/are a big part of all the decisions I made along the way.

Please click the image below to hear this podcast.

Show notes from Grey Genetics

At just 13, Heather lost her mother to breast cancer. Fifteen years later, a mother herself, Heather had genetic testing done and learned that she carried a mutation in a BRCA gene. Heather shares her experience as a previvor–from genetic counseling to finding the right doctors to her continued involvement in the BRCA community and the many changes she’s witnessed since she was tested in 2005.

Interview Reference Points: 

Heather learns that she carries a BRCA1 mutation @ 1:20

Making major medical decisions and finding the right doctors @ 7:54

Heather’s children’s books @ 19:59

Heather remembers her mother @ 22:19

Heather’s surveillance today and memories of scanxiety @ 27:24

The Breast Advocate app @ 29:14

Life after an oophorectomy @ 31:30 

Heather’s children’s and their BRCA risks @ 36:07

BRCA resources: then and now and the shift toward shared decision making @ 41:00

Heather’s advice to individuals considering genetic testing @ 43:35

Heather’s advice to individuals looking for the right doctors @ 45:08

My BRCA Story (Heather’s blog)

The Breast Advocate app

Breast Reconstruction Resources:

Terri Coutee on Twitter: @6state

The Diep C Foundation

The Diep C Journey Facebook Group

Heather’s books on Amazon:

Why is Mommy Having Surgery? She Looks OK to Me: For families with BRCA risk and undergoing prophylactic surgery and implant reconstruction

This Much I Know

Long Term Surveillance...Yes or No

This past week, I was fortunate enough to be asked to sit down for an interview and discuss BRCA as an expat.  One of the questions I was asked focused on the choices out there for women who find out they are BRCA+.  The one I always discuss, is the preventive prophylactic mastectomy, because, well, I had one and that was the topic everyone was curious about!  I didn't focus as much on the 10 years I spent doing surveillance due to having babies and being an expat.  But I feel that needs just as much discussion these days, because there are a lot of women out there who want nothing to do with surgery...just yet.

I look back, and I think about how crazy it is that I went through all this testing and getting my BRCA+ results before the Angelina Jolie Effect.  I had nothing to read online, no one to guide me and certainly no one to see photos of who had had a mastectomy and direct to implant surgery.  What I did have was a great team of doctors and a genetic counselor at Huntsman Cancer Institute in Utah, who were able to talk to me about my options at the time.  

Because I had just had a baby when I got my results, and I fell pregnant again, it was recommended to delay any surgeries for a while, and because I was breast feeding, even my mammograms and MRIs would be delayed.  That was the hardest part for me.  I knew for sure that I was BRCA+, but I still couldn't do anything about it.  I honestly would have had the surgery that day if I could have.  I was on self breast exam surveillance mode, and as soon as I could, I'd begin alternating MRIs and mammograms every six months.

Photo from Pixaby

I finally had my first mammogram in 2007, 2 years after learning I was BRCA+.  That was a long time to keep wondering, will I get cancer before I try to prevent it?  I was done breastfeeding my second child and I hadn't yet fallen pregnant with my third.  I held my breath before, during and after as I waited for results.  Luckily, it was negative.  After my third child was born and I was done breastfeeding, I had my first MRI, in 2009.  I hated every minute of it, and wished more than anything that I would never have to have another one again.  That began my surveillance, on a regular six month cycle, for the next six years.  Why did it take me six more years to finally have surgery?  Because we decided to pick up the family and move to the United Arab Emirates for a teaching position in 2010.

So, there we were, plopping down in the middle of the desert, and the first task I had was to find a new medical team, let alone, how to get a mammogram or MRI under my new, foreign insurance.  It took A LOT of talking, A LOT of doctors offices, and A LOT of panic.  I was an anomaly.  Doctors in the Middle East didn't have much experience with BRCA in 2010.  They honestly didn't know what to do with me.  

Thankfully, persistence paid off, as I found Tawam Hospital in the Emirate of Al Ain, a partner of Johns Hopkins.  Finally, people who knew what I needed.  They set me up on my six month schedule of MRIs and mammograms, and actually told me NOT to have reconstruction surgery in the UAE, as they just weren't proficient in it yet.  I couldn't go back to the States for it, due to insurance, so surveillance it was.  I continued my six month routine, holding my breath before, during and after every scan, developing scanxiety, and just worrying more and more that I was playing with fire.  Would I develop cancer before I could actually do something about it?  It wasn't a way to live.

I felt like a clock was ticking as entered my 30s.  My mother and grandmother were diagnosed by 40.  I was getting closer and closer to that age with each passing year and each passing scan.  From 2010-2014, I lived in the UAE and had no choices for preventive surgery.  But, in 2014, we moved once again, to Singapore.  I found a doctor who referred me to my first MRI and mammogram in Singapore.  Unfortunately, it was my first abnormal scan, they found a cyst.  All that went through my mind was how I waited too long and I shouldn't have done surveillance for so long.  I should have been more proactive.  As I discussed the results of the scan with the doctor, her response was to do a lumpectomy or watch it for six months to see what happens.  WHAT?  I'm BRCA+ and you want to "sit on it"!  I was out of there and began a furious search for an expat doctor.

It was here that I met a phenomenal expat doctor who trained in genetics and oncology at UCLA.  We discussed my recent scan and my history, and he was shocked that I had lasted this long with surveillance.  He was putting wheels in motion after our first meeting.  Luckily, my husband's new insurance covered me in the States, and I could pick the doctor of my dreams and have the surgery I had been waiting for after 10 years.  In 2015, my six month scans were over, and I had my preventive prophylactic mastectomy.

Surveillance isn't for everyone.  As I mentioned earlier, I wished I'd had my surgery right away.  Those 10 years were awful for me.  I hated wondering and not knowing.  I hated taking that risk of waiting.  It's an internal conversation you need to have with yourself, but also with your genetic counselor and doctor.  Do what's right for your situation.  If you have questions and are wondering about how to navigate all this information, please download The Breast Advocate app.

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.

2 Years Post Bilateral Mastectomy and Reconstruction

I'm calm.

That's all I can really say.  The past two years have given me a calmness I haven't known since my mother was diagnosed with breast cancer when I was a child.  I always had that fear of the unknown in my head.  I was always thinking of myself as a ticking time bomb, just waiting for the diagnosis.  Because, lets be real, once you have a grandmother and mother go through the breast cancer diagnosis, and you get his with the confirmation that you carry the BRCA1 gene, how could you not?

So fast forward two years from my surgery, and I no longer fear anything with my health.  I made it through my 40th birthday with the biggest sigh of relief, as it was just after my mom's 40th that she was diagnosed.  I don't have to go to appointments every six months for MRIs and mammograms.  I'm "normal".

As for my implants, I haven't had any issues since the "lump" I had in my last update.  It was just surgical scaring.  But lets be real, when you're in a position like mine, you react quickly and get EVERYTHING checked out.  I was relieved to know that my lump was nothing to worry about and I could continue moving on.

The implants themselves look great.  You can't see my scar as its so well hidden underneath the breast, and they feel great.  They look like they did when I was younger, before having kids, not like having implants.  I have no more pain, no more nerve twinges and I even got some feeling back in areas that I thought would be numb forever.  Now don't get me wrong, there are still numb areas, but I'm just happy its not all of it.

Feeling great and traveling the world with a new view of life.

I know there are so many options these days for reconstruction...you just have to pick the option that works best for you.  If you'd like more information about DIEP surgery, using your own tissue instead of implants, please visit my friend's page, DIEP C Foundation.  She has a wealth of information.  Also, reach out to any of the doctors at PRMA, mine being Dr. C, as they truly are miracle workers and family for life.

As for reconstruction updates, I think this is it!  Two years out, doing great!  If anything changes, I'll be back, and if you have questions at any point, please feel free to reach out.  I'm always here, even if I'm not updating on my mastectomy.  Make sure you check out my oophorectomy posts if you feel that you're going down that road as well.

Lots of love.

Heather

My First Lump Experience, After Mastectomy

Let me start with this, EVERY lump and bump will worry me for the rest of my life.  It's not over just because I had surgery.  If a lump forms, I'm going to worry.  That being said, I'm also going to let you know that this lump I found turned out to be a suspected undulation of the implant, so you can continue reading just for the education and my experience.

Thursday

At this point, I'm seven months post surgery, and overall doing great.  When you have a mastectomy with implant reconstruction, you're bound to still have numb areas of the breast, like I do.  When I get an itch that I need to scratch, its sometimes hard to find and satisfy with a scratch, causing a bit of a comical scene.  Two nights ago (Thursday night), while lying in bed, one of these itching scenarios happened, which led me to finding my first ever lump in my breast.

You're probably thinking, "What?  You can't get lumps after having a mastectomy!"

Well, yes you can, actually.  

As many people may know, the risk of recurrent breast cancer after any type of mastectomy is not zero. A woman who has had a mastectomy can still get breast cancer, although there is a very low risk of recurrence. This is because it is not humanly possible for a surgeon to remove every microscopic cell of breast tissue. The goal, however, of mastectomy is to remove any gross visible breast tissue seen by the surgeon. In contrast, at the nipple all that is left behind is skin. (http://medicine.stonybrookmedicine.edu/surgery/blog/faqs-about-nipple-sparing-mastectomy-what-women-need-to-know)

There a couple types of lumps and/or hardness which can occur after a mastectomy with reconstruction, and I'm learning about all of them now, only because of the lump I discovered (See below for different types of lumps).  When I found it, my first reaction, within those first couple seconds was, no, not possible.  Nothing was visible from the outside; no rippling, no redness and nothing sore.  I ignored it for maybe an hour, but then came back to it, making sure I was feeling what I thought I was feeling.  I rubbed it, tried to roll it between fingers...anything I could do to try and decipher whether it was muscle, a true lump or my imagination.

By User:Starr4ever:) (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)], via Wikimedia Commons

I proceeded to feel all around both breasts.  Smooth as butter...can't feel a single lump, ridge, fiber...nothing but smoothness.  I went back to this area.  Yep, definitely different.  At that point, I got online and messaged my plastic surgeon (thank goodness for social media).  Now, most people would say, you felt a lump, go get it checked no matter what...why are you taking time to get online?  Well, I was in half panic and half denial, he's my breast surgeon and I was alone in my house.  I needed to reach out, get outside of my own head, and seek advice.  He said it could be fat necrosis or scar tissue, but he knows I won't have peace of mind until I have an ultrasound.

I then messaged my GYN who just completed my Oophorectomy on What's App with what I had found and my surgeon's suggestion.  Again, you're asking why her?  Well, it's night time, offices are closed, and she's online.  I needed to talk to someone here, in Singapore, to get some sort of ball rolling.  She agreed with my surgeon and asked if she should schedule an appointment with someone for me.  I don't know why, but I started to doubt myself at this point, and didn't immediately respond to her.  I became embarrassed.  Am I overreacting?  Is this all because I'm terrified it actually could be something, so I naturally want to avoid it?  Am I making a mountain out of a mole hill? ZERO pun intended.   I'll tell you this ladies, no one can tell you how to react or when to be scared when you are high risk and have gone through these surgeries to try and save your life.  

I finally wrote back and told her I'd wait until my husband got home, and have him see if he could feel what I had felt.  I know, why wait and why did I need him to feel too?  For me, it was like my pregnancy test.  I didn't believe the first one, and proceeded to take three more before believing I was pregnant.  I had to wait until the next morning for my husband due to his late nights this week.  

Friday

When my husband felt, he definitely felt the lump too.  He couldn't tell if it was round or not, or if it was muscle or not.  But he could feel something.  After he left for work, I screamed the F word a few times and I broke down, sobbing like a baby for a few minutes.  It doesn't help that I'm sleep deprived and my hormones are out of whack.  I messaged a few close friends, just for support, because it really can be lonely when you live overseas, and I tried gathering some strength from their positivity.  After pulling it together, I messaged my GYN, as well as my physician/oncologist, Dr. Tucker, and let them know that I was ready to move forward in putting my mind at rest.  Because really, how cruel can the world be, after all I've been through?  It had to be nothing.

I couldn't seem to get an appointment anywhere last minute.  I tried my follow up breast doctor, fully booked throughout January.  Dr. Tucker's office tried another doctor, fully booked.  While this was all happening, I noticed my belly button incision from my oophorectomy was red, tender and slightly oozing.  Two weeks post surgery I wouldn't expect this to happen.  So, lets add one more thing onto the plate and message my GYN again.  Bam, I had an appointment scheduled for first thing Saturday morning, 8:30am (today).  I cried a lot today.  It was a mixture of releasing a lot of tension from this year, disbelief that I am actually going through these movements right now and just overall exhaustion.

Saturday

This morning I was on my way to my GYN.  Upon examination of my belly button after the oophorectomy, I was given some ointment to use twice a day to help it heal.  We then got down to business regarding the breast lump.  She felt the left breast first, getting a baseline of what my new implant breasts feel like.  She didn't want me to tell her where the lump was on the right breast, to see if she could discover it on her own.  Sure enough she did...1:00 position, 1/2 in in size.  She got me into an 11:00am slot with her breast surgeon, Dr. Woon, and I was off, yet again, to another appointment.

Upon arrival at the next hospital, it was lucky that the elevator lobby was so crowded that it began sending me into panic from too many people, because I was able to walk the nine flights of stairs which helped me focus, calm down and exhaust myself a bit.  By the time I made it into the doctor's waiting room, I was too tired to panic or worry anymore.  Dr. Woon called me in, went over my history of BRCA1, surgeries and other health history, then had me get on the examination table.  She felt it right away, and she too wondered what it was.  Out came the ultrasound, but she couldn't find a thing.  Everything was smooth and clear.  No cysts.  She seemed a bit perplexed, so poked a little deeper until she saw some undulations in the implant where I had felt the lump.  She then attributed what I'm going through to just that, undulations.  Now, I'm no doctor, so of course I'm going to relay this information back to my surgeon, just so he can help me understand all this, but he's sleeping right now, so an answer will have to wait. :)  

The one thing that rings in my ears from today, is my GYN telling me, "you're allowed to overreact, because its not overreacting in your case.  We want you to be vigilant, we want you checking and we want to be preventive."  So, while some people will never know what its like to feel a lump, thank goodness, others need to know its ok to panic and its ok to seek attention asap.  

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

Types of lumps:

Fat necrosis: (I did not have flap surgery, but necrosis can still happen with leftover areas)

Occasionally there can be a phenomenon called “fat necrosis” in the newly reconstructed breast mound. That is when the fat from the abdominal flap does not receive enough blood supply in its new position and forms a scar as a result. It will manifest as a hard lump under the breast skin which can feel alarming upon detection. Your plastic surgeon can usually differentiate between fat necrosis and cancer recurrence on clinical examination. If there is any doubt, then you will undergo a needle biopsy or a MRI to arrive at a diagnosis. (http://www.bra-day.com/breast-reconstruction/)

 Capsular Contracture: (remember my Victoria Secret exercises I do?)

If you had implant reconstruction and you feel hardness in the breast area, it may be the result of capsular contracture. Capsular contracture occurs when a hard tissue capsule forms around the implant. It can be small and barely noticeable, or it can become very painful and distort the shape of the breast. Let your doctor know if you see or feel any of these symptoms. (http://www.breastcancer.org/treatment/surgery/reconstruction/screening)

Scaring:

Plain and simple, it could be a bit of scaring from the overall surgery, since there was scraping and disruption all over. 

Calcification Deposits:

Hard lumps under the skin, around the implant.  They can be mistaken for cysts/tumors.

Cysts:

I can't find clear/medical evidenced based information on this right now, but I read a few (ok, a lot) of forums where women find lumps and bumps all the time after mastectomy and reconstruction surgeries, most ending up to be benign cysts.  Yes, it's totally plausible to continue getting these, even after you've had a mastectomy.  Many of the women spoke of these being skin cysts, found in the remaining tissue after surgery.

* Update...nothing was wrong, it was just part of the implant. Everything is ok, but there's no such thing as overreaction when it comes to lumps with a family history.

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.

Thank You 2015, For Saving My Life

2015.

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

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

I could say so long 2015, bring on 2016.

I could say "why me?"

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

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

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

I did it for her.

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

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

I did it for her too.

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

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

And I did it for them.

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

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

Four Months Post-Op & October

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

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

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

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

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

October Can Be Great...

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

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

But So Can the Rest of the Year!

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

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

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.

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.

The Other Man

I write this post mainly for the male supporters in our lives.  The ones who would do anything for us.  The ones who we love more than anything.  The ones we've dedicated the rest of our lives to.  The ones who are standing by your side through your diagnosis, your treatment and your recovery.  The ones who kiss us good morning and kiss us goodnight.  The ones who may not understand this new relationship with the "other man" in our lives right now, but who will hopefully sympathize with what we're going through, and later understand what it was all about. My husband falls into this category.  We might talk endlessly about this other man, sing his praises and confer with other women about him, and I want to help you know why we do it.

Women, by nature, have basic needs that need to be met.  We need to feel safe and secure, we want to know we are loved, we want to nurture, we want to be appreciated, we want to feel like we can count on someone and we want our feelings to be understood (even if you don't really understand).  We form relationships and bonds with others when these needs are met.  Women hold relationships near and dear to their hearts.  We protect our relationships.  Its natural.  Its why you are number one in her life right now.  You met her needs.  So what's going on with this other man she's talking about so much?  She's made a new friend, that's all. 

                                                 

When a woman goes through something life-threatening or life-changing, the people immediately involved in that experience become forever bonded at the heart.  For example, her doctor.  He becomes a hero in her life.  This can be any doctor in her life.  Her therapist, her OBGYN, her surgeon...you name it.  They see her through some of the hardest times in her life such as dealing with trauma, welcoming new life into the world or helping her go through the struggles of conceiving, or even performing life-saving surgeries.  This is a person who listens, sympathizes and shows concern for what she's going through, just like you do.  We, as women, tend to open up and talk to these people in our lives.  We love to talk.  And part of a doctor's job is to listen.  We like that too; we value that.  So its completely natural that her doctor becomes an important person in her life with whom she connects and holds dear.

I recently read an article that I can't get out of my mind called, "It is OK for the doctor to cry."  I was so touched by the story as it was so refreshing to hear the other side of the doctor-patient relationship, from a doctor's perspective.  It's not often you hear this, nor find it.  It's actually quite rare in my experience.  Early on the author recounts a moment with one of her patients:

She begins to weep into her husband’s chest but somehow manages to thank me for taking care of her for the past week and being “one of her nicest doctors.”  She even stands up to hug me.  I leave the room really quickly with tears forming and sneak into the bathroom as I begin to cry.

This doctor is humanized.  The doctor met the emotional needs of her patient, and a bond was formed.  The articles goes on to describe the compassion a doctor forms for her patient, and how she sees her patient as something more than a medical file number.  Her patients are mothers, fathers, sisters, brothers and more.  This is how I felt.  The author ends by saying:

Yes, we should distance ourselves emotionally if it affects our medical decision-making but when it boils down to patient care, feeling for a patient and his or her family makes medicine humanistic and real.

My journey was all about forming relationships.  I "read" people quite quickly, and I make decisions based on connections and my heart.  I know when I don't feel good about a person, or when we're not a good fit.  I made judgements based on comments doctors made in social media, on reviews left by other patients, by how the front office handled my calls requesting information and by how I connected with the doctor (IF I was allowed to actually talk to the doctor).  I needed what the article said, "make medicine humanistic and real."  If my needs weren't met, you weren't going to touch me with a knife.  My husband knew I had made my choice in surgeons a long time before we actually Skyped with my surgeon, as I had a good gut feeling from the PRMA patient liaison, Courtney, with whom I had been working. I couldn't stop talking about PRMA and Courtney.  Everything was, "Courtney said...", or "Courtney's so nice" or "Courtney is probably so sick of me...".  

 My needs, however, were eventually met with my chosen surgeon, Dr. Chrysopoulo.  He was real.  He IS real.  He provided assurance early on that built my trust. Throughout the process, he made comments that personalized the experience like, "if it was my wife...," or "you're the love of his [my husband] life and mother of his kids. Doesn't matter how positive you are...all bets are off [referring to my husband's biggest fear being that they'd find cancer when operating, but hiding it from me till all was said and done]."  My doctor cared about us as a family.  He took the time to ask my husband how he was really doing, husband to husband, after the surgery.  I kept telling my surgeon that I trusted him because he had taken the time to build the trust.  During my in-person consultation, he'd ask me if I wanted A or B, and I'd reply telling him I trusted his opinion and left him with the ultimate decision.  He had been welcomed into the 'circle of trust.'  He humanized the experience, just as the doctor said in the article.  In return, my husband listened to a lot of, "but Dr. C said.." or "according to Dr. C...".  I get it.  I talked a lot about my doctor, still do.  And Denise...oh Denise.  She's my nurse, and she's wonderful.  Up until my last day in the USA, I kept referring to Denise like she was my BFF and my husband would laugh.  She captured my heart too.

                                               

In a recent article, I spoke about the power of social media.  My doctor is wonderfully involved in it.  It's fun to see him interacting with people, patients, strangers and other doctors.  It's more fun to see how many other women are out there speaking highly of him, you're proud that you chose someone so revered.  I've become friends with some of his patients, like Terri, who also formed a relationship with him.  She spreads the word about how wonderful he is as well, like a personal cheerleader.  We love what he's done for us, plain and simple.  He's a doctor, he's brilliant at what he does and he cares for his patients.  We've gone through a very emotional time together, so of course we're all connected by that 'something common' between us.  I was talking to a friend from home this morning about my experience and how I was going to write this blog post.  She replied with, "it is such a unique relationship and situation." She totally understood and felt that I should write this to help other men understand what is happening.

My husband gets it now.  He said today, "I totally get (and support) the bond that you have. He essentially saved your life, and those words went through my mind weeks ago."  I know it must be hard to have your significant other speak so highly of someone else so often.  I don't think I'd like my husband coming home from his appointments speaking about his amazing female doctor and how supported he feels by her!  Not fair of me, I know.  But in the end, we're all friends now.  We can all chat like we've known each other forever, and we're all connected via Twitter and Facebook as well.  In the end, just consider your significant other's doctor, with whom you've all shared a major life experience with, as another friend to add to your circle.  At least that's my hope.  I hope you have a doctor who humanizes your experience.  However, I don't think my husband and I will ever be able to call him by his first name...he'll always be Dr. C to us.