7.30.2015

PRMA Testimonial

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


Testimony 

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

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


Contact us via Twitter too! 

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

7.26.2015

Tests, Risks and Confusion Prior to Oophorectomy

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

Pre-Surgery Baseline Testing


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

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


Bone Density, Osteoarthritis and Cardiac Disease


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

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

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

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

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

Risks


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


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

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

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


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


Insurance


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


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

7.22.2015

Social Media is Bridging Gaps, Helping Patients Make Decisions

I get asked, a lot, about why I'm so overly open on a very public blog.  People in my life wonder why I'd share intimate information with the world, with people I know nothing about.  I write candidly about the ups and downs of my recovery, the painful childhood memories of dealing with my mom and cancer and even share personal photos.  My answer?  Because someone out there is going to feel as lost as I did going through this experience, and if I can tell the story in real-time, as I'm going through each step, its bound to help someone.  Social media can be a gift, if used the right way.  It can not only be a tool to get information out to others with like interests or sharing your own personal and professional knowledge, it can be used to help people cope with whatever journey he/she is going through, seeking answers they just can't find in medical journals.

Case and point.  Last night I received the most lovely direct message via Twitter which assured me, for the first time in my seven months of blogging, that I'm doing this for the right reasons.

I don't mind putting myself out there...reality is, we're in the information technology age, and I might as well use it in a productive way, not wasting my time.  I'm only one small drop in the ocean of Twitter.  You'd be amazed to see how many patients are online seeking comfort, advice and knowledge from other patients and physicians.  For someone looking to have their hand held through a journey like mine, implant reconstruction after a BRCA diagnosis, I'm here.  If she is a mother of children wondering how to tell them of her BRCA diagnosis or upcoming surgery, I've written about that.  If they just can't make the decision between implant or DIEP, they can read my take on my surgery and then hop on over to my friend @6state, DIEP extraordinaire.  If she's looking for a closed and private support group, she can seek out @NickiDurlester.  If she wants to know how I chose my surgeon, @mchrysopoulo, and why I'd recommend him to anyone, even my own children, I've explained it plenty.  I'm putting it all out there because someone will have those questions, they will seek them out, and it's not their primary healthcare physician they turn to first...it's the Internet.  But its not just us patients advocating online.



As a result of my recent journey, I've been very fortunate to get involved with some pretty amazing doctors on Twitter; doctors who are putting themselves out in the public eye, hoping to share knowledge with not only other physicians, but patients too.  They are providing a wealth of information regarding breast reconstruction, both from the scientific and the patient points of view.  A bridge is forming, connecting the wide gap between the doctor and patient.  We're all learning from each other, supporting each other and trying to change how medical decisions are made.  We're seeing a more socially responsible healthcare system.  Patients are feeling more supported, heard.  The same patients who read my blog or tweet with me, are also tweeting with these doctors and asking questions.

This movement, gaining momentum over the last couple years, is called Shared Decision Making (#shareddecisionmaking.)  

Shared decision making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient's values and preferences. http://bit.ly/1qKkl8S
Doctors being on social media platforms, ranging from Twitter and Facebook to Instagram and Pinterest, are providing patients with many different points of view.  They are sharing research, data, articles, photos, charts, live tweets from conferences...and patients are soaking it up.  We want to be well informed before walking into our own doctor's office.  We want to have a say, ask questions, get opinions.  And the beauty is, doctors are getting it.  They are listening, they are having conversations and they are aware that the person sitting in the chair in front of them might as well be their daughter, mother or wife.  A personal interest in patients is happening.  Doctors are beginning to feel the pulse of patients around the world, via social media.  Patients are getting a lens into the medical world.  It's a win-win. 

I hope that as time goes on, this sharing of knowledge via social platforms gains momentum and trust.  There are skeptics out there, people who feel healthcare discussions don't belong on social media streams, let alone their own doctor.  I'm here to say I disagree.  If you have the right doctor, if you've done your due diligence, you've hopefully found a doctor who understands patient privacy and remains professional online at all times.  The skeptics will hopefully learn to trust this emerging online healthcare system and see all the benefits outweigh the negatives...if any.  If you're ready to join us, we welcome you with open arms.  

Hashtags to follow: #shareddecisionmaking #breastreconstruction #plasticsurgery #brca #SoMe

Twitter users to follow to get you started@mchrysopoulo @diepflapbreast @6state @olivierbranford @danielzliu @lguzzardim @dr_samuellin @brcaresponder  @karenbrcamtl @brcainfo @pisano_dr @chetnastala @droscarochoa


7.19.2015

Traveling Long Distances for Breast Reconstruction




For five years now, I've been a travel writer, offering tips and recounting adventures for families.  My family and I have been lucky enough to travel to some of the most amazing parts of the world, each trip educating myself and my readers on how to do it well...or at least with fewer headaches.  I've learned how to pack a family of five into two suitcases for a twelve-day winter trip to Germany and France, as well as how to pack that same family into one bag for a week-long beach vacation in Bali.  I've learned how to choose family-friendly hotels and how to use family-friendly houses through Airbnb.  I've taken note of what really gets used on a trip and what ends up staying in the suitcase.  What I wasn't prepared for was the amount of information regarding packing for a surgery overseas.

Overseas Medical Travel

When I scheduled my surgery date with PRMA and Dr. Chrysopoulo, I was five months out from leaving Singapore and arriving in Texas.  This gave me plenty of time to research other lists created by previous surgery goers, and there are a lot.  My mind was getting overwhelmed as I tried cross-referencing based on distances traveled, items packed and types of surgeries.  What I began to notice was how fortunate many of these women were to have surgery in their home towns or within driving distance, affording them the benefit of staying at home and not displacing their entire family for the two or more weeks of recovery needed.  I know there were women out there who traveled great distances to get surgery, but I couldn't find anything that told me what I needed to know for a 9K mile journey.  My initial stages of inquiry lead me to writing this piece in May, The Challenges of Traveling Long Distance for Medical Care, for World Ovarian Cancer Day.  I could at least get people going in the right direction with the initial planning and logistics of traveling overseas.  I discussed insurance, flights and overall preparation for the long flight.

My next quest was in narrowing down the expansive packing lists.  Taking a family of five overseas, for any amount of time, isn't exactly easy.  When you include medical necessities, you begin to worry about abusing your baggage allowance.  If there's one thing I've learned, sometimes its worth buying some things upon arrival instead of lugging them with you.  Keeping this in mind, along with the fact that I wouldn't be allowed to lift any of it after surgery, we kept things realistic.  You'll of course pack your normal items such as shoes, toiletries, underwear, etc.  Everything else is just extras.  Here's what I really, truly needed during the recovery, whether I packed it or not.


Packing List

  • Tank tops (cotton, larger than normal size) and men's cotton Hane's t-shirts, cut up the front to wear under the surgical bra.  This keeps the bra from rubbing against your incisions and skin overall. I wore these for as long as I was in the surgical bra, which was just about two and a half weeks.
  • Throat lozenges...after five hours with a breathing tube, your throat hurts for the first couple of days.  However, my nurses quickly learned I'd eat the heck out of Jello, so that would have sufficed.  I did NOT need to pack these...buy them on arrival.
  • Button front shirts, dresses, etc for the ease of getting dressed after surgery (at least until you're approved to begin lifting your arms above your head.)  I was thankful for the latest fashion trend, the long button up shirt dresses.  They were baggy enough to hide my drains inside and still looked good.
  • Button-front pjs during recovery.
  • Face wipes.  I was tired that first week after surgery.  I did not want to wash my face at night, nor did it feel good leaning over the sink and making the continual scrubbing motion.  I did NOT need to buy these, but I had the brand I liked and didn't want to fuss about trying to find them on arrival.
  • Sleeping mask.  A NICE one.  I'm not one to have ever owned one, but this was the time I was going to get one and use it.  I was so thankful too.  I was dealing with jet lag, medications, and crazy hours with nurses in the hospital.  Being able to block out any light and keep my eyes closed was a beautiful thing.
  • Shower pockets.  These are neoprene and I wore them 24/7 until I got my drains out.  I had two pair so that one was always dry for after the shower.  You can find other ways of dealing with your drains, but this was just so easy and didn't involve poking holes in my clothes with safety pins.

  • Cell phone, computer and converters.  I have a slight addiction to social media, in case you didn't notice.  I also wanted to keep my loved ones updated post-surgery.  Having a cell phone allowed me to do quick chats in the hospital and the computer allowed me to begin blogging as soon as I left the hospital, as well as to watch TV shows and movies.  Just don't forget your chargers and converters if you're traveling overseas!
  • Pillows.  No, I didn't bring pillows nor buy pillows, but I made sure I had plenty of pillows for reclining and elevating my arms.  I went as far as to ask the Airbnb we stayed in if they had lots of pillows, and then requested extra pillows from hotels.  You'll want them.  Even up to this day, I still have extra pillows on my bed as I'm still required to lie on my back.
  • Pill cutter.  If you're like me, taking a whole dose of medication didn't fly.  The pill cutter and I were friends.  You can find one at any pharmacy, just make sure you have one.
  • Blanket.  You might have another comfort item in mind, but for me, it was a blanket my mother-in-law surprised me with.  It was so lovely to have that with me in the hospital and up to now.  Pack that something that is going to make you smile and feel warm and cozy inside when you see it.
  • Support!  No, you can't technically pack them, but if you are traveling for the surgery with family, make sure you have someone to help 24/7 that first week.  My mother in law was instrumental in watching the kids and allowing my husband to stay with me in the hospital, then helping take pressure off my husband once home so that he could take care of me.
Everything else that were on lists I saw were "nice to haves" but not necessary.  I brought magazines for the first few days that I couldn't even get through as I'd fall asleep and I brought seasons of Modern Family and Big Bang Theory to watch in the hospital, but I slept through those too.  All in all, think comfortable and easy access.  Keep those in mind, and you'll be good to go.  You don't need to pack the kitchen sink.  

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.



7.16.2015

What's That Tingling In My Toe?

So, I'll admit it.  Sometimes I feel weird things in my body and swear something is wrong with me.   I might be guilty of going to WebMD every so often just to check things out.  But, I keep it to myself so as not to be the crazy one, or the hypochondriac. I won't go into detail on these things I've researched, but there's one that's quite interesting, happening post surgery, that I had to ask.

"Dr. C, I have to ask you the strangest question I think you'll ever get post surgery. I've waited 5 weeks to see if it goes away...lol."  Clearly you can see that I'm setting up my doctor to be prepared for any and everything I might ask.  Basically, I was justifying my asking the question and making myself feel better about it.

I continue.  "Has anyone ever said that they have nerve tingling on the top of their foot leading to their second toe after surgery? Both feet?"  See, I told you, weird.  

For the past five weeks, I've had the strangest sensations in the tops of my feet which lead to my second toe on each foot.  I would move my feet, flexing, turning, whatever I could do to try and shake it off.  I thought maybe it was just in my head.  Maybe its from all the bed rest.  Maybe I just needed a massage.  But what if I said something and everyone thought I was crazy?  What if I was all the sudden the hypochondriac?  Who has tingling in their feet as a result of surgery?

Who?  Me!  I'm NOT crazy!

Turns out I always have to do things not-so-by-the-book.  I got seroma after surgery which needed to be aspirated, and now I have tingling toes. Turns out, this is from the compression socks I wore during surgery.  I told you they were super tight, the nurses even had a fancy way of using a plastic bag to slip them up my leg more easily.  Well, there's a nerve called the Peroneal Nerve than runs down the leg...then into the second toe which is called the Deep Peroneal Nerve.  My nerves got bruised a bit from the top of the compression socks.  

After researching a bit further, I found some stories about numbness and tingling from people who fly with compression socks, but it usually resolves itself in a few days or weeks.  I have flying compression socks, they're nothing like surgical socks.  So I now get why my poor second toes tingle right now and for so long.  I'm told this will resolve itself over time.  For now, just call me tingly toes.