Long Haul Travel After Mastectomy

I've arrived back in Singapore, three weeks and four days after my mastectomy.  It was a very long, 25+ hours of travel, but I'm pleased to say that it wasn't too bad on my body (as of writing this).  My biggest fear of all, (yes, here's where you get to see how my irrational thoughts get the best of me) was that my implants would somehow be affected by the altitude.  I don't know if I actually thought they would self-implode or cause me pain from some sort of abnormal swelling, but I had the worst of the worst thoughts going through my mind.  At any rate, I have a few pointers if you are about to make a long haul journey for your reconstruction surgery that I thought you'd like to know.

1.  Get a medical release for flying and fill out the airline's medical form.  We flew Emirates, and I was alerted to the fact that they have an online medical form that I could download and fill out, along with my doctor's instructions and signature.  This is important for two reasons.  A)  If you show up to the flight looking unfit for air travel/requesting special accommodation/explaining a surgery, they will question you and demand a doctor release before letting you fly.  B)  They are often really good at trying to accommodate you throughout your travels, whether it be a class upgrade to fully recline, wheelchair service or general extra care throughout your flight.  I was given an upgrade to Business Class, however, it was more important for me to be with my husband and family, so I stayed in Economy.  This flight was 100% full, so they couldn't give me a couple extra economy seats to stretch out either.  But it all worked out fine.

2.  Wear a good bra.  Now isn't the time to try a cute bra for the first time.  You want to make sure you are wearing a supportive bra during the journey, one that makes you feel secure and well supported.  I packed my surgical compression bra in my carry on, just in case I needed it, but I initially went with wearing one of the Genie bras I had purchased and already tried sleeping in a few night previous.  I'm glad I had that support while walking through the airports and for sitting upright for extended hours.  I never needed the compression bra.

This is the Genie Zip.

3.  Make sure you have compression socks.  I wanted to take every precaution I could to make sure nothing went wrong on this flight, after all I had been through.  I purchased compression socks at the airport (there was NO WAY I was getting the hospital ones back on).  If people get clots without having just had surgery, I figured I was at a slightly higher risk and so I sexied myself up with some sexy, long, black...compression socks.

4.  The window seat was my friend for the first time.  I never sit in the window seat because then I'm wedged in and have to bother strangers to get up and down.  I'm and aisle girl.  However, the window was my friend on this trip (plus, the other passengers next to me were my kids.)  You have that extra bit of room to lean.  I took a blanket and pillow and formed a cozy padded area against the window which allowed me support and zero disturbance (nor the chance of me nodding off on someone's shoulder.)  I tried the aisle seat, and it just didn't work as it didn't give me any allowance for leaning and getting comfortable.

5.  Take your medications and get clearance!  Take your meds on the flight!  I took 1/2 a Xanax and 1/2 a muscle relaxer and I was pleasantly surprised at how well I slept for hours on end.  I'd wake up, walk, eat and go back to sleep.  When it was time, I'd reload on the medication.  I never had any pain during the flights.  NOTE: The one thing I did notice was that the outer sides of my breasts were very tender by the time we arrived home, like the muscles had been stretched from trying to rest in various positions.  Listen to your body and support it as much as possible with extra pillows and blankets.  As for clearance,  I live in a country where the importation of illegal drugs can mean a death sentence.  Make sure you have what you need from your country to bring your medications back in.  I had to get a license which meant applying for it well in advance of the trip. 

6.  Take lots of walks.  You might have compression socks on, but make sure you get up and walk as well.  Make an excuse to go to the bathroom or grab a cup of water (stay hydrated!), or just be the person who gets up and takes a stroll around the cabin, but just do it!  

7.  Stay hydrated.  I can't wait for the flight crew to come and fill my measly single serving cup over an over again.  Luckily, I had an awesome attendant who saw my nearly empty full size water bottle, and filled it up for me.  Keep yourself well hydrated.  You've just had surgery, you're flying and you're taking medications.  You've got three whammies telling you to stay hydrated.  So do it.

8.  Don't lift too much!  I'm still at 'nothing over 10 lbs' weight limit on what I can carry.  You'd be surprised at how quickly your carry on can become 10 lbs.  Make sure you're not going to stress yourself out with an over packed bag, or else make sure you have someone to help you.

I hope these tips will help you.  I'm sure some of you have more tips to contribute as well!  Each person will be different, and each type of surgery will require different things.  I would imagine someone who had a DIEP surgery will have other accommodations to make for their tummy area.  At any rate, make sure you're OK to fly on a long haul, give yourself enough time.  And no, my implants did not self-implode or spontaneously combust.  

UPDATE: As it has now been nine hours since our flight, I have noticed increased swelling in my legs and my breasts are very tender and sore.  I imagine my body is going through some fluid changes after the long flights.  Keep aware of your body after your long haul and note changes.  Alert your doctor if anything seems abnormal.

The Power of Social Media

Who would have thought, ten years ago when I learned of my BRCA1 results, that social media would have ever played a part in my treatment plan.  Ten years ago, I had just started working for an online University, and I thought that was crazy enough!  But to think that I'd find my doctor, seek referrals, "meet" patients and even plan my surgery via social media channels...the mind boggles.

Today is Social Media Day 2015 (#socialmediaday2015), so I felt it appropriate to take a minute to reflect on my social media journey which has lead me to sitting here in Texas.  Because none of this would have come to fruition without it.  Let's face it, I was living in Dubai for the critical part of finding my doctor, which ended up being in Texas, and living in Singapore when dealing with insurance, finding lodging and planning the rest of the trip.  Medical tourism is a hot topic, and a lot of people flock to Asia for the best of the best...but they're flocking for cosmetic surgery, not reconstructive surgery, so referrals I was getting within the region weren't satisfying my type A needs for perfection.

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

So, back in 2013, I came across this little group called Beyond the Pink Moon, to which I was invited by a friend of a friend, Lori, whom I had never met, but had becomes friends with on Facebook.  There I was, plopped into an online community with admin and author, Nicki Durlester and previvor friend, Melissa Voight; a forum for discussion regarding breast and ovarian cancer, as well as genetic mutations increasing hereditary cancer risk, including BRCA1 and 2.  I laid back for a moment, reading all these stories, some breaking my heart, some bringing me tears of joy.  This group seemed close knit, they all trusted each other and shared anything and everything.  Soon, I was ready to ask some questions.  My first interaction was on November 5, 2013; it was my introduction:

Hello! Brand new here. I'm 37, mother to 3 kids and wife. I'm currently an international teacher living overseas. I tested positive for BRCA1 in 2005, and I'm now ready for surgery. I'll be flying to the States for it next July. I'm now going through the motions of finding a doctor, calling insurance and figuring it all out from overseas, which is hard! Hoping for a direct to implant procedure. If anyone has experience with Cigna insurance, please do tell! Thanks!

Well, it was a lady named Laura R. who immediately peeked my interest with her reply:

If you're looking for a doctor, PRMA in San Antonio is great. They take all insurances and help with travel. I just heard they have virtual consults too. 

Ding!  Virtual consult.  I was oversees.  I needed someone who could help me through the Internet, and she recommended the four letters that I couldn't ever get out of my head...PRMA.  I must have moved quickly (type A) as the next day, I replied to another 'Lovely' with: 

I'm in your EXACT  position (name hidden)! I just joined the group yesterday. I'm older, turning 37 this month, diagnosed BRCA1+ in 2005. I'm filling out my virtual consult form for Dr. C right now. Hoping I'm a candidate for one step, direct to implant reconstruction! I'll have to wait 'till July as I'm living overseas. Good luck!

Now, how did I know to ask for Dr. C?  This is an interesting one.  I had many of the ladies PM me, all talking about Dr. Chrysopoulo.  I then met dear Wendy on November 6th, where she gave me what I needed to hear, " I traveled a little over 8 hours. I had a one step and was there a little less than a week. We drove."  Ding again!  Recovery with this procedure would be better than anticipated given my time constraint.  Wendy and I continued talking, and still do to this day.  All this happened within TWO DAYS.  Are you seeing that?  Discussions, relationships and referrals, all via a Facebook group.

Well, we all know what happened next.  Due to being relocated, my surgery never happened in July of 2014.  My next post on Beyond the Pink Moon happened on January 11th, 2015, the day I had been going crazy, starting over, trying to figure out how to have surgery overseas again, and who to pick, knowing Dr. C was still in my mind, for my surgeon.  I had all these referrals from ladies for California doctors, but nothing was working out.  The Pink Moon Lovelies were so helpful and provided me with so much information.  They felt my pain of trying to plan an overseas surgery, without being seen in office first.  I had my friend in the US calling these doctors offices for me (time zone issues) and asking all the initial questions for me.  It ended all the same, in office consult before they could discuss surgery.  In the back of my mind, I kept going back to Wendy and Dr. C.  It was then that Laura R's voice popped back into my life with...

Heather, PRMA is fabulous and one of the best! Dr. C is a top notch doctor and you would be in the best hands. Dr. C did my DIEP flap and he did one-step on Wendy.  Dr. C is a perfectionist. He's an exceptional doctor. And so caring!  There's a bunch of us with personal experience with Dr. C so rest assured you're in excellent hands with him. 

Another Lovely wrote:

 I haven't had PBM yet, but when I do, it will be Dr C at PRMA. I have flown all over the United Stated consulting with 5 different plastic surgeons. I liked Dr. C the best of every one. He was incredibly compassionate and his results look so great. I think you'd be in fantastic hands.

That was the day I knew, I knew Dr. C was my doctor and I'd be turning my life over to him.  I couldn't believe the amount of information I received from an online forum.  Patient referrals mean so much to me and so much to many.  Just knowing so many women were so happy with their outcome spoke volumes.  I had my Skype chat with Dr. C in February and all was good.  It was perfect.  It would be him.  Now, my addiction to social media means I ask a lot of questions, I second guess, I research, I freak out a bit, and then I go back to calm.  Dr. C caught me in the middle of one of these cycles when I was second guessing things.  I said I was listening too much to other people, Nicki told me to put my earplugs in to which I said "I will" and "I know my surgeon will make me look lovely."  Well, I didn't know Dr. C was on the forum.  I got the reply, "Yes I will Heather."  LOL!  My doctor, involved in social media.  

Well, over time, I met many, many more BRCA friends via Beyond the Pink Moon and Twitter, like Terri, Tobey, Lisa, Karen, Georgia, Amy and Brandi.  There's a huge community of advocates out there sharing their stories for people like me who had no clue where to begin.  There are doctors who are willing to chat online, add to conversations patients are having and help educate.  It's amazing where social media has come.  I'm so glad that forward thinking PRMA is getting ahead of the game, paying attention to what patients want, what we need, really.  They are getting involved, listening and learning, and putting it to use. 

Happy Social Media Day 2015

The Storm Before The Calm

"You've been waiting for this for ten years, you're ready."  This is what my husband keeps telling me in my moments of panic.  It's true, I've been waiting for this for ten years, but that doesn't mean I've been mentally preparing myself for ten years.  Thank goodness I have him by my side to reassure me every step of the way.  Here we are, we've finally made it to San Antonio after what has been a chaotic and long journey over the past few weeks.  In my case, it seems like there's been a storm before the calm instead of the calm before the storm.

A month ago, I began the process of packing of my classroom, slowly, so as not to worry my children nor cause too much disruption. I was meeting deadlines at work sooner than everyone else around me because I had to be that much further ahead and prepared for leaving my school two weeks prior to the end of the school year.  However, nothing prepared me for the actual last day when I said goodbye to them.  How strange to leave your students early, turning them over to a substitute who doesn't know their nicknames like Quynharoo, Fergalicious, Maya Papaya and Oraegano.  They gave me a book before I left, full of things they'll remember...I love it.

                                       

During this month, I was also dealing with the medical side of things, preparing everything I could before we left Singapore.  There were many last minute issues to deal with, such as requesting permission from the Singapore Health Authority to bring back my controlled drug prescriptions and getting blood tests and an EKG days before departing.  Thank goodness Singapore is incredibly efficient, as I had my license to import my medications within one working day and I had all my medical tests completed within 8 hrs of submitting my request.

In addition to all of this, because I can't seem to live life without a variety of things on my plate, I was packing my family for a month in the USA, preparing our Singapore home for company to enjoy while we were gone and making sure I had all the recovery items I'd need, or had been suggested, for after surgery.  I've said over and over how thankful I am that I've been so busy, because its allowed me to keep my mind occupied instead of worrying about things to come.

So here we are.  We traveled seven hours to Dubai, "enjoyed" an eight hour layover and then hunkered down for the fifteen hour flight to Houston.  Within 24 hrs, we had made our way to San Antonio and I met my doctor, Dr. Chrysopoulo, last night.  Everything is coming together after so many years of anticipation and recent months of planning.  I'm finding my peace with it all and looking forward to experiencing the calm that will come with knowing I've done as much as I can to prevent myself from experiencing breast cancer.