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.  

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.

5 1/2 Weeks

5 ½ weeks till surgery?  Nope.

5 ½ weeks recovery time from surgery?  Nope.

5 ½ is what it took to get insurance approval for a prophylactic double mastectomy with immediate reconstruction.  I read a lot of blogs, I ask a lot of questions, but never in my reading did I learn how long it could take to get insurance approval.  No one seemed to talk about the window of time between finding a doctor and getting a surgery date.  Don’t get me wrong, I'm so thankful for the opportunity to even have insurance to proceed with this surgery in the first place, but I just wasn't prepared for how my psyche would be affected by the wait time.  Waiting for the email stating, "you're approved" drove me insane.  

Naïvely, I thought my virtual consult with my doctor in February would mean I had a date on the calendar for June, in pen, and insurance would naturally say “Yes!” immediately.  My emotions were flying all over the place while I waited.  Remember, I started this current journey in November, when I had an abnormal mammogram for the first time.  Since November, I have been in overdrive, wanting everything to be planned and set in stone as quickly as possible.  I like plans.  That’s my personality.  You want something done?  I do it right away.  You want something planned; I’ll get it planned quickly and efficiently.  But everything was moving so much slower than I ever anticipated, I wasn't the one in control and my mind didn’t know how to cope with not being in control.

Once again, however, I give thanks to my choice in PRMA.  Every time I wrote in to ask if insurance had yet approved, they replied in the best way they could, “you’ll be the first to know.”  I believed them, but I was also anxious.  I wrote a lot.  I knew in my mind that they really would tell me straight away as soon as they had news, but I needed to ask just feel somewhat proactive.  I can’t imagine what it’s like to be the sounding board for so many women all counting on you to provide the answers they can’t receive on their own.  Women, like me, who are so consumed with the idea of saving their lives that nothing else seems to matter.  

I noticed I wasn't as focused and on top of things as normal.  My work was becoming affected as my emotions were on a roller coaster.  I was on the verge of tears for weeks, as I had all the “what ifs” rolling through my mind.  “What if they say no…what will I do?”  That’s a really hard one to deal with.  I had taken the gigantic leap to get genetically tested, I found out I’m positive, I'd done my due diligence to finally find the perfect doctor, I'd requested weeks off work and now, after all that, what if I can’t do anything about it.  What if insurance says no.

I also had a lot to plan and set in place when it came to my family.  We live overseas and are flying to the States for all of this to happen.  My husband and I both work full time.  We have three children and a dog.  Jobs, flights, dog care, childcare, hotels, etc all neded to be planned and I couldn't do any of it until I had dates.  I felt like I was keeping everyone hanging as I had no answers.

Luckily, after 5 ½ weeks of agonizing waiting, I finally received the news that I was approved for the surgery that I set out to get, really, back in 2005.  I can’t begin to express the feeling that came over my body at the moment I received the news and my husband high-fived me.  He was on the phone with insurance confirming everything and gave me that smile that let me know everything was going to be ok.  I knew I was on my way to healing.

I think I would have been a little better off had I known that insurance approval could take this long.  Had I known from the beginning of my surgical search, I wouldn't have set false expectations in my timeline.  This is why I felt this journal entry was important, hoping someone else going through this could be informed about the insurance wait.

Questions I often get from others wanting to go down my path involve insurance and the steps I took.  Based on my experience and what I’ve been through, this is what I am able to come up with to hopefully shed a little light on insurance and BRCA.

Genetic Testing:

I'd heard that the cost of getting a BRCA genetic test could range in the thousands of dollars, dollars I didn’t have. I was, however, delighted to learn that my test could be cheaper if I could find a first-degree relative who tested positive.  Since my mother was no longer alive, my grandmother, a breast cancer survivor, was able to get her insurance to cover the genetic test, and her positive result meant that my test came out somewhere between $300-$500.  I believe that if this isn’t an option, out of pocket costs really are quite high, into the thousands.

Mammograms/MRI/Ultrasounds:

Somewhere during the time of my genetic test, having babies and putting off mammograms for a while, a law was passed that meant I couldn’t be denied insurance and be labeled a pre-existing condition.  I still don’t fully understand how this works, but I do know that I’ve had several different insurance policies since 2005 and we’ve never had a problem being covered for anything, in States and overseas.  When it was time for me to begin getting the routine mammograms, everything was covered because I was BRCA+ (high risk.)  Even now, all of my doctors write the orders for the scans as “BRCA+ high family risk.”

          Here’s what I found to best explain it all-

“Under the Affordable Care Act, most health plans must make genetic counseling and testing available without any out-of-pocket cost to women whose family history indicates they have a higher-than-average risk of mutations in the BRCA1 or BRCA2 genes. The federal health law's prevention coverage requirements are based on recommendations by the U.S. Preventive Services Task Force. It's the only preventive genetic test the organization endorses.” - http://www.npr.org/blogs/health/2013/12/09/249782554/dont-count-on-insurance-to-pay-for-genetic-tests

By Careilly5801 (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)], via Wikimedia Commons

Other Appointments:

There's a lot of appointments involved in all of this.  Be well informed ahead of time so that you can prepare of how this might financially impact you.  It wasn’t just the genetics counselor appointment in the very beginning that I had, it was then the referral to the oncologist to talk about surgical options. It was then the appointments with the gynecologist to do ultrasounds on my ovaries (much like my yearly mammograms for my breasts).  There's the blood panels taken to check my indicators for ovarian cancer, the numerous MRIs and mammograms and then the plastic surgery consultations.  Again, my insurance has been there for me each and every time, covering the costs…perhaps only a copay with some of the plans I was on at the time.

I'm hoping that every woman gets the chance to have the BRCA genetic test IF she wants it.  As I mentioned in my first post, getting the test was going to quite possibly change my life forever and I had to live with the results.  I had to prepare myself for what my options would be and what I'd be capable of doing.  I have many people tell me, since coming public, that they aren't ready for the test and don't know if they ever will be.  That's ok.  I'm still here for them.  It's all so very personal and now one can make the choice for another.