Mastectomy: A Bump in the Road

My mastectomy surgery is 14 days from today, and I had a great day today.  Really, I did.  I’m making sure I exercise by walking each day.  Today I walked faster than I have in the past several weeks and I walked further.  I spent almost an hour out walking!

Mastectomy ready
Out for a walk

curtainsMy mastectomy home: “new” curtains

I had lunch with some friends today and spent the afternoon looking for an affordable solution to my curtain issue.  My bedroom has a set of curtains that, because of the way we had to hang the curtain rod, cannot close over the whole set of windows.  They were hung for decoration vs. function.  Well, now that I’ll be sleeping in a chair right next to those windows, I wanted to make sure I’d have an easier time napping.  Curtains are expensive, though, people!  So, I had to get creative.  I went to Home Goods and ended up buying a set of panels for my daughter’s room for $25 so I could steal her curtains for my room!  The price of those curtains at Home Goods was the price for a single curtain panel at Target.  Anyway, the curtain situation is much improved in my room now.  Granted, it’s not that great aesthetically, but it will work for the time being.

Pretty successful day, right?  well, it was…

…until I opened the mail.  Let’s just say that my insurance company and I have a bit of a conflict.  They denied coverage of my reconstructive surgery.  I don’t get how this happens.  They approved my hysterectomy and oophorectomy.  They have in their code that “Aetna considers prophylactic mastectomy medically necessary for reduction of risk of breast cancer in any of the following categories of high-risk women”…[including] “Women who possess BRCA1 or BRCA2 mutations confirmed by molecular susceptibility testing.”  Therefore, I should also fit the following criteria that, “Aetna considers reconstructive breast surgery medically necessary after a medically necessary mastectomy.”

envelope
image by Blake Burkhart on Flickr

What I find annoying about this is not the fact that I won’t be covered because, clearly I will.  The annoying part is that I will have to use valuable time tomorrow on the phone.  I need to follow up with my plastic surgeon to make sure they resubmit for the correct billing because Aetna rejected a code they should have covered.   In addition, I’ll be calling the insurance company first thing in the morning to see what exactly they have qualms about.  I have limited healthy time left, people.  My two weeks remaining until this mastectomy is like gold to me.  I don’t want to waste it on the phone working out something that shouldn’t be an issue!  I should be doing all the things I love to do and not feeling guilty about any of it.  Working out insurance coverage was not on my to do list.

Prophylatic mastectomy and insurance

What can you take away from this?  Call your insurance company when you start looking into docs and procedures.  I did this, but I didn’t do one crucial step–ask for the codes the doctors need to use when filing for these procedures to guarantee they will be covered under your plan.  You must be an informed consumer.  These insurance Consumer Policy Bulletins aren’t easy to find.  You need to know what to look for.  And, the codes you need are all the way hidden at the bottom under all of the medical research  (at least they are in Aetna’s case).  I still haven’t gotten the coverage for my genetic testing worked out but we haven’t been billed again, either.  Someone dropped the ball on that one when I asked for the genetics people to resubmit and gave them the codes they should use.  I never heard back.  It’s been months.  If you need to do a search to help with your insurance process, turn to Google.  Use the name of your insurance company + Consumer Policy Bulletin + either “breast reconstructive surgery” or “Prophylactic mastectomy.”  I’m sure you’ll have something turn up.

Well, this has turned into a very long post; if you’ve read this far I’m delighted.  I am not going to let this little blip get me down.  I’ll make sure my surgeries happen by being the proactive person that I am!  And, I’ll remember that I had quite a good day so there’s no reason someone else’s stupid mistake should sour my mood any longer.  It’s time I remember my mantra to “see life half full.”

 

Mastectomy: 16 Days Away

The reality of my approaching mastectomy is beginning to set in.  When I was diagnosed BRCA2+ I immediately began to research what to expect in terms of my surgeries.  Unlike many other women who are diagnosed with the condition, I had already determined that surgery was the only path for me.  So in this age of internet, I began to Google everything about types of mastectomy and the healing process. I searched for blogs from individuals because I need to know what the process was really like, and I didn’t trust the impersonal descriptions I could find on the various cancer-group websites.

Finding other PREVIV0RS

What I discovered is this: there isn’t a whole lot out there for us previvors.  What information I did find was limited but so much more valuable for its description of what recovery is like on a daily basis.

One of my favorite blogs comes from Christina over at Carolina Charm.  She has a fantastic list of  ideas to consider when planning for your mastectomy.  Also putting herself out there is Diana over at Previving and Thriving.   Both of these women amaze me with their courage and openness.  They shared their stories as a way to help other women, and I am so grateful that they made the choice!  I’ve read and re-read their words as the date of my surgery has drawn closer, and their advice has helped me to feel better prepared for something for which you can never be truly ready.

Setting up my mastectomy “home”

leather recliner

I began my quest for the perfect home for my mastectomy recovery some time ago.  I read on Diana’s blog (mentioned above) that she set up a “throne” in her recliner.  And Mandi, over at Darn Good Lemonade, also recommended a recliner.  Needless to say, if I was going to spend money on a recliner, I wanted one that I would actually like to use after I’m done recovering.  So, I begged and pleaded with the husband to get the one you see pictured left.  When we buy furniture, we try to buy nice stuff.  We’ve had our couch since 2004 and it’s starting to get threadbare but it’s still comfortable.  And, we invested in a leather chair-and-a-half that is still in prime condition (but does’t recline).  So, since his parents offered to help us with the cost as our Christmas gift, we jumped on the opportunity!  What I enjoy about this chair more so than any other I scoped out online is that it is top grain leather, doesn’t swivel, and has clean lines (no getting crumbs stuck in tufting or bulging cushions).  The leather will allow me to scoot off it without the friction of fabric.  And, the best part, is that the recliner is powered, people!  It has buttons on the inside of the arm within easy reach.  And, it reclines almost flat!!!  This chair fits neatly in the corner of my bedroom and will fit my nightstand next to it quite easily.

chair reclined
My mastectomy “bed.”

I will continue to set up my mastectomy home over the next two weeks.  I want to have all necessities within easy reach.  I anticipate this recovery will be more difficult than my hysterectomy recovery. I read on cancer.org that I may be “up and around in 6-8 weeks.”  Yikes!  That’s a long time.  At least I know my area will be ready for my homecoming, which will help take some of the stress out of my recovery!

Have any helpful hints for removing from surgery?  If so shout them out in the comments!

Thankful Thursday: August 25, 2016

I tried to get all fancy for today’s post but I’m having FTP difficulties with the image I wanted to post.  So, you get this lovely quote without any finery.  I think, however, the words ring even more true when presented simply.

“Stories make us even more alive, more human, more courageous, more loving.”      
–Madeleine L’Engle 

quote accessed at goodreads.com

 

 

Recovery Road- Work is a Workout

This week has been very busy at work and home.  As mentioned in previous posts, the kids are back to school.   Normally, I’d be back to school myself at this time, fixing up my classroom and organizing for the start of another great year.  August is my busiest month.  Since my job this fall is to stay home and recover from surgeries, my role at my real job has dramatically changed.  I spent the day today completing a technology training that involved a scavenger hunt and helping the teacher who would have been my kindergarten team member get her classroom ready.  She and her assistant are both new to the kindergarten level, so helping her get settled and establish her brand new classroom has been a top priority. I did bail on her for the year, after all, so I take the blame for leaving her to fend for herself, so to speak.

WOrk on healing

Green TeaAs a result of all of this activity, I came home absolutely exhausted.  In fact, I took a nap.  People, I don’t nap, or at least, I didn’t before my LAVH.  I’d only nap if I was sick. Well, I guess that confirms that my body is still healing if I’m still wanting to nap.  So, here I am, post-nap and only wanting to sleep more!  Pitiful.  The kids are home, however, so sleeping is truly impossible.  Instead I’m enjoying a cup of tea on this rainy day.  I was too lazy to make coffee.

What do you do when you’re tired?

My Current Read
My Current Read

What do you like to do when you’re feeling lazy?  My go-to activity is reading.  I love a good book. Today, I’m recommending a book that’s got me hooked: Ms. Peregrine’s School for Peculiar Children by Ransom Riggs.  The only problem with this book is that I can’t put it down, which can, at times, keep me up later than desired even when I’m tired!  Don’t spoil the book by commenting because I’m not done with it yet!  I want the book to just keep going.  Ever feel that?  I want to plow through but I can’t bear the thought of it ending.

I plan to post frequently with book recommendations.  My reality is resting is the road to recovery.  Healing is a lot of work.

 

Attempting Normal: A Day At Work

apple for teacher
Teaching is the Best- photo from andeecollard on Flickr

I’m a teacher.  I work in a small private school, and I love my job.  Today, I returned to work for training, but not as a teacher; I am working strictly as a sub this year.  I am excited to sub and work with the various ages of kiddos in our building, but I must admit that I felt a good deal of sadness sitting in a room full of my awesome women coworkers and feeling a bit like an outsider.  It’s like I’m not really “there.”  I won’t be able to call a group of students “my kids” this year.  I won’t have the privilege of seeing my students grow from that deer-in-the-headlights first day until they graduate at the end of the year.  I won’t be that special teacher who makes a difference.

I hope you are like me and that you have the privilege of loving what you do.  The reality of my job is that I cannot return to my job and my class when all of this is said and done this school year.  I know that I would not be a good teacher if I attempted to return to work mid-year; this would not be good for the students; little people thrive on consistency and routine and to toss me in would be an unnecessary stress for everyone.  And yet, I’m mourning the class I didn’t get to have.

 Seeing the Situation as a Glass Half-full

Alright.  Got that out of my system.  The good part of this wacky year is that I get to experience what it’s like to be a stay-at-home mom with two kids in school.  Can we say empty house?  Yes!!!  I’ve been in the workforce since my son was four; he’s now seven.  I am a lucky girl that I am able to stay home without any pressure to return to work when I’d be better served resting and recovering–some women are not so fortunate.  I will be using my time off to be a better mom and to gather ideas on how to be a better teacher.

So, here’s to loving what you do, and being healthy enough to do it!  I’ll rest assured knowing that after this crazy year, I will be back to doing what I love!

Little People Teacher
Happy Teaching! via Sarah Joy on Flickr.

 

Happy Homelife: Baking!

My kid start school tomorrow.  I know some parents are sad about their babies starting or returning to school.  I am not that parent.  My kids like school, and I like them going.  We have had enough of each other.  Have you seen the skit by the Holderness Family on Youtube?  No?  Well, you should; it defines exactly how I feel!  I mean, this has been going on half of the day today:

wrestling children
Wrestling children

Yep, my daughter captured my son and proceeded to tickle him until he screamed and tried to knock her one in the head.

And, as a sign that the crafts have taken over, I found this gem in my coffee this morning:

peeler bead in coffee
Yep, that’s a Perler Bead

But, I’m a Good Mom, So…

I’e been spending some time this afternoon making them Reese's and Nestle Cookiestreats for their lunches for the first week of school.  Yes, sometimes I am “that mom.”  Truth is, I like to bake; I find it therapeutic. I like the way baking makes the house smell.  I enjoy the calm I feel when I pull another fresh batch out of the oven; I have a sense of accomplishment that I don’t get doing other tasks at home.  Too bad this therapy also comes with the expansion of your waistline if you’re not careful and have no willpower (which I would totally know nothing about, or anything).  I suggest you keep only part of these and give the rest away!  You’ve been warned!

Don’t Feel Guilty About Doing Things You Enjoy

Let’s face it, if you’re going through this proactive process of dealing with your health, you have a lot on your mind and not a whole lot  you can do.  Each of us handles this stress differently. I do like to read.  I love curling up in bed at the end of the day with a cup of tea and a good book. I like to exercise (but other than walking, that’s off limits). I like getting out and being around friends.  And, I like to bake (I made a simple apple crisp the other day and it was seriously fantastic!).  Baking may not be good for your waistline, but if you’ve never really tried baking, it’s a good time to learn.  As long as your ingredients (and mixer!) aren’t too heavy, give it a shot.  You may come to like it!  And, it’s a good way to get you up and walking around.

Pamela's baking mixI’m baking today, and this particular batch of cookies smells oh-so-good.  Before I tell you how I make these cookies that you won’t stop eating, you have to know that I follow a gluten free diet.  You can use regular all-purpose flour instead, and the recipe will turn out even tastier. If you use all-purpose flour, cut out the baking powder that I use in this recipe to try to make a fluffier cookie (gluten free cookies tend to go flat).    Without further ado….

Gluten Free Peanut Butter and Chocolate Chip Cookies

Preheat oven to 350 degrees.  Line baking sheets with parchment paper.

Ingredients:

  • 3/4 cup granulated sugar
  • 3/4 cup packed light brown sugar
  • 1 stick salted butter
  • 1/2 cup shortening
  • 2 eggs
  • 1 tsp. vanilla extract
  • 3 cups Pamela’s Baking and Pancake Mix
  • 1 tsp salt
  • 1 tsp baking soda
  • 1 1/2 tsp baking powder
  • chocolate chips (to taste)
  • peanut butter chips (to taste)
  • parchment paper
cookie dough
Cookie Dough!

In large mixing bowl, on low speed, blend together sugars, butter, and shortening until creamy.  Add eggs and vanilla.  In a separate bowl, combine baking mix, salt, baking soda, and baking powder.  Slowly add this mixture to the other ingredients.  Blend on medium speed until well-combined.  Add your desired amount of baking chips and stir to combine.

Drop tablespoon-sized balls of dough onto lined cookie sheet in rows of 4×3.  Bake for approximately 10min (keep an eye on them, they make take more or less time depending on the size of your cookies and your desired level of crispiness).  Remove cookies when they are golden brown.  Cool cookies on a baking rack.

Recipe makes approximately 3.5-4 dozen cookies.

baked cookies
Baked Chocolate Chip and PB Cookies

 

Hysterectomy Recovery: It’s a Long Road

If you’ve been following along with my journey, you will know that my hysterectomy recovery has much improved this week. I had energy, I wanted to go out and take my kids for fun activities the last week of their summer vacation, and I had my post-op and got scolded for lifting too much.  This weekend is proving to be a different story.

“Recovery”and “frustration” are siamese twins

shopping cart
via FolsomNatural on Flickr

I’m sure you’ve heard the adage, “one step forward, two steps back.”  Yeah, well, that saying seems to be my mantra for today.  Now, granted that I may feel tired because I stayed up too late reading (thanks to a friend of mine loaning me some books…yeah, that would be you, Allison), but I’m guessing it’s because my body is feeling rebellious.  I went to the grocery store (again, yes) and told the bagger to make sure he only lightly filled the bags (which he did), put them in the car, and drove them home.  I didn’t even unload them (though I did help put individual items away).  That outing zapped all of my energy.

I’ve Got, that Healing feeling…

brick wall
via Joseph Francis on Flickr

Where I’ve felt like I was making great progress this week, I can tell you my belly has been talking to me today and telling me a quite different story.  Odd twinges here and there say, “dumb, dumb, go sit down!”  I should know by now that things are not the same down there and healing takes time.  Unfortunately, my brain also seems to be storing that thought in short-term memory.  Doris, at “Hysterectomy Toolbox,” emphasizes this point quite well:

Your increasing stamina will cause you to do more than you should, thus leading to increased fatigue and a feeling that you are losing ground. This is a major turning point in internal healing, but to you it will feel like hitting a wall: more fatigue just when you are bored; more abdominal discomfort just when you thought you were really getting on top of things.

Yep.  That sounds about right.  So, I’m resting…typing this.  Blog therapy is the best.  If you feel like you’re hitting a wall metaphorically and, in frustration, want to hit a wall literally, then you know exactly what’s going on in my head.

Now, I think, it’s time to go lie down!  Netflix, anyone?

 

 

 

 

 

Hysterectomy Recovery: Not What You Think

hysterectomy recovery wearing pants

I’m wearing pants, people.  Well, when I feel like it, I’m wearing pants.  I compare this feeling to what it’s like getting to put on real clothes after a pregnancy.  This hysterectomy recovery, however, is not what you might think.  If you see me on the street, I look fine.  I’m moving pretty well.  My energy is returning, and I have a smile on my face because I’m genuine doing quite well.

A Long Recovery

Hysterectomy recovery solutions
Recovery Solutions

Now that I’m feeling better I struggle to remember that while I do have the energy to lead life “as normal,” the reality is that I should not resume many of the activities I am perform on a daily basis even though I feel better.  I had my two-week post-op this week and my P.A. chastised me for lifting a full gallon of milk.  A gallon of milk?  Seriously?  By my definition that’s not heavy.  The vacuum, yes.  Multiple bags of groceries, yes.  Closing the hatch on my SUV (thank goodness for that manual close button!), yes, but a gallon of milk?  Really?  So, I’m having to re-think how I define “heavy.”

On that note, do you know how much a full gallon of milk weighs?  The answer is approximately 8.75lbs.  There are many items in your house that weigh more than 8.75lbs. Don’t even think of lifting the vacuum or laundry basket (as mentioned in my previous post, Friends Are the Best).  The funny part is, it’s hard to tell what’s too heavy unless you weigh it, and by then it’s too late!  If in doubt, don’t do it.

Why is Recovery So Hard?

For active people, like me, recovery has its own challenges.  I like to be busy.  My husband works long hours, and in spite of what I preach, I have a really hard time asking for help, especially when it involves cleaning! My friends have young children.  We can afford a cleaning person.  I’m not going to ask a mom who is already struggling to keep her own head above water to come vacuum at my house simply because we choose not to hire a cleaning lady.  So, I’m forcing myself to be patient and turn a blind eye to what drives me crazy.  My husband can only do so much.  Though, on second thought, there’s no reason my almost ten-year-old daughter couldn’t vacuum…Hmm…New chore, I think, coming up!!!

No, really, it’s hard to remember that although you may feel better and look better, you aren’t healed inside.  Here is what my incisions look like:

IMG_6374
LAVH Incision Healing Up

Can you see it?  That’s my pointer finger next to the incision on my hip.  Each incision I have (and there are four) look like this one.  It’s smaller than most mosquito bites.  That being said, my P.A. reminded me that I’m not all better below the surface.  They had to cut through muscle and move some internal organs around to do this procedure.  They had to (sorry, if this is TMI), sew a vaginal cuff to close everything up where I once had a cervix.  The cuff has not yet healed completely.  I asked if I was recovered enough to go to a driving range for a friend’s birthday.  I’ll give you one guess what their answer was.  If I want a hernia, that’s the way to do it.

So, if you see me out and about, know I’m still not recovered.  In fact, I’m on these restrictions for four more weeks.  And do you all know what happens in that fourth week?  I have my mastectomy.  So, I’m in recovery mode for a LONG time.

Hysterectomy: Two Weeks Post-Op

I’m officially two weeks out from my hysterectomy/oophorectomy.  I am regaining my energy by the day.  I’m still banned from swimming, soaking in a tub, my kickboxing classes (waaahhh!) and  lifting anything heavy.  I feel much, much, better than I did at this time last week when I was napping pretty much every afternoon.

 Swelly Belly is Real!

My lack of energy and general discomfort last week was caused by Swelly Belly extraordinaire.  Before you think I’ve gone and lost it completely, I assure you that the phenomena known as “Swelly Belly” is real!!!  The wonderful hysterectomy support site entitled HysterSisters, even has a whole article dedicated to this lovely post-operative symptom.  You can read their article via the link at the bottom of this page.

For your viewing enjoyment, I present to you, the magically growing belly!

Swelly Belly by stages
Morning, midday, and evening from left to right

If I spent too much time on my feet, this is what happened.  My abdominal muscles experienced trauma and my back muscles have had to jump to the rescue.  If you plan to have this surgery, or any other abdominal surgery, I suggest taking some time to strengthen your legs and low back prior to the procedure.  My low back is not strong and I’ve been paying for it.  I ended each day feeling like a woman in her eighth month of pregnancy.

Buy Abdominal Support

hysterectomy abdominal supportI am so grateful to be feeling much better this week.  Part of the reason I’ve had such a transformation is because I had one family member and a friend recommend getting an abdominal support band (check out   one similar to what I’m wearing on Amazon). A friend loaned me her band and I’ve been wearing it religiously while up and about; I’ve found it to be a lifesaver.  The swelling is minimal now. I’ve always had a belly pooch, so I know the swelling has exacerbated that tummy, and this belly band keeps everything tucked in and helps my back in the process.  The belly band helped me return to the land of the living, which makes this extrovert a very happy camper.

I did enjoy the time I had to sit and be quiet last week.  If you are a parent, you know what I mean.  Alone time is precious!  I spent a good deal of time lying on my bed binge watching HBO series and and reading.  But, no matter how much I’ve enjoyed my quiet time, I’m looking forward to my activity level increasing every day!

Further reading on Hysterectomy Post-operative care: