Bring on February!!

I was going to post about my preop appointments and my interview with Linda Hurtado, but I would rather write about my feelings about tomorrow.  I want to remember these feelings and be able to look back in a few months and realize how far I've come.

Tomorrow is my big day.  Surgery is scheduled for 11:00am with Dr. Campbell, then Dr. Redmon will come in to do the reconstruction/expander placement.  I'm nervous, scared, melancholy, and ready for this.  As ready as I can be, really.

January has been the most challenging months of this journey so far.  I started off the month by battling the flu and my insurance company and the hospital about my deductible.  Once that was behind me I got sick again and have had a lingering cough which is MUCH MUCH better.  As I write this I am giving myself a nebulizer treatment.  Work has kept my mind off of the surgery by keeping me busy.  I haven't been able to run this month because of my colds.  Today Charlie got a fever and cough.  The poor little guy wouldn't take any tylenol and was just miserable.  He will probably stay home from school tomorrow.  With all of those challenges, it's only appropriate to end January with my biggest hurdle of them all - my prophylactic mastectomy.  I know I can do this.  I  know God and Jesus are on my side and with my doctors. 

February 1st will be a new start for me.  With February will come new obstacles on my road to recovery.  I will be living my life without the 87% chance of getting breast cancer.

XoXo

What's I'm wearing to my mastectomy.

Envision It...

I can envision myself a week from today sitting in my hospital room, my husband by my side, watching movies and enjoying my pain medicine.  A week from today my prophylactic mastectomy will be behind me.  I will have jumped the first and biggest hurdle in my BRCA journey.

January has been an insane month.  Not to focus on the negative, but let’s just recap the challenges I have faced this month.

1.       Dealing with the hospital and my deductible.

2.       Dealing with insurance and my deductible.

3.       Having to pay my $2,500 deductible up front and then learning from my plastic surgeon’s office that I owe them $400 and they want it now.

4.       Getting the flu.

5.       Being nauseous from tamiflu.

6.       Coughing my lungs out.

7.       Working, even with a 101.5 temperature.

8.       Getting work caught up for while I’m out.

9.       Getting sick again with some sort of upper respiratory thing.

10.   Cough some more.  Can’t breathe.

11.   And then the drama of the Young Previvor’s Group being deleted from facebook.

As I read that list, all of those things seem so trivial.  But when you add to that a prophylactic mastectomy, things can make you a little crazy.  I’m trying to stay positive and look on the bright side.  My deductible is paid, in full.  My plastic surgeon is paid.  I’m off the tamiflu and the zpack.  All I need to do is get rid of this cough, which is (thank you, Lord) getting better each day.  Work will be there when I get back.  The show will go on.  I’m starting to believe that all of the stresses I’ve encountered this month happened because I needed something to stop me from thinking about my surgery.  Really, I’m at the point right now where I just want to get it over with.

The mama J is coming down on Monday.  I work two half days next week, then I am off on Wednesday, and then it’s surgery day!!

I had my preop at the hospital on Wednesday.  For the most part, it went well, except for my mini breakdown.  I started off at registration filling out forms and signing papers.  Then I was led upstairs to the preop area and met with two nurses.  They made me feel comfortable by making me laugh.  When I whipped out my lunch bag filled with all of the medication I am currently taking, it took the nurse about 15 minutes to enter everything.  I went from no medication a year ago, to a laundry list of it today (most of it was from my cold).

The nurse had to take my blood, and I asked her to use my right arm.  A few months ago I tried to donate blood.  The girl was new and tried to get blood from my left arm, missed my vein and was digging around inside of my arm to find it.  It hurt so bad I nearly ran out of there crying and hadn’t given any blood.  The nurse on Wednesday tried to get it from my right arm, but I moved.  And it hurt.  So another nurse took it from my left arm and was so fast and asking me questions about my family history, but everything became just mumbled to me.  Then it hit me.  I’m about to have surgery!  I never had surgery before!  I broke down and cried.  The nurse hugged me and Jason was so supportive.  I cried for just a minute.  Then I did my Jack Shepard from Lost routine and moved on.

After the nurses finished with me, I was sent down for a chest x-ray.  Since I’ve been sick, the doctor wanted to make sure that my lungs were clear.  They are!  Just need to stop this cough!!

So, I am going to enjoy this weekend with Jason and Charlie, relax, get well and prepare for next week!

Save "Young Previvors"

At the beginning of my "BRCA journey" I felt so alone.  Everytime I mentioned BRCA to a family member or friend they would give me a sympathetic look but didn't really know what to say.  I wanted to meet someone who was in the same situation that I was in.  Someone who had the BRCA mutation and was faced with the difficult decision on deciding what to do with this knowledge.  I felt like I was the only person in the world who had to make this decision.

I reached out to Susan G. Komen who introduced me to FORCE (Facing Our Risk of Cancer Empowered).  Through FORCE's message boards I realized that there is a whole community of women out there with a BRCA mutation.  There was such a wide demographic of women... some had breast cancer, some did not, some were old, some were young.  The women who did not have breast cancer but chose to have Prophylactic Mastectomies even had a name for themselves - Previvors.  I suddenly realized that I am not alone!  I am a previvor!

I mad a wonderful friend through the FORCE message boards.  Her name is Vikkie.  She's my "British friend".  Vikkie was my first "BRCA friend", a girl my age with the BRCA mutation and about to undergo a PBM.  I truly believe that we were meant to be friends, even though we're an ocean apart.  Vikkie is having her PBM on February 12th, so we will be recovering together!

In September I heard about a Facebook Group called "Young Previvors".  Since this is a closed group I sent a request to join.  Immediately I found an overwhelming amount of support from girls who were Previvors and Survivors.  Some of the girls had undergone prophylactic mastectomies, oopherectomies and hysterectomies.  Others were choosing surveillance.  This group is a safe haven for nearly 200 women to express their fears and anxieties associated with having an increased risk of breast and ovarian cancer due to genetics. It is a private place where we leave our differences at the door. There's no judging, no criticizing. Just love and support from women who understand. I've made so many friends within this group. I don't think I would be nearly as confident in my decision to have a prophylactic mastectomy if it hadn't been for this group.

Today, January 25, 2013, facebook deleted "Young Previvors". The details as to why the group was removed are unknown. The admin, along with many of the women in the group, are fighting with all our might to get our page back. That's what previvors are - fighters.

Please take a moment to like the public "Young Previvors" page.  Give Us Back Our Support
We are hoping and praying to get facebook's attention and bring our private page back.  You can also e-mail disabled@facebook.com and personally request for our page to be brought back.

Thank you everyone for your support!

I was about ten-years-old when my Mom-mom had her mastectomy.  I didn’t understand why she needed to have surgery, but I was familiar with the whole hospital routine since my Pop-pop had his Open Heart Surgery when I was eight.  I visited my Mom-mom at the hospital once she came out of surgery.  She was still groggy, but happy to see me.

My Pop-pop didn’t want to stay at his house by himself that night, so I slept over while Mom-mom was in the hospital.  I had my own bedroom at their house since I stayed there a lot.  Mom-mom and Pop-pop practically raised me once my parents got divorced and my mom was working two (sometimes three) jobs.  I was going to sleep in my own bed that night, but Pop-pop asked me if I would sleep on the pull out futon in his room because he missed my Mom-mom.  Of course I would.

My Pop-pop passed away when I was 17.  He really was more like a father to me since my own dad left when I was nine.  I hope my Pop-pop is proud of the decision I’m making that took the life of his daughter and affected my mom and Mom-mom.  I know he’s my angel and will take care of me, just like I took care of him when my Mom-mom was in the hospital.

Insurance Woes

When you are planning for major surgery your mind tends to race a mile a minute.  Can I get the time off work?  Will we be able to pay all of our bills while I’m out of work?  Who is going to clean the house?  Who is going to cook?  Who is going to watch Charlie and who will feed the dogs?  Did I remember to fill all of my prescriptions?  All of these thoughts can turn a girl into a big ball of stress.  When you add the extra stress of dealing with insurance companies, hospitals and doctor’s offices, then that big ball of stress turns into big giant asteroid of stress about to crash into my world.

Let me start off by counting my blessings.  I am thankful that I have a job and I am thankful that I have insurance provided through that job, even though I am shelling out $400 per month for a premium and still have to meet a $2,500 deductible and $4,000 out of pocket max before anything is covered at 100%.  My company provides us with an HSA account and deposits half of our deductible into it for us.  This year, they switched from depositing all of the money on January 1^st to splitting it out into four payments throughout the year.  So instead of having half of my deductible at the time of my surgery I will only have $312.

I decided to be proactive and call the hospital in November to see if they are willing to set up a payment plan for me.  The woman, Nellie, was very helpful but informed me that her boss cannot make any decision until after the first of the year.  Being the OCD girl that I am and needing to have everything planned out before my surgery, I started to think of different ways to have my deductible covered.  I asked my benefits manager at work if there is any way for them to disburse all of my HSA funds in January.  I’ve worked for the company for over 5 years, so hopefully they would work with me.  I was told they would not do that. 

Next, I called my insurance company.  All preventative services are supposed to be covered at 100%.  My BRCAnalysis test was covered 100% and so was my mammogram.  Since my BRCAnalysis came back positive and I am having preventative surgery, you would think that it would be covered 100% as preventative.  Right?  Wrong.  Not only did the girl in customer service tell me it wasn’t covered as preventative (but will be covered after I reach my deductible) she pretty much told me “Well, this is your choice to have it done.  If we covered it 100% then anybody would have this surgery done.”  I then went on my tangent about how having a BRCA mutation means I have an 87% chance of getting breast cancer and how she should be more informed before making such rude comments.  I hung up on her.  Then I felt bad for hanging up.  So I called back and talked to another woman who was much kinder and understanding.

Today, I decided to call the hospital again to see if there has been any progress made on whether or not they will work out a payment plan with me or not.  Hey, it’s January 2^nd, surely they’ve been working on this since the strike of midnight on January 1^st!  Nellie told me that she was about to call me and has been working on my case since this morning, but she isn’t sure if her boss is going to approve a payment plan or not.  She will call me back later this week.  I’m four weeks away from surgery date and I want to know now!

I need to have options.  I e-mailed my benefits manager at work and told her that the hospital wants the deductible up front and if there is any way for them to escalate my request to have my HSA funds disbursed this month I would greatly appreciate it.

I must be patient.  If it is meant to be, it will be.  Sometimes I need to just learn to put things in God’s hands and pray that everything will turn out the way it is supposed to.  And breathe.  Just breathe.

This One's For You, Bridget Spence

Just the other day I was introduced to a truly inspiring blog – http://mybiggirlpants.blogspot.com/.  Bridget Spence was diagnosed with Stage IV metastatic breast cancer at 21 years old with no family history of the disease.  Not only has she fought with all her might for seven years, but she had such an amazing and uplifting spirit during her journey.  Her amazing attitude in her latest blog post was not one of regret or self pity, but thankfulness to everyone who has stood by her side, encouraged her and prayed with her every step of the way.

I’ve decided to start with Bridget’s first blog post and read about her journey.  I’ve found moments while reading Bridget’s blog that I want to just put down my iPhone and stop reading.  It’s too sad.  But I don’t think Bridget intended for her journey to make others sad.  Sometimes bad things to good people, but instead of wallowing in self pity make the best of every moment.  Treasure every moment with those you love.  You don’t get many choices when diagnosed with Stage IV breast cancer that has metastasized, but you do have the choice to either fight with all you have and know that you did everything in your power and made the most out of the precious time you were given on this earth, or you can curl up in a ball and hide from this demon we call cancer.  Bridget chose to fight, and with that she has touched the lives of more people than she will ever know.

Bridget wasn’t given an option to become a previvor.  I can’t help but feel so selfish when I am whining about my BRCA mutation and upcoming surgery.  What do I have to whine and complain about?  I have an amazing husband, a beautiful child and a wonderful life.  My BRCA mutation is a blessing.  Since learning of my mutated genes (I really hate that term – it makes me feel like an alien – I need a better word) I’ve had a newfound appreciation for life.  I try not to take things for granted.  I try not to judge other people because you never know what their journey may be.  I’m just thankful for all that God has blessed me with.  I have the opportunity to take control of my destiny.

Things can get overwhelming when you are making decisions that can and will affect the rest of your life.  It’s easy to get caught up in the moment and wonder ‘why me?’.  It’s OK to let those feelings wash over you.  To quote my all time favorite television show LOST,

“The terror was just so crazy.  So real.  And I knew I had to deal with it. So I just made a choice.  I’d let the fear in, let it take over, let it do its thing – but only for five seconds; that’s all I was going to give it.  So I started to count:  One.  Two.  Three.  Four.  Five.  Then it was gone.  I went back to work, sewed her up, and she was fine.”

For those of you who aren’t Lost fanatics, this was the first episode when Kate had to sew up Jack’s wound.

So the next time I get caught up in the fear and anxiety of what awaits me, I will let the fear wash over me for five seconds.  Then I will put on my big girl pants, squash those fears and move on.

Bridget Spence asked for a favor in 2010…

“I hope all of you can take tonight and look around at your husbands, wives, children, parents, friends. Hold on a little longer than is usual. Pull someone a bit closer. Thank God for a peaceful evening; not everyone is blessed with one tonight.”

I will do that tonight, Bridget, and every night.