My sweet angel

My sweet angel

Friday, April 18, 2014

Breaking up with Blue Cross Blue Shield

I want to start off by letting you all know I'm doing well.  I go for my next PetScan June 23rd with results on the 24th.  Thank you all so much for your continuous prayers and well wishes.  I couldn't ask for better prayer warriors.

Now, on to more pressing matters at hand.  One thing you should know,  God forbid you ever have a catastrophic illness, such as cancer, touch your life:  it will ruin you financially.  As if you don't have enough to go through, you know, with the thought of dying and everything...

Before cancer, I had a near perfect credit score.  I could qualify for the best credit lines.  Then, in the blink of an eye my entire world changed.  I wasn't focused on the money though, I was focused on living.  I had insurance.  Why should I worry about money? HA HA HA HA!

1.  To all of you that don't know, there is a waiting period for social security disability (if they even approve you the first time you apply).  It is 6 months and you receive your first check the month after the 6 months (around the week your birthday would fall on).  My birthday is the 31st of October.  Lovely.  So, essentially 7 months with no income.

2.  I get just enough money through social security to not qualify for food stamps or medicaid.  So no help there.

3.  You are not eligible for Medicare until you've been disabled for 2 years (or are of the standard age which I think is 65).

So, you are expected to pay for your health insurance (premiums, deductibles, copays), normal living expenses, etc. with no money for 7 months and pay for insurance with only your social security for 2 years until Medicare kicks in.  Thank God, and all of you, for the outpouring of support since I began this never ending journey.  But, my credit cards have taken a hit with trying to pay deductibles and other unforeseen expenses.   As if that weren't bad enough, along comes my insurance company to seal my financial fate.

You see, they approved the radiation to my brain.  Of course they did, I looked hopeless then.  It was January 2013 and I had just been diagnosed with Stage 4 non small cell lung cancer.  I'm sure they were thinking, "this girl is a lost cause, let's just pay for these things, she will die soon enough".

Funny thing happened though, I started getting better thanks to God, my oncology team, and molecular testing.  I tested positive for the EGFR mutation.  So, once the cancer was out of my brain, the Tarceva (one a day chemo pill) started taking care of the rest.  It came down to one tumor.  One measly 4 cm primary tumor that would not go away!

Now, when you are staged as a cancer, you are always that stage.   No matter how far along I've come, I presented as stage 4 lung cancer, I will always be stage 4 lung cancer....even with that one measly tumor (which if I presented that way, would be early stage lung cancer, or stage I).

EGFR mutations can build a resistance to Tarceva.  We were afraid that my primary tumor had built that resistance.  Therefore, my oncologist suggested a brilliant plan.  Radiate that tumor.  Kill it before it can kill me, before it can spread it's resistance.  We were desperate to stop the tyranny of this deadly cancer inside of me.

One way of doing so, for early stage lung cancer, is through Stereotactic Body Radiation Therapy (SBRT).  It is high dose of radiation that is very localized, therefore not hurting the surrounding tissue and is used when surgery is not an option.  Logically speaking, if you only have one active tumor, why in the world would you not do that?

Well, Blue Cross Blue Shield of Georgia believes that it isn't "medically necessary".  Really?  I may be a "Stage 4 Lung Cancer" patient, but I had one tumor remaining.  Why not treat me like a Stage I?  I had no visible cancer anywhere except for that primary tumor.  I think the answer is: "Samantha, you are a liability and will just cost us more money in the long run".  So, after exhausting all of my appeals, here I am, left owing over $116.000 for the radiation.  This doesn't even include the two deductibles I have to meet since I changed insurances.  And let's not forget the out of pocket max!

Goodbye perfect credit!

To Blue Cross Blue Shield (a public response so your policy holders can be aware):

Your radiation oncologist AGREED with mine during the peer to peer review.  He agreed the SBRT was the right course of action to save my life.  I also would like you to check out the successful results in the link here from UCLA on SBRT:  UCLA Radiation Oncology FAQ

It clearly shows a very high success rate with the use of SBRT in lung cancer, particularly with one tumor, less than 6-7 cm.  Mine was 4 cm.  But, you are using your scapegoat "she's stage 4".  It's complete crap and we both know it.  If you think for a second that I'm going to just let this go, you are very much wrong.  I want to know what is "medically necessary" for me?  Death?

I'm 34 years old and have a daughter that I'm fighting for and believe me, I have a lot of fight.  I'm not going to go quietly into the night and I will not quit until everyone knows how you place your patients on a balance sheet.  You have your assets and liabilities.  What's the best way to deal with the liabilities?

It would be best if you could keep yourselves informed of the latest treatments in lung cancer.  How will our survival rates ever improve if insurance companies keep snuffing us out?  It has to stop.  Our doctors should have more say in our care, especially if it's been proven to work.  The fact that I presented originally as a stage 4 patient is a mere technicality you are using in order to get off the hook for your responsibility.  Your policy needs to be changed.  Quit giving up on us!

Additionally, I have a cousin, Jessica Johnson, who needs a knee scope and to cement a fractured knee that hasn't healed on it's own in 9 months.  She is the mother of 3 young children.  Her doctors have tried so much and you continue to deny her this treatment.  It's not "medically necessary".

Who are you to play God?  Are you our physicians?  Do you see us or know our strength, courage, and tenacity?  NO!

Stress is detrimental to your health BCBS.

If my doctor thinks something should be done to save my life...AND YOUR DOCTOR AGREES, but your policy states something different, I believe you should be re-evaluating your policy and maybe even the people who wrote it.  I am not done with this issue.  A friend actually pointed this article out from the University of Colorado, Denver:

"The traditional paradigm for cancer patients has been to switch your systemic therapy to another agent if you progress, even though a majority of your cancer may still be controlled by the original drug. But what if we could use targeted radiation therapy to eliminate those sites of errant disease so a person could stay on a specific drug longer?" says Gregory Gan, MD, PhD, a chief resident in the University of Colorado School of Medicine Department of Radiation Oncology and the paper's first author. "Using stereotactic body radiotherapy, we can ablate these limited sites of progressive disease so patients can continue on the drug they are on – a technique we refer to as 'weeding the garden'."

By the way, no active cancer was seen on my last two PetScans.  Seemed medically necessary to me!

To My Family, Friends, and Faithful Followers and Prayer Warriors:

Thank you for letting me vent to you and always being here for me.  Please don't use Blue Cross Blue Shield if given the option.  There are so many horror stories.  This isn't the first time they've denied a procedure for me.  But it is the last.

I've attached a copy of the letter showing the denial.  I've exhausted all appeals.  I'm also attaching a picture of Karley and I at lunch yesterday to show BCBS how well I'm doing in spite of their attempt to prevent it.

I'm not asking for money.  I'm asking you to help me fight them.  Write them, tweet them, let them know that we are not a lost cause!  And we will not be quiet about this!

Thank you for all of your prayers, help, and support.  I wouldn't be here without all of you, and our Lord Jesus Christ of course.  I'm so thankful to have you all in my corner.  Hope you all have a Happy Easter!  And don't forget the reason for this holiday, it's not for bunnies and egg hunts!

Mark 8:31
"He then began to teach them that the Son of Man must suffer many things and be rejected by the elders, chief priests, and teachers of the law, and that he must be killed and after three days rise again."










Saturday, April 5, 2014

Support

One thing I've learned, when you happen to get cancer, you always have cancer.  In your mind, it is never gone.  It messes with your head, so that every little ache or pain you have, you automatically think "cancer".

It's not just a physical illness.  It tears you apart emotionally, and can break you down to your core.  Of course you are able to have good days.  But some are bad.  I'm not in pain right now and my last two scans haven't shown any sign of active cancer cells.  And I am so grateful for that.  I want to be here to watch my sweet girl grow up.  I want to be here for every moment...

I guess I just miss my family and friends in Atlanta sometimes, and today is one of those days.  I miss their support and encouragement.  I have a handful of people here who care, and I'm so thankful for them.   I don't think I give Stephen enough credit on this blog.  He is always with me.  He has taken care of me like no one else here and I love him for everything that he has done and continues to do.

But, I want my family and friends from up there too.  The people that go to every appointment with me, cry with me, cheer with me, and pray with me before and after every piece of news we receive.  The people that can sit with me, just sit.  We don't have to talk, sometimes I hate to talk.  I just love their presence.  I love them.  I wish we lived closer.

I love the support groups I am a member of now.  I feel like they really understand.  But being a part of these groups comes with certain conditions.  Of these, you are going to lose some of your supporters and friends to this disease.  Recently, one of our beautiful fighters/advocates passed away from lung cancer.   Jessica Rice was only 33.   You can read her blog here:  http://stageiv.wordpress.com/

She was an inspirational woman, please pray for her family and friends.

I know I'm not alone.  I also know it's okay to not be strong all of the time.  That's where God comes in and I need Him pretty bad today.  Please don't think I'm depressed or anything, I'm just keeping this blog up to date so you all know how it is.

Thank you for your continued support and prayers.  God bless you all.

1 Corinthians 13:13
And now these three remain: faith, hope, and love.  But the greatest of these is love.


Sunday, March 23, 2014

Amazing Grace

I'm feeling much better today.  I actually felt better later the same afternoon but we had a lot going on, like celebrating!



Reggie got good news too. So, we were able to celebrate together.  My friends are so amazing.  God has truly blessed me with some awesome people that are always here for me.  Even if they couldn't make it to dinner, I know they would have been there had the results been bad.  

Just a reminder, as several people have asked, this is not the end of my journey with this cancer.  This is God giving me more time, in hopes of a cure or more life prolonging drugs.   I have an EGFR mutation.  It is an irreversible mutation to my DNA.  The chemo pills I take turn off the mutation.  One day the pill will build a resistance according to most doctors.  By then, we are praying for a great second line treatment (besides traditional chemo) or a cure.   There have been people on the same drug as me for many many years and the cancer hasn't returned.  

My family knows our lives can change every 3 months, or any minute for that matter.  Any of our lives can change that quickly, cancer isn't always the reason for unexpected life changes.   Of course all of you know that, but how often do you think about it?  

I'm on the Free to Breathe Atlanta committee this year.  If you would like to join and walk/run with us, you can register here: Team Karley

This year I decided to name the team after Karley.  She's my rock and I love her so much.  She deserves to grow up with her mommy around.  So, I'm participating for her.  She will be there too!

If you can't make it and would like to donate, you can do so through the team page or my personal page click here: Samantha Mixon

Thank you all for your support and continuous prayers.  And most importantly, thank you Lord for your amazing grace.   You've given me such a fresh outlook on this precious life.  And I promise not to take it for granted again.  

I'll keep updating as anything new comes up.  Right now I'm feeling pretty good, home now, just craving a nap!

Ephesians 2:8-9

For it is by grace you have been saved, through faith--and this not from yourselves, it is the gift of God--  not by works, so that no one can boast.

Friday, March 21, 2014

Results 3/21/14

Thank you so much for all of your prayers.  And even more thanks to the good Lord for hearing them!  

My PetScan results were good once again.  The primary tumor is still gone.  There is still some inflammation from the radiation.  I asked how long this lasts, and was told "a long time".  I don't think my oncologist likes to put time periods on anything.  So, no visible cancer anywhere.  There is a spot in the right middle lobe that is so small it may just be a blood vessel so we are going to watch.

So, next petscan in 3 months.  I made my appt. at the end of May so Karley can come up with me.

I can't tell you how much it means to have so much support and so many people who care.  God bless all of you.  Now we just need to keep praying for Reggie too today.  Still waiting on his results.  And please keep your prayers coming for me and my family.  They are working!

I'm feeling a little under the weather right now or I would write more.  I had more to say, but it will have to wait until I feel better.  Until then...THANK YOU for being here!  Thumbs up for this scan!

2 Corinthians 5:7
We live by faith; not by sight 







Friday, March 14, 2014

Warriors

I know I promised an update last month, but I've been so busy!

Karley came through her surgery like the warrior she is and her hearing is getting better every day now.  She's so strong, I'm such a proud mama. (Pictures below).  Also, she just became a first cousin to Brantley Kurt Neundorfer this month.  She's super excited about that!  Congratulations to Kyle and Debbie!





I attended Marjorie Polks' Celebration of Life Memorial Service recently.  It hit pretty hard.  She was such a beautiful person, it wasn't really real until we were there.  Please continue to pray for her family and friends through this difficult time.  I'm thankful she's no longer in pain.

Neither is my Uncle Jerry.  We had a small memorial on St. Simons this past weekend for him, please pray for the family.  I've posted a few pictures from that and Marjorie's memorial below.  I love you Uncle Jerry, RIP.  Both lost their battles with cancer, both were warriors.









So my next scans are coming up March 20th and results on March 21st (next week).  These will be very important because we will see if the primary tumor is truly gone, since the inflammation and pneumonitis from radiation has resolved.

I also didn't want to write before now because I wasn't sure what to say.  This past Wednesday I went to bible study and we went over a few things that made me really think about my life.  The questions was posed, "In light of my past experiences, current circumstances, and future hopes and dreams, where do I need to make small deposits of time over time?  What is the wise thing to do with my time?"

My future hopes and dreams?  Sometimes I feel as those were crushed around November 27, 2012.  I try not to think about that because things have been going well.  It's always in the back of my mind though.  It's totally life changing. Don't worry guys, I'm not giving up. This is just my new normal, I am a warrior too.

It's a great question though, for all of us, because small deposits of time over time make a huge difference in our lives.  My deposits of time will be going into growing in my relationship with God and raising Karley.  Where will yours go?

Thank you for your continued support and prayers for both Reggie and me as well as our families and friends.  They mean so much.  Please keep them coming, God is listening!  God bless you all!

I'll let you all know the results of the PetScan when I get them.  So, I'll be updating my blog next weekend at the latest.  In the meantime, I'll be living.



Acts 14:22
"They encouraged them to continue in the faith, reminding them that we must suffer many hardships to enter the Kingdom of God"

Wednesday, February 19, 2014

Tomorrow is Another Day

Yesterday started out great.  Thanks to Roz, a fellow lung cancer advocate, I was chosen as "Diva for a Day".  They contacted Island Day Spa and the spa donated  a deep tissue massage, facial, manicure and pedicure, hair wash and blow out, and make up.   I was literally there for 4 hours.  It was so relaxing and I'm so thankful to Roz, Island Day Spa, and Diva for a Day foundation.


After the spa day, I headed back home to take a nap.  Shortly after I walked in the door, I got the call from my dad that my uncle had just passed away.   Knowing that my sister couldn't make it, I knew that my dad shouldn't be alone.  I packed my bags and caught the last flight up here to Atlanta.

Uncle Jerry was only 62 and passed away  after a short battle with liver cancer.  He leaves behind his son, John Allen Mixon and his sisters Anne Duke and Jean Hartley, and  his brother John Mixon as well as several nieces and nephews and great nieces and nephews..  Please pray for the Mixon family as one of our loved ones is  gone.  Although he is in a better place and no longer in pain, it is tough for the ones still here.

Today my dad's best friend, Roy Smith, lost his mother as well.  We just left the hospital after spending some time with him.  Please keep Roy and his family in your prayers too.

And finally, Karley has her ear surgery tomorrow.  Please pray for  a successful surgery and recovery.  I know the good Lord will be watching over her and I am flying back tonight.   Nothing can keep me from being there with her.

I'm hoping to be able to make it to my uncle's memorial service, but am not sure I can yet, considering  Karley's surgery.

There's so much sadness right now but I am thankful and blessed that I'm able to be here with my dad last night and today.  I just hate having to leave.

Thank you all for your constant prayers and support for my family, friends, and me.  I'm feeling good right now and am thankful  for that.  I'm thanking God every day for this time he is giving me.

I'll update after Karley's surgery this weekend.  Next weekend is Marjorie's memorial service so I'll be back in Atlanta for that.   God bless you all!

Ecclesiastes 6:10

Everything has already been decided.  It was known long ago what each person would be.  So there's no use arguing with God about your destiny.  

Tuesday, February 4, 2014

World Cancer Day - changes and losses

I felt compelled to write today because it is World Cancer Day.  I'm aware of the American Cancer Society and it's efforts to raise money through the "purple roads" campaign.  I have conflicting feelings towards the American Cancer Society.  If you don't have lung cancer, maybe they are good for you. The only event they do annually for lung cancer is the "Great American Smoke Out".  This just further stigmatizes lung cancer as purely a smokers disease.  Not true.  But if a smoker did get cancer, do they deserve it?  NO!  I think the American Cancer Society has the potential and ability to help change the face of lung cancer and help us rise above the incredibly low survival rate of 15%.  We just have to get them to do it.  Right now, they are hurting us more than helping us.  A picture is worth 1,000 words.

If you are a lung cancer advocate or would like to donate to a lung cancer cause, go to Free To Breathe (fka National Lung Cancer Partnership).   Also, if you're a facebook user, have lung cancer, and want a good site for encouragement and support, try Lung Cancer Survivors Foundation

That being said, please don't hate me or my opinions, but this is my blog, and I want everyone out there to know how I feel about this.  They do great things for other cancers, I'm not knocking that at all, I think that's terrific.  I just feel like all of us cancer warriors should be treated equally, and I encourage you to write to them to do more for lung cancer.  Thankfully we have the smaller organizations that are growing in an effort to bring awareness and fund research.  N\O ONE DESERVES CANCER.

I'm going to stop my rambling and write about two people who have touched my life significantly, and this day is the appropriate day for it.  I think cancer has touched everyone reading this blog right now in one way or another.  Otherwise, I doubt you would be reading it....  So, here we go...

Marjorie Polk lost her battle to kidney cancer on Monday January 27, 2014.  I first met Marjorie as we were both waiting for our MRIs.  We found out we had the same group of friends, but I had moved and wasn't around as much.  We also found out we had the same neurologist and oncologist, both the same age, and both mothers.  We often text messaged each other about our progress, but it seemed like my results were getting better and hers were getting worse.  When I first learned that she was too far gone, I cried a lot.  You get to know people when you have cancer, and by gaining these friends you know that you may lose them.  I also felt somewhat guilty when telling her my results after hearing hers each time.  She was always happy for me regardless, and always positive when she spoke with me.  She was a beautiful soul and is now celebrating, pain free, with our Lord.  She left behind a husband and two children.  If you are interested in donating to her children, you can through paypal at marjorie.davidson.polk@gmail.com  Just follow this link to get started https://www.paypal.com/us/webapps/mpp/send-money-online  Please pray for strength for her family during this difficult time. Rest In Peace Marjorie



Additionally, I would like to ask for prayers for my Uncle Jerry.  The same day Marjorie passed, he collapsed and was rushed to the ER.   It was determined he has liver cancer.  The doctors have only given him a few months.  He's my dad's baby brother and has a son in college, John Allen Mixon.  Please pray for him to go peacefully and pain free.  And pray for his family.  I hope he knows that I do love him, even if I'm so far away right now.  I plan on going to Atlanta soon to be with my dad during this difficult time.

The aforementioned stories are tragic. We are all going to leave this world one day, but it doesn't mean we have to die. I believe in God and when we pass on, we have the opportunity to go to a far better place than ever imagined.   Make the most of the present, we are not guaranteed a future.  In fact, I despise planning now.

Live for today, forgive others, be kind and love one another.  Such important things to remember, and hard to do in this crazy world today, but it's better than having regrets that you didn't do them.  Life is too short!  Hold on tight to the ones you love!

Thank you all  for your continued support and prayers for me and my family and friends.  Your prayers have done so much, the power of prayer is amazing!  Our God is amazing!

Ecclesiastes 11:5
"Just as you cannot understand the path of the wind or the mystery of a tiny baby growing in its mother's womb, so you cannot understand the activity of God, who does all things"