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.