Out of Control… I understand why people hate insurance

One of the first pictures where I noticed muscle atrophy on my left side.

Before you start reading today, I want to ask a favor.  If you enjoy reading my blogs, can you share this one?  I am hoping that getting some exposure might help me get approval for the treatment I am going to explain to you… which has been denied 3 times already.  Thanks & Blessings …Kate Mathis

Out of Control… that best sums up this past week.  I have no control over this thing that has grown in my head. I have no control over the people who are deciding if I can have the treatments the doctors ordered.  I cannot undo the Affordable Care  Act that somehow lead to my insurance company ceasing to approve the mode of treatment my doctors think is best for defeating this cancer.  I have put off writing this post because I always want to write from a place of hope, and part of this week I have been frustrated, angry or disgusted, not with this tumor, but with procedures and policies and the with fact that as a society we have to be more concerned with whether we can be sued for a decision instead of doing the right thing to take care of people.  This drives my nuts in normal, cancer free life, but now it effects my future health.  Now, it is likely going to mean I will have a feeding tube because of burns at the site of treatment, it has the potential to blind me, cause secondary tumors in a few years from radiation treatments, and decrease my 5 year outlook of living disease free by 22%.

I was led to blog this journey from the beginning with the hope that others will find strength when they face difficulties in life.  If I only share when things are fine, I am a hypocrite at best and, more realistically, a liar.  So, for the sake of true transparency, I am writing the truth, so when you think you are facing the impossible, you will remember God is in control.

It’s easy to lack peace when you’re out of control. Yet, aren’t we always out of control? Seriously, two months ago I spent a ridiculous amount of time thinking about the $20,000/ year it will cost to send my son to a state college, and that I don’t have enough savings to pay $80,000 for his education out of pocket, not realizing what money we had saved was going to be relocated  (as well as the HSA balance we planned to use for my daughter’s braces) to pay for my Proton Therapy treatments. (Hey we won’t have savings, maybe he will get scholarships this way, right???)   With insurance, our out of pocket costs, rent for an apartment, the multiple flights to Texas, lost income (disability pays 66% of my pay, and Cary will run out of sick time for part of our treatment), Uber, and eating out costs are adding up to clean out the checking/savings that I have been so disciplined to build up over the last 20 years.  We did it right, we save 10-20% of our income, we payed off everything we owed.  These decisions allowed me to step down from my high pressured job for a few years so I can spend this time with my family. (Oh my!  This is the first time I realized the gravity of that decision, and the regret I would have if I had not made it and had these last two years.  Thank you Jesus for leading me in that way.  You are so good!)  As we told Ty, this is why you save.  (And buy a trusty cancer policy from American Fidelity –  I do wish I could buy the policy I sell to my school employees because it’s even better than the one I have. It makes me happy to know my clients would have an extra $10-20K to put toward these expenses. The first check did show up in the mail yesterday.  It will pay for my expenses so far, praise God!)

I don’t tell you this to get sympathy, but to tell you that my trust in savings and my ability to earn really didn’t matter.  At the end of it all, we couldn’t save enough to cover this one.  My suggested treatment cost estimate is somewhere between $170,000 -$249,000. (Please note, this is not what I have to pay, but what insurance will pay minus my max out of pocket.) This is an incredibly huge number, I know.  I cannot believe it & I am so thankful that treatments and insurance are available.  However, Aetna has denied my treatment plan for Proton therapy three times.  They are willing to pay for IMRT therapy.  This costs $15, 000-$30,000 less, but comes with a lot more health risks.  We are appealing it again.  Please pray with us that they will make the decision to give me the best chance at a long, disease free life.  So,  if Aetna continues to deny my claim, I have a choice to make: Do I mortgage my home to pay for treatment or Do I take the IMRT treatment?

So what do you do when you recognize that despite all your practices and manipulating to feel like you are in control are just illusions?  You either freak out and have panic attacks and lose sleep, or you recognize the truth.  GOD IS SO MUCH BIGGER THAN THIS!!  Several years ago, I was doing a Sozo ministry session with a gentleman.  He had the best vision that gives me perspective when I think about problems I face.   He pictured his problem (hurt, pain, sin), it looked like a huge tornado that was barreling down on him and was going to destroy him.  Then, we asked Father God to show him what the problem looked like from his point of view.  He said he was sitting in God’s lap, looking down at the Father’s feet.  There was a teeny tiny pile of dirt.  God blew on it and it was gone, he was safe.  Scripture says the earth is the Father’s foot stool.  It also says that he goes before me to defeat my enemies.  Scripture affirms that he loves me and created me for his glory. I’m all good when I remember this!   Nothing seems very intimidating when I remember look through then lenses of Heaven instead of the lenses of Earth. “Thy Kingdom come, thy will be done on Earth (in my life) as it is in Heaven!” Hallelujah!  I’m excited to see how HE defeats this thing! Amen? Amen!!  And then you rest at night, think about other things during the day, and get on with life.

 

So here we are:

I quote my father, “If this tumor were on your foot, we wouldn’t be having this discussion.  However, this is near your brain, your eyes, your mouth.  IMRT could cause damage leading to blindness.”  Not easy to see your dad tearing up while talking about your diagnosis.  Not easy to think of parenting 3 kids, working two jobs while fighting disease/damage caused by the treatment you are depending on to save your life…

Here are some of facts as I understand them from talking to my insurance company, my employer, my father and brother (physicians), MD Anderson, and reading numerous medical journals.

1. Proton Therapy will protect nearby organs.  Because of the location of my tumor, those organs include my eyes, ears, spine, brain stem, neck, brain, jaw… you know, all the most important stuff for normal life function.  It GREATLY reduces the risk that I will require a feeding tube as I go through treatments or that I will have cancer later caused by treatment.
   

   

   See how much less anatomy is exposed to radiation with proton therapy?

 

According to “WEB REVIEW – Proton therapy has advantages over IMRT for advanced head and neck cancers posted on July 1, 2014 –  Medical press

Researchers reviewed studies of nasal cavity and paranasal sinus tumors through extensive database searches. They included studies of patients who had no previous treatment – neither primary radiation therapy nor adjuvant radiation therapy—and patients who had recurrent disease. Researchers collected data on overall survival, disease-free survival, and tumor control, at five years and at the patient’s longest follow-up. Researchers found disease free survival to be significantly higher at five years for patients receiving proton therapy than for patients receiving IMRT (72% versus 50%). Tumor control did not differ between treatment groups at five years however tumor control was higher for patients receiving proton therapy than for IMRT at the longest follow-up (81% versus 64%).

http://www.proton-therapy.org/medexpress_july2014.html – Retrieved 12/13/16

So, I think the big issue is that proton therapy doesn’t have a vastly different effect on the tumor itself, however the difference in disease free survival  is big! I’m 39, and planning to live A LONG FREAKING TIME!

My tumor is roughly 1″x 1″ x 1.5″ in the Nasopharynx.  

2. Aetna has said Proton therapy for my type of tumor is experimental.   The oldest study I have read was from Massachusetts General Hospital, Massachusetts Eye and Ear Infirmary, and Harvard Medical School, Boston where patients with adenoid cystic carcinoma with skull base extension were treated with combined proton and photon radiotherapy from 1991 (I was in 9th grade) to 2002. Mass General has regularly offered proton therapy since 2001.  MD Anderson has offered proton therapy since 2006, that is 10 years.  They have 6 proton therapy machines; one of them is specifically used for head and neck cancer.  There are proton therapy centers in California, Indianapolis, Cincinnati, and multiple other places in our nation and many other nations.  In fact, one of the ladies helping treat me is training because she is going to be working at the new facility opening in 2018 in Franklin, TN that will be associated with Vanderbilt.  This evidence contradicts the idea of experimental treatment, don’t you think. And the treatment is approved by the FDA.  

At this point, my multiple conversations are running together, but someone has indicated to me that this treatment used to be covered, but with changes that came through with the affordable care act, that has ceased. My doctors went to school to know about cancer. Our government officials were elected (mostly because they were better at digging up dirt on their opponents… sorry, left over bitterness to the last two years of trash…).  Most of them haven’t been to medical school or practiced oncology for 22 years… just saying!  Did I mention there were 9 Radiology Oncologists who ran a scope up my nose, studied the 18,000 images of my head, and worked together on forming a plan?  9, at arguably the best cancer hospital in the world…)
3. Proton Therapy is more precise than IMRT.  It allows the practitioner to deliver the treatment to the tumor itself, and stop there.  The proton does not pass through to the tissue behind the tumor.  It doesn’t injure the tissue is passes through as drastically IMRT. The science behind it is crazy awesome, physics at it’s best! (Mr. Hunley would be so proud.)  This is specifically important for my treatment because the tumor is located in my head.  (Don’t I wish this were all just in my head LOL…)  It has blocked off the Eustachian tube in my ear, and is also tangled up with my trigeminal nerve, pushing against my artery coming into my head, and pressing against my brain. 

According to the “WEB REVIEW – Proton therapy for head & neck cancer,”

Posted on June 28, 2014 in The Proton Therapy Today, an online magazine on proton therapy,

“More than 100,000 people will be diagnosed with head and neck cancer this year in the US, according to the Head and Neck Cancer Alliance. While many of those cancers are curable, patients face a number of challenges due to their complex location.

Physicians are tasked with preserving healthy surrounding structures such as the optic nerves, eyes, brain stem, and spinal cord while also treating a patient’s malignant tumor. Protons offer potential advantages in treating cancers of the head and neck by delivering high radiation doses to the cancer target while sparing sensitive structures. As a result, proton therapy may reduce the risk of side effects and late complications from radiation treatment, which can include neurologic complications such as blindness and hearing loss as well as effects such as xerostomia that impact one’s quality of life.

Proton therapy may also allow patients to better tolerate systemic therapies like chemotherapy when combined with radiation therapy. In patients with recurrences after previous radiation therapy, proton therapy may allow further treatment to be done while minimizing the risks.

http://www.newswise.com/articles/proton-therapy-provides-innovative-treatment-options-for-head-and-neck-cancer – Retrieved 12/13/16

4.  All of these facts are limited to Earthly perspective.  They do not trump God! So, I’m not getting discouraged by them.  I ask you not to either.  Just pray with me & we will trust him together.

Interesting Fact: Oklahoma passed a bill that you can’t hold proton therapy to a higher standard than other therapies… my company is based out of Oklahoma… hmmm

Proton therapy is a medical procedure that uses a beam of protons to irradiate diseased tissue and was approved for cancer treatment by the Food and Drug Administration in 1988. Its chief advantage over other radiation therapy treatments: It can more precisely localize the radiation dose, reducing side effects to surrounding tissue, according to the measure’s author, Rep. Marion Cooksey. “This has met the test, and it is better than traditional radiation,” the Edmond Republican said while introducing the measure to House members. But the therapy’s cost has prompted some health insurance companies to require it meet an even higher level of clinical evidence than other forms of radiation therapy. Cooksey said traditional radiation therapies can cost around $9,000 while proton therapy costs about $14,000.The bill provides guidelines for insurers to use when deciding whether to cover proton radiation therapy and ensures that the physician has the final say — not the insurance company, she said. “They justify this decision by citing the lack of long-term studies, but it’s not really a valid argument,” Cooksey said. Passage of the measure was welcomed by a cancer survivor who said he benefited from proton therapy. “It honestly was a blessing,” Mike Bible, 69, of Oklahoma City, said. A Vietnam veteran, Bible said he was diagnosed with prostate cancer in 2012 and received proton radiation therapy at a facility in Oklahoma City in 2013. His treatments were paid for by Medicare. “It leaves no side effects. I was able to go along with my quality of life,” Bible said. “Regular radiation is like a shotgun. But proton therapy is very targeted, it’s better than a rifle. It targets the tumor. There’s no damage to any other organs. “Bible said he is now cancer-free and that other Vietnam veterans he knows have also received proton therapy.”The long-term benefits are so essential,” Bible said.—Online: House Bill 1515: http://bit.ly/1Ea8MQC

Read more here: http://www.thestate.com/2015/03/11/4038323_oklahoma-house-considers-proton.html?rh=1#storylink=cpy  – Retrieved 12/13/16

 

Resource Articles:

http://www.seattlecca.org/diseases/proton-therapy-head-neck-cancers.cfm

http://www.cancer.gov/types/head-and-neck/head-neck-fact-sheet

Multifold Optimization Intensity Modulated Proton Therapy for Head and Neck Tumors: A Translation to Practice” by Frank SJ, Cox JD, Gillin M, Mohan R, Garden AS, Rosenthal DI, Gunn GB, Weber RS, Kies MS, Lewin JS, Munsell MF, Palmer MB, Sahoo N, Zhang X, Liu W, Zhu XR.                                                                                                                             Int J Radiat Oncol Biol Phys. 2014 Jul 15;89(4):846-53. doi: 10.1016/j.ijrobp.2014.04.019.

http://www.sciencedirect.com/science/article/pii/S0360301614004908