Category Archives: Family

My DACA Journey

From yoga instructor on Facebook this morning.

Quique (pronounced Key-Kay) was eight the first time I met him. I didn’t know, until recently, that he had walked across the desert for five or six days just a few months before to enter the US. (Can you imagine walking days in the heat with three kids?)  I asked if he remembered the journey. He nodded, because he doesn’t talk much until you hang out for a long while. At eight, he lived in a small camper with his family: mother, father, sister, brother and himself, a quarter mile or so from us.  (I cannot say I have had much conversation with his family because of the language barrier, but also because they are very unassuming.  They don’t ask for anything.  They have shared vegetables from their garden before and I have taken small pints of raspberries from my raspberry bushes to share, but that is the extent of our relationship.)  A few years later, Quique and his family moved 15 miles away, and we didn’t see him again.

(I also didn’t realize he didn’t understand anything I was saying to him all those years ago, he would just laugh at us and go along with whatever we were doing.  So my attempts to manage our little visitor when we took him to church were not usually successful.)

Fast forward a few years.  New neighbors moved in to the trailer that adjoins our yard, essentially living in our backyard.  I noticed a teenage boy in a black hoodie waiting for the bus every morning when I left for work.  It took a few weeks (maybe months) for me to realize that he was little Quique, all grown up, and now going by Rick (name changed to protect identity).  I was excited to see him again, and we began to converse in the yard occasionally.  He started going to church with us again and becoming one of ‘my kids’.  Not long after Rick moved back, my son turned 16.  As we were going through the “learning to drive” process (aka my kid is going to wreck my car and kill us both process), I asked Rick if he was going to get his license.  In his hesitant way, he explained that he couldn’t. If you’re an illegal, you have to purchase a fake driver’s license and fake documents to work, social security cards etc.  This made me so sad.  This boy, with high grades in school, who would help my grandparents plant flowers, who would keep me company as I worked in the yard, his future was stunted by his birth in a place he can hardly remember living. I spent quite a bit of time in prayer over this. One night, I awoke in the middle of the night with the thought Your brother in law is an immigration attorney… How I failed to remember this, I don’t know, but the next day brought on a new journey that I never knew I would take.  The task: Get Rick a License!

I don’t remember the conversation with Daniel, but somehow I learned of DACA for the first time.  I learned that was the only way for Rick to get a legal status to be here (unless he wanted to get married), to drive, to work, to not have to worry that he could be deported for trying to live a normal American life.  He didn’t ask for help. He and his family didn’t receive any form of government assistance.  His father worked in a mill and a second job as a farm hand to support their family of five.  He wasn’t looking for handouts.  He wasn’t looking for a hand up. He was looking to do what God has designed every man to do: work.  I realize the thought that work is to be avoided has permeated our society.  However, Solomon would disagree with the notion that work is to be avoided.  Check out some proverbs about it.

So DACA… It isn’t easy to qualify for DACA.  We had to provide proof that he was in the US before age 16. School records helped a lot (thank you Mrs. Baird for your assistance in this), but we had to produce bills, phone records etc. from 10 years earlier.  I don’t know if you know this, but when you don’t have a social security number or credit cards, and you don’t read English (so you can’t write checks if you have a checking account) you pay cash, FOR EVERYTHING.  You don’t have a plan at AT&T, you buy minutes at Walmart.  When you’ve moved around, you don’t have random stacks of old bills just laying around. We had to get a copy of his birth certificate from his grandma, in Mexico.  Then we had to translate the birth certificate.  Thankfully, a friend at church was willing to do this for us. (I don’t understand this.  It’s not like there aren’t people at homeland security who can read Spanish, but I don’t make the rules!). He had to send in a photo ID.  I mentioned that you can’t get one of those without legal proof that you can be here, right?!? I think we may have ended up sending in a school ID.    After we gathered the correct documentation, passport photos, a urine sample, hair DNA testing (I may be exaggerating on the last two), we mailed it all in with the proper forms and a $400+ money order.  Then we waited.  I don’t remember how long it was but, later we got notice that we screwed something up and had to send in more documentation.  Finally, Rick got a letter that he had to go to Nashville on a set date two weeks in the future.  I was scheduled to work that day.  I tried to call to change the appointment, but there was no number on the letter, no email address. We could send a letter to Washington DC requesting a change of appointment, but if we failed to appear at the appointed time it could make things more difficult in the future. I changed my work schedule, and we made the two hour trek to Nashville.  When we arrived, there was a sign on the door announcing no phones, electronic devices or purses were allowed inside.  We had to go through security (the security officer was nice enough).  When we got there for the finger printing, we were told we needed a transcript from the school proving he was a high school student.  I asked for a fax number or email address where they could send the documentation.  We found out they don’t share such information, nor do they tell you their names.  Remember, I couldn’t bring my iPhone or my iPad in to show an email of the documents.  I don’t remember how we solved that problem, but it worked out.  Finally, after months of work and waiting, the ID showed up in the mail. 

The further we got into the process , the more I realized he couldn’t do this without me.  We live in rural Kentucky.  He doesn’t have the transportation to Nashville.  He wouldn’t have known how to get the documentation.  His family couldn’t have communicated well enough to help him.  I never realized how oppressed many immigrants in our nation are, not because someone is trying to keep them down, but because of language barriers, because of laws and practices that those of us born here just don’t know and have little reason to think about or understand.  Because we don’t know or understand, we don’t do anything to change them. Reading through Facebook, we spend a good deal of thought (or at least opinions) judging immigrants for not doing what we do or not “getting in line” to enter the country.  What we don’t understand is that there isn’t a line, and if there were, most couldn’t afford to be in it.  We have NO concept of the life they are leaving when they risk their lives to come here.

I remember visiting Cancun with my mom when I was 19. We rented a car for a day and got a little turned around.  We ended up in a  neighborhood that tourists aren’t supposed to see.  I vividly remember seeing a man riding a bicycle with his family on it with him, his wife and three kids!  The homes were mostly made of tin sheets leaned together.  I had never seen anything like it before. The part of Mexico Rick is from is notorious for its drug lords.  I think that is why his sister is so scared of being deported.  What would she have to do to survive in such a place?

Writing this blog has me thinking a great deal of my immigrant heritage. Today, I visited my grandparents to ask questions about immigration. I wish (I could figure out how to add that audio here!) My paternal great grandmother, Martha,  immigrated from Germany in 1888.  I asked my grandfather what he knew about that.  His grandparents had family who had migrated to Iowa and they decided to join them. Before Martha was two, her family went to the river bank in Germany to find a boat to take them to America. The family had to wait a time (I assume camping) until space was available for the clan. They came through Ellis Island and went through the process of becoming Americans.  Apparently, at that time, the government was giving away land; if you worked the land for a certain period of time, they gave it to you.  

My grandmother’s great grandmother came over from Germany with six children. Her husband died the day they embarked in New Orleans.  She and her brood traveled up the Mississippi River to St. Louis and joined a group of Lutheran Germans with an orphanage. She put four of the children in an orphanage while she worked as a domestic until she was able to marry and old widower. She then retrieved her children from the orphanage. She had another child after marrying him, and that was her grandmother, Lizzie. I’m attaching my Grandmother’s writing to her daughter on the subject. 

Back to Rick
So you ask… Did he get his license? Well, I took both boys to take their permit test the same day.  In Kentucky, you don’t just have to have proof of who you are, you also have to have a social security card to get a license.  We had been told we didn’t have to have a social security card with the ID card he had, but apparently we were told incorrectly.  So, that started a new journey… getting a social security number.  That, my friends, is a pain in the a❤️❤️! I won’t bore you with the details, but because he has a social security number, he can work, he can pay taxes, he can pay for health and dental and vision insurance for himself.  He would like to go to school, but that is going to require a little more saving and taking the actual driver test (He has his permit and is a good driver.  He can even parallel park.) so he can drive to class, and purchasing a car.  I don’t know if you can tell, I am especially proud of my friend, and the way he has faced difficulties without any resentment.  He has persevered with great gratitude and great attitude.
Though Rick is reserved, he’s quick witted, with a goofy joke always ready. He asks deep questions in a quiet unassuming way.  His calm demeanor and gentle smile is a nice change from the loud banter that accompanies my brood at Sunday afternoon lunch.  I know as he continues into manhood I will see him less and less.

  His family no longer walks through my yard to go fishing at the local pond.  Rick has since moved from my back yard.  The owner of the trailer his family resided in passed away and it will soon be torn down (its over forty years old and falling apart more with every rain storm).  They are living in a nicer home now, I hear, and with Rick working, a lot of pressure has been taken off of his family.  He is a saver.  He has a good bit of money saved to pay cash for his first car (some good habits – like not having debt- can come out of hardship).  He goes to work every morning between four and six with his dad, and gets off in the evenings between three and five.  
Regardless of your opinion on immigrants, here is the truth.  We have a group of people who have lived here most all of their lives. Many, like Rick, are bilingual, but significantly more fluent in reading English than their native language because that is what they were taught in school.  They are a significant, important part of our society.  For a time, many have had legal status to work and behave in American society as a contributor.  DACA is being receinded. It is in Congress’s hands to decide the fate of these young adults. My hope and prayer is that they will make a path to create a more perminant legal status for people who have been trained by our schools and cultures to be Americans.  My hope and prayer is that they will create a path to citizenship for those who would like to be a part of our nation.  My wish, is that we had as extensive of a vetting system for those of us born here, and that there was a place to deport some of them! (You think I’m joking, I’m not.)

There’s a part of me that wants to tell Rick to spend the next six months continuing to save. Then to pay a woman to marry him. He would make a great husband.  He is kind, and funny, and never harsh.  He works and cares well for his family. The problem is, we believe in God’s design for marriage: one man, one woman, no divorce. Fortunately, God loves Rick and his family. He will never forsake him. God has greater plans for Rick’s life than either of us can imagine, just like he does for all of my kids. So, I can only encourage him as I do all the others. Obey God, and get ready to be blown away by his goodness and providence.
Please, contact your legislators and encourage them to make a path for these people who trusted our government, trusted DACA. These people are vetted, they must renew every two years to the cost of over $400, background checks, finger printing and (for us) another trip to Nashville.  This isn’t a free loader program. It’s also not a permanent solution, and we need one that benefits both our economy and these people stuck in a situation they neither created nor can control.

Blessings!

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Out of Control… I understand why people hate insurance

selfie
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.
    proton-vs-xray
    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!

head-fact-sheet
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