The internet mistake 

Posting this a couple of days after writing. I’ve been a little lost in my head and didn’t want to post in a confused state of mind. I’m all good now!

November 20, 2016 Tonight I did it. I googled Nasopharyngeal tumor. I learned a lot: they usually occur in Asian men who eat smoky meat and/work with formaldehyde, they are linked with Epstine Barr, they can be benign (usually in children), they are successfully treatable, they are hard to get to but operable & they can spread, usually aren’t found until later stages & a person can die. (But not this person!)

 This may have been a bad idea. I’m not the Web MD type. I typically ignore symptoms and push on. So, I had a thought, one of many I’ve refused to have since this started, “I want at least 4 more years. I want D to be old enough to remember me, I want time with my babies.” I quickly suppressed it and replaced it with “I want 60 more years! I want to see my great-great grandbabies.” But, it made it through.

I haven’t done anything to deserve my husband. He’s good on any given day, but through this, I’m beyond anything I deserve. Tonight I started having spasms in my jaw & I couldn’t get them to stop. Cary climbed behind me in bed, reclined me back on him and held my jaw in place so the muscles could relax. His touch just settles everything. He’s so strong and warm and safe. I don’t know how to be loved like this, but I’m thankful for the opportunity to experience it.

As I lay here, pain free, listening to him sleeping, tears streaming (but only on the right side b/c the left quit tearing a couple of weeks ago), I hear God say, “That’s a taste of my love. I’m going to show you even more, just watch me!” So I say thank you & I watch.

November 21 Today I haven’t had pain. I felt good all day & evening. I got a phone call from my cousin with a very specific word to declare Psalms 118 over myself. I’m claiming the scriptures! 

Psalms 118:15-19

Shouts of joy and victory resound in the tents of the righteous: “The Lord’s right hand has done mighty things!  The Lord’s right hand is lifted high;  the Lord’s right hand has done mighty things!”

I will not die but live,

and will proclaim what the Lord has done.  The Lord has chastened me severely, but he has not given me over to death.  Open for me the gates of the righteous;  I will enter and give thanks to the Lord.

It’s so easy to let fear creep in, but it profits me nothing, it only steals my joy today. 

My Moto the last few months has become: God is good! He does what he says he will do! I can trust him! 

He says I will live. I believe him. I’ve seen his mighty hand act on behalf of friends, family, strangers. I’ve seen withered hands unfold, I’ve seen shoulders healed, I’ve seen backs restored, I’ve seen knees restored, I’ve seen legs grow. I’ve received Holy Spirit’s revelation & wisdom. I don’t worship a dead God. My God is not indifferent! He loves me. He sings over me. He has placed bold believers in my life who stand with me. He heals. He is the same yesterday, today and forever. So I praise him!

This trial is a mere chapter in a book. It’s not the end! In Jesus’s name!

I’ve worried about so much crap

 We are in the airport in Houston waiting to fly home.  This morning the reality of what could be started to sink in.  This could be a major life event, this could be difficult, this could be gone when they get MRI results back (this is Deacon’s prediction).  This is the first time I remember not thinking into the future.  I don’t mean hopes and dreams, I mean my next meal, the next day, next week.  When I cook breakfast (hot cakes 30 seconds in the microwave) I’m thinking about where I am working for the day, spelling words, grocery lists. When I’m at the movies, I’m thinking about election forms and school districts.  When I’m driving down the road I may think of the what if’s. (Which is why I have already lived this scenario several times… it was worse in my head) I used to not sleep on Sunday nights because I would be up worrying about the schools I was working in the next week.  All of this is useless. A waste of energy.  I’ve known this & I’ve been improving, but I am still for the first time in my adult memory just here. I can’t plan my work weeks for the next month because I don’t know when I’ll be in town.  I can’t plan Christmas parties or advent messages.  I have to say, I like it. It’s a relief to not have the ability to micromanage my schedule.

I like being present.  I am decent at it when working.  I want to be better at it when I’m at home.  I remember laying on the couch watching Cheers with my mom as she rubbed my head.  I won’t really have those moments with my kids because I’m always doing or planning.  I want to change that. More time in the living room, less time exhausted from my life…

Cary prayed yesterday morning before we got out of bed, “Father, this day is yours…” I’ve prayed that prayer before, and often make up my mind to make it my every day prayer, but then life happens and I am back to my old habits.  I listened to a message by Alyn Jones about the Kind Messenger, that often God uses a kind messenger before sending a harder life lesson.  I don’t want to say that God is putting me here or causing this tumor, however he promises to work all things together for the good of those who love him and are called according to his purposes.  I certainly believe he can use it to teach me & maybe this is the kind messenger. https://itunes.apple.com/us/podcast/keeping-up-with-the-joneses/id878470120?mt=2&i=374676968

As long as I’m listing good habits.  I want to be more generous.  I day dream of giving large amounts of money or opportunity to people who can grow from it, but I know this habit starts small.  It starts with giving what you have to someone who needs.  I was talking with a friend last week after the election.  I was discussing my concern for people in nations that rely on our support, like Syria, that have no way to help themselves or save their children’s lives.   We also discussed that we will likely have larger tax returns next year with administration changes.  I don’t want to put that money back into my household.  (Actually, I do want to put that money into my household, we pay for college and another kid enters high school this year.)  Our family lives a comfortable life.  We, as Americans consume 26% of the things purchased on this earth, but we only make up 4% of the population.  If you are a US citizen, you earn more than the “rich people” in other places, you are the upper echelon.  If we are a believer in Christ, we are responsible to realize that & use your resources to reflect Christ.  And so you are in a position to do something to make a difference in the world. You don’t have to create an organization or raise a million dollars, but sow something, whatever something is on your heart.  I have friends who gave their car to a family in their church instead selling it.  It wasn’t worth a lot, but to a family without a car, it was of great value! My cousin works for an organization called Mercy Corps.  She is the reason I read articles about Yemen and I dream about raising enough money in my church in support a village for a year. She is the son I trust this organization to use my donation responsibly. Mercy Corps (http://www.huffingtonpost.com/entry/yemen-hopeless-international-community_us_581ad480e4b08f9841ad63d4?qcaaeswwjthoj38fr) So, I challenge you to consider how you can invest in others. And I invite you to hold me accountable to this, otherwise my selfishness will take over.
Blessings to you friends. Thanks for reading.

Appointments

People need to be seen.  Everyone here is so nice. It’s even more impressive than I heard. They take special care to know your name, and to say hello and goodbye. It matters. I need to remember that if I ever own/run a business. 

I met the man who built/designed the medical building were sitting 20 years ago. He was sitting beside me as a patient in the first waiting room. (He appreciated the irony of it as much as I did.) We met with Dr. Demonte, he is a scull base specialist (seriously, that’s his area of expertise). You sign in on an iPad and they text you instructions. They’ve done a brilliant job of using technology, but keeping things personal. 

After discussion, the next steps are finish the tests scheduled today, get a biopsy, and form a plan. The plan implementation won’t begin until after Thanksgiving. 

Dr. Demonte said there is a panel of about 60 people who work to form the plan of action. That’s crazy! A nurse told us the way this works. On Thursday evening, staff meets in a big room and each tells about their cases & how they think they can help the person. Synergy at its best!

I met woman from Dubai who is here with her son who is having treatments. His brothers are with him too. She’s very proud of her burka from Spain. It’s metal and I’m sure allow her to see better. They are a sweet & have invited me to visit. Unfortunately, we don’t speak enough of each other’s language to nail down flight details.😏✈️

Fadma from Dubai

Note to self: start learning/remembering more about eye contact in other countries. I think I freak people out sometimes.

Scan me in, Scotty! I scanned myself in with a scanner like they have at Kroger to the lab. The lab tech called back 4 of us at a time. It’s quite an organized operation.

I can’t feel my face when I’m with Su, but I like her…  Dr. Su is a neck and head specialist. I think she is the one who is charged with figuring out what this thing is. My visit started with another retelling of when my symptoms started, what they are & checking for muscle weakness. Yet again I recognize that many of the problems I’ve had physically the last few years were linked to this. And it sparks hope of a better quality of life. 

The resident under her sprayed stuff up my nose that had me numb down to my vocal chords and the roof of my mouth. It tasted terrible, but did the job. Then they ran a long scope smaller than a 1/8 of an inchwide up my nose, down my throat and through my brain, I think. They took me in the next room and ran a couple of things up my nose and took a biopsy of the tumor. I almost passed out. Things started going black, but they got what they needed. (Don’t think this is too dramatic. I did the same thing during my mammogram & that was a cake walk. It was painful.) Thankfully, dad was there to raise my feet above my head, which did the trick. The neat part is, my family got to watch it on a screen.

So we have a sample. It will be another week or so before we find anything out. We will be home to eat turkey. We will be back in Houston in a few weeks.

I ended my medical day with an MRI  It lasted an hour. As I was laying there, before I fell asleep, I was thinking of what a blessing this is. I am so thankful for the workers who have cared for me, for the friends and strangers who have supported us with encouraging messages and prayers & just reading these blogs. I’m thankful for The peace of God that continues to suround me every moment.  What really has my heart stirring is the people who have gone before, those who faced cancer and other medical difficulties and allowed the medical community to learn from their experience so we can know what we know, so others can live. Thank you.
I have to share this funny story. We Ubered to dinner. Our driver was great! Tomorrow, he is retiring with 21 years in the military. He works in a lab doing cancer research. He has been doing Uber since September. He told this story of his first night driving:  He picked up a group of college kids from a bar. He said there were a ton of them. He told one of the guys he was in the military. 

Kid:   I could take you.       

Driver: Take me where?      

Kid:  I could take you. I could kick your butt.                                   

Driver: Ha, you think so?                 

Kid: Yeah! I could take you. I play Call of Duty!                                 

Driver: Yeah ok, you bring it. 

MD Anderson 

I’m writing from the Plane          As we pulled out of the driveway Cary said, “Well you haven’t woken me up to say this is just a dream, so I guess we are going to do this.

Everything I hear about MD Anderson is positive. I haven’t made it there yet, but all my interactions thus far have been positive. I’ve learned a lot. 

They first called me on my way out of the hospital from getting my MRI results to get health insurance information and start working to set up an appointment time.  I haven’t ever really been sick before, so the slowness of medical time is new to me and it is foreign.  Don’t take this to mean MD Anderson is slow, quite the opposite.  I am in awe of how quickly they have gotten me in and how efficiently they operate. To explain: my appointment is tomorrow, Friday, at 9:00 in the morning. I called to try to figure out when to get a flight home.  I was expecting an explanation like, “You should be done by 3:00.” What I got was, “We tell people to plan to be here 3-5 days.” What! Well, ok.  They did look at my chart and told me I could leave Saturday evening, probably.

There’s an App for That Seriously, there is an MD Anderson app.  They way it works is you set up an account online.  They send an email saying you have a message.  You go check the message.  Eventually there will be lab reports and other things there.  Most of my messages are about surveys and appointment times, which are adding up. So far: 9:00 initial visit stuff, 9:30 brain doctor, 10:00 lab work, 12:00 neck and head doctor (this appointment is 15 minutes). (As a friend said, if they are trying to fix my head it will take a lot longer than 15 minutes. And that is why I love her!) 1:00 nuclear medicine injection, 3:00 full body bone scan, 4:45 MRI of my face.

Housing I think there are 6 hospitals within walking distance of each other.  It is a serious medical community.  There is a website Joeshouse.org that helps patients find affordable housing for their stay because most everything is outpatient.  We are staying in a 2 bedroom apartment.  It think that’s a great deal & we can walk to the hospital. I’ve heard everything is connected by skywalk. Kind of sounds like the Jetsons.  Maybe they will suck us through a tube from one place to another.

The apartment complex where we are staying. Elan Med Center

Jeremiah 

I found this in my drafts from last fall. I don’t have answers, but I think it’s good to think on.  

If you’ve been in church very long, you have heard Jeremiah 29:11-12 “For I know the plans I have for you,”. declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.”

This scripture is one of promise! It’s a good promise, but it’s not what I want to focus on today.  My mind is hashing out the order of things a few chapters back leading up to chapter 29.  Jeremiah was a prophet. The message from the Lord was a grim one.  The instructions were strange: strap a yoke on your neck, send a message to the surrounding kings from the Lord that basically is: I’m in charge of the earth and everything in it.  I decide who rules and who reigns. Nebuchadnezzar is my servant and I’m going to give you in to his hands for three generations.  Don’t fight this, it is going to happen. If you don’t serve him, I will crush you. There are going to be false prophets who try to tell you something different.  They are lying. If you submit to Babylon, you will get too stay in your own land and live.

Another prophet, Hananiah, shows up.   He has a positive happy message that within two years, things stolen will be returned, all the exiles will return. Jeremiah says he hopes Hananiah is right, but he respectfully disagrees with the prophesy.  Hananiah takes the yoke off of Jeremiah and breaks it, and Jeremiah leaves.  Soon, Jeremiah receives a word for Hananiah that “the Lord has not sent you and you have persuaded this nation to trust in lies.” and you’re going to die.  Then, he dies.

Jeremiah then sends letters to the exiles in Babylon telling them to settle in and go on with life where they are, because they are not going anywhere soon. The exiles, of course, do not like this message, but if you read Jeremiah 29: 1-7 it is a message of hope and instruction. It wasn’t what the people wanted to haer, but the goodness of the Lord is evident in the message.

A host of questions are banging against the side of my skull at this point: How did Jeremiah know that was the Lord’s message? How did Hananiah get it so wrong? Was he so distraught by Jeremiah’s message & so desperate for hope that he opened himself up to false prophesy? Did he just want to be popular & make prophets look better in the eye of the public?  Did he see that they had killed the last prophet with a message similar to Jeremiah’s and he wanted to save his own life? Did he fail to see God’s goodness in Jeremiah’s work and decide it must be wrong and so come with a “better more God worthy” word?

How do I make sure I am hearing the Lord and sharing His word? Where am I desperate enough to be misled into false belief for the sake of peace or popularity or fear? What messages from the Lord am I softening, when in reality I am just failing to tell the truth, which is lying?  Where do I fail to see God’s goodness or nature because I am focused on the negative, and thus fail to believe truth?

It’s not a Tumor… (you have to do it in Arnold’s voice)

This year I’ve had a colonoscopy, an endoscopy, and a mammogram.  I swear, I’m not a hypochondriac. I only take a multivitamin & vitamin B. I see the doctor for check ups, but “I’m close to that age…” (No, I’m 28, my birth certificate is lying!) The tests have all come back normal. So I expected a similar result when I went in for an MRI to rule out MS last week. I’m 39, at least on paper.

They were ruling out MS because my jaw went numb on my left side a couple of months ago & it was spreading. I have struggled with ear pain for years & was convinced I had trigeminal neuralgia. (Truth: I only went to the doctor because I’m vain and my left cheek bone was protruding further than the right🙄.)

So, last Monday I had an MRI. I was scheduled to return for a consult on the 30th. On Tuesday (election day) I traveled to Frankfort for work.  That evening I ignored a call from a woman about work (I thought). Then my husband called asking me why I didn’t answer the phone. The doctor’s office wanted me to call first thing in the morning. Hmm, that’s probably not good. 

I called my friend – you know the one who is always there, the voice of reason, the one who steps on your toes when you need it & sometimes when you don’t- that friend. I told her I was trying not to freak out, she listened and then began what has become my common theme this week… she prayed over me. She didn’t pray for me, she prayed over me, as I listened and received God’s peace in the process. I hung up, called my husband & my parents, and text my prayer warriors. Then I went to bed and slept soundly. Seriously, I did.

The next morning I went to work for a couple of hours, still at peace. When I called the doctor, they asked me to come in that day and not put it off. “I can’t tell you much, the doctor will have to be the one to read the report, but we need to see you today if at all possible.” 

Prayer #2 came from a colleague just before I hopped in the car and spent two hours talking on the phone and day dreaming about possible problems. I figured it couldn’t be too bad, they were letting me drive, right? 

As I thought through different scenarios, I started to pray. I don’t remember the words, but I remember this idea,”Lord, I told you when I was 19 my life and my death were yours. Use this to draw my family to you. Use this so others see you. I trust you, you’ve got this, no matter what this is.” Again, just complete peace.

My mother and my husband met me at the doctor’s office. We traveled up an elevator to a waiting room and were escorted in pretty quickly.  The doctor was great. He was approachable, asking questions about symptoms, tapping on elbows and knees, nodding in an understanding way as I explained my pain and numbness. All the while I’m waiting to hear MS. “You have tumor.” Well, ok. Somehow that sounds better.

We went to look at pictures, which for this nerdy girl, was a delight. And suddenly it made total sense. Yes, that explained why I couldn’t fly without pain meds, the ruptured ear drum, the dry eye. 

Turns out this tumor is “unique” (I’m nothing if not unique!) and it’s probably best to visit a doctor at MD Anderson who specializes in this sort of thing. Thankfully my doctor has worked with the best in the country before. Waiting for him to get things lined up in Texas, I learned I’m particularly bad at sitting in silence waiting for news to sink in, so I cracked jokes instead. Cary was kind to put up with my insensitivity. I know this was much harder on him than I.

This is where I find myself now. Waiting a few more days to travel. I figure I will share this journey, if you’d like to come along.

I’ve been through several different feelings, and peace is the most consistent. None have them have been worry or pity. In fact, I don’t like hearing other people express those emotions on my behalf (I do appreciate them & feel loved.) No, what I feel is gratitude that I live in  a nation with health care & doctors. I’m grateful I can fly on a plane and don’t have to walk.  And I’m excited. I’m excited because God is good, He will do what he says he will do & I can trust him. And I’m loved. I am overwhelmed by coworkers and friends and people I don’t know who will stop and pray or send a friendly message. I’m overwhelmed by the strength of my husband’s arms when they are wrapped around me. I’m overwhelmed by God’s presence every moment. It’s a beautiful place to be.