Category Archives: Adjusting to NF2

August 6, 2013 · 4:56 pm

Good grief

If someone asked me if there was a particular book I found myself returning to and rereading, I would have to answer: The Book of Psalms. Don’t get me wrong…I could say ‘The Bible’ as a whole, but even within the Bible, I am consistently in the Psalms. The Book of Psalms seems to cover every emotion of the human heart: anger, fear, sorrow, joy, peace, praise, questions…whatever situation I find myself in, I can find a Psalm to encourage, comfort or challenge my thoughts.

I am not sure what initially caught my attention to the phrase, but I started to note that “steadfast love” made a common appearance throughout the whole book. I recently restarted the Psalms, this time with the intent of not skipping around, but rather reading through the book in numeral order and making reference to the verses containing the phrase, “steadfast love.” I have just begun and realize that there will be many references by the time I reach Psalm 150. 🙂

Seeing, reading, hearing or writing certain phrases (or words) will cause them to get in your mind, and out of the reoccurrence, a habit of saying the phrases (or words) is most likely to follow. Habits like this are strange. It is not that I planned to get myself in phrase habits…it just happens.

The first time I think I started getting into phrase habits was when my sister started to use the term, “cutsie” in describing things. I started to say it, because I heard her say it. Once I got to college, I stopped saying the word. Then there was the term, “Cool beans.” What that means, I am not quite sure but I am glad I chose that particular phrase instead of “Dude.” For some odd reason, I never found myself sounding realistic when I said, “I know dude.” It would be as if I were quoting Janice from the Muppets, “Oh wow, like for surely.” Both were just not in my personality profile I suppose.

Last summer the word was “genius.” If I agreed with something: “Genius!” If I thought a point was well made in a conversation: “Genius.” If I learned something new or finally understood something that was trying to be communicated: “Genius.” Along the way, with my fascination for English/UK history growing, I then ventured to also stating, “brilliant” after my train of thoughts if “genius” had not already been spoken. Of course, I know where I got my word “brilliant” from: try not to laugh but it is the truth–Yzma, off of Disney’s The Emperor’s New Groove. Truth spoken. 🙂 [And if you haven’t seen the movie…you must!]

As of the present, my phrase is “Good grief.” I have no idea where this came from–I don’t even read the cartoon Peanuts either.

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The phrase itself is neutral; the context of how I say it is when it differs from a plain mutter to a complete mode of venting my frustration. I don’t apply it to people as I did the word, “genius’, but rather I find this time my phrase habit is associated with my physical state. I run into the wall as I turn the corner: “Good grief” (muttered). I can’t get my bobby pins in my hair or my pants buttoned: “Good grief!” (with tone of frustration and a slight, ‘ugh’ added.) I spill something, drop something or can’t get something open: “Good grief” (sort of in whinny tone). These are just a few…but my reoccurrence of the phrase has me once and for all thinking in my mind: “Good grief…why can’t I stop saying this phrase?”

I have tried. Then I catch myself saying it again and it starts to play like a broken record in my mind. I am not sure how to break myself from this phrase habit. I have before with the others but this time since I am sincerely trying to stop the habit, I find it more continual. So as I read the Psalms yesterday, the thought dawned on me that if I see, read, hear, or write a phrase that a habit of saying it will be more likely to follow.

I may not walk around and say, “steadfast love” after every sentence, but it could very well be a map of a new habitual phrase. In seeking the continual reminder of God’s steadfast love, I hope to find that in the end all of my ‘good griefs’ will fade to where only His goodness remains.

Let your steadfast love, O Lord, be upon us, even as we hope in you.

Psalm 33:22 ESV

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July 31, 2013 · 10:22 pm

One month…

Yesterday marked one month of taking the chemo treatment, Sirolimus. Because it was the end of my first 28 day cycle of the drug, Mom and I headed down to Children’s for a doctor’s appointment. It ended up taking all afternoon.

It is strange. This time around it is as if I am indifferent as to what comes next. In discussing the issues at hand, I made my point clear about what direction I wanted to take in terms of treatment time without much else running through my mind. My doctor asked me if I wanted to continue. I simply said that I would for one more month until the MRI. If I stop now then how will I know if the treatments have been given a chance to maybe show something positive on the next MRI? He agreed that one month more is a good decision.

My indifference comes in part, however, because I also mentioned that I would not be surprised if the scans reflected negatively–based on the amount of physical changes I have had over even just this past month. More wobbly balance, weaker right ankle, extreme numbness in right hand, and hearing loss in the right ear. From the time I bought the Phonak Cros to the time it arrived, I had lost hearing in the right ear and I believe I still am. I returned the Cros last week, but I am satisfied with my choice to do so and glad I at least gave the device a trial run.

It is hard to decipher what is causing what problems. Since I started the treatment, I have had more problems with my intestines…but it is hard to point a finger only at the Sirolimus when I have also had an increase of pressure from the tumors there at the lower spine. Every physical problem seems to get tangled around an “unknown source” linked to the problem. Of course we all know that the “unknown source” is a tumor, but which one? That is the question. And I think that is why I just left all emotions yesterday. I have no control over what happens over the next month. Tumors may or may not be growing; even if they do not show change in size, they can change in density and still cause side effects. So I just let myself become void of it all.

I was quiet on the way home. I was not even thinking much about the appointment. I was thinking more about the conversation my dad and I had a few nights prior. We were discussing my walking, weak ankles, my muscles and bones, and my shoes. If you don’t remember, I have a knack for cute shoes. To me, they complete the outfit. As Dad and I were talking, what he was saying made sense: I do need sturdy shoes as now my bones are thinning and weakening and my balance is only so-so. I wear good shoes for a majority of the time, but I like to wear a cute pair of slip on shoes if I am going out to church or to a coffee shop and I like to go barefoot when I can at home. It might be time to rethink that latter part–is what Dad and I discussed.

In my distress of our shoe conversation (serious…giving up my shoes!?!), Dad told me that I should not worry about my shoes, because I am fashionable with my accessories, like scarves and bracelets. I thought that was a nice complement. I talked with my doctor about the shoes and what Dad said when we were discussing my feet. “I agree with him 100%,” (referring to the sturdy shoe notion.) So on the way home, half lamenting and half planning what to do with my shoes, I just let my mind wander. All over shoes.

We get home and Dad asks how the appointment went. “It was long.” That is all I said. Then I made tea. I finally started talking about the appointment (even though my mind was still on my shoes) and just gave a two sentence overview of the plan–get my intestines feeling better and go one more month to the MRI. Everything past that is dependent on the results. I think I was still indifferent to it all. Being an emotional person, to not feel emotion is weird. Maybe indifference is a slight emotion…or at least triggers one of self-pity. Whatever the case, I had it last night. I could tell: I ate a huge chunk of fudge and watched a movie. Then I just went to bed.

As I was turning off my light, I flipped through some flashcards of verses that my mom made me while in college. One read, “But He knows the way I take; When He has tried me, I shall come forth as gold,” Job 23:10. In one day, Job lost everything: his children, livestock, servants, property, wealth…and yet he still chose to say, “The Lord gave, and the Lord has taken away; blessed be the name of the Lord,” Job 1:21b.

I admit, there are times when it is not easy to say, “Blessed be the name of the Lord,” especially when I feel that things are being taken from me–whether they pertain to my physical body or to my possessions. But remaining indifferent to the road ahead will only make the journey more tiring. Choosing a life of praise is a better path to travel.

“If God sends us on strong paths, we are provided strong shoes.”

Corrie ten Boom

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July 25, 2013 · 1:16 pm

When I Grow Up

Do you remember sitting in elementary school and being asked the question, “What do you want to be when you grow up?” Like an early career fair, sometimes you wrote a paragraph on the topic or discussed it in class when guest speakers came to relate their exciting tales of their specific job positions.

However, to be honest, I don’t ever remember someone specifically asking me this question (besides the classroom setting as a whole) or if I ever gave a specific answer. I have tried to think back to see if I can remember, but I think my career interests back then until the time I reached high school were merely daydreams. I do remember at a young age seeing an orchestra perform on television and that is when I decided I would someday learn to play the flute. When this turned into a reality, I then ventured to dream that I would play in an orchestra…maybe a famous soloist. Well, I did get my solo moments in concert band. We may not have been an orchestra, but I consider performing Georges Bizet’s songs from his opera Carmen a good try (plus it was my favorite solo moment.)

There were other daydreams. I had always wanted to be a singer in a band. I strummed my air guitar or keyboard as I jammed to the music. Being an over dramatic girl, I played the roles of Florence Nightingale or once pretended to be a doctor. I sat on the side of my bed, clip board in the left hand, and stared at my invisible patient. As I went on to explain how the eye is connected to the brain, my invisibility was intruded when my sister (unknown to me) walked in on my consultation. Yes, the eye is connected to the brain, and somehow that was the funniest scientific truth my sister had ever encountered.

It was not until high school that I started to take interest in careers that were more than daydreams. Once I discovered I had interest in the world of business, I filled my schedule with classes such as Accounting I and II, Marketing, computer courses (much has changed in technology since then!) and I jumped at the opportunity to be an editor of our school yearbook. After I graduated, my job at the local florist shop gave me experience in every area, with my favorite of handling the money transactions or office management, such as mail and filing. It came to no surprise then when I started college with an Accounting major in mind. After failing miserably on my mid-term in Accounting II, I realized that the subject was way over my head and focused my emphasis on Management instead.

The funny part about having a degree is that sometimes it pertains nothing to your current career. To make a living while finishing college, I worked as a cashier–even after graduating. I slowly gained responsibility and trained to be a cash officer, which ironically, resembles an accountant’s role minus taxes and payroll. I enjoyed this and for the first time felt I had “a career.”

I was crushed when I felt God calling me to end my career that I loved last October, but I see now that it was His timing as the winter brought all the health battles. By the time March rolled in, I was feeling myself again physically and was becoming bored. So I restarted job searching. I wrote once back in college, “Job hunting is like chasing a white rabbit in the snow.” My sister wrote me back and commented, “That’s a simile.” I don’t have any clever similes up my sleeve this time, but I will say that the search has been frustrating. Not because there are no jobs on the market, but because I am not physically what I was even two months ago and I guess I question what I can actually perform in the world of work.

I know work means many things–there is work where you get paid or you can volunteer your time and work to serve others, both being honorable positions as long as the motive in your heart is pure. Colossians 3:17 says, “And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.” I enjoy the times of volunteering–even if it is just time spent with a friend on a lunch date. But I also have a desire to work and finally admitted I needed help in that process, so I contacted the Bureau of Vocational Rehabilitation. After being approved for their services, I had another meeting with them yesterday to continue the process.

I was still uneasy about the meeting, but over breakfast I did more brainstorming on different areas that I wanted to discuss with the counselor. As I finished my coffee, I set out to finish the last chapter in the devotional book I started about a month ago. God’s timing of words spoken to the heart never cease to amaze me. And so I read:

Out of all history, God chose this time for you to be on earth.

We may think back with regret on who we wish we’d been. We may look forward with fear about who we might (or might not) become. But the only place where we can offer ourselves, where God can use us, is the moment we’re in right now.

Gerth, Holley. You’re Already Amazing. Grand Rapids, MI: Revell, 2012. (180-181).

I may not kn0w my future career, or the timing of it how it will all come together, but I can rest assured…life is more than the aimless chasing of white rabbits in the snow.

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July 23, 2013 · 11:34 pm

Shifting Agendas

I had an agenda for today. I had my various projects all neatly organized, ready to be completed. My day started bright and early with getting my blood drawn for chemo. It has now been three weeks on the chemo treatment and my lab results look good. I still have had no side effects other than in the intestines, which is like a roller coaster ride: some days I feel fantastic and other days not. I am in humble gratitude for your daily prayers.

Shortly after returning home, I made chai and settled down for a time of reading and studying. When I finished, I had a whole new agenda: Think of something you have been neglecting and respond. I cleaned my bathroom and changed my sheets (it is a full workout for me); I refilled Muffy’s water dish; I rested; I enjoyed the evening air; I painted. It was a fantastic day.

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Title: Prism.

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July 21, 2013 · 7:12 pm

The Book: “NF2: Our Journeys”

Question: Where has this year gone? Here we are in July already! Stop and think for a moment on all that you have done in the past six months. If you are like me, you may be wondering how you are going to write your Christmas card this year; thankfully, we still have another six months to figure that out. 🙂

As I reflect, there is a list of major events on my calendar: blood clot, hospital trips, Physical therapy, paintings, a few visits to see grandparents, Spring Break vacation, books read, made new friends, turned another year older, overcoming new physical limitations, visited my sister a few times in Columbus and Megan visited from Colorado…and last but certainly not least: I wrote about my life (limit 1500 words) for this book NF2: Our Journeys.

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January 2, 2o13–a representative from The Children’s Tumor Foundation contacted me through my blog in response to a letter I had sent to the foundation at the end of the previous year. Three days later, she contacted me again. The Children’s Tumor Foundation works alongside a foundation in the UK called, Children With Tumors. There was an opportunity for those with NF2 to participate in this publication (sharing their story)–all started by Jessica Cook who also lives with NF2.

January 9, 2013: Unexpected blood clot.

January 10, 2013: In hospital and I get an email from Jess. This is where it began.

I can count on both hands how many people I have known/met personally that live with either NF1 or NF2. Yes…less than ten people. It was only when I started this blog that my social group of “meeting” people who live with NF2 expanded slightly. When Jess first emailed me, it was about the book. I had no idea over the next five months I would not only get to be part of this amazing opportunity to share my journey of living with NF2, but also make a new friend in the process.

January and February were crazy months of doctor appointments, physical therapy and painting. I had until the end of February to write my story. Not that I procrastinated, but a combination of all taking place those months and just a lack of not knowing what to say, I finally forced myself to sit down a few days before the due date and write. I submitted it the day the rough drafts were due. By this time, Jess and I had been emailing back and forth and she responded to my draft with praise saying that it was what she had expected. That put my nervousness at ease.

My story was edited (spelling, grammar, punctuation) by Jess and a few of her friends and then sent back to me to read and review. I asked my cousin, who is known for her exceptional editing skills, for help on a few sentences and wordings–then satisfied–I sent it back to Jess saying it was final on my end. I picked my “author name” for the introduction and submitted a picture. (Muffy is famous! 🙂 ) By this time, I now had told my family about Jess and the book; I had mentioned it to my doctors in Cincinnati and wrote about Jess to my grandparents. Just talking about it all was exciting!

Getting to know Jess over the past six months has been both encouraging and inspiring. We never started our emails from the past (full life story)…we started right where we were at the moment. Sure, past events have come up in our conversations, such as, physical changes we have endured, emotional battles we have overcome (such as isolation and self-image struggles) and how living with NF2 has broadened our life’s story in ways unimaginable.

Jess’ work in the UK through her social advocacy website and group–Can You Hear Us?–has inspired me to be connected. I have been reading other blogs from people living with NF2 and (though good intentions) need to make a better effort to seek out the Deaf community here. It has also helped me to seek out the possibilities when life hands you disabilities; I believe God placed this book opportunity in front of me for a reason–because these past six months, I have seen my body change and weaken faster than the other nine years of living with the disease combined.

I say it often, but it is the truth: It is only by God’s strength and mercy that I can still function what I am. And He has shown me in abundance the past few months that what I currently struggle with physically is not the end–there is still more to my story waiting to be told. There is always room for hope…

My story: I seems to be a re-occurring phrase over the past few weeks. A few days ago I thought of the hymn “Blessed Assurance.” I think Fanny Crosby wrote what I feel about my story best:

Perfect submission, all is at rest
I in my Savior am happy and blest,
Watching and waiting, looking above,
Filled with His goodness, lost in His love.

This is my story, this is my song,
Praising my Savior, all the day long;
This is my story, this is my song,
Praising my Savior, all the day long.

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To buy a copy of the book:

http://canyouhearus.co.uk/nf2-book/shop/

(Shipping is included in the book price and PayPal converts the total for those ordering from the United States.)

For More Information:

Cook, Jessica (producer). NF2: Our Journeys: A collection of inspirational stories written by people with NF2. Lavenham Suffolk, UK: canyouhearus.co.uk, 2013.

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July 18, 2013 · 11:57 pm

When It’s Hot

We’re experiencing a heat wave here. Even our bike ride yesterday late evening left us in a sweat. So imagine today when we decided to take a stroll at John Bryan State Park around one in the afternoon. Yep…HOT!

The shade from the trees offered a bit of relief but there was nothing more satisfying than a cold drink of water (and I suppose having the AC on full blast too).

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Jeremiah 17:7-8 says, “Blessed is the man who trusts in the Lord, whose trust is the Lord. He is like a tree planted by water, that sends out its roots by the stream, and does not fear when heat comes, for its leaves remain green, and is not anxious in the year of drought, for it does not cease to bear fruit.”

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It has now been two weeks since I started the Sirolimus chemo treatments. Thus far, the only side effects I have had are an increase of problems in the intestines (which also is a combination of tumor pressure) and my mouth is always dry! It feels like I am dehydrated even though I am drinking more. However, I have no mouth sores yet, in which I am very thankful!

When it’s hot, I take a drink of water and remember the life I have been given–through trials, an opportunity for growth; through pain, an opportunity to give thanks; through weariness, an opportunity to rest.

“And the Lord will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail.” Isaiah 58:11

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DSCN2491 Treasure Falls, (Hwy 160, Colorado.) 24×48 canvas. July 2013.

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July 16, 2013 · 5:04 pm

Weekend Rewind…

How much fun can you fill in a weekend?

Let me recount the ways:

It all started when we picked up my sister this past Friday from the airport. Her visit has been anticipated for weeks! We did not give her much time to catch a breath as the first of festivities was Chic Fil A for dinner. Friday, July 12th, marked Chic Fil A’s annual “Cow Appreciation Day” in which you dress like a cow and get free chicken. Last year I had a harder time gathering a herd to come with me, but this year it was the complete opposite.

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After enjoying our meal, we headed back home for dessert: Whoopie pies!!! (Yes, I know…the irony of it but they were already made the day before when we had company for dinner). It was such a nice evening, we went out to the patio. Megan caught fireflies and we had some tea. We helped my mom pick the last of her green beans off the stalks and soon after called it a night.

Saturday started out relaxing. Around lunch we headed over to Beans-n-Cream to see my paintings then went to Stoney Creek Roasters for lunch.

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We ventured to Yellow Springs for a few hours and enjoyed the shops. I started to get tired at this point, but after a LifeWater and fruit snack, I regained some needed energy. When we got home, dinner was served out on the patio and then it was suggested that we spend the rest of the wonderful evening playing put-put golf at Young’s Jersey Dairy.

It was already eight pm when we started out the door for Yellow Springs (again). Right before we got to Young’s, there is a sunflower field. It was too pretty to pass up the opportunity for a few pictures!

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We arrived at Young’s and began our game right at the start of dusk. By the time we were about halfway through the course, it was dark. They have lights on the course but not all were working. Considering my balance already when it is dark plus bending half over to swing my putter and the randomness of put-put course hills, I did quite well. My strategy: Don’t look down, just hit the golf ball. Results: Par in 1. (Just once but it was so cool!) We had a system down in which when it was my turn, whoever had my golf ball would place it on the ground at the starting point. When I made it in the hole, someone would bend over and retrieve it for me. Instead of waiting on the curb, I most often stood on the grass course and just moved my feet if a golf ball came in my direction. I learned that the putter can be a used as a great cane when needed for balance and my family helped when needed too. It was a fun evening, and most of all, exciting to say that “I played put-put golf in the dark.”

Sunday I attended church with my family. There is no interpreter there, so as much as I tried lip-reading, the most I got out of the sermon was from the power point slides. The pastor spoke of God’s faithfulness. I couldn’t help but think of Third Day’s song “Your Love Oh Lord,” which is based on the verses in Psalm 36:

Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.

It was a reminder to me of God’s faithfulness in my life. I was able to think about this more as after lunch I finished a questionnaire for a research study on the social/psychological effects of living with profound hearing loss (or deafness). It was a lengthy endeavor that dug deep into the past–resurfacing memories and emotions…altered dreams. But it was good for me as well–to see the bigger picture since then and how God has brought me to this point in life of living with deafness.

Living with deafness also means when you go to a play (unless you have an interpreter), you don’t hear anything. To celebrate birthday festivities, my older sister and brother-in-law joined us that evening for the La Comedia Dinner and Theatre production of Peter Pan.

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We had an amazing meal (thanks to the waiter who went down and got my plate of food for me), amazing cheesecake (with “fairy dust” on top–aka sprinkles) and enjoyed a phenomenal performance!! We were close enough to see the lines that were attached to Peter Pan and the kids when they flew around the nursery.

Like I said, I could not hear anything. I take that back–I heard soft mumbling, but could not understand anything. Have you ever tried lip-reading at a play? It is not even worth it when you can enjoy watching facial expressions and actions on the floor anyway. I did, however, hear the drums when Princess Tiger Lily and her tribe did their dance. That was my favorite part. 🙂

And so our weekend came to a close–one week over, another about to begin.

What makes a fun-filled weekend so great?
Let me recount the ways: family.

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July 12, 2013 · 3:34 pm

A Fresh Look

I don’t know if this is something hairdressers learn in their training schools, but how they can take a woman who comes in the hair salon looking like she just got out of bed (which I practically did) and have her leave feeling completely fresh is beyond me. This was my morning.

I woke around 8am. To get my day started, I did my physical therapy exercises and then planned to read a little over breakfast. The latter never happened. Mom found me asleep on my exercise mat at 9:15am…late for my chemo dose, I scramble to the kitchen and take my medicines, cram in a bowl of cereal, fill my Tervis of coffee and then head out the door. I get in the car and state, “I think chemo is making me more tired.” I think it is true.

My body changing quickly over the past few weeks has set me in a place where I have been going through insecurities about my physical state, especially the beauty aspect of it. It is easy to hear, “You are beautiful!”, but look in the mirror and see the opposite. Lies also wear you down…they make you tired. I was at this point a few evenings ago. After dinner, I decided to devote my evening just to reading with a cup of peppermint tea to help my sickly-stomach feeling. A few chapters later in my book, I come across this verse:

For God did not give us a spirit of timidity, but a spirit of power, of love, of self-discipline. 2 Timothy 1:7

I went to my bathroom mirror and excitedly wrote the verse with a purple dry erase marker. The verse does not say, “You are beautiful!”, but I think it is implied. Choosing to believe it is now like a fresh look at the day…will I leave empty or satisfied?

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July 9, 2013 · 8:00 am

The end of my boy-band days

Since you are my friends, I will tell you a secret. After all, that is what friends do. I was in love. Yes, seventh grade and I knew I had found love. Every generation seems to have this love or at least the infatuation of the term: boy band. I don’t know much music history, but I am pretty sure this phenomena started before The Beetles.

My era was the Millennium. Yes, that was even the title of the best Backstreet Boys album. (Actually, the only one I ever listened to of their recordings.) Among the many during that time, I focused my obsession on the Christian pop boy band, Plus One. I saved up my allowance and bought their album The Promise on cassette tape. (Yes, cassette tape!!!) I memorized their songs, read the magazine articles, followed their Myspace, and daydreamed endless hours of meeting them in person. I never went to a concert.

Needless to say, by the time I reached high school, I had a little more self-control on my emotions. But I still listened their Christmas album for weeks after my surgery. Jason Perry could sing those high notes on “Oh Holy Night” so perfectly that I had no choice but to hit the back button and listen to it again.

Like all boy bands, there comes a day when they are no more. Your favorite decides to part their ways and seek other directions, much to the tears of the fans. I kept my copies of the cd’s but only listened to them here and there when cleaning my room or doing a workout. I never touched the cd’s in college. I hid my secret; only my RA and roommate knew as the song “Written on my Heart” came on over K-Love on our way to church. Now I am in the final stage: my cd’s are in the thrift store pile. I said goodbye to those cute little faces I had once been in love with–and that is that. (Ok, secret: I kept the cassette tape, only because it is a cassette tape. It is like an antique of my childhood days.)

– – –

I am not just saying goodbye to my boy band days. It has come to the point where listening to music is more frustrating (if I can even hear it) than it is enjoyable. But unlike the boy band tears, I am surprisingly unemotional about this predicament. Even more surprising that I found pure joy in deciding who would receive the last of my cd’s…to whom I bequeath the classics and oldies. (Secret: I kept one cd–Nancy Honeytree. She was the first of music I remember listening to as a child. I went to a concert and sang her songs in church. It is now added to my “Special Box” with the cassette tape.)

Sure, there are things about music that I miss being able to follow–like watching movies and hearing the soundtrack; jamming to the “oldies” in my car (but on long road trips, I substitute for a book in its place, read from the backseat and do just fine); or my favorite of falling asleep to the sounds of music. Honest thoughts here: this may all sound sad, terrible, or unfair–yes, it is all those things–but that is not what I feel. I am satisfied. I was brought to this point slowly. I think the change first started when I painted the simple bird for my dad’s birthday three years ago. Music is not out of my life entirely–I may not be able to physically hear it with my ears, but it is in me. It always has been. Always will be.

Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything.

~Plato

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July 5, 2013 · 11:59 pm

The Next Chapter

Rainy days have strange effects on me. Some days it makes me groggy as I feel it in my body…especially my right hand. That was my yesterday. I even smashed my index finger that morning within the umbrella as I was closing it; I never felt a thing–just a small pinch but it was only when I looked down to see why the umbrella was not closing did I see my finger jammed.

Another rainy/cloudy day today, but completely opposite. Today was my motivation day. I went supply shopping: paints, paintbrushes, canvases and various add-ons for my upcoming paintings. Yellow Spring’s “Art on the Lawn” festival is only a month away. (More to come on that topic!)

Today I was focused on the broad spectrum of details and errands that needed to get done, even though my right hand seems a bit swollen and my arm is tense. Like an equation, I am not always that full of energy. Yesterday I just focused my attention on one thing at a time. My favorite being a book. I was achy with sick feelings in my intestines, so I made a cup of Chamomile tea and picked up where I left off in Through Gates of Splendor, by Elisabeth Elliot. I was determined to finish the last few chapters.

Growing up, we knew the story of these five missionaries. Nate Saint, Roger Youderian, Ed McCully, Pete Fleming, and Jim Elliot who all followed God’s calling to show and communicate the love of Christ to those tribes in Ecuador that otherwise had no contact with the outside world. These men were at the time, the same age range that I am right now. I sat thinking of this…how these men gave everything for the Gospel. They were taking part of God’s plan to reach the nations, ultimately never seeing the fruit of their labor this side of heaven.

A few months after the deaths of these men, their story was recorded. The first copy of Elisabeth’s book was published in 1956. The edition I pulled off my parent’s bookshelf was the 25th anniversary edition, 1981. As I read the Epilogue II, I came across this conversation that Elisabeth had with Corrie Ten B0om:

“Sometimes,” she told me, “I have said, ‘L0rd, I must have something fresh. I cannot go on telling the old story.’ But the Lord said to me, ‘This is the story I gave you. You tell that one.'” So Corrie encouraged me to go on telling mine. (pg. 266)

And this encouraged me. I set out to write blog entries and feel like I am sharing the same story–repetitious. I want something new. But this is my story. and God wants me to tell it. So a new chapter to my story happened this week:

Tuesday evening I started my first dose of the chemo treatment, Sirolimus.  I take it every 12 hours. I have to be consistent with the time, so I chose to take it around the same time I take my other medicines.  So far I have had no side effects.

The chemo itself is very different from the other chemo treatments I have taken in the past. It does not feel like a chemo. Of course this is the first time I have had to keep medicine in the refrigerator…that could be part of it. The recommendation for taking the solution is to put it in a small 2 oz or so of orange juice stirring it a lot, drinking it and then drinking water or something afterwards. If it tastes the way Marcia says it smells, then I am double blessed as I can’t smell it nor does it change taste of my orange juice. Tonight I thought I would try the other recommendation for taking the medicine: in chocolate syrup. It was disgusting. I think I will just plan on drinking lots of orange juice for a while.

However, this chemo can cause mouth sores and so I have been given mouth care instructions to help prevent or treat these sores. First, a reward: I get an excuse to eat pudding, ice cream, applesauce, yogurt, ice cubes or pop sickles before and/or after as the cold and smooth will help prevent mouth sores. I have always been one for flossing and brushing my teeth after meals so that has not been a problem. They did give me a “recipe” for making my own mouthwash as I am no longer allowed to use store-bought ones due to the alcohol content used…even if it says “Alcohol free,” I am not chancing it.

My diet is much the same as it was before, except now I am a bit more cautious on going and getting that white mocha, as I am to watch my sugar intake. God must still want me to learn self-control. There are a few others on the list that I need to watch–eating red meats (which I don’t do often anyway), watch the different fats in dairy products and limit egg yolks to 3 a week; egg whites are fine. They warn against eating spicy foods as they can cause sores. I need to drink lots of cold fluids, eat lots of fresh fruits and vegetables, and get enough fiber. Even if I wasn’t taking this chemo, it is good eating habits to follow.

I am thankful right now that my body has been tolerating the treatments and will just have to take it one day at a time. I will have labs done every week and my first clinic visit to Children’s is at the end of the month. Do I think chemo is working? I don’t even think I can honestly answer that. My body changes from day-to-day. I note more aches or strains, more numbness or bad balance. There are always things at the back of my mind or new physical challenges to overcome.

My story is not yet complete. I know this. Some chapters seem to fly and others seem to drag on endlessly. Some pages make me laugh, some leave me in suspense and others make me cry. Like reading any book, you have to turn the page at some point to continue reading. If I focus on only one page full of th0se physical sufferings, I will never get to the ending or get to share the new things learned with you. I might just find out that the best part is only a few pages over.

*Elliot, Elizabeth. Through Gates of Splendor. Wheaton, Illinois: Living Books (Tyndale House Publishers), 1981.

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