June 28, 2013 · 6:07 pm

It’s like lab work…Part I

If you have ever had important medicines where labs are required before you can proceed with anything medical then this post would be like the lab work. Maybe I spent too many hours in doctor appointments yesterday or maybe it is because I have somewhat neglected to keep you all informed of current physical conditions, but to understand yesterday and the current future course of actions then you need to understand the lab work of what has brought me to this point.

So here it is: Part I

I wrote at the beginning of the month about my May MRI/hearing test results, a list of things physically changing in my body and the fact that I had an option for a chemo treatment. Over the course of the month, here is an inside scoop of a few important decisions and observations that lead up to yesterday’s appointments.

First, it was no easy decision about the chemo treatments. Yes, I had an absolute peace that doctor’s appointment, but when I returned home, I was forced to face reality and the fear of the reality that my body is indeed winding down faster than my hopes, I lost sight of the peace that God was in complete control. I felt like this heavy cloud was over me..like the fear that I would make a wrong decision. I was just confused even though I was seeking God with my whole heart.

Do what the Lord bids you, where he bids you, as he bids you, as long as he bids you, and do it at once. —C.H. Spurgeon

Between different songs coming to mind (Michael W. Smith’s “Someday” (Set the Children Free), passages of Scripture (Psalm 90, emphasis verse 12), talking with my parents and the C.H. Spurgeon’s quote, I came to the decision that I would start the chemo treatments. Not implying that God has given me this time to “be sick,” but that I have the time right now to try. I knew deep inside that if I got to the next MRI without at least trying, then I would hold guilt on myself (even though I shouldn’t). I also had to come to realize that this is still something that is purely trial run. The hope is that it stops tumor growth, but it could not work any at all too. Neither myself or my doctors have any control of that.

My decision made, I emailed my doctors and we started communicating about different things. I also told them that I would not want to start anything until after my parents returned from their trip to Colorado. That leads us to this week.

Like any other appointment, I have to evaluate myself and make a list of any new physical changes noticed or questions I may have. Even though I was just at Children’s three weeks ago, I had a list of new physical changes which is a bit saddening, because it means that the something is still going on inside my brain area. Because I won’t have an MRI for another 2 months, I can’t assume tumors are growing but they are obviously putting pressure or something as my body is showing change, especially on the right side.

Changes I have noticed have been complete numbness in my right hand and up my arm. (I will blog more on my right arm later). There has also been an increase of pressure in my neck, so I feel my posture has decreased again even with keeping up with my PT exercises. I also have had an increase of pressure in the lower spine. I can feel it as well as I notice it in the way that I stand and the added pressure on my intestines. My balance seems about the same in normal walking situations but may have a bit more troubles as the most frustrating recent change being losing hearing in my right ear. Usually a few small decibel is not that noticeable, but I just got my hearing aid adjusted two weeks ago and already noticed that I was having a hard time hearing. And even if I did not notice, others had because the first thing a few friends and my doctor pointed out was my voice being strained (I do this when I can’t “hear” myself speak.)

As all this came together, I took my list and my questions to my doctor appointment yesterday. My lab work on my behalf was complete, but I was in for more when I got there…

Continues in Part II.

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June 24, 2013 · 6:55 pm

Team: We Walk with Mel!

Dear Family and Friends,

Galatians 6:2 says, “Bear one another’s burdens…” and yesterday was another example of how you reflect this verse in my life as I walk with NF2. DSCN2250

I was never expecting to raise a lot of money, but through your generosity, I was able to help contribute over $800 to the NF Walk cause: research. As a whole, the Cincinnati NF Walk raised a few hundred d0llars over their goal of $25,000!!!

Maybe I have not talked about it as much as I should (because to be honest, I had been putting myself in denial of reality), but it is no secret that I am running out of options for treatments. Even the steroid treatments I am currently on will not last forever…only God knows the timing of it all. So yesterday when my sister asked why I was walking, I told her I was walking to help raise money for research and then after a pause I said, “And just because I can.”

I can walk! And I think I should get into a praise habit and thank God every morning when I get out of bed, because it is only through God’s strength that I still can. Yesterday was not an easy walk. In fact, it was much more physically enduring than the Women’s Center Walk last month or even my fall off the treadmill a few days ago, but the truth of the day: I was there, because I can walk!

But even though I can still walk, I would have never made it through the 2-mile trek alone. I consider you all on my “team,” but I know everyone who wanted to be there could not all be there and thank you for your prayers from afar. I did have a team with me though: (L to R) my younger sister, my aunt and uncle from NC, and my oldest sister and brother-in-law. Together they helped make my day both a fun one and a successful one.

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As we got started, we were first welcomed by Storm Troopers and bounty hunter from Star Wars. Being a fan, I thought it was hilarious they were there acting like crowd control and took a picture with them.

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As you can see, there was quite a good turnout of walkers. Sadly though, we did not get to talk to hardly anyone else there, because by the time I changed my tee shirt and we did our picture with the signs, the walk was about to begin. We were able to talk to one family that had NF1, only for a few minutes. They were very nice. DSCN2249

Before the walk officially began, they wanted a big group picture–which should be uploaded on the CTF website within a few weeks. So, up this huge hill we went and as long as you could see the lady with the camera she could see you. Then the walk started (thank you David and Uncle Jim for helping me get off the hill!) 1058790_813723071694_1175541122_n DSCN2253 DSCN2254

We stopped often so I could take a drink and catch my breath. It was a lovely day but a toasty one!! By the time we got half way, I felt so tired (due to heat, not enough water intake and not a great breakfast to jumpstart my day)…that and my left foot was achy! Combination of bad balance and the path tilting slightly to the right, my left foot was feeling the weight!

The NF Walk took place at the Sharon Woods Lakeside Lodge which had at the half way point an area with bathrooms and picnic tables in a shaded area. This is probably why I came in last, because we stopped there and I was able to eat an apple, which greatly boosted my energy to finish no matter how bad my left foot felt. DSCN2258 DSCN2256

There did come a certain point when I started to get really wobbly even with my walking sticks, just from being fatigue. I also find that I could not get much conversation in as turning my head to the side while walking makes me wobble too. So, my aunt suggested I forgo the rod and staff and use their arms! It helped me forget about my feet and I got to get some chatting time in too (between catching my breath!) 1060338_813741854054_844995300_n

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And I finished, even if a bit unstable on my feet! 🙂

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Instead of joining the picnic, my aunt and uncle treated us to a delicious lunch at a local deli. 🙂 They left afterwards to head home and the rest of us made our way back northward, stopping in Lebanon for ice cream at a place called Double Dip. If you are ever in the area, it is worth your dessert appetite.

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…

I just wanted to say thank you again…from the bottom of my heart for the love, support and prayers that you have shown me over the past ten years and this week in raising funds on my behalf for NF research.

God has richly blessed me with the abundance of family and friends and I can truly say, “I thank my God in all my remembrance of you, always in every prayer of mine for you all making my prayer with joy, because of your partnership in the gospel from the first day until now.” (Philippians 1:3-5)

~ Mel

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June 21, 2013 · 12:44 am

Thursday’s Terrible Tumble

Two are better than one, because they have a good return for their labor:
If either of them falls down, one can help the other up.
But pity anyone who falls and has no one to help them up.

Ecclesiastes 4:9-10

I wouldn’t call it ironic, but yes, I did read this passage of Scripture in the early morning hours with my cup of coffee.

The day seemed to start so typical in routine. Awake by 7am-ish, make a cup of coffee, feed Muffy breakfast, watch a deer eat the farmer’s soy beans, eat my own breakfast and morning readings. This morning, my intent was to get to the gym for an exercise before coming home to finish a few lingering projects. I should stop planning my days.

I leave a note for my sister that I headed to the gym with a salutation, “Be back soon, xo.” I had used the bike yesterday, so today I wanted to walk two miles in preparation for Sunday’s NF Walk in Cincinnati in corporation with raising awareness and funds for research with the Children’s Tumor Foundation. We have known about this for months, but I was not fully interested in taking part of the event until I participated in the Miami Valley Women’s Center, “Walk 4 Life,” in May. Shortly after this, I emailed my family to see if they were interested still in the idea, as I would only be I interested if someone walked with me. I would not walk again by myself. Although my parents would be out-of-town that day, my sisters committed to the walk.

So, taking my momentum of excitement to the gym, I decide I can walk the two miles better in a straight line than 16 times in a circle around the indoor track. I go for a treadmill. My thoughts betrayed me.

I was doing just fine. I actually have no idea what went wrong. I am a symmetric person (the accountant in me to balance like an equation), and when I exercise it is no different. I warm up for five minutes then do a faster walk for ten or twenty minutes then cool down for five minutes. I was walking slower than an average person’s stride for the first five minutes, clutching the handle with both hands. I barely notch up the speed to get my legs moving and I don’t even think it was but a few minutes later that I just came down.

It was slow motion: my nose planted in the middle of the handle bar and I try to pick myself up and regain balance but then my feet just buckle from underneath me and down I go…hitting my mouth on the way while belly flopping on the moving tack. I very ungracefully glide off and somehow landed on the floor sitting up cross-legged. I had lost my glasses on the way down so I can’t see and hold my nose and say, “Ow. That hurt.” Then I realize I am bleeding from my nose and considering my fall plus blood thinner pills–well, the equation was very messy and did not balance.

Within seconds I had at least from what I remember, four people at my side. One gave me towels for my nose, another had my glasses and two finally helped me to my feet when I was ready. The lady there helped me to the bathroom to wash my hands and arms and then when I was a bit clean (still bloody nose), I sat out at the tables and they did paperwork. They were very concerned and helped me call my sister (we woke her up) and she came to pick me up.

The rest of the day goes from there…while I sit on the couch with ice on my already blackish-blue nose, Marcia is making all the necessary phone calls in order to figure out what to do next. My doctors at Children’s wanted a CAT scan of the nose and neck to ensure nothing was broken but most importantly the bleeding factor, even though I was not showing any signs of something drastic. We ended up leaving twenty minutes later for the ER and spent the next few hours there. Thankfully, my nose is not broken and nothing wrong otherwise but a low INR count.

The point of my story is not necessarily my poor decision to decide to walk on a treadmill with weak legs and ankles (and not attaching the safety stop clip to myself either), but that I would have not made it through the day without the kindness and help from those around me or those on the other end of the phone with my sister. Even if I did not have NF2, I still believe that after a tumble like that, I would have required a helping hand.

This is why I am excited to be part of the NF Walk on Sunday–because I can be a helping hand in bringing hope to others just as others have done for me.

We can’t do everything, but can we do anything more valuable than invest ourselves in another? Elisabeth Elliot

For more information:

My team, “We walk with Mel!”:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=1044487&supId=373310036

NF Walk in Cincinnati: http://ctf.kintera.org/faf/home/default.asp?ievent=1044487&lis=1&kntae1044487=AC40628269E94A3193B4E32ACD2CA733

The Children’s Tumor Foundation: http://www.ctf.org/

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June 16, 2013 · 8:25 pm

Car Lessons 101

Most of What I learned about cars, I learned from my Dad. He taught me how to change a flat tire and explained the importance of having your tires rotated and how to check my oil. He taught me how to drive in the mountains, merge into traffic on a freeway, fill my gas tank at the pump and explained insurance details tucked away in the glove compartment. On the day I bought my own car, Dad was with me (as well as Mom) to make sure the fair prices were being put on the table before I signed the paperwork. On the way back to my apartment, he even bought me new needed windshield wipers and showed me how to replace them. 🙂

Both Dad and I like cars: he likes to work on them and take pictures at old car shows. I just like to drive my car or ride along in any other…given (1) I am in the passenger seat and can make conversation or (2) I am in the backseat and can read. Road trips have special memories, especially the trips we took when I was a kid. Because I did not get car sick, me and my oldest sister were sentenced to the very back seats of the suburban which entitled us to no leg room and getting snacks whenever someone up front was hungry. We had no windows that opened, so our view was always tinted and when the windows from up front were open, we got all the air (which got annoying and cold quite fast!) The speakers for the music were all the way by the back door, so I was constantly asking for the music to be turned up…then Dad would jam to his oldies (which I did not have an appreciation f0r at the time) and I would reverse my request for the music to be turned down. Eventually, Mom would just turn off the music and say we should just talk with no music.

So today Dad, I thought of you when I found this picture:

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I don’t know if it was our first family trip to the Garden of the Gods in Colorado Springs, but I do know that this was the first picture I ever took and you just happen to be the one posing (actually I remember asking to take your picture). Today I won’t ask you to turn down the music, but might just find myself singing along. Happy Father’s Day!

I was lost and blind then a friend of mine
Came and took me by the hand.
And he led me to his kingdom
That was in another land.
Now my life is changed, it’s rearranged
When I think of my past I feel so strange.
Wowie, zowie, well He saved my soul.
He’s the rock that doesn’t roll.
—
He’s the rock that doesn’t roll.
He’s the rock that doesn’t roll.
He’s good for the body and great for the soul.
He’s the rock that doesn’t roll.
—
I was all alone like a rolling stone,
I was going nowhere fast.
I was on the road so far from home
When the future touched my past.
Now I feel so blessed ’cause He gave me a rest
And I finally feel like I’ve passed the test.
I wanna be like Him, yes that’s my goal
Like a rock that doesn’t roll
Larry Norman. “The Rock that Doesn’t Roll.” In Another Land. Solid Rock Records: 1975, 1993.

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June 15, 2013 · 5:23 pm

Nature’s Night Lights

Random fact #0613: Mel sleeps with a nightlight. Two actually. One in my main room off on the side left wall and another in the bathroom which I can see from my bed. I am not afraid of the dark–I just don’t like the dark due to bad balance. My night lights serve as a safety purpose, without them, I fall.

I will leave you to imagine how I look when I walk in the dark. Darkness is the reason why I do not especially care for winter months. In the summer, I can still be outside around 9pm and be fine. When it finally gets dark, it is best that I have assistance…usually an arm from a person walking beside me or if I go out on the back patio to feed Muffy his bed-time snack, I initially hold on to the rail by the door to balance then take it slow to a chair (plus the patio lights are on and I stay in the lighted area).

I find it is easiest to wait for Muffy to finish eating by just sitting. Thus, I sat last night with no thoughts–just staring into the darkness ahead of me. Then it happened…Fireflies!!! I have been waiting for this moment since the start of Spring! In my mind, it is now the official start of Summer!!

I remember fireflies when we lived in Toledo until I was six. After the move to Colorado, our days of seeing fireflies were limited to when we took family vacations back out east to visit family and friends. Once when visiting friends near Chicago, we were taking a walk and fireflies came out. All of a sudden, gleeful cries and the pursuit of catching them took place…never mind the fact that we were teenagers. I still find it fun to catch fireflies and last night in my excitement, I banged on the window and yelled, “I just saw a firefly!!” I even held up my arms like a victory field goal, which probably looked and sounded more like George Bailey wishing Mr. Potter a “Merry Christmas” in It’s a Wonderful Life.

Although Colorado does not have fireflies, I don’t think that it ever bugged me. (Bugged: haha, Mel humor!!) I know this because God provided a different form of fireflies: nature’s fireflies. Best part was that I did not have to wait for certain seasons to see them. From our backyard, in complete darkness, the vastness of the evening sky and the twinkling of unfathomable numbers of stars was far greater than trying to catch fireflies.

A few months ago at dinner, I told my mom that I was having a hard time reading Holley Gerth’s blog posts, because all this talk about having God-sized dreams left me feeling like I was sitting in a closet with the lights turned off. “I don’t have any God-sized dreams,” I said. Truth…I still don’t–at least I do not recognize them at the time. Not only my Mom, but countless others have kindly reminded me that I don’t have to do big things to be used by God. Even the tiniest star in the sky is still visible, just because it shines–and it shines even brighter when surrounded by others doing the same.

“Shine like stars across the land.” Philippians 2:15b (The Voice)

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June 11, 2013 · 11:57 pm

Being a Kid…

When we sisters were little, we liked to pretend–anything from making “houses” out of oversized cardboard boxes to playing in make-shift tents out of blankets between our beds or chairs from the kitchen. We also loved to play “spy” in which we would draw maps of our house and set out a course to spy on people in various rooms…which usually was just my Mom in the kitchen who would pretend not to see us. Yes, countless hours of sister fun (and the bickering that seems inevitable in the equation.)

One thing we did occasionally was pretend to sign when entering the grocery store. We would decide before-hand as we exited the car who would be “deaf.” Coming from a small farm town in which everyone knows everyone, this probably seemed like comedy to the onlookers at the store, because everyone knew we were a hearing family..but being a kid that thought never crossed my mind.

My experience with knowing about sign language came at an early age. In the second grade, there was a girl who was Deaf in the classroom next to ours. We often joined classes together for games, crafts, or different lessons so I first saw an interpreter at that time. Not knowing any signs, I would at least try to communicate to the girl at recess by making up motions and pointing to the merry-go-round to see if she wanted to play. If yes, then a smile and the sign for “yes” or a nod of the head and if no, then she would sign to me then just point where she wanted to play. She left after that year to attend the School for the Blind and Deaf. But it was the beginning of sign language for me.

I leaned how to sign “The Pledge of Allegiance” in elementary school, but signing otherwise did not take great interest in me until my oldest sister came back from her junior high church camp and taught me how to sign “Shout to the Lord.” The first summer church camp I attended as a “going into the 7th grade” camper had different afternoon sessions you could choose for activities. I am not entirely sure (ok, NOT SURE AT ALL) where I thought the idea of playing dodge ball would be a great opportunity for fun…because as it turned out, I was the only girl (go figure). I could have done the sign language session–what a poor decision on my part–however, I did have a tiny bit of fun at dodgeball. I just made it a point to get hit, then did nothing until the next game started. Great strategy! And this did not stop me from learning the sign language song either–since all my friends had taken that session and practiced the entire way home, I picked up on it really fast. That was the year I learned Mercy Me’s hit, “I Can Only Imagine.”

It was my freshman year of high school that I desired to learn more sign language. Switching church camps meant there was no longer any formal instruction for learning songs, so I set out to do it on my own. One of the leaders for our youth group was majoring in ASL, so she helped me get a used textbook from the college bookstore. Best $20 ever spent. The dictionary is massive…I still own it. I did acquire another book later in high school and refer to that book most often. (And just for the record–library book sales can be a source of hidden treasures. Yep, believe it–but I just attained my final sign language dictionary for 50 cents!!!)

My signing story is most likely familiar from this point on in life–high school enabled me to be part of leading worship at church whether in the praise band playing bass guitar or signing songs. I took a community ASL class with my Dad and in college I took an ASL 1 course the summer before I started using interpreters full-time at school.

One part of my past history with signing that always brought me great joy was leading the “Sing and Play” at Vacation Bible School. This beginning part of the kids time at VBS was where we sang songs, introduce the Bible buddy/point of the day and perform a little skit. (My sister and I did an epic skit of a horse stampede in which she ran on stage to save me, using that “save a person action” like the movies or commercials…where you run in at full speed and push the person over to safety at the same time you are holding them. We had the kids on the edge of their seats. 🙂 Favorite VBS memory!)

I knew it would be my last year leading this part of VBS, because (1) the next summer I had plans that I would move to Denver with roommates to work and finish school and (2) I could no longer follow words with songs. I have not helped with a VBS since then until this year, although I did volunteer with a kids ministry in Downtown Denver until the move to OH. In early May, when my church announced this year’s VBS dates, I signed up to help serve in the kitchen. I figured this was easiest to help. I knew I would not be a crew leader, due to the fact I can’t hear and my physical body is not in the best condition. In the few days before, plans changed and I was all set to help in the pre-school as a helper for a crew leader. I was told I would just be an extra set of eyes. Seemed reasonable and something I could do.

My group learned a few valuable lessons the first day which has made the past two days since then flow more smoothly:

Mel does not sit on the floor as she can’t stand up without assistance or somewhat falling over; I now am entitled to a chair. 🙂

Mel is not good at holding onto her snacks–if they fall on the cement then it is not edible (today it was my whole bowl of trail mix).

Mel’s crew leader used to be an interpreter and signs everything…which meant the first day, all the five groups in our specific pre-school animal category were exposed to sign language/interpreter action. For my own group, lots of questions were asked…being a kid, they are curious, but the moment they know the answer to “Why?”, life goes on. Sweet days of innocence.

As for me, I got home and wondered what I was thinking when I said yes to helping in pre-school!?! I felt out-of-place, as well as a huge distraction, because I needed extra help and attention. I finally came to the conclusion that I am not a distraction but an opportunity for these kids to see that we are all made different and that we can help each other. VBS week is nearing an end and I know this is the last of my days working with children, but I cherish them because the eyes of a five-year old don’t see a helper with physical problems–they see Mel. And it leaves me with a longing to be like a kid again…

Matthew 19:14, “Let the little children come to Me; do not get in their way. For the kingdom of heaven belongs to children like these.”

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June 7, 2013 · 9:32 pm

Hearing All into One Ear

You have most likely heard the expression, “In one ear, out the other.” It may not be official living proof, but soon I will get to say that literally speaking (not figurative)…with a more emphasis, “In one ear, transfer to another.” 🙂

Last Friday I went to get my right hearing aid adjusted. Because it is now my only ear I hear from, I needed a bit higher frequency for normal routine living. We did not go overboard on volume, but enough to where I hear voices better, including my own. The minute I started talking in a normal tone of voice was when we knew the volume was just right.

There was also exciting news! Instead of a cochlear implant on the left side, I am now anticipating the arrival of my new Phonak Cros. Phonak is the brand name of my hearing aids as well as other products such as the Cros. The Phonak Cros is a device that looks similar to a hearing aid, but smaller and has a completely different function. cros_bte_single

hearingadvisor.co.uk

This is the Phonak Cros. However, I opted for a light mocha brown instead of blue. It is relatively smaller in size than my hearing aid. There won’t be any need for an ear mold as what you see here goes in my ear. How does it work? Well, since I have no hearing on the left side, I miss cues–mostly dealing with people talking or someone approaching me. The Cros has nothing in part on my left hearing. I will still hear nothing out of this ear even though I wear the device. What happens is that the microphone picks up on the sound (like someone saying “Hello”) and will transfer the noise to my right hearing aid.

If this does not make sense, just know that my right ear will have double time work! It will take time to get accustomed to the direction in which the sound comes; however, I am excited! I am excited to see how it works at the dinner table, in my shopping trips, listening to music in my car, Muffy meowing…it will be interesting!

When you depend on technology for physical needs, it can get frustrating. It is never a surprise to me anymore when in the middle of an important conversation, my hearing aid battery just dies leaving me to transition to full lip-reading. But for all the times of tears, hearing aid appointments, and cost of batteries (I might add), there are blessings. Not only will this new arrangement (in time) help me maintain a bit of social grace, but also the Cros will be linked to my right hearing aid, as was my left hearing aid before, so where I can switch the settings and volume with my left hand as it is my stronger hand.

God is my stronger hand. As I learn to depend on Him daily, I see there is still so much to learn. “Call to me and I will answer you, and will tell you great and hidden things that you have not known,” Jeremiah 33:3. Like the Phonak Cros, God links together the my disabilities with His abilities and carries them all in His hand. It does not stop my life from tears, doctor appointments, and the cost of following God into the unknown but when I do, there are blessings.

I am still learning this dependency–

…It’s amazing
How I forget
Can’t live my life
For lack of it
But the Light of day
I’ve always known
It’s in my heart
I’m not alone

Speak to me
Tell me all the things I need to know
I want to hear You now
Can You speak to me
I’ve opened up Your Word to free me
I want to hear You now

Make Your wisdom clear
The words I hold so dear
Bring the light into my dark
I hide them inside my heart…

*Audio Adrenaline. “Speak to Me.” Lift. 2001.

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June 4, 2013 · 5:36 pm

I Breathe

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“Today” by Iona

– – –

Today the grass is greener

than I have ever seen

Today the sky is bluer

than it has ever been

And Today my heart is breathing

like I’ve never felt it beat

And Today flowers are growing

from the ground beneath my feet

– – –

Today my hope is stronger

and the visions clearer

To walk in Love eternal

the path that takes me nearer

And to You the music’s playing

like it has never done

And to You my feet are dancing

underneath the sun

– – –

In You I Live

In You I Live

In You I Live

and breathe

This song is exactly opposite of what I actually felt this morning. The day is indeed beautiful with the sky bluer, the grass greener and flowers growing around the back patio. And inside myself I felt distant from this beauty of the day. I did not feel like dancing, making music in praise. I felt heavy…burdened. Sorrow instead of joy in the morning.

Last night, I laid it all out. In my conversation with my dad, we discussed everything that I could think of at the moment…this decision about the chemo treatments is not just the treatments. I realized it goes so much deeper than that…job, living, safety factors as my body physically fades, side effects of medicines, what happens after I can no longer be on certain medicines, independence and dependence decisions, current pains, current emotions, hopes that seem lost…

In a day, I don’t think these things in this much depth. But because I fell asleep last night still questioning…today, the heaviness lingered. I started making my morning coffee and asked God, “What happened to my joy?” I remembered a verse where it talks about our sorrow turning to joy–so I set out to find it. I should have known it was in the book of Jeremiah. In chapter 29, God assures the Israelites that He has a plan for their future, one that prospers and brings hope (29:11).

This morning I felt too that I was in bondage…exile from former things, out of my comfort and asking God, “Where are You? Why am I here in this place suffering like this? And what is going to happen in my future?” Seems last night that is all that happened–I just asked a lot of questions. My earthly father put his arm around my shoulder as I wept. He could only answer my questions honestly saying, “I don’t know.” But my Heavenly Father says, “This may not make sense at the moment. I know your pain, sorrow, confusion. Seek me and trust me. I love you and have the perfect plan for you. Your sorrow will soon turn to joy.”

Then I found my verse that I was seeking–Jeremiah 31:12-14 (The Voice):

“The redeemed will return home and shout for joy from the top of Mount Zion; they will shine with the sheer goodness of the Eternal— The harvests of grain, wine, and oil; the healthy flocks and herds. Their lives will be like a lush, well-watered garden. From that day on, they will never know sorrow. Young women will dance for joy; young men will join them, old ones too. For I will turn their mourning into joy. I will comfort My people and replace their sorrow with gladness. From the overflow of sacrifices, I will satisfy My priests; All My people will feast on My goodness.”

My own visions are unclear, but seeing through eyes of faith gives freedom from this sorrow–maybe not physically, but in my soul. I learn to live. And I breathe.

We have the idea that God is going to do some exceptional thing— that He is preparing and equipping us for some extraordinary work in the future. But as we grow in His grace we find that God is glorifying Himself here and now, at this very moment. If we have God’s assurance behind us, the most amazing strength becomes ours, and we learn to sing, glorifying Him even in the ordinary days and ways of life.

~Oswald Chambers, My Utmost for His Highest, June 4.

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June 2, 2013 · 11:26 pm

Thursday’s doctor visits.

And it happened. May is now officially over and June has just begun. Crazy to think!

So I thought I would just recap from where I left off…Wednesday evening:

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest of the year, but as I gather my list of inefficiencies, I remember that when I can’t…He can.

I wake Thursday morning around my typical time, 6:10 a.m. This typical morning time started about a month ago…steroids can cause change in sleeping patterns. Lucky me, I get morning shifts where I see the sun come up and drink fresh cups of coffee at breakfast.

Thursday was no exception except our coffee was on the go, because we had to get down to Cincinnati for my doctor appointments. The day turned out to be relatively fast appointments and we even made it home before 4:30 p.m. which is a record breaker!

I came prepared with my list of questions and observations of things over the past three months. The doctors said I am doing well for the condition that my body is living. And considering the results of my MRI, that prior sentence is an answer to many prayers daily on my behalf.

The MRI of the spine showed stable, which is not what I was expecting, because it usually has more liquid in the tumor at the base of the neck growing in the spine. I asked if there was more fluid in this tumor, but the measurements did not show so.

The MRI of the brain is what surprised me. It showed tumor growth in the meninges areas, including the 5th nerve, etc. I asked out of curiosity if my doctor had a count of how many tumors were growing. He did not know, but estimated about 80% of the tumors in this meninges area were growing; a few as much as 3-5mm and that is the most growth I have had yet. The tumor on the left acoustic nerve has also grown. When I mentioned that I had more ringing and my hearing test results from last week, it made more sense of why my hearing has decreased in that ear rapidly over the past two months.
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Because I have had a lot of new side effects, I asked if the tumors from the brain are the ones effecting the rest of my body. It seemed strange to me that this could be probable. I guess I don’t know enough about the brain. Anyway, my doctor said that between the tumors in the brain, the one in my neck and all the ones in the spine down lower at the abdomen–it is extremely difficult to decipher which tumors are causing the problems.
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My initial thought was that they would increase my steroids, but because I have been experiencing certain side effects, they are keeping me on the same dosage I had been taking already. The steroids are just to help keep the pressure from the tumors down, but don’t have any control on the tumors as I also have thought this whole time.
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Right now, I do have a chemo treatment option. It is also the last option at the moment that I have as far as studied/approved treatments. It is an oral treatment, so I would take it by pill. We went over the possible side effects again. They seem tolerable if I would get any but most effects deal with the blood cell counts and high cholesterol. I could also get a rash, swelling in the face, sores in the mouth (things like this.)
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Thursday morning, my reading in Oswald Chamber’s My Utmost for His Highest talked about complete trust in Jesus: “Jesus Christ demands that you risk everything you hold on to or believe through common sense, and leap by faith into what He says.” I didn’t make my decision on this chemo treatment on Thursday. In fact, I still have to pray more about it and make sure that this is what God wants me to do. But one thing is for certain–I feel God had prepared me for that day, the news, the treatment possibility. I had a peace that I normally don’t feel at doctor appointments.
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I can’t say that over the weekend the peace remained as strong as what I felt on Thursday. There were times of doubt, fear of the unknown, hard questions to ask myself. But when the time comes for my decision, I want to know the fullness of His peace like I felt on Thursday. The peace that passes all understanding and say, “Whatever my lot, thou hast taught me to say, ‘It is well! It is well with my soul!'” (Horacio G. Spafford, It is Well with My Soul. 1873.)

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May 29, 2013 · 5:16 pm

List of my insufficiencies

Kermit. Miss Piggy. Animal. Rowlf the Dog. Beaker. Fozzy Bear. The Electric Mayhem.  Statler and Waldorf. Rizzo the Rat. The Swedish Chef. (Just to name a few.) If you have ever seen any of the Muppet movies or The Muppet Show episodes, I am sure you can envision the characters, the voices, the humor. And sometimes God uses the strangest Muppet analogies to give me humor in spite of my insufficiencies.

This past weekend, I started my notes of things that need to be discussed with the doctors tomorrow. I see a team of different specialists: my main doctor for the MRI results and treatment plan; a pain team management doctor for the tumors in my hands and the pain in my neck/upper back; a follow-up with my doctor for the blood clot and a few others. It is a long day–early to late in the afternoon with all the evaluations being meticulous, but repetitive. There are the talks of future possibilities, different treatment options available, different steps or things to watch. My brain about half through goes into standby. So I started bringing a list. I do better with lists. I am a note-taker person. It helps me focus and understand or stay awake. 🙂

So this list is all the changes that have occurred in my physical body since my February visit. After my scribbles of a list was finished, I put my pen down and cracked my knuckles. (I know you are not supposed to do this, but it feels good and I figure my fingers are already worse off anyway.) I look at my hands and start to laugh. Out of nowhere I remember my MRI experience from last Thursday. That day, I thought I would take a nap during the scan, but the technician asked if I wanted a movie. I looked at the list anyway and figured I would just watch something fun and that I have seen before so if I fell asleep then it was no big deal. I skim the options fast and choose what I see as “Muppets.” Now assuming this was The Muppet Movie, I get cozy with my arms strapped in and headgear set in place. The movie starts and this is no Muppet beginning…it is Muppets from Space and I think, “Oh boy. I haven’t seen this in forever!” The first fifteen or so minutes, I was breathing so hard through my nose, because it was the only way I could keep from laughing!

I did end up falling asleep during the movie, but I don’t think I would have ever thought of this on my own if I had not watched that particular movie, because unlike the other movies where Kermit and Miss Piggy are the lead characters, this time it was Gonzo and Rizzo the Rat. Gonzo. Classic character. Classic nose.

gonzo http://www.imdb.com/media/rm2902164736/tt0158811

See that nose? If you are wondering how my left ring finger now looks as it continues to curl in–think Gonzo’s nose. It matches. Find the humor in the analogy and laugh. It’s ok, because I already did.

In making my list for the doctors, I found the “head and shoulders, knees and toes” song was the best way to organize my list so I started with my hearing; then my neck and upper back–more pressure and getting hard again to stand up straight or hold up my chin; my arm and hands–besides the “Gonzo nose” finger, my left middle finger has significantly started to curl as well. Whereas my right hand just went completely numb to my elbow making things like holding pens, buttoning my pants, putting in bobby pins, holding cups or texting, holding my toothbrush, tying my shoes, pouring coffee from the pot and typing more of a daunting task than they should be. My bowels still deal with constipation; and my legs/feet are weak. I can hardly get up off the floor or when I bend over to pet Muffy, if I am not holding on to something then I easily loose my balance and occasionally just fall over. Strange though, I have not had any pain spasms–Charlie Horse cramps in the legs–but no pain spasms!

I usually look at my list and I see my life becoming less independent. And if there is one thing in life that would be the hardest to surrender, it is my independence. It was the reason last year that I struggled so hard with moving back home. But where I could only focus on the losing part, God had bigger plans and he has been helping me to see that I can still live fully on my own. I just have a few speed bumps that take a bit slower t0 get over. Yes, there are days when I am completely frustrated at my hands or cry and say, “A 25 year old should not have this problem!” (like not being able to button my pants.) But to see past my insufficiencies helps me to see how blessed I truly am, because I have resources available to help and when the resources can’t, my family can.

Over the past few months, things of this have been changing: I got my own plates, bowls and cups that I can hold better; I have my special silverware and we just ordered more because I constantly use my fork and spoon now as it is. (See utensils here.) We also just ordered a button hook so I can button my pants; coiler elastic shoelaces so I don’t have to worry about tying my shoes or bending over when they come untied; and I bought hairbands so I don’t always have to use bobby pins. If I go clothes shopping, I have to be able to put the outfit on myself or I don’t buy it; I went back to wearing dangling earrings, because most often they don’t need backs so I don’t have to worry about trying to hold the tiny piece of metal; I gave away all but a few cd’s as I came to a peace about losing my hearing; and have been getting really good at finger poking at the keyboard when my hands otherwise are too tired or cramped to type in a normal fashion.

I don’t know what kind of results tomorrow will show or what I will be doing in this next month or the rest 0f the year, but as I gather my list of insufficiencies, I remember that when I can’t…He can.

I think I can’t, I think I can’t
But I think You can, I think You can
I think I can’t, I think I can’t
But I think You can, I think You can
Gather my insufficiencies and
place them in Your hands, place them in Your hands, place them in Your hands

~Relient K, “For the Moments I Feel Faint”

Other resources:

http://www.arthritissupplies.com/good-grips-button-hook.html

http://www.arthritissupplies.com/coilers-elastic-shoelaces.html

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