Tag Archives: doctor appointments

For when I will see clearly, again…

Not even a month had passed since I last saw the surgeon ophthalmologist regarding my cataracts. It was during that middle portion of May that the first correction surgery for the left eye was scheduled for July 1st. It seemed as such a long wait! And yet here we are..the surgery proceeding as planned–next week.

By now, it shouldn’t be a surprise (much) when I next mention that during the past month, my right eye has changed. Like any other change, it started slowly. The cataracts have already effected my vision as far as the blurry haze off-setting my balance and deepening the light sensitivity issue. I have struggled with light in darkness situations regarding the left eye (born with a lazy eye) since we moved here; I had made the decision to stop evening driving shortly after the move. My left eye just could not handle the passing car lights anymore. It was different in Denver: cities know no darkness.

If you recall, I have–at one point in time shortly too after the move–had swelling on the optic nerves, resulting in seeing black spots. As it progressed to larger dots, I saw the ophthalmologist–who presently still is my eye doctor–and he prescribed the medicine that causes carbonated drinks to taste metallic. Not complaining, because as of the past two years, the medicine has helped keep the optic nerves stable. (On a side note: unlike other individuals with NF2, I do not have tumors on my optic nerves.)

What then causes the optic nerves to swell? “Tumors,” would come a reply. Although it’s almost like a trick question, because there is no definite cause tumor in sight (at least for me, since I have no tumors on the optic nerves growing with obviousness alarm.) ¬†My body contains many, many, many tumors…we don’t even know how many to be exact. With many tumors growing at the same time, it is difficult to know which tumor causes what side effect. Even when tumors on the MRI scans show “no growth,” but I have increasing side effects (numbness, intestine problems, weakness in balance and strength), we still don’t exactly know what tumor is causing the problem.

When my right eye started changing about a month ago, different to that of the cataract haze, I didn’t think it to be an optic nerve problem. It started here and there, an intense darker fuzz in the eye when it caught a time of light sensitivity causing me to have to pause longer to re-adjust my eye. It only lasted a few seconds at first, but I still got to saying, “Hold on…eyes adjusting!”–so that way the person I was talking to understood that I was no longer lip-reading, but squint focusing back to normal sight.

After the trip to Colorado, the problem started increasing more times a day and I noticed that instead of seeing the typical cataract haze, I was now seeing a tad darker tint of everything. Trying to explain this situation, Mom suggests: “Like a veil?” Mom is so good with words. “Yes! Like a veil!” It still is the hardest situation to explain, but it is not very difficult to explain when you experience seeing in “tunnel vision.” And that is when Mom called the ophthalmologist office at the surgical CEI center where they set up an appointment last week in order to see what is going on with my eyes, based off my rambling adjective descriptions of side effects.

Without even dilating my eyes, the ophthalmologist on the emergency appointment floor noted that the optic nerve on the right eye is more swollen. I don’t understand how they “measure” the growth, but he mentioned that (after taking the density) it had gone from a “2” to around a “3 or 4.” All I know is that this means it grew. The doctor asked if I had any questions–which I didn’t–and as we left, the office there set an appointment for the following day with my main ophthalmologist. Bright and early the next morning, Mom and I headed back to Cincinnati.

I ended up taking another visual field test, even though I had just been in April for an appointment. The hardest part of the test is holding the clicker; I ended in holding it in my hands much like a tiny game boy remote, but grasping the cord with my right hand so I wouldn’t drop it. ūüôā Considering the eye condition, I was a bit shocked when the visual fields showed smaller-than-expected change. The outer and upper rims are areas where changes occurred in both eyes, but the inner middle to bottom portion of my right eye is where you see the most growth of blackness on the chart.

I did have a few questions for my doctor, and then we discussed the next steps. As of right now, he doubled my eye medicine dose per day. Change may occur slowly–so it is hoped that by my follow-up appointment on August 20th that there will have been positive changes and stable optic nerves. I do have one other option for helping release the pressure on the nerve, but it is a small surgery on the outer lining of the nerve; and even though the nerve is not touched, I am preferring no surgery.

This past month…especially past two weeks..has been a test of patience. I get frustrated with my eyes. “I can’t see!!!!” It is becoming my new “Good grief” slogan; but the truth is that I¬†can¬†see…just not how it used to be. And until the day when my sight returns to its former self, I just have to keep focusing on the Lord. I can’t deny that fearful thoughts of blindness has already crossed my mind, but focusing on them causes me to see life through tunnel vision. Eyes of faith oust the darkness and shines the light of hope in its place.

God, my God, I cry out:
Your beloved needs You now
God, be near; calm my fear
And take my doubt

Your kindness is what pulls me up
Your love is all that draws me in

[Chorus]
I will lift my eyes to the Maker
Of the mountains I can’t climb
I will lift my eyes to the Calmer
Of the oceans raging wild
I will lift my eyes to the Healer
Of the hurt I hold inside
I will lift my eyes, lift my eyes to You

I Will Lift My Eyes.” Bebo Norman. Between the Dreaming and the Coming True.¬†2006.

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Seeing Ahead

Last week I saw the surgeon ophthalmologist for the cataracts in my eyes. After a whole day (literally) of sitting in the waiting area or the exam rooms, I left the hospital with extremely tired eyes. Cataracts plus dilated eye drops does not equal a good equation. ūüôā

I haven’t had an eye exam in close to two and a half years. When I see my regular ophthalmologist every four months, it is only a visual field test and a quick shining of bright lights in the eyes as he checks the optic nerves for signs of swelling. No dilating, no tests where they set lenses and click back and forth–in which you say whether “one” or “two” is the clearer option. Simple and fast.

That being said, this eye appointment was interesting. Not only were my eyes so dilated (you could hardly see the color of my eyes), but also the bright lights in the eyes were making lip-reading a colorful experience. Everywhere I looked seemed to be a mesh of sea-green and magenta. I also realized that taking the option “one” or “two” test, I needed assistance; if I was viewing the letters on the wall with Star Wars looking vision specs, how was I to know which number was with which lens? I solved the problem by explaining that Mom should stand next to me–when the nurse flipped the lens, she would say the number. Mom would then tap my hand either once or twice and I would say which option was best. It was like a signing interpretation in the dark!

When my optic nerves were swollen and I was seeing black spots in my vision, I started a medication to help keep the swelling stable. Even last spring when the MRI showed growth in 80% of the brain tumors, my vision was not affected and I am very thankful. Although, currently, I am not seeing black spots, seeing through a fogged lens is starting to annoy me. I am out of focus. A least at home I can squint; I was told not to squint when taking the “read the letters as far down as you can” test. Squint focusing was cheating. ūüôā

The past few days, has been difficult. It is testing my patience. I left the hospital with a surgery date: my left eye will be corrected July 1st. It seems so long…the thoughts, “Can’t it just be fixed right now?’ come to mind. Maybe more so, because of all my health problems, this is one that can be fixed…it’s temporary, anything else I experience is a permanent loss.

This morning, the story of Jesus healing a blind man came to mind (Mark 8:22-26.) When Jesus first laid his hands on the man’s eyes, the man could see–but it was not clear: “I see people, but they look like trees walking,” (24.) It was only after Jesus laid his hands on the man’s eyes for a second time that the man’s vision was fully healed. I wondered what the blind man may have been thinking after the first time Jesus laid his hands on his eyes, or even the disciples who were also present. It is not important, but the story does show a testing of faith.

The answers to our sufferings may not come rushing in all at once; in fact, it is rare if they do. What I see ahead may appear hazed and out of focus, but it is temporary–one day Faith will be Sight.

Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.

I Corinthians 13:12, NLT

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Today’s expectations

I expected it to be an early morning: 5am, it was.
I expected the coffee machine at Children’s to boost my morning energy: the new machine was broken. 8am, no coffee.
I expected the appointments to discuss the main issues–balance, intestines and overall function–with a long list of things that can help for “future” changes: it did, but without the long list.
I expected my MRI results to come back reporting “stable” conditions, even though I have still experienced ¬†some physical changes, like numbness in the right hand: it did and I am thankful for no tumor growth.
I expected my doctor to want an MRI in another 4 months: he didn’t and left the choice to me. Next MRI is planned for mid-August (6 whole months!) ūüôā
I expected all my questions to be answered: they were, along with much great conversation.
I expected to leave by lunch: 12pm, we did.
– – –
Life is often lived in arrays of expectations. A day like today shines bright and hopeful; other days, the expectations fall into shadows of despair. And what of the expectations I hold for myself? I often feel the “need to perform” or “prove” to doctors that I am still doing my best possible. And though I did not struggle much with that today, there were still moments.¬†And what of the Great Physician? Why do I feel the need to prove myself to God physically? He knows my body is broken. And he heals: maybe not in the ways I expect, but always in hope.

The hope of the righteous brings joy, but the expectation of the wicked will perish. ~Proverbs 10:28 ESV

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Two months ago…

Yesterday marked¬†two months¬†of taking the chemo therapy, Sirolimus. Seeming like we had just made the trip to Children’s Hospital in Cincinnati, Mom and I embarked on yet another early morning drive. (And that was sarcasm…we literally had done the same routine on Friday morning for my MRI.) The only differences were (1) traffic–yesterday reminded me of why I don’t miss city driving; and (2) Friday I could drink coffee on the drive down–I could yesterday but not until after my lab work was drawn. I am very thankful for my¬†Mom’s driving as I would have never made it on my own yesterday morning.

Yesterday’s appointment covered a LOT of things.¬†We¬†discussed my walking¬†and¬†balance, PT and OT therapy, the need for ankle braces, driving and safety, better communication¬†methods for me between the team of doctors, and a few fun things like my paintings. ūüôā¬†My initial intent was, as always, to blog the details and keep you informed on the latest like a news anchor, but I don’t think¬†that it is best¬†to do that this time.¬†Everything is changing and more appointments are appearing; I will just blog as it comes.

Tonight I begin with my MRI results: I went to the appointment with a neutral emotion.¬†A few weeks ago, under frustration, my thoughts were that if the tumors had grown more in the brain, then I would just want to stop the chemo. I don’t know where the attitude changed, but I realized last week that I found myself thinking differently.¬†I reasoned that maybe two months was not long enough time for the medicine to have a chance, so regardless of the MRI results, I was fine with continuing the treatments. However, I didn’t want to be a pessimist, but¬†because I have experienced continuing downside side effects, especially in my right hand, balance and right ear, I assumed the scans would show growth.

I assumed wrong. The MRI showed stable in the brain. ūüôā¬†I still could be experiencing hearing loss and physical side effects from the tumors but that is where it gets tricky, because MRI scans only show growth,¬†not density (if the tumors harden they squeeze more on the nerve)…but since there is¬†no way to calculate this, I will just take the good news: there was no change. What a praise and answer to prayer! Two months ago I saw nothing but growth.

Overall, the MRI of the¬†spine looked stable too. I learned something though; instances such as this amaze me at how much I seem to miss…then when I learn about it,¬†my curiosity comes out¬†as a weird question, “I have that??”¬†It seems to happen more often than not…I seriously should do more study on my disease. Anyway, what I learned yesterday is that the tumor that¬†grows in the spinal cord from C-4 to C-7 area has cysts resting on top and on bottom of the tumor. I never knew this. While the tumor has not grown any nor the bottom cyst, there was more fluid in the cyst on top of the tumor.¬†They don’t know where the extra fluid comes from, but the cyst now rests in the brainstem.

They showed¬†me the scan and¬†the top cyst appears to be¬†“ballooning” from the extra fluid¬†(it literally looks like one too). It took me¬†time to understand this effect of the cysts being like balloons, but basically it is like holding a water balloon and squeezing one end so that the other gets bigger. I asked if the extra fluid¬†could be¬†from the tumors in the brain that¬†were growing…just maybe added pressure, but¬†doctors were not sure.

Besides¬†the¬†physical challenges¬†I typically blog about, the thought occurred to me that because this cyst is now in my brainstem, I should probably have more headaches (but I don’t have any) and more neck pain but that is minimal too. I could have a big list of side effects from the chemo, but so far I have only experienced a minimal few. I will remain on the chemo for another two months, then another MRI. Then go from there.

As my¬†parents helped me today with¬†the phone calls for the next step appointments, I thought of how I am surrounded: I have a circle of doctors who¬†want the best for me, a family that sacrifices their agendas¬†for me,¬†friends who encourage me, prayer warriors who faithfully pray for me, and a mighty God who holds me in His hands. Changes are going to come and I am not the best at shifting gears…but as my Mom told me tonight, “You have to be flexible with this.”¬†So as the calendar¬†starts to overflow with different appointments over the next few weeks,¬†I¬†think I should just drop my expectations of how and when things should be done and just let God write in the details. It will make¬†this complicated¬†chaos¬†more¬†livable.

May all your expectations be frustrated.

May all your plans be thwarted.

May all of your desires be withered into nothingness,

that you may experience the powerlessness and poverty of a child

and sing and dance

in the Love of God the Father, the Son and the Spirit.

~Blessing given to Henri Nouwen by his spiritual mentor

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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,‚ÄĚ 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.

‚ÄúIf God sends us on strong paths, we are provided strong shoes.‚ÄĚ

Corrie ten Boom

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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. ‚ÄĒC.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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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.
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.
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.
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.)
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.
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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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. ūüôā

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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Filed under Adjusting to NF2, Books and Movies, Hospital Trips

Half the Results

It is that time again…after three months of no doctor appointments (give or take a few random ones), today was my annual MRI and hearing test day. I only have half the results as¬†I will find out the results of my MRI next week when I see my team of doctors at Children’s in Cincinnati.

My results are from¬†my hearing test. I had actually prepared myself (maybe prepared is too strong of a word)–hmmm. maybe I should say, “wrestled with my emotions” on¬†this subject weeks ago. It first started when I was on the spring break vacation with my family. I felt isolation. There were the large family dinners with company. In those moments, I felt anger and frustration. There were the¬†nights I laid in bed and talked to God and just asked Him how I was going to live with all this new change. I felt sadness. There were the moments my family signed to me and I understood; practicing a language brought laughter.

I didn’t really have any emotions today going into my hearing test. Well, ok, maybe one slight assertive emotion:¬†I go in and sit in the chair and we start discussing how my hearing has been and changes I have noticed. In the conversation I bring up my well-reasoned and thought out explanation of why I choose not to do the test where they read the word but cover their mouth. I say, “I just make up words.” Not on purpose, but I have no idea what the word is. I just think: that sounded like it started with a “C” and then say a word that it could be. Think of words! My probability of guessing the right word is off the charts!¬†Which is why I always get zero correct when lips are covered. Then we test where I can read lips. A much more enjoyable experience! Sadly though, my assertiveness does not compare to set procedures, so I had to take all the word tests.¬†I am sure the audiologist does not hear cases like mine often, since I am so old compared to the other patients there,¬†so I am thankful she took time to hear my argument. ūüôā
My right ear has stayed the same since February which is good news! The tinnitus today was not that bad, so I am glad for that too as some days it is SO loud, I feel that affects my hearing. I have an appointment next Friday¬†with the Hearing, Speech and Deafness¬†Center¬†to get my hearing aid on the right side adjusted to a higher volume of hearing compatibility,¬†because I don’t hear anything out of my left. The audiologist said, “It is not deaf yet,” because I could hear the beeps at¬†two¬†different levels¬†(which I was not expecting). I was shocked! When I asked,¬†she said it was at the highest level…so if you had regular hearing, I wonder how loud it would be!¬†Basically,¬†in order to “hear” something out of my left ear, it would have to be¬†a volume of epic proportion–and at that point I¬†still have my right ear so how would I be able to¬†distinguish¬†left from right?
I have been¬†going without my left¬†aid most often as it is a waste of battery. I usually just wear it in order to change the settings for the right as my right hand is so numb that changing the settings with it gets frustrating. At the present moment this is what I will continue to do. We did discuss very briefly the fact that cochlear implants is still an option if I choose. I previously had discussed with several doctors and did my own thinking and praying, listing of pros and cons on the subject.¬†Right now, I still don’t have a peace about it, but I¬†also feel that it is time to relook at my list, research and pray again about the subject just to refresh my knowledge. It is one of those situations I often wish that there was an easy answer for–but if the answer was easy, where would my faith be?

Therefore the Lord waits to be gracious to you,¬†and therefore he exalts himself to show mercy to you. For the Lord is a God of justice;¬†blessed are all those who wait for him.¬†For a people shall dwell in Zion, in Jerusalem; you shall weep no more. He will surely be gracious to you at the sound of your cry. As soon as he hears it, he answers you. And though the Lord give you the bread of adversity and the water of affliction, yet your Teacher will not hide himself anymore, but your eyes shall see your Teacher. And your ears shall hear a word behind you, saying, ‚ÄúThis is the way, walk in it,‚ÄĚ when you turn to the right or when you turn to the left. ~Isaiah 30:18-21 ESV

That is all I have today…more to come.

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Filed under Adjusting to NF2, Family Times, Hospital Trips

My set date.

My date for surgery is set for this Tuesday (Jan. 22nd) at 10 a.m. I am to sign in to get started at 8:30 a.m., which means that my parents and I will be leaving the house by 6 a.m. Everything after that depends on the surgery–I could possibly go home by Tuesday night or I might have to stay in ICU for a day or two…just depends on the surgery. Not worrying about the “if’s”…just¬†going prepared with a little bag of things for “just-in-case” (i.e.¬†personal¬†items +¬†book + Star Wars¬†II dvd). ūüėÄ After yesterday’s appointment with the Anesthesiologist, I am just really ready to get this done. I am now in the anxiety stage I feel. Like I am ready, but I have to wait.

Yesterday’s appointment was a bit overwhelming to be honest. I get loaded with all this information; it is hard for my brain to grasp sometimes. It was good to talk though…it helped me mentally put aside that big fear (plus shed a few tears)…but I think in doing so,¬†I¬†started¬†a new nervous¬†fear of “I hope I do everything right the day before/morning of surgery.” This surgery is not even a huge surgery like I have had before and yet, it seems so much more detailed this time. Maybe the fact that my first surgery was when I was 14…everything was so new and I don’t think I fully grasped¬†the¬†details about all that is in me. Fast forward ten years and it makes sense this time…like a whole new understanding of how and why¬†my body is the way it is. So to sit there and hear everything that is possibly wrong with me can get a bit cloudy in the brain…like “I don’t want to hear this again.”

Then this morning I read the Psalms. I just love the Psalms! I read Psalm 73, 136 and 139.

Nevertheless, I am continually with you;
you hold my right hand.
You guide me with your counsel,
and afterward you will receive me to glory.
Whom have I in heaven but you?
And there is nothing on earth that I desire besides you.
My flesh and my heart may fail,
but God is the strength of my heart and my portion forever. (73:23-26)

Give thanks to the Lord of lords, for his steadfast love endures forever; to him who alone does great wonders, for his steadfast love endures forever. (136:3-4)

For you formed my inward parts;
you knitted me together in my mother’s womb.
I praise you, for I am fearfully and wonderfully made.
Wonderful are your works;
my soul knows it very well. (139:13-14)

It makes more sense to focus on the good; it makes the heart light. So that is my endeavor this weekend in pre-surgery thoughts: to focus on the good that will come out of the surgery, the good in things I am still physically capable of doing, the good in the gifts God has given me (especially being able to paint), the good in loving others, the good in finding rest, the good in fellowship. And, I hope your weekend is full of God’s goodness.

Thank you for your continued prayers and encouragement!

More to come…

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Filed under Adjusting to NF2, Hospital Trips