Tag Archives: side effects of medicines

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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Eye Appointment Findings

Today, Mom and I went to Cincinnati for my ophthalmologist appointment. I was super excited this past November at my last check up that I could extend my next appointment from 4 months to 6 months, as my optic nerves had been very stable and doing well. Three months later, the end of February, I started noticing blurred vision in the farthest corner of my left peripheral vision; random days of blurriness in my vision began in both eyes by mid-March; by the first of April it was consistent.

Considering the extent of my disease, this probably is not the best way to go about living everyday, if and when, I am feeling or “seeing” new changes. But oftentimes, I give the changes a fair chance to prove they are significant changes before I mention anything, because some changes are not worth a huge fuss over. However, if I feel the changes are a major issue or I am concerned right at the start, I will talk to my parents and make them aware. Just depends.

In this case, I only mentioned something about my left peripheral vision when I announced my driving decision. At that point in time, I did not think the hazy blur would change and would just show, at most, as more blind spot on my visual field test in May. But when the blurred haze started becoming more frequent, I also noticed it was affecting the ways my eyes react to light and focusing–ultimately, balance and lip-reading as well.

By now, I am not sure if I had so much mentioned the problem to my parents, but I know I did a bit of gripping about my vision frustrations–and besides that, I would take off my glasses to read, as I can’t focus fully without major squinting when wearing them. First time Dad saw me in this manner, he sort of gave me that shock look (“What are you doing?”)…”I read better without my glasses on,” I tell him. Reading without my glasses or else squinting profusely are now a pretty normal sight to see.

My parents are notorious at knowing my disease (a whole lot better than myself, how ironic) and when I finally explained my eye problems in full-length, analogical descriptions, several possibilities were discussed: maybe I just needed new glasses or bifocals; it could be my optic nerves, but it didn’t seem to quite fit as I have had that experience previously; or it could be cataracts, as long-term use of the steroids can cause an increase in this area. Keeping all these in mind, I wrote my blog update very vague, because even details to me were not worth trying to figure out on my own–leads to worry anyway.

And so today, we learned a few things: 1) By the way I was holding my punch button while taking the visual field tests, it was proof that I did not grow up playing Mario Brothers. And I mentioned this to the lab technician as we started the right eye test for a second time, (haha).  2) My visual field tests and optic nerves are actually around the same results as they were in November. Stable results are joyous thoughts of thankfulness! I am so glad it is not my optic nerves! 3) Thus, the cause and problem is cataracts. I see a surgeon specialist, highly recommended by my ophthalmologist, on May 14th where we will discuss what comes next. For now, it is back to waiting in the blur, without worry.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

2 Corinthians 4:18, NIV

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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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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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Sweet Aroma.

If you happen to see me¬†as of late, you might¬†often times catch me¬†with my nose¬†in the air. Don’t think much of it…I am¬†just trying to smell the air, because it¬†carries a¬†sweet aroma. Actually,¬†I don’t even think it is the air. I think it is¬†just my nose or senses.¬†No one else can smell it. I can’t even tell you where it came from.¬†If you are thinking this is insane–it probably¬†is. Even my doctor had never heard of¬†anything like this before. I am thinking it is from one of my medicines. I would have guessed¬†Lovenox, because the scent started¬†decreasing last week once I stopped the blood thinner shots. I was a¬†bit sad, and aghast when I actually smelled something quite unpleasant. I am just one of those¬†rare few that get side¬†effects¬†concerning the sense of smell. It certainly is not the first time that it has happened when taking treatments.

Like I¬†said,¬†I can’t remember smelling the aroma before the blood clot…but¬†I sometimes¬†wonder if I did but did not recognize¬†it.¬†I am a bit slow to piecing these things together.¬†Right before¬†my¬†last doctors appointment,¬†I finally came to my senses [LOL, classic Mel punch line right there–get it??] and realized that I am smelling this sweet aroma everywhere I go. I really can’t describe the smell. It is not vanilla per say, but almost like a fresh rose smell. I have no sense of¬†smell. Literally, so I can’t even remember the last time I smelled a rose…so I am just thinking in my mind that the smell of a rose is the best possible answer. ūüôā I know it is not lavender! Maybe that is because I have never liked the smell–in essence, maybe¬†I am making my smell based off personal bias of favorite flower smells. Isn’t this great? It is like¬†a psychology class. ūüôā Regardless, my sweet aroma is like having a Glad plug-in affixed to my nostrils at all times. ūüėÄ Coming from two and a half¬†years of not smelling¬†to having this aroma in my nose has been quite pleasant!

Last week, I did notice the aroma fade. I thought it ended.¬†I would get wisps of it here and there…that is when I would stick my nose in the air and just smell–grasping as much of it as¬†I could get before it was gone. Mom caught me in the kitchen; it happened at a red light coming home from errands (I am sure it looked most ridiculous…oh well); and it happened Saturday night after my sister and I finished a movie in the basement. Now that it has returned I don’t have to smell the air as often…because I smell it when I breathe. It is almost as if it is inside me.

The¬†sweet aroma was not the only thing to fade last week: my left¬†hearing aid is currently not¬†working, thus, my hearing seemed to “fade” as¬†I depended (or depend)¬†on lip-reading and my right¬†hearing aid only until Thursday’s appointment. My bruises are fading–my stomach is almost back to its normal color in most areas; and as I decreased my dose of steroids, what I got in return was a reverse of side effects of swelling, numbness, and extreme pain in the neck and upper back. As the medicines faded–the side effects worsened so bad that on several times I could not even lift my head. I was¬†a hunchback. Not even my pain medicine helped very much on Saturday afternoon; so I warmed my rice pack, placed it on my neck and crawled into bed for a nap. That seemed to help!

I am now on the plan of getting back on the steroid pills at the moment. It will take time to get to where I was before, but regaining stability to where I can function is the key. It is the thesis of my doctor appointments on Thursday–to formulate a plan:¬†keeping me functioning and independent as long as possible while decreasing the pain without using a lot of heavy pain medicines. Talking with my parents last night made me realize how much I don’t know. I have questions that seem to have no answer.

I also realized last night that I have been having inner denial. I know my body is slowing down, changing, fading…but I just chose the road to dismiss it. Doctor appointments seem like a blur of massive information; I usually get home and totally dismiss everything. I let myself try to forget that I have struggles, pain. I ignore it by pushing myself harder against it. My own act of inner denial of thinking, “I won’t get to that point of extremity health problems.” Sometimes I don’t think that is bad…it gives me the motivation to carry on and conquer.¬†But I¬†also¬†can’t live a life ignoring¬†it either. My dad reminded me last night that things will continue to change. I have so much pressure right now from tumors along the spine in and out that any slight change is going to effect my body.

There will be no timeline of events. No way to prepare or know when the next changes will be.¬†The thing is–everything will fade in time.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known. (1 Corinthians 13:12)

– – –

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18)

These promises will not fade over time. God holds my future. Amidst life’s pain and suffering, those words speak a sweet aroma to the soul:.¬†“But thanks be to God, who in Christ always leads us in triumphal procession, and through us spreads the fragrance of the knowledge of him everywhere. For we are the aroma of Christ to God…” (2 Corinthians 2:14-15a).

~

*A song that has been on my mind since last week:

Shaun Groves. “After the Music Fades.” Invitation to Eavesdrop. Provident Records, 2004.

http://www.youtube.com/watch?v=Sa9WVoF0fBM

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