Category Archives: Hospital Trips

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

5 Comments

Filed under Adjusting to NF2, Hospital Trips, Uncategorized

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

7 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips, Uncategorized

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

5 Comments

Filed under Adjusting to NF2, Hospital Trips

Moving Forward

Today was my MRI. You have to understand why I thought it was kind of a big deal: for the past four months, I have had but only one small and local doctor appointment. That’s it. ūüôā Can’t you see how joyous this is?

While I was getting ready, I did some thinking: The past four months of living without having to think of myself all the time has been the most rewarding experience–unlike during chemo when I had at least two appointments every week, plus specific times for taking chemo, and still, log every detail for doctors and research team. Chemo was not helping me.¬†It was controlling me and after much prayer, I decided to end. I know this is not a situation or conclusion that other chemo patients can decide. But this was, and still is, my final decision.¬†I truly am thankful and appreciative of all the care that is put towards my condition and know that it is always available to me when help is needed.

Since then, I cannot deny that I have painfully embraced this fact that my physical body could indeed change drastically, causing me to become fully dependent on others for my needs. It is not easy to comprehend.¬†But isn’t that faith–surrendering fully to God, dependent on Him to meet my every need? I am nothing without His strength; I can’t deny it. Doctors look at my scans and compare what they see evolving inside verses my body’s functions and performance on the outside. The contrast should be labeled as “impossible,” but that is not a word in God’s vocabulary. Possible: I know that it’s true when I get out of bed each morning.

I am a living;¬†As I see now, there is only one direction in which I can continue regardless of MRI scan results–and that is forward.

I came that they may have life and have it abundantly. ~John 10:10b

4 Comments

Filed under Adjusting to NF2, Hospital Trips

It’s different this year…

I knew it would be, but I didn’t think it would be so hard. I think it started when thoughts became reality: this would be the first Christmas¬†in which I would hear¬†no music. Earlier this summer when I gave my cd’s away,¬†the facts were there, but not the season. I am glad I gave when I did…but now it is starting¬†to settle in–Christmas¬†in Silence. Oh, believe me, I sing in my head like a 24 hour radio station, but it’s not quite the same.

There is still joy in the start of¬†December. I am just navigating my way around¬†some¬†“lumps of coal:” some ‘differences’ between Christmas present and Christmas pasts.

Eleven years ago,¬†my Christmas season was not so ordinary either. Between my diagnosis¬†on November 18, 2002 to my first¬†major surgery December 18, 2002–I¬†had missed most of school but still completed my assignments, sat for hours in waiting rooms and bright-colored hospital rooms at¬†Denver Children’s in which I¬†met a whole team of doctors that talked to me about everything that I did not even grasp or understand and still tried to do fun seasonal traditions with my youth group and family.

Then I had my surgery. I think my biggest worry was thinking I would not make it home in time for Christmas. Like I said, I did not (at that point) fathom the seriousness of the surgery and its possible effects nor even living the rest of my life with this disease. I cried more about missing school than fearful emotions (nerd, I know.) The day of the surgery, my pastor and his wife joined my parents and myself in the waiting area. They had brought some gifts from their boys and the youth group. One was a stuffed chicken that played music and danced, “The Chicken Dance” song. For some strange reason this was huge for us back then.

At first, it was just us in the room. Then a couple and a¬†with a small¬†boy, maybe aged 4, joined us. Making casual conversation, they told us that the boy’s name was Gabriel. That is all I know,¬†but I can still see his face when we showed him the dancing chicken.¬†It was silent joy of the season. I saw him a few days later when my sister and I went downstairs to do the craft of the day. Gabriel’s dad was pulling him in a red wagon; my sister was pushing me in a wheelchair.

The craft was a folded photo book. They had loads of Christmas stickers and markers. I just used stickers. I still have the little booklet; It holds five of my favorite pictures from that hospital experience. And I was discharged on Christmas Eve.

scan0001 Note: the reindeer antler headband!

Present day–my handwriting is down to minimal use. My few Thanksgiving cards were simple (I liked it that way.) I¬†knew my Christmas cards would have to be too. Wanting a different but fun¬†greeting card to accompany my picture and¬†“<3 Mel” signature,¬†I decided on stickers. I got twelve cards done and noted how it was¬†like¬†a OT exercise to my fingers. I cried because¬†on a card I messed up my signature and smiley face so bad I was going to throw it away. Mom and Dad said¬†I should still send it.¬†It is not about my signature, smiley face or stickers–it is about bringing joy to my family and friends this season. I¬†need to focus my own joy on that aspect as I finish my cards this week.

It’s only December 1st.¬†I don’t¬†think gratitude should be limited to the month of November. I¬†have much to be thankful for even in the different¬†physical circumstances.¬†Not all is different: Already this upcoming weekend, I have fun holiday events that I plan to attend with¬†my family.¬†Christmas movies have captions and I realized that I can still enjoy the Nutcracker ballet even if I¬†don’t hear the music.¬†Ballet is beautiful. Tis the season¬†for a good cup of peppermint mocha, gingerbread cookies and peanut brittle; carolers, classic Christmas¬†novels by the fireplace, and trees decorated with lights and special ornaments; snow, parties with friends or family, and the times of solitude.

It is the season of giving, the most wonderful time of the year, the joy that is ours in remembering the greatest gift of all:

For to us a child is born,
to us a son is given;
and the government shall be upon his shoulder,
and his name shall be called
Wonderful Counselor, Mighty God,
Everlasting Father, Prince of Peace.

Isaiah 9:6 ESV

6 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

I am commanded…

Put on then, as God’s chosen ones, holy and beloved, compassionate hearts, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. And above all these put on love, which binds everything together in perfect harmony.

Colossians 3:12-14 ESV

After sitting in the car, waiting rooms or doctor appointments (not to mention almost three hours in the MRI machine), my attempts to write a few emails Thursday evening¬†were fatal as I was so cold, I just couldn’t function–namely my hands. I heated the scarf my aunt gave me (it is designed that way…therapeutic), got cozy, put on my¬†slippers, made some tea and sat down to watch the movie– The Second Chance. It has been a long time since I have watched the movie; and I only thought of it, because my friend and I had brought it up during our coffee chat a few weeks ago.

The movie is set in America–typical big city where you have the “rich” side of town and then the other. In this case, the story is themed over the church–on the rich side, it is The Rock. However, their roots started at the sister church on the poor side of town. “The Second Chance” church serves the community in that part of town. The movie encircles faith in action…0n the common ground:¬†getting out of your comfort zone; laying down pride; living by faith;¬†serving, loving, forgiving.

I am not going to spoil the movie, but I will say that Pastor Jake’s ending less-than-five-minutes¬†speech is one of the best sermons I have ever heard. It is profound and so truthful. In light of the movie’s events, he reminds his congregation that they are commanded to love their enemies, even in the face of injustice.

Jesus said to love our enemies and pray for them (Matthew 5:43-48). I don’t have enemies (not to my knowledge), but in terms, there are certain individuals both in my past and a few¬†in the present in which I hold bitter thoughts towards. In loving my enemies, I am also commanded to forgive my enemies; and although I do not see them as “enemies,” the fact I am bitter towards them sort of implies enemy status. Those in my past,¬†I have no contact with anymore; the forgiveness is¬†now between me and the Lord.

The present bitterness is caused by the feeling of injustice; I feel robbed of time over the past few months mainly in the area of driving. The lack of trust and inconsistency of “concerns” resulting in a long period of¬†waiting caused me to become angry. I felt angry for my family–the extra burden it placed on them during that time.¬†And just when I can drive, my car goes in the shop for a week; why didn’t I just¬†take it over (three minutes down the road) when I was not dependent on it? So I am angry at myself for being too nice–for trying too hard to not “do anything wrong.”

The question is then, “How long do I wish to remain angry? Bitter?” It will only keep me in the past, which is where I don’t want to be anyway. Forgiveness is hard; like prayer, it is easier to mouth than mean it sincerely in your heart. It may not be a drastic change overnight, but the choice is mine:¬†will I love, pray and forgive my enemies–just as God in Christ did for me? (Ephesians 4:32)

3 Comments

Filed under Books and Movies, Family Times, Hospital Trips, Uncategorized

Live for Today

This morning I got to sleep in without a guilty conscience. I still woke at 9am out of habit, but I just rolled over and went right back to sleep for another hour. I have had things on my list to get done but at the moment, I permitted myself the extra rest. I woke up the second time thinking it was a great morning, because it was.

See, I had no forced reason to get out of bed at 9am. I don’t have to watch the time or record my times in which I take chemo. No more labs, no more excess of orange juice¬†in the refrigerator, no more syringes. In other words: I ended the Sirolimus chemotherapy. Yesterday. Finished–almost five months. Ecclesiastes 3:1 says, “For everything there is a season, and a time for every matter under heaven.” I started chemo in July in blind faith; I am ending it in the same.

This may not make sense to you; it may seem either that I have given up on treatments or that I am turning into a rebel. Neither is the case, but I have come to some decisions about my health, what I am currently doing as far as treatments and appointments and most important–what¬†I want to be doing while I am still able to on my own.

My MRI results showed stable, or “no changes” that they can decipher. This is always a sigh of relief. However, this time¬†it was a tad aggravating–if the results are stable then what on earth is going on that we cannot see? I suggested that they start putting some of the research funds/efforts towards a 3-D MRI machine. Maybe I am too much a Star Wars¬†fan, but I think that would be awesome and more¬†helpful¬†in these situations as then we could see the tumors¬†closer and at different angles.

So if my MRI was stable, then why did I end chemo? It is no surprise to my family (nor my doctor either.) I knew I would be ending chemo at the last appointment on October 22nd; the timing was not right for the discussion as well as I had decided to go the full two months again and wanted the MRI anyway, regardless of the results. I also see now the new lessons of faith that went hand in hand with the physical changes that have occurred since our trip to Wisconsin. These have shaped the path of where I stand now in my decisions and trust in God.

I ended chemo, because there¬†comes¬†a point in time where you ask, “Is this benefitting me?” I know you can’t ask this for all situations but I did in this case. The chemo may or may not have been keeping them tumors stable, but because the side effects in my body have increased at a fast rate, I don’t¬†think tumor size is the issue…more what we cannot see, in which I did not see chemo helping. It actually was starting to frustrate me more than anything. I see this also with my AFO braces. I know–I just blogged my “I am a champion” post, but again, it was pre-Wisconsin days.

I know my body is fading; I have excepted that fact through much tears and a broken spirit.¬†After Wisconsin, I just gave up on life. I saw no hope. As that week ended and I restarted my times of reading the Word,¬†I kept returning to His burning question: “Do you trust me?” Trust. It is what¬†I desire most from my doctors, family and myself that I know my body: I am the one living with the disease, experience the changes, and know when I need different. If I desire that in my own life, how much more God desires it from me: He created my body, died and rose again so my temporary pain would become eternal life, and meets my needs so that I can¬†continue to live. And that is why I made some decisions: I am done dwelling on the past and trying to fix the future. I just want to live to the fullest in the present.

You make known to me the path of life; in your presence there is fullness of joy; at your right hand are pleasures forevermore. ~Psalm 16:11

10 Comments

Filed under Adjusting to NF2, Hospital Trips