Category Archives: 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


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


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)


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


Filed under Adjusting to NF2, Hospital Trips

When all the scenes flow together…

Today my parents and I went to the production of War Horse at the Schuster Performing Arts¬†Center in Dayton. It was¬†a phenomenal performance! Unlike most plays that¬†pause in¬†between¬†different¬†sections¬†for changes in scenes or the props,¬†everything today flowed in motion just like¬†turning¬†pages in a book.¬†Speaking of¬†the¬†book, I have not read it (War Horse by Michael M0rpurgo)–nor have I¬†seen the movie¬†that DreamWorks¬†produced in 2011; so¬†I was a little confused in the second half but am very thankful for the change in seating arrangements they offered when we first arrived,¬†so I could be close to the interpreters. It was a sad, but¬†loving story (always best when based off true events). I can now put the book on my “to read” list, but seeing the play was amazing.

This week, all the “scenes” of the days seemed to flow together. Not¬†a bad thing, just got a tiny overwhelming when you add the normal daily life events to tumbling health factors. The week started pretty typical: who doesn’t have insane schedules these days? I had a few important things this week: my driving test was the first. The PT gave me her clearance but wishes to see me again in six months. It was not until Thursday that I got clearance from my rehabilitation doctor at Children’s. I celebrated by going to Beans-n-Cream for a chai and some reading. I felt¬†a bit social awkward, being out by myself for the first time and having to use my cane for balance, but I still enjoyed being out and back in my favorite coffee-house!

The most important thing was my doctor’s appointment on Tuesday. It was the end of month four¬†of Sirolimus chemo treatments; the start of month five. Although there are no changes for right now as far as what I have been doing in treatments, I still discussed the physical¬†changes that happened in my body over the WI weekend with my doctor.

On the way to WI, something in my body snapped and I got intense pressure (even more so) on my spine, which causes a¬†list of new areas affected or the¬†areas, such as my feet, to worsen.¬†Simultaneously, I have had an¬†increase of¬†stiffness and numbness in my right arm. Over the weekend, I was hoping it was temporary…also because I was chilled all weekend, I thought maybe being back home in warmer air (which never happened, as¬†this week our weather chilled to “winter weather”)¬†and my own bed might release some of this new symptom. I am getting to a point where I need to stop going to bed hoping that tomorrow will bring a ray of release from it all, because it doesn’t happen that way (the way I want)–I only see it¬†to be getting more unstable and on the downward slope.

I really was doing pretty well for the most part this week; I was not until Thursday evening that the pressure in my lower spine increased more…occasionally hitting the tailbone; Best way I can describe the feeling is like coming down on your tailbone while snowboarding. Yesterday was when it started to be obvious that it was affecting my balance more in the evening as I was taking smaller steps in precaution. I don’t want to fall. This morning, I just went ahead and used my cane; and now the walker.

To be honest, I didn’t write this post the past few days because I haven’t even had a chance to grasp it all; I can’t write¬†on this¬†blog¬†(though¬†I try my hardest) about all this in a¬†way for you to understand. I don’t even understand, nor¬†my parents¬†or family that sees it direct and experiences the¬†changes with me–just not physically. These past few days I really have just been a wreck–at least emotionally. And yet I don’t even know what emotions I am really having, because it resembles the production we saw today–all flowing together. And so right now, I am struggling. And that is about as honest as I can be…


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


The Olympics are always a fascinating two-week¬†event to watch (Even more so, the Paralympics that come a few weeks after!!) Although I enjoy watching the¬†ice skating, curling, and speed skating competitions, my favorite of the two seasons (winter/summer) is the Summer Games.¬†Last summer, the Olympics were held in London–which I found fabulous as Britain/UK is on the top of my own “Mel’s World Travels” sort of wish list. I had been reading several books on the reigns¬†of¬†the different¬†kings/queens and through some church history already, so when CBS would air the “interesting things of London” segments, I felt like a school kid.

At that time, I worked early morning shifts and¬†would be home by lunch for the rest of the day.¬†This¬†meant that I¬†had the chance to watch the afternoon events that you don’t normally see in the evening time as they get crowded out from¬†the more popular ones.¬†I got to see¬†sailing, archery, table tennis, equestrian,¬†judo,¬†fencing, taekwondo and I watched some weight lifting. It was all very interesting.

Every sport has an attribute in which I feel they put more attention to¬†more than another sport would focus on…for example: soccer: kicks and feet motions; synchronized¬†diving: timing of the downward movements; equestrian: pose and maintaining your horse; rowing: upper body strength; and my favorite, because I¬†have none–gymnastics: BALANCE!

I should correct myself: I don’t have much balance, but anymore these days even my “much” balance does not account for much. ūüėČ I could venture to say that I somewhat¬†occasionally perform floor exercises like a gymnast, but less graceful in the air, more flapping of arm movements and I never land on my feet (quite the opposite.) However, the balance issue is currently being worked on during these past few PT sessions and ones yet to come. My rehabilitation doctor at Children’s prescribed for me to get ankle braces. These aren’t just any ankle brace–they are AFO¬†braces. (I like the abbreviation–it stands for Ankle-foot Orthotic.) They look like this:


What you see is what it is–huge, feels like hard plastic, from knee past the toes bondage for your feet. So far the only fun part has been my display of cool designed knee-high¬†socks, which I actually only get to wear on the right leg as the neutral colored compression stocking takes the left leg. But with jeans on, nobody notices anyway. Otherwise, these AFO’s are hard work! I feel I am training for the Olympics, except in my case, I am “re-training” my brain to use the muscles that have weakened after¬†years of atrophy.¬†Also, these braces¬†are helping my right ankle to stay straight when I walk (but¬†I feel it trying to twist) and in time, I hope the added weight my left leg gains from the weak right side will balance out too.

The exercises so far have been small but aiming at balance. It is unbelievable how¬†it can make your legs feel like Jello within a few minutes! We took another strength-goals test today to see how I¬†am progressing…even though it has had two DVTs, my left leg is the strong leg!¬†But that doesn’t surprise me. Usually by the end of my session, I am ready for the braces to come off, but today I went an hour longer¬†after my PT left and¬†did normal routine things…then¬†I was¬†ready to take them off!¬†The walker proved to be a useful resource¬†in stability as I walked around¬†the house just¬†fine today; best part was when I needed a break, I locked the wheels and sat for a minute¬†to catch my breath.

This is only the beginning. Change will not happen over night…it is going to take time, effort, and a lot of sore muscles. In the end,¬†I should¬†(and hope) be able to wear the braces regularly in a day; I anticipate less falling, but that may just be inevitable.

I am ready for the challenge: it makes me feel like an Olympian.


The Olympic Stadium. Athens, Greece.

But he knows the way that I take; when he has tried me, I shall come out as gold. Job 23:10 ESV


Filed under Adjusting to NF2, Hospital Trips

Driving: Take Two

Yesterday started out like any other typical “It is an important day today!” —


Let’s just throw out the fact that it was a Monday.

Yep, the day¬†in which I was to complete¬†part two¬†of my driving evaluation tests could not have started out with any better of the typical important day fashion: sleeping¬†past¬†my alarm and¬†Mom waking me up fifteen minutes before we had to leave. Her ever-calm assurance¬†in these situations met my panic mode as I stumbled out of bed and started going through my morning list of important things I had to do (let alone getting somewhat presentable for the day): feed Muffy, take medicines, etc. “And I need coffee.” Mom said she would make sure Muffy is fed and start some coffee.

Only a few minutes past when we had to leave–with fresh coffee and an apple for breakfast–I get in the car and feel like I can finally catch my breath and looked forward to getting the test over and done!¬†It amazes me that something like this can consume your mind. I do not have a problem with my driving–and yet when doctors first ordered the evaluation back in August, all of a sudden the restriction caused me to doubt my driving–so much that I was having dreams of being¬†in accidents. After the first evaluation¬†September 19th¬†(even though I passed), I still had restrictions until I took this second part. I was able to practice in empty parking lots, which boosted confidence, but it is not a main road.

Feeling confident, I sign in and a few minutes later head out the door with the PT to the Student Driver car. I have only driven one of these official cars once for Driver’s Ed class…that was ten years ago. My instructor (who was also my history/government teacher) must have trusted his students as for our actual driving license test, we could choose between the Student Driver car or one that we had that we were more comfortable driving. I chose the latter of the two options…nothing compares to our family’s 1987 Honda Accord. It is like an heirloom. It witnessed at least thirteen years of high school drama from the parking lot between me and my sisters. Pretty classy!

Anyway,¬†I would have felt¬†more comfortable¬†in my own car (logically), but since it¬†was not a¬†possibility in this situation, I tried my best to adjust to the Student Driver car even though¬†there were many things¬†very different from my car. I found my biggest frustrations being their steering wheel having these huge box-like attachments right¬†above the “9” and “3” area..which is usually where I place my hands. (Note that this test was caused by the concern of my hand function in the first place, so the scenario didn’t suit well.) I also had a problem with the side view mirrors not having the small blind-view mirrors. (Those have saved me from numerous¬†episodes of changing lane woes and proved so when¬†I was doing some reverse exercises with cones in the parking lot.)

We finally get to driving around in a very pretty residential area–being fully determined not to mess with my chances of the evaluation, I kept my focus. Once we determined that the motion for “keep going straight” involved two hands (better clarification),¬†I meandered, slowly, through the neighborhood.¬†When we finished and headed back,¬†the PT asked me how I felt about the driving and I told her¬†my honest opinion (seeing no problems). Never¬†assume a professional PT sees your driving¬†the same way. As we met to discuss the results with my Mom, the PT explains her two things that she sees as a concern (which I do not see in context of the driving experience how they fit in properly to what I thought was the main concern : the grip and strength of my hands!) As soon as I figure out that I still do not have the official okay to drive and that I must return one more time, I bluntly express my point of view in one short sentence. I set up my next drive for the 21st and cry in the elevator–expressing my frustrations to my Mom. There are some things I just do not understand and what they want to see in these evaluations from me is what I do not understand.

There was good in the morning though…I can drive normally in my car as long as one of my parents is with me. Talk about feeling like being back in high school, but I am very thankful for this outcome (even if it is still an inconvenience to our schedules.) By driving ¬†the roads, I can now get back to feeling like a normal driver and hope I spend less time dreaming doubts and trusting that God can use this time to help me gain more confidence as yesterday was my first time “on the road” since August.

But yesterday I also felt my conscience tug at my heart over my attitude at the PT right before we left. I did not mean to bluntly express my opinion, but it came out. And I feel bad for it; I hope I did not ruin her day. I am sure it was just as awkward and maybe frustrating for her to navigate a deaf person around a neighborhood and through cones in a parking lot. In my childish actions in response to the PT’s professional opinion, I see how wrong I was and asked God to forgive me. ¬†Taking my driving evaluation as a lesson: These are events that I ¬†cannot go back and change, but instead, learn from it and set out focusing on doing better next time.

Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give¬†grace to those who hear.” ~Ephesians 4:29


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

6 a.m. to 6 p.m.

Yesterday I¬†was up before the sun. Actually, my parents were too as the sun did not come out until we had already started down the road towards Cincinnati. It was a lovely morning though. A few times on 42 South,¬†while sipping my coffee, I thought, “This is like a picture off a postcard.” Then we hit the interstate; at least traffic was flowing well and we made it to Children’s Hospital right on time for my day of appointments.

Yesterday marked three months of being on the chemo treatment, Sirolimus. This chemo requires me to have a follow-up appointment every month with my doctor, where I present them with my log of times I take the medicine every day and other recorded health issues I keep track of during the month. I am still doing well on the drug considering all that has happened over this past month. My main doctor asked me my thoughts on it again–if I thought it was benefiting me and if I wanted to continue. Last month’s check-up was¬†easier to confirm better answers as I had MRI scans to help me clarify that tumors were looking stable and it was a benefit to continue on because of that fact (and also two months was not enough time in my mind for a fair trial of the treatment.)

But yesterday I just honestly said, “I don’t know.” There has been more changes over this past month that have been more consistent: the pressure in my lower spine, the increasing weakness/numbness in my hands, more hearing loss¬†in the right ear,¬†worsening¬†lack of bowel movements. Plus the steroids are making my stomach feel heavy and¬†my balance is worsening.¬†By¬†the time I saw my main doctor around 2:30pm (after the¬†whole team throughout the day otherwise), my brain could no longer function in hard questions. All I could think of¬†was how¬†I am not certain¬†what this next MRI in November will show; it is hard not to wonder. I did decide, however, to continue on the chemo as planned until the MRI on November 5th. I will see my doctor soon after and we will go from that point whether or not to continue the Sirolimus.

Yesterday also included seeing the whole¬†“team” of doctors.¬†I¬†do this every six months.¬†I see my main doctor and his small team that I communicate with via email every week for labs and questions; I see four other specialists for different areas plus my social worker.¬†It gets repetitious to have to¬†talk about my problems to every doctor, but they ask different questions and¬†then take what answers I give them, plus their own observations, and discuss¬†together different concerns and possibilities.¬†I cannot tell you what a privilege it is to be a patient with a team such as this! They truly have my best interests at heart and¬†I¬†know this is true for all their patients…just very humbling at¬†how much¬†they circumference and still take time for each individual. ūüôā

Usually these “team” doctor visit days¬†start around 8am or so and we usually get out by 3pm (on good days).¬†But because I have had high blood pressure, a bit of last-minute things were added to my schedule before I could leave. And so by 3pm, I was on my way¬†to the radiology department for my ultrasound/x-ray…and in my fatigue and hurried walk, my right foot hits the floor hard, resulting in tripping and flying to the floor. I was fine, but because¬†I had fallen two days earlier, I reopened a wound on my left knee…which gave me a nice mess this morning as I have still been bleeding (thank you blood thinner pills.) Good news is that I think we got that mishap under control, but it added more time to get out of the hospital yesterday. (A big thank you to my interpreter as she was with me the entire day as well.) We finally found ourselves leaving Cincinnati around 6pm. It did not take me long to fall asleep in the backseat.

Although yesterday was a majority of just talking…as the biggest problem of numbness in my hands and feet they can’t do anything for in relation to medicine and I will never regain that lost sensation…I feel that it was a good day (long), but good.¬†Over the next month, I¬†can pretty much guarantee more¬†changes–whether physical or even to the routine agendas like when to get lab work completed. I can only take it but one day at a time, one step at a time.

P.S. I read this verse earlier in the week; reading it from a different translation made a certain phrase stand out. I emphasized it in bold.

I have been crucified with the Anointed One‚ÄĒI am no longer alive‚ÄĒbut the Anointed is living in me; and whatever life I have left in this failing body I live by the faithfulness of God‚Äôs Son, the One who loves me and gave His body on the cross for me.

Galatians 2:20, The Voice


Filed under Adjusting to NF2, Hospital Trips

High Blood Pressure

I have never struggled with high blood pressure before. In fact, I don’t even understand how it reads. It is like a fraction, but every time is different…I don’t even know what a normal range is supposed to be.¬†The arm gets¬†squeezed: the pressure put on tighter, tighter, tighter…then in a few seconds, everything releases back to normal. The nurse says my number out loud. “Is that good?” It’s all I can ask, utterly clueless. Usually I get a nod of approval, but today I got a shocking remark from my Occupational Therapist, “Wow! Your numbers are high!” After a few more “just in case” squeezes, it was decided that I get rechecked after my test.

This was no ordinary test–it was a driver’s evaluation test.¬†At my last doctors appointment on August 27th, there was concern by one team of doctors about the way I was walking.¬†Due to the concern and just the wholeness of my body, they¬†had me stop driving until I¬†had this¬†driver’s¬†evaluation.¬†I have had one before after my first DVT, but this time I agreed to the test¬†rather than the last time¬†where I felt forced. However, when I got home, my brain starts¬†thinking.¬†Like LeFou tells Gaston in¬†Disney’s¬†Beauty and the Beast,¬†“A dangerous pastime…” to which Gaston replies, “I know.”

I¬†get to thinking how unfair this predicament¬†is…even¬†though¬†I understand the concern presented as¬†there is a concern¬†for other people’s¬†safety in my driving…not just me, I deem¬†it unfair and I let¬†my thoughts turn angry. Yes, I admit it. I was¬†angry.¬†I felt singled out. And after today, I just don’t understand.

Last¬†night I let part¬†of¬†the pressure go. My parents just listened as I¬†cried, talking with my mouth full of food how about it all…the unfairness,¬†the¬†thoughts I still¬†battle in self-esteem,¬†and I¬†even said, “My handwriting¬†is like a five-year old.” (Of course I probably looked like one the way I was eating). I bring up Denver days: “They were my glory days.” Perhaps that has been part of this week’s inner battle–I am trying to relive my past when I felt free.

Maybe that is why I love driving. I am in control. Sweet sixteen and you are on top of the world as you feel ultimate freedom. How is it that¬†driving¬†can have this big of¬†an effect on one’s life?¬†Freedom:¬†To be told¬†otherwise is like being grounded.¬†And that is how I left my driver’s¬†evaluation, except I had done nothing wrong. In fact, I passed everything. There was just concern about the numbness in my hands, but I still do not see why it causes me to have to still not drive until I take an actual test in a car on October 7th.

But life is not about the fullness of understanding–it is about the fullness of faith. It is not about the comfort in freedom or the glory days of the past–it is about enduring in hardships and pressing on towards the goal. Life is not about control–but complete surrender. And I am only beginning to grasp what these mean in my own what I deem unfair, what I cannot control.

And so I pray for sweet surrender, because only then will this body find peace.

When [Jesus] calmed people’s situations, it wasn’t simply an end to their painful circumstances; he didn’t just help them out of their problems. He made them whole again. These people who Jesus impacted experienced a fullness they had never begun to imagine possible. That’s what the peace of Jesus is about–filling up the taker and making them whole.

*Matthew Paul Turner. Beatitude: Relearning Jesus through truth,contradiction, and a folded dollar bill. Grand Rapids, MI: (Revell, 2006. pg. 34)


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

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


Filed under Adjusting to NF2, Family Times, Hospital Trips