Tag Archives: MRI results

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


Filed under Adjusting to NF2, 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

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.)


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

January MRI results.

Hi guys.

Just wanted to give you a heads up about my doctor appointments yesterday. It went well and best of all, I got to spend the day with my dad. ūüôā Ok, so not the greatest father/daughter date but the conversations were well worth the drive.

First, my MRI showed stable results. And while that is a praise, it is also a bit of frustration just because of the increasing side effects…mostly numbness/weakness/finger curling¬†in hands, lack of bowel movement on its own and pressure in the neck. This means that the tumors are probably changing density or hardening–there is¬†no way to¬†ever know that but we just have to assume that¬†something is still causing the pressure on the nerves even if they are “not growing.”

So, with my main doctor–we discussed all my questions and current observations about things I notice changing.¬†We discussed again my two possible treatment options. I have a much to think and pray about in the next few weeks. I need to reread the papers¬†my doctor gave me at the beginning of January and¬†review the¬†treatment side effects, talk with my parents and ask a few other questions to another doctor since I will now be on Warfarin blood thinner pills.¬†Not saying that¬†I will do treatments but not saying I am not either at this point. I just¬†need time to really think and pray about things, as yesterday my¬†mind was a bit overwhelmed. Sure, I got all my questions answered, but left with a full mind…because it is my choice; my doctor is not telling me what to do–so I want to be wise in the decision-making process.

As for everything else we discussed, here is a short synopsis:

I am on the last 2 weeks of the steroids. I started¬†today as¬†the first week¬†where I¬†decrease the amount taken everyday. The following week,¬†I go every other day–then I am done and off the pills.¬†One less pill to take in the morning: YAY ūüėÄ

Today, I started taking Warfarin (pills) with my Lovenox. I am officially starting the transition off the Lovenox shots! YAY. ūüėÄ

I saw the pain team again. Because I am on such a low dose of Lyrica, they¬†added one more tablet a day to see if that helps with the tension and numbness I am having…especially the pain in the neck area. We also discussed different stretches for me to do to help loosen my shoulders. I also need to work on my posture and keep my chin in when sitting or standing as that is all related to the shoulders and posture. Time for me to get back into stretching exercises in the morning and also, I am going to restart on my own the physical therapy exercises I remember to help get my left leg muscles back to working.

A day like yesterday can be long, strenuous, and mass information–but I like my doctor team so much that it is like talking to friends. They let me ask my stupid questions, laugh with me as I share stories and offer encouragement when I am frustrated (or crying). I am so thankful for all of¬†them.

And that ends my January chapter…one month of the new year down–11 more to go. ūüôā Thank you for all the support and prayers¬†for me¬†and my family…I am so thankful for you too.

More to come…


Filed under Adjusting to NF2, Family Times, Hospital Trips

MRI results.

My apologies for those who have been waiting for the results of last week’s MRI. I had no time to process things as my mind last week was so “go-go-go” for the art festival. I just quickly dismissed everything in my¬†mind¬†that got in the way. This week has been different: lots of rest and lots of thinking. Plus a lot of¬†different emotions–a bit of fear, a bit of frustration, a bit of anger, a bit of laughs, a bit of peace, a bit of hope. For the beginning of this week, it was the negative emotions. I guess I could¬†blame it on lack of sleep, but I think I¬†just finally started to process¬†from last week’s appointments. There is still much to process and pray about, but after many good cries earlier this week…I feel refreshed for the continuing journey. Still doesn’t make the road ahead an easy one, but I know God will help me through it day by day.

So, there is some good news from last week: my blood clot is all gone [except just a little small spot], but I “graduated” from blood thinner pills!!!! Yay! No more finger pokes for blood counts, no more nasty tasting pills! I am still to wear the compression stocking for a while (ok, like a whole one more year!!), but we are looking into ones that are almost accommodated (to borrow the term)–meaning different ones from other companies so that I can start to put it on myself. Eventually leading to the hopes that I can move back¬†into an apartment at some point. ūüôā That is exciting!

Also, praise: the MRI scans for the brain show no growth! My doctor said that surprised him really; He was expecting a few different turnouts. Just goes to show there is no predictions in this disease. Oh wait. I take that back. I predicted that they would want me to start Occupational Therapy for my hands (especially my left hand). I was right. But I was expecting it, so I was not upset about it. In the long run, it is a good thing.

I knew two months ago that my hands are starting to slow down and continuing to weaken.¬†My job is becoming more difficult in working cash transactions. My typing is starting to slow down, let alone using the shift key (and reaching for “a’s” and “s’s”) with my left hand is not so great. I think the first key that will stop working on my computer is the backspace button. ūüėČ I am still able (thankfully!) to maintain function, like putting in my own earrings, makeup, tying shoes, etc. It is nice that we are not in cold weather yet. When I get cold hands, they just lose all function. But we are not to that point yet…still enjoying the rest of summer! ūüôā

Anyway, yes, I did start OT. My first session was on Wednesday. Mom and I ventured down to the Liberty Children’s Hospital for a late night session. It went well. Better than I was expecting. The main issue is trying to strengthen what muscles I have left–trying to preserve it as long as possible. Since April, I noticed more weakness. Typical I thought, until my left ring finger started to curve in. I noticed that the first part of July.

Here is the anatomy of my left hand. Notice the muscle atrophy of the palm and how my bone at the bottom of my hand by the wrist stands out. My thumbs are also like this. The muscle stops receiving the messages from the brain to function, due to the tumor wrapped around the nerve that coordinates with the area. The tumor wraps around the nerve, cutting off the messages and thus, atrophy. I think I would have found anatomy class interesting. Now I regret not taking the course in high school or college. Anyway, also, notice the ring finger. This is the position that it is in at all times. I had already been doing some “therapy” exercises on my own such as trying to play scales on the piano. Just keeping it stretched out and moving. There is nothing to do about the numbness, just mostly keeping them moving.

Although you cannot see it in the pictures, I would like to point out the best feature of my hands (both hands!!!) DOUBLE JOINTED FINGERS!!! A lot of my own accommodations for getting around to do things is being double jointed. For example: When I put on my earrings in the morning, I grip the back of my earring but I cannot hold onto it without using my double jointed thumb for more stability. The OT was taking measurements for different exercises and told me not to cheat, because I was using my double jointed moves. But it is hard to perform normally, because I have already found ways to accommodate living daily and so it seems normal to me until someone points it out.

This is my right hand. I also have atrophy in the palms and numbness but my fingers don’t curve in yet. I was just taking this picture so you can see the atrophy in my thumbs. Both are like this, but my right hand is the worst. See the dip? That is where the muscle used to be. It started in my right hand when I was a sophomore in high school, but it was not until later college years that it started to get worse. Just a part of me now. It used to bug me, but I don’t notice it anymore.

So, I have several strengthening exercises (both finger and hands) to do daily with a soft putty. It is in no way soft! It is quite the workout! And also, I wear a splint on my left ring finger to help strengthen the muscles. I go back for another session August 29th.

The best part of today was upgrading my phone. (finally!) It is just a simple T9¬†phone from Verizon. Nothing fancy, except the orange cover. It was that or black, but I figured orange would be good to find in case I drop it or lose it. Funny, the guy said the orange is labeled as “Hazard orange.” Guess it is a good fit for my phone. ūüôā The keys are a nice size and separated a tad so texting is smooth so far. I am thankful for that as that is a big part of my communication. I am still looking into a Captel landline phone as well.

The MRI of the spine showed that the tumor growing on the inside of my spinal cord at the C3-C7 area¬†has grown. Also, the tumor is producing fluid which is adding extra pressure on the spine. My parents have noticed me curving my shoulders more. I have always had bad posture since the surgery in 2002. But some days even more I can feel tightness and pressure so standing up straight is difficult anyway.¬†I am to watch my breathing. Not being obsessed about it, but keeping watch if I ever find that it is hard to breath or having pain breathing…but the tumor is slow-growing so I just have to keep that in the back of my mind.

Treating this tumor, I have a few options. I must be thinking and praying about these options before my next MRI on the spine only in October. There are two oral chemo pill options, a round of radiation (but unlikely), or have surgery to remove the tumor. Surgery is a last resort, but we also don’t want to wait until I have respiratory or diaphragm¬†problems, so it is up in the air right now. I really have to sit down, write out the pros and cons, think and pray about the options and talk with my family…then talk with my doctor in October. I want to be prepared to discuss, because if there is an increase in size or more fluid, then action must take place. So, if you remember, please pray for me (my family and doctors) on this as it is important.

I will say one thing though: God sure has blessed my physical body. My doctor said that he knows¬†my case, but for some other doctor to come in…look at my MRI scans just from the spine, the first question he thinks they would ask is, “Can¬†she walk?” The answer is yes. Sure my right ankle continues to curve in and weaken, but I can walk. I can even¬†walk fast (my version of running), climb stairs, get up and down¬†off the floor and chairs, lift things, stand on my feet for a week straight while painting,¬†drive¬†and so much more. My doctor emphasized that my MRI scans do not show who I am.¬†Coming from him–after just discussing all the things that are going wrong,¬†possible treatments and things to watch for…that meant a¬†lot. More than he probably realizes. I think it was God’s way of saying, “My grace is sufficient for you. For my power¬†is made perfect in [your] weakness.” (2¬†Corinthians 12:9a). I surely cannot do this without¬†Him.

More to come…


Filed under Adjusting to NF2, Hospital Trips