Category Archives: Adjusting to NF2

January 14, 2013 · 10:32 am

I have decided.

Hi everyone. Just wanted to give you a quick note this morning before I head out for the day. I have to go down to the Liberty Children’s campus (about an hour drive) to get some lab work done and then my MRI is at 4pm. So this will be another long day, but needs to be done. I actually fall soundly asleep during my MRI’s so I really can just look forward to a few hours nap. 🙂

I have made my decision about whether or not to have the surgery to remove the clot/see if a stent is needed. I really struggled with my decision. My darkest fear is being put to sleep…bad experience from the last surgery to place my medi-port in caused this. I talked with my family Saturday night and was really honest with them. I think too I was still not understanding how the anatomy and procedure works, so I got a more clear understanding on that as well. But I still had to decide.

As I got in bed, I made a list of pros and cons and did some thinking. In the morning while I was doing my devotions God kept bringing me back to Psalm 4:8, “In peace, I will both lie down and sleep; for you alone, O Lord, make me dwell in safety.” I looked at my list of pros and cons. If I truly did have more pros than cons, and if the fear was the only thing holding me back…I figured that was pretty lame. God gave me an overwhelming peace about my decision. Through the course of the day–discussing more things with my family…calling my sister and thinking of things ahead, I see now that this is a good thing. There are many positive aspects of doing the surgery and so being now at peace, I am ready.

I do not have a date yet, but it will most likely be at the end of this week. I will keep you all posted. Thank you for your prayers this weekend about my decision. Please continue to pray for my family as this is a lot for them too and quite frankly–we are exhausted.

May all your expectations be frustrated.
May all your plans be thwarted.
May all your desires be withered into nothingness.
That you may experience the powerlessness and the poverty of a child and sing and dance in the love of God the Father, the Son and the Spirit.

*Prayer over Henri Nouwen by mentor.

More to come…

9 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

Tagged as , , , , , ,

January 12, 2013 · 6:30 pm

Home :)

Although last night might have not been our best evening. Mom got sick yesterday morning with a 24-hour stomach bug, so she spent the whole day at the hotel. Dad came in the early afternoon to the hospital to be there when we discussed surgery options with the interventional radiologist. I am also so thankful he was there to help me figure out the medicines as they sent me home on the blood thinner shots called Lovenox. I got discharged around six pm. By that time Dad was not feeling well, so thank you everyone for your prayers, because God protected us on the way home. I fell asleep and Mom was sick in the front seat, meaning Dad was on his own feeling sick yet having to drive an hour and half home. We had to stop by Walgreens in Xenia for more of my medicines, where Dad did get end up getting sick. So there I sat in the car with two sick people. Not our greatest evening. But we made it home.

My sister came over to help. I am so thankful for all she did last night and today: laundry, dishes, helped me put on my compression stocking and helped get my parents get their toast and ginger ale. Coming home would not have been so smooth without her here. 🙂 She helped me get my shots…my stomach is turning nice shades of blue again, but I think I toughened up from last year as the shots don’t sting as bad this time. 😀

Things seem pretty normal now. Had a great nights sleep in my own bed; did some reading today and took a nap; got a few things sorted out in my head (makes you feel like you are actually organizing)…but it is the little details about upcoming painting projects and the like (more to come on that!). I am now watching the Broncos vs. Ravens game (what a game!) and catching up on emails (thank you everyone for your prayers and encouragement.)

But there is still the lingering decision I have to make: to have the surgery to remove the clot/stent placement if needed or not. I have to make my decision by Monday. So as long as Mom and Dad are feeling better by tomorrow (they are doing much better than a few hours ago), we need to sit down and discuss things. It is like it should be an easy decision, but it is complicated. I lean in both directions for and against, but I want to make sure that my decision will be the best and most beneficial in the long run. Because in all truthfulness, I don’t want another blood clot. Even now, I see how God protected me. The clot went through my heart to my lung! I would have never guessed. I felt nothing.

In making my decision, I can’t guarantee that I won’t get another clot and neither can doctors…but I do want to have clear thoughts about steps that could be possible measures to helping prevent another one. If that makes sense. My thoughts keep going round in circles. So more prayer is needed as I desire to have peace about the decision. Thank you all for your continued prayers, support, love and encouragement. It means so much to me and my family. I will keep you posted in the days ahead.

2 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

Tagged as , , , , ,

January 10, 2013 · 11:52 pm

Quick update

Just wanted to give you a heads up for what is going on and tomorrow before I head to bed. The ultrasound showed that the blood clot only goes just inside the pelvis. Nothing more up farther, just then goes down to below the knee. But that is good news that there is not any in the stomach area! So I am thankful for that!

Tomorrow I see an interventional radiologist to discuss the clot further. A few things to discuss is the possible surgery to clean out the vein. If so, that would be done at the end of next week. I would be on the blood thinner shots for the week to soften the clot, then have the procedure if I decided. Either way, from here on out I will be on an oral blood thinner pill called Warfarin for the rest of my life.

The other aspect of seeing the doctor tomorrow is to discuss the terms of seeing (while in surgery) if the femoral artery is pressing/pinching on the femoral vein which could be causing pressure. A stent could be placed if that is what seemed to be a problem. Because the blood clot is in the same leg/same area but I am not on hormone pills or chemo this time around, it just leaves room for that question.

I should learn more tomorrow, ask my questions and either way, hopefully go home by the evening which is most exciting! Thank you for your prayers as we still have this appointment tomorrow and my decision to make. I will post more when we get home. 🙂

1 Comment

Filed under Adjusting to NF2, Hospital Trips

Tagged as , , ,

January 10, 2013 · 1:30 pm

My last 48 hours

(To Merlin:) Mr. Fish, did you die?

Dory: Sorry I was a little vague on the details.

That line in Finding Nemo always makes me laugh. The good news is that I did not die. No jellyfish stings either. The bad news is that I currently sit in Children’s hospital with a massive blood clot in my left leg. The ultrasound yesterday showed it goes from my pelvis area where it was the last time down to my lower calf. I also was having hard breathing/shortness of breath so yesterday I also had a CAT scan which showed a small clot in the left lung. Thus, I have another ultrasound today at 1:30 to see how far up the blood clot goes, because it is possible (highly likely) that it is in my stomach. The decisions for everything else after that are based on what the ultrasound shows.

How did this happen? Not sure. Could be many things, even just having the chronic constipation problems could be a factor. There is a lot to weigh in. How did my past 48 hours go? Well, very random. Mom and I were just here on Tues. morning for a follow-up appointment with my doctor about what happened over Christmas. I knew my constipation was coming back but felt normal. When we got home after dinner, my stomach started to inflame again. Felt like a huge boulder in my stomach…just felt sick so I just sat and watched some movies and did a small load of laundry. By the time my laundry was done, just walking around the house was a chore. I was so out of breath and just felt nauseous. I did get to sleep after a few runs to the bathrooom, but was not feeling much better in the morning. Standing for more than few minutes just wore me out and turned my feet a nice shade of blueish-black. I had had pressure on my back and legs the night before, but when it started getting worse in my left calf I asked my mom to look at my feet.

I know this is God’s timing, because my dad never comes home for lunch just to say hello, but since he was there he checked my feet and called my doctors. That is when they ordered the ultrasound so that way they could eliminate anything if there was not a huge problem. But in doing so they found the problem. So, God’s timing again, was just so perfectly ordianed. I just can’t fathom it sometimes. Sure, this is upsetting. I cried yesterday and just had a hard time. After spending a whole day in the ER there in Xenia, they transported me by ambulance around 10:30 to Children’s. As I lay in the back by myself, a song came to mind. “With Every Breath”. I took comfort:

When the night seems so long (throw your hands to the sky)
You can sing a new song (wipe the tears from your eyes)
When you’re weak, He is strong
He can heal your wounded soul
And calm the storm inside

For all your times of laughter
In every hopeful prayer
When the world weighs on your shoulders
Through sorrow and your despair
With everything, with every breath, praise the Lord.

And that is where I am right now. I am not in pain, which they are happy to hear. I just have to have patience and will have to continue to pray for guidance in the important decisions ahead and for doctor’s to have wisdom. My parents are here with me, so that is comfort too. 😀 For now that is all. My ultrasound is soon, so I am signing off.

*”With Every Breath.” City on a Hill. Sixpense None the Richer/Jars of Clay. Provident Music Distribution, 2000.

6 Comments

Filed under Adjusting to NF2, Hospital Trips

Tagged as , , ,

December 29, 2012 · 12:00 am

I’m home!

Yep! Got discharged about 9:45pm and we left shortly after that. Sleep finally found me on our drive home, but still exhausted. We all are. Got home not too long ago and I am ready to jump (not literally) into bed. My own bed. 🙂 I am feeling much better compared to how I entered the hospital/the last two weeks, but it will still take recovery time and getting used to the new stomach/digestive medicines and the steroids. Doctors are now aware of the problems I have been having and will keep in contact with me about how I am doing. My main doctor was out-of-town so he has yet to be notified about all this too.

Thank you for your prayers. The doctors there are so kind and want to help me feel the best and maintain the best I can as long as I can and I am thankful for that too; it is a huge blessing to me and my family.

And I just cannot thank God enough for my family. For all their love and care, texts of encouragement, and by replacing a short trip to see grandparents and cousins to hang out with me in the hospital. And those extended family members who understand the sacrifice they had to make to help me feel better as it was in part a sacrifice for you too, thank you for your love and prayers.

It is in moments like these that I do not understand why my problem had to come at a time like this, but trusting good has come out of it. Because God is good. And that is what I am going to think about as I fall asleep. I am going to trade my guilty weight of “bringing down the family and ruining the weekend” with thoughts of God’s goodness and grace.

Goodnight everyone.

8 Comments

Filed under Adjusting to NF2, Family Times, Hospital Trips

Tagged as , , , , ,

December 28, 2012 · 12:10 pm

Early update…

Hey guys. Thank you for your prayers!

Last night was a bit crazy. Ready for one big run on sentence? 🙂

We got here right around 8pm, check-in process got confused about the MRI order, waited a few hours in the ER (thanks Mandy for keeping us company) and finally got in a very fast 20 minute MRI (amazing!); came back to ER and waited for results, got an X-ray of my stomach, got in some lab work, saw the ER doctor, got transported to a room upstairs at 2:30am; answered more questions, discussed issues at hand, got medicines; family left to hotel, got ready for bed 3:15am; had another lady come in and had me sign more papers, etc–got my port accessed at 4am, went to bed but woke up at 6am to take my medicine* (will explain); went back to sleep, but remember the nurse coming in to take vitals; more sleep but then was awake at 9am to take my morning medicines and my first dose of Mirlax. 🙂 I should have gone back to bed, but I decided to eat breakfast; then nurses and people started coming in so in the midst of this, plus trying to finish breakfast, I had  a bowel movement and I just really wanted to celebrate. 😀

So, real fast, the MRI showed no big changes but the tumor in the spine at the base of my neck seems a little bigger, so they started me on steroids* to see if they can get the swelling to go down. I have also noticed a few new areas of numbness, pain in back and different places of pain spasms since my last MRI so they would like to take a look at this now while I am here and make sure that when I leave, I have the knowledge and medicines to help keep my body going.

I will be seeing some doctors from different areas today, to discuss and for them to evaluate. I am enjoying a bit of quietness now, and my family is here. 🙂 I may or may not get home tonight…so I will just write when I get home.

Thank you again for your prayers and encouragement.

4 Comments

Filed under Adjusting to NF2, Hospital Trips

December 27, 2012 · 6:19 pm

Today’s events.

This morning I went to the dentist. It is always an interesting experience probably for both me and the dentist. To have someone explain why one half of their mouth is numb but not the other might seem strange, but it is even stranger to be the one to feel it. The good news is that I had no cavities and he showed me a new way to brush my gums on the left side of my mouth where the numbness is. I tend to brush them harder since I cannot feel them and that is not a good thing. I left with happy teeth and a new toothbrush. 😀

Please keep my family and I in your prayers tonight as we travel down to Cincinnati. My stomach problems due to the lack of bowel movements has become a point of concern. Yesterday I felt like a balloon. No amount of fiber (or prunes) or Colace is seeming to work, which is why the doctors want an MRI tonight and most likely an overnight stay in the ER to figure this out. The problem has been happening off and on for a month now, but it is getting worse, so it is time to see if the scans will show anything.

Thank you for your prayers at this time.

4 Comments

Filed under Adjusting to NF2

Tagged as ,

December 25, 2012 · 7:50 pm

Christmas all year long.

DSCN0977

Yesterday’s Christmas Eve service was the same as Sunday. Off I went Sunday with my family to their church so I braced myself for a service without interpreters, which I knew. The pastor usually leaves his sermon notes copied off on the table in the foyer, but there were none left when we arrived. I just watched the praise team from the balcony where we sat and read the words to the songs, occasionally hearing the beat of the next stanza so I could try to sing along. The sermon started and I just followed the three main bullet points of the sermon about the particular Advent candle. I had my Bible so I read some passages and found amusement from the boy sitting in front of me trying to figure out where the exact middle of the Bible was–he ended up in the middle of the Psalms. No surprise, I told myself…seems like I had done that myself when I was his age. We took communion and then the praise band did an acoustic version of “O Little Town of Bethlehem.” They sang all the verses–and even though I could hear all the words, I just sat there and listened for most of it. Just letting the words sink in. “O come to us, abide with us, our Lord Emmanuel.”

Last night was different though the same church, same pastor, same seats. Except this time my attitude was different. In the car, I kept thinking to myself–this is ridiculous! I could just stay at home and read my Bible and sing a few hymns to myself. I felt more like a hypocrite really–wearing my favorite skinny jeans, cute sparkly top and sparkly shoes. Like dressing up for nothing…was what my thoughts were. The songs had no words on the power point; there were no bullet points to the message; and worst of all, I forgot my Bible so I couldn’t even read any passages. I just sat there. My right hearing aid was not right and so I had to take it out; my shoes were bugging me (and my sister told me they were making noise as I was trying to take them off); and I just really wanted to leave. We did not even have candles to hold when they started the song and proceeded with the congregation lighting each others’ candles. The people in front of us turned and realized we had no candles. They offered theirs. Another woman did the same. When all the candles were lit, we sang Silent Night.

IMG_2381

In the candle glow, I realized that this is what Christmas should be like–sharing our candles with others so they too have light in their time of need. It brings hope and love and peace. The Light of Christmas isn’t meant to burn out the 26th of December. The message lasts all year.

From my house to yours: Merry Christmas!

DSCN1003

DSC04733

DSC04678

DSC04709

2 Comments

Filed under Adjusting to NF2, Family Times, Muffy, Random

Tagged as , , , , ,

December 21, 2012 · 9:28 pm

The First Day of Winter

I am sitting here in the basement with the Christmas tree in my view, the fireplace is on and it is snowing outside! Yes! Finally! Last year, we had none. Nothing. Coming from Colorado, well, it gets to you. It has been snowing all day. Somewhat sticking, somewhat wet, somewhat blown all around from the wind. But it snowed. 😀 How convenient. On the first day of Winter no less!

I have to admit, I could make up things like excuses for how “busy” things are around here. I could pretend to be bustling with activities that cause me not to be able to write (ok, but I did go Christmas caroling with my church and to a performance of Handel’s Messiah with my parents.) 🙂 In all honesty though, I have not been feeling too well. I have been struggling with some physical things that I can’t discuss at this time. I feel this problem has built over time–most likely from my new medicines–but last week was the highlight of it all. And I felt sick…still do most often, but not at the present moment. Another honest blurb–I am craving a Sprite! I love peppermint tea, but I just am in a need for Sprite! But, because the eye medicine makes pops taste like metal, I cannot. Thus, adding another momentary frustration to a sick stomach feeling. You get the drift.

Not the greatest way to be spending the holidays, but to keep my mind off how I feel I wrote most of my Christmas cards, did some reading, and watched a lot of Christmas movies. Nothing too productive, but I did enjoy watching for the first time the classic film, Christmas in Connecticut. I think it might be one of my new favorite holiday movies! Speaking of movies, I wrote about the book, “52 Little Lessons from It’s a Wonderful Life” when I first started it two weeks ago. What a book! I read a few a day…last week, some days the words would just pop off the page. The little lesson would hit directly home…mostly because I was feeling a lot like George…wanting to do big and great things or travel the world but feeling stuck at home. My family resembled “Clarence.” Just again reminding me that I am not a burden and that it is ok to share my feelings and hurts–because then they understand what I am going through and why some days I am just a tad grumpy.

But I am learning. I am learning to be open, to share. But it will take some time and a re-wiring of the normal thought process my mind usually goes through. Seems like a great time of the year for it…taking time to step back, rewind and think about the joy of the Christmas season.

Music has always helped me rewind. This is from one of my favorite Christmas songs, “Christmastime” by Michael W. Smith, 1998.

Ring Christmas bells
Ring them loud with the message bringing
Peace on the earth
Tidings of good cheer
Come carolers
Come and join with the angels singing
Joy to the world
Christmas time is here again.

P.S. http://www.youtube.com/watch?v=XFq3GJicC78

More to come…

Leave a comment

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

Tagged as , , , , , , ,

November 24, 2012 · 3:40 pm

Thanksgiving Lessons 101

This Thanksgiving was a very special time. We celebrated my Grandpa’s M.’s 90th birthday with a surprise family reunion. And he was surprised!!! 🙂 What a great time it was to have the family here. I just don’t think it could have been any better!! Dinners ran buffet style through the kitchen; we somehow got all of us to fit together in the same dining room area/hallway so we could all eat together; we enjoyed chatting, pictures, playing games with the kids; and most of all, we enjoyed the precious time spent with Grandpa and Grandma. 🙂

Grandpa has taught me so much over the past years, but these are my top favorites: Don’t put your elbows on the table and collecting coins is a cool thing. Grandma taught me that it is okay to eat dessert first (you only have one life to live) and writing letters brightens the day. And together they taught me the most important lessons of life: Give and you receive, trust God in all circumstances, and to honor the ones you love as you honor God by doing so. Grandpa and Grandma have been married for 66 years. And they still love each other, care for each other. It is such a testimony. I have been blessed with not one set of grandparents, but three who all have shown me the same lessons of faith and love in their own special ways. Each give me a glimpse of something in my life that I can improve on. During the family reunion, Grandpa yet again showed me a life lesson, but this time I don’t think he realized it.

I must say it was refreshing to not be the only one with hearing aids. I actually had some good conversations about hearing aids with my uncle. It was fun for someone to “understand.” But Grandpa showed me a different way to understand the communication problems that come with lack of hearing. The first night we all were together–after the “SURPRISE!!!”–things were still on the energetic level and it was loud. I could not hear anything but the constant vibe of the family chatting and laughing murmur in my ears. That might be hard to understand, but it is hard to explain. Anyway, after giving my hello and hugs, I went over to sit by Grandpa. I can’t speak for him, but I wonder if the murmur was the same for him–either that or it was just still complete shock that we all were there. 😀 We exchanged a few sentences, then just sat quiet. I noticed as he looked around the room that he was just all smiles. He was not even engaging in any conversations, but still had joy in his face just as if he were chatting with someone right next to him.

I did pretty well at Thanksgiving. I had my hard moments with hearing but for the most part I did well, just hopping from one conversation to the next. It was last night when my frustrations reached a peak. After the extended family left, we decided to play Mexican Train (dominoes game). I got the rules down and we started to play. Then things started changing like “you have to cover the double” and then I said, “I don’t want to cover the double, I want to play here.” That kind of started it. By the next few rounds I had one question about the trains and doubles that I was trying to get an answer for, and everyone was telling me answers at the same time. Finally, after much frustration, we got it quiet and my brother-in-law restated why we had to put the trains down if we can’t cover the double and it clicked. I finally got it.

I am not blaming my family…they are not at fault (although we should work on the talking at the same time part). I could have not raised my voice in frustration of not understanding but because often in loud conversations I can’t get my voice heard, I get so used to shouting louder than I should just to be heard. I have always have had that problem. I just want to be heard. But Grandpa’s approach was the complete opposite. He does not shout to be heard, but when he speaks it is sincere and it is heard. So as the family left this morning I reflected on the past few days and how I see myself every time in these situations. I speak loudly before I try to lip read (which is my version of listening); I get angry when I cannot be heard and frustrated when I cannot hear or understand or know what is going on. It is a constant battle, but it is not for Grandpa. He showed me that you can live out James 1:19 and still enjoy life as if I had regular hearing.

Know this, my beloved brothers: let every person be quick to hear, slow to speak, slow to anger.

I have tried so hard to live out this verse, but I think it is now time for a new course of action: Be more like Grandpa, because Grandpa is an example of Christ’s love and humility. So thank you Grandpa for the lesson you taught me while you were enjoying your birthday festivities. I love you so much. 🙂

More to come…

5 Comments

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

Tagged as , , , , , ,