Normally, I like to give my MRI results in a full detailed account. However,in thinking of last week, the past few weeks, the past few months of complexity–I just want to tell you simple. In a few words…
My parents told me the results before my eye appointment, because I would be seeing my neuro-ophthalmologist and would need to discuss my questions and tell of my changes in the right eye vision. I suppose too, my parents wanted to tell me themselves and not have it come to me as a shock or surprise. It didn’t. “I saw this coming,” I told them. And even though it didn’t make it any easier, the fact that I knew in gut-feeling that my scans would reveal something, somehow made it easier to comprehend.
“There’s good news and bad news,” Dad begins. The good news: MRI of the spine showed stable. That is good news; although I have had more weakness in my legs, I probably would have been shocked if there was growth, because the lower half of my body (besides intense bruising on the legs from bumping into things) has not been a problem.
The bad news is that most of the tumors (besides the ones on the acoustic nerves, which wouldn’t matter to me since I am deaf already anyway) have grown…some significantly, some in areas by the skull that are likely causing pressure and the effects seen in my curling right hand, weaker left hand and numbness in the face/neck area adding to the choking, chewing and voice changes too.
These changes are slower, more “normal” to me to adapt to in everyday as compared to the right eye vision. The scans showed that there is a tumor growing next to the right optic nerve. “I am trying to see God’s goodness in all this,” I type to my best friend. At the time, I didn’t see it, but now I catch a glimpse…the fact that the tumor is next to the nerve and not on the nerve, is goodness.
This is what has been causing the grey veil and blind spots in the right eye. I don’t know much about eyes–I truly regret not taking Anatomy in high school or college, but there’s nothing I can do about that now; so I learn from my physical woes. I was told that your optic nerve is protected by a sheath, in which my right sheath is very swollen (thus pressure on the nerve.) I meet a surgeon on Thursday to discuss the surgery to release that pressure in hopes it helps the vision.
That is my last and only option. For the remaining tumors, I have no treatment options. “Your tumors will continue to grow,” my doctor tells me. We have had the discussion several times and I know that he and the rest of the team of my physicians feel helpless in the situation. He expresses his concerns on my current physical state and then asks, “What can we do to help, for you and your family?” Minutes before, I had just been in a state of tears and floods of emotions. Without a moment’s hesitation, I reply, “Well, you can start by getting me a limo and a personal chauffeur. That would help my Mom.” It made for good laughs; it released pressure.
I have not been abandoned though–I do have one more option: “Do you trust Me?” As I sat at the kitchen table that night with my parents, I started asking my questions as if I had already gone blind. My biggest was communication: I’m already deaf and couldn’t learn braille with my hands being so numb–was what I reasoned. How will we do this? Dad gets up and comes to my chair, gives me a bug hug and says, “Like this.”
It’s the picture of trust…”Do you trust Me?” Because in good news or bad news, God holds me.
Hold me Jesus ’cause I’m shaking like a leaf
You have been King of my glory
Won’t You be my Prince of Peace
~Rich Mullins
My Life with NF2 
I pray for you daily. God’s Spirit shines through your life. Sending a hug also. And another hug for your parents!!
And a hug to you! 🙂
Praying and sending cyber hugs to you and your family. 😍
Oh, Mel! What words can we possibly say? I can only encourage in the way I would want for you to encourage me, if the roles were reversed. “Turn (Keep) your eyes upon Jesus..Look full in His wonderful face….And the things of earth will grow strangely dim..in the light of His glory and grace”. I wish I had answers that would reverse this disease or help physically…but I don’t! I know God is good and I will be praying that your mind is steadfast on Him and that you will continue to trust Him….that He’s got you in the palm of His hand 🙂 We love you, Mel!
Our thoughts and prayers continue to be with you, Melinda, as you walk through this valley. Looking forward to seeing you on Wednesday night on our way down to Virginia.
Love you, Aunt Susan
Hugs to you from Wisconsin!! We are getting ready for the NF walk in Milwaukee Sept. 20. I copied and pasted your posting today for Grandma and Grandpa since they do not have internet when they are in Michigan.
You are a treasure to us and much loved!
May the Lord watch over you and you Family dear , there are no words to say accept God loves you and is holding you in his hands I know you can feel him I will be praying for you angel:)
MY SWEET SIS, THAT’S GOTTA BE THE WORSE FEELING ABOUT EVERYTHING YOU ARE GOING THROUGH RIGHT NOW; JUST FEELING HELPLESS AS I BEGIN TO REALIZE THE SIMPLE (BUT VERY HARD) REALIZATION THAT THERE IS NOT MUCH MORE THE DOCTORS IN OHIO CAN DO IN WAY OF TRYING TO FIND A SOLUTION TO THE PROBLEM. IT’S AS WE SPOKE THOUGH DURING MY TIME IN OHIO JUST THOSE FEW WEEKS AGO, IF GOD HAS IN HIS PLAN FOR YOUR LIFE TO HEAL YOU THIS SIDE OF HEAVEN, THEN HE WOULD AND STILL CAN… BUT IF HIS PLAN IS TO INSTEAD HAVE YOU HEALED COMPLETELY AS YOU STAND BEFORE HIM IN HIS HEAVENLY GLORY, THEN WHO AM I TO STOP HIM FROM DOING JUST THAT? I FIND IT DOESN’T MAKE IT ANY EASIER FOR ME TO RELINQUISH MY GRIP OF NOT WANTING TO GIVE UP YOUR TIME HERE ON THIS EARTH UP TO THE LORD ….. BUT, IT DOES HELP ME IN KNOWING GOD HAS YOU IN THE PALM OF HIS HAND!! I’VE OFTEN THOUGHT THIS FOR MY OWN LIFE, DEATH IS CERTAIN FOR ME JUST AS MUCH AS EVERY PERSON HERE ON THIS PLANET; BUT WHAT MAKES DEATH A BIT “LESS HARSH” TO FACE IS KNOWING WHERE WE ARE TO END UP IN THE END OF ALL TIMES. I FELT IT WAS OKAY TO POST THIS HERE SINCE WE HAD A RECENT CONVERSATION ABOUT THIS AS STATED IN OHIO WHILE I WAS THERE – IT HAPPENED RIGHT BEFORE WE SPOTTED THE CORN TRUCK COMING TO GRAZE THE CORN FIELD DOWN, REMEMBER?! THAT WAS SUPER FUN GETTING TO SEE YOU AND HAVING SOME TIME TO CHIT CHAT JUST THE TWO OF US;D I LOVE YOU MORE THAN WORDS CAN SAY!!!!!!! YOU’RE IN MY PRAYERS DAILY AS YOU CONTINUALLY FACE THIS EARTHLY BATTLE HEAD ON – BUT NEVER LOSE SIGHT OF THE FACT THAT YOU ARE NOT IN THIS ALONE!!! YOU ARE LOVED, CHERISHED, CARED FOR, THOUGHT OF, AND MISSED SO MUCH! HUGS FROM ME TO YOU FROM OUT HERE IN CO!!! ❤ MEGS XOXOXO!!
It is probably the hardest for you since I only see you every so often and my body is different each time. But I am glad we got to talk that one night together. 🙂 Then the corn,haha. xo