My Symphony

The Lord your God is among you, a warrior who saves. 

He will rejoice over you with gladness. He will be quiet

in His love. He will delight in you with singing

~Zephaniah 3:17~

Before I say anything at all about what is going on in my life, I'd like to dedicate this entry to the memory and honor of my friend, Gary Frank Kitchens who joined the hosts of Heaven this past week and whose life we spent celebrating this afternoon. Oh, that we could all be the salt and the light to an ugly, dark and needy world as Gary and his beautiful wife, Sharon, have been! Please keep Sharon and the entire family in your prayers as they draw strength from the God they know, love and serve.

I always say that I am going to update my blog more often and be more proactive in voicing the things God is teaching me through this journey with chronic illness, and then I look, and alas...it has been four whole months since my last entry! I lament over this, but only briefly, because to do so just makes me feel worse--about myself, my situation, my failures. So I will charge onward and try my best to get as much said with as few words as I am able to pen...that is, if that is even within the realm of possibility...ha! After all, I know I can be wordy. To my chagrin, this blog is so unlike the many I see that are short, sweet and to the point. I just can't seem to get there, so please allow me to apologize in advance. I have so much to share about what God is doing in my life that I scarcely know where to begin. Oh, that HE would give me the words to show HIS light, HIS love, HIS glory reflected in me!  

The last four months have been full of victories and difficulties, but as I ask the question...much like Lauren Daigle in her song, 'You Say'..."Am I more than just the sum of every high and every low?", I find through scripture and the Holy Spirit within me that the answer is a resounding YES! I am so much more, because I am a masterpiece of God; my significance lies squarely on what GOD thinks and says of me! Not only that, like a perfect symphony, He orchestrates my every step, places my feet on firm ground, leads me through my dance of faith. All I have to do is follow the Maestro, stand on my Father's feet as we dance together, and allow HIM to direct my path.

I recently attended my high school class reunion, something I determined to do, despite the tremendous physical and emotional strain activities such as this place on me. Not only did I want to go, I felt compelled to go. Oh how I needed the fellowship, camaraderie and reconnection with lifelong friends--some of whom I have not seen in well over twenty or thirty years! One friend in particular walked in, and as we embraced, it was as if we had never lost touch. In fact, upon later comparing our senior class picture with the reunion group picture, I noticed that very little has changed at all. There we are in both pictures together--side by side--with her on my right and I on her left. Though we have both seen our share of pain and heartache, the years melted away and we felt like school girls again.

Little did I know that God would use her in a profound way over the next few weeks, to comfort, prepare, and bring peace to my heart. She is a "hand-written note" kind of a person, and I love that about her, especially in this age when everyone uses technology to communicate, but no one seems to really connect with anyone on a truly personal level. But my friend and I connect, and it was with great joy that I recognized her characteristic handwriting on a note, then again when a package arrived a few days later. Within that package came a source of comfort and peace that I didn't even know I needed at the time--but God knew. I hastily opened the enclosed CD (music by Hillary Scott and the Scott Family) and began to play the music. As I listened, God spoke to my heart through two songs in particular. The first is called 'Still', and assurance came that God is working continuously by parting waters to make a way for me, moving mountains that I can't see and answering my prayer before I even speak! All He needs for me to be...is...still. The second song I knew carried a message for me was 'Thy Will be Done', which says that no matter what happens in my life, whether storms or trials or whatever--my prayer should always be like that of a child, pure and centered on those four words: "Thy Will be Done"! I know God sees, He hears, and He answers. All I have to do is rest, knowing that He is GOD. And I. am. NOT. 

So with my spirit stirred, but not quite knowing why, I reflected on a "chance" encounter I had earlier in the month. We attended a Myasthenia Gravis Support Group meeting in Fort Worth a couple of weeks earlier, and I "happened" to be seated across the table from a lovely woman who had major surgery called a thymectomy in an endeavor to put her Myasthenia Gravis in remission. It was difficult to hear her in the restaurant meeting room...where people were chatting, plates and silverware clinking...and we never really had the opportunity to finish our conversation. In fact, we failed to even exchange phone numbers. I did, however, get one name--and it was a nickname. Now, as I thought about the past few weeks, I wondered--what's God up to? Why is He making it crystal clear that He's preparing me for something with His provision of love, encouragement, support and--of course-- the "thing", other than scripture, that speaks the most to me: music?

The answer came just a few days later as I visited my doctor in Houston. She spent an hour and a half with me, going over test results, making a game plan, even discussing thymectomy. During our visit, the words "Paraneoplastic Myasthenia Gravis" became front and center, and while I won't bore you with technicalities, it simply means that there is a tumor somewhere--perhaps small and hidden, possibly even occult--that is causing the body to fight against it. But in the process of fighting that tumor, an autoimmune response is launched, which causes or worsens diseases such as Myasthenia Gravis and others. So the tumor must be located and treated, all the while treating the autoimmune disease itself. I was shell-shocked. Cancer? Me? What more, Lord? As I tried to wrap my brain around it all, the words to the music my friend sent me kept playing over and over in my mind..."You're parting waters, making a way for me; You're moving mountains that I don't even see! You've answered my prayer before I even speak. All You need for me to be...is...still." I could therefore sing along as I hummed the other tune and my heart cried, "I know You see me, I know You hear me, Lord. Your plans are for me, goodness You have in store! So Thy will be done, Thy will be done, Thy will be done!" Suddenly, for the first time in a very long time, I felt hope that my disease process (which has been aggressive and progressive) would slow down and that I will actually be able to do more than just look at a dance floor...I may even be able to dance again!

Remember the lady from whom I sat across during the MG Support Group meeting? Since my doctor and I had discussed thymectomy and this dear lady lives in my area and would be able to answer questions and even refer me to her surgeon, I looked for her name within an email I received by the leader of our support group. I was worried that I wouldn't be able to find her real name, but I picked one from the group and sent an email. To my delight, I chose the correct address, we exchanged phone numbers, and I gathered valuable information from her via telephone. 

I called her thoracic surgeon, who operates out of UT Southwestern in Dallas, got an appointment right away, and went to see him, naively expecting to go into the hospital and have surgery ASAP. Well, to my great disappointment, things don't quite work that way. The surgeon told me that after reviewing all my records, consulting with my neurologist and assessing my condition, he would NOT be doing surgery. Though we need to get to the root of where and what type the tumor is, he doesn't believe it lies in the thymus gland because it didn't show up on CT scan. He also voiced concern that I am so sick right now that surgery would be too dangerous and that I am at high risk of not surviving at all. If I did, there's no guarantee that a thymectomy would even help. I am sure I looked deflated (I sure felt deflated) because he looked me right in the eye, told me in no uncertain terms that "God has a plan for you!", and then spent the next two hours with me, doing research for me, trying to connect me with specialists all over the country, assuring me that he wanted to step outside his scope of expertise to help me get better. He encouraged me by telling me that God has allowed this to happen because I am tenacious and have enough fortitude to keep pressing on, that I am smart enough to use the information we gather to educate and advocate, helping others in the same situation I am in. He even encouraged me to blog about my experiences!

Since I have what he calls a "constellation" of autoimmune conditions as well as a genetic connective tissue disease (the latter probably contributing to the former), he wants me to work with him to continue to seek out answers, as my condition is rare. There are no easy answers, no treatments outside what we're currently doing until we find the cancer location, so for now, it is going to be a road paved with searching, researching, networking with this new amazing doctor, and praying for guidance. I have no doubt that, just like a symphony, God orchestrated every move toward this direction which ultimately led straight to this doctor, who believes that I can find answers that will help me, my children and others as long as I continue to persevere and not give up.

In the meantime, I have an appointment next week with a paraneoplastic specialist that the surgeon referred me to, and I trust God with it all. After all, God's word is full of promises, and He is faithful to keep them all.

God bless you, I love you...

~"But I trust in You, Lord; I say, 'You are my God'. My times are in Your hands..." 

(Psalm 21:14-15a)~