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.
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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.
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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.
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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.)
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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.
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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.)
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My Life with NF2 
We continue to pray for you dear one. I’m so thankful that God promised to be with us ALWAYS!
I have started reading the Psalms at breakfast. I love this to start my day…though by noon I seem to be in need of a reminder. 😉
Our Sunday School class faithfully prays for you each Sunday morning. I will continue to hold you up in prayer. We KNOW that God is with us & guiding………He is with you & I just praise Him for your faithfulness to Him and your witness to others.
Thanks for remembering me in your prayers there! Hope you are doing well too. 🙂
You are in our thoughts and prayers!
Thanks Aunt Tanis! Love and miss you guys!
We love you girl! You are such an inspiration to us all in your attitude and definitely your faith! Is there anything we can do for you or that you need?
Hi Shelia. I think right now just the encouragement I get from reading comments and knowing that I am being prayed for is what I need on the low days. 🙂
Will continue to pray for you and also about your decisions concerning
treatment options. You are amazing, and we love you so much!
Saying all these thank you’s doesn’t seem enough for the gratitude and blessings I feel. 🙂 Think of you often. Hugs to you and Bre.
Praying God gives you the peace in the decision you have to make. Love ya.
Thanks Kim. I think I am also still learning about God’s peace as I seek it in these decisions. 🙂
Mell, I read about your Nf2 in your blog, and now I have a question and thats can this problem be treated completly! ?
I mean is there any treatment to defeat it ? And Mell, u had NF2 when u were a child also?
I think there are many more choices and many new treatment for any problem and specially cancer in America, am I right? At least more than the middle east.
I really pray for you and its one of my wishes to see your post about defeating this NF2 one day, I do pray for u and im sure( I hope so!) god hears me,
Be strong till that day, my heart is with u, Melly:-*love u and wish to see u one day!;****************
Hi Negin,
NF2 does not have a known cure. These treatments can only help prevent tumor growth or temporarily hold the tumors stable, but they do not cure. You can have the tumors taken out by surgery, but I have only had one surgery as we have tried other options to keep the nerves preserved as long as possible.
NF2 is not a cancer, just benign tumors. So treatments for me are unlike cancer where you can be a “cancer survivor” after the tumors are gone from the radiation, chemo and surgeries. NF2 tumors remain even during/after treatments. Treatment options depend on the person and their condition. Doctors do their research and present me with the options and if I decide on the treatment, then we go from there. I was on the chemo Avastin for close to two years, but another chemo for only 4 months as I could not handle the side effects. It gets confusing.
Basically, NF2 is a long-term disease. I will have this my whole life, because I was born with it. I did have it as a child, but I just did not know officially until I was 14.
Thank you for praying, because I know God hears them. I believe that there will be a day when I no longer have NF2–and unless God sees fit to give a miracle here on earth, then I trust in the promises that my body will be healed in heaven. 🙂
Melinda… You are a strong girl. I understand what you feel because I feel it too. NF2 is a long-term disease. Sometimes, I feel so lonely and lost hope… Family and friends are support group. Keep on blogging Mel!!!. It inspired most of us!!!!!
The long-term is probably what hit me hardest the other evening. I am thankful you have a support group. I would not make it very far without mine. I would also have no hope without faith…I pray you find hope in the long days too.
“Courage isn’t having the strength to go on – it is going on when you don’t have strength.” ~Napoleon Bonaparte
I know you’ve already made your decision on the chemo and it’s been a bit that you’ve been taking the oral treatment but I just wanted to comment and say that ‘Whatever your lot or come what may, I am so thankful you can say, “It is well, it is well” in your soul’:) Love and prayers for continued wisdom and abundant peace. XOXO, Megs