Okay, so here it goes.
I met with the Neuro-Oncologist this afternoon. He was very kind and very sympathetic yet awkwardly optimistic. All of my other doctors have been nothing like that. What laura shared regarding this appointment was very accurate, and there isnt much I can add to it. I will skip to the Neurosurgery appointment and try to share as much as I can, but if I miss something I will have to come back and add it later. Right now, I am in information overload, I am going to list things instead of blogging them- that seems easier than trying to carry on a conversation. These are the notes he wrote for me, during the consultation (which was wonderful, I only had to sit and listen- he wrote the important stuff out for me).
-The surgery will last 4 hours. He will not shave my head, he will shave a strip of my hair on the left front side above my eye. I will be in ICU for atleast 24 hours, and then will be in the hospital for another 3-5 depending on recovery.
– The benefits of having surgery:
a- Diagnosis. There will be no brain biopsy, he will go in and take a “snapshot” piece and have it run to the pathology department for diagnosis- once the diagnosis is made he will remove it. The only reason surgery would stop at this point would be because the pathology came back non tumor (infection), but this is very unlikely.
b- Removal of visible tumor via MRI (this will be an intraoperative MRI)
c- Maximize my life expectancy
He said that without surgery or radiation, I was looking at 5-7 years life expectancy. With radiation alone possibly 15. With surgery, my odds of a longer life are greater- but there is no “guarantee”.
He told me to expect to have right side motor paralysis for some time after surgery (could be hours, days, weeks or months)
Permanent disability [5-7%] (stuttering, unable to speak fluently (searcing for words) right hand difficulties-) It should not effect my legs or my neurological status.
Induction of seizures [2-3%]
Major stroke or Death [1-2%]
He said that there really wasnt any other option if I wanted to have quality of life, he said that the tumor is quite large and has been there for atleast 10 years (BIG difference from the other guys who said 2-5) He said that it is slow growing, but WILL come back, there is no cure for this, it is terminal and I will at some point have another tumor either in the same location or some where else in my brain. He said that when it comes back, to hope that it is no where near my motor strip and that it is on the right side of my brain.
He was prepared to do the surgery tomorrow- I wanted to get my family here, and make sure my kids were taken care of first. So we scheduled for next Thursday. I wanted to let you know that your donations have been such a huge blessing to us in this time. I have no idea how we would have arranged flights and hotel rooms for my family and marks family if it weren’t for you (thank you sooo much Jeff and Cathy for your frequent flyer miles!) The burden that your donations have releived is unexplainable. My mother in law will be flying to our home on Sunday evening, and will stay with my older kids. My parents and Emma Grace will be flying here on Tuesday (they are bringing Emma because medically, they are equipped to assess her) We just got their hotel room in the same hotel we are staying at, which is a huge blessing.
How am I? I am a bit overwhelmed, but glad to have a game plan. I am not excited about someone cutting my head open and touching my brain, but I am confident that these doctors are the absolute best and will take very good care of me. I am confident that I have been provided for this far- Christ isn’t going to take his hand off me now!
I wish that I could tell you that I was the pillar of strength after the appointments today, but I was not, and that is okay. I think today everything has come to a head, and the magnitude of the situation is weighing in me. I have cried more today than I have in the last week, but at the same time- some of those tears are tears of relief.
I am not sure why this has happend to our family- I am not sure what God’s plan is in this- But I am confident that He has one. I am not of the mindset that this is yet another horrible awful thing that my family has to endure- I, instead, look at all the blessings that have come from it- and the fact that I have hope.
I am owed nothing, yet i have options. How awesome is that.
I wanted to share with you what happened when we first got to the Gonda Building (where my appointment was). There was a lady playing the piano and another woman singing. Mark and I walked over there (We were early for our appointment) to listen to them sing. As soon as we got there, the lady started singing “Great is thy faithfulness” and I started to weep silently.
He is faithful, always. Even in the midst of this crisis in our little family – He is faithful.
I then went to the gift shop to kill some time and sitting on the counter there was silver jewelry. The necklace had a pendant in it with a tiny little mustard seed. Next to it was a bracelet that had the following verse on it:
“Call on me and I will answer you and tell you of great and unsearchable things of which you do not know” – Jeremiah 33:3
I purchased both and wore them with confidence into my appointments. When I felt weak, I would rub the pendant on the necklace- when I looked down while I cried, I saw the inscription on my bracelet.
He is good, and He has never left me. He never let me go.
Matthew 17:20 “For truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, ‘Move from here to there,’ and it will move; and nothing will be impossible for you.”
He is moving my mountain – He is giving me my miracle through surgery. His ways are not my ways, I would rather it just be gone (and it still can happen, I fully believe that) but I praise him for the options and for the hope.
Today is a good day. Even through the fear and the tears, it is a good day.