Sunday, June 9, 2013

The Good News and the "Not So Good" News

Relieved...somewhat. And so very THANKFUL.

That is how I would describe our feelings after meeting with my surgeons last week. Not only did we see our neurosurgeon, Dr. Mickey, on Wednesday, but the next day I also saw my neurotologist, Dr. Kutz.We are so thankful for these men...not only for their expertise in their fields, their straightforwardness, their ability to be reached (and how they quickly respond!), but are thankful mostly for their sincere care and kind bedside manner. They have been an amazing team and it is obvious that they are truly rejoicing with us because of the amazing outcome of my surgery. ALL praise be to God!

The Good News

My acoustic neuroma is gone. Like totally G-O-N-E. Not there anymore. Not even a remnant! Thank you Lord! That means, Lord willing, that it can't regrow and that I won't need radiation. The neurological tests of my facial nerve function went great. Dr. Mickey used the word "spectacular".

Regarding the meningioma, the "bonus" tumor they found back in December, is still there. :( But there is good news surrounding it as well. It is all doctor speak to me, but apparently the "no...blah, blah, blah" and "no, blah, blah, blah" from the report below is good news! ;)

The meningioma abuts the falx and the superior sagittal sinus,
however the superior sagittal sinus appears to be patent. No abnormal FLAIR
signal is seen in the subjacent brain parenchyma. The diffusion weighted
images demonstrate no evidence of acute infarct. There is no hydrocephalus,
acute hemorrhage, significant mass effect, midline shift, or extra axial
fluid collection. Midline structures are within normal limits. The paranasal
sinuses are clear.

So, although I really wish I didn't have this remaining tumor to deal with, I really am thankful that there isn't any evidence that it needs to be dealt with urgently.

The "Not So Good" News

The other part of the report stated:

Again demonstrated is a left posterior parietal parasagittal meningioma which
measures 23.4 mm transverse by 23.5 mm AP by 23.4 mm craniocaudal, previously
measuring approximately 22.0 mm transverse by 21.0 mm AP by 21.9 mm
When I read that, my heart sank. All I could see was GROWTH.

Before Dr. Mickey came in, we met with one of his nurse practitioners. I had interacted with him many times over the phone, but this was my first time to meet him. He went over my scans in detail with us, redoing measurements and commenting on the images that sat side by side on the screen---December vs. May. He said he agreed with the radiologist, that it was definitely growing and it would need to be dealt with. Our hearts were heavy because I think we just hoped that it would have "arrested" and we could go on with normal life. We mentioned to him that we have had quite the year with our insurance, so having met the maximum out of pocket financially ($$,$$$-only through the Lord's amazing provision!), maybe the meningioma should be dealt with in 2013. He concurred...and the lump in our throats grew.

I liked the nurse practitioner a lot, but as our meeting dragged on, I began to wonder if we were actually ever going to get to see Dr. Mickey! When alas, he stated, "Dr. Mickey sees a lot of these and will know what to do, let me bring him in." Um, yes. Thank you. ;)

Dr. Mickey came in and after doing a couple of tests and telling me how great I looked, said, "I am not at all convinced that this thing is growing!" What!?! A sigh of relief.

He had me come sit next to him to review the scans. He got out his model of the skull and asked us to imagine that I had a peanut in my brain. Depending on the angle that the MRI sliced it at, it could show very different measurements. The radiologists know that, and steps are taken to minimize error, but the chance is still there. Most likely it is growing, but slowly. Apparently the way the MRI was ordered, it focused more on the acoustic neuroma than the meningioma. So, the "money shot", as Dr. Mickey called it, wasn't taken.

He too said that it has to be treated...possibly with radiation, though he doesn't really recommend that...most likely surgically removed. Because of its location, he will not be able to take all of it. It is too close to a major blood vessel and the risk isn't worth it. Any surgery is risky, but this one is supposedly less serious and less traumatic to my body. Though I didn't think to ask him what my recovery time would be like. Radiation would most likely be necessary later if it starts to regrow. :(

So he was basically on his way out after telling us to repeat the MRI in 6 months, when the NP mentioned our insurance fees being met for the year and the possibility of operating sooner than later. It would be nice to not have to fork out another $$,$$$ if it indeed needs to come out in the near future. Dr. Mickey thought that was good reasoning and decided to have us do the MRI in early November so we could get a better timeline. The NP actually reserved a day for surgery in December because their schedules get so busy with everyone trying to get things done at the end of the year when deductibles are met.

It would be great if we could put it out of mind until November. Instead though we will be doing research and praying and planning and thinking and praying some more.

Please pray with us as we consider these things:
  • Meeting with our radiation oncologist, Dr. Nedzi, again to get more information.
  • The timing of everything: emotionally, physically, financially, etc.
  • Our desire to use our same surgeon, whose career can I say this...not exactly at its beginning stage. ;)
  • The unknowns of what "ObamaCare" will look like after this year.
Our God is so big, so capable, so caring, loving and kind. I am so thankful that we have His ear...that he listens as we cry out to him for wisdom and discernment. May we honor him as we again enter a decision making process.
Ephesians 3:20-21
20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.
Thank you for journeying along with us. Your encouragement, prayers, and just plain interest continue to minister to us in an incredible way! We could not fathom walking through this without Christ and his body.

Wednesday, June 5, 2013

Off to the Neurosurgeon I Go!

Well, it's here! June 5th.  The date that has long marked my calendar.

Today Jerry will join me as I head to Dr. Mickey's office so he can give us the official results of my post surgical MRI.

That MRI was an experience! It was the first one I have had in a hospital setting and it was interesting. During my December MRI, I was able to just keep my normal clothes on (all they needed was my head, right!?!), they put the contrast dye in with a quick in and out butterfly needle, and it only lasted 30 minutes. AND I remembered to take a Xanax (or two!) to combat my claustrophobia and other anxieties surrounding the situation.

The one I had at UTSW 3 weeks ago required me to don the lovely hospital gown, matching non-slip booties (they are serious about the fall risk!), and get a full on IV in my arm. So there I sat, feeling vulnerable as the nurse prepped the IV (I HATE needles, but who doesn't?!?) and I REALLY wished I had remembered to take a Xanax. She could tell I was panicking and asked if it was about the needle or the tube enclosure and I said, "Both!"  I asked if they could give me anything, but sadly that answer was no. I even questioned her about why an IV was necessary.  Something about having a port of entry in case I had a which I promptly replied that I had just had this done in December with no reaction at all! No luck.

I prayed and prayed and was so thankful it was a good stick and I was on my way to the tube. The tech got me loaded and asked for my radio preference.  I said Christian and he proceeding to pipe in the cheesiest 1970s type music I had ever heard.  I actually asked him to turn it off, but he forgot! He asked if I wanted to test the panic button and I actually did. It worked!

He said it would be 35 minutes of scans, but it ended up being closer to an hour in the machine because of long pauses between the segments. However, even with the wacky music, loud banging, IV and the not fun hospital gown, I was startled when they slid me out to put the dye in.  That is the power of prayer, folks! Not only was I not experiencing any anxiety or claustrophobia issues, but I had fallen asleep!

Thank you to those of you who had prayed.  Your prayers were very evident.

Unlike in December, I didn't get any calls with results.  I have learned that this is a good thing! When a doctor calls you personally and sooner than expected after a test, the news isn't good. ;)  I did get a notification a few days later, though, letting me know the results had been posted to my electronic chart.  I debated about even looking at them, but curiosity got the best of me. Due to my limited "doctor speak" knowledge, I was left with more questions than answers, but overall---according to a doctor friend and my nurse relatives, it was a good report.

It doesn't take any medical knowledge though to know that the meningioma has grown. The measurements showed it has increased in size by 1.5 mm in 3 directions. It just did what it should have done I guess.  It would have been a miracle for it to not have grown.  That just seems to be a lot of growth in a short amount of time. Knowing that caused a bit of anxiety as I really would prefer to not have anything growing in my brain! And I even felt sorry for myself for a short time too.  Asking questions like--Isn't one brain tumor enough? Isn't one craniotomy plenty (or craniectomy--that is technically what I had)? Just being honest! But the Lord, in His kindness, has once again restored peace. 

Isaiah 26:3-4
3 He will keep in perfect peace
    those whose minds are steadfast,
    because they trust in you.
Trust in the Lord forever,
    for the Lord, the Lord himself, is the Rock eternal.
When experiencing this anxiety and desire to wish the remaining tumor away, my mom wisely told me to relax and not worry, until someone in authority tells me otherwise. Love her!

We see that "authority" today. I can already envision the appointment. Dr. Mickey will come in, make eye contact and ask a few questions...maybe even give me a portion of a neurological exam. Then his back will be turned to me as he looks at different views of my MRI on the screen and makes measurement after measurement after measurement...kind of like the 20 week sonogram when you are pregnant.  Then he will turn around. That is when in a caring, yet monotone and direct, voice he will give us some news.

I just pray that whatever the news is, that we will be able to receive it with peace and maintain our composure. During my initial appointment with him I was a mess and he commented that his nurses take off points for making a patient cry! ;) Hopefully no points taken off today!

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