Monday, April 28, 2008

A false hope - surgery - Miracle Monday April 28, 2008



Last time I wrote a Miracle Monday post historically capturing our journey with this brain tumor, we had made a decision to attempt an experimental surgery in Sacramento with a surgeon named Dr. Michael Edwards. Dr. Edwards came very highly recommended from Brian’s radiation oncologist in Denver. With the type of Brian’s tumor, Grade III Anaplastic Astrocytoma, the best chances for longer-term survival were with radiation and chemotherapy following a debulking surgery. The more they could get out, the less was remaining to treat with these other conventional regimens and the more effective they were. Any surgery, we knew, would increase Brian’s odds tremendously, and we were very willing to oblige after Dr. Edwards explained the process.

Dr. Edwards worked in conjunction with a neurologist for this procedure. The surgery process was two-fold. The first step of the surgery was to actually remove part of the skull near where they hoped to resect, but rather than a resection, they would place a group of electrodes attached to a small film ON TOP OF BRIAN’S BRAIN, leave the cords attached to electrodes accessible for the next step, and close Brian back up. For the next two days, the electrodes were plugged into a receiving end in a special monitoring ward in this hospital where a technician constantly watched the monitors of all the patients for possible abnormal brain activity - seizures, etc. The neurologist performed the next step. He would plug his stimulating machine-like contraption into the accessible wires and perform a series of neurological tests right there in Brian’s room. Yes, right out of Science-fiction, ladies and gentlemen, Brian had brain surgery attaching some electrodes to his brain and came out with wires protruding from the gauze turban he now wore while a neurologist turned some dials and flipped some switches giving a small signal to that area of the brain to see how Brian reacted. It was TRIPPY!!! He would ask Brian to read a couple paragraphs from a magazine and then flip the switch to the different electrodes. Sometimes nothing unusual happened and sometimes Brian couldn’t speak or would slur greatly. The neurologist would ask simple commands while stimulating the electrodes and determine if Brian could follow the directions. Sometimes Brian did, sometimes he had no recollection of the question. What the neurologist was doing was creating a map of Brian’s brain, determining which functions like speech, memory, and comprehension were located near those electrodes. You see the issue with brain surgery is this – the tumor is not healthy. It is not functioning brain tissue providing any merit to Brian’s basic functions. The tissue SURROUNDING it MAY BE. To cut through that tissue would mean possibly severing the neurological path making certain functions possible – like speaking, remembering, comprehending, moving, etc. At this point, with the pathology and before any other treatments, that was not a risk worth taking for then 24-year-old Brian. If they could find a section of brain that did not have important functions through which they could enter to remove the tumor, then the resection surgery would have less risk. Unfortunately, this testing was proving that Brian did indeed have MANY vital functions surrounding this tumor. After 2 days of recovery from the first portion of the surgery, and 1 day of stimulation, we were regretfully informed that they could not do a resection, but would simply remove the electrode grid, and close Brian back up. We were devastated, defeated and despondent.

This hospital stay was as dark a time as our first week of diagnosis. It was perhaps darker because we were in California – Brian, me, his parents, and his brothers - with no support system. It was 1997 before cell phones were as prevalent and nationwide affordable as they are today. In addition, the surgeries and stimulation of the brain caused Brian’s brain to swell to new proportions. Up until this point, the only symptom Brian had of this tumor was the sensory seizure he had experienced the first night of diagnosis. With this new swelling came headaches, slurred speech, occasional lip twitching (another mild seizure) and the aforementioned sensory seizures. They were harder to control and harder to predict. The doctors were unsure if he would completely regain his functions. Brian was in an incredible amount of discomfort and it was agonizing to witness – for all of us. We also knew that Brian had undergone all of this, yet we were right back where we started – only we had lost a few weeks of treatment time. In fact, the swelling caused even a LARGER area to now treat with radiation upon return to Denver.

We had placed an unrealistic amount of hope in this one doctor and this one procedure. Anytime we put too much of our hope in things of the world and in imperfect human beings, we are bound to be disappointed at some point in time. It is unavoidable. After 8 days in the hospital, we all left Sacramento. Brian, Jan (his mom) and I flew back to Denver, and the rest of his family flew back to Illinois.

This is a very difficult week to assess for any rays of light and hope, let alone miracles. The week was awful. Brian was worse than when we started. There were new problems to handle with the lip twitching seizures and occasional slurred speech. He was now experiencing headaches and had to take large amounts of steroids to reduce the swelling. It was incredibly unpleasant. However, in life, when you look deep, you can see the hand of God working through your existence. First of all, while cell phones were not prevalent, I was able to use the hospital phone and calling cards to touch base with my family. I spoke with several relatives who would pray with me on the phone and pray over our situation. Our contact circle was increasing. Caterpillar employees Brian had worked with in 3 different cities in Illinois as well as Denver were deeply concerned and praying over our situation. Lockheed Martin employees I had worked with in now 4 different groups and 2 different states were concerned and praying for us. Our parent’s employers, our sibling’s employers, teachers, cousins, aunts, uncles, (and we have A LOT of cousins, aunts and uncles) and employers and friends of theirs were all praying for us. I didn’t even realize the multitude of people that were becoming engrossed in our situation and praying for us. I remember calling cousin Rhonda once around 1 a.m., feeling completely desperate and lost. When she answered, I bawled that I was so sorry to call her at such a time, but reminded her she said call anytime, to which she replied, “It’s okay, I was up waiting for your phone call. God warned me you were going to call, and I have been sitting her praying for you.” She prayed for me and I felt so much peace after the phone call. At one point in time, in a telephone conversation with Rhonda while I was in the waiting room for the surgery, she said, “I am going to pray that God sends you someone in ministry that lays hands on and prays for the sick. The Bible specifically states we are to have the elders lay hands on the sick and pray for their healing.” When I got off the phone, I sat next to a lady in the waiting room – a tall, striking lady whose husband was having routine gall bladder surgery. We began a conversation as she could see the desperation in my face. She stated that her husband was the pastor at an inner city church and they would be happy to pray for us if we wanted. Of course we wanted this. I told her of my recent conversation with Rhonda and she replied, “We do that. When my husband is through with his surgery, we will do this for you.” It was pretty amazing.

While this week was desperate and trying, it was all shaping according to God’s purpose. We didn’t know it. We couldn’t see it. We didn’t really even feel it. However, I find when I look back on all times of my life, regardless of sure signs of God’s presence, all of our circumstances have come together for a greater purpose or for our good. The difference is that we have learned to trust it is there despite the blatancy of it. This was one of the first weeks that trust was truly tested. God uses our most difficult times to dray us closer to Him – make us realize He is all we need and to shape us more into His image. God is always working in the spiritual realm despite our earthly circumstances. We would learn this more in the next few weeks. As far as I was concerned, if I never saw Sacramento again, it would be too soon. That was July 1997.

God had other plans.

For more Miracle Monday posts, visit Beth at A Mom's Life.

KEEP BELIEVING

20 comments:

  1. Angie - God graced you with such a strong and caring spirit. I would have cracked under the pressure long ago but you've managed to find the hope and strength needed to persevere... While also helping others like us come to grips with similar issues. Thank you for all you do.

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  2. I agree with Nicole... it's God's grace which is always sufficient for our needs! PTL! Thank you so much for sharing this with the cyber world. It is a blessing to read how God has blessed you all through this crisis.

    Tänia of www.weirblessed.com/faithprints

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  3. I get goose bumps each time I read your posts about this. I hope this week is a good one.

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  4. It is so great to see how God was working in your life...drawing you all closer to him, helping you to trust in him and depend on him.

    I am continuing to pray for you and Brian as he is undergoing more chemo.

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  5. I love reading about your journey, Angie. It is so sad and scary but also inspirational. I love your positive attitude and strength. I'm so glad your faith helps guide your family and give you hope.
    Your family is always in my prayers.

    Hugs!

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  6. Yep, a true miracle. Reading this was a great reminder that no matter what, God is near.

    I often tell my husband when we are having financial difficulties, that we don't even begin to understand the trial of health issues.

    Blessings, Joanne

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  7. To God be the glory.

    We would never ask to suffer, but we would never know him on a deeper level if we didn't.

    Much love to you.
    Your latte is ready...

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  8. Please know that I think you and brian are very precious, keeping you both in my prayers.

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  9. your family's hope and faith is such a testimony...thanx for sharing it! for everything you all've gone through and are still going through-your hope amazes me!

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  10. Thanks for continuing your story. It is a hard one, but I love to read it. It reminds me to keep the faith.

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  11. Oh my gosh! I'm entering nursing school in the fall and have taken anatomy and physiology which helps me to understand how terrible this type of is. My friend's son had that operation with the grid to help with seizures so I can picture that exactly as well. My son died at the age of 10 months old in 1996 if a disease that caused all kinds of seizures so the picture in my head is quite clear.

    What a miracle your husband has survived 11 years! Such blessings to be thankful for now even though you felt you were in your darkest hour then. Been there. Looking back does show us how the Lord works even if we did not enjoy the method.

    Thanks for telling this oart of your story!!

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  12. Angie, if only you could bottle your strength, courage, and faith.

    I hope you and Brian have a good week.

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  13. Once again I am in awe of your faith and your family and your strength!

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  14. Thank God for Rhonda...that is amazing.

    What a hard week. I can't even imagine having to go back into brain surgery to accomplish nothing. OUCH.

    What strength...

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  15. This is such a victorous story... 11 years, amazing. Have a wonderful week Angie. :-)

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  16. Oh, Angie, Please know that I am offering prayers for Brian and all of you. You have been given great strength, but do remember to rely on others as you have done.
    ((((((((Big Hugs))))))).
    God Bless, EJT

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  17. WOW. Simply WOW.

    Every post you write I read each and every word because (a) you are a seriously talented writer and (b) you radiate inspiration and courage. This post was no exeception.

    Of course you know, you're both in my daily prayers.

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  18. Wow, it's so interesting to read about other people's run ins with cancer. My Dad had a brain tumor at a very young age too. And you're so right. It's hard to understand why things are happening while they're happening, but given some time and perspective they get a little more clear. Thanks for posting this.

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  19. I had a comment I was going to share, but then I read Nicole's comment and it said it perfectly.

    You are an amazing, AMAZING women.

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  20. I hadn't read this when I commented on your stink tree. Now it makes sense why God had that particular tree put in that particular yard. He knew that you were enough of a big picture person to find His grace even in the hardest times. And just look how right you are proving Him.

    xoxoxo

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