Thursday, April 3, 2014

I'm So Confused...

Well it turns out brain tumors aren't as glamorous as they sound.  Oh wait, you didn't think they sounded glamorous in the first place?  Ok.  Brain tumors aren't as easy to deal with as they sound.  Hmm..  You didn't think they sounded easy to begin with?  Gotcha.

I'm a 'glass half full' type of person.  I hear "brain tumor" and I think "wow, that's horrible but we'll get through it!"  I hear "Jon needs Cyber Knife Radiation" and I think, "Ok, I trust that's the best thing for him and it will work out."

I believe the best.
I hope for the best.

However, I'm finding that some things just aren't that easy.  (Duh. I know.)  The day after we were told Jon was being signed up for Cyber Knife Radiation, I got a call from a friend saying her relative was the person who would be doing Jon's actual procedure.  (like, she already had Jon's name etc..)  What are the chances??  Then I get an email from someone who had the same tumor Jon has.  And this person really recommends not doing the Cyber Knife, but to do the Gamma Knife.  THEN I get an email from an old family friend who had the same tumor as Jon and strongly recommends not doing the Cyber Knife or the Gamma Knife.  He did extensive research nationwide and insists the best way to go is to use the method called "Fractionated Stereotactic Radio Surgery."

Each one says they're better than the other. Each one claims to be most successful.  The least invasive.
The most precise.

All this to say, WHAT IN THE HECK DO I DO!!??!?  I say "I" because Jon is just not in a state to do research, gather info, etc...  That's my job as the caretaker and his partner.  So I'm researching and praying and researching and praying.  And then I present info to him... then go back to researching and praying.  Would you join us??  I know.  I'm going to get a million and one opinions now.  (Yes, we've been encouraged by everyone and their mom to try this vitamin and that oil and this supplement and that therapy and.. and.. and... )  Would you join us in the PRAYER part?  Would you pray for CLEAR direction?  The deeper I get into this, the more I realize what weight is in these decisions.  I mean, there is a TUMOR growing at a rapid rate in my husband's brain.  That is just plain crazy.  And Radiation is no pretty walk in the park.  It effects stuff.  Lots of stuff.  For potentially lots of years.  And Jon has lots of years left.  So we don't want to regret a decision, 20 years down the road.  We don't want to kill healthy brain cells.  We don't want to cause more damage.  Yet we must kill the tumor.

Each method is "the best."  Each method promises good things.  Each method also has a reason why the other methods aren't as good.  Shocker.

Bottom line:
Pray for wisdom. Discernment.
We are desperate.


  1. Deanna and Jon, I am praying everyday for your doctors and you to make the right decision for Jon's surgery! It isn't easy I know. Radiation now can be pinpointed to get to just the right spot without too much damage. I don'tknow about the gamma or cyber knife surgery. I am praying that you will both have the stamina to hold up through all of this..God Bless you..and your family..Lillian

  2. Deanna, you are a rock and so is your sweet Jon. Our God is bigger than all of this, and no matter what therapy you choose, God is in control. Our struggle is truly not against what is seen, but rather in what is unseen. And God has the infinite power and authority to take whatever therapy you select and make perfection out of it for you two. You're doing a great thing in researching all that you can. At the same time, keep it in God's perspective and try not to get analysis paralysis. This is not your burden to bear - this belongs to our Lord. He has Jon in his grip and that's what's important. No matter what road lies ahead, God has blessing interwoven all throughout it. Don't forget to ask for and even CLAIM those blessings - He is a God of healing, abundance and almighty power. This is in His care. Love to you and Jon - if there is anything tangible I can do besides pray (which I am doing), please let me know. It would be a pleasure to help.

  3. I so agree with Kathy Schager. Please know that the Lord brings you and Jon to mind several times during the day which is my reminder to lift you and your family in prayer. After going through breast cancer three years ago I can sympathize with the decision making process but as Kathy said, the battle is the Lord's. I found peace in remembering that my life was in His hands...not the surgeon, oncologist or radiologist. My heart aches for you both and all that you are dealing with. Satan is the author of confusion but God knows the plans He has for you. Praying for peace as you research and strength in God's decision. Sending prayers and love to you both.

  4. Deanna, I am my husband's caregiver. I know the challenges. I have added "peace" to your prayer request. I am praying for wisdom, discernment and peace for you. Nahum 1:7

  5. The only non-medicinal or non-surgical procedures I advise for you is a nice long back massage at a kick butt day spa. Deanna, you are doing amazing!

  6. It isn't often that I can say this but "I've been there." Eight years ago my husband and I walked through the shock, denial and sadness of his brain tumor. I'll admit I spent most of the time pretending that everything was going to be ok. I sat stunned, as the first neurosurgeon told us to "start making funeral plans because he had 3 months to live" the next said he needed emergency surgery but that the odds it being successful (ie. having surviving and not being paralyzed or worse) were something like less than 25% and then the third confirmed he needed surgery immediately. My husband's tumor is right smack dab in the middle of his brain, nearly touching his ocular nerves. No quick and easy fix and most of the options that I had gotten so excited about, like gamma knife weren't a good fit for him. Then there was my sheer terror when I realized that surgeons often suggest the procedure in which they are experts, even if that may not be the best fit for the patient. I tried to learn everything I could about brain surgery from the internet, my potential for failure was huge and the stakes could never be higher. I know your desperation well and I promise you the Lord will never leave you, nor forsake you.

    By the grace of God while viewing his pre-surgery MRI the doctor decided to hold off for a week and watch it a little longer. Week after week of praying, watching and waiting bought us precious time. To this day the doctors don't know what happened. They've stumbled, they've admitted maybe it has been this way since birth, maybe it stopped growing...they can't explain it. The only thing they can seem to agree on is that maybe they were wrong. Eight years latter and without surgery my husband is doing great, healthy and strong.

    Sometimes God brings healing through prayer, sometimes with modern medicine and sometimes in spite of our desperate prayers, he has other plans to call us home. But I just want you to know, that you are not alone. God is with you. I am praying for you, your husband and those you love.

    "Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." Romans 5:3-5

    Praying for you,
    Victoria Conklin

  7. Praying constantly for all of you to REST in His goodness with thanksgiving. That your roots would grow deeper as you TRUST in His love for you, Jon and your babies. That His PEACE surround you and comfort your hearts and minds. That you would know you are COVERED in prayer by so many to make the right decision!! <3

  8. My best advice is to seek a second opinion from the best medical facility you can find. For us, with Cassidy's heart, that would be CHOP or Boston. Our friend who needed a heart transplant moved from Denver to Los Angeles in order to get a heart after waiting years in Denver. Have records sent to the best of the best. Get a second or third opinion, and see what treatment they recommend. Then pray for peace about the decision. We will pray with you. Let someone who can review Jon's specific records help you make that decision.

  9. Talk to the Holy Spirit. Tell Him how confusing this is. He knows best - ask Him to guide and counsel you. Then listen - enter God's rest. Nothing is impossible for God.

  10. Having gone through cancer myself (a different type) 10 years ago, I remember all of the conflicting advice and information overload. I know your dad through Skyline and I have been praying for y'all since I first heard of your hubby's tumor, and I'll continue to pray, and will ask God to make it very clear. Prayer is really the best thing we can all be doing for you. Lastly, one thing I took away from my cancer experience is that everyone's cancer situation can be different, and what worked for one may not work for all. I tried to make informed decisions about my treatment choices (I was going through a divorce at the same time so I didn't have a partner to consult either), and then ultimately, I trusted my doctor and God to know what the best course of treatment was for me. Peace to you, friend.

  11. By the way, my name is actually Melanie Marshall. The blog insisted on using my HS Reunion Gmail account which has a generic name.

  12. A book I would like to recommend: When God and Cancer Meet Author: Lynn Eib (a cancer survivor herself and now councils others)

  13. My brother has had 49 brain surgeries, but not for a brain tumor. What we learned is that the very best thing to do is make sure you have the best doctors and the best opinions. Sounds really simple, but it isn't. Through 40 years of brain surgeries we have found 2 teams of doctors who are better than the best the #1 team is the Dept. of Neurosurgery at UCLA led by Dr. Bergschneider (they are actually rated by almost any medical review board as #1) and the #2 would have to be Dr. Walter Johnson at Loma Linda whose specialty is Radiating Brain Tumors. I'd call and schedule a phone consult with one or both. You will rest easier that way and know that whatever wisdom you gain, its the wisdom God wants you to have to be better prepared to make the right decision.