Monday, October 27, 2008

What now?

First things first. Brian had a doctor's appointment today with his oncologist. This was a planned appointment from weeks ago assuming we were on the same Avastin and CPT-11 schedule. He was disappointed and surprised the surgeon had not called us to discuss surgery. He thought the surgery was an option seriously worth discussing with the surgeon. Brian explained that he did not want to have a surgery that would leave him with ANY further deficits and he said based on his discussion with the surgeon, the surgeon did not feel there would be. He felt like he had a clean shot to the area of enhancement.


The second point was discussion of what the area of enhancement is exactly. As you know from my many prior posts, with the brain there is NO WAY of knowing for sure, barring taking a sample surgically, exactly what the enhancement consists of. The board as a group collectively hypothesized last week that the area was growing tumor based on a few factors. The PetScan on Tuesday showed little activity leading to a conclusion that it would NOT be tumor activity. This is very difficult to decipher, I realize, as there are conflicting reports. The end result is that no one test is more definitive or conclusive over another necessarily. False negative PetScans of the brain occur often. Nothing is for sure.


So, we are right back to where we were last week. Waiting to hear from the surgeon. We have an appointment on Thursday if he does not call us prior to that. I am interested to hear whether or not HE thinks it is tumor or radiation effect.


Radiation effect simply does not make sense to me because of how quickly the enhancement occurred, because of how long it has been since surgery (18 months) and because of how large the area is. At this point in time, the enhancement is larger than the area that was radiated. The area that was radiated was small and concise. I told Brian I feel terrible, as though I am resisting what could be good news. When did that happen? He said he agreed. He didn't know how to take this news and was taking it in stride as well. Part of this is because of the problems Brian has had in the last two weeks which coincide with the timing of the growing enhancement.


From two weeks ago, Brian suffers from sporadic headaches which have lessened in the last three days. Also, Brian has been struggling with some thought processing - specifically numbers. His brain knows what he should do, but getting his body to execute it is another story - dialing a phone, basic computer functions, finding a radio station, etc. - it just isn't coming together. Also, his right side is weaker. His speech has deteriorated a bit, but not dramatically. Some moments are worse than others.


All in all, though, Brian continues to do pretty darn good relatively speaking. He refuses to take the elevator or let me get things for him if he is capable. He is in great spirits and I find him smiling often. Just gazing off and smiling. He tells me he is just happy. And yes, this happy is in the middle of assuming he is near death. We openly talk about it now. We openly discuss taking care of issues and ensuring we spend this time doing what he wants to do - what is best for our kids and our families, building memories, making the moment insanely special, and knocking off whatever he wants from his "bucket list." He says he is doing what he would want to do. He is spending time with me, his boys and our families. That is what he wants. And that is what makes him happy. His dignity and character right now speak worlds to the man Brian has always been.


We had a great weekend with Brian's family. We spent time together, enjoying each other and being with each other. It was nice. The first couple days, Brian was plagued with headaches. The last couple of days, you would barely know he was sicker. He spent many hours with his brothers. The boys had sleepovers with Mom and Dad at Grandma and Grandpa's and it was great. They got to see Ziggy the dog which always completes their weekend. It was incredibly enjoyable in between Brian's fatigue, headaches, and issues. We are learning to work around those and be flexible.


Well, I guess, the summary is keep us in your prayers for guidance. Brian and I both thought we were going into this appointment today to discuss that we did NOT want surgery, what chemo we would do next, IF ANY, and what to expect from here. Now, we are ready to discuss another surgery and neither of us know how we feel about it. We could use some wisdom.


KEEP BELIEVING


78 comments:

  1. Praise God, for the blessed weekend you all had together. It is great to laugh,smile,to have those now moments, where time seems to stand still. Taking in the Love,totally being immersed in it. For it brings, Joy, strength of the Lord within.
    Praise God, for the report, you got from the Dr. this morning, there is a light. Not knowing what to do about it. Angie Brian, give the "we don't know" to God. Keep your focus on the things Brian wants to do. It is great he is taking authority going forth in spending the precious time with the ones he loves so much.
    It isn't Thursday yet, so keep laughing, it is the best medicine you can give to each other.
    Asking the Holy Spirit to give you the holy laughter, that makes you laugh from the inside out. A Joy unspeakable flowing out of the O'Neill clan.
    So some wisdom you asked for, look deep into your hearts and go do the thing that you always wanted to do and haven't gotten around to yet.
    Go do it before Thursday. Word of wisdom KEEP BELIEVING. Speak out what you are believing for,
    KEEP BELIEVING THE CANCER HAS DEPARTED, IS GONE
    FOR GOOD. RESTORATION HAS TAKEN PLACE.
    IN JESUS NAME AMEN.
    Love you Marjo

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  2. Still praying and believing! Thank you for the update, Angie!

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  3. Talk with God. He will help you and Brian know what to do. All our prayers.
    Gretchen

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  4. Angie,

    If you need anything I am just across the street!! We keep praying each and every day!

    Mike and girls

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  5. Oh Angie. You are always in my prayers. Keep us posted as often as you can as I am always thinking about you and your beautiful family.

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  6. I am saying a prayer for you right now. xo

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  7. I am continuing to pray. I woke up at 4:00 this morning with you and your family on my heart and prayed for you all.

    Brian sounds like a truly amazing man (and you sound like an amazing woman!).

    Will be praying for healing and wisdom.

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  8. Angie, you are are so loved by us all and it hurts to know you are going through this right now. Brian and your entire family are never far from our thoughts and always in our prayers.

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  9. Father, please give Brian and Angie the wisdom to do exactly what you would have them do. And follow that wisdom with your peace, carrying them beyond the comprehension of mere mortals.

    In your Son's name we pray,
    Amen

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  10. I will put you and your family in my prayers. Good luck!!

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  11. Continued prayers for Brian and all of you...

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  12. (BIG HUG)

    I'm thinking of you. You're in my prayers, and you are loved.

    Phil 4:7

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  13. Sending hugs and good, positive thoughts your way to you and your family in such a difficult time. I'll be thinking of you all.

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  14. Prayers for your husband, for you and for your entire family. God is with you.

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  15. I pray God will give you and your husband wisdom and comfort during this difficult time.

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  16. You and your family are in my prayers.

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  17. I'm still praying and I'll keep on praying.

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  18. You and your husband are extraordinary people. I am not an overly religious person but I cannot think of a better example of God's grace. Your beautiful family is in my thoughts and prayers.

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  19. You are all in my thoughts and prayers!!
    ~K

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  20. I will pray that you know the wisdom you seek, but I think it is inside of you already.

    Hugs.

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  21. No wisdom to give, but support out the yin-yang. :)

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  22. Hugs and prayers...

    I'm so glad you're spending time with your family and that it went so well. Thanks for taking the time to post an update.

    Keep believing.

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  23. Lots of prayers and positive thoughts coming your way!! (((hugs)))

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  24. Another prayer from my way . . .

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  25. Thinking of you and sending good thoughts your way

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  26. Praying for your sweet family.

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  27. Angie, your post is inspired! Thank you for updating us. The photo is amazing. Brian glows.

    And please don't be hard on yourself for questioning all of it. You are only human.

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  28. I'm so glad you all had such a good weekend and I am, of course, still praying for you guys. Keep strong and continue to rely on God - he will carry this burden and he will give you strength. I can't even imagine how hard this all is, but I am continuously inspired by you and Brian. I only wish you the best and will pray that God continues to stay with you and shines his light on you. Take care and I'll check back soon - Kellan

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  29. Always in our thoughts and prayers Angie. Praying that God makes His plan for you both clear.

    Hugs, Kristen

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  30. If I had any wisdom to spare, you know I'd give it all to you guys. All I have is faith. Faith that you will all weather the storm, whatever that may be and come out smiling. My thoughts are with you guys.

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  31. I will say a prayer for you and your family. I believe that prayers are heard and answered, so I will be sure to include one for you.

    Stay strong. God will help you through - you're never alone!

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  32. prayers to your family (((hugs))))

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  33. You are and your husband are amazingly strong.

    I found you via Classy Chaos and wanted to lend my support and prayers :)

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  34. Prayers for you and your family.

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  35. Hi Angie-

    I am a direct send from Classy Chaos...that being said HOLY SMOKES, Lady! You and your family are on our families permanent prayer list. After digging through your stuff here I can't believe all the wonderful out pouring on your part and this community's. I am thinking the best for you all. I wish I had some great idea or experience to share. I just hope all turns out the way you need it. Hang in there!!!

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  36. Also coming from Classy Chaos. Lots and lots of prayers for you right now. Cancer sucks and I am so sorry that you have to fight this horrible disease. So not far. Hang in there and remember that people you don't even know are praying for you daily. I promise to.

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  37. Classy Choas let me know about your family. We're praying for you!

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  38. Here via OHMommy. I will keep your family in my prayers. I pray that the surgeon and doctors will figure out a plan of attack, but that it isn't necessary because God performs miracles all the time.

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  39. I am praying for healing, wisdom, strength and peace for your family.

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  40. I am here from OHMommy's blog. I don't have any words of wisdom, but you and your beautiful family will be in my prayers.

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  41. Heavenly Father, please pray for Brian who is suffering from brain cancer. His prognosis does not look too good and I pray that you give him the strength to keep on fighting. Although I do not know him personally, I know that he wants to be around to be the husband and the father that he wants to be. His wife Angie and his two boys need him to around a little while longer to be together as a family and watch their children grow. It is not his time yet Lord, he still has unfinished business here with us. Please heal him and provide the miracle that they so desperately hope for. Amen.

    Angie- I will keep on praying for all of you everyday, I promise.

    Belinda Naylor
    belinda_cano74@yahoo.com

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  42. Keeping your husband and your beautiful family in my thoughts Angie.

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  43. You are in my prayers. Your family sounds so strong and loving. What a blessing to have found your blog through a friend. God Bless you all.

    jo

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  44. You are both so inspiring.
    Continued prayers for your husband, you and your family.

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  45. I'll be praying for you.
    Tiffany

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  46. first time here. Praying and adding you to my rss so I can keep up. Do you read http://especiallyheather.com ?

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  47. Angie, I do not know you but I am a believer in Christ and I know He can heal. I will join with you. You are in my thoughts and prayers. I am also a mom with two young girls and my heart goes to you, your husband, your children and your family. Know there are people all around that are believing with you. Keep believing and never give up.

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  48. That picture is priceless. Is it my imagination, or can I smell the steaks grilling?

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  49. I don't know you but you are a sister in Christ so I am going to pray and pray for peace, health and healing.

    I wish there was more that I could do. I would do anything to help.

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  50. No wisdom from me, but you two seem to be making your own. I say follow your instincts.

    Holding you in my heart.

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  51. {{Big Hugs}} I have no fantstic words for you -- but I like what Jenn @ Juggling Life said " Follow your instincts" doing that with a lot of prayer and I am sure you guys will make the right decision.
    You are in my prayers!!

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  52. HUGS i came from kellans site and I am just here to off my thought and prayers to you guys. I am a 17 year old girl that has cancer too :(

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  53. WOW! This is my first trip to your blog- I will be back for progress reports. I will pray for your family!

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  54. My eyes are filled with tears for you. I pray that God continues to give you the strength and grace you exude. Prayers going to you!

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  55. Thinking and praying for you and your family! XOXO

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  56. Hey Angie, I have been praying for your family and your husband as I learned from you through Kristen at Loving our Simple Life and OhMommy at Classy Chaos. I am praying for a radical and miraculous recovery! I am asking that the Great Physician would touch your husband with His healing hand. I am also asking that He would sustain your family and you as the wife and momma!

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  57. Finding your blog for the first time. I will keep your family in my prayers. I am awed at wonderfully you talk about your husband. He sounds like an amazing man. That picture of the men in their matching shirts is fantastic.

    Don't ever stop believing. Miracles do happen. My Dad lived in a hospital in Boston for 98 days waiting to get a new heart or to die. Just when things looked bleakest, the heart came.

    5 years later, he's doing great.

    Hallie

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  58. Darling, I am sending you all the love and strength I can through this computer. May today be bright and beautiful for your family. May Brian's headaches cease and his time be filled with joy instead of pain...

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  59. OHMommy sent me. As she has, apparently, sent so many others. If prayers and positive wishes have any effect, please know that I am adding mine to all of the others. I wish there was more I could do. I Truly do.

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  60. I will pray for you and your family.

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  61. You're in my prayers too and may He stand beside you as you go through with these trials.

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  62. Came over from On the Upside. You will all be in our prayers and we will ask our friends and family to keep you in theirs too. Hoping you receive some good news soon.

    -Kate

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  63. I pray for your husband and family as well.

    Alicia

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  64. My prayers are with you and your family

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  65. I can't stop thinking of you . . . and praying for you and your family.

    I can't imagine. So I won't. Instead, I'm going to think nothing but positive thoughts. But know, even though we may only be virtual buddies, I'm here. And that is as real as it gets.

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  66. Angie, you and Brian the boys have all my prayers right now. I hope you get some answers soon and feel confidant with whatever choice you make.

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  67. The prayers will certainly continue. I'm so relieved you might have another option in surgery. Keep us posted & your chin up!

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  68. My family will be praying for your husband, you and your family. Know that the Lord is with you.

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  69. Oh my, my eyes are welling up with tears. Lots of prayers for you all . . . I hope a miracle arrives at your house.

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  70. Brian, Angie and family, I was unaware that you had a blog...shame on me. I read the up date above and noted that you mentioned that Cat took a chance on Brian sending him to Canada. On the contrary, it was Brian and you that took the chance. Brian worked for me then, what we saw was an experienced, young man willing to move forward. It was to our benefit that you accepted as Brian brought his BB, and job related experience to a job in need of it. I was very proud of him then and I still am. I have always admired the strength that you and Brian have shown. Strength beyound what you see in everyday life. I am sure that from your perspective it does not seem that way. But form my viewpoint its amazing. In fact, so amazing that it must come from somewhere very special. If it didnt everyone would have it and we dont. I beleive it comes from your faith and from the love of Jesus, even though at times you might question yourself.

    This strength and perservance has been an inspiration to many. We dont often say it or share it as we dont know how it will be accepted. It was Brian's successful hip replacements and his encouragement to me that spurred me to get mine. Not a big deal in the scope of your challenges, but for me a big decison.

    In todays world we put athelets, and actors and others on pedistals and give them the admiration of heros, unearned. The truth is heros never know they are one. They never know how many they have inspired, or helped get through a difficult time or encouraged to take on a challenge. They never know becasue they dont consider what they do herioc, not even close. But they are! For what its worth Brian has been a hero of mine, since I have known him.

    We will keep you in our prayers. we too will pray for divine help, a healing hand. As i read these comments from all these caring people. From thgose that have not added commnets but are thinkiong and praying for you...I know that God is with you and He will always be with you both.

    God bless you both qnd your boys, Always in my prayers, Mark W.

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  71. Just wanted you to know ... my heart is with your family.

    I'll "keep believing."

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  72. Saying a prayer for you and yours.....

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  73. I am SO sorry to hear about your husband....my thoughts and prayers are with all of you. If you get a moment, check out my bloggy friend, Kori's blog, I think you and she could be a comfort to each other during this hard time. :-( April

    http://lifeasacferswife.blogspot.com/

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