Posted on 02/12/2005 11:42:12 AM PST by MrConfettiMan
For those who don't know me or aren't familiar with my screen name (I don't post much these days preferring to lurk in the dark), I'm one of the original members of the DC Chapter. I was one of the first people in front of the White House alongside Kristinn, Angelwood and Doctor Raoul giving grief to Bill and Hill. However, I'm not here to talk about that today...
Back in August, 2001, I was diagnosed with a brain tumor and a few days later had surgery. It was subsequently found to be a low grade tumor and since my surgery I've only been monitored with serial MRIs. I'm not going to revisit the past but if you're really interested, you can visit the source URL listed above. (For my previous threads on the subject visit this link: Free Republic Threads.) The site hasn't been updated since late August due to laziness and being too busy chasing a young child around the house. Our next child is due in late May, by the way. ;)
Well, after almost three and a half years of stable MRIs my latest scan showed no "significant change in size or extent" but did exhibit "one site of increasing enhancement". Change is not good. (By the way, since my last MRI three months ago I've not exhibited any clinical changes whatsoever.) My local (Annapolis) doctors told me they did not feel surgery was warranted as they did not feel they'd be able to resect a significant portion of the tumor. They offered me a protocol of stereotactic radiosurgery (Novalis - a one shot, highly focused zap) followed by Temodar but did not see a need for an immediate decision on my part. They did suggest a biospy in the near term to determine if the tumor has mutated to higher grade. They told me I could simply wait three months to get another MRI if I wanted. Overall, a somewhat passive approach.
My local doctors are fully aware of the fact that I've been going to Duke for the past three years. I was scheduled for an appointment at Duke but the weather caused a change in plans resulting in my having to Fed-Ex my films down there. I spoke with Dr. Jennifer Quinn from Duke on Thursday morning who said, "We need to get a biospy anyway so why don't I take these scans over to Allan Friedman and see if he thinks he can get a resection." I asked her to quantify resection. "Resection to Allan means 95% or more." A couple of hours later she called back and told me Allan said he can get it and you're in luck, he's got an opening on Thursday. Overall, a more aggressive approach. Those who know me, know I'm anything but a passive person.
Guess what? I'm having an awake craniotomy at Duke this Thursday. (I'm very psyched about the awake part.) Ideally, they told me to expect to be in the hospital between 3-5 days and including the hospital stay to be in the Durham area 7-10 days since I'm from out-of-town. If the pathology report shows the tumor has remained low-grade, I go back to what I've been doing for the past three and a half years. If not, further treatment decisions will have to be made (ie. radiation and/or chemotherapy).
My family (they're more like a small army) has been mobilizing ever since they heard the news. We don't have anybody local but they are coming from NJ, CT and CA to watch our daughter in MD and be with us in NC. I know I can count on it anyway, but prayers and positive thoughts are greatly appreciated.
Continued prayers for you!!
It sounds like you are on the ball as far as following through and not being passive. Always remember this isn't a spectator sport, you have to be an active participant. If there are times that you are too ill to handle it yourself you need a family member to act as a patient advocate for you so you don't get lost in the system. You will be in my prayers.
Best wishes. You are braver than I.
You and yours are in our prayers.
God bless and my prayers are with you.
From someone who has had three corneal transplants (a much less serious type of surgery, I know) where two of them were under a general and one under a local, may I suggest strongly
HAVE THEM KNOCK YOUR ASS OUT!!!!!!!!!
Of course, in my case, I literally had to watch them do the surgery on my eye from the inside, and hopefully you will be at least somewhat shielded from the operation. My surgery (the second of my three) literally wiped me out for over a year from the psychological affects, not the physical. The third and most recent surgery hardly bothered me at all in that way (I'm still in pain more than a year later, but hey, I can kinda see)
Goodness I sound whiny, sorry about that.
I trust that your surgery will be less stressful. Again, my prayers are with you.
I'll sure keep you in my thoughts on Thursday!
I said some prayers for you and your family. I will keep you in my thoughts. Good luck!
-RK
Prayers for you, Joe. God Bless you and yours.
Prayers from my family.
Best of luck to you.
Bless you. Prayers for you and your family.
We are confident that You are as near to Joe as the very breath he is breathing right now, and we are also confident that You will carefully orchestrate every part of his surgery on Thursday. You are his strength and his shield, and You will not leave him or forsake him. You have seen him grow in his faith and in his trust of You throughout this trial. Show him Your favor, Lord, and bring him steadily back to good health. Nothing is too difficult for You and we know that You will work all of this for his good and for Your glory. Grant him Your peace and confidence and may he feel the utter weighlessness of knowing that You are taking care of everything. In the Name of Jesus Christ we pray, Amen.
God bless you, brave friend!
good luck! And stay still, don't want them removing the good parts. :D
Prayer Eagles UP and God Bless Ya.
Continue to be strong.
best wishes and prayers!
Prayers for a good report and fast, full recovery.
I'm sorry about this, Joe, but you have shown us how strong you are and that you are prepared to fight like hell once again.
Here's hoping for the best possible outcome.
We'll do our part -- good thoughts and prayers starting right now.
Good luck and may God bless you and your family.
No sweat, Man - - keep a positive thought.
I recommend listening to good music, too. Seriously.
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