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.
They did a brain scan on me and guess what they found...nothing.
Let us know if you can recommend this surgery. (I know this is serious, just thought I'd add a little levity. Is anything rising? No, dummy that's levitation. Oh, yeah.)
God bless.
Praying for all of you and all the doctors!!
May babies are awe inspiring. We have two children and two grandchildren that have come to us in May. The fullness of spring and the approach of the growth of summer. We are thrilled for you J.
We will be with you this week and during the weeks ahead. Remember that that map has a 16p nail right at Kansas City.
Prayers going up, good buddy. Please keep us posted.
Still praying for you Joe.
Many, many prayers for you and your family!
Your attitude is outstanding. From everything I've read and observed, you have exactly what it takes to win this deal. Keep up the good work. We're with you!
Still praying for you, Joe. Hope you're back soon to give us the good word....
Our prayers continue.....
Logan (Texas Termite), Beth & Nana
I hope they get it all, and you are relieved of this plight forever.
I hope they get it all, and you are relieved of this plight forever.
god be with you
my prayers for you
Has anyone heard anything from (Joe) MrConfettiMan?
any news yet?
Hey, Joe....
prayer bump
Thoughts and prayers coming your way. Good luck.
Prayers for your speedy and complete recovery, from another Joe.
Hey Joe;
If you pop in here, how's about an update?
Thinking of you and sending a ton of prayers. I'm looking for your home phone number. Guess I better go look in my emails in my home emails.
God Bless you friend.
You are still on my heart Joe. Hope you are well.
I missed this on the first go around - you and your family are in my prayers. Go get 'em Tiger!
I'm okay. Too tired to post. Recovery is much more difficult this time around and I've come a long way. They managed to get "it" all this time. Gross total resection. 100% of tumor gone. The Bad News: It's jumped to the next higher grade (III), which means six weeks of combined radiation treatment and a very tolerable oral chemotherapy followed up by a year of the same chemotherapy just to be safe. The Good News: I still plan to be here for a very long time. Joe (MCM)
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