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.
We will be praying for you Joe.
I know our little gang here in Florida is sending special prayers your way. We remember very well our fun get-together in Orlando several years ago. Till we meet again, best wishes.
Leni
You will be in my prayers Joe. God will prevail.
Thanks for all the prayers, my friends.
My family and I appreciate them very much.
I join with the others here lifting you up in prayer for a successful procedure and for peace and blessing for all your family!
Trust me, being awake during the surgery is a good thing. They put you under at the start, open up the skull and then wake you up at some point. The reason they do this is to ensure they are not getting too close to sensitive areas of the brain during the procedure. In my case, they told me they primarily wanted to make sure the surgery didn't result in any unnecessary weakness on my right side. In other situations, I believe they will show patients flash cards with words and ask them to spell the word and various other exercises related to speech, math, colors... Once the surgical part of the procedure is complete, they put you back under and stitch you back up. The only item I'm not quite sure about is whether I'll remember anything or if they'll give me "something" to forget the whole experience. Since I'm an engineer, I find the whole idea rather fascinating. We were talking about it at work on Friday when the idea of filming it with my camcorder came up. It's not exactly a sterile device, though. :)
It seems to me that you are well covered in prayer. I'm praying for your surgeon!
8-)
God bless and keep you Joe.
Thanks for the prayers, my friend.
Henry, the face of Duke's Brain Tumor Center, is the person I first contacted after deciding to consult with their facility. He actually called me the Wednesday before Thanksgiving after reviewing the first set of films I sent down there for evaluation. I've met him several times during the past three years-plus. He and Allan are not related, by the way.
Oh, I still have the freepmail on gamma knife you sent me back in Feb '02 in my inbox. :)
>>brother, I know your situation well...
Thanks for the detailed response, for sharing your story with me (us) and for the prayers.
You have my prayers.
Yes, I did. In the very last sentence of the main "story":
I know I can count on it anyway, but prayers and positive thoughts are greatly appreciated.
You can count on that from me.
Godspeed.
Just tell the surgeon you want to wake up with warm feet. You see, after they knock you out, they chill your whole body to about 40F to minimize metabolism. The purpose of the recovery room is to bring you back to room temperature.
To get out of the hospital, pinch a cute nurse on the ass! You won't be laying around and watching TV for much longer:)
I will be praying for you frequently. God Bless.
I will keep you in my prayers - hugs from afar and here's to licking this illness!
We are with you again in prayer and you will pull through this one too.You have traveled a long hard road with a smile and courage and we will pray for strengh and healing Beautiful,God is with you and we hold your hand friend,fatima
God's Blessings to you. You will be in my prayers.
Joe, you're going to be FINE!!! < :D
Prayers on the way.
It's all about attitude Joe. You've definitely got the right one.
Best wishes.
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