We're Goin' Back In!

Me, myself and I ^ | February 12, 2005 | self

[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.

[trussell]

Prayer ping update. See post 340.

Please post your replies to MrConfettiMan

To: All

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)
 

340 posted on 03/11/2005 1:40:34 PM MST by MrConfettiMan (Failure is not an option.)

[ Post Reply | Private Reply | To 339 | View Replies | Report Abuse ]

MrConfettiMan, My prayers continue for you. God's healing hand over you. Lord, please heal Joe. Surround him with your angels. Provide his family with comfort and peace. Guide the doctors to give the best care available. In Jesus' precious name. Amen

Pegita - thank you for the ping.

Blessings,
trussell

If you want on/off my prayer ping list, please let me know. All requests happily honored.

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)
 

[since1868]

Does anyone know if MRC is from Northern NJ he looks very familiar.

[Tymesup]

Best wishes for a speedy recovery.

[Kathy in Alaska]

Prayers continue, MCM, for your recovery and continued treatment. Hurrah for such good news.

[AppyPappy]

Attaboy, Luther.

[68-69TonkinGulfYachtClub]

Offering my prayers

[68-69TonkinGulfYachtClub]

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)

340 posted on 03/11/2005 12:40:34 PM PST by MrConfettiMan (Failure is not an option.)

[Matchett-PI]

I love that good news!! Will continue to keep you in my thoughts and prayers.

[lakey]

The Good News: I still plan to be here for a very long time. Joe

We plan for you to be around for a very long time, too, Joe. God's blessings on you and yours!

[Kitty Mittens]

Praying for you Right Now, MrConfettiMan!

[Taxman]

Prayers up for you and your family, Joe.

We expect you to be around here for a very long time to come!

[oceanperch]

Yeah! Prayesr will continue for your total recovery this coming year.

Can't wait to hear about the new baby you had time to make coming in May.

Exciting things await you.

Perservere, endure and give all your Glory to God! Amen? Amen!

[oceanperch]

Hey just wanted to tell you how much it helps that you are now adding the updates to your ping and post to reply to.

Great extra! Thanks.

Hope the Code man is doing well with the new meds. Hugs....OceanPerch, King Vanity and the Boyz

[tuliptree76]

Prayers for your recovery.

[Interesting Times]

Hang in there, Joe. Prayers are ongoing...

[trussell]

Hi OP!! Hugs back to you, KV and the boyz!!

I'm glad you find that helpful! I had hoped it would help!

[flaglady47]

You know, I'd like the "awake" part of the surgery too. If you have to have surgery, I'd rather not have to deal with anesthetics that have their own inherent dangers. But the idea of being awake is appealing because you can watch what's going on. I had to have a procedure done some years back where I was awake for it, and it was real interesting. Now I suppose you have to have a certain stomach for this, but if you are a curious person, it really can be fascinating. So enjoy what you can of this procedure, which will help you and make you better faster, and meanwhile you'll learn a lot to boot.

[BlessedBeGod]

More prayers on the way!

[Alamo-Girl]

PRAISE GOD!!! Thank you for the update! Prayers continue...

[amom]

You have my ongoing prayers, as always, Joe. I am so pleased to hear they got 100% this time. Rest and recover well.