Posted on 12/08/2001 8:43:04 AM PST by MrConfettiMan
Hi, everybody. During my last update I told you I didn't think you'd here from me again until after the holidays. I was wrong. I've been doing quite a bit of work on the site where I'm chronicling the road I've been traveling since August 19 of this year, Joe's Journey - Failure is Not an Option. Specifically, the Support Sytem page contains some pictures of the Prayer Network Map I told you about on my last thread. The pictures currently don't do the map much justice but have a look anyway. (MrsCM is researching digital cameras and we may be purchasing one in the very near future.) There are over 150 pins on the map and a vast majority of them are freepers. Thank you.
On the medical front, I'm seeing a local neurologist on Tuesday to talk about how we might adjust my medication in the hopes of preventing any more seizures. I'm not having them frequently by any means, but there's no reason for them to be happening at all at this stage. Also, I called The Brain Tumor Center at Duke the Tuesday before Thanksgiving. I told them I was inquiring as to what their organization could do for me. They told me I should send them MRIs, pathology slides and medical records. They also told me Dr. Henry Friedman would be calling me before the day was over. They took my work number, home number and cell phone number.
Dr. Friedman called me at home at around 5PM. He was all business. He wanted to know my situation. I told him I presented with seizures on August 19th and had a craniotomy four days later on the 23rd. I explained that both Dr. Peter Berger (at Hopkins) and Dr. Marc Rosenblum (at Sloan-Kettering) had seen the pathology and they agreed it was a grade 2 astrocytoma. I told him I'd already sent my records to Sloan-Kettering for review and had physically visited the docs at Johns Hopkins Hospital. Both had recommended a wait-n-see approach. He asked how much of the tumor was removed and I told him I was told it classified as a gross total resection. He said, "Yeah, you're done."
He explained that Dr. Berger was the best in the world on reading brain tumor pathology. He suggested I allow one of the premier brain tumor centers in the country to monitor me (send them my MRI scans every 3 months and make a personal visit every 6 months). He clearly stated I hadn't seen one of those big brain tumor centers yet, which was a clear message to me that he did not consider MSK or JHH to be a "brain tumor" center. He suggested Duke, MD Anderson or UCSF. I asked what the procedure would be should I select Duke. He said send us your records and after we review them we'll call you back to schedule an appointment.
I finally got around to sending my "stuff" to Duke on Thursday, November 29, by Fed-Ex. I used the tracking number on the Fed-Ex site the next day and saw it had arrived safely. I was planning to call them on Monday, December 2, to see what the timetable would be for getting a call back. However, that proved unnecessary.
On Sunday, December 1, I received a phone call from Dr. Henry Friedman. (Sunday? The man is very dedicated.) He asked what I'd been told about my craniotomy. I explained that immediately after the surgery my neurosurgeon told my wife and I he felt confident they removed about 90-95% of the tumor. Dr. Friedman said, "Yeah, it looks like a very good resection." (My heart took another leap for joy at hearing this and the tears started welling up in my eyes.) He went on to say he was waiting for their pathology lab to report back and then they'd call me back with their recommendation. He asked if I was planning to visit their facility. I told him I thought that was the standard protocol and both my wife and I were planning to make the trip.
I still haven't heard back from Dr. Friedman, though I gently pinged him on Friday. After hearing from him, we plan to make an appointment at Duke. (Note to freepers near Duke who have already generously offered their homes to my wife and me, I'll be in touch after we've arranged the appointment.)
Fellow freepers, I'm feeling really well these days. I'm at the end of the initial learning curve period that goes along with getting a diagnosis of cancer and am once again finding myself with free time. Free time? What's that? The other day at work I suddenly remembered I had brain cancer and realized that thought hadn't been lingering in the back of my mind for the last couple of hours like it usually does. I expect life to only get better in 2002.
Merry Christmas and Happy New Year!
If you're up at this time of the night,
you'll notice that pin by Kansas City seems to almost glow.
Going to mass, you'll be in my prayers, all things are possible with GOD! :)
Thank You Father for the many blessings You are giving to our dear brother! Please continue to sustain and uplift him as You are erasing every cancer cell from his body. Thank You, Dearest Lord! In Jesus' name I ask these blessings for Joe and his family, that Your name be praised and glorified...Amen!
We hope and pray you will have a Merry Christmas and a very Happy New Year.
I hope things go well for Joe.
Adding you to the prayer lists, brother!! Have seen the Lord do many wonderful things in answer to such prayers!
"Beloved, I wish above all things that thou mayest prosper and be in health even as thy soul prospereth." 3 John 2
On the seizure medications, they may have to juggle them around to get the right control. We are still praying for you.
We learned this last month that my mother-in-law had a uterine tumor. Her surgery didn't go nearly as well as yours, but she's starting to show her normal fighting spirit again.
She still has five weeks of radiation to go, but hopefully she won't need chemo. I just wish we had better drugs to fight these diseases.
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