Five Week Update
Posted by Casey on October 20th, 2009
Dad and I flew down to Houston on Sunday. We spent the day watching football waiting for things to get started on Monday. (For those of you that know me I’m not a huge football fan, so clearly I was already feeling the nervousness of the appointments!) Monday morning I started with bloodwork. I then went for an MRI, followed by a new test for me, an MRS. It was the last test for the day, which meant we had a bit of free time so last night we went to see Law Abiding Citizen. It was the mediocre entertainment and tasty popcorn we needed to forget the stress.
Today started a bit earlier and lasted a lot longer. At 7:00am I had my PET CT, and then the doctor appointments began. We went to see Dr. Slopis but were quickly asked if we would visit Dr. Weinberg (my surgeon) first. According to the nurse, Dr. Wolff said that Dr. Weinberg would walk us through the results of the tests and discuss our plan for biopsy and then we’d meet with Dr. Wolff and Slopis to discuss the plan overall later. Something in her voice made me think she already knew the results. Of course as soon as Dr. Weinberg walked in he was sharing the news… the MRI is showing growth of the two spots. The latest version is posted above… the two areas of concern are circled. He also told us that the MRS supports that idea, showing that same suggestion of growth. He didn’t have the results of the PET CT yet as I had just gotten out of that scan.
The conversation quickly went to the biopsy. We had been told that the biopsy would be performed on Thursday if needed, but unfortunately Dr. Weinberg was scheduled for a six-hour surgery and is now unavailable (since mine wasn’t a confirmed appointment). He’s not in surgery on Fridays and is out all of next week. So he gave us two options… he could recommend a surgeon for Monday or we could come back the following week and have him perform the surgery… It was an easy decision for me, so we’ll be coming back on the 2nd of November to start prep for the biopsy.
By the time we made it back to Dr. Wolff’s office, he was in with other meetings so we were asked to come back at 2:00. Dad and I grabbed lunch and went to sit in the park to enjoy the sunny warm weather, and keep our minds off of all of this.
We met with Dr. Wolff and Dr. Slopis and a med student for a couple of hours, discussing the PET CT, medications, treatment options, etc., etc. Most interesting was the results of the PET CT. The scan shows no signs of growth and, if anything, appears to have some level of fading of the area of focus. So they were quick to point that out as a sign of hope. Dr. Slopis also gave me a recommended switch to my prescriptions to possibly help keep more level doses and hopefully help soften my seizures. I’ll be taking smaller doses three times a day instead of larger ones twice a day.
Finally, we discussed the treatment option that Dr. Wolff is leading and went to meet with Dr. Brown who is also working on the study. He explained in more detail exactly what the plan involves and how it is intended to provide more specific treatment recommendations based on the slight differences in cells in my tumor vs. cells in someone else’s of the same kind (i.e., my brain tumor vs. someone other brain tumor). It’s a very interesting program, and I definitely want to take part in it.
So what now? We wait an additional two weeks. I’ll be coming down on the 2nd, having scads of tests on the 3rd to prep for surgery, and having the biopsy on the 4th. I’ll then meet with Dr. Wolff on the 6th to discuss biopsy results and make decisions on treatments as/if needed.
Sorry for the long rambling. Just wanted to get the word out. Hope you’re all doing well.
Love,
Casey
Thanks for the update. I was wondering how you were doing.
GOD say’s
We will all be tested by fire. Some of us will go in with a lot wood & straw, and some with gold & silver. Well you can imagine the outcome
I think you’r gonna be allright
We love Ya Casey
Todd & Teresa
Dear Casey –
Through God and all the prayers and support of those who know and love you, you’re going to get through this.
Love you – Lucy, Kevin, Domi, Cat and Tess
Dear Casey,
STAY STRONG!! God, your family,and all your wonderful friends are standing beside you !!
Thinking of you my dear friend & praying for the best for you & your well being. love, Tricia
Thanks for the update! Let me know if there is anything you need…I’m just down the street (even with this construction). Thinking of you!
My Friend… Yet another challenge for you to face, which I know you’ll tackle with your usual resolve and strength and grace. You’re in my thoughts, with hope.
Casey my dear friend…I am sending you all good thoughts and love as you go through this…let me know if you need anything. I think a Punch lunch is way overdue…
I will pray for you and your strength will get you through. Let us know if you need anything. Keep us posted.
Casey – you’ve had more than your share – the big guy up with Grannie knows your strengths – we pray and send you our strengths – glad you are staying with Dr. Weinberg- he’s the best.
Love from Texas
Ugh, Casey, so sorry about the growth per the MRI — confusing about the PET CT, huh? I think inconsistent results like this are almost harder to deal with than bad news, and waiting is the worst. But I know your strength positive attitude will carry you through the biopsy. We will be going back to Houston ourselves on Nov. 16th – wish it was the same time you’ll be there! Thank you for the update and hope to see you again one of these days soon!
Casey-my thoughts are always with you-
Love U, my old friend…
I love you so! Sending you lots of love and positive thoughts. Hopefully an evening with Ray will be a welcome peace the following week. Hugs!
I’m with you, brother, hang in there!
Sending lots of warm thoughts, take care Casey.
Hi Casey – thanks for the update – your note was marked as spam by gmail – how rude! Looking forward to hearing about your trip.
Hi Casey, we’re all praying for you, and know that I’m finding strength in your journey. We all need that! You’re never, ever alone. ~Cara
Hey Casey – thanks for the thoughtful update and the photo/scan. I touched base with Julie Boyden last week and she says “Hello” and we’ve both been thinking about that damn cancer that keeps crawling back. We’re glad you’re as strong as you are and that so many people love and care for you! Hang tight on the 2nd! Loads of love and good energy. Janna
Casey: I thought of you this morning reading the NY Times front page article on the Anderson C. C. there in Houston. Another good friend from Clarksburg, Ca., (Patty Bogle, past-CEO of Bogle Winery) was just admitted for AML. You two would be an inspiration for each other. Her daughter Jody Bogle VanDerpol is a colleague I met in teaching. You are in my prayers & may you & your dad & family be given strength, continued faith, & courage in this journey. Your articulate way of describing your journey, appt., scans qualifies you for a physician’s assistant all the way! (SW traveler Denver-Minneapolis)
Genene, Olympia, WA./Davis, Ca.
Casey!
When will you be back from your biopsy? I’m planning on coming to MN on Nov 4th and staying for a week or so. I’d love to see you! Lots of love and prayers.
Lise
Casey, Your strength is truly amazing! You are in my thoughts in prayers! Stay Strong.
Praying for you extra these next two weeks, Casey! Try to relax if possible. My family sends their love!
Dear Casey –
Just wanted you to know we’re thinking and praying for you. You are one of the strongest people I know and your strength will get you through this next battle. Only good thoughts coming your way from Austin!
Love to you!
hi casey
thinking about you today…..we love you