Honestly, Thursday night I didn't know how to put into words all that was stated at the doctor's appointment and I really needed to have some conversation / down time with Dave after Mom and my sister, Jean, aka Aunt Dee Dee, left. So I will attempt to cover all the bases of what was discussed. Mind you there is a lot.
OK, first of all as stated previously Dr. Needles had time to speak with us first prior to Dr. Forget coming in around 4:40. It was a true blessing to chat with him alone on what he thought Dr. Forget was proposing. He mentioned that Dr. Forget would most likely be recommending a complete resection of my right frontal lobe, then follow with chemotherapy (Temodar). Little shocker there for I vaguely remember Dr. Forget saying a complete resection. I didn't realize he meant ALL of my right frontal lobe section. We also discussed the Gliadel wafers and how he is not an advocate of it due to lack of definitive research along with the not so good side effects it could cause. The second option was taking Temodar now without surgery and monitor any signs of increased regrowth by MRI scans every two months.
After Dr. Forget arrived he explained that he is recommending a resection of the right frontal lobe minus the premotor area. Not the whole frontal section, just the anterior portion. A little relief. He sketched a picture of my brain and explained his proposal. Dr. Forget mentioned putting Gliadel wafers on the brain after the resection. The concern Dr. Needles had along with ourselves, for we had already read the research prior to coming to the appointment, was discussed. Dr. Forget said he just mentioned the Gliadel wafers to me on the phone Monday because he was trying to give me the "no regrets / holding back on any conventional treatment available" mentality. He wanted for me to know all my options for treating the cancer. Basically for me to be able to say down the road that I did everything conventionally possible to combat this. He also concurred he didn't think Gliadel was the best option due to increased risk during and after surgery (slow wound healing, blood flow constriction, edema, etc.). Just an option if we so chose it. Whew! That was one big praise. It was unanimous. No Gliadel!
Much more was spoken of in regards to the surgery. The biggest part is for Dr. Forget to remove brain tissue as close to the premotor area (posterior) without actually touching it. The premotor area controls just what the name says - motor development ie: moving my legs, arms, hands, fingers, etc. Below describes in a little more detail what I am trying to say in regards to this portion of my brain. Keep in mind the difference between the anterior and posterior lobes. We are looking to take away the anterior portion of my right frontal lobe. Not to touch the posterior (premotor) area. There is also a difference between the right and left frontal lobe functions. The right controls mainly a small portion of personality from what I have understood.
Frontal Lobe - Front part of the brain; involved in planning, organizing, problem solving, selective attention, personality and a variety of "higher cognitive functions" including behavior and emotions.
Click Here for a Diagram of the Frontal Lobe
The anterior (front) portion of the frontal lobe is called the prefrontal cortex. It is very important for the "higher cognitive functions" and the determination of the personality.
The posterior (back) of the frontal lobe consists of the premotor and motor areas. Nerve cells that produce movement are located in the motor areas. The premotor areas serve to modify movements.
Hopefully you are tracking with my wordy post thus far.
The other risk involved when a patient has their anterior right frontal lobe taken out is they have a 20 - 25% chance of personality change. Dr. Forget explained Thursday over the phone that it is called a "blunted effect". Basically how I would emotionally respond to things - not as excitable. "If you were a person who jumped off the couch and cheered loudly when Albert Pujols hit a home run after surgery you most likely will say 'That's nice, Albert hit a homerun.' without all the hoopla."
This portion of the treatment has been weighing on my heart. I am one of those people who is vivacious, cheering on the top people in my life especially with sporting events. Go Snodgrass men! I have always been one to cheer on those I love. Even my little sister, Jean, with high school basketball games I rooted for. She was a great player.
After surgery I would then take Temodar (chemo) orally till Dr. Needles deems necessary to stop. Temodar would start 10 days to 4 weeks post surgery.
The surgery followed by Temodar is a better option thus far from everything stated. We are not sure if this regrowth has already turned into a stage 4 tumor (glioblastoma). We won't know this until a pathology of the tumor has been performed after the surgery. We are playing a guessing game also by not knowing if the fingers of the tumor are branching out yet. The scans do not detect that. By taking out the right anterior portion of my brain it enables us to have a better prognosis in the years ahead by not allowing the cancer cells to attach to an axon and travel to other parts of the brain. We pray it hasn't done that already. The doctors are doubtful.
Since my tumor has been considered a mixed glioma it is hard for the doctors to say how it will act since it is a mix and not a pure astrocytoma or oligodendroglioma. This is a difficult call to make.
I forgot to mention at the start of this post that I took the time to ask if I could meet Karen, Dr. Needles nurse, personally. I had yet to meet her face to face. I have often spoken with her over the phone. It is good to have a face with a name. So prior to Dave and Nancy showing up Thursday I had time to chat with Karen. It was a good conversation.
Dr. Forget spoke with me again on Friday over the phone and relayed more information to me. Basically, the specifics of the surgery plus off-the-cuff stuff. Will he use the same incision site? Yes. Will the same "man hole" be used? Yes, and possibly a little more posterior due to taking out more brain tissue. Will he wear that same obnoxious tie post op? (This is a joke between him and I.) He said he did find the tie last night and he might consider finding another tie. I laughed. My friends later that night at my kitchen table said he should give me the tie to use as a headband to cover the hair loss from surgery. I about died of laughter thinking about this one. I may approach him with that idea. Dr. Forget is a great neurosurgeon with a wonderful bedside manner. I am delighted God put him in my path. I did tell him Friday over the phone that if we choose surgery he will be prayed over, especially his skilled hands. Don't touch that premotor area!
Lastly, my "second opinion" appointment with Dr. Linette has been changed to Wednesday the 5th at 9 am. JoAnn, his nurse / assistant, called to say I would have been "frustrated" on Tuesday for I could have waited at least 2 hours to see him. He is busy that day. I can concur with that one. I had to wait like that once before. Many thanks to JoAnn for even calling. I might call on Monday and see if I can get a verbal opinion over the phone, if possible. My records (the ones I had copies of) were sent to him overnight Thursday. Dr. Needles office is to send by fax the remaining records from May till now. Pray that all of the records will get there in time.
After speaking with Dr. Linette we should be able to make a decison about treating this pest in my brain.
Top Ten Praises Here So Far!
Not in any particular order of importance.
1. Dr. Forget is a personable man.
2. Dr. Needles getting to know the real me by taking more time.
3. Could get into Dr. Linette this quickly.
4. I am at peace.
5. If surgery is chosen - posterior right section will be spared.
6. God is merciful and loving.
7. For knowledgable doctor minds.
8. For prayer.
9. For meeting Karen, Dr. Needles nurse, personally.
10. That no matter what, all is still good.
Thanks for being patient as I have been typing this post for the past 3 days. Edit, type, edit, type, etc.
9 comments:
Kate,
So glad to know the details you're considering. Thanks for taking the time and effort to blog it all--I know it does you good to write it out, but it does us good to read it. I'm a visual person, so I have a more concrete idea of what I'm praying for as I picture your brain. By the way, I'm picturing it to be highly intelligent and a lovely shade of PINK (not the gray matter they talk about)!
Seriously, I'm praying for continued peace and total agreement btw/you and Dave as to how to proceed.
You are loved.
Tiffani G
Excellent description, Kate and Dave. I think people will understand (as much as possible) the information and options. Kudos! I know this was a tough post.
We love you, and we're praying for continued peace, strength, wisdom, guidance, healing and full recovery.
Kate, you're turning from a lay-person into a medical person. Who-da-thunk? It's so clear how you two have really done your homework and research and looked at all the options spread before you with more detail than most patients and husbands-of-patients would. I'm sure your panting public (panting to get posts from you) will have to do a lot of ruminating to digest all of the medical-ese, but from a medical type myself, you did a GREAT job editing and writing and editing and writing... Praying for you this dreary day. Not so dreary when I think @ you, though... Jobacks out
Hi Kate,
Ditto what Laura said, except that I'm so NOT a medical type. :-> Thanks for sharing so much info with us. I'm guessing it is a fraction of what you and Dave have had to process.
Enjoy your day with the guys! Blustery, rainy days can be lots of fun... I'm sure you will find a way to make it special.
Praying for you every day,
Stacey
Kate,
That must have been some meeting. It has to be a relief to have the knowledge and you did a great job explaining everything. It is very obvious how much you have absorbed and while decisions are tough your faith combined with your knowledge will see you through these trying times. I will continue to pray.
Love,
Heather
Kate, it was good to get a greater picture of what you're dealing with and the options you have, medically speaking. Thank you for posting the details and even the diagram - it helps us to track with you! Know that we are praying that the God Of Details makes his interest and involvement in each and every detail of your life known to you and Dave in the days ahead. We love you! Laura
Kate,
I think you are amazing!! I love the way that you are taking each option and carefully investigating each one with deep thought and prayer.
This post was very well done and explained wonderfully. I wish I could post as well as you.
Renee
Kate:
After that blog detailing all of that medical jargon so clearly and such heavy stuff, to hear your laughter come through at the end made me smile and have a peace knowing you got some peace! Through everything you keep your joyful, fun and optimistic attitude. I know that you and Dave are finding your comfort through God. And I pray that He leads you in the best direction, which I know HE will. Please know you are in my thoughts and prayers as you work through these important decisions. Love to all, Stacy J.
I am glad you are shring this with the blog world so we can all be praying for you and your family. God's blessings to you.
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