Saturday, September 3, 2016
Life Is Good!
Here it is, September 4, 2016. Most days, I don't think about having brain cancer. I am symptom free and have had no regrowth. I continue to have MRIs every 3-4 months to make sure. My newest treatment plan is eating a ketogenic diet. It is low carb, high fat, moderate protein. It's been shown to eliminate seizures and starves the tumor which needs sugar to grow. Yes, life is good!
Tuesday, October 1, 2013
Chemotherapy Treatment with Temodar, oligoastrocytoma, 1p/19q deletion
Is it October already? I haven't written a post in sooo long. I can't believe that it has been a full year since my second brain surgery. Maybe that's why I've been reflecting on things. I'm going to brief. The pathology report from the tumor showed it to be an oligoastrocytoma with 1p/19q deletion. That is great news. It indicates that the remaining tumor cells are chemo-sensitive to the drug temozolomide, brand name Temodar. I began taking Temodar in February. My doctor has me on a 5/23 cycle. That means I take the drug for 5 days in a row, and then I am off of it for 23 days. I take the tablets orally at home. I am two weeks in to my 9th cycle. The plan is for me to do 18 cycles. (Yay! Half way there.) The main side effect that I am having is fatigue. Did I mention that I am suffering from fatigue? I occasionally have nausea, but anti-nausea medicine works well for that. I will fill in the blanks sometime soon, but I wanted to get this update out. Someone told me that they were really worried since they hadn't heard anything, and they were afraid to ask. Sorry 'bout that!
Monday, February 11, 2013
Surgery and follow up
To say, "out of sight, out of mind" is not quite right..."out of brain, out of mind" isn't quite right either. I'm sure there is some witty something about why I haven't posted...probably simply because I don't want to put too much energy into what was, and I would like to put the whole darn thing behind me. In case you are interested...
The awake surgery procedure was fascinating. I was locked into some head cage (I didn't actually see it.) Then, positioned just right for my surgeon to get in through my skull to the right spot. They took me into the OR and explained the procedure, asked me what kind of music I wanted to listen to (The Avett Brothers), and put me to sleep while they positioned me and sliced my scalp and skull removing a piece of bone called a bone flap which was put back into place after the procedure. Apparently, they put me to sleep for the prep and then woke me up for the "resection" (the slice and dice part,) and then put me back to sleep to staple me back together. The most interesting thing that I remember from the surgery part was when they were asking me to open and close my eyes, and I could not close my left eye completely. When I told them, they looked more closely (that was the side that was downish,) asked me to open and close a bunch, and then they must of turned up the gas. I also remember them asking me to shake my right arm and then saying to shake it as hard as I could. (That makes me wonder how much I was even moving my arm initially.) I remember talking to the assistants during the procedure, and I remember trying to chit chat, asking to hear about them, and finally they flat out said, "We want you to talk to us." Well yeah, I guess that makes sense.
So, The Neuro ICU has been redone or added since my first surgery. It was really nice. Last time I was in a big room with a bunch of noisy people. This time I had a private room with one nurse for another patient and myself. It was so nice, that when they told me I could move to the regular floor, I got my doc to order another day there. I was able to have peace and quiet, listen to my guided meditation CD (from a program called "Beyond Surgery"), and not have too many random interruptions because I was still hooked up to various machines that they typically move from room to room on the regular floor. It was a good space with positive energy. TGH has a great Integrative Medicine program that works with Mind-Body and Energy healing along with traditional Western medicine. I had a "Healing Touch" Practitioner come in at least two times to work with me while I was there. I am psyched to have had that available to me.
It takes a while for the swelling to go down after brain surgery, so after I left the hospital, I didn't have another MRI until December. Once again, at this point, the decision needed to made about what type of follow up I wanted to do. Surveillance only, radiation and/or chemotherapy. In addition to talking it over with my Neuro-oncologist I met with a radiologist oncologist. Together, they helped my decide that the best path at this point is chemo only. If there should be regrowth (which there won't be), my new path might be to go back to see my surgeon and clean it. Then follow that with radiation and chemo together. Can't hurt to have a back-up plan, right?
The awake surgery procedure was fascinating. I was locked into some head cage (I didn't actually see it.) Then, positioned just right for my surgeon to get in through my skull to the right spot. They took me into the OR and explained the procedure, asked me what kind of music I wanted to listen to (The Avett Brothers), and put me to sleep while they positioned me and sliced my scalp and skull removing a piece of bone called a bone flap which was put back into place after the procedure. Apparently, they put me to sleep for the prep and then woke me up for the "resection" (the slice and dice part,) and then put me back to sleep to staple me back together. The most interesting thing that I remember from the surgery part was when they were asking me to open and close my eyes, and I could not close my left eye completely. When I told them, they looked more closely (that was the side that was downish,) asked me to open and close a bunch, and then they must of turned up the gas. I also remember them asking me to shake my right arm and then saying to shake it as hard as I could. (That makes me wonder how much I was even moving my arm initially.) I remember talking to the assistants during the procedure, and I remember trying to chit chat, asking to hear about them, and finally they flat out said, "We want you to talk to us." Well yeah, I guess that makes sense.
So, The Neuro ICU has been redone or added since my first surgery. It was really nice. Last time I was in a big room with a bunch of noisy people. This time I had a private room with one nurse for another patient and myself. It was so nice, that when they told me I could move to the regular floor, I got my doc to order another day there. I was able to have peace and quiet, listen to my guided meditation CD (from a program called "Beyond Surgery"), and not have too many random interruptions because I was still hooked up to various machines that they typically move from room to room on the regular floor. It was a good space with positive energy. TGH has a great Integrative Medicine program that works with Mind-Body and Energy healing along with traditional Western medicine. I had a "Healing Touch" Practitioner come in at least two times to work with me while I was there. I am psyched to have had that available to me.
It takes a while for the swelling to go down after brain surgery, so after I left the hospital, I didn't have another MRI until December. Once again, at this point, the decision needed to made about what type of follow up I wanted to do. Surveillance only, radiation and/or chemotherapy. In addition to talking it over with my Neuro-oncologist I met with a radiologist oncologist. Together, they helped my decide that the best path at this point is chemo only. If there should be regrowth (which there won't be), my new path might be to go back to see my surgeon and clean it. Then follow that with radiation and chemo together. Can't hurt to have a back-up plan, right?
Sunday, September 23, 2012
Home on Saturday
Just a quick note to let folks know that I was discharged from the hospital on Saturday. I'm at home with a strip of hair missing, about 30 staples, and a headache that comes and goes based on medication. I can't wait to share some details. It was really cool! Thanks for your love and support!
Thursday, September 20, 2012
Emily's surgery is over after 4 hours. The surgeon was very pleased with the outcome, and she looks great. She was even joking during the surgery. When they asked her to count, she asked if they wanted her to speak it in Spanish. She is in ICU now and expected to be in a regular room later. She expects to be home in 72 hours. That's all for now. Signing off for Emily, Suzanne (Mom).
Wednesday, September 19, 2012
Getting Ready
Well, my surgery is tomorrow. Today I am relaxing and getting things together for being at TGH for a few days. I am trying to get things set so that Gramp and Grandma can hold down fort...school, soccer, playdates, meals, etc. I know they'll be fine (even if it's not how I would do it...they don't even have to tell me. ;-)
I am reminding myself to trust my doctor and the Tumor Board at TGH that this is the best path for treatment. I've been doing lots of breathing exercises and meditation. I truly feel I am in a good place for this. Nicholas told me last night that I am definitely less stressed than I was a few days ago. It was really funny at the time, but good to hear.
My surgery is scheduled for 7:30 am, so I need to be there at 5:00 am. (Nice!) Seriously though, I am definitely glad it's the first surgery of the day for my surgeon. I think it is expected to take about 4 hours, and the PA told me that their goal is to get me out of the hospital within 72 hours.
Thanks to everyone for the well wishes. That energy is helping me keep the anxiety away! I feel so fortunate to be surrounded and supported by love. (That's you!)
I hope to have someone post an update soon after the operation.
xoxoxoxoxoxoxoxoxoxoxooxxooxoxoxoxoxoxoxoxoxoxoxox
I am reminding myself to trust my doctor and the Tumor Board at TGH that this is the best path for treatment. I've been doing lots of breathing exercises and meditation. I truly feel I am in a good place for this. Nicholas told me last night that I am definitely less stressed than I was a few days ago. It was really funny at the time, but good to hear.
My surgery is scheduled for 7:30 am, so I need to be there at 5:00 am. (Nice!) Seriously though, I am definitely glad it's the first surgery of the day for my surgeon. I think it is expected to take about 4 hours, and the PA told me that their goal is to get me out of the hospital within 72 hours.
Thanks to everyone for the well wishes. That energy is helping me keep the anxiety away! I feel so fortunate to be surrounded and supported by love. (That's you!)
I hope to have someone post an update soon after the operation.
xoxoxoxoxoxoxoxoxoxoxooxxooxoxoxoxoxoxoxoxoxoxoxox
Saturday, September 15, 2012
Another Surgery 9/20/2012
Here we are...4 years and 4 months since I had a craniotomy to remove the Grade II astrcytoma that decided my brain was a delightful place to take up residence. Well, it has begun to come back, and I am kicking it out.
I have surgery scheduled at Tampa General Hospital on September 20, 2012 at 7:30 am. That is the bottom line.
Details: After my surgery in 2008, I did not have chemo or radiation. Instead, I chose the surveillance route. In the beginning, I had an MRI every 3 months, then we stretched it out to 4 months. Along the way, we were watching the perimeter of the space where the tumor had been. From pretty much the beginning, we saw very slow growth around the edges that we attributed to scar tissue. That was not unusual. There were a couple of periods near the end of 2011 and the beginning of this year when there was more growth than expected, and we began to think that something other than scar tissue might be what we were seeing. We began monitoring every 2 months. By June, there was enough regrowth that I needed to make a decion about what to do. My options were: surgery, chemotherapy and/or radiation, a clinical trial, or continued surveillance.
A Grade II astrocytoma with gemistocytic properties is likely to reappear between years 3 and 5 if it is to return. If it does return, there is the possibility that it will be a higher grade and much more aggressive tumor. For those reasons, surveillance is out. I want to get rid of it before that can happen, before I start having seizures, and before I have any other complications. (Yes, I've been seizure free since my surgery in 2008. yay!) Other than surgery, the other options are not guaranteed to be effective, may not do any good at all, and may make me really sick. For those and other reasons, I have decided surgery is the best option for me. Surgery worked for me the first time, and I know I can handle it.
This surgery will be different from the first one, and may be more effective. It will be an MRI Guided Awake surgery. Freaky, right? Awake, really? The purpose being that my surgeon can get cleaner margins. From the JNCI (Journal of the National Cancer Institute), "[Dr.] Zhang points out, accurate determination of tumor margins is especially important for brain and other tumors that are surrounded by tissue that carries out key functions. For these tumors, surgeons do not have the luxury of taking a rim of surrounding normal tissue to better ensure negative tumor margins." Soooo...the surgeon may ask me to blink, wiggle my fingers, stick out my tongue, etc. while he is determining where to cut. My big question was, "So, what if you touch something and I can't respond, then you've already gone too far, right?" The doctor assured me that the brain is resilient and that it wouldn't be permanent loss of ability. I believe that this will be more effective in the long run.
So, here I am, thinking good thoughts and knowing that I will soon be well. Please do the same!
That's the basic story.
I have surgery scheduled at Tampa General Hospital on September 20, 2012 at 7:30 am. That is the bottom line.
Details: After my surgery in 2008, I did not have chemo or radiation. Instead, I chose the surveillance route. In the beginning, I had an MRI every 3 months, then we stretched it out to 4 months. Along the way, we were watching the perimeter of the space where the tumor had been. From pretty much the beginning, we saw very slow growth around the edges that we attributed to scar tissue. That was not unusual. There were a couple of periods near the end of 2011 and the beginning of this year when there was more growth than expected, and we began to think that something other than scar tissue might be what we were seeing. We began monitoring every 2 months. By June, there was enough regrowth that I needed to make a decion about what to do. My options were: surgery, chemotherapy and/or radiation, a clinical trial, or continued surveillance.
A Grade II astrocytoma with gemistocytic properties is likely to reappear between years 3 and 5 if it is to return. If it does return, there is the possibility that it will be a higher grade and much more aggressive tumor. For those reasons, surveillance is out. I want to get rid of it before that can happen, before I start having seizures, and before I have any other complications. (Yes, I've been seizure free since my surgery in 2008. yay!) Other than surgery, the other options are not guaranteed to be effective, may not do any good at all, and may make me really sick. For those and other reasons, I have decided surgery is the best option for me. Surgery worked for me the first time, and I know I can handle it.
This surgery will be different from the first one, and may be more effective. It will be an MRI Guided Awake surgery. Freaky, right? Awake, really? The purpose being that my surgeon can get cleaner margins. From the JNCI (Journal of the National Cancer Institute), "[Dr.] Zhang points out, accurate determination of tumor margins is especially important for brain and other tumors that are surrounded by tissue that carries out key functions. For these tumors, surgeons do not have the luxury of taking a rim of surrounding normal tissue to better ensure negative tumor margins." Soooo...the surgeon may ask me to blink, wiggle my fingers, stick out my tongue, etc. while he is determining where to cut. My big question was, "So, what if you touch something and I can't respond, then you've already gone too far, right?" The doctor assured me that the brain is resilient and that it wouldn't be permanent loss of ability. I believe that this will be more effective in the long run.
So, here I am, thinking good thoughts and knowing that I will soon be well. Please do the same!
That's the basic story.
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