Last time, I went over Temodar chemotherapy. Just to sum it up, it was 24 months worth of cycles, and then, it would be monitored every 3 months. By the time I made it to the end, I was thankful to be done. There wasn't a guarantee how long it would last, so I was hoping for it to last as long as possible. You know, being "optimistic." Inside my head, I was hoping on 2-3 years, but really it was more like 1 year or less.
I went in for my MRI, following up with Dr. Paleologos. There was new growth of the brain tumor, which was more aggressive then usual. Blast! Dr. Paleologos tried had me try Temodar again, but I had no such luck. It was then the doctor recommended radiation and chemotherapy for a conjunctive use. Temodar, only a lower dose, for 40 days straight.
There are lots of different radiation therapies that doctors use, depending upon which cancer it is. In my case, in which the tumor had upgraded then to an Anaplastic Oligodendroglioma Grade 3, I was afraid they were going to old school radiotherapy. Intensity-Modulated Radiation Therapy, Cyber Knife, Gamma Knife, and Proton Therapy are the major ones I looked into. Now oligodendrogliomas are an infiltrating type of brain tumor, so the last three are sadly inapplicable to me, as they are known for being "too exact." Oligodendrogliomas have "fingers" with grow into your brain, making appear fuzzy on the scans. That means that brain tumor and actual brain matter can be hard or impossible to separate.
So after consultation which with Dr. Stutz, my radiation oncologist at local Good Samaritan Hospital, and Dr. Paleologos, my neuro-oncologist, IMRT was chosen to be the best for my tumor. I was to get 40 sessions of it, after they prepared a rather tight mask out of a semi-flexible, plastic material.
IMRT is a relatively new form of old school radiation. What is does first is CT scans my head, allowing them to make adjustments to my treatments. (40 CT scans...scary, right? I figure I already got cancer from God-knows-what, what's a little more radiation?) Then, it shoots modulated x-ray beams though my head roughly the shape of my tumor, plus a margin to get any cells, or "fingers" I called them above. 20 minutes and I was done. I had no side effects except losing my hair (which NEVER came back, thanks gene pool) and extreme tiredness. Which went away, eventually.
Long term effects? I am not as sharp as I used to be. I remember having the memory of an elephant. Now, I am slower. I feel dumb. Oh well, at least I am alive, right? Of course, the radiation didn't last, either. It was just a little part of the process which led me up to more chemo and eventually my second surgery in November of 2013.
I got to say thanks for getting though my story so far. I promise to post an update though current day soon. Then, I don't know. I am open to suggestions (leave them in the comment below)!
Showing posts with label apraxia. Show all posts
Showing posts with label apraxia. Show all posts
Thursday, September 18, 2014
Wednesday, September 10, 2014
Chemotherapy
Greetings from a rainy, Chicago day. I have been going out walking at least one mile every morning, since it clears my head, wakes me up, and makes me feel energized. But because walking is not ideal on the stormy morning, I'm posting an update to my story.
Summer had been with me about 3 months at that point, and I was the happiest that I've ever been. This is the one, I told myself, and I started thinking about getting married. Unfortunately, my brain tumor decided it wanted to start growing again.
I had been having MRIs every 3 months. Dr. Melian, the oncologist who was reading my MRI along with the radiologist, had been going back to 6 month scans. Both did not realize they needed to go back further that to see the subtle change. Dr. Melian realized this, and decided to go back to a year's worth and before, and spotted the change.
This caught me by surprise. I had been stable for about 3 years. Not now! I was doing so good, I had a girlfriend, and life began turning around for me, and my brain started wreaking havoc again. My doctor was a radiation oncologist, so after the tumor board met, and recommended RT (radiotherapy). From all the stuff I was reading, is it generally not wise to do brain surgery again, knowing that the surgeon got as much of it that he could, leaving me with two choices: radiotherapy or chemotherapy.
Luckily, I had a new tool in my arsenal. Summer asked people she worked with, and someone gave her a name Dr. Englehart from Chicago University (I think?). He was the neurosurgeon, and as I said, surgery wasn't an option, so he referred to to Dr. Paleologos and Evanston Hospital, who is a oligodendroglioma specialist, and the first neuro-oncologist I ever had. We called for an appointment, and everybody was very nice to me there. A woman called a "nurse navigator" helped me out, getting my medical records from the very beginning at Morris Hospital all the way to current day.
Dr. Nina Paleologos put me though a full exam. She explained the dangers of radiotherapy, and we would to prevent from getting it for as long as possible. We decided was best to use Temodar chemotherapy. It came in pill form, and I was to take a set amount of dose for 5 days a month, over a span of 24 months. So we decided that felt like the right path to go.
We did a lot of living at that time. I was still working, we got married, we had a baby, we went to California and Hawaii, attending family functions. I was living though the chemo.
At first, it was easy to tolerate. Within 6 months, it had reduced the size of the tumor, and the doctor was happy with the results. After that, it stopped reducing the size, and held it steady for the rest of the time I was on it. About a year into it, I was tolerating it less and less. It had a funny taste to it, my food tasted weird for about a week, the taste made me nauseous, and eventually led to me throwing up the pills. I made though the 2 years worth of cycles, then I was done.
I truly can say it was a relief, but the relief didn't last past a year.
The next step is radiation, or radiotherapy, and I tell you guys about that next time.
Summer had been with me about 3 months at that point, and I was the happiest that I've ever been. This is the one, I told myself, and I started thinking about getting married. Unfortunately, my brain tumor decided it wanted to start growing again.
I had been having MRIs every 3 months. Dr. Melian, the oncologist who was reading my MRI along with the radiologist, had been going back to 6 month scans. Both did not realize they needed to go back further that to see the subtle change. Dr. Melian realized this, and decided to go back to a year's worth and before, and spotted the change.
This caught me by surprise. I had been stable for about 3 years. Not now! I was doing so good, I had a girlfriend, and life began turning around for me, and my brain started wreaking havoc again. My doctor was a radiation oncologist, so after the tumor board met, and recommended RT (radiotherapy). From all the stuff I was reading, is it generally not wise to do brain surgery again, knowing that the surgeon got as much of it that he could, leaving me with two choices: radiotherapy or chemotherapy.
Luckily, I had a new tool in my arsenal. Summer asked people she worked with, and someone gave her a name Dr. Englehart from Chicago University (I think?). He was the neurosurgeon, and as I said, surgery wasn't an option, so he referred to to Dr. Paleologos and Evanston Hospital, who is a oligodendroglioma specialist, and the first neuro-oncologist I ever had. We called for an appointment, and everybody was very nice to me there. A woman called a "nurse navigator" helped me out, getting my medical records from the very beginning at Morris Hospital all the way to current day.
Dr. Nina Paleologos put me though a full exam. She explained the dangers of radiotherapy, and we would to prevent from getting it for as long as possible. We decided was best to use Temodar chemotherapy. It came in pill form, and I was to take a set amount of dose for 5 days a month, over a span of 24 months. So we decided that felt like the right path to go.
We did a lot of living at that time. I was still working, we got married, we had a baby, we went to California and Hawaii, attending family functions. I was living though the chemo.
At first, it was easy to tolerate. Within 6 months, it had reduced the size of the tumor, and the doctor was happy with the results. After that, it stopped reducing the size, and held it steady for the rest of the time I was on it. About a year into it, I was tolerating it less and less. It had a funny taste to it, my food tasted weird for about a week, the taste made me nauseous, and eventually led to me throwing up the pills. I made though the 2 years worth of cycles, then I was done.
I truly can say it was a relief, but the relief didn't last past a year.
The next step is radiation, or radiotherapy, and I tell you guys about that next time.
Thursday, September 4, 2014
Music
At first, I played the flute, all the through 12th grade. My uncle Tim gave me then first flute I ever owned, and I still own. It has an interesting tonality, being a nickle coated, as opposed to aluminium coated or solid silver (and the annoying fact that it had to me wiped down after playing it). It's had a dark metal appearance, which I prefer being the only male flutist. That's me...always somehow different.
As a side-note, my private flute teacher, Bobbi, pointed out the fact that I wasn't to completely close my airway. She wanted me to work it, but I could never overcome it. Could it have been an early sign of my brain tumor?
As a side-note, my private flute teacher, Bobbi, pointed out the fact that I wasn't to completely close my airway. She wanted me to work it, but I could never overcome it. Could it have been an early sign of my brain tumor?
It a shame I didn't stick with it after all these years, because I actually very talented. By high school, I never practiced or took my flute home...just showed up to band practice, played, and move on. Being that age, I was desperately wanting to get away from it. Teasing was the main issue, and the fact I was quiet or shy. I ended up in symphonic band as a 2nd chair, second only to a best flute player I have heard at the high school age level...and I didn't give a crap at that point.
Meanwhile my dad picked up an electric guitar - which I took to in a big way. I started strumming and strings, learn chords, and eventually learn my first riff, "Man in a Box" by Alice in Chains. I practiced guitar for most of the time I should have been dating women! I was even in a band. "Four Cold Seasons," the band was called, featuring Matt, Dave, Jeff, and me. We practiced only a few months out of the year (which my future wife attended).
It was later on, after I was out of high school and in college, I was in my first serious band (around 1998 - 2000). We were called Believe at one point, and later, Pantheion. There were six of us - John, Justin, Joe, Kenny, Mike, and myself. We were all confused about the style of music we should be playing. Three of us are metal heads/rock addicts, our keyboardist loved pop rock and alternative, our drummer loved 60's and 70's music, and we had a singer who sounded like Frank Sinatra. We played a mixture of the classic rock, metal, alternative, pop, and progressive rock. It sounded like mix of those styles and we - frankly - couldn't pull it off.
I quit the band, about the time I started my career in computer development at Speigel. Any music I wrote would have to be on the part time basis. But, of course, working a 40+ job schedule and having to drive one hour back left me little time to do anything meaningful.
It was later on, after I was out of high school and in college, I was in my first serious band (around 1998 - 2000). We were called Believe at one point, and later, Pantheion. There were six of us - John, Justin, Joe, Kenny, Mike, and myself. We were all confused about the style of music we should be playing. Three of us are metal heads/rock addicts, our keyboardist loved pop rock and alternative, our drummer loved 60's and 70's music, and we had a singer who sounded like Frank Sinatra. We played a mixture of the classic rock, metal, alternative, pop, and progressive rock. It sounded like mix of those styles and we - frankly - couldn't pull it off.
I quit the band, about the time I started my career in computer development at Speigel. Any music I wrote would have to be on the part time basis. But, of course, working a 40+ job schedule and having to drive one hour back left me little time to do anything meaningful.
Why am I going on about this? After diagnosis and resection, I lost use of my right hand. As much I tried, I could not reliably open and close my hand. Forget about finger independence. It hurts so badly that I can't play anymore, both my guitars and my flute. Music is having a major impact in my life, but I just can't play how like I used to, and because of this, I am very hesitant to play in front of others. I can't explain the "hurt" feelings I have on the inside. That you have to take my word on.
I traded all my ability to play for my beautiful wife and my son, after all. I don't think it was a bad trade. :-)
I traded all my ability to play for my beautiful wife and my son, after all. I don't think it was a bad trade. :-)
Wednesday, August 27, 2014
The Love of my Life
The last time I ended a blog entry, I promised to talk about my wife a little bit.
In August of 2008, I decided to join Facebook. I started adding friends and acquaintances, and she was listed from my high school, Minooka. Now, she was a friend, not too close, but I definitely remembered her. I remember her coming to band practices occasionally (I was in my first band) and being very cute.
Then I noticed her workplace was in Silicon Valley, California. At the time, I was working for Creative Automation (now Valid USA), and doing database programming. "Wow," I thought to myself, and briefly entertained the notion of us being in the same profession. I whipped up a quick email, sent it off.
About a week later, I noticed and her reply. It was August 7th. There was an instant connection. We talked online over Facebook, which eventually led to talking the phone for 3 hours at a time, to me asking her out on a date.
She's a nurse practitioner, by the way. Which makes what I'm about to say to her a little more mind blowing. I asked her "Does it matter that I have a brain tumor?" "Not at all", she said. She explained we were all going to die someday, what matters is the experience we are having right now. With that out of the way, I fell in love with her.
She has been instrumental in my survival, and I am blessed to have her and my son!
In August of 2008, I decided to join Facebook. I started adding friends and acquaintances, and she was listed from my high school, Minooka. Now, she was a friend, not too close, but I definitely remembered her. I remember her coming to band practices occasionally (I was in my first band) and being very cute.
Then I noticed her workplace was in Silicon Valley, California. At the time, I was working for Creative Automation (now Valid USA), and doing database programming. "Wow," I thought to myself, and briefly entertained the notion of us being in the same profession. I whipped up a quick email, sent it off.
About a week later, I noticed and her reply. It was August 7th. There was an instant connection. We talked online over Facebook, which eventually led to talking the phone for 3 hours at a time, to me asking her out on a date.
She's a nurse practitioner, by the way. Which makes what I'm about to say to her a little more mind blowing. I asked her "Does it matter that I have a brain tumor?" "Not at all", she said. She explained we were all going to die someday, what matters is the experience we are having right now. With that out of the way, I fell in love with her.
She has been instrumental in my survival, and I am blessed to have her and my son!
 |
| Summer Watkins, April 17, 2010 |
 |
| (Gauze-headed picture of) Me and my wife at the Northwestern Medical Center, after my 2nd surgery. November, 2013 |
Friday, August 8, 2014
Recovery
When I first became aware, I was lying down on a bed. I thought about what just happened to me, and I decided must have gone fairly well. I tried to move my right arm, and *WHACK*! My face was in the way. I tried to right arm again, which was a heavier that usual, and settled it into a more comfortable position. At some point, I must have tried talking, and it was difficult as well. Maybe my surgery didn't go as I thought. I settled back and just wrote it off to surgery/anesthesia after effects, and into a fitful sleep.
They took be for a CT scan, to make sure there was no blood clotting issues, then I was wheeled to the ICU. I remember my dad being there, as well my uncle Chris and my cousin Paul. Sorry if I left some people out, but I remember those people being there. I tried to talk, to say that "I'm okay," but I was clearly not. Talking was futile. As they left - it had been a long day - I remember going back to sleep.
The next day, I got to sit up in a chair. They had put me on 200mg of Dilantin, which basically slows my brain down and makes me feel like poop, so I was getting to used to that. I tried talking, and I could get several words out - yes, no, and thanks. It took a lot of effort just getting these words out. My brain was functional, but I had Apraxia. According to Wikipedia, "Individuals with AOS have difficulty connecting speech messages from the brain to the mouth.[2] AOS is a loss of prior speech ability resulting from a brain injury such as a stroke or progressive illness."
Basically, I sounded retarded, or mentally handicapped. I was injured in my brain. What if I was like that for the rest of my life? The way nurses blew me off and didn't even tried to understand me, was a scary prospect indeed.
My parents got there, as well as my sister, and I was glad to see them. I seem to remember them cracking up at my speech problems. The fact that I just say curse words with little issues, but I had trouble getting conversation out at the time. This was my funny to them, because they realized I was still there, I just had problems with my speech.
Eventually, Dr. Prahbu came in, and said my tumor was Oligodendroglioma, Grade 2, which had a good prognosis (meaning "life expectancy"). They were able to get 60% of it. The other 40% could not be removed without damaging me further. My tumor also had the 1p and 19q deletions, which meant likely to be treatable with chemotherapy.
I was initially disappointed at that result, but lived with it. After all, "Close follow-up with regular MRI scans is recommended following the successful removal of low-grade oligodendrogliomas," which means that further treatment would be not necessary until I showed tumor progression on my MRI.
The need for therapy was a given, especially for my speech. 90% came back over time. Occupational and physical, I had deficits as well, mostly minor. All in all, one year later, I was feeling back to my normal self.
Thanks for reading the first part of my story. Any feedback would be welcome.
By the way, my last MRI scan came back stable! Woohoo!
They took be for a CT scan, to make sure there was no blood clotting issues, then I was wheeled to the ICU. I remember my dad being there, as well my uncle Chris and my cousin Paul. Sorry if I left some people out, but I remember those people being there. I tried to talk, to say that "I'm okay," but I was clearly not. Talking was futile. As they left - it had been a long day - I remember going back to sleep.
The next day, I got to sit up in a chair. They had put me on 200mg of Dilantin, which basically slows my brain down and makes me feel like poop, so I was getting to used to that. I tried talking, and I could get several words out - yes, no, and thanks. It took a lot of effort just getting these words out. My brain was functional, but I had Apraxia. According to Wikipedia, "Individuals with AOS have difficulty connecting speech messages from the brain to the mouth.[2] AOS is a loss of prior speech ability resulting from a brain injury such as a stroke or progressive illness."
Basically, I sounded retarded, or mentally handicapped. I was injured in my brain. What if I was like that for the rest of my life? The way nurses blew me off and didn't even tried to understand me, was a scary prospect indeed.
My parents got there, as well as my sister, and I was glad to see them. I seem to remember them cracking up at my speech problems. The fact that I just say curse words with little issues, but I had trouble getting conversation out at the time. This was my funny to them, because they realized I was still there, I just had problems with my speech.
Eventually, Dr. Prahbu came in, and said my tumor was Oligodendroglioma, Grade 2, which had a good prognosis (meaning "life expectancy"). They were able to get 60% of it. The other 40% could not be removed without damaging me further. My tumor also had the 1p and 19q deletions, which meant likely to be treatable with chemotherapy.
I was initially disappointed at that result, but lived with it. After all, "Close follow-up with regular MRI scans is recommended following the successful removal of low-grade oligodendrogliomas," which means that further treatment would be not necessary until I showed tumor progression on my MRI.
The need for therapy was a given, especially for my speech. 90% came back over time. Occupational and physical, I had deficits as well, mostly minor. All in all, one year later, I was feeling back to my normal self.
Thanks for reading the first part of my story. Any feedback would be welcome.
By the way, my last MRI scan came back stable! Woohoo!
Subscribe to:
Posts (Atom)