Saturday, June 16, 2012
Walk Ahead 2012
Hello,
We have decided to continue "Matt's Matter Matters" by once again participating in the UC Walk Ahead for a Brain Tumor Cure. We know many of you have already let us know you would like to join us and invite anyone who is interested in walking/running or simply making a donation. This event was very important to Matt and we feel the need to continue the fight in his memory. Please feel free to share this information with others. Here is the link to our team page:
http://registration.walkahead.org/walkahead/participantpage.asp?uid=5159&fundid=2395
Additional Information from Walk Ahead main page:
Race Info
Who: Join survivors, caregivers, family members, brain tumor specialists and other caring members of our community for the 3rd annual Walk Ahead for a Brain Tumor Cure.
What: A scenic, 5-kilometer walk and chip-timed run. Route is wheelchair-accessible and includes two water stations. The celebration following the walk/run will feature music and refreshments.
Where: Begin and end at Yeatman's Cove at Sawyer Point Park in downtown Cincinnati.
When: October 28, 2012. Run begins at 8:00 a.m. Walk begins at 8:45 a.m. Festivities to follow.
How much? Registration fees:
-Walker (13 years or older): $25
-Runner: $25
-Child (12 years or under): $5
Additional donations are also accepted.
Thank you for all your thoughts, prayers and support.
John & Terry Korfhagen Family
Tuesday, January 17, 2012
A Final Thank You from Matt's Family
We are the family of Matthew Korfhagen, the author of this blog. We are sorry to inform Matthew’s readers and supporters that Matthew passed away on January 12, 2012 leaving a deep void in all of our lives. On behalf of Matthew, we wish to thank everyone for supporting Matthew’s efforts by reading this blog and sharing with Matthew your love, support and good wishes.
We also wish to publicly thank all of Matthew’s medical providers. We are amazed that there are people willing to dedicate their lives and give part of themselves each day in the support of the victims of this vile and insidious disease. We feel privileged that all of you gave so much of yourselves to make Matthew’s life better through the last six years.
This is the eulogy read at Matthew’s funeral mass. There are many more stories that we invite you to share. We wish to share with you a few of our memories of our son and brother.
May he rest in peace.
Eulogy
Read by his brother Joe:
Our family wishes to thank all of you for your love, support and prayers over these last six years. While we are deeply saddened by Matthew’s death, we are here to celebrate his life. Here are some of the “appropriate” stories, because you know Matt didn’t always think and speak “appropriately,” about Matt that made him so special.
Matthew John Korfhagen was born on October 12, 1983 in Cincinnati, Ohio. Matthew’s name means “gift of God”.
Trying to describe anyone is difficult. With Matthew you use these terms: smart, funny, passionate, loyal, helpful, trusting and mischievous. In addition, Matt was in every sense of the word a true non-conformist, who believed that rules should not apply to him.
For example, from the age of two Matthew dressed himself. His favorite clothes in the summer time were two non-matching rubber boots (one blue, one brown), no socks, tighty-whities with no pants, a flowered shirt and oversized sunglasses with one or both lens missing. Occasionally, he would top this off with either a cowboy hat or fireman’s hat. Matt would put these clothes on and then proudly go out in the yard to play and ride his tricycle. Any attempt to modify this outfit would be met with a resounding NO.
When the temperature got particularly hot, say in the mid 90s, Matt would change. He would put on a long sleeve shirt and long pants and would tell you with sweat pouring off his face that he wasn’t hot.
The best example of Matthew living by his own rules was when Mom became pregnant when Matt was around three. On being informed that he would be getting a little brother or sister, Matt who had just begun his GI Joe years, looked at his parents and said: “I don’t care if it’s a boy or a girl because I’m going to call it Joe”. And so it happened that all my siblings were given biblical names… I was named after an action figure. Any similarity to a biblical name was purely coincidental.
When Matt was around four, my parents began noticing little things about Matt’s intelligence. For example, Matt has an older brother, David, who would have been in the third grade and an older sister, Laura, who would have been in the first grade. Both David and Laura were good at math and they loved demonstrating their math skills. My parents would quiz them on car rides or when they were doing homework. That made them happy until Matthew, who had never seen a math book or been in a math class, started answering the math questions before them. David now says it didn’t bother him because he appreciated having a calculator help him with his homework.
Then Matthew turned six and headed off to the first grade. At the first progress report from school, my parents received a note from the teacher which read: “Matthew is a joy in class. He always gets his work done so fast, that he has time to help me with the other students.” Shortly after that note and after testing confirmed Matthew’s advanced levels, Matt was advanced to the second grade.
Matthew’s helping others was a hallmark of his life. We have had many people tell us how Matthew was there to help them with their problems. When Matt was first diagnosed he took to emails to tell family members and friends not to worry for him, that while this disease was not what he wanted that it was now his life and that with God’s help he was going to fight it for as long as he could.
Later, as the disease progressed, Matt created a blog, which we have been told, served as an inspiration to many people struggling with their own health or other problems and Matt made friends through this blog throughout the United States.
In preparing for the funeral, we had to pick a gospel passage and we also picked a passage for memorial cards handed out at the funeral home. The passage we picked is from the gospel of Matthew and reads in part:
“Come to me, all of you who labor and are burdened and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart and you will find rest for yourselves.”
To us, this passage is the embodiment of everything Matthew stood for and how he lived his life.
Read by his sister Laura:
Of course, Matthew also had his mischievous side. When he was around five or six years old, Dad took us to shop for a birthday gift for Mom. Somehow we ended up in front of the video games at some store. Dad felt a tug on his shirt and looked down to see Matthew holding a video game named Jackal. Jackal was a war game involving tanks and explosions and other things of interest to a young boy but certainly not of any interest to Mom. Dad looked at Matthew and told him gently that today we were buying gifts for Mom’s birthday and Matt said: “But Dad, Mom told me she really, really wanted this game.” Being the dutiful husband, Dad bought the game wrapped it and gave it to Mom for her birthday. Mom opened the gift and stared at Dad with a look of bewilderment until Dad said: “Matt told me that you really, really wanted that game.”
In June of this year, Matt decided he wanted to start his Christmas shopping. He thought long and hard and decided that for Mom all of the kids would give her the identical book and that she would open six presents in a row each of which would be the same book. Of course the other kids quickly agreed and Mom got six cookbooks teaching her the basics of baking. This, for a Mother who has baked all of her life and has made too many wedding cakes in her life to even count.
In one of the many efforts to find a cure, Matthew agreed to try radiation treatment in Bloomington, Indiana. This treatment was brutal with many side effects. So to prepare, Matt went on-line and found a series of humorous t-shirts. Our favorite stated, “I’m just here to meet nurses.” Through the 33 radiation treatments he received, Matt wore his t-shirts faithfully.
When Matthew was in the hospital for a follow up to his fourth round of chemotherapy and to get results from his most recent MRI, the mood in the room was solemn because we were sure that the prognosis was grim. The doctor walked in the door and sat down across from Matthew with a look which confirmed that the news was very bad. Matthew looked at the doctor and before the doctor could speak, Matthew started cracking jokes. Matthew decided that Chuck Norris jokes were appropriate topics of discussion on this horrible day. But the jokes accomplished what Matthew wanted. The jokes changed the mood of the room, if only for a little while, and made it a little easier for the doctor to do his job.
We are convinced that Matthew is still speaking to us even after his death. Matthew passed away around 2:30 P.M. on the 12th. Shortly, after Matthew’s passing Dad looked out the hospital window to see that very large snowflakes had just begun falling. Dad said: “It’s snowing, there’s Matt.” Three other people have told us similar stories all without hearing Dad’s reaction to the snow. Without even knowing of Matt’s passage, a very dear family friend decided for the first time in her life to make a videotape of snowfall and send it to us, again not knowing that Matt had died. Finally, when we gathered to discuss funeral arrangements, Dad said: “We need to have a serious discussion” and at that precise moment, Matthew’s dog walked into the room chewing on a squeaky toy, at which we all laughed and said, “That’s Matt!”
The best way to end this story is with Matthew’s own words. You can find this in one of his early blogs. Matthew is speaking about the radiation treatment which he is about to begin and he states:
“I hope that I’m not just doing this in search of a cure. Yes it would be nice if it works and I continue to live a much longer life than previously expected, but I hope that people will treat this as a learning experience. I hope that everyone touched by my life will get something from me.
My favorite quote: “attitude is everything so pick a good one.” Please think about this when you start to worry about little things like cancer.”
Matthew embodied this quote, taking on the most difficult challenges with great strength and humor. And now Matthew, Gift of God, has returned to God, his spirit at peace, his life a beautiful gift to all of us who will carry him with us for the rest of our days.
In honor of Matt, we would also like to invite family and friends to share their own memories of Matt by posting them in the comments section below.
We also wish to publicly thank all of Matthew’s medical providers. We are amazed that there are people willing to dedicate their lives and give part of themselves each day in the support of the victims of this vile and insidious disease. We feel privileged that all of you gave so much of yourselves to make Matthew’s life better through the last six years.
This is the eulogy read at Matthew’s funeral mass. There are many more stories that we invite you to share. We wish to share with you a few of our memories of our son and brother.
May he rest in peace.
Eulogy
Read by his brother Joe:
Our family wishes to thank all of you for your love, support and prayers over these last six years. While we are deeply saddened by Matthew’s death, we are here to celebrate his life. Here are some of the “appropriate” stories, because you know Matt didn’t always think and speak “appropriately,” about Matt that made him so special.
Matthew John Korfhagen was born on October 12, 1983 in Cincinnati, Ohio. Matthew’s name means “gift of God”.
Trying to describe anyone is difficult. With Matthew you use these terms: smart, funny, passionate, loyal, helpful, trusting and mischievous. In addition, Matt was in every sense of the word a true non-conformist, who believed that rules should not apply to him.
For example, from the age of two Matthew dressed himself. His favorite clothes in the summer time were two non-matching rubber boots (one blue, one brown), no socks, tighty-whities with no pants, a flowered shirt and oversized sunglasses with one or both lens missing. Occasionally, he would top this off with either a cowboy hat or fireman’s hat. Matt would put these clothes on and then proudly go out in the yard to play and ride his tricycle. Any attempt to modify this outfit would be met with a resounding NO.
When the temperature got particularly hot, say in the mid 90s, Matt would change. He would put on a long sleeve shirt and long pants and would tell you with sweat pouring off his face that he wasn’t hot.
The best example of Matthew living by his own rules was when Mom became pregnant when Matt was around three. On being informed that he would be getting a little brother or sister, Matt who had just begun his GI Joe years, looked at his parents and said: “I don’t care if it’s a boy or a girl because I’m going to call it Joe”. And so it happened that all my siblings were given biblical names… I was named after an action figure. Any similarity to a biblical name was purely coincidental.
When Matt was around four, my parents began noticing little things about Matt’s intelligence. For example, Matt has an older brother, David, who would have been in the third grade and an older sister, Laura, who would have been in the first grade. Both David and Laura were good at math and they loved demonstrating their math skills. My parents would quiz them on car rides or when they were doing homework. That made them happy until Matthew, who had never seen a math book or been in a math class, started answering the math questions before them. David now says it didn’t bother him because he appreciated having a calculator help him with his homework.
Then Matthew turned six and headed off to the first grade. At the first progress report from school, my parents received a note from the teacher which read: “Matthew is a joy in class. He always gets his work done so fast, that he has time to help me with the other students.” Shortly after that note and after testing confirmed Matthew’s advanced levels, Matt was advanced to the second grade.
Matthew’s helping others was a hallmark of his life. We have had many people tell us how Matthew was there to help them with their problems. When Matt was first diagnosed he took to emails to tell family members and friends not to worry for him, that while this disease was not what he wanted that it was now his life and that with God’s help he was going to fight it for as long as he could.
Later, as the disease progressed, Matt created a blog, which we have been told, served as an inspiration to many people struggling with their own health or other problems and Matt made friends through this blog throughout the United States.
In preparing for the funeral, we had to pick a gospel passage and we also picked a passage for memorial cards handed out at the funeral home. The passage we picked is from the gospel of Matthew and reads in part:
“Come to me, all of you who labor and are burdened and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart and you will find rest for yourselves.”
To us, this passage is the embodiment of everything Matthew stood for and how he lived his life.
Read by his sister Laura:
Of course, Matthew also had his mischievous side. When he was around five or six years old, Dad took us to shop for a birthday gift for Mom. Somehow we ended up in front of the video games at some store. Dad felt a tug on his shirt and looked down to see Matthew holding a video game named Jackal. Jackal was a war game involving tanks and explosions and other things of interest to a young boy but certainly not of any interest to Mom. Dad looked at Matthew and told him gently that today we were buying gifts for Mom’s birthday and Matt said: “But Dad, Mom told me she really, really wanted this game.” Being the dutiful husband, Dad bought the game wrapped it and gave it to Mom for her birthday. Mom opened the gift and stared at Dad with a look of bewilderment until Dad said: “Matt told me that you really, really wanted that game.”
In June of this year, Matt decided he wanted to start his Christmas shopping. He thought long and hard and decided that for Mom all of the kids would give her the identical book and that she would open six presents in a row each of which would be the same book. Of course the other kids quickly agreed and Mom got six cookbooks teaching her the basics of baking. This, for a Mother who has baked all of her life and has made too many wedding cakes in her life to even count.
In one of the many efforts to find a cure, Matthew agreed to try radiation treatment in Bloomington, Indiana. This treatment was brutal with many side effects. So to prepare, Matt went on-line and found a series of humorous t-shirts. Our favorite stated, “I’m just here to meet nurses.” Through the 33 radiation treatments he received, Matt wore his t-shirts faithfully.
When Matthew was in the hospital for a follow up to his fourth round of chemotherapy and to get results from his most recent MRI, the mood in the room was solemn because we were sure that the prognosis was grim. The doctor walked in the door and sat down across from Matthew with a look which confirmed that the news was very bad. Matthew looked at the doctor and before the doctor could speak, Matthew started cracking jokes. Matthew decided that Chuck Norris jokes were appropriate topics of discussion on this horrible day. But the jokes accomplished what Matthew wanted. The jokes changed the mood of the room, if only for a little while, and made it a little easier for the doctor to do his job.
We are convinced that Matthew is still speaking to us even after his death. Matthew passed away around 2:30 P.M. on the 12th. Shortly, after Matthew’s passing Dad looked out the hospital window to see that very large snowflakes had just begun falling. Dad said: “It’s snowing, there’s Matt.” Three other people have told us similar stories all without hearing Dad’s reaction to the snow. Without even knowing of Matt’s passage, a very dear family friend decided for the first time in her life to make a videotape of snowfall and send it to us, again not knowing that Matt had died. Finally, when we gathered to discuss funeral arrangements, Dad said: “We need to have a serious discussion” and at that precise moment, Matthew’s dog walked into the room chewing on a squeaky toy, at which we all laughed and said, “That’s Matt!”
The best way to end this story is with Matthew’s own words. You can find this in one of his early blogs. Matthew is speaking about the radiation treatment which he is about to begin and he states:
“I hope that I’m not just doing this in search of a cure. Yes it would be nice if it works and I continue to live a much longer life than previously expected, but I hope that people will treat this as a learning experience. I hope that everyone touched by my life will get something from me.
My favorite quote: “attitude is everything so pick a good one.” Please think about this when you start to worry about little things like cancer.”
Matthew embodied this quote, taking on the most difficult challenges with great strength and humor. And now Matthew, Gift of God, has returned to God, his spirit at peace, his life a beautiful gift to all of us who will carry him with us for the rest of our days.
In honor of Matt, we would also like to invite family and friends to share their own memories of Matt by posting them in the comments section below.
Thursday, November 10, 2011
Update from Mom
Still not up for writing much... Mom wrote this (pretty accurate, with small modifications):
Hi,
This is to let you know that Matthew's latest MRI on October 31 was not very good. It appears the tumor is growing. Matt has begun a new, more aggressive course of chemotherapy. He is hanging in there and handling the situation pretty well[ish], although he is very tired and sleeps most of the time. We know you care and want to share your feelings with him, but are asking that you please not try to contact him (not even through email or voice mail). The situation is overwhelming enough for him and he does not want to talk about it at this time. He will let you know when he's ready to communicate.
Thank you for understanding and for all your thoughts and prayers.
My take:
Things have sucked since Oct. 1... I'm not really the same person I wish I was. I'm still going I guess... I've accepted this is part of being human. Tough road ahead of me... hopefully something fun next update
Hi,
This is to let you know that Matthew's latest MRI on October 31 was not very good. It appears the tumor is growing. Matt has begun a new, more aggressive course of chemotherapy. He is hanging in there and handling the situation pretty well[ish], although he is very tired and sleeps most of the time. We know you care and want to share your feelings with him, but are asking that you please not try to contact him (not even through email or voice mail). The situation is overwhelming enough for him and he does not want to talk about it at this time. He will let you know when he's ready to communicate.
Thank you for understanding and for all your thoughts and prayers.
My take:
Things have sucked since Oct. 1... I'm not really the same person I wish I was. I'm still going I guess... I've accepted this is part of being human. Tough road ahead of me... hopefully something fun next update
Saturday, September 17, 2011
Lacking Shame: The life of a medical guinea pig
If I don't make fun of it, then who's gonna? (This probably contains WAY T.M.I. for many readers, but if you're intrigued, then by all means read on - random boring "health" details to follow...)
One of the worst side effects of the "poison" (Avastin/Bevacizumab - which was supposed to be over with awhile back) I'm receiving is a nasty nasty rash involving my legs, hands, a few joints, and (ahem) certain regions of major blood flow... Let's call it "body jock itch", except where that normally occurs, it's about a billion times worse, itchier, more painful. Since exercise (walking) has played a key role in general maintenance of my mood/health/sleep/etc. Vaseline has essentially been my best friend, and while I was staring at a large tub of this wonderful de-frictionator, I started writing in my head (this is in no way sexual unless you want it to be) - also there are a few "inside jokes" in the following, possibly to be explained after:
Ode to Vaseline
Vaseline is a wonderful lube.
It's stored in a big tub or a little tube,
Reduces the friction between my legs
When I'm walking; the pain begs
For me to rub it down:
The rashy itchiness makes me frown.
But it makes me smile;
Without it, I couldn't walk a mile.
I love to walk,
And I love to talk.
Without this lube I'd be out of luck
And I'd be stuck
Walking all alone
Along the "tracks" near my home.
I can run off the tracks for an emergency
Because the urge to pee happens frequently;
And then the neighbors get mad at me.
But me peeing on a tree is all they see,
And consequently speak to me very angrily.
I just chuckle: "It was an emergency pee."
Too bad they don't know any better;
Maybe they think I'm a bed-wetter.
But of course I'm not...
But my bladder is clearly not self-taught.
When on my walks it gets distraught.
All thanks to Vaseline.
Completely anti-climactic, I know... but it creates some entertaining imagery especially for myself... my "bladder escapades" - (for example, the short story in the poem that I alluded to is completely true). Somebody getting mad at me for peeing in a tree actually happened - make for some amusing memories (in fact, I had three "rest breaks" on a two-mile walk tonight... I have the bladder of an 80 year old man with an enlarged prostate... probably similar to the guy who yelled at me for relieving myself in his yard... I suppose I can understand, but I hope he can laugh about it by now). Also, I've peed my pants while on the phone talking to my Oncologist (I'm committed to my healthcare, what can I say). Also, having gone through what I've had to has twisted my sense of humor and eliminated my sense of shame and discretion in sharing "personal" (what might typically be construed as embarrassing - a word I don't relate to well) information. The overly-stated cliche that "life is too short" no doubt applies to "taking [life] too seriously" and necessitates a healthy sense of humor. Therefore, if something unfortunate happens to me, I find a way to laugh with it or at it. This entire blog makes me wonder how trying to get myself back into school is going to go...
Also, here's a sincere thank you to one of my best friends and his family for sharing their beautiful North Carolina home with me during a short vacation... It couldn't have been more relaxing, and it was great company... I am very lucky and thankful to have you in my life, and I am always keeping you in my prayers.
BORING HEALTH STUFF:
1. MRI scheduled for Monday... I feel like it's going to be good... thanks in advance for the prayers and good-vibes
2. 3rd treatment of Bevacizumab next Thursday
3. My symptoms are gradually and gracefully improving with a combination of hard work, exercise, good rest, a positive/optimistic attitude, and presumably effects from this wonderfully side-effect-alicious drug killing off some necrosis (caused by radiation - no apologies necessary Dr. B. - I would never have gone for anything differently and it was absolutely worth a shot), and killing maybe a bit of tumor that survived the radiation... only way to know for sure is to cut it out - ugly ugly side-effects from surgery.
4. If my "nether regions" remain pain free, I will no doubt be participating in the Walk Ahead 2011 on Oct. 2 (see previous posts for details)... Well I will definitely be there regardless of how I feel and I look forward to seeing you there (if you join my team you'll get a cool "Matt's Matter Matters) t-shirt from my family and me - we're having about 50 made so I hope at least that many of y'all join us) :)
5. Not so boring, but I recently got approval to drive... which is actually beyond exciting.
I think I've covered it all... it's pretty late and I'm not really thinking straight (I'm a natural poet).
Take care everyone and wishing you all the very best!
One of the worst side effects of the "poison" (Avastin/Bevacizumab - which was supposed to be over with awhile back) I'm receiving is a nasty nasty rash involving my legs, hands, a few joints, and (ahem) certain regions of major blood flow... Let's call it "body jock itch", except where that normally occurs, it's about a billion times worse, itchier, more painful. Since exercise (walking) has played a key role in general maintenance of my mood/health/sleep/etc. Vaseline has essentially been my best friend, and while I was staring at a large tub of this wonderful de-frictionator, I started writing in my head (this is in no way sexual unless you want it to be) - also there are a few "inside jokes" in the following, possibly to be explained after:
Ode to Vaseline
Vaseline is a wonderful lube.
It's stored in a big tub or a little tube,
Reduces the friction between my legs
When I'm walking; the pain begs
For me to rub it down:
The rashy itchiness makes me frown.
But it makes me smile;
Without it, I couldn't walk a mile.
I love to walk,
And I love to talk.
Without this lube I'd be out of luck
And I'd be stuck
Walking all alone
Along the "tracks" near my home.
I can run off the tracks for an emergency
Because the urge to pee happens frequently;
And then the neighbors get mad at me.
But me peeing on a tree is all they see,
And consequently speak to me very angrily.
I just chuckle: "It was an emergency pee."
Too bad they don't know any better;
Maybe they think I'm a bed-wetter.
But of course I'm not...
But my bladder is clearly not self-taught.
When on my walks it gets distraught.
All thanks to Vaseline.
Completely anti-climactic, I know... but it creates some entertaining imagery especially for myself... my "bladder escapades" - (for example, the short story in the poem that I alluded to is completely true). Somebody getting mad at me for peeing in a tree actually happened - make for some amusing memories (in fact, I had three "rest breaks" on a two-mile walk tonight... I have the bladder of an 80 year old man with an enlarged prostate... probably similar to the guy who yelled at me for relieving myself in his yard... I suppose I can understand, but I hope he can laugh about it by now). Also, I've peed my pants while on the phone talking to my Oncologist (I'm committed to my healthcare, what can I say). Also, having gone through what I've had to has twisted my sense of humor and eliminated my sense of shame and discretion in sharing "personal" (what might typically be construed as embarrassing - a word I don't relate to well) information. The overly-stated cliche that "life is too short" no doubt applies to "taking [life] too seriously" and necessitates a healthy sense of humor. Therefore, if something unfortunate happens to me, I find a way to laugh with it or at it. This entire blog makes me wonder how trying to get myself back into school is going to go...
Also, here's a sincere thank you to one of my best friends and his family for sharing their beautiful North Carolina home with me during a short vacation... It couldn't have been more relaxing, and it was great company... I am very lucky and thankful to have you in my life, and I am always keeping you in my prayers.
BORING HEALTH STUFF:
1. MRI scheduled for Monday... I feel like it's going to be good... thanks in advance for the prayers and good-vibes
2. 3rd treatment of Bevacizumab next Thursday
3. My symptoms are gradually and gracefully improving with a combination of hard work, exercise, good rest, a positive/optimistic attitude, and presumably effects from this wonderfully side-effect-alicious drug killing off some necrosis (caused by radiation - no apologies necessary Dr. B. - I would never have gone for anything differently and it was absolutely worth a shot), and killing maybe a bit of tumor that survived the radiation... only way to know for sure is to cut it out - ugly ugly side-effects from surgery.
4. If my "nether regions" remain pain free, I will no doubt be participating in the Walk Ahead 2011 on Oct. 2 (see previous posts for details)... Well I will definitely be there regardless of how I feel and I look forward to seeing you there (if you join my team you'll get a cool "Matt's Matter Matters) t-shirt from my family and me - we're having about 50 made so I hope at least that many of y'all join us) :)
5. Not so boring, but I recently got approval to drive... which is actually beyond exciting.
I think I've covered it all... it's pretty late and I'm not really thinking straight (I'm a natural poet).
Take care everyone and wishing you all the very best!
Friday, September 2, 2011
Matt's Medical Madness (Update)
Hello all!
I spoke with a neurosurgeon today (the doctor that performed my original biopsy), and received what I perceive to be excellent news. He said that the current situation looks like the result of radiation necrosis (aka damage from my most recent treatments a few months back), and that I'm receiving appropriate treatment (Bevacizumab, which I had my second dose yesterday). He feels confident that there is no need to do any further cutting (brain removal, etc.) and that based on a short neurological exam and seeing me in person that I am doing well. The only down-side is that I have to deal with the unfortunate side-effects of the "poison", including a pretty nasty rash along with waking up at night with extremely painful muscle cramps ("no pain, no gain" - I "hate" cliches) in my left side muscles (which is also a good sign that the drug is working). I am working on reducing the amount of meds that I have been taking every day (call it about 37-40 pills), which is pretty sweet. I think my liver and kidneys are looking forward to that. I am also busting my butt doing O.T. exercises as much as possible and seeing a Certified Hand Therapist (CHT) a couple times a week, as well as walking as much as I can (exercise is excellent for patients undergoing chemo, and it's great for everybody anyway). My next MRI is scheduled for a couple weeks from now and I am due to visit my Neurologist next week, which I am excited about... the docs in Bloomington are fantastic (not that the rest of mine aren't... I think we have a mutual "love" for each other... we always keep humor in medicine and my personality is perfect for that - I like to brag about that). Another potentially good piece of news is that, depending on approval of the Neurologist (which could make him my favorite person ever, except for my parents who made me - eew), I could get my driver's license back since there is allegedly no Ohio law pertinent to seizures and driving... just obnoxious paperwork and perhaps another driving exam. Anyhow, I am extremely happy with how things are going and as always I'm looking forward to the Brain Tumor Walk on October 2nd (if you have anything to spare, please make a donation, join my team, or continue to provide my family and myself with your tremendous amount of love and support).
Keep the faith! - sigh, another cliche.
I spoke with a neurosurgeon today (the doctor that performed my original biopsy), and received what I perceive to be excellent news. He said that the current situation looks like the result of radiation necrosis (aka damage from my most recent treatments a few months back), and that I'm receiving appropriate treatment (Bevacizumab, which I had my second dose yesterday). He feels confident that there is no need to do any further cutting (brain removal, etc.) and that based on a short neurological exam and seeing me in person that I am doing well. The only down-side is that I have to deal with the unfortunate side-effects of the "poison", including a pretty nasty rash along with waking up at night with extremely painful muscle cramps ("no pain, no gain" - I "hate" cliches) in my left side muscles (which is also a good sign that the drug is working). I am working on reducing the amount of meds that I have been taking every day (call it about 37-40 pills), which is pretty sweet. I think my liver and kidneys are looking forward to that. I am also busting my butt doing O.T. exercises as much as possible and seeing a Certified Hand Therapist (CHT) a couple times a week, as well as walking as much as I can (exercise is excellent for patients undergoing chemo, and it's great for everybody anyway). My next MRI is scheduled for a couple weeks from now and I am due to visit my Neurologist next week, which I am excited about... the docs in Bloomington are fantastic (not that the rest of mine aren't... I think we have a mutual "love" for each other... we always keep humor in medicine and my personality is perfect for that - I like to brag about that). Another potentially good piece of news is that, depending on approval of the Neurologist (which could make him my favorite person ever, except for my parents who made me - eew), I could get my driver's license back since there is allegedly no Ohio law pertinent to seizures and driving... just obnoxious paperwork and perhaps another driving exam. Anyhow, I am extremely happy with how things are going and as always I'm looking forward to the Brain Tumor Walk on October 2nd (if you have anything to spare, please make a donation, join my team, or continue to provide my family and myself with your tremendous amount of love and support).
Keep the faith! - sigh, another cliche.
Tuesday, August 23, 2011
July-August Update...
I’ll start with something I’m hoping most people will read so I don’t have to constantly repeat myself… So here’s my current health situation:
I’m kind of stuck in limbo… recently I’ve had a few “ugly” MRI’s, meaning that the doctors aren’t quite sure what’s going on inside my noggin’… It could be necrosis due to radiation damage, or tumor growth, or swelling/edema. Instead of using MRI’s, I will eventually have a PET scan which should hopefully help determine what’s going on. We’ve experimented with a variety of treatments: steroids, 66 hyperbaric oxygen (HBO) treatments (as of today), possibly up to 90 (which is extremely rare), more Avastin (Bevecizumab)/“poison”/chemo/monoclonal-antibody, which is rather unpleasant I must say due to its nasty side-effects, and the possibility of surgery to remove all the questionable “damaged” parts of my brain, which would most likely leave me hemiplegic (half paralyzed… on my left side since a lot of my right brain would be cut out). Again, who knows… I’m kind of just along for the ride, somewhat reluctantly going through the treatments my doctors suggest because I believe in them. I’m still doing occupational therapy as much as my fatigued body will put up with (not very much or very often), just in case surgery gets ruled out, and even in case surgery happens so that I’ll still be strong enough to help recover. I’m bouncing through a whole heap of meds, constantly trying to find a good combination to help me feel better. I’ve recently started on a BIPAP (a machine that helps with sleep disorders, though I’m not convinced it’s helping too much)… I get to wear a mask that makes me look kind of like a fireman, which I would have loved when I was five, but is really just kind of annoying. I guess that basically summarizes it.
And now for something a bit more “unique”, the part of writing this blog that I enjoy the most:
I met some of my best online friends through an internet game. I played under the alias BaldNScarred, which is an obvious physical description, but indeed somewhat metaphorical, which you might recognize from previous posts. The other night I woke up thinking about this name and how it is such a good fit for me; I wrote this poem about it (will finish it as I sit here):
My name from the truth isn’t too far.
I am bald; I am scarred.
Brain cancer has made me so,
But bitterness or anger doesn’t change it though.
I do not live in fear,
But instead I’m a broken soul.
When love, reality draws near,
I withdraw; hide in a hole.
“Scarred” is often mistaken for “scared”,
But unfortunately it is a bit true.
Metaphors, memories, life’s moments,
Often life’s opponents.
My body, wounded and weak,
Crumbling slowly; healing I seek.
Patience, prudence unpeered
Strong, stubborn soul riding stressed,
Unsteered.
Stuck in the unknown,
Not sure where it’s going
Blindly following what I’ve been shown
A painful process, predictably annoying.
BaldNScarred: bald is beautifully shiny;
Scarred causes me to be whiny.
But I try not to complain too much,
For I’ve been given a gift.
This gift is not sought as such,
But it creates a rift
Between you and me;
And I can see;
I’d like to show you what I’ve learned;
I’d like to lead you to what you’ve yearned.
Can you tell me what’s missing in your life?
Is it worth going through the strife?
Think about your troubles, your sorrows;
Will they still be there tomorrow?
I know mine will;
They’ve given me a skill
And I often take it in stride,
With this strategy, I confide
In you that often through the pain,
In spite of the feeling that nothing can be gained,
Your struggles make you strong;
Too often, giving up is a poorly, mistaken song.
Accept who you are;
I sit here smoking a cigar.
I’ve fought through cancer,
But I do what I enjoy.
Life is my answer,
Dare I try to destroy?
I’m a soul in a borrowed body;
What am I to do with it?
Don’t take this as a decision, shoddy,
I use it to show off whimsy and wit.
I take my bald; I take my scarred, sometimes scared
With time, patience, I will be spared.
Live and love living.
Give and love giving.
Believe.
You’ll feel relieved.
I guess a way to summarize what I’m saying in this poem is I accept who I am, and I accept the rough road I have to ride on. Unfair as it may seem, to me it’s nothing I would change (except for getting through all this crap and showing that it can be done). I believe the choices you make and the results of those choices have lessons to be learned, but I question whether or not they are worth going through. I hope that you don’t have to go through what I’m dealing with, but if you do, it is definitely worth seeing where it takes you. Indeed, life is difficult, but memories from the way you live are what you take with you in the afterlife; being a good person, creating good memories, fighting and surviving, yet enjoying every moment, somehow…
I’m sitting here smoking a cigar and having a drink with one of my best friends in the world; a person I’d never take for granted. Knowing how much we’ve “been there” for each other is something worth carrying with me. Many people question how, after cancer, I can be so wreckless that I continue to “abuse” my body, but I’m doing something I undoubtedly enjoy.
I’m kind of stuck in limbo… recently I’ve had a few “ugly” MRI’s, meaning that the doctors aren’t quite sure what’s going on inside my noggin’… It could be necrosis due to radiation damage, or tumor growth, or swelling/edema. Instead of using MRI’s, I will eventually have a PET scan which should hopefully help determine what’s going on. We’ve experimented with a variety of treatments: steroids, 66 hyperbaric oxygen (HBO) treatments (as of today), possibly up to 90 (which is extremely rare), more Avastin (Bevecizumab)/“poison”/chemo/monoclonal-antibody, which is rather unpleasant I must say due to its nasty side-effects, and the possibility of surgery to remove all the questionable “damaged” parts of my brain, which would most likely leave me hemiplegic (half paralyzed… on my left side since a lot of my right brain would be cut out). Again, who knows… I’m kind of just along for the ride, somewhat reluctantly going through the treatments my doctors suggest because I believe in them. I’m still doing occupational therapy as much as my fatigued body will put up with (not very much or very often), just in case surgery gets ruled out, and even in case surgery happens so that I’ll still be strong enough to help recover. I’m bouncing through a whole heap of meds, constantly trying to find a good combination to help me feel better. I’ve recently started on a BIPAP (a machine that helps with sleep disorders, though I’m not convinced it’s helping too much)… I get to wear a mask that makes me look kind of like a fireman, which I would have loved when I was five, but is really just kind of annoying. I guess that basically summarizes it.
And now for something a bit more “unique”, the part of writing this blog that I enjoy the most:
I met some of my best online friends through an internet game. I played under the alias BaldNScarred, which is an obvious physical description, but indeed somewhat metaphorical, which you might recognize from previous posts. The other night I woke up thinking about this name and how it is such a good fit for me; I wrote this poem about it (will finish it as I sit here):
My name from the truth isn’t too far.
I am bald; I am scarred.
Brain cancer has made me so,
But bitterness or anger doesn’t change it though.
I do not live in fear,
But instead I’m a broken soul.
When love, reality draws near,
I withdraw; hide in a hole.
“Scarred” is often mistaken for “scared”,
But unfortunately it is a bit true.
Metaphors, memories, life’s moments,
Often life’s opponents.
My body, wounded and weak,
Crumbling slowly; healing I seek.
Patience, prudence unpeered
Strong, stubborn soul riding stressed,
Unsteered.
Stuck in the unknown,
Not sure where it’s going
Blindly following what I’ve been shown
A painful process, predictably annoying.
BaldNScarred: bald is beautifully shiny;
Scarred causes me to be whiny.
But I try not to complain too much,
For I’ve been given a gift.
This gift is not sought as such,
But it creates a rift
Between you and me;
And I can see;
I’d like to show you what I’ve learned;
I’d like to lead you to what you’ve yearned.
Can you tell me what’s missing in your life?
Is it worth going through the strife?
Think about your troubles, your sorrows;
Will they still be there tomorrow?
I know mine will;
They’ve given me a skill
And I often take it in stride,
With this strategy, I confide
In you that often through the pain,
In spite of the feeling that nothing can be gained,
Your struggles make you strong;
Too often, giving up is a poorly, mistaken song.
Accept who you are;
I sit here smoking a cigar.
I’ve fought through cancer,
But I do what I enjoy.
Life is my answer,
Dare I try to destroy?
I’m a soul in a borrowed body;
What am I to do with it?
Don’t take this as a decision, shoddy,
I use it to show off whimsy and wit.
I take my bald; I take my scarred, sometimes scared
With time, patience, I will be spared.
Live and love living.
Give and love giving.
Believe.
You’ll feel relieved.
I guess a way to summarize what I’m saying in this poem is I accept who I am, and I accept the rough road I have to ride on. Unfair as it may seem, to me it’s nothing I would change (except for getting through all this crap and showing that it can be done). I believe the choices you make and the results of those choices have lessons to be learned, but I question whether or not they are worth going through. I hope that you don’t have to go through what I’m dealing with, but if you do, it is definitely worth seeing where it takes you. Indeed, life is difficult, but memories from the way you live are what you take with you in the afterlife; being a good person, creating good memories, fighting and surviving, yet enjoying every moment, somehow…
I’m sitting here smoking a cigar and having a drink with one of my best friends in the world; a person I’d never take for granted. Knowing how much we’ve “been there” for each other is something worth carrying with me. Many people question how, after cancer, I can be so wreckless that I continue to “abuse” my body, but I’m doing something I undoubtedly enjoy.
Monday, August 22, 2011
Well I typed this up a few days ago... more to come soon, barring further distractions/fatigue...
First of all, the 2011 Walk Ahead for a Brain Tumor Cure is official! One very important thing to keep in mind is that Brain Cancer Research is poorly funded due to the research/drug companies' lack of potential profit due to the rarity of brain cancer (I think it's in the small 1-3% of cancer types). Specific details about the Brain Tumor 5k are on the following link:
http://www.walkahead.org/5k-walk-run
If you would like to join my team (Matt's Matter Matters) to participate:
http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1
If you would like to donate to the cause without joining:
http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1
Thank you again to my amazing Uncle Don and new Aunt Debbie for requesting donations in lieu of Wedding gifts... Congratulations! You are both amazing and love you both!
http://www.walkahead.org/5k-walk-run
If you would like to join my team (Matt's Matter Matters) to participate:
http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1
If you would like to donate to the cause without joining:
http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1
Thank you again to my amazing Uncle Don and new Aunt Debbie for requesting donations in lieu of Wedding gifts... Congratulations! You are both amazing and love you both!
Subscribe to:
Posts (Atom)