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.
Friday, September 2, 2011
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!
Saturday, July 16, 2011
Excerpt from 90 Minutes in Heaven, by Don Piper, a must read in my opinion
"Despite my own perceptions, friends and church members say they received encouragement by watching me as I progressed from a totally helpless state and gradually moved toward a fairly normal lifestyle. A number of individuals have said to me in the midst of their own difficult times "If you could go through all you endured, I can go through this."
"I'm glad they've been heartened by my example, but I've had a great deal of difficulty accepting myself as a source of inspiration and courage. I don't know how to cope with their admiration and praise, because I didn't do anything. I wanted to die. How uplifting can that be?
"When people tell me how inspiring I've been, I don't argue with them, of course, but I remember only too well the time David Gentiles told me that he and others would pray me back to health. I lived because others wouldn't let me die. Those praying friends are the ones who deserve the admiration.
"Most of the time when people have that if-you-can-do-it attitude, I nod, acknowledge what they're saying, and add, "I'm just doing the best I can." And really that's all I did during the worst days. Sometimes "the best I can" was nothing but to endure."
I can relate to Mr. Piper through most of this excerpt and more or less throughout a good majority of this book (though I haven't yet finished it, I found this section to be particularly accurate. I'm just doing what I have to. I'm not quite sure what makes me an inspiration. I suppose it may be that I handle it quietly and with humility (I'm not sure that's really the word I'm looking for...). However, I simply am thankful for all the prayers and support and for the amazing medical staff that God has sent to me, no matter what the end result may be. I suppose I've accepted that at some point I will no doubt die, but I will continue to do everything I'm doing and to accept the help from others until the time that I'm no longer needed. For me, the inspiration is you all and by no means myself. But no doubt that is a matter of perspective from where I'm sitting vs. where you are. All I can suggest is to do what you have to, accept that we all have our "burdens", our "crosses to carry", and to endure and be thankful for what we've been given. And I am absolutely thankful for all of you, my inspirations.
"I'm glad they've been heartened by my example, but I've had a great deal of difficulty accepting myself as a source of inspiration and courage. I don't know how to cope with their admiration and praise, because I didn't do anything. I wanted to die. How uplifting can that be?
"When people tell me how inspiring I've been, I don't argue with them, of course, but I remember only too well the time David Gentiles told me that he and others would pray me back to health. I lived because others wouldn't let me die. Those praying friends are the ones who deserve the admiration.
"Most of the time when people have that if-you-can-do-it attitude, I nod, acknowledge what they're saying, and add, "I'm just doing the best I can." And really that's all I did during the worst days. Sometimes "the best I can" was nothing but to endure."
I can relate to Mr. Piper through most of this excerpt and more or less throughout a good majority of this book (though I haven't yet finished it, I found this section to be particularly accurate. I'm just doing what I have to. I'm not quite sure what makes me an inspiration. I suppose it may be that I handle it quietly and with humility (I'm not sure that's really the word I'm looking for...). However, I simply am thankful for all the prayers and support and for the amazing medical staff that God has sent to me, no matter what the end result may be. I suppose I've accepted that at some point I will no doubt die, but I will continue to do everything I'm doing and to accept the help from others until the time that I'm no longer needed. For me, the inspiration is you all and by no means myself. But no doubt that is a matter of perspective from where I'm sitting vs. where you are. All I can suggest is to do what you have to, accept that we all have our "burdens", our "crosses to carry", and to endure and be thankful for what we've been given. And I am absolutely thankful for all of you, my inspirations.
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Saturday, July 2, 2011
Update from Doc Post-MRI
On Wednesday, there was a conference held by a group of Physicians to discuss my case (among other patients' cases as well I'd assume... I'm not that self-centered as much as I try to be). With his permission, and for lack of a better way to explain the results (though I will try to elaborate), I am posting the email I received from my Oncologist last night:
Hi Matt,
I have pasted in results below, and some representative pics.
Basically, the main area of concern (oval area of new enhancement) appears stable. There are two new areas of linear enhancement without obvious tissue destruction. This may represent just a change in the blood brain barrier rather than significant tissue injury. Pictures 1 and 2 are two ways of looking at same thing. This would qualify as a radiation effect rather than significant radiation damage. nobody at today's conference felt there was any evidence of tumor progression. The FLAIR signal abnormality [generally the white stuff you see in the pictures] that had defined the tumor looks very stable.
So, bottom line, no further injury to brain, and hopefully combination of Trental + steroids + HBO + time is preventing further damage. There was no significant edema, and may be reasonable to talk about slowly dialing down steroids.
........................
Basically, this is neutral news at worst and fantastic news at best. The "area of concern" has not made any significant changes and I am improving symptomatically for the most part, which are both excellent. As I continue to do my daily OT exercises and morning trots with my mom and/or Gambit (my dog if you didn't know his name), everything strength-wise is getting better and I am gaining more coordination. Overall, I'm doing very well as expected physically. It's still a bit of a mental struggle as I'm trying to diet a bit to fight the steroid weight gain (everything tastes amazing unfortunately and my appetite is, to say the least, relentless), and it's obviously a battle of patience as well. I'm working on getting some new pictures up so that you can get a look at the HBO chamber, among a couple others. Life is treating me well. Again, I want to extend a warm congratulations to a few of my good friends and their families for recent excellent news of beating their cancers (couple prostate surgeries and breast cancer with no surgery). I will be visiting my Radiation Oncologist and Neurologist in about a week, so perhaps I will receive more news then. 34 HBO treatments down! Go me!
I know I recently removed a bunch of people from my facebook account, which consequently resulted in their loss to access when I post an update (I know for certain there were a few of you... again I had to do that for personal reasons). Please (anybody who has read this and/or stumbled upon it), send your email address to thecancerousot@gmail.com and I'll be sure to get you on my mailing list for when I send out updates! This is also the email address to send any relevant questions, which I will then share with the blog.
Again, keep in mind that the second annual Walk Ahead for a Brain Tumor Cure will be on Oct. 2. It is a 5k which you can walk/run/wheelchair and promises to be an enjoyable experience. I plan to make Matt's Matter Matters T-shirts again this year, so let me know if you are interested in having one... I'll assume anyone who joins my team once I can get it set up (they aren't ready for me yet) wants a shirt (I'll need sizes of course).
If you wish to make an early donation to the team, checks can be mailed to the following:
The Brain Tumor Cancer Fund in honor of Matt Korfhagen at Walk Ahead BTC Fund
c/o UC Neuroscience Institute
P.O. Box 670570
Cincinnati, OH 45267-0570
(reference Matt's Matter Matters in the memo line of your check)
OR
If you'd like once I've got my team set up you may donate then.
Also, I am very grateful for my Uncle and his future wife (my future aunt of course) for requesting that donations be sent to this cause in lieu of receiving wedding gifts, as well as to raise funds for Alzheimer's (there is a 5k for that on Oct. 1 if you prefer, or would be so kind as to donate to both causes. The Alzheimer's instructions are below:
The Alzheimer's Association in honor of Ruth Lehrter at http://www.alz.org/cincinnati
OR
The Alzheimer's Association
Greater Cincinnati Chapter
644 Linn Street, Suite 1026
Cincinnati, OH 45203
Any donations to either of those causes would be very graciously appreciated and I am so thankful for all the support you have all provided to my family and myself. You are amazing.
Hi Matt,
I have pasted in results below, and some representative pics.
Basically, the main area of concern (oval area of new enhancement) appears stable. There are two new areas of linear enhancement without obvious tissue destruction. This may represent just a change in the blood brain barrier rather than significant tissue injury. Pictures 1 and 2 are two ways of looking at same thing. This would qualify as a radiation effect rather than significant radiation damage. nobody at today's conference felt there was any evidence of tumor progression. The FLAIR signal abnormality [generally the white stuff you see in the pictures] that had defined the tumor looks very stable.
So, bottom line, no further injury to brain, and hopefully combination of Trental + steroids + HBO + time is preventing further damage. There was no significant edema, and may be reasonable to talk about slowly dialing down steroids.
........................
Basically, this is neutral news at worst and fantastic news at best. The "area of concern" has not made any significant changes and I am improving symptomatically for the most part, which are both excellent. As I continue to do my daily OT exercises and morning trots with my mom and/or Gambit (my dog if you didn't know his name), everything strength-wise is getting better and I am gaining more coordination. Overall, I'm doing very well as expected physically. It's still a bit of a mental struggle as I'm trying to diet a bit to fight the steroid weight gain (everything tastes amazing unfortunately and my appetite is, to say the least, relentless), and it's obviously a battle of patience as well. I'm working on getting some new pictures up so that you can get a look at the HBO chamber, among a couple others. Life is treating me well. Again, I want to extend a warm congratulations to a few of my good friends and their families for recent excellent news of beating their cancers (couple prostate surgeries and breast cancer with no surgery). I will be visiting my Radiation Oncologist and Neurologist in about a week, so perhaps I will receive more news then. 34 HBO treatments down! Go me!
I know I recently removed a bunch of people from my facebook account, which consequently resulted in their loss to access when I post an update (I know for certain there were a few of you... again I had to do that for personal reasons). Please (anybody who has read this and/or stumbled upon it), send your email address to thecancerousot@gmail.com and I'll be sure to get you on my mailing list for when I send out updates! This is also the email address to send any relevant questions, which I will then share with the blog.
Again, keep in mind that the second annual Walk Ahead for a Brain Tumor Cure will be on Oct. 2. It is a 5k which you can walk/run/wheelchair and promises to be an enjoyable experience. I plan to make Matt's Matter Matters T-shirts again this year, so let me know if you are interested in having one... I'll assume anyone who joins my team once I can get it set up (they aren't ready for me yet) wants a shirt (I'll need sizes of course).
If you wish to make an early donation to the team, checks can be mailed to the following:
The Brain Tumor Cancer Fund in honor of Matt Korfhagen at Walk Ahead BTC Fund
c/o UC Neuroscience Institute
P.O. Box 670570
Cincinnati, OH 45267-0570
(reference Matt's Matter Matters in the memo line of your check)
OR
If you'd like once I've got my team set up you may donate then.
Also, I am very grateful for my Uncle and his future wife (my future aunt of course) for requesting that donations be sent to this cause in lieu of receiving wedding gifts, as well as to raise funds for Alzheimer's (there is a 5k for that on Oct. 1 if you prefer, or would be so kind as to donate to both causes. The Alzheimer's instructions are below:
The Alzheimer's Association in honor of Ruth Lehrter at http://www.alz.org/cincinnati
OR
The Alzheimer's Association
Greater Cincinnati Chapter
644 Linn Street, Suite 1026
Cincinnati, OH 45203
Any donations to either of those causes would be very graciously appreciated and I am so thankful for all the support you have all provided to my family and myself. You are amazing.
Wednesday, June 15, 2011
Quick Checklist-Style Update and a Cool Poem
Hey all... I'm extremely exhausted, but I figured I'd throw something together before bed... Thanks for all your patience as these updates have become less frequent (and this one significantly less detailed. As you know, I must be patient with the healing process, and therefore I require you to be patient with me. However, here's the short version of what's going on, followed by a poem I scrawled together back in high school while on a trip to the Monastery at Gethsemane in Kentucky. It got published in a book called "In All Things - Everyday Prayers of Jesuit High School Students", edited by my former Religion teachers Michael J. Daley and Lee P. Yeazell. Anyway, here's the checklist:
1. Hyperbaric (HBO) treatments are still going (treatment 23 of 60, possibly as many as 90, is tomorrow). I will find out how effective HBO has been after an MRI on the 28th of June. It basically involves me lying in a glass tube sucking in ridiculous amounts of Oxygen while I watch a movie or listen to music. I don't really feel anything besides occasionally bored.
2. I recentlky was diagnosed with mild sleep apnea so now I look like a fireman (thanks, mom) when I'm sleeping because I have to use a CPAP (continuous positive airway pressure) machine to help keep my airway open while I sleep... yay for more oxygen!
3. One of my best friends (who I met online and I'm going to visit this weekend) just found out Monday that she is officially breast cancer free after a pretty tough fight... congratulations Tara, I'm so proud of you for winning the fight and doing it your way... and as always thank you for always being there for me to talk me through my rough days.
4. Well, I'm drawing a blank on a fourth (stupid brain damage)... so here's the poem, which I hope you enjoy (I think it describes well my feelings about the power of prayer... it was a very powerful experience):
At Gethsemani Abbey's Door
I entered the church
More or less a normal church
The monks faced each other
A gate separated us
And then they sang...
Their voices resonating
In the presence of God
Praising Him beyond anything
I had ever experienced
And then they bowed before His altar...
Their hands drawn to their feet
Humility, vulnerability
Announcing subservience
Love...
"Praise to the Father, the Son
And the Holy Spirit
Both now and forever
The God who is
Who was
And who is to come
At the end of the ages."
Oh yeah! a 5th: October 2nd is the second annual Walk Ahead for a Brain Tumor Cure, and thus the return of Matt's Matter Matters! I'll let everyone know when I get a team started up (I don't think they're ready yet).
Anyhow that's it for now!
Wishing you all the very best!
1. Hyperbaric (HBO) treatments are still going (treatment 23 of 60, possibly as many as 90, is tomorrow). I will find out how effective HBO has been after an MRI on the 28th of June. It basically involves me lying in a glass tube sucking in ridiculous amounts of Oxygen while I watch a movie or listen to music. I don't really feel anything besides occasionally bored.
2. I recentlky was diagnosed with mild sleep apnea so now I look like a fireman (thanks, mom) when I'm sleeping because I have to use a CPAP (continuous positive airway pressure) machine to help keep my airway open while I sleep... yay for more oxygen!
3. One of my best friends (who I met online and I'm going to visit this weekend) just found out Monday that she is officially breast cancer free after a pretty tough fight... congratulations Tara, I'm so proud of you for winning the fight and doing it your way... and as always thank you for always being there for me to talk me through my rough days.
4. Well, I'm drawing a blank on a fourth (stupid brain damage)... so here's the poem, which I hope you enjoy (I think it describes well my feelings about the power of prayer... it was a very powerful experience):
At Gethsemani Abbey's Door
I entered the church
More or less a normal church
The monks faced each other
A gate separated us
And then they sang...
Their voices resonating
In the presence of God
Praising Him beyond anything
I had ever experienced
And then they bowed before His altar...
Their hands drawn to their feet
Humility, vulnerability
Announcing subservience
Love...
"Praise to the Father, the Son
And the Holy Spirit
Both now and forever
The God who is
Who was
And who is to come
At the end of the ages."
Oh yeah! a 5th: October 2nd is the second annual Walk Ahead for a Brain Tumor Cure, and thus the return of Matt's Matter Matters! I'll let everyone know when I get a team started up (I don't think they're ready yet).
Anyhow that's it for now!
Wishing you all the very best!
Saturday, May 14, 2011
It's Been Awhile...
Hey all!
I haven't had much to write about lately (and I guess looking at my previous post I never even edited it), with not feeling well and being very tired pretty constantly, I've been stumbling through a lack of motivation, but I figured since I'm not doing much on a Saturday night (which is normal lately), I'd go ahead and scribble something up.
To update the previous post, I continue treating the "area of concern" (which the docs are pretty certain is indeed necrosis - a good thing and I'll explain why shortly) with Trental and a Vitamin E supplement (which didn't seem to help, but makes sense to keep trying since it's not giving me any side-effects); I also recently began a low-dose regiment of steroids (bleh), which as usual are wreaking havoc on me with regards to side-effects (more manageable than previous higher doses). Moreover, on Monday I will finally begin a 12 week, M-F per week, hyperbaric chamber oxygen therapy treatment at St. Elizabeth's Hospital in Covington, KY (60 total "dives" as they are called because the atmospheric pressure is increased in the chamber akin to scuba diving - I guess). I personally ruled out Avastin as an option for treating this because (as some of you know) gave me a rather (ahem) uncomfortable side-effect (for those of you who don't know what it was are probably better off). Again, surgery is still pretty far off, but I'm not sure which I would prefer between that and Avastin (if that tells you anything about what that drug ended up doing to me).
Anyway, that's how we're going about treating this butthead (I didn't even realize that could be a pun until I typed it). Necrosis makes more sense than tumor activity simply because of how rapidly the area grew over a month. My tumor has never (to our knowledge) grown that quickly or been that "active", and especially since it was definitely hit with a heavy dose of radiation, it's probably just dying tissue (yay for still having the brain damage excuse!).
During the past few months, I've bounced back and forth seeing an occupational therapist without promising results (I started off poorly, then improved drastically, then collapsed to worse than how I started... all probably due to a splint I've been wearing to stretch out my tendons to help break up some muscular tone in my hand, not to mention my lack of exercising at home due to all the other crap I'm fighting through), and will probably be seeing a certified hand therapist (CHT) while I endure the good times in Covington, KY in a glass tube filled with highly pressurized oxygen force feeding my tissues with goodies - not at the same time... I also recently went to a sleep clinic ("results" Tuesday-ish) to find out what's going on in my sleep, which could ultimately help fix my seizure issues (but probably by using a CPAP - continuous positive airway pressure - machine, which is miserably uncomfortable - I've had one in the past and couldn't tolerate it, but apparently they are more comfortable now). I think I might have mastered the art of adding tangential thoughts within sentences (I feel dizzy just writing that last one, so I hope it makes sense - I'm not re-reading this). I have also been able to get out and walk for short durations, which is helping to strengthen my leg and keep me fit(ish), but again, some days I just don't get off the couch. I've gotten people pretty upset with me for being completely candid about how I'm feeling and/or how I make fun of myself... too bad. I also have enjoyed and benefitted from several massages (I don't think I can go back to not having them). That was a boring/dull ending to a paragraph.
Here's a question to address from one of my OT friends in Pitt:
"Are you experiencing any changes? Are you still using the CIMT or is that on the back burner right now? Also, maybe I should already know this, but is it your primary motor cortex that's affected? Any sensory or anything? I'm totally into neuro right now -- kinda what I'd like to get into one day, when I'm a grown up OT -- so sorry for all the questions."
The changes are unfortunately mostly that I'm getting physically weaker due to the damage from the radiation (though once I get the energy to work it, I'm certain I'll be able to recover to at least 85-90% of "normal" - yes CIMT, among other things besides the dorsal wrist splint, is on the backburner for now until I start back up with the CHT)... The surgery from 2 years ago removed a majority of my sensory cortex, but the radiation hit it all, so there are indeed issues in the motor cortex as well. It also affected my pituitary gland, causing a variety of hormonal issues (not like PMS hormonal, though the roids do that sometimes, but more like I need various drug supplements that the pituitary now struggles to produce).
Whew! I think that covers everything since the end of radiation! I need to write a bit more often I think. I'll try to put some MRI pictures up so you can see the "angry spot" and the other goop.
Also, check this out: my friend is trekking from Fountain Square in Cincinnati to Los Angeles to raise funds and awareness for the American Cancer Society. He is an amazing inspiration. If you get a chance to follow him and possibly throw a few bucks to the ACS through his website ("Donate" at the top of the page), it would be greatly appreciated. He needs all the prayers and support that anybody else does. His site:
http://trekforthecause.com/
Thanks for reading!
I haven't had much to write about lately (and I guess looking at my previous post I never even edited it), with not feeling well and being very tired pretty constantly, I've been stumbling through a lack of motivation, but I figured since I'm not doing much on a Saturday night (which is normal lately), I'd go ahead and scribble something up.
To update the previous post, I continue treating the "area of concern" (which the docs are pretty certain is indeed necrosis - a good thing and I'll explain why shortly) with Trental and a Vitamin E supplement (which didn't seem to help, but makes sense to keep trying since it's not giving me any side-effects); I also recently began a low-dose regiment of steroids (bleh), which as usual are wreaking havoc on me with regards to side-effects (more manageable than previous higher doses). Moreover, on Monday I will finally begin a 12 week, M-F per week, hyperbaric chamber oxygen therapy treatment at St. Elizabeth's Hospital in Covington, KY (60 total "dives" as they are called because the atmospheric pressure is increased in the chamber akin to scuba diving - I guess). I personally ruled out Avastin as an option for treating this because (as some of you know) gave me a rather (ahem) uncomfortable side-effect (for those of you who don't know what it was are probably better off). Again, surgery is still pretty far off, but I'm not sure which I would prefer between that and Avastin (if that tells you anything about what that drug ended up doing to me).
Anyway, that's how we're going about treating this butthead (I didn't even realize that could be a pun until I typed it). Necrosis makes more sense than tumor activity simply because of how rapidly the area grew over a month. My tumor has never (to our knowledge) grown that quickly or been that "active", and especially since it was definitely hit with a heavy dose of radiation, it's probably just dying tissue (yay for still having the brain damage excuse!).
During the past few months, I've bounced back and forth seeing an occupational therapist without promising results (I started off poorly, then improved drastically, then collapsed to worse than how I started... all probably due to a splint I've been wearing to stretch out my tendons to help break up some muscular tone in my hand, not to mention my lack of exercising at home due to all the other crap I'm fighting through), and will probably be seeing a certified hand therapist (CHT) while I endure the good times in Covington, KY in a glass tube filled with highly pressurized oxygen force feeding my tissues with goodies - not at the same time... I also recently went to a sleep clinic ("results" Tuesday-ish) to find out what's going on in my sleep, which could ultimately help fix my seizure issues (but probably by using a CPAP - continuous positive airway pressure - machine, which is miserably uncomfortable - I've had one in the past and couldn't tolerate it, but apparently they are more comfortable now). I think I might have mastered the art of adding tangential thoughts within sentences (I feel dizzy just writing that last one, so I hope it makes sense - I'm not re-reading this). I have also been able to get out and walk for short durations, which is helping to strengthen my leg and keep me fit(ish), but again, some days I just don't get off the couch. I've gotten people pretty upset with me for being completely candid about how I'm feeling and/or how I make fun of myself... too bad. I also have enjoyed and benefitted from several massages (I don't think I can go back to not having them). That was a boring/dull ending to a paragraph.
Here's a question to address from one of my OT friends in Pitt:
"Are you experiencing any changes? Are you still using the CIMT or is that on the back burner right now? Also, maybe I should already know this, but is it your primary motor cortex that's affected? Any sensory or anything? I'm totally into neuro right now -- kinda what I'd like to get into one day, when I'm a grown up OT -- so sorry for all the questions."
The changes are unfortunately mostly that I'm getting physically weaker due to the damage from the radiation (though once I get the energy to work it, I'm certain I'll be able to recover to at least 85-90% of "normal" - yes CIMT, among other things besides the dorsal wrist splint, is on the backburner for now until I start back up with the CHT)... The surgery from 2 years ago removed a majority of my sensory cortex, but the radiation hit it all, so there are indeed issues in the motor cortex as well. It also affected my pituitary gland, causing a variety of hormonal issues (not like PMS hormonal, though the roids do that sometimes, but more like I need various drug supplements that the pituitary now struggles to produce).
Whew! I think that covers everything since the end of radiation! I need to write a bit more often I think. I'll try to put some MRI pictures up so you can see the "angry spot" and the other goop.
Also, check this out: my friend is trekking from Fountain Square in Cincinnati to Los Angeles to raise funds and awareness for the American Cancer Society. He is an amazing inspiration. If you get a chance to follow him and possibly throw a few bucks to the ACS through his website ("Donate" at the top of the page), it would be greatly appreciated. He needs all the prayers and support that anybody else does. His site:
http://trekforthecause.com/
Thanks for reading!
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